Tuesday, November 25, 2014

Happy 30high5 1/2

Happy 1/2 bday to me.... 30high5 1/2  woop woop!! 

Wow well those last 6 months sure flew right on by!! Of course I celebrate my half.... Don't laugh!!! Ha Ha ;) 35 1/2 Madonna knows what's up!! Right Madonna?! ;) 

Everyone should celebrate their 1/2 Bday! Be proud of your age!! Growing old is a privilege, denied by way too many!! 

Have the most amazing day, and as always.... Breathe out Love!! Xo❤️ 

Friday, November 21, 2014

She Did It!!!

Click here https://www.facebook.com/video.php?v=963898933638321

That is the link to my FB page. I posted the whole video of Drae doing her very first sinus rinse there. Hooray!!! She did it!! I'm so proud of her... we attempted her very first sinus rinse and she conquered it like a rock star!! There were some tears at first and she was unsure but she wanted to do it so bad. She was a lil nervous it would hurt her owie that she got the day before on the playground. But it didn't and after the first couple of tries she was doing it ALL by herself and she was so proud of herself, she was even a lil sad when the sinus rinse was all gone. I think my favorite part is when she tells Suz "see I told you mom" of course and her wanting to do it together! I just adore her, she melts my heart. 

Tuesday, November 18, 2014

See with your heart

For those that know me you know I see love in many random places. 

I thought it was fitting as I was speaking to a room full of so many amazing people that took time out of their lives to learn about CF and help raise money for a cure. This time love found me literally in more ways than one. There was so much love in the room at Taste of Utah. Right when I saw this photo I immediately spotted the heart on my neck. How crazy is that?!

See with your heart.... 

Breathe out Love! Xo❤️  

Monday, November 17, 2014

So Proud

I couldn't be more proud of Daniel and Suzie. They did such an amazing job last night! I'm blessed and honored to call them my friends and well their daughter she is my hero. If you ask Drae why we are cysters she will say because "we both like pink and purple" and because "we both have Cystic Fibrosis." 

When we were FaceTiming the other day and her Nema came in the door Drae was so excited to tell her Nema that I too have Cystic Fibrosis. It was adorable, to see how excited she was that she wasn't alone in this battle. CF can be an isolating disease and when you're little and you don't know anyone else with CF I think that would be so hard. Seeing and knowing someone else that fights the same disease you do gives you a sense of normalcy even tho being normal is SO overrated! The bond we share isn't something I can explain but it's truly important to me and something I wouldn't change for anything. Drae has very special place in my heart, I look up to her in so many ways. 

Thank you Daniel and Suzie for all you do to help find a cure. You guys were amazing last night, you made a huge impact on so many and I know Daniel you will be able to bring that cure home soon to Drae. 

Suzie I have no words... That's rare I know ;) It's crazy to me we have only known each other for 5 years it feels like I have known you all my life, and who knows maybe I have. I know our paths were meant to cross #IITF my #BGF bonded for life!! It's not everyday a stranger comes up to your table at brunch and tells you that seeing us made them happy, and that what we have is special, I already knew that but it sure was great to hear!! Love you guys infinity! ❤️ 

Sunday, November 16, 2014

Taste of Utah!

"They say you have never really lived until you have done something for someone that can never repay you"                  

Ricki Lander and Robert Kraft consider it done.... You have lived!! Thank you from the bottom of my heart! Your generous donation last night of $25,000 will help pave the way for that sought after cure for me and all my Cysters and Fibros. 90 cents of every dollar goes towards funding research. A cure is so close I can "Taste" it!! Thank you Torp for being my beautiful BFF inside and out, I truly am so lucky!! Torp and Roberino it was so amazing to have you both be a part of Taste of Utah last night. I'm pretty sure everyone's mind was blown!! I love you both SO much. You're the cheese to my macaroni Torp... and that's the blue box Roberino just for you 😉 Ha Ha!! Thank you guys so much for your generosity and your commitment to finding a cure!! Tonight's Bid For A Cure alone raised $69,000 the best year yet. Thanks for helping to make that happen!! I can't wait to get a grand total of the evening. Xo infinity! ❤️ 

Thursday, November 13, 2014

Super Mucus Lady

Because every Super Hero needs a couple of sidekicks! Super Mucus Lady can't fight the mucus alone!        

✨||CYSTER POWER|| ✨    

Love To Breathe Tokens

I had the most amazing story sent to me yesterday from my friend Natalie...                                     

We brought Love To Breathe™ to Louisiana, looking for the perfect situation to leave a token behind. We found it today in Bill, a man who decided not to evacuate when Katrina came. By the time he was evacuated to safety, the flood waters were up to his shoulders. He helped get woman, children and non-swimmers into the boat before he climbed aboard. He was told that he was being evacuated to a safety shelter. That shelter turned out to be the Superdome, someplace far from safe. The roof collapsed, there was no power. Gangs operated inside. He didn't sleep for five days for fear of being killed in his sleep. He couldn't leave...anyone who left would be shot by the military as a looter. He was imprisoned. When buses finally came to take people to neighboring states, pandemonium broke out. Pushing, shoving, trampling. He truly believed that this is how he would die. He survived and is haunted by his experience. We felt that this man needed to be given love and to be reminded that each breath is a gift.... 

I love this story so much,  as I read it it brought tears to my eyes. This is why I created the Love To Breathe Tokens, I hope Bill keeps his token close.... what an amazing guy. 

Thank you Natalie for finding him, although Im pretty sure he found you! 

Breathe out Love! Xo❤ 

Wednesday, November 12, 2014

Breathe on.... Love on

I had CF clinic yesterday.. 

In this pic I am doing PFT's (pulmonary function tests) 

I Blew a 27% which is down a couple points but some other numbers were up... so I'll call it a wash 😉 

I'm glad that I was able to escape a two week admission today. Seeing the numbers and facing the reality of what percentage of lung power I have left can be somewhat discouraging, so I try not to focus on the numbers to much. Sometimes this is easier said than done...however, the mind can be a powerful tool. I am so grateful for the medications available to me that allow me to keep maintaining my lung function and hopefully the new medications will be here sooner than later. 

Until then I will continue to keep kicking CF's butt, stay positive, stay compliant and continue to spread love.

 "Im not saying its going to be easy, but it will be worth it" 
Breathe out Love! Xo❤