mybeautifulmigraine

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

Many people ask me if there are surgical options for Chronic Migraine…

https://migraineagain.com/about-migraine-surgery/

💜”I get how powerless my migraines can make a person feel. They make me feel that way, too.”

💜”I understand that the people really want to help, yet when offered these types of simple solutions, the complexity of my neurological condition somehow feels diminished. My heart beats heavier, and I want to cry out how my migraines are far from simple.”

https://migraine.com/living-migraine/worst-advice/

#ChronicMigraine #MigraineAwareness #MAM2019 #sowingtheseeds #facesofchronicmigraine

Sowing the seeds to me means advocating for, connecting with, and supporting other chronic migraineurs. I was so alone before I found others who struggled like me. I hid and felt like a freak. Finding the migraine community has saved my life and helped me find my voice – for myself and others.

When I start to lose my shit…

https://migraine.com/living-migraine/managing-multi-day-intractable-migraine-attack/

You can see from the timeline chart how much time can be invested in a migraine. Attacks are easily multi day events. So when considering Chronic Migraine is 15 or more attacks a month, you’re easily losing almost every single day. Prodrome and postdrome phases can be unbelievably debilitating. These are not just headaches, migraine is a neurological event. Chronic Migraine positions your neurological system into a continuous “fight or flight;” it becomes hypersensitive.
I remember realizing this was happening to me in ~2010.

While working as a nurse, my coworker would call to me to get my attention. It would often startle me (I felt like a cat jumping, clawing into the ceiling, hair sticking on end. Lol).

It was confusing and baffling. A laid-back chick all my life, I had NEVER been so easy to startle. My nervous system was starting to fray and go into a state of constant overdrive. Too many, many migraines.

#ChronicMigraine #MigraineAwareness #MAM2019 #sowingtheseeds
djk #MyBeautifulMigraine

The war is on! With your own body. And there’s no honor in it, only the grace you gift yourself.
Just kill it; kill the head.

“I can’t do this anymore.”

“You can’t NOT do this. Get. Up.”

#ChronicMigraine #MigraineAwareness #MAM2019

https://migraineagain.com/what-to-know-about-migraine/

…It’s not you; it’s my Migraine…

The Pain is not the worst thing. One of the most disappointing aspects of Chronic Migraine is all the wasted time. Wasted time, like ripped and crumpled calendar days littering my whole world. I can see Life happening, and I want to participate like I used to. Like Scarlett O’hara at the Atlanta Ball, I want to dance! And dance and dance!
I remember participating. I have pictures from the past of me participating in Life! Yesterday, it took 7 hours of dark room/bed and 3 hours of prep with rest to go out on a 1.5 hour dinner date. I can smile. And truly, my heart is happy and I feel overwhelming love and gratitude for those 1.5 hours. Each and every minute is bliss to savor… it’s like a warm ray of sun on your skin when you’re chilled, like the sweet intoxicating scent of orange blossoms on an unexpected breeze, it’s like feeling the caress of fine white sand between your toes when you walk on the beach… Every minute of Life is a delicious delight.
And today… Today, is all recovery from the 1.5 hours, and the weather. But… maybe tomorrow will be a good day.🌞 Maybe! And I’ll be ready!🌞 I will be ready to participate! Please don’t give up on me!
It’s a different life, a different way to live. I was unprepared.

#ChronicMigraine #MigraineAwareness #MAM2019 #speakyourmigraine #sowingtheseeds #facesofChronicMigraine

Good morning all! It’s 04:00 hours and sleep eludes me… Painsomnia is so much fun! Not. But I cannot sleep. There isn’t enough ice in the world, and the pain of migraine and RA won’t let me sleep.

Monkey bottoms, the weather is an angry bastard here in the Hill Country and my head and Rheumatoid has been caught in it’s wrath.

This was a special day for husband and me… our silver anni; we’ve both been so looking forward to it. Twnty five years of love and marriage! 25!!!❤

In our quest to be Normal people (or rather, my Normal husband to have a Normal wife), we just wanted to go out to dinner tonight. ❤

Oh, Migraine has been hell all day; a kitchen sink migraine… where every med is failing. I woke in hell at about 11:00… triptan fail, opioid fail, burning through ice and chugging caffeine. I tried to clean with the kids in between suffering.

Husband made dinner reservations!😍 and I kept working on my disorder. Work work work.

FINALLY the next med, fioricet succeeded!! That was about 15:30, so I thought it prudent to get showered and ready for our big date.

It took me hours to get ready… because showering, dressing, applying makeup and drying my hair is absolutely equivalent to a marathon. 🙄 But that’s why leaving enough time for suffering and working is prudent!👍 I was even able to throw together tacos and corn for the kids’ dinner!

*Extra points scored!*

It may have taken me ALL DAY, but WE MADE IT!!😍 Hooray!!!

And at our celebration dinnie tonight, I had 2 delicious glasses of prosecco cuz I knew my migraine later would return regardless. Lol.

And hello, awesome horrible STORMS… causing indescribable suffering:

Raining cats and dogs. But the systems are moving in and out.

So… we were out ~ 1.5 hours. 🎊🎊 Party fast. When we got home, we watched our wedding video with our daughter. It was so fun and funny to see mega 1990’s styles! Oh those BIG glasses! Ha! Marc and I danced to the last song just like we were dancing on the video:

Can I have this dance for the rest of my life?

Will you be my partner, every night?

When we’re together, it feels so right.

Can I have this dance for the rest of my life?

And Marc even remembered the dip at the end… with the kiss.💋

Ah, Romance.😍 It is not dead.☺️

My head is burning thru ice every 30 min and I cannot get to sleep. Another phenergan may be in order. 🙄

But we had a nice nice time tonight. For ~2 hours, I had a mini life. And I could share with the people I love.😍

Moments. Tiny moments. That’s what I can fight for; and that’s what I will be grateful for.❤
Sending out love to you all!💜❤💜

* * * * *

No measure of time with You will be long enough, but let’s start with Forever.
Happy Anni & Love you Always & Forever More, my Love, my Soulmate, my Best Friend ❤❤❤❤
#silveranniversary #25yearanniversary #andtheysaiditwouldntlast

Neither of us knows what we are doing… but bumbling and playing at life together is such great fun (of course we are both babies in birth order. Lol). Always goobers.
When Marc asked me out in high school, I knew he was really asking to marry me. He was that kind of guy. Six months later, I went on a weekend trip with my parents, and I *missed* him. That’s when I knew I was in love.
#25yearanniversary #silveranniversary