Columns

I share a lot online. I share medical ups and downs whenever possible. I share the audiogram roller coaster of going Deaf. I share the ebb and flow of motherhood. I share the stormy tides of body politics in a world that doesn’t take kindly to stomas and scars. It’s…

The cystic fibrosis community has access to three cystic fibrosis transmembrane conductance regulator (CFTR) modulators right now: Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), and Symdeko (tezacaftor/ivacaftor). These CFTR modulators are each approved for specific mutations and age groups. If you’ve been following the progress in this area, you’ll be…

A common perception about those with disabilities is that when they find a job, they are so appreciative that they are the most dedicated, loyal employees in the building. A recurring theme in conversations that I’ve had about working with chronic illness is that those of us with…

I am going to explain what it’s like being in this body. But before you read this, you need to know it’s not because I have a “woe is me!” attitude or want condolences or pity. I am lucky to have this body. This body is lucky to have me.

I want to start this off with the disclaimer that I have never been a morning person. I am a night owl with a coffee addiction and a second-shift job. However, there is much more to the story. Several months ago, I noticed myself starting to frequently use the phrase…

The life of a person with CF is constantly affected by language. A common debate in the community is how best to label us. Is it better to call someone a CFer or a person/adult/child with CF? To some, CFer means their life is singled down to one identifying characteristic,…

Life with cystic fibrosis (CF) has made me all too aware of the ticking clock. Having a natural tendency to be impatient, I’m a person who wants things done and over with now. Results have to be instant or they’re unsatisfactory. What I want…

I’m not sure what I’m here for, but I hope it’s something good. From the ages of 8 to 12, I thought I was designed for warfare. My father served in the military, and don’t we all aspire to do as our parents did?…

It sucks being sick. This is a fact. But, contrary to popular belief, being sick doesn’t make you a better person. This is also a fact. CF friends are once in a lifetime. (Photo by Bailey Anne Vincent) I can be the most hyperbolic person ever. I…

I’ve always been able to eat whatever I wanted. That’s just a part of growing up with CF. Kids are picky eaters to begin with, but when you combine the inability to gain weight with pickiness, it results in headaches and frustration. So, when I was a kid, our doctors…