There’s a Reason We’re Supposed to Do It Every 28 Days

          People often ask me if I feel “better” now that I’m on Tysabri. Since I’m an official patient-advocate for Biogen Idec, the manufacturer of Tysabri, I’m completely honest and sincere with my response, but it’s normally the same response given each and every time.
          Tysabri isn’t designed to cure symptoms. It’s designed to stop the progression of RRMS and to prevent future attacks and life-altering brain and spinal cord damage. Despite this explanation, I also add that I do feel better since starting the Ty-Train more than a year ago. I notice that I have more stamina and seem to have a better quality of life. My symptoms, most of which I still experience weekly or daily, just don’t seem as terrible as they once were. And, as of my last MRI, I don’t have any new lesions on my noggin or spine. Sixteen lesions and holding!
          But there is a definite reason why we are supposed to be good boys and girls and receive our Ty infusions religiously every 28 days. I’m being reminded of this today and it’s not been a gentle reminder. I skipped my infusion this past Friday. It was unavoidable. I had to travel to Vermont and the TOUCH Protocol associated with the drug doesn’t allow us to have infusions earlier than every 28 days. I could have had my infusion the following Monday (only a three day delay), but then I’d throw myself off my late Friday afternoon “don’t want to miss a bunch of work every month because of my Ty hangover” routine. So, I’ve postponed the infusion until Friday of this week.
          By last Friday I was already showing the wear and tear of life with MS with deep circles and bags under my eyes. I think the pot-bellied pig in Vermont looked better than me. I slept a lot during our trip; the only thing that made my napping while on a pseudo vacation acceptable was that most everything in Killington was closed anyway. The hubby and I skipped the hiking and biking in the mountains and chose to relax at our resort instead. Upon our return, I went back to work, a little weaker than normal, but knowing that the Ty-Train would be in the station within days.
          Then my rude awakening hit today. It started with a dizzy spell in the shower (it’s been months since four, giant bottles of shampoo and body wash beat me up as I splayed myself out on the shower’s floor). Then it followed with a day of complete and utter weakness. If I didn’t know better, I’d think that pot-belly gave me the swine flu this past weekend. I was fortunate that today was the day my housekeeper visited. She made my messy home sparkling clean again and kept an eye on me in the process.
          It’s also been awhile since I’ve become mopey and whiney and teary-eyed about having M.S. All that self-pity hit this afternoon as I worried about the next two days – two, long, important work-filled days until that infusion. People with M.S. often pledge not to let M.S. run their lives. On days like today, when it takes all the energy in your body to hobble to the kitchen to make a PB&J sandwich, it can be hard to man-up and push on through.
          So, I spent part of the afternoon reminiscing in the Sunshine, reading old blog posts – posts describing similar days like today, all of which I survived, some of which I’d forgotten. I also reminded myself of the hubby’s mantra of IAR (it’s all relative) and decided to pick myself up by my bootstraps and to focus on the positive instead. Of course the text message from my stepdaughter, alerting me that she was coming to my rescue with chocolate peanut butter ice cream to wash down that PB&J sandwich didn’t hurt either.

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