<< a little end to the month of may / Cystic Fibrosis awareness month >>
Cystic Fibrosis is a genetic disorder that affects 70,000 people worldwide. Let's just take a moment and recognize there are one million people alone just in my city.
Currently, the life expectancy for someone living with Cystic Fibrosis is 37 years old and it's only increasing. Praise Jesus. CF mainly affects the lungs but also the digestive system, reproductive system, sinuses, sweat glands, liver and kidneys. CF causes the body to produce thick, sticky mucus that builds up in the airways which leads to life-threatening lung infections. This abnormally thick mucus also obstructs the pancreas which stops natural enzymes form helping the body break down food and absorb nutrients (click here for more about CF).
Just one month with Cystic Fibrosis consists of 560 enzymes and 250 vitamins. 62 puffs of Advair, 124 puffs of Xopenex and 15 sinus rinses; 1,860 minutes doing breathing treatments- that's 186 vials of medicine and 62 vest treatments. A home nurse comes once a month to flush my port in my chest so I don't get any clots or infections. Here's the thing, this isn't just one month, it's every month. This is my life. Sometimes these hours of treatments and hundreds of pills aren't enough. Bacteria makes it's way into my lungs or my lung function drops and I have to be admitted into the hospital for a minimum of two weeks; iv antibiotics, blood draws every few hours and double the treatments. A life of endless doctor appointments and constant coughing. Reality is, life with Cystic Fibrosis is unpredictable and it's a fight, but I serve a God who fights every battle for me and has given me fullness of life.
These scars are physical evidence of my fight against my internal, invisible disease called Cystic Fibrosis. It's extremely rare to see me post pictures of my body because I am insecure about the box shaped body I have due to CF, living in a society who puts so much importance on curves and a flat stomach. Today I choose to be brave, confident and vulnerable as I expose just another piece of who I am to you.
Fundoplication : The tightening of the valve between my esophagus and my stomach which stops acid reflux.
Pyloroplasty: Widening the opening in the lower part of my stomach so that my stomach contents can empty into my small intestine. The scar going vertically down the center of my stomach.
Ileostomy: Opening in my belly wall that was made during surgery to remove waste out of my body because my colon didn't function properly. Removal of part of my small intestine; The horizontal scar.
There's a small dot like scar hidden underneath my shirt to the left of my vertical scar which is where I had a feeding tube because I couldn't gain weight.
Port (Portacath): A catheter connecting a little medical appliance to a vein underneath my skin. Used for delivery of iv antibiotics.
My stomach scars have been there since the first day of my life and my port was recently placed in October 2014.
"You restored me to health and let me live. Surely it was for my benefit that I suffered such anguish. In your love you kept me from the pit of destruction" // Isaiah 38:16-17
Over and over again I'm reminded that my life here on Earth is so temporary; life with Cystic Fibrosis is so temporary. I have chosen to put my trust, my whole life in the hands of a God who is wildly in love with me and who is continuously taking the broken things in my life and brining good out of them. I trust that during those moments where I don't understand, He is still there, He is still God. I have seen His provision, His faithfulness, His healing hand, His fulfilled promises and His protection over my life. I have experienced the peace that surpasses all understanding and I've experienced joy on my sad days. Every day of my life, even the hard days, are never wasted because I've got a God whose plan far exceeds my own. He is so real and He is so good.
Until a cure is found, until Jesus returns or until my last breath, I will fight to breathe and spend all my days telling people about the hope I've found and the abundant life they can have in Jesus. Cystic Fibrosis is just a little piece of who I am- my identity and my worth is found in Christ alone.
"For this sickness will not lead to death, but to God's glory." // John 11:4
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