One week into tapering off Savella, which would not have been possible save for my paranoid hoarding of medicines I’m prescribed, death is not yet preferable but an ax would be. Or dismemberment by train. I am disjointed as it is, a slow drip of water sieved out of noodles, legs that periodically go missing, arms I can find, but don’t want to, because there is an ache deep in my shoulders and armpits like excavation gone awry. A long probing finger wiggles for purchase behind my breastbone, poking me tachycardic, 137 bpm at rest. Side effects. If there is nothing good in the world any more, I’m supposed to remember that’s a side effect, too.
The timing couldn’t have been worse. The fall semester approaches. I’m struggling to wrap up summer grading, and plan fall classes, and wrap up writing projects, and make any progress at all on a dissertation that seems increasingly impossible, and I have to shunt all of that to the side because I’m going off a medication that lessened my pain and fatigue and helped restore me to a semblance of who I am, not because I want to, but because Trump’s rhetoric about destabilizing insurance markets has finally struck me with tangible, bodily consequence. My formulary dropped it. I’m priced out. I don’t have a choice.
My doctor and I agree going off the drug is the best course of action for now, but the taper makes me upset and stupid, the idea of experimenting with drug doses and new cocktails makes me upset and stupid, and I don’t know why I bother to think or write about it, or if in this state, or as it gets worse, I’ll retain the ability to think or write at all.
This is the story, if you care.
The automated refills at Duane Reade never work, so I’m not initially surprised my refill request for Savella has been delayed. I phone it in. As my supply dwindles, I call again, and am told it’s a computer system issue; the paperwork hasn’t been processed. I wait a day and call again, and this time I’m told by the pharmacist: “Oh, sorry. Your formulary must have changed. It’s not covered anymore. That’s why it’s not going through.”
Oh, sorry. I could have killed her. Instead I say, “Oh. Thanks.” I check my formulary, and yes, as of this month, weeks after I paid my premium for the semester, coverage has changed; Savella has been dropped.
It’s been safely covered without complaint for six years.
I take my last pill that night. I received no notification, no phone calls, no email alerts. I try to numb myself to the idea of stopping cold turkey. I call the insurance company and am told my pharmacy benefits haven’t been entered into the system, but Lyrica is covered, and Savella is not.
I’ve stopped a drug in Savella’s class before. That should have been the reality: a full-stop like a body being hurled at maximum speed into a jet propeller. Everything should have disintegrated in the face of nausea, brain zaps, fatigue, stiffness so overwhelming it imprisons me in bed, which is how it used to be circa 2006, before I was being treated.
Because I am paranoid, because I have been betrayed by insurance companies and pharmacies before, because once I was forced to go off Lyrica for a weekend because of a failed refill request that made me temporarily aphasic and left me with a lingering occasional stutter. The reality is this.
I save whatever I don’t take. My collection includes leftover tablets of Savella, a smaller dose from years ago, when I was originally titrating up to a therapeutic dose. My doctor didn’t have samples, couldn’t help me with this, except by writing a new prescription that would cost money I don’t have.
Paranoia is the only reason I can go off this drug gradually, to a certain extent, until I run out of that supply, after which hell will spread for me and invite me for a ride and I won’t have a choice. As the fall semester approaches, I’ll have to cope, somehow, with the disorientation, the fatigue, the stiffness, the nausea and reflux and vomiting, the electric shorting of the brain that interrupts thoughts, sentences, classroom management, the sheer inability. I got out of bed this morning, and it took all the energy I have. I am writing this blog post, and as soon as I hit publish I will pay the price for expending like it’s a credit card, not cash only, upfront, like a black market exchange where the rates are never fair.
There are no words under the sky to express how angry I am that this was not my choice.
I don’t want to ask myself, each time I construct a sentence, is this the last coherent thing I’ll write? I don’t want to second-guess myself, going into fall teaching, with am I going to disappoint my own pedagogy, and let my students down? I am telling myself that, for weeks to come, it’s going to be withdrawal talking, no matter how gently I taper down, it can’t be helped, the last time I came off something in this drug class I was laid flat, or forced to disembark at random subway stations to vomit onto the tracks or above ground, on the roots of fenced-in trees. From that experience, I could draw you a map of all the good places in Manhattan to retch, or to curl into a fetal ball, or black out and come to with nothing stolen, nothing out of place.
I didn’t ask to be back here. The only consolation I have is that, if not for the paranoia I should not be stoking, it would be so. Much. Worse.