The past few months have been difficult. I’ve had my medication fail on me. I had been taking Cimzia which I truly loved in the beginning, and it suddenly stopped working. To be fair, I quit taking Methotrexate in December. So I believe that the combo of both Cimzia & MTX were helping but my body couldn’t handle the chemo drug. It’s really the only drug I’ve taken that on this autoimmune journey in which the side effects kicked my butt. My doctor prescribed prednisone for flare ups and that seemed to help me get over the big flares that were cropping up each month. Without Methotrexate, Cimzia wasn’t enough.
My March rheumatology appointment was quite different from previous visits. I took a photo of my ankle. It’s swollen and grotesque appearance is embarrassing for me to show but coming home daily to this level of pain due to this ankle, it had to come out of the closet. I told my rheumy how lousy I had been feeling. That I was at a new low point and I actually am starting to fear that I can’t go on working full time. This is my greatest fear. I think this is the first time I showed weakness and my doctor heard it. For years, the doctor has said, “I think we can do better”. I thought I have been aggressive. I’ve tried 3 biologics and failed 3 biologic drugs. I’ve failed on methotrexate twice and Azulfidine stopped working altogether, too. I can’t seem to wrap my brain around the fact that I can take an antibiotic and it cures my sinus infection but all the medication I take for my RA….failure. I guess when I hear the sentence, “I think we can do better”, I simply don’t believe.
I want to get better but I can’t envision it. I’ve lived this way for 11 years or so. I always fall back to “It’s not as bad as it was in the beginning”. Or, is the disease getting worse or is it my 40’s that are slowing me down. Failure is not something I’m used to. I work hard so I don’t fail. My autoimmune system doesn’t seem to understand that.
I’ve tried so hard to get better/healthier. I’ve changed my diet, tried the water cure, acupuncture, meditation, cleanses, shakes, physical therapy, swim therapy, etc, etc, etc. Nothing made me ‘better’ or feeing healthy. I’m to the point when people recommend something (like going gluten free) I want to scream b/c I failed that, too! I’m a failure at holistic treatments, a failure with western medicine. I’m a failure at being healthy. I fear this is as good as it will ever get in terms of controlling my disease. I fear living in tremendous pain 24/7 for the rest of my life.
Normal activities like showering, grocery shopping, laundry, house cleaning, have totally overwhelmed me. Today in the grocery store I realized I couldn’t reach the dog food on the top shelf b/c my shoulders are so swollen that I can’t extend them to reach the top shelf. Years ago, I walked out of SuperFresh b/c I couldn’t get the tampons off the top shelf. Today, I called out to a woman stocking shelves. I told her my problem and asked her to help. At that moment, I failed grocery shopping (in my mind). The woman was so sweet (after initially scowling at me). I apologized for interrupting her and she said to never be afraid to ask for help. She then asked if she wanted her to come with me for the rest of my shopping. I politely declined, thanked her for her kindness and limped away. Eleven years ago, I would have walked out of the store and cried in my car. I guess I didn’t fail my every day task after all.
What does this all mean? Time for another medication change. Next up to bat? Actemra. An hour long IV infusion drug. I have to take time off of work monthly to get my dose. I run the risk of scary, crazy side effects that scare the bejesus out of me. Do I fear failure yet again? Absolutely. Will it stop me from trying? Absolutely not. I can’t go on like I have been. This time, I’m going to focus on the possibilities of better health and maybe remission….and just maybe my scary ankle will return to a memory instead of a reality.