I realized today, as I rode the elevator up from the parking garage, that I’ve been coming to UPenn for meds for two and a half years. I’ve known my nurses for a long time. They smile and wave as I sit in a bed, getting juiced up for the month.
Tysabri. What a game changer.
It took me awhile to try it. I spent 2014 in a downward spiral of frustrating physical handicaps – Lydia (my walking cane), numb limbs, the inability to climb stairs — and my favorite, when my right hand would just stop working out of nowhere. I’d been on Avonex, Copaxone (my least favorite), Gilenya (oh lordy, the testing) and finally, Tecfidera. Nothing worked. My body was sliding into utter disintegration and chaos. I burst into tears a lot, got huffy and wallowed in feelings of defeat and despair. Dr. M prescribed Tysabri three times before I actually made an appointment. Three times. Three mailings full of shwag I would never use (bags, neck pillows, etc etc) and a welcome packet with smiling people who looked less like MS patients, and more like catalog models.
My first infusion (after sitting for hours in a room with John and Dr. M hashing it out) was on December 17th, 2014. Hubs came with me because the entire experience was a little overwhelming. My second infusion in January 2015 was three days after I was diagnosed with shingles (that’s right, shingles — I was thirty-five). I didn’t really notice a difference, but John did. Around April he casually mentioned that I could walk from our living room to the bathroom without reaching out to hold walls and countertops. By July of 2015 I wasn’t even using Lydia that much. I would forget her at home on work days. We moved into our new house, with two flights of stairs, and I was okay. I had to hold onto the railing and take my time. But I was okay. Slowly, it got easier. I made the transition from taking one step at a time to one foot after the other. It was a little like learning to walk all over again.
I wore heels again for the first time in March 2016. I still can’t do stilettos, but a nice wedge or a thick boot heel? Yes, please! And then, this June, I got my first manual car for the first time since 2012.
I still have tough days. I find the brain fog comes a lot more often, and a lot earlier than it used to. But I ride my bike every day. I eat as well as I can (which isn’t always great, but I do my best). I come in for my medicine without fail. All these lovely things help me live as close to a normal life as I can hope for. I won’t give up wine (I know plenty of MS peeps who stopped drinking and I agree, it doesn’t help the brain fog at all, but man, it’s so tasty). I still have cheese and gluten (albeit sparingly). I try not to think about the terrible things my medicine has caused in other people. Because for me, Tysabri gave me back my life.
In a small way, I have come to associate Fridays with medicine. I know that Fridays are great for the working world — last day of the week before the weekend. In my world, every fourth Friday is when I get to come into the hospital to fill up on whatever it is that makes my life better. I’ll take it.