Tuesday, October 28, 2008

Rally call

The morning after Rebif injection night is always a challenge. Seems that lately it doesn't matter how careful I am to pre-medicate myself a few hours in advance with IBU, and take another when I go to bed, my body always feels like it's been run over by a truck the next morning. Throw in the Neuropathy I've been having and it's enough to make me just want to stay in bed. I don't though. I hoist my petard out of bed, into the chair and start my day. Not wanting to doesn't matter. Failure to live my life isn't an option, no matter how crummy I feel or how hard it is to move. Giving up means giving in. I just won't do that. Focusing on the positive is often a daunting task. Especially when your having a day, like today, that all I REALLY want to focus on is feeling sorry for myself. I have identified a pattern in my behavior with the MS. I will experience an exacerbation, a pseudo-flareup, or a new limitation. I'll get pissed off about it. Which is actually a good thing....in the beginning, as it only last so long. (I never could stay made at anyone or anything for long). I think the anger helps keep me going with the "The H*%$ this disease is going to beat me" attitude anger gives me. After a few days the anger dissipates and I'm left with the "I'm throwing a pity party who wants to come?" mindset. (Which is where I am right now). My preference during the "It's my Party" chorus period (OK most of you likely have never heard of that song, so go to lyrics.com and read them), is to live in my bed, surrounded by chocolate and Petrone Silver. The remote by my side (it wouldn't be in my hand because between the chocolate and the shot glass my hands would be full. Leaving me to change channels with my nose). I'd rather have the Silver shot than the Rebif shot. Of course, part of being an adult is being rational. Whether I want to be or not. With that rationality is the realization that all a "Pity party" will do is actually make things worse. Hence, focusing on the positive. Often desperately. Thankfully, when I can't find the positive I have so many wonderful family members and friends that rally around and find it for me. So, troops. As hard as it is for me to admit....it's time to rally.

1 comment:

Anonymous said...

If you dont mind, have you considered Tysabri ? Tysabri is obviously much stronger than Rebif. You seem to have an aggressive case, and Tysabri seems to be the best MS-stopper. We need something LONG=TERM !

To judge from the cases that you can view on YouTube, and also the User Diaries on the MSRC site, it often reverses some damage, and quite a few have ditched their crutches, canes, walkers, wheelchairs. The media writes about PML but that was 2004/2005. there were no cases then until 2008 but they know how to treat that now. Those cases did not even need hospitalization.

My own experience ? I have only had 2 infusions, and I have already a much clearer mind. Hopefully the start of something good !