I'm off to have Tysabri ....

Today is another trip to partake of the liquid gold we MSers call Tysabri. If I have counted correctly, and I have used my fingers, this should be infusion number six as I started in October. That means I am showered, just finished, and will be drying my hair into its own sense of a non-fashion style in just moments after I finish typing the next few words.

I have been feeling a little perkier lately and I am not certain if it may be Tysabri or just the fact the sun has been showing itself in my part of the world lately. Sunshine is another med for me and one I don't get enough of during the winter here. I am also so pleased that we have had almost no snow for a week or so and that is worth a shout out also so here's to no snow. Woohooo!!

Dryer time, talk amongst yourselves and I'll be right back.

Dried and lovely as ever, I will now continue my typing and sharing of myself with you. Other random tidbits include the fact that I have not had a real pizza for a whole week now and have instead succumbed to the evils of Dunkin Donuts and their ridiculously delicious hot chocolate and brownies. Yes, they have brownies now and they kick some brownie butt if I could say it. There is frosting on top and chocolate shavings. Yummmmmmmmmmmmmo!

My sister is also home for a little bit for her real "vacation" time after being in Iraq. Yes, she and my brother both came home when my dad were having his heart operations but now she is officially done with her tour in Iraq so she is back "home" at Ft Campbell, KY. Yesterday we went to see "Slumdog Millionaire" and we had a bit of a kerfluffle. (Yes, that is a real word; I heard it actually used on PBS the other day. I may have misspelled it but it is a word!).

The paper reported the first showing at 2:20. We agreed to meet at 2:10 so I could see the previews. I love movie previews at the theatre. I arrived first to see that they don't show movies M-Th until 4:15! Alas, when she got there, I had to break the news and she drove back home with a promise to meet at 4:30 to view the 4:40 showing.

We both really liked the movie but I have to say I noticed they didn't say millionaire like we do. The actor pronounced it as millonaire. I wonder if the "yun" sound just doesn't translate. I did learn some interesting stuff while we watched the movie and the way it was set up to reveal the plot was great, too. And we loved the dancing at the end of the movie on the train platform.

My favorite part was just seeing my sister home safe and sound. Now we just need to wait out the days until my brother returns to Germany from Iraq.

Time for me to go. Tysabri waits for no man or woman.

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...

Why couldn't I sleep?

I have always been a great napper. I could pretty much take a nap within an hour of waking up because my fatigue is so pervasive. If napping was an Olympic event, I could definitely represent for the US and maybe even medal! Last night, however, I didn't sleep well.

I guess it must be the Tysabri infusion doing it to me.

I've had IV Solumedrol and I know how to hook up an IV with meds and flush the lines. Heck, I have worked teaching and hooked up to an IV pole, dragging it around the room. As a complete aside, not all IV poles are created equal. If you get a "bad" one you know it. The last one I had kept twirling itself around, maniacally ramming me in my sandaled feet. Ouch.

I've taken Copaxone for almost the first two years of my diagnosis which meant daily shots. My first shot was on Christmas Eve, alone in my apartment, but I just wanted to get it started. Then I later took Rebif for my thrice-weekly torture pricks that make you feel like dried dung in an African desert.

But this one measly infusion kept me awake until almost midnight and then it had the gall to keep me tossing and turning when I finally could get to sleep.

I feel as if there is so much riding on this one medication. Will it make me better? Will it slow down my multiple sclerosis? Will I have an allergic reaction to it? What will I feel like later on? What will I feel like today while I'm there and then after when I come home?

Oh my good golly, too much for me to be thinking about here. It's one medication but I am hoping for a miracle. Is it too much to ask for my life back?

Can I follow through on tasks that I started? Can I deal with the heat of late spring and summer like a normal person instead of having to hide inside like a vampire, minus the cool cape and the blood-drinking thing? Will I be able to walk a reasonable distance, say from my room to the teachers' room, without limping and spasming like a cowboy who has been riding his horse for far too long ? Can I think clearly again? Will I stop living in this pit of depression where everything in life overwhelms me?

Look at me asking for all of these things to make my life better. How selfish can one person be while enjoying the slow spin on this third rock from the sun? As selfish as she wants to be, I reckon.

If you happen to be reading this and you're of the prayerful sort, I wouldn't mind someone throwing up some positive vibes for me around 1:30 this afternoon. Maybe I'll sleep better tonight.