Surviving Is My Reality

"And so she breathed through her life as if it were a battlefield and wished that one day she would actually live, and not just survive."


This quote is so fitting. CF is my battlefield I will tell you that surviving this battlefield is no easy feat! Today my CF apt was loooonnnggg and a lil bit draining to say the least. My mind is always on overload after appointments like today. I truly am in awe and so very grateful for this body of mine, it seriously amazes me everyday at how hard it works just to survive. 

My lungs are on a slow but steady decline. Seeing loss in lung function and facing the reality of what percentage of lung power I have left can be somewhat discouraging. However, I try not to focus on the numbers too much... it's easier said than done, but the mind can be a powerful healing tool. I have one month to turn these numbers around or I'll be joint bound. Until then I will continue to breathe through my battlefield and do everything in my power to survive because surviving is my reality and I have to be ok with that. 
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❤️

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❤