Wednesday, April 17, 2013

Cystic Fibrosis- My heart hurts

I don't know how to begin this.

My heart hurts.  Tonight I stood in the shower and just cried and cried.  I don't want to lose my best friend.  This world makes me really sad.  Why do bombings happen?  Why do school shootings happen?  Why are there terminal illnesses?  Why do 3 year old sweet precious darlings get diagnosed with terrible diseases for which there are no cure?

When I was in the tenth grade, I met the funniest girl.  She had a really high ponytail of bouncy curls, was the field hockey manager where I had held that position the year prior.  She was the happiest person I had ever met, and was more quick-witted than anyone I had ever spoken with.  She had an infectious laugh and anyone who talked to her was her best friend within five minutes.  She was smart as a whip, no class or subject could stump this girl.  With no time, somehow some way, this girl became by best friend.  Through high school and some ridiculous boy situations, girl drama and absurd drives (we thought it was a good idea to get a job 30 minutes away tutoring math because it would look good for college?)- we were inseparable.  College came and we stayed best friends.  A few times a year she has gotten really sick, and nothing scares me more.  I cannot imagine my life without her by my side.  She is my heart and soul.  We used to SCREAM a Relient K song in my terrible old baby blue Saturn with the sunroof down 
"We should get jerseys cause we make a good team
But yours would look better than mine, cause you're outta my league
And I know that it's so cliche to tell you that everyday
I spend with you is the new best day of my life
Everyone watching us just turns away with disgust
It's Jealously, they can see that we've got it going on"

She is my soulmate, my true best friend, till death to us part.  I love my fiancé with all that I am, but she knows me better than anyone ever has or will.  She has known me through some terrible high school phases, through college identity crises, through depression and medical problems.  We know one anothers' family problems and true selves.  She's the reason for the name of my blog.  The reason I fought through the hardest year of my life at the hardest job I could have imagined.  The reason I could never quit anything.  The reason I believe in inner strength- fortaleza interior, innere Stärke.   

My best friend has cystic fibrosis.  This is a terminal illness that has no cure.  The average lifespan for a person with cystic fibrosis is 37 years.  Nobody wants to think that their best friend is only going to be 37.  But my best friend is a fighter.  Every time her doctors have given her an estimate of her lifespan, she has laughed and far surpassed it.  She would only live to 3? Nope.  6? Ha.  10? Not her.  16?  Yeah right, this genius wants a Ph. D.  She kicked college's booty and is now in a Ph.D program.  So there.  

CF is a terrible, horrible, no good very bad illness.  It causes a buildup of abnormally thick mucus in the lungs, digestive tract and other parts of the body. CF impacts the lungs and the digestive system.  People with CF have a lot of trouble with coughing and breathing, and are highly susceptible to infections.  With regard to the digestive problems, CF makes it so patients can't absorb the nutrients they need from the food they eat- so people with CF have to take medicine to be able to grow or gain weight.  CF causes thick mucus in the respiratory tract, so people with CF often have a chronic cough, nasal problems, lung infections, etc.  As the chronic infections increase, in addition to the mucus building up within the lungs, lung function decreases.

Someone with CF fights a daily battle.  They have to take medicine every time they eat to help absorb the nutrients from the food.  They have to do morning and nighttime treatments to shake their lungs and loosen the mucus.  This takes hours a day out of daily life.  

But I have n e v e r heard my best friend complain.  She is the strongest, most happy, beautiful, loving, wonderful person I know. You would never believe this disease is attacking her body.  She does not let it define her, and I do not want to let it take her.  

She is the maid of honor in my wedding, and I could not be more honored.

Tonight my mom told me that a sweet little girl from my church at home in Maryland recently found out that she, too, has cystic fibrosis.  My heart is crushed.  Nobody should have to fight this battle.  
Her mother made this wonderful video, and I encourage you to set aside a few minutes and tissues (you will need them.  You won't leave dry eyed) to watch it.  

There has to be a cure.  Please join me to find it.  For Chrissy and Susannah, and for the thousands of others who should not have to suffer.

The Cystic Fibrosis Foundation is an amazing organization.  When they were founded in 1955, kids with CFF rarely survived elementary school.  Now, with large thanks to their HUGE fundraising efforts and efforts to find a cure, patients with CF often live to their 30's, 40's and beyond.  They provide the only funding for CF research.  

In 2012, the CF foundation raised almost $40 million for research to find a cure for cystic fibrosis.  But they need your help.  Please,  look and find a Great Strides walk or event near you and participate.  

We will beat this!


  1. Hello, dear one! I am your partner in the Bigs and LIttles and now that I stopped by, I know it was a total God-match. My sister has Cystic Fibrosis. Can you believe it? We have to facetime or something so we can really share about this. Your friend needs to be friends with my sister. She is a rock. Talk to you soon!

  2. what a touching post. I didn't know much about the disease and will definitely try to do my part. thank you for sharing, your friend seems wonderful : )