CFLF Blog

Laughing at the Sky

I recently read a book that moved me in so many ways. It was one of those rare ones that hooked me on page one and held me throughout. Part of the reason was the quote that was included at the onset and reinforced throughout:

“When you realize how perfect everything is, you will tilt your head back and laugh at the sky.”

College and Career: Making it work with Cystic Fibrosis

Being a college graduate with Cystic Fibrosis (CF) and diabetes truly is one of my proudest accomplishments. I know the opportunity isn’t always a given and despite yearly hospitalizations and a very ugly attendance record, I somehow still managed to graduate within four years.

My 2018 Anti Resolutions (Part 1 of 6)

Clock In Snow

Each year, the turn of the calendar brings the cultural practice of creating “New Year’s Resolutions” in striving to improve our self, our lives, our health, or our finances with some level of commitment in which we are the judge of pass or fail. This practice is not something I really subscribe to. My life in both surviving and thriving with cystic fibrosis (CF) has entailed a willingness to go against the grain in not being limited or defined by perceptions or expectations of science, statistics, or cultural belief about me or my CF.

The Heart(h) of Christmas

I don’t want a lot for Christmas
There is just one thing I need
I don’t care about the presents
Underneath the Christmas tree
I just want you for my own
More than you could ever know
Make my wish come true
All I want for Christmas is YOU

Peppermint Hot Chocolate

Can you guys believe Christmas is only a week away?! Anyone else trying to finish up shopping for loved ones and wrapping all the gifts? Every year I say I’m going to start early, but every year I’m hustling at the last minute to get it all done.

Anyways, one of my favorite things is to sip on peppermint hot chocolate while listening to Christmas music and wrapping gifts. Peppermint and chocolate are one of my favorite flavor combinations and one of my favorite things about the holidays.

Alkaline Water and My Cystic Fibrosis

Water drop

Over the past few months, I have become increasingly familiar with drinking alkaline water an the potential benefits for CF.  I want to expressly note that the following article is NOT MEDICAL ADVICE, and only reflects my own personal thoughts and experiences.

Am I In Pain?

I was going to write a quick Instagram post on this feeling, but then I realized that it may be a little more deep-seeded than a quick blurb. I went to a show this weekend. Not a huge show. Just a rinky-dink bar show. A passion of mine is supporting the local music scene, and what better way than to attend shows. Also, a dear friend of mine that I do not see nearly enough invited me.

Why Giving Matters

Giving Tuesday Header

“We make a living by what we get. We make a life by what we give.”

 -Winston S. Churchill

The last few months of the year make up what is referred to as the “Giving Season” for the nonprofit world. As the holidays approach, people often give more generously.

Community Forever

Earlier this month, I had the opportunity to attend the North American Cystic Fibrosis Conference here in Indianapolis. While I knew that I would learn about the latest and greatest in CF management, I was unprepared for the second, more meaningful gift that this experience gave to me:

The gift of community.

Gratitude

I always enjoy the autumn season and this year was no exception. I rebounded from a hospitalization in August for a lung infection triggered by a flu virus. I spent several nights in the hospital and then 10 days on I.V. antibiotics at home. This bout knocked me hard and I found out that even with Kalydeco/Ivacaftor I am not Invincible! It had been 2 1/2 years with no hospitalizations. I am grateful to the care team that got me healthy.

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