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Showing posts from 2011

What Are You Doing New Year's?

As far as years go, this one's not been so bad. I managed to see no more than two emergency rooms and seven hospitals—and I didn't die. A good year indeed!

The first two hospitals came on the same day, as on Easter morning I suffered a gastric rupture. I was traveling with my mother for a story I was working on. The night prior my husband and I had a campfire in the backyard. As we'd gone to bed, I noticed my stomach hurt a bit, figured it was gas, took some Mylanta, and went to bed. Through Saturday I was just fine, but that night my mother and I had a large dinner out. Again that evening, I though the tweaks in my abdomen were nothing serious, took a chewable gas tablet, and went to bed. 
I woke up at 3 a.m. in pain and in a panic. I awoke my mom with the super flat, no nonsense tone our family reserves for only true emergencies, "Mom, I need you to wake up right now." As I paced in the hotel room, flapping my hands to shake off the increasing stabbing and bur…

Terrible Twos-day: YouTube Edition

In bringing back Terrible Twos-day, it seemed appropriate to inject a bit of humor into the post-holiday lull as we wait for the new year to come about. That said, TANS turned to YouTube for inspiration, which of course means a cute cat video and other randomness that comes in twos. Enjoy!

The Two Talking Cats The Napper's three cats are talkers, but usually don't talk to one another. 
Rob Base and DJ E Z Rock - It Takes Two
Oh, 1988... get down with your bad self. 
Between Two Ferns With Zach Galifianakis
Zach interviews Natalie Portman and her dog, Whiz.
Marcel the Shell With Shoes on, Two His name is Marcel, and he's partially a shell, but he also has shoes and a face, and lots of other great qualities as well.

Joke of the Day: Two Atoms
Two atoms are walking down a road...
Shagged By a Rare Parrot - BBC Two
Stephen Fry and zoologist Mark Carwardine head to the ends of the earth in search of animals on the edge of extinction... and Carwardine gets more than he bargained for…

The Healing Hound

I'm sick. It seems to be nothing more than a run-of-the-mill Christmas cold; nonetheless, when I made it home yesterday afternoon, it was all I could do to strip down and crawl directly into bed. I slept until my husband got home from work and awoke only enough to request medication. Since I'm not allowed to take pseudoephedrine or ibuprofen—which puts most cold medicines off limits—there was nothing in the house to suit the situation. The hubs went out to procure both drugs and dinner, returned home to dope me up and dine, and really that's the last that I remember until about 5 a.m. As I rolled out of bed, my foot landed on something soft, warm, and hairy. Our hound dog, Bruce, who normally sleeps on his fluffy bed in the living room, had curled into a tiny ball on the floor by my side of the bed.

I didn’t mean to adopt a hound—at least not a barrel-chested, stick-legged, long-eared, musk-smelling hound. They told us he was a Norwegian Elkhound and Golden Lab mix. Golde…

AfternoonNapper's Fibromuscular Dysplasia

Just before Thanksgiving, I had the opportunity to speak to the state's only brain aneurysm support group, which is sponsored by the Joe Niekro Foundation and Duke Raleigh Hospital. Natalie Niekro founded the Joe Niekro Foundation in 2007 in honor her father who lost his life from a sudden cerebral brain aneurysm on October 27, 2006. Many remember Joe as a major league knuckleballer who the Cubs (my team) drafted in 1966 and who achieve his greatest fame with the Houston Astros. The foundation is based in Scottsdale, AZ; however, there are foundation affiliates across the country.

Speaking to the aneurysm support group was important to me because I have four aneurysms of my own. It was just about this time in 2009 that three of the four aneurysms were treated via a process known as coiling. Not all aneurysms are eligible for coiling. I was lucky. I was out of the hospital about 36 hours after I had arrived. All I needed was a little Vicodin for my headache, and otherwise, I was to…

The Advocate As Caregiver

What beats you down? What breaks you? When that happens, where do you go? I've spent the past week living a bit more internally. I needed to step back. I needed a little perspective.

