My Doctor is Killing Me

Just When I Think There's an Answer....

2011-11-15T10:53:00.001-08:00

A few weeks ago, my newest general practitioner, at the advice of a wise person from Cedars Sinai, (more on my new hero soon), gave me a test that would measure cortisol after taking dexamethasone. Anyone reading my symptoms of the last eight years, someone would seek answers in the line of Cushing's disorders. Well the Dex test is supposed to see if my cortisol goes up or down after taking the drug. The next morning the test showed that my cortisol was suppressed so something was working properly. My GP however, didn't quite get that this was the point of the test, thought something was askew, and sent me to yet one more new endocrinologist.

Now I'm not a fan of many doctors as you can well imagine. It's been less than fun visiting endo after endo who have done more harm than not. I said specifically, do NOT send me to Nahkle, after the humiliation he sprayed me down with, and fortunately he isn't in our system at the new doc's practice. Instead I went to a younger doctor who seemed to have a far better education, and currently serves as dean of the endo department at a local medical school. I looked up his ratings from patients and I looked up his history as far as paying attention to new patients.

The first thing he did was remove any of my asthma and sinus medications that had steroids in them. That was good. The second thing he did was look at my history, although I believe he missed some major points I made. It did seem I was going to be given the 'Well, you're going through menopause so there's nothing I can do for you." He started saying that when I reminded, as gently as I could, that I've heard that exact sentence said to me from the time I was 22. He then realized I had PCOS examinations, and checked on my goiter. (Yeah, Love that word.)

He started asking questions that pointed back to the Cushing's diagnosis I'd been showing symptoms of for the last eight years, but then 'it became apparent since my Dex test was the one answer he had, he didn't feel that was the issue. He also asked about my adrenal history. Finally. This was the ONLY time I had ever been asked these questions in my entire medical history. I've had adrenal crisis issues for years, since childhood in fact, and no one since childhood has ever mentioned adrenal issues. Another interesting fact is my body seems to produce a lot of cholesterol related stones, (gallstones, kidney stones, even appearances of rocks near major joints).

I asked him point blank about Cushing's and was told point blank, "Your case is complex, yes, but I don't see Cushing's. I think we should take blood tests to see what else there is, but I think you're just getting older." This is when I deflated. Here was so much hope, and then, he quit on me. He spent a half an hour asking questions, sort of read my history, and decided, "Oh middle aged white woman must be on too much internet and Oprah" as I've faced so many times. There hasn't been a doctor who listened to me except for my newest GP in years, and I didn't think that there ever would be. But, there is a small glimmer of "well, maybe...."

Flash back to my hero mentioned above. I first saw Sharm McGraw on Mystery Diagnosis when she told my story through her history. The show ran years back and years back I tried to find her as she mentioned running a patient advocacy service. It became a very difficult task until recently. I saw her story repeated and thought I'd try one more time. This time I had luck. In fact, she and I have emailed, with her wisdom of offering what tests MAY help my doctor figure out something. She made the point of stating that this one test was never the whole answer. She didn't expect it would offer me any hope at all. BUT she did offer me the name of a doctor and a clinic just few hours away in California.

It turns out Cedars Sinai has a Women's Health Research Center. They also have an endo center that deals specifically with hormones only women battle. Surprising also, the center deals with metabolic issues faced by women. The waiting list to see the doctors there is almost two years. However if you are willing to call every few days and see if there are cancellations, there are chances of seeing someone sooner. And, it's been Sharm's job to help get information to people via conferences and seminars. At these events, doctors see women who have battles similar to mine.

Four months ago I went from 176 lbs to 205, and now I'm going down again. (Two weeks ago I went from 205 to 192). I just want to have ONE answer for Myasthenia Gravis, Ehlers-Danlos, Hashimoto's and Trigeminal Neuropathy, along with major depression. Autoimmune disease don't compound in most people, and yet for me there is a trend in that direction. I gain and lose weight for no apparent reason. My hair turns to straw, my skin bruises and no one seems to believe that any of this is related. I can't fathom so many illnesses of such an odd variety not related somehow. But, doctors aren't believing me. They don't seem to get that this isn't make believe. They'd rather try to kill me by not caring or worse, trying to placate me with "you're just getting older." Women need to be heard, and I mean really heard. We aren't all sitting around making up illnesses or spending our lives online hoping we have something Dr. House will discover.

On a final note this week, I did run into someone who has three of my four illnesses. In 1964, three doctors wrote a research paper on a young black man from Georgia who had Ehlers-Danlos, Myasthenia Gravis, and Thyroid disorders. The doctors have either passed on or retired, and I'm unable to reach any of them. They noted how odd it was to find all three in one person, and how much of this has affected the then 22 year old. I would very much like to find this person and see how his life has turned out 47 years later. He was written about in the year I was born. If anyone has heard of this person, please contact me via the blog. His life could change mine. And I hope some of yours as well.

I Think She's Gonna Blow!

2011-06-22T00:12:00.000-07:00

I'd like to catch you up on some things that have been going on. First of all, there's been another doctor incident, and yes, it nearly killed me.

I found a great new doctor, well, I thought she was great. She even offered me a way to help me lose weight. Sadly, this was in the form of a pill and as we've known from past blogs – pills are bad. I ended up having very high blood pressure and possibly headed for stroke. There is only one solution and that is to stop taking that medication. The bad part is that I was starting to lose weight and I was starting to feel less depressed; the good part is that I no longer have to check my blood pressure twice today. My husband grew afraid that a stroke was imminent, as my blood pressure reached an enormous height. Even the doctors were concerned, finally.

I now understand why blood pressure is called a "silent killer" because I did not feel any symptoms. Instead I could only rely on the numbers that my meters read, and I had what a woman undergoing active labor of twins, during preeclampsia had. This just goes to show more reasons I will never have children – blood pressure issues!

It was farcical finding a resolution. One of the doctors decided that it was my pain medication causing the problems. However, at the same time I had been on that same medication for nearly 10 years. Another decided it was my allergy medication. They all finally concluded that a combination of my allergy medication plus my new weight medication was the culprit. This was decided after month of having blood pressure well above the levels recommended if expecting a stroke.

As far as weight loss goes, during that time I felt terrific. My energy levels were up and I wanted to do everything, so I did. I used my Wii, and danced and danced the danced. The result of this was ruined knee caps, swollen hips and now I fall down all of the time. It turned out all that dancing was making me less stable once I was off of all of that medication. It also turned out that my pain levels had been increased greatly, but the weight medication hid the pain levels.

After three weeks off of the weight and allergy medication, I ended up gaining 4 pounds and now I'm in the place that I was before started to lose weight this past December. Here's the problem: weight causes joint pain joint pain causes all sorts of issues. The primary issue is of course is that I have more joint pain which means I need to move around and exercise, which means I need to lose weight which I can't do because it causes more joint pain – getting the picture here? The last few days, I'm starting to get used to being off of all of those medications except for my standard pain meds. However because of the hot weather, I am now sleeping a lot more than I want to be.

Sleep is great. I can't complain about sleep. Here's the thing. I hadn't slept for more than four hours for nearly 7 years straight now. I'm now sleeping six hours a night which I'm completely not used to. It's great for me it's bad for my pets. So my pets now are trying to wake me up after four hours of sleep! I do laugh about it. I have to laugh about it. Wouldn't you laugh about it? You finally get to get to sleep, only to find that your cat is now walking in your face at 4 AM. They beg me, “feed me mommy feed me”.

That’s what happens. Realizing that I can't move around until I lose weight, I have to start yet another weight loss program. I'll try some sort of Nutrisystem, or maybe instead, then granola or vegetarianism or all the other weird things. I got one more new thing. Consumer Reports posted a statement that there are three or four programs that work better than others, through their testing. The second of these which was coincidentally least expensive is Slim fast. There's only so much weight loss you can afford when you're on disability. You could go for $75 a month program that involves chocolate. I went for chocolate, wouldn't you go for chocolate?

The great thing about being on the chocolate program is, well, it’s chocolate. The bad thing about being in a chocolate program is, well, it’s chocolate. I am getting tired of chocolate and those words sound weird. Also, I'm not dancing, yet, so what happens next?

Menopause. I am now turning into the old lady. I always knew I was. You know, I talk to my computer and I tell it....(using speech recognition)... PE are IOD. It doesn't read this quite right, so it gives me dots at the start of the word menopause. But you don't lose dots-- you lose periods, which all alone would be a fun day. I was looking forward to it for 35 or so years. Instead, I'm finding myself sitting on the couch wondering how deep my voice will get. That, and hoping that any chin hair I receive will be someplace where I could find it and pluck it to get it out of the way of anything else I might use.

So I believe we're caught up at last-- meds cause blood pressure issues weight causes pain, weight loss causes blood pressure shoots no weight loss causes pain. Pretty much sums it up. Really. This will get sillier. I promise a silly blog is due. I started to write one tonight. I'm so punch-drunk tired from not sleeping. Oh yes I did sleep, though no I didn't. Oh yes I did. Oh, no I didn't. I don't get the sleep I want when I'm waiting for a cat to put her face in my nose. Any minute now. In the meantime the dog is heading for his potty pad so that must mean it's time for me to stop posting a blog-- until the next time.

Flex Spending Or F'd Spending?

2011-06-17T09:52:00.000-07:00

A childhood friend, and all around GREAT human being, Sue Quartarone wrote about her issues with the government's answer to Medicare Gaps and other issues with high pharmaceutical costs- the "Flex Spending" Accounts. They are supposed to be some sort of savings program designed to keep medical costs down for those of us who just can't afford them. Instead it's become the bureaucratic slapdashery that seems to permeate all of the "helpful" ways the government steps into our lives.

I'm not a Libertarian. I refuse to align myself to ANY party at all. At ALL- and NEVER will I be called Democrat, Republican, Libertarian, Mormon, Lithuanian, or Tap Dancer. I just don't see the point in this stage of humanity in the separation of humans based on something that may have had a purpose when Tories, Whigs, and Separatists made for great history book babble. If the basic premise of political action is to find a joint answer for questions needing a resolve for the greater good, (all together, Hot Fuzz fans, "The Greater Good"), then unification is the first step in finding those answers. Deflate politics, and deal with issues. Period. But that's my 47 year-old's optimism again. Sorry for that babble.

Sue wrote this wonderful statement of the frustration we ALL feel when we rely on the programs that are supposed to be in place for supporting us, but instead creates more aggravation, questions, and despair.

Is this country f*cked?
by Sue Quartarone on Tuesday, 14 June 2011 at 12:41

In order to get MY money back from the flexible spending account for items such as cold medicines or other OTC items, I need a prescription--for each item specifically and with the number of refills allowed--and it(prescription) must be dated before the purchase was made.

So, every time I go to the store to buy Dimetapp or Benadryl, I have to call the doctor for a prescription and hold onto that prescription to submit to the reimbursement company? CALCIUM, which every woman MUST take, and OTC vitamins need a letter of medical necessity. I called my doctor and was informed that the letters/prescriptions will cost me MORE THAN I will be reimbursed! Is this Obama-care at its best? WTF? Is this what we pay our legislators for? Who the fuck came up with this one?-- I know that this is regulated by the IRS, but it's still a garbage rule regarding our health care.

This is just as bad as my other grievance that even though we supposedly don't have to pay a co-pay for our annual check-up IF you then discuss anything that's going on with you medically during said physical, the doctor can legally bill the insurance company for a second visit. NOT ONLY THAT, but then you, the patient having that annual now have to pay a co-pay for the "medical" portion of the check-up!

First of all, one of the first questions the doctor asks at the appointment is whether you have any questions or concerns about anything regarding your health. THAT IS WHAT A PHYSICAL IS FOR!

Second, I was not informed by the doctor that by actually asking a question I would have to pay $25 for an answer.

Third, with this wonderful new loophole in Obama's healthcare bill, a doctor's office can legally bill the insurance company for two visits even though we were in the office for only that one visit,

AND they (doctors), are getting paid by the insurance company twice the amount of what they formerly were paid for the same type of appointment. Why can't these doctors just write off the co-pay since they are already getting extra cash from the Insurance? The only thing all of this greed based medicine is going to do is to keep people from calling the doctor!

Sue's point is what I hear screaming from the mouths of every one who wonders what the point of Flexnet spending is! And more so, how can insurance companies now double bill for appointments previously included in the insurance policies as covered preventive annual care? The news plays the tune of how horrible our health is as a society in the United States, yet when we try to do something for it, our penalty is financial, and often due to that reason, we end up missing out of preventing issues that may have been discovered at these annual appointments.

The civil war is at hand. We have been pushing for a change in our politicians for the removal of lobbyists, for the true concept of listening to constituents, for the idea that our bodies do not belong to those who make rules in a cushy office in Washington D.C. . The true health of the United States has more to do with the stress and pain people we elect create rather than the stress of our lives, families, work, or lack thereof, and certainly we don't like the idea of walking into a drug store, expecting our self-paid benefits to be ignored due to yet another loophole in some other rule created by yet one more person in office who was wooed and manipulated by Pharmaceutical companies and Insurance agents.

Since Ronald Reagan made a stand and removed people from Mental Health Facilities; since the inceptions of HMO and managed health "solutions"; since some nut job in a voting capacity elected to change our children's Physical Education, cafeteria, and oh yeah, the free breakfast/lunch programs---all of this is the start of what will likely be the end of political interference in our health. The American public screams for comfort foods, low cost options- which tend to lie in Fast Food-, and even the idea that we have to go to auction websites to find medical equipment that wasn't"approved" by some manual of Insurance Company ABC.

Our civil war includes those of us who are on Medicare or another health program because we are disabled, of advanced age, and have PAID into a system. Our civil war is against those in the media who focus on our weight as a society rather than the removal of physical education in our schools. Our civil war is against those who stop mental health appointments after "six visits per year as stated in our guidelines". Six visits? Seriously? Our civil war is against programs that blatantly LIE to the consumer regarding their purpose and our ability to use them- such as Flex Spending.

Sue is now a warrior in our civil war. I'm sure many reading this are as well. The only way to stop it is to cut back on the multitudes of those who seem to have cropped up in Washington who plan our health decisions based on GREED. Many of us voted for a President whom we expected to listen to our causes, who seemed to be less likely to be swayed by those already in power. Instead, it's apparent we have a man whose hair is now whitened by the rigors of office- who was schooled in the reality of his role as Commander in Chief. No one in the White House ever has, nor ever will be able to change the way the House and Senate makes decisions until we, the people, make the drastic, warrior step, to change the way our public offices are created, run, and how long each person in those roles should stay there. This civil war is on its way to be one of the longest in history. The Rich may get richer, but those of us in the trenches are now wiser, and that is how true change begins.

We have Freedom of Speech. We have the right to life, liberty, and the pursuit of happiness. We have the thousands of years of human history to teach us why those in power inevitably fail the lands which are led. It always, invariably, starts with greed and ends in bloodshed. Hospitals, doctors, nurses- and Insurance companies- are creating the bloodshed now. Right now- we all know at least one person who has died of medical mishaps, or due to a "rule" implemented. You and I as warriors need to let those in charge that we DO NOT want any more government rules and missteps. We want to be given what is right, fair, and most of all UNDERSTOOD by those who are expecting a level of care. Flex Net spending is one HUGE issue that must be addressed. Write to your congressmen. Call your Senators. TALK to your friends, families, your health care providers, and even your Insurance Comapany. Be the warrior, not the victim.

Learning How to Play Thinner

2011-01-22T23:06:00.000-08:00

Since I've started the morphine and the other medications in the first years of the new millennium (sounds rather posh, huh?)I watched my size 5 body grow and ebb like a fury of tidal waves of fat. I would be on a pain med, and my metabolism would look me in the eye as it waved "BUH-Bye!" When I grew too accustomed to one, the weight would suddenly wander away without a slight effort. Medications and I were on a confrontational path to annoyance. I need them to stay out of wheelchairs, they need me to flaunt superiority in weight control.

I started getting a bit of an issue with food. A "bit" is an understatement. It was a nightmare. If I ate too much I'd gain, obviously, and if I ate too little I'd gain, annoyingly. But when I eat like a normal person should, I still gained. The standard rule is to be a specific weight you need to eat 10 times whatever the weight is in order to maintain the proper calorie count. For instance, if you want to keep at 120 pounds you need to maintain a 1200 calorie average in your diet. Some days you can get away with 1700, some days 700, so it averages out, right? Well I did that for 20 or so years. I ate one meal a day. Once. That's it. I would have a small something for breakfast at 3pm, then a dinner or a lunch somewhere around 7. That was it. Never drank coffee, sometimes had a beer or two, or a glass of wine with friends.

When I got told my a less than human medical professional that I was "eating too much" my fear of gaining weight kicked in. I didn't have it before, I figured I was gaining weight from medicine, whether anyone else believed me or not. It was a fact. But the one doctor who was supposed to solve that issue said, I was "eating too much". That fear made it so I would get irked at myself when I did eat more than 800 or so calories. When I was pissed I would figure, I better eat more to prove him right. Or when I was frustrated, I stayed away from eating for days. That's an eating disorder. It took me two years to stop listening to his voice in the back of my head.

The new voice came from the doctor mentioned in the last blog. It wasn't his telling me that 900-1300 calories a day was too much. It wasn't even the idea that he planned on cutting me open without asking anything about my disorders, (but that was part of it). It was getting a nice gift from my husband of a Wii and a Wii fit that led me to losing 6 pounds since Giftmas.

It doesn't matter that I'm unable to do many of the exercises hidden as games. It doesn't matter that there are days when I can only use a left arm or a right arm. It doesn't matter that I'm not dressed up to the current standards in gym attire. I can sit in my pajamas, wave around, wiggle a bit, sometimes it only takes a waddle, and shazam, an hour speeds by. When that hour is up, I get a status report that states I'm 500 or so calories spent. That's half my days caloric intake gone. I am officially burning half of my day in an hour. Did you know that it takes four calories to swing a hula-hoop, and ten to walk a tight rope? Me either. Now we do.

It also tells me how many days I've worked with the toy. It is a toy, face it. It's a video game that interacts with my body, but it's like any other physical game of catch, baseball, golf, and Frisbee(TM) in some senses. I do things and things happen that make me feel healthier. That's kind of great for a game. I'm not trying to sell you one, though. I'm trying to say that if you can find something that is fun to do that makes you feel great, and helps you sweat off some of that lunch box, then do it.

Before I was using this toy, I had used some dance DVDs. These were by Jenifer Galardi, and I discovered her on FitTV. Years back, I used to love dancing, gymnastics, and just bouncing about having fun. I had a great dance teacher in college, Dawn Kramer, and just loved her class. She laughed at me because one day I admitted, I hated sweating. For years, I hated it. It was the idea of not being able to shower right afterward that bugged me. Sweat, get cold, sometimes ice in my hair, then go home. New England dance classes are a great memory. I was also 110 pounds, muscular, lean, and could lift a small car to change a tire. Okay, maybe not that strong, but I could do much more than many people.

I used to run on a stair climber, I used to use free weights, and I used to walk everywhere. When my body gave up on me, I didn't really have any idea what to do. I couldn't do much more than isometrics. Horseback was out. I played with my doggy as long as I could, but my ex became her full time doggy-parent as my hands started to dislocate more every time we played. She is in great hands, now. My cats became my toys. It wasn't enough. I couldn't move. I didn't sleep, and I didn't have anything but pain when I tried to change any of it. Then my husband got me the video game.

It doesn't take much to find ONE thing that makes you happy. Maybe you can sit on a hoppity-hop. Maybe it takes spinning on a lazy-susan. If you like tossing a tennis ball on your wall to irk your neighbors, so what? It's doing something. Maybe you should ask your neighbor to play catch with you instead, but mostly you're just trying to move somehow. Clapping, rolling your hands, wiggling- it's all movement. Movement helps you gain muscle strength, burn calories and lets you have fun. As a kid, I used to love beating up the large collection of dough I had acquired over the years. Pink, blue, green, orange- smells that still remain embedded in my memory- all are part of the best times of being a kid. So be a little childish and play a bit. You may lose some weight, or you may gain some smiling. Either way, you'll feel better.

So this blog questions- what is it that you do to play? What is your fun? Do you have recess for yourself?

Psychic Doctors

2011-01-08T09:06:00.000-08:00

Welcome to the new year. It seems in 2010, I was beaten down so badly by my own body I had little energy, inclination, or ability to write to anyone about the issues I was facing. There were more curve balls in the past year. Myasthenia Gravis was one, and having Trigeminal Neuropathy was another. Near the end of the year, one of my doctors decided, with all the breathing issues, whether I liked it or not, the Prednisone was back on my plan for a week or so. In less than a month, I gained 26 lbs on top of another 20 I gained over the summer. This is frustrating. So I see a doctor.

My HMO provided me with a Primary Care Physician, (PCP), who is, well, to be blunt, not exactly friendly. She is medically competent, but lacks any empathy. I would rather see my dog's veterinarian who may not know what's wrong with me, but is absolutely at least interested. The problem with a doctor with her credentials, aside from her lackluster bedside manner, is her ability to pawn off patients to other just as inhumane "specialists" who would much rather be seen in a surgical unit than anywhere near an actual patient who might require a conversation. It's not like Dr. House; it's like Dr. Frankenstein.

I'm firing these doctors from the HMO as of this very moment. There are so many sites that I can go to in order to find out what other patients in this area have found- I don't have to waste my money or time anymore. And, at this point, I have not been satisfied feeling like I have to just blindly take someone's assumption at face value. And, this guy today- all assuming. He came across as a Psychic Doctor.

Psychic Doctors seem to spring up everywhere these days. They think that any and all patients walking in the door have just come in after viewing the last episode of Dr. Oz, and only want to talk about the five health issues listed on the front pages of the search engine landing pages. They also seem keen on targeting the very same patients with whatever potions and pills the latest sales man has brought to them. These professionals appear to lose their understanding of the meaning of the practice of medicine and instead just go through the motions of ushering in people at 10.3 minute intervals, barely even introducing themselves, and certainly not polite enough to let the patients know that when the same doctor is found leaving the room, they've completed their task of the appointment. Go directly to check-out, do not pass go, ensure we have your copay.

It can't purely be the physician's fault. A managed health care system demands volume of patients to meet quotas. It demands that specific illnesses have specific codes marked down on intake sheets or the appointment won't make a specific set of funds. That's a problem. As patients, we can tell a doctor we are there to see them for Problem A, but by the time we are sitting in the waiting room, the office has already deemed that Problem C is the one that brings in a better income, so for some reason only known to bankers and business men, our health is now redirected to whatever is going to be a bottom line payout by the insurance.

This week I was subjected to exactly this type of treatment. I walked into Dr. F's. office expecting to be given some advice on how to handle a case of constipation. I don't want to have any surgery. I don't want to have anyone who isn't aware of my disorder taking a scalpel to my body at all. Because his specialty is listed as Gastroenterology, I had assumed he may have some suggestion on what to do over the weight gain from the steroids I've had in the last few months. Instead, I was given yet one more steroidal treatment, which he described as a "salt absorber". I was told I was eating too much. This is never smart to tell someone who has eating disorders, and who keeps a vigilant food diary- at 1100 calories to 1500 calories a day, that's not possible. I was interupted not once, not twice, but six times when I tried to tell him what I had taken for my issue, and instead I was cut off at first being told I was probably addicted to the laxatives, and then told I needed to have more of them. He never did find out that I had adverse reactions to two that he demanded I have in my medicine cabinet.

Psychics, as some may know, are listening to cues and trying to predict your questions before they are asked. Most astound us by the knowledge they have of our lives, when really they are watching our responses so they can figure out where else to lead the conversation. Well, the doctors who want to tell us what is wrong with us before even reading our files are doing much the same thing. What really pissed me off about this guy, more than the fact I waited for nearly an hour to see him for less than six minutes, more than the fact that I was assumed to need or want Lap Band surgery, and more than the fact he asked me about my illness and cut me off before I told him what it was- he expects to perform a surgical procedure on me, without knowing ANYTHING about Ehlers-Danlos.

At one point in the very short conversation, he asked "You've had orthopedic surgeries, then?" He stated this rather than asking this, and was already on to his next statement before I said, "No, I'm not able to have that type of surgery, my tendons would not handle it, they'd stretch back out of place soon after." He was telling me he was planning on performing a procedure that he let me know had problems such as perforations during testing. Well, for someone with a collagen disorder, hearing this stated from someone who hasn't cut into someone like me left me horrified. In fact, I believe my constipation was healed at that very second.

Within moments he was shuffling me out of the office, setting me up with his "procedure" as he had the previous six patients there from when I arrived. I heard the exact patter as he gave to them, and without missing a step he was in to the room of the last patient of the day. There were no mistakes for him- his job was to get me to agree to a procedure and to ensure the insurance company would pay for it. In fact, I was told that they needed time to get approval before the scheduled date. By now I had made up my mind to cancel this.

If a doctor pushes you into a procedure or tells you his point of view without hearing you, he's not a good doctor. The next morning I scoured the sites that rate medical professionals for someone who is better equipped to hear me, and less interested in pushing me in and out the door. According to all I've read, I'm of the belief this person is one I will meet a week or so from now. If all I have read in blogs and reviews is correct, I may have a very competent young doctor who is willing to hear my issues without telling me what they are first. It may be blind optimism on my part.

My current "Primary Care" doctor has given me two years of seeing specialists, and still not recognizing me when I come in. The last time I saw her she scheduled me for a second annual physical, forgetting that I had one only weeks before. She hadn't read her own notes. She also forgot that she had sent me to another specialist just last year, and said that I was mistaken, it had to have been another doctor- so she sent me in for yet one more sonogram and x-ray. The Radiologist said she had remembered me coming in only a few months before and was surprised to see me so soon. (As was I.) The one hand-off I am grateful to have is that of my neurologist who was able to pinpoint not just one but two issues in less time than this PCP even tried to find in months. He is now one of my regular doctors. She no longer is going to have access to me. I am done being her lab rat.

So this months' question- What have doctors done to make you think they're listening and hearing what you're saying? Have you felt like cattle or do you feel as if you are actually being cared for? What would you tell a doctor if s/he asked how a patient should expect an appointment to go?

Where Did She Go? Name That Cootie!

2010-09-20T11:15:00.000-07:00

I know it's been a long time since my last post. I've been full of Good Intentions, which somehow didn't translate to Action in the last few months. The problems with pain include never really knowing when you're going to be able to do simple tasks such as writing an email, or even folding a napkin. Just spent months trying to figure out when my hands would co-operate. Sometimes I thought I was close, but didn't quite get past the first paragraph.

Pain has a tendency to lead to depression. You feel so beaten down that the body is not going to change its habit of spasm, ache, sharp ache, exhaustion. It becomes a cycle of "will it ever end?". If you're like me then you feel humiliated for not being able to walk to a mailbox, or even get to the bathroom because your legs won't approve of the motion. The last few months led me on a new adventure in the game that has become my body- Name That Cootie!
Every few months I get migraines. They usually come with my menstrual cycle, and tend to last about 4 hours. I know they will be coming because my right eye will suddenly look very sleepy, the lid will droop, and I may at times see the classical glowing aura that is well known in the world of migraines.

Doctors have discounted this as merely a "woman thing", and only one has ever taken them seriously enough to give me a prescription, Sumatriptan, which helps nip the head spirals in the proverbial bud. My body decided to add a new trick to the repertoire and I started feeling the eye droops, and then my right cheek would feel absolutely nothing. No pins and needles of numbness, nor would there be any muscle response if I smiled or did any other facial expression. The headaches didn't follow so something new was happening.

Once or twice a year, I get a thing called Cyclical Vomiting Syndrome, (CVS), which started around the same time I got my first gall bladder attack about 7 years ago. This also seems to be a precursor to any migraine pain, and often rides along with the sharp ache behind my eyes and ears. I get up, my stomach feels as if I am on a Coney Island Carney ride, and if I make it to the restroom in time, I redecorate the toilet in early American ick. It's a charming way to woo my husband back to our honey moon days. As a child, up until my early 20's, I had IBS, and it ran pretty much the same way as this. No matter what I eat, drink, or think about, the bathroom must be nearby. The bouts may last a few hours, or a few days.

After visiting the doctor for an annual check up, as required by the insurance companies who wonder why they don't have enough co-pays coming up on their accounting, I got to chat with her about the face drooping. She sent me to a neurologist. The gentlemen, Dr. Gregory Baker, is certainly one of the very rare people who listened to my symptoms and history, without adding his own "Oh that's part of getting older" to the statements. I was poked, sent to radiologists, and given blood exams. It turns out the droopy eye and all of the facial issues is part of yet one more auto-immune disorder, called Myasthenia Gravis.

Dr. Baker warned me that the cure isn't so much a cure but a treatment. There isn't a cure for auto-immune issues. Ehlers-Danlos, Hashimotos, Myasthenia Gravis- I sound like I should be some sort of hospital side-show participant. Add constant ethmoidal sinus infections, and now jaw pain, and you start to wonder if there isn't just one disorder that checklists all of my issues.

During all of this, I've stepped back from doing Stand-Up comedy. The pain makes it difficult to drive to clubs, but the emotional drain of having to handle making other people happy can be a bit overwhelming. In place, I have actively worked on my comic book art, hoping this outlet allows my humor and creativity to escape, as the comedy had in the past. I don't get timed, I set my deadlines, and the best part is getting feedback I can delete if I dislike it. Deleting people in clubs means possibly no audience whatsoever. Doesn't quite work right. It would be a much better gift around holidays to harness that power, wouldn't it? That's not to say I'm not still writing comedy. There's still shows I'll be doing, relating to music, comedy, and stand-up. I just don't know where or when, as of yet.

But, since I'm drawing and writing more than I have in the past years since teaching at a University, or even whilst in the film industry, my right hand and fingers are starting to fight more against me. That's part of the reason my blogging has slacked off. There are weeks of feeling as if my hands are baseball mitts, or they have razors hidden within the knuckles. My wedding ring gets so tight on my finger it ends up being placed nearby, just so I can feel my hand again. Then, the real fun of having the sinus attacks get so bad I was put back on steroids really destroyed me.

I have often commented on the evil torture of medicine known as Prednisone. It causes me to gain not just a few pounds but tens of pounds, (stones if you are from the UK). Inflammation is supposed to reduce with the steroid, but the weight gain just created more joint pain which in turn, added to the inflammation. It doesn't make sense to me, either. It's a cheap option for doctors to give us when our lungs or sinuses are misbehaving. (A full 30 day supply runs about $5, no insurance required.) I was placed on this lovely pill for only one week, and it's now been three months of feeling as if I can't use my right leg or left foot. Some overweight people think I'm "medium sized", but for someone who was small for nearly 20 years, being a medium is definitely a drastic change for the worse. I can't fathom what it's doing to my joints, but I'm sure that the bones are rubbing together twice as badly as they had in the past.

Myasthenia Gravis, Hashimotos, Ehlers-Danlos, and chronic sinus issues- compiled with the vomit attacks makes for a pretty unhappy gimpy rat trainer. But, anyone who meets me will tell you, complaining about it all of the time is nothing less than boring, and since it doesn't change the situation, I don't do it often, if ever. Rather than pout and sing out "poor me" songs, I just focus on ideas for the comics. That is also why I hadn't written a blog in so long. Talking about the medical issues isn't always healthy for me when I can't get through a day because of pain. Talking about it makes it real. Reality isn't always a happy place, and keeping my body out of my mind is one of the few ways I can cope with having all of these problems.

But, the blog is called My Doctor Is Killing Me. It's for all of use who have spent hours, days, months, years and even decades banging our heads trying to get to a state of "Okay". It doesn't have to be a state of health- just a state of feeling that something is under control somehow. So many doctors are spending time with me, letting me educate them in my disorders, that it seems like I will never find the doctor who takes time to look at the big picture, the pain/weight diaries, the medication history, and even the illnesses of my past in such a way so s/he discovers what can be done to stop ALL of it, or at least ease the situation. Being handed yet one more pain killer or one more steroid just seems to be the merry-go-round of medicine I've been dealt.

In the last few weeks, I've begun reaching out to specialists via email. Some are gerontologists, others are pediatricians, some are endo's, whilst others are internal medicine experts. I'm writing to them to see if the years of illness aren't just all part of one major diagnosis. Perhaps I will hear from one who says, "HEY! Gimpy Rat Training Girl- this is a case of Gimpyrattraining Girl Syndrome! I know just the cure!" like they do on the Health Chanel shows. No geneticist has responded up to this point. If I keep trying maybe I'll find someone who can tell me what test I really should have, or what treatment is better than dosing with opiates. I'm tired of pain meds. I'm tired from pain meds. And, I'd love to have a regular bathroom day- not one wondering if there will be a chocolate syrup run, or a hopeful for a frog-sized-fart one.

I can't have had perimenopause from the time I was 11. I can't have just randomly gained 80 lbs because I had an extra piece of french toast on Sundays. I can't have constipation for weeks on end after taking the same medications for years that leave me with the opposite problems on alternating weeks. I can't be on the correct dosages of Synthroid if my hair still falls out, nails still crack, and body temperature is still 96 to 97 tops. If I have Ehlers-Danlos, why do I have symptoms of joints that seem to mirror MS or Lupus? Why can't anyone tie all of this together as one package with a pretty purple ribbon, and find a magic pill to make me at least LOOK like I did back when I was walking up right. I can't fathom why my doctors don't look at patterns, big pictures, and complete history before coming up with "oh you have a sinus infection" (again, for the 13 time since May). What walks up stairs alone or in pairs and makes a slinkity sound? Why is "Islands in the Stream" in my head now? There are some important questions to ponder.

