Last month was National Vascular Disease Awareness Month and I shared this on my social channel. I have decided to include it here as well–and start to really share my story.
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Stick with me, I have a story…and nothing better to do on a rainy, pandemic Saturday. Typically I write about this then delete it, but not today. I’m going to do my part to spread awareness and be brave.
I used to think vascular disease was something that just happened to older folks who ate too much butter and fried foods–people who had high cholesterol and high blood pressure.
Until I had a stroke of my very own at age 32–during CrossFit. A stroke in my brainstem which I later learned, many don’t survive. A stroke due to a tear (dissection) in one of the two vertebral arteries in my neck that impeded bloodflow to my brain. Thanks to my husband acting FAST (google BE FAST), I’m here today. He’s a real smart guy and still lovingly tells me I owe him for saving my life.
At that time eight years ago, I spent a week in neuro ICU in the worst pain of my life, educating myself and terrified–my family by my side. I was later told by specialists, it was a fluke (from the heavy weights I was lifting at CrossFit) and that it “probably” wouldn’t happen again. It was rare. Like 1 in 100,000.
Not so. Fast forward six years to 2018. My artery tore again while vomitting during a three-day migraine. It was at the ER, after another CT angiogram, that I was diagnosed with fibromuscular dysplasia (FMD)–a rare blood vessel disorder that essentially has made the arteries that lead to my brain weak. I immediately found myself a specialist. I also found they are few and far between.
I used to feel overwhelmed by emotions nearly every time I spoke of these life events. Especially because not a day goes by that I don’t have some symptom reminding me that I’m living with this and that it could happen again. But I’ve slowly learned to live happily with a chronic disease and the aftermath of a stroke that you’d never know I had if I hadn’t told you. Sometimes I share bits of my story with those who want to know why I can’t or won’t do certain things…other times it’s just so people know my limitations upfront, like why I can’t lift more than 15 lbs, why I get uber dizzy in crowds, brutal migraines, wear sunglasses on cloudy days, why bright lights are my nemesis. Why I’m fragile and always will be. How I don’t know if I’ve passed this on to my precious 4-year-old, and will forever be overprotective of that little neck. Why I am afraid of contracting COVID and doing everything in my power not to get it (including homeschooling!) because of the many complications it could cause someone like me.
I continue to meet physicians who have never heard of FMD. Thus, I feel the urge to continue to share, educate and advocate in the hope of reaching even just one person who will walk away knowing a little bit more about a vascular disease they never knew existed, that primarily seems to impact young, healthy women.
If you’re curious to know more about this disease that often doesn’t rear its ugly head until “middle age,” here’s a 3-minute read quoting a physician who I am so grateful to have backing us and making it her life’s work to find a cause and a cure.
My Brain, Interrupted 
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