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Headache on the Hill 2016, Part 1

February 7, 2016

Bless me father for I have sinned.  It’s been AGES since my last post!  Lots of good, bad & ugly since then.  Let’s quickly catch up (with pictures!):

Good:

  • Botox, LDA shots, vitamin & fluid IVs & lack of Effexor (more on that later) helping my migraines overall
  • Tissue transglutaminase IgA (blood test for celiac) down to .45 in Nov ’15 from 4.64 in Aug ’14 – I guess not eating gluten really works for celiac – although I’d like to see it even closer to zero
  • Helped my ex “divorce” his business partners and start his own firm: Blanco Architecture, where I can work part-time on my own schedule and not get continuously hassled & discriminated against
  • Started another blog & website: Gluten-Free Beer Babe with lots of help from Ariane @ Do You Own Thing
  • Met one of my favorite producers, Ron D Moore (Star Trek: TNG, Battlestar Galactica, Outlander), who talked to me & nine other fans about his work and life at Pac Bell Park after a Giants game – for two hours – and bought us drinks – nice guy! 
  • Started hiking with my friend Sandra, her dog Spencer and my dog Bella, when I feel well enough  
  • Went to Vancouver with one of my brothers to see the Women’s World Cup final and witnessed, in person, the Carly hat trick in first 16 minutes of play  

Bad:

  • Dissolution of my eleven year relationship
  • One of my dogs, Hoss, passed away  
  • Denied disability again – on a technicality this time
  • Took months and months to get off Effexor, which was giving me MORE migraines and depression instead of less (this is an extremely difficult drug to get off of – it literally  changes your brain chemistry – including getting “brain zaps”)

Not going to discuss the Ugly.  But enough of all that.  Here I am in DC again for my second round of Headache on the Hill!  Traveling here is challenging and expensive, but I never hesitate to come to one of the best cities eva.  And I LOVE being a part of the legislative process (sort of) for one day.  

HOH is an event organized by The Alliance for Headache Advocacy, which is a coalition of many advocacy groups.  Doctors, patients, caregivers & advocates come together to meet with our Representatives’ and Senators’ offices.  Sometimes we get to meet with our legislators, but mostly we meet with legislative assistants, many of whom focus on health care issues.  If we make a good case, these assistants bring our “asks” to our legislators for action.  Last year’s asks included increasing NIH funding for migraine research & getting support for legislation that would increase funding & awareness for veterans with migraines, an increasing problem unfortunately.  Last year’s group:

 
It looks like there will be one group of us from California this year (last year we broke into two groups) visiting the following offices: Feinstein, Boxer, Pelosi, Eshoo, Huffman, Brownley & Lieu.  Not only are these some serious hard-hitters, but we have seven meetings in one day!  Wow.  We have serious hard-hitters on our team too – top neurologists from all over –  including Dr. Cowan, head of Stanford’s headache clinic & Dr. Rapoport, a neurologist from Santa Monica, who works with UCLA.  And that’s just the California team!  Wish us luck this Tuesday Feb 9th!

More to come about my trip and the day of lobbying….

http://AllianceForHeadacheAdvocacy.org

AHDA Member Organizations:

  • Alliance for Patient Access (AfPA)
  • American Academy of Neurology (AAN)
  • American Headache and Migraine Association (AHMA)
  • American Headache Society (AHS)
  • Clusterbusters
  • Headache Cooperative of New England (HCNE)
  • Headache Cooperative of the Pacific (HCOP)
  • Migraine Research Foundation (MRF)
  • Miles for Migraine Races (MFM)
  • National Headache Foundation (NHS)
  • National Migraine Association / MAGNUM
  • Ohio Headache Association (OHA)
  • PFO Research Foundation (PFORF)

#Headache2016 #HOH2016 #Migraine

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