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]
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.
have barely gotten out of bed since that last entry
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.
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
#2: Election Day  available March 17.
Thanks for your continued support!
I finally gave in and went to the ER last night for a migraine I’d had since Monday. I’d gotten as many as 6 hours of relief at a time from Imitrex, but the thing just kept coming back. It was the longevity that broke me… not the severity.
This streak of not needing the ER has been one of the longest of my adult life. It certainly is by far the longest since I went chronic in 2004. 38 weeks. 9 whole months. I would have loved to have gone a whole year, but I need to see this for the victory it is.
Oddly, I didn’t get an IV with fluids last night, but I was treated relatively well and I got the meds I needed in two IM shots. They took a little longer to work, but lasted longer. And, fortunately, I wasn’t too high on the pain scale, which is how I try to do it now, to go before I’m at that point. I’m not always able to though, my May 30 ER visit being a prime example since that was my worst headache ever.
I mentioned in a previous entry that J thinks I’ve been getting the real drug in the CGRP study. On Wednesday, the open label phase begins and I will receive the first subcutaneous injection of what we will all know is the real thing. Unfortunately, the dose is decreased for open label. So if I have been getting the actual drug, this slight improvement I’ve had will become even more slight and I could regress a little, which I’m not looking forward to. But, if I have been getting the placebo, I should improve more (the former improvement being due to some other factor).
I see Dr Mitzi tomorrow and I am nervous about asking her for anti-anxiety medication. I really feel like having some would help, but I don’t know if she prescribes it. I guess I will just have to find out. I know she’ll help me any way she can.
Well, it’s time for me to get up out of this bed. I am going to head into the Museum for a few hours – it will just be nice to go somewhere, and I can’t think of anywhere else I’d rather go. ❤️
Don’t forget about The Migraine Diaries #1, available on Kindle! (Click here to check it out.)