the afternoon nap society

Fibromuscular Dysplasia's Patient Registry Good For Research, But Is It Good For Patients' Quality of Life?

2012-01-30T11:46:00.003-05:00

Fibromusclar dysplasia patients learned that principal investigator, Dr. Jeffrey Olin of Mount Sinai School of Medicine, would be presenting initial findings from the FMD patient registry at the International Symposium on Endovascular Therapy mere hours before his talk. Not that it mattered much. Patients weren't part of the ISET program. We didn't get to hear what Olin said. We—the people in the study—got a news release. Or at least there was a release put out and a few subsequent health news articles, which those who were paying attention shared around the FMD community.

To any FMD patient, the findings were less than surprising. Of the 339 patients studied, 91 percent were female—a fact evidenced by any FMD social community, including the one for which I am a co-founder and moderator called FMD Chat. More than 95 percent of patients suffered one or more of the following symptoms: high blood pressure (66 percent); headaches (53 percent); rhythmic ringing in ears (30 percent); dizziness (28 percent); a whooshing sound in the ear (24 percent); neck pain (22 percent). Again, this list of symptoms and their prevalence offers no new information to patients. Olin reported that the location of FMD affected arteries showed the most common being the renal arteries followed closely by the carotids and that many patients have FMD in multiple locations. We knew this too.

FMD is often found by accident after a stroke or transient ischemic attack, Olin said. Yes, we know. It should be looked for in young patients with high blood pressure or migraine-type headaches. Yes, we know. FMD can be diagnosed with angiography, CTA, or MRA. Yes, we know. Angioplasty can be used to open up affected arteries if done early enough. Yes, we know. Blood thinners and antiplatelet drugs may be prescribed. Yes, we know. FMD can lead to a tear in the artery or permanent kidney damage. Yes, we know. It is unclear what causes FMD. Yes, we know. FMD is an underdiagnosed disease. Yes, we know.

Granted, rare disease patients tend to be extremely well-informed about their disease. We have to be. The very nature of a rare disease is that it is rarely seen, so patients often know more than the healthcare providers treating them. This is particularly true for patients living in rural communities without access to teaching hospitals. Patients become the teachers—assuming that the healthcare providers are willing to listen.

What we don't know is why a registry, which began in 2008 and costs nearly $50,000 a year paid to the University of Michigan to maintain, has yielded information that does not correlate with what patients really want to know. Among FMD Chat group participants, questions are never about what percent of patients exhibit a particular symptom. The questions overwhelmingly begin with "why." Why did my artery dissect? Why do we dissect when we do? Why the headaches and neck pain? Why orthostatic hypotension post FMD-related carotid dissection? Will dissections continue to happen? Is one born with FMD or does it develop over time? Will FMD progressively develop in additional arteries after first being diagnosed? Is it a connective tissue disease? Having been previously healthy and then diagnosed with FMD, why do other health problems occur? How many people die as a result of FMD and at what age?

What we don't know is why FMD patients tell story after story about traveling great distances across the country to see doctors identified as FMD specialists to leave with no plan of action, no sense of treatment, and an overwhelming sense of frustration. Diagnostic angiograms, CTs, and MRAs come back "unchanged" or even "normal" though will little explanation as to whether normal is normal or normal is the new normal for that patient. Stents may be placed, but there is no promise of their effectiveness. Angioplasty may be performed... and required again and again. Some cases have resulted in bypasses, yet there is little to no data on whether the bypasses will remain patent. More often than not, patients report physician visits as exactly that—a visit—having been sent home with no new information and no hope. It is no way to live.

These issues do not bode well for a much exclaimed conjecture from Olin's report: FMD may affect 4 percent of the U.S. population. Four percent of the U.S. population is approximately 9 million people. FMD is currently classified as a rare disease. With the U.S. a rare disease is one that impacts less than 200,000 people. Projecting that FMD affects 45 times as many people in the U.S. not only means that FMD would lose its rare disease classification; it means that 9 million people will have the same questions as the current group of frustrated and terrified FMD patients.

Problems with this 9 million figure are two-fold. First, no reports generated from ISET explain what methodology Olin used to derive this 9 million figure. How does a study of 339 patients translate to the potential of 9 million patients in the U.S., much less world-wide? Secondly, how will losing rare disease status affect allocations for future research funding? Even the non-healthcare provider and non-researcher would be safe to say that there's more funding to be found for researching more common diseases. From an outsider perspective, it seems rather at odds that the researcher who stands to gain funding for his work chairs the advisory board of the Fibromuscular Dysplasia Society of America, which funds the registry. "Dr. Olin and his associates from the registry hypothesize that patients who develop FMD have an as-yet unidentified genetic predisposition that interacts with an environmental trigger," reports Mitchel Zoler in Family Practice News. "His hope is that, by continuing to expand the registry and by receiving substantially more research support than FMD now gets, a more concerted research effort can address the genetic questions raised by the family-history findings."

Researching FMD is important—at least to those of us who have it, to our family members current and future, and to those who may one day be diagnosed. However, the most immediate need it to improve FMD patients' quality of life. More must be done across the related specialities to address the issues that many FMD patients struggle with on a day-to-day basis including crippling fatigue and pain, the inability to work and lost income, depression and anxiety, isolation and fear. These issues are imminent threats to patients' overall health, and without a concerted effort to holistically treat patients there may well be fewer patients willing and able to participate in research studies.

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This blog post is part of the RARE Project's blog hop to raise awareness of World Rare Disease Day, held on Feb. 29, and is part of a collaboration among the RARE Project, The Afternoon Nap Society and Grand Rounds. To read Grand Rounds selected posts, some of which also address rare disease, click here.

• An estimated 350 million people are affected by rare disease worldwide.

