Filtering by Tag: Real 65

Real Gratitude 65 : Brotherly Love

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for each brother, sister, and friend impacted by CF. For their endless hope, drive, and unwavering support we are so very grateful.
 

CF doesn't just impact a single person in a family, it impacts every person and part of a family. Today's post is a meaningful entry written by brother, Steve Sveom, in honor of his sister, Chyrstal, who has cystic fibrosis. Read his heartfelt words that genuinely reflect the strength and awe he admires in his sister!

 

Brother Love

"Chrystal Marie is my little sister, but in many ways, I feel like I look up to her. We spent alot of time together growing up, and apart from the manual back percussions that I would help my dad with on her back, Chrystal was just as active as most every other kid on the block. This was before internet, so we played outside alot. We lived in Sturgeon Bay, Wisconsin, and many afternoons were spent playing at the park and then heading to the beach for a swim. I did not think of Chrystal as anything less than my little sister. Chrystal and I went to high school at the same school, and even though I was a little older, and spent alot of time screwing around and playing sports, I tried my best to be a good big brother. Chrystal had many friends in school, and people were, and still are, drawn to her inner strength and outspoken spirit.

After she met and married Lucas, things were a little different, just like they are for all of us after high school and college. Chrystal and Lucas had a life to build together,  and they intended to live it to the fullest. Chrystal has had to focus more on her health during much of that time, but thankfully, with Lucas' help and encouragement, and also the amazing medical advances in therapy machines and medications, they have been happily married for almost twenty years. Their lives have been blessed beyond words with the birth of their daughter, Hadassah Joy, in May of 2013.

Chrystal has always been an inspiration to me. I see her strong will to fight, and to live each day to the fullest boldly. Her faith and her family, Lucas, Hadassah and many other family and friends, all look at Chrystal as a person who has learned to live free of the bonds that CF would want to restrain her to. Chrystal has chosen to live and breathe boldly, 365. I love my sister very much, and I am proud to be her little, um, big brother!"

 

Written and submitted by Steve Sveom.

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real Gratitude 65 : What Would It Mean?

The month of November on Breathe 3-65 is dedicated to GRATITUDE. Today we are grateful for all the moms and dads who show endless amounts of tenacity and strength in the fight against CF. For their endless hope, drive, and unwavering support we are so very grateful.


Today's guest entry is written by a mother that embodies what it means to be strong, tenacious, and hopeful. Billie is the mother of two brave and energetic girls who have CF. Billie, like all other parents, wishes for nothing more than a cure for her beautiful girls. What would a cure to CF mean to Billie? Read her powerful words in today's Real 65. 

What Would It Mean?

"Rylie came home from kindergarten last week and told me that a kid at school punched her during lunch. A rocket list of questions ensued from my mouth - who? when? has it happened before? did you tell someone? On this particular occasion, by “punch” our occasionally overly dramatic 5 year old meant “accidentally elbowed”.

Nonetheless, that feeling I had when I first thought she might be the target of a bully was familiar. It’s one of the rubber bands in this massive ball of emotions that comes from parenting daughters who deal with the everyday challenges of a rare, genetic disease. I’ve never crossed paths with such an unfair and unrelenting bully as I have with cystic fibrosis.

    It’s the kind that makes my kindergartner go to the back of the line every day at lunch.

    The kind that sprays stuff up my 3 year old’s nose.

    The kind that seeks to shake my daughters every day, with no exception.

And, like most bullies, there are feelings of helplessness. I can work with her school, but I can not change the fact that the pills are necessary. I can teach her how to do her treatments and medications for herself, but sprays up the nose and shaking for hours and inhaling medicine and swallowing dozens of pills is never going to be enjoyable. Bullies like to take control, and so that becomes our mission. To slowly and carefully and intentionally give our daughters a little more say in the how and the when of their treatments and medications. The bully is still going to make them shake and they might feel beat up at times, but giving them the tools they need to take ownership of their disease is currently our best method of defense.

