CFLF Blog

Never Downplay the Importance of Your Care team

My transition to adult care was a rocky experience that only the time spent with my pediatric team could prepare me for. I spent 10 years with my pediatric team and at nearly 22 years old, my pulmonologist was nudging me to move onto adult care. Begrudgingly, I accepted the reality that I couldn’t live my years out within pediatric care, and with a broken heart I began seeing the adult clinic in my city.

CF Awareness Month

The month of May is recognized as National Cystic Fibrosis Awareness Month. It is also the month of my birthday. This overlap has always represented something very special, yet ironic to me because for a long time cystic fibrosis (CF) was believed to be the likely cause of my end. I distinctly remember at age 13, when the CF gene was first fully mapped and a cure would not be far off, that I committed to myself to stay healthy enough for long enough to see that cure in my lifetime.

A Blueprint For Tackling The Transplant Process

April is Donate Life month. Raising awareness for organ donation has become one of my new life goals. Before this year, it was just another month to me. Yes, I knew about donate life. No, it didn’t affect me personally.

My mantra for today: I am happy, I am healthy, I am ALIVE, I am enough.

In a world filled with deadlines, important dates, schedules, and doctors’ appointments it’s important to find the humor in it all. I never know what a day will look like living with Cystic Fibrosis and I see it as an adventure.

Story of a CF Spouse: Coping with Loss

Shortly after my fiancée, Ashley, told me about her cystic fibrosis, we were engaged. Months later, she passed away, leaving me to figure out what I could have done differently and how to cope.

It's Our Choice

I know CFLF readers have come to expect me to blog about nutrition or share a new recipe, and that’s what I had planned for this post as well, until the last minute! Don’t fret, I promise I’ll be back to sharing recipes in future posts. 

Preparing for Take-Off: Tips for traveling with little ones with CF

Today is the first day of Spring, and if you’re like me, you’ve got three little words on your brain. Spring Break, baby! 

In the days of old, that cheer would have likely been punctuated with a pint in hand and thoughts of a possible tattoo. But you’re a bit past that now. You’re in your (ahem) late thirties, you have two kids, and your Spring Break plans entail one overnight stay at a salt water pool in Southern Indiana. Can I get a woot woot?!

Laugh often, it clears the lungs

I believe there can be humor in any situation, even in your lowest moments. It's one of the most cliché sayings around, that "laughter is the best medicine" and maybe it's more of a coping mechanism than anything but I found comedy to be strangely therapeutic when it comes to living with Cystic Fibrosis and diabetes.

Luck of the Irish

As St. Patrick’s Day nears I remember my Irish/English Heritage. The shamrock has been used as a symbol of Ireland since the 18th century and is registered as a trademark by the Government of Ireland. Saint Patrick, Ireland's patron saint is said to have used it as a metaphor for the Christian Holy Trinity.

The Gift of Presence - 2018 Anti-Resolutions (Part 2 of 6)

Presence

In my last CFLF Blog post, I began a series focussed on my 'anti-resolutions' for 2018 with the hopes of sharing a different perspective on the widely accepted tradition of making promises to ourself about how we will improve our life in the coming year. For me, these comittments would have fizzled out by this time of year (only two months later) and I would struggle to even remember what my big New Years Resolutions even were, let alone actually keep to them. 

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