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Spirituality and My Cystic Fibrosis

Mt. Agung at twilight

I was halfway around the world in Bali, staying in a remote resort in the mountains, with a cold that had gone to my chest and without electricity for my therapy vest. I was nervous the sickness would progress into a lung infection, and I would need to be flown home in an emergency.  

Find Your Escape

Daughter. Sister. Aunt. Teacher. Traveler. Musician. Friend. Dreamer. Artist. Patient.

We all play various roles in our lives that make up our unique identities. Some of our roles overlap at certain times in our lives, enhancing the other roles; sometimes one of our roles might limit our ability to play another role to the fullest.

Connect with Nature

It is Spring and a great time to get outdoors. The drought years in California are over and there are more poppies and wildflowers than we have seen in many years. I am grateful to be healthy and enjoy walking, golfing and swimming laps. I have been fortunate to benefit from the Vertex drug Kalydeco (Ivacaftor) for over two years. I haven’t needed to head to the hospital since taking this drug.

Lesson number 374, 767, 5 & 127

There’s so many lessons we knowingly or unknowingly step into everyday. A break would be nice, but that would be too easy! In this past month I’ve gotten to learn a lot of lessons of learning to live with cystic fibrosis. I’m 31 so I’m not kidding, they never end!!

“Everything that has happened to you is either an opportunity to grow or an obstacle to prevent you from growing. You get to choose.” –Wayne Dyer

Coconut Cashew Energy Balls

I don’t know about you, but my snack game is strong. I wanted to share one of my favorite snacks with you guys. They are nutrient dense, high fat, high calorie, and delicious! Plus they are super easy to make.

Coconut Cashew Energy Balls

I Will Paint Her In Color

Last month, I had the opportunity to share my family’s journey with cystic fibrosis on our local hospital’s Radiothon. I went to the radio station, sat in front of a ridiculously huge microphone, and answered several questions about my daughter’s diagnosis and the impact it’s had on our family.     

Live, Laugh, and Keep Laughing

As CF patients, we are often told by our healthcare team that we need to do certain things to keep ourselves healthy and live longer: “You need to take your pills, you need to do your breathing treatments, you need to do your airway clearance, you need to eat more calories”. Sound familiar? I thought as much. While all these things are necessary for every CF patient to do, It’s my belief that there is a medicine that everyone needs, CF patient or not, that is debatably the most important of them all.

Why I leave my “CF Card” at home

In November, my husband, Scott, and I FINALLY moved into the house we’d been building for the last year. Nobody likes moving, but we took comfort in the fact that it was our last move. Ever. So moving all of our stuff from storage into the new house felt exciting (and, of course, a little stressful).

momma always told me there'd be days like these.

I did one of those mom moves this morning — the one where absolute chaos is going on around her and all senses are over-stimulated and if there were outsiders, they would just see a swirling cloud of a loud mess.

But in the center, I just stood.

Phone ringing. Message after message, who do we owe more? But one call that particularly stands out is from the specialty pharmacy.

The Power of Choice

Brian biking Key Biscayne

For those of us who live with cystic fibrosis (CF) in our lives, whether as the person with CF, or as a family member, friend or loved one close to someone with CF, having CF is not something we have a choice about.  It is a fact that CF is either a part of our life, or not. This is based on genetics from the moment of conception.  

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