I've always loved to dance. It's a great exercise in body awareness, I get to spend time around music, it's a great way to get exercise and I like how I can express myself. I can't do it now, but I still miss it.
February 15, 2003 was a Saturday. I'd been invited to participate in a dance class for blind adults,, which focused on ballroom dancing. There were a lot of different types of dance taught, and the class really allowed for personal growth. I really enjoyed the experience. I don't know which dance caused it, though I suspect it was the polka, which involved going up on your toes and bouncing, (I think that was the polka, but I could be wrong). Anyway, I remember feeling sore after that class, but I don't remember it being bad. Four days later, on a Tuesday, I asked mom if I had a bruise. As far as she could tell, I didn't. The rest of that week was pretty busy. I spent the night at my sister's dorm and went to the mall for a mobility lesson. Friday, I was in severe pain, couldn't tolerate the feel of putting on a sock and had some swelling.
The doctor told me that my foot wasn't broken, prescribed rest, ibuprofen, a few ankle exercises and who knows what else. I iced my foot, rested, tried to do the exercises (though I got hung up on drawing the alphabet since I couldn't remember the print letters), took Ibuprofen when I could and hoped the pain would get better. In short, it did not. Instead, the swelling and pain only increased. I started noticing some of the temperature stuff, but didn't have the language to describe the pain or temp issues. I visited the doctor again and again, was referred to an orthopedist who didn't have any ideas other than to pass me off to physical therapy, orthodics, prescribe another medication which didn't work and made me exhausted and unable to focus and say he'd put me in a cast if I didn't get better. I tried all of these approaches. But as I said, the medication didn't work, in fact, it made me feel horrible. The orthodics hurt me, and were even worse with the swelling. The physical therapy was helpful, to an extent, but we just ran out of ideas.
It took a few months until I found a doctor, who ended up doing my surgeries later, who knew what RSD is and suggested it was a possibility. It took even longer, another few months, to get me into the pain center where I am now treated. There, at the beginning of my junior year, I was diagnosed with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. We started using blocks, and that is what started to put me into a remission. It took the entire school year, but my pain was mostly only in a tendon by the time I went to train with Julio that following summer (July 2004) There, I got lots of exercise, and with the help of a block and careful applications of ice and use of Advil and Tylenol PM, my pain was pretty well controlled.
Throughout my senior year, we tried more injections, more orthodics and more attempts to control the pain. I had some reactions to what we now know was Ibuprofen, and didn't realize that this very important part of my self-management could have killed me. Finally, my surgeon decided that I would be better served by a wait and see approach, for several reasons. She suggested acupuncture as a last-dish treatment to avoid surgery.
Those strategies worked well in high school, but as I learned in July after my senior year, once I was out of remission, those treatments were much less helpful. I remember tripping as I came off of a bus, and I remember a feeling of dread because somehow, I knew that something isn't right. So, in August, I went back to the pain clinic.
I'm desparately trying to avoid the need for a spinal cord stimulator, and so deal with a significant amount of pain every day. Sometimes, it doesn't let up. Occasionally, I get a few good days. But it's always painful. The things this monster does to me are, without question, some of the hardest things to deal with. But I still try to keep hope alive. Even if that means that I let others hope for me.
I take comfort in the knowledge that I can write about RSD. I can share my own story, which I do in this blog, and maybe prevent others from the feeling of isolation, bewilderment while waiting for a diagnosis, fear of not knowing what's out there to help them and I can provide support. I wish I'd never had to know what RSD is, but I'll settle for this next best option. Because not doing something to help take down the monster is unthinkable.