First, Waiting to get Better, Now Waiting for Fun!

I just wanted to write a quick update because things have been a little busy around here and you know how that gets..

After my belly issues at the beginning of March, I’ve been dealing with infection on and off and try to stay off antibiotics as long as I could. That was until about two weeks ago.

I had my regular CF clinic visit, ended my PFT tests, and my numbers were pretty good. They were pretty much exactly the same as they were last time… Not improved all the way back from everything I lost after my experiment of taking the new drug for CF, but it hadn’t gone down.

So when I came home a couple of hours later and I had a fever of 100.1, thought that said my streak is over.For seven weeks, I had experienced several episodes where my infections are flaring up and I had several days of strong symptoms, but you’re doing extra vest treatments and lots of rest and vitamins, and lots of fluids, I actually made it through without loading antibiotics. My immune system *sometimes* does work!

 

This machine measures how much air I can blow out in 1 second…and a few other variables…that help define my current acute and chronic lung disease.

 

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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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