I hope everyone is having a healthier 2012. It's been a while since I have posted. Please forgive the absence. For me 2012 began with more reactions to medicines. This time it was IVIG and cyclosporine. They both were some of the last options I had available to me and after just one half of the first day of IVIG I developed a crippling headache that sent me to the hospital . Cyclosporine gave me a lot of digestive problems and cognitive interference so to say. As for the Dermatomyositis, my eyelids continue to swell though they have calmed some from the severity of what was the month of December. Refer to my last post to see a picture. The arthritis is also still flaring and I believe was triggered by the decrease in steroid which was increased a few months ago for my eyes. Every time I decrease the prednisone I flare. After this last stunt with prednisone and its failure to help in any way...I refuse to use it any longer has an intense treatment regimen. I only stay on it now because my body has become so dependent on even a small dose.
So what's next? I have recently switched doctor's and I am waiting for insurance approval to be seen by top notch specialists at John Hopkins Hospital. Til then I have begun Cellcept for the dermatomyosytis and we are waiting a few months before we add another arthritis drug into the mix. While I understand the caution because of my reactive history, it's very difficult living on pain medication to function most days. January was a particularly difficult month for pain and my emotions were a roller coaster. I retreated a lot into my room and had no desire to talk much to anyone. Accepting a 2nd autoimmune disease, especially because it brings so much discomfort and disfigurement to my face, has been difficult. Although its been 16 years now of having RA I still even wonder if I have accepted my life. I wrestle with thoughts often about it and even beat myself up over not being more accepting of what I cannot change. Then, just the other day I read a recent post on Rheumatoid Arthritis Guy Blog and it summed up everything about how I feel about acceptance. It read ""With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions". The full article can be read at http://www.rheumatoidarthritisguy.com/2011/11/10-things-ive-learned-from-living-with-chronic-illness/
As the month of February comes to an end, I am coming off of the roller coaster slowly with less bumps. I am getting back to the more positive me and back to reading how I can naturally improve my health. The pain level is still quite high and the insomnia has worsened but I have begun some projects to try to keep me busy and to find joy in life. It's very important to give yourself time to be sad and to explore the harder emotions but once we begin to piece ourselves back together I truly recommend busying the mind with something you love to do. As I have mentioned before acting is a love of mine so I have recently set up an actor's meetup group in the south jersey area. Many groups like this are over the bridge in the city or further north and often too difficult for me to get to. So If I can't go to them I will bring them to me! Just another way to not let the autoimmune disorders beat me.
So with all that said...feel free to add to this discussion on acceptance. How have u accepted your disease or do you agree with me and Rheumatoid Arthritis Guy that it is a repetitive circle of acceptance, denial, and other emotions? What helps you "accept" your situation?
Lots of Love,
"Living the life of an over dramatic immune system"
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