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Sunday, May 29, 2011
Amidst the grasses overgrown
Wild and nourished by days of rain
Awash in a sunlit morning
I found myself wandering
I'm not sure
A silent sip of joy?
Before the hour long drive to my neurologist I needed to be outside, paying attention to the beauty of our lawn and it's diversity of uncut abundance...before the noisy mower and it's blade...before news of what soon would be revealed on a light-box displaying slices of my brain and new information digested.
Yes, a tiny taste of joy, like this small insect momentarily lost in the pleasure of clover nectar...that was what I was searching for and found.
Turns out there are some new lesions in my brain after all, a rebound effect of stopping the Tysabri. Despite efforts to prevent this with three months of pulse steroids, there is inflammation again…these things happen. This coming week three consecutive days of IV Solumedrol should calm this down. Two more mri’s of my t and c spine to make sure there is nothing going on down there will also be done later this week (or early next.) And then…. drum roll please…as long as all of my blood work and eye exam are A-OK, and the insurance company is agreeable (so far, I’ve been very fortunate that way)…I will go for a six-hour observation as I take my first dose of Gilenya. (They have to monitor my heart rate; this is standard with this very new drug). My veins will be very happy to have a break from infusions after the steroids next week, because Gilenya is an oral medication. Disappointed that there are new lesions? Yes of course, but I have MS, this is how it goes. I’ve shed intermittent tears since Friday, but have been doing my best to look at the blessing of being born at a time when new drugs are coming out every year (in some cases every few months). I am so lucky that there are treatments that might slow down this MS train for me. They don’t work for everyone. So far several have not worked for me. I am hoping that this one will.
My parents are still here visiting until Tuesday morning. It has been such a gift having them here with us!
Expect a quiet week on my blog as I receive the steroids and rest when I can (until they wind me up and I’m watching movies on Netflix all night long, because I won’t be able to concentrate on anything else.) And then I’ll likely be super tired the following week after that drug leaves my system…but gradually, hopefully, I’ll start to feel pretty good again in a few weeks, just in time for summer vacation with my family. Everything will be ok. This is simply life, pleasant, unpleasant, and pleasant again. Simply life.