Retreat Migraine, San Antonio, April 2019

Like a dream come true! The first ever migraine specific retreat and conference.

My husband came with me as support people were invited as well. The Embassy Suites was gorgeous and the food too amazing (cake at every meal. Ugh! My diet! Lol)

~250 Chronic Migraineurs … all together for support, education, fellowship. I can’t say enough about the organizers… every detail was perfect.

When we met for presentations, we waved out hands instead of clapping… clapping noise can be a migraine trigger. Ow. And there was so much to clap about.:)

The most exciting part for me was meeting real life heroes: bloggers and advocates I’ve admired from afar. I was fangirling.

It was pretty amazing. Everyone there *got it.* If you couldn’t get to an event because of your disease, they took care of you: delivering meals to your room, encouraging rest. Swag bags filled with amazing gifts, giveaways, representatives from companies like Gammacore, Cefaly, Ajovy, Emgality, etc.

There were information sessions, sharing and support groups. As well as complimentary chair massage and a Salt Cave experience:

At night, they slipped a note under our hotel room door:

The most affirming experience I’ve ever had! We discussed stigma, stories and advocacy…

So very happy to be a part of #RetreatMigraine and I pray they’re able to do this yearly. It was everything we need.

I did get a migraine my first night but it felt really *okay* to do so. 🙂

Migraine Demands

When your chronic neurological disorder forces life changes that suck. Pity party for one, and then move on…💜 Tomorrow has the opportunity of Great Hope🌞
#MigraineAwareness
#ChronicMigraine
#speakyourmigraine
#invisibleillness
#ChronicPain
djk #MyBeautifulMigraine

Bleeders

Some migraines are so intense that they remind me what migraines really are. It’s like, the other 16 migraines that month were just practice ones, prepping me for the bleeder or a bender that is this one.

Last night I went to sleep feeling wretched. Too wretched to visit with my nephew and his fiance… I hid in my bedroom in my cloud bed, migraine medicated, hot head wrapped in ice, barf bag at the ready. I suspect my RA is flaring as well because every inch of my body ached… I kept heat on my hips and thighs, my calves complained, and my feet were in my ice booties, burning right through the ice. The TV on low, I waited for sleep to come.

It did. Finally. Sweet painless sleep. I dreamed I was at the Migraine Retreat (which I am so excited for and is fast approaching… I dreamt I was meeting new people but concerned that I hadn’t packed anything. Lol).

I woke at 0615 to get the kids up for school. The horribleness of last night was still very much with me, although my head wasn’t as bad – mostly my allergies were out of control. My eyes begging to be clawed out. Spring has sprung. As soon as I could, I went back to bed. Slept. Woke at 1000 with a screamer migraine. Body still flaring. Treated the beast and went back to sleep, worried I had stuff to do today and was not yet able to do any of it.

Woke at 1300. Head still reeling. Body still complaining loudly. And my thinking muddled… it absolutely flips out with so much migraine, so much bleeder, so much bender. It goes there. It questions my sanity, my reality, my concept of migraine. My thinking is more than muddled… it’s tortured. I use that word because I imagine a prisoner being tortured by captors. Apparently there is a point some reach where they will say anything, do anything to make the torture stop. Other captives will “stay strong,” or “go into another place” mentally in order to cope with torture.

Migraine is torture. My body and brain is in prison, trapped. My captor is a relentless torturer and may actually be my own person. Reprieves are brief and never truly reprieves because I am not free, I’m still behind bars, anxiously dreading the restart of the active torture.

This migraine WILL end… eventually. They always do; and I always survive. Time and time again. And I’ll look back when my mind isn’t migraining so intensely… and I’ll be quite shocked to read these ramblings about bleeders. I’ll be shocked and I’ll be sad. It won’t sound like me. It will sound rambling and intense and sad, and it will scare me just a little. Because when I’m not in the bleeder I’m more coherent. I’ll wonder if there are 2 people inhabiting my body. Such a strange, strange thing.

Migraine in the ER: Treatment Guidelines From the American Headache Society | Migraine.com

If you can keep these medications in your home, or call your doc for prescriptions, the need for ER intervention might never be needed.

https://migraine.com/living-migraine/treatment-guidelines-for-the-er/

I went once and for the last time in 2008. I simply refuse to ever go to an emergency room for migraine treatment, as I’d rather just die at home. In truth, the only thing that ends a migraine is time. And I’d rather waste it at home for free than go to a hospital and have them fiddle with IVs and judge me as a drug seeker.

In 2008, I had had a 6 day migraine. Thrown everything at it. It wouldn’t budge. I was between neurologists because the last one told me there was “nothing she could do” and didn’t want to see me anymore. On day 6, I was vomiting every medication up. I did not yet have injectables, antiemetics and steroids at home.

Our friends watched our 4 small kids for 6+ hours when Marc brought me into the ER. That was a dose of humble pie… I never would ask anyone to watch our kids. Since this was 2008, both my in laws and my parents were minutes away. They would never be available to watch my kids. Grandparents. Imagine.

The ER department was very new and small and the staff were more than kind. I wore my sunglasses. They turned off the lights. They never made me feel like a drug seeker.

The nurse started an IV and fluid. She pushed an antiemetic. She, Marc and I were chatting… talking about her as she was a traveling nurse.

Then she pushed dilauded. I remember I was talking but then stoppped immediately. I felt the pain medication flow over me, bathe my pain-riddled brain. The pain of 6 days was calmed in moments. I couldn’t talk; I could only close my eyes and cry… tears, tears, and more tears leaked out of my closed eyes. The dam was released and wouldn’t stop.

The nurse became terrified I was having an allergic reaction to the med. “Are you ok?!” She demanded.

“It’s just the pain… the pain… after 6 days, it’s finally ending.” And my eyes poured more tears down my face.