(My) Patient Leadership in Health Care

They say my grandmother used wait on the stoop of the family’s crackerbox house in Southside Chicago and watch as my father walked to school to see if he would get in a fight before he got to the end of the block. The eldest son of a Polish steel mill worker who dropped out of high school, my father was on the wrestling team and cleaned the inside of tanker trains. But he was smart. He liked science and math, went to college on a scholarship, majored in economics, and went on to Cornell Law School.

As a lawyer, he represented the incarcerated’s rights at the state department of corrections, practiced defense in the state supreme court, and became chief legal counsel at one of the state’s 16 public universities. He helped build houses with Habitat for Humanity, served midnight breakfast to college students during exam week, and tutored his daughter who did not inherit his aptitude for science and math. He taught constitutional law and never once found himself on the wrong side of the law save for a speeding ticket or two. Upon his retirement, he was vice chancellor of technology transfer as well as chief legal counsel and one of the university’s most senior and respected staff members. One could say he did all right.

He did all right by mom and me too. Ever a man of his word, if dad said he was working late, he was. He saved for family vacations by eating a sandwich at his desk for lunch everyday. He kept the official score book at my softball games, sitting on the bleachers in his suit and tie, and bought, arranged, and delivered 40 long-stem roses to my mom on her 40th birthday.

My father’s faults I’ve come to understand more as I’ve grown older — not simply what they are (any teenager will tell you what’s wrong with her parents), but why they exist, how they influenced me, and which ones I too carry. He gets angry when he’s scared and feels out of control. He’s somewhat emotionally awkward and expresses affection by trying to foresee all possible problems, caution against them, and devise a plan to prevent them whether he knows what he’s talking about or not.

I don’t have his temper. Being in situations in which my life has been on the line taught me a lot about what’s really worth getting worked up over. I am more spontaneous, often to his ire.

He became more than his humble hand foretold, and he achieved that goal while always taking the ethical path. For that I admire him greatly. For instilling that same sense of ethics in me, I am thankful. And it is his grit, his drive, his call to service, his belief in doing what is good and right that have become my own.

From age 24 to 31, I underwent triple bypass surgery, suffered a stroke, lost my left kidney, had four brain aneurysms repaired, and survived a gastric rupture before I was diagnosed with a rare variant of a rare disease called intimal fibromuscular dysplasia. Its cause is unknown. There is no treatment. Such things might crush some people. I, on the other hand, persisted.

Throughout my period of survival, I learned so much both practical and personal, and I found a calling in patient advocacy. I became an advocate because I could use my pain for the good of others.

As my leadership role grew, I felt I lost my place as a member of my patient community. It seemed that I could not ask those who looked up to me for the support I needed. My professional distance actually isolated me from what had drawn me into advocacy — my fellow patients. 

The kind of leader I want to be has a heart, and honestly I lost touch with mine. Putting my head over my heart had been critical to my survival — a learned coping mechanism. Similarly, my style of leadership came to be, at least outwardly, impenetrable. I strove to be judicious and fair, analytical and unflinching. I cultivated that well, so well that somewhere along the way I began to lead only with my head, and I sequestered away my heart such that it could not betray me.

It was a fellow patient willing to give me a proper shaking by my emotional shoulders who brought me to the realization that in order to be a good leader, I can not lead only from my head, and that the opposite is not to lead only from my heart. I am pursing training so that I may learn to balance both, re-establishing fellowship to rekindle the passion I know lies within me, and kindling the belief that I can become the leader I’ve never had — the kind I would follow into battle, the kind with whom others hope to work, the kind who teaches others how to be good leaders too. 

Hurt Society Blog Carnival Call: ePatient Travel Edition

Fellow advocate HurtBlogger and I have been traveling a lot lately — cross country flights, multiple hotel room nights, long drives, public transportation, business and pleasure. All the travel takes its toll. We aren't always as rested as we should be, perhaps have always eaten the best, have logged too many steps, or carried too many things. But our advocacy work is important enough that we are willing to make certain sacrifices in order to represent.

This week she and I have met in San Francisco for a rare day of rest and relaxation prior to a Medicine X planning session. Although she lives in Southern California and I in Western North Carolina, our meeting comes on the heels of trip to Boston and Philly — her for the American College of Rheumatology and me for the American Society of Nephrology. Catching up this morning over breakfast, we discussed our travels. We didn't focus on sights we'd seen or foods we'd eaten. Frankly those kinds of things are rather low on the list compared to networking and learning.

Instead we lamented the physical demands of traveling and dealing with an industry — though often called "hospitality" — that is less than patient-friendly. I've heard more stories in the past two years about patients with invisible disabilities being disbelieved and harassed while seeking needed accommodations such as extra time to board a flight, a room with a refrigerator for medication and nutrition or assistance carrying luggage. Many such things can be had by paying more money, but as patients know — problems most easily solved by throwing money at them are the ones that present some of our greatest challenges.

How might we better address these challenges? As individual advocates, we and many others have voiced our concerns and pointed out problems — but that doesn't mean that we've been successful in making it easier for others. So we're launching an offensive. In preparation for the holidays' busy travel period, HurtBlogger and I are joining forces to bring you the Hurt Society Blog Carnival ePatient Travel Edition that will pull together posts highlighting what it's like to travel as a patient.

We want to hear from you. This isn't just about venting — it's about calling out bad policies and proposing solutions; it's about recognizing those who are getting it right and holding them up as shining examples; it's about sharing tips to help others survive whether that's enrolling in TSA's Pre-Check program or finding hotels with free breakfasts.

Submit your post to us for review and possible inclusion by noon (Pacific) on Saturday, Nov. 21. Be sure to format your submission with the following:

Post Title:
Blog Title:
Name:
Twitter Handle:
1-3 Sentence Post Summary: 

Note: perhaps you are not interested in writing a post of your own but know of one that has provided you with valuable tips. Send it to us!

Look for the Hurt Society Blog Carnival ePatient Travel Edition to post this holiday season. 

Out of Place, In Our Element at Medicine X

I don't remember the flight to San Francisco the first year I went to Stanford for Medicine 2.0 conference. I don't remember the car we rented. I do however remember the drive to Palo Alto, highway lanes crowded with 5 p.m. traffic moving purposefully like so many industrious bees, in and out of lanes, swiftly circumnavigating the bay, heading south, south, into the city suburbs.

