After ten years with RA, I still have one big fear. It is the fear of having a flare that does not end. Another flare like the one I am starting to have. It is the fear of one long, endless flare. Sleepless aches, simmering pain. Growing into a crescendo of misery. Pain and exhaustion.
Uncertainty lingers in the air. It is hard to make plans. Flares strike without warning. I have never had a premonition of a new flare. I am suddenly in the middle of one. Unpredictable.
Flares seep into the nooks and crannies of my body. It feels like my whole body hurts. Every corner aches and the aches become sharp pain with movement.
Walking through the vast VA today, my arms and shoulders ached so much I wasn’t sure I would get there or that my son would fine me after he parked the car. Is a wheelchair next?
I have been lucky. Sometimes more than others. Actemra and my various creams have held my symptoms in check up until now. But as this flare gains momentum, I wonder if my luck is gone and Actemra is no longer the guardian at the gate.
RA patients are inclined to be depressed. Is that what I am trying to be? It is easy to see why. I live in pain every day. The degree is the only variable. At my January visit, Dr R, my rheumatologist, was crystal clear. Actemra is my last biologic. There is nothing else left. I have tried them all. The decision has been made not to use the JAK inhibitors. Too much of a cancer risk given my history.
This edict bothers me more than any of my cancer diagnoses did. I felt that my cancer could be treated, I was fortunate with that. My RA is out of treatment options once Actemra is done.
Dr R keeps me on low dose Medrol. She wants me to go to the pain clinic, PT, Dermatology. Anyone who will take me. Reminds me of the House of God. Trying to keep my mind off the inevitable. It feels like being terminal. And after three cancers, I don’t take that lightly.
I thought about deleting this post, but the truth is RA can be a very discouraging disease. Pain, of course, is the big one. At the same time, the feeling of being sick, listless, is hard to manage. The threat of disability hangs in the air.
I am an optimistic person. My recovery time after a flare is short. I have had a lot of practice. So I know I will have better times. Maybe. I am not really sure.
I hear you! I’m having an FM flare now and I just have to ride it out. Lots of rest and fluids. It probably was caused by my recent travel/cruise where I inevitably pushed myself too hard. I always know I will pay in the end. But like you I look forward to the reprieve. Hang in!
LikeLiked by 1 person