Imagine living your whole life knowing you have an early expiration date. Then you wake up one morning, and that’s no longer the case. Sounds great, right? Of course it is, but it’s so much more complicated than that. I never would have understood before living through it. Trikafta…
Path Unknown — Wendy Caroline
Wendy is a vivacious young adult who’s passionate about living life despite battling cystic fibrosis. She loves going on adventures with her husband, Andy, and their dogs, Finn and Felix. Wendy is very active in spreading awareness about CF through her blog and social media — “The Living, Breathing Wendy.” She also helps through the CF Foundation where she can, both nationally and locally.
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Social media is a strange and fickle web of predetermined, or accidental, personas. I used to be very active on social media, with the intent of spreading awareness of cystic fibrosis. It was easy to do because it was taking over my life. There was never a shortage of doctors’…
When I was in high school, an informational book about cystic fibrosis made its way to me. As I read through it, I found a section on mental health. It stated something along the lines of, “Although CF carries a lot of emotional baggage, depression is not a common comorbidity.”…
In my last column, I addressed feelings I had about being unable to perform at the same professional caliber as my peers. One of the ways I have mentally adapted is realizing this: The “five-year plan” wasn’t created for the chronically ill. This “five-year” concept, a popular long-term…
Dear Chronically Ill Professional, You are enough. It’s easy to look around and compare yourself to your peers. Maybe you didn’t get that promotion because you were sitting in doctors’ appointments instead of working overtime. Perhaps you aren’t living that “hustle” lifestyle because you need to slow down and…
A lot is happening in the world right now. We are in the midst of a pandemic and a civic revolution. I believe it is important to use my voice to start a conversation about diversity, specifically in our small community. It might be a bumpy conversation, but it needs…
COVID-19 has uprooted my life in many ways. Some are obvious, some are not. Like many people with disabilities, I have been in isolation since the outbreak began. Shortly after, an interesting topic came up among service dog handlers: Is it safe to use service dogs during this…
I am drained. My current situation astonishes me. The United States healthcare system must change. Over the past month, I’ve dealt with some severe and unusual health insurance issues. Before I continue, I want to make it clear that this is not an attack on our healthcare workers or any…
Self-isolation has caused an unexpected sort of peace to my daily life. Before you call me crazy, hear me out. I am usually constantly busy. I work several jobs, partake in countless hobbies, and fill silence with an active social life. I think that is the case for many young…
The excitement and flurry around the new combination therapy Trikafta (elexacaftor/tezacaftor/ivacaftor) brought a lot of hope to the CF community. This is a good thing. However, many complex emotions are not being addressed. Everyone expects a flood of challenging emotions when one transitions from healthy to dying, but what…
My head has been spinning with how rapidly the effects from COVID-19 have engulfed the world. It is a great reminder from Mother Nature that humans are not invincible, despite what it may seem at times. I always have had two sides to my world: the businesswoman and the…
I did not trust the process. I was impatient. A common theme with technological advancements is the expectation of instantaneous results. How many times have you heard someone tell you to “Just give it time”? That’s easier said than done. We started walking to raise…
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