Headache on the Hill, 2018

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“Nothing convinces like conviction” Lyndon Johnson

Headache on the Hill 2018, February 12-13

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I am so encouraged by the outpouring of support that I wanted to take some time to share, in more detail, my experiences at Headache on the Hill. This year, I was invited to attend the 11th annual Headache on the Hill as a patient advocate after the popularity of the article I wrote last election season which covered the opioid crisis. I traveled to Washington D.C. accompanied by 140 patient advocates, caregivers, researchers, leading physicians, for a common conviction: better pain management. Although each of us shares this conviction, we come from 40 different states, hold different political beliefs, and walk different paths of life. We share one common bond, our lives have been drastically affected by chronic pain and the conviction we have for better pain management.
I have to explain what a distinct honor it is to be included with this powerful group. Each one of us is living with the daily impact of chronic pain, and each one of us is more resilient, fierce, and relentless than the disease we fight daily. I am still feeling inspired by the beautiful minds and determination of this group of migraine warriors!
We are all privileged to live in a country where we are able to meet with our elected officials and voice our concerns. There is so much power in YOUR voice and YOUR story. It does stand out to our representatives when people take the time to organize and travel to their offices to spread their convictions. I am thankful for the conviction each participant of headache on the hill demonstrates every day!

 

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My take away from Headache on the Hill:

Migraine is not invisible and chronic pain is not either. Speak your pain, share your journey and shed light on what life with chronic pain means. Migraine does damage to the brain each time you experience an attack. Nobody wants to tell others that they essentially sustain brain damage, regularly. Especially, when most people with migraine are ages 18-30 and are trying to work and prove, to themselves and others, that they are more than their disease.

Why you should care:

  • Everybody is affected by chronic pain.

  • Do you or have you cared for someone who needed pain intervention?

  • Do you pay taxes?

  • Are you related, working or studying with someone who suffers from chronic “pain most days”?

  • Do you support our veterans?

What did I talk about with the representatives?

I shared my migraine journey. I explained how migraine became chronic, daily and intractable when I was in college at the University of Missouri. That throughout my undergrad, most students and professors thought I was hungover when I was running to the bathroom, shaking in class, sweating profusely, wearing sunglasses and a hat; but that I actually had a severe migraine. I explained how my graduation was delayed as a result of my disease and the lack of options available to manage chronic pain. I shared that side effects often left me unable to remember words or feel my limbs and that overall, my life has to be approached differently because there aren’t reasonable avenues for treatment available.

The representatives I met with: Congressman Kevin Yoder and Legislative Assistant, Anjali Chhatre, Legislative Assistant, Bryan Wells for Senator Pat Roberts, Legislative Assistant, Kyle Christian for Senator Jerry Moran, and Congressman Roger Marshall, M.D. each asked me a lot of questions and were interested in what I had to say and how they could help.
They asked me what I do when I have a migraine, so I took out a sumatriptan injection from my purse (aka, personal pharmacy) and explained that I am able to take this up to three times a week for migraines. Further explaining that when you have chronic pain, deciding which three days of the week you can function becomes a reality. I asked each one of them if that was something they would be able to do, given their schedules and work commitments? I also explained that triptans are the only drug ever created specifically for migraine and that they were first introduced to the market over 20 years ago. In addition to that, just like opioids, triptan can actually in turn cause migraines along with an array of other side effects - many of which I personally suffer as a result of the pain intervention therapies I needed throughout college.

 

What you can do now to help?

The Opioids and STOP Pain Initiative Act of 2017, is a bipartisan bill. Chronic pain and the opioid crisis affects everyone regardless of party lines - not Blue, not Red, just Purple. In two weeks, American Neurological Association will be hosting, Neurology on the Hill in Washington D.C.. Among a few other asks, they too will be presenting the same ask about the Opioids and STOP Pain Initiative Act.
You can send a pre-formatted email to your members of congress HERE --->  http://cqrcengage.com/ahda/?0

My heart is so full!

I am still feeling starstruck to have been in the same room as authors who books I clung to for answers and understanding during the early years of my diagnosis, physicians who’s research and work I have admired for years and went on to write about, as well as, shaking the hand of the directors of Out of My Head , a documentary we were invited to premiere! I have patiently anticipated the release of this documentary, so this was particularly thrilling!

I was also reunited with so many of my migraine sisters who I first meet in person last year at the Amgen Migraine Blogger Summit. After years of following, liking, reading, subscribing, etc. these inspirational talents became friends and colleagues. 