As we turned east toward Palo Alto, the commuters' sense of urgency gave way to tree-lined streets and bungalows with practical but well-landscaped yards. I'd first read about the digital Mecca in WIRED magazine in the late 90s, and then, as one of Douglas Coupland's wanna be Microserfs and an intellectually-endowed teen living in a rural Southern community, had daydreamed about as a place where the local chamber of commerce must have erected signs saying, "Welcome to Palo Alto! Nerds are safe here."

I'd imagined more habitrails and Legos, more glass and steel. And grass... I'd imagined grass. But in the autumn light of late September, the California landscape appeared a golden brown of scrub brush, cedar, and palms. Stanford's cardinal red banner stretched across the main entryway to campus, and I, aged 31 with an undergrad degree in journalism from Chapel Hill and a master's nearly complete, thought one thing only — I don't belong here.

My attendance at Medicine 2.0 was made possible only by scholarship, my application a result of happenchance and blind ambition. Late to the social media party, I had only recently signed on to Twitter, my moniker, AfternoonNapper, coming as an extension of my blog's title: The Afternoon Nap Society. Despite its name, TANS was less about napping and more about the reasons I was compelled to nap — surviving triple bypass surgery, a stroke, bypass failure, the loss of my left kidney, four brain aneurysms, and a gastric rupture. On Twitter, I was able to indulge my need for knowledge by following the nation's top medical institutions. Stanford was one of them.

When the call for scholarship applicants came through, I tweeted back to conference organizer, Dr. Larry Chu, that I wished I could come but the travel would prove a financial hardship. Since having a stroke, I had been fortunate not to lose my job, but my absence partnered with general economic downturns led to my position being restructured within the company such that I became only a part-time employee. Dr. Chu responded to my tweet simply yet enthusiastically, "You should apply!"

Should is a word with many implications. It is advice; it is a mandate; it is a theory. However, it does not suggest the outcome of what will happen when whatever should happen actually does. Once in Palo Alto, I sequestered myself. I knew no one, and thus was on guard lest anyone try to get to know me. The first morning of the conference, I stubbornly refused to ride the conference shuttle from the hotel to the Li Ka Shing Learning and Knowledge Center next to the Stanford Medical School. Instead, I took a bus. I arrived in time for breakfast, which I ate alone standing in the cool sunshine on the Li Ka Shing center's balcony while all the other conference attendees mingled and met. They were fit and tan, California cool, carrying iPads and iPhones and iPods, and I did not belong there.

But Dr. Abraham Verghese was a keynote speaker. I'd brought my copy of his narrative medicine novel "Cutting for Stone" along with me in the hopes that I would have the opportunity to get his autograph. It was a surprise to make my way into the plenary hall and find that the ePatient scholarship recipients not only were seated together but seated in front — in the very front — of the room, and gift bags had been placed on each chair. Inside was an autographed copy of "Cutting for Stone." Senior Associate Chair for the Theory and Practice of Medicine at Stanford, Dr. Verghese spoke of the ritual of the patient exam. As he described his slow and gentle movements from the pulse point on a patient's wrist to the tender fold inside the elbow, I felt a warm wave of recognition and took no more than a moment to realize why. The subtle techniques Dr. Verghese described were the same that my vascular surgeon, one of the top in the nation, had used upon my initial visit six years prior. My heart could not have been more full of admiration, so much so that as others applauded the close of Dr. Verghese's speech, I seized my personal copy of "Cutting for Stone" and made a beeline for the far side of the stage. Dr. Chu and Dr. Verghese stood together talking as the audience dispersed for a coffee break, and I stood three feet in front of the two doctors, clutching the novel with both hands at waist level, smiling, and vibrating with nerves, which was when Dr. Chu introduced me to Dr. Verghese by name. I didn't know Dr. Chu even knew my name. He had no reason to know my name — first and last, said with a welcoming arm extended. I hope that I presented myself with a certain sense of decorum; however, I fear that instead I gushed. After I thanked Dr. Verghese for signing — and personalizing — my book, I all but skipped back to my seat.

I bore similar enthusiasm for Associate Director of Digital Strategy for the Pew Internet & American Life Project, Susannah Fox. The work she presented included a specific focus on the role that social media played in connecting members of the rare disease community. After 31 years without a name for my collective ailments, I had just that August received the diagnosis of intimal fibromuscular dysplasia, a rare version of a rare disease. I'd met my first other FMD patient on the Mayo Clinic's social network, so Fox's research was electrifying — not only was I not alone, I was on to something in my quest to connect with other patients online. Again lacking any proper sense of restraint, I headed straight for Fox after her speech, failed to introduce myself, and immediately began talking. I like to play with placing emphasis on the different words in the short question Fox must surely have been thinking to herself. Some versions are more flattering than others.

"WHO is this woman?"
"Who IS this woman?"
"Who is THIS woman?"
"Who is this WOMAN?"

Fox, who seemed a good foot taller than I, reached down to examine the badge bearing my name and Twitter handle that hung from around my neck, suddenly took a step back, opened her eyes wide, and cocked her head, her long Honey Nut Cheerio-colored hair falling over her left shoulder.

"YOU'RE AfternoonNapper!" she said.

I blinked — a lot.

"Um, yeah," I replied, eloquent as ever.

"Oh my gosh; I've been reading all your tweets," Fox said.

I remember absolutely nothing of what happened next. Susannah Fox, former online editor of U.S. News and World Report, current Pew Internet researcher, was excited to meet ME.

These interactions were formative experiences, ones to which I directly attribute my development as an advocate. I had been an ePatient for years without knowing it — I don't remember not being empowered, engaged, and online researching my own health. However, it had never occurred to me that anything about what I did was somehow special, my viewpoints unique, my knowledge valuable. I was, and always had been, just me. The advocate in me apparently needed a little encouragement, and while I always do, I am fortunate to find myself in the position of now being able to be one of the ones doing the encouraging.

As my flight prepares for landing in San Francisco, I am eager to meet the new class of ePatient scholars at Medicine X — a conference of Dr. Chu's own creation, "an academic conference designed for everyone," that is now in its second year. I am fortunate to be a part of the MedX ePatient Advisory Board, which helps oversee the scholarship program that enables patients like me to attend. What patients stand to gain from participating in conferences like MedX is perhaps exactly what keeps more in the industry from including them — their voice, their confidence, their empowerment to push for patient-centered and patient-designed changes in healthcare. We belong here.



