Reply To: Isolation
I know what you are feeling. My husband is the one that was first GBS then now it it CIPD. He was just in again (hospital) in our area what we KNOW it was a set back, they put him into observation for 36 hours and off he went , HOME.
Isolation feeling? YES for him and I. My fellow co-workers don’t understand nor does anyone else and I am dealing with my own health issues, not anything like yours, I feel last year, broke my knee, still having problems, was doing GREAT, till my check up with ortho, and that doc screwed up everything. Trying and praying to start a new job here but having a problem standing and walking.
It seems like when this happened to him, he got hacked on the computer. 22 former patients of this hospital got hit, bank accounts, investment and more. Not all was recovered.
He too is having more and more problems, we are going to Tampa NEXT Tuesday to our other nuero doc WHO said it is CIDP not GBS. She seems to know what is going on.
Are you getting monthly infusions? This is one thing our local nuero doc stated about.
If this foundation does not provide a site that is private to those WHO HAVE THE DISEASE them I can stand up and form a blog just for us. You have my e-mail, keep in touch. Where are you located?
They offer liasons in or around the area, mine was worthless! I am hearing that this disease is on the rise.
Hang in there, if they do not have you on an HAPPY PILLS (NOT PROZAC), get on one. He was on one that worked miracles at the hospital but it dried his mouth out so he quit it, they tried 2 others and he threw them out. One thing I am going to ask about next week in Tampa. He does need something, he is also on disability but does FORCE himself to work in the yard, but he pays dearly for it. His attitude is “this is not going to get me” but everyday it is something new that pops up and we don’t know if it is a false alarm or the disease. No TRAINING AT ALL!
Hugs to you, sorry doing this without my glasses….not a good thing! LOL