Flashback Friday

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.


My girls on top of the Cape May lighthouse. X, Zo, & K, June 2014


The cast of The Best Christmas Pageant Ever, December 2014


Zo & me after her first Nutcracker performance weekend, Dec 2014


Me at the Historical Center, where I frequently volunteered from 2014-2016


Part of our theatre family. I’ve been on the advisory board since early 2015.


Me & J at the Chamber of Commerce dinner with BGIN last month


My migraine.com profile. I will be going to a conference in Philadelphia in March!


plus c’est la mème chose

When I saw the missed call and voicemail from my doctor’s office on my phone during my dinner break at work, I wasn’t worried. After all, I was set for an appointment there in two days to receive Botox for Migraine, a long and intrusive procedure requiring 31 injections and all sorts of hoops to jump through. It was very exciting for both me and the office, as it was set up right before Dr H’s departure and I would be their first (though not Dr. K’s, I made sure).

When I heard Kat’s voice projecting tinnily through my little iphone speaker, however, I became alarmed. Due to the severity of my illness and frequent phone calls, I’ve become something close to friends in my acquaintance with Kat, who is Dr. H’s sister, and Melissa, with whom I share many mutual friends. So I knew that Kat was upset when she haltingly began to explain that despite what Medical Mutual had told J when he called weeks before, they were more than likely going to reject the claim because Dr. K is not a Board Certified Neurologist or Pain Specialist. Kat’s voice broke as she ended the message, and I immediately called john, tears streaming down my face. They’d told him. THEY TOLD HIM THEY WOULD COVER IT. I was emotionally and physically prepared. I’d taken most of the day off work, as had john. And I was desperately counting on the possible, probable even, temporary relief (it worked briefly for me before, in its experimental stages, with fewer injections). When he answered I could barely choke out words, and at first, though clearly disappointed, he said “We weren’t sure it would work anyway,” and “You can get it with Dr T, set it up in August.” Those were not the fighting-tooth-and-nail responses I was hoping for, so I said okay through my sobs and hung up. And sat on the hard floor in the staff room at work and cried.

When john called back in about 10 minutes, he said to my relief that he HAD called Medical Mutual to demand answers. He told me the person he’d talked to had been very nice, and had said that nothing had been denied, and in fact she was still sure it would be covered, as Dr. K was on their “approved list.” The person said “We will approve it, the doctor’s office just today sent in some different procedure codes, so those have to be reviewed.” I was relieved; I wanted to believe. It was going to be okay after all. We also discussed that while expensive, the procedure didn’t seem likely to cost more than $1300, and we’d just gotten our tax return. My parents paid when I’d gotten it done before, and I thought I remembered something like $700 per treatment. We’ll get it done, john and I promised. I was keeping my appointment Friday, and one way or another, we’d get it done. I talked about it on Facebook, researched it some more, and went to bed feeling relatively optimistic.

The next morning, however, everything was shot to hell by 11am. I tried to wait for the office to call me, as they said they would, but Medco Health got to me first, the prescription side of my insurance. I was told that my prior authorization to receive more Imitrex than my plan allows (9 tablets per month) had been denied. My doctor’s office had failed to provide evidence that I get more than 4 headaches per month!! Ha ha ha ha ha…..

That, I at least knew, would be easily remedied as it happens almost every time my prior auth has to be renewed. “I get more than 4 headaches per WEEK,” I told the lady, who blandly told me to submit my appeal in writing to blah blah blah. I hung up (wouldn’t it be great if we could still “slam down” our phones?) and called the doctor’s office. Imitrex, no problem, Kat said, so sorry, we’ll remedy that, but the Botox was still a huge source of confusion. I was put through to Lilly, the nurse, who said that because they were told it would most likely be denied, they hadn’t yet ordered the drug so it wouldn’t be there by Friday, and it was going to cost THEIR office $1000 and she had no idea what our final cost would be but it would be more than we could pay. My throat started closing up. While we were talking, going through the whole “but they told my husband,” “well they told us,” Medical Mutual called to talk to Lilly and I was put on hold. Denied, she said when she returned, no way around it. I started to cry. Lilly was very kind. I hung up and collapsed onto the couch with a very concerned Zo, clutching my quiet but still glowing phone, my last instrument of hope all morning. I tried not to shriek or sob hysterically in front of my daughter, swallowing helpless anger and frustration and grief and feeling the inevitable headache tide somewhere in the briny inner dark. I turned my wet face to my daughter and wordlessly touched my nose to hers. She dabbed at a tear with her fingertip. “I got you, Mommy,” Zo said. And I was glad.