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.

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

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The cast of The Best Christmas Pageant Ever, December 2014

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

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

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

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

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

Everything Is Horrible – I mean, Fine!!!

My stomach hurts. J has resigned and is wrapping up his cases. And looking for a new job. The changes and our tension make the girls nervous and they are acting out, making it difficult for us to get anything done. We all have colds. I have a fever. And cold sores, which I get from stress. X has auditions tonight for the fall play.

Disability put me on Medicare and things are such a mess that I didn’t realize I had to actively decline it so now I’m on it and it costs money, and my pain therapist doesn’t take Medicare, so I have to call and straighten it out somehow, might be straightforward or it might be hell, but I hate stuff like this. Red tape beaurocratic stuff emphasizing my poverty.

And poor. We are poor. We are so fucking poor. Just applied for Food Stamps again and I know J will get a job and it will be a GOOD job this time, one that isn’t traumatic and pays him what he deserves, and we have help, but it is so scary right now. The cloud of unease has settled on my shoulders and in my chest. I walk around feeling like a zombie. 

School starts next week. A time of year that is always hard for me anyway. And expensive. And heartbreaking. And scary. And X goes to 5th grade camp like the first week. And her molar is loose and bleeding, which I guess is normal at 10, but a huge tooth gaping and filing my daughter’s mouth with blood periodically doesn’t feel normal.

Zo is pretty much an emotional basket case. And is starting first grade not knowing how to read.

And last weekend I had to go to the ER for my standard puking level 8-10 headache. I had to go twice. They didn’t give me multiple doses of pain meds this time and in fact the second time the nurse said “To give you more we’d have to intubate you.” I may have mentioned this in a previous entry; I was very depressed afterward. The first doctor kindly wrote a prescription for tablets which my parents tried to fill for me but because of my pain clinic prescription it wouldn’t go through, so they called my pain doctor, and she approved it because she’s awesome, but now this afternoon I have to go see her and she’ll know I went through my supply too fast and I am very nervous.

The CGRP injection didn’t seem to work as well this time, although I now  am having very few headache issues since the ER, just stomach stuff and anxiety. I get my monthly CGRP booster tomorrow. 

I feel like I’m standing on the edge of a cliff in the wind, and the girls are clinging to me, and all my effort is going to keeping them from falling or even being scared of the heights and danger. “It’s not that far! But don’t look down! This breeze is nothing but don’t let go! And don’t pick on each other! And don’t cry! I’M DOING THE BEST I CAN OH MY GOD!!!!! No- no- I didn’t mean to yell, it’s just this wind- I mean the breeze—”

And worrying does no good. I know that. I know I need to stay calm for them and for J and me too. But it’s so very, very hard.

  

A Tree Grows In Ohio

Today I ended up getting the worst headache I’ve had in months, severity-wise. I haven’t been sleeping well and didn’t make it to the girls’ joint birthday party.

And the dread and constant worry of poverty. Feeling really hopeless right now, and know my only job in the world is to make my children feel safe and happy through it all.

“Even the minstrels who came in the back yards and sang ‘If I had my way, You would never grow old’ were sad, too. They were bums and they were hungry and they didn’t have talent for song-making. All they had in the world was the nerve to stand in a back yard with cap in hand and sing loudly. The sad thing was in knowing that all their nerve would get them nowhere in the world and that they were lost as all people in Brooklyn seem lost when the day is nearly over and even though the sun is still bright, it is thin and doesn’t give you warmth when it shines on you.” ~Betty Smith, A Tree Grows In Brooklyn

[Sheet Music from the early 1900’s, which I am archiving at the museum]



NO MORE.

no more no more no more no more. 

No more living how I want to when we are so desperately poor. No more tattoos as birthday and Christmas gifts; no gifts for me at all.  No trips. No special treats. No piercings. No buying anything for fun, at all, ever. No boxes of hair dye, no make up.

Even if my ebooks and etsy shop make a modicum of cash that money is going directly toward FOOD and BILLS.  I can’t do this anymore. I can’t live with myself.

J has done everything he possibly can to get this promotion at his agency. He’s expecting them to drag their feet, which is what County agencies do. He SAYS he can freelance web stuff, he can sell a painting, blah blah blah. Just get a fucking job. I’m doing everything I possibly can while being on Disability and I know I can’t work yet but that is coming next. GET A JOB. GET A JOB THAT SUPPORTS THE FAMILY. 

Until then it’s extreme austerity measures for me. I’m done.

And by the way this fewer painkillers / more anti-anxiety meds plan failed. I’m still in pain and still anxious and the new meds make me sleepier than I expected them to. And, I’m going to run out of my pain medicine way too soon. Live and learn. Or, live, and never ever ever learn because you’re fucking stupid. Or, don’t live.



Migraine365 & Dr. Mitzi

My appointment today with Dr. Mitzi went very well. I explained that my headaches had improved in severity but not frequency, and that I’ve been having a lot of trouble with anxiety. She said she doesn’t often prescribe benzodiazepines, but that she would for me. I told her that I see a pain therapist twice per month and that things are just very stressful right now, and she seemed receptive. She asked if I’d tried Klonopin, and I said no. She actually ended up giving me both Xanax and Klonopin. The Xanax as needed during the day (it doesn’t make me sleepy) and the Klonopin every night for more longer-acting help. I told her I wanted to decrease my Percocet, so she did, and made it clear that a few months was all I’d get of the anxiety meds, but I was really really pleased.

Here is a screen capture from http://www.migraine365.com. J is working on improving the appearance of some of the originals so they’re clearer.



Also don’t forget The Migraine Diaries on Kindle! #1 available now for $2.99 

http://amzn.to/1zdORtr

#2: Election Day [2008] available March 17.

Thanks for your continued support!

~elizabeth