I try to have a sense of humor about it. Not because I think it’s a joke, but I guess because it almost feel like a joke or a prank. When the prank is over everything will be okay. This is what I tell myself. Is that denial? Maybe I’m just tired of crying. It sucks to feel sorry for myself over and over again, especially when I know how much worse things could be. I’m not dying. This isn’t fatal. 75% to 90% of the time everything is perfectly normal. I am normal. I’m talking and walking like I’m still supermom doing it all, 7 days a week, no problem. But hemidystonia is a bitch. No one really knows what causes it. There is no cure for it and medication is experimental. My neurologist was so stumped about my symptoms he is sending me to another specialist, a movement specialist that deals with movement disorders like dystonia and MS. I didn’t even know there was such a career in the medical field as a movement specialist.
My doctor hopes that there with the movement specialist I can get a more accurate diagnosis, because after MRI tests, x-rays, blood work, nerve tests and so on nothing has come up abnormal. In fact, according to test results I am a perfectly normal and healthy young woman.
In the begin my doctor hinted here and there that it may be in my mind. He asked about my stress levels, if depression was a possibility and so on. With test results coming up normal I even questioned it myself. Is it my mind? But, the symptoms come and go. They don’t stay the same. I can never predict when they will happen or how long they will last. The only thing that stays the same is it always stays on my left side and that despite my healthy life style with exercise, hobbies, diet, good social life, good family and even a counselor to deal with my problems, the symptoms still seem to exist. I have no deep dark secrets or underlying fears I have not dealt with. Finances are rough and yes an ex husband is always a stressor but nothing out of the ordinary.
So, I wait and I live with it, whatever it is. I deal with the spasms, the foot drop, the muscles locking, the random jolts and wiggles of my body and spine as my left side struggles to move with my right and at times the difficulty breathing when my stomach muscles push up on my diaphragm.
I joke about it. I cry about it. I research it. I mope about it. I study and learn about it and sometimes I think I finally have one up on it because I discover something important about it. For example, I know that I can still move as fast as I use to on my normal days… running, biking, martial arts, yoga etc, but sometimes stopping can cause my limbs to get locked, but not always. Sometimes, many times I come out of an exercise perfectly normal. On the bad days I need help moving. Sometimes when my limbs lock I know I can walk backwards. You see it is kind of funny right? My body is challenging me and I am learning how to get around it. I know yoga helps, but not always. I know meditation helps, if my stomach muscles don’t spasms. Stomach spasms are rare. I know rest helps and I know no matter what I keep living. This thing whatever it is will not take me down. The spirit is strong in the one.