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    The Fighters Chronicles

    The Fighters Chronicles - Shealie Rain

    The Fighters Chronicles - Shealie Rain

    My Story

    This is my daughter Shealie Rain and she is a CF warrior. She was born October 31, 2012 sweet as can be and always smiling. I named her “Rain” because I want her to know that no matter what’s going on in life (whether it’s raining or it’s sunny, good or bad) you have to keep a good attitude no matter what life throws your way. 


    When she was born she was diagnosed with a meconium ileus, which meant she was having zero bowel movements. At eight days old they had found a blockage and said they had to do surgery to remove part of the intestines and give her an ileostomy bag. She would have that bag for probably a year and later they would remove her whole colon. I am a single mom and I am so glad for all the family and support that I have because that was hard to hear. But of course I said yes, save my baby, do what we need to do to save her life. On November 8, they took her way. At this time, we still had no idea that she had CF. Playing the guessing game with your child’s health and life is horrid. After about 20 minutes she went back for surgery. I had a nurse named Casey come to me and tell me that she had Cystic Fibrosis. The one thing she said not to do was to Google CF and that they have better updated information and anything I needed to know, she would tell me. Those words will be with me forever. After speaking with Shealie’s nurse, her doctor and surgeon came out and informed me there would be no surgery today. I was confused and immediately responded saying, “no you told me this needed to be done, why why can’t you do it?” He said she pooped! Her blockage was finally removed naturally so they didn’t have to do surgery. They did give her a femoral line IV for nutrition because at this point, she had been seven days without eating or receiving any kind of nutrition. I have never been so happy and so sad at the same time. It was so hard to keep it together. I isolated myself just to stay focused on her. I didn’t call any of my family or my friends. I wouldn’t even let anybody come up to the hospital except for my mom. I was trying so hard to keep it together. I had to focus on her and whatever she needed. I felt I couldn’t afford to be an emotional basket case. I was and still am so thankful for my mom and I don’t know what I would do without her. We weren’t out of the woods yet; she was still very malnourished and very swollen. Although, her belly measurements had gone down, she was still so malnourished. Lucky for us, she was and always has been a really good eater and she didn’t waste any time doing so. When they gave her first bottle she ate it all  with no problems. She ate so much we thought she might get sick. I still wanted to nurse (and had been pumping the whole time) but we were worried that she would not latch on. Much to my surprise she did. Shealie began taking enzymes which would allow her body to break down food and her body to absorb the proper amount of nutritiants her body needs. On top of the enzymes, she had to start taking daily  vitamins and start daily nebulizer treatments. After a month in the hospital we were finally able to go home. The nurses there with me were so amazing to us. One of the nurses’ is a good friend of our family and later told me there were several times that we could have lost her. I know I knew that was a possibility but I also knew Shealie Rain was and still is a fighter. 

     

    Shealie Rain is five years old now. She is very passionate, very friendly, very personable, very caring, and very organized. Shea loves to dance like a ballerina and she doesn’t care who’s watching. She will feel the music and will just move with such grace (sometimes) and passion. She loves people and loves helping anyone in need. She is caring and thoughtful. She loves playing and talking with people. She has never met a stranger, she’s always met a friend. I am known to be quite clumsy and every time I stub my toe or hit my head, Shealie seems to always make it a point to ask me if I’m OK or if I need her help. Her need to be organized seems to contribute to her ability to stay consistent with her daily medications and treatments. She hangs up her clothes, organizes her shoes by pairs, makes her bed, brushes her teeth, takes her medications, and does her treatments without having to be asked. Her treatments aren’t always fun and she doesn’t always like doing them. It causes her to get upset at times and she has to cry it out (who wouldn’t?) but she straps on her vest, wipes her tears, puts on her favorite t.v. show, and does what she knows she has to do. She is very responsible with her medication and if someone forgets to give them to her she will gladly remind you. If she’s playing hard and needs her puffer she can recognize she needs and will tell you. When you ask her what she wants to be when she grows up she will tell you a doctor, but she does not want to work around blood.  She says she wants to help people and wants to be a doctor to her doctors so when they get sick, she can help them feel better. She is as strong as they come and I am so thankful, lucky, and proud to be her mom. 