Learn more about and apply for MedicineX's 2014 ePatient Scholarship Program at http://stanford.io/1eAwQOD.

Patient Engagement: Are Apps Good Engagement Tools?

This week MedCity News shared an article about patient engagement that posits, "Patients today aren’t truly engaged with health technology or even with their own health." The article, written by Laura Wagner and originally appearing in VentureBeat, is a commentary based on a session from HealthBeat 2013, a VentureBeat presented conference.

VentureBeat "covers disruptive technology and explains why it matters in our lives," which well explains the session's title: “Consumer Health Apps: Human Centered Design." However, if the panel's conclusion was that patients are not engaged with health IT or their own health, then the human centered design part of consumer health apps is clearly failing—because the apps are not designed to meet consumer needs. No one needs an app.

In order to even want an app, a patient—engaged or otherwise—must first have a device. Far too many advocates on the health IT bandwagon assert that smartphones are ubiquitous. According to Pew Internet statistics, 85 percent of U.S. adults have a cell phone. Of that 85 percent, 53 percent have a smartphone. Of the 53 percent who have a smartphone, 52 percent have used that smartphone to collect health information, Pew Internet reports. The additional questions to ask are—of that half of a half, how many are using an app and how many remain patients of Dr. Google? One report from Adeven, a mobile analytics firm, provides some insight—nearly 400,000 apps sit in the iOS App Store classified as "zombies," generating few downloads and little to no revenue for their producers. 

The beauty of the internet's search function is the power of suggestion. One doesn't need to know exactly what one is looking for in order to embark on a search. With each return of results comes an addition of knowledge that enables one to further refine one's search and/or run off down an entirely different rabbit hole of information. Apps limit this kind of unfettered exploration. Their specificity of operation—the very thing that makes them a marketable app—is exactly what keeps them from being the go-to tool for inquiring minds. To want to use an app is to want to do a specific thing. To engage patients in this form of health IT we must not ask how we get patients to use an app, but how we get patients to want to do the certain thing in question. 

Whether we want patients to keep track of their blood pressure, count calories, log blood glucose readings, or learn about cellular reproduction, we must first find their source of motivation. Games and rewards only go so far in triggering prolonged motivation—but show me the game that rewards me not with new flowers for my virtual garden or a special frog to breed and instead with reduced insurance premiums and I'll make it part of my daily routine. What patients want is to define their own goals and outcomes. To be "healthy" is couched in institutional ideology of standards and measurements; yet a patient who couldn't care less about his BMI and blood pressure may care enormously about living long enough to walk his daughter down the aisle or celebrate his 50th wedding anniversary. To engage a patient in his own health one must find what matters to that individual patient. 

To engage a patient in health IT is thus a secondary matter, and engaging patients in mobile health IT a tertiary one. The benefit of utilizing health IT to achieve the patient's self-defined goals and outcomes must be clearly defined with a detailed measure of cause and effect. Should the aforementioned patient who wishes to walk his daughter down the aisle receive a doctor's recommendation to lose 10 percent of his body weight, the benefits of doing so must be illustrated in relation to his goal. According to a recent New York Times article, a recent national study found that "patients who lost a mere 7 percent of their total body weight reduced their risk for diabetes by 58 percent." For the patient to gain his own definition of meaningful use out of any health IT, the data input must provide data output that illustrates what successful weigh lost accomplishes in relation to his goal—the real impact on his disease risk, how much easier it is for his heart to pump, the decreased burden on his knees. Such feedback ties directly in with health literacy, as in order to engage in one's health one must understand the why before even getting to the how.

Join in the discussion about patient engagement at MedCity News' ENGAGE conference, held June 5-6 in Washington, D.C., where I'll be on a panel talking about what patients do and do not want from those seeking to engage us. 

Whichever Way You Swallow It - A New Medication Adherence Method

I bought a pill box.

It is a box — for pills.

It is not small, or trendy, or cute, or ironic. It's not some repurposed cigarette case in which I keep Midol and Band Aids. It's a giant, plastic, albiet somewhat colorful, rectangle. Forget pocket-sized. This is a portfolio of pills, a veritable Advent calendar of pharmacology.

Each morning, I snap open a color-coded translucent lid marked with a time and respective day of the week and turn the entire ratting contraption over to dole out a pre-selected handful of medicine. The morning brings lots of colorful ovals—purple, green and blue, white, among others. In the evening I repeat the process, distributing pink, beige, and aquamarine. Saturday brings the cobalt blue sheen of Vitamin D. Snap, shake, pop, swallow. In only a matter of days, my medication process has become a thoughtless process of repeated motions, and I think I like it that way.

I've resisted buying a bill pox for years. "They're for old people," I said. "They won't hold all my medications," I said. "I'll just have to refill it every week," I said. I spent hours — yes, HOURS — shopping online for the perfect bill box. I wanted something that didn't scream "geriatric." Many seemed too much like those automatic pet feeders with rotating lids such that only one dose at a time would be revealed. More sophisticated ones cost a small fortune and featured alarm bells for audible reminders. Quaint little pretty boxes in designer colors wouldn't hold a day's worth of pills, much less serve any truly useful purpose. No, the only option that featured compartments large enough to hold a daily vitamin and then some with enough capacity to store a week or more's pills were the dowdy plastic boxes with S M T W T F S in raised black lettering across the day's lids.

I refused to go there.

"I can remember to take my medications," I said. "I know what day it is," I said. "I never get yesterday mixed up with today," I said.

And as luck would have it, my health improved, or at least the pharmacological treatments for my conditions lessened. "Two pills. I can take two pills," I said. "I'll even add some supplements for good measure," I said. So I did. Sort of. A daily vitamin was easy enough. Pro-active, I tried the Vitamin E, the Flax Seed Oil, the Red Rice Yeast... there was aspirin that came and went. I never knew exactly how to answer the nurses as they updated my medications list. "Yes, no, maybe, sometimes," I said.

After enough time, the medications list began to grow again. When I packed for an overnight trip, my duffle bag doubled as an unwieldy maraca. Bottles of pills inevitably worked their way below the shirts and underwear to hide. In September, while souvenir shopping in San Francisco's Chinatown, I relented that perhaps a small bag would be useful in corralling my mobile medicine cabinet and purchase one in purple brocade.

