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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.

Real 65 : Voices of CF

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

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

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

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


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

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

Real 65 : Dana's Dream Part I

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

 

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

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

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


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

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


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

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


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


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


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

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


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

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

 

 

 -  About Today's Contributor  -

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

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

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

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

Real 65 : A Never-ending Love

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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.

Real 65 : Chrystal & Lucy

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

 

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

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

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

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

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

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

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

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

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

 

- About Today's Contributor - 

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


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

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

Real 65 : A Daily Dose

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

 

 

A Daily Dose

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

 

 

 

 

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