much more than the physical

By robin Monday, May 19, 2008

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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.

Important info for RA sufferers!

Comments (2) | Add comment

Hollybgroovin, Health Guide

5/21/08 12:42am

I have to agree with you. I am 28 and have apparently had RA for 14 years now. It is so frusterating to know that people know so little about this disease that there hasn't been significant changes in the treatment as of yet. Of course, that doesn't mean that there won't be any or that there aren't wonderful medications out there. That being said it sounds like you are one of the many, like me, who hasn't experienced any relief yet. Yes exercise is wonderful for RA, but how can you exercise if you are experiencing intolerable pain or dealing with severe joint damage? Nobody can tell us exactly why we have this disease, so all we can do is ban together and help each other live as well with this disease as we can. Dream big! I always tell people that RA can't take your dreams away unless you let it. I agree with you and thanks for the positive attitude. Keep us updated! Good luck, and best wishes!

Jim

7/27/08 2:54am

Hi Everyone,

I have Still's Disease, adult onset juvenile RA. I was diagnosed shortly after the internal inflamation about killed me in October of '03. I was 41 at the time and very active, ate right but was always on the go. I spent a year on mega doses of prednisone, then methotrexate. In '06 I was put in indomethacine as needed for flares. I had a flare at the first of every month that year. After a visit to a major northwest rheumatology center I was faced with a life of the injections of my preference. I politely refused and went looking for a better way. I was not a fan of alternative medecine before that day. I am now! It's not perfect as I have had 2 flairs this year but I feel I have regained some control over the disease. I have a different feeling some nights when I'm lying in a pool of night sweat with my body in lock up mode. I have a very supportive wife who gets me through the tough times. It will pass and we're still alive. When I feel down, I think of the unfortunate people with something untreatable or terminal and I feel lucky in a way. I think Lance Armstrong said:

"remember, we're the lucky ones". Red his first book, stay active and limit your stress. Talk to a counselor. I think stress is something we create by responding to a situation in the wrong way. Keep looking for a cure. If your first rheumatolagist didn't try something that worked, try something else. Suck up your preconceived notions about homeopathic care and try it. We're all a little different. My PCP did not approve of my messing around with "that stuff" (alternative medicine). I had immediate results from a major diet change, and supplements...No gluten, dairy, soy, eggs, peanuts. I started adrenal supports, digestive aids, krill oil, dhea, vitamin D and few other things. I can eat most proteins but shy away from pork. The diet is nowhere near as bad as arthritis. I'm not allergic to any foods but am "sensitive" to a number of them. A western medicine alergy test won't show me anything but a sensitivity panel will. When I have a flair coming on I take "marcozyme" and "isocourt" which seem to make my indocin more effective. That's what I know, sorry it's so long. Be positive and keep trying. Overcome!

Jim.

much more than the physical

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