    Photos Taken by Kevin Wurm

    THE FIGHTERS CHRONICLES - MEGAN BARLOW

    THE FIGHTERS CHRONICLES - MEGAN BARLOW

    FIGHTER CHRONICLES MEGAN BARLOW

    MY STORY

    My name is Megan (@the.salty.cf.artisan), and I was diagnosed with Cystic Fibrosis at 5 years old. Late, I know, for CF, but I hadn’t had many lung issues as a child. Shortly after, I was thrown into the thick of the CF regimen, started on enzymes, the vest, and on nebulizers. But what I also started on, was sports. Whether or not my parents knew the positive impact that would have on my health, I don’t know. But I became my CF doctor’s “star patient,” contributing my good health to how active I kept myself. I played softball, I played lacrosse, I ran track, I swam. You name it, I did it.

     MEGAN BARLOW

    My good health and awesome sports regimen stayed true through high school, as I became more independent with my health and lifestyle choices. Playing varsity sports 6 days a week, 3 seasons a year kept me healthy and out of the hospital, and for that I am fortunate. Many people didn’t even know I had CF, or what was really involved in my day-to-day life to keep myself healthy unless they were close friends and I let them into that part of my life.

     

    When I went away to college, that was the first time I found myself fully responsible for my health. I struggled, going up and down (for my standards), adding in new meds, but eventually finding my stride with ultimate frisbee and longer-distance runs.

     

    But this past year, at 26 years old, I finally had to face the reality of the hospital, as I have now completed 2 sets of IVs since November, treating the MAC infection I’ve had in my lungs since early in college. As much as I try to control my own outcome, fighting hard with treatments and exercise, there are days I have to remind myself that I am not capable of controlling everything. I can continue to fight hard, and that’s what is in my control.

     

    What I have also found to be under my control, is fundraising to find a cure. The saying "do good, feel good" really is true. About a year and a half ago, I started making bracelets for myself and my friends while I was on my vest. The time was otherwise wasted, so why not put it to good use? Since then, I have raised over $8,500 for CF research through selling my jewelry. It gave me a new outlook on treatment time, hours every day that can seriously be a bore, and it made me excited again. Since I graduated college, I really have tried to get more involved in fundraising for CF. I had watched my mom do it for so many years, but it finally hit me, why should I expect anyone else to put in the work towards this cause, if I'm not giving it all myself? I've become more involved in multiple CFF events and plan to see how far this jewelry-making endeavor can take me.

     

    But, overall, I contribute my 26 years of good health to being diligent about my treatments and exercise routine. Find things that excite you for both! I urge everyone with CF to find their stride, stay active, and keep fighting. On the hard days, remember that as long as you keep fighting, there are ALWAYS brighter days ahead. Stay strong always, #saltysquad.

    Connect with me on Instagram

    The Fighters Chronicles - Nicole Turple

    The Fighters Chronicles - Nicole Turple

    MY STORY

    My name is Nicole, I'm 26 years old, and I am a Cystic Fibrosis warrior. Diagnosed at age 4 my parents had no idea what Cystic Fibrosis was. All they knew was what the doctors told them,  "Her lungs are bad, she's terminal, and she likely won't  live to see her teenage years." Many people can't remember things that happen when they're that young. But I do. 

    I remember being told they found out why I cough so much and why I always get belly aches. I remember being told I had to start taking pills, and lots of them. I remember being told I had to stay in the hospital for a sleepover, but I wasn't allowed to come home until I learned how to swallow pills. I remember the needles. So many needles. Blood work and IV's, beeping machines and oxygen masks. I remember being alone. Alone with nurses and doctors who became like family. And I remember being scared. Being so young and being told that you're never going to get better? That's scary, and it wasn't something that anyone sugar coated. That's what made me who I am today. 

    At age 16 I was also diagnosed with Diabetes. My pancreas just really doesn't like me! My other illness you ask? On top of CF, and being diabetic, I suffer from anxiety, depression, and severe malabsorption syndrome, all for which I take medications/needles for. Around 100 pills a day actually, and about 5-7 needles. I've also had over 150 hospital admissions, 4 sinus surgeries to remove nasal polyps that continue to grow inside my nasal cavity, a broncoscopy to suck mucus out of my lungs and get a good culture, tonsils removed, tubes in my ears. I've had several feeding tubes to keep weight up while I'm sick, as well as NG tubes that go from my nose to my stomach which gets pumped with medicine to help my digestive system when it just doesn't want to cooperate; and my most favorite surgery - my port a cath insertion! Having a catheter in my chest is my SAVIOR. No more collapsing veins while trying to get an IV for my long-term antibiotics. It's there, it's permanent and it's easy as heck to use. In fact, I've taught nurses how to access it while in hospital, and I also do my own flushes every month to make sure the line is clear from blood clots. 

