As Christmas is getting closer, my mind is still thinking about my health and pain issues. I can't seem to relax or stop worrying!
One question that's been in my head for awhile is now that I'm 21, do I stop calling it Juvenile Rheumatoid Arthritis and start calling it Rheumatoid Arthritis? The sensible answer is yes, I'm not a juvenile anymore! But the sentimental answer is more complicated. Of course in my heart I will always have Juvenile Rheumatoid Arthritis. So much of my childhood was shaped by this diagnosis, and in effect, I was shaped by this diagnosis.
However, it's more complicated as my mother reminded me a few days ago. My diagnosis was actually Still's disease, which they call Systemic Juvenile Rheumatoid Arthritis when the onset is during childhood. So for ten years I've been saying Systemic JRA and now do I say Still's Disease? That's even harder to explain than RA!
Basically, Systemic JRA is to Still's Disease as JRA is to RA. The difference between the two groups is that the inflammation is systemic in Still's Disease and Systemic JRA, hence the name. The inflammation involves organs (like the eyes and heart), the skin (in the form of a rash), and there are fevers of 103 degrees F/39-40 degrees C and chills. When the disease does not go into remission, it usually carries on into adulthood as just rheumatoid arthritis (the rash and fever typically disappear...this has not happened for me). I still have all the same symptoms as the day I was diagnosed. The other difference is that the cause of Still's disease is thought to be a viral infection.
"Adult Still’s disease is a disorder that has characteristics similar to those of the systemic-onset variation of juvenile rheumatoid arthritis, except that it occurs in adults. Its symptoms include a high fever that spikes in the evening, a rash that accompanies the fever spike, muscle aches and joint pain. The disease can go into remission, or it may lead to chronic arthritis.
The cause of adult Still’s disease is unknown. Scientists’ main hypothesis is that Still’s disease results from a virus or other infectious agent, but no conclusive evidence has been found to prove or disprove that hypothesis." ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
After reading those confusing definitions from the AF, you can see why it is hard for me to believe that there is nothing I can do about my disease. The cause of my disease is not necessarily an immune system turned against me. Forever I've known (perhaps instinctively) that my symptoms felt like my body was trying to get rid of an infection...the fevers, the fatigue, the rash...It's all the same as if you had an infectious disease. In fact, I was sent to an infectious disease doctor before I was sent to a rheumatologist for a diagnosis! So, in the end, I was diagnosed with Still's disease/Systemic JRA, and given immuno-suppressants. And this is the part that bothers me the most. Why was I given immuno-suppressants if the cause is thought to be a viral infection? Even if they're not sure and they don't have another option for me, they could at least say, "Hey, we have no idea if your symptoms are caused by a virus, but it sure looks like it; we are going to suppress your immune system so that it won't react so violently to the possible infection because we don't have enough money or people to do the research to find out if it actually is an infection." If they said that, then at least I wouldn't be so mad that I had taken those meds for so long, but no one looked me in the eye and said that!
All of this is running through my mind as I am waiting my Lyme test results. A few weeks ago I told you all about how I am getting re-tested for Lyme as my symptoms seem to be the same as those of Lyme and also there has been a serious misdiagnosis problem in my area.