As many of you know, I put my life on hold in 2014 in anticipation of attempting a cure thats only available at the moment under experimental conditions of a clinical trial. In fact, my whole familys plans revolved around an unknown start date during the fall, including possibly moving to Utah to be close to the university hospital and all that a clinical trial entails. After months of waiting, and suffering through medication changes in preparation for the trial, we found out I had to forfeit this opportunity. The cure should still work, but I wouldnt survive the requirement of the trial to stop all medications for a month before the trial. I wouldnt survive a week, let alone make it to the trial. It was a huge letdown, but also a relief. Regardless, Im mentally spent after a years worth of pent up anxiety. Again, my tomorrows are in a abyss I cant see through. No idea what to do next and what to expect nor how to prepare myself. Back to the drawing board. As with every aspect of my life, there were many risks involved, some known, many unknown, but Im running low on time with my current treatments that simply makes things a bit easier on me but doesnt solve anything. Most importantly, after hanging on for all of my 32 yrs, it seems Ive finally made it to the end of the tunnel. Giving up a year or two or more in exchange for the rest of my life, a life without limitations and impending doom, is well worth it. Without early access to the cure through this clinical trial, it looks like Ill have to wait 5-10 more years before this medication is publicly available. My severity is so rare the only way to use the medication is unconventional means, so no entity wants to be associated with that kind of risk. For the foreseeable future, its back to buying time until the cure is available. We need to find new treatments, some of which are experimental and risky, to hold me over for a few years. https://youtube/watch?v=U2si60p6tRI
Posted on: Wed, 07 Jan 2015 18:17:25 +0000
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