Living with and writing about CF.

CF magazine writer, engaged, lover of books and being an original. I strive to spread awareness of Cystic Fibrosis and to share my love of writing with everyone. One day I hope for CF to stand for Cure Found.

[chronicbeauty65]

Hello everyone!! Today I had the first real exercise in several weeks! I rode again! I haven't ridden horses since right before I moved in January! Horseback riding is the best kind of therapy for me both physically and mentally and I had a blast today! While this isn't my horse, I am starting to look for one for myself to help keep me exercised and healthy! Keep fighting everyone! #cf #cysticfibrosis #justbreathe #staystrong #cfwarrior #exercise #goodforyou #horsebackriding #horses #western #greattherapy

[chronicbeauty65]

Hope everyone is having a good day today! I have been up and at it since 11:30 my time today. I helped work outdoors and got my heart pumping and my lungs burning! Allergies are getting to me something fierce though! Gotta keep going! #cf #cysticfibrosis #raredisease #chronicillness #keepfighting #cfwarrior #staystrong #justbreathe

[chronicbeauty65]

For all my #cysters and #Fibros! We all could use a break from time to time to stop and catch our breath. We should look at all we have been blessed with and be grateful we woke up today as many others didn't get that chance. We will make CF stand for #curefound #cf #cysticfibrosis #justbreathe #keepfighting #positive #staystrong #chronicillness #raredisease

[chronicbeauty65]

This is so true for us with CF! So many people ask us this! #cf #cysticfibrosis #sotrue #skinny #cfdiet #weightgain #funny #humor

[chronicbeauty65]

Made a little something for all my CF friends! Thought you guys could need a laugh today! I'm sure we can all relate to this! #cf #cysticfibrosis #funny #sharealaugh #sotrue

[chronicbeauty65]

Today I did as much exercise as I possibly could to help strengthen my lungs and help my CF. While walking the neighborhood, I unfortunately forgot to do my albuterol beforehand to help open my airways before going. Because of this, I had a hard time catching my breath but I pushed on. Later, I did a treatment and it helped me to feel better before I went it again to play soccer with my cousin in the field. Exercise is vital to those with CF and anything we can do to keep it up is important. I am happy with how I did today and I hope to keep it up! I have too much going on right now to let CF get in my way! #cf #cysticfibrosis #raredisease #exercise #strongerlungs #soccer #beautifulday #keepingstrong #justbreathe

[chronicbeauty65]

A fattening meal fit for someone with CF! In order to digest all this delicious goodness of chicken, bacon, cheese and avocado, I needed four enzymes (pictured below my food) so that everything will be used to my benefit and help me gain weight. #chubbychasing at its finest! #cf #cysticfibrosis #enzymes #medicine #food #yummy #chilis #fitforacfer

[chronicbeauty65]

Writing with butterflies

  Pre-project jitters. Excitement about the unknown future. A burning desire to do your best. These little moments are what make starting a new project so exciting and compelling. The open expanse of infinite possibilities awaits. A blank canvas spreads itself before you, just waiting to be discovered!

  Writing has always been something I have enjoyed. It gets me out of the real world and plants me into a time and place all my own. I have full control of what I write and how I do it. It doesn’t have to make sense to anyone other than me. I can be as scatterbrained and confusing as I want during the first draft process. After all, that’s where the true magic happens! You can make something out of nothing and edit it little by little to make it into something great.

  Today marks day one of this new book project. I venture out with a mixture of excitement and a small amount of that overwhelmed feeling. So many things have yet to be done and so few stories have yet landed themselves in my hands to be added. I know that in time, I will have all and probably more than my share of stories and work but the first hurdle has yet to be jumped. I sit here, staring at my computer screen, just hoping I can make a decent book out of this. I want to do justice for Cystic Fibrosis and these incredible people who have given me their stories. I want to portray the strength of those living with CF and I hope I can get my message across to others.

  I have never gone out to make a story based on true information. I have always found writing fantasy about girls becoming warriors and riding on winged horses more my speed. I love horses and that kind of literature comes more natural to me. I suppose CF wouldn't be an exception either, as I have lived with it my whole life as well. But I never really thought I would get so much support for this book to start it. Now that I do, I’m not quite sure how to get it all done.

   I guess my main concern at this moment is that I don't have but a few stories back. I worry that people will forget to write out their stories and never send them in. I hate to bug someone as I know that people often get very busy but I also would like to get this book finished at a decent time. I suppose I will just have to ride this wave the best I can and hope that people haven’t forgotten and send in everything soon. It seems that with some people, they are happy to help but don’t seem as enthusiastic as I hoped and don’t reply with any extra help. But, I’m sure it will all work out in the end.

