Valium makes it possible for me to sleep, so that’s about the only thing I am good for. My brain cells are very much on vacation. I had two naps today. I am still tired. It’s better than being in the horrific pain I WAS in!

Myasthenia gravis is not impressed with Valium. It makes gravity be turned up. I feel like I weigh a bazillion pounds. If I don’t stop swelling up, I am going to weigh that much! When I wake up, I have to peel myself off the mattress. It’s a humongous struggle to get up from either lying down or sitting. I was hoping I might get used to being a druggie so the effect on MG would lessen. When these pills are used up, I hope my hip and leg are better so I can do without the drugs. But…it sure has been WONDERFUL to be in less pain! Interesting that Valium works better than narcotics on my pain. I think my muscles have been spasming way too long. Thank goodness for this intervention.

Oh, speaking of interventions, the care coordinator wrote twice today. She outright lied 😕 Claimed she never said I was part of any mental health program. Sigh… I am putting her on hold until I talk to my regular counselor about my concerns. The whole reason I went to these people was to be treated well by doctors. Sadly, mental issues seem to be a reason to discount valid physical problems. Instead of educating the ER doc who told me I had Munchausens, now a doctor that didn’t think I was crazy is wondering if I am, and why I need a keeper! I asked this woman NOT to come to my neurologist appointment. A lot is riding on this appointment. If this doctor doesn’t help me, I need to seriously think about fleeing Utah so I can go back to getting regular IVIgs. Sooooo many of my problems disappear with IVIg. I don’t want to keep being this sick and disabled when there is a known treatment that helps me.

The chills and fever cycles are getting more intense. Again 😕 I thought I was freezing tonight and then I went out to get my mail. Then I realized my skin was hot. Duh. Tricks me all the time. I look like heck. I look old and sick. Maybe I am trying to fight off all the community germs in this building. An awful lot of people are sick or just getting over something. It seems to wipe out folks for a week or more.

I learned something new about Facebook. I didn’t know I still had an “other” folder for messages while using my cellphone. I found it today at the bottom of a page that required 2 clicks. Now I feel really bad about all the messages I missed in the last year. Some were very heartfelt. Sorry. I only use FB to be on support groups and see what my daughter is doing. I never liked the whole friending thing. My newsfeed is mostly national parks and random photographers. I hide most people. I would rather exchange emails if folks have something to say.