In the meantime, I'm back at writing and will continue to update with reasons and questions that seek the answers to why My Doctor is Killing Me. It's not just about me, it's about all of us who have wondered if managed care, health insurance companies, and our own doctors aren't hearing us or getting the big picture of our health histories. We want to not just know why, we want to know what can we do to make our lives better. We may be reduced to an unhealthy body for the rest of our lives, but we shouldn't have to feel as if this was an inconvenience to those whom we pay to care for us. We need to have our doctors work at our symptoms and our overall picture of health. We need to be heard. We need to be heard. And, we need to be heard completely.

The FAQs About Service Animals

2010-01-04T20:19:00.000-08:00

Many of my friends have asked if I ever use a Service Animal, or plan to, because I have so many trained pets. Service Animals, according to the American Disabilities Act, are NOT pets. They are trained to serve as assistants to their owners, and do NOT have to be dogs. There are many service cats, service dogs, service birds, service monkeys- and yes, even service rats. As a rat trainer, I've been asked if I could prep an animal for service to help those who have epilepsy, and even to help work as therapy animals. Service Animals and Therapy Animals are not the same thing.

One rat I had trained would climb into her owner's mouth and pull out any food items if the child was choking or was having a seizure. The rat was signaled by the shaking of a hand to jump up onto the girl's shoulder, and to wiggle her way into the mouth, avoiding being chomped if the seizure included jaw spasms. The "trick" wasn't hard to learn for the rat, and the girl had her for the full three years after I trained the critter. By that time, her Service Monkey had finished his training, and is still in her care, some four years later. Now a young lady about to enter college, she and her monkey are expected to live a long happy life together.

Service Animals are allowed into any place of business, and cannot be removed unless there is a threat of regular business operation by the animal. For instance, a restaurant may refuse a Service Rat because having a rodent in the location would make it difficult for other patrons to enjoy their meals. A Service Dog that barks at the actors during a theatrical production of Hamlet may be the reason an owner is requested to leave. The owner is responsible for the actions of the employed animal, and as such should expect that some business people may object without cause because there is a misunderstanding of the purpose.

There is no federal required documentation of a Service Animal, although several organizations exist that offer identification papers for a fee. If your animal is labeled as a Service animal, by either a patch, or embroidered emblem on a vest, bandanna, or leash, he is considered a documented animal. Some businesses are under the mistaken belief that you must show proof of your disability, and some sort of document explaining the reason you possess a Service Animal. People have asked doctors to give a prescription, just to alleviate any confusion. In some states, you can register your animal as a worker. Some airlines may require similar documents, but according to the TSA, no Service Animal may be separated from the owner under any circumstances, although it may be required that you show the purpose or training of the animal.

Therapy Animals do not have the same freedom of travel. A Therapy Animal may serve as a visitor to hospitals, as an aide to people with psychological disorders, or even work in prisons. But, as they do not serve a specific purpose for a specific person's disability, they are not considered to be Service Animals. Any animal can be a Therapy Animal, and doesn't require special training. Many organizations offer certification, for a fee, and some hospitals or non-profit organizations expect the animal to pass a degree of training, but a Therapy Animal can be considered a pet, and is not required to perform specific tasks.

In the era of the Dot Com, it wasn't unusual to see companies allowing pets into the workplace. It is believed that the work staff is more relaxed around pets, and more productive, working longer hours, if the pets are allowed time with the owners during regular work days. There are still major organizations that have doggy daycare as part of their benefits package, offer pet days, or even allow dogs, cats, and other pets in the workplace. This has become so common of a practice that even the SPCA offers tips to employees who do so!

Should you pay for a service that offers "ADA identification" for your service animal? Your state may require a registration through a recognized county office, or through a medical professional. It doesn't mean there is a fee involved. Some states recommend that your service animal be trained through a professional, recognized training service. But, as there is no federal mandate for documentation, there is no federal standard for training. The basic rules are the animal must be under control of the owner at all time, must adhere to specific tasks relating to a disability, and may not disrupt a place of business. But, having documentation for a Service Animal other than a clearly placed label is up to the owner.

Some people have discovered that having a simple ID card has allowed them easier access into businesses, and others have never found a reason to state or show that their animal serves a purpose except through recognizable vests, labels, or patches. For therapy animals, it is best to adhere to the rules of the organization requesting assistance. For instance, a senior center may request the animal be on a leash, or a school that uses therapy pets to help kids learn to read may require that the animal be calm during sounds of bells, laughter, or child play. It is wise to verify with your county or state websites to ensure you are following the recommended guidelines.

Today's questions- Do you have a Therapy or Service Animal? Have you found it easier to carry documentation? Do you feel a Service Animal must have professional training? How do you feel about animals in a place of business?

Madness known as TWILIGHT SLEEP

2009-12-28T23:51:00.000-08:00

We get accused by our partner of having a full conversation that probably sounds similar to this.
He- Hey honey, are you ready for bed yet?
She- Well I have to count the dish towels that will be needed by the four baking pans, next to the library and the tree with the shoes that look like butter dishes.
He- Are you sure you're awake?
She- Am sure that parts of my body are functioning as it does when I am wide awake-
But the cognizance of these actions seems slanted, spewed, and even down right mystical in a Harry Potter must be doing something there kind if way.

In fact, if you are on Ambien, Lunestra, or several other medications that are supposed to help you approach sleep, one of the most common side effects is the dodgy reality that usually is part of our dream life, but at this very point, the voices you respond to in your sleep. The actions you've taken as a sleeping person would be that of an awake person, and for some, even driving or walking to locations that are very familiar. In the safest situation, you are already in bed, safely, and likely your own, or at least a familiar secondary bed. You could be alone, or with a person who loves you enough not to video tape your oddness, and post on youtube to be used as evidence against you.

As you feel twilight sleep taking over, you may hear echoes of conversations you've held in the past. It seems logical to respond to these voices because they are directly speaking with you, about something directly relating to something important to you. For several months, when I first tried Ambien, I would keep a journal of all the weird comments that drift through my head. As I close my eyes, listening to the conversation I'm supposed to be part of, I'd nod along, in agreement. When you are in a half dream, half awakened state, it becomes unclear as to which of these worlds is the place where you resign in reality, actuality.

Do you continue a conversation in your head that may be amusing, but not productive? Do you continue a conversation hoping the glimmer of clarity will bring something to you that may help explain your difficulty in sleeping in the first place?

Your body may do rote acts. For instance, it is documented that those new to Ambien often have sleep walking episodes, and at least one case of sleep TV watching. Many have sleep dining experiences. A man in a New Jersey hospital undergoing sleep studies, got up then drove to his favorite coffee shop... read newspapers from dates that were months old... and then went back to the clinic, greeting the nurses as he made it back nonchalantly to his sleep study room. He never believed this was happening in the least, so the hospital produced, not one, not two, but fifteen different sleep studies videos that showed him driving through different areas of town, hitting the cafe drive through, and shuffling through the recycled paper piles to find the "right" ones.

Another side effect of the twilight sleep hypnosis is the lack of memory of the events afterward. During the moment, patients appear to answer questions, and appear to be comprehending. Any surgical unit can tell you stories of having long conversations with patients who are about to undergo full anesthesia. They say that the patients nods, responds, even jokes back and forth with the team. Yet when surgery is completed, only the most rare of patients will recall even the smallest moment of this social interaction.

Those who study the theories of hypnosis, and the Mind-Body connection studies from the Deaconess Hospital have pummeled into this field, find that it need not be a pharmaceutical interruption to the thoughts. How we pattern our self into falling asleep varies form person to person, but it does seem to follow a track into layers of cognizance. Some scientists believe that without the psychotropic meds, each of us has a specified flow of thought pattern that ebbs and weighs along with our conscience consciousness. It is believed that the medications that leap into a deeper part of sleep prior to our natural flow to that area of consciousness is what leads to the unusual side effects. The meds figuratively take us from learning to tie our shoes to putting us on skis in a very short span of time during a brain-based Olympiad.

One doctor suggested I diary the thoughts that were freely flowing during days when I had no Ambien before bed. Then do the same the following week, when I was on the prescription. Although I truly thought the words would come from a deeper place when on the meds, it turns out that I am really a Rubik cube of verbiage, not quite clear which combination makes the most sense. Yet, when not on the same meds, I write rather simple, non life changing commentary.

Facts are that sleep is the least understood body function for many reasons. We don't know why some people need to have 48 minutes of sleep followed by deep sleep, followed by REM, followed by theta, followed by myriad other stages. Some people seem to thrive on meager hours of 3 to 5 hours a night. Others need to have at least, the bare minimum of 10 hours. One thing is agreed upon. We, as a species, have lost our ability to sleep healthy. We just get what we can when we can, and hope its enough.

When it isn't, the side effects we have for our illnesses seem far more intense. The mood swings we battle with depression, PMT, PMS, or even a tooth ache is magnified. Our concentration for small tasks disappears. We may be diagnosed as having ADHD, when really we are just too tired. Perhaps the mood swings are simply the mind battling against the lack of REM. For those of us who sleep only as long as no other sounds exist in the room, fearing that a sound means someone else is injured or hurt. Lack of sleep even magnifies our concern for others as a side effect. Those who grind their teeth in their sleep during twilight time could attest that for some reason, the reasoning seems to make sense to them just at that time.

Is there a medication that does let us sleep, without skipping cycles that apparently are required for a full restful sleep? The pain killers from over-the-counter stores that offer "sleep aids" don't promise a full night sleep. You aren't supposed to take these more than once in 24 hours. Melatonin- a hormone long tauted by the homeopath community, has some merit as a sleep regulator, but other medications or chemicals in our system counter the effect.

As I type tonight, I drift in and out. I took some melatonin. I'm certainly on the edge of giving in to sleep, and I have weird thoughts regarding detective games and my cat snoring. I wonder if anyone reading will tell about their ambien-nesia. Perhaps someone will post about the sleepwalker who murdered his wife. Some will talk about night terrors, or night paralysis. And I hope all of this happens. The more we understand about what happens when we aren't conscience, the better we'll be able to handle the issues that we face when we are wide awake and searching.

Today's questions- What sleep disorders have you faced? Have you tried to use any pharmaceutical assistance? Do you use "herbal" remedies? What do you consider a good night's sleep?

When A Doctor Is Listening...You KNOW

2009-11-16T23:34:00.000-08:00

I've railed about the many medical fiascoes I've battled over the last thirty years. And I've mentioned that there are great resources that help weed out the "professionals" who are urged by pharmaceutical companies to alter our lives by pushing meds for diseases that aren't even recognized by Lancet, JAMA, nor any other medical journal. What I haven't talked about much is the way you need to interview a medical professional to find out if he or she is the right type of LISTENER for your disorders and symptoms.

A friend of mine is going through a lot of the same issues I've been battling since teenhood. She is easy to gain weight, despite a healthy diet. She has very little steady sleep patterns. Her joints are unstable, and her stomach issues are creatiing pain and have no specific source for the issues. I know her symptoms first hand, as I am also someone who can't sleep, gains weight when my calorie count is in the 1200 range, and both of us are consistent at a body temperature of 97.1 or within .1 of this. She has thyroid issues. She has digestive issues. She has connective tissue issues. She's also 20 years younger than I am, and has already given up on getting any help from any medical professionals. Her care has always been during the years when HMOs and PPOs are the only source of care. As a child all the way until my early twenties, I was fortunate enough to have a personal physician- a Family Doctor. Within twenty years, the model of Family Doctor has given way to Corporate Designated Healthcare professional. We no longer have relationships with our doctors. She is a victim of this, and I can see how it is destroying her ability to trust any medical professional.

Concierge Medical Care is the newest catch phrase, but it really is the once common practice of finding a doctor you trust, making an appointment, and having enough time to talk to a person who has professional experience and is willing to use that time to help us discover the reason for our symptoms. Symptoms seem to be lost on the current health care models. Symptoms are secondary to tests. Symptoms are what we are hoping lead to a solution, a diagnosis. But we don't see medical diagnosticians. We see formulaic, must-fit-in-a-medical billing code push to diagnose. We are losing contact with the humanity of our doctors. What once was common and general practice is now an overpriced, option for the have's, and seems out of reach for the have-nots.

I am, as a disabled person, on a Medicare program. This program isn't the government run Medicare- but a contracted health organization that is supposed to help support the system. According to the 153 page package I received this month, allowing me to determine if I should keep this option or move onto a different option, I am supposed to expect to have at least 15 minutes with my healthcare specialist, can have up to four "covered" appointments, and I am allowed at least two psychological related visits per year.

My friend, who has been seeking employment for months, is on a waiting list for Medicaid, a state run program. While she waits for the approval, or disapproval, she is unable to afford any concierge visits. If she goes to a county hospital, she cannot guarantee being seen by the same doctor on any visit. And, she has to pay out of pocket. For anyone on a fixed income, this can be a decision between paying rent or finding a diagnosis. Then, once a diagnosis is reached, medications or tests become another large financial concern. My friend is too sick to afford the help she needs to be healthy enough to find a job that would pay her benefits.

The problems for most who struggle paycheck to paycheck come from doctors who don't take the time to hear and understand the symptoms a patient is trying to explain. Because the low income patients have allotted less than 15 minutes per visit, no real medical history can be documented. The battle is getting years of poor health understood by someone who has up to 20 patients to see a day, and to expect that individual attention to lead to at least relief, if not a diagnosis.

Some ways to expand the amount of time a doctor takes with us is to ensure we schedule an appointment during a slower period of the week. Most doctors are fully booked Mondays, Wednesdays and Fridays. Ask your medical office which days seem to be less booked, and try to get in on those days. Another way to be heard is to find out if the doctor has a history of taking time to read a full chart before s/he sees you. Some doctors will ask for your records, and simply not bother checking through them before you're seen. Ask the NURSING staff of the medical office if the doctor has a set time of day to read through charts prior to your visit. If the doctor is NOT a chart reader, find a different doctor, or you'll be wasting your time repeating information that is already documented.

Do your research with the internet and determine if the doctor you are considering is aware of other patients who have a similar history. My friend will likely see a doctor I spent years seeing because the office is experienced in dealing with people with my condition. Her symptoms are so similar to mine, she can use me as a referral case. YES, letting someone share your doctor and saying "When you saw Cathe you noticed she was experiencing similar issues with pain in joints, a history of insomnia, migraines, and agitation, along with pain when eating." Letting a doctor know that you're aware of similar symptoms in a diagnosed patient can help lead her to the correct tests to offer, and the right diagnostic tools to use.

Don't let a doctor dismiss your history or symptoms. NOTHING is more frustrating than hearing a medical professional say, "oh yeah, that's going around, you'll be fine after a few days." The fact is, you may have similar symptoms as someone with a flu but Lyme Disease can hide that way. Gallbladder disease can appear as Irritable Bowel Syndrome. Hives and rashes can appear to be psoriasis, or it may be an allergic reaction. Being dismissed as having something "everyone else" is going through is probably why so many people are misdiagnosed for hundreds of illnesses. For instance, a friend who has narcolepsy was misdiagnosed as having depression. If your illness is similar to common disorders, then you MUST get your doctor to hear you by explaining that this is NOT situational, it has a pattern, and you have documented the patterns.

If your body temperature is 99, and the doctor thinks that's just above normal, having a record of weekly body temperature charts- showing a "normal" for you as 97.1, you have a reason to say, "Listen to why this isn't normal for me." My left shoulder and rotator cuff were dislocated for up to 8 months one year because a doctor kept trying to convince me it was "just muscle strain from carrying a purse." To dispute his comment, I showed him photographs of the shoulder in the normal position on a Monday and dislocated on a Tuesday, back to Normal on Wednesday. Then, since he was just too stubborn to believe photo evidence, I simply put the shoulder blade in a position that was apparently and obviously just plain twisted and then back into the sockets again. After his jaw came off the floor he finally admitted that it might not be a "purse strain" afterall.

Doctors seem to be under the impression that if a disease is in a magazine or on the news that month, we're going to be sitting in the office just to discuss that disorder du-jour. A great many people probably see a disorder and assume that their illness is "swine flu" or something similarly over exposed by the media. In fact, the influx of patients who are armed with Web-MD information has done a lot to discourage medical professionals from listening to actual patient history. But, if you are armed with a family history, a documented history of your own symptoms, and perhaps even a few testimonies from family or friends that state- this is not normal for you- you may be heard with a more sympathetic ear.

Doctors also have a deaf ear to the idea that medications they are giving us could be causing other problems that appear as illnesses. Seniors are victims of this almost rampantly, with blood pressure medications given to someone who is having side effects of cholesterol medication, and then antidepressants given to help battle the side effects of sleep medications. The side effects need to be documented as soon as they appear. Just by documenting side effects, I was able to reduce my medication list from 24 different prescriptions per day to 9. I had a diary of what happened to my body after what prescription was given, and was able to show a pattern of several effects that directly correlated with new medications handed to me to combat disorders that apparently don't exist for me.

My current doctor with the Veterans Health Care office sets up one appointment per hour. That means, she spends 15 minutes before the schedule appointment to read through my charts. When I sit with her, she goes over any tests that were returned, and we also view my weight and temperature history. We go through my menstrual history to see if the depression I have is related to hormonal changes. We do this at every appointment so we can verify patterns. Fifteen minutes of the appointment is her examination to see if there have been any changes physically, mentally, and even if my appearance has changed. The last fifteen minutes is about the current prescriptions, side effects, and changes that have improved or have become worse since medications are added or removed. I see her at least once a quarter due to my autoimmune disorder, and chronic joint dislocations. Because of the documentation in my care, she can easily see when there are decreases in muscle tone, increases in calcium deposits, a change in my general mood, and if my body temperature has steadied at any particular level. She listens and she pays attention when I tell her something isn't right.

My civilian doctor hands me 15 minutes total, including the time she views my charts. She is focused on blood tests, and doesn't fiddle around with small talk. In fact, I think I've said less than ten sentences to her in the four visits I've had this year. Her documentation of my blood work is pristine, but she probably couldn't pick me out in a crowd of people if I left my cane in the waiting room. Because she is all business and no play, I hand her documents of diaries of the changes in my body, physical changes, and even comments from friends and family. She notes these, and after a few weeks, I will generally get a call stating what she sees has changed. The care is not personalized, and it feels like Jiffy-lube medicine, but at least since the homework is done for her, I know she will read through it.

The worst listener is one who is so scheduled that he will only nod at you, tell you what your condition is before you have even opened your mouth, and will shuttle you out with either a pill or a "get some rest". You are a number that fills the quota for the HMO and nothing more. If you find yourself being told your illness before you've had any chance to utter a word, fire that doctor. File a complaint with the HMO, and ask for a history of any doctor you are considering , including references. Not all doctors are working for their HMO quota, and you may find the right one will be the one that has been listening since the days before Concierge and Managed care. Listen to your gut. You'll know if you're being heard. And, if any doctor makes you feel humiliated by your symptoms or illness, again REPORT that doctor to the health care provider. You deserve health CARE not health apathy.

Today's questions- Have you felt dismissed or judged by a doctor before you had a chance to explain your symptoms? Do doctors you see prefer to look at numbers, or are you considered more than the sum of your blood counts? What have you done to get your doctors to hear you, and really listen?

Medicare Scaring Us

2009-11-13T16:31:00.000-08:00

You probably have your new "Medicare Options" package sent by your Part D provider. Starting Monday, we're supposed to be able to manage our decisions for the following year. What every senior and disabled person battles for this decision includes-
No Increase on Cost of Living For Social Security;
Increase by up to 28% of the Prescription Plans available;
No Sanctioned Increase of Insurance Premiums
Decrease in Available Medicaid Dollars
Increase in Co-payments (ie. Walgreens $4 prescription copay for generic will be $5 in 2010).

Addressing the obvious first. This year we have more Veterans returning from war than in any time in history since Viet Nam. During the early 1970's, the increase of those who went on permanent disability due to war related illness, PTSD, and other trauma was NOT picked up by the Veterans Benefits, and instead was placed into the general funds of Medicare. Service connected and Service Aggravated illnesses and trauma are not all covered by Veterans benefits. That saps quite a bit out of the funds for those who are in disability or are retiring seniors. Veterans care is increasing the amount we must pay for our prescriptions, and are charging for services at VA hospitals where before these were considered part of the benefits of service aggravated or connected illness.

The VA Healthcare System is being used as the model for Public Healthcare, a huge political battlezone at the moment. The system is very strict regarding the type of prescriptions, treatments, care, and surgeries are authorized per patient. I know, I'm a Veteran AND disabled. I've been on both systems for nine years now. The VA doesn't bill my medicare for anything, but instead, although my information is shared with both organizations and the cost could be spread between the two, I'm out of pocket thousands of dollars per year.

If I want prescriptions that are not in the VA system, I need to see and pay for a private doctor, then pay for the prescriptions, hoping they are covered by the Part D Medicare. There are very few pain meds that are covered by Part D. For those of us with Autoimmunity issues and joint disorders, the catch 22's seem innumerable. I can use a wheelchair but Medicare won't pay for it, but the VA will pay for one as long as it's a replacement of one I used for more than 10 years and was originally Medicare paid. Okay. I can have splints and braces on my hands, but I can't get them remeasured unless I pay for the second appointment, out of pocket, but I have to copay the braces up to 80%, unless Medicare copays, which they won't because they weren't the ones who authorized the braces. Got it? Yeah, me either.

Before the Part D split, I could apply for a wheelchair from Medicare or VA and they'd split the cost, and I'd have a small copay. Now I have to reapply for a chair with both, and if one approves first, the other form is revoked, so I end up paying not only my copay but the copay the other organization would have taken over. See how this gets confusing? See how this makes no sense?

For those on Medicaid- a state run version of Medicare, you have to meet financial limits. For most people on disability, full disability, I mean, you make about $300 to $1000 a year MORE than you should to qualify for Medicaid. So the money you make from Disability, which is borderline poverty level for most people on it, means you are too rich for assistance from your state, thus making more out of pocket costs a mandate. There are people who qualify for SSI, who cannot quallify for Medicaid. There are people who qualify for SSD who cannot get SSI, (such as married people like myself). If anyone thinks this government insurance system which we paid into is a hand-out- they're very wrong. They don't get that mose of us on disability had normal working lives, and had to work at least 20 years to qualify. We aren't sitting around eating bonbons.

Those of us on disability spend hours in physical therapy, sometimes psychological offices, oftentimes trying to find out how we will survive from one check to another. Homeless Veterans make up the largest number of people living on the streets, and without a permanent address, these heroes can't qualify for benefits. They aren't asking for a handout. They earned their place in society. Minimum wage doesn't prevent an adult from living in a hallway or a bus stop. And, being homeless doesn't mean being jobless.

Here comes the time of year when those of us who are trying to manage just being able to sit, stand, or speak in cohesive sentences are handed a book of options. The options are supposed to help us figure out how we want the government to best allocate our funds to pay for medications which may or may not be covered on the Part D of our insurance. I am on Morphine, an antidepressant, and a sleep assistant drug. Only the Morphine is covered, via the VA. I cannot get it through my private doctor. Only the sleep med are covered through the private doctor. Because both are "Controlled Substances" I sign a contract with each doctor and both pharmacies pull my records to ensure I don't double dose. If a doctor wanted me on a different medication, I may have to wait up to three months if it isn't on the approved list. Knowing all of this makes it very difficult to simply check a box and mail a form into Medicare.

I don't have Diabetes, high blood pressure, or a myriad illnesses that come with age. I will someday have some of these, as is the family history. Without the Medicare assistance, the cost of my health is upwards of $500 a month, because I have VA assistance. Without the VA, I would have a cost of about $1200 a month. My pay is nearly just that. I would be a homeless Vet if I wasn't married.

I don't know how you live your life, but it is my greatest honor to speak with senior citizens. I know the struggles they face. I face them too. It is my greatest honor to meet another person in a wheelchair. I don't know what they do to survive, but I'm doing it too. I know I'll try to elect the right choice that offers me the most of my medications and allows me the smallest of dignity.

Today's questions. Are you disabled and battling the big Medicare Question? Are you a senior and not sure what to do with the lack of COLA? How will you change your medical care this coming year?

And here is the rest of it.

Tears and Empathy

2009-11-06T13:21:00.000-08:00

A lot can be said for a friendly cup of coffee with someone you care about. There's a lot to be said for people who just want to be heard. The issues that many of us who face depression come from places that are chemical, genetic, situational, and even diet based, can often be alleviated by being heard- really listened to- and through the shedding of tears. Sometimes I wonder if the answer to milder forms of depression area as close as the ducts in our eyes.

Tears that come from emotional release have a different chemical make-up than those which come from a reaction to an allergy, a response to an onion's odor, and just about any other form of crying. The emotional tears release a remarkable number of hormones in that salty flavored water. The hormone that produces lactation in women, prolactin, is higher in emotionally created tears. ACTH, adrenocorticotropic hormone, is one that appears to go haywire in people with adrenal issues. Lab numbers in those who have thyroid disorders, and adrenal disorders include measurement of ACTH because depression is so prominent within those conditions. Leu-enkephalin helps work almost the same way morphine does, by alleviating pain, and it is released in emotionally derived tears. When someone says, "You'll feel better if you can cry" they're not yanking your chain.

Like most people who have battled depression, I've gone from feeling as if the sadness was manageable, to feeling like nothing would ever be better, ever. And, like most of us who have depression, I was put on medications before learning if the illness was a manifestation of a side-effect of another medication, if the depression was a matter of female hormone fluctuation, or if it was a symptom of a bigger illness. The problem isn't always the doctors, but it isn't always the patient's either. It is clear that the medical profession has no idea what it is that causes mental disorders like this.

A couple of years ago, a university in North Carolina made it a point of describing Efficacy Rates of Antidepressant medications. Most of us are familiar with everything from Amytriptaline to Zoloft because we're given them to try out- not to see if the medication works for us, but to see if the side effects are tolerable. I remember that Lexapro, Wellbutrin, and Zoloft each made me feel like my skin was crawling, I was agitated, and that nothing was happening fast enough. Whereas, Prozac, Paxil, and Celexa were just making me swell up rather than calm down. I finally settled on SAM-E, partly because it was available without prescription, and partly because it seemed to have the same affect on me that Prozac had without the bloating feelings. I also could take it for a few days at a time, rather than weeks at a time, and feel just as fine. It's probably a placebo affect, but rather than argue that point, I accept that I feel fine on it.

But just as some people like chocolate, better than vanilla, some people prefer blondes to brunettes, some people are happy in the morning and others are night owls- none of us seems to have a single response that makes one pill the answer to depression. My husband shakes his blues away by running at the gym, or having a piece of chocolate. Both give him a satisfied feeling and he seems much happier- except when the chocolate is gone. If I started running, the knees would be so mangled after just a few steps, I'd be more depressed. His answer isnt' mine, and my answer may not be yours either. Except in the case of tears.

A year ago, Science Daily posted an article regarding the power of human tears. It points out that those who have serious mental disorders don't seem to have the same emotional release from tears, but those who are experiencing situational depression and sadness can feel better by crying. Yet some studies state that crying is gender specific- men don't do it, women do. That's simply not the case. The chemicals in depression that cause us to cry don't care if we're male or female. We decide if we are able to cry- in front of others or not- and sometimes our emotions are better accepted if we are female than if we are male. Women are "allowed" to cry. Men may just be better at hiding when they do it.

This comes back to the first paragraph, the title of this week's blog. Sympathy is the ability to feel something for someone based on your own understanding of the human condition. Empathy is the same ability based on shared experiences. Men who sit together and talk with a friend, a spouse, a family member- who need to feel human can and do cry. Women who want to share feelings, who can't express them verbally, and just need the release can and do cry. And, if you're like me, sometimes sitting alone at a beach, or taking a walk, or just being alone for a few moments gives you that key that unlocks tears. The cathartic feelings that flow with those tears are priceless. It can be moments of release or it may last for weeks, months, years. It's just a matter of letting yourself be empathetic- to yourself. It's not a cure for depression- it's just a bandage that life has built into our biology. Sometimes that bandage is strong enough to help us get past the roughest of slices into our psyche.

This week's question- What makes you cry? What do you feel like after you cry? Do you know men or are you a man who likes to let out tears?

Weight Loss Goals and Scams

2009-10-16T11:57:00.001-07:00

There are almost two internets- the "Lose Weight Web" and the "Porno-Net". Both industries seem to make more money online than any other. It seems that if we aren't concerned about what we're doing in the bedroom, we're freaking out about how people will perceive who we are there by our weight. The most frustrating thing for me as a woman is knowing that curves make the girl, yet those same curves are frowned upon by the media idea of womanhood.

This blog started a week ago when I started to research the pills, potions, sprays, gums and all that other stuff we're supposed to use to use to increase our metabolisms, lower our hunger, and discover the new skinnier self inside. I read blogs, advertisements, watched online videos, and even visited the top five "diet" sites- Jenny Craig, Weight Watchers, EDiets, SparkPeople, and Nutrisystem. Then I spent money.

I am one of millions of women who struggle with the idea that Selma Hayak, Queen Latifah, and Kate Winslet, three of the most beautiful women in the world, are called "overweight" by press. They are each shaped like Venus, and each have seduced the world with their beauty, and yet, I turn on the TV, and eveyr show, eveyr commercial, every newscast features some gal who is built like a 10 year old boy from the neck down, but has the correct Botox dosage, preps brows and jawline with the same aculine approach, and the head itself sits twice as wide and three times the thickness of her waist. I have a woman's body, and complain about it. Diet businesses know this and that changes it all- they get wider bank accounts and I am supposed to get smaller hips. HA!

Nearly ever site I went through came down to two facts- put down the fork and get off your butt. Anything that gets you moving is exercise, including house cleaning, gardening, playing with your kids and pets, and yes, sex. Anything that has a high water content- fruit, veggies, oh and this stuff called water- will fill you up and keep you from being hungry- with very little to no calories. You can eat ALL of the arugula you want, fill up on watermelon, and wolf down celery- and you'll be in better shape than if you reach out for the items labeled Drakes or Hostess. And, best of all- if you want a piece of something - do it. If you don't you'll have the "When I CAN have it, I'll have A LOT of it" going in your head- so having a little now and then is just dandy. Wow, a miracle! Weight in control!

If you're like me, you graze all day. There's a fridge nearby. There is also a sink, which has lovely water. If I start getting in that "bessie-moo'd", I wolf down the water first. Every site states that having a full glass of cold water fills you up and helps keep you from craving foods. Not buying that- I see chocolate on TV, and that's my thought like a bad song stuck in my head for the day. But I know that if I end up indulging, I'm too full to eat much, so it's at least better than having an entire cake. Alone. In the dark. Ahem.

People always said I was "naturally thin". "You can eat all you want, you're so lucky!" But I wanted to scream "I just eat ONE meal a day, it's all I can afford, and oh yeah... I have no dessert!" When I had a job that paid more than minimum, it's amazing how much weight I gained! I went from 104lbs to 119lbs. I stayed there for nearly 23 years, though. Why? Every time I thought I was going to go for something in the fridge- I was too lazy to make it. Then all of the foods in the world started coming in Microwavable containers. Suddenly I went from 119lbs to 127lbs. I stayed there for a full 4 years more. Then a doctor decided he needed to give me Wellbutrin, which ballooned me from 127 to 140. I was miserable on that antidepressant. I go off of it, and SHAZAM! back to 130.

Then a doctor gave me prednisone. I went through YEARS fighting with the mediccal community about the effects. I gained 60lbs in less than 3 months and they actually said to me, "you must have eaten a lot in the last few months". What, a car? This is written about in so many prior blogs, all I will say is, I'm working hard to lose that medically induced poundage, and I thought long and hard about the options. I also figured, as readers, you too may have struggled with the myriad options that are supposed to stop us from eating, make our food fat-free, and all of that. And this blog is my resulting conclusion.

I cannot financially afford Jenny Craig. EDiets has many "coupons", but again, their food delivery services are very pricey, and if you don't spend $300 a month on groceries as a couple, trying to reconcile paying that much for two weeks for ONE person seems ludicrous. Weight Watchers takes one addiction- food- and turns it into another addiction "The Program", so that doesn't sit well with me. I saved up three months and paid for three months of Nutrisystem- they deliver by the month, rather than week, like other programs. I lost 11 lbs, after three months, but the soy based foods and I were incompatible- I got very ill on them, and couldn't fathom staying with them much longer. It also led me to multiple meals a day- which turned out to be a bad habit. SparkPeople charges NOTHING, for nearly everything you get in all the rest, and you can use any method you want. I stuck with them.

When I got off of the cycle of having 9 meals a day, (thanks nutrisystem- meals and snacks inclusive), stuck to 1200-1400 calories a day, and moved a bit, the weight started coming off. But, like everyone else, I reached a "We ain't leaving" poundage. The infamous Plateau arrived. I stopped losing. I went to WebMD, my physician, and every website I could and came to the conclusion that the only "magic pill" that would help me would be Alli. In a weird twist- I started as a tester for their website years ago, and never took the pill because at the time, I was on prednisone, and not able to try the product. That, and it was very expensive.

