Terrible Twos-day: Interactions Edition

I spent part of this evening sitting in on a TwitterChat with a few doctors discussing alternative therapies and how patients choose to integrate them with "traditional" medicine. It was a good talk, and perhaps the biggest lesson taken away is this—TELL YOUR DOCTORS EVERYTHING YOU TAKE AND ALL ALTERNATIVE THERAPIES YOU ARE USING. Tell them not because they are nosy or think you're a bad patient or want to tell you to stop taking what you're taking or doing what you're doing but because they do indeed have medical degrees and may very well be more abreast of potential interactions than you.

How many patients really read and memorize those little leaflets the pharmacy hands out? (Yes, I know you did read that one, once, you swear...) Those leaflets have good information in them, but the print is tiny and we're busy. Maybe you read the leaflet the very first time you got the prescription. Maybe you had some time to kill over a bowl of cereal and the newspaper was in another room and so you read the leaflet. Did you understand every word in the leaflet? Did you make notes regarding things to ask your doctor about next time you meet? Did you see a caution not to take your medicine at certain times and with certain foods or supplements and make a concerted effort to make sure you were doing everything right? Probably not.

That's okay—sort of. As patients we should all take greater responsibility for our own healthcare and be more involved. Doctors can do wonderful things, but they're still human. They're not psychic. They need information from you. You need to be able to tell them about things that impact your healthcare—supplements and alternative therapies included, heck, supplements and alternative therapies especially included. Such things aren't prescribed and therefore often are not in the record system. Take St. John's Wort because you feel a bit down and are too embarrassed to talk to your doctor about it? Don't be. Your doctor needs to know. Have severe back pain that responds to massage? Your doctor needs to know, and at home exercises to limber up are cheaper than pills. Want to know more about Vitamins B and D? Ask your doctor not just about what they do but about how taking them would work with your other meds.

Doctors are tasked with moving through a full-roster of patients each day. With an aging population and people who refuse to do their part in taking care of their own bodies, doctors have an ever increasing load. Help them help you. Be prepared for your appointments. Communicate as clearly as possible. And if you're not getting the attention and answers you need, don't be afraid to say the following—Doctor, this is an important issue to me, and I would appreciate it if you would help me address my concerns; I am really depending on your help to figure out what's right for me.

And finally—make sure that when you're doing online research that rely on credible information. Jo-Jo's House of Medicine or Herbal Solutions "Backwards R" Us probably aren't the best place to go. That said, help educate yourself with the information contained in these links.

National Center for Complementary and Alternative Medicine
The National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government's lead agency for scientific research on complementary and alternative medicine (CAM). The mission of NCCAM is to define, through rigorous scientific investigation, the usefulness and safety of complementary and alternative medicine interventions and their roles in improving health and health care.

The University of Texas MD Anderson Cancer Center
The MD Anderson Cancer Center Complementary/Integrative Medicine Education Resources (CIMER) Web site is dedicated to providing educational resources to health care professionals and patients regarding the current understanding of complementary medicine and, where appropriate, to assist in the integration of these medicines and therapies with conventional treatments.

Minneapolis May Not Want Me But Stanford Does

There is a part of me that feels like a schmuck. I made great motions about trying to win a scholarship to the Mayo Clinic's Social Media Summit, asking for votes via several Facebook pages, via Twitter, and with a column in our local paper. And then I didn't win.

But while I was waiting to hear from Mayo, I was encouraged to apply for scholarship to a similar summit on the Stanford Medical campus—and I won that... without any public votes or the like. I applied, they selected me, I am going.

It's an odd little predicament to no win something cool only to win something cool. The truth of the matter is that I applied for Mayo and got such a tremendous outpouring of support from the public that I didn't hesitate to apply for the Stanford summit. Their votes were vote for me regardless, and it did my soul a world of good. The process also allowed me to make a serious dent in my bucket list item of spreading awareness of fibromuscular dysplasia.