    CF makes you smart, you know. A lot of my family and friends often treat me as if I'm a nurse. Always naming off symptoms, and asking my opinions. Because they know 'Nicole has been through it all!' 

    I would love to become a nurse and help others but I wouldn't want to risk my health or anyone else's so I chose a different path in life. I didn't graduate with my friends on time as I was sick and living on my own trying to keep a full-time job to pay bills. But I went back and graduated from the Nova Scotia Community College with my High School diploma. A couple years later I made the choice to enroll in college. "What's the point," they said. "What if you get too sick and can't finish?" they said. My response: "But I can." And I did! I enrolled in the Culinary Arts program at NSCC and I graduated with honors, and second highest in my class. I competed in a Culinary black box competition and brought home a silver medal. And I walked across that stage, received my diploma, and proved all the doubters wrong. I moved forward with my culinary career for a couple of years but then it got hard. Hot kitchens, long hours, etc. So I decided to switch my path of life and find a job that wouldn't be so hard on my health. I then became an income tax preparer and office administrator, which i have been doing since. Just because I get sick often and have a disability does not stop me from working. I just had to change what I was doing to make sure my health wasn't being jeopardized. 

    My boyfriend, our pitbull furbaby Lexi, my close friends and family members are my everything. They watch me get sick, come to doctors appointments, and comfort me when I'm having one of those "I JUST DONT WANT TO DO THIS ANYMORE" days. My friends are like my family. Especially my Cysters and Fibros. Those are people that get you, because they're going through it too. The hard part? Getting close to people with the same terminal illness as you. Forming bonds and friendships. Then they get sick. And they don't get better. Sometimes they die. I've had to attend far too many funerals of close friends who's battle was over. And that makes me fight harder. I fight for Megan, I fight for the Coffill twins, I fight for Amanda, Alex, and for Bryan. I fight for all who were not able. I am determined to grow and be alive when they make the announcement that CF stands for Cure Found. I will become a wife, a mother, a grandmother. 

    My name is Nicole, and I have Cystic Fibrosis, but I will NOT let it have me.

    The Fighters Chronicles - Juliann Yungkans

    The Fighters Chronicles -  Juliann Yungkans

    Sixty Five Apparel - Cystic Fibrosis Apparel -  Juliann Yungkans

    MY STORY

    I've been living with Cystic Fibrosis for almost 26 years now. I was diagnosed when I was only 3 months old and have been dealing with the daily struggles CF brings to my life ever since. My younger sister is battling along side me as she also has CF. Along with CF I also have Asthma, chronic sinusitis and CF related Diabetes. My life is far from normal but I like to think more normal than a lot of CF'ers get to have. I have my daily treatment regimes and take pills with every meal as well as insulin through a pump, however I live my life to the fullest that I possibly can. I've had my fair share of struggles with CF from multiple sinus surgeries, countless hospital stays and even spending holidays in the hospital.
    Juliann Yungkans
    However, I strive to do the most with my life like graduate with my Bachelors in just four years, despite the hospital stays and struggles I've had during my time at college. I am currently enrolled in the MBA program at ASU in their Professional program that allows me to work full time and go to school. I never want CF to limit what I'm able to do in life, although my health has always been top priority to me. I wouldn't be where I'm at today without the support and love of all my friends and family who are always there when times are tough! 