I started taking Alli this week, and I'm still watching the portion sizes of everything I eat. I eat what I want, though, and that's never changed. I just eat less of it, which I have worked on for a year now. I drink a LOT more water- which I gather is the biggest problem in weight loss failure. Most people have no idea how dehydrated they are by drinking sodas and coffee and nothing else. Neither the hubby nor I drink alcohol so I don't worry about those calories. I do crave orange juice, but I drink half as much as I normally would and have more water. None of the side effects have touched me at all, and in fact, I feel a bit energized because the program requires vitamin supplements. In the last three months I already added calcium and D, which I will blog about next week, but the increase in the rest of the minerals has changed my skin, hair, nails, and even sleep patterns.

At 45 years old, I can't waste time on fad TV-toys like bouncing weights, and chairs that twist. I can't waste money on capsules full of hot pepper sauce or cinnamon sticks. Having a Niacin makes me blush, but it doesn't do much to burn off those pounds. The one product that I do seem to respond well to is Green Tea, which I drink whenever I crave sweets. If I am jonesing a cheese pie, or a chocolate cake, I'll have a cup of green tea, or a capsule, and I just don't feel hungry enough to bother with it. At night when I think I'm heading for grazing mode, I will pop on the tea kettle and relax with some chamomile. Tea is a great product for so many reasons.

I read every single ingredient in the "Fat Burner" pills and the only thing I see in all of them is Caffeine, a natural diuretic, which may keep you in the rest room, but doesn't really change your eating habits. I also see quite a bit of Niacin- which gives you a warm feeling, and the B vitamin is good for your mood but isn't the big deal it should be in flushing those pounds away. You either get antsy on these, or irritable. What's the sense in being grouchy when you're trying to look your best? You'll scare all the people you're trying to attract away from you.

Finally the "natural" juice products are an interesting choice. People elect to "cleanse" the body of toxins. Water does that, with the digestive system. Anything else is just hype. I even read a blog from a guy who was angry because people were calling liver cleanses "a crock". He claims people were upset because they don't understand the green waste was cholesterol, gallstones, or other such biology. He complained that the olive oil solution is misunderstood. You pass bile, waste, and it comes in all shapes and sizes. This guy was actually furious at people for not believing that the bile waste wasn't gallstones. It's not, but he was pissed. According to real science, none of those cleanses works the way they're hyped to do. Studies done on the products we pass prove that the appearance of the waste may seem similar to the stones visually, but the fact is- it's bile in different forms, and we just pass that naturally. You cleanse yourself by eating greens, drinking water, and letting time pass between red meat sessions.

Noni juice, Acai, fruit tape and all of that is working just as every fruit does. You eat fruit which has water, and fiber, and you will pass waste that also has fiber and water. It's nothing miraculous, and it isn't going to make you lose weight faster. If you eat that stuff instead of a hamburger, you've cut 300 or so calories, and that is probably what makes the difference for you if you believe that works. Grapefruit is shown to have a natural appetite suppressant, but if you add spoonfuls of sugar to the fruit, you aren't really helping yourself.

Go to Ebay and type in Weight Loss. You'll find the craziest methods known to man. And, you'll find that people are buying them. Conversely, there are women and men who cannot seem to gain an ounce who are just as crazed in finding the solutions via potions, pills, and magic powders. Get your thyroid checked. Test your resting metabolism. Get your blood work done for hormone changes. Most issues not directly related to what you put on the fork appear in those tests. Keep the Koala Fat and Kim Chi diets, I'll stick with the safe path of being wise about what's on my plate.

So this week's questions- What crazy things have you tried for weight loss? What is the worst food you tried as a weight control? Have you found that your age has much to do with your weight? What do you think your doctor does to add or detract from your weight control?

Attention Deficiency in Adults and Diet

2009-10-06T18:54:00.000-07:00

There has been an onslaught of news over the last twenty years on the progressive studies involving children and adults regarding Attention Deficiency Disorder. We've seen news shows, read magazines, and there are even ads in our children's magazines regarding the ADD, and ADHD diagnoses that seem to be part of every household, in every family. I was one of the millions who felt just sick and tired of the whole "disease of the week" fad attention, and really didn't want to care about it at all. To me, out of lack of experience, the disorder sounded like an advertisement for Pharmaceutical Companies and nothing more than an excuse to give children Ritalin.

But, I've experienced enough life to know that not all myth is fact free. I know that even those who think there are far too many medications piled upon us year after year see the increased numbers of people who are diagnosed as having ADD. And, I know that nutritionists have been screaming "PAY ATTENTION TO US! WE HAVE BEEN TRYING TO TELL YOU THIS FOR YEARS!"

Just out of my own curious nature, and through the study of depression, I found that several of the symptoms that are part of my daily life mirror those of ADD. And, I want to know why. I want to understand the reasons why I think I can accomplish much, yet spend most of my time starting much more. The irony is that I finish tasks for the betterment of others far sooner than I do those that would better my own life. I wonder if it hasn't always been this way.

I'm sure you remember sitting in school as a child. The years I spent during the 1970's were mired in distraction. I spent time drawing pictures and when other kids were trying to learn to spell or read, I was already on the fourth book of the week, bored, and waiting for something to happen that wasn't JUST school. If the diagnosis existed as commonly as it is today, it is likely I would have had the title of Attention Deficient. I spent more time with adults than children. I was writing and creating, and even spent days painting murals on chalkboards when other kids studied because my work was finished hours earlier. I ended up in "gifted" programs and spent weekends studying at the Museum of Fine Arts, Boston, in their youth programs.

I was fortunate for having people in my life who saw that I got easily distracted when bored, and they took the time to nurture the boredom into something productive. But, I spent a lot of time during high school, and in the college and Navy years, spending less and less time on projects and more and more time just being not sure what I would ever complete. The more options I had available to me seemed to increase the "mind float", that took me off to new ideas and new options. It was as if my entire years from the age of 19 to 31 were spent wondering "What can I do now?" and I would be antsy for hours at a time. Computers aided in just creating more reasons of distraction- more shiny balloons of time stealing.

The antsy feeling was so strong that I would take long drives to no place in particular. Some days I would drive from Los Angeles to San Diego, while others would have me visiting Palmdale or Temecula. There were days I spent nearly in San Francisco, only heading back when I realized, I didn't have anything to do there. I had always worked more than one job at a time- usually three full time jobs, plus school. In all of the years I was diagnosed and treated for depression, no one ever said to me, "Perhaps you have a lack of attention." I know I brought up many times that I was unable to focus and never felt that I could complete anything. But, no therapist confronted me with this. I tried to get them to acknowledge this, but it just seemed to be who I am.

When one of my doctors put me on Prozac, suddenly I was writing full books. I was able to complete projects. Suddenly, I was focused on life, and what I wanted to do with it. Yet, I developed an immunity to the prescription and it seemed apparent that there wasn't a replacement to keep me in that same state of mind. During the next decade, I spent hours in doctors offices, hoping that I could get back that sense of control, and understanding. Again, I never heard anyone tell me "You probably are ADD, and could do well with a simple diet change."

No one said this to me, yet it seemed when I wasn't eating sugar, when I didn't have coffee, when I was sleeping properly, I didn't need a medication to keep me focused. For only days at a time, I had clarity of mind, and certain completed projects. But, I'm fighting for my health, and I am desperately seeking some solution to the Hashimoto's and the Ehlers-Danlos issues. I keep reading the same websites that are pushing for me to try Gingko, and to increase my Vitamin D, and Calcium. I keep reading that my age has a lot to do with my attention span. But I think that's not exactly correct.

What I do see is the pattern of options growing, and my mind is desperate to play in every sand box it finds. I find that the boredom I had as a child, that was a result of comprehending things a lot sooner than I was expected to, has grown with me, and I spend days trying to complete a single simple task. I always did well in jobs that had multiple roles, and multiple outcomes. I did well in classes that led to even more opportunities. I did better in relationships and friendships that allowed me to see other views. In all of this, I still kept patterns.

The patterns of behavior carried from childhood include that day-to-day battle of "What should I eat that won't affect me and make me feel miserable?" I still wake up thinking of at least one chore that needs completing, and I complete it. I still find myself battling a game of solitaire, and wondering if I should be doing something different instead. I still find myself procrastinating on something that is important, or necessary, and I do this daily, as a habit. The pain from the illness takes away other habits, like driving for hours, or walking at a park. Every day, I can recite the same conversations I'll have, and every day I am frustrated at the lack of completion on any task.

Yet, when I finally conquer a blog, or answer that email, I feel a weight lifted from me. It's "good girl" me. It's like the days when I finished homework in school- when most days I did it AT school, just before handing it in. The last minute deadline made the work immediately rushed, and often I did just as well as anyone else, but I still wonder, today, if I didn't cheat myself out of an education by not taking time, and spending the hours I could have. Today I can spend ten minutes learning Spanish and an hour playing piano, when I could learn much more by spending hours on each.

I looked at my food diary. I don't eat perfectly well, and I haven't ever done so in my entire life. But, the days that I have attention-drift are the days that I sneak in that doughnut, or have candy. It's the days that I haven't had enough protein, and haven't had any vegetation of any kind. The days that I drink less than four glasses of water seem to be just as bad for me as the days that I take in three cups of coffee. The calorie range is always and has always seemed to be in the 1200 to 1400 range, but my weight doesn't reflect that 120-140 lbs that should result from that range. When I feed my body poorly, my mind is also affected. It has to be, as it runs from the same engine.

My medicine cabinet contains minerals, vitamins and supplements. But, I'm not great about taking them regularly. I can tell you by looking at the birth control pill circle, when I am going to have my Irrational Days. This is part of my PMS that I am able to predict simply by watching the hormone levels. But, I don't have the same type of gauge for my lack of attention. I do know that I sleep better when I've taken Magnesium, Vitamin D, and Melatonin. I'm reading nutrition sites, and I keep running across the same diet deficiency. I need to increase the produce in my diet. I need to increase the proteins in my diet. I need to ensure that I am not eating the sugars, and caffeine, and that I have regular and correct liquids. I need to ensure I'm eating as well as I make my pets do- I need "People chow".

Since that doesn't exist, I am tasking myself with being parental to, well, to me. I am the one who has to regulate my eating habits, in order to help alleviate those drifty days when I just can't seem to accomplish things. It's up to me to discover if I have patterns that change based on the foods I've eaten. With all of the options, I have the ability to transform my eating habits easily. It doesn't have to be expensive to care for myself, as much as I want there to be a single pill to fix me. It won't. I need to be responsible and care for me.

Pharmaceutical companies want us to take Ritalin, Prozac, Paxil, or any of dozens of other compounds to cure us of our own human nature. In my case, I'm naturally drawn to distractions and bore easily. Yet, if I give myself the time and care for myself well, I do finish things, and I do complete projects. I don't have side effects, and I don't need a Prescription card. I just need to eat properly, sleep properly.

I think we can learn much from house plants in this. I bought many new plants when we moved into our home last month. I have seeds, and pots, full plants, and cacti. I noticed some house plants do better if they're started as seeds indoors, groomed to a specific growth, fed a bit of water, and then brought outdoors. Others are very difficult to raise from seedlings, and need to have specific light, specific water, and some require plant foods. But if I stray in the slightest way from the necessary nutrients, water, or day light, the plants wither. If I offer too much, the roots soak, rot, and die. If I offer too little, the plant starves, becomes weak, and dies. If I am inconsistent, the plants may grow well but suffer long term damage. Just like plants, each of us has our own requirements, and it takes time to discover what the right formula is for each of us.

Just like the cycle in my pills helps me figure out what days I'm less rational, the cycle may also help me focus on what days I need more proteins, or water, or green leafy veggies. There may be days when I'm not very well focused that I stray from caring for my roots properly- and it will have long term affects. So it is up to me to develop a consistent pattern, and a method of ensuring that I'm faithful to my own care. For me to be a focused, clear, attentive person, it's up to me to find the right combination that allows me to flourish. It's taken me 45 years to learn this, and it may take another few years to find the right combination of foods, but I will.

So today's questions- What patterns in your life do you attribute to diet, or sleep problems? Do you know if you have ADD or ADHD, and if so, have you taken medications for it? Do you think that diet is able to replace medications for us in general, or just for specific illnesses and disorders? What foods do you feel are the biggest issues for us and our mental acuity?

Give Me A Break

2009-09-28T19:07:00.001-07:00

It's hard to handle all the stresses of a life filled with layoffs, debt, foreclosures, and should I add children? We watch each other with cautious eyes, wondering who will be the ones who cut us off on the freeway? Who will be the ones who take our jobs if the company rehires again? Who is the teacher that will be deciding if we go forward or step back? Why can't we get through the month without cash advances, or will there be a check at the end of the month? Don't we all just need a break?

The recent increases seen in the number of people visiting 24-hour clinics, the increase in the number of those entering emergency rooms isn't based on the flu or the season- it's based on stressed related illnesses. Post Traumatic Stress Disorder, (PTSD), once assigned as the psychosis of soldiers, is now believed to be on the increase in those who have had multiple layoffs. The fear and stress is so great that people who are on unemployment are afraid to try another job. Those who remain also fear the ax, or worse- they carry the guilt of being able to remain in a career, wondering if they will feel retribution from a former co-worker. No one feels financially safe in a time when foreclosure rates are higher than they've been in history.

But, even the every day life that isn't filled with imminent drama seems to be overwhelming. In the last thirty years, we've gone from a society that is able to communicate verbally, attend social events, and allow our children to play with each other, in public parks, or even in our own yards to a new world of Social Media, Wii Gym Class, and "smart phones". Our ability to communicate has decreased with a great increase in tools that are invented to help ease communication. Television isn't just a machine for entertainment, it is now a programmable recording device, takes in hundreds of options, and expects us to understand "on demand" and play lists. Even a Sunday drive has changed from loading kids into a car and meandering across town to plotting on GPS, adding DVD's to the mix, and perhaps self serving at a gas station, while driving through a restaurant. We can't relax anymore even when we try.

This is the beginning of a new revolution. The stress related illnesses are creating a public that relies on the latest and newest fad fixes. The vitamin industry is seeing a surge in sales. Late night television has a glut of stress reduction programs, exercise programs, sleeping programs, and we're still stressed. The revolution isn't going to be in purchasing new items that fix us- it is the idea that we're better as people when we aren't attached to all of the gizmos and technojunk and all of that which takes away our humanity, that we can still be people.

That sounds a bit hippy-new-age-froo-froo for me, right? Well, it's a fact that I spend at least an hour a day sitting quietly with my pets. It's a fact that when I'm anywhere near the ocean, I take that drive directly to the beach, sit on my favorite rock and find a moment to scream or cry, or do what it is that needs to be done to remind me that I'm able to control that one moment of nothing for just that moment. It's mine to have, no one can share it, or can steal it, and it's mine for as long as I need it. When I moved hundreds of miles away from my beloved salty seas, I found that I could still take a walk, move towards a valley, find bliss in taking photos of places that were never part of my life until I discovered them.

Sometimes those moments come in traffic jams. You listen to songs on the radio, or CD's, or MP3s, and you find it in you to belt out the tune as loud as you can. I do it too. Sometimes the moments come in unexpected packages- neatly wrapped up by memory and time, and you find yourself laughing at something silly you wrote, or something a child says, or something that you think is odd about life- but you laugh. I do it too. Sometimes the moment comes in just a glimpse of unexpected joy. You see a flower as it just starts to bloom. A shooting star flies above your head. A rabbit walks in front of you in the quiet of the day and you get that life is bigger than the computer and the remote.

For me, stress disappears when I make people laugh. It disappears when I sing. It vanishes fairly rapidly when I write, or read, or become part of a drawing that I sketch. This is the revolution. This is the break. "Break". As a noun, my favorite descriptor is listed as number 72. "a sudden dash or rush, as toward something". We rush from the stress, and take the dash - the moment-the minute sprig of time itself, and become someone who wants to head towards something. We make our breaks. If we don't embrace the revolution of leaning towards our own moments of freedom, we become the stress that makes us sicker. We need to break from that which is perception of need, and embrace our real need- our humanity. Stress kills. None of us spends time in hospitals because of feeling wonderful, free, and limitless.

Those of us who battle chronic illness, pain, and mental distress can still find moments of that revolution. Laughter is something an infant can embrace as strongly as a senior battling Alzheimer's disease. Music is shared between the instrument and its master- whether she be a deaf dancer, or a blind singer. Five minutes watching fish in a tank is said to soothe those who have panic disorder, and six minutes of singing is supposed to calm the grumpiest of moods. Kids who have autism respond to water, or sitting on a horse, or petting a rabbit, just as seniors who have dementia respond to gentle tones, and soft warm breezes. Everyone of us has a trigger for stress, but at the same break EVERY one of us has a trigger of release. It's a choice to be part of the revolution that embraces that break.

The failure in our government is the removal of arts from our education, and the loss of public parks. If we rely on government to rescue us from stress, we're seriously deluding ourselves. We can't rely on city, state, or federal rescue from the world that has changed into a techno-planet. We can only rely on our ability to realize there is life beyond the electronics and layoffs.

We need to create our own arts, our own music, our own beauty. It's up to us to be responsible for the beauty of a garden or the treasure of an orchestration. If we let go of the expectation that these things are required to be available to us, we will start to respond by creating. We will be singers, writers, poets, actors, artists. The laughter lies within, and not by mandate. The government removed the arts from our lives, so its up to us to embrace them and share them with others. We can take a cue from the USO, (http://www.uso.org), which is a private organization that gives breaks of laughter, music, art to those who are battling the stress of being in the military.

We can only live our dreams if we give ourselves permission to dream. This means refusing to let the stress take us in. This means refusing to be part of the non-stop technology that is so infused in our lives that we cannot even write a check to a store anymore. This means not relying on the government, or any other entity, to decide or give us those moments. It's up to us to shut off our experience with the pain and stressors of life, and to allow the enjoyment of the smallest of moments, (the smell of a crayon, the sound of a childhood song), to take us to a place of calm. When we accept that stress can be countered by calm moments, we have truly become revolutionaries. You have permission to laugh. You have permission to breathe freely without strings attached. You have permission because you are human and that's all you need to laugh or feel. It's a novel idea, and we should all embrace it. Maybe we'll see fewer doctors. Less bills sounds like a whole new level of stress-free life to me!

Today's questions- Has stress affected your health? Do you find yourself taking breaks from your day? What do you think would be a good way to add a moment of freedom to your day? What do you miss about childhood that you think was a release for stress?

The Question of Cancer

2009-08-31T20:20:00.000-07:00

When I wrote a veterinary blog, the most common question I had was "What IS this tumor on my pet-what is cancer?" With the passing of Ted Kennedy, the Senator and friend to most everyone he ever met, the magazines and periodicals are putting out information relating to brain cancer. Recent studies, showing that Prostate cancer is greatly over-diagnosed, are making rounds in the health columns. Stores sell pink products in support of the efforts made by the Susan G. Komen Foundation against breast cancer. The common tie to all of this is many people just know that "cancer" is the bad thing that kills people, but what cancer really IS seems to be lost in the headlines.

Cancer is a term given to cells in the body that grow and absorb other cells which in turn grow and absorb other cells, and the growth continues until the cells become toxic to the body. Cancer cells become toxic to the body for a few reasons. First, some of the growth happens so quickly that the function of the organs, bone, nerves, or blood vessels stops, and the body cannot work properly. Another way cancer cell growth becomes toxic is when the mass is so large that it ends up carrying its own blood supply-- so much so that other parts of the body lose oxygen, nutrients, and enzymes, and dies little by little, until the body ceases to function. Another way cancer becomes toxic is when the location of the growth interferes with key body functions, and the body cannot heal itself fast enough to battle the cell growth.

Tumors and lesions are not always "cancer". The shape the cells take, and the manner in which they grow are the key differences. Almost every human, at one time or another has a bump, lump, or growth that is certainly not a cancer. Warts, cysts, clogged pores, and nodules are not always cancerous, but sometimes lead doctors to watch for signs of future possible tumors. When a woman has a mammogram and a lump is discovered, it is usually cause for further testing. Some women have fibrous tissue, "dense breasts", and false positives for cancer. But with the proper follow up exams, cancer can be ruled out. Proper care makes the difference.

Cells that trigger to grow at a different rate than neighboring cells change shape, and density. Some of these cells become solid, others become soft. Softer cells are generally benign tumors, or appear as abscesses. Other soft cells end up appearing as lesions, that appear as openings, rather than lumps. When lesions occur, doctors are likely to assume the area is cancerous rather than benign. A benign tumor is likely to stop, lessen, or reduce growth after the correct treatment.

So what treatments stop the growth of cancer cells? Why is it that cancer seems to elude cure? Science reveals the key factors lie in genetics, chemical and biological influences, age, time- the issues that cause cancer in one person may be an entirely different in someone who has the same type of cancer. There are correlations that some women who have a cervical virus can develop cervical cancer later in life. There are some correlations with those who smoke developing lung cancer. Not all women who get cervical viruses, nor all people who smoke, develop cancer. If cancer held a definite cause and effect then it would be far easier for medical professionals to cure or eradicate the disease.

Cancer also seems to carry a clock. For some people, the clock is set to be fast, while others seem to stop. The remission of cancer happens for some but not others. What is remission? For some reason the cells that are eager to grow turn off that growth. Remission is the period of time that the cells stop growth. The period of time can be weeks, months, and for some the growth stops altogether. Most cancer treatments are designed to put those cells into full remission. Remission means there is always a stronger chance that the cancer will return later on, than for those who have no cancer at all.

Some patients have surgery. Areas of the body affected by the growth are removed, along with healthy cells nearby, in order to stimulate the growth of the healthy cells. Medications, or chemical-therapy, (chemo), are blended together to cause cells to stop growing. When chemo is combined with radiation, the 'bad' cells are killed off. Since the body has a weakened immune system during chemo, it doesn't fight against the death of the bad cells, and the body can begin to heal.

But other treatments are starting to come to play, in the advances of bone marrow and stem cell transplants. The concept behind these treatments is healthy cells that have the function of growth and support of healthy cells will replace the bad cells that are attempting to take over the body. The advances in this research over the last decade are vast. Even those with breast cancer and lung cancers are seeing results. It isn't the cure, but for some it means full remission.

There is hope that some day a "cure for cancer" will exist. It will likely have to be a genetic change as well as a chemical or surgical option. Because so many varieties of cancer exist, and so many causes are discovered, scientists are attempting to find a way to turn off the genetic factor that tells cells to start growing in the first place. The biggest struggles come from learning how to turn off the bad cells without stopping the growth of healthy, good cells. Biologists are learning from species which appear to be cancer-free, including sharks, as to what the genetic difference they carry that we could adapt for ourselves. The answer may be just one discovery away.

Life expectancy for those who have cancer is greatly different than it was just twenty years ago. The care for those battling the disease has greatly improved. We aren't killing the patients with the treatments as often as we had in the past. We are learning how, as patients, we can reduce our chance of contracting cancerous cells by eating the right foods, avoiding sun, refraining from smoking, and avoiding chemicals in the workplace. We screen for lumps, polyps, and lesions, and doctors are better trained at finding the cells that will result in cancer. Our awareness is greater, and our doctors are better educated. Until there is a cure, this is something we must rely upon.

This week's questions- Has cancer affected your family or your life? Have you discovered lesions or tumors and had them turn out benign? Do you feel the government should support medical research if it involves stem cells? Do you think private labs will discover the cure for cancer?

Public Healthcare in the United States

2009-08-12T19:29:00.000-07:00

The issues of Public Health seem to spur more than just passion from people who haven't actually read the latest plan. It seems to be bringing a near "Red Dawn" scare in those who lived through the Cold War, a taste of McCarthy Era panic, from those who don't comprehend socialized medicine. And for others, it's a desperate plea to finally find a way to get care into their lives when they've had none. First of all, I want anyone reading this blog to READ the plan before they assume any positions on the matter.

It's hard to make an informed decision unless you really understand the points being made. The fear is that we will have huge tax increases, that our choices will be limited. The fear is that those who have chronic illnesses and those who have terminal illnesses will be excluded from the plan. The fear is that those who have private care will no longer be allowed to keep the doctors they have. The fears are enormous, and largely fanned by a media pool addicted to dramatic town meetings. The media isn't showing those discussions that are allowing people like you and me to ask questions and get answers. The media isn't showing the number of letters responded to on both the President's websites, nor the letters written by the Senators and Congressmen who try to explain the facts from the drama.

I do see the issues that have taken place in the Veterans Health Care system and with Medicare that have caused people undue hardships. These are both well documented over years, and with my personal experience in both programs I also have found some of the issues are infuriating. Mental Health, especially, seems to be poorly funded and the issues with those who have long-term illness are often mired with red tape long before care is recieved.

But, both programs are run without the sky-rocketing tax increases threatened by fear-mongers who assume that the Canadian and British taxation that pays for those country's health programs are similar to what we'll experience. It's just not going to happen that way. With nearly 50% of the American public on either VA or Medicare, Medicaid, or other governmental programs, we have a long term history of not using our tax dollars on these. Our construction bonds, military spending, and now "bail out" spending has taken a far greater percentage of our tax dollars, and education, once a larger pie slice is now whittled away.

Be educated about the plan, and you'll see there are faults, but there are benefits. There's not a stipulation stating that those who have private care MUST convert to this program, although I've heard both reporters and politicians state this. Several key points seem to rely on the "Once the Program Is Running" solutions to imminent issues. There is just no way to have millions of people under one system without bumps, potholes, and even traffic jams on the road to the change. There hasn't been such a large scale change expected of the American public since the days when we were allowed to go to gas stations only on odd or even days. Be aware there are going to be problems, but don't be afraid that you will be expected to solve them, or that the solutions lie in your paychecks. We'll all be adjusting, even those who are not electing to take part in the program. And, just be aware- being part of a Socialized Health Care System does not make you a Socialist, which also seems to be the war cry of those who haven't read the plan.

The program is expected to change the way we get our care, but it hasn't fully addressed the FDA, and I believe this is a key gap in the idea. We have had a governmental program in place to protect consumers against failures of medical treatments and pharmaceuticals, but the length of time and the manner of the testing doesn't seem to address the failures of drug companies to work towards healing ALL people, rather than those who will provide the largest dollar amount to the trustees. Until that issue is completely, and honestly addressed, we simply don't have any chance of Universal Health Care. A child with Down's Syndrome deserves the same medical breakthrough research as someone who wants to look younger on television. Yet, there isn't anything in the new plan addressing this.

Whether you support Democrats or Republicans, or if like me, you prefer to remain label-free, you don't have to use that label to determine your agreement to the plan. Libertarians will disagree- by the nature of the beast having one more governmental program is completely against all they stand for, but the concept of choice isn't lost on them either. This is still the land of the free, and the home of the brave. We are part of a growing problem. As Los Angeles and other cities have events that bring thousands to the doctors' office for the first time in some lives- the fact is there are millions of people who have had no care. Ever.

As much as we'd like the government to stay out of our personal lives, we've built a long-term relationship of reliance. The war exists between those who work hard and get very little and those who don't work at all, and get everything handed to them. The word "Free" is a four-letter f-word that inspires hate in those who are tired of seeing people abuse the system. But, the fact- another f-word- exists that there are millions of people who are living paycheck to almost-paycheck. Millions are out of work because jobs are sent overseas. Millions are out of work. Period. The biggest population growth in the last five years is in the senior population and jobs for seniors are harder to obtain. Age descrimination exists in the country obsessed with youth.

We can pontificate the issues of birth control. We can claim that illegal aliens are the reason for the full emergency rooms. We can spout on about the failures of corporations in the concept of employee retention. We can disect the issues of the bad financial management. The country is full of thieves, and it's full of poverty. The fact exists that people are struggling. The fact is people are the country. We, The People. If we deny care to one, we have denied care to all. Pointing out flaws doesn't solve the problem- it only states obvious issues. In the ideal of a country based on the dream that anyone can succeed if only given the right tools- the tools may be something as simple as a pair of glasses, or as complex as surgery for spinal bifida. And, the fact remains, an educated person and a healthy person provide more to a society than one lacking both.

Today's Question- Do you feel comfortable discussing the health plan with peers, family, or employers? Have you read anything about the plan before, and if so, do you plan to note your objections or agreements with your political leaders? Where do you see the health care program in 5 years?

Genetic Anomalies

2009-08-03T18:31:00.000-07:00

Very few of us get the opportunity to speak with a genetic specialist, yet doing so can help prevent years of pain, and even give us the clarity of vision for our future health. In the last 18 years, genetic medicine has changed lives. Adopted children who have no contact with birth families can get a better idea of the medical history of their family tree. People who have parents with history of cancer can now treat far earlier. People deciding to be parents can determine if their genetic combination will lead to complications in a child's life, and therefore can decide to adopt instead. Prenatal care becomes a matter of less invasive procedures, also includes statistic genetic evidence of possible issues in the fetus. Those who are unsure as to why they are experiencing mental health issues now have a clue with the genetic tests that reveal a serotonin issue.

But, genetic testing isn't part of the normal medical screening done by family practices. For today's blog research, I've found there are no HMO's or PPO's that put "Genetic Testing" as part of the routine care for pregnant women. When people start to show signs of Alzheimer's, joint diseases, or even depression, there isn't an obvious step by physicians to screen for genetic anomalies. The cost is listed as too prohibitive. Yet, the dollars that health care systems can save simply by ruling out genetic illnesses, disorders, or even traits for future generations could mean millions saved in health care costs- per patient.

This week the National Institute of Health released information about a genetic factor found in those who are experiencing major long term depression. Millions of people aren't even treated for depression, and instead get misdiagnosed with other disorders because the symptoms of pain, lethargy, appetite change, sleep loss, and weight change can be traced to other illnesses. And, those who are actually suffering from Cushings Disease, Adrenal disorders, pituitary illnesses, and other disorders are often misdiagnosed with depression and mental health issues. Knowing the genetic marker for depression is a leap in proper diagnoses.

Genetic markers exist for Tay Sachs disease, Huntington's Chorea, Polycystic Kidney disease, Hemophelia, amongst other rare and not-so-rare disorders. Early detection can not only arm medical professionals with the tools needed to treat and heal, but the patient can be forewarned regarding any impending issues based on a genetic probability. And, testing for genetic markers can help to find out if patients have single gene issues, or polygenic disorders.

The single gene issues include Autosomal Dominant which means just one copy of the gene marker can create illness. One parent contributes to the issue. In the Autosomal Dominant marker, there is a 50% chance the child will inherit the problem. In Autosomal Recessive genetic marker, both parents must contribute a malformed genetic marker for a child to have an issue. Cystic Fibrosis is an example of Autosomal Recessive, and Huntington's Chorea is a Autosomal Dominant genetic failure. Knowing if a genetic marker is X and Y linked dominant and recessive in a single gene can help define if a male or a female will have the disorder. Muscular Distrophy and genetic male infertility is discovered via the X and Y linked markers.

Maternal Inheritance, found in Mitochondrial DNA, is a method of measuring issues mothers can pass on to embryos. This form of disorder is much less likely, and only exists in the rarest of genetic disorders. But, Polygenic issues can arise in many instances and can lead to the discovery of heart disease, cancers, diabetes, and other more common illnesses. The screening of polygenic failure can not only save lives, but again, millions of dollars in health care costs.

The Human Genome Project offers insight into thousands of issues that can be treated once found through genetic screening. However, there are not cures for all genetic disorders, and some issues don't even have known treatments. This raises the question of offering screenings to those who cannot be helped. Does the cost of the test include the fear that comes along with it? Do you warn a patient about impending illness if there isn't any way that the patient can help herself? Is there an ethical issue involved in these tests that counter the oath of "First Do No Harm"?

I am a patient of a genetic disorder. My parents showed no obvious signs of the joint condition that leaves me in a wheelchair or in unbearable pain. My grandfather on my mother's side has obvious signs of Marfan's Syndrome when you view his photographs. The clues include a sunken chest, tall lanky frame, and long spindly fingers and toes. He also died of a lung illness, battling the disease from the time he worked as a coal fueler on the railways as a young man. Although I didn't show severe issues until I was well into my 30's, knowing that I could help prevent some of the damage that results in my current condition could have been useful. In fact, years of misdiagnoses could have been averted all together.

With the NIH commenting this week on the discovery of the "depression gene", there is an upcoming event where hundreds of medical professionals will discuss the issue. The European College Of Neuropsychopharmacology meets in September in Turkey, and will discuss treatments options, genetic testing, and other key points in helping not only to treat but to cure mental illness and depression based on the genetic findings. A program at Louisiana State University will study issues with genetics and brain functions, primarily of depression, through a grant received in the last two weeks. There is hope that the knowledge will lead to a cure.

Today's questions- Have you ever undergone genetic testing? What do you feel is the best use of Genetic Testing? Could you see medical organizations adding this as a preventive measure for patients? Do you feel the costs of knowledge outweigh the price of the test?

Psychological Fail, or Fair?

2009-07-13T19:04:00.000-07:00

In the last thirty years, the mental health industry has shifted from the idea that patients can talk through their issues to a push of managed medicines. I've been highly suspicious of psychological programs for as long as I can remember, and as a teen preferred a "brain doctor"- the psychiatrist. The biggest issue I have with psychology is that the studies of the human mind have swayed from that of comprehending, and resolving issues to that of placating and adding the concept of generalizations to the point where we have psychologists running lives via television, and people blindly believing in all these people say without question. There is a drive by managed health care to keep people under umbrella diagnoses, and we, as a species, don't always fall smartly into categories.

