Wednesday, June 26, 2013

Myasthenia Gravis Awareness Month

Myasthenia Gravis Awareness Month is coming to a close.  July 1 will come and go, and another MG Awareness Month will be in the books.

But there is something I challenge all of you to think about:  Myasthenia Gravis NEVER goes away.  Junes will come and go, but MG, unless and until we find a cure, will not.

Some of us will eventually change our profile picture back, and stop posting every day about the disease that has taken so much from us.

MG has taken my singing voice.  It has taken away my ability to breathe naturally (without the trach).  It has taken away my ability to work.  It has taken away my social life.  I have to worry about germs all. the. time.

After this last winter, being mostly sick from October through May, I have to be even more careful. It seems that my lungs are getting worse every year.  What I wouldn't give for a carefree day to go to all the public places I want to without freaking out about getting sick.

The Children's Museum.  The movies!  The zoo.  The fair.  Everywhere I go I just see filth and germs.  I have to so I can protect myself.  But it gets so old feeling like a freak.  Wiping tables down wherever I go.  Keeping the hand sanitizing companies in business.  Trying to raise a "normal" kid who's not a germophobe or hypochondriac.

That's the hardest.  What it does to Jacob.

Anyway.  My lament is over for today.  Please don't forget: MG is not a once-a-month event.  Nor should Awareness be....

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