Viewing: Rare Disease

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