You can surmise I'm not a fan of Dr. Phil. This person has crafted his manner of generalized pop psychology to the detriment of anyone who believes or is easily swayed to believe that s/he is suffering a psychosis, rather than simply experiencing real life issues. If Dr. Phil has a show about bad parents who are cruel to their step children, suddenly mental health clinics are filled with parents and children who are frought with issues brought up by the television show. In fact, all families are dysfunctional, and all families work through quirks. The same goes for Dr. Laura- who has somehow managed to bring women to tears believing that they lack the skills of a Donna Reed 1950's TV character and therefore should be ashamed, as women. It's just not a realistic expectation- our mental health experts must be aware of individual needs and not so eager to label people through conveyer belt psychology.

In the United States, the word "therapist" is greatly abused by those who are not licensed through medical boards. It takes a business license and not a history of education, years of experience, nor reviews of peers to wear that title. This is why you can look through any phone book or search engine and find therapists who only use "Color Wheels", others who use "Smudge Sticks and Reiki", and still more who are "life coaches". Psychotherapy is the notion that you and your medical professional work to find a common goal of mental wellness, or at least a position of mental strength so you can live a life as normally as you wish. I've said this numerous times- My Normal isn't Your Normal, nor should it be.

Last week's post was skipped due to the inundated news wire sources that were focused on the mental state of Michael Jackson. I did not know the man nor do I know of his life other than what the media portrays so I have no comments on his state of mind prior to his death. I did read that one of the children was made to speak to a mourning fan base at a memorial, and again, her normal is not my normal so I don't know what damage this did to her, or if it was just another day in the life for her. Yet, pop psychologists all had commentaries regarding the life of the children, the man, and the family. I will not make any conclusions because I lack the knowledge to do so.

I do know a bit about the changes in the field of psychology over the last thirty years. In the late 1960's and early 1970's, a revolution of sorts was started by the increased use of antidepression medications. There was a time when psychiatrists would sit with patients, and take the time to learn about their illnesses. With the return of veterans from Viet Nam came the increased studies of prescription medications. By the mid 1970's, Prozac became a household word. In the 1980's, the release of seratonin and neurotransmitter based drugs were not only prescribed by the psychiatric professional, but by the general practitioner, the gynecologist, and DO's. And, television commercials have increased our vocabulary regarding Uptakes, Inhibitors, and Blockers. Children are now versed on Ritalin and Risperdal as well as they are Flinstone Chewables. We are prescribed mental wellness, yet we have no long term proof that every drug works for everyone. Just as we have no long term proof that one form of psychology is the best for all, yet we are often find that psychologists place cookie cutter expectations on our mental health.

How do you know you are receiving proper mental health when the methods of assisting seem to come not from medical journals, but from magazines? Everyone has times in life that are stressful, or too painful, or even times that seem to change who we are. Job cuts may make a calm, relaxed man turn into a scared, unsure boy. A divorcing couple may experience entirely different responses to the event- one partner may be relieved and feel elated, the other may feel grief, remorse, or even self-blame. A child who fails at class task may become self destructive in other ways, and yet another child may use that failure as a challenge. How do we get the right mental health for our conditions, and how do we ensure we are getting medications when we truly need them and not just because a doctor was swayed by media and sales pitches?

First, realize that a psychotherapist, a psychologist, a therapist, and a psychiatrist are each different job titles for completely different reasons. You may find that just talking to someone will help you clear your mind and see what it is that is causing you stress or pain. For this you would do well with a therapist, social worker, or psychotherapist. You can speak to each one for far less than you would a psychologist or psychiatrist, and you can expect the time spent will be shorter.

A psychiatrist is a medical doctor who studies the disorders of the mind, just as a cardiologist studies the disorders of the heart. For years, the amount of time alloted by patients to see psychiatrists has greatly been reduced, and some Managed Care programs only leave you with 15 minutes per quarter to talk about medications and side effects, and nothing more. Although a psychiatrist is most skilled at determining a prognosis between neuropathy, psycopathy, and psychosis, the patient to doctor time is limited. If you have a true mental disorder- hear voices, believe two people live inside you, or even believe you are the sole being on the planet and the rest of us are your imagination, if you are two people inside, and just can't win an argument with either one- you probably need a psychiatrist, but will likely see a psychologist because of the health care system.

Psychologists go to graduate school, some are PhD's and can use the title Doctor. Some are specialists, and I find those who specialize are likely to be better aware of particular illnesses, but may label all who come to them with that illness. The meaning of the word Psych-ologist means LOVE of the Mind, not scientist of the mind. So they have definite ideas of people, thoughts, and reactions. A psychologist whom I find to be greatly helpful may be someone you think is completely off base and not worth speaking to- and that would be great if it happened more often. Unfortunately, managed health, and insurance companies, limit who we can speak to and about what, so we may find ourselves in the office of a very religious, or polar political opposites to us, and we are expected to speak comfortably to the professionals due to a title. This isn't good medicine.

We need to have the ability to interview our mental health professionals as we would any employee we would hire. We need to find ourselves at ease in their company, and in complete trust of their abilities to understand who we are as people. If they can comprehend our manner of thought, then they are better equipped to help us be our best "normal". We don't need them to simply label us, package us, and send us out on their mental health conveyer belt of "cured" patients. We shouldn't feel manipulated by our therapists into thinking that their version of normal is ours. A good psychologist understands this. The problem is very few good psychologists are available, and far fewer still are able to fit us into their schedules.

Ask your mental health professional some questions to find your correct fit- and you will probably find yourself without a handful of pills, and with a better sense of self.

1. Do you have any qualms talking about sex, or other intimate topics? -Your care may depend on the ability of your professional to speak as freely or as infrequently as you do on this.

2. Can you tell me what experience you have with...- then fill in the blanks as to what you THINK may be the reason you're not feeling your version of normal. For some, it may be self-persecution, for others it may be narcissism. Be very clear about what you think you are going through- even if you think it may be wrong. The better you are at understanding your needs the better the professional will be in assisting you with them.

3. Will you expect me to be in group sessions for my issues? -Some professionals find that patients with similar issues, backgrounds, and needs do better in group situations. Others find that groups are a failure of self-discovery. Be clear in what you expect, and don't accept a group session if you feel that it's not what you want.

4. Can you be reached in case of emergency? -Many mental health clinics expect you to visit an emergency room rather than speak with someone who is aware of your situation. If you are going through a personal crisis- career, health, marital, et al- and you know you may have cause to call a mental health professional during this time, ensure you have a way to contact someone you feel most comfortable with before you are handed off to an emergency room.

5. How long do most of patients stay in your care? -Some mental health professionals believe that people with issues of the mind will have them for life, and others think that most are situational. Decide if you're getting into a marriage, or a short term relationship with this person.

6. Do you often give prescriptions to your patients, or do you prefer other methods of treatment? -Learn this from the start! If you don't feel your problems will be solved by a drug, studies have shown that you are less likely to have positive results. (In fact, the FDA studies on a majority of psychiatric medications show that the efficacy rates of antidepressants are no better than placebo in many trials- be sure you understand medications!)

7. Have you published any works in your field? -Get to know your doctor before you get to visit him. If he writes about fetishes and abuse, chances are your treatment will focus on such things.

8. Do you take part in clinical trials? -This is a huge question many doctors will not answer right away. You may be pressured into taking a particular treatment simply because the doctor is involved in the research of that treatment. Do not walk, but run away unless you want to be involved in the studies.

9. After the treatment, is there follow-up care? -Can you come back to the mental health clinic if you have any relapses and if the issues you face seem to return? Many doctors sign you out of their care and completely out of their practice. Ensure you have the right to come back if you need to.

10. How many visits does my insurance cover with your office? - Be SURE to ask this question. So many health programs limit mental health coverage by the number of visits to ALL professionals. For instance you may be alloted 10 mental health care visits a year. This must be shared between a prescribing psychiatrist, a therapist, and a psychologist.

Keep in touch with your insurance, or state care agency to learn what mental health options are available to you. The United Way, for instance, is a private organization that maintains databases of sliding scale or free mental health clinics. Do your homework before you walk into the door, as much as you can.

Today's questions- What have you noticed as a patient in the change in mental health care? Do you find pressured to take medications when you don't want to? Do you ask for medications and aren't given them? What can you see will improve mental health in the future?

Stress Kills.

2009-06-17T20:44:00.001-07:00

In the last few weeks, my husband and I have gone through more than a small amount of stress. We are house hunting, and as first time buyers, we're treading in a market that is full of homes due to foreclosures. Many people are working to try to save their credit by offering to go into a Short Sale, and this is also stressful to both the seller and the buyer. Then, mortgage companies, slammed with new applicants who want to get in on the $8000 new home owners tax credit, are pushing for people to take houses far sooner than they are ready, so as not to start the loan process again. Short Sales, foreclosures, loan processing, and then packing up belongings to move to some place else- it's all stressful, and it's all a great impact to our health.

You don't need to be struggling to keep a home, or struggling to buy a home to feel stress. Parents are pulled in thirty directions to be the carpool for sports practice, to assist teachers who are unable to afford supplies for classrooms, to handle the every-day issues of sibling rivalry, illnesses, and peer pressures. Single people struggle with the idea of finding partners, or finding jobs, roommate hell, and of course, parents who pressure them not to be single anymore. Seniors are struggling with the lack of health care, the lack of assistance and an ever-growing cost of living that is pushing higher than the amount of Social Security available to them. Everyone is feeling the struggle of an economy that has only started to see changes of a more positive future.

Stress changes us physically. We lose sleep. We change our eating habits. For some of us, our psychological welfare is harmed- we may get panic attacks, or feel depression. We may find our relationships are suffering. The people around us just don't understand what it is we struggle with and we may wonder this ourselves. And, our bodies will react to stress even before we realize we're going through it. Some will have irritable bowel syndrome, others will develop hair loss, still others may find that skin becomes an issue.

When we have an adrenaline boost, the "fight or flight" reaction, we have a variety of responses that aren't always conducive to either. Athletes who feel stress may find they perform better whereas some athletes discover that the moment they feel pressured, they have the opposite reaction- and fail in major ways. For instance, an ice skater who aces local trials in her region may fall several times during a simple routine simply because the stakes are higher. Someone who can speak to a classroom of 20 children may find themselves forgetting words, or even unable to speak to a room of 50 adults. Simply put, we aren't ourselves anymore.

Some physical changes relating to stress can be so damaging to our health that we may end up in the hospital. Our hearts may race, or we may have lost so much sleep or deprived ourselves of nutrition that we've become ill. For some, there is a dismissive response to the idea that stress is creating havoc in our bodies. These people suffer greatly, and could even find themselves at death's door sooner than not.

There's a reason why people offer food to bereaved family members during a funeral. There's a reason why people have dinners at weddings. Housewarmings involve food. Celebrations of birth involve food. People who don't eat during stressful times are shown the option of food during those times that are generally very stressful.

It's been proven that those who are given a big picture of things to expect before stressful situations are likelier to handle the stress far better. There is a reason why new employers, universities, schools, and even day care centers offer orientation classes. There is a reason why new parents are pushed to go to 'birthing' classes. There is a reason why doctors visit prior to surgery. Life isn't about having things easily laid out, but having a little bit of an idea of things that are likely to happen ease the surprise factor.

We aren't wired to be a 25 hour a day society, and yet, we live online which is a non-ending location of information and interaction. We work jobs that often have hours that are far longer than 9 to 5. (I can't even remember the last job I had that didn't require 8-6, with a nonpaid lunch.) Companies that lay off workers are expecting those left behind to work more hours. Children aren't just asking for a bike, a baseball, or Barbie, they're asking for high-end electronics. We don't just pay for phone, gas, and electric- we now pay for cell phones, television, internet, gas, electric, land lines, HOA's, and oh yeah, shipping. The parents are moving back in with their kids, the college grads are moving back in with parents, and kids seem happier with their Wii's and burger meals than with a dog and a day in the park. People we don't know want to "friend" us, "tweet" us, and sell us products. For some reason, we're all lacking in our acai and viagra supplies. The world wants so much from us, no wonder we're screaming at strangers in traffic, and making comfort foods the best sellers in grocery stores.

The one way to get rid of stress is to give our bodies something better to focus on. For some people, the day only works well if they've hit the gym first. This is an ideal way to decrease stress. You don't have to be into working out- DANCE! Listen to your favorite music and move around. The endorphins get released and the chemical changes we feel for depression also seem to lessen. Music is a great release- get out your favorite songs, and sing like no one is listening. (I'm partial to Rollins Band when I need to scream, Gap Band when I need to bounce, and Rubber Band Man when I need to dance.) Just singing to ourselves in a shower, or dancing around the house in our favorite sweats burns calories, reduces stress, and gives adrenaline no chance!

Feel no guilt about hobbies! Our culture seems to be divided over the idea of using our time for personal pursuits rather than taking care of others, or career pursuits. You can reduce a lot of stress by giving yourself permission to have a few games of solitaire. Let yourself play with those yarn needles. If you want to race slot cars, what's the problem? Do you like pets and want to give Rover some TLC? Go for it. Having recess from life is how we can cope better with stress. You had recess in school as a kid to burn off the energy that was stifled by classroom time. Think of stress as one big classroom time, and you got a reason for that recess.

Laughter is proving to be a great player in good health. More studies have shown laughter to reduce stress than even some depression medications. Go hit a comedy club, go watch an old movie, or even hit Youtube.com up and check out classics from Phyllis Diller or Laugh-In. You don't need money to laugh. Read a comic book, write a comic book! Find the absurd in your stressful situations and you'll laugh a lot more.

Private time is a great way to reduce stress, but it isn't for everyone. Some people use private time to let those worries just cycle through like a whirlpool in the mind. But, some people find that just taking a walk, or hitting a bubble bath, or even sitting with a book is a great way to tune out the world and just sit within oneself. Those who practice meditation are said to feel stress far less than those who don't. I don't know if that is true for everyone, but I do know that some people find great self strength in silence.

Face the stress - completely confront it! When I was battling IBS, I had tried to hide from other people, and tried to hide from myself. I let my body decide my social life, decide my reactions, and generally rule me. But, when I started to confront the things that caused the stress, the IBS started to appear less and less. If you know work is giving you stress- then figure out a way to accomplish your tasks without conflicts. Ask for help. Talk to those who are creating emotional upheaval. Ask questions. If family is too demanding, demand back- and let people know that you're in over your head. You may be surprised that just opening yourself up to communication will dissipate stressful situations.

Don't kill yourself over stress. If you find you've changed your eating habits, then set up specific times of day to eat. If you find you're not sleeping, talk to a doctor about either getting a prescription to help, or find melatonin, bubble bath, a scent, or something that calms you enough to at least nap. If you have heart racing responses, be sure you see a doctor and that you aren't ignoring an bigger issue. It's okay to feel out of control some days. It's okay to feel lost and confused some days. Let yourself feel allowed to talk to someone about it- anyone- just so you can relate to the human race. It may save your life.

This week's questions- What do you do to combat stress? How have you dealt with it in the past? Are you able to do something that's considered recess?

To Be Child-free

2009-05-26T21:05:00.001-07:00

Many women are preparing for their weddings this time of year. It's inevitable that along with the "Are you excited about your wedding?" the conversation will turn to "Are you planning on children?" Whilst some women gleefully cheer out the names of their future fantasy brood, others, like me and millions more change the conversation to something more pleasant. Some of us are not physically or mentally able to have children, and others are not likely to have children by choice, and that's today's topic.

I remember being a 20 year old, in the Navy, and wondering what might have become of any children I may have had, with a failed marriage at hand. All throughout my childhood it was drilled into my head that women grow up and have children of their own who cause as much grief as we gave our parents. In all my years as a child, I never really thought that I was the 'growing up to be a wife' type. I saw my parents marriage as a great example of what not to be like, and I saw my father's subsequent relationships as examples of how nothing lasts forever. It's a bit bleak to say so, now that I'm in a happy marriage, but in my strongest understanding- relationships weren't about having children, they were about trying to be human around another person.

I only truly considered what it would be like to be "mom" one time. I was in my twenties, and involved with another artist. As a pair, we were pretty fun, and as a family, we worked out- but medications took away that idea. We broke up when I moved to California, and he was happily a dad within a year with someone else. Meanwhile, I was tested for brain disorders and given chemicals that render people sterile. When I ended up on much stronger dosages while I was in grad school, I was told by a medical student, "I'm sure you are aware that you have almost no possible way of conceiving at this point." Actually, I hadn't. I had no idea. That's when I realized, I probably wasn't ever going to consider it again.

When I was 30, it was confirmed that I had an ovary missing, and another that was doing only part of its job. I started talking to other women who were childless, some by choice, and others, like me, who had medical issues. The common bond to us seems like a new society- almost a new culture. It isn't uncommon to find couples who are not parents as it was when we were growing up. It's not uncommon to find women who elect to adopt, or go through a surrogate. It's not uncommon to find happily married couples adopt a child later in life. And, its certainly not uncommon for women to become surrogates for others. Fertility clinics exist in nearly every major city across the country. And yet, we're still asked "When do you plan to have kids?"

Some friends have gone through the worst kind of hell known to man- the red tape it takes to adopt. One couple we know tried using the fertility clinics, attempted to harvest eggs, thought about surrogacy, but elected to adopt. With millions of children hoping for a home they had age and illness against them, so reached out to the foreign agencies. My cousins, also dealing with MS, ended up finding the only source of adoption available to them, in Korea. I now have a pair of twin cousins who looked like little china dolls when they arrived here, and friends who have the tiniest little daughter with the prettiest brown skin. Both families became complete with the adoptions, and they just worked best that way.

Another friend of mine lives in San Francisco, and has worked hard for the possibility of having her infertility reversed. She and her partner lived together for almost sixteen years before realizing that they wanted a baby of their own. After several failed attempts, she succeeded with an egg transfer from her own younger sister. Genetically, her daughter is similar but not 100% hers, but physically, she says, 'I feel like she is a part of me because she came from part of me.'

We all know single parents. My dad raised my sister and myself for several years on his own. One of my best friends not only has two children of her own, but is working towards getting her daycare license. She is only 27, and yet she is years ahead of me for maturity and mothering instincts. Knowing her makes me wiser in how much work, and love, and amazement comes from raising a child. Her children reflect her sense of values, kindness, and altruism. Another of my closest friends has two teens, both are home schooled, and her husband and she work diligently together to ensure that whatever may come, the children feel important, loved, and are growing to be good people. Parenting is the most difficult job, and when people do it well, it makes our world better.

Then, there are those who could take the options of adoption, or surrogacy, or even fertility treatments, but we just are not parents. We are not going to be parents. And, we may love the children in our lives, but we have no interest in sharing our lives with children of our own. Some people call us selfish. It strikes me more selfish to see children in the world who are orphans. It strikes me more of vanity to procreate based on the idea that "you gotta". If I ever felt the urge to mother, I see the need for taking in someone who needs love. I don't find that to be selfish. I also see that as I grow older, and my illness progresses I am not as able to do things for a child as someone able-bodied might be. That can't be selfish. And, as my parents age, I see that there may be a time in my life when I will need to focus my attention on being their care taker, and I think that's not very selfish either.

Women who are asked, "When do you want kids?" often feel uncomfortable answering. We should. It's a personal question, invading our deepest emotions. You'd never go up to a senior citizen and say, "when do you plan to die?" (Or maybe you would, I know who reads this blog!) These are the same people who ask a pregnant woman to "touch the belly". It's not a matter of intentional rudeness, in most cases, it's a matter of ignorance to the idea that this question is difficult to answer for many of us.

I tell people when I give grief counseling that you should always have three responses to any question you feel uncomfortable answering. The first should be a polite, evading response. "I will let you know if its in the plans." The second should be the "For family only" response, "I think we're more excited about.." insert your next family event here. And the last is always the smart-arsed one. "Are you volunteering for babysitting? Breastfeeding? Surrogacy?" etc.

In daily conversation, we can expect people to be more interested in talking about themselves than about us. It's easy to change the subject if we give the other person a way to just let us know their opinions, thoughts, emotions, responses. People like to be cared about and this is a great way to show you care- listen. Your best response will be as different from my best response to intruding questions. But there are ways to handle general questions from some members of our circles.

The best response is always to turn it around and deflect if you aren't really open to the discussion. If there is someone who has children asking, "When did you decide to have children?" is a good response. Turning the reply into a self-reflecting question is a way to learn another's thoughts on the idea, and can take the pain out of responding. Or, if there is a persistent family member who can't really take "I don't really want to talk about this now" as an answer, sometimes its best to let them believe they've got you convinced about their ideas, and then move on. "Oh children would be wonderful someday, and I'll know when the time is right." Then, in the case of the rude, intrusive friend or co-worker, sister, or aunt, "Really, I prefer not to talk about such personal things. How about them Red Sox?" Pointing out that you are clearly not willing to talk about your feelings, or illness, is certainly a correct response. And, I have found that simply stating, "I'm unable to have children because of medical reasons, but I enjoy your company, let's have that for now." This is a great way to stop any further questions.

There's nothing wrong with being honest to others who are intrusive. We all know this can be terribly uncomfortable, and as much as it is difficult to hear ourselves rehash the conversations we had with doctors, it may be more painful to have family and friends give up on us because we snapped. "I hate kids, back off Nana!" Being tactful means being able to honestly state your feelings without being condescending to another person's feelings or even issues you are unaware of. (Maybe Nana was one of ten children, and the only one who survived. Maybe Nana fears living her last days without any family around and hopes that your children will be there for her.) Understanding another by knowing intentions eases all communications. If intention is unclear, it makes it hard to respond in the best way possible. Learn the intention, and you can get past the question. "No matter if I have kids or not, Nana, I'll be here for you."

Today's questions- Do you find yourself explaining to others why you aren't a parent? Do you want to discuss being childless with others, and where do you go for this? If you could have a child, would you, or would you adopt? What is the best response for people who ask about your status as a parent?

Conflicting Reports And Commercials

2009-05-11T21:11:00.000-07:00

Today came an announcement of two dramatically different medical conditions and the results of studies which may change a patient's view of each. The article in Time Magazine, by John Cloud, points out the issues surrounding the clinical studies of Depression Medication. And, HealthDay News reported today that conflicts of interest between medical research and pharmaceutical company research is affecting the outcomes of cancer treatment studies- to the detriment of the patient.

What both articles point out is that our doctors, who read information via the same news services, are also getting confused by conflicting reports on clinical studies. Efficacy rates, which should be a priority in medication research, vary for reasons ranging from the patients available for studies, to the demographic in which the research is conducted, to the medications being tested against placebos rather than similarly formulated options. There isn't any one set of standards that are in place that protect the patient and give the researchers accurate information. Each study is done based on criteria set by those in charge of that study.

Company A- which manufactures "Kiwi Juice" can test its product for results against "scurvy". It can sit ten people in a room, have them drink a glass of juice once a day for a week, and put the same ten people in another room and give them access to nothing but bread and crackers for a month, compare the two results, and say, "Kiwi Juice did better at preventing Scurvy than other foods." They'd be telling the truth, but they aren't comparing against citric fruits, or other juices, or under the exact circumstances, and the results could be approved the the FDA.

Pharmaceutical Company B- which is seeking to cure teens of acne, can hire doctors who have promised to only use products from Pharmaceutical Company B. Then, they can ask these doctors how the product has helped their patients. The results will be "Seven out of Seven Doctors agree- Pharma-B is the best medicine for teen acne!" They'd be right. And, results could be verified and approved by the FDA.

When our doctors read the same studies, they assume, as we do, that there have been some sort of standards in place that clearly outline the correct patient for the correct medicine, treatment, or product. In fact, they'd be wrong. Most people who take part in clinical trials are volunteers, not selected for gender, genetics, or age. It is probably not surprising to you that many of the birth control options available to women were tested on male prisoners, some even well into their later years, and not on women of many nationalities, of childbearing ages. And, it's far less surprising that we don't get the full results of a medication or food product until well after it has been in the market and in our homes.

Our doctors are as easily confused as we are. Most are given long sales pitches about specific drugs or treatments that are so convincing that many become advocates for them. In recent news, the failure of a catheter for heart patients has become a big headline, but the information was available as long ago as 2005. There are also failures of heart treatments on women that seem to work well for men. The procedures have been in practice at numerous hospitals and cardiac specialist clinics- and yet, the studies that show proof of these theoretical failures have only come to light after many women died. The first studies published on this were as long ago as 2006, but no definitive tests were completed. Deaths of patients were the only true statistics that could be verified- well after these theories were tested.

A lot of the confusion in our doctors office is directly related to the same television commercials we see when we watch our favorite programs. More confusion comes from the placebo affect patients feel when given those same publicized drugs and treatments. Psychologists have long confirmed that hearing something enough will make it seem factual, even when there is a lack of supporting information. As patients, we're likelier to believe a celebrity endorsement of a treatment before we read the facts and statistics. When we hear our friends say "This worked wonders for me" enough times, we start to believe it will work wonders for us too.

You may note that the birth control option, Yaz, has changed their advertising to make it sound more truthful. It begins "We have been told by the FDA that we should clarify points regarding the prescription medication, .." Then a very pretty woman, with a very sincere face, explains the side effects and issues with the medication, including the words "fatalities". In fact, previous advertising listed the exact side effects, but in written form, so it wasn't as clearly stated to the television consumer. Our favorite magazines, Sunday paper inserts, and even posters on public transportation, advertise medication and treatments, showing required Side Effects, prescribing information, and the phrase, "Be sure to talk to your doctor about...".

As consumers who want to sound informed, we may just do as the ad requested, and say to our doctors, "you know, I'm reading about that pill X, and it says that it would be good for people like me who have Y." Your doctor probably has seen the same advertising, and even heard other patients request the same medication for the same reasons. Your doctor is under the belief that this medication is something that may help you because you have told her so. The doctor may have other patients who claim to feel different on that treatment. The placebo affect may prove true, or the medication formula may be the one you need, but do the research beyond the advertising first. Keep in mind that every thing we see on television is designed to make us watch, and repeat what you have learned. That's the power of group thought, of advertising, of things that SOUND true.

Tonight, I saw an advertisement for the product touted as a cosmetic industry "must"- Botox. This form of botulism has proved useful to patients who suffer from MS, and those who have nerve damage, joint issues, and even muscle atrophy. But, the ad featured a beautiful actress, Virginia Madsen, who also offered her story for People Magazine. Jamie Lee Curtis has become spokeswoman for Activia, a yogurt product which has probiotics as part of its formula. Probiotics are relatively new to the public consumer, but are used in Veterinary Medications, and by gastrointerologists, and have been for years. Botox isn't what improved Virginia Madsen's looks enough to aid her career. In fact, a contract with Botox helped her career, by giving her a new job in the public eye, and offering her an income for letting people know about her use of the toxin.

Both women, beautiful, older, and trustworthy in the public eye, are causing doctors to hear patients requests for "probiotics" and "injectible cosmetics". Neither woman is a medical professional, nor did either take part in long term studies for either treatment. Public trust has helped increase the number of patients coming to doctors. Advertising has convinced doctors to "try" these treatments.

We all are aware of the lawyer advertisements that warn us against the dangers of specific medications, such as Phen-Fen. The lawyer ads are not as prevalent, and instead, for each ad that claims a diet drug causes heart damage, there are dozens if not hundreds more, praising the results of the same drugs. This weekend, Hydroxycut was pulled from shelves by the FDA. As a product that has paid for more advertising that motor companies do for entire lines of cars, this may be the lawyers' next "phen-fen". Because it is an over-the-shelf product, consumers think of it as "safe". We don't often tell our physicians if we are taking a treatment like this, because we mistakenly assume we're safe by taking it. It is important to give your doctor a list of all medications, supplements, including vitamins, and over-the-counter products we consume to keep her informed, and to help protect our overall health. It is part of being a smart self-health advocate.

Today's questions- Have recent news stories changed your opinion of treatments you have had? Have commercials influenced your discussions with your doctors? Do you find that news stories and advertisements are in conflict? Have you read the unbiased studies regarding your treatments prior to accepting them from your physicians?

Do TV Shows Cure Illnesses?

2009-05-06T20:41:00.000-07:00

I have read several emails from people who are members of the Discovery Health Channel board on Mystery Diagnosis. Three women and one man have told me that they've discovered the cure for their illnesses are found directly on this website, and are excited about it. Two other women said they are still waiting, and I'm quoting both emails, "for SOMEONE to help". Each has posted a long letter regarding symptoms, letting the readers and board members know the frustration each has faced. One was very upset that the television show hasn't contacted her to help her find a solution. The simple response is- television can't cure us.

Tonight there's a show called "I Want to Save your Life". Dr. G. Medical Examiner has a show about ways not to die. My friend Stacy Kaiser has a show called Diet Tribe. Another friend, Ant, does Celebrity Fit Club. Dr. Oz has the "You, On.." series. There are dozens of shows about diseases and disorders on every day, on many networks, and in any language. But, although we can learn about our conditions, or perhaps find resources that will lead us to support, tests, or even medications, the bottom line is- we need to be the active participants in our own care, and we can't solve our problems with remote controls.

For those of us who have chronic conditions, it may be a great time to get in exercise- simply watching television and getting some- any - movement happening in our lives. Ten sit-ups, ten push-ups, arm curls with a can of peas- leg stretches- all can be done in less than ten minutes a day. If we can manage enough energy to sit and watch television, we can move, and that's always a great way to help improve our health. If we are in wheelchairs, or even partially mobile we can try to tighten and relax our muscles to complete some isometric exercise. It doesn't take much effort to keep our muscles alive.

But what if you find some clue to your illness from something you find on television? What if Dr. House mutters some random symptoms that you've been fighting with for years? What if you hear a woman and her children on a Discovery Health network program discuss the exact episodes you've faced for months? Can you find a solution for your illness from a television program? The answer is up to you, and in your ability to see past a television program for answers.

We've talked about finding a doctor who will listen to you as well as have you take your tests. We haven't talked about ways to approach your doctors with information that may assist in your diagnosis. Part of the problem is that television gives part of the answers, but not always the full solution. Some misdiagnoses go on for years because of misinformed doctors and patients. Right now the "hot diagnosis" is Vitamin D deficiency and partly due to Oprah, Hypothyroidism. The hot cure-all is Acai for weight and Sam-E for depression. Some doctors are dazzled by the advertising and representatives from Pharmaceutical Companies and gladly will hand you the latest and newest pills and potions. Others prefer to concentrate on your own individual responses to medications, tests, and even mental reactions to questions. They treat you like a person and not a product tester.

These are the doctors we want to have. We want to be able to say to our doctor, "you know there was a program on television that listed symptom x, y, z, just as I have. The show discussed the idea that the patient had Disease A." Then, if your doctor listens you will have a discussion about that particular disorder, why he thinks you could or couldn't have it, and what should be the next step in ruling it out. The smartest approach is to do your homework and write out your questions that lead to specific answers. Let's use the example of "Lupus", as it seems to be ruled out dozens of times on the show, House MD.

First, search for sites with Lupus support groups. Learn from the members the different tests that were take to discover the illness. Lupus isn't always easy to test for, and some people have symptoms for years before ever having the butterfly shaped skin color change, or the multiple joint failures. Find out what tests seem to provide the clearest answers to doctors and to patients alike. Then write down the names of these tests, how many times the tests should be performed, and of course, if you can, how the test is performed so you can have a discussion about it.

Secondly, make a note of all the of the symptoms you have the correlate to this illness, but also note the symptoms that may not be related. All symptoms you have may relate to other disorders, and could be mistaken for Lupus. Some people who have MS, for instance, are misdiagnosed with Lupus or having Fibromyalgia just for not being clear on all symptoms. The more symptoms YOU are clear about, the better your doctor will be able to assist you and diagnose you right the first time. Even if you think it's not important, it may be just the right symptom that is the key for your doctor. Include body temperature changes, weight fluctuations, and if you have changes in hunger. All of this could be important. It is better to have more details than none.

Make a list of questions that start with the words "What if..", such as "what if the tests show nothing the first time, will there be a second test?", or "what if the test is positive, will you treat immediately, or will you offer a second test to confirm?" The doctor should be able to help you as best he can, given the information he has at the time. But, be prepared to leave a list of questions with your doctor to give him time to research your condition, and give you proper responses. You may not get all the answers you want, especially in the land of 15 minute or less appointments.

Just because the person on the television has your symptoms doesn't mean you have the same disease. Be prepared for the idea that your doctor may counter your suggestion with reasons as to why this tv diagnosis isn't right for you. Some disorders have similar symptoms, and more to the point, your illness may not be as simple as something cured on television in 60 minutes or less. I knew for years that I had Ehlers-Danlos but I never knew it would put me in a wheelchair. My doctors weren't discussing this with me because I never said to them, "Yes, I have this, and I want to know what happens with me in the future." It was just acknowledged, and all of my illnesses that related to it were disregarded or thought of as something different. This is the issue with not clearly understanding a condition. With years of misdiagnoses came the resulting Hashimoto's complications.

Today's Questions- Would you bring a check list of symptoms to discuss with your doctor at your next appointment? What have you found on television that was close if not exactly your condition- so much so you've sought medical assistance? Have you found support through the forums from television programs on health?

