Monday, December 29, 2008

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?

Sunday, December 21, 2008

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?

Wednesday, December 17, 2008

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?

Wednesday, December 10, 2008

Even Oprah Needs an Advocate

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

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

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

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

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

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

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

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

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

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

Wednesday, December 3, 2008

Doctors Missed Ankylosing Spondylitis

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, December 2, 2008

Polycystic- but Not PCOD Enough

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

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

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

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

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

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

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

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

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

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

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.