March 9, 2016
It’s impossible to describe how frustrated I am. My life is paused and I don’t know when it’ll play again, if it ever does. The longer this takes the less hope I have that it will be a treatable condition. This weekend my husband and I took our son to the library for storytime. Afterwards, when he was playing with the other children I went upstairs to the medical reference books. Rows and rows of books about how to deal with cancer dwarfed the half a row dedicated to autoimmune disease. The only book that I thought could be helpful was an encyclopedia of autoimmune diseases. I searched heart, fatigue, weakness, but nothing and everything seemed a possibility. I read the pages about Addison’s disease and hypothyroidism, learning nothing new. I didn’t bother with Celiac disease. I looked up Polyglandular Autoimmune Syndrome Type 2 and learned that it affects approximately 10 to 15 per million. Per MILLION. That translates into approximately 600 people in all of Canada. No wonder the doctors don’t know what to do with me. I may be the only one they ever encounter in their career.
I’m feeling desperate. My family doctor has no idea what to do with me, and has admitted as much. I’ve asked to be referred to a cardiologist but haven’t heard anything back yet. He said we could try sending me back to the internalist I saw at the hospital. I got a letter from her office saying she’s referred me to her colleague. When I googled him I saw he graduated in 2015. The pessimistic part of me feels like she just doesn’t want to deal with me, but the optimistic side that somehow keeps holding on thinks that maybe the fresh education will be a good thing, as some autoimmune diseases are becoming more understood with new data. POTS specifically, which somedays I think I have and somedays I don’t. But the appointment isn’t for almost 4 months! How can I just keep waiting and waiting for nothing to happen?
Some days I’m sure I’m dying. I’ve made my funeral wishes known. Part of my minimalism is just getting rid of stuff I don’t want my husband and son to have to deal with after I’m gone. It just seems practical. I’ve solidly become an atheist and do not believe in heaven, hell or a God. A large part of me still wants to believe in a soul, but I`m not sure if I really can anymore. I have no idea what happens after this life, if anything at all. I don’t want to die. I want my life back.
TTThhhis is all III can write for now. IIImmm having difficulties typing and keep having to go bavck and erase kletters that ii get wrong or double press the keys. YYYet anogther annpyance of being weak. TTTime for my daily nap.