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.

RLS

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restless legs syndrome

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just leave me alone

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meds 20 mgs strong

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not always enough

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i bang with my fist

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confusing the nerves

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beating the culprit

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who won't let me sleep

This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: write a health haiku. 

Predator vs. Prey

There is a saying among empowered patients: "I may have _____, but _____ doesn't have me." It is our attitude that defines this relationship. Are we the predator, seizing our health in mighty talons? Or are we the prey, cowering in fear of disease's grasp? 

At any given time we may be either. At any given time we may be both. Our vulnerability as patients can change without a moment's notice. There are those who are given tools to fight — financial stability, support from family and friends, positive attitudes, health literacy, medical technology, caring and competent doctors, access to needed services. There are those who are less well equipped. 

We try our best to plan. Yet, health is fickle. Situations change. We may lose or we may gain. Vulnerability rises and falls like wind currents against which we fight or upon which we soar. 

This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: Go to flickr.com/explore and write a post inspired by the image... connect it to your health focus if possible. 

Why I Write... About Health

I write because writing is the most efficient and effective way to reach into my soul, grab the slimy bits, pull them out, and put them on display. Why I want to put them on display is another question altogether. I need to. I must. If I don't, they fester and rot such that great sadness consumes me. At times, I am lucky—what I pull out from my soul is a rough nugget of glimmering joy or a jagged ember of passion. Yet these too must be extricated and catalogued lest they take up too much room in an already full heart. By writing, by sharing, I form tiny exhibits in a personal museum. The only admission charge for others is time and the willingness to read. For myself, the cost is much greater, but perhaps so is the reward, as it is so hard to ascertain what benefit my museum of words brings to others.

Recently, I was told that I helped motivate someone to become an organ donor. One organ donor can save up to eight lives. That person's decision is real. The benefit is real. With myself as an organ donor too, that means that as many as sixteen lives may be saved. What a profound ability to be able to give the gift of life. Giving a sense of hope, of solace, of reprieve, of comfort is why I write about health. I write about my own health because I am nobody. In being nobody, I am everybody. If I have survived, carried on, pushed through, and moved forward, then so can everybody—and that everybody includes you. 

This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: I write about my health because...

Faster Than A Speeding Bullet

I once asked my mother what job she would do if she could do any job in the world.

"Be a concierge," she said.

I blinked a few times.

"A concierge? Like in a hotel?" I asked.

"Yes."

"Why in the world would you want to be a concierge?"

"Because I would like to be able to make things happen for people," Mom said.

I couldn't help but smile; what Mom called a concierge I envisioned more as a cross between a fairy godmother and a mob boss. Her desire was to make sure that deserving people had what they needed and wanted, to be able to pull out all the stops, to be able to quickly, quietly, and efficiently meet and exceed expectations.

Imagine we could all do that — every day and in everything we do. That would be a truly super power.


This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: Superpower Day - if you had a superpower, what would it be and how would you use it?

The Itty Bitty Pity Party

"I just had grits for dinner and my coffee pot has broken, 

how do you think I feel?" - T.B.

Sometimes we lose. Nothing goes right. Life fails to cooperate, or, even worse, seems to conspire against us. It is then, when we are frustrated and dejected, that we must allow ourselves an itty bitty pity party. 

I am a firm believer that one's attitude directly corresponds to one's health. The more sullen and bitter one becomes in the face of adversity, the more negative impacts will result. Pragmatic optimism partnered with the determination to always celebrate the small victories and continue looking forward enables one to survive, recover, and carry on. This philosophy of mine has been noted by more than one healthcare provider—often comments about my positive attitude are accompanied by slightly furrowed brows and cocked heads, as if the speaker can't quite understand why, in light of my medical history, I am not angry and dejected. 

The fact of the matter is that of course I feel saddness and dejection! I would not be human if I did not feel these things, or at least I would not be a healthy human. My advocacy for positivity does not come at the expense of negativity. In order to experience the joys in life, we must also allow ourselves to feel the sorrows. Blocking out emotions of any kind limits the overall spectrum we are able to experience. 

