CFLF Blog

Blog banner 2021

 

Keeping Your Chin Up

Keeping Your Chin Up

I always found the expression “Keep your chin up!” to be a simple encouragement in times of difficulty, but recently I have realized that the position of my chin makes all the difference in my physical and mental well-being. Recently swimming again, I noticed that looking straight down in cloudy waters was a coping mechanism for maintaining my orientation and direction while blocking out the scary and unknown surroundings. But keeping my chin down also presented its own threats.

Our Pets getting us Through Quarantine

During the quarantine I found myself heavily relying on the companionship of my dog "Peanut Butter" AKA "Peanut." Having Cystic Fibrosis during this pandemic has been one of the scariest times of my life. The uncertainty of possibly catching COVID-19 weighed heavily on me everyday. When things first started getting crazy, I was still working as a delivery person. I would keep safe by wearing my mask, gloves, and not having any contact during deliveries, but here was still that little fear of getting sick. I eventually stopped working because it was not worth the risk.

The Warrior Across From Me

No one recognizes and understands the risk of undergoing a procedure that could save your life more than someone who has been living with a condition that could, and will, take your life.

The IHOP on Veterans Boulevard provided a nice setting and a comfortable place to decompress. In the middle of the eatery famous for its chicken and syrup. In the middle of the country.

Mindful Mornings

The days are getting shorter again this time of year and I find that keeping on a protected routine especially in the morning is something that can help us all to adjust to the fall and winter coming in a healthier way. So as this time is approaching, I encourage you to contemplate what an ideal morning looks like to you. What sort of things make you feel good about the day ahead? Do you currently have a morning routine? Do you wake up at a consistent time? What is currently working? What is lacking or not working?

How the Pandemic is Working in Our Favor

In a world that's disconnected by a pandemic, we have to find the positives when we can. It’s been a challenging year of uncertainty, change, and underlying fear. This has especially been the case in the CF community as we are more at risk and immune-compromised. We have all felt this and been affected on a deep level.

Finding the time and finding the good in quarantine

My days of quarantine came to an end about two weeks ago. I’m an instructor at a college in the Twin Cities and we are back on campus as our students settle into their new normal; masks, sanitizing stations as far as the eye can see and an awkward distance between staff, friends, and classmates.

Conversation and a burger just off of I-85

As defined by Marriam-Webster, conversation is an oral exchange of sentiments, observations, opinions, or ideas. When two people with Cystic Fibrosis get together over lunch, formal definitions are unnecessary.

Just off of I-85, I turned into the designated place in Valley, Alabama, a spot known for its golden crispy fries and all-day breakfast. But that afternoon, it was the place where two CFers who have been through a lot, were set to share their stories of battles with this chronic, lifelong ailment, that few truly understand.

Answering Our Kids' Hard Questions

“I’m all mixed up!” my daughter exclaims. Her arms shoot upward toward the mesh of the tent. The stars shine down, their tiny lights glowing more fervently by the minute.

We are camping in the stillness of our backyard, and my daughter is eager for clarification.

“What does God look like?”

My response is feeble at best.

Grace in a Time of Change

Treatments for cystic fibrosis have come a long long way in my 35 years. It’s kind of mindblowing to think about all the advancements I’ve seen. When I was diagnosed with CF at two weeks old, the doctor told my parents that the life expectancy wasn’t great, but to stay hopeful because a lot of research and progress was being made. I don’t think that doctor knew just how right she was!

The Spirit of Elvis and Cystic Fibrosis

It was a new place and the end of a long road trip. The final stop of the trip that I had, only days ago, and hundreds of miles away, met both a Cystic Fibrosis Warrior and the family of a fallen Cystic Fibrosis Warrior. Indeed, the family of a Cystic Fibrosis Angel

Pages

Support CFLF