My life with CIDP

It's been a while since I posted anything about my "history" I left off when I got out of rehab. I really don't like talking about how horrifying the experience was there. Again, not the nursing staff or the regular Doctors or the therapists, I mean that psychologist. Still to this day the mere hint of that man sets my family off on a tirade worthy of Henry the VIII. So now that I am feeling exceptionally stable let me dig back into some of the hard times. Yeah, I guess I'm a masochist! So let me begin with my exit from rehab. After the social worker decided I needed to go to a nursing home (and had made arrangements for me to be taken the next day) I was freaked out that everyone was giving up on me and sending me off to die. Yes, I know that was a bit over the top, but like I said, Gramma died a year earlier in a nursing home because no one was capable of taking care of her. She could still walk, with assistance, but I couldn't. She could feed herself, I w

"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

                Now on to my 3 besties, Crystal, Laura & Maribel. Each one of them has a special place in my heart. I would be lost without any of the three of them no matter how little I may see or talk to them with their busy schedules. I love them equally (no fightin’ girls) but I’ve known Crystal longer so she is first up on the block.                 I met Crystal (AKA Sunshine) in the spring/summer of 2001. She was this bubbly vibrant ray of sunshine in an otherwise cloudy pool of employee prospects. She wasn’t even looking for a job at the time, she came in to the store I managed looking for something I was out of stock on at the time, it took me a few months to convince her she wanted to work for me. We became close friends fast and stayed close way beyond either of us working for that wretched company. She was the best dang employee I had, ever, and she made work fun. We use to pick on this one other girl who worked for me, we were the mean girls from high school, but th

I have SO MANY pictures of him, this one is one of my favorites.                This was an IVIG week so I've fallen behind on my posts & caatching up with everyone on facebook. I get 4 days every 3 weeks but I seem to be doing well so far.  Last week I talked about my family. This week it’s my dog. It should be my friends but I just have to rave like a lunatic about him. He is the light of my life and as I write this he is sitting in HIS chair watching me. He is a mama's boy & we suffer from seperation anxiety some days today he is just in cuddle mode.                 His legal name is Sirius Black, yes I’m a Potter geek. I was reading the series when I got sick and I was on book 4 when I got him. When I read book 3 and Sirius asks Harry to live with him I felt like Harry finally saw hope in his future for the first time in his life and when I was reading that book I didn’t see any hope in my future. The light at the end of the tunnel everyone kept talking abou

               I was polishing my nails earlier (pretty sparkly blue J ) and it got me thinking about all the little things we take for granted, i.e. polishing your nails, brushing your hair or teeth, um, how to put this delicately…cleaning yourself after relieving yourself, you get my point. All things we do without thinking about it. It’s like breating and I wanted to write about my experiences with things like that but if I put those things first I wouldn’t mention my family & friends. Not that I take them for granted (I don’t think) but for me they are natural, just like breathing. So in part 1 of this blog I’m going to focus on my family.                 I was born in northern New York, a teeny tiny town in the middle of the Adirondack Mountains. I had to ride my bike 3 miles up the road to see my BFF Suzie to find someone to play with other than my brother. He was a teen by the time I was old enough to ride that far alone, before that I played with him & the neighbor bo