There are so many voices in this chorus of healthcare advocates that I worry if some singers even notice when others are too overwhelmed to continue carry the tune within their hearts and go silent. In the worst case scenario, a tired voice drops out and walks off stage, closes the curtains behind him or herself, and exits the building. No one stops to notice. No one says, "We need you." Some members of the chorus may even go so far as to think the tired singer was of no use, that the singer's voice was of a lesser quality, that the singer did not add value to the chorus, and therefore the singer will not be missed. Broken, the tired voice decides leaves singing behind altogether. The chorus is diminished both by the singer's absence and the absence of the singer's supporters. As…

Engage With Grace

I have great respect for what Engage with Grace is working to accomplish with The One Slide Project. The concept is simple. Download this one image, share it whenever possible, and begin a dialogue. Connect with Engage with Grace on the organization's website, on Faceook, and on Twitter.


Seeking a Second Chance in Paris

My family and friends would be the first to say that they are nervous when traveling with me. I have a habit of becoming ill—sometimes quite so—while on the road. I've been hauled to multiple cities' urgent care centers for everything from a staph infection to a urinary tract infection, carted out of a hotel on a stretcher after hours of violent, bile-producing vomiting due to food poisoning, and stuck in a hotel because I was too sick to leave. In England, exhaustion blanked out nearly two full days in Bath. In St. Gallen, Switzerland, I followed a doctor I met at a gas station to his practice so he could prescribe something for my raging flu.

My worst episode occurred in France. It was the summer after my freshman year at college, and my parents had planned a family trip. In retrospect, I should have done a better job of staying hydrated and well-dosed with vitamin C on the flight. By the time we got to Paris, I already was getting sick. The night my parents went out to see…

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 sum…

Reading Robert Frost on Thanksgiving

After Apple Picking

My long two-pointed ladder's sticking through a tree
Toward heaven still,
And there's a barrel that I didn't fill
Beside it, and there may be two or three
Apples I didn't pick upon some bough.
But I am done with apple-picking now.
Essence of winter sleep is on the night,
The scent of apples: I am drowsing off.
I cannot rub the strangeness from my sight
I got from looking through a pane of glass
I skimmed this morning from the drinking trough
And held against the world of hoary grass.
It melted, and I let it fall and break.
But I was well

Upon my way to sleep before it fell,
And I could tell
What form my dreaming was about to take.
Magnified apples appear and disappear,
Stem end and blossom end,
And every fleck of russet showing dear.
My instep arch not only keeps the ache,
It keeps the pressure of a ladder-round.
I feel the ladder sway as the boughs bend.
And I keep hearing from the cellar bin
The rumbling sound
Of load on load of apples coming in.

Raising FMD Awareness In Style

Today I had the great pleasure of unveiling the new logo for the global peer-to-peer support group for fibromuscular dysplasia patients, FMD Chat. The indelible image brings together the symbolism of FMD's primary form — the ubiquitous string of beads — with the vascular system's complex web of arteries connecting heart and hand, which is seen as both giving and receiving, and represents the caring community created by FMD Chat's participants.

Our designer is none other than my dear friend Margaret Hester. Margaret is a graphic designer and photographer with a warm and fun personality. She knows how much FMD Chat means to me — I am fortunate to be a co-founder along with my cohort, Kari Ulrich, who has inspired me with her tireless dedication to patient advocacy. When I asked Margaret to design a logo for us, I was pleased when she sought to better understand fibromuscular dysplasia so as to best portray its characteristics. FMD is a rare disease, though recent studies in…

Waesuck Wednesday: Occupy Healthcare Edition

When the NYPD army surrounded Zucotti Park at 1:30 a.m. on Tuesday morning, I was awake. I'm not even sure who the tweet came from that announced the raid. There was a link to a live feed. I clicked it, and for the next two hours my attention was rapt. Frankly, I haven't much followed the Occupy Wall Street movement. There's been too much disconnect, and I agree with many of the critics who have said that a message with a million tiny points is too diluted to be effective in begetting change. Change is good. But the answer to "what do you want to change" can not be "everything." Also, I fail to see how sleeping in a park is going to prompt the bankers who line their wallets with ill-gotten gains to give up any of their greed—the homeless have been doing it for decades (without tents and libraries and food carts and smart phones, I might add) and nothing has come of that, not even a solution to homelessness much less corporate overhaul. That said, I do …

Wanna Get Lucky?