A cure for cystic fibrosis would mean to one day be able to make a call and the bullying stops, to fill a prescription and the bullying stops, to drive to an appointment and it stops. I wouldn’t have to to send her to school wondering if the bully would be particularly mean that day. None of this lurking around on healthy days, looking for a weak moment to strike. No more changing plans or missing out or feeling embarrassed. The bully wouldn’t be waiting at home, or at school, or on vacation or at grandma’s.

    The bully would be gone.

    That’s what a cure would mean to me."

 

 

 

-    About Today's Contributor   - 


Billie, along with her husband Ryan, are tireless advocates for their girls and the CF community. To follow Alexa and Rylie's journey with CF and read more of Billie's powerful words follow her blog "2 Sisters 1 Cure."

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : A Never-ending Love

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories. 

 

It is a great honor to share today's Real 65 with each of you. It is an honest portrayal of the heartbreaking impact of cystic fibrosis while a beautiful reflection of a person who touched so many lives and continues to. Jessica was an incredible woman with a special zest for life. Her husband, Heybo, reminds us all how precious time is with those we love, how quickly life can change, and the merciless truths of CF. Here is Jessica's story told through the life-changing words of her husband, Heybo:

"Cystic Fibrosis is the illness that took the life of my wife, Jessica. I was married to a wonderful women for 16 years and we were together for 19. I don’t know everything about CF, but I have a good idea about what it is and how it affects the lives of those who love someone with CF. I feel sadness now that “Jay” is gone. I think back to when we met, the times we had together full of smiles and laughter.

When I met Jessica she was lively and outgoing. I knew I had to get to know her. I thought to myself, “here is a woman who stands 5ft 4inches tall full of energy. It is going to be tough keeping up with her.” As the years passed, the more I fell in love with her. Man I miss her.

Jessica shared stories with me about her years growing up. Stories about her surgeries to have some of her intestines removed as a baby because of digestive problems and her parents being told she would be lucky to see the age of 2. I wanted to know everything about her. Through everything she went though the only thing that came to my mind was wondering how she does it- the IVs, portacaths, and surgeries. I thought, “how does someone go through getting poked with needles and being in the hospital so much and still have a bubbly attitude?” One thing I learned is if you tell her she can’t, she will to prove you wrong. A lesson I learned through the years. I came to see what she went through.

We were married in 1999. I began to learn everything I could about her CF, the medications she was taking, the treatments, how often she needed to do treatments, everything I needed to know to be her spokesperson. My knowledge became critical during her final weeks. She shared with me her desires about her health care, what and how she wanted to be cared for while in the hospital if she wasn’t able to speak for herself. We made the best partners.

I will never meet anyone so loving and willing again. For the last 15 years or so of her life we traveled a lot. She loved to live life and not being cooped up. One thing she always said was, “I’m not going to let CF ruin my life.” And she didn’t. I think we both knew that she was slowing down a bit, but she would never tell you. She taught me a lot in our 19years together. So much I couldn’t begin to explain. She loved to go to Arizona and visit family. She always dreamed of the day she could go without her treatments, or at least a weekend without doing them. This dream was never realized.

We would go to Arizona for the winter, for a couple of weeks or even a month. She was very tired of the cold, so we went for the whole winter this year with a trip back home only for Christmas. In February things started to take a turn for the worse. Jay was getting more short of breath. One Saturday morning she woke up with a fever. We waited till Monday to see if she could kick it. She was even worse on Monday so we went to a walk in clinic and she was told she had the flu.

As the days went on she could hardly walk without stopping to catch her breath. We went to the emergency room in Arizona. “Jay” was hurting badly. We decided to leave and head back home where she could see her doctor. I packed as she sat and watched, every breath she took hurt. I drove and she would try to sleep, not with any success. Every rest stop we stopped at I would carry her to the door of the restroom and then back to the pickup. The pain I felt, not from carrying her, but the sadness I felt from helplessness. Watching her tore me apart. We made it passed Denver and she looked at me and said “I can’t breathe!” We came upon Ft. Morgan, CO and an exit for a hospital. I immediately stopped. She was scared, and so was I. They put her out, the last she was able to talk with me for a couple of weeks. After consulting with a doctor, he said she needed to be flown to Sioux Falls. She was taken to the airport and flown to Sioux Falls. I had to drive the 12 hours with our baby, Sedona, a 15-month-old MaltiPoo. Anyone who knows me knows I don’t show a lot of emotion, but when I got in my pickup I cried. It was the longest and saddest drive I have ever done and when I finally arrived to Sioux Falls and saw all the tubes coming out of her I lost it. There was my best friend, lying there and I couldn’t do a damn thing. I couldn’t protect her anymore and it tore me apart. Jay was in the critical care unit.

