About four months ago, to continue receiving treatment for my fibromyalgia I had to change from my longtime, familiar rheumatologist to a brand-new, completely unknown pain doctor. This change came courtesy of the new law passed back in the fall making it more difficult for doctors to prescribe, and patients to receive, pain medications (about which, MUCH more later).
For a few months prior I’d heard rumblings here and there about the change, but I refused to think about it until the day in October when I tried to call in a refill of one of my medications and found out that I couldn’t get it.
At that point I flipped out into Code Red, Total Freak-Out, Emergency, Defcon One, Panic And Survival Mode. I was consumed by the terror that I was not going to be OK, that I would no longer be able to get what I needed to take care of myself.
I managed to get one of the two remaining appointments that my rheumatologist had open that week, and somehow eked out enough medication to last me the five days until my appointment. He’s treated me for the past six years, knows that I’m stable and consistent in what I need to manage my pain, and knows that I don’t abuse my medication. So I was hoping that he’d still write for me, the only difference being that he could no longer call the prescription in to the pharmacy or add on any refills; I’d have to come pick up a new prescription in person every 30 days.
But he dashed that hope pretty quickly. Whatever his reasons he said no (again-about which, more later), and told me I’d have to go to a pain clinic from now on and have them manage that medication. At which point I transformed into a seething ball of rampaging emotions, slingshotting back and forth between raging anger and paralyzing fear.
On the one hand I was furious, F-U-R-I-O-U-S with everyone who’d had a hand in imposing these rules on us pain patients, people who almost certainly had never experienced anything near the levels of excruciating pain that we have to live with every single day of our lives. I’m talking about the kind of range that is so all-consuming that you can barely breathe, much less speak. That’s why I haven’t been able to write about this until now. All I could think about was how I wished that I could somehow curse everyone involved with passing this law. I wanted them to suffer by having to watch their loved ones develop excruciating pain and debilitating illness, and then not be able to get the medications that would bring them relief.
Then under the anger was the fear-terror, actually-of suffering. Not just the physical suffering, the pain that crackles through every moment, every breath, of every single day, but the emotional suffering that accompanies it. I’m terrified of the dark place I go to when the pain becomes unbearable and my mind tells me that the only way I’ll ever find any relief is if I’m dead.
So. I was able to get into the pain clinic the following week, and, being the OCD, anal-retentive, obsessive-compulsive firstborn that I am, I prepared a Ph.D.-level, multimedia presentation of all the things I do to manage my illness, in order to prove that I “deserved” pain medicine.
I was completely at the mercy of this person whom I’d never met before. I didn’t know him, and he didn’t know me. And there must have been at least twenty people in the waiting room with me, so I knew I would only get a “drive-by” kind of appointment.
So there I was, about to see a complete stranger, who had the power to say “yay” or “nay” on giving me a prescription, and I had to figure out how to convince him that yes, I really do need this medication to keep my pain at a manageable level, with maybe 5 minutes to present my case.
So, um, how the fuck was I supposed to do that?
(To be continued.)