Stanford's Medicine 2.0 Summit is coming up quickly—I'll be flying out on Sept. 15. The summit runs Sept. 16-18. I'll be back after a redeye flight on Sept. 20. My husband is coming with, not to attend the summit, but to babysit me on my cross country journey and to commune with the Pacific. I am hopeful that I will be able to make contacts who will be useful and interesting interview subjects when it comes to writing my book regarding patients' involvement in their own healthcare, which I have promised myself to begin working on in earnest come January.

Meanwhile, I'm planning my time at the summit. It is a true geek fest, which I think is wonderful, and organizers have done a great job of scheduling each day so that there's just about always something interesting going on. Here's what the trip is looking like for me (italics indicate things are expected to be personal highlights):

Sept. 15
Flight departs at 725, arrives at 1213

Get to Stanford...

Hit the hotel pool, walk about campus, go to Gordon Biersch Brewing Company

Sept. 16
Breakfast - 730-840

Welcome with Larry Chu, MD, MS, Ex. Dir. of Stanford Summit - 830-840

Opening Keynote with Abraham Verghese, MD and author - 840-910

The Networked Patient, Communities of Practice & Participatory Medicine - 920-1028

Break - 1028-1050 (really... 1028?)

Healthcare Transformers, Persuasion, Socially Networked Hospitals, Personalized Healthcare, and the Arts of Medicine 2.0 - 1050-1215

Lunch Box - 1215-1230

Knowledge Revolution, Inventions in Medical Education for Tomorrow's Learners - 1230-115

Break - 115-141

The Interconnected Life, Social Technologies and the Future - 141-250 (includes a panel member from Google!)

Break - 250-320

The New Scientist, Facebook for Scientists, Culture of Science on the Internet, and the Science of Sharing - 320-445

Break - 445-515

Closing - 515-600

Dinner out at Tamarine and checking out University Ave - 630 - ....

Sept. 17
Travel recovery time and breakfast with the hubby (Joanie's Cafe) while the docs are all opening keynote listening.

Combining Social Media with Virtual Coaching to Prevent and Overcome Loneliness and Break Sedentary Lifestyles in Elders - 1145-1230

Lunch - 1230-1253

What Lies Around the Bend? Exploring Next Steps in Social Media and Primary Care - 1253-108

The "Meaningful Use" of Social Media by Physicians - 130-230

The Challenges of Becoming Virtual: The Experience of a Rehabilitation Community of Practice on Stroke Care - AND - The Goody-Gaga Effect: Health Communication at the Nexus of Social
Media & Popular Culture - 230-315 (can I be two places at once?)

Perhaps go zen for awhile - 315-430

Online Patient Education for Teenagers: Disease Self-Management and Medical Decision Support - AND - What is the Role of Online Support for the Supporters - AND - Making Home the Heart of Health, Today's tools & techniques - 430-600

Cocktail Reception and Social Mixer - 600-700

Dinner at Pennisula Fountain & Grill and an early bedtime - 730 - ....

Sept. 18
Breakfast - 800-900

Persuasive Technology with BJ Fogg - 900-955

Break - 955-1030

Using Social network Analysis to Understand Web 2.0 Communications - 1030-1115

Communicating the Experience of Illness through Patient Blogs - 1115-1200

Lunch - 1200-1241

A Visual Screening Instrument: Assessment for Common Mental Disorders and Suicide Ideation - 1241-1256

Taking Personal Health Records to a New Level, Establishing a Platform for Allowing for Consumer Control of Interoperable Health Care Information - AND - The Power of Text-messaging Technology to Increase Patient Compliance with Medication and Adherence to Physician Recommendations and Educational Interventions in Free Clinics - AND - Impact of Texting and Predictive Potential of Health Literacy on Medication Adherence - 100-230

Break - 230-300

Quantified Self and the Self-Tracking Patient - 300-345

Self Tracking Live Demos - AND - Physicians' reasons for professional Internet Use and the Impact on Attitudes toward Internet-informed Patients and Prescribing Behavior - 345-430

Venture to Half Moon Bay for sightseeing, beach, and dinner at Princeton Seafood Co. - 530 - ...

