Last year came with many highs and lots of lows for me. So many unexpected things happened, but overall, it was an incredible year.
Migraine, in and of itself, can take you on a surprising, jolting, and disruptive journey. You never know what to expect from one day to the next. Navigating life while managing ongoing pain is hard, but I’ve also had some pretty awesome moments. The start of this new year brought with it an intractable migraine, and months later the pain still hasn’t subsided.
In times like these I try to reflect on the positive experiences I’ve had due to migraine — and try to look ahead to better days.
Headache on the Hill
My year started out with my first Headache on the Hill event. Since 2007, the Alliance for Headache Disorders Advocacy puts on this annual two-day lobbying event that brings together health professionals, migraine and cluster headache patients, and caregivers. We focus on a request or ask to bring more awareness to the impact of headache disorders. The hope is that this will increase the availability of research funding.
I was super excited and nervous to advocate on Capitol Hill, but it was a great experience. This year’s event was the largest one yet, with 145 participants from 39 states visiting 212 congressional offices.
On the day of the event, I woke up with a severe migraine attack and had no idea how I was going to make it through the day. My group had eight meetings scheduled – the first one was at 8 a.m., and the last one was at 4 p.m. But being part of an event with such a great purpose kept me going.
We had to walk back and forth between the House and Senate sides multiple times, sometimes with only a few minutes to get to our next meeting. It was exhausting, but it felt good to share our experiences with the congressional staffers we met. They really listened to our stories and seemed genuinely interested in our request.
Seeing so many advocates, many of whom were struggling themselves, was incredibly inspiring. Telling my story and being a part of something that was bigger than me or my pain was a huge source of strength that helped me get through the day. I felt energized despite the pain, and I often think back to those two days in our nation’s capital when I need some extra motivation.
New opportunities for advocacy
When I first started my blog, I really just needed an outlet to share what I was going through. I had no idea that it had the potential to become something more. Years later, one of the most wonderful things to come out of blogging about my life with migraine is the exposure to other like-minded people and organizations.
Through that exposure and visibility, more opportunities have come my way, which has led to new roles and opportunities to advocate for myself and others living with migraine.
Last March, I started a part-time position with Global Healthy Living Foundation as their new migraine patient advocacy coordinator. In this role, I seek out people living with migraine across the country to help them share their stories and get more involved in advocating on the local, state, and federal levels. It’s a fulfilling job, and I love connecting with other people around the country with migraine, headache, and cluster headache.
In April, I attended the second annual Migraine Blogger Summit in New York City. It was a great opportunity to share ideas among great blog and advocate leaders in the migraine space. A few months later, I was honored to receive the 2018 Advocacy Award from the Association of Migraine Disorders at their awards dinner in Rhode Island.
I feel so humbled and sometimes overwhelmed by it all. I never expected any of this could come out of my blogging. My only desire was to talk candidly about migraine and mental health. I recognize how fortunate I am that my pain has allowed me to prosper in a way I never could have imagined.
Milestones like these help me realize that my pain has a purpose, and just knowing that gives me strength to keep fighting.
An overwhelming time
After the awards dinner, I flew back home in time for my oldest son’s high school graduation, made it to Virginia for Migraine and Headache Awareness Month, and then I was back on the road again to San Francisco for the third Coalition for Headache and Migraine Patients stakeholder meeting. On top of these events, I was also keeping up with several freelance writing projects on the topics of migraine, depression, and anxiety.
Needless to say, June was an extremely busy month!
During my time in San Francisco, everything came crashing down, and I had one of my first-ever panic attacks. I had to leave in the middle of a training session and call my mother. I broke down over the phone to her.
I was so overwhelmed with everything that I was doing. Throw in life, kids, marriage, pets, and chronic migraine, and I felt pushed over the edge.
Thankfully, my migraine sister Katie was there to help me through it. Having friends who “get it” makes going through it a bit less frightening. I learned that I had to begin saying no to some things. Although I advocate for self-care, I wasn’t doing a good job of it myself.
Knowing that I have a supportive community of warriors behind me is an amazing and motivating feeling. These people understand what I’m going through completely, and they offer compassion, empathy, and recognition. They help me get through the toughest times by sending encouraging text messages and phone calls. Whenever we are at events together, there are a lot of hugs, laughs, and sometimes tears.
I have an amazing migraine family who is there for me no matter what, and that’s a wonderful feeling.
Hopes for the year ahead
I spent the rest of last summer taking it as easy as possible. Between the months of June and September, I experienced more frequent and severe migraine attacks. In August, I began a new treatment. I was cautiously optimistic, but unfortunately, my migraine became worse.
Today I’m in the throes of intractable migraine, and despite my best efforts I have not been able to find relief. I’m in pain daily, but I still feel optimistic about possibilities I can pursue this year.
In the meantime, I will continue advocating for myself and others and hoping to find better, sustained pain relief in 2019. Things often get rough and don’t go as planned, but I have hope for myself and everyone else with migraine.
As Martin Luther King Jr. said, “We must accept finite disappointment, but never lose infinite hope.” Try your best to remain positive despite the hardship of having chronic pain. I know I definitely will!
For more information on how to manage migraine, reach out to your doctor or healthcare team.
MIG-US-NP-00120 MARCH 2019