Real Profiles of Rheumatoid ArthritisPhotos © Frank B.
Knoxville, Tennessee, United States.
How long have you lived with RA?
I was diagnosed in early 2003, I was working around my house and my ankles became very sore. After a few weeks the pain was still quite evident and now was in my knees. I went to my Dr. and described my symptoms and he sent me to an RA specialist where I was tested and notified that I had RA.
What advice would you give to someone who has just been diagnosed with RA?
I would say to get as much information as possible about RA. The Internet has wealth of information that will help you navigate your way through this disease. Don’t be afraid to ask your doctor any questions you have about your condition. Early on I had all sorts of fears about what my future held, but with more knowledge I am more confident about what I can and can’t do.
Do you use any mobility aids?
How has living with RA helped to improve your life?
Not sure how to answer that.
Do you have any visible signs of RA?
Not permanently, I had some weird nodules that showed up on my elbows, but they are gone now.
Can you please describe some of your favorite coping strategies for living with RA?
My favorite coping strategies has always been my families support. It has not always been easy, but through it all they have been awesome.
Can you please describe your current medical (traditional and alternative) treatments?
Currently I am using Enbrel, I have been on Celebrex, Methrotrexate, Prednisone, and some others early on that I can’t remember. My mom said my grandfather had RA and he used a salve made from devils club root in SE Alaska.
Is there anything else about yourself that you would like to share?
I am an artist that works in various mediums, from painting, carving, stained glass. Currently I am into repousse and chasing of copper, which requires many hours in position that really put a strain on my back and shoulders, fingers and forearms. Since starting Enbrel I have been able to work freely and with minimal breaks. For me it is like I do not even have RA.
Over the past year, one of my main personal goals has been figuring out how to continue living a life that I enjoy, while accepting the presence of chronic pain. I think I’ve made great strides in this regard, as so many aspects of my life – from the beauty of establishing a daily schedule that works well with my illness, to my ability to exercise regularly, to the continual joy that can be found through the exploration of different books, music, and works of art – have indeed improved over the past (almost) full decade in which I’ve been living with rheumatoid arthritis.
But, over the past few days, I’ve been reminded that the constant pain that one encounters while living with a chronic debilitating condition is not just physical, it’s also emotional. When every cell in your body is screaming at you and telling you not to move, when you’ve got to find a way — once again — to trick the joints and muscles into responding to your commands, when you realize that the most “simple” acts of movement often require the most willpower to accomplish, it’s easy to start to feel tired.
And by “tired” I don’t mean that I’m looking for an easy way out, for a quick escape. Maybe I’m using it as an umbrella term which includes many feelings, including depression. Maybe I’m particularly sensitive at the moment, because of yesterday’s episode of pain and inflammation in my hands during which I was unable to look at my rheumatoid arthritis directly in the face, as I’ve (somewhat proudly) built up the strength to do during these past few months. It was one of those moment where doing so would have meant losing my breath — literally, as my anxiety grew beyond what I was used to dealing with. I remembered that I need not be proud; I just needed to get through this episode…so I looked away.
By looking away, I wasn’t ignoring what was happening at the moment (as if pain of that magnitude can even be ignored) and I wasn’t trying to control the emotions that I was feeling; I was just trying to get through the moment, in whichever way I could, with my breathing and my thoughts intact. And I guess it’s this stark reminder that pain always operates in the physical and emotional realm, and the fear that results from being pushed so close to the limits that one is normally comfortable with, that I am reacting to at this moment.
I’m already healing, I know…but I’m still in pain.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
“I’ve been thinking a lot lately (although writing very little!) about what ‘acceptance’ of RA means, and also about redefining my idea of ‘normal’. I hadn’t managed, and still haven’t managed in fact, to get my thoughts into words, but I think this afternoon I came as close to ‘acceptance’ as perhaps I ever will.”
Probing the mystery of drug-supply disruption
Rheumatoid arthritis can be a painful, debilitating disease. But like some of its victims, Fred LeStourgeon was lucky enough to find long-term relief through drug therapy – in his case, with a combination of two widely available generic drugs.
Then something odd happened, and LeStourgeon has been asking questions ever since. Last fall, one of the medications he relied on, leflunomide, nearly vanished from the market – only a much higher-priced brand version, Arava, remained available. And when leflunomide returned, the price had jumped more than tenfold – from about $70 for a three-month supply at his Acme Markets pharmacy to $942.”
Congressman probes drug shortages, price markups
(CNN) — Concerned about the nationwide drug shortage and exorbitant markups, a congressman Wednesday asked five “gray market” companies that buy and sell hard-to-find drugs to provide information on their sales.
Rep. Elijah E. Cummings, D-Maryland, ranking member of the House Committee on Oversight and Government Reform, said in a statement that he is looking into the extent at which “middleman companies are making substantial profits by engaging in a form of drug speculation.”
One of the companies allegedly sold a drug used to treat leukemia for more than $990 per vial, more than 80 times a typical contract price of about $12 per vial, according to Cummings.
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