The first week went by, everyday was tough, touch and go. Her mom and I had to sit down and talk about everything. One thing I should say is Jay was very close to her mom and I would of never make decisions without her. That first week was really tough. Jay was heavily sedated and her kidneys were not working. She was hooked up to a dialysis machine. All I could do was watch. After getting through some terrifying moments, in the middle of week two she made a comeback. They slowly took her off of sedation and she was awake! She couldn’t talk but if she mouthed slowly you could catch most of what she was saying. The end of week two they moved her to acute care. We were even allowed to bring her baby, Sedona, to see her. They started physical therapy and it wore her out but she kept going because that is who she was. She hated defeat. She was smiling, laughing and asking all kinds of questions – her typical self. She was doing great. She still had ups and downs but we all believed she was doing great and making progress.

Then just like that, my whole world fell apart. The doctor told me her blood pressure and heart- rate were dropping. If she crashed they could bring her back but there was nothing more they could do for her. I had to decide if it was time to let her go in peace. I cried. And cried. And cried. It was the hardest thing I have ever done in my life. There was nothing more that could be done for Jay. I did what I never wanted to do: I took her off of the crash list. Which meant if she crashed they would not revive her. By this time I was so numb I didn’t know what I was doing. I was just walking around in a daze. Her body was shutting down and they couldn’t stop it. The decision was made to stop the ventilator.

So on March 18, 2016 my wife of 16 years passed away. There are days I feel lost, but I dig deep to find strength. And what I find is her.

Jay was one of the most fearless people, someone who loved to smile and laugh, who lived her life everyday like it was the last. She taught me a lot. She is the one who she saved me. She taught me how to love, how to have fun, and how to listen to what she had to say (of course, she was always right). That’s the type of women I married. I love you Jay. Always have and always will. "

Please keep Heybo, Jessica's family, and all those who loved her in your continued thoughts. The beauty of Jessica's life will continue to live on through all those she touched. 

 

 

 

Brave Bundles -
Your interest and support of the Brave Bundles has been incredible! Thank you so much for your support in the continued mission of Breathe Bravely. If you sent us a message last week through our Brave Bundle page on our website - thank you! However, we cannot respond like we want to as there was no contact/email address sent along with your messages - just your name. We'd love to be able to send you a message so please send us a message with an email address at breathebravely@gmail.com or Contact us.

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : Chrystal & Lucy

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories. 

 

It is a privilege to share Chrystal's words and part of her incredible story with all of you. She is someone I greatly admire for her love of life and the hope she represents. Chrystal is a fellow adult with CF. Her life is filled with beautiful and unique experiences that continue to inspire all who have the great honor of knowing her. 
 

"The year was 2006, and she was the best 500 dollars we ever spent.  I had always wanted my very own dog, so I decided to reward myself for successfully completing another course of IV antibiotics.  Her name was Lucy and she had been abused in her short 10 months of life.  She was so skittish it was cute.  The submissive peeing every time she met someone new was not as cute, I later learned.  But the breeder said, after watching me interact with Lucy, that they would only sell her to someone she trusted.  Lucy showed her trust by leaning into me, ever so slightly, as I sat on the ground next to her.  And so began a four year journey of healing for the two of us.

I hadn't been abused in my 32 years of life, thankfully, but I was feeling beat up by CF.  It seemed like no matter how hard I tried, I still got sick and needed IV antibiotics.  Even when I was "healthy" and not on IVs, the daily regiment of therapies and meds is exhausting.  My compliance was beginning to suffer as I sensed the futility of it all.  Why do a therapy when my lungs are just gonna be full of junk again in a few hours anyway?  Why sit, by myself, surrounded by loud machines that make it impossible to hear my husband?  I felt isolated and lonely during therapy, yet if I tried talking to Lucas it made my therapy ineffective.  I didn't know it, but I needed a companion.  One who wouldn't expect me to talk over the loud machines.  One who would simply be with me while I did therapy.  

