Tuesday, December 2, 2008

Feeling better

In case you're uncertain, that is a new-fangled thermometer up above. The kind you stick in your ear canal area for a nanosecond and beeeeeeeep it tells you your body temperature. Last night I was above 100 and not feeling so well.

I took two Aleve last evening and then slept for 12 hours straight. I am still feeling tired but better and my temp is now below 100 so it looks like we dodged another bullet. That's great because it's time for another Tysabri infusion and that already knocks me out for a day and some change as it is.

I have to tell you how peaceful I feel when I plug in the Christmas tree lights and turn on Josh Groban's CD. I feel as if I am in a church where it's okay to just be quiet and calm and let your mind wander. It is so wonderful that I am grateful every time I do these two little things. I try to do it every day so it can be one of those gratitude items I put on my mental list.

I've pretty much finished my Christmas cards for my friends and have them ready to go out in the mail. I try and work on a few cards each day for the Holiday Heroes program I mentioned a few posts back. If you can help by sending in a few of your extra holiday cards, it would be greatly appreciated by the service men and women and veterans; I just know it. The veterans are especially in need of some cheer every day of the year and now at holiday time I know there are lots of you out there who can help out in this small way. Please consider it. (And no, once again I have no relation to the Red Cross or Pittney Bowes but I think this is a wonderful idea and it's easy to do.)

So the latest MRIs looked better, many fewer brain lesions but I still have so many daily issues that just don't go away. Like I said, I'm hanging in there with the Tysabri to see what happens as I travel down that infusion highway. Working is a passion of mine with teaching but it takes so much out of me. Sleeping in on the weekends doesn't catch me up as most people would assume. I mean here I am not working courtesy of MS and sleeping somewhere in the 10-12 hour range at night plus at least one nap during the day and that's with 200 mg of Provigil in me.

Once work starts up again, Provigil will shoot quickly up to 400 mg which is basically the max dose and then it just stops working. That whole process makes regular work so difficult.

Not to mention the cognitive stuff that is embarrassing to me. Losing words, using the wrong ones, saying things that make no sense, forgetting how to do things in teaching, forgetting where I was supposed to be going with a story, sigh... all that stuff stinks.

Most of the time if I'm in charge of the conversation I am pretty good at keeping it together but if I get off track due to a shiny thing this crow starts flying in circles. I get lost and my blunders are embarrassing to me. I have always been the smart girl, although I hide it most of the time at work. There I am just funny, crazy, mouthy girl. If other people ask me questions sometimes I'm on the time delay thing where I'm not sure what they just said and what the proper response should be. Or if I get the question I am missing a word, a key word. Drat, it's so frustrating!

I used to be fairly good at Jeopardy and now, well not so much. I don't think Alex will take "Who is that one guy?" as an appropriate answer. At least I have an awesome tree and beautiful music and family and friends that help me to be grateful.

7 comments:

Barbara said...

Glad to know you are feeling better. Good luck tomorrow with the infusion! I will be thinking of you...

Denver Refashionista said...

One day at time. I'm glad your MRI looked better and that you are getting some rest.

Heather said...

One thing I really enjoy doing is just sitting and looking at the Christmas tree lights (with all the other house lights off)and listening to music. It's the little things in life.

Lanette said...

Hi Weeble Girl - I have a favor to ask. Will you please email me and tell me your experience, opinion, side effects, symptoms etc and why you chose Tysabri? I then would like to email you back a few questions as I am considering it and I am looking for several opinions. If your up to helping me out, please, email me at lifeisachainreaction@gmail.com. Thanks!

Jen said...

It's hard for me to tell what my threshold is anymore. I haven't worked fulltime in about 5 years, and I have been sporadically employed outside of the home for about 3 years. I finally won my disability case this past June, and I have had the advantage of being home and creating my own slower schedule. On days when I DO have a busy schedule, I can remember why I no longer work fulltime.

You should hear me at night trying to remember words or trying not to slur like a drunk. Depending how tired I am...Oh well! Enjoy the peace and the music.

Jen

pUNKrOCKfairy said...

I too was once the family Jeopardy champion. Now I'm in the "What was that one book?" club with you. All I can manage now is Wheel of Fortune, which I use to disdain as being too easy. Sigh. Alas, as the brain slows, the compassion grows. :)

Glad you're feeling better.

Weeble Girl said...

Thanks guys! You always make me feel better.