At 3 AM, Rhett woke me up as he searched for his various electronics so he could charge them up before school.
I remember being soaked in night sweats each time I turned in my sleep. When I got up, I felt better than usual for five minutes 🙂
Then I started coughing. That turned into classic MG choking. Now I am back to being soooooo weak. The more I choked, the more my spine squished and soon all the nerves that have been giving me trouble were pinched again. I didn’t care that it was 45 minutes early…I took my Mestinon and Motrin.
Last night Rhett was hopping mad about my lack of IVIg. He thinks not getting it is killing me. I asked him lots of questions about my past infusions. His answers helped me. He was able to articulate the differences before and after IVIg. He used to have a love-hate relationship with our monthly trip across Lake Champlain on the ferry and the all day infusion.
Nobody I know understands why I can’t get IVIg now. Me, either. Utah would basically rather see me in agony than spend the money. If I die…bonus for them.
I honestly do NOT want to stay here. The only reason Rhett wants to stay is for blind school. The whole moving here to be close to his relatives has been a bust.
I wish I could live close enough to Heather to babysit.
I feel REALLY frustrated right now. Part of me is ready to give up and die and part of me is still fiesty!