Day 12: |some days are normal|

Here is yesterday’s Migraine365 page:

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And a close up of the journal page, about Alice In Wonderland:

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Text of Page:
08.30.14 | Day 12: {Some Days Are Normal} | Migraine365 | Zo and X played with their Furbies outside | elizabeth had a low-level weather migraine all day.| X was sick with a cold and rested & played all day. | The trees were blowing all day long. 50 mph wind. Sunny. 84. | journal page: “We watched the original Disney Alice In Wonderland. I learned recently that while Lewis Carroll did suffer from migraines, he hadn’t yet, supposedly, when he wrote Alice. Still, the migraine-associated size confusion/ hallucination symptoms were named “Alice In Wonderland Symdrome.” I can’t believe I’d never seen it all the way through! It was amazing. Zo was very creeped out but X loved it.”

X is having a friend sleep over for the first time tonight, which feels like quite a milestone. Because of my illness and some aspects of our (small, one bathroom) house, I get anxious about the girls' friends being here, but it's way more important to me to help X enrich her relationships than to give in to insecurity about social class, especially when I normally don't give two hoots in hell and take pride in being the "hip," different mom. (Of course money would be helpful, but if I had some, my house would still probably look like this.)

So X and M are upstairs in their pajamas, playing with their Furbies, X's cool day bed pulled out to make two single beds side by side, for the first time. Zo is down here with J and me. I don't know if anyone will be able to sleep upstairs tonight.

Tomorrow is my brother's and my joint birthday party family gathering, which is going to be at their house rather than my parents'. I'm looking forward to it and hope we're all feeling well.

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Day 11: peanuts | I was a different person then

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Today the weather is very warm and windy, with dark gray clouds like the kitten’s marble fur quilting a pattern across the sky. The humidity and higher temperatures are not helping my headache situation one bit, nor is the fact that I barely slept last night. X is still sick and was running a fever this morning, so we postponed her friend spending the night to tomorrow in hopes that she’ll be well enough by then.

We did get an exciting email today. X tried out for her first play recently, Charlotte’s Web. There were twice as many kids trying out as there were available parts, so we weren’t surprised when she didn’t get one. It was still a great experience for her though, and I made sure to tell the director that she would still want to be part of the back stage crew. I opened today’s email from the troupe eagerly, anticipating information about when X should start attending rehearsals, and read to my delight that she actually WILL get to be onstage for a moment or two, which made us SO happy. Maybe me more than anyone else, since acting was one of my very favorite things to do in high school. X will get to be one of the fair goers in attendance when Wilbur receives his special ribbon. Charlotte’s Web is the first book I read to X at bedtime, about five years ago, every night until she fell asleep, then the next night backtracking to the last scene she could remember, until we both wept as Charlotte died and Wilbur greeted her baby spiderlings with “salutations!”

The circle of life. Coming full circle. The Lion King, to which twenty years ago on its opening night I took my two beloved little cousins, ages 10 and 7 (?), at a time when they were staying with my family and desperately needed me, and I them, and I was taught at not yet 21 years old the unconditional, lioness love a heart-and-soul (if not biological) mother can feel for her daughters. Yesterday was the elder’s birthday; today their baby sister’s, born that year, now turning, of course, 20, the same age I was that tumultuous summer.

And now we are watching another Disney film, the trippy and wonderful Alice In Wonderland, which J watched over and over as a child, and the original annotated text through which I have poring for a quotation and image to use as a future tattoo (“I have changed several times since then,” or “Any road will take you there,” and endless others) which I just told my artist friend Wednesday as her vibrating ink-bleeding needle buzzed and stuttered into the tender skin of my right ankle when she asked, “So what are you going to do next?”

Medical full circle: my new neurologist’s office is in the same practice as my very first, whom I started seeing in maybe 1984 and who actually only just retired. I switched to a neurology resident at the university hospital because of a preventative my original guy introduced me to but would not let me continue taking: Sansert (Methysergide). It worked but had potential side effects he felt were too dangerous for long term use and I disagreed. I was able to continue taking Sansert for around ten years on and off, until I wanted to get pregnant, and it was pulled from the market around then anyway. Now I’m heading back to that practice for very similar reasons: the wonderful, open-minded resident is long gone and I’ve been stuck with staid and rigid Dr T and C. I am still my own best advocate.

