I realized recently that I’ve been sick for more of my life than I’ve been healthy. Eighteen years ago I was starting my Freshman year of high school – I loved to play soccer and softball and do normal teenage girl stuff. Then one day things started to change. I had no idea that someday I’d be 33 and the words Myasthenia Gravis would be as familiar to me as my own name.
The first time I noticed my buddy Myasthenia, I was at the mall with one of my best friends, Emily. I’m sure we were trying to find cute boys to talk to. There was laughing and talking and more laughing….so much in fact, that when we walked by a mirror, I noticed that I couldn’t smile. We figured we were just having too much fun, and that my face must be tired. Which it sort of was, but it’s not exactly normal for your smile to wear out.
The next time I noticed it, I was at school and really conscious of how hard it was to move food around in my mouth. I couldn’t remember if that had always been the case and I just never noticed, or if it was new. Then I was playing the piano and my pinky finger wouldn’t move to reach an octave. By this time, I had a feeling something might be wrong, but I still hadn’t really talked about it.
A few days later, I saw a commercial that asked “Do you sometimes have trouble moving parts of your body?” And I realized, YES, I DO! According to the ad, I had multiple sclerosis – and that’s what I told my mom. Can you imagine your 14-year old daughter coming to you convinced she has MS? That was the start of my diagnosis, and I was fortunate to have an amazing neurologist that figured it out fast.
Though we knew what we were dealing with, it didn’t really get easier. I was at the doctor’s office almost every day after school. When I was feeling strong, I could raise my arms above my shoulders, or lift my head off a pillow. Through high school and college things were better, but not great. My smile was my barometer, and it was never much more than a grimace. It was so hard; my mouth was affected more than anything else, and it was years before I smiled fully again (but I did)!!
Today, my smile is not perfect, but I’m in a chemical remission where it’s mostly under control with medication. I feel so lucky every day; I really didn’t believe it was possible to feel this good again. I’m smiling BIG while I write this.
The funny thing is that Myasthenia has actually led me to a pretty exciting change in my life.
I recently left the corporate world to try and do something on my own. I started a small company called The Pill Holder that sells high quality stainless steel pill holders. They’re stylish, discreet, and crafted in the USA. I’m donating 5% of my proceeds to autoimmune disease research, and I am absolutely beside myself with excitement for this!!
I’m building incredible connections with an amazing community of people, and I really thank you for letting me share my story with you.
With Great Respect and Love,
Kelly McNelis Senegor
Women For One