Updated: Jul 8, 2020
| This is the 179th story of Our Life Logs |
I’ve always been full of positivity and a little bit of sass. I guess I just love making people laugh. As a kid, I was known for being kind of spunky and was even chosen as a child model to promote a magazine called “Spark.” I haven’t changed much over the years. I’m still known for my obsession with pop culture and my nerdy shenanigans. Why not give someone a reason for a great big belly laugh? Although, sometimes it could be hard to find the humor in dark times and I had to fight for it. But I know laughing is my only chance at brightening my day, let alone getting some abdominal definition!
I was born on January 9, 1982 and grew up as an only child in Hyde Park, a suburb of Cincinnati, Ohio. Life was not perfect, but it was still good. We were a small close-knit family with a strong bond. We always faced adversity with our heads held high. Both my parents struggled with chronic illnesses—mom suffered from colon cancer and dad, renal failure, but they were very transparent and honest with me about their health challenges. From a young age, I learned how to deal with illness in a positive way.
Taking care of my parents made me see how rewarding it could be to help others. After graduating high school, I decided to choose a career that would allow me to do this. I went to college and got a bachelor’s degree in sociology, and afterwards, earned certificates in Deaf Advocacy and Human Services.
While I was in college, I also met the love of my life, Sean. He was rooming with a friend of mine and we quickly developed a friendship. It wasn’t long before our friendship bloomed into a romance and the rest is history. We got married in 2004, and I know it might sound corny but Sean makes every night feel like a slumber party and every morning feel like Christmas morning. Yep, he is that groovy.
So, I was poised for a successful career, was married to my best friend, and had dreams of starting a family. Life was going great.
Then it all came to a crashing halt one morning, eight years ago, when I woke up to what I initially thought was a severe case of the flu. I was in enormous pain and had difficulty speaking. After weeks of motor functioning problems, difficulty eating, and muscle weakness, I knew it had to be something far more sinister than the flu. I lost twenty pounds and had ten ER visits in two months, but no one could figure out what was wrong with me.
This was an extremely challenging time for me. I felt incredibly ill, anxious and confused. Being shuttled from doctor to doctor and specialist to specialist with only a lot of “head scratching” was terribly frustrating. On October 6, 2010, after a three-day hospital stay due to severe symptoms, I experienced something that rocked my world—and not in a good way. The staff physician that had been treating me for the past three days came into my room and exclaimed, “Why are you still here?” I replied that I was wondering the same thing and was hoping for some answers to my mysterious condition. He stated that hospitals were for sick people, not “sick” people, pointing to his head. He diagnosed me as psychotic and suggested that I was merely making up these symptoms for sympathy. This was my life’s absolute lowest moment.
But it also served as a crossroads moment for me. I remember lying there in my hospital bed and asking myself, “Are you going to buckle under this or are you going to keep moving, rise up and continue to investigate?” I had always been one to make Johnnie Walker’s out of life’s lemons, and I sure needed a drink right about then, so I tapped into my sass and positive energy and decided that I had too big of a journey left to give up.
Six months later, I found someone who gave me real answers to work with. After a thorough examination, Dr. George Lesinski, a neuro-trained ENT, pronounced me “the sickest patient” he’d ever had. With that one statement, he changed the script of my life. I knew my story was about to change.
Between Dr. Lesinski and a neurologist from the University of Louisville, Dr. Walter Olson, I finally got a diagnosis for my condition: Dysautonomia. Try saying that five times faster! Dr. Olsen explained that my central nervous system was a highway and all my other systems were like cars on the highway. He said I had the equivalent of a ten-car pile-up, and it was one of the worst cases he had ever seen in his 30-plus years of medical practice.
I also found out later that I had Ehrlers-Danlos syndrome which is a group of connective tissue disorders that affect the skin, joints and blood vessels. Basically, with these two disorders, I often feel weak, dizzy and have difficulty walking without the use of a walker. My blood pressure drops low, my heart beats fast and my poor circulation causes my fingers to occasionally turn blue. All in all, it’s a real treat.
Despite not being able to pronounce the names of these conditions without sounding like I had a mouth stuffed with marbles, I was glad to at least have an explanation for what I had been going through. I’m pretty sure I’ll never know what it feels like to win the lottery, but I’m certain nothing could beat how good it felt to finally get a diagnosis. I could stop trying to convince people that I was really sick and start looking into treatments for my condition.
I decided to deal with my illnesses the best I could. Having a chronic illness, like Dysautonomia, can be extremely isolating. I can’t participate in life the way I used to because I never know how I will be feeling on any given day. I often cancel plans at the last minute if my vertigo acts up or I’m just too tired. I’ve lost some friends during this whole process because they didn’t believe me or weren’t patient with my new limitations. Through all this, I’ve discovered who my true friends are and I’ve had tremendous support from them and my family, but especially from my main squeeze, Sean, who supported me through it all. He is supportive and understanding but most importantly, he gets my corny jokes and we manage to laugh our way through every difficult day.
My illness derailed my plans of becoming an advocate for the Deaf. I am limited in terms of my mobility and independence. Some days I am too dizzy to drive safely, other days I’m just too tired to function. But I’m not one to sit around and mope. One of my favorite things to do is make people laugh and bring a bit of sunshine to their day. I couldn’t do this if I wasn’t around people, so I picked myself up, dusted myself off and decided to get a fun job.
My life’s philosophy is “no matter what gets thrown at you, it’s up to you to make it into something beautiful.” I kind of took this philosophy literally and found a part-time job in the beauty industry. For the past six years, I’ve being working as a sales and educational coordinator for a cosmetic company, Josie Maran, at a Sephora store. While I’ve had to streamline my work hours to accommodate my chronic illness, I’m just so grate