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2020 Med Changes

 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
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Updates coming soon

       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. That was hard and I'll make a longer entry later on th
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Happy New Year

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
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Thankful

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
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Highs & lows

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,
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Can't wait to get on the road again

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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
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Life after rehab

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
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