The bag was charming enough. In addition to my pills, it could hold a toothbrush, travel-sized toothpaste, digital thermometer, and a few bags of tea. I was pleased. However by late winter, the little purple bag was a struggle to zip. There were the rounds of antibiotics for the bout of pneumonia and cough medicines to suit. A new diagnosis meant the addition of new tools with their own carrying case. Additional lab tests meant an old med once discontinued came back into the mix, and finally so did another old med. The bare minimum of what I was to take no longer fit in my pretty purple bag, much less the "just in case" drugs I carried, well, just in case.

So while standing in line at the drug store, the giant, plastic, albiet somewhat colorful, rectangle pill box caught my eye. It was on sale, and I was tired. I'd noticed that over the past few weeks it had become considerably more difficult to remember exactly what I had taken and when. Furthermore, managing side effects and possible interactions was trickier. I feared missing a dose less than the possibility of doubling a dose, which was a distinct concern given that my methodology of remembering what a pill looked like in my hand before I took it seemed not to be quite as accurate as it once had been before.

The giant, plastic, albiet somewhat colorful, rectangle box wasn't perfect. Technically it was designed for a patient taking medications four times a day; however, it was somewhat divided in the middle such that I could easily make the top half — morning and mid-morning — into a week's worth of day and night and the bottom half — afternoon and evening — into another week's worth of day and night. I wouldn't have to worry about reloading for two whole weeks, a factor that greatly appealed to the scatterbrain in me. The downside was that at any given time, I could be carrying around two whole weeks of pills with me, which would still be less than my habit of carrying entire bottles of pills, the loss of which would amount to well over $100 in co-pays much less the hassle of having refills authorized. With two weeks of pills on hand, I could reasonably leave the pill bottles of medication at home; however, without the pill bottles, no one would have access to the names and dosages of my medications in the event of an emergency.

Upon unwrapping the giant, plastic, albiet somewhat colorful, rectangle pill box at home, I found that the designers of it had considered of this identification problem. Included was a self-stick label to be filled in with just the sort of information as one would find on a pill bottle, which while woefully inadequate, was at least a step in the right direction.

And I too am headed in the right direction, as what I have labeled a personal defeat — buying a pill box — has, in fact, improved my medication adherence. When I failed to take my medication properly, it wasn't because I didn't want to take it properly, it was because I was too arrogant to admit that I might need help doing so. Such is a continually critical battle in being a patient — learning when to make use of the resources available rather than sticking out the old way of doing things simply out of resistance to change. Illness changes us whether we are accepting of it or not. It is up to us to face change in a manner such that it may be incorporated into our lives with the least amount of disturbance to the things that we want to actually want to do. Rather than spend five to ten minutes every morning and evening peering at pill bottle labels trying to remember what I have and haven't taken, I now only have to spend five to ten seconds swallowing my pride.

From the Patient's Point of View

It is so wonderfully weird to be written about rather than to be the one doing the writing...

I've been in the news lately.

It's a matter of split personality—there's AfternoonNapper, and then there's me. Is she me? Am I her? Can a me be a we?

So many of us are dueling our dichotomy. Our halves are split and split and split again. I am a patient. I am a leader. I am a writer. I am a reader. I am a wife. I am a persona. Regardless, I am continually happy to be able to say — I am — and these two words increasingly become a so much more powerful battle cry compared to the projections of I will or the impermanence of I was.

The Problem of Being a "Patient"

There is a woman who graduated in the top 10 percent of her high school class and was accepted into the University of North Carolina at Chapel Hill. While still in college, she began her journalism career as a state employee in the public relations department of one of the University of North Carolina's 16 public institutions. Her early duties included writing press releases and assisting in annual report development for one of the university's partner institutions, which was charged with improving teachers' skills across the state.

As a junior in college, the woman joined her university's award-winning newspaper, quickly rising through the ranks from a staff reporter to desk editor. She partnered with other journalism students to facilitate a program in the local middle school, teaching children writing and technology skills to produce a student newspaper. When chosen to serve as the college newspaper's managing editor, the woman elected to stay on an extra summer school semester in order to fulfill her duties. 

After graduating, the woman took a job out of state. The job immediately thrust the young reporter into covering a murder trial in which the accused allegedly stabbed his girlfriend in the face and neck 27 times and subsequently blamed the attack on four young black males. The story was only the first in a long line of violent crimes including other murders, bank robberies, and fatal accidents the woman would write about over the course of the year. 

The woman took another reporting job that would allow her to move back to her home state. She spent the next four years writing in-depth enterprise and news feature stories for a two county area, as well as managing the newspaper's four-county arts and entertainment section. She was promoted to the position of special sections editor, overseeing all editorial and design work for the company's contracted publications. 

When the news company purchased a national magazine, the woman was made associate editor. During her time as associate editor the magazine, the woman went to graduate school, earning her master's degree and teaching at the same time. She was named the magazine's managing editor while still completing her degree and teaching, successfully balancing her responsibilities—in addition to those of being a wife—such that the magazine repeatedly won the title of best niche publication in the state's press association awards, the master's degree was completed on time, and her students overwhelming passed competency exams and developed a greater appreciation for the English language. Today, the bimonthly magazine draws its largest subscriber base from across the Southeast, and in addition to managing the print magazine, the woman also oversees all social media and sponsorships. 

In her spare time, the woman began a community service to assist a segment of the population. The service became internationally successful, and in order to provide service to additional people around the world, the woman partnered with well-known organizations in the United States and Europe. These partnerships and the woman's plans to grow her services led her to incorporate as a nonprofit and pursue IRS recognition as a 501c3 to allow donations to her organization to be tax deductible. She enlisted a group of advisors including a woman with an undergraduate degree in social services and graduate degree in human resources who also oversees her company's financial records; a woman with an undergraduate degree in communications and a graduate degree in liberal studies who also has worked as a pharmaceutical representative and is in charge of regional marketing for a large insurance company; a man with an undergraduate degree in business and graduate degree in accounting; and a man with an undergraduate degree in economics, law degree, and more than 25 years as chief legal counsel. 

How do you feel about that woman? 

Now... pretend that woman is a patient. 

Why must the "patient" label strip one of his or her accomplishments as an individual? 

Now... pretend that woman, who is a patient, is me. 

Patients will be the ones to change the system because patients are—before all else—people.

Support FMD Chat's bid for crowdfunding via MedStartr.It's all or nothing.

Keep Calm and ePatient On

This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: create your own "keep calm and carry on" poster. 

