Maysack celebrating Shades for Migraine

City & State: Madison, WI

Age: 28 years old

Pain warrior role: Advocate and ambassador since 2017

What type of health conditions do you live with: Daily cluster headaches, post-infection chronic mega-migraine disorder, and fibromyalgia

What is your favorite tip for others with chronic pain: “It has become my mission to spread the good word that we are not alone, regardless of how isolated we may feel at times. We’re so much more than any diagnosis or condition, and it’s imperative to navigate ways in which we co-exist with our suffering, all while refusing to surrender to it. I believe compassionate relationship with oneself is not only crucial, but that we’re also worthy and deserving of that as well as the same affection, love and respect that we would give away to anyone else.”

Read More

By Mia Maysack

A loved one recently used the word “suffering” while expressing their thoughts on my situation.  Yes, it does feel like agony at times, but I no longer embrace that word as a part of my personal terminology, therefore, I affirm that by making it known to others.

How can anyone know what our wants/needs are unless we convey them?

Furthermore, how do we go about conveying something we ourselves might not even know??

Read More

Stayin’ alive

By Mia Maysack

There’s no limit to the unconditional amount of reasons a person could be in pain: genetics, an accident, injury, or surgery gone array.

Swimming/diving were my passions.

It has been said, fear wasn’t an emotion I demonstrated often – at the age of 3, I would attempt jumping into the deep end on my own accord.

At 10 years old, you could find me spending my waking moments at the neighborhood pool from open – to close. Until bacterial meningitis robbed me of childhood, little could anyone have known that I’d live with head pain forevermore.

Read More
Attendees Sharon Rose, Heidi Brehm, and Ryan Drozd at the summit. View a slideshow of the weekend here.

Despite challenges often faced when traveling with a chronic pain condition, 19 advocates and a handful of caregivers rallied together in Dallas, TX, for a U.S. Pain Foundation Advocacy Summit. The goal was to help people with pain understand how they can take action at the state and federal level and influence positive change for the pain community. Participants were selected to attend because of their exceptional efforts to engage and speak out about pain in the past.

Read More

Voices from the Hill

By Jorie Logan-Morris and Jeannette Rotondi

Every year in February, advocates for migraine and headache disease come together in Washington, D.C., for an event known as Headache on the Hill (HOH). HOH is organized by the Alliance for Headache Disorders Advocacy (AHDA) and has been running now for 12 years.

During HOH, advocates of all kinds — migraine and headache patients, caregivers, doctors and specialists, and more — work together to lobby and meet with Congress, presenting important legislation and “asks” related to migraine and headache disease in hopes that lawmakers will support our requests. This in turn helps bring more national awareness to migraine and headache disease and ultimately further supports the millions who suffer all across the country.

Read More