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.

Real 65 : CyFi Life Interview with Katie Malik

The following is an interview from CyFI Life, a website that highlights incredible individuals with CF and how they are passionately living. This specific interview highlights Katie Malik, a fellow opera singer who lives and thrives as a professional musician living with cystic fibrosis. Katie is living, singing, and breathing proof of just how powerful singing can be. 

 

Interview with Katie Malik by CyFi Life.

Get to know Katie and how singing has played a significant role in her life with cystic fibrosis.

Original content found on www.Cyfilife.com and written by Martin: https://cyfilife.com/2017/06/18/katie-malik/

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 : A Meeting to Remember

Session II of sINgSPIRE is underway with fresh new students and several continuing on from the first session! It's an incredible group of participants and we are so excited to see the amazing progress as students take part in their weekly lessons with their assigned sINgSPIRE instructor. 
 

Zoom, Zoom.

All lessons a part of sINgSPIRE thus far have been done via a platform we use called, "Zoom." It is a video-call service that allows us to see and hear each other with minimal delay and good sound quality. This platform allows sINgSPIRE's participants with CF to take part in the program from all over the United States as our instructors are based out of Sioux Falls, SD. This platform also allows participants with CF to remain in their comfortable environment and do lessons from the comfort of their own home. What has been most amazing are the meaningful relationships between the students and their instructors that so easily have formed through a computer screen while actively taking part in learning the art of singing. 

The Meaningful Meeting

Because our sINgSPIRE students are from all over the country, that makes it difficult for the student and instructor ever to meet face-to-face in the same location. But, this past weekend, our sINgSPIRE instructor, Maren, was traveling for a wedding to the location of one of her current sINgSPIRE students. And a pretty cool thing happened - they got to meet face-to-face and sing together in the same location. I am positive it is a day they both will remember always. 

What we get to share by being a part of sINgSPIRE is pretty amazing and we feel pretty lucky to share this life-changing experience with our participants. We are certain sINgSPIRE's impact will have lasting effects on everyone who is connected to it: student, instructor, supporter, you.  

Don't forget, if you or your child is interested in being a part of sINgSPIRE please sign up via our sINgSPIRE enrollment page. 

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 : Healthcare & CF

The topic of healthcare in our country has always been a difficult subject. It has been even more difficult to perfect and put into practice. Healthcare has been on the forefront of everyone's mind these past several months and with so many differing opinions, experiences, and sources reporting, it's hard to clearly decipher the basic elements of the current BCRA and the impact it would have on the CF community if put into practice. 


Here are some links concisely explaining the BCRA and why this topic is so important to the CF community provided by the Cystic Fibrosis Foundation:

Priorities for the CF Community in Healthcare Reform

Senate Healthcare Bill & The Impact on people with CF

Why We Advocate

Policy Principles

 

Help give voice to the CF community right now:  
          Contact Congress

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.

Giving Voice to CF - Say Anything...Jewelry by Stephanie Wilde

The most beautiful and meaningful thing about Breathe Bravely is that so many different and strong people have helped breathe life into this organization and made it all it is today. 


Stephanie is one of those people and has been a relentless advocate for Breathe Bravely from its beginning. Stephanie's own dream has been built on telling people's stories and giving them voice. 3 years ago, Say Anything...Jewelry by Stephanie Wilde joined forces with Breathe Bravely and designed its first jewelry line to help give voice to CF. Her incredible designs and meaningful work of artistry have continued to inspire and grow with Breathe Bravely. 40% of sales from the Breathe Bravely jewelry line go to support the mission of Breathe Bravely.

Last week, new designs were added to the exclusive Breathe Bravely jewelry line! Have you checked them out and ordered yours? Limited and one-of-a-kind pieces available in-store right now or order your exclusive Breathe Bravely design by Say Anything...Jewelry by Stephanie Wilde online or via phone!


