August 5, 2015
Sometimes to go forwards you have to go backwards I guess. The neurologist now says I do NOT have Myasthenia Gravis, but what I do have is still a mystery. The plan now is to ween me off the Mestinon and send me to another city 8 hours away to see a team of neuro muscular specialists. I was on 8 pills a day and I’m now on 6, dropping one pill every 4 days. It’s so hard to say if I notice a difference or not since my symptoms were so variable before. The one thing I may be able to say is that my breathing is better, even though the pressure on my chest is worse. I have a lot of fear concerning going off the medication. At least I know somewhat what I can expect day to day right now, I have no idea what to expect off the pill. I doubt it’ll be as bad as it was in the hospital, since my thyroid and Addison’s disease weren’t well controlled, and Celiac wasn’t even discovered yet, but I’m still very scared of increased weakness. At least now I’m able to take care of my family and my house. A wonderful friend came over yesterday and helped me make some meals to put in the freezer. It really makes me worry less knowing that I’ve got 7 healthy, balanced, gluten free meals ready to go for a rough or busy day. We’ve already gotten multiple offers of babysitting for when we do go to the city. My Mom has offered to fly here again. I’m truly blessed by the support around me.
The purge of the house continues and with each thing gone I feel more free. I love seeing empty shelves, empty boxes and half empty closets. I’ve found a couple things I forgot about too, and gave them a rightful place where I can look at them and get joy.
My disability was approved. It was a very bittersweet feeling. Everyone I tell has the same reaction: “That’s great!”, but it doesn’t feel great to me at all. I’m certainly glad not to have to worry about money, and now I can plan a bit more for the next few months, but at the same time I now have to really admit that I am, in essence, disabled. That is a very bitter pill to swallow. I wasn’t even questioned and my doctor wasn’t contacted to explain what he put on the form. I’m very clearly unable to do my job. None of that feels great to me.