A Spring Storm

As the warm rays of sun cast a gentle radiating warmth upon my cheeks I can’t help but think to myself, “we made it.”  I can feel the sting of tears at the corners of my eyes and I have to tip my head towards the sun to keep the tears from spilling down onto my cheeks. We had made it through winter. Spring had arrived early and I was wrapped within its promising warmth. Spring meant new life, a renewed hope, and an inner peace budding deep from within. Again, resounding within every part of my being were the words, “we made it.” And I believed and celebrated it whole-heartedly.

But I was reminded how quickly the seasons of CF can change. How quickly a spring snowstorm can suffocate spring’s hope – reminding the innocent new life of its unforgiving power. Today, winter’s fury is forbidding to relinquish its control to the peace of spring. Yesterday was a beautiful 60 degree spring day here in South Dakota. Today, we await an unforgiving wintery snowstorm.

Winter’s Song

Upon returning home Monday morning from a most beautiful extended trip to the beach, I had a full afternoon and night of teaching scheduled. Early that afternoon, I went into my studio to warm up and get myself organized for the voice lessons that lie ahead. But something felt different and off. I thought maybe it was because I literally hadn’t sung a note in ten days – the most time I’d taken away from singing in over a year. As I warmed up and sang through a few things, I noticed how quickly I’d run out of air and how difficult it was for me to finish phrases that just ten days ago were simple. Within me I could feel winter’s gentle, yet unforgiving snowfall beginning to drench my being.  As I taught and sang with my students the rest of the day and night, I noticed how starved of breath I felt and how my lungs burned to take in more air than they were allowed.

Tuesday morning between the normal adventures and opportunities that fill my life, I made a visit to my clinic to do a quick lung function test (PFT) - just wanting to check-in and see if there was any cause for concern. I was reminded of the unrelenting presence of winter amidst the beauty of spring. In just two weeks since my last PFT my lung function had dropped 10% to a FEV1 of 40%. So, Penny was called upon. Aggressively, both IV and oral antibiotics were started. The words “we made it” wept silently from the deepest parts of my soul. Disappointment threatened to replace spring’s eternal hope. Disappointment in myself and a disappointment and sadness I feared to see reflected in the faces of those I love. But within that disappointment is still something to be grateful for – I made it five months without IV antibiotics. That’s the longest I’ve gone consecutively in over 3 years. That is truly something to celebrate.

The Hope of Spring

This winter storm’s snow will melt into the earth, disappearing beneath the spring’s powerful sun and renewing warmth. This “storm of CF” will melt away. Today’s snow will give life to the most beautiful of springs. The seasons of CF will always change and its storms will rage but the hope of spring will dwell eternally within me, always waiting to be enlivened by spring’s warmth.

Amidst the pains of CF is the deepest gratitude and love for my CF Team. I am so thankful for each of them - their genuine care, guidance, strength, and reminding me that I’m never alone in this journey.  I'm grateful for my deep love of singing and the gift it gives me to combat CF and know when something is off. I'm grateful for each of you and the beauty of spring you each reflect into my life. Love to you all.

Think spring. 

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! 

Invisible

Cystic Fibrosis is considered an invisible disease, yet it is anything but.  Meaning, I look perfectly healthy to the unknowing eye, while silently a battle within rages.  CF may be concealed beneath the façade of my body, conveniently hidden from the world around me, but underneath it all it is a relentless disease trying its best to undermine me from within: trying to silently steal every breath.

I've spent a majority of my life keeping any signs of CF concealed from the world around me: hiding my dark eyes and pale skin beneath pounds of makeup, wearing clothes to hide my barreled chest, being conscious of how much I am coughing in public, wearing long sleeves to hide a PICC line, and mindfully deflecting attention from myself in hopes of protecting the ones I love from the realities of CF.   CF may seem invisible to the untrained eye, but it is not.  It's a silent, yet deadly force that affects the lives of so many in my life.

