Tuesday, 17 June 2014

Becoming Ill

Recently I was asked (by the lovely Ms. Rainbow) if since I got arthritis at a young age, did I have a transition period of getting sick or did I always accept?

In all honesty, it was a very long, ongoing transition. When I was very little, I wasn't 'normal' like other kids were: I tired very quickly, my leg dragged, I was very stiff and I always remembered being achy. But I didn't know that wasn't normal until I was eight years old. At eight years, I had what I still call the 'worst flare of my life.' I could barely move and was in hospital for about a week and a half (I'm still a little fuzzy about what went on at that point). I had an extremely high fever and severe hip pain, and all my scans showed inflamed fluid on my joint. Unfortunately 'the greatest children's hospital in the nation' sent me home and said it was viral arthritis, and never followed up. Afterward, my joint pain was much worse in my hips- in fact, they were the only joints that bothered me.

  After that flare, I felt like a fake when I didn't feel good or didn't want to play because I didn't know what was wrong. I was seen by more doctors at 'the greatest childrens hospital in the nation,' and was told it was growing pains and would go away if I ran and played like other kids, and when I was ten years old I was given a diagnosis of tendonitis. Even though I felt sick, I wasn't 'allowed' to be sick and rest and be excused for things because I didn't have a name for it. I felt so confused. I use to Google my symptoms to try and find out what was wrong, and even I knew at age ten that tendonitis wasn't what was going on. I also began to get worse- now my knees and ankles weren't feeling so good.

I was twelve when a miracle occurred. After a gym class that left me in tears from pain and humiliation from a gym teacher who made me run and pointed out my swollen, knocked knees to the class, I was refered to another hospital. I saw an orthopaedic specialist who ran a battery of tests and I was immediately sent to a rheumatologist. It was amazing how for the first time in my life, someone other than my mum understood I was in pain. After I began seeing the rheumatologist, my life  flipped. The medications I began taking made me violently ill. I may not have felt good all of the time before, but I became sick almost all the time. By the summer, I had lost all my friends because I was no longer able to keep up with them. All of a sudden, I would never be considered healthy. Though I was glad I was being treated, nothing in my life was the same.

It was the beginning of the next school year I was diagnosed as JIA and started methotrexate. I did not feel well on methotrexate by any means, and I lived in a foggy, cold and lonely world. The diagnosis confirmed what we had thought for years, but now it was real. I felt hopeless. It was that year I would come to terms with my diagnosis, but it did take a few months. Feeling horrible and knowing JIA is chronic, I couldn't imagine I would have to live miserably for all my life. But changing rheumatologists made it easier: I was taken off of methotrexate and began to make friends with other chronically ill kids. I felt better. He also correctly identified my arthritis: Juvenile psoriatic arthritis.

My transition was miserable because I felt powerless in what happened next. I did not get to control what happened next, but I also didn't get a say in my medicine or how it affected me. My diagnosis went on for a very long time, and it took a year to really feel okay again. Even though I never felt right and from age eight on I knew I was sick, I only found the truth when I was about twelve years old: I was chronically ill and there is no magic cure. But I made it. Years later, my spine and shoulders are affected, My kidneys aren't so great, my fingers turn blue in cold, and a whole slew of other I problems. I've coped. It's hard when it's first happening, but you make it work.






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