Fun Facts about the Breathe Bravely Jewelry Line

  • 40% of the sales from this line go to support Breathe Bravely and their mission of Giving Voice to CF.

  • Say Anything Jewelry has a custom Breathe Bravely stamp with our unique logo!

  • Each piece is handmade. Each letter or logo is hand-stamped character by character by Stephanie herself! Making each piece unique and one-of-a-kind. 

New Items:
Collar Stays for the men $62,
Large Rose earrings $40,
Bracelet with teal leather $44,
Small Rose earrings $36.

Call 605-695-3997 to order today!  Limited quantities of each are made/ready to ship or to pick up in store. Shop now online! Use code LOCAL to save $5 on shipping. Make sure to leave your phone # so we can call you when items are available for pick up! Stop into the store in downtown Sioux Falls, order online at www.sayanythingjewerly.com, or shop Etsy. 

A deep and heartfelt thanks to Stephanie, her generosity of time and talent, and helping Breathe Bravely give voice to cystic fibrosis.

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 : Why We Walk

Walking is something that most all of us take for granted and the power of a single step never really crosses our mind. But a simple step for some can symbolize so very much - like for people whose lives have been impacted by cystic fibrosis. 

Great Strides for CF is so much more than just a walk. It's a significant act of empowerment, of tenacity, and of hope. Within each step lies an untouchable determination dedicated to fighting for those with CF. Fighting to give everyone impacted by CF another day to pursue and live out their dreams uninhibited by a disease vying to steal every breath. 

The Cystic Fibrosis Foundation was established in 1955 and has been at the forefront of drug research and development - leading to decades being added to the lives of people with CF. Because of the fervent support of friends and family of those with CF, the CF Foundation has been able to invest in the futures of those living with the disease - being on the cutting edge of research and a cure. Without this continued support and the creation of these life-extending therapies, many of our lives would be immensely different. It's safe to say that some of us may not be here today without such support. Each step that has been taken in the last 30+ years has made a significant impact on each life that is affected by CF. It is for each step we are so thankful.

But we are not finished.

Life-changing therapies and drugs are being created at this very moment. Drugs that could potentially give us the possibility of more steps. Walk with us this Great Strides season. Take a step for CF and every person whose life has been changed because of the disease.

Learn more about the CF Foundation.
Learn more about Drug research and the current Drug Pipeline

To learn more about Great Strides or donate to a team click: Great Strides Team 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.

Clearly Invisible : CF Adventurers

This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

The CF community is comprised of passionate and driven individuals that are dedicated to changing their community for the better. This community is made up of tenacious and caring people who have been diagnosed with CF themselves, family, friends, and individuals who have been touched in some way by CF. Brad Benson, the creator of CF Adventurers, is no exception. Learn about his passion project and how he's making an impact on the CF community. 

"I am the creator of the CF Adventurers website. (www.cfadventurers.org) I myself do not have cystic fibrosis. Cindy, a friend of mine since our days at the University of Rhode Island has a now 13-year-old daughter, Amanda, who has CF. I knew about the disease in its broad outlines prior to finding out about Amanda’s diagnosis, but committed to learn much more as a result of her situation. One thing that I had no awareness of was the fact that people with cystic fibrosis cannot be around each other in close proximity due to cross contamination concerns. This really struck me as poignant and something that would be particularly difficult to deal with. Even now, years after I learned about this aspect of CF life, I find it almost impossible to really understand. So I decided to try to do something about it. CF Adventurers is the result of that effort.


As I stated earlier, I do not have cystic fibrosis. I do, however, have a disability. I have spina bifida and use a wheelchair to get around. Not an ideal circumstance, perhaps, but who among us lives in ideal circumstances, free of difficulty. It is also useful to remember that one’s own issues and problems are not necessarily the toughest challenges people face I found, when I learned that people with cystic fibrosis cannot be around each other without risk to their health, that it made me consider my own situation. I feel no great need to be around other people with spina bifida. But I have the option if I want it, with no risk to me or others I might meet. People with CF do not have this option, and that fact must be hard to come to grips with. It is my hope that CF Adventurers can help bring members of the CF community together, in virtual space even if not in person."

