Not Enough Words
Do you ever save up words inside you? Not as in collectibles or coupons. But as in baking Christmas cookies ahead of time and freezing them so they’ll be ready for frosting at a moment’s notice.
I’ve been storing words all summer.
Angry words.
Terrified words.
Thankful words.
My husband is dying.
That one sentence takes up a lot of space.
We have hope.
The disease doesn’t have a cure.
Yet.
There is medication to slow the disease.
And we are hoping to get on it soon.
Angry. Terrified. Thankful. Hopeful. Angry.
For feelings this deep, there aren’t enough words.
Tony Doesn’t Look Sick?
The photos I take and post are of his good days. The days when he can be up and play with Corbin. Or do some dishes. Or sit outside. He may even be up to riding a bike.
And you’d better believe if you ask him how he’s doing he’ll make a joke, or send a gif in reply on the good days.
The bad days are… bad.
I won’t be posting pictures of those days.
Tony told me that no matter how much time left he has with us, he is grateful.
Living with hATTR
There is no current cure for Amyloidosis. But in the last 9 years, there are significant advancements in NEW medications that can slow the disease down, and change the story.
We believe that living with hATTR = living with hope.
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ABOUT THE AUTHOR
My name is Sue Skavlem.
I'm a visual messenger – not a doctor.*
My husband has Amyloidosis. And it took me a year of googling to understand what an "adult-onset multi-system genetic disease" was.
After learning that "Amyloids have the tensile strength of steel", I came up with the "Accumulating BBs Theory."
My hope is to promote awareness of the disease, update our friends & family on our journey, and create resources other families with hATTR can use.
*Information in this article is meant to inform, but is not medically reviewed, nor should it be used to self-diagnose. Please talk with a medical doctor about free genetic testing if you or a loved one may have hereditary Amyloidosis.
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