Tuesday, October 2, 2012

Rediscovering Cancer

It seems odd today, after 20 years of having no tumors that there was a night when I heard a doctor tell me I had to have my tonsils out, and then three hours later waking up to hear, "We had a complication, so it took a lot longer than we expected."  The complication turned out to be a tumor the size of my fist, and find out it was probably cancerous. That's hard to take at the age of 26, never mind that I was in the middle of graduate school, and my family lived 3000 miles away. I didn't want to deal with anything that involved hours of hospital time, or worse, death.

Chemotherapy was something I couldn't have imagined. In my head, it meant sitting under a microwave or an x-ray machine, and having some weird probe stuck in my head or something. I don't know what I expect to have happened. But what it was-  and still is-  having a seat in a comfy chair, surrounded by several other people doing the same. Some knitted. Some watched the television. We all had IV's, some inserted in catheters placed directly in their chests or upper arms. I had a "strong vein" because I was so new to it, so I had it in my wrist. Ugh. Not pretty. Painful? Yep. But the seven or eight of us in the big Chemo-suite, just did our own thing. We'd get an x-ray in the area affected, then before or after, under go the IV cocktail.

In my case, the liquid wasn't as thick. I was still 'getting tested' which apparently meant I was on a lower dose of the medications. By the fourth treatment, I could see the liquid went from a drop to a resounding plop into the tubing, as it was much thicker, and by then I did get a shunt in my chest. I've had this done twice in my life. The first time, the sight of warm blood trickling in beat of the heart was unnerving. The second time, years later, it was not easy to see, but feeling the warmth of the liquid was equally unnerving. The scar left isn't cool though. It looks more like a chicken pox mark.

When all of the tests finally were completed, back in the stone age of the 1980's/90's, it was a full 17 weeks of waiting for the results. That meant having the chemotherapy, regardless of the outcome. It meant, having a very toxic cocktail of medications put into my system, regardless of the actual results of cancer or benign. When they finally did arrive, I had completed three months, and was very much weakened by all of it. With the results in the cells inside the core of the tumor were shown to be cancerous, but the outer cells seemed to have been healthy cells that swallowed up the bad ones. If people have cancer, it generally works that the cancer cells start to take over cells and blood supplies, thereby killing the animal, in my case, human. But, again, in my case the good cells were slapping the bad cells around for some time, and thus ended my cancer scare. 

A few tests every few months, then years, showed that I wasn't getting anything else growing into my pharynx. It's now officially 20 years since the last treatment. I'm considered a "cancer survivor" even though I technically only had a small lump of evil. So why is this blog called REDISCOVERING cancer? Treatment for the disease has greatly improved thanks to the work of places such as the Dana Farber Institute in Boston. My aunt Jeannie had cancer of her lungs, and didn't discovery it until she was in stage 4, (major, malignancy), and somehow she kept her spirits up, and joyfully went bald from x-rays. Almost two years later, she finally succumbed to the illness, as the cells strangled her lungs to take her last breath. 

It was because of her illness that I worked with The Jimmy Fund, a charity of the Dana Farber Institute, that brings money into the organization for treatment, and studies to eradicate cancer. I ran a show called Comed-o-Therapy, featuring some of Boston's funniest people, that I was happy to emcee, inside the Comedy Connection at Fanueil Hall. . This year, I was asked to present a workshop of laughter through cancer, which I'm gladly doing.  

What I've rediscovered, through the loss of my aunt, and through my own experiences is that cancer can be controlled, and in some cases completely conquered. It is said that we're all genetically embedded with cells that don't do what they should. But when you're a patient, what cells do isn't what is important- it's what WE do when we are handling their eradication that makes the difference. Medically, people who laugh tend to be healthier than those who have little to no humor in their lives. I don't have the capacity, nor education to work on removing cancer from the planet, but what I do have is a sense of humor. As I write out lines that made me chuckle during my own trials, I hope that I can teach others how to survive their illness by rediscovering the silly within. Silliness is greatly overlooked, and should be part of our daily ritual, just as much as grooming, and tasks. I'm looking forward to making people laugh again, but more so, I'm looking forward to teaching a workshop that allows others to find the silly in the insanity that is cancer.

