Aug 17

August 17, 2017

3 Things I Want You to Remember on Bad Days

3 Things I Want You to Remember on Bad Days

Just when we think we might be getting a handle on things, our latest diagnosis or setback, we find ourselves reeling. Be it a flare, a concerned call from the doctor, a flagged set of numbers in our weekly blood work, or a day when the pain is seemingly unbearable, it can be hard to remember things might ever be... Read more

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Aug 14

August 14, 2017

How I Learned the Simple Life Lesson of Pause and Perspective

How I Learned the Simple Life Lesson of Pause and Perspective

When I first met my neighbor Josie (who I nick-named ‘Trouble”) she was a feisty, kick-butt go get ’em kind of gal who ran circles around  women 20 years her junior.  She was a gourmet cook, an adjunct college professor and an all-around real-life know-it-all. For some reason she took a liking to me and chose to fit me into her... Read more

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Aug 10

August 10, 2017

How to Find the Light When It All Goes Dark

How to Find the Light When It All Goes Dark

Today started out on an aggravating note. The repair guy at the house there to fix some damage from our lightning strike showed up late, causing me to run late for a meeting with an editor. My head has hurt for days, and it decided to pick today to amp up the pain to ten. There were some troubles with... Read more

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Aug 7

August 7, 2017

To the Ones Who Let Us Scream It Out When the Bottom Drops Out

To the Ones Who Let Us Scream It Out When the Bottom Drops Out

This week I stood on a wooden platform. Sweaty, eager, teenagers in cut off shorts holding souvenir cups surrounded me. The soundtrack, a cacophony of nervous chatter about what might happen should the coaster become stuck or spontaneously fall apart and the click-click-clack sound of the coaster slowly rising followed by the thrilled screams of riders. My stepdaughter and I... Read more

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Aug 3

August 3, 2017

The Text of Shame

The Text of Shame

It’s your best friend’s birthday. You bought tickets to the show she’s been wanting to see for the last year and promised you would go no matter how sick you got in the hours leading up to your departure. Leaning into those words, your dear friend has skipped both the 24-hour and 4-hour check-in texts. She’s oblivious to the raging... Read more

Posted in CVID, Rare Disease, Relationships | By

Jul 31

July 31, 2017

Learning to Love Our Broken Bodies

Learning to Love Our Broken Bodies

Some might say my body has been through a lot. Yesterday, I cleaned out my dresser drawers and found five pairs of hospital issue no-slip socks. I also discovered clothing in sizes 4-16, old nursing bras, the remote to my bladder pacemaker, and a bikini that would now fit one-third of my body. It’s hard to fathom the number of... Read more

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Jun 22

June 22, 2017

Giving Grace in Marriage When Chronic Illness is Present

Giving Grace in Marriage When Chronic Illness is Present

Not long ago, Ryan and I teamed up with the amazing folks over at The Knot Project to talk about what showing grace in a marriage where chronic illness looks like for us. Ryan is thankful I don’t kill him in his sleep for all the snoring, and I confess to having a few control issues. 🙂 Check it out! Share on... Read more

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Jun 19

June 19, 2017

Dear Doctors, May You Always Use Your Powers for Good.

Dear Doctors, May You Always Use Your Powers for Good.

Dear Doctors, May you always use your powers for good. Perhaps, the power goes to your head after a while, or like the smell of your own feces, you become immune to it. Yet, you have it just the same. We come to you broken and ashamed, afraid. Yours for the molding, the putting back together or the shattering beyond... Read more

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Jun 15

June 15, 2017

3 Truths About Relationships in the Belly of the Cave

3 Truths About Relationships in the Belly of the Cave

If like me, you’ve known sickness of any kind, or even simply walked through a particularly difficult time in your life, you’ve most likely also experienced a myriad of responses from those close to you. Maybe the people you least anticipated being the heroes in your story showed up on the scene and continue to show time and time again. More... Read more

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Jun 12

June 12, 2017

A surgery happy dance. Twerking-style.

A surgery happy dance. Twerking-style.

It’s weird to be happy about surgery. Of course, I would prefer not to need surgery. I would prefer that my insides worked the way they’re supposed to. I would prefer not to have had IBS for 40 years. But all my preferring doesn’t change reality. And the reality is that I need surgery and I’ll be glad to finally... Read more

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