In keeping with the The Wizard of Oz references. After meeting with my local neuro to discuss my trip to New York, and to sort through the treatment options and suggestions I brought home with me, we came to the conclusion that the three treatment suggestions, including the one, tecfidera, that I had thought might be a good idea to try, were designed to be effective in cases of relapsing MS. And whereas I am pretty certainly in a progressive stage, it didn’t make any sense to change from the regimen I am on, cellcept, along with various symptom management medications.
Just as I had unconsciously harbored the hope that IMSMP in New York would present me with something that would at least improve at least one of my symptoms, (Leg cramps? Sure, we can take care of those!), I had apparently unconsciously let go of the hard-won acceptance of the fact that there is no “better,” at least not for me. With a possible breakthrough in stem cell research or something other startling discovery (and I can still hold out hope that something will turn up…), there might be a cure, or a treatment that can offer “better,” at some time in the future. But I am not holding my breath.
I am, though, trying my damnedest to turn my focus to making the best of this bad situation, and spend as little time as possible dwelling of the suckitude of it. I’ve seen here and there over the years people asking in various forums (fora?), if there is any silver lining in having multiple sclerosis. Aside from possible lessons in humility, and a deeper understanding of the difficulty, shall we say, of living with disability, and that there are plenty of people living with far more challenges than I, I can’t think of any. It pretty much just sucks.
A shout out to Mitch, who maintains the excellent blog Enjoying the Ride, for turning me on to The BS of my MS: Making sense of a disease that doesn’t make sense. At first glance, this is yet another personal-experience-with-MS story, but as I got into it, I found it to be one of the most honest appraisals of what life with MS is like. No punches pulled, no whining, no pity party, just straight talk. It reminded me of the sadly missed, and mysteriously vanished blog, Multiple Sclerosis Sucks. (There still seems to be a link when I Google it, but it doesn’t load on my computer.) In any case, I raced trough this book, and highly recommend it. Chapter 10, which discusses depression, loneliness and fear, is especially recommended – I learned a lot from this chapter, and I think it would a valuable read for those with loved ones who have MS. Many insights.
Next up: THe MS Book Club – what I’ve read. What have you read?