Last night I spend most of the night awake feeling itchy. My sleep meds didn't help at all, and I realized this morning I've been taking my Prednisone at the wrong time of day. I reread all the prescription med info and saw somewhere in the middle, not on the bottle that I'm supposed to take it before 9 am. I've been taking it at night so hopefully taking it at the right time will help me sleep better.
I called my derm again this morning, to let her know the rash is still getting worse, and that I was worried about stepping down the dose. So she sent me in for bloodwork today to see what my starting levels are with an eye to changing my meds once we have the confirmation of the results. I'll be on the 4 a day until Monday and then call her.
I also decided I needed to set up a Health Notebook for myself to keep my medical records and prescription information and Contact information in one place so I can share my comprehensive current health information with all my health professionals. So I put my prescriptions papers in a binder, and wrote down the vital health info- meds I'm taking, disorders I'm being treated for, OTC meds and vitamins I'm using, and contact info in there with all my health care providers and family members. I will take it with me whenever I leave the house just in case something happens to me. That way if I end up having to go to the hospital, or to a new Dr for something it's all with me. I'm going to add all my health records when I get copies. I got copies from my dermatologist today when I picked up my lab work papers.
I figured out a creative way to secure my sterile gauze over the broken blisers. Instead of using the extremely expensive roll of itchy gauze to wrap my arms, I went out and bought some knee high panty hose and cut the toes off. They are $5 a box of 20, and I'll throw them out after each use, vs $8 a box of 5 gauze rolls. The sterile gauze pads with polysporin on my wounds keeps them protected from germs, but this holds them on without tape that irritates my skin and causes problems with places to stick. And it stays on! I just gently pulled them over the gauze patches and put the cuff part near my wrists. I don't even feel them! Heaven after the itchy nightmare of the last few days. Nothing like having very sensitive skin and wearing what feels like a "hair shirt"
My grandma would smile since she was an inventor and used to think outside the box like this all the time.
Today I got to thinking that the best way of dealing for this in a constructive way is to do what I love to do best. Become an expert on the subject. I am thinking of writing a book- about Automimmune disorders and the connection to autism. Every mom of a spectrum child I know that I can think of has some form of autoimmune disorder. Women who do have an autoimmune disorder are 9 times more likely to have a child on the autism spectrum. There must be a genetic thing going on there. It also tells me that autism is most likely autoimmune in origin, or at least making these babies more vulnerable to environmental insult. This idea also sprang up because in looking for info on my disorder there aren't any books out there!! It's so rare it's only in medical journals and short descriptions on websites. If I researched and wrote a book, I could include a large section on BP and other Pemphigus/pemphigoid disorders so that people newly diagnosed could read about others experiences and find out what others are doing.