By Lynn Julian Crisci
Editor’s note: June is Migraine Awareness Month, and we think it’s a great opportunity to increase awareness. That’s we’re collaborating with U.S. Pain Foundation, to raise public awareness in an effort to take a step towards creating better outcomes, increased access to migraine care and empower those diagnosed with migraine. We will be collecting reader submitted migraine stories between now and the end of June, and publishing them as “MYgraine Stories”, one-per-week until June, when we will publish as many as we can, along with our regular daily content. Click here for more information on submitting a story for consideration.
I was known as Cookie Cutter Girl, 21st Century Pop Superhero. I packed “Girl Power Pop” with a punch on 500+ radio stations and 30+ CDs Internationally. “Rolling Stone” called me “Nashville’s Version of Fiona Apple.”
I started the night of my accident very excited, as I was about to play a popular, 40-year-old Boston club—but I ended in an ER. In 25 years performing on stages, I’d never fallen, until I slipped on an untapped stage cord and knocked myself out. It left me disabled, in a wheelchair, due to an undiagnosed TBI in the base of my brain. I also suffer from Migraines, Fibromyalgia and Ehlers Danlos Syndrome (EDS). I slowly, painfully, learned how to do many things over again, including walking, over the next 5-6 years.
What I lost:
- My job and all present and future income from music performance and merchandise sales.
- My personal and social life, as having chronic conditions sorts your friends out for you.
- My patience with my fiancé, my dog and people because chronic pain makes you cranky.
In the fall of 2009, I moved to Boston to be closer to all the major hospitals. There I saw a kind, caring neurologist, who diagnosed me with a brain injury. Finally, it all made sense: I had a mild Traumatic Brain Injury (TBI). As if that wasn’t enough, I suffered weekly migraines too.
Yet, from the end of 2011 through March 2013, I found a new passion to pursue, acting. Since I’d been on stages since I was five, acting was a natural transition. So I began taking classes and acting in regional short films and commercials. Migraines made it MUCH more challenging, as they do almost everything. The bright lights and tiny print on the scripts made my migraines more frequent and more painful. The 12–16 hours days were exhausting and took me days to recover. Yet, it stimulated the part of my artist’s brain that needed to be creative. I was nominated as “Best Actress” for a New England Actors Best of Award (NEABO), slowly earned a substantial acting resume, garnered good press, and built a new website, BostonActress.org.
On 4.15.2013, I became an injured “survivor” of the Boston Marathon attack. I felt more like a “victim,” and needed to do something empowering. So, I trained every day, despite migraines and body pain, for five months to run the 2014 Boston Marathon. I completed that race, in the Mobility Impaired division, along with the Boston Athletic Association’s (BAA) Half Marathon, 10K and 5K races, collectively called their “Distance Medley.” I am so honored to be named one of the “Most Inspirational Women to Ever Run The Boston Marathon” by “SELF Magazine.” SELF MAGAZINE, http://www.self.com/fitness/fitness-news/2015/04/boston-marathon-runners-female-inspiration/ and Most Resilient by MORE MAGAZINE, http://www.more.com/health/i-didnt-know-i-had-it-me?page=2.
In 2016, my migraines reduced in severity and frequency after HBOT treatments. I also started using CBD oil to successfully prevent and interrupt my panic attacks, and reduce my stress level, inflammation and chronic pain.
Lessons I’ve Learned:
- YOU are your own best advocate. Only you know what symptoms are “new” and “normal” for you. The foundation of your medical team is your primary doctor, so be sure to have one who will fight with and for you for your medical rights. Keep fighting for treatment of new symptoms, and don’t stop until you are fully diagnosed!
- Your primary care physician is not a TBI specialist. See a neurologist for migraines.
- Try to take only one new medication at a time. This allows you to see how you react to it and what side effects you have from it.
- Your migraine brain needs more rest and less stress than a healthy one! It is critical that you limit access to fluorescent lights, computer and phone screen glare and low light reading.
I chose to do volunteer work because it gave my life purpose again. I chose advocacy because it gave me my voice back, not to sing, but to speak for those who cannot. The lesson is to find what speaks to you, and channel what energy you have towards it. Only you can decide what gives your life “purpose” and will make you feel good about yourself again.
My message is one of INSPIRATION and HOPE. I fought my way out of that wheelchair, and I fought my way across that finish line. If I can do it, so can you. Never give up HOPE!
Strength Through Unity…
Lynn Julian Crisci wears more hats than a Hydra has heads. In film, she’s an actress in dozens of movies. In music, she’s a Pop Superhero on 30+ CDs Internationally. In tech, she’s a website SEO guru and a press release and article marketing writer. In health, she’s an “Activist, Ambassador, Speaker, Consultant.” Her daily struggle with chronic pain inspired her to volunteer as the Director of Medical Marijuana Advocacy for Leaftopia (Leaftopia.com), which includes overseeing all their social media and fighting for patients’ rights. She is the Massachusetts Ambassador for the US Pain Foundation (USPainFoundation.org), and the Advisory Panel of the Massachusetts Resiliency Center (MAResiliencyCenter.org). Her message is one of Inspiration and Hope.
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