My life with CIDP

 In January this year my insurance company decided to change my most vital medications to generics. It was an epic failure. First off I was taken off Gamunex C and put onto Priovgen. Same dose 60g a day for two days every three weeks. I have been on Gamunex since 2010 and other than shifting the dosage to find a balance that worked for me I haven't had any problems. My labs always come back perfect. We started out with 50g a day for five days every six weeks then over the next few years as I stabilized it was changed to 55g a day for four days every three weeks. Then it was changed to 55g a day for three days every three weeks and then last year to 60g a day for two days. This January 2020 I was changed to privogen from gamunex. Same dose as the previous year of 60g a day for two days every three weeks. I didn't notice the difference right away but over time I noticed that I wasn't getting any energy boost like I did with Gamunex. I started getting horrible leg pain in the ...

       I know it's been quite a few years since I blogged but I'm going to try to be better about it. I have gone through loss & depression in the last six years but I have also had some triumphs & happiness.       I'll give a brief 2015 rundown. I turned 40 in January. In April I went to the BBW beach bash with a friend of mine. I met some amazing people and had a lot of fun. I got out of my comfort zone and did a photoshoot with a photographer while I was there and actually had some great pics taken. I felt the closest to "normal" as I had in ten years at that point. I met a guy that I hit it off really well with and we remain friends now, five years later. I met my ex-bf there as well. It lasted almost a year and ended badly.           2016     Most of 2016 was good. I broke up with the loser bf in September of that year then on November 19, 2016 I lost my dad suddenly to a massive heart attack. T...

Hey ya'll, Happy New Year! We survived another Holiday season.    :) I'm feeling great & I hope ya'll are too. Of course here in Florida the weather was beautiful for Christmas. Christmas eve my brother & mom & I went to see The Hobbit. (highly recommend) and Christmas day all 4 of us went to see American Hustle (highly recommend that also) While standing in line on Christmas day I realized that I was completely comfortable. I wasn't panicked by the crowd like I would have been if I had gone to see Catching Fire on opening night like my friends did. I wasn't afraid that someone was going to run by & bump into me throwing me off balance & winding up face first on the theater floor. I wasn't panicked by the stairs & when we left I didn't have to hold everyone up like I usually do. And I wasn't wearing my trademark tennis shoes, I had on boots with a heel! Now granted the boots have a rubber sole with a chunky 1" heel but sti...

Hey ya'll, Just a quick post on my progress since my last post. Nursing My new nurse is great, I miss my Donna but she became family so we still talk & we're planning lunch in the next few weeks and if all else fails we are going to Downtown Disney on my birthday in January so I'll get the chance to see her then. My new nurse CC wants to go with me & the girls to karaoke. That will probably be around my birthday too. CC will fit in with my twins very well, should be a fun night. I'll be exhausted for 3 days after but it's worth it to have some normal girl time in my life. I even got a cute new sweater dress & boots to wear. (hey it's my birthday party & I deserve to look awesome!) Pharmacy Still a bit miffed with my pharmacy but won't go into specifics. Lets just say liar liar pants on fire! But we have come to an agreement, they won't talk to me unless absolutely necessary & I won't talk to them unless hell has indeed froze...

SO much has happened since my last post, well this year actually and a lot of it is CIDP related so I should have been blogging about it but, well, I get distracted easily. To begin I've pretty much lost one of my best friends over something stupid. I'll just say I feel that she chose a blood feud over her friendship with me, she probably thinks I chose to be friends with her sworn enemy rather than her. Honestly, I needed help with something & went to the person I knew could help me. Plain & simple. So moving on. (sadly, the financial problems are because of CIDP, so you could say CIDP has caused me to lose ANOTHER friend...) I'll list my problems in my life with CIDP then I'll list the good things so I end on a happy note. I lost my favorite nurse last month. Not because she moved, retired, pissed me off or anything. I lost her because another person had a vendetta against her & moved heaven & hell to get her fired! I'm not going into specifics, ...

Its been an exciting 2 months for me. I went out with the girls for my twin's birthday. We went to the rising star in Orlando at city walk. Its a karaoke bar, I'm not a singer but my twin is & she sang her heart out with a live band & back up singers. It was great. Nice to get out like a normal human for a change. Pics from dinner that night. Top is me & twin (I'm the blonde) Bottom twin, me, peach & jj The other exciting event is that Memorial day I got a bike & have been able to ride it! Memorial day I only went around my house 1 time. It was a lot harder than I thought it was going to be. I got a single speed cruiser thinking it would be easier not having to deal with gears. I also got a 24" because i could put my feet flat on the ground while sitting on the seat. The 26" seemed too big. Well, I was mistaken. So I returned it & got a 7 speed 26". Aside from the first bike being more difficult than I thought I was all sc...

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...

Hi Peeps, I hope y'all have been feeling as well as I have lately. I had ANOTHER birthday, dang things keep making me older. I'm happy they keep coming, but dang, do they have to increase our age? Well, NO they don't. I don't feel any older than I did last year at this time & I don't look any older, so I'm not. I actually feel SO much better than I did last year at this time. Last year at this time I was beginning another exacerbation (I'm getting better at spelling that, at least now I'm close enough to get it in spell check!). Last year my hands were constantly on fire & I was losing strength on a daily basis. This year my hands aren't burning unless I work them a little too much & my strength is the best it has been in 7 & 1/2 years! I can't pick up a 50lb sack of flour but I can pick up a 25lb bag of potting soil! Yes, it's January & I said potting soil. I live in Florida remember? It's 82 degrees out. Now, I can...

"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...

                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 ...

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 fi...

               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 wi...