A few weeks ago, Rheumatoid Arthritis Guy wrote an Open Letter To Arthritis Today, in which he asked the editor of that publication to please increase the visibility of men living with rheumatoid arthritis.
A lot of comments were received in response to the above post, both here on my blog and in a discussion thread at RA Connect. In addition to the issue of gender representation, readers also raised concerns about the accuracy of overall depictions of people living with rheumatoid arthritis. Quite often, the reality of our lives includes mobility aids, visible deformities, physical challenges, and emotional challenges – and these are often not reflected in the words and images that we find in different forms of media.
Just as I believe that each one of us has the power to raise awareness of this disease with which we live, I also believe that each one of us also has to power to contribute towards creating this accurate depiction of people living with rheumatoid arthritis, that has been missing up until now.
So today, I would like to present the first of a regular series here on my blog: Real Profiles of Rheumatoid Arthritis. Rebecca Fleming has generously offered to work with me in creating this inaugural profile. I look forward to profiling many more people in the future!
Real Profiles of Rheumatoid ArthritisPhotos © Rebecca Fleming
Los Angeles, California, United States
How long have you lived with RA?
30 years this October.
What advice would you give to someone who has just been diagnosed with RA?
Start treatment right away. In order to slow down the progression of the disease and to protect your joints from as much damage as possible, get on a TNF inhibitor or a DMARD right away.
When I was finally diagnosed in 1980, my treatment was six Bufferin a day. By 1984, my treatment was 1,600mg of ibuprofen per day. I was not put on a DMARD until 10 years into my disease. By then, a great deal of irreversible damage had already been done.
I would also advise newly diagnosed patients to become as knowledgeable as possible. Read books, do research, go to trustworthy websites (such as the Johns Hopkins Arthritis Center or the AF) and educate yourself on RA. Educate yourself on medications and their side effects. When your doctor orders bloodwork for a CBC or a sed rate, ask him/her what that means and why they’re doing it. No matter how good your rheumatologist is or how supportive your family is, this disease is your’s. It’s happening to your body and you must work to protect it.
Something else I would suggest – let go of perfectionism. Because of our disease, we are limited. I can’t workout at the gym 5 days a week. I can’t vacuum my house and scrub the shower like I want to. I can’t chop and slice and dice food to make a fabulous dinner for guests. Therefore, I don’t have the body I’d like to have, my house is never as clean as I’d like it to be, and if I have people over, they have to eat store bought hors d’ouvres rather than something homemade. And I have to let it go. Easier said than done. After three decades, I’m still struggling with this one!
Finally, I would also suggest rest. Rest is underrated. Rest is a low priority for most people. I actually schedule my resting. If I have plans for Monday and Tuesday, I make sure to block out Wednesday as a rest day. If I don’t, I will pay the price later on and wind up in bed for four days instead of just one.
I understand that people have to work or have children to care for, so it’s hard to schedule time to rest. But often times we don’t schedule rest days because we don’t want to miss out on an activity or have “things to do”. After 30 years of living with RA, I’ve learned that if I don’t schedule a rest day, my body will do it for me and it won’t be pleasant!
Do you use any mobility aids?
How has living with RA helped to improve your life?
It has made me a much more compassionate person. I care about others and have spent my entire adult life working and volunteering to help others. Without RA, I think I would have been a very self-centered person who placed value on all the wrong things. Picture Alicia Silverstone in Clueless. That’s who I think I would have been without RA! J
Having this disease has also made me thankful for what I already have. I can walk and see and hear. I have a caring family, a roof over my head, and food on the table. Those are things that should never be taken lightly or taken for granted, yet most people do. Thanks to RA, I’m not one of them.
Do you have any visible signs of RA?
My hands are pretty deformed from arthritis. My fingers are knobby and veer off in different directions. My hands look permanently swollen. They also have big scars running down them from the surgeries I’ve had to repair torn tendons due to RA. While my feet look pretty normal, some of my toes are deformed just like my fingers. Other than that, even after 30 years, the rest of me looks fairly “normal”.
Can you please describe some of your favorite coping strategies for living with RA?
Well, I have tried just about everything. A lot of the popular strategies (meditation, visualization, yoga, even prayer) have not worked for me for one reason or another. I’ve had years of therapy and that has helped tremendously. It gets expensive, but it’s worth every penny.
I suppose my favorite strategy is distraction. I try to focus on something other than my pain and disability. If I can get out of the house, I do. I socialize as much as possible. If I am alone, I’ll try to read a book or watch a movie. To have my mind think of things other than my RA is a great coping mechanism for me.
Can you please describe your current medical (traditional and alternative) treatments?
Currently on prednisone, but trying to taper off. I’m hoping to get off prednisone and return to Humira soon. Humira worked really well for me.
Is there anything else about yourself that you would like to share?
One thing people need to remember is that the stereotype of the arthritis victim – the old woman hunched over in a rocking chair – is a myth. I’ve had RA since I was 11. I’m still only 41 (they tell me that’s still considered young these days! J).
I like to have drinks with friends. I can’t leave the mall without at least buying a lipstick. I’m a rocker chick with a tattoo who worships the Rolling Stones (I’ve seen them 10 times in concert and will be airlifted in if necessary!). I’ve been married for 10 years to a man who makes me laugh hysterically and we have a little dog I rescued who is completely crazy and we adore her. And I have RA.