What Lies Beneath

As my CF progresses, it is becoming more and more difficult to conceal.  It may be still invisible to most of the world, but as I look in the mirror, it's anything but invisible. I see CF peering back at me through my own tired, sunken eyes.  I see it in the eyes and faces of the people close to me: a tinderbox of emotion bursting within the silence of their gaze.  I fear that they can see straight into me as our eyes meet. I fear they can see the mess of emotion churning within me, the exhaustion, the relentless war reeking havoc within: that my body is betraying me.  But most of all, I fear they will see how weak I truly am.  

This morning things are as usual: I will go out into the world with makeup carefully painted upon my face to hide the exhaustion that darkens my eyes and paleness of my skin.  The world will see me as healthy, never hovering for a minute on the thought that each breath I am given is such a gift.  CF will be invisible.  

But this afternoon I will walk through the doors of the hospital and be embraced by people I so greatly love and trust with my life.  People who see and know the invisible side of me: my CF Team. People who work so tirelessly to give me another tomorrow, who so endlessly support me every day in every part of my life.  People who help pick up the pieces as I continually try to max out every ounce of life.  My Team never gives up hope.  For each of them, I will always be so truly grateful. 

So, with the guidance of my CF Team, I will be undergoing sinus surgery and a bronchoscopy this afternoon.  I shall be having a bit of an "inpatient retreat" as we monitor my lungs post anesthesia and post surgery. 

My Beautiful Life

It still seems unbelievable to me at times, that my body is literally silently destroying itself from within.  For the most part, my reflection tells me there can't be anything possibly wrong, or if I see any signs of CF, I do my best to simply cover them up.  If it is invisible to the world and to myself it doesn't exist, right? But when I am faced with the images of what lie beneath this façade, the pain, and signs of sheer exhaustion, I am forced to know a different truth.  Invisible or not, I will always have hope that it someday will be completely invisible. 

This morning I will put a smile on my face, be grateful for every moment, every person, and every breath life has granted me.  I am grateful for the life I have been given: the visible and invisible.  Today is just another part of my beautiful journey.  Love to you all. 

What is "invisible" in your life?

Going the Distance

If you would have told me a year ago, 6 months ago, or even 9 weeks ago I would be lacing up my running shoes 3 times a week religiously and running, I would have laughed in utter disbelief.  Deep inside there would have been no greater wish: the wish to step outside and run.   To breathe in the air around me while one foot after another painted the pavement with steps was literally a dream.

It was something I thought was never going to happen again.  It was something my mind easily thought I could do, but my body forbid.  With any distress my my body was screaming for oxygen.  Every cell was burning with starvation, and as much as I tried to drink in oxygen my body could not take a deep enough breath to squelch its hunger.  How could I possibly think of running when just 3 months ago I could barely walk up the stairs without gasping for air?

Track Days

Life is pretty miraculous.  The moment I blew a 55% in July, I promised myself I would do even more to fight CF and its ever increasing hold on my life.  I knew again, CF would come at me with a vengeance, and when that happened my body was going to be stronger than ever.  What did I do? I dug my running shoes out of the closet.  I knew this was going to be a long road, and a difficult one.  What my mind wanted me to do and what my body would allow, would be two different things.  I also come from a family of very good track sprinters, which would be a natural tendency I have always battled.  I knew 100 meters wasn't going to build the strength or endurance I needed to fight my future battles, I needed to be able to go the distance.  I needed to start slow and remain steady.

Road Blocks
I knew this wasn't going to be easy.  There were lots of things I had to consider; the first being my blood oxygen level.  With vigorous, steady activity my oxygen level has a tendency to drop below 90 causing Hypoxia: low blood oxygen.  Side effects of Hypoxia are things such as light headedness, headaches, fatigue, nausea, and confusion.  So, what did I do? I bought an oximeter to monitor my SAT level when I would run.  I needed to know how low it was dropping and how far I could push my body before something dangerous happened. The first couple weeks of running my oxygen level would drop to around 82-84, but now in the last 2 weeks it hasn't dropped below 89. The second thing I needed to consider was just how far to push my body.  Pushing it too far would result in exhaustion which could bring on an exacerbation and start a downward spiral.  Finding the balance between pushing myself and exhaustion has always been difficult for me, and this was going to be no exception.  Especially, when I would be adding it on top of my teaching and gradate school schedules.  Third, I needed to make a plan.   With the help of a fellow CFer, I had a plan in which I could begin to tackle, one step at a time.