Take a moment to check out CF Adventurers - "This website is meant to be a fun, safe place for people who have cystic fibrosis, their friends, family members, and others to gather. Here, people with CF can chat, experience online adventure, and share thoughts, feelings, hopes, dreams, plans, fears, and strategies... this site is intended to serve as an alternative way of meeting and interacting, even if not in person.  Life should be about options, and CF Adventurers is here to give people with cystic fibrosis the option of connecting online."

 

 

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.

Real 65 : Project CF Spouse

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 impact of CF extends far beyond the individual whom is diagnosed with the disease. CF transforms not only a single person but an entire community of friends, family, loved-ones, and spouses. And with a complex disease that can be so incredibly isolating, it's more important than ever to connect and find support in each other. And that is just what Megan Barker is doing. It is with great excitement we share today's guest post written by a stunning example of what it means to love and live as the spouse of someone with CF. People like Megan are making our CF community stronger and more tenacious through a project she founded called "Project CF Spouse." It's a great honor to share her story:

"I think it was around the second or third admission my husband had after we started dating, that I realized that my friends didn’t quite grasp the realities of dating someone with CF.  Questions like “He’s in the hospital AGAIN?” were asked multiple times.  It was hard for me.  I didn’t want to burden him with my fears, as I knew he had his own with each admission and sickness.  I had made lots of friends in the CF Community, mostly parents to kiddos with CF, but not any other spouses.  I really wanted to find someone who I could vent my fears and frustrations to who understood them. 

After a search on the Internet one day, I came across a blog owned by a CF Wife!  I was elated!!  After messaging back and forth, Amanda and I became fast friends!  Shortly after connecting with her, I was given the names of another CF couple by a friend.  I reached out to Kayse and much like with Amanda, a friendship formed fast!!  That’s one thing that I have really seen with the CF community, we are very close!!

I began to connect with other wives and decided to make a group on Faceboook that could serve as a support group for all of us!  It was a great place to ask questions, vent frustrations or just have support from someone who understood.  The group grew and grew!!! It was great!  What started with about four ladies, had grown to over one hundred members!  Each of us were at different places with our journeys with CF and eventually emotions divided the group and it was dissolved. 

After being a part of that group, I saw how important it was to have others who related to the CF Spouse-world.  I spent a lot of time talking with others to see what the most important part of that original group had been and from there, began to lay the groundwork for what would become Project CF Spouse.  In late 2016, Project CF Spouse, a non-profit organization, was established. 

I wanted to be able to take the experiences gained from the amazing women I had met along my journey and grow that into an organization that was designed to provide education and resources, in addition to the support that was so valuable.  I knew that there were lots of new people starting their journeys with their CF spouse (thanks to invaluable research and medications) and I wanted us seasoned spouses to be beacons of hope for them! 

There is so much that I see this organization being able to do!  Our amazing Board has put together some great goals for us and I look forward to working to bring those to fruition as well as continuing to look for ways to use this organization to help anyone who needs it!"

 

"Project CF Spouse is a nonprofit dedicated to educating and supporting spouses of people with CF. The Impact Grant will be used to grow the 150-person group, which started on Facebook, into an organization that will provide educational resources and access to other spouses and people with CF." - Cystic Fibrosis Foundation from "Impact Grant Awardees" Please visit Project CF Spouse on Facebook for more information and to join. 

 

- About Today's Contributor - 

Megan Barker is the Founder of Project CF Spouse! Her husband, Ty, has CF and he is her hero! He was diagnosed when he was 11 after having lots of respiratory issues. He just turned 39!! They have twin little boys who keep them hopping! Megan is a respiratory therapist, which is very handy when you are married to someone with CF!

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.

