October 2024
This week was hard hard hard.
And this journal post is more of a nod to seeing light further out. To holding onto hope. And to developing resilience.
BUT. Sometimes in the moment. Or for a span of time. It Just Effing Sucks.
I don't know about you, but in the middle of super heartbreaking-I-cant-fix-this-and-there's-no-end-in-sight moments, I don't want the following:
NOT HELPFUL
"You're so strong."
"It's ok."
"You've got this."
Now, that may work for you. And if so, kudos. No-one is going to take that away from you, least of all me.
The point is, you don't know what works for you, unless you go through the storm. You try something. And maybe, just for a moment, it doesn't suck so much. It lightens the load.
Find those things. Write them down.
And when it gets so hard, you want someone else to deal with your life for a while.
Do the things that get you from here to hope.
Here are some things that work for me.
Feel free to try them for yourself, or add your own!
TRY THIS INSTEAD
Phone-a-friend Group Chat With Close Friends Who KNOW
Reading Something Totally Not Relevant To My Life Turning Off The News Buying Flowers For Myself
Find what works.
♥ Sue
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Living with hATTR
There is no current cure for Amyloidosis. – YET. 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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