Day 3 - Breathe Bravely Challenge

Finding beauty in every breath. 

Cystic Fibrosis is an ugly disease, but I strive to find the beauty in every breath I am given. This year I will spend roughly 850+ hours doing VEST treatments: 3-4 treatments every day at about 40 minutes per treatment. These treatments involve inhaling nebulized aerosols (4 medications) and my VEST (a vest that inflates with air and shakes at progressing high frequencies). Treatments help break up the mucus clogging my airways where bacteria and infection love to live.  As CF progresses, the higher the need becomes for more treatments during the day.

I spend 2 + hours every day doing treatments: fueling the deep hope that lives within every breath I take at the chance of more beautiful tomorrows. 

I am so thankful for every lifesaving treatment that has given me another day. Another day to love, to hope, to sing, to make memories, to laugh, and to breathe bravely: each is truly a gift. Love to all. 

Hope is a beautiful thing. 

Become a part of the Breathe Bravely 60 day challenge. 

Take a moment every day and capture the beauty that fills every breath.

1. Capture a beautiful moment every day for 60 days.

2. Each day share your picture with us: 

          Facebook - Ashley Ballou-Bonnema

          Instagram - breathe.bravely

          Twitter - @breathebravely

3. Add the hashtag #breathebravely60 to your post and tag Breathe Bravely in your photo! 

Pack Your Brave

Passport? Check.
Tickets?  Check.
Sunglasses? Check.
Sunscreen?  Check.
Enough clothes for a week's worth of all weather scenarios?  Check.... well, maybe I better grab another sweatshirt.  Wait... it won't fit. [story of my life]
Toothbrush, shampoo, hair brush?  Triple Check.
Contact case, solution, glasses?  Check.
What am I forgetting?

No Escape
Vacation.  It's such a glorious thing. There is so much to look forward to, to plan, and to dream about. How will we utilize every moment to its fullest potential? Each second is bursting with possibility.  We look forward to embarking on new adventures, to a time of renewal, and to breaking the cycle of chaos that consumes our busied lives.  Whether these adventures transport our body or merely our mind, they are a means to escape and a way to forget about the realities that lie amidst our normal, chaos filled, every day lives.

But what if what you'd love to escape from most followed you not only on vacation, but everywhere you went?  What if there was absolutely no escaping from it mentally or physically? What if forgetting about it was a matter of life or death?

To Seize the Day
My summer was alive with many adventures, both great and small. Mental vacations and grand road trips filled my days: each incredibly miraculous. I seized every glorious moment to try and escape from the realities that are my life.  The reality I'd love nothing more than to take a vacation from? CF.  Just a week. A month. A day...

Just a few short years ago I wouldn't think twice about taking a "vacation" from CF: pretending it didn't exist, mentally and physically pushing any sign of CF out of my life. I honestly believed, if I couldn't see it, no one else could either.  I was embarrassed, ashamed, and disgusted with the mere thought of

anyone seeing what CF could do to me.  How it made me a slave to tubing, machines, nebulizers, and endless amounts of pills. What would they think of me? Would they see how weak I really am?

When going on vacation or just visiting friends for the weekend I would panic. I still get a sick feeling in my stomach thinking about it.  Where and when will I do meds? Who will see me?  What will they think of me?  Will they be disgusted?  How will it make them feel? At home I can go in my little med room, shut the door and the world out from who I am.  I can emerge, leaving any sign of CF in that room and concealed beneath my well practiced physical and mental make up. But what happens when I can't hide myself away in my little room? When I can't merely leave CF behind closed doors to embark on an adventure?  When my daily life revolves around 3 treatments?

 No longer can I just merely take a "vacation" from CF.  No longer can I leave CF at home and escape away to a great adventure.  I know that.  I have worked so hard and fought tirelessly to get where I am today: I can't let my guard down even for a moment. Missing treatments can start a downward spiral: stealing months or years away from me.

