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