Help Shape the Mental Health Conversation at Medicine X

Mental health too seldom is discussed. There remains a stigma associated with with conditions that impact the brain. Why? The brain has no better protection from illness than the heart or the lungs or the skin, yet we hold it to an entirely different standard. This antiquated philosophy must change—and only will change when we bring conversations about mental health to the forefront.

I am an advisor to Medicine X, a healthcare and emerging technology conference held at Stanford University each September. During and after Medicine X 2013, attendees and those engaging in the conference via the livestream and Twitter feed called for greater inclusion of mental health issues—and we listened. At Medicine X 2014, mental health and psychology weave their way in and out of various presentations. Daniel Siegel, MD will give a keynote speech and lead a 90-minute Master Class on "Compassion, Connection and Engagement: How Health Arises from our Mind, Body, and Relationships." Dustin DiTommaso of MadPow will take a look at the psychology of motivation and how to close the gap between people's intentions and their actions. Allison Darcy presents her work to develop and pilot a smartphone app for patients with eating disorders. Four CEO's will talk about building companies to bring emerging technology to mental health; and psychologist Dr. Ann Becker-Schutte leads a panel discussion about mental health as a turning point for whole person health.

It would be remiss of me to talk about bringing mental health into the light without being open about my own. As a freshman in college, I was diagnosed with depression and anxiety. Changes in environment and my support network brought the diagnosis about—I am an only child, and frankly, I always got along better with adults than I did my peers. I went to a relatively large university where 200 to 300 students filled giant lecture halls for introductory classes. My professors didn't know I existed. I became withdrawn and my grades suffered (taking 17 hours of classes didn't help). I did best in the two classes I had registered for without my advisor's approval—junior/senior level classics and political science courses in which I was one of 20 students. I made it through the school year, went home for the summer, and took stock of my situation. I made changes, and I made it out of there three years later. 

My depression and anxiety didn't resolve with graduation. My first job as a reporter meant always being on call, covering murders and deadly accidents, never knowing a holiday, and hardly seeing my parents. Perhaps I should have taken it as a sign that the newspaper had a group discount rate with a local counselor. At my first appointment, I spent the full hour talking to her but looking at her two dogs whose soft, soothing ears and warm brown eyes invited me to be honest with myself. 

My second counselor came into my life after I had triple bypass surgery that resolved a host of problems but created a new relationship with my body that I did not know how to negotiate. My third counselor and I stuck together for years, and he created an environment in which I was safe enough to explore my teenage traumas and tackle issues that prevented me from being as emotionally present as I wanted to be for my husband. 

I could not and would not have successfully navigated the past 15 years to get where I am now without help from mental health professionals. Their training in turn trained me how to help myself. Like any expert, they had knowledge that I did not. If I had wanted to rebuild an engine, I would have gone to learn from a mechanic. If I had wanted to learn how to fly, I would have gone to learn from a pilot. If I had wanted to learn how to paint, I would have gone to learn from an art instructor. I wanted to learn how to best care for my mental, emotional, and physical self, so I went to learn from a counselor. 

And there's not a single day that I regret doing so. 

Does my diagnosis mean that there's a mark in my medical file? Yes. Does that mean that I'll never be hired to become part of the CIA's spy network? Yes. Are those things more important than the fact that I am happier and healthier than I ever would have been without addressing my mental health needs? No. Is it fair that some people will and do judge me for taking this action to advocate for myself? No. Do I particularly care that they do? No because it is clear that they missed the anatomy lesson explaining that the brain is an organ—an extremely complex organ, the mysteries of which we are so very far from understanding. 

At Medicine X, I will be moderating a panel: "Depression in Chronic Illness and Coping Through Online Communities." In order to open the conversation to as many who wish to participate and address questions may not find answers elsewhere, I am asking you—yes YOU—to pose your questions to the panel. 

All questions submitted as a comment to this post between Sunday, Aug. 24 and Wednesday, Sept. 3 will be considered. Panelists will choose one question from those submitted to answer from the Medicine X main stage. Anyone interested in the conversation may tune in to Medicine X's through the Global Access Program, which will feature this main stage panel discussion from 5:25 to 6:10 p.m. Pacific Time on Saturday, Sept. 6. Real time commentary will be happening on Twitter via #MedX. 

After the conference, panelists will have the option to respond to additional questions in writing through a series of blog posts. 

Help us shape this important discussion about depression, chronic illness, and online resources. What do you want to know? Leave a comment to submit your question, and if you're on Twitter, connect with panelists at: @AfternoonNapper, @bacigalupe, @DrBeckerShutte, @ekeeleymoore, @Hugo_OC, @Strangely_TI. 

#HCSM Review - Feb. 13, 2014, #RareDisease Edition

The Feb. 13, 2014 edition focuses on Rare Disease Day, an annual, awareness-raising event marked around the world that aims to educate the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day will be held on Feb. 28.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. There are approximately 7,000 rare diseases. The lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis and difficulties accessing appropriate care.

___________

Living in the Light — from Levi Gershkowitz

"These narratives are shared by individuals facing the challenges of life affected by rare genetic disease. They are aimed to promote an increase in public awareness about the prevalence of rare diseases, as well as an increase in patient advocacy."

MODDERN Cures: Who, What, and Why? — from Amy O'Connor

"More than 30 million Americans live with a rare disease, many of which have few or no treatment options. But there’s hope on the horizon. Public policies like the MODDERN Cures Act could incentivize the development of treatments and cures for unmet medical needs - such as autoimmune diseases, neurological conditions, cancer, and rare diseases."

#RarePOV Conversation Generates Strong Enthusiasm for RDD — from Stephanie Fischer

"Recap of last week’s #RarePOV tweetchat during which leading rare disease advocacy organizations and individual patient advocates came together to share resources and plans for the upcoming international Rare Disease Day. More than 100 individuals and organizations participated, generating more than 680 tweets in the hour-long conversation."

One in Billions: Rare Disease Day 2014 — from Emily Bradley

"One rheumatologist explained to me that treatment options for many rare disease patients sit, waiting, behind an “unbreakable glass wall.” Patients suffer for years—many die—because they cannot afford the few treatments available. With just enough income to keep me at the poverty line, I was unable to receive full funding assistance. I fought for that medication the way I fought to get out of bed. I fought to find resources, help, anything, anyone, while I also fought to brush my teeth every morning. I found myself constantly internally screaming, why does no one fight for me or with me?"

