It must have been around 1986-87 that my step-mom and mom noticed me "walking on my toes." I remember walking down the sidewalk with my step-mom "teaching" me to walk heel-toe, heel-toe. Fast forward to softball on the Scorpians team. This was the summer of 1988, or maybe 87?. It must have been almost halfway through the season when my mom decided to take me to Iowa City. Oh the first visit. Such joy. If you have ever had an electromyogram (sp?), it's where you get to have little needles put into the very top layer of your skin. Then, they send tiny electrical shocks through your muscles. Now before you go calling DHS, (too late now, by the way), they did have a purpose. Eventhough I screamed like something out of a Frankinstein movie, these electrical currents bouncing through muscle tissue told us about my muscle tone. Why does that matter, you ask? If there is too much reverberation, (I think in a normal muscle, it's 600-1200) we know there is a problem. I think my score was 6,000+ or 60,000--it's funny how things get jumbled in your memory.
It turns out that was not the end of my problems that summer. Getting back to softball. I really could hit that ball like nobody's business. I just wouldn't. I knew I couldn't run. It felt like a strong wind was pushing against my chest. I accidentally hit the ball once, and that was the end of it for me. That's when my mom KNEW there was something wrong. Hence the Iowa City visit. Shortly after my first of many visits, I was scheduled for a biopsy. A full-on going under the knife biopsy. I have to interject that my calf muscles were the ones that worked. That being said, do you know what muscle they cut into? That's right, the calf muscle. Commercial time: does anyone know my fear of IVs? Hate. Them. Knowing that I would have them if I had kids someday. I'm surprised I had kids! Just the thought of a needle staying in you. Eeeew.
OK, back to the story. Needless to say, I freaked out. Good thing they put me under right away. That whole summer, I couldn't walk. I would crawl, or try to use crutches, but I wasn't very good at those. After getting the surprising results back that my calf muscles were fine, I was scheduled for another biopsy. This time on my thigh. Duh. That's where the muscle weakness was. I refused an IV. They sedated me some other way. I remember throwing up twice through the surgery, but that was better than an IV. By the way, I got right up off the table and was walking after this surgery--only a little limp. Gee, I wonder what muscles I was using to walk? Just for my memory's sake, I remember either having my first biopsy in 87, and the second in 88, or both were in 88. Either way, I was diagnosed in the latter part of 1988.
More to come...