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.

Direct from ePatients & Doctors 2.0

This May brings about Doctors 2.0 & You, the only international congress devoted to the understanding of how physicians use new technologies, web 2.0 tools, and social media to communicate with other health care professionals, patients, payers, pharmaceutical companies, and public agencies. I am excited to be a part of this conference, held in Paris, as a representative of the ePatient community and participant in a panel addressing patients' motivation to utilize online resources to find health information and connect with others in their disease community.

It is my great privilege to be among the following panelists:

Kathi Apostolidis (@kgapo) is a Voluntary Sector Consultant and a Health Commentator. She is a two-time breast cancer survivor and a believer in the power of the internet and social media, as education and connection tools in healthcare. Kathi is interested in the ethical aspects of breast cancer, health and healthcare, and she speaks, writes and blogs at http://epatientgr.wordpress.com/ about participatory medicine, patient rights, informed shared decision making, health technology assessment, social media in healthcare, e-health, innovation in healthcare, e-patients and health literacy. Κathi is actively involved with cancer patient organizations in Greece and internationally.

Larry Chu (@LarryChu) is a practicing physician who runs the Anesthesia Informatics and Media (AIM) lab at Stanford University. He is an Associate Professor of Anesthesia on the faculty of the Stanford University School of Medicine. Dr. Chu organized the Fourth World Congress on Social Media and Web 2.0 in Health, Medicine and Biomedical Research (Medicine 2.0 @ Stanford) in 2011. He is the Executive Director of Stanford Medicine X, a conference that aims to explore how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. When not organizing conferences, Dr. Chu studies how information technologies can be used to improve medical education and collaborates with researchers in simulation and computer science at Stanford to study how cognitive aids can improve health care outcomes. Dr. Chu also has an NIH-funded clinical research laboratory where he studies opioid analgesic tolerance and physical dependence.

Recognized by US News and World Report as one of America's Top Sports Docs, Howard Luks, MD is a Board Certified Orthopedic Surgeon who believes that humans are innately social, health is social, and that health care by nature should be social. He entered the intersection of health care and social media long before the pavement was dry. As an early adopter of Twitter (@hjluks), Dr. Luks also runs a blog, a Facebook Page, a YouTube channel and a personal site to educate, interact and engage with his patients. Aside from seeing patients in his practice, Howard serves as an External Advisory Board Member of the Mayo Clinic Center For Social Media, and has served as the Chief Medical Officer of many fledgling start ups in the health care space. Howard currently serves as a strategic advisor to physicians, hospital systems, healthcare start-ups and the orthopedic industry. He uses his voice as a physician leader in healthcare social media to actively encourage his colleagues to consider participating in the Health 2.0 movement. This passion finds him frequently speaking on social media topics as they relate to healthcare access, quality, HIT and cost transparency and the value propositions of a deep digital presence.

Len Starnes (@LenStarnes) is an internationally recognized pharma thought leader in e-business. With 14 years of experience in this field, Len led global e-business for Bayer Schering Pharma’s Primary Care business unit. Physician communities, social media policy, multi-channel marketing in Europe, Asia, and America are just some of his areas of expertise. Len was previously based in Paris as head of corporate communications for Raychem Corporation and in London with the public affairs department of the Association of the British Pharmaceutical Industry. Len is a physicist and MBA, by training, with degrees from BU, Manchester University, and UCL.

Ian Talmage is a 38-year veteran of the pharmaceutical industry. He is currently Senior Vice President of Marketing at Bayer HealthCare Pharmaceuticals, where he has held significant positions in Pharma Development, the Strategic Planning Group and Global Strategic Marketing. Prior to this, Ian has worked with a number of major Pharma organisations, including Astra, Novartis, SmithKline and Yamanouchi, and his experience embraces Strategic Planning, Partnering, Mergers and Acquisitions and Global Marketing. In addition, Ian has worked in many different geographic areas, having been based in the UK, US, Sweden, Switzerland, The Netherlands and now Germany. Being a cancer survivor has changed and influenced Ian’s perspective on how the industry must interact with patients. While receiving healthcare he gained an appreciation for the type of support and communication most beneficial to individuals impacted by disease. He became convinced about the importance of creating a dialogue with patients and patient organisations and continues to push for industry to be a central part of the conversation in supporting patients. His dedication to this perspective is part of both his professional actions and personal commitments.

Bart Brandenburg (@bartbrandenburg) is a Dutch MD who has lived, learned and worked on three continents. He has over 25 years of experience as a clinician and researcher in hospital and primary healthcare. At present, he is CMO at Medicinfo, a healthcare innovation company in Tilburg (www.medicinfo.info) and has specialized in e-health. He is in charge of Medicinfo’s knowledge center that cooperates with national and international academic institutions. Brandenburg participates in the Center for eHealth Research at the University of Twente. He is a member of the Social Media Working Group of the International Medical Informatics Association (IMIA). With two colleagues, he is cofounder of @tweetspreekuur, a free primary care service via Twitter. In 2010, this activity won him the Medicine 2.0 Maastricht Award.

Erik Jansen M.D. (@Janszoon) worked in internal medicine and pulmonology but followed his passion and chose to become a general practitioner in a small town in the south-east of the Netherlands. In 2009 he co-founded the @tweetspreekuur primary care service on Twitter, gaining him first-line hands on experience in delivering health care via social media and doing practical research at the same time. Erik is always looking for innovative ways to “hack the healthcare system” as he demonstrated in his REshape Pecha Kucha in Nijmegen. Having been a speaker at the Maastricht and Stanford Medicine 2.0 conferences, he is very much looking forward to sharing some unconventional ideas with the Doctors 2.0 & You crowd in Paris.

Express Yourself

In Irving Stone's biography of Vincent Van Gogh there is a line that reads, "Many times in your life you may think you are failing, but ultimately you will express yourself and that expression will justify your life." It was years ago that I first came across this maxim, and it immediately halted my reading and jolted my heart. There is no other quote that has resonated so deeply within me and continued to do so.

I've been lucky enough to be a writer in some form or fashion for the vast majority of my life. While I was in kindergarten, a local writing teacher worked with our class, and I wrote a story about a grasshopper. My mother, of course, saved the story in a box along with school photos, misshapen pieces of art class pottery, and report cards. The writing teacher had hailed my grasshopper story as very descriptive and encouraged me to keep writing. Several years later, the writing teacher—Kathryn Stripling Byer—was named the state's poet laureate. This summer, she featured my poetry on her blog. Life has a way of arching back on itself.