Rare Diseases 2.0 - A Business-Oriented Blueprint for the "RARE" Universe — from Yoni Maisel
"Collectively we have gained the attention of those who can influence and impact our futures. Opportunities exist like never before. But with almost 7,000 Rare Diseases, there will not be opportunity for all."

Para...what? — from lovehopeandcourage
"In March our eldest daughter Tayla, who was just 12 at the time, was diagnosed with a rare neuroendocrine tumour called a Paraganglioma, a Para what I hear you say…exactly! This is something we were never, ever expecting or would have ever dreamed of going through, again."

Treating illness and preventing disease with genetic testing — from The Conversation
"Genome sequencing has the potential to improve the diagnosis of conditions caused by changes in the DNA and indicate what treatments may be most effective. Importantly, it may also red-flag treatments likely to cause adverse reactions."

Dr. Groft of NIH on New Hope for Rare Disease Research and Treatments — from PhRMA

"While there has been amazing progress, the road ahead is still at times daunting as we strive to find better, quicker and less expensive methods to translate research discoveries into new interventions that meet safety and efficacy requirements. The encouraging news is that the rare diseases community appears stronger than ever, and there has been no better time in history to build on existing momentum and resources."

What are the biggest challenges for the rare disease community in 2014? — from pharmaphorum

"Patients can't benefit from new treatments and other medical advances if they can't get an accurate diagnosis. And diagnosis clearly remains an issue for the rare disease community."

Two Children, One Rare Disease and Their Mother Who is Making a Difference — from Parade
"Jana Monaco misses memories of what might have been. Her son’s first day of kindergarten. His Little League games. Prom pictures. The life experiences we all take for granted ended abruptly for Stephen Monaco almost 13 years ago when a rare disease, isovaleric acidemia (IVA), left him permanently disabled, both physically and intellectually, at the age of 3."

Advocates Fight for Justina Pelletier, Teen Held by State in Psych Ward — from ABC News
"Justina was diagnosed with somatoform pain disorder, a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found, according to her family. The case highlights a growing concern among those with rare diseases and autoimmune disorders that physical symptoms that cannot be explained will be dismissed by doctors as psychosomatic."

Look to Mary Pat Whaley at Manage My Practice for the next #HCSM Review on March 5, 2014. 

#HCSM Review - Call for Submissions, Feb. 13 Edition, #RareDisease

The Afternoon Nap Society will once again be hosting HealthCare SocialMedia Review, the blog carnival for those interested in health care social media.

The Feb. 13, 2014 edition will focus on Rare Disease Day, an annual, awareness-raising event marked around the world that aims to educate the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day will be held on Feb. 28.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. There are approximately 7,000 rare diseases. The lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis and difficulties accessing appropriate care. 

Bloggers around the world are encourage to submit their blog posts for consideration. Posts should focus on some aspect of rare disease such as a patient's experience; a provider's difficulty making a diagnosis; pharma's burgeoning rare disease drug market; social media's role in connecting patient communities; or access to research funding.

Want to participate in recognizing Rare Disease Day in another way? Join in the Raise and Join Hands Movement. 

And if you read nothing else about rare disease, read Lisa M. Jarvis' "Orphans Find A Home" from Chemical & Engineering News. 

To submit a blog post to the Feb. 13 Edition of #HCSM Review, email theafternoonnapper (at) gmail (dot) com with the following information:

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent Link To Post:
Name, Username, Nickname, or Pseudonym:
Description or brief excerpt:

Deadline for submission is WEDNESDAY, FEB. 12 at NOON (Eastern Time). 

Dr. Mike Sevilla Has Left The Virtual Building

Hearing of Dr. Mike Sevilla's decision to leave the realm of healthcare and social media was like stumbling across the obituary notice of a mentor's passing.

Sevilla was one of the first physicians I met online to take notice of my own work, and he joined Dr. Michael Ulrich of Mayo Clinic to be the first physicians to participate in a live Facebook dialogue with the patient-run, peer-to-peer support group for those affected by fibromuscular dysplasia, FMD Chat, on Nov. 12, 2011.

But by 2011, healthcare social media was an old hat for Sevilla. In 2006, he was one of the first physicians to engage in social media, blogging as Dr. Anonymous at a time when most of us were still experimenting with ICQ messaging, Napster, and MySpace. Colleagues appreciated his voice as he blogged about what interested him and what he felt was important, and thus he garnered a following and a community. Affectionally referred to as "Blog-A-Holics Anonymous," the community supported one another.

"All of us would write a blog post, and we would post it up somewhere on a friends blog, and we would all go there and gather and leave comments and get to know each other," Sevilla said in his farewell address. "That was the old days back then."

He and his fellow pioneers of healthcare and social media operated without a guidebook. They found their own way and sometimes made mistakes, but the goal was to have a dialogue and to learn from one another. Now, Sevilla said, the community has become polarized, pointing fingers to say what "should" be done, which has lead to his growing sense of frustration.

"Where is the community out there? It's like 'you're on my team or you're not, you're with me or against me'," Sevilla said.

Indeed, as social media gained traction in the general population and within healthcare, the market became more crowded as users flocked to platforms such as Yahoo groups, Facebook, Blogger, and Twitter.

"The best and worst thing happened in healthcare and social media—more people started using it," he said.

As the voices grew more numerous, the vitriol grew more prolific.

"One of the things that I've observed in the recent past, especially out there on Twitter—I know it's been happening, you know, forever—I've seen out there more that people are just yelling," Sevilla said.

Sevilla hits on a cultural shift that has far greater implications than simply within social media. Media consumers overall have been fed and themselves fed the rise of the talking heads as civil discourse has been traded for histrionics and insults. Though I blame the advent of shock jocks and tabloid talk shows for pushing the boundaries of free speech toward our decline in civility—Howard Stern and Jerry Springer, anyone?—the increase in channels of dialogue and speed with which information is disseminated certainly made it easier to reach out and be a jerk to somebody. Communally we asserted our right to freedom of expression at the cost of the Golden Rule—do unto others as one would have them do unto you.

