Filtering by Tag: Inspiring

sINgSPIRE - A Night of Song

August was a pretty memorable month for Breathe Bravely - filled with meaningful milestones and events that only could be possible through the generous support and incredible work done by those who help make up this organization. Here's a glimpse into one of memorable nights:

On Tuesday, August 15, 2017 the instructors of sINgSPIRE came together to not only share a memorable night of music, but they also shared their own experiences being a part of sINgSPIRE. Those present that night were able to become a part of sINgSPIRE and be fully immersed in the life-giving impact of the program. Audience members were given a glimpse into the sINgSPIRE program, what it is all about, and the amazing progress of some of its students. Instructors shared moving personal accounts of the incredible progress and life-changing impact this program has had on both their students and on them as teachers. sINgSPIRE is giving voice to cystic fibrosis in so many different and life-changing ways. 

Here's a glimpse into some of the incredible music of the evening provided by our sINgSPIRE instructors: 

As we wrap up our second session of sINgSPIRE, we gratefully reflect on this incredible opportunity we've been able to see come to life through such passionate instructors and engaging students. sINgSPIRE has been more impactful than we could have ever dreamed and we are truly thankful for the support of the Cystic Fibrosis Foundation and each of you who has generously supported this vision and helped give it such incredible life. 


A very special thank you to everyone who helped make "sINgSPIRE - A Night of Song" come together into a beautiful and unforgettable evening. Thank you to First Congregational Church in Sioux Falls, SD for hosting this memorable night of song and graciously supporting our mission. 

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.

Breathe Bravely Backyard Bash

It happens once a year. After a morning of walking to support the Cystic Fibrosis Foundation and their tireless endeavor to finding life-extending therapies and cure for those living with CF, our backyard is transformed into a gathering place for a night of celebrating Breathe Bravely. A night celebrating each of you that has helped give life and breath to this organization and made it sing.

This night was something truly special. The energy in the backyard was contagious to anyone who walked through its gates. It was an atmosphere that enveloped you in pure happiness: live music from beneath the pergola, awesome pizza, amazing friends, and a simple cause that was alive in every person present. From beneath the giant tent and backyard you could hear laughter from all the kids, the crash of giant Jenga blocks, and an abundance of joy. Most of all, there was an unmistakeable hum of excited conversation - dialogue that buzzed around the incredible milestones achieved by Breathe Bravely this past year. 

BRAVE BUNDLES:
In the last year, Breathe Bravely has sent out 20 Brave Bundles to individuals across the United States in need of an extra boost of bravery and support during a difficult time. Find out more about our Brave Bundles and send us a message with the name of someone you know that might be in need of a Bundle: Brave Bundles.

IMPACT:
This year, Breathe Bravely was awarded an incredible opportunity. Our organization was the recipient of the Cystic Fibrosis Foundation Impact Grant - a grant allowing Breathe Bravely to see its dreams of sINgSPIRE take shape and come to life.

sINgSPIRE:
In February of 2017, Breathe Bravely's sINgSPIRE program was underway. The first 5 students had a successful and meaningful 10 weeks with their assigned sINgSPIRE voice instructor - together combatting cystic fibrosis through the art of singing. This week, 5 new sINgSPIRE students will be assigned to one of our brilliant sINgSPIRE instructors and the next session will be underway! We are off to an amazing start with this Breathe Bravely original program and it couldn't have been possible without you and your fervent support! Learn more about our program and submit an application today.

GIVING VOICE
Over the last year, Breathe Bravely has had the amazing opportunity to use its voice - creating meaningful dialogue and building a community among those impacted by cystic fibrosis. Most importantly, we have continued to simply find and share the beauty that lives within every breath we each are given. 

None of this would have been possible or continue to be possible without each of you, your unwavering support, and belief in our mission. Thank you for being right next to us every breath of the way. It's amazing what can happen in a year, and we are just getting started. 

If you'd like to learn more about Breathe Bravely, donate to our mission, or send us a message please explore our website!

 

 - THANK YOU - 

A huge thank you to Jordan & Stacey at Big Top Tent Rentals for their heartfelt generosity. Thank you for taking such good care of us, keeping us cool, and helping us transform our backyard into some place truly unforgettable for the Breathe Bravely Backyard Bash.

As always, the music made the evening and it couldn't have been more meaningful. Thank you to dear friends of mine and advocates of Breathe Bravely, Martha & Mr. Stai. What you both shared that evening was absolutely priceless and so meaningful. Thank you!

One of my favorite elements of the evening, of course, was the food. Not only was the food delicious and so fun to partake in, but the people who made it are what made it so special. The wood-fired pizza and the genuine kindness shown by Kyle & Nicky at Skipping Stone Mobile Wood Fired Pizza is something that helped make the celebration so memorable. 

Speaking of food, we cannot forget what has become the signature dessert of our event: the Red Velvet Cake made by Darla. Not only is it delicious but it's made with the most genuine of love, making it all the more unforgettable.

