We might say it began when I was fifteen, ten years ago (2000). I was in high school and finally hitting a major growth spurt that took me out of boys jeans and training bras into woman's size clothing. Unfortunately, that same growth spurt made me grow six or seven inches in three months. Not only did my wardrobe not keep up, but neither did my knees. Knee pain haunted my days, and shadowed my later high school years. I was diagnosed with patellofemoral syndrome, a rather common diagnosis for young women, ordered to wear knee braces, sent to physical therapy, and told that most people "grow out of it." The orthopedist added on pronation of the foot and joint hyperlaxity in my knees and hips. As a result of this pain, I had to rearrange my coursework, take adaptive PE, and miss out on school dances, choir trips to theme parks, and countless outings with friends and family.
I graduated from high school and started attending the local community college (2003). In addition to the knee pain, I began to have the steady companionship of hip pain, which I blamed on the knee problem. Assuming I knew what it was, I never went to the doctor about it and kept struggling through, trying to do it all on my own.
In 2006, I got married to my wonderful husband who knew about the knee condition and the hip pain, but had no idea what we were in for. I stayed at the community college for another year, got a fantastic scholarship, and then transferred to the local university in 2007. The knee and hip pain that had waxed and waned in the years between began to be more and more bothersome. I found myself more and more stiff in the morning and had increased trouble sitting, standing, and walking for any length of time. July 2008, however, brought new challenges. I began having trouble with my back, hands, and other joints. The morning stiffness was dreadful, and I was suddenly discovering a whole host of things that I had done that I could no longer do because of the pain: Make a peanut butter and jelly sandwich. Go grocery shopping. Play the piano. Vacuum. Write with a pen or pencil. I began using a cane. Then two canes.
I went to my GP and was put through tests: poking, bending, blood work... Whatever it was that I did have, it isn't autoimmune, so it's not lupus or rheumatoid arthritis, I wasn't anemic, etc. etc. In short, my blood work was fine. My GP said that he suspected that I had fibromyalgia and sent me to a rheumatologist.
Dozens of x-rays, countless vials of blood, and two hours in an MRI machine later, the rheumatologist suspects that I have "hypermobility" that causes chronic tendonitis in my joints, degenerative disc disease/arthritis in the lumbar region of my spine, and fibromyalgia. I tried pain killer after pain killer, different types of muscle relaxers, and sleeping pills. I got forearm crutches for most of my walking and a rollator (like a walker but less medical looking) for carrying my laptop and textbooks around school. I started getting disability services. I became the subject of service projects with people bringing in meals and cleaning my apartment. I've missed school, had to turn assignments in late, and battled every day that I was in school to make it through one class at a time.
Somehow I've also managed to pinch a nerve in my neck (diagnosed as myofascial pain syndrome). I have sciatica and plantar fasciitis. My diagnosis of "hypermobility" has vaguely expanded into a "connective tissue disorder, not otherwise specified" (CTD-NOS). I use my crutches whenever I leave the house. If I have to go to the grocery store, I use one of their motorized carts; I prefer to order in my groceries or send someone else if at all possible. I get worn out easily, avoid stairs at all costs, and spend most of my time laying on my bed or on the couch. I have had to redefine who I am, and was nearly lost to the darkness in the process. I graduated with my B.A. in Spring 2010 and have since discovered that I cannot find a job that I can do and for which someone is willing to hire me. I long to get my upper degrees, but, many days, the thought of going back to school and doing it all over again nearly brings me to tears. I've been in physical therapy multiple times. I've paid more money for medications and copays than I want to think about. I've been on: Advil, Ambien, Voltaren gel, Tramadol, Mobic, Lidoderm patches, Cymbalta, Tylonol with Codeine, Vicodin, Skelaxin, Savella, Indomethacin, Aleve, Lyrica, and two types of antibiotics. I've had to give up cross stitch and Tetris, among other things.
If you have a clear understanding of what I actually have, will you please fill me in? Because I think six-or-seven-or-eight diagnoses is far to many. OCCAM'S RAZOR, DANG IT! Somehow all of these have to fit under one striped umbrella instead of several small, unstriped ones.
I'm still learning about my new limitations. It seems to me that every time I start to get an idea of what I'm "up against," something new happens and I have to reevaluate all over again what I can and cannot do. I often feel way more "crippled" then "extraordinary." But this is my life. This is the one I have been given. And I either have to find some way to survive, or give up. And giving up is too hard (another post for another day), so I'm going to have to survive somehow. And while I'm "surviving," I might as well be extraordinary.
...but I really wish I had a diagnosis.
P.S. My spell check cannot handle all these medical terms. It keeps giving me the red-squiggly-lines of death...