Thus, it should not be no surprise that I learned of Sevilla's decision to leave social media behind on Twitter from three physicians I follow who were discussing Sevilla's announcement, made via his podcast two days prior. Two of the physicians—a gastroenterologist from Texas and a family medicine resident from Washington—lamented Sevilla's departure while acknowledging his reasons for doing so, though the third, an ear, nose and throat doctor from Oregon, took issue with Sevilla's having made his decision so public. However, a public announcement is only fitting for someone who made so much of his life public and thus was left feeling overly vulnerable.

"Being this exposed and this transparent—people know who are out there—it really kind of wears you out," Sevilla said.

Sevilla is right. The public eye exists for scrutiny. We've love a good scandal and will make much ado about nothing if necessary. Even those with nothing to hide grow weary of continually making sure they've nothing to hide, or the emotional turmoil of laying oneself out on the line simply becomes no longer worth the reward. As Sevilla unplugs and walks away, so too does another social media public figure, Secret Agent L, whose notoriety exploded after a local news interview gave way to a 2010 CNN feature that exponentially increased the Secret Agent's followers and missions of kindness but ultimately tapped out a giving heart. Similarly, The Bloggess wrote a book that catapulted her to the top of the New York Times' best seller list and yet she still struggles with depression and anxiety and chooses to live in rural Texas. Then there's Allie Brosh whose blogging rose to fame in stride with her depression, and well, the list goes on. Meanwhile, I'm trying to balance being AfternoonNapper with being a rare disease community leader with being a magazine editor with being just plain old regular me, and plain old regular me has to be occasionally chewed out by her best friend and her husband to "put. the. smartphone. down." and pay attention to the flesh-and-blood human beings directly in front of her, or hell, just go out and garden rather than read another damn status update.

So when Sevilla said, "I've always told myself that if it stopped being fun, that then I would stop, and it's been harder and harder to find fun in social media for a while, and it's really felt like it's been a job," I understood exactly what he meant. To distinguish oneself requires hours of hard work and continual effort—building skill sets, networking, keeping up with current trends, and juggling personalities (one's own and those in one's communities). And as our social media capacity builds, the burden on the social media generators increases.

"To be considered cutting edge these days you have to do things like have a book deal, or do a TED talk, or have a smartphone app," Sevilla said. "I don't have any of those. I don't have a desire to have any of those, and I don't have the time, the mental strength, or the will to do any of those."

Admittedly, I want the book deal, but I wanted that long before I ever started being social about my media. The rest? Well, to achieve it would take a lot of work, and frankly, my own time to step out of the social media spotlight may come long before there's an app or a $10,000 TED ticket with my name on it. However, I continue to be willing to give myself to this job I appointed myself to do because I continue to believe that it's important. Sevilla said that when he began using social media he gained a following because he was a novelty—a physician using social media—but that that space has become a crowded one. Again, he's right; however, just because there are more physicians using social media doesn't mean that there are better physicians using social media or that all physicians are using social media. My own physicians are not using social media. I'm dragging them along kicking and screaming, showing my GP how my smartphone allows me to input and graph my blood pressure readings, and giving my rheumatologist my log in information for 23andme so he can click through my personal genome results. And still I caution every well-educated, urban techie who flippantly touts smartphone and high-tech solutions to healthcare problems that access is still a very real issue in the rural market, compounded by health literacy limitations that know no geographic or socioeconomic bounds.

From my patient-perspective, Sevilla leaving healthcare social media behind doesn't clear space for new users, it creates a void in our leadership. Too many physicians buck the social media trend while complaining about what patients are consuming online—Sevilla created content, the ultimate panacea for an ill-informed consumer. It is my hope that each and every social media user evaluate his or her own voice's volume and tone, then focus on the goal of fostering a dialogue that grows the next generation of social media users to be better than we are, to be more civil, to be more informed, to be more giving, and, above all else, to keep being social from becoming more important than human beings.

#HCSM Review—Health Affairs & Rare Disease Edition

This Feb. 13, 2013 edition focuses on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient.

Health Affairs is the New Shirtless Dancing Guy

Nick Dawson

Dawson attended the HA briefing in advance of the journal's February edition dedicated to all things ePatient. He calls attention to the fact that no "actual patients" were on the panel, while appreciating what HA has done with the issue. Listen in to audio from the HA briefing.

‘Patient Activation’: Real Paradigm Shift or Updated Jargon?
Jacob Molyneux

A nice summary of key issues from the HA briefing, which Molyneux, American Journal of Nursing senior editor, attended in D.C. Molyneux is spot on as he writes, "It’s unlikely we’d be talking so much about patient engagement if we weren’t facing, perhaps as never before, the need to do something about the glaring gap between costs and quality in the U.S. health care system."

American Institutes of Research

AIR authors contributed two articles to the HA edition. The first article compares data available with what patients are seeking. The second suggests a framework for increase patient engagement. The link in turn links to reprints of both articles in full.

Family Races Against the Clock for Treatment for Giant Axonal Neuropathy

Eileen O'Brien
Lori and Matt Sames are fighting for the life of their daughter, Hannah, who has the ultra rare disease, Giant Axonal Neuropathy (GAN). When Hannah was diagnosed in 2008 there was no GAN patient organization, so the family started Hannah’s Hope Fund and are about to start a gene therapy clinical trial.

A New Start - One Conference at a Time

Sean Ekins

App developer Ekins discusses his inspiration for Open Drug Discovery Teams (ODDT), which applies the concept of open sourcing to the collaborations of research and awareness for rare diseases. Yet within the technology is the humanity and curiosity that leads to innovation.  

Hopes and hurdles in the fight for Issac and his rare disease

Adriana Barton

Canadian press The Globe and Mail shares the story of a young patient diagnosed with MPS VI, an extremely rare metabolic disorder. The article explores the burden rare disease patients face without a large enough population of patients to submit to drug testing, as well as pharma's general reluctance to invest in drug development for small populations.

Employee Social Media Policies After NLRB Appointments Invalidated by Federal Court ... Everything You Know Is Wrong?
David Harlow
The National Labor Relations Board has issued a series of reports based on its decisions in cases regarding employer regulation of the use of social media by employees. Now that the validity of recess appointments to the NLRB has been upended by the DC Circuit Court of Appeals, these – and many other – NLRB rulings are technically invalid. Should health care employers therefore ignore the NLRB precedents on regulating social media? Harlow says no – the contours of the rulings should still be followed in sensible social media policies.