Sept. 19
Sleep in a bit and find some breakfast

Check out

Head in the direction of San Fran to Fisherman's Wharf - San Francisco Carousel, Pier Market Seafood Restaurant, Adventure Cat Bay Tour

Go hang out at the airport!

Flight departs at 1130 (p.m.)

Sept. 20
Flight arrives 10:30 (a.m.)

SLEEP!

Waesuck Wednesday: Deadline Edition

In short — I found out today that the deadline to send the magazine to press is not a week away; it is two days away. How do I—the editor—miss such a relevant piece of information? There was a failure to communicate, which is particularly ironic given that we are in the business of communicating, so instead of blogging, I must go write the things for which I am paid.

Deadline: Post-It Stop Action Animation
The most awesome Post-It-based procrastination sequence ever.

Deadline and DC Comics
The man who became the master assassin called Deadline started of as a small time hitman for one of America's organized crime families.

Terrible Twos-day: Earthquake Edition

A 5.8 magnitude rattled the majority of the East Coast today. I missed it—it was the afternoon and I was napping. The quake originated near Richmond and was the biggest to hit the area since 1897.

I was in Switzerland when I experienced my first quake. The guy I was dating at the time lived there, and my 19-year-old heart ventured across the ocean to the land of chocolate for the Christmas holiday. Beginning the day I arrived, it snowed for nearly four days straight. Subsequent conditions were wonderful for learning how to snowboard—it doesn't hurt to fall in four feet of powder.

So much snow was amazing, but it also made me a bit nervous. The Alps seemed like a good place for an avalanche. Suffocating in a pile of snow seemed like a miserable way to die. I had forgotten my gloves one afternoon as we loaded up the car to head out to the slopes and was alone inside the small apartment building's hallway when the walls began to shake. There was nothing I could do but stand still and wait. If an avalanche was coming down the mountain, being inside the building was my safest option. After 30 seconds or so, the shaking stopped. I waited for any sort of noise or movement. There was nothing. I grabbed my gloves, peeked out the front door to see the waiting car, shrugged my shoulders, and stepped outside. As I crammed into the Subaru's backseat the four other occupants all turned to look at me with suspicion. "We you shaking the car?" my boyfriend asked. "Not unless you were shaking the house," I replied. The earthquake's epicenter was about 20 miles away, and no damage was reported.

The Switzerland experience prepared me for another tremor in 2005 in Western North Carolina. I was on the phone with my then-boyfriend/now-husband when a loud and low sound permeated my townhouse and the shaking began. "Whoa... do you feel that?" I asked. "Feel what? Oh!" came his reply as the quake traveled the 10 miles or so between our two homes.

I remember learning in grade school that our mountains are on a major faultline and that the area was quake territory; however, I don't recall a single quake throughout elementary, middle and high school. It's only been since I've lived here as an adult that the quake activity has been great enough to notice. And notice I have. What does it mean? Why are the faults shifting? Do I really want to know? Since the Virginia quake at 1:51 p.m. the USGS has registered seven additional quakes around the world—including a 4.2 aftershock and a 5.2 in Papa New Guinea. Colorado also had a shaky day with a 5.3 at 5:46 a.m. followed by seven aftershocks so far. Maybe it's time to review our insurance policy.

Latest Earthquakes in the World
Learn about all earthquakes with magnitude greater than 2.5 located by the USGS in real-time.

Awesome Earthquake Statistics
Investigate historic quakes, deadly quakes, earthquakes by state and more.

