I am participating in the Long Island Heart Walk to raise awareness and celebrate six years of being stroke-free. This year has been mentally challenging as a stroke survivor, with several stroke events hitting close to home. A family member passed away from a stroke, a coworker experienced one, and a close family friend had a second stroke, having never fully recovered from the first.
This year's walk is especially meaningful because our daughter, Hannah, will be joining us—strolling along for the journey.
On September 12, 2018, I went to the hospital after losing motion in my right arm, experiencing vision disturbances, and struggling to maintain balance while walking. After numerous tests, I was diagnosed with an Ischemic Stroke “shower.” Unlike a single clot, I had a shower of clots that looked like someone had sprinkled confetti on my brain, with clots scattered everywhere. Seeing my brain covered with clots was terrifying. During my 10-day stay at Stony Brook Hospital, I saw countless specialized doctors and underwent various tests to determine the cause of this stroke shower. The team of doctors concluded that it was caused by an autoimmune disease I was unaware of—Antiphospholipid Syndrome (APS).
#APS is an incurable, life-threatening autoimmune condition that causes the blood to clot too quickly. The condition can lead to potentially fatal events such as strokes, heart attacks, lung blood clots, and DVTs. In pregnancy, APS is the most common cause of recurrent miscarriage and stillbirth and is also associated with other complications, such as low birth weight and premature births. APS affects 1 in 2,000 people, and 75-90% of those affected are women.
Leaving the hospital, I was in shock over everything I had been through, but that was just the beginning. At that point, walking was more challenging than when I was first admitted. I needed therapy for my right arm, took many daily medications, had numerous doctor appointments, and underwent more blood tests. It took about 10 months for me to start feeling more like myself. The entire process of having a stroke and recovering was—and still is—mentally challenging.
Life after a stroke and living with APS comes with its own set of challenges. I now have to take daily medication for life, attend constant doctor appointments, and deal with fatigue, brain fog, dizzy spells, headaches, noise sensitivity, joint pain, and the mental toll of what happened. Some people who have had a stroke will have visible changes, but for others, like myself, the challenges are invisible. Most people who have had a stroke do not recover 100%. I am incredibly fortunate to be where I am today, and I remind myself of that every day.
This is a wonderful way to celebrate 6 years without a stroke and my fourth Heart Walk. I am honored to be part of this event.
I am walking to raise awareness for strokes and young stroke survivors because strokes can occur at any age. I am walking to celebrate life—MY LIFE—and all stroke SURVIVORS!
Thank you for helping raise stroke awareness!