Reading Doctor Review Sites

2009-04-28T07:18:00.000-07:00

Today, I head to a Rheumotalogist. This is a doctor who, according to dictionary.com, "mainly deal with clinical problems involving joints, soft tissues and allied conditions of connective tissues". In the least decade or so, they've also been tapped into for their skills in autoimmunology. In Las Vegas, a doctor who is skilled is a rarity, and a doctor who has compassion is nearly unheard of-and today, I ran across a professional who is both.

Dr. Timothy Kelly has practiced for 21 years, studying here in Nevada, and keeping his practice in the land of silicon breasts and dancers knees. I read about Dr. Kelly after being referred to him. I had typed his name into Google and Yahoo, and found listings of about a dozen "Doctor Rating Services".

The internet has spawned a plethora of sites that cater to what "sucks" and what "fails", but it's rare to find any site that promotes the positive aspects of anyone or anything. It seems the medical community has been the breeding ground for sites that are venomous at best. In fact, I was told my own blog- which is completely based on personal experiences- can be viewed as a direct slam of the medical community at large. In fact, it's a warning notice for those who want to avoid the painful results of badly managed health care. And today, it's a grateful acknowledgment that there are doctors who believe in the ethic of "First, do NO harm." But, I wanted to point out a few of the "review" sites, for your own bookmarks.

I found one complaint on Dr. Kelly. One. It was listed on several sites, however, and that is one of the issues I have with any sites that claim to offer reports. A single source becomes the only source of information for most. There is a sharing of information based on Search Engine discovery. Or, there is a single person who signs on to multiple sites, copying and pasting the same complaint. When you search a doctor's name- you will then find dozens of complaints listed, while reading further apprises you to the fact that there is a sole complaint. It's how I read the same report a few dozen times on St. Rose Hospital last week regarding their billing department failure for one patient. Search engines listed three complaints against Dr. Kelly, and it turned out to be the same one complaint from a Fibromyalgia patient who didn't get the response she needed from him.

When I walked into Dr. Kelly's office, I met his staff, who were fun, lively, and didn't make me feel inferior in any way. The office is the first one in the medical center, meaning those of us who use walking assistance don't have to struggle far. Dr. Kelly walked in to meet me just a short time after I filled out paperwork, and he was probably the most attentive doctor I have met in at least 20 years. He read my history, and he looked through my medications. He talked to me with empathy, and true understanding of my condition. He made me feel human. It was a breakthrough for the treatment I've received over the last few years which has been hurried at best. He knew my condition well, understood what I was supposed to be concerned with at this stage, and got that my disability was often a struggle for me. I really LIKED this doctor. I left there feeling a renewed hope that my primary care doctor would get a comprehensive understanding of my condition from this specialist. Now comes my duty as a patient advocate- I have to let all the Doctor Rating Sites know of the positive aspect of his practice, to counter the one comment of negative I found- and I found to be not remotely close to my experience.

What sites offer Doctor ratings via patient input? Which ones are reliable, or which are mostly great at finding information regarding licensing censures or other decisions passed down through AMA? First, start with your state medical board. The California Medical Board site has a great example of how you can view the history of your doctor. You simply do a search of the name, and you can see if any cases or complaints were filed. Most state websites have this available in the United States. Overseas, you may need to view the agency that gave your doctor credentials. In these instances, you view factual information and you don't get the full story- as it generally is protected by law.

But there are sites that are available for your input. One of these is RateMDs.com, and the failure of this sort of site is the basic issue of not having a well-rounded review of a doctor from a polled pool of patients. You get gut responses from people who have strong opinions. Other sites offer doctor information- as paid for by the physician, but don't carry listings of ratings. The doctor pays to be listed on a review site, and hopes that the patients will sing praises to the world.

Companies like HarrisPollOnline.com monitor patient responses regarding general health care, specific medical organizations, or even specific practices. Kaiser Health and other organizations use polling companies to help determine the areas that need to be improved upon, and others that have done well. If you want to make a change in the health system, you would do well to respond to surveys that are directly impacting the organization which carry your doctors.

But, if you want a general overall feel of what your upcoming appointment will be like in a practice- sites such as CitySearch or even Local.Yahoo, because the comments placed on these portals are similar to those you'd find for ANYONE you'd employ. You'll find a doctor rating in your local strip mall next to the rating for the pizza parlor in the same strip mall. The information is less personal, but offers customer service responses rather than detailed medical procedural information.

In the last six months, several well established medical journals have complained harshly against sites such as RateMD.com or HealthGrades.com. Most validly point out that the doctor doesn't have any chance to offer his side of a rant. But, those of us who are willing to read past a complaint will get information we need. If, for instance, one person appears to rail against a practice, yet doesn't offer specifics, it will generally come across as bad apples, and not as factual information. If specifics are clear, and seem to echo others' opinions, then a patient is better armed against what may be an unpleasant appointment. A wise patient will also note if the same person seems to rant against ALL doctors he or she comes across. It's true that most health care agencies are struggling against negative comments, but it's also true that one person doesn't speak for hundreds who may have another experience.

Those of us who do want to change the way patients are treated for specific illnesses, specific issues, and even by specific agencies, do so by actively contacting and educating our medical professionals. We spend time educating others regarding our own conditions. We may have occasion to point out failures publicly, as a warning to both patient AND medical facility... we want our Patient's Rights to be adhered to, and we want doctors to First Do No Harm. Last week, I had an experience that was a result of mishandled care by nurses and doctors in an emergency room. This week, I had the experience of having a caring, compassionate doctor who was willing to listen. Unfortunately, the complaints will make more people pay attention than the praises. That is the stripes of the tiger known as Internet.

Today's Questions- What sites do you find useful in learning about medical professionals? Have you decided to not use, or to use, a specific practice based on comments left online? What positive things have you learned by researching your doctors? Negative?

An Open Letter to Emergency Room Staff

2009-04-20T09:48:00.000-07:00

Last night I had the misfortune of having to be in an emergency room. I only went after not being able to breathe and losing hearing in my right ear. I left sicker than when I got there, and I am furious at the quality of care imparted. This was a good hospital- and previous visits for the husband's illness were absolutely easy. Mine, as a disabled female patient, was an entirely different matter.

I heard other patients admitted. A senior who had gotten so drunk he wasn't able to stand up. A woman who had diverticulitis, but whose white husband was doing all the talking. Two other women had sutures, and were in and out before I was even seen. Here is my open letter to the St. Rose Hospital in Las Vegas. (Names abridged until hospital responds.)

Dear Public "relations",

Dr. F. is going to kill someone. Last night, I thought it was going to be me. I have been in an emergency room 3 times in the last 20 years. Three. I don't go because I need attention I go because I need help NOW. I have two chronic conditions- Ehlers-Danlos, a connective tissue disorder, and Hashimoto's Thyroiditis- an autoimmune disorder. ANY doctor with ANY cardiac experience NEEDS to know this because if I get infections, it attacks my heart. I tell this emergency room "pretty boy" that I have Ehlers- Danlos and his response is "So what is that? Why do I care?" I try to tell him and he's already 20 feet away, back to me. And it happened again, later in the evening.

I came in from the airport, with a nasty infection in my ears - spinning room and all. It's relevant. I had been exposed to children with illness, it's relevant. But, with an intake nurse watching my husband's tattoos, and asking more questions about that- all I got to hear about was "Sinus infection" in the Vegas Valley. I hadn't come in from the Vegas Valley, I'd come in from Los Angeles.

Still, that's an infection. I saw a doctor two HOURS after getting there. (Six months before, my husband was seen for a fistula in less than 10 minutes.) I couldn't breathe, and was given a nebulizer treatment. This caused mucous to pour from my sinuses- and I was gagging on yellow chunks- Dr. reaction was "Swish with peroxide".

I continue gagging and vomiting air for 2 hours, and I hear Nurse 1 and Nurse 2 talking about their music, food, hip replacements, and oh yeah, I wasn't given antibiotics, pain meds, or even a second glance by the doctor after the "swish". My throat at this point is starting to bleed from the vomiting. NO one cares. THEN, I walk up to the nurses station, IN FRONT OF MY BAY, and ask for the pain meds again. It's now 9:34, and the intake nurse said I'd get them within the hour I arrived.

Right. Okay. I get back to the bed, and my left patella is now slid. Ehlers- Danlos. Nurse 1 walks up and tells me to get this pregnancy test. I'm told "Hospital policy". I've been to the bathroom three times, and could have taken one ANY of those times. I get told they need x-rays? For my throat? I'm gagging on mucous, not a nodule from Hashimoto's. I tell Nurse 1 my patella is out of joint, and I can't walk. I get handed a bed pan. I am now sitting on wet sheets- never once got asked if I wanted a blanket, or even tissues to wipe up the spit vomit- I brought my own. I see Nurse 2 (hip replaced at Sienna) mimicking me. No pain meds STILL. Patella out of joint, still vomiting.

The radiologist collects me..tells me I have to sit up- sitting up make me gag on mucous. She asks what I'm there for, and I tell her I came off of a plane with a swollen ear, and this has escalated since I got there- I have no idea why they are giving me expensive X-rays. NO blood tests. No CBC. Had my temp taken ONE time- when I checked in, on a body that has no working thermostat. No blood tests. At all. Infection could be in heart at this point- all I know is I'm getting sicker.

At 9:50, Nurse 1 comes into my room and says "You're all set to check out." NO antibiotics? No pain meds? And, prescriptions for pills I can't swallow. At that point, I told him I wanted another doctor NOW. Dr. pretty-boy walks back in, takes a look at my throat- I cough and he couldn't spin his head away fast enough. He listens to my lungs and says, does the same spin when I cough, I apologize to him (?)! "Your lungs weren't even congested."

So why give me nebulizers? Why let me choke on mucous for hours? I told him point blank- he didn't give me the antibiotics, or pain meds, and I was sitting there sicker than I was when I arrived. Again, mid sentence, he cut me off and left.. Nurse 1 suddenly is a nice guy after I say, "It's obvious you guys don't care." I knew more about his roommate and music than I did about when I was going to be helped. The doctor NEVER saw me again, NEVER told me anything. NEVER explained what to do afterward, and by the way, I'm on morphine for EDS. So he actually prescribed Lortab- which has conflicted pharmacology with Morphine and should NEVER be given in tandem. He prescribed Proventil- which is for lungs, and I have a prescription for already. He prescribed Leviquin. In pill form. I can't swallow. He listened to NOTHING I said, and got progressively less helpful.

He WILL kill someone and should NOT be in Emergency medicine. IT took ME BEGGING to get an IV. Nurse 1 stuck me four times before finally listening that a collagen disorder causes rolling veins and finally found a working one. I told him I had a picc-line before for that very reason. At least when he started to listen he realized I wasn't there to interrupt HIS evening. Meanwhile, my husband arrived at 11pm. It's a new tune. Oh, yeah, by the way, he's in a big show in town, is recognized, and people there were suddenly nice to me when he showed up. Before that, I was the disabled person with "issues", per Nurse 2.

The doctor never spoke to him. He never came back. We left, Nurse 1 was nice enough to wheel me to the car. Today, blood tests done, and my white cells were through the roof. I had to correct the antibiotics so that my heart was also taken into account, and I was tested for Mumps, which was borderline. Had the doctor done that in the FIRST place, I wouldn't have had to "Interrupt" his night. Do these guys honestly think being in the open and hidden by a curtain makes them un-hearable by people in bays? My husband and I now know that St. Rose emergency is preferential to celebrity types, and we'd be seen faster if I had driven back to LA to go to Cedar's.

All I needed was a blood test and to be given the right antibiotics- that didn't cause me to vomit for hours at a time, and to be HEARD. If this doctor is left in Emergency, you will find dead patients. He just doesn't care. At all. He can't even handle that people cough when they breathe mucous. He never understood why the Ehlers-Danlos was important and KEY. And, Nurse 1 telling me I could crush antibiotics into applesauce wasn't the answer.

We used to believe this was the only competent facility. Now we know better.

Relapsing

2009-04-06T21:37:00.000-07:00

Chronic illness has an unfortunate path- there are often relapses caused by being on incorrect dosages of medication, the wrong medications, or even at the edge of healing. You may feel as though you are taking the cliched two steps forward and three steps back. For a sweet moment there was a glimpse of what it would be like to feel "normal" and then- everything that you were fighting and sometimes even more comes back with a vengeance.

With genetic disorders and syndromes it's hard to gauge when a flare up will return. First you are battling your body's own make up. It only knows the genetics and chemicals, hormones and functions that it has- and nothing more. When a new chemical or hormone is introduced, sometimes the body will approve of the change- and get well. But, there are many times that the body decides your options aren't the correct ones. And that's when you are stuck dealing with that reaction.

Over the last few months, my body has determined that it will fight my attempts at finding "healthy" by thwarted the purpose of the medications I've taken. First it started with the sleeping medications - and I spent nights upon nights wide eyed, watching sunrises, and hoping that a nap would suffice. Next came the uprising against my pain medications, and I have been battling a variety of new options in attempt to at least get down to a "7" on that smiley faced scale. Finally, the hormones that have devoured my thyroid gland, and brought me from a size 3/4 to a size 12, are working to defeat the synthetic replacments that are startign to show signs of working.

The last ten days have been a greater struggle than the last ten years. The wheelchair is starting to get closer to the door, and I'm struggling with the idea that I'm losing my ability to maintain much physicality. The left hand swells up, then the bruises appear, and next thing that I know- I'm back on the couch hoping the clock will just shush for five minutes as I attempt to not migraine. I find that standing is painful, and when I drive, my back ends up with welts and large bruises because the bones shift and bang into each other. Sitting upright is just impossible.

Of course, I can't imagine telling my husband this over and over. He's the emperor of patience and begs me to tell him what's wrong, as a good man should. But I hate hearing it as much as I hate saying it. I hate admitting that I'm failing at getting better. I hate admitting that no matter how many new medications, new treatments, new options, or new doctors I try- the genetics have a one-track mind.

There are days when I get why people commit suicide over illness. I've lost friends and family members to that disease- and can't see it as an option for myself. But there are days when I wonder why I wake up if I know there isn't anything but pain. Tonight, there was an episode of House, MD, where a key character commits suicide- without explanation. Suicide doesn't offer any explanations, and it never will- the choice of death over pain is an option for some people. I'm not one of them.

Is there ever an escape from chronic pain, chronic illness, and chronic doctor visits? We can create inner escapes which help for at least moments. For me, spending time with my pets seems to erase moments of pain. A friend of mine has a daughter with whom she can finger paint and read stories- and then her illness is gone for those moments. It's those moments- the ones that make us feel human- that help the relapses, help the lingering illnesses. We aren't cured, but we're in a moment that isn't marred by pain and being sick.

Today's questions- What can we do to get through relapses? What have you found to help when you're in between doctors' visits and can't quite get through your illness? Have you bounced back from an illness long term, only to be surprised by its return?

Emergency Rooms- The Only Choice?

2009-03-30T20:43:00.000-07:00

You find yourself debating the idea of purchasing groceries for your family, or seeing a doctor for a recurring cough that seems to be emitting parts of your lower lung. You'd borrow money from someone in your family, but everyone is on edge about losing their jobs, and you are not sure yours is going to be around much longer either. We're cutting coupons, waiting extra days between laundry so we can use less electricity because the cost of running our lights has gone up so much. Every where we turn we're being told how much worse it's going to get. Yet, we're coughing, and can't figure out what we should do about seeing a doctor.

Not too many years ago, former President Bush stated that those who were unable to afford health insurance or medical care from a primary physician should just go to the emergency rooms and then the hospitals could sort out the mess. In February of 2005, Reuters posted stories that more than 50% of the bankruptcies in the United States were filed due to medical expenses. In 2006, it was reported in several news sources that medical billing errors, and down right scams helped create an unmanageable number of cost overages. Certainly double and triple billing of patients has become common practice as medical billing services hand off account files to debt collection agencies even AS patients are in good standing with payments. We're being billed out of good health care.

Visiting an emergency room should be considered in the same way someone would consider dialing 9-1-1. If you can get to a doctor who has a regular rapport with you, knows your history, and can tell the difference between your "normal ranges" and the ranges another patient may have as normal then do so. An emergency room isn't the best answer. So many patients are using this system as the only form of health care- causing those who have true emergencies undue pain, long waits before seeing a professional, and in some cases, death.

If you have to hit the emergency room because it's after hours, or your doctor can't see you for several days, or you are no where near home and are very sick- then you can do something NOW to plan for THEN. Put a copy of your medical records on CD or on a Jump Drive. Add any tests, copy your food diaries, mark down any doctors' contact information you've got. And, if you have a living will, advance directives, or even a designated patient advocate- put that on the drive, too. Keep this with you on your key chain or on a necklace- and you WILL have better care in emergency situations. If you use a service such as GoogleHealth or MedAlert, copy those files too. ANYTHING that gives your emergency room doctor more information regarding your health is FAR better than just hoping he or she will understand from the symptoms at hand.

Jump drives are available for under $5 for enough space that can hold dozens of xray screenshots, medical files, legal files, and you can load them up via Mac, Windows, or even Linux. Save your files as TEXT or as RTF, (rich text format), or even better print them as PDF. You can get free PDF programs such as BullZipPDF from SourceForge.net. If you update your files EVERY time you come back from a doctors office, you can ensure that your current medications are listed.

Include NON-prescription medications, supplements and even if you're on a diet such as Nutrisystem. All of this affects your care in an emergency. And, ensure that the contact information for your next of kin, friends, and even someone from work is listed in case you need to have people come to the hospital and speak on your behalf. I have marked a jump drive with MEDICAL ALERT, in a permanent marker. The drive has a loop which I've attached to the Keychain Loop of my wallet. When someone checks for my ID or Insurance, the drive is available, as well. I do NOT include my social security, mother's maiden name, or specific information that would cause identity theft or worse. But, my health information is stored- and that could save my life.

The Emergency Room system isn't reliable. A person who comes in on an ambulance with a sprained ankle may end up seeing a doctor before the woman who came into the waiting room complaining of chest pains. A man bleeding may be seen before a child with a high fever. You can never tell from one day to the next nor one hospital to the next what the priorities of being seen will be. Then, once you see a doctor you may end up with a new resident, or you may end up with the head of surgery. The wait may be just a few minutes, or a few hours. One doctor may think you need to be admitted, another thinks you just need antibiotics. Having files with you can help you.

There are other options. In the last ten years, "Urgent Care" centers have become part of our neighborhoods. You can see doctors there after hours, and get to see the same doctors, so they are familiar with your history. Local pharmacies are offering "Quick Clinics" so you can see a dcotr if you are coming down with a flu or cold, but can't see your regular doctor for several days. Medical Schools open up outreach clinics, and there are even clinics that drive to you. Some of these services cost far less than standard emergency room fees, and still others are free.

If you have a community center, local hospital, school district, or even a public housing office near by, look in your weekly calendar section of your paper, Craigslist, or even the newsletters. There are free health services offered for neighbors, seniors, the disabled, caretakers, single parents, children. Dental schools offer discounts. The United Way lists free counseling centers, discount health care centers, and even local health spas and gyms have screening days. If you are sick, can't afford a regular doctor, but need care- check your local calendar for FREE or reduced cost options. I worked at a company about 20 years ago that even gave us free Diabetes, weight management, and heart exams because it wanted to retain a healthier, happier employee. Those days may be long gone, or you may be missing out on an employee benefit you may not even be aware exists.

Today's questions- When cutting costs, do you use Online health services or do you prefer to see an emergency room doctor? Is someone in your family aware of where you keep health information, or legal papers, in case you are unable to answer doctors questions? Where do you go to when you need to see a doctor after hours, or when you can't get an appointment?

Developing Tolerences for Medications

2009-03-23T12:53:00.000-07:00

Over the last seven years I have been taking Morphine S04, also known as MS-Contin. It is given to alleviate pain, and is on a time release. From the start, when I was on 30 mg twice a day until today, when I'm on 80mg twice a day, I've developed a tolerance for the drug- so much so that although I do see differences when I am delayed in taking the pills, I also find that I'm in far greater pain now than I have been in years. Every few years I get x-rays that determine the extent of the joint damage Ehlers-Danlos has taken, and in that time, I also get re-evaluated for pain medications.

It is true that the difference before the pharmaceutical and now is the ability to walk or not. I have a motorized wheelchair at the ready, and as I type this blog my left shoulder is working its way back into the socket. For those of us dependent upon pain medication, the ability to perform simple tasks is often an indication of how well the pain is managed. No one has ever said to me, "Oh you're high!", or "You seem a bit out of it", because the pain medication does its job. It isn't designed to be a recreational activity for me- or millions of others.

But, our bodies develop tolerances to long term medications. Women who take birth control to help with break-through bleeding find that after a few months, or years, the symptoms return. Someone who was able to wake up after a cup of coffee may find it takes up to three to feel that same way later in life. And, those who are on opioid medications also find that after time, the body develops an ability to reconnect with the pain. There is often an additional prescription or recommended drug given for the pain that occurs between doses, and many times, this increases side effects, and may prove to be less than useful in assisting against the searing, throbbing, or piercing sensations.

Some doctors will attempt to offer several options to handle the pain-between-dosages. In my case, it was first a simple Naproxen. This over-the-counter solution does wonders for my headaches, and if I have a cup of tea- I'm set to go for the next few hours. But that soon lost its effectiveness. I was put on Hydrocodone, also called Lortab or Vicadin. The side effects made it fairly difficult to appreciate the pain-killing properties. Then I was given Oxycodone. Now most pharmacists will say, "Morphine and Oxy don't mix", but pain specialists seem to believe that is an error, and if taken as directed, and blood is monitored, the patient should be okay.

This combination worked for me for about two years, until a few months back when I was finding that it was far more difficult for me to move each day. Now that I'm in my mid-forties, I'm finding that age plus dislocations is a difficult combination. The xrays showed that I've got several sockets that are shrinking, and that isn't allowing me to recover from the bone and joint issues as quickly. My doctor and I discussed other options, and I'm scheduled to see a rheumatologist, but in the meantime, I'm now on an Immediate Release version of the Morphine, which I take every few hours between the long-term dosages. Because I've grown a strong tolerance for the drug, the idea that a similar formula should work well seemed logical.

But that does not take into account the renewal of side effects. In the first few days, I noticed a remarkable change in pain relief, but I also noticed that some of the issues that appeared included nausea, loss of appetite, and an almost PMS-like feeling just before the next dosage is due. In a few days, I should develop enough tolerance of this new form that this reaction will abade, but in the meantime, it's the miserable feeling between then and now. My doctor is working to find the correct long term dosage so I don't have to take any more break-through pain medication again. This will be a welcomed relief, eventually.

Today's questions- What do you find has been your greatest relief in building up tolerances to medications? How do you handle the initial side effects? What medications would you rid yourself of if you could?

What is Talk and Die Syndrome?

2009-03-19T10:09:00.000-07:00

It wil be on the cover of dozens of magazines over the next few weeks, with the loss of the beautiful, talented Natasha Richardson. Yet, it wasn't talked about as much when Sam Kinison died over a decade ago. He seemed to be handling a head-on collision fairly well, was talking to his brother, then the talk became confused, and then he died. Mrs. Neeson even told the ski instructor jokes about her mistake and fall, and apparently shoo'd away the idea of seeing a hotel doctor until she started to feel head pain. By then, the swelling in her brain had done more damage than could be repaired.

Our brains have no nerve endings to feel pain. When we get headaches, it's not the brain that is aching, it's the tissues around it, the muscles, the sinus cavities, and even the skullcap. The skull is constructed to provide a protective layer of bone around our brains, and there is also small space between the brain and the skull allowing for minor swellings in case of injury. But, when the swelling is too much, the tissue around the skull responds with pain. Some people have brain trauma that is so severe they don't realize it until something catastrophic happens. Brain injuries are often diagnosed well past the time when people can have full recovery.

In the last few years the show Mystery Diagnosis on Discovery Health, has featured several illnesses that people have survived that could have had dire consequences. One woman had brain fluids leaking from part of her skull. She tasted strange metallic flavors, but no doctor could find the issues she was having. Her head hurt especially when she was subject to pressure changes, like in airplanes or hiking. Any one of these flights could have killed her. It was her persistence to seek help that finally got her an answer, and required her undergoing multiple surgeries to patch this leak.

In another tale, a man had water in his ear, and would experience dizziness. After several years of issues, he found out that part of his brain had swelled so much it was leaking into other parts of his head. A young girl had an accident during her teen years, and only a decade or more later was given the news that her illness was due to a pituitary injury. Yet, sudden trauma can confuse us because our brains feel no pain. And, we are unable to tell people that we are experiencing brain injuries if we have no symptoms. People may notice us slurring our speech, or even responding slowly, yet we assume we are fine. In fact, we may be experiencing stroke.

There is a reason why ambulances are called to any car accident. If a person has hit her head on an airbag, a steering wheel, or even the back of her car seat, she may have some trauma that will not show up for days. EMT's are trained to ask specific questions, and to look into a victim's pupils to see the responses. If there is the slightest chance there is brain trauma, the victim will be taken to a hospital and given a CATscan, MRI, or even a test that measures epilepsy or sleep responses. They're not trying to bilk you, they're trying to ensure no injuries are hidden. Many people lose their lives weeks, months, or even years after an accident simply because they refused to go to a hospital.

There were no less than 20 emails to me in the hours that Natasha Richardson went into the hospital. No one was asking about gossip and silliness- they wanted to know how common it is to die from an accident as minor as a ski slope fall. I don't have numbers and stats on that, and I am sure the magazines and news wire services are going to do a substantial amount of reporting. I do know the under-reported incidents are very high since hospitals are no longer required to do autopsies after deaths. I also know that in the last thirty years, more men have died from brain related injuries simply because they do not go to the doctors as often as women do.

Talk and Die Syndrome is a common issue with brain trauma. The victim may have bumped his head on a shelf, or had something fall on him at work. For the next few hours he will appear to be fairly normal, but when he gets home from work, his wife will notice that he seems to be daydreaming, or that he seems to mispronounce words. Some people will have emotional changes, and seem to have mood swings. Then they start to feel, in some instances, but not all, that they have a headache, or are nauseous. They'll lie down- or take a pain med, which hides symptoms further. Aspirin, the blood thinner and pain reducer may end up making it worse. Because it thins the blood, more flows into the skull cavity. The swelling and blood have nowhere to go, and the pain intensifies. This is usually when a doctor or ambulance is called, and by this time, unless drastic measures are taken to relieve brain pressure, it may be too late.

Being a self-advocate is REQUIRED of anyone experiencing any form of injury. If you feel you are probably over-reacting when it comes to a head injury, there is no such thing. You could be saving your life. You could be saving yourself from years of disability. If you fall and feel the impact from your spine to your head, you should see a doctor before dismissing the possibility that you have harmed yourself. The doctor is happy to say "Oh, you're probably fine" and send you on your way. It's up to us to insist we get care for injuries. It's better to have a medical file that has a clear test, than a mortuary file that lists a preventable cause of death.

Was Ms. Richardson's death preventable? Possibly, but it's not clear how fast the injury happened to her, how much injury she may have suffered in the past, or if her trauma was the result of this one incident or of years of incidents. For some people,it can be a matter of minutes from the impact to their demise, and for others, it may take several incidents over several years. Talk and Die Syndrome can kill someone within moments, even if the patient seems fine and normal for hours. The damage that is fatal is done and nothing can change it.

So, today's questions- What can you do to protect yourself from head trauma? Were you in any accidents and refused medical care? How important is it for a doctor to take tests even if the signs are pointing to "normal" after an injury?

Why Xrays?

2009-03-09T21:35:00.000-07:00

At 8 A.M., I walk into the Women's Clinic at the Veteran's Clinic, expecting nothing in particular. This weekend was wrought with painful moments, with the shoulders each taking turns over which would pop out the farthest. Then, migraines hit with fervor, so I was fairly incapacitated for the entire 72 hours. This morning, I expected nothing. For years I had strolled into these buildings, hoped for some assistance, and was taken through the systematic methodology of "First let's try this.." as is the rules of the Veteran's health system. But today, I expected nothing, and got a doctor who listens.

Several weeks back, another doctor, my former "regular" one, ordered X-rays which were mandated prior to any pain medication changes. The FDA is scrutinizing a manufacturer that provided Oxycodone to the hospitals, and clinics, and therefore, my pain medications were reduced. At the same time, she orders Xrays to provide me with a cause to visit the VA's pain specialist. Reduction of pain meds, xrays, then pain specialist. Seems like an illogical step to me. Also, I was given the name of a local rheumatologist who is well-versed in Ehlers-Danlos, and figured he would probably appreciate these scans, so I willingly went along with the idea.

The Xray center is just downstairs from the Women's Clinic. When I walked into the office today, my new "regular" doctor, Dr. Valerie Schram, sat at her desk, looking at my reports. But, not just the reports from the radiologist, but the weight fluctuation, the medications, the history of visits, and oh, yeah, the blood levels that confirmed Hashimoto's Disease. This is the same doctor who, after seeing me gain and lose upwards of 40lbs in a single month suggested I may have a thyroid disorder SIX years ago... but was dismissed by the then, Regular doctor. She was trying to help me years ago. And, after my last visit with the Regular Doctor, I gave a sigh, walked into the business office, and asked to be switched to the one person in the system who seemed to understand at least part of what I was going through.

The former doctor sat with me for less than 10 minutes each visit, making empathetic commentaries, and yet, never quite did anything more than offer me more pills. This doctor looked at the prescriptions, and said, "oh, I see you're not taking antidepressants anymore?" showing me that she was truly reading the file rather than thinking about the previous patients' diabetes, and future patient's flu shots. Dr. Schram paid attention to me, as a person. And, after we talked about the issues with medications, and the reason why I elected her over the previous "regular" doctor, I asked about the xrays.

The first thing she said was, "We need to control your pain, and I think the best way we can do that is after the appointment with the rheumatologist." But she didn't just leave it at that, she said, "Until then, we need to find out what the correct dosage of your medications is NOW." Then she went through and handed me a new pain medication prescription that wasn't a "break through pain" one, or a "just in case" one. It's a testing prescription that allows me to increase or decrease my current morphine levels, so she knows what the correct dosages for me are, without guessing. After that, she read through the xray results. Not just skimming, she read through the notes, and locations of the issue. We are now aware, together, that my hips, hands, and wrists, and yes, even shoulders, have progressively been getting worse, by about 7-13% since the last set last spring.

There aren't any breaks, and there are no noticeable cracks in the joint sockets, which is great news. But there are spurs, and swellings, and other weird stuff that we get with a disease that makes you a private circus. On Friday, I pick up the CD of the images so that the new rheumy can check them out. But this doctor listened, and paid attention to the long term issues, and seems to get it. The xrays were something she had to have just to put me into the pain management program, anyway, but the idea that she's actively inolved in trying to make the pain bearable is a welcomed change.

The Ehlers-Danlos does cause remarkable changes in skeletal structures. In the exam room, I was twisting my elbow almost 80 degrees out of place when they took the first shots of it. On the report the phrase, "no obvious dislocation" made me laugh. I guess it's a normal thing to have someone's hand upright and elbow facing backwards when getting pictures done. But, the rheumy should know what the images really show. I've been given body scans, and MRI's, Cat and Pet scans. Kind of like an Animal Planet show, without the tails, although I suppose I do have tales, afterall. In the joint mobility spectrum, not having the pictures would make it harder for most doctors to see the issues faced by those of us with sublux and dislocation issues. But, since the tendons, muscle, and joint tissue hardly shows on these, it's likely I'm going to have more scans. I'll be sharing those with you, too.

Today's questions- How did you know you found the RIGHT doctor? What tests do you find reassuring to your condition? Do you feel like you need a pain management specialist to assist you?

Charting Tests, Getting Food Right

2009-03-03T18:51:00.000-08:00

I've mentioned in other posts about the importance of blood testing regardless of how you feel. The best doctors will take a baseline test, and better doctors will take a minimum of one test per quarter to ensure you are tracking bilirubins, CBC, and other counts that may end up being major problems, or solutions, down the line. I have found many free sites which let you keep track of medications, and have also posted about these. I use Google Health, as it is accessible to both myself and my doctor's health plan. I did a yearly check of the changes in my charts and I discovered something that my doctors may have missed.

Over the last few months, the tests that show the issues within my heart, and kidney have had some large number changes- at a steady rate. From the first to the most recent, I know now that when I began a particular treatment, the heart began reacting differently. Triglycerides, lymphocytes, and even cholesterol have greatly changed, and it seems to be coinciding with one medication that I've not been happy taking- morphine. I went from relatively insignifcant, unremarkable numbers to fairly noticeable jumps, and it's been a steady 3-4% change per month. Long term use of this medication is affecting me, and now the blood tests are confirming this.

Because the numbers are just barely within the 'normal ranges' I still have the ability to assist in getting them back to a level that will bring fewer red flags to a cardiologist. Here's the homework, and here's the research coming into play. I understand that to counter some of these numbers, I need to improve Potassium levels, among other minerals. I need to supplement with either a stronger nutritional plan, and return to the Statins which I was cutting back on over the last six months.

The studies of statins over the last ten years has been a bit of a circus. They're a miracle drug. They cause strokes. They're responsible for saving lives. They're making patients appear to have Alzheimer's. People are as confused as researchers and the only people clear on the issue seem to be in marketing departments. BUT, the truth is, statins have done more for the advancement of issues than they have done harm for millions of people. http://www.medicalconsumers.org/pages/cholesterol_skeptics.html

Now in my case, where I'm in control of MY health, I have elected to return to Zocor, (simvastatin), and to start on a regular intake of Omega Oils. Yes, flaxseed, fish oil, and in gel capsule format to ensure they're reaching my bloodstream. I've done enough research to know that most capsules and hard tablets aren't digested completely, and much of the vitamin and supplements in these forms pass through the system. I've also increased Vitamin D, and Calcium levels of the supplements I've been taking.

