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Showing posts from June, 2023

Becoming Real

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                                                                                       "It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand." - The Velveteen Rabbit by Margery Williams I was not as familiar with this story as I am with other “children’s” stories.   But when I read this, the ears of my heart...

When They Told Me I Might Die

  So here I am, back at the U of M, finally in a room at like 2 in the morning.  My saving grace was that it was December, so I had new doctors once again.  And this time, they were GOOD.  I will never forget Dr. Paola Moretti.  He is the second doctor I credit with saving my life.  He looked me right in the eye and said, "We WILL figure out what's wrong with you."  And I totally believed him.  And he kept his word. On December 9, 2000, my team of doctors walked into the room looking quite somber. I knew that at this point, none of the tests, bloodwork, LP's, EMG's, etc had come back positive. One negative after another.  Dr. Moretti said, "We have narrowed your condition down to 2 things:  one of them is Myasthenia Gravis, which is treatable, but there is no cure.  The other is a form of bulbar palsy that is degenerative and terminal."    I just blinked.  I was 29 years old.  I had been mar...

June Means Myasthenia Gravis Awareness Month!

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                                                                         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 27 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...

Why Me? Why Not?

I have had the worst 18 months of my life. 2022 was a nightmare. A complete and total nightmare.  I was so happy that 2023 was arriving! Well, I made it 20 days into 2023, and then I got sick, AND broke my foot when I fell going to find Shadow. I walked on said foot for over a month before I finally got in to the foot doctor. (I didn't call right away,  but I called mid-February, and didn't get in for 2 weeks. I told them I couldn't walk, but that didn't speed things up at all.) So the doc did x-rays, and discovered a stress fracture. It wasn't even the same bone I broke 4 years ago! They gave me this sad little black shoe that was miles too big and told me to stay off my feet. Well, I don't always follow doctor's orders.  I know, I know, shocker, huh? So I've been on it way too much since then.  Last June (way before this fracture), I started having problems with my back and right hip (and bum!). A year later, I'm still having problems. Since I brok...