365 Days of Migraine, Days 40 & 41

I am trying not to feel as though increasing my Cymbalta again is a defeat. I have been fairly debilitated by depression for about six weeks; I’ve waited long enough. I’m hoping that the improvement will come soon.

A longtime family friend commented on Facebook today that she thinks of Migraine365 as a “graphic journal.” I thought that was really perfect, very apt for our book project as it continues to evolve. I have ideas I hope J will implement: a sort of “profile” page for each of the four of us; a family tree page for which I already have some photos of my maternal grandfather. I am going to start using the term “graphic journal.”

I also hope, as my optimism and energy increase, that I can sit down finally and expand on “The Migraine Diaries” stories I began here in my blog, and publish them on Kindle. We desperately need to change our financial situation. J is starting to look in earnest for a higher paying job. Money can’t buy happiness, it’s true. But I am ready to stop feeling constantly ill and ashamed, on every form of assistance available, borrowing and taking and burdening, accepting charity, hiding my head.

Money buys freedom from fear.

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Top Ten Reasons To Buy A Migraine365 Shirt

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I’m showing my age here, aren’t I? When I went to college in the early 90’s top ten lists were all the rage, thanks to David Letterman. I must have had 3 or 4 different t-shirts from my university, my honors college, my dorm… all top ten lists. And pretty
lame, really. But after a lot of really depressing entries I’m going for humor here, lame and dated or no. Ready for some desperate nostalgia?

TOP TEN REASONS TO BUY A MIGRAINE365 TEE:

10. Because lord knows, you probably don’t have enough white printed t-shirts!

9. But seriously, do you have any with a logo as cool as this one? As a friend pointed out, it says so much with so little:

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8. There just aren’t many migraine products out there for us, especially if you’re tired of purple and awareness ribbons.

7. If you aren’t a migraine sufferer, you won’t feel weird wearing it. The logo and title are for the book project, meant to appeal to everyone (“a story about life”). You’ll dig it the most!

6. Apple recently used a similar image for its iOS 8 Family Sharing plan, so you know how very hip you will be.

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5. The shirts are high quality Gildan brand 100% cotton. No funky too-high collars or too-stiff / too-thinness. My mom has a Gildan “Live United” shirt and it is SUPER nice.

4. At $20, not the cheapest tee you’ll ever buy that’s for sure, but most of the funds will directly support my Migraine365 project, helping with needed supplies like paper, watercolors, artists’ pens and pencils, and also the amazing amount of time and effort spent on each day’s piece.

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3. The Winter holidays are fast approaching! What an incredibly unique Hanukkah, Christmas, Solstice, or Festivus gift you could present to the art lover or migraineur or anyone in your life!

2. This limited edition shirt will only be available for THREE MORE DAYS!!

And the number one reason to buy a Migraine365 shirt…{cheesy drumroll}

It would make me and my family so very very happy!!

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Please follow this link to Ink To The People to purchase your Migraine365 shirt now!

xoxo
~elizabeth

Days 34 – 39 | Charlotte’s Web & a hard week

I have been soul-dead this past week. So much so that I know I have to return to my original, higher dose of Cymbalta after so carefully and triumphantly decreasing to 30 mg six months ago. My headaches have been some improved, so my depression got
worse. That’s what happens. I don’t know if it’s because of the increased time I suddenly have, which is fairly empty; or if my serotonin just doesn’t know what the hell to do. Something has to be terribly wrong in my brain at all times, right?

Anyway, I have been hoping for a short period of adjustment, that I could wait this out, but it got so bad yesterday that I began the increased Cymbalta. I had to, for my family.

Here are the 5 days of Migraine365 I missed.

Day 34: Headache Season

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Day 35: Charlotte’s Web part I

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Day 36: Charlotte’s Web part II

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Day 37: Charlotte’s Web part III

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Day 38: Charlotte’s Web part IV

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Day 39: Charlotte’s Web part V

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Days 32 & 33 | Intractable Migraine Continues

More searing head pain. More phonophobia. More allodynia. More cognitive impairment. More worry and frustration.

We got a little behind on Migraine365 and J worked hard to get these pages done today so I want to get them posted. I will come back and do the text some other time.

Days 32 & 33, “Migraine Weather” Parts I and II

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Pain, pain go away

Don’t come back another day

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Since this headache started early Saturday afternoon I have taken many, many medications. I had a list here (just because it’s kind of fun), but am removing it because it worried my mom (“Mama Migraine,” I think that’s cute). Every time I have an intractable migraine, I take many varying drugs, frequently; and in all my years of shaking up my medication regimen in this kind of do-or-die situation I have never had a problem. As long as I’m watching my acetominophen intake for my poor liver, nothing I take is dangerous because I stay within the recommended dosage… it’s the frequency I sometimes flex to my benefit. Can you blame me? Extra Imitrex or the ER? I do always keep an eye on the possibility of Serontonin Symdrome. I did have that happen once, but it was from NYQUIL. The dextropromorphan put me over the edge. I had a bad cold. Even then, I did not have to seek treatment.

