My life with CIDP

"Thanksgiving is all over & mom put up the tree, looks like a merry Christmas, for everyone...including me!" Ok so any of you that know the "Bad little boy" Christmas song know that I changed the words some, but hey, it fits. (I love Ray Stevens version) This has been an interesting year. Let me begin with last Christmas. I was in a lot of pain because of an exacerbation (no, I didn't finally learn to spell that, I found it in a dictionary!) of my CIDP. I took an extra Lyrica for a few days so that my brother wouldn't know just how much pain I was in while we played video games for 3 days straight. I wasn't getting weak but my endurance level dropped significantly. For my birthday in January my mom, my "twin" & I went to universal studios to go to the Harry Potter section. It was a long walk from the car to where I could get a scooter & we had to stop & rest 3 or 4 times. I had to use my cane (which did not make me happy) beca...

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 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 ...