Viewing: rare disease

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

Posted in Chronic illness and relationships, chronic illness; support, Chronic Life, Relationships | By

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

Posted in Chronic Illness and body image | By

Jun 1

June 1, 2017

When We Drown in Our Not Enoughness

When We Drown in Our Not Enoughness

“Not to be mean, Mommy, but Daddy is nicer than you.” These are the words my five-year-old daughter graces me with as she fills our minivan with her endless chatter. So far, I’ve been chastised for my lack of passion in response, my tendency to stare blankly ahead, and general lack of entertainment value. I wonder silently if Daddy might... Read more

Posted in Parenting and Chronic Illness | By

May 4

May 4, 2017

When You Aren’t Sure You Can Live Like This

When You Aren’t Sure You Can Live Like This

Like a bird I soared, high above the clouds, soaking in the sun, inhaling the sheer goodness of life. I breathed in possibilities and exhaled delight. Surely, the sun was a more golden hue than it had ever been before. Was that a lullaby of babies laughing I heard? All was right with the world. And then I plummeted to... Read more

Posted in Chronic Life, Coping 101, Rare Disease | By

Apr 17

April 17, 2017

When It Feels like the Whole World Is Clueless

When It Feels like the Whole World Is Clueless

When I was young and brave or stupid, you decide, I flew to Dallas for Thanksgiving to visit family just as I transitioned into my second trimester of pregnancy. It was my first, and I was violently ill most of the time. If memory serves me correctly, I was twenty-one years old, sixteen weeks pregnant and signed up for a... Read more

Posted in Chronic Life, Parenting and Chronic Illness | By

Feb 27

February 27, 2017

Love Is Blind and Fabulous

Love Is Blind and Fabulous

I’ve long since considered myself defective. I picture my body as something purchased from the bottom of a clearance bin at your local Dollar Store. Somewhat like the twenty-five-cent toy you buy your child as a form of bribery to get them quietly through the check-out line, knowing full well it will break into a thousand tiny pieces before it’s... Read more

Posted in Chronic Life, Love, Relationships | By

Jan 12

January 12, 2017

Fake It, Because You Have It Make It.

Fake It, Because You Have It Make It.

I’m chronically ill. I have, among other things, an extremely rare form of MS, Trigeminal Neuralgia, and many forms of chronic migraine and headache. It makes day to day living a challenge, but a challenge I graciously accept. Certainly, don’t want to be dead. I still manage to work part-time. I don’t have any other choice since it’s the only... Read more

Posted in Disability, Rare Disease | By

Nov 6

November 6, 2016

How to Cultivate Gratitude in the Midst of Hardship

How to Cultivate Gratitude in the Midst of Hardship

2012 was that year.  The Murphey’s Law year.  Everything that could go wrong did, and it took everything we had to survive it…literally. It was the third year of my son’s leukemia treatment, the total duration of which lasted over 3 years.  Additionally, I started out the year with mono and thyroid failure, which I attribute to the enormous stress of parenting... Read more

Posted in Coping, Disability, Faith, Grief, Marriage, Relationships, Self-Care, Special Needs Parenting | By

Jul 18

July 18, 2016

How Chronic Illness Changes Our Perspective

How Chronic Illness Changes Our Perspective

We spend our days, our years perhaps, searching for answers, for a word that explains what’s happening in our bodies or the body of our child, our sister, our mother, our partner. We believe, we hope, we long for the word to come and bring with it perimeters, a treatment plan, hope. Surely, if someone can tell us what’s wrong,... Read more

Posted in Chronic Illness and Diagnosis, Chronic Life, Parenting and Chronic Illness | By