Monday, June 22, 2015

Unhappy Anniversary!

How do you mark an anniversary you'd rather forget?

Five years ago this week my life as I knew it changed forever. It was a week that would lead me down the path to chronic, incurable illness, to a life with Myasthenia Gravis!

When a life is changed because of illness or an accident one can't help but remember. Some celebrate a new chance at life, while some reflect on things they have lost, others fall somewhere in between. I'll admit, I find it difficult to celebrate a life with Myasthenia Gravis. But I also don't spend every waking moment feeling sorry for myself.

I've taken a few rides on the whoa is me train, and been the guest of honor at my own pity parties...I don't believe I acquired Myasthenia Gravis for some bigger purpose, to punish me for wrong doings in my life, or to strengthen my faith. People often ask "Why me?", I've thought it for a brief moment, but also thought "Why not me?" I'm no more special than anyone else who has meet with an unfortunate turn of events....

I often replay the words my neurologist said to me in my head "I hope we never have to talk about this again, I want to test you for Myasthenia Gravis!" He and I are still talking about it today. We talk about what muscles aren't working as well as they should, what my new normal has become, and what treatments we have exhausted, or will try in the future, all in the hope of returning some normalcy to this crazy, illness ridden body. 

There are days when I'm too weak to lift a coffee cup, hold my eyes open more than a slit, or have the strength in my hands to press a computer key...I must walk with a cane, use a walker or an electric wheelchair because I can no longer walk more than a short distance... I take medication and IV infusions that only improve my muscle use for a short period of time, and must rely on family and friends to help with some of the most basic things some take for granted. 

I do find some irony in the fact that I have acquired Myasthenia Gravis in the month of June! For those who haven't noticed:
JUNE IS MYASTHENIA GRAVIS AWARENESS MONTH! So please join me in spreading Myasthenia Gravis awareness as part of my Unhappy Anniversary celebration, I can't think of a better gift to receive... 

Monday, June 15, 2015

Can There Be Too Much Awareness?

You may be wondering why I ask...
June is Myasthenia Gravis Awareness Month
MG is a rare, incurable, autoimmune neuromuscular disease. 

It affects the voluntary muscles, it can cause weakness of your arms and legs, blurred or double vision, slurred speech, and impair the ability to chew, swallow, and breath.

If you are a person living with such a disease there can NEVER be too much awareness. You spend every minute of every day hoping someone will find a cure, or a better treatment. You hope and pray that when you post something on social media it gets shared, liked, retweeted, or commented on. You hope a celebrity will take up your cause and agree to be a spokesperson for your disease. You try to dream a challenge that will flood the internet with inspiration, awareness and donations for a cure.


So PLEASE don't ignore that post, tweet or video, someone's life may depend on it...
Someday it might be YOUR life, or that of YOUR CHILD...

If you would like learn more visit
The Myasthenia Gravis Foundation of America

or follow #IhaveheardofMG & #stompoutMG on