Other current full circle completions: my very first tattoo in 1996, a crescent moon, tattooed over the other day with a full moon eclipse, and loopy letters in my own handwriting encircling my ankle: “all in all is all we are” from Nirvana’s All Apologies, which I know I’ve described a few times already. The same day of the tattoo, my brother sent me a text that he had accidentally / on purpose listened to Led Zeppelin for the first time since he was 11, because “Over The Hills and Far Away” had been playing on the radio when he left his house, and he kind of liked it, so he played Houses Of The Holy on Spotify on his drive down to our parents’ house with his little daughter, my niece SoSo. I have loved Led Zeppelin since I was, well, 15 (which corresponds to my brother being 11). And then when I arrived at the tattoo studio, my artist just happened to be playing Led Zeppelin III in her room: “The road we choose is always right, so fine.”

When J and I first became close friends, he was working on his senior art project, a gorgeous comic called Agency Girl. After his girlfriend dumped him and he freaked out, hiding for a few days at his grandmother’s house, I managed to save his job at the coffee shop when he no-call-no-showed and upon his return gave him the most meaningful gift I could offer: a smooth, oval thumb of rose quartz, an opaque semi-precious pale pink stone I have been casually, continuously collecting ever since finding a fist-sized chunk outside my fourth floor dorm room window on the narrow, icy brick sill (which faced only the winding road, distant bike path, muddy river and low rolling hills) right after the Blizzard of 93 dumped a foot of snow and cancelled classes. Following my gestures, J gave me the most meaningful gift he could: he made ME the gorgeous, ethereal heroine of Agency Girl, a tall, willowy, tattooed red headed goddess wielding a magical pink crystal and saving the world.

And now, a new comic book. And all of us the stars.

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08.29.14 | Day 11: Peanuts | Migraine365 | Percocet Pick-up | X Kat | Nature Valley Gluten Free Granola Bars TRIGGER | Zo Fox | Kenya & Sumatra & Asia

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

Day 10: Stuff

Yesterday was an annoying hodgepodge of a day; today was much the same.

Here is Day 10’s Migraine365 page:

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Text of Page:
08.28.14 | Day 10 “Stuff” | Migraine365 | Every day… every morning the same thing | Ohio Department of Motor Vehicles “When I renewed the plate they said…” | NEURON | Drop off Zo / Pick up X [The school called.] | “…my license was expired” Driver’s license renewal & correction | X came home sick. We watched TV together and played games on our devices. | That night… REBOUND|

Day 9: all in all is all we are

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I don’t have much to say today. I had to deal with the Ohio DMV, to get my license renewed; X came home sick; I printed out the forms for the CGRP studies and picked up medicine for the kitten. I am trying very hard to not take any imitrex even though my head hurts. I don’t want to get in a rebound cycle, which I’m quite likely to do at this point. Thankfully, I get my Percocet tomorrow.

J is continuing to work very hard on the 365 Days of Migraine project as we get closer to putting it on Kickstarter. I decided to change the format of my blog titles because every day is pretty much a “365 Days of Migraine” day now. So I’ll just tag them that way, and simplify.

Thank you for reading! 🙂

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08.27.14 | Day 9 “all in all is all we are” | Migraine365 | Journal page: “elizabeth woke up today feeling a lot better than she had the previous two days. She took the girls to school and went to her tattoo appointment. Around dinner a panicky migraine struck. It’s hard when they come unexpectedly. It’s always hard, but sometimes you know they are coming. After taking an imitrex, the migraine faded, leaving behind a very sleepy and washed out elizabeth. As I finish this page, I can hear her upstairs, helping our daughter X find her earring and put it back in her ear. It is 1:30 am, and the earring incident has caused the house to be filled with happy girls and Zo and elizabeth laugh in the bathroom. Doing this every day has helped me realize everything I am grateful for in my life. – J”

365 Days of Migraine: Day 8 “PANIC (new moon)”

Right now, I have a headache. I had a small one this morning, for which I took half an imitrex, and I felt good about that, considering yesterday I needed two.