Real 65 : Open Doors

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 greatest of adventures lead you right to where your heart is happiest. A quick spontaneous trip lead to waking up to my favorite people this past weekend. That means some extra med time support - good thing I packed extra new tubing so everyone could get in on neb time. 

Thanks to Kendra for snapping this priceless photo!

Thanks to Kendra for snapping this priceless photo!

I always wonder what their little eyes see and minds think when they see me this way. My first instinct has always been to shut the door and hide myself away from everyone while doing treatments. But a part of sharing my honest life is keeping the door open and letting those I love see and experience with me this life with CF. 

To follow more of Ashley's personal account of living with CF check out her personal blog.

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 : A Love Story

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. 


CF and Love - it's a complicated, complex, and at times an incredibly heartbreaking journey. But, it also is what makes every breath all the sweeter and so very meaningful. It infuses hope into the past, present, and future.

Today, we are sharing a moving and honest post written by Jessica Bean from her personal blog on Health from the Heart. Jessica, a tenacious woman with CF from Australia, poignantly shares the impact CF has on a relationship, on thinking about the future, on what a life-saving therapy means, and on living with fervent hope. Please enjoy her powerful words.

Orkambi: A Love Story (Part 1) by Jessica Bean

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.

Clearly Invisible : Fighting the Flu

This segment of the blog is dedicated to shedding light on the invisible side of CF- striving to spark dialogue, cultivate understanding, and encourage compassion between all of us.

We are in prime Flu season and this time of year can be a bit unnerving for people with CF. While there's no guarantee I won't catch the flu, I take some extra precautions and implement some thoughtful habits to help protect me throughout this season. Here's my advice for getting through the season: 

  • Wash your hands and use hand-sanitizer often.
     
  • Keep it clean – use a disinfectant daily to keep your living environment clean. Wipe down door handles, light switches, faucets, remotes, keyboards, fridge handles, etc. Keeping these high traffic areas disinfected daily will help the spread of compromising germs that could be detrimental to a person with CF’s health – or anyone whose immune system is compromised.
     
  • Disposable hand towels – It may seem like a small thing but replacing your cloth hand towel in the bathroom with disposable hand towels can help deter the spread of germs. 
     
  • Vitamin D – Find ways to get some extra Vitamin D which during the winter months quickly depletes because of our increased time indoors and lack of sunlight. Make sure to take all your vitamins and eat vitamin rich foods. It’s important for people with CF to take in extra vitamins as our bodies do not efficiently absorb vital nutrients.
     
  • Make weight – My CF team has a catchy phrase when it comes to CF and extra weight: “more fluff, more puff.” I know during Influenza season it’s important for me to be dedicated to maintaining or even gaining weight so my body can better fight off infection. Studies have linked increased BMI to increased or stabilized lung function in CF. A large portion of the CF population has difficulty maintaining and gaining weight which has significant effects on the body’s ability to fight infection and maintain lung function.
     
  • Sinus rinses – Daily sinuses rinses help clear out the sinuses and help flush away possible infection that was breathed in during the day. If I have been around a large crowd or in a busy public area I will make sure and do a sinus rinse as soon as I am able.
     
  • Get adequate rest and stay hydrated – A person with CF uses a significant amount of energy just to breathe and do basic everyday tasks. Becoming worn down and dehydrated can be detrimental to our health and can quickly spiral into an exacerbation.
     
  • Get vaccinated and share the importance of those around you getting vaccinated.
     
  • Keep the distance - during peak flu season be cautious about being around a lot of people and in busy public places. Take the appropriate precautions if heading into crowded areas and weigh the risks of needing to go out. It’s best to keep your distance from large groups of people and places you know may be filled with deadly Influenza germs. Weigh the risks and benefits of heading out and maybe grab a mask, hand sanitizer, and try not to touch your face.
     
  • Speak up – Don’t be afraid to remind people that covering a cough, exposure to illness, and hand washing can mean life or death to people with compromised immune systems – especially respiratory issues like CF. Staying away from people who are sick is the best way to avoid infection.
     