Most of all, however, thank you to everyone who came out and celebrated with Breathe Bravely and to each of you whom so passionately support us. We are so very grateful for each of you and your generosity. I hope this year's Breathe Bravely Backyard Bash was a fun and special night for each of you! Here's to an incredible year ahead.

 

Truly grateful,

Ashley

 

 

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.

Simply CF : A Month of Awareness

For the 30,000 people in the United States cystic fibrosis doesn't just make its presence known one month out of every year - it is a part of every day of every year. There is no break. There is no simply forgetting about CF. There is no running from it. 

The month of May is specifically dedicated to giving voice to cystic fibrosis and all the lives it unapologetically touches. It's meant to shine a light on the tenacious individuals, families, and friends who tirelessly live with this disease 365 days a year. It's meant to highlight the strength of all those impacted by CF and the relentless dedication to finding a cure.

This month, Breathe Bravely will be sharing ways in which you can support cystic fibrosis. CF may be a powerful force, but its tenacity and strength is no match to the courage and determination embodied by the CF community.  

How are you giving voice to CF this May?

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 : Dreaming Pink and Blue

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

At the root of every life are dreams unique to the person who holds them. Much of our lives may follow a similar path but the details that compose them are what make the journey truly unique to its dreamer. But sometimes those dreams are littered with obstacles beyond our control. It's a true privilege to share Trini's story with you today. Most of all, however, it's a privilege to share her dreams with you and how she has not allowed her a life, which could possibly be seen by others as one filled with undeniable obstacles - one being cystic fibrosis. 

"I feel like every decision I have made in my life has prepared me for my diagnosis of Cystic Fibrosis. Obviously I didn’t know that I had this disease for the first 29 years of my life, but I feel like I was prompted to make the decisions that I have to keep myself healthy.

At a young age I was introduced to the world of sickness, but it wasn’t me that was sick. My older sister had “asthma” and was in and out of the hospital with breathing problems. She was on multiple medications and she also was on breathing treatments. I was familiar with the hospital, breathing treatments and antibiotics. When she was 29 years old she was diagnosed with Cystic Fibrosis.

I was a really lucky kid and I hardly got sick. When I was 13 I started getting sinus infections frequently and ended up getting sinus surgery due to the buildup of mucus in my sinus cavities. When I was 14 I had my right fallopian tube removed due to a paratubal cyst; who knows if that was related to my unknown cystic fibrosis. I started swim team in 8th grade and continued to swim all through high school, as I look back now this was the best exercise I could have been doing for my lungs and my sinuses. I was diagnosed at the age of 16 with “exercise induced asthma” because I was constantly coughing up junk during swim practice and swim meets. In my early 20’s I don’t remember getting sick very often except for my struggle with fertility. I had labs drawn, a Hysterosalpingogram (HSG), went on fertility medications, had a second tubal surgery, and finally went to a fertility clinic to start the In-vitro fertilization (IVF) process.

I have always wanted to be a mother, it has been my goal in life, and I have dreamed about having a big family. I was very lucky and got pregnant on my first IVF cycle, with twins nonetheless. My husband and I were so excited. When I started to relax about my pregnancy I started to have complications. I started contracting at 19 weeks, then we lost our little Corbin at 24 weeks. We were devastated. We continued to have complications with bleeding, and more contracting and then at my 29 week appointment our living son's heart rate had dropped way below normal. I was checked in to the hospital and then ended up delivering our son 12 weeks early with an emergency cesarean section. 2 years later we tried getting pregnant again through IVF and got pregnant but miscarried 8 weeks later. After this miscarriage I didn’t want to try to get pregnant again  without getting everything checked out. We found a great high risk pregnancy center and went in for genetic counseling. My older sister had just been diagnosed with Cystic Fibrosis 2 years before and they decided to screen me for the same genetic markers that she had. August 19th 2015 I was diagnosed with Cystic Fibrosis. I would say that starting from the years we were  trying to conceive until this diagnosis were some of the most emotional years of my life. With fertility treatments, miscarriages, burying a child, doctors appointments and then being diagnosed with Cystic Fibrosis; it has surely been an emotional rollercoaster.

Last summer we were approached by my beautiful sister in law, she offered to get implanted and carry our child. I didn’t want to give up on my body and we decided we would implant one embryo in my sister in law and one in me. We are both 26 weeks pregnant and are so excited to complete this journey. I am working closely with my OB, high risk doctors, and my CF team to make sure that the baby and I stay healthy and complete the pregnancy with a healthy baby. Now, my pregnancy hasn’t been the easiest; I bled through the first 18 weeks, started contracting at 20 weeks, and I am on multiple medications. The important thing to remember is that you can’t change what you're given in life but you can control how you look at the challenges you are given. Don’t give up. If there is something in your life that you want, there is a way to get it, or accomplish it. Just because you have Cystic Fibrosis that doesn’t mean anything. Focus on what you can change and what you can do to make life easier, keep yourself healthy and get what you want!

