Migraineurs who are selected and have the opportunity to attend… an amazing experience awaits: 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 can not 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 circumstances 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.

Advocacy is everything.

#RetreatMigraine, #ChronicMigraine, #ChronicMigraineAwareness, #CHAMP, #ChronicIllness, #InvisibleIllness #PatientsNotAddicts, #SpeakYourMigraine