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Pace It Like A Swim Practice!

Something I am still in the process of learning is that Cystic Fibrosis does not define me. I was diagnosed with CF at birth, and it is a big part of who I am. It has shaped the way I live and the way I see the world. CF is a big part of me...but it isn’t ALL of me.

A Day in the Life of CF: Episode 1 by Vicki Thompson (Re-share from 2015)

From Erin: This week we decided to publish one of our favorite articles from the CFLF blog archive. We've been thinking a lot about our good friend, and former blog contributor, Vicki Thompson, who wrote the following piece in 2015. It's been three years since she passed away (from complications of CF) but her energy and joy is felt throughout all of her writing. This one especially as we read AND get to watch a day in her life and remember her radiance, determination, and strength that we all admired and continue to be inspired by.

 

A Warrior and His Protector

Life begins with uncertainty. Who will you become? What will you become? Why will you become it?

You need a champion. You need an advocate. You need a protector.

One evening at an eatery in North Rock, Kansas, I found these traits in Cystic Fibrosis Warrior mother, Terri Mathieu-Erker, and her nearly two-year-old CF Warrior, Andrew, sitting at double tables, just to the right of the entrance.

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.

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