Arthritis - Juvenile Support Group
Juvenile idiopathic arthritis (JIA), formerly known as juvenile rheumatoid arthritis (JRA), is the most common form of persistent arthritis in children. JIA is sometimes referred to as juvenile chronic arthritis (JCA), a term that is not precise as JIA does not encompass all forms of chronic childhood arthritis. Arthritis is the inflammation of the synovium (the lining...
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I was diagnosed with Systemic Rheumatoid Arthritis over 16 years ago. I am in my early 30's and for years I just told myself I would not let my diagnosis rule my life. Unfortunately I have reached the point where I forgot what it is like to experience a day without pain. In 16 years I have never experienced even a week of remission. I have tried everything from Advil to biologics. Nothing has worked to any real degree since Celebrex stopped working while I was in college. I think I am more looking for a place to vent than anything else. I don't think anyone in my life can truly understand what it feels like to forget what it is to be pain free. For the first time I am feeling my career choices are being driven by my disease. There seems to be no one who can comprehend what it is like to live day in and day out in a fog of pain that cannot be medicated away. I have reached the point where I am starting to give up and for the first time I can't seem to stop the tears and anger. My doctor once called me the best and worst patient. The best because I had the drive to keep fighting no matter what. The worst because I was determined to live my life as if nothing had changed, that included skiing after being told I should take the season off to let my body rest. Now I am just tired of it all and don't know what to do. I want to have the life I see my friends enjoying, a stable career paired with a loving family and I feel like I am not able to have any of that. After all, who would want to match up to someone like me? A woman who can hardly hold a fork on a bad day. I wish I knew where to put the anger that is suddenly boiling up inside. Any suggestions?
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I have also "powered through" as I have preciously said and I believe you are saying the same thing but I think this has been the cause of a lot of my problems. Just saying the words "I am fine" and "powering through" are okay for a while but eventually you will need to stop and say no, I am going to ask for help from my family (who are amazing) and professionals alike because I feel this is the right thing to do as well as being the right time for me personally. It may not be the the right things to say but I respect you for saying you are finally angry as I have only said this to myself recently after nearly a decade of struggling.
I hope you feel better about the anger as I already do by admitting I have anger. As corny as it sounds walking along the coast (as I live on a peninsula), or eating my favourite ice cream in an ice cream parlour, or simply escaping into a television show or a book for an hour does help me calm down or forget about everything. I hope my experience helps and thank you for saying what I could not for so long. Your post really helped my recognise in myself what you did and I already feel better.
I have yet, been able to work full time in my last 4 years due to my fear of medications. I am however a Audio Technician and need to keep my head together in order to continue to help my community. I was and am still quit hurt about the lies form my old doctors. After 4 years, I am just now taking to a PCP and looking for help from the right people.
I have changed my outlook on medication due to my first Dr. bad decision by treating me with ONLY highly addicted pain killers. I have now realized the natural option that seems to grow in our communities. Although difficult to find, C.B.D. Supplements work the best for me.
Life will never come easy, but thats what make it worth fighting for. :-)