Ch.99 Why Now? Pat has a Flare Up of her Auto-Immune Disease
July 2021.
Pat endured the first attack of bullous pemphigoid almost exactly one year ago. Bullous pemphigoid is an auto-immune disorder in which Pat’s own immune system attacks the cells that connect the upper two layers of the skin, the epidermis and dermis. The result is terribly itchy and painful rashes and fluid filled pouches called “blisters” on her legs and arms. Pat was prescribed the steroid prednisone which did eventually cause the disease to go into remission. Since then, Pat has been taking a weekly medicine to keep the bullous pemphigoid at bay.
Last week at the hospital I noticed one blister on her armpit. And when I looked, I saw others scattered around her body. I sounded the alarm (This condition is so rare the nurses and attendants could not be expected to identify it). I asked them to apply a steroidal cream that helps dry up the blisters; fortunately, I had kept several tubes of the cream from the previous episode. But more blisters were developing and by the time Pat transferred to the rehab center she was in pain. Then the palms of her hands became red, and she went from being in pain to suffering. The rehab staff quickly arranged a zoom appointment with her dermatologist which took place today. Her weekly medication was increased, and more steroidal cream prescribed. (It would be dangerous at this time to try prednisone because it would make her even more vulnerable to infection and it raises blood sugar levels, so the doctor is holding that in reserve.) But last night she was tortured again by the pain in her hands. All I could do was to hold her and get the nurse to give her a couple Tylenol tablets. Just as the last time, I am feeling helpless to relieve her torment.
Why now? Why, when Pat is fighting to regain her strength so she can return home, does she also have to face this awful disease? My whole being is screaming IT’S NOT FAIR!
Rationally, I know that Pat’s urinary tract infections have greatly stressed her body and left her more vulnerable. That’s probably why the bullous pemphigoid has flared at this time. So what? It’s still not fair! I feel like a child hoping some adult will come along and make that bully go away. Just go away. And don’t come back!
Meanwhile, Pat has mostly kept her composure. She’s still working with the physical therapists. I admire her ability to accept what is happening.
Pat’s comments on Why Now? Pat has a Flare Up of her Auto-Immune Disease.
Ron to Pat: “What’s the worst thing about having bullous pemphigoid?
Pat: You can’t run away from it. I think I am coping with it better than last time. I’m not sure it will ever be gone.