Diagnosed with Myasthenia Gravis in 1995.
I realized recently that I’ve been sick for more of my life than I’ve been healthy. Ninceteen years ago I was starting my Freshman year of high school – I was 14, and I loved to play soccer and softball and do normal teenage girl stuff. Then one day things started to change, and I had no idea that someday I’d be 34 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, and I’m sure we were trying to find cute boys to talk to. Emily and I are still friends to this day, and when we’re together we laugh a lot. So 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. That’s right, I couldn’t smile. What the heck?!? 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.
Some time went by, a few weeks maybe, and then 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 different. 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 going on, but I still hadn’t really talked about it.
A few days later, I saw a commercial on TV 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. So 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 absolutely amazing neurologist that figured it out fast.
I was at the doctor’s office almost every day after school reviewing how my meds were working and doing strength tests. When I was feeling strong, I could actually raise my arms above my shoulders, or lift my head off a pillow, definitely not the standard I was used to.
Once we knew what we were dealing with, it didn’t really get easier. I was taking Prednisone (which gave me a triple chin that was particularly fun in high school) and Imuran, along with a medication called Mestinon. I was at the doctor’s office almost every day after school reviewing how my meds were working and doing strength tests. When I was feeling strong, I could actually raise my arms above my shoulders, or lift my head off a pillow, definitely not the standard I was used to. My mouth was affected more than anything else, and it was years before I smiled fully again (but I did)!! A lot of the time I couldn’t swallow, and I’d choke on my saliva. Even talking, which is one of my all-time favorite things to do, was too hard, I’d slur my speech.
I spent a lot of time in the hospital that year, with a visit to intensive care for a week or so. I also had a thymectomy, where they took out my thymus gland.
I’ll fast forward, but I went through high school and college doing better, but not great. My smile was my barometer, and it was never much more than a grimace. It was so hard not to be able to smile, -it’s difficult to explain what an important thing that was for me.
Then, a few years after college, I started to do better. My neurologist had said that people sometimes improve about 10 years after thymectomy, and that was what happened! All of a sudden I couldn’t stop smiling at myself in the mirror!!!
It’s not perfect, but I’m in a chemical remission where it’s mostly under control with medication. I freak out now when I have the slightest symptoms, because I remember how bad it was and I really don’t want to go back. I still struggle with some things, but if you met me, you’d probably have no idea. I feel so lucky every day, I really didn’t believe it was possible to feel as good as I do today. I’m smiling BIG while I write this.
So the funny thing is that Myasthenia has actually led me to a pretty exciting change in my life.
It really wasn’t until recently when I started exploring the online communities that are bringing people like us together that I realized this connection was missing in my life!
I recently started my own business – Cielo Pill Holders. The best part of building it has been connecting with people who can relate to what it’s like to have an autoimmune condition. When I was diagnosed, it was 1995 and there were pretty limited options to find support, so I never really did. It really wasn’t until recently when I started exploring the online communities that are bringing people like us together that I realized this connection was missing in my life! I thought since I was doing better I didn’t need the support, but Myasthenia is such a part of who I am, it doesn’t matter if my symptoms are present or not, I need the relationships with people who can relate. It’s an amazing feeling when someone gets it without an explanation.
I never could have imagined how Myasthenia Gravis would impact my life – both for better and for worse – and my guess is that it’s not done yet.