St. Louis, Missouri mwwmg@mywalkwithmg.org

Living With MG – Ebony’s Story

living with myasthenia gravis

In December of 2018, my life was going great I was in Nursing School full time, a full time mom, and working part-time. Then my body started to change. I began having joint pain to the point where I could not drive or get around. I went to the ER and was sent home thinking it was just stress causing me to be unable to use my hands to open doors, twist caps, etc. I thought well maybe it was stress and around that time I was working out hard at the gym. I went home and finally it went away. In mid-February, it happened again, and I could no longer do simple things like makeup or even throw up the peace sign because the muscles in my hand felt numb. I still thought it was joints then suddenly it would go away.

living with myasthenia gravis

In March, I noticed that my left eye began to droop, and I couldn’t smile no matter how hard I tried. My smile turned into a snarl. People started to notice also and kept asking me “Are you OK?”, “Are you tired?”, “Are you high?”, which was extremely insulting to me. I began experiencing other symptoms, couldn’t suck out of a straw, and became very tired. I couldn’t hold a conversation with my friends because my voice became a problem and I even had memory disturbance. I had no reason to feel or look this tired all the time. I started waking up with doubled vision and thought I needed glasses until the optometrist tole me my vision was fine, but I had extremely weak eye muscles. I told my mom after going through all these different symptoms and feelings. She said she noticed over breakfast how it seemed like I was struggling to swallow. She sent me to the ER where I was finally diagnosed with Myasthenia Gravis. I was glad to know what these symptoms were and it wasn’t all in my head. I was treated in the hospital for a couple of days and started to feel better than I had in a long time. Although I was relieved, I was disappointed at the same time because of this disease and preparing to graduate from nursing school. 

This disease has taught me to take my health more seriously. It has taught me to listen to my body when I know something is wrong and not just brush off symptoms when I know something is not right. I felt better after finally getting answers but on the other hand I still felt bad. I’m currently trying to change my diet in order to prevent future symptoms of Myasthenia Gravis. I never thought it would be me. I still want to take care of people, but I now realize that I also have to take care of myself first. I am determined to not let this disease beat me! I fought this disease and become a nurse!! I will advocate for myself and others by bringing awareness to this invisible disease.

myasthenia gravis
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