Villain

I had one of those helpless moments again today. As I lay on the platform awaiting my radiation treatment, I looked up at the “clouds” and realized I could no longer see the one that looked like a llama. It was my standard, the comforting cloud animal that took my mind away for just a brief moment. But when I looked up, it was all blurry and crossed out and I began to cry (although not too hard, otherwise the machine would shut off). I cried because it was another thing I lost. Something so benign as a fake ceiling cloud, but I’m tired of losing stuff. My vision is kind of everything right now and when I can’t walk without holding an arm or bracing myself against a wall, I feel like the pit has gotten even deeper. 

This is how I walk around, straining to keep one eye closed. 

Afterwards we stopped by the pharmacy to get the medicine that should help with the vision problem, which is really an eye muscle problem. While I was there, I picked up a proper eye patch. Much more comfortable, but still very strange to walk around in public like some sort of villain. I even look like a villain with my black cat! I’ve become the actual villain in my life story right now, terrorizing myself at every turn. Not on purpose of course. I know I’m not to blame, that it’s happening to me…or maybe for me. 

I wore the patch to the gastroenterologist’s office. I explained to him the potential diagnosis of myasthenia gravis. He still didn’t fully see the connection with gastroparesis and asked if anyone has mentioned MS as a possibility. Hopefully the upcoming tests will give a clearer picture, including the bloodwork I did today and the MRI coming soon. He was also very concerned about my weight loss, since I lost 16 pounds since January 6, and he said that if I lost any more weight, I will need to do a special nutrition infusion in the hospital. I reassured him that I’m working very hard on trying to consume more calories, that I haven’t lost any weight since last week, and that I’m working with several nutritionists to help me. Today in fact, I ate two solid meals! This is a huge accomplishment!

I’m truly grateful to everyone who has reached out to me. Your prayers and close connection are keeping me afloat in the midst of my confusion, pain, and frustration. My sadness runs very deep sometimes, but somehow I manage to get back up again. So thank you - for sustaining me - I love you!