Viewing: Rare Disease
August 3, 2017
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 morePosted in CVID, Rare Disease, Relationships | By Stacey Philpot
May 4, 2017
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 morePosted in Chronic Life, Coping 101, Rare Disease | By Stacey Philpot
January 12, 2017
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 morePosted in Disability, Rare Disease | By Stacey Philpot
January 9, 2017
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 morePosted in chronic illness; support, Rare Disease | By Stacey Philpot