Over the next few months, the results of many patient studies with Calcium and Vitamin D will appear on the web, and in journals. You can read many of the tests in progress, which are promising better health for those who have hormonal issues. And, from some of these studies, you don't read about a miracle pill, or uper-Pharma which is behind the research. You're reading about scientists, biologists, and health professionals in the Cleveland Clinic, in Germany, in Italy, and in the United Kingdom doing independent discovery. Two articles explain the point far better:

http://ods.od.nih.gov/factsheets/vitamind.asp

http://lpi.oregonstate.edu/infocenter/vitamins/vitaminD/

The nutrition I've had over the last forty-five years, much in my control, has been less than optimal. I spent entire YEARS not eating a single vegetable that wasn't part of a fried plate of food. When I was in the Navy, my primary source of dinner came from Kellogg's, or maybe Chick-Fil-A. Only on Fridays did I have steak and crab legs, as was the ship's usual fare. As much as the years of bad medicine harmed me, so as my own elected way of life. I was also killing myself by not being wise nutritionally. I can't put blame on a medical system when it was just idiocy leading me to the kitchen now and then.

It wasn't until I was in my 30's that I started to ensure I had lean proteins, salads, fresh fruit, and oh- yeah- steamed veggies rather than peanut-oil dipped fried goodness. I've never really been a french-fry fan, or a potato chip eater, but now I like yam fries, (baked), and occasionally I'll have a sliced avocado chip. (raw) But I wasn't able to absorb nutrients properly. By this time, I was on enough medications to prevent digestion of the minerals, vitamins, and even trace metals I needed. I started with Flintstone chewables- just to see if I could keep to a daily regime of something better. It worked. I became hooked on ensuring I had iron, calcium, and other nutrients as part of my daily "medication". But, I slacked.

And, I paid for it. Now, I need to be a lot more diligent in my nutritional care. I see how not minding the metals, the B's, the C's, and the minerals is affecting me far more than I have ever in the past because I can read my blood tests. I can see where the changes are, and I see that many of the changes seem to coincide not only with the increase of medications for pain, thyroid, and the decrease of statins, but also the decrease in my own regimented use of supplements. Over the next few months, I'll let you know how well they've done to improve or disprove the theory that my heart relies upon them.

Today's questions- What are you skimping in your diet? Have you had blood tests with remarkable changes and can track what medications you've taken during those changes? What can you do to improve your overall health with diet as a primary source?

Never TOO Much Testing?

2009-02-16T12:38:00.000-08:00

As I read the emails from many readers who are going through a bit of craziness called health care, the pattern of testing is emerging. Women are given standard blood tests, then thyroid panels then hormone panels. Men are given standard blood tests, then drug screening and then metals, then hormone panels, then thyroid panels. Very few people are getting these tests done at ONE time and many are returning to doctors repeatedly, hoping for an answer, only to be given one more round of blood or urine examinations. Most of these tests aren't being done properly, and it's not the labs making the error.

Every test ordered needs to be consistent and it needs to include at a minimum, infection testing, metals testing, hormone testing, and thyroid testing. Each test needs to also have a tracking of urine, which should have proteins as well as blood levels included. The tests need to be the same AT ALL TIMES so that those which show variances have a level that is PATIENT specific, not just "normal" as noted by ranges determined by the National Institute of Health.

A patient needs to discover patterns of response to be properly diagnosed. Each female patient still in menses, needs to be tested cyclically. Iron levels on a luteal phase will be different than iron levels during ovulation. Women with perimenopausal symptoms whilst still in their twenties should be given the same tests as those who are in perimenopausal conditions during their forties. This either confirms or dispels the idea that she is having early onset menopause. Body temperature needs to be taken daily for a minimum of six months to determine ovulation patterns, pituitary and thyroid regulation, and even eating disorders and malnutrition.

Patterns determined when a patient is in the best possible health will rule out the issues found when in ill health. Normal for Mary may be a 98.1 degree temperature, a body weight of 136 lbs, and a blood pressure of 101/65, with a resting pulse of 62. Whereas, normal for Joseph may be 98.9 degrees, 176 lbs, 120/50, and 72 for a pulse. If Mary is at the clinic with a 98.9 temperature, there may be a serious infection going on, and if Joseph has a 98.1, he may be anemic. Both would be dismissed by most clinics. The problem lies in the misinformation of the tests themselves. No one can expect normal for one to be normal for another; not doctors, not patients, and NOT the NIH which determines "normals" on blood work. Testing needs to be consistent, and it needs to be at a level that is PATIENT specific, not "general population" specific.

Most of us aren't fond of visiting a lab, getting blood drawn and waiting for some unknown physician to determine our results. However, most of us aren't aware that we can request the results of our tests, and should keep track of them. Free services, such as Google Health, allow patients to monitor their testing by filling out simple forms that include test results, exam results, hospital visits, and medications taken. The Veterans Administration allows patients in their system to use MyHealthEVet, which keeps track of the doctor input information as well as the patient's own tracking. Know your own "normal" and it will help a doctor determine a prognosis if you are ill.

In recent years labs are now accepting requests from private citizens, who aren't handing in Physician signed requests. People can monitor their own metals, thyroid panels, metabolic levels, and hormone panels. The tests are costly, but can save thousands of dollars in medical bills. A $300 blood exam every four months, when in good health, can give you and your doctor a better sense of your wellness. And, it can monitor if you have levels of cortisol, estrogen, or even copper which seem out of whack.

Blame the legal system. Doctors are now almost completely reliant on testing rather than listening to patients relay symptoms. The world is peppered with the Malpractice Lawyers just waiting for the chance to debunk a doctor's credibility. The tests are supposed to keep a Doctor from misdiagnosing a patient. In fact, most tests results, designed through the averaging of the general populous, miss illnesses that show up later in tests, long after early detection and healing would happen. HMOs, PPOs, and even national health care systems such as the Veterans' Health in the US, or Canadian Health Care, are the primary promoters of this thought process because class action lawsuits, and lawyers who thrive on mistakes. In fact, millions of people are dead, or close to it, because SYMPTOMS are being avoided.

The best ammunition against a lawyers' designed health care program is to arm yourself with tests from reputable labs. Knowing your health patterns, hormone patterns, thyroid patterns, and keeping records of this information is going to help your doctors. It's going to help you. It's going to save money. And, it's the only protection we have against a failing health system. But, what if you haven't had a pattern of good health in some time? What are your options?

Keep testing. If you are under a doctor's care ask her to run full blood tests EVERY time you are scheduled for an appointment. Even if you are battling a genetic disorder, a chronic disease, a chemical disorder, or reactions to medication, you can start to see patterns. Does your migraine increase during menstrual cycle? Does cutting out fats or eggs from your diet affect your platelets or protein levels? Do you find that your pain increases in the morning, or in the evening? Make notes of ALL your patterns. Patterns are as truthful as blood tests because they help determine what is NORMAL for YOU. Make sure you get the SAME tests each time so you can see consistent levels. Take the tests at the exact same time of day, so you can see if the levels are related to your sleep, level of activity, or even diet.

Today's questions: Do you feel your doctors are missing key blood tests that need to be included when you are at the lab? What do you feel is the biggest mistake in the testing process? Are there times you feel more "normal" than others? Do you find that you are compared to other people, rather than to your own level of "normal?"

Doctors Who Research

2009-02-09T19:02:00.000-08:00

I searched for a new doctor when my insurance company dropped my current doctor's practice from their plan. The new insurance is supposed to be less expensive in the long run but I have far fewer choices for physicians. The first doctor I considered was put into a drug treatment program, and had his license stripped away. The second doctor had been through an indictment, and lost his license. The third was listed as a marathon runner, and that was my green flag that this person may know a little bit about joint conditions and the way bone disorders operate.

I wasn't exactly charmed by our first encounter. The office is decidedly efficient, with little room for warmth. There isn't any banter between staff and doctors. The place isn't peppered with sales items, and the sales person who bothered to show up when I was there was quickly shuttled away. That was a selling point, though. I was shuffled into an office, and then a few moments later, was bombarded with short, sharp questions from a woman who didn't bother introducing herself. I assumed she was the doctor as her lab coat had imprinted names, but I still have no idea if she knows I hadn't even seen her for less than five minutes before she stomped out again.

This is the first doctor's office I had been to in quite some time where I wasn't handed a bunch of sales items, or viewed notepads from drug companies. There was no indication that there was a single drug pushed here. The doctor looked at my forms, said, "I don't administer THOSE medications" when she came upon the morphine, and then proceeded to ask ten or so questions that didn't really tell me anything about her except she was business, and nothing but.

But, after about 15 more minutes, she returned and asked even more questions. She had read up on Ehlers-Danlos syndrome, and wanted to know about my previous treatments. She had researched my issues specifically. Everything was done as if I was in an interview for a high power managerial job. But then she said the one thing I hadn't heard in about eight years. "You've been given a lot of medication that is contraindicative, and I think we need to start from scratch."

I started to explain that every doctor I had since since 2002 has done nothing but hand me pills for side effects of other medications. I've gained 58 lbs in total, and I am feeling miserable about not being heard by anyone, including her. I saw her reaching for a document. She said, "we need to get you the right tests to find out the right diagnosis." And, left it at that.

The next ten minutes, I waited for her assistant to hand me a lab sheet. I saw tests that I have been requesting for YEARS suddenly become the first line of offense for this doctor. She has been doing research on my condition before the first visit. In fact, her partner helped the assistant by saying, "She has Ehlers-Danlos Syndrome, you'll need to look under 'syndrome' for the coding". Her partner had also been made aware of my condition. I hadn't even walked through their doors, had only researched them via the Medical Licensing bureaus, and the insurer's site. I was floored.

I know that I'm going to at least be seen as a patent who is trying to be healthy, rather than someone who only wants drugs. I know that my doctor is interested in the issues that arise from my conditions. And, I now have a better feeling, that this time, I won't be stuck in yet one more cycle of side effects. Who knows, maybe this time next year I will be back to my normal size AND walking on my own. But I do know, this is a professional who is interested in one thing- keeping me on a road to true health.

Today's questions: Have you done research on your health professionals? Do your doctors take time to learn about you and your conditions? What do you wish your doctor would understand about you, and your illnesses?

Pain and Stress - Sibling Rivalry

2009-02-02T18:26:00.000-08:00

Those of us who battle chronic pain are often confronted with depression- caused either through the medications designed to bring us relief from the ache, or caused by the illness for which we are being treated. Depression is still an unknown in the medical community, and yet medications are given to chronic pain patients that were once considered mind meds, only. Not surprisingly, the side effects from the anti-depressants are often those that mirror illnesses such as Lupus, Crohn's Disease, and even bronchial disorders. But, the one factor that seems to cause enhancement of both pain and depression is the stress of every day life.

The country is experiencing financial failures. Our families are in constant battle between job security, cost of everyday items, health care rates and insurance premiums. The education system seems to be constantly put aside for more bailouts for wealthy banking systems. The housing market hasn't been stable in many years, and Social Security is not very secure at all. With all the issues of life unavoidable, and certainly unmanageable, it appears the health of pain sufferers is greatly reduced. Stress and pain are married. We are the ones who have to wonder, what can we do to stop this stress so that the pain is at least somewhat under control?

Life is not a managed state of being. It's moments strung together by events, people, unexpected moments, and certainly unexpected health issues. We don't have a say from one day to the next in anything that happens around us, but we DO have a say in how we respond to these events, people, locations, and situations. Our response is the one thing that can help stop unnecessary pain. There are specific stress triggers and responses we can elect to have that will help us cope better.

Road rage- as someone who experienced it as a passenger, as a driver, and on the roadways with others who seem to lose their minds once driving- I know it's part of the stress of anyone who is behind the wheel. Twelve or so years ago, I was living in San Francisco, and battling a commute that although was short in distance, was hours in time. My left knee dislocated many times as I used the clutch to lower gears and I found the pain unbearable. Add the anger of those who are in no mood to be behind a slower driver, (riding in the right lane, by the way), and you'll see a lot of grumpy gas guzzling SUV's swerving in and out, fingers flipping, and dozens of near accidents, and a few on-purposes. Back then, as traffic slowed, I'd blow kids Bubbles out the window. Generally that was distracting to me, and I never felt the ire as others would huff around me.

Everyone has SOMETHING that is of interest-whether it be music, sports, television shows, puzzles- whatever it is, you have something that you enjoy that's not car related. By simply tuning your radio, MP3 player, or CD player to the one thing you enjoy, you can help reduce your own aggravation on the roads. For those in public transportation- it's a great time to pick up hobbies like knitting, reading, word games, and even learning something through the free college courses found on the podcasts online. If the place you are in causes you stress, mentally remove yourself from that place.

People- We all have someone who may talk too loudly. There may be someone who has a habit of rambling when you want silence. There may be someone who never talks and you need to be socially active. Someone may be a busy-body, while another may be distant and misguided about your life or intentions. Whomever it is, or however you know them...people cause stress.

The one thing you can do to prevent people causing stress in your life is learn that people are who they are no matter what we want them to be. The only way we can let people NOT affect us is to completely remove them from our lives. If that's not an option, such as a co-worker or a family member, your only option is to find something within yourself that will distract you from the other person. For instance- if you see the color blue and enjoy it, start to look for the color blue when that person is getting on your last nerve. The distraction puts you in the moment- and being in the moment is about not letting things build up in your emotional closet.

What about situations? Can you really take your mind off of situations such as job loss, bill paying, taxes, broken cars, or even insomnia? Does hearing the news about Iraq, seeing an animal abused, or knowing about a kid losing a parent become part of your every day life? Worry is the primary source of stress for most people. Worrying only leads to two things- an outcome that is exactly what you pictured, and were unable to change despite your worry, and an outcome that was absolutely wonderful, and you worried for nothing. Worry is a self-perpetuating emotion. We worry and we worry about what we worry about, and we worry about not worrying. It's an emotion that eats at us the way children wolf down Halloween Candy.

We are going to be faced with life issues that are completely out of our control. Someone may be laid off because the company is laying people off. A car may break down simply because it's had one mile too many. We may be unable to pay our bills. This is a life that is full of events and trauma that isn't within our control. But, we can do small things that make us feel a little bit more centered, and a little bit more part of the solution instead of a victim of our circumstances. If you can't earn money, find small ways to save money instead. If you can't find a job, find ways to make the skills you have more marketable. There are free university courses on line, and even more through podcasts. If you find that you have limited transportation, think of it as a way to improve your health by giving you a chance to walk, ride a bike, or even run.

Stress doesn't have to run your life. It doesn't have to add to your chronic illness or chronic pain. It can be as much controlled as your hair color, your diet, and your choices in friends. All you need to do is understand that you will have times that feel out of control. You will get through them. You will learn to live life as if the days you have are the greatest days you've ever had. If you don't, you'll find the pain stronger. You'll accept that you are not a person who can grow and learn from the life around you.

When all of these factors are present, and you still have issues with pain that are exacerbated by the stress around you, there is a method of relaxation that was studied and proven effective by the Deaconess Hospital, Harvard Medical, the Dana-Farber Cancer Institutes, and even Tufts. The method is called The Mind/Body Technique. Using simple breathing exercises, and cognitive recognition, you can learn to handle stress by learning how to live in the present. Several books exist on this, and can walk you through the techniques. Many people intuitively talk themselves down from feeling overwhelmed, but for those of us with chronic illnesses and pain it sometimes helps to attend workshops and meet others with similar issues. You won't need medication, you won't need equipment. You just need the ability to sit quietly for a few moments.

Today's questions- What ideas do you have for removing stress from your life? Do you find a hobby or a pet distract you from your pain? Do you have a friend, co-worker, or even an acquaintance you find able to listen to you when you are feeling overwhelmed?

Is it Swelling as a Reaction?

2009-01-26T21:35:00.001-08:00

Like most women in the world, I've had weight problems. Like a majority of these same women, I also have a mistaken perception of my physical features. When I feel thin and in shape and people take pictures I see the pudgy chipmunk cheeks and wonder why I couldn't see those before the images existed. When I feel as if my legs are so swollen I can't fit into clothes that aren't labeled Barnum & Bailey, pictures show me as lean. Weird. But true.

For many of us, weight is just a minor inconvenience, with just simple reasons for it to change. We may be on birth control, (average weight gain 5-15 lbs), we may be on medications, (antidepressants, for example, can slow metabolism down so we get about 1 to 5% of our body weight added), or we may have a reaction to foods, such as sodium causing water to turn us into balloons. It's an average of 10 lbs of fluctuation a month even if you don't take medications or have a limited salt intake. It's just life. You weigh less after bowel movements, you weigh more after working out due to water and muscle weight, and you weigh less if you haven't had any liquids. It's not a weight issue, it's a healthy body you and I need to focus our attentions, towards, and this will help keep our body image in check.

As a child, I was not exactly a skinny kid, except in third grade, when, for some unexplained reason, I suddenly looked like a rail. I went through my prescription history and learned when I was on asthma medications that seemed to work as amphetamines do, my weight was remarkably increased. Inhalers didn't have steroids then, and the primary use of caffeine for children was in opening up airways. Doctors prescribed benadryl and coffee. After much testing a full cocktail of allergy meds became a monthly ritual. The years I had my bicycle also proved to be my lean years. But, I was given allergy shots, and the asthma dissipated over time.

When my parents went through a rather dramatic and drawn out custody battle, my weight suddenly shot up. It was puberty that was at hand. My hormones were a little nutty, and even back then, I spent at least one week a month on my knees, on the new prescription drug, "motrin", and even had muscle relaxants prescribed. At eleven, I was passing into the new world of menstruation, and all I had read and had been told led me to believe that women just have to deal with cramps, pain, and other distress that came along with womanhood. I was expecting to grow by massive leaps, and didn't seem too surprised when I was pudgy again.

Over the next three years, I was given Librax, Motrin, Robaxin, and phazyme. You could track the dosages in my history, look at my photographs, and tell exactly when my dosages were going up, and when they were pulled back. My body was not happy with the medications. Suddenly, I went off all medications, except for those required for the managing of Irritable Bowel Syndrome, the day I went to bootcamp in Orlando, Florida. The decision was more a matter of keeping my body as healthy as possible, despite occasional asthma and feminine destruction. I wanted to have a clean slate for my new life.

A friend of mine had Crohn's disease, and I visited her in the hospital not long before my flight. She was a tiny woman, with freckles, red hair, and although African-American, she looked like a little Tinkerbelle. The show we did together even had her cast as the fairy creature. I was always in awe of her courage in handling her illness. She was so used to it, and yet she was there, at 17 years old, with IV's in her. She was the first person to tell me, "You look swollen", and talked to me about the medications I was on. We had worked together in a Boston Youth Theater, and her brother played leads in the shows. He walked in just as we were finishing our chat. I never saw her again, but I always remember that conversation.

Suddenly, bootcamp was over. The winter in Florida was transformed into a spring in Chicago. During that summer, I took no medications at all, except Tylenol during cramps. My mental stability was all over the place, as I was unknowingly in withdrawal for the Librax. But, the oddest change was that my weight suddenly leveled off at 119 pounds. I stayed that way for twelve years. Occasionally, as I was placed on other medications for different reasons, I would notice my face and hands a little puffier, but I never tracked the meds on a time line with my weight.

When I was in my early thirties, a doctor placed me on antidepressant medication. It was at this time that I really started to notice that no matter how much I did, no matter how long I was at the gym, no matter how many times I went dancing with friends, waited tables, worked nights in shows- I couldn't lose the sudden increase of twenty pounds. I asked my doctor if I was experiencing side effects from the medication. He said, "Not likely. You just seem to retain water. You're getting older, you know." Really? I hadn't noticed. There's a photograph if me riding horses on my 30th Birthday and I am a size five. Three years later, I'm on the same horse, and I'm now an eight. Something wasn't right.

For most of my thirties, I worked out heavily. I was sword fighting in ren-faires, wearing costumes that were 20-30 lbs each. I was at the gym. I was eating one meal or less a day. But, there was always medications in my system. I started showing signs that the Ehlers-Danlos had progressed, and there was a three year period before I started with the Veterans, and Medicare, that I had no medications in my system at all. Suddenly, I was back down to 119 pounds. Nothing had changed, except the drugs. In fact, I was doing less than ever, so I should have been gaining weight. The loss was rather rapid, nearly 50 pounds in four months time. And it stayed off. But, then I was given new health care, and the doctors were concerned that the pain the dislocations caused was not managed.

When I was 40, I was given narcotics and opioids to handle the pain. Over a short period of time, my weight started to creep back up again. I was given antidepressants. Again the weight would rise. Nothing else had changed, just the drugs. I went to have my septum repaired and one of the interns noted that I had prednisone, and was showing signs of edema in my hands and feet. He even marked in my chart that my face and eyes appeared puffy. I started a diary of weight changes, swelling changes and even when my hands were puffy. The results startled me. The doctors barely shrugged it off.

During the times I take my pain medications I swell up between 3-5 inches around my ankles, hands, belly, and even my head. When I take meds, I have swelling that gives the appearance of being drastically overweight. It took three years for any doctor to remark about this. I only wear clogs, as I can't buckle, tie, or zip, and she said to take my shoes off. I told her I couldn't. My feet were swelled up into the shoes. She did a test to see how big of an indent she could make,and how long it lasted. Now I was given a new drug- a diuretic. I am supposed to take this diuretic in the morning.

The diuretic doesn't seem to work at all until the times of the day when I am taking pain medication. Suddenly, the swelling starts up, and the trips to the bathroom are frequent. I brought this up to the Veteran Health doctor, and she told me, "Yeah, that's too bad". I gain up to twenty-three pounds in a week during times when I have many dislocations, and drop down to about six pounds within "normal" when I am relatively joint stable. The doctor is not convinced that my metabolism has been affected by pain meds, and keeps trying to tell me that "Morphine makes you skinny!" as if I had no idea that the correlation of the opiate and my weight chart are simply coincidence.

However, the FDA seems to disagree. In fact, it's an antidiuretic. Swelling will occur. Even Merck, the medical students manual for education, and one of the largest producers of drugs in the country posts directly on their site morphine decreases sleep, libido, increases swelling, and weight gain is expected for long term users.

Today's questions- Are you noting in a diary or a time line any physical or mental changes that occur when you take medications? Have you been told by a doctor to disregard side effects? What has been the biggest surprise discovered by reading the medication inserts for your prescriptions or over-the-counter meds and supplements?

Health for the Few, Health for the Masses

2009-01-24T23:08:00.000-08:00

The term "getting healthy" is a great way to provide a sense of purpose. The term "getting into recovery" is misleading. It leads the person to believe that s/he had a sense of health at one point, and many people in recovery only are familiar with their illness, their weight, their injury, their addictions. There isn't a sense of control of health. Yet, there IS a sense of loss, and that leads people in "recovery" to discover that they are only recovering feelings that lead them back to the pain they are supposed to be healing from in the first place.

Many of my friends are in different class struggles at the moment, and looking to find a place of "getting healthy". In the last five years, doctors in the area we live are leaving the world of HMO's and PPO's and opting for Concierge Health Care. When I was a child, we used to have a family doctor. He used to live in a house, worked out of the bottom floor, and we would visit him once every month for my allergy shots.

The same procedure under an HMO entails a wait of 40-45 days for an appointment, and an RN giving injections. Health isn't discussed. Back then, we'd pay in advance, for ten appointments, at $10 an appointment, which covered the cost of the shot. The doctor also noted changes in my skin, hair, eyes, and would take my temperature, and blood pressure. It was often far too low, in both, and he would schedule a regular appointment to ensure my asthma hadn't progressed.

The Concierge Service Doctors are similar in that they are supposed to treat you with dignity, as a preferred patient, as someone who deserves to be seen. The difference is that as a child, my parents paid a fee to a man who cared about my welfare, as the doctor who served to help my mother give birth, and who saw me from an infant to a pre-teen. The Concierge Service allows a doctor to put you on a preferred list, for a very high fee, and it only matters to him for a year. After that, you either need to give another enormous fee, (which doesn't include the cost of the medications, appointment, or incidental hospital care), or you are shuffled back into the system as a standard patient. You simply aren't a concern. The bottom line is the purpose of the profession, just as it it is for the HMO.

People have been rumbling for years that if we had a Universal Health Care System we would have and end to "have-have not's" method of care. Several of my friends were treated to the health systems in South America, Canada, and Europe. I've heard good and bad on both sides, and the bad stems from greed which still exists regardless of who is paying. A doctor, specialist, or hospital will gladly take cash over government vouchers, and will gladly put that cash paying patient ahead of the one who is assisted by the state. However, many countries have a check and balances system which prevents this, allowing Hospital Patient Advocates, or Ombudsmen serve as a legal proxy to the patient. The hospital answers to the advocate, and therefore the state, before answering to the patient.

For those who had bad health their whole lives, the idea that a Universal Health System will end that nightmare is just not realistic. It's a system that puts patients into Recovery, but not in promoting the future good health. It allows patients to feel trapped by their illnesses. This system is supposed to do much to help preventative care, and to help handle emergency care, but for long-term illnesses, there isn't a lot to be done except lead a patient to being "stable". Cancer patients, chronic pain patients, genetic disorder patients learn to maintain themselves, but it's rare that this system will cure or treat someone who would just take up more financial liability than someone who simply needs a flu shot.

Again, my years in the Veterans Health care system has been a constant struggle to get doctors to pay attention to symptoms rather than tests. These doctors are people who have no financial or educational gain to provide me with anything differently. If the system were run through a medical testing facility, I may have a fighting chance to know what it's like not being in a constant state of "recovery". Instead, I would be on the road to TRUE health, and I would learn what it would mean to have a normal, or at least as close to normal, state of being.

My husband has private insurance. I have a Medicare Program in addition to my Veterans because of disability. He and I receive similar care. My deductible is set by the agreement made between the insurer and Medicare. His policy is determined by the previous people on the plan, and the likelihood of future health based on past documented care. My disability payment is garnished to pay for my program. His employer set up an agreed amount he would pay for his. The wait times I experience are greater, and I do have to meet "criteria set by Medicare" before I am prescribed medication or procedures. That is the key difference. But, he is as likely to have the same surgeons, the same prescriptions, the same specialists as I do because they are approved by Medicare. In fact, he finds that he needs approval for prescriptions that aren't used often by people in his program, and that creates more issues for him.

If there were a Universal Health Care system set into place that allowed patients to elect a governmental program, or private program, it is likely that due the impact on the finances of small business owners, and larger corporate retirement programs, many people will end up in the government program. The cost of care privately has become prohibitive, and even substantially effects hiring policies of companies that are understaffed.

So what happens to the Concierge doctors? What happens to the finances of the hospitals, surgeons and specialists who rely on private paying citizens for their check? Some have said that doctors would receive better and free education to be part of the program, cutting millions of dollars every year from the Student Loans. Others suggest that the scientific sector would benefit because these doctors would have more reason to seek out private jobs within medical research. I don't know if either scenario is true, but it is certainly a step forward. Some doctors are working to keep the Concierge method in place, and to make a cultural difference between those who "have" government care and those who have Concierge care. The rich are expected to support the rich.

Today's Questions- If you are currently a patient in a governmental health care program, do you feel you are getting less care than someone in the private sector? If you are a patient with Concierge care are you concerned about the possible move towards Universal Health Care? If you are somewhere in between, do you find it hard to get basic or specialist care?

Sometimes Natural Just Ain't So

2009-01-19T20:56:00.000-08:00

I have spent the last few days on the FDA sites, learning about my medications, and supplements given to augment them. First, I want to warn you- you may be frightened by my findings. You may find yourself running to the bathroom, taking all your prescription bottles, and "extras" like Vitamins and over the counter meds, and comparing them to the notes you will find. I warn you, this is exactly what I did, and I'm happier for it.

The FDA was started to help regulate medications sold to patients during the mid-twentieth century. It was designed to be a watchdog over the pharmaceuticals, and more so, over the medications given to patients as prescription. By the 1950's, you needed a specific prescription to get medications, rather than having the apothecary mix them for you. Dosages, chemical levels, and the efficacy of medications are all under scrutiny by the FDA before a drug is sold to the public. However, efficacy isn't always tested properly, and fully before these drugs are released, and supplements or food items aren't considered by the FDA.

Before you wonder, is she completely against ALL medications? No, I'm not. At all. I have grown to admire Jonas Salk far more from the studies. He was someone who wouldn't patent his polio vaccine, as he saw that it belonged to all the people who needed it. He wasn't trying to maneuver a medication into the market so it would provide profitability for a corporation. He really was a great medical professional. I have learned about the work done at the Cleveland Clinic and the doctors who are working to find cures rather than line wallets. But, there are medications that are in your homes, NOW that are still being tested for their actual uses, the contraindications of using them, and the harm caused, including deaths, and you are the test subject.

Several doctors have told me to take vitamins and increase my use of mineral supplements. Some of them said this to me back when I was still in grade school, noting the tearing fingernails, and bad skin that kids get as they enter puberty. I thought taking a multivitamin was the smart way to go. For a few months, I ended up finding myself in the bathroom a lot longer than I needed to be because of cramping and pain associated with Irritable Bowel Syndrome. The reality was that I had been exposed to a lot of milk by-products. For years, I was lactose intolerant, and I had only created a bigger issue within my body by trying to help out.

Friends have offered their supplements to me as miracle wonder cures for the joint disorder I have, or for the usual day-to-day issues we all have. Headaches can be cured with tea tree oil. Eucalyptus is a cure for asthma. Coconut Oil relieves dandruff. The list could go on for hours. Some of the biggest offers I have had were in tea form. Green tea will stop me from eating. Ginseng will make me smarter. My vision will increase if I have carrot juice tea. And of course, St. John's Wort cures everyone from depression.

There are still tests going on for the use of supplements and most of the medications you have in your home. Some of these tests are done through REAL patients having REAL symptoms, and are noted in a database called MedWatch by physicians and other medical professionals. The information is voluntary, and is gathered for evidence in favor of or for failure of the chemicals we place in our bodies. From nail polishes to chemotherapy medications, there are those who do keep track of the issues we have faced, and do place that information in to this database.

But, there is still a huge area of concern over any medications which don't show signs of their effectiveness. Since programs like MedWatch are voluntary, the only way to find out if a specific medication causes problems is to read the labeling. Read all of it, including the section that says "inactive ingredients".

Sign onto sites that allow you to test your meds against their side effects of using OTHER medications. Such as, if you use Codeine, could you still take Motrin? If you are on birth control pills, do you have a problem if you take migraine medication? How about taking Calcium and hormone medications? Do you know what happens if you take a green tea, with caffeine, and a blood pressure medication, too? How about this- when you visit your doctor, do you bring in all bottles- prescription, over the counter, AND supplements which you are taking?

By going through my medications, and viewing the reports on the FDA sites, as well as the Drug Interaction Checker websites, I discovered three of my meds are on a "watch" list. Two medications taken together can cause heart problems. And, six of my meds are list "although rare, death or internal bleeding may occur." Six of these are likely to kill someone. This was discovered through actual reported deaths by doctors who used MedWatch. Hospitals aren't required to autopsy, or report if someone dies due to a medication. The number of deaths may be greatly under reported.

No one is saying "stop buying meds". I am saying be educated about what it is you are taking. If you don't ask your doctors about the side effects, don't become a statistic who is facing unnecessary trauma, or even death by assuming s/he would tell you. When you get a prescription it comes with a form that tells you the chemical compound, the details required by law, and certainly and most importantly, the side effects. If you are thinking about trying a medication, first visit the FDA sites and see what they've got on them. You may save your own life.
Here are a couple more drug interaction checking sites:
PDR Health This site is done by Physician Desk Reference, the predominant tool for pharmacy and drug prescribing information for most US Doctors.
Drugstore.com

Today's questions: What would you do if you discovered the symptoms you were dealing with are actually the resulting side effects of another medication? How can you better educate yourself while still in a doctor's office? Are many of your medications new as of 2001, or are they older formulas?

Melody Petersen is YOUR Champion

2009-01-13T18:28:00.000-08:00

In hunting for websites and education resources for patients, I get emails from people trying to sell me their medications. I get emails from people who are trying to convince me that things like Goat urine and Emu oils are the cure I am seeking. And, I get emails from people who are also fighting their insurance companies, their doctors, and even their own families for an opportunity to simply be heard. And, every so often I get emails from book companies that offer ideas for different resources. It was through this email that I discovered a writer who understands the American medical system so well she wrote a book about it. No other book can compare and I need to recommend "Our Daily Meds" by Melody Petersen to anyone who is capable of reading, and an audio version to anyone is not.

When I was a child, I remember news stories about Miracle Drugs, and then talk shows interviewing well-dressed, sage-looking people who would sputter on about what we needed as a civilization to survive. Mike Douglas, Phil Donohue, and 60 Minutes each focused our attention on pills and super-drugs designed to eradicate our depression, ensure our vitality, and certainly end all need for diets. In truth, the marketing of these medications has not changed much from the days when Snake Oil salesmen would come to towns and offer a song and dance regarding the magic of their potions. The only difference is the numbers in millions of people who are now sold these oils, disguised as real cure-alls.

