Well, I went to Duke Hospital today. I used to go there a lot for my eye appointments, starting when I was six, but now that I need less specialized treatment for my vision problems I go somewhere closer to home. Two things I had forgotten: the hospital is a very big place, and they have good cafeteria food. But on to more important things--the results of my appointment.
I met with the pediatric rheumatologist, and she was a very nice lady (although I could tell she was more used to working with kids.) She and her assistant asked tons of questions and I had to fill out a chart of all my symptoms. They tested my joints for hypermobility and I got a 7/9 on the Beighton scale test. The doctor kept on saying, "You're just like Elastigirl!" and pointing things out to her assistant who just stared at the way my joints moved. They also noticed that my hips move inward when I walk, causing my knees to move out of place as well; and my feet are flat which has made my ankles misaligned. I can help my feet at least by getting better orthotic inserts for my shoes.
Then on to the injuries. Ankle sprains as a child, lots of them. Diagnosed with scoliosis in middle school. That time I dislocated both my patella and my shoulder on my 13th birthday. A nasty wrist dislocation last August. Other scattered injuries, only getting more and more frequent as time went on.
The final say was most definitely to joint hypermobility syndrome and most likely to ehlers-danlos syndrome, although a completely official diagnosis for that would take meeting with a geneticist, probably far away. As they are similar and the treatment is the same, it doesn't matter which one I call it. I also need to keep an eye out for dysautonomia as I've been having some dizzy spells and fibromyalgia as I've been experiencing some possible symptoms like fatigue and headaches and pins and needles pain. She doesn't want to put me on stronger medication, as I'm already on 1200 mg of Ibuprofen and Aleve as needed, and she doesn't think narcotics would help much with the pain but the side effects would be worse. I start physical therapy soon to see if that helps.
The main thing is how it's going to change my life. It already has, but this gives a sense of permanence to it. I'm always going to have problems with this, I'm always going to have to think about it when I make plans and I'm never going to be as healthy as other people my age. The doctor said I need to use the stairs as infrequently as possible, try to not lift heavy things, and adjust the way I exercise. Running is out of the question, but dancing along with working with the physical therapist might help strengthen my muscles in a beneficial way. I'll have to take things into consideration for college-maybe a smaller campus, definitely handicap-accessible; and I'll also have to reconsider whether or not I'd be able to handle the long hours that being a surgeon requires. I'll always have to live close to doctors; I'll always have to live with pain. But as I've lived with pain since December 2012, I've adjusted. I'm adjusting.
I still have a life to live. I still have a future to embrace. This is not the end of everything. It's only the beginning.
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