Today I found out that the new name for Juvenile Rheumatoid Arthritis is Juvenile Idiopathic Arthritis. What a ridiculous name. Apparantly idiopathic means a disease without a known cause. But more importantly, when did this happen? I was diagnosed with JRA/JIA 8 years ago and thought that I knew all there was to know about it. I researched the causes, symptoms, treatments, alternative therapies, 'miracle cures', doctors, etc. and thought that was that. Now I'm discovering it again (as obviously much has changed) and realizing that in reality, nothing has changed.
I am so disappointed with the progress made towards improving the quality of life for people with arthritis that I've decided to do something about it. After 8 years I've finally realized how much emotional residue I have been carrying around. I need more than just my rheumatologist and the budding hope and then overwhelming disappointment that comes with him and all of the brilliant new drugs on the market that he's tried on me. I'm tired. I'm 20 years old and I'm really, very tired. The overwhelming tiredness has been creeping up on me for years and finally smacked me in the face last week. I've wanted to do so many things with my life but have struggled with the reality that I may not be able to do these things because of the physical demand. I wanted to ignore the arthritis, secretly telling myself that I would be one of the lucky ones to g into remission, but I think it's time to stop telling myself that. Finally admitting a little bit of defeat, I'm going to do something else that I've been wanting to do for awhile and I think it will bring a lot of satisfacton to my life and to others hopefully. And, it will fit my lifestyle needs.
I am going to start a website or a blog. I can't quite describe the details now, but I want it to be a place for all of us to find inspiration, truth, hope, perspective, innovative forms of relief, new kinds of therapy and the latest information on alternative medicine. I'm sick of magazines telling us about how walking will bring relief. Walking is boring. and it's painful. and sometimes very unrealistic if you're in a flare. Are these articles written by RA survivors? I want more than advice on what will make my arthritis less painful, and I think you all do too. There is so much more to arthritis than what is being talked about now. I want more. Anyways, I'll be working on it this summer. I probably won't finish for a couple of months, and it will start out small, but in the true spirit of a JRA survivor, I dream big.
