Do You Know Anyone with Rheumatoid Arthritis?
If you’ve followed my blog for a while, you know that I have Rheumatoid Arthritis. A while back, I heard from Healthination, Inc, asking me if I was interested in being featured in a series of educational videos they were creating about RA. I was honored to be asked, but I was not only dealing with deadlines, I was also in the midst of coping with other health issues at the time (remember my stint as the turkey at the Mayo Clinic?). Reluctantly, I turned them down, but they found a far better spokeswoman than I ever could have been in cookbook author and arthritis warrior Melinda Winner. Believe me, cooking with RA has its challenges (Melinda has a great website devoted to the subject), and I love these videos that show how Melinda has learned not just to live with RA but to thrive in spite of it. If you know someone with RA, I think these videos will help you understand what her (or his) life is like a bit better.
I do have a couple of thoughts I’d like to add to what Melinda has to say, both for the RA sufferer and those who care about her. I guess what concerns me most about showing people who have overcome adversity of any sort is the guilt they can induce in people who aren’t at that point in the process yet. Note that Melinda has had RA for a long time. She wasn’t this powerhouse right out of the gate. (I’m personally still waiting to become a powerhouse!). Before RA is under medicated control, exercise, courage, and good spirits may simply be impossible, and that’s okay. Give yourself a break!
While Melinda stresses the need for exercise–and I agree–someone with RA has to be very cautious about the sort of exercise she does. All I need is a walk through a big box store to give me enough pain in my ankle to make sleep impossible, but the recumbent bike or the pool work just fine. It’s a matter of experimentation and there may be times when a flare is so bad that rest makes more sense than exercise. An inflamed joint should not be exercised and until the right medication is found to control inflammation, physical activity may be very limited. Before the right medication came along for me, I wrote two entire books using voice recognition software. I couldn’t type or cut a piece of pie or pull the sheets up to my chin. Exercise? I don’t think so! So if that’s where you are in the disease process, talk to your doctor about what you can and can’t do and don’t let anyone give you a guilt trip about your need to baby your joints.
Everyone is different. I receive an infusion drug for RA and there are always several other folks getting their meds at the same time I do. I marvel at how different we all are in our symptoms, our abilities, and the benefit–or lack of benefit–we get from various medications. So, be inspired by amazing women like Melinda, but be gentle with yourself or with your loved one who has RA. Learning to cope with chronic illness is a journey. Sometimes your pace of physical or emotional recovery may seem glacial, but with the new treatment options available and a better understanding of this disease, your chance of living a full and comfortable life are excellent. I know that for a fact.
Oh, Diane, this is a great post. It is so true that living with a chronic illness can be a different experience for every single person.
Some days it’s motivating to hear how well someone else is doing, somedays it’s downright infuriating because we want so badly to feel better it can make us a little green or a little guilty about not just “bucking up.” I seem to have turned a little corner in how I’m feeling over the last week or so, for the better, thank goodness, and now I am trying to transform my own frustration about my condition into positive thinking by encouraging others on my support forum, but at the same time, I need to remember not to be annoying. 😉
In case I didn’t say it before, I am in awe of your ability to carry on. You have truly been a role model to me. (Are you scared now?!)
Thanx Diane for saying it so perfectly! I always think to myself, why couldn’t my RA be like that? And I too have taken years to come to accept what my “challenges” are.
I work with a friend who has suffered from RA for years…I have followed her thru her journey for 17 years so I understand a little bit about the illness. She receives an infusion once a month and is also on daily meds.
Diane, I think you are a mentor to many people and such a great example that inner courage can prevail…altho I know you certainly have your bad days, most of us would never know it because of your love of life and complete dedication to your profession…
Excellent post. I don’t personally suffer from RA but I know several people who do and until their medication combinations were right, they could barely move and basically were in pain all the time. So they weren’t always able to put a happy face on for everyone. Now that their meds are right, both of them swim a lot (they live in Florida, so that’s fortunate) and they smile a lot, too. Good perspective. Thank you!
