My CGRP interview on Migraine.com

I always feel guilty when I return to the blog after a long absence, which seems silly. Like I need to explain myself. Life ebbs and flows  and I often find myself unable to do everything I’d like to be doing. I just can’t fit it all in, which I think is a pretty universal experience, especially adding in school-age children and chronic illness.

I don’t think I ever let everyone know that J got the job he so desperately needed to get at the local state university. So many of my entries over the last 2-3 years have focused on our poverty, and I hope we will be finally digging our way out of that hole. Our normal, non-government insurance coverage will begin in a few weeks and I can finally find a new doctor and file a complaint about Dr S.

I just started a second CGRP study, and Kerrie Smyres who blogs at The Daily Headache interviewed me recently for an article on migraine.com. It was published yesterday, please read it!

X is preparing for a theatre competition this weekend and starting middle school in a few weeks; Zo was awarded the roles she wanted in this year’s Nutcracker. I have been occasionally serving at my friend’s nanobrewery and contributing to a new online news source in my hometown, which I’m very proud of. In all, things are… dare I say it? Good.

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Migraine365: The Sumatriptan Series

In Fall of 1992, I believe, or maybe Spring 93, I took an Intermediate Poetry class with an instructor and poet named Tom Andrews. He was bald, soft-spoken. I don’t know if he encouraged me, after a number of missed classes and my explanation, to use my illness as muse; but then, I already had, in my fiction class and in my first poetry class. I felt the drive even then to make people understand: these “headaches” that had paralyzed me, left me shaking and bedridden and vomiting my entire life, when some people just took Tylenol for theirs. I was already using pain as art.

My first migraine poem was called “Sumatriptan” after the magical new drug whispered and passed between doctors and neurologists in hospital hallways like code. I was able to get my hands on this drug early, in tablet form, before it was accepted by the FDA, by driving the short distance to Canada. It was 1992. My first dose, a cylindrical wafer on the tongue, truly was a miracle, leaving me gasping in shock with tears streaming down my cheeks as every doom-spelling symptom vanished, the blind spots, the nausea, the weakness, the stabs of pain already emerging. 

As my experience with Sumatriptan grew, so did the poems. It was soon accepted by the FDA as an injection, (I still remember the Glaxo Auto-injector kit) which my 19 year old self ridiculously refused to use at first. “You will use it,” my mother snapped. And I did, with help from friends and boyfriend, and copying the numbered instructions down as another poem. “1. Remove Blue Cap From Syringe Case.”

Tom Andrews liked me. He must have. He graded my portfolio glowingly, writing, “You will have to sign your first book for me.” His own book of poetry, his second, came out in 1994, called “The Hemophiliac’s Motorcycle.” He was one. Who raced dirt bikes. A section of the book was called “The Codeine Diaries.” They were illness poems. He too had turned his pain into art.

Tom Andrews ended up giving me a B+ that quarter, which devastated me. When I went to ask him why, he intimated I may have done a bit too much flirting with my Nietzche-reading, hair-flipping writer friend in class and not enough active workshopping of others’ poems. Participation, bah. Would always get me.

I was very sad to hear that Tom passed away due to complications from his hemophilia in 2001. Around that time, J and I were getting married, having had our first art show collaboration a year before at the coffee shop / bookstore gallery where we’d met. “The Sumatriptan Series.” The first page of the series was published tonight on Migraine365. When J pulled it out last week, seeing it again took my breath away. 

Tom Andrews’ collected works, published by Oberlin College Press, is called Random Symmetries. I, myself, love random symmetries, and see them as signs from the universe that I’m on the right path. Another one I thought about as I worked with filtering and sharpening the Sumatriptan piece online was that I did have access to that landmark medicine earlier than most American migraineurs, having had a forward-thinking doctor, willing parents at $20 per pill, and the right geography. And now, just over 20 years later, having barely outlived Tom Andrews (he was only 40 when he died on a trip to England), I once again have access to a landmark migraine medication before most sufferers. The CGRP medications are creating more and more excitement, making more news, as success rates mount with few side effects, and it’s a preventative. I am so lucky to be participating in my study at MHNI, which just entered the open label phase. I have had one subcutaneous injection of the real thing, and 3 previous possibilities during the double blind phase. You know what I did today? I sat for 3 hours at the museum sorting dusty, 100 year old sheet music in a dimly lit room. Then I went to pick up prescriptions and bought a Reese’s Peanut Butter Egg, and I ate it in the car on the way home, while “Happy” was playing on my stereo, and the sun was shining as I crested the overpass and drove back into my small, fog-brightened city. It was freaking delicious.



Day 26, “everyday”

Today I woke up feeling like total crap. No one (including X) wanted to go to
horse lessons, but I had to, because J has become very afraid of X riding. So I didn’t put any makeup or bra on and decided I wasn’t going to get out of the car. I felt awful. I sat and listened to music and then when X came running out smiling, I felt glad and started the car. It didn’t start. I had been listening to the radio and charging my phone and drained the battery and hadn’t even thought about it. I couldn’t fucking believe it. I told X what had happened and told her to go back into the barn to watch the next lesson, and started crying as soon as she was gone because I knew I couldn’t get out and act civil and get the help I needed, I was a mess. I just didn’t have it in me. So J sighed on the phone and was like, okay, I’ll drive Zo out and jump it.

Through my open window, I heard the instructor say “What happened?” And I was just sitting in the car crying. She came out and said “you have a headache right? Don’t worry we can take care of this.” So I called J back and pretty soon the instructor’s husband pulled their car over and had it jumped. I just felt sooooo stupid. So then we drove home. I have been sleeping and resting and brooding ever since.

Here is today’s (yesterday’s) Migraine365 page.

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Text of Page:
09.14.14 | everyday Day 26 | Migraine365 | Even when I seem fine, the pain is percolating under the surface. I interact with my family, and I engage. But I still hurt. | Saturday again. A day for cleaning, and playing, inside and out. X had a friend over. |

On Second Thought

Maybe the Pain Management Clinic

Will actually be beneficial.

I like and respect Dr. S

And she recommended this.

The last two weeks have been brutal

It is easy to give up hope

But I did fight, and got this appointment

And while I fear it will go badly

There’s no reason to be upset yet.

Hold on, hold on this pain will end

And Tuesday will happen and then.

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Depletion

No one can help me.

Not my partner

Not my parents

Not my friends

Not my children

Not my doctors

Not my dog

Not god.

Everyone is tired

At the end of the ropes with which

I tie them to me.

I am tired of asking for support

Favors, babysitting,

Rearrangement of schedules,

For people to be strong for me

When they have their own struggles.

I am the one who has to fight

This debilitating, invisible pain

The never ending battle for care

And doctors who believe in me

And right now

I feel as though I just can’t

Do it anymore.

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Fuck Yeah Fibro Warriors!

http://americannewsreport.com/nationalpainreport/readers-sound-fdas-fibromyalgia-hearing-8822049.html

Migraine Disease also has stigma involved, but I can’t imagine living with all-over chronic pain and also struggling to be tested, diagnosed and treated for a new, misunderstood illness which so recently was thought to be completely psychological. My fellow chronic survivors, you go. You tell them. You fight and get the care you deserve.

~ thank you

I am amazed to have followers, in one day. Survivors whose blogs, chronicles of pain and triumph, I had already noticed and admired. The thoughtful comments on what initially felt like a frivolous post (changing the lyrics of a well-known song) show so much caring and community, understanding and acceptance of what is a tremendously isolating and stigmatized condition. I am so grateful and hope to live up to the examples you set. Thank you. ~ elizabeth

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