Back to "real life"

As I sit here and reflect on the last couple weeks and transition back into "real life" I am truly humbled!! Hospital life is tough, and it can be frustrating, CF is definitely something you can't fight alone. Having a support system is so important when it comes to facing any battle, no matter the size. 

I am blessed beyond measure to have the support system that I do.... From the medical staff, my CF team, my CF family, to all of you that follow my journey, my amazing friends, my wonderful family, and to the two that started it all and that have been with me every step of the way, my parents. You ALL play such a huge part in my life and continue to keep me going time and time again. 

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and joined the fight.

I fight so hard day in and day out, not just for myself but for ALL of you. These last couple weeks have served as a good reminder why I fight so hard. My numbers weren't really where I wanted them to be when I left the joint this time around. I left at 27%, numbers are so frustrating and I try not to pay to much attention to them, which is easier said than done. 

The most important thing is that I feel better, my mucus is beautiful, and I am HOME!! Healing at home and being in my own environment makes me feel like I'm practically cured. ; ) 

I am confident when I go to my hospital follow up appointment I will see that 30 again. I am going on 7 weeks now of the full dose of Orkambi, I am noticing lil changes and I am still very hopeful. 

Thank you from the bottom of my heart for all of your support. I'm not sure you know how much it truly means to me. You ALL make fighting CF that much easier, and for that I am forever grateful. Breathe out Love! Xo❤️

My CF Life

"Just because we are knocked down does not mean we are out. We still have breath in our lungs and tears flowing down - all signs that we are alive. Take a deep breath and be reminded that often our biggest struggles are the stepping stones to our greatest victories."-Rae Smith

The human body is amazing!!! I'm constantly blown away what my own body endures on a daily basis. 

This last week I have had fevers, hemoptysis, pleurisy you name it. I am breathing with only 28% of my lungs, my heart rate has been hovering around 130, my body seems to always be burning the candle at both ends. So sometimes I need to just stop and let my body rest and take a good old fashioned time out. I have been out of the joint for almost 2 years now, 22 months to be exact, which to me is a huge accomplishment. 

I don't wave that white flag often but I feel like I have given this lil rough patch of mine all the fight I can, I'm exhausted and need a lil extra help. It's funny how waving that flag can give me a sense of relief. I am hoping this two week stay in the joint with some aggressive high dose IV antibiotics will be just what my body needs to get over this lil hurdle.  

I work so hard day in and day out, every second that I spend on my health is so worth it. I am so blessed that my body keeps allowing me to live, to love, and to breathe, I will never stop fighting. CF is inconvenient, CF is exhausting, CF is not easy. However, CF has made me strong and has made me appreciate all the lil things in life. CF makes me fight harder, love more and truly appreciate life one breath at a time... CF is a blessing in an ugly disguise. This is my reality and its made me who I am today, for that I am so very grateful. 

I am beyond blessed to have this amazing support system that I do. With all of you behind me I know I'll be back to burning that candle in no time. CF will never stop throwing these sucker punches my way, but I know together we will show CF who's boss... Thank you once again for all your love and continued support. When I think about it CF really doesn't stand a chance. We got this!!! 

Breathe out Love! Xo❤️

A Lil Glimpse Of My Life With CF

The video that was played at Taste of Utah this weekend.... 

https://www.facebook.com/lovetobreathe/posts/1183137438381135

We are so close to a cure, but we aren't there yet. We have to keep the momentum going!! 

Breathe Out Love! ❤️

Taste of Utah

With each breath roses grew. 

My garden gave me the most beautiful view.

The world can be so scary and dark. 

I'm thankful this rose allows me to see with my heart. 

-Somer Love 

This rose of mine has blessed me to see so much beauty in this world. Tonight my heart is overwhelmed with gratitude. As I looked around tonight I couldn't help but notice I was surrounded by a room full of beautiful people who gave so selflessly. It takes a village to live with CF and I couldn't be more blessed and proud to have the village that I do. 

There is so much work that goes into events like Taste of Utah. I thank every single one of you that had a hand in making tonight the success that it was. It's people like you that will make CF stand for CURE FOUND. I wish I could of spent more time with each of you that attended or volunteered tonight. This event takes all year to prepare for and it is seriously over in a blink of an eye. 

The donations for bid for a cure brought tears to my eyes. I am so very blessed!!! CF doesn't stand a chance with all of you fighting for a cure right by my side. I promise you we will see that day soon.... We just have to! I want nothing more than all my lil CF kiddos to have long healthy lives, and I promise you I will never stop fighting for that day we find our sought after cure. 

Breathe out Love! Xo❤️

Healthy Tips I Swear By....

It's that dreaded time again ... Cough, cough, sneeze … Yuck! I’m prepared, though. And you can be too. Check out the top nine tips I swear by for staying healthy during cold and flu season.

https://www.facebook.com/lovetobreathe/posts/1163944993633713

Grateful For This Moment

I saw this quote and I can't stop thinking about it so I wanted to share it with you.... 

"Letting there be room for not knowing is the most important thing of all. When there's a big disappointment, we don't know if that's the end of the story. It may just be the beginning of a great adventure. Life is like that. We don't know anything. We call something bad; we call it good. But really we just don't know."-Pema Chödrön 

I guess we don't really know anything and that's ok. We say things are good and we say things are bad, but do we really know? I guess not, and that actually makes sense. All we can do is be in the moment, and take every moment after that as it comes. So for now, just be grateful for this very moment. 

Breathe out Love! Xo❤️

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❤️