This Saturday, I was stirring a pat of not-quite-butter into a bowl of peas in preparation for dinner when it struck me that I am experiencing a similar arch. While in college, my news writing instructor required that each student write a variety of stories—crime, courts, etc.—as well as pick a beat about which an additional two stories would be written. I chose the medical beat. Throughout the class, my favorite story was one I wrote about the Amplatzer Septal Occluder. In a catheterization laboratory procedure, the device is run into the heart and through the defect (a.k.a. hole). It helps to picture the device as an Oreo. One wire mesh disk is deployed on one side of the hole (cookie), then a tiny wire mesh waist (creme filling) connects to a second mesh disk that is deployed on the other side of the hole (cookie). The two disks cover the defect completely and allow heart tissue to grow around the wire mesh structure. With the Amplatzer Septal Occluder, what was once open heart surgery became a procedure with a one- to two-day hospital stay for recovery.

At the time I wrote the story, Dr. Michael R. Mill, an associate investigator on a 1998 AGA Medical Corporation study about closure of atrial septal defects using the Amplatzer Septal Occluder, was the Chief of Cardiothoracic Surgery at UNC School of Medicine. Though a student, I was permitted to interview doctors performing the first surgeries at UNC using the septal occluder and the mother of an adolescent patient who had the device implanted. Fortunately, I made it through college before becoming the professional patient that I am today; nonetheless, the impact the Amplatzer Septal Occluder would make on medicine and on patients' lives was not lost on me. I found everything about the story fascinating from the technical details of how the device worked to connecting with a worried mother who, by agreeing for her son to undergo a relatively new procedure, had found a way to lessen her child's trauma.

I don't know what about stirring a pat of not-quite-butter into a bowl of peas has to do with remembering my love for my first medically-based story. I also don't know why I didn't realize that there was something larger at play and redirect myself and my studies to capitalize on my interest. It has taken the past 31 years of wrestling with my own health and using my love for writing to express what I have gone through to get me to this point—the point that I identify myself as an ePatient, a healthcare blogger, and a patient advocate. I wholeheartedly embrace my suffering and my diagnosis with an incurable rare disease because by sharing my story and using my skills I may help others. Everything has arched back in on itself and finally come together such that ultimately I am expressing myself, and that expression justifies my life.

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. 

Output vs. Input

Hello? It is very quiet and still here tonight. 

It feels as though there has been too much output with too little input. 

There is a need for something fabulous to occur. *glitter* 

Instead, it is becoming winter. 

We turn inward. 

What will our frosty reflections bring about? 

Can hot chocolate soothe a soul to release its secrets? 

Everything I have told is too much, but it is not yet enough.

What if we all went silent? 

What if we refused to tell our stories? 

What if there were no stories to tell? 

We would cease to communicate.

We would stop being human. 

It would be so easy to fail to mark the passage of time with ceremony.

We could pass from one day to the next unfettered. 

Our sense of loss only comes in retrospect.

Like looking out on an empty driveway after company has gone.

We turn away.

How are we so alone yet all together?

Can we accept what we are given?

Everything I have told is too much, but it is not yet enough. 

(hat tip to Douglas Coupland, Microserfs, and the mind dump)

Not Cool, Man... Not Cool

It is 2:42 a.m. I am awake because there is something wrong with my butt. I know exactly what is wrong; however, I do not yet know the extent. The problem—and I CAN'T BELIEVE I'm telling you this—is that I have a cyst.

I happen to sit down a lot. I sit down a lot because I'm tired a lot because I've had a whole boatload of other health problems. I spend a ridiculous amount of time on the computer, and that requires sitting down a lot. I sit in these weird smushed up, twisted up positions, which apparently isn't good for the skin back/down there. From all I can figure, I have traumatized the skin, which has led to the current situation. I also have a very shapely booty. Apparently, shapely booty-ism can be a contributing factor.

I am mortified. 

Also, I feel kind of crappy. Today was the third day of waking up feeling pukey and self-medicating with Pepto and Protonics. I think I might have a bit of a fever. My back hurts, and it's been hurting for so long that I can't remember it not hurting. At least some of my back pain originates from the fact that my L4 and L5 vertebrae are off kilter. Last month, I turned to a chiropractor out of sheer desperation when I could no longer put on my underwear without propping up against either the bed or the dresser and groaning onerously. The chiropractor has helped some, though I admit that I am always skeptical of the practice and that my ten minute appointments, marked by loudly banging drop tables and gentle prodding, often feel like eating rice cakes—unsatisfying. However, the pain in my back is a dull ache that spreads into my buttocks. I have convinced myself that my cyst has grown to epic proportions, and when I go to the doctor, he or she will tell me that I need to have the majority of my butt removed, which is what seems to be the classic treatment according to The Internet. 

That's the problem with The Internet. The Internet provides information, yet typically does not put that information into context and typically exudes an alarmist nature. If we all believed what we read on The Internet, we would all be about to die of some absolutely horrible disease. Forum contributors share horror stories on what seems like a 9 to 1 ratio, which makes sense in regards to human nature—because few ever feel compelled to write, "I had this thing. It was treated. No big deal. Now I'm fine." Instead there are postings replete with failures to administer adequate pain medication, slow healing, terrifying side effects, and sometimes even pictures of profound disfigurement. I know. I've been reading these posts for the past three hours—and that's just in relation to the current medical situation at hand. 

I've spent enumerable hours reading about my other conditions including stroke, brain aneurysm, fibromuscular dysplasia, and gastric rupture. I read and research not because I am a hypochondriac—I've got enough stuff that's actually wrong to worry about what "might" be wrong. I read and research because I am a person who functions better when I have lots of information. I like to understand the history of a disease, it's epidemiology, it's treatments. Understanding diseases from a scientific perspective helps me get a handle on them from an emotional perspective. The human body is a truly fascinating thing, and if patients can get beyond the fact that fascinating (and sometimes terrifying) things are happening to their own body, then an illness is a wonderful chance to engage the brain and learn something new. Since being diagnosed with intimal fibromuscular dysplasia and tested for overlapping connective tissue disorders, I have become very interested in the endothelial cell. Knowing more about the endothelial cell probably will never help me unless I'm on Jeopardy, but it helps me help myself. Science takes away feelings of having bad luck. Science explains disease processes for exactly what they biologically and chemically are. 

