As part of MG Awareness month we are sharing personal stories written by individuals impacted by MG. Today’s post is written by WWMG member, Leah Nash.
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June is Myasthenia Gravis Awareness month. With all of the health awareness months out there, why would I be concerned with a disease that only affects 200 out of 100,000 Americans? Because I happen to be one of those affected with MG. Early in 2008, I started experiencing symptoms of MG. I have a mild/moderate case of MG so the symptoms began occurring infrequently. Because I was unaware of what MG was, I was also unaware of the symptoms and may have been experiencing more than I actually remember.
{MG Symptoms: Dropping eyelids, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in arms and legs, chronic muscle fatigue, difficulty breathing and general fatigue.}
My symptoms became more frequent and I finally went to my doctor. He took one look at me and sent me with an emergency referral to a neurologist. Whether luckily or unluckily, I was diagnosed with MG in the summer of 2008. I say that I was lucky because MG, like other auto immune diseases, is difficult to diagnose. I happened to test positive for the Anti-MuSK Antibody Testing which guaranteed my diagnosis. Unlucky because, well, I now knew that I had a chronic disease with no cure.
I am now on medication {that I have to take everyday} and am pretty stable. I see my neurologist once a quarter. If not on my medication, I can barely keep my eyes open, have occasionally had to pull over because of blurred vision, sound like Elmer Fudd, have so much difficulty chewing and swallowing that I immediately lost 20 pounds, have arms so weak that I have to rest from blow drying my hair and sometimes experience so much fatigue that I cannot get out of bed. One of the things that affected me the most is that I felt as if MG had stolen my smile. Here are some pics of how MG affected me:
Droopy eyes. This is me trying to open my eyes.
So many people told me that I looked tired before my diagnosis and it was because my eyes looked like this all of the time.
Because it was so hard to smile, I would often make “funny” faces in photos so that I wouldn’t look awkward. I would get upset because I knew that I couldn’t smile and my husband would say, “Make a funny face!” because he knew that was easier for me.
I have now been dealing with my disease for five years. I have had to make major changes in my life. I have had to really listen to my body and do what is best for me so that I don’t crash and burn in the future. I have made plenty of mistakes. I have messed with my medication and paid the consequences. I have had to deal with the side affects of the medications. I have had to miss out on important things because I can’t move. I have tricked myself into believing that I am okay and have gone backwards in my symptom management.
But I have also really gotten to know myself: my body, my capabilities, my capacity, my resilience. Because I am experiencing this on a daily basis, I have learned that I don’t want to miss out on life. I don’t want to have any regrets.
So I am forced to live a life of balance, which I am finding is a good thing.
And I have found my smile again.
– Leah Nash
WWMG Member