An Information Web Site Run By and For Pulmonary Patients
“It’s not all about being sick. It’s about living.”—Breathing Better, Living Well motto
Jane M. Martin, BA, CRT is a respiratory therapist who is making great strides for pulmonary patients with her web site titled “Breathing Better, Living Well” (or BBLW, as Martin and frequent viewers like to call it).
Martin started the site in 2001 as an extension of her two books: Inspirations: Stories of Breathing Better and Living Well; and second edition Breathe Better, Live in Wellness: Winning Your Battle Over Shortness of Breath. Martin writes much of the content for the site, but says that without a special group of volunteer pulmonary patients, BBLW would not be what it is today.
Martin is referring to a featured community forum, which she calls the “lifeblood” of the site. The site is filled with information and tips on coping with pulmonary disease, but the forum is where the personal accounts are shared.
“I wanted to give people a reason to keep on returning to the site,” Martin says. “As good as sites are – they have great information on them – I wanted it to have it have some life.”
To aid in that effort, the forum is run and maintained by a group of eight volunteers who share current information and links to articles and other information, as well as their stories and encourage those who visit to do so. Martin says they try to keep the tone light and casual, to make people feel welcome and comfortable with sharing. For example, one group in the forum is titled “Village Gym”. This is where patients can discuss exercise tips and techniques that have worked for them. Another is called “Happy Hour at the Oxygen Bar,” which facilitates topics completely unrelated to pulmonary disease – so patients can go and talk about something other than what ails them.
The forum also showcases “guest appearances” by healthcare professionals, highlights birthdays among the COPD community, and general question and answer topics.
“It’s a place for pulmonary patients and family members to go where they feel accepted,” she says. “We’ve had people say ‘I feel safe here’, and I think by that they mean they are free of being judged and being questioned. Everybody there understands.”
The forum is not a place for dispensing medical advice – instead, viewers can read other peoples’ accounts, as well as information they’ve found helpful, and bring ideas and questions to their doctors about things that may work for them.
One of the mottos of BBLW is, “People are so much more than their disease.” Martin’s hope is that the site shows pulmonary patients that they can see past what ails them and that there is hope.
She also wants them to know there is a safe place for them to go where they don’t have to fear judgment. “Several people say that this is the only place I can come and feel accepted and everyone is going to understand me,” she says.
The community forum is open 24 hours a day, every day. According to Martin, patients from all over the world participate in reading and sharing.
BBLW also has an online book store and photo gallery, as well as links to related web sites, a list of blogs, and a section that lets viewers “Meet the Team” that helps keep BBLW up and running.
Martin is originally from Chicago and now lives in West Michigan.
For more information, check out her web site BreathingBetterLivingWell.com.
Martin’s book: Breathe Better, Live in Wellness: Winning Your Battle Over Shortness of Breath
