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!

Not So Silent

Two weeks ago today, my beloved dog Asia accidentally killed our new kitten. They had loved each other at first sight so I wasn’t as vigilant as I should have been while Asia was eating. I had every opportunity to pick Onyx up and move him out of harm’s way. I didn’t. I was the only one there. Asia gave a defensive warning nip and it broke Onyx’s neck instantly, which didn’t keep him from seizing and bleeding all over the floor. J came in at just the right time and we held him until he finally stilled. The girls saw nothing.

I have deleted every trace of him from our house and photo collection. All that’s left is one more grave in the Cat Cemetery in the backyard. No one blames Asia. No one blames me. But *I* blame me. I killed my family’s joy, after they so recently lost another young cat. I had every chance to prevent that horrific event, and I couldn’t. I DIDN’T. 

We thought we had a line on another kitten, and a plan to keep it safe, but that fell through. Now there are no plans. We didn’t celebrate Mother’s Day. I finally bought myself a watch at Big Lots and it was broken. Only what I deserve. Everything I touch dies. Even Kenya died when j was out of town.

I thought time would heal. But it hasn’t, I’ve gotten worse. I have been in bed for three days and eaten very little and I can’t make myself recover from this. The girls think I have the flu. 

My one hope is that by feeling so deeply I will prevent the trauma headache which always seems to follow such an event, invariably sending me to the ER. So far that has been avoided. But part of me would rather feel that pain than this pain. 

I just want to sleep, and sleep, and sleep.

The ultimate over-sharer, I told no one. I hope this blog post will help me finally begin to forgive myself.

  

The Migraine Diaries on Kindle

Late last night, I completed my first short story for digital publication, a much expanded version of The Migraine Diaries Three [1981] already found on this blog. J used a picture of me at the age I was in the story and created a Migraine365-esque cover for it; I am planning to publish “chapters,” about one per month.

The Migraine Diaries #1: Diagnosis [1981] can be purchased here for $2.99. Please, if you have a spare $3 lying around today, download a copy, and help me promote it ~ increased awareness about migraine and chronic illness benefits all of us in the pain community. Plus, I think you’ll enjoy it!

I have been writing stories, mostly autobiographical, since I could hold a pencil. Publishing my writing has always been a dream I never thought I’d accomplish. I appreciate how easy it is now to achieve this goal with ebooks, though I myself still much prefer to hold a book in my hands. 🙂

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Challenges: Personal and Otherwise

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From the very start, I have had mixed feelings about the Ice Bucket Challenge. Undeniably the online phenomenon, which quickly went viral, has raised a huge amount of money for ALS, regardless of what percentage of the funds actually get used for research (which is a discrepancy some have pointed out). Another truth is, millions of people have now heard of ALS who never had before, or maybe had only vaguely heard of “Lou Gherig’s Disease,” though a lot of them probably wish the annoying videos would stop clogging up their news feeds. Which is how I feel about it, but also even more, vaguely, completely put off. And I feel like a horrible person for being so irritated.

Is it because of the inherent cliquishness of it, that because of the pay-it-forward part of the challenges, friends are named to either dump ice water over their own heads or donate $100 within 24 hours? Did I begin to feel left out because no one challenged me, “chose” me, a feeling similar to not being chosen for a team in gym class? Such an embarrassing thing to admit, but… probably. Another reason is maybe that I wish my own illness were getting so much press. Migraine has taken over my life, IS my life in some ways. I can’t work; I’m often in quite severe pain, with accompanying symptoms like nausea, vomiting, and photo/phonophobia, so I miss out on a lot of social activities and family time. There is stigma involved, which results in not being taken seriously by peers; being labeled as a “drug seeker” in emergency rooms; not being respected by doctors. So man, it would be awesome if there were a challenge to increase awareness of migraine and headache disorders, to raise money for more research into a very disabling disease which affects 36 million Americans. (I posted on Twitter a few weeks ago that I wanted to initiate a “Baseball Bat Challenge” for migraine awareness: hit yourself over the head or donate.) But certainly, I don’t begrudge ALS. It’s wonderful that more people are becoming aware of it, and it is far more disabling, in the end, than what I go through. So no, of course I’m very happy for ALS to be getting this shot at stardom. My annoyance could also be because people are engaging in this inane, uncomfortable stunt ostensibly to get out of donating money, even though most of the dumpers and dumpees have probably donated as well. But the whole idea started as a way to GET OUT OF donating money, to shiver and shake under a torrent of ice water instead. Because ANYTHING would be better than to send money to a charity, right? Or maybe, underneath that, anything would be better than having a chronic, possibly terminal illness. Look at us, we’re so fit and healthy that we can dump ice water over ourselves, WE don’t have ALS! Or any illness, for that matter – bring it on! We’re so strong, we can take it! But… I watched a good friend’s family participate in the challenge, when my friend’s husband is dealing with his own disabling chronic illness. So that’s not completely true either. The wasting of water? I am from the Toledo area, which had a water restriction recently due to the algae bloom in Lake Erie. So that too. All of the above, and none of the above.

