Sunday, December 7, 2008

Tysabri hangover





Yesterday I went to visit my parents which is more of an ordeal than one might think. I have to make sure that I am properly rested and the weather is okay and the timing is right so I am not driving home in the dark and especially not the dark when it is snowing.

My parents' little town (30 minutes away) was having an Open House Holiday Weekend so I was going out to a few places with my mom. She wanted to purchase a poinsettia and I was going along to look at a few places. When I type a few, I truly mean a few, as in three places and I was done. By the third stop, which was a small and cluttered but beautiful flower shop, I was so hot that it was all I could do to move my giant body around trying not to whack anything and stay upright. I didn't dare try to hold anything because my back hurt so badly I was certain I would drop it and break it and therefore buy a broken item.

I also noticed that every time I went to get in or out of my mom's car, a low-rider type car compared to my PT Cruiser, that my foot could not clear the side of the car. Ever. I had to lift it up extra with my hand on my leg and make a real effort to try a second time to get my leg and foot in or out. I've never noticed that happening before.

I guess this means I am now in my Tysabri type hangover. I have been sleeping a lot, a good 12 hours at night plus a nap even with Provigil for a few days now. (I had my third Tysabri infusion on Wednesday.) I am also having back pain so I will start tracking this in my little calendar dohickie from Copaxone even though I haven't been on C for over a year.

My Christmas cards are basically mailed out. I have my presents primarily purchased but not wrapped. There is no way to put anything under the tree because my cat will attack and scratch it open and who wants a present that is ripped open?

So here I am with no booze but lots of chocolate and my Tysabri hangover period with my Aleve and a really comfy bed and some books to get me through this. Oh, it could be so much worse...

4 comments:

Webster said...

I'm sorry about your TyHangover. It sucks when the medicine that is supposed to make us better, or at least keep us from getting worse, end up making feel like crapola. I wonder why that is?

I sometimes have to do the leg lift getting into the car, too. But if it's a "low rider," you might need a hoist to get me out! LOL.

And YOU HAVE A PT CRUISER? I heart PT Cruisers! What color? Do you love it? I'm just a little bit jealous - can you tell?

Lanette said...

Have you noticed any improvement in your regular symptoms since being on Tysabri? I read about your MRI, but, have you noticed anything change in your walking, balance etc??

Still on the fence about it...

Weeble Girl said...

Webster, I have a silver PT Cruiser and I am so short that I find it the ideal car for me. It's got the little sun roof and the CD player and I am good. I never notice having a hard time getting into my car so really notice other people's vehicles.

If they have a big one I need to climb into I almost need a hoist to get my big butt up in there.

The Ty hangover thingie really isn't that bad, just annoying with the back pain and the extra tiredness. The back pain does go away after awhile so I am really going to write everything down from the infusions from now on to see if I detect a pattern of issues.

Thanks for stopping by! Lanette, I'll write over on your blog for your answers.

Weebs

Lanette said...

Weebs - Thanks for answering my ?'s regarding Ty. I am 37 and my QOL this past year has really taken a hit. May I ask do you know what is a "high" band count? Like 10 or 20 or what? O anything over 2...

My other issue is he only wants me to do Ty for 6 months - he says due to long term safety issues with Ty and then do C again. But C hardly did anything for me before and the site reactions were crazy bad. Interferon's are not an option for me either because of my over the top anxiety and they make me well...crazy. I'm just trying to compare our disease track if you will. I know everyone is different, but, how different really. I need to start exercising and loosing weight like right now - I think that is part of it - I could loose like 50-70lbs. I really feel that has something to do with it. If you ever want to discuss this stuff offline you can email me at lifeisachainreaction@gmail.com. :)