In order to reach more people with pulmonary education and support, I ventured on to the World-Wide Web in late 2000 by securing our first domain name, COPDSupport.com. In 2001, I launched this website and called it Breathing Better Living Well. Now, where to begin? Well, in response to the question so often asked of me as a floor therapist, “Am I the only one who has this?” — I began by assuring readers that they are not alone. The primary goal of the site was, and still is, to assure people with COPD and all chronic lung diseases that they are not alone, and secondly, that they do not have to be controlled by their disease but can take charge of their lives in a positive way – through effective education and support. “Seven Steps” gently guides readers who have just been diagnosed.
BBLW website was originally developed to provide continuing recognition, validation, and information about the emotional issues encountered in life with chronic lung disease, but I soon found out that people had more basic questions. “What is COPD? How long will I live after diagnosis? Is it safe to exercise? Do I need oxygen?” That’s why we have “The Basics.”
Stories have the power to inform and inspire; and I wanted to provide a place where pulmonary patients could share their stories and experiences in order to support one another and enrich their own lives and the lives of others. “Stories” are an important part of BBLW.
My work on the web started out small – just me and a five-page template – with material I had written. The pages were: First Steps; The Basics; Stories, Articles and Newsletters; Links, and About the Author. I launched a forum, our “Community,” in the fall of 2003. We were virtually unknown until December 9, 2004 when BreathingBetterLivingWell.com was honored as the Good Housekeeping Site of the Day as part of the “Bits and Pieces” series. After a lot of hard work we have grown steadily, eventually with the assistance of a small, but dedicated volunteer moderating team.
Breathing Better Living Well is the only pulmonary website we know of that was started and run by a Respiratory Therapist and author of a pulmonary book, combined with an on-line bookstore, community forum and picture gallery. I am proud to say that our site has been visited by people from over 50 different countries on six continents.
The most rewarding aspect of working with Breathing Better, Living Well is the wonderful group of people who gather here to find – and share – pulmonary education and support in a positive and uplifting environment. We take great pride in honoring our visitors wherever they are on their journey in life with chronic lung disease. While we are all in this together we recognize and embrace the fact that each of us is unique and in his or her own place on this pathway. In this community we accept one another’s differences and distinct circumstances, striving never to judge but to understand.
The feasibility of becoming a not-for-profit [501(C)3] has been explored, but at present the time, work, and the cost involved in doing so is prohibitive.
The monthly cost of maintaining the Breathing Better Living Well website is significant, and includes fees for web hosting, maintaining the subscriber service and the community bulletin board, and paying our webmaster.
Non-tax-deductible donations are welcome for the ongoing support of BreathingBetterLivingWell.com. Be assured that 100% of donations go to maintaining these projects in order to help people with pulmonary disease.
We’re often asked, “How can I help?”
With a degree in elementary education, a year of teaching experience, and a desire to make a difference, Jane Martin came to Holland, Michigan in the summer of 1980. A young newlywed and knowing nobody in town but her new husband, she was undaunted – and ready to teach! But she never anticipated declining school enrollments in a town where it helped to know somebody who did the hiring, and she realized simply, that she needed a job – any job.
On impulse and, perhaps, out of desperation, she applied at the local hospital and got a job as an entry-level OJT (on-the-job trainee) in the Cardiopulmonary Department. Jane cautioned her new boss to not invest much time in training her. She’d be gone, she said, in three months when a teaching job opened up.
But she stayed. She continued to work in Respiratory Care at the hospital on any available shift including half the weekends and holidays, becoming more and more adept at the science of respiratory care. She learned to do blood gases, run ventilators, and stabilize trauma patients. She did countless EKG’s, oxygen rounds, and nebulizer treatments. After a few years Jane became a respiratory therapist and passed her national boards. She had a baby, then another. Something had happened on the way to her dream of teaching. Jane had fallen in love not only with the art of Respiratory Care, but with the spirit of its patients.
Now all too aware of the huge numbers of people with chronic lung disease, she was disheartened when time after time patients in her care asked questions such as, "Am I the only one who has this problem? Where can I learn more about my breathing? What's going to happen to me? How can anybody possibly understand how I feel?"
Frustrated with the "revolving door" of providing emergency and urgent care to lung patients, helping them breathe better, only to see them return to the hospital just days later with the same problem, Jane developed educational programs targeting prevention and improved pulmonary management at home. After working late one summer night to unsuccessfully revive a 9-year-old boy who died of an asthma attack while on vacation, she organized asthma education days for the community and developed educational materials for use with young home care patients with severe asthma.
Jane continued to develop more programs, among them a Better Breathers' Support group and later Pulmonary Rehabilitation. In doing this work, she got to know her patients well and became inspired by their courage, wisdom, humor and ability to just forge ahead day after day. She knew then that a connection had to be made; a connection from those people who were lonely, angry, and confused to those who had learned to live well and thrive in spite of the emotional and physical obstacles presented by chronic lung disease.
In an effort to bring patients together to help each other, she began to interview people and gather stories to put into a book. While providing respiratory care on the floor on the evening shift, working in pulmonary rehabilitation during the day, and raising two young children, Jane worked on her book for three and a half years, listening to lung patients and writing down their stories.
Finally, in May of 2001 the first edition of a new kind of book for pulmonary patients, Inspirations: Stories of Breathing Better and Living Well, was born. Encouraged by people who wanted more information and more stories, Jane went on to write the second edition, Breathe Better, Live in Wellness: Winning Your Battle Over Shortness of Breath. Her most recent book, Live Your Life with COPD: 52 Weeks of Health, Happiness, and Hope, was published in March 2011.
Jane is the Director of Breathing Better Living Well.com and writes bi-weekly articles for HealthCentral.com. Originally from the Chicago area, Jane obtained a bachelor's degree in Education and Language Arts from Hope College in Holland, Michigan. She studied in the respiratory therapist programs of California College for Health Sciences in San Diego, California while working full time in Cardiopulmonary. She is a member of the Michigan Society for Respiratory Care, the American Association for Respiratory Care, and serves on the editorial boards of The COPD Digest and Alpha-1 to One.
You can contact Jane either by sending an email to the email address listed above or by filling out the contact form below:
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