Orkambi

Although it may not be easy, there are times  where you just have to be okay with not knowing what will happen next... 

For the first time in a long time Orkambi gives me hope. Hope for a prolonged future, and hope that maybe I can live just a lil bit longer. I still have a lot of things I want to do here... I love my life. 

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 are all questions I ask myself all the time. 

I have asked so many questions and I have read countless stories of everyone who has started Orkambi before me and the truth is everyone has had different experiences. We just don't know the answers to all of my questions because we simply won't know if Orkambi will help me until I give it a try. 

I have lived a very blessed life, having the opportunity to take this drug that I have waited my whole life for is just one more blessing I can add to my very long list. I am happily grateful for everything life has thrown my way and beyond grateful for all of you. I'm not sure if I have ever been more nervous about something, so if you have time or if you think about it if you could send some love, positive vibes, prayers or anything in between my way it would be greatly appreciated. 

As I swallow my first dose on Wed Sept 23, 2015 I was and continue to be focused on visualizing a positive outcome with minimal side effects. My heart is filled with hope that I will come out on the other side of these next couple weeks with stronger lungs and deeper breaths.... and most of all hope that I can stick around here just a lil bit longer. 

Sending you all so much love and from the bottom of my heart thank you, thank you, thank you for your continued love and support, you truly keep me going! So here we go.... Cheers to Orkambi and getting some answers to all of my questions. 

Breathe out Love! Xo❤️

Love To Breathe® Tokens

Today I went to a Starbucks in downtown Salt Lake to meet an amazing friend, so this wasn't my regular Starbucks. 

So I plopped my backpack on the counter as I was paying and my new friend Jon made a comment about having the same pin as me. I have pins on my O2 bag and I made one of my #LoveToBreatheTokens into a pin and there is only one like it, so you can imagine my confusion. 

So I asked him again while pointing to my token if this is the pin he was talking about... and apparently he doesn't have it as a pin, but he had just been passed one of my tokens. I was so shocked. So I pulled out a token from my pocket and smiled the BIGGEST smile ever and said, "its me... I'm the one that makes these tokens." Ha ha. I was literally so excited, and my mind was literally blown. Im pretty sure it's safe to say his mind was blown too. 

They are working guys!! My Love To Breathe® Tokens are being passed around. Jon at the downtown #Starbucks seriously made my day!!! If you're in the downtown Salt Lake area go visit Jon at the 600s Starbucks, you never know he may just pass on his token to you! 

Breathe out Love! Xo❤️

 

 

 

Just Love

"And in the end, we were all just human... drunk on the idea that love, only love, could heal our brokenness."  

Hard to believe it was 14 years ago. A day that started out with so much hate, finished with so much love. We all came together, we were all ONE. From first responders to all those who lost their lives we will never forget. This day 14 years ago forever changed us ALL in some way. 

Never take anything for granted, love a lil more, and live life to the absolute fullest. Remember that where there is hate, there will always be LOVE, and LOVE will always win; it will heal our brokenness. 

Breathe out Love! Xo❤

In Memory of Brookes

I have met so many amazing people along my journey. Just the other day I received a message from my new friend Tanya. She shared with me the story of her brave son Brookes... this year would have been his 35th Birthday. Brookes had CF and passed away Sept. 3, 1988 at the age of eight, following one of the very first heart/lung transplants for CF patients in this country. He lived in Vermont where Milkweed is plentiful and he could often be seen opening up their pods filled with magical wishes and angel wings. 

In his memory she is asking others to plant milkweed in their own backyards to create a  way station for the Monarch butterflies. For information about monarchs, milkweed and way stations, go to www.monarchwatch.org. 

I have always been a huge fan of butterflies and never even knew about the importance of milkweed and way stations. Tanya is sending me some milkweed seeds so I can plant them in my backyard. Although my thumb is far from green I am honored to be a part of Brookes' story. If you happen to find yourself planting milkweed after reading this comment below with what State you live in, so Tanya can track Brookes' path of angel wings. 

I believe every experience doesn't just happen by chance and I found myself smiling when Tanya was telling me about the butterflies and milkweed. I was smiling because I remembered this photo I took last year when I attended a butterfly release just 8 days before Brookes 34th bday... I sent it to Tanya and she confirmed that the pic I took was indeed of milkweed. I'm pretty sure when I snapped that pic a year ago it was just my angels above keeping me on track. 

Breathe out Love! Xo