One need not be interested in science in order to seek out scientific information about disease. One need only be curious. Research has shown that patients turn to The Internet when they are sick; however, I am continually surprised by the number of patients with whom I interact who have not done any research at all. These such patients befuddle me. I do not understand them. I do not understand how they can so blindly and blithely go to see their doctors and fail to engage in their own healthcare. Nevertheless, an internet search of any given disease can and will turn up a plethora of information that ranges from extremely detailed medical research to full-on quackery. It can be difficult for patients who are not researchers by nature to differentiate what is real, sound medical information from that coming from Aunt Sally Jo's House of Cards and Ill-Advised Shams. Real medical information can be daunting. It's a bitch to read. Most of the words are terminology only used within the profession. However, patients can still learn from reading medical information, particularly if they take the time to look up terms and exercise their critical thinking skills. A good place to start one's journey into personal medical research is at healthfinder.gov, which includes an encyclopedia, free health tools, and more. Beyond that, patients should look toward sites that end with .org, .edu, or .gov. There are, of course, reputable sites with .com or .net endings; however, the big players at the medical table typically will be found in the .org, .edu, and .gov communities. Use some common sense. If one fears he or she has rabies and one finds a site recommending drinking three gallons of buttermilk and rubbing his or her skin with salt, one would do well to think that the deadly viral infection could use more aggressive and scientifically-based treatment. Homeopathic and alternative treatments absolutely have a role in medical care. I am a fan of aromatherapy—peppermint for nausea, lavender for stress—and have had great results with acupuncture. I turn to chamomile tea before I reach for chemical sleeping aids. I've found yoga and massage to help relieve muscle pain. But if I break my arm, I'm not about to go chew some tree bark and forget about it. 

My discovery of a small pit in my sacrum occurred a few weeks ago; however, I dismissed it as some sort of run-of-the-mill boo boo. The second time it made itself known, I had my duty-bound husband investigate the area. He found nothing much cause for alarm. This evening, discomfort led to another investigation, and carefully chosen Google terms quickly led to the cyst's diagnosis. It seems that the area needs to be incised at the very least, and at the worse... well, I'm not going to talk about the worst. The beauty of The Internet is that it is available 24/7, so my restless mind was able to pour over several sites' worth of information, including one truly wonderful patient driven site, consequently working itself in a real lather. Thankfully, 2:30 a.m. on the East Coast is only 10:30 p.m on the West Coast, and one of my doctor friends on Twitter was still awake and able to provide a bit of advice—go to a doctor but not urgent care; instead I need a surgeon. I am decidedly not thrilled about this entire scenario, but to find someone knowledgeable, who actually has had the same problem before, to provide a bit of comfort at 2:30 a.m. is wonderful. That's another bit of beauty about The Internet—it and everyone on it is there for you when there's something wrong with your butt.

Give What You Get

"If you're going to leave me, I'd rather you go ahead and do it now."

I was 24 when I told my then-boyfriend these words. Altogether, we had been a couple for nearly six years, having met through mutual friends, spent our college years together, then, after my graduation and subsequent move for a job five hours away, entered a year attempting a long-distance relationship that crumbled. There was a year apart. I moved for a different job, somehow managing to be five hours away from the old job and still five hours away from the guy. Nonetheless, we found ourselves back together in May 2004. We tried to overcome our past, but the fact of the matter was that while we had both changed, we had trouble recognizing that in each other, so it was no great surprise that by winter we were both looking for an easy way out. And then I got sick.

Really, I'd been sick for years, but things had finally come to a head when an incident at work convinced me that I had to get my high blood pressure under control. I'd been having several unilateral headaches on my left side, which I dismissed as stress and heredity. While at my computer one such headache suddenly turned into a dizziness and a numb left arm. The feeling passed, but it got my attention—if I didn't do something about my blood pressure, which had peaked at 220/110 and tended to hover around 190/105, I was going to have a stroke. Since I had recently graduated and moved and then moved again, I confess that I hadn't been as on top of my blood pressure as I should have been. My doctor at student health had taken me off a few meds and put me on a few others to no avail. A doctor I saw while working the out-of-state job did the same. My blood pressure didn't budge. So when I showed up in my new family practicioner's office he recommended something else, "There's something really strange I'd like to have you tested for." I went for an MRI and the strange thing was found—the artery to my left kidney was more than 90 percent stenosed, which meant that the kidney was not getting an adequate blood supply and therefore was emitting renin to raise my blood pressure to try to force blood to the little dying organ. What the MRI also found was that my celiac and mesenteric arteries were 100 percent occluded. We didn't know why, but suddenly the severe gastrointestinal problems I'd had for years on end suddenly came sharply into focus. The arterial blockages were killing my system, and if blood supply wasn't restored, I stood a great chance of a) losing my kidney b) suffering complications from high blood pressure including a weakened heart c) losing my bowel. I was referred and then referred again. There was talk of a vascular disease. There was talk of major surgery.

And finally, there was talk of breaking up. I knew two things: I needed to pay attention to myself and not a shoddy relationship, and if I was going to get out of a shoddy relationship, I wanted to do it before things go ugly, before things got to the surgery and recovery and scars part. It was shortly before Christmas that I said, "If you're going to leave me, I'd rather you go ahead and do it now." And so he did. My parents went to my doctors appointments with me. I spent most evenings at their house, only driving home at 11 p.m. to feed the cats and go to sleep. Bypass surgery was put on the docket for July 5.

I hadn't really had much of a mind for dating. My situation was serious, not the kind of thing to throw at a new relationship, but there was a guy, a friend at work, to whom I had become close. We hung out from time to time, going on "not dates." He had never ever tried to make a move on me. I never made a move on him. Instead, we were just friends—blushing, awkward friends. The night before I was to leave for surgery, I was nervous and alone. I called my "just friend." "Talk to me," I said. "I don't care what you talk about, just talk to me." Three or four hours in to the conversation, I couldn't take it any more. "Travis, why don't you ever hit on me?" There was a long pause. "Well, I will if you want me to," he replied.

Travis came to see me in the hospital, which was three hours away. The surgery had been eight hours long, and afterward, I spent a foggy two, maybe three, days in the ICU. When I finally got to a regular room on the vascular floor, I hadn't eaten in days, hadn't had solid foods in a week, was unshowered, unshaven, and generally looked like a meat marionette held up by IV lines. I think he got to stay for 45 minutes before my meds made me sick and I threw him out of the room.