Who is the Healthcare Consumer?

Nicola Ziady

Breaking down age brackets, Ziady explores connecting the brand with the consumer. "More and more, patients are shopping around for care, the same way they do for other consumer services. Patients are actively researching their clinical care alternatives to determine how and where they will spend their healthcare dollars."

2012 Health Survey Data

Pew Internet

Check out this preliminary version of the September 2012 health survey data from the Pew Research Center. A full report will be released later in the year.

#HCSM Review - Call for Submissions, Feb. 13 Edition

The Afternoon Nap Society will once again be hosting HealthCare SocialMedia Review, the blog carnival for those interested in health care social media. 

The Feb. 13, 2013 edition will focus on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient (are we truly ALL patients?).

Email submissions should include the following information:

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent link to post:
Name, Username, Nickname, or Pseudonym:
Description or brief excerpt:

Deadline for submission is Tuesday, Feb. 12 at NOON. Email submissions to theafternoonnapper (at) gmail (dot) com. 

#HCSM Review - Sept. 19 Edition

The HCSM Review is a peer-reviewed blog carnival for everyone interested in health care social media. This edition is loosely based on the theme of motivation and how it plays into our roles as patients, providers and caregivers. 

Motivational Lessons
"I look back now and wonder how my working self would assess my own motivation and participation over the last few years. On a good day I'd be the perfect patient, self-motivated, engaged, determined. On a bad day I'd be the surly, non-compliant patient threatening to throw a cup (or worse) at my head. It's just luck of the draw." - Rusty Hoe, Living With Bob (Dysautonomia)

Lather Up: doctors resistant to patients’ requests for hand-washing

"As patients we need to learn to work with what is until doctors and nurses are more accustomed to working in partnership with patients." - Martine Ehrenclou

Blogging and the Experience of Cancer Survivorship
"The apparent randomness of a cancer diagnosis shakes your sense of identity to its very core and afterwards nothing will ever feel certain again. Friends and family may find it hard to comprehend why you are sad or depressed. Understandably your loved ones want you to put your cancer behind you, to get on with your life and move forward, but it isn’t so easy." - Marie Ennis O'Connor, Health Care Social Media Monitor

Other favorites from this week's blogosphere:

Patient Satisfaction: It Is Not Just About Marketing

"Patient satisfaction can be broken down simply into two main issues… expectations and perceptions. Patients enter your office with a perception of the care or interaction they desire. They then decide if you met those expectations." - Howard J. Luks

Efficiency, Value, And Unexpected Consequences
"I settled into my morning routine, but couldn't shake the feeling that something was wrong... I entered the exam room to find my first patient anxiously clenching the exam table. Before I could open the chart, he began to sputter." - Jordan Grumet

Voices of Shared Decision Making

"We need to focus on re-educating clinicians about how to partner with patients — how to elicit patient preferences, and how to anticipate when a decision is a preference-sensitive one. We also need to coach patients, to help them not only learn information relevant to their treatment choices but also to help them find ways of communicating their desires more effectively to their clinicians." - Peter Ubel

Mission: Peace For You

"When we feel love and kindness for others, it not only makes others feel loved and cared for, but it helps us also to develop inner happiness and peace." - The Dalai Lama

Look for next week's HCSM Review to be hosted by the venerable chancellor of SMUG (Social Media University Global), Lee Aase. 

#HCSM Review - Send In Your Submissions

What motivates you? What demotivates you?

On Wednesday, Sept. 19, The Afternoon Nap Society will host HCSM Review—the peer-reviewed blog carnival for everyone interested in health care social media. This edition will focus on the theme of motivation and how it play into our roles as patients, providers and caregivers.

Submitting a post is easy. Simply email a link to your post or posts (no more than two submissions per author) by midnight (ET) on Sept. 17. The more honest the post the better—this isn't about being a hero; it's about carrying on. For good measure, format your submission email as follows: 

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent link to post:
Your Name: Name, Username, Nickname, or Pseudonym
Description or brief excerpt:

Learn more about HCSM Review by visiting HealthWorks Collective. 

Patient Privacy in the Age of Social Media

Every Sunday night, healthcare Tweeps from around the world come together for the #hcsm (healthcare and social media) chat. The chat moves at lightning pace — and often overwhelms those new to the conversations. However, the #hcsm chat is the place to jump in with both feet. This Sunday, the first topic addressed dealt with patient privacy and social media. I've excerpted my own comments and those directly in return. 

What does patient privacy mean in age of social media? And, does that mean patients have a right to broadcast their care?

@AfternoonNapper Pt privacy=I can share about my health & care. What I share makes me fair game to be contacted by like-patients.#hcsm

@AfternoonNapper Broadcasting care - good & bad - falls under the realm of free speech; therefore pts have the right whether HCPs like it or not.#hcsm

@AfternoonNapper However, what is of interest is where the line of slander/libel can be drawn in re: the "print" of SoMe re: docs/facilities. #hcsm

@RyanMadanickMD >> @AfternoonNapper T1 do you think that there are HCPs who don't agree or don't like it? #hcsm

@AfternoonNapper >> @RyanMadanickMD Absolutely. If an HCP is criticized via SoMe, that has greater reach than simple word-of-mouth per usual. #hcsm

@TaborF You can choose to share your personal information, but can't always control what others will do with it once it's out there #hcsm

@AfternoonNapper >> @TaborF Spot on. And THAT's a huge part of the problem. #hcsm

@AfternoonNapper Frankly, doctors are the least of my worries re: disclosure of private info. Worry more about facilities, other patients, nosy ppl. #hcsm

@crgonzalez >> @AfternoonNapper And what about the terms of use from FB which tried to "own" all the content shared on its platform. Remember that?#hcsm

@AfternoonNapper >> @crgonzalez Another great point and one that would be a fascinating legal battle when it comes to healthcare/HIPPA/etc. #hcsm

@schwartzbrown Seems as if people feel they need to protect "patients" from themselves. #hcsm

@AfternoonNapper >> @schwartzbrown Patients do need some protection from themselves re: SoMe simply due to confusing legalities/policies. #hcsm

@AfternoonNapper Just because my patient group is largely on FB, that doesn't mean that all our participants know the nitty gritty of FB rules. #hcsm


To keep the conversation going — what do you think about patient privacy in relation to social media (Twitter, Facebook, discussion forums, etc)? There are commonly referred to risks. Do you feel that you fully understand the risks? Do the pros outweigh the cons? Have you directly experienced discrimination as a result of health disclosures on the internet? What can patients and group leaders do to address privacy concerns?


