July 20, 2015

Another appointment down, and more questions gained. This time it was physio. How much do I tell her? What does she need to know? What’s relevant and what isn’t? She had the report from Dr. Fink, the rehab dr. It said that my results for MG were negative, no surprise there of course. The surprise came when I saw that it only mentioned the AchR test. Was I tested for the MusK antibody? What about this anit-gen I read about? One of the most destructive parts of this whole ordeal, emotionally, is the constant question of what’s going on; the constant fear that I’m being thought of as a psychosomatic case; the fear that all these health care providers might be thinking I’m wasting their time and resources. It also scares me that, if they don’t think I have MG, then why are they not really looking for something else? What if I have something else that could be treated right now? What if I could be back at work tomorrow but I‘m just not being taken seriously enough?

I’m scared.

I waddled back to my car, deciding I was okay to drive and not needing my husband to pick me up. When I got home I realized that I really, really wanted to have homemade egg mcmuffins for lunch. It’s been a few days since I’ve actually wanted to eat something, subsiding only on yogurt and Boosts, so I decided to make it happen. I knew I could get gluten-free English muffins at the grocery store, but did I have enough stamina left to go buy them? I hummed and hawed about it for almost 20minutes before deciding it was worth a shot.

I parked in the handicap spot and took my placard from the glove box and hung it from the rearview mirror. I always feel so broken everytime I have to use it. To hide my shame about it I call it my “rockstar parking pass” to friends and family, but I secretly hate that thing. When I got through the doors I decided that since I was going through all this effort I might as well buy good cheese, maybe one that’s pre-sliced so I don’t have to do that at least. Fancy cheese was three aisles away from the door. 3 long, long aisles away but I managed to get some nice jalepeno havarti.  I shuffled my feet down the aisles at the grocery store, upset that the “hippy aisle”, as my husband and I affectionately call it, was so far away from the door. On my way to get the celiac safe English muffins I was passed by a woman in her 70’s. Sometimes it’s the little things that can just destroy your sense of self-worth. An 8 year old boy stared at me as I inched along the grocery store, no doubt wondering what was wrong with me. Of course, I’m wondering the same thing. It feels like deep down inside there’s a part of me that just seems ready to burst into a run, like if she could just get freed she’d never stop running. She could just cast off the shadow of this body that surrounds her, and never look back. Part of me feels like I have the power to let her out and part of me knows I have no power at all. I’m so lost right now.

Today was also the first day since all this started that I had a drink. It was literally a quarter of an ounce of brandy in a cup of coffee but it affected me nonetheless. It was nice to feel that burning sensation as it went down my throat but the weakness and confusion that came with it wasn’t worth it at all.

I probably shouldn’t have started this blog on such a negative feeling day.

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