2012 recap
"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) because my balance was getting pretty unstable. But I got my scooter & off we went. We had a blast! If you are a Harry Potter fan I highly recommend going, the castle ride is worth the wait. And if you are in a scooter they have wheelchairs for you to use going through the que but you have to be able to walk on a moving platform to ride the ride but my mom doesn't do rides & she was able to walk through the castle with us & not have to ride. The first trip there we didn't go into the castle because there was NO WAY I could have walked on the moving platform. But we had 3 day passes so we went back when I was feeling better.
As January went on I hurt more & more & got weaker & weaker. My Doctor added steroids to my IVIG infusions in February. My wonderful dad tore out the back steps & made new ones that are closer together and made different hand rails to make it easier for me to get in & out of the house. Through out February as I kept getting weaker I finally had to give up & use my walker in the house & the wheelchair if we went anywhere. I was really mad & depressed but I made it through to the other side. I never lost the ability to walk, I just had to use the walker. I didn't allow my new friends to come over because they had never seen me like that & I didn't want them to. Jen & Maribel...JJ & Twin. They met me years ago when I was just learning to walk again & was using my walker so I shouldn't have minded this time but, you know how pride is. "Pride goeth before the fall" That phrase works for so many different things if you think about it. But late in February they wanted to come out & see me so after a nap I agreed. Maribel had finished crocheting my blanket for me & she wanted to give it to me knowing it would help me feel better. (and it did) My blankie as I call it is a blankie of many colors. If you know the Dolly Parton song coat of many colors you know where I got the idea for it. & it was crocheted with love in every stitch. It is bright & obnoxious & I LOVE IT.
In March I started feeling better & then at the end of April when I was feeling good I fell in the yard & broke my foot. So through May I had a boot on it. We went out for Maribel & Peach's birthdays (we celebrated them together because they are a week apart) So we went to lunch & then Joann's & they MADE me use a wheelchair in Joann's. I wasn't happy about it but it was 3 to 1, 4 if you include the 10year old. So they won. Jen drew the short straw & had to push me around but we had a nice time. In June we went back to universal studios & through the castle. I was still wearing the boot but I was able to navigate the moving platform & LOVED the ride. (If you go I also recommend eating at the three broomsticks & getting a butterbeer) We didn't make it back for the 3rd day because time ran out on us but it was still fun.
I talked with my Doctor about tapering off the steroids in July & I am completely off them since October I think. I feel great. The best I have in years, probably even before I got sick. My endurance level is up, my strength, while not back to before I got sick it is the best its been since. I can sit on the floor & get back up without anyone helping me. I stood on a step ladder & hung Christmas lights. I can drive & go places by myself I feel almost human! So this Christmas is going to be great for everyone including me! (I know, I know, I hope I'm not jinxing myself too)
Next up is my birthday, January 3rd. I want minions & diplomatic immunity, but I know I won't get them this year either. (Hell, I'd settle for a date!) Oh well a girl can dream right? This year we are celebrating my birthday because I feel good. Last year even though we went to universal I didn't want to celebrate because I didn't feel good. Me & the girls are going out for some FUN this year. I think I want to try salsa dancing...if I can do it in my bare feet!
As my first year of blogging comes to a close I want to say Merry Christmas, Happy Hanukkah (I hope I spelled that right, I don't mean to offend if I didn't) Happy winter solstice, Happy Kwanzaa & Happy New Year. (If the world doesn't implode on the 21st!)
As always, believe in the magic of life.
Stay safe
Cheryl
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) because my balance was getting pretty unstable. But I got my scooter & off we went. We had a blast! If you are a Harry Potter fan I highly recommend going, the castle ride is worth the wait. And if you are in a scooter they have wheelchairs for you to use going through the que but you have to be able to walk on a moving platform to ride the ride but my mom doesn't do rides & she was able to walk through the castle with us & not have to ride. The first trip there we didn't go into the castle because there was NO WAY I could have walked on the moving platform. But we had 3 day passes so we went back when I was feeling better.
As January went on I hurt more & more & got weaker & weaker. My Doctor added steroids to my IVIG infusions in February. My wonderful dad tore out the back steps & made new ones that are closer together and made different hand rails to make it easier for me to get in & out of the house. Through out February as I kept getting weaker I finally had to give up & use my walker in the house & the wheelchair if we went anywhere. I was really mad & depressed but I made it through to the other side. I never lost the ability to walk, I just had to use the walker. I didn't allow my new friends to come over because they had never seen me like that & I didn't want them to. Jen & Maribel...JJ & Twin. They met me years ago when I was just learning to walk again & was using my walker so I shouldn't have minded this time but, you know how pride is. "Pride goeth before the fall" That phrase works for so many different things if you think about it. But late in February they wanted to come out & see me so after a nap I agreed. Maribel had finished crocheting my blanket for me & she wanted to give it to me knowing it would help me feel better. (and it did) My blankie as I call it is a blankie of many colors. If you know the Dolly Parton song coat of many colors you know where I got the idea for it. & it was crocheted with love in every stitch. It is bright & obnoxious & I LOVE IT.
In March I started feeling better & then at the end of April when I was feeling good I fell in the yard & broke my foot. So through May I had a boot on it. We went out for Maribel & Peach's birthdays (we celebrated them together because they are a week apart) So we went to lunch & then Joann's & they MADE me use a wheelchair in Joann's. I wasn't happy about it but it was 3 to 1, 4 if you include the 10year old. So they won. Jen drew the short straw & had to push me around but we had a nice time. In June we went back to universal studios & through the castle. I was still wearing the boot but I was able to navigate the moving platform & LOVED the ride. (If you go I also recommend eating at the three broomsticks & getting a butterbeer) We didn't make it back for the 3rd day because time ran out on us but it was still fun.
I talked with my Doctor about tapering off the steroids in July & I am completely off them since October I think. I feel great. The best I have in years, probably even before I got sick. My endurance level is up, my strength, while not back to before I got sick it is the best its been since. I can sit on the floor & get back up without anyone helping me. I stood on a step ladder & hung Christmas lights. I can drive & go places by myself I feel almost human! So this Christmas is going to be great for everyone including me! (I know, I know, I hope I'm not jinxing myself too)
Next up is my birthday, January 3rd. I want minions & diplomatic immunity, but I know I won't get them this year either. (Hell, I'd settle for a date!) Oh well a girl can dream right? This year we are celebrating my birthday because I feel good. Last year even though we went to universal I didn't want to celebrate because I didn't feel good. Me & the girls are going out for some FUN this year. I think I want to try salsa dancing...if I can do it in my bare feet!
As my first year of blogging comes to a close I want to say Merry Christmas, Happy Hanukkah (I hope I spelled that right, I don't mean to offend if I didn't) Happy winter solstice, Happy Kwanzaa & Happy New Year. (If the world doesn't implode on the 21st!)
As always, believe in the magic of life.
Stay safe
Cheryl
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