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Showing posts from 2012

Mixed Emotions—A Christmas Story

When I'm in the kitchen, nothing else exists. There's no stress, no deadlines, no illness, no worry. I commune with pot and spoon and liken my seasoning and stirring to an indoor form of gardening—cheaper than therapy and resulting in good things to eat.

Unlike therapy, when my soul calls out in the dark hours, cooking and gardening don't keep office hours. There's an old R.E.M. song that I can't help but sing when I'm out pulling weeds by the light of the moon, "Though all the feelings that broke through that door/ Just didn't seem to be too real/ The yard is nothing but a fence, the sun just hurts my eyes/ Somewhere it must be time for penitence... Gardening at night..." Brutal cold and whipping winds made gardening impossible Friday night, so instead, I set about baking. Three runs of scones came together as amalgamations of flour, sugar, and half and half. I used my grandmother's cookie cutters to give them shape—candied ginger and coconu…

No, You Kiss My...

According to the results of 10 patient surveys conducted by HealthGrades.com, Dr. Larry M. Greenbaum's patient satisfaction marks are below the national average. A board-certified rheumatologist who graduated from SUNY Downstate Medical Center in 1984 and did both his internship and residency at Winthrop University, Greenbaum has been with Indiana Internal Medicine Consultants in Greenwood, IN since 1993.

His practice's office staff seems fine enough. For the ease of appointment scheduling, office environment and office friendliness the survey indicates that patients find these services to be "good" or, just marginally, "very good." But when it comes to wait time, things don't look so good. HealthGrades.com shows that patients are reporting a 16 to 30 minute wait while the national average is 10 to 15.

Perhaps patients spend this extra time waiting doing a bit of personal reflecting. Rather than reading old magazines, cleaning out their purses or checki…

French Revolution

It was something I said that broke the rank and file of emotion. Something about reliability. Her head bowed over her breakfast bowl of oatmeal and berries. There was a pause, and then... tears. I sucked in my breath. Sunlight, missing for the past two days, streamed in the hotel restaurant's dining room. I snatched my napkin from off my lap and deposited it on my empty plate, rose and turned to unleash my purse strap from the back of my chair, lifting it over my head and down to rest on one shoulder, its weight at my hip, weapon-like. We marched single-file and tight-lipped past the black-clad waiters and waitresses who smiled as a reflex.

She cried. She cried the tears that are squeezed from the inner-most chambers of the heart. Her personal war story was one of many battles—diagnosis and remission, diagnosis and remission, diagnosis and remission, with life laying siege each time in between. Though her arena differed from our own, the language of the campaign was so much the sa…

Just Like Me

The radio announcer's voice, mellow and moderated, speaks of a study Stanford researchers are conducting regarding post traumatic stress disorder and coping mechanisms. A group of patients, veterans young and old, of wars long-past and current, have gathered in Menlo Park, California where they focus in on meditation expert Leah Weiss's directions, issued in a voice equally mellow and moderated, to slowly take three deep breaths—in through the nose, out through the mouth.

Weiss has been leading these guided meditations for more than a year now. She directs the men to think of a person they care about, a family member or a friend, and to bring that person close to them. "Allow yourself to feel the presence of this person," she says. This alone is an exercise in will. These soldiers, though no longer in combat, still bear the marks of their training—the heightened sense of alert that any person at any time may represent a threat. Thus, in the civilian world, making fri…

Six Degrees of Separation From Caring

I was in a Wal-Mart parking lot in Goose Creek, S.C. when my cell phone rang. It was my roommate from my sophomore year in college, Natalie. We hadn't seen much of one another over the past three years as her study abroad and my graduation a year before her had put literal and figurative distance between us. It stuck me as a bit odd that she was calling out of the blue and even more odd that she was crying.

"I don't know how to tell you this... Gianni was in Bali," she said. 
The statement seemed incomplete. Gianni was my ex-boyfriend. He was from Switzerland. We met at the start of the year, as Natalie, a freshman, was dating Gianni's best friend Gian who was the son of one of her father's business contacts. Gian came from Switzerland to visit Natalie. Gianni, working in Chicago, came down to see Gian. Gianni and I found ourselves often shut out of the dorm room, so spent hours sitting out on the stairwell talking. Just before he left, we traded numbers, but…

Bucket List Redux

It's been sixteen months since I began putting together my bucket list. It's a list that I harbor in the back of my mind, sometimes as a source of inspiration, sometimes as a nagging burden, as I ask myself, "What am I doing today to cross something off my list?"

