Sunday, December 20, 2015

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❤️

Thursday, December 3, 2015

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❤️