Aspirin, antibiotics, and anesthesia did change the landscape of medicine so that people would be assisted- enhancing the quality of life. The packaging of drug after drug, that never gets tested on the demographic for which it is alleged to help, is just a new way of selling snake oil. Melody Petersen wants YOU to be aware of these tactics and the abuse of pharmaceutical companies to the detriment of our health.

Within the first two chapters, you are given examples of pills that have, in fact, killed people when tested against placebos. The medications were approved through the FDA, not through extensive tests comparing efficacy against similar medications, but against their efficacy in comparison to sugar pills. Asprin isn't tested against another form of pain medication. Meridia isn't tested against another form of appetite control. All responses are based on that formula's failures against simple sugar. We are, in fact, sold medications through marketing, and NOT through actual patient histories. The general public isn't tested, in broad studies, encompassing children, seniors, men and women, of different nationalities, or different diets. The testing of medications is done on volunteers, generally between the ages of 18-24, generally male, and predominantly through the idea that the people trying these will be compensated for their responses. A man will be tested for a birth control pill before a woman will.

Ms. Petersen exposes dozens of medical failures. She also exposes the increasing number of medical professionals who are swayed by gifts, financial gains, and by vacations, all funded by pharmaceutical companies to promote and increase the number of prescriptions of their current hot medication. Many of the stories posted in the press are written by authors who are subsidized directly by the marketing departments of drug companies. More money is spent on marketing medications in one year, than is spent on educating our children in school systems, over a ten year period. There are more medical researchers who spend their midnight oil on the discovery of wrinkle cures than there are on cancer cures because there are far more dollars to be made through a general population seeking youth.

Vitamin deficiencies in our diet, now peppered with processed food, drive-through dinners, and lack of vegetables and fruits cause myriad problems. But, pharmaceutical companies help to promote the idea that new illnesses have come to fruition over the last twenty years- including restless leg syndrome, bladder incontinence, attention deficit, and the always controversial fibromyalgia. In fact, these issues have been in our population for thousands of years, but the marketing of medications to 'manage' these issues has only been a billion dollar industry since the increase of mass communication. Melody Petersen points out the ways industries have not only tried to get the general public to beg for these cures, but the ways these companies have re-worded, and re-tooled natural issues in our lives into a financial windfall by inventing illnesses and catch phrases to describe them.

Insurance companies are in constant conflict with these corporations. If you look through the Medicare Approved Prescription list for 2009, you will find that much of the formulas listed are older than fifteen years. The general public has gone through at least some long-term history with the drugs approved. Remeron, for instance, is an older medication for both depression, mild psychotic episodes, and attention issues. It costs pennies to make this drug, and the generics are available, as mirtazapine. Ritalin, Paxil, AND Ambien are prescribed to patients for the same issues that one medication has proven in aid to these patients. Meridia, unavailable as an antidepressant, is not marketed as any thing other than a "weight control medication", yet reading the description of the chemistry put into this drug, it is has affects on seratonin- the chemical believed to have an affect on depressive disorders. It isn't available in generic form, so the insurance companies have less interest in approving the drug for depression.

Melody Petersen also points out that our doctors are often educated directly by the pharmaceutical companies, both in their medical studies, and beyond. Wings of universities are named for drug corporations. Events are sponsored by the fad drug of the month- something muttered by Oprah ends up on the news, whereas a researcher in Italy who uncovers the connection with fiber rich diets and breast tissue density isn't given a mention.

The fact is IF there were magic pills to prevent aging, stop us from getting heavier, or increase our sexuality and attractiveness to the opposite sex, the plastic surgery industry wouldn't do so well in places like Hollywood, where beauty is the primary concern of many of those seeing medical help. If pills could stop us from being socially awkward, force us to pay attention, and stop sadness, there would be no psychotherapy. There are improvements in treatments of epilepsy, Alzheimer's, and breast cancers, among other illnesses and syndromes. However, the advances in our health are always secondary to those methods that increase stock holdings, cash value, and the price of a medication.

Petersen is your champion, and she's mine, for pointing out that our doctors are sitting in offices decorated in the logos of drug companies. We spend less time with our doctors talking about the side effects of a pill than we do watching a commercial for the medication we're given. She also wants us to understand that covering up side effects of one pill with another isn't a way to improve our health- and could cause long-term issues.

Today's questions- Who has pointed out different medications you could take for your conditions? Have you ever felt pressured by a doctor to "try" something you didn't feel was right for you? Do you find yourself talking about medications because of television, internet, or magazine ads?

"You're on the Net too much"

2009-01-11T18:07:00.001-08:00

When I first started learning about what was going on with this body of mine, I started out by reading the medical texts books put out by Merck. The Merck Manuals are the most looked-to sources for medical professionals, and the Physicians Desk Reference is the one guidebook found not only on the desks of medical practices, but in the Pharmacists tool kit. It's even used by those who determine the outcome of disability applications. I figured, these two sources would be the primary information location, and I would easily discover all that I needed to know about Ehlers-Danlos, IBS, and depression. I was in for a rude awakening.

The internet became part of my daily life back in 1986, when I was a student at Massachusetts College of Art. I signed onto a BBS, with a 300 baud modem, on an Apple Lisa, that probably cost more than my current car. I was studying computer graphics on an IBM Targa and an Apple IIGs, and video on an Amiga 500. (I can now do all of the work I had with three computers, on one laptop in a fraction of the time, and most grade school kids learn what I did when they're still in kindergarten.) But I have nearly 23 years of experience on line, and I know there is as much false information available as there is truth. Wikipedia is not part of my studies, except for hobby based activities. Rumors make for bad medicine.

Nothing is more dangerous to our health than doctors who are intimidated by our willingness to learn. Today we can read any complaints against our doctors no matter where they've practiced. We can read others experiences with medications, and we can meet entire communities of people who are experiencing our symptoms. It was via the net that I met others who served as 'test dummies' to rheumatology students, and found out about the Ehlers-Danlos National Foundation. I discovered that there are even better organizations overseas, with Italian doctors who are in current trails with EDS patients. And, I learned that medications that were handed to me in almost a cavalier fashion were going to leave long-term effects that would create life-long struggles with autoimmunity.

The first time I said to a doctor, "I don't think I've been battling depression since I was a teenager, I think it's hormonal, and I think it's useless to hand me yet one more antidepressant", you could just about hear the doctor smirk. I had a dent on the top of my head where I was pat, and heard, "No dear, you're on the internet too much, and you've been doing reading, hmm?" We have to remind the doctors, a majority of them spend less than one hour of learning time about our particular illnesses back in med school, yet, we spend several hours a DAY researching medications, alternative therapies, and certainly updated research. I have a subscription to Lancet, New England Journal of Medicine AND Merck's website. I don't just visit WebMd.com checking a symptom checker. I had understood that my symptoms were directly related to my cycle and I had a long term record to prove it.

Each cycle, whether heavy, light, or in between, I noticed when I would bloat. I would mark out on a chart when I would have mood swings. Each week, I would note that there were days when my edema was extreme, and other days when I would have to urinate at least once every 35 minutes. The VA gave me a new GYN after my regular doctor there was fired. The new person in charge of my health is Dr. Mary Schram, and she was the first one who looked at the records I kept and said to me, "I think you have Polycystic Ovaries, and I want to get you in for a sonogram."

Sure enough, the tests showed I had built up years of scar tissue and years of cysts on my ovaries and fallopian tubes. I am extremely intolerant of estrogens. I had already known for many years that I was unable to carry a child, and with a genetic disorder, that wasn't a priority. But, I had struggled with many years of depression, and the idea that my hormones were directly related to this made far more sense than anything else I had discovered. And, I never could stay on any one birth control pill for longer than a few months. Every time I had soy, I would become ill. My body was screaming at me "PAY ATTENTION TO YOUR HORMONES!" and I was trying to get a doctor to hear it, too. Finally, Dr. Schram said to me, "Your ovarian cysts are causing havoc on your body."

For years I was given so many antidepressants, antipsychotics, and other mind related medications I was destroying the thyroid, my own hormone regulation, and certainly had caused issues with my liver and pancreas. My gallbladder reacted with stones and pain. My thyroid reacted by turning off, and growing nodules. My pituitary reacted by sending adrenaline and my body had an irregular melatonin level. Nothing can work the way it was intended as all the regulators in my system were altered by misinformed medical professionals who dismissed symptoms. My immune system now has begun to fight against every joint in my body. The swelling and pain proves to be incapacitating, with edema being the one symptom that no doctor ignores.

I learned about Polycystic ovarian disorder and studied it for years. I had always suspected that my body was responding to the nodes. I can tell you the exact days of the month that I will be in deep depression, the exact days I will have manic mood swings, and the days I will be running back and forth to the lavatory. Yet, because I researched my own condition, I was dismissed by many people who claimed to know better what my body was doing.

Today's questions- What have you discovered about your body online that you would like a doctor to explore? Have you been to European and Asian websites to learn about your condition? Do you find there are people on line who are more inclined to know about your situation than your local doctors?

They Say "Live With It"

2008-12-29T23:32:00.000-08:00

One of the worst things any doctor can say to a patient is "I guess you're going to have to live with it." It takes away any feeling of being able to get through things. It stops the patient from trying to get through whatever it is s/he is going through. It stops the doctor from trying to find answers. It breaks the oath of "First do no harm".

The problem with this oath other than that many doctors forget about it after swearing to it- is that it asks the medical professional to honor "the Almighty" whereas Hippocrates offered this to Apollo. I supposed a little fiction in a lot of science is warranted for those who aren't sure what facts are, and what is fiction. When a doctor swears the tenets of the Hippocratic Oath the idea is that s/he will:

Promise to complete duties by all things known to be of virtue and power;
Continue studying the science of medicine, in respect to those who have paved a way of study before;
Follow treatments based on experience and judgment, and do no harm, including never administering lethal doses of medication;
And, my favorite quote "I will go for the benefit of the sick and will abstain from every voluntary act of mischief or corruption and further from the seduction of any patient."

If a doctor- or any medical professional tells a patient, "Live with it", there's almost an act of complete corruption in the simple statement. It's a statement of "You're not really sick, and I can't help you." Or it's a comment of "You're making up this, and I have no time for you." The one thing it isn't is a statement of the oath. There's no compassion. There's no attempt to honor teachers and those who studied beforehand. There's no attempt to heal.

No one has to "Live with it". We have limited finances, and there are clinics that will offer free or sliding scale fees. We have insurance, but it doesn't cover the medications needed. Okay, well there are discount RX services, and some pharmaceutical companies offer free or MASSIVE discounts on drugs that include antidpressants, blood pressure, and even birth control options, and RX Assist is great at pairing up patients with meds needed.

Your doctor is your employee. You are not expected to be berated, nor are you expected to be treated with disrespect. Many medical offices list the Patient Bill of Rights. There was a push for a federal mandate for this, but it's never gotten past the discussion phases. Your doctor works FOR you, and you are not his or her assistant, target of humiliation, nor are you supposed to take everything they say as the FINAL statement. You can get a second opinion.

If you have pain, you can get tested for the extent, and the source of pain. If you have symptoms, and the blood tests aren't showing the information the doctors need to prove you have an illness- ask for additional blood tests, and ask for the results of past tests you've taken. By keeping track of your levels you can see what is Normal for YOU and not just the guidelines set up to include the general public. The "normal" ranges for many tests are often based on the samplings of a very few people. It isn't necessarily YOUR normal range.

For instance, for years I had a very low body temperature. Whenever the doctors took my thermometer readings, they saw an unchanged 98.2. Four years ago, the body temperature dropped to 97.3, which stayed that way for years. It wasn't until I started taking a thyroid replacement therapy medication that I started seeing the body temp moving up. For years, when I was breaking out into a sweat, I was told I didn't have a fever because the temp was 99. For someone who has an average of 97.3, the 99 degrees is certainly feverish.

Keep track of all your levels of all your tests. I have records of DHEA, Estrogens, Thyroid panels, along with regular RBC and WBC counts. What I discovered is that my estrogen levels are quirky, my "sex" hormones are almost gone, and the progression of my Bilirubins has been as off as my Lymphocytes. I've got results that show a long term decline and apparently it's immunity based because the numbers read for those who have been battling viral issues for a very long time.

Keep a diary of symptoms. If you monitor your daily ups and downs you can determine if there is a change in your illness after meals, after waking up, when sleeping, or whatever it is that seems to become a pattern. Notice if there's a specific time of the month. Try to find a pattern that shows you if you have more symptoms during a certain weather period, or when there is a season that seems to add to your problems. Note all of this.

Keep a diary of your diet- including Supplements. More people are discovering that taking even vitamin pills can drastically affect the way they respond to prescriptions. Bring all of these reports to your visit, and include ALL medications, including over-the-counter pain, sinus, and even protein shakes. If you drink soy milk, snack on veggies, anything that would possibly affect your health in any way should be noted.

Today's questions- What have you had to "live with" that you believe can be helped my medical attention? Are you seeing a holistic professional? Have you been told by doctors you can never be healthy?

Being Different Is Being Better

2008-12-21T19:07:00.000-08:00

Tonight the Learning Channel, a branch of Discovery Television, showed a special taped over the last year or so called World's Smallest People. Because of my own illness, I wasn't able to view the last few showings because I was wiped out. But, tonight it's on early enough, and there as big as life is my friend Tanyalee Davis.

Many of you know me as a stand-up comedian. I met Tanyalee online years ago, as part of a group of comedians who talked about our road gigs, clubs, and comedy in general. She always struck me as someone who just got life by the balls, and knew exactly where and when to tug. She's also the most secure person I've ever met, as far as being who she is in her own skin. Tanyalee is also, coincidentally, a dwarf. This makes sense about why she was on the show I'm watching. When I first saw her on stage at the Improv, we were doing a show reuniting all of the comics, including Doug Stanhope, Steve Marmel, and Rob Little. Just a great group of people who had a love of making others laughing.

When she met me, I was going through some major depression, or at least was told I was. I was not as thin as I wanted to be, but certainly not large. The meds put on about 12 pounds, and it made me uncomfortable with myself. And, she was just all out sassy, sexy, and never once came across as "dwarf", like people would remind us she is. In case she forgot, there occasionally were those who stared, pointed and made comments. It bothered me, but not Tanyalee. She used it as an opportunity to pitch her show. That's when I knew I'd be friends with her for a long, long time.

Not too many years ago, I started feeling uncomfortable with myself again. I wrote to her, and asked how she could be so secure with who she is, and not feel depressed about feeling "not the standard of pretty". I asked this as I was feeling very unacceptably of who I am, and what was becoming of me. Prednisone was coursing through my system, and I was getting depressed over my upcoming wedding. She wrote to me, "Who cares? What do you feel like?" And that made more sense than anything I could have gleaned in Self, or via a chat board.

She and her sister stayed at my apartment once, back when I lived in a two room studio. I marveled over the life changes she had to make that I completely took for granted. When she had to use the restroom, she needed a stepping stool, and a scratching stick that allowed her to wipe herself. When she wanted to go to bed, she used a stool to get up to the mattress I had laid on the floor. To open the fridge, or even to pat my dog, (a shepherd mix), she would have to use furniture to position herself. Her sister, my height, let me know about their childhood in Canada and the ways Tanyalee would handle things like a water bubbler in school, or the gawks of strangers. Her sister was a big fan of what was accomplished simply because Tanyalee wasn't different- she was better.

I think that attitude made a huge difference in who Tanyalee is. She can get on stage in front of hundreds, or thousands, and confront them with their own assumptions of a "midget". She doesn't wear kids clothes- she wears breast revealing, sexy, adult shirts and dresses. There is a little alteration here and there, but she isn't a doll, nor does she dress like one. She's a married woman with a full sexual life, and she really LOOKS like a woman who is comfortable being sexy.

Almost a year ago, she had to start a series of spinal surgeries due to an issue that is part of the type of dwarfism she has. Spinal stenosis constricts her spinal column, and was leaving her with pain when she walked. It wasn't too long ago that she had also been hit by a driver who claimed she "fell from the sky". Marty, her husband of ten years, stayed by her side as she went into hospitals, and again for the weeks of recovery she faced in a rehab hospital. I was fortunate enough to be there when she was walking for physical therapy, and got to see how powerful she truly is. Where most people going through this surgery would take months to walk, she was on her feet in a matter of weeks, and walking in circles around a big room. She is simply too stubborn to be "disabled".

Tonight I got to see a bit more of Tanyalee's determined spirit. She is shown hiking with her husband up Red Rock Canyon. The show reveals her horrifying issues with her spine, and her surgery. I got to hear the behind-the-scenes stories as she was filming, and how difficult it was on she and her husband to handle cameras being part of their moments. I got to hear her husband as he called to let me know, "she walked- it just hit me she could have died, but she's walking. I love her so much." Marty is the best. He even helped ME on Thanksgiving, get food out to 40 people!

There was a time in the rehab center when I wanted to strangle doctors. They started to talk to her as if she was a child. The woman is in her 30's and lived a bigger, richer life than most of the staff there. She was in great pain, and needed assistance after a session of vomiting. A nurse let her stay in that state for hours until her roommate finally called for them to come help her. That was all I needed to hear, and I had to be at the place every day just to know she was getting SOME attention. She doesn't ask anyone for special help, so the idea that she was in tears or needing some one to listen just burned me up.

At one point, I was in the Patient Advocate's office, demanding that she be heard, and at least told what she was to expect of her care. No one was giving her answers. They kept putting a later date for her release. Had she been allowed to do therapy as she felt stronger, she could have been out much earlier. I said, point blank, "You need to treat this HUMAN with humanity and dignity, and NOT like an infant who needs coddling." I think that was what finally got through because in just minutes, her doctor was by her side, and not speaking in the condescending tone he had been for days. Her body is small, but her mind is ginormous.

My friend Tanyalee isn't a "dwarf", nor is she a "midget". She's a big heart who happens to live in a small body. I watch her struggle with things other people don't even think twice about, such as getting on stage, or riding in a car, or even going out drinking and having a karaoke night. But she's not going to NOT live her life and that's inspiring. There are days when I can't even get out of bed, and I think "I wish I could be like Tanyalee and just do it anyway." Some days I take that challenge, and other days I simply cannot. I still struggle with self-image, as any woman may, but I think of how absolutely alluring my friend is, and remember that not everyone thinks Cindy Crawford is pretty either. Tanyalee is just a wild red head who is easier to pick out of a crowd, but she is who she is- and better.

Today's questions: Who inspires you? Who helped change your view of yourself? Are there people in your life who are considered different, but are part of your normal world? What do you feel like when others point out the differences?

You Know, It's a Woman Thing

2008-12-17T19:23:00.000-08:00

I can't tell you how many times I've sat in a doctor's office and heard the phrase, 'you know, that's part of being a woman, you know, it's just a woman thing.' How can anyone believe she is being cared for by a medical professional who has THAT prejudged commentary spewing forth? When I was eleven, having dismenorrhea, ammenorhea, and oh, did I mention, IBS? Yes? A whole post worth? Okay, then I won't do that here. But I was going through all of this at the age of 11. I didn't even wear a training bra yet, and I was expected to understand, 'it's a woman thing'. I was given a box of pad, that came with another box of safety pins, and I was told that I would be using these for the rest of my Childbearing Life.

I was 11. How much childbearing did I think I was going to have when I heard that? A LOT of it. I expected that the first time I dated someone I'd have to wear that pad, and expect him to understand that we were going to be parents as soon as the act of a smooch was completed. That's all I understood. Then, when I arrived home from that very same day, to a copy of - Our Bodies, Our Selves. I could hear the choir screaming at me. This was my manual.

I first read the book through, and just felt immersed in the education. There was so much more to know about what this "woman thing" is. There was an easy to read, easy to follow, comprehensive manual on all of this womanhood. For five years, whenever I was unsure as to what was happening in this vessel known as my body, I'd search through those pages. Okay, so it wasn't Dad sitting me down and saying, "The birds are..." but it was better. It was the no-nonsense way to teach me about life and the life cycle.

It was through that book that I learned that the things I had experienced monthly weren't exactly normal. Teens fluctuate in hormone levels constantly, but I was going through weight loss and weight gain. I was going through severe clotting sessions, that weren't part of the normal cycle. I had cramps that lasted two weeks longer than my cycle. Between this and the IBS, mentioned in an earlier post so I won't go into here, I was not a happy teen. My Dad and I got along great. I was a bookworm kid. I even was on the swim team. But when it came down to physical well-being, there wasn't any.

I was never given birth control pills as a teen. I wasn't given anything that regulated any hormones at all. What I did get was Librax and Phazyme. For the cramps I was given Motrin, which was only prescription at the time. There wasn't any change in my diet. From the age of 12 until 15 I was a thin kid, from 15 to 17, I had gone from about 110 pounds to 127 pounds- and had teachers tell me I was "Fat".

When a teen aged girl hears she is fat, and is wearing a size 7 instead of a size 2, she can only think that people will consistently judge her as being less than who she really is. I may have done well in writing. I was good in art. But, when I had to do anything that showed me as a "girly girl" I wilted. The theater company in town asked me to join, and I was never pretty enough to be on the stage- I ended up behind the scenes. The woman in charge said to me, "You're not a small girl, it won't work." Yet, there were girls who were larger than me up there. I was of the belief that I was always going to stay behind the scenes, and was supposed to be hidden from site because I wasn't 'small enough'.

When I went into boot camp, I was off the prescriptions. Suddenly, I was back down to a small size again. Within two months of being off the meds designed to take care of "woman issues" I was looking like a woman, and not a little girl. Yet, when I addressed the dismenorrhea and the amenorrhea with my gynecologist, I was given something I had never taken before- birth control pills. For the first time in seven years, I was regulated by a hormone treatment. My weight only went up by about three pounds and although I still had mood swings, and cramps, I wasn't battling the loss of cycle or the increase of clotting. I wasn't on my knees throwing up anymore. I wasn't anemic on a monthly basis. Finally, I had help.

At no time was I ever given blood tests to determine if I had high estrogen levels. At no time was I given tests for DHEA, testosterone, progesterone, or even cortisol. No one checked my hormone levels at any time. From the time I was 11 until just a very short while ago, I was battling thryoid issues, and pituitary issues. Because I didn't "look" sick, I wasn't treated for the illness I was battling. By the time I started looking sick, it was too late, and my thyroid died.

Today's questions- Did you ever feel your gender impeded your care? How do doctors treat symptoms for your Women Issues? what would you tell a teen about her body?

Even Oprah Needs an Advocate

2008-12-10T18:52:00.000-08:00

Oprah Winfrey announced to the world that her weight issues are the result of Thyroid problems. I can't thank her enough for this. I'm not a spiritual person. I'm not a big fan of the show. I've never been a member of the Oprah-cult, that seems to permeate our society. However, I do understand her influence on millions of people, and her ability to get DOCTORS to listen. Oprah changed the world of beef farmers, introduced the world to Dr. Phil, gave Dr. Oz a reputable career on television, and managed to change lives by handing out millions of dollars in gifts, and donations over the last decades. She's a powerhouse, powerful, and probably, the one source of advice for many television watchers. She brought out the issues of child abuse, foster care, adoption, and she let herself be shown crying, with genuine emotion, while others were creating shows around the temper-tantrums of others.

There is no doubt in my mind that medical professionals will now be inundated with women who are finally going to say, "It's not my fork, it's my thyroid you need to test." The first time I walked into an endocrinologist's office, I was expecting him to take one look at me and say, "Oh, hormone issues, that's my specialty!" There were stories of a doctor in Los Angeles who could spot someone with Cushing's syndrome from across a crowded room. If you look up an endo's studies, you'll see thryoid, pancreas, adrenal gland, and hormones listed. If you talk to an endo, you'll hear, "I don't think you have diabetes." They seem to forget that they have more than one organ to study. Unfortunately, the patient has no say in this, and we are pushed out the door faster than you can say Nutrisystem.

In late 2004, I was given prednisone for a sinus infection. I was given enough prednisone to heal a football team before the Superbowl. The doctor I saw claimed she could tell I was going to be better on it because I had a head tilt. I have no idea, to this day, what that means. According to the Heal Your Sinus manual, prednisone is indeed a great option. I believe the way I was given it, and the amount I was given was far too much. I wasn't given the proper antibiotic. I wasn't given any other options. But, at the time, I wasn't a strong advocate for my health, and blindly did what she told me to do. Within weeks, I was gaining 3-5 pounds every THREE days. That means I was a size five woman when I first saw her, and a size 14 when I was off the dosage, less than two months later. My wedding dress, fitted to me at size 4 was now ten sizes too small, and I was unable to wear it for my wedding the following April.

By the end of 2005, I was desperately trying to find out why I was ballooning in weight, why I was dealing with a face that was now wider than my head, why I was having severe fatigue. I started finding other women going through the same issues- a weird hump on the back of the neck; a libido that is simply gone. I looked up the symptoms, and found Cushing's Syndrome was a result of prednisone use. When I saw my GP, (general practitioner), at the Veteran's Clinic, I asked her to refer me to an endo, as I was sure he would see me and offer me the cure for this immediately. He would test my cortisol, see my symptoms, and voila, presto, I'd be cured.

In the real world, an Endo spends a majority of the time seeing those who have Diabetes. When a woman, under 45, walked into his office, complaining of "weight gain" his eyes started to glaze over. His speech became curt. He looked me in the eye and said, "Sure, put the fork down and you'll be thin again." At the time, I ate only one meal a day... less than 700 calories in total. He scared me into not eating even that. For almost two weeks, I had nothing but tea, soup, and a cracker before bed. After he gave me a 24 hour urine test, I was called back to the office and told, "See I told you, the test says normal, so you're eating too much."

The second time I went with a friend, because I needed the support. She heard him suddenly speaking nice to me, when I asked, "I'm eating less than ever, why am I still gaining weight?" He looked at her, and responded, "Well, you're getting older, it may be perimenopausal. See your gynecologist." I was dismissed, you know, for having "woman issues". Had I been a man in my 60's, perhaps he would have taken more time with me, listened to the symptoms, and prevented what turned into YEARS of weight fluctuations, skin issues, sexual dysfunction, hair and nail damage, and oh did I mention severe fatigue and joint pain?

In 2007, for no apparent reason, I suddenly dropped 40 pounds in less than a month. By Christmas, I was down to a reasonable 130 lbs for my frame. In less than three months that would change, and I was suddenly back up again. No changes in diet, no changes in medication. I was experiencing the fatigue, the pain, the skin issues, and certainly the libido issues. In 2008, I was on a nationally recognized diet, delivered to my door, and never once cheated on it for a full five months. I lost two pounds. Two. I drank a single eight ounce soda, and it all came back. The GP looked at my weight over the last few months and determined that I had some issues again. I hadn't lost these issues, she just realized I had them, after I had voiced this for months. She gave me a thyroid panel and we found that my TSH was almost three times the highest normal number. I had finally been given a diagnosis, of "Probably Thyroiditis". For the last two months, that probability was confirmed as Hashimoto's, and I have a dead thyroid, which has nodules on it. Had the FIRST endo even bothered to offer a sonogram as the GP had, he would have learned this in 2005, saving me years of issues. The nodules had started growing after the prednisone was introduced to my system.

I am now on Synthroid. I have a private practitioner who gave me better blood tests to confirm my issues. The VA sent me to yet one more endo, and I was told NOT to take treatment from my private doctor. She was infuriated that I was seeing her after seeing her co-worker years before. I explained that her co-worker missed symptoms and now I'm in the position of taking a synthetic hormone replacement. She said, "We only care about numbers", and then turned to her computer. When my husband asked, "anything else?" She didn't even turn towards us, and just said, "No I'm done with you." After two hours, I was called and told that I had to take even MORE medication than my private doctor placed me on- after I was berated for taking her advice in the first place.

For those women who are told "eat less", I recommend a couple of websites. WebMD.com is terrific for looking at your general symptoms, and determining at least a general direction for you. Diagnose-me.com will give you VERY specific information, based on your own blood tests, your own family history, and your symptoms. You have a choice of paying for a computerized analysis, a doctor's analysis, or an in-depth analysis. The more information YOU give, the more you will have in return.

Today's questions- What do you think Oprah's issue with Thyroid will do for women seeking medical help? How do you feel when a doctor dismisses your symptoms? What do you think will change for your condition in the future?

Doctors Missed Ankylosing Spondylitis

2008-12-03T18:46:00.000-08:00

When you are researching joint disorders, you often find the words "hypermobility", or "stiffness" or "swelling". You often find, Lupus, Rheumatoid Arthritis, and Carpal Tunnel disease. I was in the United States Navy when my spine started reacting in a way that no one was sure was actually happening- nevermind the number of times it was happening. I was sent to a chiropractor, a rheumatologist, and a general internist and all of them were stumped as to why my back kept reacting the way it did. They were even more confused as to why I would have sudden attacks of stiffness and pain when I was sleeping, or just waking up for a 0400 watch, (4:00 A.M for us civilians). All I ever did know was that while my doctors knew I was in pain, the rest of the crew thought I was nuts.

Since I already had a history of Ehlers-Danlos, and it was determined to be 'benign'- not going to kill me- no one really thought anything of the dislocating lumbar joints. I was sent for body scans to determine if I had any degenerative arthritis, or even bone spurs. Body scans are long, drawn out medical procedures involving the injection of a radioactive isotope and a lot of staying still in a very cold room. This was pre-MRI, and very similar. A machine spins slowly around you taking pictures of the fluid going through the muscles and veins. It's pretty cool to see, but I have no idea if they're even used anymore with the advances in this field.

The attacks progressively got worse the more in shape I became. I would run, lift weights, and eat a fairly fruit and veggie filled diet. At that time, I wasn't really a junk food eater, and had fast food once a week when I would make way to the local Burger King for a Sunday Whopper Jr. and read my paper.

Around this same time, I noticed that I needed to wear sunglasses a lot more than I had in the past. I would go entire summers without eyeware, and looked at sun shades as a fashion item, rather than a tool for vision. Now I needed wrap-arounds just to get through a regular day. My eyes started to get conjunctivitis a lot when I was in my early teens. But, this was different. This was just a searing pain that happened only when daylight appeared. I used to joke with my then-boyfriend that my eyes were transplanted from a vampire.

One of my doctors noted that my right hip was a full inch higher than the other. He said that the scoliosis my Hyde Park doctor found a few years earlier wasn't profound, but it certainly had changed direction since I had my first scans. The letter "S" was taller and thinner, but the right hip was somewhat displaced.

The diagnosis would never have happened had a nurse not casually mentioned just a couple of years back- "Well, you have all the signs except for the light issues- your eyes seem fine." She didn't know about the glasses that are glued to my purse at all times in case I'm near a window, or getting the mail. She went bug-eyed when she caught a peek at the six pairs of glasses I had sitting in my purse in case of different light situations. She was the first person who had ever mentioned this disorder to me, and it was something she ran for the Merck Manual to explain.

"My best friend and her mother have this. I bet you do, too. You need to let the doctor know about your eyes!" The doctor didn't want to hear about it, though. In fact, he said, "It's obvious my nurse isn't a doctor, isn't it?" Well, no, it wasn't clear to me that this medical professional who actually listened to me was unskilled in medicine in any way. In fact, she is now a doctor, practicing in San Francisco, specializing in illnesses of the aged. But, I digress.

The pain I feel in my back is best described as a volt of lightening, pinpricked into the center of my spine, leaving hours of ache afterwards. Some days it would shoot all the way to the base of my head. Other days I would have a searing feeling, as if someone took a pizza cutter and was jamming it in between each vertebra. There would be times when sitting up was nearly impossible. Yet, there I was in the armed services, and there wasn't any room, time, or patience for undiagnosed back pain. I was given a number of trial medications, including Celebrex, to see if it would help. Robaxin gave me the most relief, and that was a clue but not a cure.

The guys on the ship had absolutely no empathy. As far as they were concerned, women didn't belong in their Navy anyhow, so having one more "whining" was just another reason for them to complain. Here was someone who always worked at least three fulltime jobs, or two jobs and school, and had been athletic, and now she was curled up in a ball in the bunk. Whatever was causing this, the work I was doing was apparently making it worse. After nearly four years, almost a full term in the service, I was given a medical honorable discharge.

The DD-214, which is the discharge papers all service members receive after ending term, stated I had a Service Aggravated Injury. The doctors were only sure about Ehlers-Danlos and wrote that into the box. My doctors were stumped as to what was causing the constant back pain, but they were sure with all their tests, that it was a "real issue", and wrote that into the box, too. I guess some people have "vague or imagined" issues, but I didn't know that at the time. I brought this paper with me to all of my future doctor appointments for the first two years out because I wasn't sure what to tell them about that pain.

Six months ago, another doctor casually mentioned, "Oh I see by your DD-214, you have Ankylosing Spondylitis. That is often missed." This wasn't on my paperwork, and my paperwork had been long filed by both me and the Veterans Administrative Hospital. This doctor had read my history from over 22 years ago. He was an intern, subbing for my regular doctor, very young, and very interested in why someone under 50 was in his office. He said he had heard I was a Hypermobile patient, and wanted to see what had been done for me in the past. And, he said, it wasn't uncommon for those who have Ehlers-Danlos Hypermobility Disorder to also show signs of AS, as the connective tissues are greatly affected by both.

Today's Questions- What was the "a-ha" moment for your doctors? When did you find out what was REALLY the issue, and when did your doctors discover it? Do you think that younger, eager, medical professionals are better able to comprehend symptoms than more experienced ones?