All too often the answer comes back as, "Nothing." I can't help but feel that I am dawdling, that I've grown complacent in my sense of time and purpose. However, looking back on my list, there are so many things that I have done within the sixteen months since first putting the list together that I never would have thought to put on the list—but in retrospect could have, had I known they were even possible.

I am reminded of Errol Morris' New York Time's column, "The Anosognosic’s Dilemma: Something’s Wrong but You’ll Never Know What It Is," which references Donald Rumsfeld's rather infamous quote from a 2002 NATO press conference, “There are known unknowns. That is t…

Lungs Like a Sponge - or - Lower Lobe Overthrown

Post-surgery, there was fluid on my lungs. They'd already threatened me with the administration of Lasix, a diuretic drug that for some reason greatly disagreed with my stomach, if I didn't make more use of my spirometer.

I hated spirometers. I'd hated them since four years prior when an eight-hour surgery led to fluid collection on my left lung. Every hour I was to suck deeply on the spirometer's mouthpiece for ten breaths, which measured my total lung capacity and tore at the limits of my swollen belly stitched together along the length of a fifteen-inch incision that traced the curves of my rib cage. Every hour I complained bitterly. Every hour my father told me to—rather appropriately—suck it up. I challenged him he could only continue to admonish me if he knew exactly what he was talking about and demanded that he perform the requisite ten breaths. A healthy lot, he consented, only going slightly cross-eyed and light-headed after the seventh or so breath. "Th…

"Tears can be easily misdiagnosed." A hurt blogger hurts back.

I don't remember how I met her—what hashtag or retweet sucked me in. I just remember the name—HurtBlogger. She'd named her condition Arthur (as in arthritis), liked the color orange, and didn't gloss over the grimy bits when it came to sharing what it was like to live as a chronic disease patient while still existing as a seemingly healthy, brilliant and funny young woman on the verge of getting married. We were cross-continent avatars, names without faces. And then, as all relationships are tend to do, it changed. I started looking for her tweets, keeping tabs on the arthritis flares, hospitalizations, and infusions.

It wasn't until I was standing in baggage claim at SFO on my way to Medicine X that I finally heard her voice. A tweet had come through asking, simply enough, if I would call her. Instantly, I suspected the problem—a family issue at home, once pressing, had become urgent. I tucked myself into a corner, dialed a strange number, and with a finger pressed in…

The Ethics of Pharma-Patient Relationships

It was fortuitous timing this week when I received an email from Denise Sibler, head of Basil Strategies and coordinator of the Doctors 2.0 & You conference in Paris, asking my opinion on the issue of ethics in patient-pharma relations.

"I can't identify a time when I wasn't interested in the ethical issues of health care and one of them is the pharma-patient relationship," Sibler said. "With the rise of the ePatient, many interactions and relations become possible, so new questions have arisen."

I'd just come from HealthCamp Kansas City where myself and three other patients were fortunate to be able to participate in a conversation with members of Eli Lilly's Open Innovation Team. Team members were seeking input on how to improve the clinical trial process by crowdsourcing ideas. Their focus was not simply on R&D but on the patient experience. Overall, the patient group's suggestions echoed those I heard during a similar conversation wi…

#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 se…

Side Effects

Tell your doctor if any of these symptoms, are severe or do not go away:
nausea
vomiting
stomach pain
heartburn or gas
diarrhea
constipation
decrease in appetite
weight loss
dizziness
drowsiness
tiredness
weakness
headache
sweating or flushing
confusion
difficulty remembering or concentrating
anxiety
uncontrolled, sudden body movements
shaking of a part of your body that you cannot control
decreased sensitivity (response) to touch
frequent or urgent need to urinate
difficulty urinating or pain when urinating
in men, difficulty achieving or maintaining an erection
back, muscle, or joint pain
pain, burning, numbness, or tingling in the hands or feet
swelling of the hands, arms, feet, ankles, or lower legs
dry mouth
hallucinations (seeing things or hearing voices that do not exist)
fainting
chest pain
slow, fast, or irregular heartbeat
shortness of breath
difficulty swallowing
double vision or other changes in vision
nausea
diarrhea
constipation
changes in sex drive or ability
drowsiness
increased sweating
dizziness
heartburn
sto…

#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

19 Days of Living with FMD - Day 2 - A Rare Disease in Focus

Eighteen days - that's how long FMD Chat, a fledgling nonprofit organization dedicated to those affected by the rare disease fibromuscular dysplasia, has left to raise $1,274 more dollars in order to reach its MedStartr goal of $5,000. Why do I care? Because I have fibromuscular dysplasia and FMD Chat is my organization. FMD Chat relies on social media to connect patients around the world with the peer-to-peer support that makes living with a rare disease less of an isolating experience.

