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RA and Me |
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I have Rheumatoid Arthritis, but I am determined to enjoy life and not let this disease dominate me. I live with pain everyday, although most days it is a low scale pain. I currently take Folic Acid daily, Methotrexate weekly and Humira injections twice a month for my RA.
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My feet and knees began hurting me somewhere around the age of 38 or 39. I just brushed it off as feeling the effects from the abuse that I had dished out on my body over the years. At the time I broke my last bone, my right ankle for the second time, I was 43. Shortly after the ankle healed up (bones don’t heal at 43 like they do when you’re 25), the printing facility where I worked for 16 years, announced it was shutting down. After finding another job, I noticed my hands and fingers had begun hurting. Again, I just brushed it off. After all, it wasn’t a bad hurt, more like a small ache every now and then. I was 44 and the pain was more persistent so I went to see my GP. Although concerned, no blood work was done and I was diagnosed with synovitis and was only taking Aleve for a year before changing GP’s. By this time, my feet were hurting badly and my hands were hurting most of the time now. My new GP ordered blood work and put me on Celebrex. Within 4 days of starting the Celebrex, I went from bad to worse. I could barely walk, my hands and wrists were swollen and hot, my fingers were nearly twice their size. I couldn’t close my hand up to hold anything. My right shoulder had began hurting and felt like it was dislocated again (I had dislocated it in 88). I quit taking the Celebrex the same day that I got the news that I had RA, that was in early 2003. I remember feeling devastated yet relieved at the same time. I finally knew what was wrong with me, but it was bad … real bad. I was numb over the next 2 weeks having more questions than I had answers, I didn’t know who to talk to or trust, or how to search for and find a good rheumatologist. During this time, I sold my motorcycles because I thought my life was over. I literally hurt so bad for 4 to 5 months that I prayed to die. I was hurting badly all of the time; the pain would wake me up in the night. I hurt so bad that I would not want to get out of bed, wouldn’t do me any good anyway because I hurt sitting in the recliner or on the couch as well.
My first rheumatologist was not a good one. However, he did get the progression of the disease slowed down. He put me on Methotrexate and Enbrel. I would try to talk to him, ask him about things that I had read about and he would cut me off. He would tell me that I can’t believe everything that I read and that if I wanted to get better, I would listen to him. Nine months later I walked into my second rheumatologist and the difference was like night and day. The first thing he does every visit is want to know how you’re feeling, what has been hurting, what kind of activities you have been doing. We will talk sometimes for 20 minutes or longer before he starts the examination process. We have tried Minocycline with MTX while stopping the Enbrel, altering the dose of MTX while sustaining the Enbrel injections; he has given me Metanx (neuropathy medicine) samples for my feet. The Metanx made my feet feel better within 3-4 days and I was very relieved … at first. One of the side effects of Metanx is mild diarrhea. No thanks, I would rather have my feet hurt.
The Enbrel worked well for the first 5 1/2 years but stopped working. After discussing other medicines to try, I next chose Orencia. The Orencia never really worked for me. For the first 2 weeks immediately following an infusion, I felt great, but then I hurt over the next 2 weeks waiting for another infusion. So next, I asked to try Humira which I am still currently taking with good results so far. Some days I walk with a limp, my feet hurt every day, my hands hurt most days and occasionally my right shoulder, right hip and both knees join the party. And then there is the clumsiness, the days you can’t think clearly, the swelling and fatigue. I am far from normal, but on the other hand, doing better than I expected to be doing after 8+ years of living with RA.
I am back on a bike and riding every chance that I get now. I am out to prove that having RA is not the end of the world. Your world changes, but you have to change with it and continue to live and enjoy life the very best that you can. We (RA patients) have to work harder at everything than normal healthy people, this includes having fun and my riding is no exception. I do not ride pain free, however the thrill I get every time I ride far outweighs any pain I experience.
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