Keep Dreaming! "
 

 - About Today's Contributor - 

Trini is a passionate mom, nurse, writer, and relentless dreamer. To follow her journey of dreaming and becoming a mom go to her blog, Dreaming Pink and Blue.

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 : Jigglyknits

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 Breathe 3-65 is a special Q&A with a remarkable woman that is a part of the CF community. It was so much fun! It's so special to share the stories of people like Jen who are a part the CF community - sharing how they're using their own talents and passions to inspire those around them. 

 

Question- Tell us a little bit about your story.

Answer - My name is Jen, I was diagnosed with CF at age 5, and I’ll be celebrating turning 37 in just a couple of months. I grew up in Casper WY but now live in Bellingham WA (right between Seattle & Vancouver BC). I’ll always be a Wyoming girl at heart, but absolutely love living in the Pacific Northwest.

When I was 2 my mom had heard about CF on the radio during a “kiss your kids” campaign and realized that my extra saltiness fit the description. She took me to a doctor and was told that she was just being a paranoid first time mom and that I was fine. Then a few years later at my pre-kindergarten appointment she mentioned my distended belly to the doctor (a different one) who had me tested for CF.

 

Q - How has CF influenced the person you are today & how you choose to actively live your life?

A - Growing up I was pretty embarrassed about having CF. Since I grew up in pre-social media days and lived in a small town, I was the only one that I knew that had it so I felt very different from the other kids. My CF is fairly mild, so I was always able to hide it and I really only told a few people that were close to me about it.
As I’ve gotten older and I’ve had to integrate more treatments into my routine, I’ve had to make “having CF” more of a part of my life. I am a lot more open about it now, and I don’t really mind telling people that I have it. I started with baby steps by blogging and posting under the name jigglyknits since it gave me some anonymity, but I’ve gotten to the point where I just assume everyone knows that I have CF since I share so much of it on social media now. I’ve also matured enough to realize that the more awareness there is about it, the more fundraising will be done, and a cure can be found.

I never really have, and still don’t, let having CF hold me back from anything. It might make some things more difficult, but not impossible. No matter how much planning and packing for a trip seems like it.

 

Q - Knitting clearly has become something special in your life - what role does it play in your life with CF? Where and why did you learn how to knit?

A - I’ve always loved making things. If it’s some sort of craft, I’ve tried it (or it’s on my list to try). My mom is the same way and was always doing different crafts when I was a kid. She taught me how to cross stitch, crochet, and knit. I didn’t really keep up with knitting, but about 7 years ago I decided that I wanted to give it another try, so I ended up re-teaching myself using videos on the internet. For me, knitting is very therapeutic. Maybe it’s because I have to focus and count while I’m doing it, but when my anxiety starts getting to be too much, I can pick up a project and it really helps to calm me down and get back into a better frame of mind. It’s also portable, so can be brought along to fill the time while waiting around at clinic!

 

Q - What is Jigglyknits & how has this turned into a passion project? How has knitting positively influenced your life and continued journey with CF?

A - Last year when my lung functions started to drop and I had to start doing regular Vest treatments, I was gathering up some knitting supplies to have something to do to pass the time. My husband was watching me and made a comment about how I should sell what I make and donate the money to the CF Foundation, and that I could call it jigglyknits (the name jigglyknits comes from the fact that we have always called the Vest my “jiggly vest”, because of how much it shakes my whole body). As I did my treatment that day I thought a lot about what he said and it just really struck a chord with me. If I was already going to be spending this time helping my health, why not use it to benefit others too?

It also really helps to hold me accountable to doing my treatments, since it gives me a tangible reason and goal to doing them. It’s really made me have to “own” having CF and take better care of myself. Social media is huge too. Through my jigglyknits instagram account I’ve been able to meet and interact with so many other people that have CF that it makes it all feel a little less isolating.


Q - Would you consider sharing your passion for knitting with others with CF and teach them how to knit? A CF knitters group? Jiggly Knitters?

A - When I was in the early planning stages for jigglyknits, I actually envisioned having a team of knitters with CF that made items while doing their treatments. Then with each item that someone bought, they would get a card with information about the person that made it. I don’t really know how to implement it, but I would love to be able to expand to that level.

Logistically, teaching people to knit over the computer might be challenging but I’m definitely open to the idea if there is anyone that would want to join me and be a jiggly knitter!
 

Q - How can people support your shop and purchase or order a Jiggly Knit item?

A - One of these days I’ll get my own website set up, but right now I am selling through etsy at www.jigglyknits.etsy.com.

 

- About Today's Contributor - 

Jen Eastin is a 37 year old from Bellingham, WA living with cystic fibrosis. She is the founder and hands behind Jigglyknits. Find out more about Jigglyknits on facebook and Instagram!

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.

