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With Oxygen on Their Back

For those on oxygen who have a story to tell. Who have kept fighting, never given up, and are stronger then they ever thought possible.

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Today may be the end of CHD awareness week but it’s not the end of my journey with CHD. My journey began before I could breathe fresh air. Before I even had my first surgery. My heart formed in its own beautiful way inside of me. A beautiful heart that needed 5 surgeries to make it beat better. And as I have grown, my heart has needed more help. Oxygen. Medicines. Diet changes. And most of all my heart needed me to be a warrior. A CHD warrior. A warrior who, while frustrated at times, learned to give up things so that my heart could be happier. A warrior who could conquer heart caths, doctor appointments, medical treatments, and procedures better then a trip to the dentist. A warrior who would fight just as hard as my heart beats. My dear heart, my life would be so simple and normal without you. Yet, everyday I’m thankful that you beat inside of me. You are the true definition of a warrior. And no matter if one day I lose you to a transplant or if you live inside me forever, please know that I love you. You have given me a hard, yet beautifully golden life. Thank you for choosing me to live out life with. And to my CHD warriors, keep fighting the good fight, for our journeys are still going. All our stories are different but all our hearts are beautiful. #chdawareness #chdawarenessweek #chdwarrior #warrior #pulmonaryhypertension #fragmentsofliving #oxygen #fighter

Oxygen. One cord. One machine. And a massive life change. Three years ago my oxygen randomly plummeted and I knew something was wrong. And after seeing the doctor, I was diagnosed with Pulmonary Hypertension. This means, for me, that the pressures in my heart are higher then the pressures in my lungs so my deoxygenated blood is bypassing my lungs and going straight to the heart causing my body to lose oxygen. We quickly realized I needed it 24/7 especially when active. It was a sudden and life changing change. I went to work one week with no oxygen and came back with tanks. And sadly it took it me a while to realize that that wasn’t normal.😂 Within a few weeks, I got my very own Inogen machine. It’s an oxygen concentrater that makes its own oxygen but yet is small enough that I can travel, work, and live life with it on my back. So of course, with my best friends help, I named it Zanna which began my journey on Instagram. Zanna has become my sidekick through life and helps keep me oxygenated since my body can’t on its own. And in a weird way, I see her as her own little person just chugging and working along side of me. Thank you Inogen for making my Zanna! Over the past three years I had to learn to love myself and find confidence again. Being on oxygen makes your invisible illness, visible. I had learn to that I was still me underneath that cannula. PH has changed my life so much. Every day is different with it. Being on oxygen is something I never thought would happen and being dependent on a machine can be scary sometimes. But I’ve learned to just embrace it and to just make it work for me. Plus having a build in playground for kids is the best! 😂 And watching my niece twirl her fingers in it is quite special. PH is a disease that I will have for the rest of life. It may get better. It may get worse but it will be there. And Zanna will be right along for the ride! To my PH warriors, please know that you are beautiful and a fighter. Keep on fighting! And if anyone needs a backpack for a G3 please DM me or @zipperedheart. ❤️💪🏻 #ph #pulmonaryhypertension #oxygen #inogen #zanna #alwayskeepfighting #loveyourself #chd #chdawarenessweek #fragmentsofliving

While this photo was being taken, my best friend tripped and she caught me laughing at her. She later said, “you should post this and just say I choose joy.” So here it is “I choose joy” and I do. I CHOOSE to have joy everyday. Joy to me is like this photo, laughing in the small moments. Finding ways to smile during the darkest times. Lately, my body has been struggling and it’s frustrating because I had a great month of energy and rest and now it’s all gone. My body is gearing up for another battle and it’s hard. Many nights I lie awake thinking it was a rough day but I remind myself of all the good that happened too. Joy is not something that is always there, most days we just have to choose it. Choose to smile. Choose to laugh. Choose to find one good thing in our day. It’s ok to have a bad day. To fall apart and break down. But the moment we decide to pick ourselves up, is the moment we choose joy. And sometimes joy is not a bowl full of laughter. It can just be, like for me, learning find the happy in dancing to the rhythm of my chronic illness body. I hope you find a little bit of joy today. “I choose joy!” “Let it move you!” Joy- For King and Country #ichoosejoy #forkingandcountry #joy #burntheships #music @forkingandcountry #chronicillness

I’m beyond thankful for these group of people in my life. The people who are constantly there for me through every battle. Because of them, hospitals don’t scare me as much. Nerves are transferred to another hand and fear becomes laughter. My parents are the ones who come along with me on appointments, put up with my break downs, make sure I have food and medicines, and always there to offer a hug. My brother may have his own life and too big to cuddle up and read, but he is a constant support in my life. Him and his family are always there if I need them. I was in the hospital so much as a child for surgeries, that we had to make it fun. My dad would do the airplane with a spoon so I would eat. My mom would sit and color with me for hours. And if you look the polka dotted door at the bottom, she actually cut those out during my surgery and polka dotted my entire room! When we left, we left a trail of dots on the nurses station. :) Being chronically ill is not easy. For the patient or the family. But if you find ways to make laughter through the tears and joy through the sorrow, then life will be a little brighter. CHD changed my life before I was born. And in many ways I’m thankful for this journey and for God allowing me to be born to this dream team right here. Without them, I literally wouldn’t be the person I am today. Thank you my amazing, beautiful, and fearless family! Love you with all half of my heart. #chdawareness #chdawarenessweek #tricuspidatresia #hospital #dreamteam #fragmentsofliving

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Learn About How I Breathe

I Am Constantly Fighting December 1, 2017
I Am Courageous September 29, 2017
I Am Invented September 27, 2017
I Am An Overcomer September 25, 2017

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