In November 2016 I ran a full marathon for the first time, the following May I was in the hospital. My MG came on quickly and hard, in less than 6 months I went from running daily and being in the best shape of my life to being unable to lift my head. I first experienced double vision on and off and ended up going to urgent care when my face began to droop. Doctors first thought I was having a stroke since I was so weak and had some unusual symptoms for someone my age. I was lucky enough to find an ophthalmologist who referred me to my neurologist who had seen MG before.
During one of my lowest moments with this disease my husband found me on the floor barely breathing and had to carry me into the emergency room. Last year I spent a total of 18 days in the hospital and had two crises and was intubated. Like a lot of us MG warriors I am still working to find that magical combination of medications and treatments that allow me to function. You know you’re cool when you’re in your 30’s and on first name basis with your pharmacist. I now walk with a cane on bad days and the double vision has never completely left.
I am still coming to terms with being unable to do the same things I used to while trying to keep hope that I will go hiking and running like I used to. There are definitely days I still get depressed about everything that was taken and don’t handle it well. Since my diagnosis I have finally finished college and make big strides in my career, I might not be able to control my MG but I am going to make the most of the time I have while I can.
(The photos below were taken a little over 6 months apart.)
– Fellow Warrior