Rare tissue diseases
By Colleen Sullivan, Columnist
Twelve years ago I got sick overnight. Really sick. I was over at a friend’s house watching a movie and started feeling really hot. And not just kind of warm — I felt like I was on fire!
I was so scared I immediately called my Dad to come pick me up. I went home, got in bed and thought I just had a terrible flu.
A few days later I wasn’t getting better. My feet had swollen so much it was very painful to walk. A doctor told my parents I had possibly sprained my ankle and sent me home with orders of bed rest. But it only got worse. I started swelling all over my body and was unable to get out of bed.
Within 10 days I went from a vibrant teenager to totally bedbound and my life would never be the same.
I still thank God for my luck that day.
Things got so bad so fast, my parents took me to an internist. I still remember waiting in the exam room. My parents both stood there by my side and I could see the worried looks on their faces as they kept assuring me everything would be okay.
I was lying on the examination table with a burning hot fever of 105 degrees. I held my Dad’s hand and it felt so cool and reassuring against my hot swollen hand. I was too sick to be scared or worried. I remember I had to be carried in and out of the room. I remember the cold tears running down my hot face.
Finally the doctor came in and looked me over. Immediately he said he’s pretty sure he knows what’s going on. He told us he had just written his final project for medical school on a very rare disease, dermatomyositis, and that I had all the characteristics of it.
He sent me across the hall for testing and started me on prednisone right away. If it would have been any other doctor that day, who knows what would have happened to me. I hear stories every day how so many people go undiagnosed for years because these conditions are just so rare.
Fast forward 5 years and I started to go into remission. I had so many treatments, so many needles, and so many tests, I felt like a pin cushion. I sat for days in cancer treatments centers getting chemo. It was really hard, but it paid off. I was finally starting to feel better.
I remember very vividly one day after an IV treatment, I got home and my Dad asked me how I was.
I said, “Hey, Dad! Look what I can do!”
And I jumped up on the couch and started bouncing. My Dad and I immediately started crying and he jumped up and was bouncing away with me. We were so happy I could do that again! I still had pain from the damage done — but wow, I could go out and live again.
Now jump forward another 5 years. Some very stressful things happened in my life. I moved across state lines 4 times in one year. I had 3 deaths in the family. And after moving to Florida this last time I guess I just broke down.
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