Thank yall..
Juanitad- when my symptoms get bad (last year when I got admitted and this past week - though I am better by a lot now).. i feel like I have an elephant sitting my chest, its unbearable!! When I was admitted last year, I felt like I coiudln't get air in or out.., it was really anxiety provoking.. I kept thinking it was in my head.. and HOPED it was in my head!!! But unfortunately wasn't..

Annie- I was afraid I was looking at a trip to the hospital.. My breathing was getting worse and all my muscles floppy.. like a year ago, jello fingers and knees etc.. My eyelids were both totally in my vision, so I have to tilt my head back... I slept a bunch and rested yesterday and last night and seem to be MUCH better.. thank goodness.. though still floppier than I prefer! I have IVIG on Monday.. I think I have to stick to every 2 weeks (we have been trying to stretch it out to every 3.. but that obviously isnt' working!!) It was nice having extra days each month the last several months, ivig every 2 weeks is pretty time intensive when I have to be infused so slowly.. but hey, being intubated in the hospital is more so.. soooo for now I'm just thankful something works!!