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❤️

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

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❤

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❤

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 ❤

YOU can make a difference

I saw this quote and I love it....  

"People wonder why I give so many compliments out to strangers. I'm not being fake and I'm not looking for people to like me. But if I pass someone and I like something, I say it. "Love those shoes!" or "Great hair!" or "Wow your eyes are beautiful!"....why? Because life is hard and this world can be a shitty place, and people are mean. You never know how much those few words mean to someone, you never know what hell they may be going through; and when you put positivity out there into the universe YOU yourself become a happier person. It's hard to be nice and be miserable yourself. It'll reflect from the outside in. I'm telling you random compliment giving will change your life; and maybe someone else's, too." 

I really love this... It's so true. We have the ability to change someone's day for the better, so why not do it?! You will find that we rise by lifting others. Be kind. Give compliments. Smile. Love more. That is what the world needs more of, be the change you want to see in this world. Your kindness can have a ripple effect, it just takes one person.... Let that person be you!! 

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❤️ 

We All Have Fears...

"It's better to live one year as a tiger, than 100 years as a sheep"-Madonna  

Its easy to be a sheep when faced with fear. Fear is an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat... CF is fear. 

I try to live my life as a tiger. This is not always easy, especially since you never know when CF will strike. Living with fear lurking over you can be daunting at times. However, I try not to let fear decide my fate.... If you can become fearless, your life can be limitless.

We all have fears, our fears help develop our courage... It might not feel like it but our fears make us stronger. The trick is learning how to rise up and be bigger than your fears and show them you are brave and strong. It's important to remember courage doesn't always have to roar. At the end of the day courage can be that quiet voice that says, 'it's ok we can try this again tomorrow.' The important thing is that you keep trying and you never give up. 

You have this one life... so keep living it. Make yourself proud by stepping out of your comfort zone and conquering your fears one day at a time. Breathe deep, and live your life like a tiger! 

Breathe out Love! Xo❤️

Scars

"Maybe life isn't about avoiding the bruises. Maybe it's about collecting the scars to prove you showed up for it." 

I believe life is what you make it. So make sure you keep showing up for it time and time again. Get back up and keep trying! It'll be frustrating, but keep your goals in mind and stay focused... don't give up! 

Your struggles make you stronger, and you're strong! So be proud of your scars, and continue to give hope to others. Show them that if you can do it so can they, you just never know who will be watching. We are all fighters in our on way. Some of us just have to fight a lil bit harder. Keep staying strong!! Breathe out Love! Xo❤️

Life Is Colorful

I'm grateful for my struggles and without them I wouldn't have found my strengths... We all have struggles no ones struggle is less important or more important than anyone else's. We are dealt what we can handle, so remember to always trust your story. 

Having a disability doesn't give you a free pass to be mean, lazy, or rude. In fact it should make you more humble, sincere and more compassionate. It should give you a understanding and a drive to BE more and to DO more, and of course LOVE more. Life is colorful.... so no matter what is thrown your way always remember to keep coloring!!! 

Breathe out Love! Xo❤️

Love To Breathe Tokens®

Love To Breathe Tokens® are on their way slowly but surely. Thank you for your patience as I am slowly getting back to each one of you individually when I am able to. However, in the mean time thank you from the bottom of my heart. I'm honestly so lucky to be a part of all your lives and am beyond grateful for ALL your love and support. 

Each and every one of you are such an important part of my life and part of my CF journey. Please know that I am so grateful for all the love, kind words, messages and emails, your love does not go unnoticed. I see it and I can literally feel the love right through my screen.... my heart is overflowing! I swear I can hear you cheering me on and for that I am so grateful.

I have said it before and I will say it again you guys truly keep me going. So thank you for being the reason I smile each and every day. 

Breathe out Love!! Xo❤️

My Heart is Full!

For all of those that missed my story tonight here is the link! My heart is SO full! Dan Rascon did such an amazing job. I just absolutely love KUTV 2News. 

The whole team at KUTV are so amazing I'm honored to call Shauna Lake, Mark Koelbel, and Dan Rascon friends. Thank you for telling my story so eloquently and helping me spread Love and CF Awareness! It's people like you that will help make CF stand for CURE FOUND! Breathe out Love! Xo

http://kutv.com/features/inside-the-story/inside-the-story-woman-spreads-love-awareness-of-cystic-fibrosis-around-world 

Love To Breathe Award

Tonight I had the honor to present the Love To Breathe Award® to Sue Meihls, the pediatric CF nurse at Primary Children's Hospital. 

