Filtering by Category: Clearly Invisible

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.

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.

Warmest Wishes

As we look back on 2016, Breathe Bravely is immensely grateful for your unwavering support and your enthusiastic spirit for our mission. Thank you for giving voice to cystic fibrosis and helping us breathe bravely!

2017 has the makings to be an extra special and impactful year for Breathe Bravely, and we couldn’t do it without each of you. From Breathe Bravely to each of you – warmest holiday wishes and a happiest new year!
 

Want to make year-end contribution to Breathe Bravely? There's still time! Donate now! A reminder that Breathe Bravely is a 501(c)3 organization and your contribution is a tax deductible.

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 : A Season of Difficult Decisions

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.

It’s that special time of year when we come together to celebrate, sharing laughter, traditions, and memories with our family and friends. Our calendars are filled with holiday celebrations and time with those we love. This time of year holds so much joy and excitement. But for many with chronic illnesses like cystic fibrosis, this time of year can cause a lot of anxiety and disappointment, and it can be filled with heartbreaking decisions.

People with CF are fighting today for the hope of more tomorrows. Sometimes that fight includes making the difficult decision to not attend a holiday celebration due to the risk of compromising their health. You see, this time of year paired with a room bursting with loved ones can be a breeding ground for germs and sickness. Things like the air exchange in a room, how many people are sharing the same air, and what might be thought of as a simple cold or the sniffles can be detrimental to the health of someone with CF. An uncovered cough and the sharing of unwanted germs can lead to days and weeks spent in the hospital, hours of extra treatments, course upon course of potent antibiotics, and the possibility of fewer tomorrows. 

So, how can you help the person you love with CF during this beautiful and memorable season of celebrating? Show your support by:

  1. Letting the person with CF or their parents know if you or anyone attending the celebration have been sick. This includes the common cold or a little cough.
     
  2.  Reminding the person or the parents of the child who may have to make that difficult decision that they are not alone. It’s often easier to make an emotional and difficult decision if we know we have your support and understanding. 
     
  3. Washing your hands more often and covering your cough when your loved one with a compromised immune system (in this case your loved one with CF) is present.

There’s nothing quite like the heartbreak of having to make the decision to miss out on sharing these special days with the ones you love. Our hearts race with anxiety as we weigh the risks of exposure and have to make that difficult decision, mulling over the unfair realities of a life with CF and the perceived disappointment of those we love, if we cannot commit to attending a celebration. Speaking as someone with CF, more than anything we do not want to miss out on such a special time of making new memories or be vacant from the irreplaceable presence of love shared with our friends and family. But, we must be protective of every breath we are given - all in hopes of the chance to spend another holiday sharing in the beauty and love of the season.

 

 

 

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.

Clearly Invisible : Cross-infection and Community

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.

324.5 million people live in the United States. The majority of us are seeking to find a community of people in which we belong - sharing similar experiences, thoughts, and friendships. These communities are bonded through deepest empathy - enduring similar journeys of struggle and triumph.

Just 30, 000 people in the United States live with cystic fibrosis. It’s an incredible community all its own, and like so many things that bring a community together CF is no exception. But, did you know it is recommended that people with CF have no physical contact or maintain at the very least a distance of six feet between each other? It is because of the possibility and risk of cross-infection.

Why is cross-infection so important? 
People with CF harbor certain germs and bacteria that can be extremely detrimental to the health of another person with CF. Bacteria and germs in people with CF can vary from person to person, making exposure to one another an important factor in limiting the introduction of new bacteria and germs that could have significant and irreversible effects.  

Isolation & Community
These guidelines have just recently come into practice over the last several years, as scientists and doctors learn more and more about CF. CF is an invisible disease to most people but what is even harder to see is the isolation it creates from the very community of people who truly understand and embody life with the disease. It’s a cruel and unapologetic part of the disease that thankfully has been lessened by today’s use of social media and Facetime – allowing deep friendships to form and a foundation for unprecedented empathy and support. We at Breathe Bravely feel extremely privileged to be a part of the CF community – a place where all who are impacted by the disease can come together and know they are never truly alone.

 

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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.

Clearly Invisible : Stormy Skies

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 sky above is a vibrant blue with the most picturesque clouds effortlessly floating across its expansive canvas. The sun shines brightly overhead embracing the earth below and warming everything it touches. There’s a gentle breeze – enough to make the prairie grasses sing a soothing sigh of contentment. In that moment all seems perfect.

But how quickly things can change. A storm is coming. The wind switches and the once white clouds become a thick shield of gray – swallowing up the sun’s warming rays. The atmosphere is charged and swirling overhead. The storm is gaining momentum with each passing moment. 

Just within a matter of hours things can change quickly. This is life with cystic fibrosis. Within just a few hours a person with CF can go from feeling great to feeling sick. An exacerbation or infection can come on quickly and sometimes without any forewarning. Such a quick onset can mean having to cancel plans, dedicating time to extra treatments, and visits to the doctor with the potential for IV antibiotics.

