I stayed in bed all morning. Yesterday I had to give myself a Sumatriptan injection first thing; the morning before I’d needed to take a tablet. No migraine this morning, but maybe postdrome. In a sort of desultory way I scrolled through Facebook. I don’t always check my “On This Day” memories, but I did, even going so far as to read the blog post that came up because I remember it being significant.
When I went downstairs, I had a very uneasy, not-quite-anxious, not-quite-depressed feeling, an ache below the rib cage that made me feel helpless and vulnerable. My depression has been very well controlled lately, so I felt like I needed to figure out the source of this. Postdrome? Trump angst?
I finally realized maybe it was from reading the blog entry.
It was titled “WWED: What Would Elizabeth Do?” and was about the fact that I didn’t like who I’d become in the year since quitting my job and in fact barely knew myself. At the time I wrote it three years ago, Dr P had only recently dumped me as a patient after I bared my soul to him. I hadn’t yet seen anyone in my neurologist’s office, so I was without medication. It was before my first CGRP trial, before Dr Mac and Dr Mitzi, right when I decided to taper off Cymbalta, before John got his social work job. It was probably one of the lowest points of my life.
In the entry I described my crazy, desperate run through the hospital parking lot after Dr P so ruthlessly attacked me. I’d forgotten that I’d been sobbing, tore away from J and fell, scraping my hands and knees. Reading the descriptive prose I vividly remembered how worthless and hopeless I’d felt, and scared I had been. It’s hard to explain how much being rejected or misunderstood by a doctor feels like the end of the fucking world for someone with a chronic illness. I had literally nowhere to turn.
That helpless, hopeless feeling today morphed into an uneasy vulnerability. While I am much happier and more fulfilled now, with new friends, new activities, new jobs, I am unfortunately at a bit of a crossroads again with my medical care. J has a fantastic job now at our local state university, as a full time instructor, which is another reason for my increased satisfaction now as opposed to three years ago. However, one of the most attractive features of a good job, for me, is the health insurance. I had been on Ohio’s expanded Medicaid, which was life-saving, but limiting, so I was excited to be on regular private insurance again and am particularly grateful for it now that the NOTUS is trying to repeal all aspects of the ACA.
But there was a paperwork issue. J filled out all the many many pages required for our family to be covered, and it all went through fine. What he didn’t know is that almost immediately, he would have to fill out yet another spousal form for 2017, as he will have to every year. He was behind on checking emails, falling into the “ignorance is bliss” ravine that so many of us do when overwhelmed.
On January 1, my coverage ended. I haven’t had insurance since then. J is trying to get it worked out, but because the open enrollment period had ended, now the HR people need my Disability paperwork, my Medicaid and Medicare paperwork. Which J found and gave to them. And then he didn’t hear anything. He had to go to his dean for help in speeding it up. This week, he still hasn’t heard anything new about the progress. Bills are piling up. The uncertainty of not having coverage constantly makes me feel on edge. Scared.
I finally have an appointment with a new family doctor in March, Dr. C. My spoonie friend Julie, who is local, found him first, having read reviews that he’s excellent with complicated cases. But again, uncertainty. Fear. My wonderful, sweet pain specialist, Dr. Mitzi, who refused to conduct pill counts and seemed so concerned with me personally, has apparently caved in to the federal pressure and taken an extended leave of absence. She does have a nurse practitioner, Judy, but she is considerably less warm and makes me very nervous. They are trying to find a replacement for Mitzi, but I have read enough horror stories from people in my support groups that I know it’s a possibility the new doctor will be a strict asshole who will not want to keep prescribing to me. Uncertainty. Fear.
But. The pain clinic isn’t closing, and Dr. C seems very promising. Even without insurance, if worse comes to worse, I can pay cash. Things with Dr. M (the neuro) are going okay. I haven’t had to go to the ER for six weeks. J is doing well, the girls are doing well. I have my work for migraine.com, which is a dream come true, and BG Independent News, which is so great I would never have fathomed my involvement in such a thing. Working with journalists I’ve always admired, in a field I chose for myself twenty years ago. Lucky. I’m lucky.
I have to let this false fear wash away. I have so much that is good right now.