my first tysabri infusion date

is october 14th. I've been reading other blogs about people who take tysabri. it doesn't sound scary to sit there with the people getting chemo or whatever else and have them stick my meds straight in my body thru a vein while I sit in a chair and can't move for awhile. I'll bring a book or something. Or maybe an assignment to type. or something. I asked someone to go with me. she said yes and I know she'd go but this will be in the middle of a very important time for her. good luck girl. I know you'll see this eventually. you go kick ass and I will too.

the little girl has mostly weaned. she has done it on her own for the most part. she was with me when i filled out all the paperwork for the new med. i used that as a good time to explain why she couldn't have any more milk from mama. she's asked a few times and I reminded her. she gets angry but she tells me she's mad at me. turns away then thinks about it. then we snuggle. poor girl.

I can't think of anything else right now. things are just kinda complicated. I have been gyming it pretty well since school started. it's good to have time for that.

so I have a delimma

Several children need assistance and I am available. BUT I already have green snot over nothing. I won't make it if I expose myself to too much shit. What to do what to do. I am almost positive what Dr S would say and I know he's right I just feel like turd for having to do it. BUT it's hard enough keeping myself healthy around little booger pickers.

Damn it all to hell!!

To every thing there is a season, and a time to every purpose under the heaven:

I"m going to get a tattoo that says this. One day.

Two things...

Ever heard of Tysabri? I'm pretty certain this is my next step. Hell, this is the last step. There's nothing else for me to take to help slow this crap. That's pretty pathetic. NO, that's freaking me out.

One thing I noticed this morning...I was getting the little girl more water and had to have her feel it b/c I thought it was hot. But I could SEEEE that it shouldn't have been. She felt it and said it was cold. WTH is that all about. Did the wires get new insulation that is from china and full of lead or something? I used to be able to tell if something were kinda cold...sometimes. Now that's gone. Yeah great. No wonder I never wear a coat and think it's hot when it's 80 degrees. I sweat like I just ran a marathon all the time.

Tired of this crap.

Seriously.

July isn't even half over...

and a whole lot of odd crap has happened. I guess the start was in June. Did I say I started Avonex? Did I say I stopped it after one dose b/c it made me seriously sick? Did I say I'm not on anything now? Did I say I can't get any answers?

I turned 35. I also started PT for my bum knee. The PT chick, who is HIlarious, suggested I get a handicap placard and a cane. NO thanks. I know it's probably best but I just can't do it.

Did I say I also started doing YOGA? It makes me feel strong. And weak. B/c I can't really do much without shaking like a leaf. Could be that I'm also weaning down the neurontin. Yeah maybe a bad idea but it could be one of the causes of my never ending weight gain. NO I'm not vain, I'm scared to have BP issues again.

Whatever. Things to deal with.

OH and I am having a walk MS team this year. Join me! Also my neighbor who is a GEICO guy and is joining my Walk MS Team...check my facebook page and you can join my team too...anyway he gave me his card and said for every person who calls or checks online for a quote he will donate the money he gets to my team. How cool is that. Wanna help? Call 1-800-342-9070 or go to geico.com/friends and put in or tell the dude referral code 073160 and answer a few questions. I did and even with Red and I both having speeding tickets this year our auto insurance is CHEAPER than what we have had since we got married in 1999, INSANITY!!!

Anyway, that is all for now. See ya.

so I could change this blog name to Avonex A- somethings but I'm not...

why not you ask? b/c Avonex kicks my ass. I got sick about 15 hours after my first injection and I'm still sick from it. Sick enough where I got a call back like 5 minutes after I left my neuro a message telling me NOT to take any more of it. If you have TRICARE you know that's unheard of. Works for me. Meanwhile I feel like shit.

NO more. Didn't I say that before? Yeah well, now I mean it.

My MRI, in theory, was unchanged, but it's way too complex to really see that. what if one lesion is bigger or I have brain shrinkage. The issue? They used a different MRI for this scan. Can you really compare the two? Scientists out there all yell NONONON! Regardless now I have left side issues so obviously something is going on. Lots of new stuff is happening

SO now I am trying acupuncture. it calms me. Maybe b/c i want it to? I also started doing yoga. That is cool. I felt an issue coming on the other day and my good short friend was like yoga breathing. YES yoga breathing. I'm going to get thru this one way or the other. Oh and where's my white candle ;) Thanks, pork product, for that info.

I started taking a creative writing class. We'll see how that goes. I also need to find something for this girl to do this summer. she's already seriously on my nerves. Quiet time means nothing. I have to be able to hear myself. I have to.

today was big slidey hole day...

perverts it was MRI day. They have a new bigger magnet MRI at the joint. I got to test it out. Now they strap me down from the chest up. Surprisingly I had no issue with being stuck like that. I couldn't even tell how long I was there.

The bad thing about the day? They used my left arm and apparently had a difficult time getting a line in for the contrast only I didn't feel ANY of it. Yeah I used to have feeling on the left side.

June 4th, you know all speedy like, I get to go to the neuro so he can tell me the results.

I have a few things to say to him as well. I'm done with these meds. Done. I'm tired of tasting medication. I'm tired of feeling like shit. I didn't used to drag and have to take meds to stay awake and meds to sleep and meds to calm down. I never had problems with my thyroid or stomach or other parts of my endocrine system. If this shit is supposed to be protecting my brain then why isn't it? I won't sacrifice the rest of my body for nothing.

If you have time read this. PRISMS Tell me if I'm seeing something wrong. Tell me what you think I shoudl be seeing after more than 2 years on rebif. B/c I'm not seeing what I think I should be.

I think mostly I'm angry. Angry and tired and fed up. I don't like this. At all.

This is Meredith's birthday month...

she's going to be 4. FOUR. She's a big girl. She says she's going to wean, take showers and drive a car. It's going to be a big month for her and us too huh?

Zoe has started an MS group at her office. I really like talking to the ladies. I find it to be very helpful.

A lot of my meds have been changed. My depression has gotten much worse. Bad enough where I'm not typing what happened here. Either way, I'm working thru that and a whole host of new health issues.

I'm tired. Like worn down. But my friends and my little family will help me get back to myself. Whomever that is. It's been so long. I'm not sure I'd know her if I ever even ran into her on the street.

I'd like to get off rebif but that's up in the air. Hell, I'd like to get off everything except the neurontin. I like walking without tripping see. Weird huh. Oh well

SO that's all I have thwe heart to type. Oh that last post, that's my new favorite song.

Aqualung - Brighter Than Sunshine

wowwww

it's been a long long long time. I guess I just don't feel like writing all the crap that I live every day. I can now add a GI and an endocrinologist to my list of doctors. I swear these meds that are supposed to be keeping my brain and c-spine healthy are fing up the rest of my body. Tired of it. Tiredddddddd.

It's 2010. How lazy am I. Ok now I'm done.