Waesuck Wednesday: Dressing Room Edition

There comes a confluence of intense privacy with overt friendliness from strangers in the women's dressing room. It is a place of harsh lighting and truthful mirrors where wrinkles look deeper, breasts saggier, buttocks bigger. Unflattering garments are pulled overhead in disgust, zippers cursed, and rationalizations made. Alternately, when the fabulous dress is found or the perfect jeans pulled on, the dressing room provides a private little stage for the "I look good and I know it" grin, complete with sparkling eyes, a hand on the hip, and maybe even a little swagger out to show off the closet's soon-t0-be new addition. Women are hard on themselves, and when a flattering fashion victory makes its way out of the dressing room, other women often will offer up a compliment, an acknowledgment of a hard won battle waged behind the dressing room door—assuming that the temporary model is not a skinny b-c-h with perfect hair and teeth and a golden tan. We shoot daggers at the skinny b-c-h from underneath our unplucked eyebrows and ruefully remember the day back in elementary school when we could wear that size too. Skinny b-c-h probably isn't shopping off the clearance rack like we are. We hope skinny b-c-h's shoes pinch her tiny perfect feet.

Today I was in the dressing room of a regional department store clearing house where short squat women like me can find the largest petite's section this side of the state. Dresses, which I used to hate but recently discovered can be extremely comfortable given the right fabric, typically go for around $30 before the extra 40 percent reduction. I've come home with $7 shirts that are now my favorites.

I had just started working through my selection of five shirts when the woman in the dressing room right next to me passed gas. It was a long, rat-a-tat-tat-tat-tat kind of sound. She wasn't trying to let it just sneak out. She knew I was beside her. She didn't cough to cover the noise or say excuse me when it happened. She just carried right on along. I rattled my hangers. Moments later I heard footsteps coming into the dressing room, shoes padding softly on the subdued gray carpet. "Hey Ethel, they've got on of these down in Tampa!" said voice perkily addressing the dressing room behind me—the dressing room containing the woman who had just passed gas. Two arms tangled in shirt sleeves, I cracked up, silently, just letting my laugh sneak out. The department store clearance center is particularly popular with the elderly who shop in cute couples or go there for a little ol' girls outing. Ethel, my dressing room companion, was just one of those little ol' girls. She didn't have a care who heard her pass gas, or at least didn't care that I, someone she didn't know and would never see again, heard her pass gas. And for that, I commend her. Ethel's friend tried on a white dress with a green and blue print, "Hey Ethel, can you stick your head out and look? See? Pockets!" "It looks good," Ethel said.

Dressing Room Dilemma
Each year, an estimated 8 billion unrecyclable plastic hangers and more than 3.5 million wire hangers end up in landfills, enough to fill almost five Empire State Buildings, but Ditto Hangers has designed hangers made from recycled Paper and PET Plastic.

Lessons from Van Halen's Dressing Room
When rock stars go on tour, they are famous for making extreme demands simply because they can. One of the most excessive examples comes from the band Van Halen, with lead singer David Lee Roth. Halfway down page 40 of the 53 page contract, it specified that the band’s dressing rooms must be supplied with M&Ms, but that there must be “ABSOLUTELY NO BROWN ONES!”

Macy's Violates Privacy With Peek-A-Boo Dressing Rooms
News stations in both Orlando and Tampa Bay are reporting that local Macy's stores have been installing dressing room doors upside down so that horizontal slat openings allow outsiders to get a full view inside.

Terrible Twos-day: Dental Edition

Once again Tuesday brings something in twos.

After dinner I felt something weird lodged between my back two molars. I fiddled with it with my tongue for a bit to no avail, so grabbed one of those handy little floss pick things—what came out was part of my tooth! My immediate thought translated loosely to "that's not supposed to happen," and I ran to the bathroom mirror to investigate. A visible chip was missing and a low ache was setting in. I've got a call in to the dentist—"Um, yeah, hi... I've like really chipped my tooth, and I think I should probably have someone look at it really soon. Call me?" Then I called the dental insurance company. The company apparently has never insured anyone of Polish descent and got the last letters of my name wrong, making me a "vslu." Granted we of Eastern European persuasion like consonants, but vslu sounds like some kind of tiny, horned antelope-type creature. I am not an antelope. However, antelope do have teeth.