Where it All Began : Fresh Paint

Who would have thought the two simple words "breathe" and "bravely" would come to represent what they do today. On April 1st, 2014 I took a deep breathe and bravely shared my first blog post.

Looking back it is all a bit surreal, and I can still feel the knot in my stomach and the shakiness in my fingers as I hit the "publish" button for the first time. For 60 days straight I blogged about my life with CF. I was open, honest, and real about the beauty and difficult realities my life held - seen and unseen. It's a decision that would impact my life more than I could ever fathom. Thank you to everyone who has been with me every step of the way through this incredible journey and continues to love me for all that I am. Love to you all.

Take a look back at where it all began those three years ago. (Click on the heading)

Breathe Bravely : Fresh Paint

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Today's post was written by Ashley Ballou-Bonnema.
To learn more about Ashley & Breathe Bravely as a non-profit organization click on the active links!! 

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.

Sing Bravely : Karaoke for CF

On Thursday, March 9 an amazing group of people came together - both steadfast supporters who have been on this Breathe Bravely journey with us from its very beginning and new friends who for the first time, heard about Breathe Bravely's dear and personal vision of giving voice to CF through sINgSPIRE.

"Sing Bravely" was a fantastic night celebrating our sINgSPIRE program - a 10 week program that combats the effects of CF through the art of singing. Students are paired with a sINgSPIRE voice instructor and take part in individual voice lessons either in-studio or via video-call. Our first sINgSPIRE session is halfway through and the excitement for the next session is incredible!

Thank you to everyone who made our night at "Sing Bravely : Karaoke for CF" so memorable and who has joined us on this unforgettable and impactful journey. 

If you weren't able to make the event but would still like to donate towards our sINgSPIRE program, DONATE HERE! I  

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.

sINgSPIRE : Good Vibrations

If you look closely at any great thing in life, you'll always see that it is comprised of people who see exciting possibility within the impossible - together making the most incredible impact.

To come together and be in the presence of these brilliant women is absolutely inspiring. Last night, our incredible sINgSPIRE instructors came together - sharing experiences of the last couple of weeks working with our amazing students in the program. The key is not only teaching the art of singing but linking it to living a life with CF as well. Most people don't know what it feels like to do a VEST treatment and how much pressure it puts on our chest. A year or so ago, my husband, Mark, brought to my attention that I hum or sing while doing my treatments. I didn't even realize I was doing it. Mark calls it "chirping." After realizing that I do it, I became more conscious of it and started really thoughtfully utilizing it while doing my VEST. Why do I do it? I do it because it helps relax my breath and streamline my inhalation and exhalation. I also think it helps vibrate my chest even more.

So, what did we do at our meeting last night? Some of the instructors strapped on my VEST and first-hand felt what it's like to be vigorously shaken. More importantly, they felt how the art of singing can impact our students even more. I am grateful beyond words for each of them.

Written by Ashley Ballou-Bonnema

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 : Voices of 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. 

Coming from a multitude of diverse backgrounds, experiences, and dreams, the cystic fibrosis community is made up of some of the most determined and inspiring individuals. Each journey is as different and unique as they are incredible. Giving their own unique perspective and voice to CF, the CF community is filled with people giving voice to CF through personal blogs. Each blog a telling example of how this disease affects each of our lives so differently, while reminding each of us impacted that we are never alone. 

Want to see the diverse sides of CF and follow other inspirational and honest journeys? Here are six blogs we think you should follow of people living with CF.  Each blog a diverse and honest representation of strength, tenacity, and bravery.
 

Do you have a blog about CF or follow a great CF blog? Share it with us! We'd love to check it out!


Thank you for the great enthusiasm and response to sINgSPIRE! Did you check out the enrollment information? sINgSPIRE Program

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.

The Joy of Giving

It’s a beautiful thing when people see beyond their differences and join together in a common experience. These days there are plenty of things that threaten to divide our country, society, communities, and even our homes and families. But when we choose to see past our differences and the things that divide and push us apart, something amazing can happen.  Most people have a few universal values that they hold in common and are dear to their hearts. The holiday season gives opportunity to pause, reflect, gather with friends and family, and reconnect with some of those values and experiences.

One of these experiences is the joy of giving.  Parents work hard to keep the secret, the mystery, and the intrigue of Santa alive for as long as possible with their children, both because they love to see the wonder and awe in their children’s eyes, and also because it brings the parents a full heart and much joy to be able to give to their children. Adults keep the joy of giving alive by doing secret Santa exchanges and giving gifts to their friends and family members who likely do not truly need anything, but experiencing the joy of giving urges them to give.

It’s great to give to those we love and are close with- our children, family, and friends. It’s pretty easy to see past our differences with them and give to them out of love. But there are many opportunities to see past our differences with those on a greater scale in our communities and across the country, and to experience the joy of giving at a whole new level.

