– Leah Nash
I was about 30 years old when I started noticing I was having trouble talking, eating, swallowing, and smiling. It wasn’t consistent. It happened every now and then and I thought, “Maybe this is all in my head.” But it wasn’t. It kept happening. My eyes drooped. I sounded like Elmer Fudd. I started losing weight. I was way more tired than usual. Honestly, losing my smile just might have been the worst. I went to my primary care physician, who is also my friend, and he took one look at my droopy face and said, “You’ve got to see a neurologist.” He wrote a prescription for a local neurologist to see me immediately.
I saw the neurologist. We started drawing blood. Lots of blood. I got the results. Myasthenia Gravis. What is that? How do you PRONOUNCE that? I have an autoimmune neuromuscular disease with no cure? I got on medications. Steroids. Lots of steroids. Other drugs too. I have been on prednisone for ten years now. It’s not good. Google it.
I’m 41 now. 11 years later. I’ve stayed in the hospital. I’ve switched my meds and dealt with side effects. I’ve fallen walking up steps. I’ve downloaded apps to use when people couldn’t understand what I was saying. My friends and family have cried. I have cried.
And I’ve laughed. And I’ve been lifted up. And I’ve been loved. I’m surviving and living and loving as hard as I can. I look for ways to educate people about Myasthenia Gravis and living with a rare, invisible disease. It’s easy to forget when I’m having a string of great days but I never really do. I’m grateful for those great days and smile, even if it’s a little crooked sometimes.