Emergency Rooms- The Only Choice?

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

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

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


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

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

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

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

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

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

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

Developing Tolerences for Medications

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

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

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

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

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

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

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

What is Talk and Die Syndrome?

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

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

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

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

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

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

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

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

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

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

Why Xrays?

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


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

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

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

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

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

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

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

Charting Tests, Getting Food Right

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

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

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

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

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

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

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

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

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

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

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

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

Never TOO Much Testing?

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

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

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

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

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

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

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

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

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

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

Doctors Who Research

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

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

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

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

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

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

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

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

Pain and Stress - Sibling Rivalry

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

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

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

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

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

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

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

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

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

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

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

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

Is it Swelling as a Reaction?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Health for the Few, Health for the Masses

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

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

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

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

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

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

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

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

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

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

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

Sometimes Natural Just Ain't So

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

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

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

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

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

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

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

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

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

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

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

Melody Petersen is YOUR Champion

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

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

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

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

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

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

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

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

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

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

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

"You're on the Net too much"

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

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


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

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

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

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

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

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

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

They Say "Live With It"

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

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

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

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

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

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

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

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

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

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

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

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

Being Different Is Being Better

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

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

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


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

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

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

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

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

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

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

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

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

You Know, It's a Woman Thing

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

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

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

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

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

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

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

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

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