At noon, I went to the tattoo shop to get my very first tattoo, a crescent moon I acquired in 1996, covered by an eclipsed moon with an anklet of loopy text, a line from Nirvana: “all in all is all we are.” It was a very good experience, but a few hours after getting home I started to feel sick. I have taken another imitrex and a half, the girls are home from my parents’ and I fixed them a quick dinner and am now waiting for J to get home and then I will go to bed. Counting the hours until I can pick up my Percocet on Friday.

Here is yesterday’s migraine365 page:

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Yesterday, in a way I’m sure is familiar to other marrieds with one disabled partner and one who is altruistically employed, we discussed things like paper divorce, which would increase my SSI payment by $600 per month, and bankruptcy, from which we’d gain I’m not exactly sure what. But we got ourselves into such a bad, panicky state we could barely look at one another. I told J to go down to the bank to talk about refinancing the house; and I went to the utilities office to find out what help we could get with our power. We learned a lot, and do feel somewhat better today.

We are also continuing to be excited about the 365 Days of Migraine project. We’ve gotten some very positive feedback, and we love doing it. It helps us to communicate better, and we like feeling as though we are making a difference to others’ lives.

Tomorrow I need to call this new neurologist’s office. I am always so hesitant about bringing new doctors into my life; it’s scary, because I depend on them so much. But anything would be better than what I have now. Almost.

I am also waiting to hear back about a study I might participate in with the new CGRP drugs at MHNI. For one of them, I’d need to stop taking my daily magnesium, B2, Feverfew, and Periactin. But I am super eager to be part of something so exciting to the migraine community: new preventatives developed just for migraine. Instead of off-label like beta blockers, tricyclics, and anti-seizure meds. I am hoping if I do participate, I will be able to blog about the experience…

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August 26 2014 | Day 8 “PANIC (new moon)” | Migraine365 | Wake Up | stressful appointment | MONEY | Bath time | family time | new moon |

**addendum: I feel I should explain why I was “able” to get a new tattoo the day after discussing divorce with J as a possible solution to our financial insolvency. It is a bit like the food stamp / smart phone argument, which makes me sick to my stomach. Poor enough to need government help? Then you don’t get nice things. Even if you got them before the crisis. Ugh… anyway, in this case, I traded a spa gift certificate to my mom for cash, and squirreled that money away for my birthday. I did try to insist to J that I wouldn’t do it but he said, wisely, that the money would not even cover our monthly car payment and the impact on my psyche of not getting the tattoo would be far worse than any immediate help it would bring. “One hundred dollars will not make or break us either way,” he said, “but the tattoo will make or break YOU.”

365 Days of Migraine: Day 7 “bad start –> good finish”

Yesterday I woke up with a bad headache and easily vanquished it with one Imitrex tablet. This morning, my similarly bad headache took TWO Imitrex. I am not shaking it off so easily today. I had my appointment at Pain Management, with the nurse practitioner this time, and was very nervous as she examined my file and said “I’m surprised your neurologist allows you to take Percocet.” I nodded, non-committal. I got my prescription but sweated it. I have a referral to a new neurologist and just need to call them.

Here is yesterday’s 365 Days of Migraine page:

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August 25 2014 | Day 7 “bad start –> good finish” | Migraine365 | panic: “Crap not again I hate waking up like this… no injections FUCK! | relief: “Thirty minutes… wow… one imitrex tablet and now I can get up… okay X to school… breakfast… the day. Monday.” | rest: “sigh… still tired… but all is well” | the comeback: “I love my life.” | journal page: “I am really so grateful for imitrex. 20 years later, it is AMAZING to me that I can wake up in the throes of head pain that registers a 7 on my pain scale, take a simple tablet with my morning meds and soda, and be virtually pain free within 30 minutes. Yep, still pretty much the miracle old Dr Mather promised when I was hospitalized at 18 and he whispered the magic word in my ear, the first drug developed just for migraine, coming soon: ‘Sumatriptan.'”

Thank you for reading, following, my blog by the way, and the 365 Days of Migraine project. Your support means everything.