My life with CIDP

                  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...

Ok so getting back on track with my history I am now on to my next fall, ER visit, hospital stay. Oh what fun it was...NOT. I had come home from the stay for the blood clot Wednesday. I kept myself moving, I was really tired but planned to go back to work on Monday so I didn't want to get lazy. I was still staying with mom & dad and mom & I decided to go pick up a pizza late Saturday afternoon. She would drive of course, but I got to get out and get some fresh air. As I took a step out the back door I went down like a sack of taters. I felt it coming and there was nothing I could do, just go down and struggle to get back up after. I cried instead, then had them help get me up and to a chair. I called Dr Greasy, but he wasn't on call, one of his partners was, Dr Dick. When Dr Dick called me back he proceeded to tell me that GBS does not relapse and it was ALL IN MY HEAD. There was nothing wrong with me. Not to go to the ER because he would just send me home. So I hung ...

So I had a spinal tap that said I had high proteins that confirmed to the Dr that I had GBS. I had a central line put in (2 times first one didn't work) and my first oil change done. We did an oil change every other day and by the time we got to the last one I just wanted to go home. I convinced the Dr to let me out and I would come back as an outpatient for the last treatment on Monday and I would see him in his office as soon as he wanted me. (I don't remember how soon that was) So instead of going back to my home my parents wanted me to come stay with them till I was better because if something happened I would be alone if my brother was working (he was on call with the RR 24/7/365) so I slept in their room and they slept in my old room on a blow up mattress (with a slow leak). I visited with my cats and slept in "my own bed" and went back to the hospital on Monday for my last treatment and to have the line removed. The treatment went fine and Judy called the Dr ...