This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: write about the best conversation had during the week.

Medicine X's Alliance Health ePatient Scholarships

It was at some point this past summer that my favorite massage therapist mentioned Stanford professor Abraham Verghese's book "Cutting for Stone." With her feet firmly pressed against the small of my back, she said I should check out the medical novel, loosely based on Verghese's time spent growing up in Ethiopia and his choice to become a doctor. I scratched in the title on my mental list of books to be read. My interest arose from my desire to combine medicine and literature in a work of my own one day.

Only a month or so later, a tweet came across my feed from an anesthesiologist and professor at Stanford issuing a call for medical patients to apply for scholarships to attend the Medicine 2.0 conference. The conference would bring together the two seemingly disparate worlds of healthcare and social media. Verghese would be a keynote speaker. I took it as a sign. I applied, and to my great delight, was selected to be one of a handful of patients to join the medical innovators, social media facilitators, and creative minds coming together to dialogue about how to improve medicine as we know it.

Going to Medicine 2.0, I already knew several interests I wanted to explore. Despite being a 30-something, I had largely resisted the whiles of Twitter and Flickr, used Facebook mainly to keep up with friends and family (even though I managed two Facebook pages for my employer), and maintained a blog more as a personal journal than as a form of outreach. I wanted to learn more about how these social media forms could better be used and, given my medical interests, how they could be tied in with healthcare. The concept seemed so foreign to me. I'd been impressed when I could find an email address for a doctor, much less actually send the doctor an email and get a response. Medicine 2.0 introduced me to the world of participatory healthcare in which doctors not only had email addresses but in which they actively sought out and interacted with patients via social media. Furthermore, these interactions were affecting in-office visits as patients used applications on their smart phones and tablets to self-track things like blood pressure or glucose readings. A virtual Pandora's box had been opened, and my world was changed.

Given the ideas and the tools, I began to see how I could affect my own influence on healthcare through social media. Free social media platforms were the perfect means by which to share my story and connect with other patients, which for me had been nearly impossible provided the rarity of my diagnosis——intimal fibromuscular dysplasia. Thanks to the Mayo Clinic, a healthcare and social media leader, I connected with my first fellow patient on the hospital's message boards. Thanks to all that I learned and the inspiration I gained from Medicine 2.0, I began a social media-based group called FMD Chat so that fellow fibromuscular dysplasia patients could more easily connect with one another. FMD Chat incorporates Facebook, Twitter, Google Plus, and a blog to facilitate peer-to-peer interaction and spread awareness of what it means to live with the disease. To be able to provide patients with this experience and add to the dialogue has given me a sense of purpose and a way to turn a potentially devastating diagnosis into something good.

All this goes to show that patients can, do, and will continue to influence healthcare in ways great and small——and every contribution is, in its own way, meaningful. Patients' attendance at medical conferences is therefore becoming a new normal. Those who already are activists within their disease communities should seize opportunities such as those provided by Medicine X's Alliance Health ePatient scholarships to attend conferences and learn how to best use social media to provide support; those who are not yet activists should seize such opportunities to learn how to get involved. The word activist may seem daunting to some. Let it not be. An activist is one who is active within his or her own family or local community as well as one who takes part in national organizations and shares his or her story on an international level. An activist is, at the most basic level, someone who cares. An ePatient activist is someone who cares about medicine——be their interest in technical research or caregiving, hospital design or disease awareness, advance directives or doctor-patient communication——and how medicine impacts the lives of  patients and providers.

The application deadline for Medicine X's Alliance Health ePatient scholarships is March 15. Apply. Learn. Get involved. Make a difference. Show that you too care.

I Am More Than My Disease: A Project of Identity for World Rare Disease Day — Gallery

In support of World Rare Disease Day, The Afternoon Nap Society presents "I Am More Than My Disease: A Project of Identity." Participants were invited to create their own word cloud images including the name of their disease and words they use to describe themselves. The project aims to call attention to the individuals who live with disease—rare or otherwise—and their lives outside their diagnosis.  Too often we forget that patients are people and should be treated as such.

"Think Pink"
Amanda

"I Am More Than My Disease"
RAwarrior

"I Am More Than My Disease"
dazahayes

"I Am More Than My Disease"
Kelly Hayden

"I Am More Than My Disease"
Anonymous

"I Am More Than My Disease"
Hershel Keck

"I Am More Than My Disease"
Reality Gasps

"Chronic Life"
TransformYourChronic Life

"I Am More Than My Disease"
 Laura Haywood-Cory

"I Am More Than My Disease"
HurtBlogger

"I Am More Than My Disease"
Caroline

"I Am More Than My Disease—no-bandaids-please-help-us-find-a-cure"
peppermintpatti

Feb. 29, 2012

World Rare Disease Day

I Am More Than My Disease: A Project of Identity for World Rare Disease Day

On Feb. 29 patients affected by rare disease will celebrate the 5th Annual World Rare Disease Day. There are more than 7,000 rare diseases in the world today. More than 30 million Americans alone are affected. However, unlike cancer or diabetes or Alzheimer's, rare diseases are not in the general public's frame of reference. World Rare Disease Day aims not just to spread awareness of any one disease, but of all rare diseases and the advocacy that is needed in order for patients to get the care they need and deserve.

Patients with rare diseases often are highly engaged in their own healthcare. They ask questions; they push for answers; they reach out to one another. While having a rare disease and pushing for quality care can be all consuming, patients with rare diseases are first and foremost people—daughters, husbands, artists, sports fans, foodies, writers, runners, leaders, friends... 

In support of World Rare Disease Day and the people who are the patients, The Afternoon Nap Society will become host to an online gallery titled "I Am More Than My Disease: A Project of Identity." Participants are invited to create their own word cloud images that include the name of their disease and words used to describe themselves. Images submitted to The Afternoon Nap Society will be featured on the site in the week leading up to World Rare Disease Day. 