Now or Never. 
So, I did it.  I knew it was now or never.  I laced up my shoes, grabbed my oximeter, and charted my course.  Did my lungs and body protest with every step? Did it hurt like hell? Yes, but I knew with every labored breath I was alive.  It may have only been 30 seconds, but it felt like a marathon.  And when I finished my first day of walking 8 minutes/walking 30 seconds three times I felt like I had conquered death.  I felt as if CF had lost the battle.  Tears streamed down my face as I thought I would never experience running again.  Today, I am up to running 60 seconds straight three times, with 4 minutes of walking in between.  It's taking far longer than I ever imagined for my body to work up endurance and stamina, but it's a journey in which I must master patience. This isn't a sprint, it's about going the distance.  I continue to push myself while trying to keep from exhausting myself.  The longest I've done? 1 minute 20 seconds continuous.  I know some might be laughing at that, but to me it's utterly beautiful.  It's a miracle.  To be honest, some days feel pretty good and I feel nothing could stop me, and then some days feel pretty terrible and my body screams with every fiber of its being at me to stop. But each day is such a gift.  I am running.  With every step I am fighting.

I know there will come a day again when I won't be able to run, that my body will forbid it.  It might be tomorrow, but today is not the day.  Even while battling a terrible cold, and lungs that seem to be protesting every breath I take, I will run today.  The best part of running? The cheering squad that greets me at the door. With every breath that touches my lips and fills my lungs, I am thankful. Love to you all.

Let's go running together.  Seriously.

The Best Medicine

My stomach hurts.  I can't catch my breath.  I am gasping for air.  Tears stream down my cheeks. My body shakes.  What's happening to me? Laughter has filled every part of me with a side splitting uncontrollable case of the giggles. You know the feeling.

Laughter.  It can do so much for your soul, your mood, and the outlook you have on life. It can break barriers, create new memories, and it can be the catalyst in forging new relationships. Laughter is a miraculous thing.

Why don't we allow ourselves to laugh more? It doesn't have to be the uncontrollable, full body, ab cramping laughter. It can be a simple silent giggle beneath our breath or an innocent smile we can't seem to repress.  We all have something, whether it be a specific memory, event, friend, picture, comedic movie or television show, or funny cat video that can bring a hearty laugh to our lips or just make our soul smile.  Whatever it may be, they all comfort the soul with renewing joy.

I love to see people laugh: it shows me they're happy.  Laughter and happiness are contagious.  Have you ever tried to remain somber while someone is having a complete laughing attack? It's nearly impossible, and you can't help but be sucked in by their happiness.  Joyous laughter is a powerful force of good.

Weight of the World
The seriousness of life and the somber realities that surround us can fill us with anxiety, worry, and  leave us feeling despondent.  Laughter that once so easily danced on each breath, is now replaced by sighs of worry and melancholy.  Suddenly, it feels as if the weight of the world is bearing down on our shoulders. We become serious, pensive, and sometimes cold.  The world around us
seems to have stolen any laughter that lived within us: it can only be heard in the echoes of our memories.

I haven't laughed as much as I have this week in a long time.  I almost forgot how much I love to laugh and how powerful it can be.  When life gets busy, when life confronts us with serious issues, or when we become lost among life's noise and regimen, there seems to be no room or time for such lighthearted folly.  In the serious and sometimes painful world we live in, we can feel as if laughter is a form of betrayal.  That laughter means we don't care, appreciate, or understand the magnitude of each breath we are given.  It is quite the contrary, however.  Laughter reminds us that we are alive, we are breathing, and that there is joy that lives within each of us.