Today is #GivingTuesday.  Today is an opportunity to connect with the joyous feeling of giving, and to do so by supporting one of a host of worthy groups, causes, and charities. All across our community and country people are doing good. They spend time, energy, resources, and money helping and advancing the lives of others and the state of humanity. They experience the joy of helping others, and today you can join in that joy by giving your support. Today you can embrace the joy of giving. Let us come together under the banner of doing good. Surely, doing good is something we can all agree upon, and today is as good an opportunity as ever to take action- pledge support, pledge resources, pledge money to a cause, group, or charity in your community or in our country that is doing good. 

Donate and put this photo as your temporary profile image or share it to social media to show your support for Breathe Bravely and Giving Tuesday!

This #GivingTuesday may you know the impact of your generosity, support, and the good you share. On this day devoted to the joy of giving, I ask you to consider supporting an organization that strives to give - give voice to CF, that is.  Breathe Bravely just celebrated its year anniversary and we are deeply grateful for each of you and the support you fervently share with us. Breathe Bravely has big dreams that are coming to life by the day and by the moment. This year is going to be an unforgettable year in the life of Breathe Bravely - aspiring to impact so many through its programs like sINgSPIRE, Brave Bundles, and signature Breathe Bravely events. Today, experience with us the joy in giving - giving voice to CF by supporting Breathe Bravely. 

 

Share your voice and - DONATE -

 

Today's Breathe 3-65 entry written by Mark Bonnema. 

 

 

 

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 : 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 65 : Dana's Dream Part II

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. 

Last week, Dana shared part I of her powerful story and the heartbreaking realities she faced. Her words embody the very definition of what it means to be courageous, inspirational, and tenacious. Please take a moment and read Part II of Dana's Dream and let her story inspire your day. 

Dana's Dream Part II

"So I took that leap of faith and in March 2015, I was officially placed on the list and considered active.  I had already been in the hospital since January at that point and I was struggling more than ever.  My body was physically giving up.  My energy was at its ultimate low and whatever energy I did have I used to just keep my body going long enough to hopefully receive new lungs in time.  Being placed on the transplant list was really hard on me mentally.  In fact, just being in the position of a life or death situation was taking its toll.  I had never felt more terrified in my life. There was so much I didn’t know and nothing has ever scared me more than the unknown.  I lived every day wondering whether I would get the call, or whether my life was truly ending.  I spent many of my days crying because I didn’t know how else to deal with it.  My husband stopped working and stayed by my side in the hospital my entire admission.  At home our friends and family members were working hard at creating and putting together fundraisers for future transplant expenses.  I was hospitalized from January 2015 until May 2015.  My hospital room became my own little apartment I decorated and made feel as “home-y” as possible.  The hospital cleaning staff, the dietary staff, and even the transport staff grew to know more then just my name and birthdate.  And of course the doctors, aides, respiratory therapists, and nurses not only became my friends, they became my family.  It was my home away from home. 

In May 2015, after months of many different treatments, there was nothing more that could be done.  I wasn’t getting better, but there was nothing else to do except wait.  Wait for my life saving call.  At this time I was in fact to ill to travel back home, which was four hours away from my hospital, so my husband found an apartment for us to live in, within one weeks time.  I wasn't going home and truth be told I didn’t know if I would ever make it back.

Within two weeks of being discharged from the hospital I was admitted once again.  I knew at this point that this was it.  That I was now so sick that I was either going to be in the hospital until I received my new lungs or I was going to spend my last days there.  It was June 2nd, and I was getting my Chest PT at the time and as I was chatting with my respiratory therapist when I had this weird feeling.  I didn’t put much thought into it until after my PT was finished.  I was sitting in my hospital bed and I looked at my husband and told him that I had a feeling I was going to get a call really soon.  It was such a strong feeling I was scared just talking about it.  Sure enough, the next day on June 3rd, I was told there were a potential set of lungs.  After many phone calls, orders, tests, consents, and a transfer to the main hospital, late that night I was told that my surgery was in fact “a go.”  For months I had this unbelievable fear that I couldn’t shake and right before I found out the lungs were mine, every worry I ever had was gone. It was the craziest, yet most comforting feeling.  I did not know how surgery would go or what path I was headed down, but I chose to have hope and faith.  As I was saying my goodbyes to my husband and family, I was about to be rolled into the operating room and I told them one last thing, “I got this.”  That was the first time in a long time where I truly believed those three words I spoke.  I was rolled into a huge bright white room with several people already setting things up.  I was then transferred from the bed I was in to the surgical table.  I stared up at the white ceiling, surprisingly not anxious, only slightly nervous, but mostly calm.  After I was all prepped and set up, I closed my eyes and prayed.  Praying was nothing new to me, but this was a prayer like I've never said before.  Short, sweet, and to the point. 

In that moment I was finally at peace with whatever may happen, trusting that what I was facing was bigger then me.  I lived my life the best way I knew how for twenty five years. I laughed until my cheeks and tummy hurt, and was given the opportunity to not only love so many people, but to be loved, truly and deeply.  So before I knew it, I heard, "Alright Dana, we are going to take real good care of you, no worries.”  Placing a mask over my nose and mouth, I was inhaling as slowly and deeply as I could, dreaming of the moment that those deep breaths would be effortless.

