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I'm Kylie. This is my face. I'm 20. Licensed cosmetologist. I don't eat animals. I saw a koala at the zoo once and cried. I'm a spoonie. I play guitar, ukulele and keyboard. I sing more than I talk. Pet rat enthusiast. Ask or submit. Thulium fails.
I wrote this for an autobiography project in school last year.
At age nine, most kids don’t think about what they do. They act crazy and do all the dangerous sports they please. I was the same way, doing rhythmic gymnastics and dance nearly every day of the week. That all changed though, faster than I thought possible. In a matter of months my whole lifestyle changed, and it will never be the same.
I’ve had aches and pains all my life; I had sprained ankles and fingers practically every day. When I was almost ten, I started doing rhythmic gymnastics. I became quite advanced, I could fall into splits and started choreographing floor routines. After only a few months of class, one teacher pulled my mom and I aside to say she wanted me to start training for competitions. However, I never got to start training. My wrists began hurting so bad that I couldn’t even write for school. My mom and I went to see my doctor, and there wasn’t much we could do. She said I had to drop out of gymnastics or the pain could get even worse.
My pains got worse anyway, and they were spreading. I couldn’t write, I couldn’t type. I ended up wearing splints on both of my wrists simultaneously to curb as much pain as possible. Then the worst happened. I was getting out supplies to sew a skirt and dropped the bin of fabric on my foot. It didn’t hurt much, so I forgot it happened until the next morning when I woke up in too much pain to walk. I was able to drag myself out of bed to get to the hospital, but they didn’t have any answers. The pain wouldn’t go away and I ended up on crutches and out of dance for three months. We went to numerous specialists, I got an MRI and too many x-rays to count. So many doctors said I was faking the pain for attention because they couldn’t find any other explanation. Finally, my pediatrician suggested the pain was from a syndrome called RSD (Reflex Sympathetic Dystrophy). At first my mom and I refused to believe it; the pictures and stories online were horrible. Everything we found were about patients put in wheelchairs for life or losing use of their limbs.
After seeing even more specialists, we finally all agreed: I have RSD. My foot started showing more symptoms that solidified our discovery. It changed colors and temperature, it was visibly breaking down in front of my eyes. I was quickly put into physical therapy, and forced to continue no matter how much it hurt and I cried. My dad made CDs of my favorite music to take my mind off of the pain. At home, my mom and I did desensitization therapy to fight the strengthening hypersensitivity all over my foot. I would soak it in luke warm water that felt ice cold or burning hot and rub it with towels that felt like sandpaper. In mid-October, things started getting really serious. My pain management specialist gave me a choice: either I walk by Halloween, or I’d never walk again. Being so young, it was really hard to fully understand what that meant. Instead of trying to understand, I used the shock as motivation and started walking that day. I don’t know where my self-control came from, but I pushed myself until I could hardly stand. To everyone’s surprise, I went trick-or-treating on Halloween night.
After another week, I went back to dance and picked up right where I’d left off. I performed in the Christmas recital, moving everyone that knew my story near to tears with how far I had come. I will never go back to gymnastics or do sports for fear of triggering a bad flare-up. I can’t use my wrists much without the pain coming back, I can only play instruments or draw for half an hour before needing a long break. There are many days that I hardly get through school because of all the writing, but I push myself through because I have no other choice.
Many people with chronic pain feel sorry for themselves, longing for the things they’ll never do. I’ve learned to accept my RSD, and work around the problems it causes. Although it will never go away, I won’t let my disease define me. I feel that by going through this, I can handle just about anything that may come my way.