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...

It's been a while since I posted anything, you know, when you have a chronic illness & you feel good you take FULL ADVANTAGE of it! I have felt great lately. I wouldn't say "normal" but for me, really good. This weekend is my 7 year anniversary with CIDP, (I really should have celebrated with a new tattoo, maybe next month I will.) it's been a LONG 7 years but if I sit down & add everything up I'm better for it. I may have missed the opportunity of a lifetime when I got sick, but maybe, I dodged a bullet! We will never know (well, I might, but I'm not saying, I've got to learn to keep my mouth shut sometimes!) In the last 7 years I have learned that I don't have to be perfect. At least not "society" perfect, I am however ME perfect. No one else could be a better me, I know that sounds a bit conceited but it's true. No one else could pull of my unique personality, my quirks, my smartass mouth, my loyalty, my support for tho...

If there is one thing that I learned from the rehab "psycho" Dr it is that it is ok to take 5 minutes to feel "why me" "I can't" type of feelings. It is perfectly normal, especially in the first few months or year of being diagnosed. But to feel them for 5 minutes then focus on the more positive aspects. Believe me I know how hard it is to do that, but I know it can be done.  For instance I was just reading a book and the main character was running & thinking of how much she enjoys running. I hated to run in PE in school because it was something I HAD to do, not something I WANTED to do. When I wasn't in PE I was a fast runner and I really enjoyed it. I use to go to the track after school & run just because I liked it. I also ran around our neighborhood some, a "cross country" kind of thing. The one day in PE that I actually ran the mile we were required to instead of walking it with my friends my teacher was so mad because he s...

Its been a while since I posted anything. First I broke my foot, then I got sick, then internet problems. If you have read some of my other posts you know that I had a relapse of my CIDP symptoms begining in January and cresting (as I like to call it) in  February then I started to feel better. Well I was feeling really good April 25 and decided to open the gate when we were leaving one afternoon so that mom didn't have to do it. (I hadn't been driving or walking in the yard because I didn't feel strong enough) So I made it 2 steps & stepped on something and my foot rolled and I went down like a sack of taters. I was able to get up off the ground on my own, which I wouldn't have been able to do a few weeks earlier, and my foot hurt but not real bad so I cleaned the scrape on my knee & we left to go to town. When we got to walmart my foot was hurting more than when I had fallen but still, I could walk on it so, I did. When I got home it was screaming at me. I t...

I was having a Philosophical conversation with my dog earlier and I had an epiphany. (I know! Right! An epiphany! The whole talking to the dog thing is completely normal, but an epiphany, wow.)   I realized that to me a star is the symbol of God, not a cross. A cross is a symbol of Jesus, which I do believe is the only son of God, but a star is a symbol of God. Here are several reasons why, they are just now clicking together into my reasoning. 1)       A star is in the sky, or the Heavens you may say. 2)       My dog pointed out that his given name is Sirius and that Sirius, is a star located in the constellation Canis Major. (He is so intuitive!) The story of Orion & Sirius is interesting, I'll look it up and get back to ya with it, I don't remember it at the moment. 3)       Dog is God spelled backwards, coincidence, or divine intervention? 4)       My dog has he...

                  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...