The biggest lesson I thought I was learning at that point in my life was the importance of compliance.  My doctor at that time, Warren Warwick, stressed that the more I could effectively cough sputum out of my lungs, the fewer antibiotics he would need to pump into my lungs.  I am so grateful that so many hospitals, including my hospital at that time, allow a patient's pet to come visit them in the hospital.  And so my husband Lucas would bring my companion dog to my bedside, and I found it so relaxing to run my hands over her soft apricot colored coat.  She was a standard poodle so she didn't shed and I never found any of her hair sucked into my therapy machines.  Of course she loved the attention, and would sit by my side for every therapy.  

Here is where the healing happened over the course of our time together, without me realizing it.  Here, in the countless therapy hours, where it was just the two of us.  She changed from a timid dog who didn't even know how to play with a ball in the backyard, to a joyful canine that seemed to smile every time I tossed the toy for her.  And I developed the habit and discipline of doing my prescribed therapies every day.  My gratitude for the vest machine cannot be overstated, and I've become addicted to the feeling of being able to breathe without wheezing.  Doing almost anything to get that "fix," so to speak.  Even doing double therapies because I just love being able to breathe well for the hours in between therapies.

At the time we bought Lucy, we didn't think we could have our own children.  It was almost like she was my kid.  This is the lesson I was really learning, and the healing that was really happening in my heart:  

Lucy was living proof that I could take care of someone other than myself.  

That I am more than just the sum of my therapies and meds.  

That what I do matters, and that caring for another can get me out of the self pity that often accompanies a chronic illness."

 

- About Today's Contributor - 

Chrystal is a 42 year old with CF.  She has her degree in elementary education with a minor in family ministry. Her passion is her family: husband of 17 years, Lucas, and three year old daughter, Hadassah Joy.  In her free time, Chrystal enjoys rough housing with her dogs, playing at parks with her daughter, and discovering new restaurants to enjoy with her husband.
 


- Read more real, brave, and inspiring stories at Real 65. 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : A Daily Dose

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories. 

 

 

A Daily Dose

Many people with CF take significant amounts of medication every day to manage their cystic fibrosis. The number of pills, their function, and the combination of such pills are just as unique as the people who take them. 

 

 

 

 

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Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : A Mother's Embrace

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories.

 

The most powerful force against CF is a mother's love. 

Jill, empassioned CF mom Jennica, beautiful and brave 6 yr old with CF

Jill, empassioned CF mom
Jennica, beautiful and brave 6 yr old with CF

 

 

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Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : The Doctor Is In

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories.

 

Since it is the last day of May and thus the final day of Cystic Fibrosis Awareness month we'd like to share another special REAL 65 with all of you. These are the very special words from someone who has been on the frontline of witnessing advancements in cystic fibrosis. He was Breathe Bravely founder, Ashley's, CF pediatric pulmonary doctor growing up and continues to impact so many lives as a CF pediatric pulmonary specialist. Read his great insight into the incredible advancements of the Cystic Fibrosis Foundation and his experiences through the years as a CF specialist. 

 

"Recently, someone asked me if I’d ever expected to see the progress that has been made in the treatment of CF when I started here years ago. It was the kind of question that made me step back and consider.

What had been my expectations when I moved here 24 years ago? And, as I thought about it, I realized that while I had expected some advances to be made in the treatment of CF, I thought, in a simplistic way, it would likely be in the development of better antibiotics or enzymes or nebulized medications. I don’t believe that back in the 1990's I would have ever conceived that not just one, but two drugs, Kalydeco and Orkambi, would be available for the treatment of some patients with CF.

Nor would I have ever dreamed that there are several more drugs being studied and developed that will work even better than these two drugs and will be available to treat more of those who have CF.

So I guess the answer to her question is no, I would have never dreamed of the advances that have occurred over the last 24 years in the CF world.

