CFLF Blog

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Making A List

The holiday season is upon us and we are all busy with holiday parties, gift shopping, and decorating our homes. Keeping up with CF treatments can be more challenging with a hectic schedule.  As an older CF adult I am coming upon my 69th Christmas.  I have been sick for some Christmas holidays but somehow rallied through them and made it to the next year.  

What Is It Like To Be A Partner Of Someone With CF?

Marissa Brian at Beach

I met my girlfriend, Marissa, online in early 2013.  There was a certain unique and immediate comfort in communicating through email, chat and eventually phone right from the beginning.  Before we even met for the first time in person our lives became intimately connected.  After our first attempt at getting together to meet in person got postponed, I had to leave to go to New Jersey for the death of my second oldest brother.

Laying The Groundwork

Four weeks ago while recovering from sinus surgery in the hospital, the foundation for my new house was being poured. Almost a year ago my fiancé, Scott, and I decided we wanted to build a house. My parents offered us some land on their property and we of course took them up on it. After LOTS and LOTS of paperwork we finally got a construction loan to build the house. The plan is to have the house up and closed in before the first big snow so we can continue working on it through the winter. So far we’ve been lucky with the weather and the house is almost closed in.

A Half Marathon of Tips to Help You Run

I was always someone who couldn’t run. I couldn’t even finish the track mile they make you complete in middle school, which I’m convinced the administration only facilitates to embarrass people like me. Maybe CF was partly to blame for my lack of running skill, but so was my determination. I was not a runner, did not want to be a runner, and had no intention of changing this. So as an adult, changing my mindset and making a decision to start a running regimen was not easy. But I knew I needed to exercise for my health, both mental and physical.

Cough your heart out. And other words of advice from an almost 30-year-old with CF.

I am almost 30. And it’s a (surprise) celebration, as you can see! I’ve learned a lot of lessons along the way and still have a lot more to learn. In celebration I wrote down 30 pieces of advice for living with cystic fibrosis.

1. Cough your heart out. Do it, cough. Let it be. You’ll feel so much better and begin to care so much less about what others think around you.

The Fundamentals

Golf. It is my new obsession, or shall we say object of my attention and affection. I joke that I am like the golf channel: All golf - all the time. This isn't completely true as I am also a swim coach, a Cystic fibrosis patient and transplant recipient. However, lately my mind and body are focused on golf.

Hydration

Let’s talk about proper hydration shall we? Did you know it’s just as easy to become hydrated during the winter as it is the summer? While we may not be sweating as much we are still losing water through our breathing. And in many parts of the world winters can be very harsh and dry.


How do you know if you’re dehydrated? Here is a list of some early and mature signs of dehydration:

How do you CF? Proactive vs. Reactive

Brian Cycling NH

I do not think I am alone when I admit that I get somewhat pissed off when family or friends, medical providers, science or statistics tells me what I supposedly can or can not do in regards to my CF.  I remember very clearly, in 2006 when I had decided to cycle over 2,000 miles from Canada to Key West, my father saying “You can’t do that!  Why would you do such a grueling thing?”  My only response was, “Keep telling me that I can’t, and that’s all the more reason I will.”

 

HOODOOS that Inspire

Yearning to get outdoors and challenge my improved lung function, my husband and I headed east from Ventura, CA in early September to visit southern Utah’s National Parks and Monuments. The state has five National Parks, six National Monuments and several National Forests. The landscape or should I say rockscape offers spectacular scenery, geological history and abundant outdoor recreation opportunities.

Thriving, Not Just Surviving

I have friends who can crawl out of bed and be ready to walk out the door just minutes later, who go to the doctor maybe once a year, who never get sick, and who wouldn’t know a piece of medical equipment if it walked up to them on the street.  

And I have to admit: sometimes I’m jealous of them. 

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