Viewing: Rare Disease

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

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

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

Jan 9

January 9, 2017

Meagan's Secret

Meagan’s Secret

Meagan is smart and witty and successful. Meagan is unflappable. She has three children, who are so cute you could eat them with a spoon as well as a handsome, successful husband. She is living the suburban American dream. But not long ago Meagan told me a secret. She has Hepatitis B. A blood-borne disease, often considered an STD. She... Read more

Posted in chronic illness; support, Rare Disease | By