  • Stay connected – Influenza A can be deadly for people with CF. It’s important that if you feel any symptoms to call your clinic or go in immediately. 


     

Today's entry is written from the perspective of Ashley Ballou-Bonnema.

Please consult your CF care team if you have concerns about Influenza A or if you want to make any changes to your CF regimen. For more information about Influenza and CF read "Influenza: Learn How to Stay Healthy" from the Cystic Fibrosis Foundation.

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 Testament to 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. 

The complexity of CF extends far beyond the sticky mucus that fills the lungs, pancreas insufficiency, and skin dusted with salt- it's felt within every emotion, relationship, and mood. Living with CF can be both mentally and physically exhausting and that can often times come out upon friends and family. Today's guest post by Chrystal is an honest and real portrayal of the struggles of living with CF and the impact it can have on those closest to her. It also is a great testament to love and always finding gratitude for those who are willing to share in the journey of living with CF. 

"It's happened again.  I'm at the end of a long day of family activities and the exhaustion crept up on me...until it pounced suddenly and I snapped.  I think any mom can relate.  The three year old wants to play dress up with jewelry and I'm too tired to sit up straight.  Let alone see straight to fix the tiny clasp of a necklace.  She doesn't understand why I'm short with her.  She tries though.  She'll ask if I need a therapy, or she'll put her little hand on my chest and close her eyes for a few seconds.  And then announce that I'm all better.  So cute.  

There's a part of me that hates that she has to know I'm sick.  When I'm struggling to breathe or when it hurts to inhale deeply, she watches me closely and seems to understand.  Maybe it's a gift I'm giving her, the gift of empathy.  Of seeing another person in pain and stopping what you're doing so that you can sit and be with them.  

Then there's my husband.  What a saint!  When CF literally takes my breath away and I need a therapy immediately, I can get pretty testy with anyone who gets in my way.  It just feels so urgent, the need to breathe.  And it is urgent.  But I've found there's a difference between what's urgent and what's important.  In the big picture, my need to breathe is not any more important than his need to feel appreciated.  

Even though it means sacrificing his needs at that moment, he consistently does whatever i need so that I can get my therapy done.   I find cf to be a task master at these times, my lungs demanding the relief that comes with airway clearance. So uncompromising, and potentially so hard on a marriage where compromise is essential. My dear husband will postpone his plans if our little girl isn't in the mood to sit through one of mommy's therapies.  They will leave the house so I can focus and do my best therapy possible.

What tears me up is when I catch myself snapping at him because, even though he's sacrificing his plans for the evening, I think he's not moving fast enough.  I forget his very important, though seemingly not urgent, needs.  In my haze of breathlessness I overlook the fact that he needs to hear an encouraging word from me.  A grateful word.  A long, heartfelt embrace.  Those things speak to him and meet his needs.  Even though, in the moment of exhaustion, I feel like I barely have the energy to breathe through my last therapy of the day.  Especially then, I need to pause, look him in the eye, and tell him how much he means to me.  How I couldn't do it without him.  That I like his sense of humor.  That I like him, period.

When we were dating, I told him I might not live long enough to celebrate any meaningful anniversaries.  Like a 10 year anniversary.  My thought was perhaps he would want to choose a different spouse that he could more likely grow old with.  His response, which I'll never forget, was "I don't care if I only get you till you're 30 or 40 or 50.  I want you."  Wow.  So sweet.  He is still the sweetest man I've ever met.  And the most forgiving.  

There are no guarantees in life, and I've learned that first hand.  I thought it was guaranteed that I wouldn't make it to 40 years old.  I thought I would never have a child of my own.  And I thought I could never respect and adore Lucas more than I did when we were dating.  But I find my admiration growing with every selfless act of my faithful husband.  Thank you, Lucas!"

- 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 Chrystal's other contribution to Breathe 3-65 - Chrystal & Lucy

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.