After two weeks in the hospital, I headed back homeward, but was too weak to live alone. I stayed with my parents for nearly a month. In that time, Travis and I resumed our hours long phone conversations. He came over to my parents' house and took me out for dinner and a movie. And still, he was perfectly, annoyingly polite. Without going into great detail, I'll say that on Aug. 13 I took matters into my own hands. The relationship was everything I'd never had before. We were married just over a year later on Oct. 20, 2006—this month we celebrate our five year anniversary.

In that five year span, Travis and I have gone through a lot with my health. There was the stroke, and the nephrectomy, and the four brain aneurysms, and the gastric rupture. We've gone through a lot in life. I made him let me get a dog (in addition to our three cats), we sold my townhouse and bought a bigger house, I lost my job after the stroke, I went back to school, I started working again part-time. Throughout it all, he's been stoic. He's been by my side. He's sponge bathed and cut up food when the IV in my hand won't let me and changed bedsheets and packed wounds with gauze and driven me to appointments and filled prescriptions and brought chocolates and held me while I cry and nagged me to do my physical therapy and has never once showed any signs of leaving. I don't know how he does it. Sometimes, I don't know why he does it. It would be so much easier for him not to. It would be so much easier for him to close off and close up and want nothing to do with me and my sickness. I try to give him as much as he gives me, but I know that that is impossible.

A lesson that sickness has to teach us then is that in sickness we must not always focus on that which we lose; we must look to what we gain as well. I gained a husband who is my joy, my solace, my caregiver, and my love. I also have gained a community in which fellow patients serve as caregivers, supporters, and friends. I have gained insight into myself, what I want to accomplish in life, and what is truly important and worth fighting for. I have gained experience and knowledge. When there is so very much to be lost and so very much that has already been lost, searching for what one has gained may prove difficult, but it is what we gain that fuels the fire to carry on.

The Creative Doctor

There's something to be said for those ubiquitous, out-of-date and well-thumbed magazines littering doctors' waiting rooms. One recent afternoon, I stumbled across a fascinating article in the October 2010 edition of Smithsonian about a law professor turned art historian who is teaching New York cops the arts of perception and description using great works of art. In short, classes of cops gathered at the Metropolitan Museum of Art and were asked to describe portraits without ever using the words "obviously" and "clearly"—two words that instructor Amy Herman says are too often used when a situation is anything but. What may be obvious or perfectly clear to one person may not be to another. Officers also were not allowed to point in the direction of what they described. The location had to become part of the overall description. The power of the class is summarized in a quote from Lt. Dan Hollywood who works a grand larceny task force. "Instead of telling my people that the guy who keeps looking into one parked car after another is dressed in black," he said, "I might say he's wearing a black wool hat, a black leather coat with black fur trim, a black hoodie sweatshirt and Timberlands."

Working with cops is a natural outgrowth of Herman's initial course in perception and description taught to an entirely different but no less important group—medical students. The power of description, though often subjective, can make all the difference in understanding a situation, what has happened, and what needs to happen. I can speak only as a patient, but contemplate the different conclusions drawn upon the following two descriptions: 1) My stomach hurts. 2) I have an excruciatingly sharp and unrelenting pain in the upper right side of my abdomen just underneath the rib line; this is the most severe pain I have ever felt. Which description will lead chewing some Tums? Which description will lead to an X-ray and discovery of a gastric rupture?

Effectively and clearly communicating with doctors is one of the best things a patient can do to improve the doctor-patient relationship and provide doctors with the information needed to best provide care. Doctors can do amazing things, but they are not psychic. Excluding situations in which the injury is obvious—say a broken arm—a doctor cannot simply look at a patient and determine everything and exactly what is wrong. That's why doctors ask questions. They're not interrogating or judging—they're getting information. How well a patient provides information can have a direct impact on his or her care. How well a doctor can relay that information to another doctor impacts how doctors communicate about patients and their care and how doctors may learn from one another, regardless of age, stature, and education.

In my English classes, I use a variation of Herman's method to teach students how to use adjectives and adverbs. Starting with the sentence "The tree fell," I ask students what they picture. Is the tree a dogwood sapling or an ancient oak? Did the tree come up at the roots or did it crack at the trunk? Did the tree crash down in the middle of the night, collapse in a snowstorm, or blow over in a hurricane? Did the tree fall on the house or out in the field? The point is not to encourage flowery and verbose writing, it is to teach students that if they want their reader to see what they see in their mind's eye, they must first tell their reader what to see.

The lesson gets to the heart of Jay Parkinson's talk at the Medicine 2.0 Conference at Stanford University. "The medical culture just isn't uncreative, it's almost anti-creative," Parkinson said. Parkinson is a doctor who graduated from Penn did residencies at St. Vincent's and Johns Hopkins. He also is creator of Hello Health, a cross between a social network and an electronic medical record, and the design firm Future Well. He believes that solving problems in the healthcare system isn't necessarily a matter of technology or funding or any other linear solution. To change the system one must change the culture. To change the culture, doctors must be taught to do more than regurgitate facts. They must embrace creativity, which in turn leads to innovation.

Parkinson discovered his own talent for photography while in residency. Not only was he good at it—Rolling Stone is one place to find his work—but photography provided him an outlet for expression. Parkinson advocates med schools teaming up with design schools and business schools to get creative juices flowing and give med students something to dream about outside their immediate field. If that's what it takes to make creativity part of the med school curriculum, so be it; however, creative outlets need not become major endeavors that spawn second incomes, and one need not even be good at his or her creative outlet of choice. The point is in the doing of it. One may bake—and bake badly—but the experience is still there, and if it is a passion, then experimenting and learning will occur so that in the end one has not just a satisfactory experience but a satisfactory product as well. "If you're going to innovate, you have to be wrong a lot," Parkinson says. Innovation itself may take on different forms from creating a brand new flavor combination for extraordinary cookies to a new surgical technique.

Those who engage in these creative endeavors are the ones who are the future of medicine, Parkinson says. "It's sad to me that medical schools look for the highest GPAs, the best med/MCAT scores, the people that can brown nose their way to the top," he says. "Those aren't good doctors, I'll tell you that much—it's the people who are well rounded, who are leaders, who have the courage to think differently and inspire us all."