My life with CIDP

It's been a while since I posted anything about my "history" I left off when I got out of rehab. I really don't like talking about how horrifying the experience was there. Again, not the nursing staff or the regular Doctors or the therapists, I mean that psychologist. Still to this day the mere hint of that man sets my family off on a tirade worthy of Henry the VIII. So now that I am feeling exceptionally stable let me dig back into some of the hard times. Yeah, I guess I'm a masochist! So let me begin with my exit from rehab. After the social worker decided I needed to go to a nursing home (and had made arrangements for me to be taken the next day) I was freaked out that everyone was giving up on me and sending me off to die. Yes, I know that was a bit over the top, but like I said, Gramma died a year earlier in a nursing home because no one was capable of taking care of her. She could still walk, with assistance, but I couldn't. She could feed herself, I w...

Today's post comes to me from a conversation I had with someone on Facebook. Recently in the CIDP group I'm a member of, a post was made asking about people with CIDP that have had to rely on a wheelchair. I posted that I was in a chair for roughly 2 years but have been walking for the last 5. A woman named Marjory (I hope I spelled that right) sent me a message asking what type of exercises I did that helped me be able to walk again. I honestly can't remember any specific exercises I just know most of what I did I did on my own. Insurance didn't pay for much physical therapy & Lord knows I couldn't afford a gym membership. The most therapy I had was in rehab & that was a very difficult time for me mentally so it really wasn't a lot of help. I got the basics, flex your muscles as much as you can as often as you can. Make them remember how to work. Mostly rehab taught me how to use a slide board, which at the time didn't help me mentally, because to...

                  Ok, back to my journey with CIDP. I spent 3 horrifying weeks in hospital “B” and from there they sent me to rehab at Tampa General Hospital. I could not stand, let alone walk. I could just barley roll over in bed and couldn’t raise my arms high enough to feed myself when I got to rehab, but they said I’d be walking by the time I left so I was optimistic…what a letdown that was. Not because they did anything wrong, per say, but things could have been handled differently.                 By then end of week 1 I was sitting up and dressing and feeding myself. I was exhausted afterwards and needed to take another nap but that’s normal, or so I’m told. I had an hour of occupational therapy (OT) first then an hour of physical therapy (PT) then lunch then more PT then the rest of the day was “free time”. I was visite...