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 ...

The morning of September 9, 2005 I was taken to have a spinal tap done. a few hours later Dr Quack came in and said that I had elevated proteins in my spinal fluid which indicated that I had GBS. I asked what GBS was and he just gave me vague answers. Like your immune system is out of whack and is attacking your nervous system which is making you so weak. We are going to do plasma pheresis (or plasma exchange as some of you know it) (My family called it an oil change.) He and the nurses assured me that I would have a full recovery in 3 weeks and could go back to work in 2 weeks. I thought COOL! FULL RECOVERY in 3 weeks, awesome. I had just started to date this great guy and if there was a chance at a full recovery I had a chance at him. (wink wink) That after noon (this was a Friday) Dr. Dork, a surgeon, came by my room to tell me that he would be putting a central line in my neck in the morning (Saturday) for the plasma pheresis team to run the treatment...

Before I get into the diagnosis I MUST tell you about the funniest time I fell, it wasn't funny at the time but looking back it had to be spectacular. I had resorted to taking my book and purse to my car in the morning and going back into the house for my lunch and drink because it was too much to carry them all at the same time. So I was going back up the stairs of the deck (which had no rails) and my legs gave way and I took a nose dive off the edge of the deck and did a face plant into the dirt! I had on a skirt which was now over my head, my underwear got caught on the box hedge, my shirt had slid up over my chest and my face was about 6 inches from a fire ant hill! OMG what a sight I had to have been. I rolled over, adjusted my clothes and laid on the ground fuming, I knew I couldn't get up and I knew nothing was broken. No one was home and my cell phone was in my purse in the car 50 feet from me. Luckily the man who lived across the street was out walking ...