Every day my life is surrounded by treatments, a cocktail of pills, IV antibiotics, trips to the clinic, and the weight of the future.  My life is consumed by the rigid schedule I must dedicate myself to ever day: my soul becoming so exhausted by the realities that have become my life. My mind becomes heavy and serious, evicting lighthearted thoughts and smoldering the embers of joy that were born ignited by laughter.

The Best Medicine
While it may be the treatments, drug regimens, and my CF team that help keep me breathing, it's the joy and laughter in my life that makes me feel most alive. It is truly the best medicine. Whether it is just a small giggle, an uncontrollable smirk, or a laugh so intense that makes my lungs scream for air: they each fill and renew my soul with happiness. I also find no greater joy than making other people laugh or making them smile: it selfishly renews my soul.

There is a time for tears, a time to be stoic, and a time for taking life seriously. But there is also a time for joy, a time for carefree happiness, and a time for laughter.


Take a few moments today and just laugh: it's good for your soul. 

Fight2Breathe

Today's blog is dedicated to an incredible individual by the name of Caleigh Haber.  I stumbled across her story last November to which I am so grateful.  Her exuberant spirit in every breath, her positivity, and fearlessness have become a part of my every day life.  She has shown me what beauty and strength look like through the eyes of CF.  She has helped me realize that I do not need to pretend anymore.  That CF includes all of me, and it makes me just as beautiful in my own way. 

Caleigh is a beautiful 23 year old from San Francisco, CA who also has Cystic Fibrosis. She is currently awaiting the call for a double lung transplant.  Just a glimpse at her blog, Facebook, or Instagram gives the world a glimpse into her passionate will to breathe bravely. 

 Please enjoy her beautiful journey:
"When I think of my journey leading up to this point of needing a double lung transplant to survive, it is similar to the process of making a warm chocolate soufflé; I've made this dozens of times in the several kitchens I have been blessed to work in. I, as well as the soufflé, start as an egg. We both enter into life with goals. Mine: to be a good person, make myself proud, be a great athlete, become a pastry chef and defy the odds of Cystic Fibrosis. The soufflé: to rise.

As our journeys proceed, we beat hard, whisking away like egg whites, working hard to develop into its purpose. I joined gymnastics and cheerleading at a young age and competed at a professional level, until moving to San Francisco to pursue my biggest dream of becoming a chef at the Le Cordon Bleu. Along the way there were set backs putting me in the hospital, but that only drove me to work harder at accomplishing a degree. I interned before and after the program, absorbing every bit of knowledge I could. Like a mise en place (for all you non-chefs mise en place is the meaning for “putting in place”. It is refers to the preparation before production begins), I gathered my skills instead of my ingredients, working sometimes 13 plus hours a day on top of my medical regimen. But, I wouldn't wish for one second of the experience to be gone. Waking up when it was still dark out to do my breathing treatments and staying up way past the point of exhaustion to be sure I was getting enough calories for the day, was worth every second in the kitchen.

After my externship, I began working as a pastry cook. The adrenaline and excitement of the fast paced kitchen brought me such passion that I would go home unable to sleep, waiting to get back into the kitchen. The feeling of accomplishment that the culinary environment would bring me while working is unimaginable to a non-foodie. Creativity, texture, temperature, taste; all the things my chefs in school would look for. Those are the things as time went by that forced me to strive increasingly harder to be the best I could.

