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 healed my family. We had lost my Grandma and my other dog in the year before we got him and there

                  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 visited by the psychology department and they have a “recreational therapy team” that also visits patients and tries to get them to hang out with other patients

                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

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

Now on to my DVT, fancy name for a blood clot. I had been out of the hospital about a week, give or take a few days, and my right arm seemed a little swollen on Saturday night. I hadn't been told to watch out for anything when I was released from the hospital. My doctors had told me that the plasma pheresis would remove my clotting factors so I had no reason to suspect that one would form. On Sunday morning I woke up and my right arm was so swollen my bracelet was making an indention. My mom took me to the ER and after hours of waiting a sonogram was done (by a girl I graduated with that my brother had gone out with, that I didn't particularly like, but she was professional so it was ok) and it was diagnosed that I had a DVT, deep vein thrombosis. Just a fancy way of saying a blood clot. I'm sure there is technically a difference, but honestly blood has clotted in your veins. I'm just sayin' if you aren't a doctor its the same thing. So I was admitted again, g

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 school & slept till you fe

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

It has come to my attention that I haven't given a description of the pain I experience. Mostly because...well it hurts too much.    When your nerves demylenate (after all these years I really should learn to spell that because spell check has no suggestions) your nerves are basically fraying like an electrical cord. If they are looked at under a biopsy they tell me that they look like onion layers from being ripped apart by our own immune systems. The exposed nerve is hyper sensitive and for me the slightest touch hurts like hell. Not everyone experiences the pain the same way. Mine burns, others stab, others say they tingle and are numb. To me the word "numb" means you don't feel any pain, numb would be a Godsend. But I get the idea of numb from the tingling because my hands & feet tingle in the beginning, then they burn. Up until two years ago when Doctors or nurses asked me to describe the pain I had trouble getting across just how badly I hurt.      

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. He said he would be knockin

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