Viewing: rare disease

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

Jul 7

July 7, 2016

3 Keys For Finding Online Support

3 Keys For Finding Online Support

You own yoga pants in seventeen various colors and styles. You save makeup for special occasions and doctor appointments. Occasionally, you remember to put on a bra. You respond to invitations to hang out by asking, “Sure, do you want to come over here? ” But, other than doctors, nurses and pharmacists you haven’t actually seen another person in more... Read more

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

May 2

May 2, 2016

How to Navigate Sickness in Marriage

Till Sickness Do Us Part?

On a balmy June evening, with the sand beneath us, the waves behind us and the sun bathing us in its golden light, my husband and I committed our lives to one another. “For richer or for poorer, in sickness or in health, as long as we both shall live” we giddily declared our love for one another. Which wasn’t... Read more

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