She is very deserving of this award, and is everything this award stands for and more. Sue is passionate about CF, she's out in the community making a difference, she is always raising awareness, and she is loved by so many in the CF community. Sue ultimately wants CF to stand for CURE FOUND!! 

Her tireless efforts give so much hope and comfort to so many families. She goes above and beyond every single day. She's magical really, she can complete tasks and get things done even before anyone knows they are tasks. 

I asked some of her peers, her patients and their families and her friends to describe her in one word these are the words that were used. Tenacious, Perfection, Friend, Compassionate, Empathetic, Reliable, Trust Worthy, Dedicated, Mother Bear, Loving, Hope, Devoted, Comforting, Hard Working, Passionate, INSANELYorganized, Sufficient, Thorough, Dedicated, Tan, Committed and 

Supercalifragilisticexpialidocious. 

Congratulations Sue, thank you for ALL that you do everyday! 

Breathe out Love! Xo❤️ 

3 Months on Orkambi

**Orkambi update** 

"On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through the bad days so far is 100% and that’s pretty good.” 

I did it!! I made it to the 3 month mark on the full dose of Orkambi! Phew... This med has been really tough but I think I am finally seeing side effects subside. Really the only thing I still experience is that dang shortness of breath and my right lung is still having this random popping pain. Everyone that I have spoken to that is on Orkambi has said after 3 months they started to see side effects subside and some positive results. So I'm hoping that is the case. I have been having some really good days where I don't have and side effects, and then of course I tend to over do it on those days and then I need a couple days to recover. I can always tell when I over do it because that is when that pain in my lung is the most painful. So looking for a way to balance it all out.... Baby steps!! 

I think it's still really hard to tell any changes maybe because they are all happening gradually. This last week I have been getting out mucus plugs from my lungs, which is HUGE! They are basically petrified mucus plugs dark and harder than a rock. Who knows how long those have been down there?! Of course I took photos and if you didn't get a text from me of my petrified mucus that was the size of a watermelon seed well, you're welcome. ; ) Ha ha. So fascinating and definitely worth celebrating!! Definitely a great step in the right direction. 

My next appointment is in March and I'm very hopeful things will be great. I'm excited to see what I will blow, but don't want to focus on the numbers too much. I'm just focusing on each breath I breathe, how I feel and how far I've come rather than how far I have left to go... Literally one day at a time! 

Breathe out Love! Xo❤️

You Have To At Least Try

Today marks 11 weeks on the full dose of Orkambi (update coming soon). I was reminded of this post I wrote exactly one year ago today. Re reading this post has even more meaning today as it did one year ago. My thoughts are still very much the same. We are not obligated to do anything we don't want to do, but why would we not try to better ourselves or others around us simply because we can? I'm grateful for my struggles without them I wouldn't have found my strengths... Trust your story. 

Jan. 21 2015

I scrolled by a quote yesterday, I have read it over and over again... For some reason it really resonated with me and at the same time it really rubbed me the wrong way. The quote is... 

"You are not obligated to do everything a healthy person does. You are not obligated to be an inspiration. You are not obligated to hide your illness in order to make other people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can't get up to do anything but go to the bathroom. It is not your fault if other people leave you for your illness. It is not your fault you are sick. You don't have to apologize for something that is out of your control."-Unknown                                            

Everything about this quote is true... I have even had some of these thoughts and for a split second I will think about it, but I wouldn't give them any more thought than that. I am sure I will have some of these thoughts in the future, and maybe even one today. I will not hide my illness but I will always tell you I am fine, this is not to make others comfortable but to make myself comfortable.... Why dwell on bad thoughts or negative energy when I can guarantee you it could always be worse. I know I was given this life because I am strong enough to live it. 

So yes I AM obligated to TRY and do everything a healthy person does. I WANT to be an inspiration. I do know my limits and I FIGHT to surpass them every day. Everyone has limits everyone should try and learn and grow and become stronger from them. Of course I'm allowed to have bad days and believe me I do. In fact everyone is allowed to have bad days, I promise you tho on your worst day there will always, always, be good. 

Having a disability doesn't give you a free pass to be mean, lazy, or rude. In fact it should make you more humble, sincere and more compassionate, it gives you a understanding and a drive to BE and to DO and of course LOVE more. I will never apologize for my CF it's made me who I am and for that I am so very grateful. If someone has a issue with your disability it is clearly just that, their issue. 

So today I will BE me and I will DO my very best. I will LOVE more and I will hold my head up high, smile, and fight.... I will continue to be strong and I will sing!!! I will sing so loud, and maybe even do a lil dance and you better believe it will be to a Madonna song!!! Breathe out Love! Xo