Friday, September 23, 2016

One Year On Orkambi

I can't believe it's already been one year!! I was so nervous to start this drug, there were so many unknowns and so many questions. Although it may not be easy, there are times where you just have to be okay with not knowing what will happen next... 

Having the opportunity to take this drug that I had waited my whole life for was such a blessing. For the first time in a long time Orkambi gave me a glimpse of hope. Hope for a prolonged future, and hope that maybe I can live just a lil bit longer. I had so many questions when starting Orkambi and of course I couldn't help but have some high expectations. 

Will Orkambi be the right drug for me? Will it help me get off oxygen? Will it thin out my very thick mucus? Will I see my 40th birthday? Will I soon need a life saving double lung transplant? These were just some of the questions I had asked myself before starting Orkambi and actually I find myself still wondering these very same things. 

Unfortunately there is still so many unknowns and unanswered questions. I'm still not sure if Orkambi is the right drug for me. It still may take some time to see any type of results with it because of the stage of my disease. One thing I do know though is that this drug has done some amazing things for so many and that makes me very happy. 

On sept 30th the FDA will decide if this drug should be available to 6-11 year olds with CF.... I sure hope they approve it for them. This drug is doing wonders for those with healthy lungs. It could be life changing for these young kiddos, and nothing makes me more happy to envision my lil CF kiddos with grey hair and wrinkles. 

So today as I swallow my morning dose of Orkambi I will continue to focus on this drug working it's magic deep inside my lungs... so deep that we just aren't able to tell quite yet how it's helping me. I'm not giving up on Orkambi, I have so much hope for what's to come.... 

There are so many great drugs in the CF pipeline. I am hopeful that if Orkambi ends up not being the right drug for me there soon will be another drug that will help answer all my questions.... and maybe, just maybe meet my high expectations. 
Breathe out Love! Xo❤️

Saturday, August 27, 2016

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 ❤

Tuesday, July 12, 2016

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❤️

Thursday, June 9, 2016

Be Positive

"There are always flowers for those who want to see them."-Henri Matisse

Every experience we encounter is an experience we can grow and learn from. Its up to you to find the positive and the good from each experience. When we let go of the negative, positive things will start to happen... and I promise you, you will start to see flowers. 

Sometimes taking a step back, and looking at things differently can change your perspective. So when you start to see flowers make sure you take the time to stop and smell them too. Rejoice in the positive and appreciate the true value of every moment... Breathe out Love! Xo❤

Monday, June 6, 2016

Thank Heaven, I'm 37!!

"I wake up every day and think, I'm breathing! It's a good day."-Eve Ensler

I turned 37!!! A number I have waited my whole life to be, this year turning 37 has been so surreal for me, so many emotions surround this number. 


I am 37, ha ha, I have to keep saying it out loud, it's so hard to fathom. You're probably thinking what's the big deal about 37.... Well, from when I can remember, or from when I probably truly grasped the concept 37 was the average life expectancy for CF. So for most of my life I have basically had the number 37 dangling over my head. I'm so grateful for all the medical advancements, and amazing people like you that have recently helped increase this number to 41... I have tried to never let statistics keep me from living my life or dreaming the impossible. I always say keep your hopes high and dreams BIG! 

To actually be turning 37 is so surreal. It is such an accomplishment, and mind blowing at the same time, it comes with a lil bit of anxiety because I made it, now what? What's next? It also comes with a some survival guilt, I have had so many close friends not even make it to 30. I am so very grateful and blessed to be here another year. I really love getting older, it's a privilege denied by way too many. Aging is a gift that I am so very proud of! 

We don't know the whys, we don't the what ifs, all we know is that this very moment is all we have, and that's what we need to celebrate! I know that nothing is worth more than this day, right here.... right now. So for now I celebrate ALL the love and ALL the people that have gotten me this far. They weren't lying when they said it takes a village, and I couldn't be more grateful for everyone that has helped me make it here!! We did it!! 

With ALL my amazing angels watching over me every day I couldn't think of a better theme for this year.... Thank Heaven I'm 37!!! I'm old and I absolutely LOVE it!!

Breathe out Love!! Xo❤

Friday, May 27, 2016


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. 

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❤️

Friday, May 6, 2016

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.

Breathe out Love! Xo❤️