What is MedStartr? MedStartr is a crowdfunding platform specifically designed for healthcare. It's like Kickstarter, but not. It has given FMD Chat access to a group of potential donors who would never otherwise know about or have interest in contributing to a small group of rare disease patients. However, many donors still remain "potential" donors and the small group of rare disease patients still need donors' support. If FMD Chat does not meet its $5,000 funding goal by Sept.…

19 Days of Living with FMD - A Rare Disease in Focus

Sometimes it's hard to understand just what it means to be a patient. It's even harder to understand what it means to be a patient with a rare disease. So - I'm going to show you.

To put it very bluntly, fibromuscular dysplasia has tried to kill me many times before. I'm doing my best not to let it. FMD Chat is raising funds via MedStartr, so that the organization can grow to support more fibromuscular dysplasia patients like me around the world.

FMD has no cure, but at the very least we can care. We have 19 more days to raise $1,274 dollars, so for 19 days—or until we reach our goal—I'm going to show you what it's been like, and what it continues to be like, to be me, a patient with FMD.

WARNING: it's going to get graphic.

DON'T WANT TO SEE IT: help FMD Chat reach its goal before I get to the emergency surgery pics.

Day 1 This is my right kidney.
It is the only kidney I have.
My other kidney was removed when I was 29,
after my renal bypass failed.

Living & Giving Wholeheartedly

It's 3:30 a.m. I have not yet been asleep. There's too much to do. Too much to worry about. I am counting down the days until October when, as of right now, each day does not bear a color-coded task to be completed. Right now, the only things that have to be done in October are return from the Medicine X conference in California, meet my editorial deadline for the magazine of which I am editor, go to the dentist, and send the magazine to press. I should also probably celebrate my wedding anniversary.

The problem is that between now and then I will inevitably create at least a dozen more things for myself to do. I am responsible for at least half of my heavy load. Glutton for punishment, I fill my time with intensive responsibilities rather than enjoy the company of those I love and the things I like to do. The matter is complicated by the fact that I enjoy my self-imposed work. September will mark a year's time since I truly threw myself into the realm of healthcare and so…

Lament for the Fifth Cranial Nerve

My right side
is my dead side,  where the nerves fried,  but I tried  to piece it back together.
My left side was my bad side, would just abide, but my pride forced me to be its master.
My inside is where I hide and confide that i lied, it long stopped getting better.


Posted on the occasion of a friend having also become a young stroke survivor. 
Learn more about the signs of stroke.

Metaphors of Depression - or - Help. I'm in a hole.

I'm in a hole. I'm in a hole, and I've been in a hole.

A hole is dark. A hole is deep. And given enough time spent in a hole, one begins to find the hole comfortable or, at least, comfortably familiar, which makes crawling out of the hole less appealing. Eyes adjust to the dimness; skin adapts to the dankness. To crawl out of the hole is to be blinded by the light, it is to be overwhelmed.

Living outside the hole is less difficult than crawling out of the hole; yet no part of living in proximity to a hole is easy. One is constantly aware of the hole's holeness. The hole is always there. What varies is how much energy one must expend on not falling in the hole. At times one may simply know that the hole exists. At other times one may walk directly to the rim and say, "Look there's a hole; I will not fall into it." Yet again, one may stumble, crashing in up to one's shoulders, clawing handfuls of dirt and sticks and stones for traction and still be able t…

Today's The Day—FMD Awareness Day

On Monday, July 23, fibromuscular dysplasia patients and those who are family members, friends, and healthcare providers to FMD patients are asked to join in a global awareness event to raise the disease's profile and contribute to rare disease research.

Fibromuscular dysplasia (FMD) is a noninflammatory, nonatherosclerotic arterial disease that is most commonly seen in women. It may present at any age, but is more commonly discovered when the patient is between the ages of 20 and 60 years old. Patients may be asymptomatic and remain undiagnosed; however, the disease may cause arterial stenosis, occlusion, aneurysm, and/or dissection. FMD most commonly impacts the renal and carotid arteries, though it has been identified in almost every arterial bed. FMD is considered a rare disease. In the U.S., a disease is defined as rare if it is believed to affect fewer than 200,000 Americans, according to the National Organization of Rare Disorders. A disease or disorder is defined as rare …

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…