Monday, 07 September 2009

• I'm not Terminal. Worse...I'm Chronic.

  I have an extensive history with doctors. At one point I believe I had 11, all to myself. There's been the standard pediatrician. The orthodontist. The eye doctor. And then there were the nutritionists, the growth doctors, the spine specialists, the neurologists, the pain specialists, the neuro-surgeon, the orthopedic surgeon. It was a whole fleet of white coated bureaucrats, poking and prodding and charting me since birth.

  
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  I was born fucked up. Smaller than normal, the umbilical cord choking me, purple and not breathing. Then there was the hip displacement. I was put in a body brace when I was 5 months old, 6 months later it was taken off. I was taken to the hospital once a week, for 6 months, for an x-ray and so they could shove my little baby hip back into its socket again and again. That's 24 x-rays before I was even a year old.

  Then when I was 3, I didn't grow or gain weight for a year. When all the other toddlers were hitting their mega growth spurts, I was the same. So again it was back to the hospital for a series of blood tests, physicals and oh..more x-rays. 2 1/2 hours, 3 IVs and 21 shots later it was determined I had Growth Hormone Deficiency. I was charted from then on, carefully measured and weighed every other month, getting hauled back to the hospital everytime I fell off the charts again.

  At 7 I was diagnosed with Scoliosis, which brought about questions. How would it affect my height now? Was it because of the hip? How fast would it progess since I never grew?

  But by 11 my legs started randomly collapsing, and suddenly I couldn't run anymore. I was a girl who spent every recess playing soccer or tag with the boys. Running on the winning relay team in gym. I was fast. I used to be so fast. By 12 it was hard to walk long distances. Gym class became a thing of the past as my body started deteriorating around me. I was ordered not to run. Not to walk for extended periods of time. Not to stress my back. Eventually I had to start using a cane. X-rays became a regular occurence. Blood tests. MRI's.

  When I moved to Ohio at 15, I became fast friends with the various staff at Cleveland Clinic. More tests, more x-rays, more scans. By then my curve was 37 degrees, I was taking painkillers daily and my doctors kept adding medication. Side effects ranged from loss of appetite to trouble sleeping to blacking out every morning when I woke up. School was a daze as I literally spent everyday drugged. Back then they told me that surgery was too dangerous, a high risk of paralyzation or death, that it wasn't worth it. And I was sent home. They told me I wouldn't get worse, my growth plates were fused, I'd be fine.

  I started seeing pain specialists after that. More pills they said. Pills to help me sleep. Pills to help my muscles from swelling. Pills to take the pain away. Chemical injections into my spine. Facet nerve blocks. Botox. Radiation to burn the nerves away. No one asked about my legs. Every doctor. Every specialist, no one gave us answers. They said it was probably my back, just take my painkillers. No diagnosis, no attention. I was brushed off time and time again, as they'd ask my mother to verify my claims, right in front of me. As if a 17 year old would lie about not being able to walk. As if my cane was a fashion accessory.

  At 18, after years of tests and monthly visits anddbeing diagnosed with a string of conditions including severe Anemia, Hypoglycemia, Syringomyelia (when cysts form in the spine), Fibromyalgia, Immune Deficiency and Chronic Insomnia. I was still arguing with the doctors. I knew my body. I could feel things getting worse. Finally, we found a new neurologist, in 20 minutes he found and diagnosed the reason my legs had been deteriorating for years. Something called Tethered Cord, a rare spinal deformity that only occurs in 0.05 to 0.25 of every 1000 births. I was referred to a new orthopedic surgeon who actually listened to me, sending me to have new x-rays and MRIs done. They found my curve had increased to hover at 50 degrees. Something that should have been impossible.

  In January I had neurosurgery to correct the Tethered Cord. Which was botched and didn't heal correctly. Resulting in a hole in my spinal cord that leaked fluid throughout my back and into my brain. It was excruciating pain. I stopped eating. I stopped sleeping. I stopped drinking. I lost 12 pounds. 10 days after being sent home, I was rushed to the ER, then back to the Cleveland Clinic. 3 days after that, they operated again.

  5 weeks ago, I finally, after years of fighting and pushing and begging, had a spinal fusion operation. Where vertebrae in my back are fused together, and metal rods fused along my spine to straighten and keep it in place. I don't know yet what my new curve is, but my surgeon said the results were better than he had hoped for.

  In a way, I feel like I won and lost the war at the same time. I spent years arguing and fighting to be taken seriously. I wasn't some hypochondriac 15 year old. I knew something was wrong and I just wanted to be fixed. 4 years later I finally got what I so desperately wanted. But it came at a price. My back is a patchwork of scars that will never fade. That prompt looks and gasps whenever I wear a bathing suit, or a t-shirt rides up. That guy friends so helpfully point out would be distracting during certain..intimate activities. I received minor brain damage from the fluid leak, that left me with almost constant headaches, and nerve damage in my left lower leg. It also left me unable to return for the second semester of my freshmen year of college.

  It's too soon to tell what damage will be left from the last one. I have nerve damage in my entire back, down my sides and along the tops of my arms. The doctors have told me it should fade, but 'not for a long time'. I'm unable to return to college in the fall, instead trying to get approval to take online courses. I can't lift, bend or twist. I can't pick up my cat. I can't cook myself breakfast. I can barely put on socks by myself. If I want to go for a walk, I have to take my walker with me.

  At 19 I've had more x-rays, MRIs, CATscans and bloodwork than I can remember. More injuries and ER visits than any 'delicate' girl should have. I've been highly medicated since I started highschool, a veritable cocktail of painkillers and muscle relaxers and anti-inflammatories and anti-depressants. School was scheduled around my medication timetable, my need to eat to keep my blood sugar in check. And then there was the fact that I just simply missed more than half of both my Junior and Senior year.

  I always joke that I collect diseases. It seemed that each time I went to the hospital, each test found something new. Some new chronic condition. No cure. No end either. I don't mean to sound cruel, or flippant. But in a way I've always felt that the terminally ill have it easier. They gain more certainty. As tragic as the diagnosis is, eventually their pain will end. Those with chronic conditions  have no such thing. I know I won't live a long and healthy life, but I'm also unable to be given a date to know when the pain will stop. If a person has cancer, they're recognized for it, treated and helped. A person with a chronic condition is thrown some painpills and almost expected to 'suck it up'.
  

  I'm not sure what I'm trying to get across. This may be part rant and part explanation, or documentation of experiences with growing up in hospitals. I just always felt that no one took me seriously. Teachers never understood the conditions on the doctor slips. My friends never understood the hospital visits, or that I was too tired or too sore to come out. "It's not like you're dying" was their often complaint. And my only response could be "Not exactly, no."

  I just wish the general public would understand, that a chronic illness is no less severe, or serious, as a terminal diagnosis. The fact that we're still alive, has no real bearing on the quality of life.

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