I think I'm suffering from PTSD. No, the other one: Post-Tysabri Stress Disorder. Having stopped Tysabri in April, I have gone "bareback" ever since. Risky behavior, you say? I'm fine. Really. No hospitalizations, one little flare in July, but prednisone knocked it out on the first dose. No harm done.
I've tried to approach managing this disease the way I approach writing. I always try to write to my strengths. Hindsight is one of my best. I have a good memory and an organized thought process equipped with a bad-ass editor. It's come in handy for story ideas and doctor appointments. Procrastination and intellectual laziness are up there, too. If I get tired of doing research, I use what I've learned and then wing it.
Decisiveness is a strength that has always taken the number one slot. I boldly go where most writers have gone before--but with my own little twist. Like Ishmael in Moby Dick, once a poet who took to the sea, I saw this as an adventure, something I could embark upon thoughtfully and report on as both observer and participant.
Taking Tysabri was a risky decision since death was a possible outcome, but was I intimidated? Nah. Others had gone before and lived. The decision to stop was even easier, but met with a little more resistance by professionals. I have been stubborn and taken charge of my quest for the ideal monster weapon--and come up short. My thoughtfulness has given way to single-mindedness and not a little paranoia. Now I am like Ahab, scarred and crazed and poised on the foc'sle, harpoon in hand, waiting.
It isn't that I don't have choices. There are Gilenya and Novantrone. But I've developed a prejudice towards immunosuppressants. I could have my veins roto-rootered in Albany--but I don't even know if I have restricted veins and I'm too lazy to see a vascular radiologist to find out. The main thing is, I don't really believe any existing therapy is going to be the charm, just as I believe that neither Copaxone, Rebif, nor Tysabri did me one lick of good.
I know I'm not alone. The problem is that the choices beyond the CRABs are so new that there are no long-term studies showing how they might trouble us down the road. The new drugs dazzle like high beams on a Mercedes, and I'm an over-the-hill deer that has no business standing in the middle of the road at night.
Before the metaphor police show up, let's get back to Ahab. There's something missing. Crouched at the foc'sle, harpoon in hand, waiting for that chalky mug to break the surface; what am I waiting for? Not the monster, I have no fear of that, it's been taking small bites out of me for years. Now, for the first time, I'm empty-handed.
I wait, crouched on the foc'sle, peering into the mist, searching for the biggest, baddest (but safest) harpoon insurance can buy.