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June – Myasthenia Gravis Awareness Month

Posted by Connie on Saturday, June 26th, 2010 at 1:12 am and is filed under Chronic Illness, DisABILITY Advocate, Health Information, Healthy or Not.
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June is almost over, but there’s still enough time to write my yearly post about Myasthenia Gravis Awareness Month. I’ve been living with MG for 7 years now. In the beginning it was so difficult that I really thought I would die. I can remember waking up at night being short of breath and thinking this would be my last moment on earth. In terror, I would hyperventilate making it worse.

That stopped thankfully and then I began to feel like my throat was closing up. At first my throat would feel numb. I don’t know how else to describe it. Then I’d feel like the opening in my throat was getting smaller. I’d be awake for hours afraid to close my eyes because I thought wouldn’t wake up.

This isn’t how the Myasthenia Gravis started. At first I felt like I couldn’t keep my right eye opened. No one could see it, but I felt it. It was annoying. Then I felt like I couldn’t move my body, like it was a dead weight. I was so tired. I remember standing in line to pick up my daughter from preschool when I was sure I would just fall right down there and sleep. I took all my might, my control to stay upright, to be able to move and talk. And then drive home.

I’d lie on the floor next to my daughter at home because I knew I’d fall asleep. At least I was close by her and would hear if something happened…I’d hope and pray.

Finally I went to the neurologist and he saw my eye drooping. It was the beginning of learning to live with this neuro-muscular disease, this chronic illness, that I take heavy duty prescription medications for, that I’ve had surgery that cracked open my breastbone, that allowed me to realize how blessed I am, how so many other people are worse off than I am and that made me the person I am today.

To learn about the symptoms of, the treatments for and the ways to cope with Myasthenia Gravis, visit the Myasthenia Gravis Association.

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1 comment

  1. Hey there! I found you blog thrugh a google blog search on my igoogle home page! I have MG too…Have had symptoms for 15 years, wet to probbaly 100 doctors total, hospitalized in 2000, no one could figure me out. They treated me for MG since it was the most likely fit; that or bulbar pasly, which is degenerative and terminal. I tested negative for everything. Finally in 2003, the test for MuSK came out, and I was MuSK+. FINALLY, after 8 years and 3 months in and out of the hospital, I got my diagnosis! I’d love you to come check out my blog! Great to have found you.
    .-= Kerri´s last blog ..Meet the Author! =-.

    comment by Kerri — June 26, 2010 @ 6:53 am

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