It happened again...I received another postcard from the Mid Florida Chapter of the National Multiple Sclerosis Society offering me the opportunity to be on the Run To Stop MS team at the Walt Disney World Marathon. This happened to be particularly poignant timing since I just met with my neurologist today to discuss new treatment options for my MS and the option we decided on kind of scares the crap out of me. All of the things she kept telling me about: that I need to think about a future with children and the quality of life I would have, the very real probability that I will end up disabled, etc...all of it was an all too real reminder of what I may one day be facing and it's frightening to think about.
In addition, this therapy option is frightening too. Currently, I'm on a platform therapy that doesn't seem to be modifying my relapses enough as I've had several additional enhancing lesions on my last MRI, after being on this treatment. So she decided that I needed a change and gave me two options: either the new daily oral medication that just came out or the monthly IV infusion. The IV infusion is a nice alternative to what I do now as I'll only have to go once a month to the doctor's office for a couple of hours to get the infusion done. As it stands now, remembering to take my three shots per week is a little sketchy. Also, it's become quite the pain in the butt for me, for some reason. Needless to say, the infusion will be a welcome change. The treatment scares me though. Though the findings aren't clinically significant, there have been patients who developed PML from this treatment, a disease that isn't reversible and is either severely debilitating or lethal. That is the scary part for me! The 'what if' factor will always be there!
All of this emotional stuff leads me back to the race. I really want to sign up and join. I feel really strongly about being part of the MS community and getting involved to help raise awareness and funds for it. In a way, my quality of life kind of depends on it. I think it would be amazing to combine two things that I care very much about and it would certainly be an extremely emotional race for me to finish! For that to be my first major race would be absolutely amazing I think. I think I'll check on some more information about this to see what it's all about. I'm not really even sure that I could swing it, financially, but this is something that's really important to me, so I would find a way!
In other news, I picked up my race packet today for the race Saturday! I was really excited to see the tech shirt for the race! The color is about as day-glo pink as you can get, but I love it! (And I'm sooo not a pink person!) The shirt is an awesome material and is really cute, so, yay! I also got an Orlando Magic window flag for my car. If the season ever starts up again, then I've got one to proudly display!
All set for Saturday and really excited to get going! Can't wait!
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