I have come to the crossroads in which I have had to decide to either chain myself to my little black chair and little med room, or bring CF out into the world with me.  To be honest, the little black chair and my little med room get mighty lonely.  Imagine being confined and chained to the very thing that is a constant reminder of what is trying to killing you: a reminder that you are in a constant fight for just one more breath.

Decisions
Only a few people have ever seen me do my treatments.  I've been so protective of it all my life.  So much that I wouldn't even tell the closest people in my life that I was in the hospital, just so there was no way of them coming to visit.  Why didn't I want them to visit? I didn't want to risk them seeing me in a less than perfect state, to be the center of a pity party, or make them feel uncomfortable. I know, it sounds silly.

This summer I had a decision to make.  Do I spend my summer confined to my little black chair and med room just so I can continue to conceal CF from the world? Or do I bring CF out into the world with me, and live unashamed of the realities that are my beautiful life?  If I wanted to explore the world around me, eat up every moment life was willing to offer, and live life to its fullest potential, I had no choice but to pack up my little med room and take it with me for the world to see.  I must bravely bear it all: all the good, the ugly, and beautiful. This summer I've done treatments in a tent next to the shore of Lake Superior and the badlands of South Dakota, in hotel rooms in Chicago and Minneapolis, in cabins and B&B's in northern Minnesota, and in our baby camper next to the Missouri River.


Have my dearest of friends seen me? Yes. Does it still bother me that they've had to see me in such a way? Yes, but it's who I am.  It's part of my beautiful life.

CF doesn't take a vacation from destroying my body, so neither can I in the fight against it.  It truly is a matter of choosing life or death, and I choose to live.  I choose to breathe bravely.

Vest? Check.
Nebs?  Check.
Meds and Pills? Check and check.
Bravery? Check.

I am packed and ready.   Let's go on vacation. Love to you all.

Be brave today: don't hide your beautiful self from the world. 

Rise & Shine

Listen.  Do you hear it? It's the sound of a beautiful new day beginning.

Everyone has their normal routine they live by, whether it be consciously set or not.  Think of your morning.  Do you drink coffee first and then shower? Or do you check your email, shower, eat breakfast?

Your routine doesn't stop there though! It continues on throughout your day until the fresh beginning of tomorrow morning's sunrise.

Have you thought through your daily routine? Now try adding this into your usual routine of work, school, and family: set your alarm for 45 minutes earlier, set aside 45 minutes in your late afternoon, and carve out 45 minutes before you go to bed.  How would that impact your day?

My day begins in my little black chair doing a VEST treatment and Nebs.  Most mornings I would love to stay in bed for that extra 45 minutes, but I know CF doesn't take a day off, so either can I.

What is the VEST?

The VEST is an airway clearance device that uses High-Frequency Chest Wall Oscillation [mini-coughs] to dislodge mucus from the bronchial walls in hopes that the mucus will be easier to clear.  Mucus settled deep in the airways is a breeding ground for infection, thus making the mobilization of mucus so important to maintaining the progression of CF.

Say What? I know, it's hard to explain.

Imagine wearing a life jacket that fills with air and shakes up to 25 times per second for 3O minutes straight.  One might think, "that would be a great time to read, write, or do homework." Sadly, I have not mastered the art of reading and writing while being shaken so vigorously.

Nebs

Inhaled nebs are another crucial part of my CF regimen.  Four different inhaled nebs accompany each VEST treatment, taking about 45 minutes for completion each time.

   -Bronchodilator: Opens up airways

   -2 types of Mucolytics: Thins mucus

   -Antibiotics: Fights CF bacteria and infection

A date with my little black chair.

Full days mean neb treatments in the car

As Cystic Fibrosis progresses so does the need for more treatments during the day.   Currently I do 3 treatments a day for a total of 2 + hours a day spent in my little black chair.   During times of exacerbation and infection, more VEST and neb treatments are necessary. As time rolls around for my next treatment, my lungs are usually craving a good shaking.  I am not going to lie, sometimes I feel like I am chained to that chair, but I know it's helping to keep me alive.

Today is going to be a very full, but beautiful day, so I must rise and shine!  Today is another day I get to breath.

What do you rise and shine for in the morning?