  As I start on this journey, I hope to get to know more people with CF and grow closer to the CF community as well as spread more awareness for the disease and help to get more donations sent out to help us find a cure! Thank you all for being a part of this and following my progress in making my book! I love you guys!

[chronicbeauty65]

Having Cystic Fibrosis isn't easy but those of us who do have it don't let it stop us! In addition to book updates, I will also be posting glimpses into my daily life of living with CF. Today I wanted to talk about the daily medicines those of us with CF must take to help stay as healthy as we can. My medicine list is minor compared to many others but nonetheless, I wanted to show what I take on a daily/weekly basis. From left to right: Heartburn pill, 1 pill, once a day (for my frequent heartburn and GERD, which stands for gastroesophageal reflux disease), allergy pill, 1 pill, once a day (for my allergies), appetite stimulant, 2 pills twice a day (to help with giving me an appetite), preventative antibiotic, 1 pill, 3 days a week (to keep infections at bay), multivitamin, 1 pill, twice a day (to help keep my vitamin A, D, E and K levels up), anti-depressant, 2 pills, once a day (for my depression caused by my CF), extra vitamin D, 1 pill, two days a week (to give extra vitamin D to help keep my bones strong and prevent osteoporosis), extra vitamin K, 1 pill, two days a week (to give extra vitamin K to help my blood clot better), my enzymes used every time I eat, 4 pills with meals, 2-3 pills with snacks and 5 pills before and after tube feedings (used to digest my food properly so I can absorb it and gain weight.) This is just my oral medications. It doesn't count my inhaled medicines and CPT machine. I'll show all that in another post soon! #cf #cysticfibrosis #cysticfibrosisawareness #raredisease #pills #mydailypills #justbreathe

[chronicbeauty65]

Last but not least, they are coming out with new medicines that act as gene therapy. These medicine, while not a total cure, are helping those with CF to live healthier and happier lives. They are working on making more medicines to target other mutations and improving the medicines they currently have out. It is a big step in helping to find a complete cure and to make CF stand for Cure Found. So in conclusion, those with CF are often very resilient, strong, determined, brave and try to keep going no matter the circumstances. They are more than a diagnosis or a disease. They are more than a patient ID or research prospect. They are human. They do all they can to keep CF from ruling their lives. They don't give up and they help each other. The CF community is very close and feel like family. If you would like to donate money to help find a cure for CF, please go on the @cf_foundation website and follow the instructions to give! It would mean a lot to those of us living with CF! I hope my book will spread more awareness as well and that part of the money I make from selling it can go towards finding a cure as well. Thank you for reading this very brief introduction to Cystic Fibrosis and don't hesitate to message me if you have a question regarding CF! Also follow me on my other social media accounts to follow along with my book writing process and get involved with the CF community! #cf #cysticfibrosis #cysticfibrosisawareness #raredisease #facts #donate #findacure

[chronicbeauty65]

Those with CF are encouraged to get as much exercise as they can. From walking, to jogging, even to weight lifting. It helps keep the lungs strong and build up muscle and stamina. A heart and lungs that aren't worked regularly make it harder to do many tasks. The average life expectancy for those with CF is about 40 years with many people living past that. In the first few years of being discovered, life expectancy only lasted 6 months to a year. Thank goodness for modern medicine and more knowledge of CF! CF is known as a very isolating disease in itself. Those with CF are discouraged from meeting and if in the same room, must stay at least 6ft apart from each other. This prevents the possibility of cross contamination between CF people. Before it was proven that being together made people worse, CF patients shared the same medical equipment and participated in summer camps and other events. It began to cause severe infections and was eventually stopped. Health care providers are expected to wear gowns and gloves with each patient now. Those living with CF also have poor immune systems and have to be extremely careful during the sick parts of the year. Masks and frequent hand washing go hand in hand with CF. People who insist on going to work or sending their children to school sick pose a great risk to those with CF. Even when riding on airplanes, it is essential that someone with CF wear a mask to filter the air and protect themselves. Having CF means you can get sick easier and stay sick longer. A simple cold for someone without CF can become pneumonia for those with CF and require a hospital stay. Having CF may not make working impossible but it can impair the amount and type of work. Jobs involving lots of person to person interaction and strenuous exercise isn't a very good idea. There are many who can work and enjoy it. Just keeping in mind how to prevent yourself from getting sick or overdoing it is the key. #raredisease #cysticfibrosisawareness #cysticfibrosis #cf #facts

[chronicbeauty65]

And so it begins.