That said, I hope I don’t end up in the ER for the first time in nearly 4 months! I had really bad neck pain Friday, and this headache spread from my right forehead to my temple, behind my ear, the crown and back of my head, and back into the right side of my neck. Saturday night it switched sides and became forehead only, and now it’s back to its original location. This type of headache is hardest to get rid of. I’m going to dive deep into my zone now and meditate on relief.

xoxo

31 Days of Migraine365 | “Information Overload”

Today has been a good day.

J and I both are feeling pretty triumphant about completing our first month of the Migraine365 project. We’re not quite sure exactly which direction to take at this point. Considering Kickstarter, or contacting publishers directly. At the same time, I feel like 365 pages of chronic illness is a bit much for an actual book. What we do know for sure is that we’re pushing forward. A page a day. 365 Days of Migraine.

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Text of Page:
09.18.14 | Day 31: Information Overload | Migraine365 | Refinance the house. Call student loan companies. Go to work. Do the dishes. Call the debt collector. Out of pants. Wash some clothes. Walk the dog. Remain composed. REMAIN COMPOSED… 001101001100111010 | Blue sky and clouds on the drive to Otsego. | Remembered all meds for play practice. Costume needed tomorrow – skirt and white shirt. 10 pm – now all black and plaid flannel!! | Weather: partly cloudy, 68° | Pain score: 6 |

Day 30: Necessities

I’m at X’s play practice – Charlotte’s Web – at a high school about 10 miles from where we live. Zo’s kindergarten best friend, A, is the sister of “Wilbur” and the little girl who plays Joy the baby spider. Their mom is the president of Youth Theatre Club. It all seems super convenient and sort of meant to be. A is here today as well, so they’re playing. X is a crew member, and on stage during a few crowd scenes. She wasn’t needed until this week, but she is running around backstage carrying props, a permanent grin on her face, as comfortable as if she’d been here since the beginning, when this is her very first play and it’s almost tech week already. I am SO proud of her. Seeing this makes it all worth it.

Because this week has been rough. Our poverty is crushing me. Depression is inescapable. I have been getting a lot of headaches, and am running low on pills. Not sleeping enough. Having nightmares when I do.

I was thinking about my relationship with pills. When I was little, I was already getting frequent blinding migraines and nothing would help them. I’d lay in bed for hours with a wet washcloth over my eyes. A parent would sit with me and rub or push on my forehead. I remember them giving me codeine cough syrup sometimes. But nothing really worked well until my diagnosis and subsequent Fiorinal prescription at 9. Those magical green capsules were my first ticket to guaranteed pain relief. And wow, not only did a pill erase the pain, it would leave a peaceful sense of happy well-being in its place. So I began to associate my only method of real pain relief with that peaceful and happy glow from the bultalbital. And… bultalbital, especially in combination with another ingredient of Fiorinal, caffeine, is quite addictive. So at a very young age (X’s age now, which boggles my mind) I became dependent on that feeling. When I had that feeling, it meant that no pain was anywhere on the horizon, when I had been living my life in a state of fear, anticipating and dreading the next headache. I got Fiorinal 3 with codeine when I was in high school, and the connections in my brain only increased, and any narcotic is much the same.

So it’s a feeling of comforted safety. It’s the only time I’m not afraid of more pain. And even though Imitrex also effectively obliterates migraines, usually even better, it and others like it don’t have that effect, because they aren’t tricky like opiates. So, in conclusion: for the last 30 years, I’ve been trying to balance the real benefit of narcotics with my complicated desire to be always, always taking them, for that safety. Even a false safety. My brain believes in it.

The play performance is the 25th, 26th, and 27th at this same high school auditorium. It’s going to be a very long week.

Here is today’s (well, yesterday’s) Migraine365 page. I had forgotten my medication and just knowing I’d done that caused anxiety… and, well, you know. I drove home, through the glaring sun, 15 minutes on country roads with a 6. Never again. Well, actually, who am I kidding? It will happen again. Hopefully, though, not again for years.

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Text of Page:
09.17.14 | Day 30: Necessities | Migraine365 | HOMEWORK HELL | play practice [some pig – radiant – terrific] | Days are getting busier. What self respecting migraineur leaves home for 3 hours without meds? A 15 minute drive through the county at a 6. THAT’S WHAT I GET | LEAVE NO MEDS behind | poverty makes everything hard | Pain score: 6.5 | Weather: partly cloudy 68° |