Want to participate? Here's how:

1) EXPLORE: Visit wordle.net or simply click on "Create your Own." 

2) DESCRIBE: In the large text box, fill in the name of your disease (such as Marfan syndrome, Huntington's disease, or prostate cancer—one need not be a patient with a rare disease in order to participate). Continue filling in the box with words that describe you as a person or things that you like. Examples include: mom, swimmer, cook, gardener, cats or music. Wordle will treat each word as an individual word, so remember that phrases such as "I love chocolate cake" will be broken up. You may simply wish to include the words chocolate or cake. 

3) CONTINUE: Once you have filled in your disease and descriptive words, click the small button that says "Go."

4) ADJUST: On the next screen you will see your Wordle creation and will be allowed to adjust the Wordle's font, layout, colors, and more. 

5) SAVE: Once you are happy with your Wordle, click "Save to public gallery" on the bottom right side of the Wordle. You will be given an option to input a title, username, and comment. Title your Wordle "I Am More Than My Disease." Fill in a username of your choosing so that your Wordle is attributed to you. Your username need not be your actual name or any other personal identifier unless you want it to be—just make it something so that at least you know which Wordle is yours! Click "OK" when done.

6) SEND: The last screen will feature your Wordle and provide a html code in a blue box below it. Copy the code and paste it into an email to Afternoon Napper. Title your email "I Am More Than My Disease" and hit send. Wordles must be submitted by Feb. 20. 

7) ENJOY: Return to The Afternoon Nap Society during the week of Feb. 22-29 to see your Wordle and others that were created. 

What will your Wordle say? 

Just Because I Have The Same Disease As You That Doesn't Mean I Like You—But That's OK

I enjoy playing mahjong. When I was a kid, I was a fan of Oregon Trail on the Apple IIe, but mahjong held my interest game after game. Sometimes I planned my moves. Sometimes I just tried to see how fast I could match tiles. I always liked that mahjong was a game that I could play by myself.

Only children like myself are used to doing things alone and often prefer it that way. Indeed there is an element of control that we relish. Doing things alone involves no compromise, no sharing, and complete autonomy in rigidly staying the course or wildly abandoning plans to do something else entirely. An only child left to her own devices may go from building elaborate Lego houses one moment to playing dress up the next to building Lego houses in dress up clothes because there is no one to please other than herself. The only child grows into an adult who may well prefer to work alone, stubbornly refusing to delegate lest a project be done differently than imagined. The only child may turn down help because she has learned that no one else can be depended upon. The only child is therefore self-reliant to a fault. 

Chronic patients mimic much of an only child's behavior. The chronic patient is used to no one understanding how she feels. The chronic patient may withdraw because it is easier to be alone than to try to keep up with everyone else. The chronic patient operates on a schedule much her own so as to move with the ebb and flow of her health, one day hosting a dinner party and the next day never leaving the bed. 

The chronic patient who is an only child is a creature who is both fiercely independent and profoundly lonely. I am that creature, and my loneliness is further compounded by the fact that I have a rare version of a rare disease. There's a saying often used in the medical field that if something looks like a horse, and walks like a horse, and sounds like a horse, it's probably not a zebra. As an only child who is a chronic patient with a rare version of a rare disease, I can't help but imagine myself as a sullen green unicorn sitting in the corner who no one will play with because even though I could be really nice and awesome, sullen green unicorns are just weird. Even zebras think so. 

That's the problem with diseases, rare or otherwise. Simply because one shares a diagnosis with another person, that doesn't mean the two will get along. Every patient who has cancer doesn't like every other patient who has cancer. Every patient who has lupus doesn't like every other patient who has lupus. Every patient who has psoriasis doesn't like every other patient who has psoriasis. Patients must have the ability to pick and choose their disease friends the same way they pick and chose their regular friends. Attempting to pigeon hole patients into disease specific groups may actually fragment the disease population more so than allowing patients to form their own unique sub-groups. Imagine "Libertarian Breast Cancer Survivors Who Love to Knit" or "Rheumatoid Arthritis Sufferers Who Enjoy Baking and Bowling." There might be only five group members across the entire nation, but the level of connectedness that those five members would feel among one another would be tremendous. Support need not even be disease specific. That may mean that a sullen green unicorn, a zebra, a couple of otters, and a cheetah all decide to hang out together. There have been stranger friendships. So long as the motley crew can support one another in the way one another needs, the group serves its function. 

I've had the pleasure of getting to know several fellow chronic patients via social media and my relationships with these patients are based on who we are as people. There's @HurtBlogger who has arthritis and with whom I shared late night tweets about headaches. There's @joltdude who has diabetes and with whom I've tackled patient care and end-of-life issues. These are people about whom I've come to care. There's @katherinekleon who experienced spontaneous coronary artery dissection and with whom I've talked about patient-driven research and who, when she learned of my upcoming surgery, wished me "a soft cotton hospital gown with a pretty print that wraps ALL around." That's what I call true patient support. 

As the health care industry continues on its quest for true Medicine 2.0, those who are organizing patient support groups would be well advised to remember that above all else, patients are people. If patients can not get the support they need from people they like, from people they trust, then patients will grow to feel even more alone, embittered and embattled, like sullen green unicorns wishing to hell that the rest of the animal kingdom would ask them to play. 

All Things #hcsm

Each Sunday at 9 p.m. EST medical social media Tweeps barrage the Twitter stream with tweets carrying the #hcsm tag. The tag stands for healthcare communications and social media, and those who follow it are involved discussions covering a wide range of topics (T1, T2, etc) from the role of technology in the exam room to patient support groups. The chat, created by Dana Lewis, moves at lightning speed because so many Tweeps are in on it and there's so much to be said in the hour's time. Even if one only "lurks" (reading without tweeting), the chat is educational, inspiring, thought provoking, and a great way to "meet" new people to follow. Throughout the rest of the week, the #hcsm tag pops up from time to time on individual tweets that are related to the overall topic of healthcare and social media, so at any time a search for the tag is sure to turn up something worth reading. In the spirit of the #hcsm chat, today's blog post covers a range of topics that, at least for me, are just as exciting. 