June 4th 2015.  That was the day that by the grace of God, my life was saved.  A young girl changed my life in the biggest way and I am so grateful for her everyday of my life.  She is my hero and my angel, and I take her with me in all my adventures through my new life. 

My second chance at life has brought me a lot of different emotions.  Some of these feelings I know well and others, I had never felt before.  As time continued on with days and months passing, I saw changes.  Receiving a double lung transplant was an amazing gift, but by far the hardest thing I have ever had to do in my entire life.  It changed a lot of things in me, physically, mentally, and emotionally. I can now understand majority of what I am feeling, but every once in a while some new ones pop up. (Part of the rollercoaster I guess). I went into surgery as one sick young woman who had been suffering and slowing dying. I came out of surgery with not only new lungs but as a new person with a new perspective on life. I was alive and that's when I started truly “living” again.

Today I am speaking to you as a twenty seven year old woman who is proud to say that I am almost sixteen months post double lung transplant!  It has not always been easy.  The doctors had said that there would be problems, just a different set of them.  Since I was transplanted I have dealt with moderate rejection, severe and debilitating allergic reactions, pancreatitis, and severe kidney disease.  But since I was transplanted I have also been able to put away my nebulizer, return my vest, walk, run, dance, and my personal favorite BREATHE! These beautiful lungs I have received have given me sixteen extra months with my husband, family, and friends. There is so much love, and so much laughter, and I have never felt more alive in my entire life.   

So although I have been given new lungs, my time with them is unknown, and I can only hope and pray for the good path.  I want to show people that CF is the real deal. So the only way for me to do that is share my story with the world in hopes that I can help at least one person. Then with continued awareness comes fundraisers and donations to the CF foundation in hopes to one day find a cure. I want to hopefully also show people that there is always going to be "something" in life. With everyone, not just me. It's all in how we handle it. That's when your "true you" comes out. It's okay to be mad or sad, nervous or worried because eventually all those things will lead us back to happiness as long as we let it.

Transplant is no cure for CF, but it buys you more time to be on earth with the people you love and the things you love to do. You can have the chance to go places you've never been, volunteer at a organization, help an elderly man or woman to their car, show random acts of kindness.  Stare at the bright blue sky and watch as birds fly together in the air.  Enjoy watching the leaves on the trees fall softly to the ground, and close your eyes to feel the cool wind and the stunning warm sun on your skin.

I've known, seen, felt, and suffered more then any twenty seven year old woman should have to. But that makes me who I am. CF does not define me. CF is a part of me and has shown me how to have strength, courage, determination, and perseverance.

So I guess the moral of the story to anyone reading this, is to never give up, persevere, never lose hope, and have faith that things will be okay. Don't be afraid to FEEL.  Physically and emotionally. Embrace it with open arms and an open heart.  It took me 27 years to fully understand and comprehend that life is a GIFT, so live it! Human society becomes robotic at times, in return missing all the beautiful things in life.  So next time you are in a grocery store running around like a maniac, driving too fast because you are running late, or simply feeling like your day is slowly getting worse; just stop for a second, close your eyes and truly FEEL what it's like to be calm and content.  Listen to the birds chirp, the wind blowing, or simply find peace in silence.  Then take a deep breath because without those breaths there would be no you, or no life. Then once you do, open your eyes, and if you truly believe it, I guarantee that you will see a whole new beautiful world.  And guess what? It's pretty special."

 

 

-  About Today's Contributor  -

My name is Dana and I am 27 years old. I was born in Philadelphia Pennsylvania, but now live with my amazing husband in beautiful Central PA. 

I am a licensed Cosmetologist which has always been my dream job!  I professionally worked in a salon for many years until my health no longer allowed me to. Now, I do my work for just family members and close friends. I am also a dance instructor. I danced for 15 years as a child, and now have the incredible opportunity to be back as a teacher in the world of dance! Some of my favorite things to do are, watch movies, read, dance, and spend as much time as I can with the people I love! Writing has always been something I have also loved to do and with all my experiences with CF and now transplant, I love sharing my stories with others, in hopes that I can provide hope for others! We need a cure!

You can continue to follow my journey through Facebook by typing in "Dana's Dream Team" which is available for the public to see! I am always so grateful for the continuous love and support! XOXO

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 : Dana's Dream Part I

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 Real 65 is a great honor to share with all of you. Dana's passion for life is infectious. It is such gift to have her share her journey of CF with all of us and invite us to walk along side her as she relates her own life to every one of ours. Life with CF is not fair but it still can be incredibly beautiful - Dana's journey is a perfect example of that.
 

“The faster we live, the less emotion is left in the world. The slower we live, the deeper we feel the world around us.”

