My life with CIDP

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...

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 ...

I just wanted to deviate from my history for a quick post and give an update on how I am currently doing. I was feeling good in 2009 and we (my Dr & I, not just her) decided to make some changes to my medications, some were good and some not so much.  I know you're probably thinking why change when you felt good? But as people who are on immuno suppressants know, they are bad for you in the long run so the lower the dose the "better" and if you can eventually get off them its even better. I was on 200mg of Cyclosporine daily and like I said I was feeling good, I didn't sleep much but I was ok with that but I developed a tremor in my left hand that I just couldn't take anymore. I was on Propronolol for it & it improved some but after a while it got bad again. So we decreased the Cyclosporine very slowly. like 25mg every 2 weeks so that we weren't giving my system a huge shock. If you have any kind of chronic illness you should know not to shock your sy...

This is a little out of order in my trying to give a 6 year history but needs to be said and its too long to add to another post. When things first started happening to me no one ever said "you should go to a Dr." When I fell the first time at the races we all thought I had just fell because I was walking along the top of the bleachers and not where I should have been walking. When I fell in the parking lot I had on high healed sandals so what, I fell. Yes I had cut my leg and didn't feel it but, hey it didn't hurt. Who goes to the Dr because they cut their leg, unless its a huge gash that needs stitches?  but I did go to chiropractor when my fingers went numb and he said I had pinched a nerve. When I took a nose dive off the porch I went to the Dr and they said I was fine, continue with chiropractor treatments.           Growing up in my family we didn't go to the Dr for every little thing. If you had a cold you stayed home from sch...

In May of 2005 I was a healthy happy 30 year old. Single with no kids, my life was great, maybe that was the real trigger! I got the flu some time in mid May, don't remember the exact dates, just being sick and deluding myself into thinking it was just "my allergies". 4th of July weekend I went to visit a friend for the weekend. We went to a local race track on Saturday night to watch the races and fireworks. At some point that night I was walking along a row of bleachers and twisted my ankle and fell. (Yeah I looked like a sloppy drunk, but I don't drink.) I thought nothing of it because I'm a klutz. I also got the flu again that weekend. Then in mid August I fell in the parking lot at work. I wore heels every day to work and, again... I'm a klutz. So I thought nothing of my falling other than me being me. When I fell I went down on my right knee and the palms of my hands. My hands were a little red but I just brushed them off and got in my car ...