Madonna!!

It is so great to see so many amazing people and celebrities support the Cystic Fibrosis Foundation with the #TakeABreathForCF campaign to raise funds and awareness for CF!! Of course there is only ONE celebrity that makes my world go round..... the ONE and ONLY Madonna. Madonna make my birthday one to remember and Take a Breath for CF! 

I sent Madonna this video back in 2015 when she did a question and answer on Instagram. 

https://instagram.com/p/BF7SMvJnAm7/

I had 15 sec or less to record this video and ask her anything....So much pressure!!!  So, naturally I asked her something I think is very important and near and dear to my heart. She didn't answer my question.... maybe because there were thousands of other videos to scroll through. Perhaps maybe she even skipped it because the answer is more than likely yes, or maybe because it's something most people don't even really think twice about since it usually comes with such ease. But if you really truly think about each and every breath you take, I promise you, you will treat each breath as a gift... and you will Love to Breathe®. 

May is Cystic Fibrosis Month and it just so happens to be my bday month....I can't believe I am 37, May really is A•MAY•ZING!! 

So for the rest of this month I challenge you to really think about every breath you take... What would your answer to my question be? I mean, I know it would probably be yes... but if you really think about it, I'm pretty sure it's more than just a yes or no question. So if you have a chance you also should #TakeABreathForCF and support the CF Foundation and of course as always... Breathe out Love! Xo❤️

CF Superhero Saturday

I was so honored to be asked to be a part of a series of interviews Jessica Bean has put together for CF Awareness Month. The series is called CF SuperHero Series. So naturally my alter ego 'SML' Super Mucus Lady was Super excited. 

Jessica lives in Australia so it is already CF Superhero Saturday over there...

Throughout May she will be asking some of the people who inspire her in the CF community seven questions about their experience living with this disease. 

Thank you Jess for choosing me to collaborate with you on this project. You yourself are such an inspiration to me and so many!

Click below for the full interview. 

http://www.jessicabean.com.au/uncategorized/cf-superhero-somer-love/

Breathe out Love! Xo❤️

65 Roses

Have you ever wondered where the term "65 Roses" comes from.... 

The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as "65 Roses."

Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease, since Cystic Fibrosis can be difficult to say. 

The "65 Roses" story has captured the hearts and emotions of all who have heard it. 

I had the pleasure of interviewing Richard the boy from this story when he was awarded the Heroes of Hope Award back in May of 2008.

The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation. 

Breathe out Love! Xo❤️

Bonded For Life

"We all live with the objective of being happy; our lives are all different and yet the same."-Anne Frank

It's a unspeakable bond I can't quite explain. An understanding, and a love that's shared deep within us all. To know each other is a blessing. We are a like in so many ways, yet so different at the same time. Each and every one of us with CF is truly one of a kind. We are ALL different yet we have one thing that connects us all that puts us in the company of some of the strongest, most amazing people. The CF community is strong, caring and committed. We fight together for one thing, and one thing only a CURE.

Our common thread isn't something you want to have, but there isn't a choice and we make the best of it. We surround ourselves with these amazing people and we stick together! Blood is thicker than water.... But mucus is thicker than both!! 

I love all my Cysters and Fibros, they mean the world to me. I'm beyond grateful and so lucky to be in the company of these amazing individuals. Please feel free to share or tag someone you love with CF. 

Breathe out Love! Xo ❤️

CF Awareness Month

Sometimes we often hear "But you don't look sick"... If only people had X-ray vision.... May is Cystic Fibrosis awareness month and it just happens to be my Birthday month...coincidence?! I think not!! 😉 

So please join me this month and let's make everyone aware... CF needs a cure! 

What is CF?! Well, CF is a genetic disease that primarily affects the lungs and the digestive system. It causes our bodies to produce a thick sticky mucus. The mucus builds up in the lungs and can lead to life threatening lung infections. 

This is my actual lung X-ray, I call these my pearly whites. The white is irreversible scarring from the thick sticky mucus and the many lung infections I have had. Both the mucus and the lung infections have resulted in loss of lung function over time, my lung function currently hovers around 27-28%. I literally think about every breath I take. 

A CFers day consists of hours of breathing treatments, airway clearance, exercise, and handful of pills, and that is just the regular maintenance for when we are healthy. We work so hard day in and day out. 

CF is inconvenient, CF is exhausting, and CF will never be easy. However, I believe CF has made me stronger, it makes me fight harder, love more, and truly appreciate life one breath at a time... CF is a blessing in an ugly disguise, it's my reality and its made me who I am today, for that I am grateful. 

I will continue to fight and do my part until that one day CF stands for CURE FOUND!!  Breathe out love! Xo ❤