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The Ups and Downs of My Life With Chronic Illness and Disability

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You are the dreamer of your own dream. Create visions of the world you want to see.

I was blessed with the opportunity to meet Gabrielle Bernstein in June — a spiritual mentor who has helped me through some of life’s darkest times.

Hearing her love and support in person filled my heart with love. She looked me in the eye and shared that my story helped her and her husband through a very difficult time.

In awe of this experience, I reflected on the path that led me here. Something I once thought was a distant dream became my reality.

Although I was tired from the excitement and flying home from California a few days before, I continued with my day. In the car on the way home I was looking at my phone trying to ask Jamie to charge it, but the words wouldn’t come out. After a few tries, I was able to say it and assure her that I was fine, just “tired.”

Before I knew it, everything was lights, like I was looking directly into the sun. I closed my eyes and blinked until I could see again. I took medication, drank water and assured everyone that what I was feeling was minor.

Moments later, I was throwing up in agony. Something was wrong.

My mom, a registered nurse, knew it was time to call 911. In 20 minutes, I was surrounded by people wanting to help. The thing was, I felt that nothing was physically wrong with me; there was nothing the EMTs could do.

Feeling anxious as f***, I wanted to back out, call it off and tell everyone to go home.

The people who rushed to the call wanted me to go to the nearest hospital, Glen Cove. My mom and I were not going to let that happen because Winthrop was the best hospital for my health needs. My mom works there and the doctors already know I have muscular dystrophy.

I knew I needed help. After an ambulance ride that felt like a lifetime, I made it to the doctors at Winthrop.

Luckily, my doctor understood this was a severe migraine and didn’t put me through multiple tests I didn’t have the energy to endure. My doctor told me he has the perfect “cocktail” of medicine to relieve my symptoms, which worked like a charm. The medicine put me to sleep and I woke up at 5 in the morning to being discharged, feeling myself again.

They diagnosed me with a cluster migraine. Since I flew recently, my blood was thicker, resulting in clusters that could have developed into a clot if untreated. Thank God I was treated and they addressed the problem early.

This was a wake up call for me to stop rushing, respect my body and appreciate the moment.

My life has its ups and downs like everyone else. My video is a great way to explain my disease and how amazing my support system is, but not my personality nor the challenges I face on a day-to-day basis.

After the hospital, I was on bed rest to give my body the chance to heal. I want everyone to picture themselves in my shoes. One moment I’m meeting my idol and the next I’m being wheeled into an ambulance on my way to the hospital. I was living my dream, then suddenly found myself in my worst nightmare, not knowing what was happening to me.

These experiences are constant life lessons, like a wheel that never stops turning. I try to process everything that comes my way in a positive light. I take every day as a gift. Enjoy every minute of the good and accept the bad for what it is.

Originally published: October 1, 2019
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