When I got out of bed to make a trip to the bathroom in the middle of the night, I was barely conscious. My eyes would not stay open and I was unbelievably dizzy and limp. All night long, my muscles buzzed and quivered. I also drooled profusely. When I woke up this morning, my lips were swollen way out from my face and my entire head is swollen up. I feel like only about the top third of my lungs are breathing. I can barely reach out for my cup of water and take a swig. Oh!!!! I forgot! When I took my middle of the night meds, my eyes stayed closed. I tried prying them open, but they wouldn’t work. Each time I went to take a drink, I missed my mouth. I tried focusing real hard and I still could not find my lips to take a drink. That was creepy 😦
I feel very out of it and not here today. Again, my hands are heavily resting on the keyboard. I can barely move my fingers around enough to hit the right letters.
I have droopy eyes this morning. In my MG support groups, people have been urging me to go to the ER. Instead, I wasted the whole day waiting for my neuro or his staff to call or write. I sent the following email to the nurse and the office manager and asked them to give it to the neurologist.
I have been slipping downhill faster and faster. The 2 Medrol dosepacks from another doc kept me breathing and brought back my voice, but they have worn off now. I am weak and droopy and it’s getting harder to breathe. I can barely open my eyes and the fasciculations keep happening all over my face and down my throat.
Got any ideas? Since the last request for IVIg was denied by insurance, the Disability Law Center has asked for a hearing in front of an administrative law judge.
Here’s a picture of me this morning. As time goes by today, it feels like the left side of my face is trying to melt off. I am again weaker on my whole left side and my tongue and face are getting numb on that side.
I had a heck of a time trying to eat breakfast. My hands were so weak that the food shook off my fork on the way to my mouth. Then the food would just sit part way down my throat. Very early this morning, my eyelids were drooped totally closed. Each time I tried to drink water with my meds, I missed my mouth with the cup.
It’s all feeling creepy again 😦
Maybe I don’t sound scared enough????? Maybe I should have used other words????? I thought this was good enough.
Since I wrote, my diaphragm has become paralyzed a few times. My ribs hurt and my chest is sore, from trying to breathe. There were times I realized I was barely breathing and times I was breathing faster and faster. When I was in ICU, it freaked me out when the monitor kept dinging and said I was only breathing 6 times a minute. I was just too weak to breathe any more than that. Sigh…..
When I stand up to head towards the bathroom, I instantly get wicked bad short of breath. By the time I get back to my comfy chair, I am doubled over, bent forward and sucking in air as if my life depended on it :-p
Gee, what’s going to happen next? Will I get better or worse? Sigh…….soooooooooo tired………….