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.