Tuesday, February 24, 2009

Tysabri Journey

Yesterday was my Tysabri infusion. All went well but I definitely felt I needed my fix.

Usually there are other women who get their Tysabri the same time as I do but I think we all had a scheduling conflict. A nice man I have seen several times before was there so we chatted some. President Obama had a new conference on CNN so we watched that and those kinds of things always spark a lively conversation.
It was a good conversation this time with intelligent and educated poeple which is alway better for me. I can't discuss things with the equivalent of a lightbulb. It was a nice conversation
and discussion.

After my Tysabri, I had a few errands to run in the hospital so I set off. Mark gave me an hour so he could pick me up on his lunch.
First, I had to go to my neuro's office. My long term disablilty policy is always updating information. They are the biggest waste of paper. So I dropped the papers with his office, paid $6.00 to have them fill out the form and wrote a note to call me when it is done so I send all the info back together.
Then I went up a floor to my co-facilitator's office. I heard someone had dropped something off there for me. She was with patients so I left my card and I will call her later.
Then I stopped by physical therapy. They were somewhat surprised by the fact that I was walking and walking so well. I left them info on the MS Walk.I'm hoping they will have a team or sponsor Mark and I. It was good to see them. They are really positive and I think I shocked them by walking in.

Mark picked me up about 11:30 and we went to grab some lunch. Had a sub sandwich for lunch but couldn't eat the whole thing. Just too big.
He then dropped me off so I could get my nails and hair done. I arranged both appointments the same day on purpose. I got done early and just hung out. My friend owns it so it is a nice place to relax ( incase the pampering I had just endured wasn't enough) Her waiting area could be in my home.
My phone kept ringing off the hook yesterday so I apologize to people who called who I haven't got back to yet. I will later today.
I have an advocates conference call today from the Biogen Idec about Tysabri.

I didn't sleep very well last night and feel very crumpled up. I have so much to do so I will just make small steps forward and accomplish what I can. Mark is headed to Sacramento.

1 comment:

Libby said...

cathy, i'm thinking about going back on avonex (as soon as my w/c is fixed, of course!) in stead of keeping on the rebif...if i'm gonna get stiff legs this bad, well, i might as well get it once a wk in stead of 3x a wk!! i dunno, i'd like to maybe try tyssabri, but, i'm just unsure....since i did avonex for the first 13 yrs, maybe that's WHY i'm still able to wqalk with a walker...i dunno...