"As a society we all have something in common.  Although we are all very different, there is one thing that connects us all and that is emotion.  Everyone has their bad days struggling to find the happiness in those moments.  I believe that it's okay to feel sad or angry.  Or maybe you are nervous, anxious, or frustrated.  I believe that all these emotions are important to feel and important to acknowledge.  Having one emotion consume your life while it’s pushing away the others usually ends in ourselves feeling like we are about to explode, or that we are carrying a significant amount of weight on our shoulders. I believe that particular statement even goes for such an emotion as happiness. Sharing and feeling all types of emotions are healthy for the human body and brain. Our multiple emotions is what makes us who we are. It shows us that we are alive. Experience and life itself gives us emotion, therefore molding us into who we are supposed to be.  So as you embark on this journey with me, I would like to welcome you to my emotional roller coaster. 


I was diagnosed with Cystic Fibrosis at three months old.  My parents were twenty two years old and I was their first born.  Talk about an overwhelming amount of news.  The medical staff of doctors and nurses told my parents that it would be very unlikely for me to make it to my eighteenth birthday.  Well here I am today, very proud to say that I am twenty seven years old and have accomplished so much in my life.  My story has been far from boring and although difficult and debilitating situations arose many times, somehow I wouldn’t go back and change any of it even if I could.  I believe that CF; no matter how much physical/emotional stress and torture I have been through, it has somehow helped me become the person I am today.  That I am very proud of.

I am far from perfect, but everything I write is from my heart and it’s honest. I strive to be the best version of me that I can be. Even though on the outside things can look normal, it's what's behind closed doors. That's the real stuff. For a long time I would always try to smile and mask how I would feel physically and mentally. But now, I don't try to be strong for everyone else. I don't lie and put on a show to make people think I'm always doing okay. What you see is what you get. It's not for pity and it's not for attention, it's reality and it's also awareness.


I've felt almost every emotion in the book over these past two and a half (almost three) years. I've broken down, I've spent hours crying, and I've been so angry I’ve wanted to just scream at the top of my lungs. I've been anxious and nervous to the point of my brain feeling like it wanted to explode. I've been in the worst pain of my life to the point that I just wanted to slip into the deepest sleep forever so I wouldn't have to feel anything. With new situations or with unexpected scenarios brought me fear. I've been scared, SO unbelievably scared because for the longest time it was like I was physically watching myself disappear.

But lets start at the beginning.  As a kid growing up, my parents strived to make my life as normal as possible.  I participated in many activities and sports, and if I didn't abide by the rules, I also got in trouble like everyone else.  The approach my parents took due to my situation had its advantages and disadvantages, but I believe that living a “double life” at times allowed me to learn how to understand others better by seeing and experiencing those different ways of life.


When I was around nineteen, twenty, and twenty one years old, I went through my “rebellious” stage, but thankfully I overcame that and saw what was really important.  So I got my act together and from then on I took care of myself the best way I knew how.  No matter what I did though, CF had its own agenda.  A year later is when things became harder, and my life as I knew it was about to change big time.  I was told by my medical team that due to the fact that things were becoming more difficult, and I was getting harder and harder to treat with my extremely resistant bacteria, it was time to look into transplant.  Not exactly the news I wanted to hear and definitely not where I wanted to be in life at twenty four years old.  I set up my appointments for transplant consultation and tried not to think too much about it.


Fast forward a few months later, things were changing and they were changing fast.  I went from being able to span treatment of IV antibiotics from 8 weeks down to 4 weeks.  The amount of time I would have to be on them grew longer, and treatment grew harder.  The need for oxygen grew from only needing it at night to then needing it every day, all day.  I couldn’t drive anymore, I felt awful 95% of the time.  I coughed so much, I literally was unable to breathe at times.  I remember gasping for just the slightest bit of air.  An unbelievably frightening feeling.  I’d cough so hard I would crack ribs which then brought on tremendous amount of pain.  As time continued to go on, I was in pain constantly, all over my body from head to toe. I was on 4-5 liters of oxygen, and I could no longer do much on my own.  I was now twenty five years old and everything I did was a true struggle.  My husband or a family member had to be with me at all times.  I needed help doing the simple things we all take for granted everyday.  Getting out of bed, walking to the bathroom or the kitchen. Bathing, getting dressed, and even brushing my hair was a true challenge.  Life as I knew it was no longer.  I would catch quick glances of myself in the mirror and when I stopped to give a good look I saw someone I no longer recognized.  I wasn’t “living” anymore, I was just simply “existing.”  I was slowly dying and my only hope was new lungs.


