Real Profiles of Rheumatoid ArthritisPhotos © Stefanie Truman
Washington DC, United States
How long have you lived with RA?
I was formally diagnosed about three months ago, but previous to that my doctors had suspicions as early as ten years ago. It was a relief to finally have a diagnosis and to know that my pain and fatigue was not all in my head.
What advice would you give to someone who has just been diagnosed with RA?
The best advice I ever got about having a long-term illness was to read, but not too much. For about a month after my diagnosis I was downright obsessed with reading everything I could about every possible treatment and outcome. It became too much. Now I am an informed, but not obsessed, consumer of medicine and patient. Another piece of sage advice it to keep living. I am the same as I was last year, I just have this other little annoyance to deal with now.
Do you use any mobility aids?
I do not. I did spend the majority of last year on crutches due to a hip and ankle injury that I now know was RA-related.
How has living with RA helped to improve your life?
Living with RA taught me a valuable lesson- sometimes it is okay to ask for help. Previous to my diagnosis, I was fiercely independent, to the point where I would rather suffer than ask for help. I have learned that it is not a sign of weakness to ask for help on occasion. My cubicle mate now helps me open my water bottle every morning and my friends help me open my pill bottles and separate my medications once a week. I live by myself in DC (all of my family is in Detroit), so I am extremely grateful for my friends.
Do you have any visible signs of RA?
I get rheumatoid nodules on occasion, and my fingers look like sausages five days out of seven. My pinkie fingers are deformed, but I hide it quite well. Other than that, I have a few bald spots and bruises from treatment. Sometimes I think that if RA were a more outwardly- visible disease people would “get it” more, but then I remember that no one can truly get it until they live a day in my shoes.
Can you please describe some of your favorite coping strategies for living with RA?
Upon suggestion from my therapist, I recently took up yoga. I never saw myself as one of “those” people, but I really enjoy it. I take a gentle yoga class which focuses mainly on the mind. The visualization and meditation techniques I have learned through yoga have definitely come in handy during treatment days and in the MRI tube. Another great strategy of mine is to just take a nap- something I never did pre-RA. Sometimes your body and your mind just need a rest.
Can you please describe your current medical (traditional and alternative) treatments?
I am on methotrexate once a week, plaquenil, prednisone, folic acid, and a high dosage injection of vitamin D. I am starting a biologic in the next few weeks. I also take other medications to counteract the side effects from the prednisone (which I like to call the little white pill from hell). I practice yoga and meditation.
Is there anything else about yourself that you would like to share?
I have RA, but I am determined not to let it define me as a person.
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