Coming to terms

Now, more than a year after onset, I am coming to terms with the long term complications. I will more than likely always wear AFOs. I will never have the stamina or "grace" that I had before. My joints will occasionally ache and hurt from time to time. I will soldier on and live my life to the fullest. :)

Home Sweet Hospital

So, it begins again. I'm in Progressive Care Unit at KU Med Center, room 6213. Current thought is that I'm having a recurrence of the GBS or I have CIDP, Chronic Inflammatory Demyelinating Polyneuropathy, basically chronic GBS. Neither is positive. Nothings really happening tonight, just IV fluids, start IVIG again either tonight or in the morning, and then Lumbar Puncture in the morning. We'll hopefully know more tomorrow after tests and such. It may be that I transfer to a different hospital. We'll see.

AAAAAAHHHHHHHH!

All I can think, is this is crap. I'm headed back to KU Med tomorrow to try and figure out what is going on. I'm relapsing and my numbness is again ascending, it's at my mid thigh. I guess it's back to the blog. :(

Things:)

ARE GOING GREAT!!!! Just today I found that my kick out is at about 80% !!!!!! I'm flipping out! OMG! I actually teared up because I hadn't measured it or my progress in a while so when one of my docs asked me this morning, I surprised myself and everyone else. I can just about straighten both legs, with the right one a little better than the left. This means that the next time we go to KC for an appointment(in two weeks), I get to walk in with my braces and give everyone cookies!! I would also like to say that the amount of weight I've lost now surpasses the amount I now weigh. I was 275, I am now 134. i win:)

NEW CHAIR!!! and other things that happened this past week

Oh man, so much has been going on, but every time I get home and get ready to blog, I'm too tired and just fall asleep. I'll start with therapy and work my way through the last week. Therapy has been especially amazing lately. When I first started at Kansas Rehab, I wasn't really impressed or comfortable, but I got to know the therapists there quickly and now I love it. I've been working super hard on walking, doing all sorts of therapies and using all sorts of machines to relearn what I forgot and get my muscles to listen. A couple of days ago, I walked by myself in the pool while holding onto the rail(my knees still like to do funky things, like lock, go backwards, and collapse out in front of me). I was so happy with myself. My therapist, Gus, walked next to me, but he didn't have to hold on to my gate belt and the few times my knees collapsed, I was able to pull them back up under me. I'm sooo close to walking it almost hurts! I still have altered sensation from the bottom lip down, but I feel heat and cold and pain where I could not before. My lower legs are regaining muscle strength and they have stopped hurting all the time. I think the lowered sensitivity and pain is due partly to PT and OT.

I Did It!!!!!

So this past week has been all about making amazing strides in my mobility and ability(and being sick). First off, I'm doing about 75% of my transfers without my slide board. I'm able to hop from my chair to the car and back as well as to and from the bed and commode. It rocks!!! Also, I figured out how to get back out of the recliner in the living room without any help. But I have to say tonight's triumph was the biggest. I was able to use the bathtub in my parents bathroom:) Before I got sick, I would spend hours in the tub. I read in there and just hang out. So when I lost the use of my legs, this loss of the tub was very upsetting. I was determined to find ways to do things like use the tub and stairs while still having extremely limited use of my legs. So I did what any internet savvy person does and went on both google and youtube. After a while of searching, I finally found a video of a lady demonstrating how to get in and out of the tub without leg mobility. I tried it and it was AMAZING!!!! I got in and out just to make sure I could do it, and then I got back in and had what has to have been the most amazing bath EVER!! It was most excellent and I'm so glad I'll now be able to use the bath because the hot water makes my tight leg muscles feel so much better and it helps with my angry tummy too! About the stairs though, I think going up and down stairs in my chair is not something I'm going to try, the videos look WAY too scary and intense. I think I'll stick to going up and down on my butt, which I still haven't tried, but I plan to too, since my wii is upstairs. There is a long staircase, but since it's carpeted, I think I'll be able to do it safely. I'm still waiting for my wheelchair, but it should be here any day now. Life is good:)

Home Life

So I've been home for awhile now, and it doesn't suck as hard as it did at first, things are getting a little easier. This morning my dad and I went to KC to an appointment at KUMC with a psychiatrist who specializes in Aspergers. We saw Dr. Hellings and did another assessment. I go back in 10 weeks to see what she thinks. While there, we stopped by PT and I got to see Claude and Alicia and everyone!!! It made me really happy and I was glad I got to show everyone my progress and how I can do a wheelchair push up. We also talked to Claude about starting an Etsy shop that sells custom transfer boards, she too thinks it would be a great idea and said she would let patients know about it if we brought her cards. I thought it would be really hard or weird seeing everyone again, but actually it really brightened my spirits. On another note, my shoulder muscles are really getting soar these days, I suppose I should really start to stretch every morning again. Today I feel hopeful, I just hope I stay that way. OH! I wanted to say that for lunch we stopped at Local Burger in Lawrence and it was most delicious!! I would definitely go again. :)