Saturday, June 3, 2017
When most people think of the month of June, they think of summer picnics, weddings, days at the beach, yummy summer produce and more.
When I think of June, I think of Myasthenia Gravis Awareness. Because I have Myasthenia Gravis (MG), a neuromuscular disease that has occupied more of my life in the last 20 years than anything or anyone else.
Before I was diagnosed, I went to many doctors. I heard it all: I was just lazy, I was fat and needed to lose weight and all my problems would go away, all of my symptoms were in my head, I had an anxiety disorder, I just wanted sympathy. You name it, I heard it. It was devastating. Knowing there is something seriously wrong with you and no one listening is the most terrifying thing I have ever experienced.
Finally, I *begged* another doctor in the practice I was patronizing to see me. (It was their policy to not switch patients from one doctor to another, even when one doctor is willing to let you die!) This new doctor saved. my. life. He took one look at me and said, "You are very, very sick." I think I cried with relief.
He ordered every blood test known to man, and the trips to the "ologists" began. Pulmonologist, including sleep study; cardiologist, including echocardiogram; neurologist, including lumbar punctures, CT's, MRI, MORE bloodwork; psychologist (actually psychiatrist, but that's not technically an "ologist"... going for continuity here, people!) etc. The first neurologist I saw told me I had a tumor on my spine without doing any concrete diagnostic tests. Needless to say I never saw him again.
On October 13, 2000, 5 *years* after my first symptom, I had an MRI under sedation. I quit breathing, turned cyanotic (blue from lack of oxygen) and they had to call a code and bag me through the rest of the procedure. So much for symptoms being psychological; even the *best* actors or nut jobs couldn't fake not breathing when unconscious.
Four days later I was flown via helicopter to the University of Michigan, intubated, and dying.
To be continued....