TI - Stanford & Medicine X

It is my great honor to have been selected to serve on Stanford University's Medicine X ePatient Advisory Panel. This panel will be responsible for helping ensure that the patient voice is part of the Medicine X conference that overall will address emerging technologies in healthcare. My fellow panelists are Sean Ahrens, Hugo Campos, Steve Wilkins, and Nick Dawson—each of whom I had the pleasure of meeting at Stanford for the Medicine 2.0 conference in September. To keep up with plans for the conference, a project of Stanford's own Anesthesia Informatics and Media Lab and directed by Dr. Larry Chu, visit medicinex.stanford.edu or follow @StanfordMedX and #medX on Twitter.

T2 - Doctors 2.0 & Paris

Continuing the healthcare and social media conference trend is the upcoming Doctors 2.0 & You conference to be held in Paris in May. The conference is a true international affair and an incredible opportunity to look beyond the American healthcare system for ideas. Previous speakers whose names ring (or should ring) a bell with those on this side of the sea include Brian Vartabedian of Texas Children's Hospital/Baylor College of Medicine and author of 33charts.com, Victor Montori, who has worked with the Mayo Clinic's Social Media Center, and Gilles Frydman, co-founder of the Society for Participatory Medicine. Denise Silber, conference organizer and president of Basil Strategies, has said that she'd love to have me there. Registration fees may be waived for international patients; however, travel to Paris is not covered. Like most patients, I am unable to afford a trip to Paris, regardless of purpose, and so am putting out the call for sponsorship—for myself and for fellow patients who hope to attend the conference. For now, Silber is the contact for patient travel sponsorship. Thanks to the suggestion of the ever creative ePatientDave, I am hoping to set up a Kickstarter.com page to help bring in donations, and if it is approved and goes live, I will be sure to let you know. My estimate is that the trip will cost approximately $2,500 for airfare and hotel. As an alternative, I also have set up a PayPal donations account. My involvement in healthcare, social media, disease awareness, and patient advocacy is all building up to a book, which I will begin writing in 2012. Should I exceed my sponsorship goal (a girl can dream!), then funds will be used for a planned writer's residency at Wellspring House and actually bringing the book from concept to fruition.

T3 - FMD Chat

Shortly after my diagnosis with intimal fibromuscular dysplasia, Kari and I stumbled across one another on a Mayo Clinic discussion board when we both responded to another patient's posting about having high blood pressure and gastrointestinal issues but having passed all GI screenings with flying colors. Kari had responded that the young female patient should consider having a vascular work up. I agreed with Kari 100 percent—the patient's symptoms and history so closely mirrored my own—and responded to the patient saying as much. Kari and I alerted on one another like two hound dogs on the trail of the hunt, which is to say we recognized ourselves in one another. Sure enough, we shared the FMD diagnosis. I can not impress what a life-altering moment it was to have not only unexpectedly stumbled across another FMD patient but my first fellow FMD patient. Kari and I instantly clicked and became fast friends. Every time I hear her Minnesota accent, I think of Frances McDormand, William H. Macy, and Steve Buscemi. She's a firecracker who, after already having a successful career as an RN, has made it her life's work to be a patient advocate for those with FMD,  is the vice-president of the Joe Neikro Foundation, which is dedicated to raising awareness of and researching aneurysms, and founded the Midwest Women's Vascular Advocates group. One night Kari and I had a conversation about how, as a patient, I had never had the experience of any kind of support group—for my bypass, for my stroke, for my aneurysms, for FMD. The next morning FMD Chat was born. The group's goal is to offer non-medical, peer-to-peer support to FMD patients around the world, and it is based on Facebook specifically so that it is open, accessible, and free. Since it's creation, FMD Chat has blown me away. There have been other online groups, but the pervasiveness of Facebook has allowed for more connection between patients than I had previously thought possible. There are so many patients who are frustrated and scared and who simply want to talk to another patient with their same disease so that they don't feel like such a freak. My fellow FMD patients move me with their stories and their compassion. I am so glad to be a co-founder with Kari because I know she is someone whose heart is in the right place and will always put patients first. 

T4 - Upcoming Gigs

I will be writing a guest blog post addressing talking about dying and advance directives for the Death with Dignity National Center this month. Learn more about end-of-life issues by participating in the weekly TweetChat on Wednesdays at 10 p.m. EST. Follow #EOLChat. On Jan. 11, 2012, I will be moderating the hospice and palliative medicine TweetChat, which is held each Wednesday at 9 p.m. EST. Follow #hpm. The absolutely fabulous Renee Berry and Christian Sinclair organize the chat. 

Challenge: SoMe Recruitment

I will be the first to tell you that I was slow to get on the social media bandwagon. Heck, I eschewed technology in general. My iPod mini—the one that came out in 2005—was a gift. I refuse to buy a new one because my little green, black and white screened one still works, and really I don't use it that much. I still buy CDs for the most part. I do not have a Kindle or the like. I prefer real books. My phone is a feature phone.

However, this year it seemed that I couldn't much ignore the technology going on around me. I stopped driving a stick shift Subaru and bought an automatic Scion, which has a USB port and a kickin' stereo, so I bought two eight gig jump drives to hold my music—I load them using my 2006 MacBook, and my iTunes is filled with music from my own CDs, save for podcasts of This American Life and Prairie Home Companion the very existence of which I find ironic. We finally got a flat screen TV earlier this year—it was an open box deal, and the high pitched whine of the giant lurker in the corner had just gotten to be too much, but we won't pay for HD cable. I traded my PlayStation 2 that I never played for a Wii that I never play. My husband and I received a TomTom GPS unit as a gift, and I'll say we like that when we travel. I love my new Canon PowerShot SX 230HS because it doesn't take four AA batteries like the model we replaced.

So with all that personal technological progress, it was no real surprise when I also joined the Twitterverse. Granted there were two work accounts that I was part of managing. We created the accounts because we felt like we had to create the accounts—not because we wanted them or knew what to do with them. Each account has a couple hundred followers and is listed. I created a work account for myself, again because I felt like I should, like it would help boost our presence. My Tweets are rather devoid of personality and engagement seems low, though again there are a couple hundred followers, and I'm on a few lists. Our HR rep was kind enough to create an account too. She seems to alternately enjoy reTweeting my Tweets and heckling me.