  Hey guys! I have just now found the time to write out what exactly I’m going to be working on and why I am so determined to get my message out there. This could quite possibly be the most important and life-changing project I’ve ever done. I had always envisioned doing something of this nature but never had the get-up-and-go to do it until a few weeks ago. All with the help of many friends willing to take part!

  I am beginning to write a book about Cystic Fibrosis. But it’s not exactly about the disease itself. It’s about the people living with the disease. Those who go day in and day out fighting for their very existence. The ones who get frowned upon and talked about for having a “nasty” cough in public or parking in a handicap spot when they “clearly aren’t sick and should be ashamed of themselves.” CF only seems to get the wrong kind of attention and not enough real knowledge to help others better understand it and those who have it.

  I wanted to change this. I wanted to write a book that showcases not only the true lives of those living with CF, but also show the determination and strength it takes to live with such a hard chronic illness. I wanted to shine a light on those who shine from within with the hope that tomorrow will be a better day and who never give up even when they feel they can’t go on. We are more than our diagnosis, more than our disease. We are more than statistics or patient ID numbers or research prospects. We are human and we feel just like everyone else. We hurt, we cry, we get scared. But we don’t let that stop us. This is what I want most to portray in my book.

  I have titled my book as Living Chronically Beautiful: Inspirational stories from those living with Cystic Fibrosis. In it, I will have real stories from those living with CF, including my own. I will have the general information about CF as well as a glossary for any words that may cause confusion and to help aid with understanding many of the medical terms we are used to hearing.

  While I am anxious to get as much done as possible, I have many people involved in giving me stories and the questionnaires I have sent out to them. This means that I get stories sent in at different times and thus, the book itself will take a while to be completed. But nevertheless, it will be done and hopefully will see itself published and in the hands of many people so that awareness for CF will be spread, along with more knowledge and hopefully, more donations to the Cystic Fibrosis Foundation to help find a cure.

  I hope that in doing this, I can make a difference in the CF community and bring us all closer while reaching out to others who don't know about this disease. I am so thankful to all those who have been willing to be a part of this amazing project and I can’t wait to see what the future holds for it!

[chronicbeauty65]

Sometimes inhaled antibiotics, such as Tobramycin, Cayston or Coliston may be used to treat an infection within the lungs. Along with doing inhaled medicines and CPT, many oral medicines and antibiotics are used. Some of the most common of these are: extra vitamin supplement(s) consisting of vitamins A, D, E and K, heartburn pills for acid reflux and the onset of GERD, appetite stimulates, preventive antibiotics to keep infections at bay, anti-depressants for depression due to having a chronic illness, extra iron, extra calcium to promote stronger bones and lessen the chance of developing osteoporosis which is also common with the disease, enzymes to aid digestion, supplemental feeds if needed and stool softeners as those with CF often experience constipation. There are many more medicines that could be taken depending on the severity and/or special conditions of each individual with CF. Because CF is a progressive disease, the vital organs can begin to fail over time. This leads to liver and kidney problems as well as the need for supplemental oxygen in some whose lungs begin to deteriorate and can no longer provide adequate oxygen to the body. Oftentimes, double lung transplants and other organ transplants such as a pancreatic, liver or kidney transplant may be needed. Those with transplants must take immunosuppressants to keep their bodies from rejecting the transplanted organs. The use of immunosuppressants can also cause cancer among those taking them as it decreases the body's ability to make antibodies to fight off infections. Those with CF are frequently going to doctor visits, being hospitalized, having blood work and X-rays and special tests done called PFTs (Pulmonary Function Tests) that measure the lungs' total capacity by how much air can be taken in and expelled forcefully out within one second. These tests help determine if and when antibiotics and/or hospitalizations are needed. The lower the function, the harder it is to breathe and the more supplemental oxygen may be needed. #cf #cysticfibrosis #cysticfibrosisawareness #facts #raredisease

[chronicbeauty65]

