Surviving with RA

By babsnearl

1 min read

I am 74 & have had RA for 20+ years. I vividly recall the sympathy in my doctor’s voice when he gave me the diagnosis. I didn't understand what the "big deal" was since all I had was a persistent but annoying pain in my left wrist. Since I am right handed it didn't seem so bad. I took a Tylenol when it bothered me & life went on.

Within a year the pain & swelling had progressed to all my joints but my wrists, feet & one ankle were the most affected. I now was in the care of a rheumatology group & life started to change. Doctor visits, blood work, cortisone injections & new medications to ease the pain & swelling became part of my routine.

Fast forward 10 years & I moved from NY where my rheumatology group had 10 doctors to Florida where the nearest rheumatologist was 15 miles away. By now I had developed severe deformities in both feet & the surgeries began. Within a 5-year period I had 3 surgeries to straighten my toes, had my foot broken & pinned & a plate put in my ankle to reinforce the joint. I have some issues with balance as a result but still manage an occasional pair of high heels! I've also had numerous hand surgeries to release trigger fingers & a suspension/arthroplasty on my thumb. I now also have osteoarthritis and Sjogrens.

Life goes on & I stopped feeling sorry for myself & apologizing for what I can't do. I worked until 3 months ago & I walk 2 1/2 miles nearly every day for exercise. I try to watch my weight & would be in excellent health for my age if I didn't have RA according to my Dr. I take the maximum medication possible including a weekly injection off Enbrel & am fortunate my body has tolerated them all very well & I have good (expensive) health insurance to help pay for them. I am hopeful that I will continue to enjoy life in spite of RA.

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wannabe-healthy Member
That is a wonderful story. So glad you have managed to age well in spite of RA. Counting blessings is one way to keep going. I too often allow fear to mess up what could be a much better day. I also look too much at what I use to do, running, teaching, cleaning my house, being involved in church and community. I have had some bad times, and like you RA didn't hit me like a ton of bricks like it does some. My first 4 years (of about 1😎 of RA just became a bit of a nuisance because it interfered with my busy life. I continued teaching, started walking (not running), and still felt like doing a lot. Gradually, I became much worse and my husband was so concerned about how I looked each day when I came in from teaching (which I loved), he took money from his retirement and asked me to please give it up. I did, not so much because of the pain and fatigue, but because I wasn't the effective teacher I had been. The fourth graders deserved a lot better than what I was capable of giving. I've since been diagnosed like you, with OA, Sjogren's, but even more. The specialist I saw for my back problems diagnosed me with degenerative disc disease, so then came surgeries. I have fusion in my neck and lower back. and the damage was moving into my thorasic spine. When he said I needed more surgery, I cringed and asked if there was something else I could do. I now have a neuro stimulater that has kept my pain tolerable in my back and kept me from more surgeries. I recently was diagnosed with non-smokers' copd because of a troublesome cough. I truly want to be positive, and have an attitude of all is well, but honestly I've become weary about what's next. One really positive, like you mentioned, is my insurance. It pays really well. Hopefully I will allow myself to relax more, and accept all of this, but for now it takes all I have to make it through a day. Your optimism is wonderful, and I hope I can learn from it. Keep up the great attitude and acceptance and I'm sure it will add years to your life. Best wishes to you each day. Donna
Member
On March 24 of 2016 I was diagnosed with RA. My new diagnosis really hit me, I couldn't believe it. The first thought that came to my mind after the diagnosis was..."how am I going to take care of my two young children?" " How will this illness affect my life?" I was depressed and I cried for weeks. I had no one to talk to, because even if I talked about it, many people wouldn't even understand what RA is about. I got tired of explaining what RA is... is just say...."I have an autoimmune disease". It has been a year and two months since my diagnosis and thankfully I have been feeling great with 0 pain and 0 inflammation; until this March when a flare hit me again and it has remained lomger then the firt flare. This time it has attaked my feet; my ankles, my tendons and my feet balls. I went to see a new rheumatologist this past month, and they ran a whole new set of blood test and my ANA came positive along with my titer; which indicates there is a possibility of lupus. This can not be happening to me. RA and lupus? Are you kidding me? My rheumatologist hasn't confirmed that yet.... I praying that I don't have lupus. I understand that both are an autoimmune disorder. Living with RA is already a lot of a burden in my life; I don't need to add more illness.
1. Richard Faust Community Admin
 Sorry to hear that you have had so much to deal with in a short period Jessica, but glad that you have come to a place where you can get information and support.. Unfortunately, lupus and RA can often be comorbid conditions. Know that if the results do come back positive for lupus that you are not alone and that others can provide information moving forward. This article from our editorial team looks at lupus and RA: <a href='https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/lupus' target='_blank'>https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/lupus/</a>. In addition to the support that you can find in places such as here, never hesitate to seek professional care. Sometimes just having that personal connection can make a difference. This article talks about not ignoring mental health: <a href='https://rheumatoidarthritis.net/living/dont-neglect-mental-health' target='_blank'>https://rheumatoidarthritis.net/living/dont-neglect-mental-health/</a>. If you are interested in something like a support group, your doctor may be able to help with that. Wishing you the best and please keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)