With CF this storm is often silent to the outside world. A person with CF may look and act like their usual self but underneath there may be a storm brewing or one actively raging. It’s an invisible storm that can cause irreversible damage and devastation. There’s always the hope that the storm will only bring light rain with a rumble of thunder and not the destructive torrential downpour of an unyielding storm. 

 There are always invisible storms brewing in a life lived with cystic fibrosis. But that same life also has its days that the sky seems endlessly blue without a cloud in the sky and the day finishes just as clear. Those days are deeply cherished.

 

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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.

Clearly Invisible : The Unseen Hours

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.

 

Take a moment and think about your busy life. What time did you get up this morning? Did you fall into bed after a busy day and have to get up extra early for a morning commitment? Most people are free to plan their day according to their liking and commitments, but for people with CF there is much that happens before, after, and in-between the “goodnights” and  “good mornings” just to stay alive.

At the close of an eventful evening spent with friends, when everyone parts way to crawl into their own warm beds for a restful night, many individuals and families with CF know they’ve got another hour before they can think about any shut-eye. When a rambunctious child pleads with their parent to let them play for just a little longer, the parent knows that after that “little bit longer” an Airway Clearance Therapy still awaits them. The morning alarm is set extra early to fit another treatment in before work, school, and taking on the usual demands of a day. Instead of getting some fresh air and a coffee during that afternoon break at work, it is spent doing an ACT. It’s essential that people with CF do several treatments a day of ACT (Airway Clearance Therapy) to keep their lungs most healthy: working most efficiently, loosening thick sticky mucus, and fighting infection. An example of ACT would be a VEST therapy and a neb treatment. The number of treatments and type of ACT done per day varies based upon the unique individual with CF and their specific need. 

So, when you fall into bed tonight after a long and beautiful day, take a deep breath filled with gratitude. Then, take a moment to remember all those still awake, fighting for another beauty-filled day. 

 


Stay up to date on all the latest happenings of Breathe Bravely! Follow us on Instagram and like our Facebook 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.

Clearly Invisible : Danger

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 world is a big beautiful place, fraught with possibility. We awake feeling invincible and ready to take on the adventure of life. But, many do not see that woven within the beauty that surrounds us are dangers unseeable to the eye. Dangers that could cause great harm to someone with CF. Dangers that to most people might cause a pesky cold or irritating virus but for someone with CF could cause weeks in the hospital, months of extra treatments, endless antibiotics and their side effects, and irreparable lung damage.

The door handle touched by an unwashed hand, an uncovered cough, or a forceful sneeze can all pose severe risks to someone with CF. A person with CF's immune systems is highly compromised and their lungs are a perfect environment for dangerous bacteria to thrive. It is easy to dismiss the dangers of a cold, cough, or unwashed hands because we cannot directly see the effects of their microscopic deadly presence. But they are there.

 

People with CF spend countless hours a day doing treatments and taking fistfuls of medications to stay as healthy as possible. They dedicate themselves to hours of fighting CF for a chance at another tomorrow. You can help in that fight. Please wash your hands, cover that cough by coughing into an elbow or shoulder, and staying home when sick. It truly could save a life. 

 

To learn more about germs and CF read this personal blog post from Breathe Bravely: Sharing Is Caring.

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 : The Unseen Side of CF

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

 

Years ago, the effects of CF would manifest themselves visible to the outside world, but in today’s world there are very few telling effects of the destructive disease. CF is considered an invisible disease. Even in the end stages of the disease, CF might only make itself apparent through the need of being tethered to a constant supply of supplemental oxygen and IV polls. But without those accessories we would seamlessly blend into any crowd.

It may be one of the most difficult things about living a life with CF. Even thanks to small pre-portioned antibiotic boluses, we can carry on seemingly normal lives. CF manifests itself beneath the surface of our skin and blindly away from the eyes of the mainstream world. It makes it difficult for others to see the destruction and seriousness happening within our bodies. Thanks to social media and some passionate people willing to open their honest lives living with CF to the world, the invisible side of this disease is being exposed and shared - something that takes great bravery and strength. It also invites loved ones into the unseen side of CF and allows ourselves to freely share who we are.
 

What we see on the outside never tells the entire story of who we really are - for any of us, whether CF is a part of that equation or not. The greatest gift we can give each other is the gift of empathy, and that comes from investing and sharing who we really are with one another. We may not be able to truly understand someone’s life or what they’re going through, but we can embody what those emotions and experiences feel like. We are all connected by the feelings and power of pain, heartache, joy, and happiness.

Here’s to opening the world to the invisible side of CF and bravely sharing our voice. What do you see when you see CF? We'd love to hear from you.
 


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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.