Filtering by Tag: Husband

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.

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.

Real 65 : Lucas & Chrystal

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

 

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

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

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

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

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

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

You might be old with CF if you remember:

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

You might be old with CF if you remember:

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

You might be old with CF if you remember:

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

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

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

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

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

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

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

- About Today's Contributor - 

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

 

 

Be the first to know about what's going on at Breathe Bravely and
what's new on Breathe 3-65!

Subscribe to receive updates and new posts!

SUBSCRIBE -

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.