Surfing the blogs...

Blog information seems to flow like the waters. This afternoon, PHA's VP for Community Engagement, Mollie Katz, sent a note about a blog that focused on PHA's Research Room at Conference.

Med School Watercooler is a blog from the University of South Alabama's Medical School. Pulmonary Researchers Participate in Pulmonary Hypertension Association's International Conference is a well-told story of how one medical team participated in the Research Room at PHA's International Conference in June and the important work they did.

Reading that first blog got me to exploring...

Next, I found Team Phenomenal Hope's site and their blog about their Conference experience.  These are the great folks from the University of Pittsburgh who unveiled their plans to bike awareness of PH across America in 2014.  Besides their Conference story, Team PHenomenal Hope energized by PHA Conference offers a lot of great pictures.  By the way, I love the theme of their website, Team Phenomenal Hope...It's not just about the bike. It's not even about the race. It's bigger than that...

We look forward to working with Team Phenomenal Hope to make this a national PH awareness event when they Race Across America in two years.

A little bit of searching brought out a lot more discovery.

Sometimes, in our community, blog information flows from the sharing of life experiences.  That can happen with groups like Generation Hope and their blog for young adults living with PH.

It can also happen with individuals, as I found with blogs from Colleen S. and Colleen B.

Colleen S. lays her goal out in the subhead to her Daily Ponderings...the ramblings of a girl with Pulmonary Hypertension...sharing the ups and downs of this disease and anything else I want to share!

So does Colleen B. in her PH and "The New Normal"...finding a path with Pulmonary Hypertension.  Her profile explains why Colleen B. writes:

I am a mom in my early 30s. I was diagnosed with Pulmonary Arterial Hypertension in January of 2008. This life changing disease has forced me to find a new perspective on things, to find a "new normal," and ultimately to decide what that new normal would look like. I don't believe in letting the disease define that for me. Chronicled here is the story of that still on-going journey.
 

Becca A. tells her story through My Life as a Chronically Ill Teen, defining her purpose clearly and powerfully...

This blog is about hope, love, acceptance, and life's ups and downs. Living with a chronic illness isn't easy, but with the written word, maybe we can bring some hope and kindness back into the world.

Sean Wyman's Blog, Sean Wyman--Future D.O...the thoughts and reflections of a graduate student chasing the dream of being a healer shares insights from his experiences, observations and, yes, trials. 

Kim's blog - The Life and Lungs of Kim is self-described as "the chronicle of a woman who was diagnosed 6 years ago with Pulmonary Hypertension..."

And then there's Pam G.'s Blog, Multi-tasking Wife's Life, in which a caregiver celebrates the joy of self-publishing in the blog world.


Blogs are a great way to talk about what you think is important (or just spin the day's events) in a way that you feel comfortable. They are easy to set up, too.  And, help is everywhere.  All you have to do is Google, how to blog.

To learn more about the value of blogging...or diary-keeping...or any other form of self-expression, you may want to watch an interactive workshop in PHA Classroom. Words for Wellbeing. 

It's based on the fact that medical research actually links creative endeavors, such as expressive writing, to reduced symptoms and improved health. You may want to invest 45 minutes to get ideas, prompts and tips regarding writing for your own health, as well as guidelines and considerations when writing for publications like Pathlight.

The session was presented by Sylvia Earley, volunteer copy editor for Pathlight, Megan Mallory, PHA's Publications Director and Jeannette Morrill, author of “Living with Pulmonary Hypertension: 34 Years and Counting…Healing the Mind and Body Through Faith.”

Also very much on target is a PHA webinar, Creativity and Healing through Blogging, featuring Leigh McGowan and Colleen Schnell and hosted by Megan Mallory.
My goal for this blog was to spotlight the fact that many in our community are finding satisfaction and personal value through writing.  It may be something you want to consider.

Expressing yourself can be the pathway to healing.

Oh...and if you know of any other blogs from the PH community, please feel free to post a note and let me know.  Thanks!

A note about Pathlight...and a few more words

This morning, the first e-mail I saw was from John Hess.  John whose son is a patient has been a volunteer on a number of projects and activities over the years and, more recently, has joined the PHA board of trustees. 

He wrote...

Very rarely do I get down to sit down, relax and read. Tonight I had that luxury and did so with the most recent Pathlight.

As I read Pathlight, I'm inspired by the messages of progress and hope contained within it. I see PHA adding new services and programs with dedicated and inspired staff. I see committed caregivers and patients spreading the word about PH. I see healthcare providers suggesting strategies for transitioning PH children from pediatric to adult programs. I see an entire community of people, separated by geography but bound together by a common cause. It's inspiring and an amazing thing to be a part of.

Of course, it's always nice - and often moving - to receive notes like this.  It also helps us to know we are hitting our targets.  

Pathlight was edited by patients and one caregiver for the first 16 years of its existence. This began in May 1990 when Teresa Knazik, one of PHA's founders, launched the first issue (see left).  She served as editor through 1994. For awhile, she co-editied with another patient, Patricia Murphy. Then Pat's husband Mark Taylor Murphy was editor through 1996 when another patient, Jan Travioli, took over. Shirley Craig was the last patient editor, serving from 2000 to 2006.  

There was a one-word reason Pathlight editing moved from a volunteer to a staff role in 2006. Growth. By the time of its transition, Pathlight had grown to a 40 page per quarter publication.

The real challenge for PHA was keeping the community's voice loud and clear.  Christine Dickler became the first staff editor and began her task by extensively surveying and interviewing many patients, caregivers and medical professionals.  She learned that the key issue for patients was that they wanted to hear as much as possible about how others are living with PH.  That has been implemented by including members from throughout our community as subjects of stories and writers.  As a matter of fact, Christine segmented the publication with a Users Guide that appears in every issue.  The backbone around which each of the issues is built includes the following sections: PHenomenal Lives, Health Matters, Advancing the Cause, Community Classroom, PHenomenal Youth, and Family PHocus.  All are written to offer what our readers have told us is important to them. 

When Christine left the editor position (first to go to gradiuate school, then to return to lead our International Services department) Megan Mallory took over as editor.  She maintains the same commitment to getting the story of this community out in ways that bring value to those whose lives are touched by this disease. 

John, thank you for noticing.