Fossil Antelope Teeth Hold Clues to Europe's Missing Apes
Wear patterns on ancient antelope teeth have allowed researchers to reconstruct Europe’s environment 8 million years ago, when the continent’s great apes vanished. One of those ape species could have given rise to the human lineage, making the circumstances of their disappearance especially interesting.

Antelope Tooth Necklace
Unlike most single-tooth pendant necklaces, this piece contains five molars from a New Mexican pronghorn antelope naturally fixed in a piece of the original jawbone.

To Love and Let Go

Let me first be blunt. I am going to die. We all will. It is our inescapable fate. Having been diagnosed with an incurable disease makes me no more death's target than anyone else—I simply have been made much more aware of my inherently impermanent nature on this earth. The Buddha says that it is our attachment to things that are impermanent that causes our suffering, that in order to prevent suffering we much accept impermanence and release our attachments to people, to things, to our own lives. Though no Buddhist scholar, I take this lesson not to mean that we should live in heartless isolation but that we should recognize that our time, our relationships are but temporary gifts. We will feel joy and love. We will feel grief and anger. But ultimately we must accept that all living things are transitory, designed to come and to go. Therefore, when living things go, we must not suffer their loss.

Admittedly, I question whether I will be able to uphold this philosophy in practice, but I find that it brings me peace in theory. I turn to it when I become afraid of mine and others' passing. Despite several brushes with death, I have not feared it, perhaps out of stubbornness and the determination that it was unequivocally not my time. My diagnosis has changed that. I do not fear the actual act of dying. I fear change and loss. At age 31, I am the happiest I have ever been, which means that I also have more to lose than ever before. Suddenly I understand why some people, sick or otherwise, choose to push friends and family away. Friends and family remind us of what we will lose when we go or when they go before us. If friends and family are not around, not to be found, not there for support and love, it is so very much easier to cope because one can not lose what is already lost.

Easier is not always better though. It would be infinitely easier not to fight this disease, to wad up in a ball and cry like Chicken Little, to become bitter and fatalistic. Fighting, continuing on, displaying resoluteness takes a great deal of energy—a fact often overlooked by those who look and see a calm and stoic person. My composure is an exercise in self-control. I do not allow myself to fall apart because to do so would accomplish nothing. Being a sniffling, self-pitying mess does not help my doctors, does not help myself, does not help my family and friends, does not cross items off my bucket list, does not make the best use of what time I have left. I will continue to move forward with purpose until the end of my days at which time my hope is that I can look back and say that they were days well spent.

This steadfastness does not make me super-human. I break. There are times when the fear comes, or the tiredness overwhelms, or the frustration mounts, and I break. I am allowed. These emotions are part of my experience here on earth. I will sit with them, and I will feel them, and I will use them to guide me. The goal is to do this and to then pack the broken pieces back up into my heart and carry on, changed, rearranged, but whole.

I Get By With A Little Help From My Friends

Not a lot of words are needed here.

To each and every person who has offered his or her support—thank you. I am honored and touched that so many are "on my team."


"We are formed and molded by our thoughts. Those whose minds are shaped by selfless thoughts give joy when they speak or act. Joy follows them like a shadow that never leaves them." - Buddha

Waesuck Wednesday: Back to School Edition

I have just learned a new word that is too awesome not to share and to which I must dedicate a weekly blog post—waesuck. It's the 50 cent vocabulary word that sounds like slang and will earn you a lot of points in Scrabble. Waesuck is an interjection of Scottish origin, which derives from the words Scot "wae" meaning woe and "sucks," an alteration of sakes, and can be interpreted as cause for woe or an expression of pity. It's pronounced exactly as it looks—way suck—making it an especially useful term in our current times.

Waesuck Wednesday offers up two options—all things Scottish or things that are epic fails. Scotland is nice and all, and right now they're sure glad they aren't England, but epic fails sound much more fun to feature than kilts and haggis. And so without further to do, I bring you Waesuck Wednesday: Back to School Edition.

