CFLF Blog

In the Blink of an Eye

It has been a LONG time since I’ve written one of these blogs. The last year or so has gone by so fast that it literally feels like I blinked my eyes and when I opened them everything had changed. The biggest things is that I became a mom in November 2017, to a beautiful boy. Seven weeks later I graduated from my master’s degree program. And sometime between then and now I’ve been part of a clinical trial for a new CF medication that to call life changing would be an understatement.

The Unexpected Lesson

There are moments in life that have the opportunity to define you, if you let them. For me, there is one in particular that I have carried, ingrained in my being so deep that I thought it was impossible to let it go. This moment occurred while I was in grade school when a teacher assigned me an essay on cystic fibrosis. At the time, I didn’t think much of the assignment. When I began my research, I found I had an expiration date. I found that my age expectancy was under 20 years. My life froze, my heart broke, and I filled with fear.

Learning to Paint Her in Color

I worked in healthcare for twelve years and was always drawn to the emotional parts of managing chronic illness. I partnered with doctors and nurses to help them address their patients as people first. I helped people living with chronic illness fit their daily self-care into their already busy lives.

I really thought I got it.

Healthy Snacks on the Go

In a previous post for the CFLF, Increasing Calories With Nutrient Dense Foods, I discussed the importance of whole food nutrition when it comes to increasing calories, especially at meal times. For this post, I’d like to focus on ways to get calories while exercising and on-the-go.

New Eyes

Awaken to the rhythmic tune of my alarm. Eyes still closed. I hear the birds chirping outside. 5am. Stretch my arms over my head. Take a slow, deep breath. Inhale. Exhale. Ahhhhh. Rinse. Repeat. Excitement washes over me and I feel a smile spread across my face…

It’s no ordinary day. That’s no ordinary moment. Nothing about the life I lead is ordinary…

A Ray of Hope

Everyday, for about an hour every morning and every evening, I’ve been attached to an airway clearance machine. Its nothing new to me. It’s as much of a routine as brushing my teeth at the beginning and end of each day.

Growing up I hated doing treatments. My brother and I often hid in our basement from our parents to try and get out of doing them. Due to health insurance reasons most CF families only had one machine so we would take turns and wait for the other to finish so neither of us would be alone.

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.

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