living life with cystic fibrosis

 << a little end to the month of may / Cystic Fibrosis awareness month >>

On April 19, 1996, I came into this world prematurely with a life threatning lung disease called Cystic Fibrosis. This little thing was told she was only going to live to be 18. I'm overjoyed to say that I'm 19 years old and still breathing with the same lungs- no oxygen tank, no lung transplant.

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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come as you are

"And after Adam and Eve had sinned, God called to the man: “Where are you?” He answered, “I heard you in the garden, and I was afraid because I was naked; so I hid.” And He said, “Who told you that you were naked?" // Genesis 3:9-11 

Isn't it amazing that even after thousands of years, our response to sin and God's response to sin seems to remain the same? Just like Adam, when we sin, we feel ashamed, dirty and unworthy; so we run, we hide. 

Immediately after he sinned, God called for Adam. When God called out to Adam, He wasn't trying to find him. God knew well where Adam was hiding; He's God. But in that moment, God's heart was purely longing for Adam to come running back to Him, the one who loved Him. When I read the words, "Where are you?", I can just hear God crying out these words from a shattered heart: Son, "Where. Are. You..." 

Then God goes further to say, "Who told you that you were naked?". Again, God knew the answer. 

But I believe this was His was of saying to Adam, "Why are you ashamed? Why are you hiding from me? Who told you that you were unworthy? Who told you that nakedness was something to be embarrassed of? It wasn't me. I want you as you are- dirty, broken, naked and lost. I am your CREATOR and I love you immensely. Run to me. Do not be ashamed." 

 [Remember that before the fall of man, before sin had made its way into the world, being naked wasn't shameful. It was a normal thing. Sin changed that]

Just in these three short verses, God paints this vivid picture that demonstrates His perfect, all-consuming, unconditional love for us. His heart hurts when you're hurting. All He wants is an intimate relationship with you- for you to understand the depths of His love and affection for you. 

I find it incredibly humbling to serve a God, to be fully-known by a God who meets me in the midst of my messy, sin-filled life and still says, "I love you. I want you." I am constantly reminded of just how sinful I am, how deeply I need Jesus and how much my God adores me. 

I hope that as you find yourself caught in the middle of sin and shame- feeling undeserving of grace, forgiveness and love, that you would remember just how loved you truly are and what has been done for you on the cross; that you would know that there is no condemnation for those who belong to Jesus. That you would hear God's voice saying, "where are you?" and that you would respond to Him by running straight into His open arms, just as you are.

"Sin isn't breaking rules. It's violating love- it's breaking relationship. God says, if you love me, you won't break my heart. If you love me, you will cherish and treasure me and our relationship. if you love me, in all your freedom and choices, you will make choices to protect our love- how you use your freedom shows if you love me, more than if you obey a set of rules. I want your heart." // Danny Leesilk

"Come as You are" // Crowder

because when you're wildly in love with someone, it changes everything

When you're in a relationship with someone, you strive to know everything about them. You get to know their likes and their dislikes, what makes them happy and what upsets them. You make time to be with them, even if it's only for a few minutes. You get to know who they are on the deepest level possible. The thing is, you don't just get to know this person because you have to, but because you love them. Getting to know every little thing about them is something you enjoy, something you take pleasure in doing. Knowing who you're in a relationship with is so important. I know that sounds obvious and somewhat silly, but it's true. We should be continually discovering new things about the person we love and wanting to grow closer in our relationship with them.

We often make sacrifices for the one we love. We go out of our way to make this person happy because they're worth it. They're first thing you think about when you wake up and the last thing on your mind when you fall asleep. They're the person you want to talk to when you're having a rough day. They're the first person you want to tell when something exciting has happened. Talking to them is your favorite part of your day. When you're away from each other, you miss them and all you can think about is being with them. You are so crazy about this person and everyone knows it- you just can't stop talking about them. You slowly open your heart to this person and allow them into every area of your life, every part of your heart, even the places that are sensitive to you. Trust and communication becomes the foundation of your relationship. You fall in love with your best friend and you can't get enough of them.

This is what our relationship with Jesus should look like. This constant need to be with Him every second of every day, constantly craving intimacy with Him. We should be pursing Him daily; getting to know His heart and His desires- falling so in love with Him to the point where nothing else on this earth matters. An infatuation, a obsession. We radiate joy because we're so in love. People want want we have. He is the first thing on our mind when we wake up and the last thing on our mind when we fall asleep- this never ending thirst for more and more and more of Jesus- because when you're wildly in love with someone, it changes everything.

But you need to be all in or all out because no one wants to be in a relationship with someone who is only giving half their heart.