And there are two factors that allow me to answer this question in this way and that also allows us to look toward newer, better drugs becoming available for more and more people with CF.

One of these factors is the vision of the CF Foundation in partnering with many labs and drug companies to develop these drugs.

But the most important factor, the thing that makes it possible for the CF Foundation to be able to fund this research, are all the people with CF and those that love and support them. It is because of the devotion and dedication of all who raise funds through bake sales, golf tournaments, wine and beer tasting events and various other fund-raisers including walking in a Great Strides event. And that is because it is only through every baked good sold, every golf ball driven or putted, every item sold or auctioned, and every step taken at a CF walk that the dollars are raised that are necessary to fund the research that leads to these advances.

So, now I can’t wait to see what happens in the next few years…"

 

- About today's contributor - 

James Wallace MD serves as the director of the South Dakota Cystic Fibrosis Center located in Sioux Falls, SD while serving as pediatric pulmonary specialist. 

 

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

Real 65 : Lucas & Chrystal

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories.

 

Today's meaningful entry is written by Lucas Moldenhauer, a dear friend and support to Breathe Bravely. He is graciously sharing his story of what it means to love someone with CF - his wife Chrystal,  and the beautiful meaning of her birthday. 

"Do birthdays really need to be painful after someone turns 40?

I turned 40 almost a year ago. My wife, however, can hide behind her ageless beauty. The fact that she chases our 3 year old daughter from one playground to the next with collegiate agility also helps to hide her true age.

Chrystal and I met in college. Looking back now, it seems like a long time ago in a galaxy far, far away.  Chrystal had been diagnosed with Cystic Fibrosis when she was 3 months old. She was well accustomed to the CF curve balls, the loneliness, the marathon, the spiritual struggle of a genetic disease.  I was beginning my CF learning curve.  I can still feel that intensity, that excitement. I can remember learning to anticipate the left hook after the quick right.

Birthdays are different for everyone. For CF patients, they could be just another day of drudgery.  They could be mere painful reminders of lost time or lost friends. Birthdays could also be milestones on a unique marathon of life. When we started dating in college, we didn't know how many birthdays we would celebrate together. But on any journey in life, if you wait for all the lights to turn green before you start, you'll probably never start.

Her birthday last month found her in the hospital for an 18 day visit, in a city far from home. In fact, her hospital of choice is almost at the other end of our time zone. So while Chrystal worked hard doing her 4 long pulmonary therapies each day, listening to the drip, drip, drip of Intravenous Antibiotic Cocktails, I loaded Chrystal's therapy poodle Maggie and our daughter in the car to cross the Mississippi River and head west!  As our 3 year old daughter was practicing her "S" sound, saying MissiSHIPPi, over and over, I started contemplating some of our history with CF, and a list started to form.

You might be old with CF if you remember:

  •         The original VEST machine that actually weighed 100 pounds (and barely fit in the back of our Geo Prizm). We were so glad that each VEST got smaller and smaller. Now they weigh 18 pounds I believe.

You might be old with CF if you remember:

  •         Manual chest percussions. Chrystal and I met on college choir tours, and her close friends were the "percussion team" in the back of the bus, keeping her breathing. When Chrystal would visit my home, my mom would put on the old vinyl Godspell and we would do percussions to the melody of "Prepare Ye the Way!"  Come on now, sing it with me :)

You might be old with CF if you remember:

        Telling your friends not to bother looking up CF in the encyclopedia, because those old dusty things were so outdated they said the patient wouldn't live past 2 years of age. 

You might be old with CF if you can Not remember:

  •         How many Christmases, Easters, Thanksgiving feasts, birthday parties, Family vacations had to be missed because of an urgent hospital stay.

You might be old with CF if you can Not remember:

  •         How many talented, selfless, dedicated, professional doctors, nurses, aides were there during Christmas, Easter, and summer vacation, to give their best care.

They say, you are only old if your list of regrets outnumber your list of dreams.  I believe that's true and that turning 40 can be just as exciting as 18.  When Chrystal and I started dating, we had no idea the huge advancements that were just around the corner.  I believe the future for CF care is more exciting now than ever.