    Connect with me here. Facebook

    The Fighters Chronicles - Jodi Cocker

    The Fighters Chronicles - Jodi Cocker

    MY STORY

    Hi, my name is Jodi, I have recently just turned 16. I was diagnosed with Cystic fibrosis at 2 weeks old. After operations resulting in the diagnosis. I have several scars on my body. I have one on my neck from where I had a longtime intravenous line put in while I was under 3-4 operations in the space of 2- 14 days after my birthday. I have another scar across the center of my stomach because the doctors had to open me up to see what was wrong inside as I had a swollen stomach when I was born. I had an ileostomy. I also have a little scar below it which is from a colostomy bag from when I was 2 weeks old. Since then I had no operations until my gastronomy tube in 2011, this was the solution to a rather drastic weight loss. That was due to a sad family experience of my father passing away to cancer when I was 8. 2 years after having the gastronomy tube fitted I had it replaced with a MIC-KEY button, which was a smaller version without a tube but when used a tube was connected and then disconnected when not in use. It was a convenient way to have feeds overnight as I was soon to be going to high school and I felt more comfortable when getting changed for P.E rather than a tube hanging down from my stomach. 5 years later in January 2017, I got my MIC-KEY button taken out as I was no longer needing it. This took months of reducing the overnight feeds from 7 nights a week down to 5 then gradually to 2-3 nights a week. By August 2016 I had fully come off overnight feeds and with check-up clinics every 2 months I managed to maintain my weight at my target of around 8 stone, which was a great weight for my height and age.

    Months had past and it soon got to 6 months without any overnight feeds still being able to maintain my weight. So with help from the home care team I had my stomach peg removed...but the only way I was allowed it removed was it I could swallow tablets, which I was terrible at! As my oral medicines went through my stomach peg so I didn't have to taste the horrible medicines. So eventually I managed to swallow tablets, it made things a whole lot easier! It was an exciting moment for me as I had it for just under 7 years. From my own insecurities about my stomach button I never wore tight tops or 'figure hugging' clothes as it was very visible, my boyfriend kept telling me I shouldn't be ashamed and I should be proud to show my scars and my stomach button off as that's what makes me who I am.

    Every day I take multiple tablets, nebs, inhalers and have physio twice a day. It's a lot for a 15 year old girl to have to do for the first 15 years of her life. Growing up since I was born I have had to take Creon 10,000 capsules which are a pancreatic enzyme supplement which are taken by people whose bodies don't make enough of their own enzymes to digest food. To ensure the Creon are doing their job properly I have to make sure I take them with meals including breakfast, lunch and dinner and snacks. Depending on how much fat content there is in the food I am eating, the amount of Creon I take will vary. The amount can vary on meal size also. On average I take between 30-40 a day. I take them to school with me and all my friends know I have Cystic Fibrosis and they're fine with it, they just let me get on with taking my tablets and inhalers.

     wouldn't say CF has affected my ability to take part in things as much as people may seem to think. When I had my MIC-KEY button yes I was a little dubious about it, scared in case it got knocked or pulled, therefore for the years I had it I didn't play any contact sports. I still did netball and other sports like badminton, volleyball. Although my lungs aren't the best I still took part in sports day and gave it my all. I love sports and even better is it helps my breathing!

    From a young age I wasn't quite sure what 'CF' was or how it affected me. I am so lucky to have such amazing family and friends who take time out of theirs to help care for me. My lungs get very tight from time to time but keeping on top of my inhalers, physio, inebs and medicines is so important to remain fit and healthy.

    Myself, my boyfriend and my mum have recently just participated in a Cystic Fibrosis 10K run which was amazing! God..it tired me out, but I did it! I was so proud of myself, I wanted to show that if you have the right mindset you can do anything you want! Our goal was to complete the run in under 90 minutes and...we smashed it, we did it in 73 minutes! I was proud to say I did it, we raised so much money all together around £500 between the 3 of us on our sponsor forms. It was such an amazing atmosphere and it was great knowing the money we raised is going to help people like myself have a better, easier life and have all the opportunities to get the equipment that they need to stay health!

    I regularly go to my local gym which really helps to open my airways as well as my inhalers, i play for my school netball team. I currently play for U19's league for netball for a club outside of school that I have been apart of for over 3 years now. I have training every week and matches on Sunday's, the pressure helps me to fight my cf even more, knowing that my cardiovascular fitness is limited with cf I know that I have to try twice as hard to get that result i want to achieve in a game. Netball is a sport I really enjoy and it motivates me to want to try my best and not let CF stop me.

    So my advice to anyone out there not knowing what do to to help improve their breathing and making a hobbit out of it, participate in sport! Even if it's only 1 session a week, making friends will also inspire you! But proving you can do it despite any lung problems! CF doesn't stop me from doing everything, it can be annoying at sleepovers having to take everything with me, it can be a handful to carry but I soon get over it and just get on with it. There's always someone worse off than myself is what keeps me going. Don't let anyone including yourself let you hide your scars because it simply shows you're so much stronger than what tried to hurt you! I am a CF fighter and I'm not giving up! Thank you for taking time to read my story.

    Connect with me here. Instagram