Julie, I’m glad to hear you’re feeling better. Also glad you have a support forum. I don’t know how I would have made it through without my online arthritis support group. they were/are a source of information and emotional support. So necessary, because they understand.
I need to add something, because it’s so important to me. On another forum where this blog post appeared, a woman mentioned a book by a doctor who had RA and cured himself with a Japanese diet. I’m posting my response to her here as well as in that forum:
Thanks for the input. I’m afraid you’ve hit a nerve! That was one lucky doctor. Believe me when I say that most long-time RA sufferers have probably tried every diet and every alternative treatment suggested to them along the way. I spent a year resisting traditional medicine in favor of alternatives and dietary changes and I have the ruined joints to prove it. For me, it was part of a long denial process that I had a serious disease that needed serious treatment.
There’s nothing wrong with trying alternatives, but I believe they need to be used in conjunction with the currently available medications to avoid disease progression in case those alternatives fail. I hear anecdotally all the time about RA patients who are cured by alternative treatment, but although I’ve belonged to several large support groups and know at least a couple hundred other RA patients, I’ve yet to actually meet one who can make that claim.
Every person who has RA or other such diseases hears about the miracle cures. The magic diet or Noni juice or vitamin regimens. When the suggestions come from well-meaning family and friends and go against a physician’s recommendations, it can feed the person’s guilt. What I always recommend is that caring friends and family go with the patient to a doctor’s appointment to become educated to the reality of what’s going on and the seriousness of the illness. Thanks for letting me spout off from my soapbox!
Excellent response Diane…your words apply to many diseases…my husband Gary has severe Diabetes and over the years we’ve heard everything you can imagine from people who suggest he try alternatives to insulin shots…suggestions ranged from Asian diets or Indian food, to vitamins and minerals we’ve never heard before. He has always accepted his disease and listened to his doctor first which in his case has been the only way to go.
Diane, I too have RA. I have had it for over 10 years. I had a major flare and now am in the stage of dealing with it and accepting the pain. I spin yarn and weave…my outlets. I am also self inject my meds and am on various meds. I have learned that I can deal with pain and have a wonderful life. I am classified as moderate to severe. The best time of my life was when my daughter asked me to watch her new baby (like she really had to ask). She said we will try it and I did it until he went to preschool at four. In between I also watched my sons little girl for about five months…two babies. It really got me through alot of feeling sorry for myself. Last year at 60 I finally made it to Topsail Island for vacation for a week. It was wonderful…Yesterday I made reservations for a great condo
at Queens Grant..maybe I’ll get some inspiration for the owner (lol). I read your first book last year and now have them all…Love them. Thank You.
Mary, it sounds like you’re doing very well. I don’t know how you managed to take care of the little ones–you have my admiration. I’m so glad you enjoyed Topsail! Are you staying in my place next time? That would be so cool!
Actually yes I am…I was going to rent the condo in the building but after I decided on this one I saw yours and changed the reservations…so I am going for 2 weeks in May scheduled but one week after is still opened, talking to hubby. Also due to the RA I had two hip replacements 6 and 10 years ago plus this past July I broke my leg due to a fall (Whoopsie) beneath the hip replacement. My rhematologist had some questions about the meds I was on and recent studies. I am doing fine and healed faster then the ortho thought and am only on a cane. I do not know how I watched the babies but I did it and compensated on how I did it but it was the best and it gives me the warm in the heart feeling plus the closeness of my grandson. He is five and is watching over me and telling me how good I am doing. A year ago I lost a friend of mine to complicationsdue to RA. She had to quit school in her 10th year. She was the most compassionate, loving, and understanding person I ever knew and her husband took care of her for all these years, a real Romeo and Juliet love story. Tony taught me a lot. Life is wonderful as long as you have love and can give love.
You sound like one tough woman, Mary! I’m so glad you’ll be staying in my condo. I hope you love it as much as I do.
[…] favorite author is Diane Chamberlain. I stumbled upon that we live in the same town and both endure Rheumatoid Arthritis. I left work in a hurry on a hot, humid day (which turns my naturally curly hair into a psychotic, […]