At some point of each day, my eyelid slams shut. It can last hours or days like that. It wouldn’t be all that big of a deal if it were just an eye thing. It’s momentous because it’s the most obvious indicator of how weak I am all over. And dang! I am weak!
I have not been eating meals in “forever”. My guts are not happy with much solid food. My idea of the perfect meal nowadays is Hawaiian ice with fresh raspberries. I eat a brat or 2 or a pb&j or maybe some spinach yogurt dip on bread with deli roast beef once a day, but usually have fruit a couple of times a day. Most food leaves me doubled over in pain. The days that I feel the best and am hyper, are the days I don’t eat.
This morning I decided to cook my old favorite…breakfast sausage, mushrooms, peppers, tomatoes scrambled into eggs with cheese. Notice no onions? I haven’t bought onions since May. I used to consume LOTS of onions. Now I cannot bear the thought of eating one. I kept putting them on my grocery list….and never bought more. I had some onions given to me and used them up, but decided no more.
While I was trying to cook a Rubbermaid storage container’s worth of the basic mix without eggs or cheese, you’d think I was doing some tough task. My legs kept giving out, each time I lifted my arms I came close to passing out, I was fumbling and dropping most everything I touched and my brain was more scrambled than the eggs. Then I sat down and ate. It was like a cannonball to the stomach.
As I relaxed in the coolness, I just got weaker and weaker. I decided to sew another hole in my wheelchair pouch. Who knew sewing was an Olympic sport??? I could barely move my arms to stitch. I was quivering and tremoring the whole time. Trying to put the pouch back on the chair arm probably looked like a comedy…but it sure didn’t feel like one. My arms were not much more than useless stumps.
My face is melting. The MG droop.
stupid, dumb, ever hopeful, I figured I should go to the park and hang out under the trees. I got as far as in front of my apartment and accidentally drove off the sidewalk. I had to unbuckle, get up and push. I was shaking like my own personal earthquake. I sat in the chair and gasped for air a good 5 minutes. It was only then that my eye slammed totally closed. By the time I was strong enough to take a picture, it was partly open. But…most of my ability to see was shot. It was all double and blurry. I struggled to drive the chair back inside.
I stood in a cold shower and then plunked myself in my chair, with my nifty new fan pointed at me. That helped get me over the worst of it. But…I sure feel like myasthenic crisis might be in my near future. If I go to the hospital, am denied IVIg and die….I want you folks to sue the crap out of the state of Utah Medicaid idiots! I would not have gotten this bad with regular IVIg….and I would not have a steroid moon face or high blood sugar. This whole thing is, indeed….stupid!
This summer there have been many, many announcements of the death of MG’ers. It has been a tough summer for us folks. It seems like way more people than usual are in crisis at any one time. And the misery of people not in the hospital and not bad enough to die is through the roof 😦 I hate following the crowd, but I don’t have much choice in the matter. I feel close to body failure. Three weeks until I see the new neuro. Since she trained at the U, will she be a carbon copy of the neuros there? If so, I am soooooo screwed 😦
These are right outside my bedroom window. I’m allergic to all sorts of pollen. I suspect these aren’t helping my allergies. I think they are beautiful! Sigh….
I’m not sure what to do to get stronger. Once I dry out, maybe I will go lie down with the good old CPAP and oxygen. My lungs are weak.