March 22, 2016

Today, right now, at this particular moment it feels like there’s no other option for me than to be angry. To be completely and thoroughly pissed off with my whole situation and the utter hopelessness of it. I went to an informal retirement party last week for two people at work. Everyone who leaves us gets a plaque, with a certain piece of equipment on it. After giving it to the two retirees someone remarked that they’ll have to get one for me. It was meant in a very kind way, a way to acknowledge that I had been a part of the team and had “earned my stripes”. I refused of course, reiterating that I was coming back. I’ve always maintained that until I had answers there is no reason to give up on the life I’ve created and worked hard for but I’m starting to wonder if that is just a naïve and immature way to live. Am I just being pigheaded? The longer this drags on the less chance it seems that there could be an easy fix. The longer it takes to diagnose the rarer I fear it is, which means the less resources have gone into treatment.

I’m angry that my son really seemed to want to stay home today, and he seemed like he would really benefit from a day with his Mom, but I couldn’t do it. The fat guy is camping out on my chest, the house is a mess, I’m too emotionally and physically tired to treat my boy with the compassion and love that he needs today. I hate myself for it. I tried to make up for it of course; we went to the library and read books and played with the storybags. But what he really needed was more time with me and more of my energy, and I just wasn’t able to do it. Instead I’m saving my energy to go out to a ballet tonight. Selfish. I like to think I would do anything for him, but I prove that wrong time and time again.

I’m angry that I depend on my husband so much. We used to be partners, friends, lovers and that’s all different now. We hardly have fun together anymore. The love is there but without the sex it’s just not the same. It’s not as close. We are never one person anymore, always two separate people, connected in spirit still but never in body. I miss being closer to him than anyone else, sharing something that only we can share, seeing him vulnerable and losing all his inhibitions in the moment of climax. On the weekends we pretty much just divide and conquer, getting all those chores and “things” done, leaving room for my afternoon nap on Saturday and, since Saturday tires me out so much, my mid-morning nap on Sunday. And no matter how many things I get rid of or how empty I make our house and garage there still seems to be things to do that I can’t keep up with. Vaccuuming used to be something I just did quickly (the house is only 800 square feet) and now it’s a goal for the entire day.

How can I possibly not be angry with all of this? And the irony of course is that anger takes up more energy than being calm, so I’m screwing myself over just by feeling what I feel.

Medical update: Cardiologist appointment in 6 weeks, gastrointestinologist in 8, internalist in 13. Do I just keep waiting for these appointments or do I cough up the dough to go to Mayo Clinic and give that a try. No guarantees for either option.


Another Lost Post

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.