Xanthia's MS Life

I've seen some bloggers creating unofficial statements regarding their choices in case they end up like Terry Schiavo. I think that's a good idea. I don't have a living will so I'm following the trend here in stating that in the event that I should end up in a coma depending on artificial life support just pull the plug please. I would prefer not to be a drain on society, my family or friends. No extraordinary measures to keep me alive, please! There, I've said it.

Oh wait, one more thing, don't bother putting me in the ground. What a waste of space! Donate my organs, give my body to science, burn me up, whatever.

Although it doesn't feel like spring the calendar assures me that it is indeed the first day of spring. The longer daylight hours mean I can finally come out of hibernation and my mood really does improve. I'm looking forward to gardening, taking Coco for walks, swimming, biking and uh...searching for a mate...I hear that cute little dogs are good for that but so far she hasn't done me one bit of good in that department.

The weekend went by slowly, I stayed home all day Sunday, could barely get out of bed. I really over did it on Saturday by going to the library for several hours and then hanging out with Jim Taylor from the building in the evening. I really paid for it the next day but I did manage to get up long enough to finish a painting. It's nice that painting requires so little energy. I wanted to get some spring cleaning done but I just couldn't manage it.

Time marches on and science pushes on too. There are all kinds of drugs in the works right now and I take comfort in the fact that it's only a matter of time before something else becomes available to me. After all, Tysabri wasn't the magic bullet so I'm just letting it go. In the meantime I do not plan on going back to the drug I was on before (Rebif). If I only have to wait a few more months or even years before beginning a new MS modifying drug then I think it's worth the risk. The risk being that I may end up getting worse. I don't know exactly how long I've had MS. Judging from the symptoms I'm guessing I've had the lesions for at least six or seven years (probably longer) so I'm gambling (call me crazy!) that nothing will change significantly any time soon.

After the shock of Monday's announcement about the withdrawal of Tysabri I spent the next couple days ruminating over it. When I first read about it I thought perhaps it was just a rumor, then after a quick phone call to my doctors office confirming the news I felt sick. I sat in disbelief on the verge of tears. There are so few drugs available and this one seemed so much better than Copaxone or Rebif. Just going in once a month for an infusion is far more desirable than having to give yourself an often painful injection three times a week. My hopes were a little higher after getting on Tysabri. Monday night I went home, poured myself a scotch and cried. I couldn't share my grief with anyone. I don't know anyone who could possibly understand what it's like. Hell, it was new to me too! Then I started slapping some paint on a canvas. Painting does a lot for my stress level. I felt better when I finished. Still, having the carpet ripped out from underneath me has left me feeling a little depressed. It brought back the old "why me" feelings I thought I was done with. I'll shake it off though. I think I'm pretty good at rolling with the punches (too bad I can't punch back though).