CFLF Blog

Swimming Through CF

Barbara swimming

Here I am at 68 years old, living with cystic fibrosis (CF) and writing a piece for a blog! It is a long story; but were it not for my regular lap swimming for 40 years, I wouldn’t be alive, healthy, and keyboarding for the CFLF Blog. My CF was not diagnosed until I was 64 years old; I knew I was a carrier, as I lost a sister to CF in 1971 when she was 21 years old. As I aged I had lots of lung problems and at some point doctors told me I was likely a carrier with symptoms.

Depression and Cystic Fibrosis

When I have a lung exacerbation and become physically sick, I become equally sick mentally. This state of disturbance blankets my outwardly copacetic life. The dancey cadence of my voice becomes lethargic. The spark of life in my eyes is only visible under a haze. Though a stranger would never notice, depression surrounds me. When everything seems to be going swimmingly, I run into a dam. But thats cystic fibrosis, and for some suffered (one in three) this is topped with depression.

Breathing in the Dark

I was admitted into the hospital six days ago with my lung function being the lowest it’s ever been in my life. I feel like I've been here for almost a month.  Anyone who's ever spent a lot of time in the hospital knows that five hospital days feels closer to 30 non-hospital days.  There are times in here when an hour literally feels like an entire day.

Workout. Cough. Repeat.

Treadmill Header

It has been quite a week for us in the Cystic Fibrosis community. With only 28,000 patients in the United States, our collective voices were the "shot heard round the world".  And..with all respect...it was about time!

Many Hands Make Light Work

My mom always would tell us “Many hands make light work” when she was trying to convince us to help with gardening, or house chores, or something we didn’t necessarily want to do.  However, it was true.  And I found the experience would even at times become enjoyable, working together to get the job done. 

Teamwork, whether working at a chore, on a project, or at a sport is typically a positive experience, and most often results in outcomes and accomplishments greater than what would be possible by going it alone.

Coughing in (Un)Comfortable Quiet

Picture this, you’re in a 60 minute Restorative Yoga class, in an enclosed room surrounded by many fellow yogis. You’re set up with your feet positioned above your head with the aid of a bolster over some blocks. Your head is slightly lifted by a soft tri-folded blanket. Arms spread wide, palms facing to the ceiling. Arguably one of the most comfortable positions of your stressfully busy day.

(This image is a recreation of the position aforementioned during a hospital stay)

Listening Carefully

I've been thinking a lot about time lately.  Like a small victory, another winter in Vermont has finally passed and signs of summer are starting to settle in.  It feels good to know the months ahead will be warm, and full, and, unfortunately, much too fast.  Why is it that time goes so slow during the winter and so unbelievably fast in the summer?  I've been watching mybest friend’s toddler, my godson, Wolfy, every week.  He's smart and compassionate and full of an energy I can't even remember ever possessing.  I love how time slows down when I'm with him though.

A Workout In The Life Of...

The term “athlete” was derived from the Ancient Greeks, initially to describe an event based on physical feats.  According to wikipedia, from the Greek word athlētēs means “combatant in public games”, Athlon means "prize", and athlos means “competition”.

The Median

Last week I turned 38 years old.  This was one of the many landmarks in my growing older with CF where I was crossing what was once the median life expectancy for people living with CF.  

Ever since I was young enough to remember learning that there was such a thing as a median for the statistical average of CF lifespan, I wanted to surpass it.  However, every time I reached that number, it had again risen.  Believe me, NO COMPLAINTS HERE!!  But it was the carrot on the stick that has continued to dangle not far in front of me, as an ongoing goal.  

Meet the Authors

Welcome to the CFLF blog written and posted by four adults living with Cysitc Fibrosis.  The intention of this blog is to share with the greater CF community (and beyond) some of their stories and tips for living and thriving with CF.  The authors of this blog hope to share firsthand their unique experiences of navigating their way to health and wellness.  Although none of them are “experts” in this field, each of them is an expert in their own CF care and hopes to share with others their interpretation of what it takes to live a longer and stronger CF life.

 

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