Ch.62 Pat Develops a Serious Auto-Immune Disorder
July, 2020.
Pat woke up about a month ago with liquid filled blisters on her arms and legs. They were both painful and itchy. The blisters quickly became more plentiful. Pat was miserable: unable to sleep, unable to quit scratching, in pain everywhere. Soon she was diagnosed with bullous pemphigoid, an auto-immune disorder. As Pat grew weaker because of this debilitating condition, her thinking deteriorated, and she more easily became confused. And then she fell in the shower and was unable to get back on her feet, necessitating a call for help and a visit to the emergency room.
BP, as it is nicknamed, occurs when the immune system mistakenly attacks tiny fibers that connect the epidermis with the dermis (the upper two layers of the skin). Although quite rare, its occurrence is associated with dementia and cerebrovascular diseases, according to several research reports.
Tonight, as I’m writing this essay, Pat is doing better. Her dermatologist, Dr. Galbraith, has put her on prednisone, a strong steroid, that almost immediately began tempering the immune system attack. However, this condition is chronic, often lasting several years with periodic flareups like the one Pat is currently enduring.
You might be wondering how well we are holding up. Pat seems to be doing a little better now that her medicine is lessening her pain. She has cried a few times, though, which she does rarely. Meanwhile, I am barely keeping myself together, especially now that the immediate crisis has abated, and I have time to think and feel. Watching Pat suffer is terrible; feeling helpless to alleviate her suffering is worse. Also, it’s particularly intimidating to realize that we’ll probably be dealing with this affliction for many months or years.
I have reached out for my emotional support system: my brother Don and my children and friends. I need them now, as does Pat.
Pat’s comments on Pat Develops a Serious Auto-Immune Disorder
I don’t recommend that anyone else gets this. This feels like it will last several years but it might just be periodic. Ron is amazing. He’s getting me through this even though it’s obviously painful to him and he has reached out to his emotional support system – his brothers, our children and friends.
Emotionally, it makes me feel worse about myself and I wonder if it will ever end. On the other hand, I feel with the good care I’m receiving from the doctors and the support of my family and friends it will get better.
I don’t know how long this will last—outside of the persistent pain I’m in I’m OK.
I really miss singing in the choir and going to the book club, but I can’t do those things right now. I wish I could.
ADDED NOTE: December, 2020. With the help of appropriate medicines, Pat has not had any breakouts in the five months since we wrote this essay. However, we can still see the shadows of her disease on her legs which remind us every day of this terrible affliction.