When life grows to be too much, when frustration mounts, and the dejection sets in, feel it. Wrap your arms around it. Permit yourself to grieve, to punch pillows, to eat ice cream, to do whatever it is that allows you to both experience the emotion and release it—but do it for a set amount of time; I recommend no more than an hour. This period becomes the itty bitty pity party, and since it's your party, you can cry if you want to. 

Then... get up, get out, move on, carry forward—not for anyone else's benefit, for your own. You are strong enough, and in your own way, you will overcome.

This blog post is part of WEGO Health's Health Activists Writer's Month Challenge (#HAWMC). Prompt: Quotation Inspiration - find a quote that inspires you (either positively or negatively).

Digging in the Dirt

The seed catalogs have been arriving in the mail. I tend to collect them, take them to bed with me, and peer at images of heirloom varieties and newly cultivated hybrids in the soft light of the bedside lamp that inspires garden dreams. It’s been my habit of stashing the catalogs under the bed that has earned them a moniker given in jest yet holding much truth—plant porn. The pictures are all so tantalizing … great round tomatoes, sturdy zucchini, curvaceous eggplant. I want to order more plant varieties than I could ever hope to grow in my two small garden plots, and unless my husband allows me to take over even more of the yard or I get the hang of vertical and container-based gardening, I’m at my square footage max. Last year, I failed to show much restraint after winning a decorative planter full of seed packs at a fundraiser for the local community college’s wildlife program. Overwhelmed with choices, I set up my miniature greenhouses on the washer and dryer by the windows of the daylight basement and lorded over more than 200 little crannies of dirt each with two to three seeds buried inside. The oil furnace kept things nice and warm, I misted just enough to maintain dewy drops of condensation, and on cloudy days I switched on a single grow light to keep the germination process moving along.

And germinate those seeds did, and I—too soft-hearted to cull the weaklings—coddled them all, divided their tiny root systems using bamboo skewers, and, as they grew, moved them into individual larger pots. Again, I point out the fact that I live not on a farm, but within city limits. There were plants in the basement, plants on the sun porch, plants in the driveway. The tomatoes were the most aggressive and prolific. I sent my husband to work with twenty of them, each labeled with its heirloom variety. I put ten or so out on the sidewalk in front of our house with a sign that said “free.” I took some to friends in South Carolina. I forced some on friends who came by to drop off fresh figs. Still, I had a dozen tomato plants in the ground to tend, plus the peppers, squash, zucchini, chard, lettuce, and basil, the directly sown potatoes, radishes, cucumbers, red and yellow onions, the volunteer dill, cilantro, and butternut squash, plus the unwieldy Rumbo squash that roamed across the backyard fence, its tendrils clinging and climbing their way up and over anything in its path. Never mind the attention needed to keep the rest of the landscape vaguely in check—iris, roses, lavender, sage, rosemary, daylilies, crepe myrtle, sedum, gangly butterfly bushes, clematis, azaleas, hydrangea, hosta, ferns, and various other whatnots.

My only growing salvation—last year and at any time—is that I am a low-fuss gardener. I do not fertilize. What cannot be accomplished with rich soil, a layer of mulch, adequate light, good watering, a bit of pruning or pinching, and, at most, a sprinkle of BT is not done. Though I baby my seedlings, a dying plant will be judiciously sacrificed to preserve the health of the rest. I can—and if determined, will—grow another.

Gardening is both my exercise and mental therapy of choice. When I am in the garden, nothing else exists. There are no deadlines, no bills to pay, no telephones or emails. It's just me conversing with the dirt, the bugs, the weeds, the roots, the leaves, the sun, the breeze. I never wear gloves. I can't stand to—I want to be able to directly feel what I touch; doing so keeps me mindful. I refuse to grow too old to play in the water from the garden hose, which my hound, Bruce, greatly enjoys. Any day that it's nice outside and I am lucky enough to be unencumbered and at home, my husband—dogged by a desk job—encourages me, "You should go dig." It never ceases to amaze me what solace I unearth.