Monday, August 25, 2008
Research. It's really a crap shoot..that leads back to HOPE.
Thank goodness we live in the Internet age. Especially when your up with steroid insomnia. I've spent the last hour doing some reading on several MS blog and forum sites regarding the different treatments for MS. They are all filled with information about the first line meds. The CRAB's(Copaxone, Rebif, Avonex, Betaseron). I have been on Copaxone and Rebif and of course more steroids than some ball player out there. Once it's determined the first line meds aren't as effective as they need to be, you move on to the big guns. However, the reality of what I'm learning is that all the treatments are basically crap shoots. There is no one treatment that can hold the MS back. It may corner it for awhile, even a few years. Yet MS always seem to seems to come roars back when folks least expect it. While the reading doesn't really give me much encouragement. It does reinforce that it could be a lot worse. So in the quest to remain mobile WITHOUT ending up in a chair, it all comes down to weighing the risks of the treatment vs. the risk of no additional treatment. I know that my body can't continue to exist on high dose steroids like it has this summer. Yet it's only a matter of a few weeks after a steroid infusion that the MS strikes again. So obviously, it's taking more than Rebif to keep it at bay. I'm already losing my hair because of all the steroids. It literally falls out by the hand full. Just when the steroid weight starts to come off....well it ends up back on with the next dose. After just the second dose of this series I can't wear my wedding ring :( So, for me, I'm at the point that the risks of NOT being aggressive with treatment is more frightening than the path the journey has taken me on this summer. I feel my journey has come to a Y in the road. Either I continue exactly as I am now in one seemingly continues exacerbation. In fact, for me, it's not even an exacerbation. It's like every day there is a new symptom, a continuum. No longer are there periods where I seem to get better between new symptoms appearing. I feel if I choose the fork in the road in which I continue exactly as I am doing now, I'm at risk of becoming permanently disabled and unable to return to work. The other fork is just as scary in it's own way, yet there seems to be more hope down that path. Granted, the treatment can often seem worse than the disease, just going through back to back steroids is brutal enough. The thought of chemotherapy that lasts literally years isn't a pleasant one. However, if it means no more exacerbation's, no more new symptoms for as long as I'm on it. Well then that buys 2-3 years of more mobility. Who knows what will be available in a few more years. They are having wonderful results with stem cell replacement with MS. SO, perhaps it's just a matter of time before they can figure out a way to actually regenerate the damage. The point I guess is that we each have to come to terms with what were going through and hat were willing to go through to maintain our quality of life. I'm a scrapper. I refuse to give in. As long as I can I will fight to be able to live my life and not become a captive of this disease. I'm often asked how I can stay so positive and keep going on. My response is how can I not? Everyday bring new possibilities, new hope. The journey ISN'T easy, but I believe that it's when you give up and give in that your done. Not only with MS, but with life in general. Life ISN'T fair, but it's worth fighting for. It's worth living it on your own terms and putting your best effort in everything you do. For me I'm lucky. I have a strong personal faith that carries me through my life. I can't imagine anyone going through a journey like this without faith in God. So, I'll continue the journey with as much Grace as I can and keep fighting every step of the way. I will embrace the victories and weather the rain.