Sunday, July 15, 2012

Secret Discovered at 48

Boston Comedy Connection's Comed-o-Therapy
..and Pretty close to now.
My lifelong motto is "Can't means Won't Try". A few years back doctors, in all their limited wisdom, started me on a decade long struggle within myself. By no means do I think I'm anything other than average in the looks department, but my one pride was staying a size 5 for almost 20 years.

I did so by eating one meal a day, having tea when I had the hungries, and maybe some toast. It wasn't my way to have breakfast- feeling ill if I did. But hypoglycemia was a constant companion. For the first 20 years it was colitis that determined all of my social habits, and often tore me away from the life of a regular kid. I only gained weight when I was put on depression medication- when really, I was probably just malnourished, and needed to get better sleep habits. The meds became my new "colitis", leaving me completely evaporated emotionally, and unable to see life through clear eyes.

I shook off a course of Wellbutrin in the '90's, which also left me quite cranky, as well as anxious. Being thin again, after a few months of pudge made me happier than the meds ever did. Nearly 10 years ago, I finally met THE ONE. He met me when I was having a bad time with my genetic illness- and in a wheelchair. He met me when I was leaving an OK, but not great relationship, which was, itself, a rebound from a bad marriage. All of my baggage, and he was just himself at all times, never apologizing for having an opinion, and one of the opinions was- and still is- that he loves me whether I like it or not.

He watched me battling prednisone, Hashmoto's Thyroidosis, Trigeminal Neuropathy, Ehlers-Danlos, and as a chaser, Myasthenia Gravis. The Prednisone was supposed to help with joint disorders and chronic sinus issues. Instead it made me much sicker, and before I was ever on it, I never had any of the autoimmunity issues. And, my husband has been my rock when it came to a diet plan, Nutrisystem, and the reasons I went for it.

But today I came to a realization. Yes, I do want to be healthier. Yes, I do want my body to be as good as it can be with muscles that work, and I want to feel that pain that doesn't have to break me day in and day out. I like that I'm eating healthier, and I really like that I'm doing "wiggles" every day. My health is not as bad as it had been in the past. It's easier for me to do things, without feeling like I need to sleep the day away afterwards. Nutrisystem didn't help me lose all the weight I wanted to lose- I've always seemed to have the up and down from medications. But, it did show me that I had more options than fast food, and better ways to take care of the "hungries".

Today, my realization is simply this- I can be a curvy girl AND be happy about it. I already have the man of my dreams, and I live in a wonderful home, surrounded by so much that is what I love most about life. I had a good run of years being a petite person, and now I'm not so petite. It shouldn't mean I'm less than human, no matter how many times I feel that way. It should mean that I am a woman, who is curvacious, and I don't need to apologize for that. I am eating well, and soon I will have a regular sleeping cycle. I dance- aka "wiggle"- each day for as long as my bones allow. I have support of friends here, friends online, and more so, my DH, who is my rock, in this hard place.

Yes, I expect to stay on the program until I can at least lose all I TRY to lose. There's no "can't" for me. Some things are hard, yep, but most things are just what life offers us, and I am not better or worse than anyone else. I'm great being curvy. It's my right as a woman, and for once, in my life, it's being embraced instead of being a cause of embarrassment.

Sunday, March 25, 2012

How to Lose Weight When A Doctor is WRONG

Most of my frustration over the last few years in the medical profession has been in the absolute arrogance and ignorance these professionals have regarding weight, specifically due to medication side effects. In a majority of my prescribed meds, the side effects state, clearly and within the first three or four mentioned "weight gain has been reported".

The ignorance is not because the doctors don't know what is in the medications. The error is that as humans, it's just so difficult to consider that a miniscule number of GRAINS that make up a single pill, capsule, or liquid, can have such a long lasting and drastic affect on the body. This is the same ignorance that creates first time illegal drug users to overestimate their abilities and die. It's the same ignorance that leads people who don't use condoms to assume that they will not have an issue with pregnancy or STDs. It's why people don't understand that a single dose of Tylenol could shut down their pet's organs. And, it's the exact same logic tht I've been fighting furiously against when speaking with my medical professions regarding my six year fight with weight gain that isn't "just a few pounds" as they each all stated would be the maximum I'd have to endure. For every single medication I've been prescribed, I've gained an average of 19 lbs. At the start of my attempt to find a cure of a way to manage my conditions, I weighed no more than 119 lbs.  At the maximum, I was a full human sie larger, at 207. In fact, I weighed more than my own husband.