I am thankful to have meet even more truly amazing people who exchanged their journeys with me. There really is nothing like being among a group of people who also sleep with ice strapped to their faces. Each of you are inspirational and I’m so glad we had the chance to connect! 

Thank you so much to everyone for the support, feedback and outreach! This has been an incredible experience and I am already preparing for next year’s Headache on the Hill, I hope to see all my new friends there again!

I also NEED to shout out my ROCKstar boyfriend, I am thankful that he traveled with me to make this feasible for me to attend, traveling is very challenging for me and it helps immensely to have him there for physical and moral support. I'm so glad that my migraines were what gave us the opportunity to take our first vacation, without Bear. My migraines usually prevent our trips so this trip was really special. Paul always said life will be that much sweeter when I don’t have (a) migraine. Well Paul, you were for sure right, (of course) but life is just pretty sweet in general with you in it. I’m still head over heels for you, thank you for making D.C. a perfect weekend.

HOH IN THE NEWS: 

Read what POLITICO writes about HOH! 

 

progress since hoh

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm596897.htm

Since Headache on The Hill, we have gained the support with more co-sponsorships of the bipartisan #Opioids and STOP Pain Initiative Act (H.R.4733/S.2260)

Thank you to :

Senator Chris Coons (DE) | John Larson (CT) | Earl Blumenauer (OR) |  Congresswoman Anna Eshoo(CA) | Rep. Jamie Raskin (MD) | Eliot Engel (NY) | Rep. Ruben Gallego (AZ) | Ro Khanna (CA) | Congressman David Cicilline(RI) | Congressman Peter King (NY) | Rep Conor Lamb (PA)|  Congressman Ken Buck (CO) |  Congressman Jodey Arrington (TX) |  Congressman Andy Biggs (AZ) |  Congressman Jim McGovern (MA) | Senator Sheldon Whitehouse (RI) |  Senator Angus S. King, Jr. | Rep Suzanne Bonamici (OR) | Senator Jon Tester (MT) | Congressman John Culberson (TX) | Congressman Seth Moulton (MA) | Congresswoman Julia Brownley (CA) |  (H.R.4733/S.2260), Bill Nelson (FL) | Congressman Alex Mooney (WV) | Donald M. Payne Jr. (NJ) | Representative Zoe Lofgren (CA) |  Annie Kuster(NH) |  Rep. John J. Duncan, Jr. (TN) |  Debbie Dingell (MI) | Senator Chris Coons (DE) | 

 

Oh Ya.... and CGRP was APPROVED BY THE FDA!!!!! 

Sources:
1. Rehberger, Olivia. “Who You Vote For Can Influence Your Migraine Health.” Migraine Again, 29 Jan. 2017, migraineagain.com/vote-can-influence-migraine-health/.
2. Katz, Josh. “Drug Deaths in America Are Rising Faster Than Ever.” The New York Times, 13 Sept. 2017, nyti.ms/2rI5lBB.
3. NIH. Estimates of Funding for Various Research, Condition, and Disease Categories. October 24, 2017. https://report.nih.gov/categorical_spending.aspx
4. Finkel, Alan, and James R. Couch. “Headache: Veterans' Battle after Service.” The Alliance for Patient Access, 10 Nov. 2017, allianceforpatientaccess.org/headache-veterans-battle-afte…/.
5. “2018 Neurology on the Hill.” Neurology on the Hill, www.aan.com/con…/regional-conferences/neurology-on-the-hill/.
6. Home Page, cqrcengage.com/ahda/?0.



National Institutes of Health (NIH)
Alliance for Headache Disorders Advocacy

 

Outfit Details : 

I finally came to terms with the fact that all I own is yoga pants and dresses, so I headed to J.Crew on the Plaza to get some updated professional attire for the conference portion of the trip. I got a pair of high-wasted professional skinny pant. They were out of blazers in my size, and since I waited until the day before I left to shop, I got a black knit sweater that looked similar to a blazer and was actually perfect because it was quite chilly the day we were on the Hill and I didn’t want to lug around a coat in addition to all the paperwork I had with me. I got a simple white button up to put under the knit. I paired it with my faithful Tory Burch Flats and accessorized with gold jewelry. Looking the part made me feel more confident and prepared to put my best foot forward on a big day for the migraine community!

Pant | Knit Blazer | Button Up Top | Tory Burch Flats |