Speech has power. Words do not fade. What starts out as a sound, ends in a deed.”  ~  Abraham Joshua Herschel

How approprate for Headache On The Hill, our words have power they do not fade. They may start as a small sound, but end in a deed. This in a nutshell is what we do at Headache On The Hill. We use our voices to explain what living with migraine is like, then we are able to put forth the ask or “deed” we wish of our legislator’s.

Yes, we could just put all the information and details for our asks, we had two this year, have it delivered to every legislator in all 50 states. That would miss one very important thing, our voices. How can we ask them to care about allotting more funding  from the HEAL Initiative to Headache disorders, when they may not know anything about migraine. Or the statics of migraine disease and headache disorders, migraine is the second leading cause of all global disability. Migraine disease and headache disorder currently receive 0.6% of the $500 million dollars Congress appropriated for the HEAL Initiative, which is for opioid and pain research.

They heard my personal stories, the battles I fought, some I have won some not. The debilitating pain, days to weeks spent in a quiet dark room, missing family events, losing my job of 27 years, losing friends, longing for my old life before chronic migraine became a part of it. Multiple doctor visits, inpatient hospital stays, the many different medication I’ve tried, implanted devices to help with pain, but failed. The feeling of guilt when I lost my job and could no longer contribute to the family budget. And how realized I was when I was approved for SSDI.  This you cannot get in a letter, you must tell it face to face. When our asks are brought forward they will remember each of our faces and our stories.

They will also remember us when our second ask is brought forward, to reform Social Security Administration Evaluation of Americans disabled by Migraine and Headache disorder. Currently the Blue Book contains no listing for any Headache disorder. Remember Migraine is the second leading cause of all global disability. As it stands those with migraine and headache are told to compare their impairments to the listing for epilepsy! Say What! We are asking for a reform of the SSA Blue Book for fair adjudication of headache disorder claims. This is a very important ask, so many living with migraine and headache disorders, are unable to work and filing for SSDI can be a nightmare. With headache disorders added to the Blue Book, the process should be somewhat easier.

This was my first Headache on The Hill, I still didn’t have my strength back after being in the hospital eight days. Then I picked upped a stomach bug on the flight over, I was in pain the entire time. But I’m already looking forward to next year, this was such empowering experience. Feeling like I made a difference for the whole migraine community, not just myself. To be in a room filled with over 170 people just like me and they were there because they cared. Seeing so many of my migraine sisters and getting real vs virtual hugs. The whole process was amazing and I couldn’t have gotten through the day without Darby O’Donnell. She was my sidekick as I was the only person from Missouri, Darby used to work for Senator Kit Bond, who ironically is from my home town.

Live with hope,
Roni

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