I was given prednisone, a full four years after recovering from the last dosage, -- a full FOUR years after getting it out of my system long enough so I could finally lose the 21 lbs I had suddenly grown that first 12 days from taking it-, I was able to lose weight and get down to 124lbs. That was five years ago. That same doctor said, just before I was to have sinus surgery, that I would have to take it again for a full week, at a high dosage. The dosage was twice that I had previously been given. In less than a week, I was up 30 lbs.  Last year, I had a severe sinus infection, and after begging my GP to NEVER give me that steroid again, I had no other option. She only gave me enough to reduce the inflammation in my head that was causing migraines, and that was for three days. It wasn't until 13 months later that I could even see that the scale wasn't still creeping upward.

Arrogance comes in many forms. The most caustic is when a medical professional- a nurse, a GP, and even a desk billing assistant who wasn't that thin to begin with, say, "You know, you have to be eating more than you think you are." NEVER in my wildest days would I ever comment on another person's size. Why? How am I to know what that person did to gain? Maybe it's a tumor of the pituitary. Maybe it was cellulitis. Maybe someone has severe depression. Or maybe they have taken a single dose of Gabapentin, and had edema as a reaction. NO one has the answer to what causes ALL of our weight gain. Food isn't it, and to assume it is couldn't be anymore arrogant or selfish. Unless you're living my life, you can't have my answers, nor can I have yours. BUT we can educate others to how wrong they are or can be.

Since the first week of February, I have been on a pre-packaged food weight control service. I won't say their name, but it rhymes with Sutra Nystem. I am not learning anything new on the program. I haven't really changed my caloric intake all that much. In fact, I'm eating at least one full meal more a day, and about 300 calories more than I have daily for the last six years. This exact program didn't work for me before- five months on it and I lost only 6 pounds in total. But this year, I had far fewer medications to contend with, and only three claim to offer weight gain as a side effect. Another difference is that my mobillity has improved thanks to mild weather, and I'm able to do a little more exercising. Secondary, I am drinking about three more glasses of water a day.

The exercises that I'm able to do aren't huge. I can move my arms fairly easily, as long as my shoulders don't dislocate. If I stand up too long, my tailbone, T3, and L3 all sublux, and the pain becomes unbearable. The left hip, that would ocassionaly slide out of the socket now is a permanent issue, both with bone spurs, and a hairline crack. My palms now dislocate several small bones. Pain is a massive part of my day, and that is only getting worse. The mobility improvements are because my general pain management has been better. The Wii is my morning ritual, now. I used the Dance programs, and I discovered ExerBeat. Using low to no impact I am able to move enough to sweat out quite a bit of pounds.

Despite the doctors' assumptions that I'm eating too much- Despite the doctors assumption that my meds only could possibly put on just a few pounds- Despite the increase of food intake- despite ALL of this, I've lost 20lbs in 6 weeks. The logic isn't there, according to the medical staff. I should have gained another 10 lbs. My blood tests don't show a single change. Not one. 

The only answer is that I'm taking less of the meds that have the weight gain as a side effect. Less medication may mean that I'm going to have a longer battle with some of my illnesses, but if I weigh less, I will have fewer issues to begin with. Give me another six weeks, and let's see how many MORE doctors I can annoy.

Tuesday, November 15, 2011

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

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. 

Wednesday, June 22, 2011

I Think She's Gonna Blow!

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.

Friday, June 17, 2011

Flex Spending Or F'd Spending?

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.

Saturday, January 22, 2011

Learning How to Play Thinner

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?

Saturday, January 8, 2011

Psychic Doctors

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?

Monday, September 20, 2010

Where Did She Go? Name That Cootie!

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.

Monday, January 4, 2010

The FAQs About Service Animals

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?

Monday, December 28, 2009

Madness known as TWILIGHT SLEEP

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?

Monday, November 16, 2009

When A Doctor Is Listening...You KNOW

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?

Friday, November 13, 2009

Medicare Scaring Us

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.

Friday, November 6, 2009

Tears and Empathy

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?

Friday, October 16, 2009

Weight Loss Goals and Scams

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?