Going through transplant consultation was quite the experience.  It was a few days long and it took a toll on me mentally.  My husband and I went through all the classes and appointments and it was a lot to take in.  Not only were we dealing with the fact of my current health state and our lack of options, but we were trying to comprehend and take in so much information on a very important subject and decision.  The most nerve racking but anticipated appointment, was my meeting with my transplant doctor.  I already knew him from clinic and I knew that talking with him was going to answer a lot of questions or concerns I had about the transplant process.  He was very direct and honest with myself and Seth which is something I always appreciated from my all of my doctors.  After consulting with my doctor, I was told that due to my current and personal health situation, I was going to be looking at some possible complications that maybe others without my particular issues, wouldn’t have to necessarily face.  My success rate after the first year of transplant, was about 25% less then other CF patients that weren’t dealing with my particular problem.  After the second year, I was looking at a 50/50 shot.   My heart sank and I felt like I was a balloon slowly deflating.  Not only was I already struggling with the complications of end stage Cystic Fibrosis, I was now being told that my only shot at possible life again was “a roll of the dice.”  Unknown, and impossible to predict.

After the transplant consultation I not only had a lot to think about, but a huge decision to make.  Some of you may be curious as to why I would have to even think about whether I would want to proceed with getting a transplant.  I’m sure most of you would think that it should be a no brainer, being that receiving a transplant was the only shot at my life being saved.  I find that the most common misconception with transplant is the fact that many think it is a cure.  Unfortunately, this is not the case.  Receiving a transplant is without a doubt a wonderful gift, but going through end stage CF and transitioning into transplant is ultimately trading one set of problems for another (as the docs would say).  And when CF reaches its end point, your options are next to none.  It becomes hard for people that are not in this situation to fully understand the emotion and thought that goes into this.  During consultation they suggest that when taking the time to make this decision, that it is something that you are sure about.  Going through a double lung transplant is no walk in the park, and you have to be in the right mindset to take on such a life-changing procedure and event.  Before I went through this process I found myself asking the same questions that you may be.  “Why wouldn't someone choose transplant?”  Because when you get to the point of having to either accept or refuse transplant, your only other option is letting the disease take your life.  It wasn’t until I was sick and dying, that I found the answer to that question.  Cystic Fibrosis is what I sometimes like to call the “invisible disease.”  Most of the time we look, talk, and do things like everyone else.  But on the inside our body is struggling every second of every day to just do the simple things.  Then when severe times strike, we struggle to just exist.  Our life becomes unpredictable and eventually impossible to control.  But every day we fight for our life, because it’s just what we do.  It is all we know.  So to answer the question, I believe that some of us do not choose the transplant route because some of us have simply had enough.  Some of us become too tired and beaten down after all that we have been through.  Others find it easier to get back up after being knocked down multiple times, and then some just struggle more.  So I always say that everyone has a different amount of fight in them.  It doesn’t mean or come down to the fact that certain patients dealing with CF are better or stronger then others, I believe that it just means whatever our individual experiences have entailed, we either feel that we have reached our end point or we believe there is more out there for us.


When it was my turn to make my decision, I had wonderful support from my husband and family members.  They told me that whatever decision I chose they would support me.  I didn’t feel pressured into picking one choice over the other because I knew that they knew that this was something I had to decide for myself whether they agreed or not.  When I talk to people about this particular time in my life I always say that it was the most difficult, yet simplest choice I have ever made.  Confusing way to put it, I know.  I was twenty five years old and for as long as I could remember I have always let CF be apart of my life, not something that ruled my life or defined me.  I was never told that I wasn’t good enough or that I couldn’t do something.  I was always told to follow my dreams, and never let CF take those things away from me.  I was born a fighter.  I have never backed down and after everything I had been through and overcome up until that point, I realized that there was never a choice or decision for me to make.  It was just a realization.  The realization that this was in fact my path and just another chapter in my storybook.  Yes the odds were not quite in my favor and I had no idea what I was really getting myself into, but it was in fact MY only option.  My only option at a chance to live and breathe free."

Please join us next week for part II of Real 65 :  Dana's Dream.  

 

 

 -  About Today's Contributor  -

My name is Dana and I am 27 years old. I was born in Philadelphia Pennsylvania, but now live with my amazing husband in beautiful Central PA. 

I am a licensed Cosmetologist which has always been my dream job!  I professionally worked in a salon for many years until my health no longer allowed me to. Now, I do my work for just family members and close friends. I am also a dance instructor. I danced for 15 years as a child, and now have the incredible opportunity to be back as a teacher in the world of dance! Some of my favorite things to do are, watch movies, read, dance, and spend as much time as I can with the people I love! Writing has always been something I have also loved to do and with all my experiences with CF and now transplant, I love sharing my stories with others, in hopes that I can provide hope for others! We need a cure!

You can continue to follow my journey through Facebook by typing in "Dana's Dream Team" which is available for the public to see! I am always so grateful for the continuous love and support! XOXO

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 : An Undeniable Brilliance

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. 

 

An Undeniable Brilliance

Reese, an unstoppable 7 year old with CF.

You can't see the countless hours spent doing treatments, the number of pills taken everyday, or the thick haze left from the nebulizer. The only thing that steals the attention in this photo is the undeniable brilliance of life and beauty that fill it. 

 

 

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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 : 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.