I went to my voice disorder doctor and it was AWFUL! I told him about my breath catching and the uncontrollable coughing when I try to talk. I explained that I do not have enough air to talk, that my neck and chest hurts when I say just a little and that I feel very, very weak from head to toes. He brushed it all aside and tried to teach me how to make my voice work anyways. I don’t think he understands myasthenia gravis at all 😦
It didn’t take too many words until I burst into tears. It hurt to talk!!! I kept choking. He had me do these exercises where I sniffed in 3 times instead of just breathing in a big, deep breath. That didn’t hurt as much….at least while I was there. The doc was trying to teach me how to suppress each urge to cough by blowing air both in and out to maintain a pressure in my throat. Every few minutes, I burst into tears again because it hurt my muscles so much. I was ecstatic when it was time to leave! I took 2 crummy pictures of flowers out front.
It was good timing. I had just enough minutes to take pics of the flower beds, then pull up next to the bus stop. See how gloomy it is? Nice planning by the bus folks. NOT! Even someone on foot has to go out into the road to go inside the shelter. And you sure can’t get in with a wheelchair!
The wind blew harder and harder in the 5 minutes before the bus came. I asked the bus driver to let me off at Trader Joe’s. He couldn’t understand me. I said library, then used sort of sign gestures to get him to understand I wanted to get off the stop before the library. That was reasonably close to TJ’s. I went in got eggs and Siracha bbq sauce and made it to the TRAX platform 2 minutes before the train rolled in. I almost didn’t make it. Like an idiot, I decided to try going down the sidewalk instead of in the parking lot. I had to move an orange cone blocking the sidewalk, then got to a honking huge white pick-up that had the nose overhanging the sidewalk. Not enough room between the wall and truck to get through. It was scary, but I managed to do a very tight turn and went back the way I came. Grrrrrrrr…..
Got off TRAX and went the few blocks home. Wind was way colder and whipping. I had been smart enough to wear my coat lining and gloves, but that darn damp wind before the storm was wicked.
I was starving! Ramen noodles don’t stick with a person like eggs and veggies do. I made breakfast for my lunch/supper. That was the hardest time EVER for me to cook eggs. I could not believe how much I hurt and how weak I was. I sunk into my comfy chair and took one bite and there was a knock at the door. Next thing I know, the door is being unlocked. It was the manager with a box that the mailman left with him. He just went right ahead and opened it with his knife!
A couple hours later I finally had to pee so bad that I could no longer postpone getting up. I took everything out of the box. Thank you kind reader! I really needed more Miralax, some sunglasses and especially some cherry juice! My gout still hurts a bit most days. There is no such thing as too many cherry products.
But…..Oh. My. Gosh! There is no part of me that is not screaming in agony. I thought maybe I was just sitting wrong or maybe not warming up. All that breathing and humming and forcing air through pursed lips at the doc office, put one heck of a hurt on me. Unless you have felt MG weakness, you probably can’t begin to understand….well, imagine having the worst case of the flu you could get. Every fiber of your being aches and hurts. Now multiply that by a really big number….and you are getting close to how I feel tonight. And my head is splitting. It feels like giant hands are crushing my skull 😦
I very quickly switched from hours long goose bumps and shivers, to burning up.
I waited a few hours, hoping to get smarter. It’s not going to happen, so I will publish this post and get it over with. It boggles my mind that all that forced breathing made most of the muscles in my body hurt…..and it still hurts at least as much 11 hours later.