Five Feet Apart

Just a reminder Five Feet Apart comes out this Friday, March 15!! Go see it!! 

There have been so many different discussions and opinions regarding this movie in the CF community. Whatever feelings you have towards this movie I hope you will at least see it, and when you do I hope it will help alleviate your fears and concerns and you will see how eye opening and well done it truly is. 

I have had the opportunity to see this movie twice now, once last month and again this week, both times the audiences were moved to laughter and tears. I thought FFA was incredibly done and very relatable! Last month I went with my parents and having them both tearing up next to me was an indescribable experience. I try to protect them from CF as much as I can but the truth is this is our reality. I don’t let too many people see the hard parts of CF, I guess my mindset is to always protect and be strong for everyone, I’m not too sure why I do this because it can be exhausting... I feel like it’s just the CF way, because I know I’m not the only one. There are some real, raw moments in this film and having my support system see it with me was a vulnerable feeling but at the same time it was liberating in a way to have them see the emotions I experience and all that takes place behind the scenes. 

As the cast was introduced to us and as they took on life with CF head on as so many of us with CF do I couldn’t help but feel Claire’s presence throughout the film. CF is different for everyone and although not everyone will relate to these stories that were portrayed so well I truly believe we will see a lil bit of ourselves within each character. Human connection is so important and when you live with a disease that prevents you from connecting with the very people that get what you’re going through having more people become aware and understand your world even if it’s just for two hours means more than you know. 

This film is bringing awareness to the forefront of a disease that so many people still don’t even know what it is, it’s going to be so eye opening for people. I truly believe it will help others have a greater understanding and new perspective not just of the CF community but the chronic illness community as a whole. There is so much more to CF than what you will see in this movie but this will get the conversations started and from there we can continue to educate and spread CF awareness. 

It’s pretty amazing to me that CF is changing before our very eyes with all these amazing modulators and the drugs that are in the pipeline. I believe CF as I know it and CF that is depicted in this film will soon be a distant memory and not the reality for the children that are diagnosed today, and that is worth celebrating! Breathe out Love! Xo❤️

CF Bacteria Is Stressful

https://cysticfibrosisnewstoday.com/2017/01/16/perception-of-first-respiratory-infection-with-pseudomonas-aeruginosa-by-cystic-fibrosis-patients-relatives-analyzed-in-online-survey/ 

Very interesting read from Cystic Fibrosis News Today...

I believe the more awareness and education on CF bacterias would be beneficial and help alleviate some of the stresses for parents or patients when they hear that pseudo or other bacterias are present. 

I think there is a lot of pressure on parents when they find out their child is growing out a bacteria. They usually blame themselves or immediately wonder what they could have done differently. The reality is that these bacterias are everywhere and there is steps you can do to help prevent being exposed but if our lungs want to grow out a bacteria they will find the power to do so. I'm pretty sure that even if we lived in a germ free bubble the bacteria would still somehow manage to get in at some point. 

Everyone I know in the CF community does the best that they can do. There's the extreme germ a phobe to the relaxed take life by the horns approach there is no right or wrong approach you just have to find what works best for you and your lifestyle. Hopefully with better understanding of these bacterias minds will be put to ease that even after all the work the patient or parent has done CF will still strike. So just keep doing your best, stay strong and positive and together we will fight when CF does strike. Breathe out Love! Xo❤

Cure Cystic Fibrosis

Sometimes we often hear "But you don't look sick"... If only people had X-ray vision.... 

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 ❤

What An Honor

Thank you so much everyone for sharing this article, for all of your comments, messages, and your love and support. I think it's safe to say I am still in shock and still so blown away.

Never in a million years did I think I would be featured in Cosmopolitan and now ELLE too, let alone be on a list of this caliber... I am truly humbled. These 12 beautiful, courageous, strong, women are amazing and I am beyond honored to be on this list with them. 

I am so grateful to Cosmopolitan and ELLE for bringing awareness to Cystic Fibrosis and to all these other diseases as well. I hope that a cure is close for all of these battles and so many more. 

To the 12 amazing women I share this list with and all those that can relate to one of us... keep fighting, stay strong and continue to do amazing things. You are my heroes and you inspire me everyday. Together we will continue to fight and defy the odds! 

Breathe out Love! Xo❤️ 

http://www.cosmopolitan.com/health-fitness/g5902/inspiring-women-chronic-illnesses/?src=socialflowTW

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❤️

Love To Breathe Tokens

I can't believe it's been two years since I passed out my first Love to Breathe Token. I just updated my map and I am blown away. 

My #LoveToBreatheTokens are in over 42 countries and ALL 50 states... there are a lil over 6,000 in circulation right now. 

Love To Breathe® is the legacy I have created to leave behind "The goal isn't to live forever, but to create something that will" and that is exactly my hope and wish for Love To Breathe® and my Love To Breathe Tokens. These tokens mean the absolute world to me. 

This movement has been so amazing and so rewarding to watch unfold. I am in awe at how far they have spread over these last two years. Never in a million years did I think they would have the response that they have. My goal is that everyone can be touched in some way by these tokens, and that Love To Breathe® will soon be circulating throughout 100% of the whole world, not just 21% of it. 

I created these tokens to spread more love in the world that so desperately needs it, and at the same time raise awareness for Cystic Fibrosis. The stories and the people I have met along this journey have been so rewarding and has filled my heart and soul with so much love. My heart smiles every time I get an email, a picture of one somewhere fun, or when I hear how one of these tokens has made such a difference to someone.... I am truly humbled and so very grateful. 

None of this would of been possible without all of you. Thank you from the bottom of my heart to everyone who has helped me spread love all over the world. Thank you for telling my story and for spreading the love and CF awareness through my tokens, it means so much to me. Keep sharing and spreading the love, together we can change the world for the better. Know that whatever you choose to do love will always follow it through!! 

Breathe out Love! Xo❤️ 

Cystic Fibrosis 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 and let's make everyone aware...CF needs a cure!! This is my actual X-ray, I call these my pearly whites. The white is irreversible scarring from the mucus and the many lung infections which result in loss of lung function, my lung function is currently at 27%. 

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. A CFers day consists of hours of breathing treatments, airway clearance, exercise, and handfuls of pills to try and stay healthy. 

We will continue to do our part, until that one day CF stands for CURE FOUND!! Breathe out love! Xo ❤