Because of the increase in salt in those with CF, a sweat test can be done to diagnose Cystic Fibrosis. This test is done by wrapping a section of arm in hot clothes and plastic to encourage sweat to form which can then be tested for the increased sodium in the sweat. As well as the most common mutation of CF, which is Double Delta F508, there are over 1,000 other different mutations of the disease; some considered milder than Double Delta F508. People with CF can experience a hard time gaining weight from malabsorption of fats and need to eat a special CF only type diet of high fat, high calorie foods as well as adding extra salt into their food. Junk food and fast food are oftentimes encouraged for weight gain because of the high amounts of calories and fats. Many people with CF appear shorter and thinner in size due to the malabsorption problems from birth. In some cases, despite the high caloric and fat intake, a person with CF simply is not able to gain or maintain weight easily. When this is the case, a feeding tube, normally in the form of a G-tube or even PEG tube may be needed to help give supplemental feedings in addition to their usual diet. Pancreatic enzyme replacements, most commonly called Creon or Zenpep, must be taken before every meal or snack to ensure proper digestion, weight gain and avoid causing loose stools from being unable to digest food properly. Many people with CF develop clubbing of the fingers and/or toes due to decreased amounts of oxygen within the tissues. Along with a chronic cough, frequent chest and sinus infections, and shortness of breath, it is one of the most common symptoms of CF. Those with CF must do daily medical regimens consisting of inhaled medicines responsible for opening the airways (Albuterol), thinning the secretions (Hypertonic saline) and even changing the DNA of secretions to make it thinner and easier to get out (Pulmozyne). They also must do chest physiotherapy or CPT in addition to these inhaled medicines to further encourage the thick secretions out of the lungs. #cf #cysticfibrosis #cysticfibrosisawareness #facts #raredisease

[chronicbeauty65]

Cystic Fibrosis is a rare inherited lung disease affecting 30,000 people in the US. CF has no cure and gradually progresses as the person gets older. It affects the lungs, pancreas, liver, kidneys and digestive system. CF is caused by a mutation with the CFTR protein from both the mother and father if they both are carriers of the disease. There is a 1 in 4 chance of a child having Cystic Fibrosis if both parents are carriers. CF is diagnosed in both men and women equally and is commonly diagnosed using a sweat test or genetic testing. Many newborns are diagnosed when they experience meconium ileus, or a blockage of the intestines due to not being able to excrete the meconium (feces) when born. This condition requires immediate emergency surgery. Cystic Fibrosis causes the normally thin secretions within the lungs and pancreas to become thick and sticky; much like the consistency of glue. Because of this, it blocks the ducts within the pancreas and decreases its function. It doesn’t allow the pancreas to release what’s known as enzymes that aid in digesting foods and fat-soluble vitamins such as A, D, E and K. Those with CF have to take pancreatic enzyme supplements with each meal to replace their poor functioning pancreas. They also take extra vitamin supplements for those vitamins that are not properly absorbed which are A, D, E and K. The thick mucus also causes the lungs to become scarred and causes frequent and oftentimes severe lung infections. Being unable to cough out the infections, the lungs scar over and become inflamed, further prohibiting the ability to rid the lungs of infection. This also can occur within the sinuses causing what is called sinus polyps, which are build up of sinus tissue due to chronic infections within the sinuses. Some people with CF also get what is called CFRD or Cystic Fibrosis Related Diabetes. This again comes back to the poor functioning pancreas being unable to properly release the correct amount of insulin with meals. Those with CF have very salty skin as the sweat glands allow too much salt to pass through onto the skin, thus depleting the body of salt quicker. #cf #cysticfibrosis #cysticfibrosisawareness #facts #raredisease

[chronicbeauty65]

Hello everyone! I would like to introduce myself to you! My name is Brooke Putnam and I have Cystic Fibrosis. CF is a rare, inherited lung disease that affects 30,000 people in the United States. It not only affects the lungs but also the pancreas and digestive system. I have to do many medicines and specialized treatments to keep myself as healthy as possible and try to slow the progression of CF. There is no cure for Cystic Fibrosis but they are working hard to change this! Donations made to Cystic Fibrosis Foundation help tremendously and get us one step closer to having CF stand for Cure Found! Besides living with a chronic illness, I enjoy spending time with family and friends, exercising, riding horses, music, reading books and writing. I am currently in the process of writing a book of stories of others with CF, hoping to shed some light on our daily lives and spread more awareness for CF. My book is called: Living Chronically Beautiful: Inspirational stories from those living with Cystic Fibrosis. I have started this Instagram, Twitter, Facebook page, Tumblr and YouTube channel to get the word out and allow everyone to follow in this journey of a writer set to publish this book to help others become more understanding of those of us with CF. I hope you will follow me along in this journey and help CF to finally find a cure! #cf #cysticfibrosis #cysticfibrosisawareness #writer #author #writingabook #journey #makecfstandforcurefound #followme