Month: July 2017

The Truth About a Chronic Disease Flare

I’ve had a tough week inside my skull, a place I like to call my turtle shell.  It’s a place I retreat to, especially when things are not so spiffy, and sometimes I catch my thoughts ricocheting off of every wall. After several months of minimal, almost zero symptoms, last Thursday evening, my bladder decided she was being neglected, and therein began the worst flare I have had in months.  Still, there is no pain, which I should be so thankful for, but things are irritated and I can feel it, and I just really loved the months of...

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The Importance of Persistence

My husband and I have lived in our house for four and a half years and I am finally painting our bedroom. I hate painting.    I hate painting trim the most.  I hate priming the trim even more. I was considering my dark feelings toward the process and I came to the realization that it’s the repetition with very delayed rewards that drives my discontent.  If any of you have ever painted wood trim knows, it is a process!  And I skip half of what you are supposed to do.  What is sanding??? Anyway, it takes at least three...

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Our Pain is Real

It seems obvious, but half of the terrible things you go through as someone with a chronic disease are caused by other people. And that’s sad. Rather sad. Ruthlessly sad. One should not have to prove their pain, and yet, most of us with chronic disease have had to explain our pain to disbelieving ears.  It’s like everyone wants to believe we just have a tickle in our throat or a piece of toilet paper stuck to our shoe.  That or they think we’re making it up.  The latter is worse.  It means they think we’re doing it for...

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Chronic Disease is Hard

I brought my kids over to make “pigs in a blanket” at my grandparents’ this week. They played with giant bubbles, rode on my mom’s rocking horse from the 1950’s, and ran around the billiard table my grandpa keeps in the basement amongst items from a bygone era. On one wall hangs a quilt put together by my kids’ great-great-grandmother and her quilting club in 1940. On another wall, a small coat rack holds my grandpa’s tennis shoes that he wore playing basketball as a skinny high schooler in Missouri. One item that stood out to me, as my...

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Spinal CSF Leak

As I was scrolling through Facebook yesterday, I was caught by a post someone had left on my husband’s cousin’s page.  It was the most beautifully crafted support of a friend. In it, the author, Farzeen, discussed the injury my “cousin-in-law” had and how deeply it affected her life. All I could hear as I read it was love, and a fierceness to overcome and make the world aware of this terrible affliction.  As there is no posisble way that I could explain Spinal CSF Leak as eloquently as Farzeen, I am copying and pasting some of her words...

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