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Increasing Calories with Nutritionally Dense Foods

My daughter with CF struggled with weight gain for the first two years of her life. She’s pancreas sufficient yet seemed to teeter around the 5th – 10th percentile for her height to weight ratio for much of her infancy and toddlerhood. How much of the inadequacy resulted from CF and how much from genetic predisposition? Like most CF families, we’ll never know. Regardless, we were given ample advice on how to bulk up her calories in order to promote better weight gain.

The Value of Awareness

FL Capitol Lighting 2017

Imagine yourself breathing through a snorkel with some water trapped in the bottom of it. Every time you breathe in, it gurgles, and you try to control every inhalation so you do not choke and start coughing. This is how I explain in one sentence to someone who has never heard of cystic fibrosis (CF), what it feels like to live with the lung disease. But as a person living with CF, I ask "What is the value of public awareness of cystic fibrosis, and how is my life and the life of 70,000 others directly impacted on the daily level by public awareness efforts?" 

Finding Time to Prioritize Healthy Meals for a Family

Managing chronic illness requires a large investment of energy that can often overextend our resources. One of such resources that I have found to be particularly limiting is time – time spent performing treatments and therapies, cleaning and sterilizing equipment, doctor’s visits, and my personal favorite time sink – phone calls to insurance companies, pharmacies, and physicians. But as we all know, disease management doesn’t stop with the medical logistics, it extends into a self-care regimen that includes adequate sleep, stress management, exercise, and preparing healthy meals.

Yoga + CF

I still remember the very first time I tried yoga. I hated it. Which is not what most people, who know me now, expect me to say, but it’s the truth. It took me some time before I really started to dig yoga. Before I truly just let go of expectations and preconceived notions. That’s when the magic started to happen. To this day I am still so grateful that yoga somehow kept finding its way into my life, even when I was resisting it most.

Easy Meals that Taste Like Home

Have you perused the cookbook selection on Amazon lately? I can hardly keep up. Mediterranean Diet. Paleo Diet. Ketogenic Diet. Vegan Diet. Raw Food Diet. Am I missing any? Probably. But you know the diet I hardly ever – correction, NEVER – come across online? The diet intended to help impressionable readers / impulsive cart adders gain weight. Yes. Gain weight.

No, the diet isn’t for me. You’re too kind…and perhaps in need of corrective lenses. 

Cultivating Healthy Eating Habits in Our Children

Disclaimer: The following recommendations are not meant to be treated as medical advice. Contact your CF team’s dietician and work closely with medical professionals to implement a specific feeding intervention strategy for your family.

Why Your Donation Matters

I was 21 when I received my first grant from the CFLF, and it simply changed the outcome of my life. In my younger years I suffered from the mental hardships that cystic fibrosis patients are known to endure. I was lost and felt like I had no calling in life except to be sick. It was a terrible way to live. But one day I decided to take a chance and attend a yoga class, and EVERYTHING clicked. I knew in that moment that I had to dedicate my life to a breath-based practice and to learn how to breathe and to find meaning in the chaos. 

Beauty in the Struggle

“Roses are red. Violets are blue. Things may seem tough but you’ll get through.” This poem was written in crayon and framed above the computer in room where I did my pulmonary function tests (PFTs) growing up. I visited this room every 3 months from ages 5 to 19. I remember thinking those words over and over in my head as a kid, in hopes they’d calm me down and better my results. Looking back I think it’s pretty clear that I had PFT anxiety.

Ventura Sunset - 2018

As the sun set on 2018, I reflected on what a good year it had been. I was in good health for the year with no hospitalizations. Here I am at seventy-two (72) years old and maintaining my active lifestyle: swimming laps, golfing, regular walking and yoga. It is not always easy to be compliant with daily treatments for CF but I am consistent and I am still here. I have had the benefit of Vertex, Kalydeco (Ivacaftor) for three years and what a difference it has made.

Lessons In CF Related Arthritis

We all know having CF is hard, for many different reasons. Physically, one of the most difficult aspects of having CF for me is joint pain.

It’s been more difficult than the two major back surgeries I had and even more intense the time I had to have the hole for me feeding tube reopened with no anesthetic, nothing to numb the area, and nothing for the pain. But that’s a story for another day, a rather interesting and wild one!

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