Textbooks Riddled with Errors
A panel of historians found an "appalling" number of factual errors in a fourth-grade history textbook used in many Virginia school districts. "The textbook was originally reviewed by three grade-school teachers," not by trained academics, department spokesman Charles Pyle said.

I "Like" You - Facebook and Student/Teacher Relationships
"Last month, Missouri passed a law designed to prevent any extracurricular poking between teachers and students. It specifies that teachers “cannot have a nonwork-related website that allows exclusive access with a current or former student,” thus banning teachers and students from being friends on Facebook — and even, depending on how this is interpreted, banning teachers from having Facebook accounts at all."

When Educators Cheat
"State education officials' examination of erasures on answer sheets found suspicious numbers of wrong-to-right corrections on the 2009 CRCT in 58 Atlanta schools, far more than in any other Georgia district."

Terrible Twos-day: Jerry McGuire Edition

My husband and I met on the job in 2003. I was a reporter, he was a graphic designer, the newspaper was a weekly with a Tuesday press day. Tuesday was miserable. Tuesday was the kind of miserable that we—and a majority of the other staffers—began dreading next Tuesday before the current Tuesday had passed. Any Tuesday at work needed no other explanation than it's being Tuesday, and any Tuesday not at work was enjoyed with particular glee. I moved on from being a reporter and escaped Tuesday; my husband has not yet had that luxury and is now on his ninth year of Terrible Tuesdays. It is in his honor that I announce the arrival of Terrible Twos-days. Each Tuesday will bring something in twos, but not threes — because that would be inherently good, and Tuesday is terrible.

Everything is Terrible
"Since the dawn of VHS, we've been chronicling wild packs of Maguires in their native thrift store habitat with our patented Maguirewatches, and during that time, we decided to start a Jerry Maguire sanctuary to preserve these great artifacts."

Show Me the Money - William Shatner meets Top Gun
Alan Pietruszewski competes on the 2006 game show named after Jerry McGuire's catch phrase. He cites 1982's "An Officer and a Gentleman" as the inspiration for him joining the Navy and becoming a real Top Gun.

Tour de Force - Aiming for the Mayo Clinic

Friends,

Blogs, Twitter, Facebook, Google+ ... social networking is an oddly impersonal way of trying to make personal connections, and making that connection is what I'm hoping to do when I say — I need your vote. The Mayo Clinic is holding a summit in October focusing on the role of social media in health care. I desperately want to go and consequently am competing for one of five scholarships that will allow me to do so. The competition is based on a 700-word essay, which is posted and open for "likes" and comments until Aug. 17. The downside is that one must register to be part of the Mayo Clinic's social networking site, which I realize is not of great interest to those who are not wrapped up in their medical care or in caring for someone else. But if nothing else, those who register with the network will have a chance to read about all kinds of freaky diseases and get scared out of their wits that they have them all. It will be awesome. So please, take a few moments and, if you choose, send a vote or comment my way on the Mayo Clinic site. My essay was cobbled together from thoughts that were first published here, so in a way each reader who votes can feel personally vested.

Thanks,

The Afternoon Napper

Blackberries

Blackberries are a rough and tumble lot. Grown from red-clay, sun-bleached embankments on thicketed briars, the fruits reflect their environment’s character. Well-watered they grow fat and luscious, thin skins bursting at just the touch required to pick berry from stem. Grown wild, they are less than half the size but cling to their thorny patches with determined grit. Blackberries find their way into the mouths of animal foragers upon which mastication, digestion, and defecation releases the seeds from which the next blackberries will grow. It is an ugly resiliency that bears bittersweet reward.

My soul belongs to the wild blackberries. Death’s sharp scythe has hacked scars into my body, yet my soul continues to grow and bear fruit. I am the root, the vine, and the thorn. Each day alive is a surprising ripe berry, gritty and exhilarating.