Mary’s Arthritis Journal May 8, 2021

I have always been amazed by those who can work through illness. I once had a friend who had a chronic leukemia. During episodes of chemo, she found that she could not sleep. Instead of watching endless Netflix, she spent her nights researching and writing a successful blog on ghost stories. She used her down time to her advantage. I am not like her. I wallow. I vegetate. My brain seems to stop working.

When my rheumatoid arthritis is sending inflammatory messengers throughout my body, when pain is attacking every moveable joint, when I have depleted my stores of coping, I retreat. My body feels sick. My research goes on hold as does my writing. My mind is stuck in a quagmire. There is only a wish to escape and a hope that there will be an end, and in that end, I will be alive again. I will be okay.

My flares are becoming something to be feared. My ankles and my toes remain swollen. It is very hard to walk. My knuckles are swollen. Its amazing how much pain can emanate from them.  Pain seeps into my wrists and then elbows. My shoulders get that old feeling of having shards of glass in them. There is more, but you get the idea. Flares are painful, exhausting, discouraging.  My RA is progressing, worsening.  As my RA progresses and worsens, the spaces between flares are dissolving. I am becoming a living, permanent flare.  No more reprieves. 

I was on methotrexate for eight years. I have been diagnosed with three cancers and had the treatment for each including radiation for breast cancer. A few years ago, I developed a severe, necrotic infection in the tissue that had been radiated. The cause was methotrexate. Black box warning number 13 for methotrexate is soft tissue necrosis.  I had to stop the methotrexate. My treatment arsenal was empty. My only relief was with Medrol which clearly has limits.   

My doc and I agreed to try abatacept again. I have been injecting it for five weeks. Abatacept offers a 20% improvement for half of the patients who have been trying it for three months. Although I will take anything I can get, the biologic, at 20%, is barely taking the edge off. But it offers the hope that at six months on abatacept, I will have the possibility of reaching 50% relief.  Hope.