Polycystic- but Not PCOD Enough

2008-12-02T21:52:00.000-08:00

It's a strange thing when radiologists get hold of you. You have to do prep work. For some procedures it involves wolfing down barium shakes, or during the procedures getting that stuff in the other end. You may have to drink a gallon of water prior to being 'observed'. You may need to take off underwear, stand against a board and flatten your breast into the pizza dough shape you'd see at Domino's. Or you might have to dislocate the joints that pop out- just to see if they're as twisted on the inside as they are on the outside. Prep work is important for those charts, x-rays, MRI's, CAT Scans, and sonograms. If you do the prep work incorrectly, the results may be skewed.

For several years, my doctors were convinced the dismenorrhea I experienced was due to age. Teens always have weird periods. Then they were convinced it was due to birth control options- and for years I was put on pills designed to regulate that monthly destruction. In my later twenties, a doctor looked me straight in the crotch and said, "You have Polycystic Ovarian Syndrome. I'm going to fix this." She was eager to solve the issues that plagued me for a majority of my life, and she would be hardcore and House MD-like about it. But first, she had to send me to a radiologist.

It was a fairly no-nonsense procedure. I walked in to the office, drank about 6 glasses of water, and had some young lady who was at UCLA Medical School wipe a wand around my abdomen. I looked up at the screen and could see what looked like the Scrubbing Bubbles in the advertisements. She laughed at me and said, "Oh, they always look like that in people your age." But she said that the radiologist was the one who had to tell me what was going on.

I never heard from him. The doctor did. She called me the second she heard. "I have news. You DO have PCOD, but it's a bit small. I still think this is the problem." At the time, I was experiencing great bouts of depression, fatigue, and horrible cramping. What was known for certain was that one of the fallopian tubes appeared rather shriveled and the ovary was more like a sprig of pansies than any golf ball sized object that you see in text books. It was a broken box, if you will. The likelihood that I would ever conceive was reduced substantially with only one part functioning. From that moment on, I convinced myself, if I would ever want a child, I would adopt.

Flash forward to eight years ago. It's been about ten years since the last big sonogram, and revelation that I was a barren wasteland of womb-anity. I had to switch birth control pills every few months because somehow my body adjusted fairly quickly and went right back to its sneaky little plan to make monthly errands torturous and humiliating. My great doc in Hayward said she wondered if there wasn't anything more to the PCOD diagnosis that was mentioned in passing a few months before. So, I again was sent on to the scanners.

This time the little martians had settled in where the bubbles once were. I had "cysts" but didn't seem polycystic. If the word implies multiple cysts, then it would seem I WAS polycystic- however...the official diagnosis placed these little weird shapes in a specific location, and mine were appearing in other locations. Just a river of bumpy-lumpy-weird-little-white-spots on the tubes and ovaries. None appeared to be in the spot where SHE thought PCOD patients had them. Beats me. I thought those were pretty much the organs of choice.

Two years ago, I had one more doctor try to determine why I was having weird monthly cycles, weight gain, skin issues, swelling in my ankles, and oh yes- cramps that would blind forty-four ace pilots in a single twinge. I met with one more young medical student who was eager to laugh at the little scubbing-martian-bubble-head thingies. This time, she said, "Legally, I can't tell you what this says, but it appears to be PCOD, as your doctor things. And did you know you have both ovaries completely wiggled up like prunes? You must have awful periods." She's going to be a good doctor, I think.

In 2005 I weighed 123 in January, and 152 when I got married in April of that very same year. Thirty pounds appeared in a matter of three months, and no one was sure why. The only thing the doctors seemed to be convinced of- "Oh, yes, you have several cysts, but it's certainly not as many as anyone with PCOD would have. It must be something else causing this." And, "It's not Cushing's", or "It's not your thyroid." Somehow my body was doing all the things that these issues would make happen- yet none of this was related to any SYMPTOMS because the TESTS weren't showing up with the correct ranges to be diagnosed that way. It would take several more years for the numbers to catch up.

There is a serious flaw with a medical system that is so afraid of malpractice issues that offering possible hope is out of the question. Yet, this is exactly why doctors are telling you and me that they cannot find answers. It's a complete stab into the "do no harm" oath. Yet, so many of us are looking, feeling, and becoming ill and progressing in our illnesses because numbers are far more important than individual experiences. The fact is, I do have PCOD, and it's not as severe as other cases seen. The tests have shown progressive, continual changes that have been the result of a tentative approach.

Today's questions- What do you believe doctors are telling you that isn't the full story? What do you feel like when you are told you are PROBABLY one diagnosis, but you show signs of another diagnosis all-together? What can we do to educate these professionals regarding our symptoms, rather than our numbers?

To Wheelchair or Not to Wheelchair

2008-11-22T11:39:00.000-08:00

The chair was a difficult decision. As a child, I was a horseback fanatic, gymnast, and even had lettered in Swimming in high school. Nothing made me happier than being outside and doing something- whether it be climbing mountains, or swimming in a pond, or ice skating in 20 degree Boston weather. The last time I rode a horse was when I was 38, in Northern California, on the beach watching a sunset. It was the best ride of my life, barn-rat horse or not. The following weeks I dislocated a patella so badly that I was in a brace. It would the first of many times thereafter.

The doctor I had at the time said, "you may feel better if you used a cane, because I think you're probably heading towards a wheelchair". For several months I was "dropping" as I walked. Dropping is the term that is used when you are upright one moment and suddenly have no legs under you- you literally drop to the ground without any warning. My legs just wouldn't play nice with the rest of me. One of my co-workers laughed at me and asked if I drank anything at lunch. I wasn't laughing. I knew it was time for that cane, and it wouldn't be too long before that wheelchair. Then, possibly drinking and driving, in a safe sense of the phrase.

I moved to a different climate, to the desert from the Bay Area, hoping this would put off the inevitable. The cane and I were inseparable. My job and I were not. The work I did telecommuting for a dot-com was often interrupted by medical appointments, and when they opted to move the home base to India, I was let go. This was also the insurance that was used to keep those doctors working. With six to ten appointments a month at a variety of medical specialists, I was learning that my body and I were incompatible with things other than that cane- I started losing use of my hands, and I would drop far more often than I would admit.

It was also when I started to lose a lot of weight without any apparent effort or reason. I was slightly above my smallest size due to medication. But within a few weeks, I was down below the weight I maintained back in graduate school, when my diet consisted of whatever the happy hour fare was between my many jobs. I started to look like the way I always thought I would look after working out 30 hours a week. The problem of course, I hadn't ever walked farther than the bedroom to the kitchen.

Every few weeks I would meet a friend for lunch at a local Mexican restaurant. I became friends with a waiter- a very gay, very sweet, very funny fellow who watched the weight changes in me, and the problems I would have walking. For a few weeks, my doctors were telling me to start shopping for a wheelchair. I was getting too weak to walk at all, and my joints swelled so much that even on good days it was too difficult to get anywhere. The waiter, coincidentally named Angel, dropped by my home on a Sunday afternoon with a Hover-round. He had kept it in his closet, after his close dear friend had died, and was waiting to donate it to the right person. It was a moment of unselfishness I will never forget.

Because of his generosity, I felt a bit more human again. Yes, the motorization brought out the person-hood. But, I could at least leave the house for more than an hour at a time, and if I wanted to go anywhere, I could at least have some assistance, and respite. What I didn't expect is that my joints were so damaged that I was going to need full disability- and that's a conversation for another time.

Today's Question- When did you learn you were more ill than you thought? Did you have to have outside assistance? Was there anyone who helped change your condition for the better?

And here is the rest of it.

Physically Ill or Depressed or ...

2008-11-18T18:32:00.000-08:00

There is a physical state called Dysautonomia. For those who have it, you are probably told you have Adrenal Fatigue, Fibromyalgia, or Depression. For those who never heard of the word, Wikipedia states: "Dysautonomia is any disease or malfunction of the autonomic nervous system. This includes postural orthostatic tachycardia syndrome (POTS), vasovagal syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and a number of lesser-known disorders. Other disorders, such as multiple system atrophy (Shy-Drager syndrome) and chronic fatigue syndrome,[ have dysautonomia as one of several system malfunctions." In English, you feel wiped out, you have a hard time moving, and you certainly don't tap dance and do the Lambada in public nor in private. It's a crappy way to feel.

For people with Ehlers-Danlos Syndrome Type III, also known as Joint Hypermobility Disorder, it's part of the reason why pain doesn't seem to disappear even after taking medications. When I first was diagnosed with EDS, I had no idea what would happen to me years from then. I only knew I had a great amount of flexibility, my fingers went wiggly, and I could snap my elbows, knees, ankles and fingers in and out of the socket at will. I also have been an insomniac for as many years, sleeping less than four hours a night at the longest stretch, and that added to the utter feeling of uselessness. When I was treated for depression, I was also subject to aphasia.

Aphasia is the disorder that a lot of seniors get- they can see and think of a word, but they have a problem bringing it to their mouths. I have that reaction every time I'm on anti-depressant medication. My synapses are being twisted around, and they seem to baffle the vocal functions. This could be the proverbial blessing for any of my boyfriends, or my husband, but it's infuriating for me. More about this affliction later, but for now- dealing with Dysautonomia is a problem for many women, especially those of us with joint disorders, including Lupus, Marfan's, and EDS, and those who are diagnosed with Cushing's and Thyroid disorders.

The first signs of autoimmune disorder started to appear around the time I was diagnosed with EDS. I would have long bouts with sinus infections, and I had tested positive for Mono for years from the time I was 15 until I was almost 30. I never "just" had a cold. I would end up with Bronchial Pneumonia. In the late 1970's and early 1980's very little was known about autoimmune disorders except for the work being done to uncover HIV. There was no clear answer as to why the body would attack itself, although women with fertility issues were often told that their bodies were attacking sperm. It made sense that our bodies would attack an outside source, but doctors didn't understand that our bodies would attack our own organs.

Those who suffer with Crohn's Disease are more than aware of that feeling. Their digestive tracts are in conflict, with their own bodies, and the pain is unbearable for many. For those who are diagnosed with Multiple Sclerosis, or Scleroderma, the reality is apparent to anyone around them- bodies attack themselves. But, for those with hidden illnesses, such as EDS, the obvious dysautonomia isn't easily presented. Doctors misread the signs of extended joint pain and collagen issues as a form of depression. As a result, misdiagnoses are common.

Depression is an all encompassing illness. It's not a "fake" illness. It is a serious, possibly fatal state of mind that can occur in anyone. Those who are deeply depressed don't understand the world outside of their cloud of pain. There is always a negative response to any positive comment. There is a self-deprecation that is far deeper than the local comic's observational chuckle. It is a weed of deep rooted horror that can be a lifelong struggle for some. The more depressed someone is the less likely he will eat well, exercise, bathe, sleep well, or even have healthy relationships. As the physical body gets worn down by bad nutrition, lack of hygiene, lack of sleep, and lack of human contact it starts to break down in others ways. Sometimes that means joint pains and aches. Sometimes that means migraines and constant illness. Depression does cause physical symptoms.

For a doctor to separate Depression from Dysautonomia from Fibromyalgia from Adrenal Fatigue, the medical professional MUST pay attention to the symptoms of the patient. It's not a matter of checklists, and not a matter of blood tests alone. It is an understanding of the person who is presenting the symptoms. This is the primary reason why most who are undergoing physical issues are misdiagnosed. Doctors do not have the time as long as they're scheduled through Managed Care, and they won't make time as long as they are funded by the number of people that can be seen in a day.

A patient is almost expected to spend years going through a variety of anti-depression medications without relief.

For those who need the help there are resources:
Depression and Bipolar Support
American Pain Foundation
The National Dysautonomia Foundation
Ehlers-Danlos Foundation
Adrenal Fatigue Organization
Fibromyalgia

Today's Questions- Did you have doctors tell you physical symptoms were Depression? Did you feel depressed and were dismissed? Do you find it hard to keep the same doctors long enough to have them know you as a person?

"It's probably nothing but..."

2008-11-16T19:58:00.000-08:00

The first time I heard "It's probably nothing but..." I was fifteen years old. I was at the Children's Hospital in Boston, and a doctor was giving me my first Gynecological exam. She said to me, "I know you have extensive periods, and it's probably nothing, but we want to test your estrogen levels." I had one test done, but because I wasn't a regular patient of this doctor, she followed up by telling me, "I'll send your results to your regular doctor", and I never heard about this again.

The second time I heard this, I was sitting in an emergency room in Valencia, California. My boyfriend, at the time, found me passed out in the bathroom of my dorm, and in a sweaty lump. I had a swollen tongue, my face was sunken in, and my fever spiked at 104 degrees. There were lesions in my mouth, and it appeared as if I was infected from some sort of spider bite, or a severe case of tonsillitis. I was twenty-five years old, and I had to get my tonsils out. But, the doctors there took a test on the infection with the words, "It's probably nothing but..."

My blood tests were showing positive for cancer cells, but they didn't know exactly where this was, and because I was due for surgery in a couple of weeks, I wasn't going to learn the problem until after I had recovered from the fever, and surgery was completed. The doctor wasn't sure I was actually ill with cancer, or if the tests were misleading them. They did know I had a history of tonsil issues that started when I was about four years old. They did know that I had so many infections the tonsils were pocketed and scarred. They did know there was now a history of massive infection likely caused because the tonsils stopped working as a filter for bacteria.

It was my second year of graduate school. The jobs I had included mailroom clerk, resident assistant, security guard and costumed animal at the nearby Magic Mountain, and I had a full load of classes on top of this. You'll start to note that from the age of 14, until I was 39 years old, I never worked less than two jobs. It wasn't a matter of keeping busy- it was me, being on my own, trying to survive the best way I could. From the time I was 18, until now, I've also done a stand-up show that has gotten me through some pretty rough stuff. If you can't laugh, you will cry, and I didn't want to buy kleenex in my free time. I never HAD free time!

My boyfriend drove me into the surgery, and we let my family know how I was doing. The operation was supposed to take 45 minutes, but I was there for almost three hours. It turns out that the tumor they were going to hunt for in the weeks ahead was part of the problem. The surgeon said, "Oh yes, it's probably nothing, but we took about a fistful sized mass from just below your tonsils that was resting above your pharynx." While I was healing, I no longer had the tumor, but during the post surgical events, my boyfriend went back to his ex.

There was a lot of that going on when I was in my twenties. I used to think that I was used to sort out whatever issues the guys had with whomever they dated before me because in 18 cases, they wed the ex. Yes. I was the cure for breaking up with someone. Unfortunately, the tumor that was removed didn't seem to solve that issue, and during one of my bed rest days at the dorm, I was told I was being left for the ex gal pal- whom he decided to talk to while I was in surgery. Nice. Glad to know I was able to help!

During the course of the recovery, I was transferred to a new physician at Cedar's Sinai in Los Angeles. I had to rebuild muscles in my neck, and I had to undergo a form of chemotherapy. As a student, my insurance was limited, so I was under the "testing" program from the UCLA Medical Center. I was given six months of a treatment that I still don't know the exact name of- but it seemed to work just fine. Once a week, I would drive to Los Angeles, and sit in an outpatient cancer center, with an IV in my arm, surrounded by other women and men who were doing the same. Some of us met for tea at Gilda's Club, which was a newly opened support center in Santa Monica.

It was there I met other women who had been told "It's probably nothing but..." Some had breast cancer. Some had lung cancer. One had leukemia. All of them had been told "You're not really sick." Women are often told by doctors, "You're probably just stressed from family", when in fact they are ill. Some of us have "normal" ranges in our blood tests for years before someone finally sees the real issues. There was a woman in the group who had a goiter, and I had never heard of one before.

Her neck was swollen so much that it appeared as if she swallowed a grapefruit whole. The doctors had told her that "It's probably nothing.." and one even dismissed the ever-growing lump as "eating too much". She went to Cedar's after she had an allergic reaction which prevented her from breathing. When the EMT couldn't put in a trach. tube, she was finally given surgery. Unfortunately she was one of the very few who end up with throat cancer as a result of a thyroid tumor, and I watched her decline for several months before she finally had a turn around- and now she's happy, living in Orange County, and raising her five dogs.

The question for this blog- What was your response when the doctor said, "It's probably nothing but..."? Did your Nothing turn out to be something? How do you think doctors should speak to us without scaring us?

Training Us to Fear Pain Medication

2008-11-14T18:12:00.000-08:00

Several years of dislocating bones, primarily the patella in either knee, the left hip, the left shoulder blade, and all fingers except the thumbs causes me a great deal of pain. For years, I'd been afraid to take any pain medications except Acetaminophen or Ibuprofen because I had been drilled that "Pain meds make you an addict". I wouldn't take anything stronger than codeine when I had pneumonia and didn't have any idea what it was like to feel pain-free.

It started with the spine. For those who have undergone slipped discs, back strain, or broken tail bones- I completely empathize with you. During the years in uniform, I was part of the deck crew. This meant I painted a lot of metal, and used power tools to peel paint off the sides of ships. Like everyone, I had sore muscles, and aches. The difference was that I would have subluxations in my spine. This is slightly different from a dislocation. The bones would slide left, right, or forward and back but slip back into position. Although not quite as painful as a dislocation, which leaves the joints and bones out of place for several minutes, or even hours, the sublux happens in moments, and the pain is fairly intense. Unlike dislocations, a subluxation doesn't show up in an X-ray, but the results are similar- strained muscles, pinched nerves, and eventual arthritis.

Doctors offered me Robaxin. This muscle relaxant, generic methocarbamol, did wonders for the strain. It also served to alleviate some of the "female" issues I was having by easing cramping and premenstrual aches. The primary issue with this medication is that joints tended to be eased to the point where more subluxations and dislocations ensued. The secondary issue was the increase in depression that is considered a mild side effect. The issue of pain wasn't resolved, however.

For years, every time anyone offered pain medication, I expected that I would fall under the same issues presented in the film Reefer Madness. Anytime I heard about "morphine" I was told about Viet Nam vets who were still in the hospital trying to recover from their love for the medication. I would hear about parents, grandparents, uncles, cousins, neighbors and "some guy" who lived near "some girl" who was so hooked on this substance that he sold his kids to slavery in some foreign nation that likely doesn't even exist. I was scared into never trying pain medications.

Seventeen years after my spine snapped forward and backward for the first time, a young physician in San Francisco said, "You have a choice- wheelchair or pain meds." I still was afraid that I'd end up in rehab somewhere, and reluctantly tried a week's supply of hydrocodone, also known as Vicadin. For one week, I could stand upright without wincing, and managed to walk across a campus at San Francisco State without stopping. It was bliss. But I still feared any long term use.

Six years after that, I found myself in another doctor's office, with a shoulder flipped about 20 degrees out of the socket. I had waited for a few hours, and it still wasn't going back into place, so she offered to give me a steroid injection, then told me I would probably do well on some pain meds for a little while until it healed. Several weeks later, I was off of the same meds, without experiencing the feeling of critters crawling through my skin, nor did I have night sweats, hallucinations, or sudden cravings for cheese doodles. I was just not in pain for a few weeks, and then all went back to normal- which was mostly aching, and mostly unsure as to what to do about it.

In 2002, I was told by a pain specialist that I was going to have to deal with the issue, as I was in a wheelchair on and off several weeks a season. My fear was unfounded, and years of hurt could have been averted had I not been so trained into believing that women are supposed to be able to handle it all, including the feeling of a bone sliding out of place. I was supposed to quietly deal with what was ailing me, because any other option would mean I'd be a statistic. For the first time in my life, I accepted the assistance of Morphine. In the first three months, I had not only let my wheelchair gather dust, but I was now able to walk for more than a few minutes at a time.

In time I discovered that those of us who are on strong medications are not easy to spot. We don't shake, we don't sweat, we don't sit in corners, alone in the dark staring up and around looking for cops. We simply exist. After such a long time on one prescription, I am learning that I've become almost immune to its effect. When I had surgery a couple of years ago, I was given Dilauted to recover. I remembered what it was like to not feel the ow-factor anymore. I have to change to a new medication soon, as the wheelchair is starting to peek out from its spot in the garage again. But, it's good to know that I finally have these options after being so frightened by the paranoid propoganda that I'd end up on some lonely street corner, selling everything I owned to get these meds.

Today's question- What have you been told to make you fear medications that would help you? Did you ever refuse help because of the stigma surrounding it? Have you been unable to see a pain specialist or was told not to see one?

How Does "Managed Care" Become Mismanaged?

2008-11-12T22:15:00.000-08:00

I have found many people who have issues that are coincidentally, if not painfully, linked to the period in their lives when the local doctors became the "HMO" doctors. Health Management Organizations, Health Maintenance Organization, Harried Murderers Organization. When administration of health became the primary purpose of health care, health CARE seemed to walk as far away from the Hippocratic Oath as vampires from garlic.

My first view of HMO's was when I was still on the base in Little Creek, Virginia. A friend of mine, and wife of a sailor who had been away from her for almost six months, was very, very pregnant. She was almost about to pass an adult. The base was under the Reagan Doctrines, and many of the benefits of being part of the military were shuffled away, so that cash could be diverted to better things. No idea what these better things were, but during the eight years he was in office, many of the Veterans and members of the armed forces were only given bonuses and benefits if they signed up for longer than six years, or re-upped. From 1980 until 1987, many of the people who were using the military for earning money to go to college, for instance, lost much of that benefit. Wives and family members of people on many bases were given the option of using "HMO" care rather than base hospitals.

My friend decided that her child would best be served by a civilian doctor, and she and her husband opted for her to sign into the HMO system offered by the military. Virgina was one of the first states to test out this management system and it was supposed to help streamline medical care, offer stability of services, and even serve to give a person ONE doctor to deal with for her entire life. We all know what has become of this form of medicine. The idea that hospitals could cut costs by cutting care became the modus operandi. At this time in the history, however, there was still the idealism that the doctors would be the leaders in this new form of practice.

She went into a hospital and was shuffled from station to station until she finally met her ob-gyn, approximately four minutes before delivery. Then, a week later, her bill was all of $35 dollars. I thought, "This HMO stuff is GREAT!", and I couldn't wait until I was eligible to sign up for the same. After I was discharged, I had no idea that I qualified for Veterans Hospital benefits for a service aggravated injury. All I knew is that in Boston, I could go and sign up for Harvard Medical care, and that's exactly what I did....only having one story to go by.

The first doctor I saw went through my records from the Naval Hospitals, and saw, "depression", and "ehlers-danlos", and that's all I ended up hearing about for the next few months. One day, he said, "We're testing new medications for people with joint diseases, and you can qualify for the trials." But it wasn't medication for the bones and joints- it was an antidepressant panel. I was given epilepsy medications for the first time.

I was told that if I kept in the "trial" programs, my fees for the HMO would be waived, or reduced by up to 80%. As a student, in an art school, I thought that was a fantastic deal! I could see specialists, and my doctor, and get treated for my illness- for almost three dollars per visit? This HMO program was amazing! What I didn't know was that my care was going to be given over to another doctor, and I was placed under the "mental health" department.

It was here I was tested for sleep issues. I was given exams for epilepsy. I was given liver function tests nearly weekly. I had blood drawn and new medications handed to me every few weeks. For almost three years, I had no idea if I was feeling better, or if I was so medicated, I was sort of feeling okay, for just that moment. I do know that I ended up with mono- that showed up in my blood for seven full years. I do know that I ended up with bronchial issues, including pneumonia, which I was told was a side effect of one of my medications. It took almost four months to recover from this, and it was so drastic I ended up with throat scars for coughing so much.

In my mind, I was being treated by HARVARD MEDICAL, and I knew that was supposed to be the best in the world. I hadn't heard of the Mayo Clinic, and I had no idea what National Institute of Health was. One doctor was convinced I had petit-mal epilepsy because I was so spaced on meds. Another one said I was having too many problems with depression to have epilepsy. The pair of them sent me on a three day exam, that included a 24-hour no-sleep allowed test. Both of them were so intent that each was correct, that I was shuffled back and forth between the two for months. I finally said to the "depression guy", I was tired of talking to him about my life, and I wanted him to taper me off the test meds.

The HMO didn't want that. I was being used to test a valuable product, (I still don't know if I was on Effexor or Wellbutrin, but I am guessing it was one of these because of later similar side effects I experienced on both.) I do know I wasn't part of the "placebo" group because I was shown blood tests that were just scary- high bile content, low enzyme content etc etc etc. Just nothing ever in the "normal" range.

The cycle was broken when I was accepted to graduate school in California, which meant I couldn't be part of this program any longer. I had been given my first mammogram, (at age 23), and was told I was having problems with "dense tissue", that was likely poly-cystic. That was the last set of tests I was given before I started the drive to Los Angeles, and the detox from the medications. By the time I was in my first semester at Cal Arts, I was only on Tegretal and birth control pills. This was a reduction of nearly a dozen different medications.

I thought I was out of HMO care forever, until, in 2002, I was talking to my Veterans Administrator about discharge paper copies, and she asked if I had realized I was supposed to be able to use the VA for their health care from the day I was let go. I had no idea. But, I did know by this time, I was so ill and so broke from paying for private medicine, that the idea of being under this program was a relief. More on this another time...

Today's question- When did you discover the HMO sytems, and did they serve you at any point? What would be a good socialized medicine program, or is that not something that could exist? How do you ensure you have correct care when the doctors are only looking at specific cost cutters?

Is Depression A Symptom?

2008-11-10T17:17:00.000-08:00

Kids in school now are often prescribed medications for Attention Deficit Hyperactivity Disorder. For those who grew up in the 1970's, the drug of choice was Ritalin. When a child was overly interested in books, art, and even, dare I say, schoolwork, it was more likely that she would be considered "withdrawn". But, when a kid has Irritable Bowel Symptom from the age of four, she isn't considered ADHD, nor is she considered withdrawn. She's considered, "unusual". I was unusual for many, many years.

Doctors spent a lot of time testing me for allergies. I was poked with a variety of needles and pins, and given the samples of things like "dog dander" and "horse spit", but I never was asked if there were any issues at home, nor was I asked about my diet. That wasn't important to the diagnosis back then. What they wanted to know is "Why did this kid poop so much?"

It took ten years until a family doctor finally said, "Have you ever been on antidepressants?" I was only 13, and had no idea what he meant. I had heard of Valium as "mother's little helper" because of the Rolling Stones. I had heard of Prozac, because it was on the cover of all the magazines as the breakthrough drug of the century. But, I hadn't really been given any knowledge as to why I was having these terrible panic attacks, followed by hours in the lavatory, that most doctors determined was a direct response to my lactose intolerance.

I also had nasty bouts of bronchial distress that were directly related to stress. It was asthma, but it always seemed to rear up when I was dealing with a parent's anger, or another parent's infidelities. I had asthma attacks and bowel attacks, and I had always wondered if I'd just go through the alphabet until I had Zebra attacks. My release up to this point was to visit with a school nurse who would have me lay my head down on a desk and wait until school was over so I could go home.

There were a lot of reasons for childhood depression. Our family set the trend of being the first in the neighborhood that went through a divorce. We had a pet- that was taken away by a neighbor two days later. We had a very limited income, like many people in our area, and relied on the food that arrived weekly from the government, or from donations. Some days that was a longer wait than others. We had a home that wasn't exactly safe for children, with violent outbursts from one parent. And, one family member decided it was okay to try to have sexual relations with his oldest niece, and that certainly wasn't fun, I assure you. We knew death, we knew life, and we knew what it was like to be outcasts amongst the outcast.

But, like most kids, I coped as best I could by creative outlets. I wrote a lot. By writing, I mean taking those manila paper sheets, folding them up, and stapling them into books that I would share with two or three other girls. I was the school artist, often asked to paint chalk murals on the walls of classrooms. And, I spent a majority of my grade-school years staying by the side of adults. Any adult. It was generally safer than being near other children who, frankly, scared me.

The ultimate events occurred during the days we were paraded in and out of courts as our parents battled to gain our possession. There was no sense of home, and no sense of safety. We were never sure of where we would wake up, and there was a court appointed psychologist sent to chat with us. In my case, she took me to bakeries to get me to talk to her- which leads to the idea that comfort and food go hand in hand. It took almost thirty years to break that cycle.

But, no doctor or psychologist ever brought up the idea that a child could have depression until the day my dad brought me into Dr. Carr's office in Hyde Park. Within months I was on lithium, librax, and was being treated for depression, which although didn't cure the IBS and panic, certainly curtailed it substantially. He did help stop the asthma attacks, and I believe that his ability to listen had everything to do with that. It took seven years of emergency rooms, thousands of allergy shots, and years of school nurse visits, and just two hours of a single doctor's time to discover what the real issues were. He was the first to use the phrase, "irritable bowel", and he was the first to approach my dad with the idea that I was clinically depressed.

Unfortunately, many doctors after him read his diagnosis of "depression" and stopped treating other real symptoms of real diseases because of this. It was as if the title was given to warn other medical professionals, "THIS person has something you don't understand, so please medicate as much as, and as often as possible."

When I first started showing signs of hormonal disorders, the gynecologist I saw read Dr. Carr's reports and determined that it must be something that's simply stress related. It didn't matter to her that my weight was jumping up and down by up to 20 lbs in a single month's time. It didn't matter that I was having a period for nearly 50 days per cycle. That had to be something I was just overplaying because of being so "Depressed". I ended up on even more antidepressants, and even more anti-anxiety medications. When my weight finally leveled off at 118, when I was 20 years old, the doctors stopped listening to me tell them that there were other menstrual issues. I was given birth control pills and told that it would solve everything.

They didn't hear that I was having cramps 12 days prior to any cycle that lasted up to four hours each time, for up to a week. They didn't want to hear that I was spending at least one day a month in bed because I just couldn't move. They didn't hear any of this. They saw "Depressed", and only treated THAT instead of ME.

So the question for this blog: Do you feel as if you are labeled Depressed? Do you feel as though that label has prevented care? Do you find that doctors will prescribe anti-depression medications without really hearing you talk about symptoms once they hear that "D" word?

My Doctor is Killing Me, How About Yours?

2008-11-09T20:28:00.001-08:00

This the beginning of what I hope will be the end of the issues with the doctors I've discovered over the last five years whose primary goal is to ignore symptoms, family history, and actual visual clues- and JUST look at numbers on lab tests. This is the story of anyone who has been taken the advice of "managed care", and who has ever been part of the Veterans Health Care system in the United States. This is the story of me, but it could very well be yours, too.

In 1979, I was diagnosed with Ehlers-Danlos syndrome. I was also diagnosed with Petit-Mal epilepsy, IBS, and major clinical depression. This was a year that would start the spiral of misdiagnoses, unwarranted medical procedures, and numerous tests that could have ALL been averted had one doctor simply listened. I have never been given genetic testing. I have never been given anything other than symptom cover-ups. For the last thirty years, my doctors have been killing me.

Ehlers-Danlos is a connective tissue disorder. My joints are hypermobile, often snapping in and out of sockets, and my skin is very supple, almost baby-like. As I worked in a medical school bookstore, I was leaning on a desk and an orthopedic professor noted this. He said to me, "You are contorted, have you been tested for EDS?" That was probably the worst pick-up line in the history of mankind, but I fell for it anyway, and said "not at all".

Within weeks, I was to be prodded and poked by Harvard Medical School's most prized students who had never actually met anyone who could contort and twist every single limb simultaneously without the training of a Chinese Acrobatic Academy. I was stretched, poked, pulled and puttied. I felt like a Cape Cod taffy pull, without the fruit flavoring. During the entire circus, I never once was given a copper test, nor any genetic testing, which would have verified the diagnosis. There are a number of illnesses which produce hypermobility. According to Harvard Medical, I was the poster child of the disorder, and certainly ended up in magazines and classroom discussions for several years.

Nothing really came of this until 1984, when I was in the United States Navy. My spine had several subluxations, and I had slipped several discs over a short period of time. Within a few months, I was once again part of the Newport News Medical Center at the Naval Base, providing a freak show, and pointing out the ways I could wrap my own fingers around my hands, and bend over so far that my shoulders could touch the floor.

This time it wasn't the harmless twisting of a trick monkey performing for the doctors. This time, I had some serious pain attached to the dislocations. I was given Body Scans, which included radioactive isotopes and the impossible task of staying perfectly still for several hours as a machine ran up and down me. My relatively small frame was becoming increasingly hard to live with- the patellas were sliding, and the spine was harder to control. I became a victim of the exact demonstrations designed to teach medical professionals how to handle people in my condition.

In 1986, I was given an honorable discharge from the USN due to medical issues. I was the test subject for Robaxin, Valium, and even a chiropractic class, but nothing was helping. For several months as I awaited discharge, I was so medicated, I'd have violent mood swings, and bouts of depression that were greater than I had experienced before. Before the medications, the depression was something I had known about, but the mood swings never happened before. I was always relatively laid back, and fairly chilled out, if not happy. The idea that I could be grouchy just seemed too weird. Yet, there I was having emotional fits of rage, for no reason other than not being able to handle all the medications.

I had no idea this was the beginning of the life that would be mine for the next three decades. This was the beginning of it all. What about your story? When did it start? Who were the first people to discover you as a tester for medications? Treatments? Mistreatments? For the next few blogs, we'll walk through the stories. We'll discover why our doctors are trying to kill us rather than find a cure for what really is going on....maybe we'll find good doctors.