Saturday, November 22, 2008

To Wheelchair or Not to Wheelchair

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

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

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

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

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

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

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

And here is the rest of it.

Tuesday, November 18, 2008

Physically Ill or Depressed or ...

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

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

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

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

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

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

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

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

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

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

Sunday, November 16, 2008

"It's probably nothing but..."

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

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

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

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

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

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

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

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

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

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

Friday, November 14, 2008

Training Us to Fear Pain Medication

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

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

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

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

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

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

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

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

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

Wednesday, November 12, 2008

How Does "Managed Care" Become Mismanaged?

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

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

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

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

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

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

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

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

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

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

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

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

Monday, November 10, 2008

Is Depression A Symptom?

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, November 9, 2008

My Doctor is Killing Me, How About Yours?

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

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

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

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

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

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

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

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