Breathe Bravely: Oh, the Places You Will Go

Time Square, NYC

Monaco

I love to travel. I love to experience new places, cultures, and people. I love the excitement of planning and packing for a new adventure. I love discovering the world beyond myself.

2 years ago I wouldn't think twice about hopping in the car or on a plane and jetting off on an adventure. I was a completely free spirit that loved to get lost in an unknown city, and lived to spend the day exploring and soaking up uncharted territory. I continually dreamed about the next trip abroad, a road trip over a long weekend, or a spontaneous adventure. I have experienced France, Germany, England, Italy, Austria, Spain, and several wonderful cities and states in the US. Today, I still endlessly dream of those trips, but am filled with so much trepidation, hesitation, and guilt.

My first thoughts no longer are, "what are the sights I am going to see?" "How many things can I experience in a single day?" "How can I really become a part of the culture?"

Today's first thoughts are, "where is the closest hospital in case something happens?" "What if I begin coughing up large amounts of blood and can't stop?" "How much can my body handle?" "Is the change in my environment going to make me sick or cause problems?"

Baggage

Madrid, Spain

No longer can I just jet away with minimal "baggage." No longer can I trust my body to be stable long enough through a vacation with minimal treatments. The single backpack I used to use for my excursions is now in addition to at least 3 other bags. My VEST alone is 31 lbs and luckily it comes with its own rolling bag. I then have an entire bag for all my medications and neb supplies: aka the "bag o' drugs." Also, some of my medications must remain refrigerated, so I have to have a small cooler and must think about accessibility to keeping it cold. Then comes my suitcase for clothes, and I am just as guilty as the next girl for overpacking. How am I going to manage all of these heavy bags? When we travel now, Mark so willingly takes care of carrying things to the car, into the hotel, back to the car, and up the stairs to our bedroom once we return home. He never thinks twice about making extra trips or carrying extra bags. I feel so guilty that our life has become so consumed by trying to keep me healthy, that we can never "get away" from CF. When I shed tears of disappointment and anger towards my body, he takes my hand or holds me tight and says, "it's ok. This is OUR life."

Madrid, Spain

Sitting or being immobile for extreme periods of time is hard on my body and lungs, but yet, after a day of pushing my body to its extreme it is drained and hurting. I am constantly trying to find that happy balance in each day between pushing my body to the max and knowing its limits: I want to squeeze every ounce of life out of each day. I can't waste a moment.

Privilege
I have been so privileged to have had the opportunity to travel so much in my 27 years, but I want more. I hunger for new uncharted adventures and spontaneous road trips. I want to leave and not think about where the closest hospital is and how long it would take me to get there. I don't want someone else to carry my bags. I want to climb the stairs of the Eiffel Tower, go skiing on the Alps, and bike through charming cities.

Switzerland

I have the greatest friends. They changed our vacation plans just for me. This summer we were excited to road trip out to Yellowstone National Park, but after talking about it with my doctors we decided it would not be a smart idea for me. There isn't a hospital close by, and the change in altitude could make breathing utterly miserable for me. Instead of sending me a postcard and bringing me a souvenir back, they completely changed their trip plans. We are now road tripping to the Porcupine Mountains in Michigan, with stops along the way in MN and WI. They changed their plans just for me. There's nothing I hate more than being the center of one's focus, let alone the reason for changing someone's exciting vacation plans, but I am so grateful. They are the greatest friends. I love them so dearly and cannot wait to make wonderful memories on our "Random Road Trip 2O14."

Our baby camper Palisades Park SD

More
I have tasted the world and I want more. Even if CF has to make the trip with me, I will not be stopped from seeing the world. Mark and I made the trip to Chicago yesterday and will be taking it all in for the next few days. Thank you to everyone who has made my travels near and far so beautiful. Love to you all.