My life with CIDP

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...