It is very strange to me when someone uses the word "survivor" to describe me. I have never considered myself as such. Instead I say to myself, "Nope, this isn't it" and afterwards, "Well, I'm not dead yet." Experiencing life-threatening medical illnesses and events and making it through them is just what I do. I'm stubborn that way. I'm lucky that way.

In 2009, doctors discovered I had four brain aneurysms. (How this discovery came about is a long story for another time.) Three of the four aneurysms were repaired via coiling, a fascinating process in which tiny platinum coils are run through the vascular system into an aneurysm and deployed to create a basket type structure. The procedure means only a day or so in the hospital vs. clipping via a craniotomy, which requires a much longer stay but is the most common aneurysm treatment. Only three of my four aneurysms were treated via coiling because the fourth—at less than 1 mm—is considere…

Caring for Caregivers

Stacy Schaplow was 27 when she got married on Sept. 18, 2010. She was happy and healthy other than a strange soreness in her neck that she wrote off as stress; after all, she was in a dental hygiene program and studying for her state board exams while planning her wedding to financé John. The day of the wedding she took a few ibuprofen for the pain and walked down the aisle in a stunning white dress and carrying a bouquet of white roses and green orchids with eight bridesmaids in funky plum purple dresses and peep toe pumps by her side. The two exchanged vows in an outdoor ceremony, cut their four-tiered cake together, and a few days later left for their honeymoon in Maui
It was on the sixth day of the trip while on their way to go wake boarding that Stacy had a stroke. She was rushed to the hospital via ambulance. The doctors told John that Stacy's vertebral artery dissected, causing a blood clot. Stacy was within the three-hour window of time in which doctors could administer…

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…

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 topic…

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 …

To Flow As Water Does

We are all going to die. Let me repeat that. We are all going to die. So get over it. Or at least do the best you can to get over it because you can't stop it from happening.

The problem is that as a culture we have grown to associate death with an end, with a loss, with grief, with pain. How would our relationship with death change if we could realign our perspective so that death is viewed simply a transition? Death is what is supposed to happen. It is natural. It is—depending on one's spiritual views—just another life event. If we talked about death more, would we be so scared of it?
There is a practice in psychology that involves addressing trauma by talking about it and by allowing the very feelings that one tries so hard to block out to be fully experienced. At first, the very idea of undergoing this process is terrifying and causes anxiety in a patient. A patient typically has spent great amounts of effort avoiding everything related to the trauma—sights, smells, sound…

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 …

Rethink Your ROI—Addendum

After Chris Boyer read my blog post, he felt that I had mis-characterized his tweets to prove a point. He posted a comment to say exactly that (see below) and tweeted it. Never one to let sleeping dogs lie, I tweeted back that I took exception to use of the word mis-characterization as it implies intent—and frankly, I'm not stupid enough try to slander or prove wrong the Director of Digital Marketing & Communications for Inova Health System and a member of the Mayo Clinic Social Media Advisory Board. I am but a wee blogger and ePatient. My network and scope of influence is, to steal a term, 1G. Boyer's is 5G+. Boyer presented at the social media conference at the Mayo Clinic (#mayoragan) today about the exact topic that came under discussion during the aforementioned #hcsm chat—ROI. Apparently, the packed house ate it up, loved it, downloaded it, quoted it, and in the end, sang along to it because Boyer did a little ditty on the ukulele. I didn't get to see or hear an…