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April 5, 2017

Advocate on the Loose!

I’m on a plane home to LA reflecting on the last three weeks I spent on the east coast. Several opportunities came my way and of course it all happened at the same time! I am grateful I was asked to be part of events focused on community building, advocacy, education and collaboration.

I attended five events and visited five states. I think I probably stayed in at least 10 different beds and lived out of my suitcase. I might have only washed my hair on average every four days (thank god for dry shampoo!). I flew on four different flights and drove over 500 miles. Somehow I managed to build in quality time with my family, grieved together with friends, got snowed in, and walked the Tidal Basin at peak bloom for the cherry blossoms – my absolute favorite thing about DC.

These past three weeks are a blur, but luckily I wrote it all down to share with you! I’ll be writing in more detail about each of these events. I thought I would give highlights of each event whether they be quotes, ideas or general shenanigans.

Health Union Connexion Conference in Philly (parent company of Migraine.com and 21 other disease specific communities).

  • I learned the hard way to pay attention to detail, especially when it comes to the name of the hotel where you are staying, lest you look like a fool when trying to check into the wrong place.
  • “Health is about people. Not technology, not cost. It’s about supporting each other.”
  • You can’t hug every cat. https://www.youtube.com/watch?v=sP4NMoJcFd4
  • Adopt a “no asshole” policy in your work and in your life!
  • Quiet room buddies are the best.

Miles for Migraine Patient Education Day in Philly

I’m explaining Alice in Wonderland Syndrome

  • “When you’re so hard on yourself, there’s little room for sympathy to others.” 
  • Many of us have multiple medical issues, requiring more than one specialist. These doctors need to talk to each other- what a novel idea!
  • The ability to work best predicts the stigma felt by a patient.
  • Again, quiet rooms are essential during patient centered events!

Patient Centered Clinical Research Conference in DC

  • I got shamed by an exec when I said I needed a nap. He promptly got schooled on my condition and why sleep is essential in keeping my pain levels manageable!
  • “Patient Centricity” is the latest buzzword, but it can’t be a hollow pledge!
  • Therefore, patients need to be involved in the design of trials.

Advisory Board meeting with a pharma company to lend voice to the patient perspective.

  • The average med student only gets four hours of training in headache medicine.
  • Portray migraine life accurately.
  • Don’t lean in to stereotypes.

US Pain Foundation planning session and Take Control of Your Pain Event in White Plains, NY.

  • Create a Pain Action Plan.
  • Do not call patients “sufferers.” I can call myself a sufferer, but don’t label someone else as one. I agree!
  • Don’t get a therapy dog in trouble by letting him lick your face. Whoops!

My emotions have been all over the place, from ecstatic to profound sadness, from feeling so loved to missing my man, from pure joy to utter exhaustion. It was all worth it. I’m coming home feeling rejuvenated with a hundred different ideas, stories and action items running through my mind.

Overwhelmingly, I feel a sense of community that reinforces the fact that we are not alone.

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