And now, a headache specialist from West Virginia HAS come up with a challenge for migraine awareness: Hot Wings for Headaches. At first, yes, I rolled my eyes. Couldn’t they have come up with something better? It sounds kind of dumb, a silly copycat. Eat some hot wings, don’t drink water or eat anything else for 30 seconds, and then donate $25 to the American Migraine Foundation. If you can’t / don’t want to eat the wings, donate $50. But really, wings? When the chicken wing industry is notoriously cruel and wasteful? I’m not a vegetarian anymore, but those poor chickens. Or the fact that it requires you go out or order in, when some can’t afford to do that. But you know what… I started thinking, there are some serious PROS to this challenge. There are vegetarian alternatives to traditional hot wings, and the number of migraine families who participate probably won’t be significant enough to make any impact on chicken wing factory farms. [I am picturing an Onion headline: Migraine Awareness Stunt Causes Nationwide Chicken Wing Shortage; Super Bowl Sunday in Jeopardy] It also wouldn’t be necessary to go out, though restaurants offering wings are typically inexpensive. It might even give inspiration to families and friends who don’t go out often, motivation to go to a fun restaurant and have a good time for a good cause. Or, make some wings at home! Eating wings is pretty messy for sure, maybe a little uncomfortable for those who don’t enjoy spicy food, but it is nothing like ice water over the head.

So I’ve decided, YES, Hot Wings for Headaches. Eat some hot wings! Make a video, challenge others! Or, just donate money to the headache charity of your choice. Make an Ice Bucket Challenge video, AND eat some wings. At the same time, even! Or, just donate to both charities. Or since so much money has been raised for ALS already (and seriously, yay!) just donate to migraine research, which is tragically underfunded. Here are some good organizations: the American Migraine Foundation, which is the migraine charity chosen by the creator of Hot Wings for Headaches, Dr. Dave Watson; the Migraine Research Foundation; the UK’s Migraine Trust; and the American Headache and Migraine Association.

Here is Dr. Watson’s Hot Wings for Headaches video:

And lastly, just because you probably haven’t seen enough of them, right? Here are a couple of my favorite Ice Bucket Challenges:

David Lynch and his espresso trumpet; Sarah Palin (not a fan, but hilarious); and this crazy GIF.

As always, thank you for reading. Have a wonderful Labor Day Weekend lovelies!

yours in spoonie solidarity ~elizabeth

On “The Daily Migraine” Best Headache Blogger List!

I am so honored that The Daily Migraine listed my blog alongside greats like Diana Lee (somebodyhealme), Teri Robert, Ellen S, Kerrie Smyres of The Daily Headache, and Michael of Migraine Discussions.

I am also on Twitter as @headcase73, for you tweetheads!

This could not have come at a better time for me, as I’ve been struggling with validation and authenticity in my treatment and personal life. So thank you so much, Lisa, creator of a The Daily Migraine, for making this list of active headache bloggers and advocates, and for putting me on it. 🙂

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#MHAM Photo Challenge, Day 19: Self-Portrait

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I take a lot of “selfies.” I am proud of how I look, even at 40, and my tattoos add another dimension to my appearance. The middle image in the above triptych is of the tattoo on my left upper arm, a silhouette of me in kindergarten, with a “happy brain” and stars added to it. I envisioned this particular tattoo during a hospitalization, and it is kind of a migraine self portrait. The image on the left was taken almost a year ago at my cousin’s wedding, and the one on the right I took several months ago.