With so much happening in my life personally and professionally, I had reached my peak. I had all the love, support and energy around me, similar to the chocolate and sugar whipping vivaciously around the yolks. Then all at once the whisk was snatched from the copper mixing bowl, and just like that I lost control of the souffles journey, my own journey as well. The feelings now are peaked whites, sugar, yolks, and chocolate in a bowl slowly being folded to combine into the next step. The ramekins are ready with sugared edges, uniform to my own career, waiting for my talent to grow. In the meantime, I'm in a bowl trapped. This disease is present but I am not powerless, it is gripping but I am brave. Though it is surely the most frightening and unsure roller coaster of my life- I am making the conscience choice to take the very front seat because I can endure and fight. My struggle makes me who I am. I take this invisible disease; naked to the uninformed eye for what it is and let it be. Now it's time with your support to enjoy life with all that it comes. To embrace the experiences and capture the moments, whatever they may be and fight through it. I've known pain, struggle, and defeat that others will never have to experience, nor should anyone. Cystic Fibrosis has made me the friend, sister, daughter, who I am today- I have accomplished many goals, but I am not finished yet, not even close." [words by Caleigh Haber]

A Love for Life
In just the 6 quick months I have been following Caleigh and her story, she has battled blood clots, blood infection, G.I. issues, CFRD [CF related Diabetes], and many unyielding effects associated with end stage lung disease. Yet, she has a love for life that is intoxicating. Many days, her posts seem as if it were my own voice being reflected on the page in front of me: dreams of the future, a thirst for life, and making every breath memorable with people so dear.  Thank you so much Caleigh.  Love to you all.

Please follow her journey to transplant with end stage CF and consider donating to her fight. 
Website & Donate: http://fight2breathe.org/
Facebook: https://www.facebook.com/fight2breathe
Instagram: http://instagram.com/fight2breathe


What is your soufflé of life?

Drawing Straws

The biggest endeavor in life is enacting the art of empathy: to show we care or understand something beyond ourselves. There is no greater feeling in life than being truly "heard" or feeling like you have been there for someone in both times of laughter or tears.

The Question

A frequent question and one I know is on the minds of many is "what does CF feel like?" or "Does it hurt?" 

The answer? I don't know any different. I take whatever my body has to give me every day and use it to its fullest potential.  I just imagine everyone has to think about breathing, that their body is stiff and aching in the morning, or that it takes time for everyone's lungs to "warm up" for the day.  I assume everyone has days where they feel great and days their body feels like a prison. The only way I can liken it to something you might understand is to the feeling of a chest cold, or when your body aches from being cold or having the flu, or that your lungs are like wet towels being wrung out.  This is my beautiful life though, and it's the only one I get.  There are moments my body lets me completely forget that I have CF. Those days are utterly blissful and I revel in them, pushing my body to the max knowing tomorrow may betray me and force me to feel every part of CF.  Each day may be different, but one thing remains the same: each is a gift filled with one more beautiful breath.

Challenge

While there is no way for anyone to know what it truly feels like to be another person, I have a CF challenge for you.  This idea was posted on the Cystic Fibrosis Foundation website. 

I had Mark try this challenge [he has lungs of steel] and the following is based on his observations: 

Warning: at any time you feel light headed or extreme discomfort, STOP!

1. Find a medium sized drinking straw [a flexible straw you buy in packs at the grocery store, not a McDonald's straw].

2. Plug your nose and breathe through the straw for 6O seconds. 

A few seconds in you might not think it's so bad, but then around 25 seconds you begin to consciously think about the air pouring into your lungs.  Then around 35 seconds you wonder if it's almost over.  By 6O seconds your lungs are beginning to panic a bit and scream to be released from such bondage.  But people with CF don't get to stop: it's why each breath seems so valuable.  Some days it feels like it takes everything just to breathe. Because it does. 

*If you are up for a challenge climb the stairs, walk up and down the aisles of the grocery store, or just put dishes away from the dishwasher while breathing through the straw. *

I want a life filled with breaths used to their fullest potential.  I want each of them to be encompassed by empathy for those around me: for people to know how much I care about them.  Think about your week.  Who made you feel loved and appreciated? Who listened? Thank you to all who listen, give endless love, and share yourselves selflessly with me.  Love to you all. 

Today is a brand new day.  How can you master the art of empathy?  

The Battle

What does hope look like? 
Let me show you:

Hope is your genuine smiles, your compassion, your comments, your love and support.  It's your passion for each breath and living each day to its fullest potential.  It's telling somehow how much you care about them, appreciating them, and it's realizing how beautiful they make your life.  Hope is knowing that each breath is a true gift.

