Please Support our Fundraiser for Cystic Fibrosis!

It’s that time of year again! We’re walking to raise funds and awareness at the Cystic Fibrosis Foundation Great Strides event!

This is our fourth year participating in Great Strides! Here are our totals for the previous three years:

2013: $2,575
2014: $2,310
2015: $2,935

The past two years, we had held our own additional fundraiser, Darts for CF, that helped raise our totals, but we aren’t able to do so this spring. So our only fundraising efforts through the Great Strides event!

We hope to raise at least $1000 this year, so I’m reaching out to everyone!

CLICK HERE TO DONATE OR JOIN OUR TEAM!

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College and Cystic Fibrosis: Who/ What/ When/ How/ Why to Tell People about your CF

I came across some amazing news recently – nearly half of all CF patients are older than 18.

Courtesy of the Cystic Fibrosis Foundation https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

Courtesy of the Cystic Fibrosis Foundation

That means the patient population is growing up!! How amazing is that? It means so many things, and for some of us, it means:

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No matter where you are in your self-identity journey, it’s never easy to know when to “come out” with your CF. And now that you’re going to college, you wonder, who do I tell? Who should I tell? Who do I need to tell? Who needs to know, really? It’s nobody’s business, right?

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Keeping Organized with Cystic Fibrosis

Having Cystic Fibrosis almost demands some level of organization.

When my health changed in my early 20s, I only had a handful of medications. Now, my list runs between 15-20 different medications, many of which I have to take daily (or more often). I have to manage daily doses, maintain an inventory so that I know when to refill medications, and keep it all accessible and organized. Continue reading

Welcome to the new TheraPink!

We’ve updated the look and feel of TheraPink!

I thought it would be cute to use a photo of my little cat, Molly, looking out the window in Spring time, as our featured image. Out the window, you can see our Kwanzaa Cherry tree in full bloom. It’s something we look forward to, every Spring.

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We planted this tree about a year after we moved in, and just like us and our life with Cystic Fibrosis, it’s weathered many storms. Literally, it’s stood strong through hurricanes, blizzards, and nor’easters – everything that nature has thrown its way. It may bend and crack a little, but it’s still standing.

Just like me.

Kids with Cystic Fibrosis: Making Hospital Stays Better Experiences

Hospitalizations. Scary, not fun, and full of strangers doing painful things to you.

Typically, most kids get through childhood having spent only a couple of nights in a hospital. Perhaps they had their tonsils out and stayed overnight for observation, or maybe had the flu and needed fluids and monitoring for a few days. It’s probably something they (and their parents) will remember for many years and even decades later, because it was likely a singly traumatic or painful experience.

If you have a child with Cystic Fibrosis, you might have to bring him or her to the hospital much more frequently – perhaps for a “tune up” – a two-week course of IV antibiotics, several times a year. Even if they’re “lucky” enough to only have to come in “only” once a year, it’s still a long period of time to have to endure all that comes with being a patient.

Wouldn’t it be great if your child could look back on a 2-week stay and remember it through a different lens?

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TheraPink Series: Kids with Cystic Fibrosis: Kids, Cystic Fibrosis, and Food

When the words “Cystic Fibrosis” come up, the first thing that many people think about is a thin child laying in a hospital bed.

Indeed, I was very thin, always the shortest kid in my class, and despite a voracious appetite in between infections, just never fell anywhere within “normal” on those growth charts.

Research has proven that having a healthy BMI (body mass index) helps our lungs stay healthier overall. However, when we get sick, we can lose weight very quickly, which shoves us into a vicious cycle. Continue reading