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Lung function — typically measured by forced expiratory volume in the first second (FEV1) — is the boogeyman for people with cystic fibrosis (CF). Whether it’s our lung function, our weight, our BMI, our liver levels, or our glucose levels, our lives are an assemblage of numbers, values, qualifiers,…

9 a.m. I should be starting my day with the smoothie bowls that are stocked in my freezer. You can add gluten-free granola and honey to the pre-blended nutrients, but granola doesn’t sit well with me. I ate a protein bar and a banana on the morning of my…

My head is in the clouds right now. I took a heavy sleeping aid about half an hour ago, and wooh, that stuff hits fast and hard. The sleeping aid has become necessary some nights. I don’t know how to sleep when my phone keeps buzzing, buzzing, buzzing. I pick…

I entered through the hospital doors and walked about 30 feet before becoming completely out of breath. I had a split second of panic before I remembered the heavy backpack I was wearing. I called my mom, who was ahead of me. She turned back and took my backpack from…

A few weeks ago, an article with the headline, “Vertex sinks on reports of deaths of patients taking cystic fibrosis drug,” circulated online. The medication in question was Symdeko (tezacaftor/ivacaftor). I saw that the article was being shared among my many friends with cystic fibrosis (CF) and within…

I’m sorry. I’m sorry for being sorry. Do you ever feel like all you do is apologize? It’s what I do best, and for that, I’m sorry. My friend Maria said something the other day that stopped me in my tracks: “Disabled and chronically ill people don’t need to…

I dislike making other people feel uncomfortable. Turning a light-hearted conversation into a heavy one by referring to my sister’s death, or standing up for myself to reduce infection risk, is the social equivalent of getting an IV to me. Part of my journey has been learning to approach my…

Chronic illness can feel like a competition. It can become a game of “who has the most badges,” like “minimum pieces of flair” in the movie “Office Space.” Who has the most symptoms and diseases? Who will win? Sometimes, we even post our badges online like identity pieces to…

Toward the end of my time in college, I faced an identity crisis. For more than seven years, I had been dead set on becoming a physician. I had no question in my mind: I wanted to use my experience of cystic fibrosis (CF) for good by training to…

I might break up with my CF clinic. It’s not them, it’s me. They are doing a good job. My CF doctor is fine. My nurses, dietitian, and support staff are really cool. And everything is basically OK. They’re nice people. It’s fine. The problem is, I’m not sure what…