Thank you each for wearing purple!  I am so grateful for the pictures sent, messages shared, emails, FB posts, and text messages.  I was truly brought to tears by each one: you all are so very incredible.


The Delicate Balance of Infection

European Satchel Time

With progressing CF my lungs are always permeated with infection; the real battle is not in eradicating it, but in keeping it from completely taking over.   The bacteria becomes so complex and resistant that each infection becomes more and more difficult to combat.  I always have an infection, it just depends if it's running rampant or being held at bay.

 My lungs culture a type of bacteria called Pseudomonas aeruginosa and a fungus called Aspergillus.  A healthy body's natural defense system and working lungs can keep the bacteria and fungus from making a home and ruthlessly taking over, however, my sticky inflamed lungs are a perfect camp for bacteria and fungus to flourish.  Pseudomonas is an ever changing bacteria that becomes highly resistant to the ammunition being fired its way.   CF research and new drug development is so critical to the future of CF because of the high level of resistance to antibiotics the bacteria develops.  As CF progresses, antibiotics that once annihilated the enemy now seem powerless.  Pseudomonas is treated both with oral antibiotics, IV antibiotics, and inhaled antibiotics.  Aspergillus is treated with oral anti-fungals.  All come with the hoped benefit of minimizing the infection, but they also come with some wicked side effects.  Mentally, physically, and emotionally I can fight: hopeful for an extra breath of life.


How do we fight?  We fight physically, mentally, emotionally, and with hope.  We throw everything we've got against the prevalent infections: fighting them until they are more tired than we, trying everything we can to add a few breaths.  


PICC'd and Ready to Fight
My new PICC is in, my "European Satchel" is again my best friend, and I have an entire army behind me fighting.  Life is a beautiful battle for us all.  Within each battle there still lies hope.  Hope for the future, for dreams, for sweet memories, for blissful breathe easy days.  What is the most amazing part of fighting this beautiful battle? The people who stand next to you through it all.  Love to you all.


What hope lies within your battles?

Junkin'

Junkin' 

One of my very favorite things to do is to go "junking."  What is that you ask?  It's just another way to say "antiquing."  Some people think of it as junk, antiques, or old rubbish, but  I think they're all treasures in their own way.  I love to go into a shop filled from wall to wall with "treasures."  Each item has a story to tell, a history just waiting to be revealed.  Look around yourself, what stories are being told?



My Story
My lungs have a story to tell all their own.  They are filled with the history of each breath I have taken: the laughter, the conversations had, the air of cities traveled, the tears cried, and the scars of infection caused by CF.






The Scars
With every lung infection, scarring and damage to the lungs occur.  Scarred tissue in the lungs makes it more difficult for the lungs to function properly. The thickened mucus caused by CF coupled with the continued scarring and damage to the lungs is a breeding ground for bacteria and infection.   X-Rays and CT Scans are done in order to chart the progress of scarring and damage to the lungs: they help tell the story.  They can also show mucus plugging, bleeding issues, and the presence of a pneumothorax.

A Pneumothorax is a collapsed lung. This happens when air leaks into the space between your lungs and chest wall.  The size of Pneumothorax can vary.  A small incident will be closely monitored and hopefully heal on its own, but a larger incident requires a tube or needle to be inserted between the ribs to remove any excess air.  This past summer I had a Pnuemothorax.  My CF Team monitored me closely and it healed on its own.  The chances of another increase greatly once one has occurred and deterioration of the lungs continues to progress.

Stories waiting to be told.

Yet to be written...
My lungs may be filled with the scars left by CF, but they are just part of my story. Each breath I have taken is filled with beautiful memories, relationships, and stories. Each breath I exhale reveals the story living within me, and gives hope to my story yet to be written.  Thanks to you all for being such "treasures" in my life.  Love to you all.





What "treasures" fill your life?