I think that solely by my choice of pictures today, everybody can clearly understand why I was on ritalin for the last couple years...Lately, focusing isn't my strong point...
Well, I saw the "goiterologist" Wednesday, and, interestingly enough, his formal title is a surgeon. WTF?? No, he's scheduling me for a needle biopsy in a week or so...and after I saw him, I went to my neuro appt...that was a rollercoaster of emotions! First we were laughing cuz her name had changed in the last month, so, naturally, I thought she got married, right? So, she walks in, gives me a hug, and I started bitching her out about "Why can't you just find a Smith or Jones or Brown?" Cuz her name now is also a little hard for me (with my ms elocution!) to say. But, no, she's still married to her same husband, she just is using her maiden name. Because it really is a little easier to say (a little...). Well, we all started off laughing, me, her, her assistant...then we started in on what I want. I wanted 3 days of IV steroids, then 12 days of prednisone to taper...uhhhh...I lost that one. But I did get 1 IV of 1000 mgs. steroids today at the hospital IV room...+ a big old roast beef & swiss sandwich with a ton of mayonnaise....and, of course, a Coke...& the nurse made me eat the peaches too! So, I already had had a big 12 oz mug of cranberry/blueberry V-Fusion (that's my new favorite!! mmmmmm!). So, yes I'm still eating healthy! Just not enough, obviously...I'm still hanging around 88-90 pounds, and this SO fuckin' sucks!! I feel like I'm sounding like a whiney little crybaby here, but, that's kinda how this week's been...shit-tons of neat stuff, balanced out, of course, by bullshit stuff...
I'd been considering quitting the tysabri...gave it a fair 6 months try, it worked in the first 2,which is when I was advised to expect nothing! But we went through all the physical tests today, and she came up with I'm actually doing a lot of stuff better...I guess I AM, it's just so gradual, I'm not catching it...like the ataxia is better. We test that by having me touch my nose with my right finger, then touch her finger that she's holding up....sound easy....hahahahahahaha...I'd never pass a drunk test again! But it actually is 'doable' now. A lot of little things really are, I just feel weak, because the home physical therapy isn't enough, so I hafta start going out to the Clinic three times a week for it, she said "Libby, I told you months ago, you NEED to do this! It's either this or I'm sending you to a nursing home for three months to stay there and you'll HAVE to do this there!" O ! M ! G! Now you see where the "downhill" slide of my week hit! So, after my major meltdown in there, not the least of which was "I CAN'T leave TRUMAN!!!" Hell, I had a hard time leaving him here last summer when I went & stayed with my friend in the country on weekends! This is the area where she added Paxil to my Cymbalta, telling me to take one of each in the morning every day... So, we compromised (somehow, I think she got the better end of the deal! grrrrrrrrrr!!). But I'm NOT going in a nursing home! I told her okay, I'll come out here 3 times a week for real physical therapy and I'll stay on the tysabri for the next 6 months...but I WANT solu-medrol (IV steroids)! *picture a small child stamping her foot in a very haughty way*. And she said that you really can't do the full 3 days 1 gram a day for 3 days, then the prednisone taper, that's WAY too much while you're on tysabri...which I already knew, but was just being the stubborn bitch. So I got set up to get one gram today, and that's it...but hell, it's better than nothing!
She also checked out my right hand, which I still can't straighten my pinky out, well, I can if I use my left hand to pull it out straight, but that's cheating, and I quit doing that a long time ago. She sat in front of me and opened a desk drawer, got a safety pin, and poked my hand and arm all over...it hurt a little on the thumb side and I couldn't even feel it on my little finger, and up my arm toward my elbow. She said she thinks I have a nerve in my elbow (my ulna, not anything like carpal tunnel) causing that. She was pretty sure about that, says that too many people with ms blame everything on that, when there's something else wrong...so now I'm gonna go to another dr to check that out too!! Geez, good thing this is winter and there's nothing else I might have planned in the next months, or anything...:-/...God, I feel all old & decrepit at the age of 44 (oops...45 next month...sonofabitch!).
Anyway, that's part of the reason I haven't been around...you can probably guess a little of the rest...real life gets in the way sometimes, doesn't it? But a lot of that is in a good way...unless it has anything to do with health problems...
BoUnCeS!! Libby!