Then I wrote a blog post. I'd been blogging in one form or another for a few years, first on MySpace (ha! remember MySpace?), then via notes on Facebook, and then via this blog here. Blogging has been a more natural outgrowth because writing is my profession. It is how I earn money and how I blow off steam and get out what's in my head. I began this blog to address issues that came up in my first year of teaching. But since I am also a chronic patient, personal health matters crept in from time to time. And I like to garden. And I am a wife. And I care about the environment. And so many things. Defining myself is difficult. Editing myself down is difficult. And I blogged about that. And the next day, AfternoonNapper was born.

AfternoonNapper is an attempt to separate out some of my interests and identity from the rest of my interests and identity. AfternoonNapper likes, above all else, naps and particularly those in the afternoon. She also is a self-proclaimed health activist in that she cares passionately about improving healthcare and patients' ability to communicate with their doctors, caregivers, and selves. AfternoonNapper also likes to be a little snarky and amusing. She may—may— have Tweeted a comment at Stanford's Medicine 2.0 about BJ Fogg needing to get more sleep so that he'll look better while swimming naked, which is only a joke that those at Medicine 2.0 will get—but trust me, it's EXACTLY the kind of thing that someone should Tweet in reply to a keynote speech by a Stanford professor and behaviorist of great renown.

It was the creation of AfternoonNapper that led me to Stanford. I learned of the conference scholarship through Twitter. I connected with fellow ePatients and scholarship recipients through Twitter. Twitter has opened up my world to an amazing wealth of knowledge as I discover doctors and patients and health organizations who are doing cool things and working to change the world. Even though the insights comes in 140 character blurbs, they can be profound. I have made more truly useful connections via Twitter in the few short months I have been using it than in years of MySpace and Facebook put together. Who knew? That said, Facebook has recently been of great emotional support because it has allowed me to connect specifically with other fibromuscular dysplasia patients and message back and forth with them on a more personal and detailed level.

The lesson to be garnered is this—don't discount social media. Yes, it's got a bad rap. Yes, there is a ton of wildly unreliable information floating around out there and social media promulgates it. Yes, there are mean and ignorant people who using social media to spew hatred and fear monger. Yes, texting language will make your brain rot. But when used for its highest and best purpose, social media is amazing. It allows our words to reach beyond our communities. It allows others' words to reach into our communities. It is our responsibility to make sure that we capitalize on social media's highest and best use. We must each take on the task of ensuring that what we're putting out there is adding to the dialogue. (Or telling a good joke. We can always use a good joke.)

The very ability of social media to connect us with like minded people is its flaw. It is easy to converse with those with whom we agree, and so we very well find ourselves preaching to the choir. Social media allows for a larger collective of opinions—agreements and, more importantly, disagreements that serve to awaken the thought process, illustrate differences, and highlight areas where additional discourse is needed. Though we can not ensure that those on the opposite end of our spectrum will listen to us, we can at least listen to them and use their arguments and ideas to shape our own; just disagreeing with someone doesn't mean that all their points are invalid.

Therefore my challenge is this: get someone new into social media. At Stanford, the focus was on the role of social media in healthcare. Many doctors and ePatients were ardent advocates of using social media. Many were ardently against it. For this group, I say—try it. Start a Facebook page for the practice. Offer tips on eating well, updates to billing practices, even pictures of the trees outside the office front door changing colors with the season. Start small. Start somewhere. Get on Twitter. Even if you don't Tweet, follow those who do. Outside the health community my challenge is much the same—bring someone new to the social media table. Run a non-profit organization? Let your volunteers Tweet about why they got involved. Own a design business? Tell folks about how good design is not as available to those in need as it is to the wealthy. Information is more accessible than ever. We must ensure that information has meaning.

On Site @ Medicine 2.0

My formal reflections on the experience of being at Medicine 2.0 will come later. Honestly, I'm not even sure that I can blog in the daylight.

I want to say this though—thank you. Thank you to everyone who is here. Thank you for listening and engaging and caring. Please carry the lessons you have learned back home, but do not keep these lessons locked in your head. Share them. Talk to colleagues. Talk to supervisors. Don't just talk to colleagues and supervisors who have a pre-existing interest in the topics covered. Seek out those who actively avoid the topics. Do not brow beat. Who ever wanted to get involved with something that a dour, angry person proposed doing? Be enthusiastic. Enthusiasm is contagious.

Who am I, and Where am I Going?

I've been having trouble parsing my identities—writer, editor, teacher, patient, wife, student... Each title fits, and yet there are still others that I could use depending on the context—gardener, traveler, daughter, foodie, eco-friend, arts lover, sports fan... At any given moment I am each and every one of these things; but who I identify myself as changes based on who is in the room. Does this make me interesting, diversified, and busy or just plain crazy, undirected, and harried? Do I admire people who have a clearly defined personality or do I see them as one-dimensional and boring?

Twitter—of all things—is what has gotten me to contemplate these questions. I'm not an avid "Tweeter," but I joined the Twitter ranks a few months ago to learn more about the effects of social media. (Don't I sound like an old fart?) What has struck me most is that those I follow each has his or her own "thing." Mark Peters, aka wordlust, is irreverent. Andrew Evans, aka WheresAndrew, does travel. Ed Nickow, aka TheCubsInHaiku, offers just what his handle implies—coverage of Chicago Cubs' games in haiku form. Each has a specific focus. They don't tweet about their other hobbies or their families or any other aspect of their lives that doesn't fit within their narrowly defined Twitter persona. I don't know how to censor my self that way. My blog is a testament. There are posts about teaching. There are posts about gardening. There are posts about a short-lived position I had as a test proctor. There are posts about my medical history. There is no focus. There is no theme.

Unless, of course, the theme is me. But where will that get me? Isn't it little more than an exercise in self-aggrandizement to write post after post about the details of what's going on in my life? Who cares? What am I contributing to the dialog? I am not nearly famous enough for the putterings of my life to attract an audience. There needs to be something more. There needs to be form and substance. What can be accomplished when one is forced to adhere to form can be much stronger than when one is given free rein.

What do I want to write about? What do readers want to read about? Help me figure it out.