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Posts Tagged ‘patient advocates’

Migraine Meet up in Real Life

June 14th, 2011

Some of my dear bestest buddies from the forum over at My Migraine Connection were over at my house on Sunday, for reals! It was so wonderful having MaxJerz (and her Mom) and KatintheCorner in my own space. MJ was back visiting my state, where she grew up, after being gone for five years; she came up with the idea. Kat came down from her corner of the state and I picked her up from the train. We were sorry the timing was such that EG couldn’t join us from yet another direction. I also wish we’d thought to take a picture. My old standby heads-together statue will have to serve. I love this photo, though, it makes me think of Migraine sufferers helping each other – putting our heads together.

I always feel super responsible when I host something, and of course I was feeling responsible for our weather – it had been super hot, then thunderstormy, and I worried about everyone’s heads. Why do I think I’m responsible for the weather? The day itself was humid but not too hot, and overcast. All our heads held up well enough. Beforehand of course I cleaned myself half dead (and give credit where due – my Danny man did the same), but was worrying about all the things we hadn’t gotten to.

Everyone was so easy and natural it wasn’t too hard to give up my obsession to make things perfect and just enjoy being in their presence. It’s an amazing thing to meet people you know intimately, but have never been with before. It’s fun to just experience the way people move, their gestures, their voices, when your contact so far has been in words and pictures. And to give real hugs where you’ve sent lots of virtual ones before. People are great in three dimensions! It’s fun to be three dimensional too- to tell my funny stories and ham it up the way I like to. Can you all tell from this blog that I’m pretty goofy? (Yes, intelligent, well-informed, authoritative, but goofy.)

It was a quick visit, but a great one. I’ve gotten to meet lots of great Migraine buddies lately – been meaning to blog about the Migraine focus group I was in for the past month – I promise I’ll get to it soon. It’s a funny thing; it’s not that Migraine sufferers are all that unusual – we’re about 12% of the population. Even those who are or have been chronic Migraine sufferers aren’t that unusual, though we’re a minority of the Migraineur population. But those who are active on-line, are advocates, are seeking help and to help one another, we’re not your common or garden-variety. It’s an honor to be part of this community, and a pleasure to have you all in my own living room.

– Megan

Tags: Migraine activists, Migraine sufferers, migraineurs, on-line activisim, patient advocates
Posted in Advocacy, Weblogs | Comments (1)