SO MANY migraineurs, so few spots available at Retreat Migraine. 💔
Frankly, I have HORRIBLE luck with lotteries. Dismal.
If you’ve seen my letter this year, you know I was really looking forward to attending this next year’s Retreat Migraine. Got the news today that I got scrubbed in the lottery. At first I was hopeful that maybe there was still a chance – since I’m waitlisted, but as the day’s moved on, I’m finding myself more and more in mourning.
I’m really excited for the migraineurs who are selected and have the opportunity to attend… because I know what an AMAZING experience awaits them: education on SO many levels and aspects, sample treatments, community, validation, opportunity to try new therapies and learn about stigma and advocacy, and most of all – fellowship, understanding, acceptance and love. 💜❤💜
It is mind blowing what a HUGE NEED there is for Retreat Migraine. But it’s more than a “need”
… it’s like a NECESSITY… like oxygen is for life. And it’s only THREE DAYS.
When I was first diagnosed with Chronic Migraine in 2007/8, I didn’t understand the magnitude. I knew only one person in the world who had frequent migraines. My doctors all tried to help (except my first neurologist who discharged me from her care, saying there was nothing more she could do for me), but they either withheld information or simply were unaware of 75% of the unusual and upsetting symptoms I’d face frequently and they didn’t communicate the concept that CHRONIC means it never goes away and your life and body are forever changed. They also made me feel freakish… like I was the only person in the world who had Chronic Migraine so frequently and didn’t respond to treatments.
I cannot explain the ALONENESS I felt those first several years. 2007-2014. So utterly ALONE…in a world surrounded by good friends and loving family. As I failed my children daily, they were nothing but nurturing and understanding about my health decline. My husband ALWAYS believed me and we bumbled and stumbled around our entrance of the CHRONIC LIFE … trying to learn together
… trying to understand what exactly was happening.
20 medications I have trialed.
8 holistic supplements.
6 medical areas of specialists.
13 eastern and western treatments.
Special diets, juices, powders, capsules, herbs, shakes, and more. The pricetag on all this would blow your mind right out of its skull. But there is such a desperation to find some wellness, that everyone selling something can snag you hook, line and sinker. They claim they can cure you. They wanna help cure you. Pure intentions. They don’t have a clue how they’re taking advantage of a desperate person. And they don’t truly understand this chronic genetic neurological disorder. And they certainly have not lived it 24/7, 365 x 12 years in my shoes.
And each failure, I blamed myself… something I must have done wrong, somehow I did it wrong.
The PAIN and symptoms were absolutely HORRIBLE, the pretending to be okay was beyond EXHAUSTING, but the Aloneness – that was what would kill me. I had everything in the world but was completely bereft and alone. Have you ever despaired so bad you thought you’d just cease breathing? Just be sad enough and a complete failure … and just not be able to take another breath.
I was poison and if I touched anyone, my poison might spread to them. I cared too much about others to poison them. Utterly alone.
Through a quirky well-intentioned accident, someone on social media understood my circumstance and placed me in a Facebook support group. And one Saturday morning my life was saved as I awoke to find post after post in my feed from other Chronic Migraineurs. It took me weeks to understand that what I was seeing was true: there were hundreds of others living the same life as me. Hundreds. I wasn’t actually a “freak” and I certainly wasn’t alone! Since then, I’ve made leaps and bounds in my comprehension and educations… I’ve found my advocacy voice and I know how to self care. I’ve relearned words… like “resting” and “recovering” is not synonymous with the bad word “lazy,” for example.
I would do all in my power and shout from across the world to save others from that Aloneness, to save others from feeling like freaks.
I’m so grateful – beyond words – that I was able to experience Retreat Migraine 2019.
And this is what I will miss this year. The being in a place with hundreds of people like me, understanding, connecting, learning, and cultivating community and above all, HOPE! HOPE for each one of us and our future.😍
They will stream the Retreat on Facebook and I’ll certainly take advantage of that. And I’ll try to turn my frown UPSIDE DOWN and make that be really okay! But there is a mourning for my loss. And I’ve got to work through that. I’m also a little glad that I didn’t get the tattoo since it was only a one time deal.☺️