Friday, June 1, 2012

June Is National Myasthenia Gravis Awareness Month

And I got to start it off with an ENT appointment this morning and then plasmapheresis this afternoon.  June is a very important month for people with MG.  While we try to educate people about MG ALL year long, we really push in June.

On June 9 there is a walk in Grand Rapids to raise money and awareness for MG.  I will not be walking, but I will be there will my jewelry, and 50% of all sales will go to the Myasthenia Gravis Foundation of America, Great Lakes chapter.  You don't have to have MG to go and support the cause.

I went 8 years without an official diagnosis.  Five of those years were so detrimental to my health I should have died.  Obviously the Lord wanted me around for a reason, because I am still here.  One example is that the percent of carbon dioxide in my blood was 77.  "Normal" is between 35-45.  My number was higher than what Jacob's was when he was on a ventilator in the NICU after he was born with transient, neonatal MG.  His was like 60.  When mine was 77, I should have been brain dead, or at least have had brain damage, but I was working 55 hours a week.

When I was finally hospitalized I almost died when I had an MRI under sedation because I quit breathing and turned blue.  (If you've ever seen a medical show where they are calling a code blue and everyone comes running and they grab a crash cart and all that?  That was ME on October 13, 2000.   I know, I know, drama queen.) : )

Then I was flown to the U of M for 3 months, and had to be trached to get off the ventilator because I had double MRSA pneumonia.  Three times in 5 years that I could have easily died because NONE of the doctors I went to (and I saw DOZENS) recognized that I had Myasthenia Gravis.

Education about this disease is not optional.  It's crucial.  Education saves lives.  Simple as that.  Thanks for reading, and I hope you share information about this disease with your family and friends.  You never know, you may save a life.

1 comment:

misssrobin said...

Thank you for sharing your story.