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CF Awareness Month

CF Awareness Month

The month of May is nationally recognized as Cystic Fibrosis Awareness Month. It is important to not only wave the banner of cystic fibrosis (CF) in reminding people about the genetic disease that causes chronic congestion, lung infections and digestive compromise, but to also understand why awareness is important for those of us living with cystic fibrosis.

Chumbawamba, Purple Cats, and Becoming a Warrior

Does anyone remember that ridiculously catchy song from the summer of 1997 by the one-hit-wonder Chumbawamba?

“I get knocked down, but I get up again. You’re never gonna keep me down…”

Last night, as I was climbing into bed, that song appeared in my head out of nowhere. And I thought to myself, “When did my life start feeling like a Chumbawamba song?” I should clarify. Not the parts of the song that talk about whiskey and vodka, but the above refrain that champions resilience after being knocked down.

Bone Broth

I just posted a new blog over on my website sharing some things I am doing to help heal from the sinus surgery I had a few weeks ago. One of the things I shared is that I have been drinking bone broth daily, sometimes two or three times per day.

Surviving 65 Roses

A blog written simply for the fulfillment of thoughts and rambling of a person who ended up loving the world in ways it could never begin to love her back. Are we ever ready for anything that happens within our lives? Absolutely not. Nothing could’ve prepared me to fight for my life. The girl before me, the person I was, passed. Her hands were gripping the bedside railing; her eyes cluing in on the steady decline of numbers on the screen. She let go. And soon enough, the birth of a new life rose from the cracks.

Strength In Numbers: The 100th blog!

This week will mark a milestone for the CFLF, as we publish our 100th blog article! In wanting to do something special to celebrate our 100th I started reading through some of the 99 previous blog posts written in the last two years. It reminded me of why I wanted to publish writing each week by people with CF and people affected by CF. More than anything, I wanted the CF community to feel connected to one another.

5 Reasons to Get Away with CF

Brian Marissa Nicole and Cami

I recently returned from my first vacation in two years.  Just weeks before the trip, I unfortunately triggered a severe back spasm, which was a big disappointment since having great success with a double surgery last June to correct a 20-year-old injury.  The stress and frustration of life seemed to again pile up and land square in the middle of my back, only making things extremely painful. 

Just Breathe

Just Breathe – this seems to be the anthem for the entire Cystic Fibrosis community. As I have gotten older I have adopted this as a personal mantra. There is no doubt that life with Cystic Fibrosis is challenging at best; CF is physically and emotionally exhausting. 

To The Parents Who Just Found Out Their Baby Has Cystic Fibrosis

I was scrolling through social media last night when a photo of a beautiful baby caught my attention. She had impossibly large blue eyes that stared deeply into the camera. She was gorgeous. The post was in a large online parenting group and it was accompanied by a caption written by the baby’s mother about how devastated she was. She had just been told that her baby has Cystic Fibrosis. She wondered what kind of life her daughter could expect to have now that she was diagnosed with this horrible disease.

The Light at the End of the Tunnel

I lived in a yurt once. Actually it was a small round cabin with a yurt on top of it. It wasn’t the kind of yurt you see in pictures that’s big and full of light and looks nicer than most homes. It was quirky and small at 16 feet from wall to wall, only a few hundred square feet total. I lived there with my partner (Nick) at the time, and his young daughter. 

The Five Stages of Becoming a Friend to Someone with Cystic Fibrosis

Stage One: Naiveté

I first met Erin fourteen years ago, the start of my sophomore year at the University of Maine at Farmington. Erin had taken a year off before college, so we were the same age even though we were a year apart academically. Everyone in my group of friends was curious to meet our friend Aliza’s newly assigned roommate, and soon after we were all introduced, I was sent back by one of our male friends – who had quickly developed a crush - to do some intel.

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