Thanks for being part of the CF community. I can't wait to hear your stories of how CF has improved your perspective on life."

- About Today's Contributor - 

Lucas Moldenhauer loves to travel, encourage, inspire, discover and connect. He and Chrystal got married over 15 years ago while obtaining his Masters. Leaving a legacy for their 3-year-old daughter is important to him.  He aspires to mow many acres of grass with herds of buffalo. 

 

 

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Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.

REAL 65 : Befriending a Butterfly with CF

Real 65 is a segment of Breathe 3-65 that is dedicated to entries and interviews sharing honest and personal experiences of living with, treating, and loving someone with Cystic Fibrosis.
It is a place for all those impacted to share their stories. 

It is a great privilege to introduce the first entry for Real 65 written by Paige Pearson Meyer. She is a dear friend of Ashley's and is an integral part of the nonprofit, Breathe Bravely. Learn how her life was touched by CF and what it is like to be a friend of someone living with CF. 

 

I remember where I was and the very first thing she said to me. With a smile like a brand-new Phillips bulb, lighting up her whole body, she bounded up to me and said, “Hi, I’m Ashley! And, I just think you’re fabulous on the news!” While flattered, her words were different. They weren’t hollow with recognition. I could feel she meant what she said.

IMG_20160227_102017-1.jpg

Three and a half years later, I’m honored to call Ashley Ballou-Bonnema my friend. I look back on our first meeting so fondly, and yet I couldn’t have imagined the richness our friendship would bring to my life. I didn’t know Ashley was living with Cystic Fibrosis. Quite honestly, I knew very little about CF and its vast effect. I didn’t know how it gets its pirate-like hooks into those with the disease, making it difficult to breathe and forming cysts on the pancreas. I didn’t know that so many people are carriers, nearly 1 in 31. I didn’t know about the unbelievable cost of trying to treat the disease. There was so much I didn’t know.

To my great fortune, Ashley was going through a metamorphosis when I met her. For years, she’d wrapped herself up in a tight cocoon, letting few people know about her life with CF. She found her wings by blogging about her experiences. Those blog posts helped open a dialogue between Ashley and me. Curious by nature, I quickly learned that my many questions would be met by self-deprecation. Ashley is quick as a whip, always inserting humor into conversation. She’s also extremely talented at deflecting, shifting the conversation back to something that’s going on in your life. But, I’ve learned that her humor and deflection are often veils to what’s really going on. I’ve learned that the many years of physically battling CF have been just as taxing mentally.

You see CF is devious. In one breath, Ashley’s beautiful soprano voice is clear and captivating. Her spirits are soaring as she shares her gift with the world. In the next breath, Ashley’s core is shaken, trying to fight off another life-threatening infection. Ashley often talks about the seasons and how CF has its seasons too. It’s so amazing to witness, but even on the days her body quakes from thunderous coughing spells, Ashley is grateful. She’s grateful for life. She’s grateful for her adoring husband, her supportive family, and her incredible friends. She’s grateful for the seasons.

Yes, I’ve learned about CF. My education includes things I wish didn’t know. But, what I’ve learned about my friend often causes me to shake my head and smile. Ashley is fearless and courageous. She’s warm and witty. She’s also the most grateful person I’ve ever met.

 

 

- About today's contributor - 


A journalist at heart, Paige Pearson Meyer is a wife, mother, and ardent supporter of Sioux Falls, South Dakota. Paige is also the Communications & Recruitment Manager at DocuTAP. Paige is blessed to serve on the Breathe Bravely board, helping to bring awareness to Cystic Fibrosis.

 

Learn more about Breathe Bravely's founder, Ashley, and her personal journey with Cystic Fibrosis - A Brave Beginning. 

 

 

Disclaimer: The writings and postings of Breathe 3-65 are a reflection of the personal opinions, experiences, and knowledge of the contributing author. Breathe Bravely is not liable for the statements and personal opinions shared. The material of Breathe 3-65 is provided with the best intention and great care is taken to share information from credible sources. However, the content shared on this blog is not medical advice and is not under any condition a substitute for the medical advice provided by your medical providers. Please consult your care team before making any changes or additions to your current CF treatment plan.