Columns

Balancing Mental and Other Health Needs Within CF Community

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun. Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging,…

The Absurdity of Not Being Prepared for Pain

Military hospitals handled most of my cystic fibrosis (CF) care. Many members of the military worship pain (“Get some! Rub some dirt in it, hooah!”), and assume you do, too. CFers inevitably encounter intense pain throughout the treatment of their disease.

The Value of a Friend Who Breathes Heavily

Kathleen belaying Brad as he climbs. Not quite near the top yet. (Courtesy of Kathleen Sheffer) There are times I feel especially mortal. Such as when I’m feet from the top of a rock climbing wall, and I realize I’m relying on a single rope…

A Recipe for Peace

Second in a two-part series about the role of anger in a CFer’s life. Last week, I wrote about a lifetime of anger because of cystic fibrosis. The fury boiled over during an episode of ICU psychosis and septic shock. I finally…

Let’s Talk About Marijuana

Mom and I had flown to Denver to meet a specialist and strategize treatment for my nontuberculous mycobacterium. Part of the clinic visit concerned treating my barren appetite and nonstop nausea. We’d tried nearly every anti-nausea prescription by then, and…

Learning to Live ‘Off-book’

I feel the freest when being told what to do. Take 1 tablet by mouth three times daily for 14 days. Flush each lumen of intravenous catheter with 5 mL as directed. Do not exhale into the mouthpiece…

When the Patient Is a Hostage

The gastroenterologist (GI doctor) shut the clinic door and towered over me, strong, bronzed, and healthy. He checked my chart and saw I had lost 3 pounds. He abruptly barked at me about my “lack of effort” in gaining weight. He yelled that it’s as simple as forcing…