​My Job, the Chronic Migraineur

mybeautifulmigraine

by D KOBAYASHI
My job doesn’t pay…in fact, my husband and I spend thousands upon thousands of dollars on “my job” every year – lost work as an RN, procedures, therapies and treatments not covered by insurance, new supplements well-meaning people swear by, expensive devices and treatments that might help.

I work every hour, every minute, to beyond exhaustion. There is no coffee break, no downtime, no weekends, no vacation. No time off despite excellent behavior. And yet – my job doesn’t look like a job to most people. Everyone who sees me thinks I’m a-ok as I pretend to be Normal. I even spend energy faking it for my family. They have no idea how hard I work to appear better than awful. And I want so much to be Normal. I dream of waking up one day – and all of this struggling will just *poof* be over.

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Making Invisible Illness… visible

Some have noticed my piercings💎 It’s been Donna’s own therapeutic attempt to make my invisible illness visible… #ChronicMigraine …I placed a piercing for every year I’ve been Chronic … there’s 11 in there and since I’m running out of room with no cure in sight, I may just stop there. Lol😁 It’s been an interesting conversation starter. Some people ask: “Wow, didn’t all those piercings hurt?” And I just giggle… and think about my ~18 multiday migraines a month x11 years (not to mention my 4 drug-free child births – which, surprisingly people relate to easier 🤷‍♀️)
I do love my bling… and it’s always been my belief that if you’re going to migraine chronically, it might as well be beautiful. 💜❤💜

djk #MyBeautifulMigraine
#MigraineAwareness #MAM2019 #MHAM #sowingtheseeds #speakyourmigraine #migraineart #invisibleillness

#ShadesForMigraine

June 21… Migraine Solidarity Day… spread awareness 😎

#MigraineAwareness #ShadesForMigraine #ChronicMigraine #MAM2019 #MHAM

My kiddos😎 Corey actually had a terrible migraine today. 😢💔

My friend posted in support!!❤ I was so overwhelmed ❤

My husband sent this!❤

Family history

It doesn’t happen too frequently, but Corey woke with a migraine today. He’s got a maxalt on board but may have to call in sick to work if he can’t get relief. 😦 While all my spawn have had a migraine in their lives, Corey is truly my episodic migraineur. Watching your child struggle with migraine is incredibly overwhelming and horrible. I’ve worked a LOT with him about how to manage his disease: track episodes with a phone app, make healthy choices, take magnesium (and other supplements) for prevention, identify his triggers, and treat episodes very early and aggressively. And he does an amazing job. It sux he is genetically predisposed to migraine because of me, but I am aware he also inherited awesome traits. 🙂
I dream of a world where there are no more migraines EVER.

#MigraineAwareness #MAM2019 #MHAM

Notice of Decision

I carefully reviewed the facts of your case and made the enclosed fully favorable decision.

Letter from Social Security Administration came in the mail on Friday, June 14. Since it was written in legal speak, I wanted to clarify with my attorney to make sure I was reading what we thought we were reading.

The judge has ruled me disabled since January 2013. This has been a 5 year endeavor for us. And as it comes to a close, I’m full of ambivalent emotions. I’m approved… and that’s great… and awful.

We hope to pay off our mountainous debt with the lump sum… and perhaps my monthly funny money will keep our ends meeting. A family of six, kids in college, one getting married, chronic illness… it’s all quite expensive for only one salary.

Today I’m coming out of a 3 day bender migraine… it’s postdrome abyss: bad head pain, photophobia, weakness and lethargy. I showered! Hooray! Got dressed and am puttering… some cleaning, some laundry, some tidying, putting some dinner together. Resting right now. This is disabled.

Allodynia, the funny word

Learning about MIGRAINE!
ALLODYNIA.
It’s a funny little word that means a lot to peeps with Chronic Migraine. Most docs don’t mention it. My own allodynia began while I was changing from episodic to chronic. It was not unusual for my scalp to hurt the day after a migraine bender, but soon I noticed I had trouble wearing necklaces or even collars. I felt almost like I was being strangled in a subtle & weird way. Creeeeepy. It made no sense to me. I was a jewelry fashionista who could no longer wear necklaces 🤔 When I started connecting with more Chronic Migraineurs, I started learning more – about crazy things like allodynia. Puzzles explained!
#ChronicMigraine #MAM2019 #MigraineAwarenessMonth djk #MyBeautifulMigraine

9 Things Chronic Migraineurs Want You to Know- Migraine.com

Chronic migraine is exhausting. Imagine a job that you could never leave, not even for a short vacation. A job that is on your mind every moment of every day. A job that wakes you up in the middle of the night demanding attention. A job that causes severe physical and mental anguish, wreaking havoc on your body and your life. Now imagine having to do another job on top of that, like raising children or holding down a paying job. And add another job on top of that, one that requires hours of doctor’s appointments and treatments, pharmacy trips, fighting with health insurance companies, and research each week. The physical symptoms are enough to cause exhaustion, add all the other responsibilities on top of it and we’re pretty well wrecked.

#ChronicMigraine #MigraineAwareness #MAM2019

https://migraine.com/living-migraine/9-things-people-with-want/

Diagram of Chronic Migraine

a) medicated with migraine meds
head, ice crown wrap to numb brain
pain, which is a #8

b) phone nearby, a connection to the
world, support groups, & method to
call family for help, if needed

c) TV remote; I am comforted most
by action movies playing at very low
volume, somehow heroes give me
strength & inspiration

d) family member has put a lovie near
me to let me know they are thinking
of me

e) example of migraine symptom
dysautonomia – my inability to
regulate normal body temperature;
my body is cold, my head is encased
in ice, and my feet are burning up

f) night table mini pharmacy – this
mini pharma keeps me out of the
emergency room, also has lip balm,
essential oils, Himalayan salt lamp,
coke (caffeine helps migraine) & water

Me & my Migraine reading Facebook today…It’s a real bender, a #8. It’s Father’s Day and I’m only able to text my dad. Not able to do anything very special for my husband. Thunderstorms came through this evening. It’s been 2 days since I showered and washed my hair. Just gross and so ill. I’ve been sick so long that I wouldn’t recognize wellness if it slapped me in the face. I move around this life as a sick person in pain. And it sure isn’t as fun as it sounds.

The Photophobia

Migraine is not just head pain:
Photophobia or photo sensitivity is a huge battle…it’s not like: “Oh, hey, it’s bright.” it’s like: “Omg, it BURNS like fire; I’m going to die.”
I developed severe photophobia as I was going episodic to chronic…I noticed I’d be standing outside and couldn’t understand how everyone was not needing sunglasses like I was. What’s happening?? No doctor explained it to me…I researched and discovered it myself. I struggle with photophobia with or WITHOUT migraine. It’s ANY light…and severely in the dark with car headlights, etc. I haven’t been able to open my bedroom blinds in 4 years and it breaks my heart. Just one of the things I don’t love admitting.
Photophobia, phonophobia, aphasia, nausea, dysautonomia, clumsiness, allodynia, extreme lethargy/fatigue, vertigo…the sexiness of Chronic Migraine!
#ChronicMigraine #MAM2019 #sowingtheseeds #MigraineAwareness djk #MyBeautifulMigraine