• One in 10 Americans is affected by rare disease, which is more than 30 million people and more than the total number of people living with cancer worldwide.

• There are more than 7,000 rare diseases with some affecting less than 100 people.

• Almost 80 percent of rare diseases are genetic in origin.

• These rare conditions are chronic, life threatening and fatal. There are no cures for any rare
disease, and only 5 percent of the diseases have any type of treatment.

• Thirty percent of children with RARE disease will die by their fifth birthday.

• More than 50 percent of rare diseases have no foundations, advocacy group or community support.

Being Better to My Body: Day 1

2012-01-25T01:02:00.000-05:00

I went to the grocery store yesterday. I spent $114.08 (but saved $32.55 thanks to in-store discounts). My list reads as such:

Kellogg's Raisin Bran $1.93
Kellogg's Raisin Bran $1.93
Quaker Oatmeal Squares $3.00
Quaker Oatmeal Squares $2.42
Mount Olive Garlic Dill Pickles $1.44
Mount Olive Polish Dill Pickles $1.44
Arnold Healthful Nutty Grain Bread $2.98
Laura Lynn Splenda Knock Off $2.48
Extra Apple Pie Gum $1.08
Bass Ale $11.97 (for the hubs)
Daisy Light Sour Cream $1.38
Smart Balance Spread $1.88
Smart Balance Spread $1.88
Skim Milk $2.73
Weight Watchers String Cheese $4.18
Yoplait Light $.75
Yoplait Light $.75
Yoplait Light $.75
Yoplait Light $.75
Purina Dog Chow $12.48
Air Freshener $2.88
Air Freshener $2.88
Frozen Chopped Spinach $2.50
Frozen Chopped Spinach $2.50
Morning Star Black Bean Burgers $2.98
Morning Star Garden Veggie Burgers $2.98
Clementines $6.98 (splurge!)
Berry Boost juice $2.50
Green Goodness juice $2.50
Smart Sausage Italian Style $3.00
Smart Sausage Chorizo Style $3.00
Tamari Almonds $3.62
Blueberries $2.50
Blueberries $2.50
Mushrooms $1.98
Edamame Beans $.85
Eggplant $1.55
Organic Baby Carrots $1.98

For good measure, let's take the beer, dog food, and air fresheners out of the equation, which lowers the bill by $30.21 for a total of $83.87.

Am I worth $83.87?

This question gives me pause. My immediate response is, "Depends on how long that $83.87 lasts." The amount represents 10 percent of my bi-weekly take home. Let's assume that I'm a creative cook with a few things already in my cabinet. Let's assume that I will have to make at least one similar trip to the grocery store and one more at half the cost. At an estimated cost of $210 for the month, groceries will have taken up 13 percent of my take home pay. I spend 24 percent of my take home pay on my half of the mortgage (the hubs and I do our banking in a somewhat complicated arrangement that works for us). The great Jimmy Buffet once sang, "You treat your body like a temple; I treat mine like a tent." And it is with that line in mind that I have decided to be at least half as good to my body as I am to the place it inhabits. In other words, as of today, I am spending the money and making the effort to eat right.

My last post was a cathartic wake-up call to what can only be described as my food addiction. Eating right is no matter of rocket science. There is no great veil of secrecy as to its means and its end. Cheetos = bad. Raw veggies = good. Drink more fluids. Avoid the trans-fats. Watch those carbs and sneaky little calorie bombs like sodas, nuts, and juices, but remember that there is room for most things in moderation.

It is the moderation part with which I have the most difficulty. Once upon a time, I went vegetarian for two months as a self-selected research subject for a graduate paper I was writing about the environmental impacts of our dietary choices. For the record, the average American diet requires the production of a ton and a half of carbon dioxide-equivalent—comprised of carbon dioxide, methane and other greenhouse gases—compared to a strictly vegetarian diet, say University of Chicago assistant professors of geophysical sciences Gidon Eshel and Pamela Martin. Even as a vegetarian, I struggled with moderation. I've always had a love affair with bread, crackers, chips, potatoes, pasta. And it doesn’t matter if its whole-wheat, fiber-enriched, low-fat, baked whatever if you eat the whole damn bag of it. Calories are calories. My weight swung back and forth: up seven pounds after several bagels and then back down to where I started, down a pound, then back up three. Eating wasn’t so much an exercise in not eating meat as it was in self-control.

As I again focus on what I am putting into my body, my intent is not first and foremost to lose weight. Being good to my body is the only thing that I can control about my vascular disease, as unlike high cholesterol, it cannot be treated with a pill. Yes, I need to lose weight. Yes, that will probably happen as a result of being better to my body. I'm okay with that. However, the most important thing as I take on this task is to maintain perspective. For me, this is not simply a matter of a New Year's resolution that occurs presto-chango. This is a matter of retraining my body and my soul. It is what Stanford's behaviorial design expert, BJ Fogg, would call an exercise in small habits created to establish a path in life.

What I am asking for you to do is to join me in my effort to retrain myself. Perhaps you too wish to make changes in your life. Fantastic. Perhaps you don't. That's fine too. It is my hope that making my goal public will give me a greater sense of accountability, and that the public will both support me in my efforts and hold me responsible for my course of action. Will you help me?

Terrible Twos-day: Duo Edition

2012-01-24T08:58:00.004-05:00

Shower singer or karaoke maven? Member of the choir or closet rock star dreamer? Add your voice to these musical duos, or if the neighborhood cats and dogs all run from your musical antics, perhaps it is best if you just hum along.

Jack and White - Double Trouble

She & Him - Don't Look Back

Norah Jones & Dolly Parton - Creepin' In

Bonnie Raitt and John Prine - Angel From Montgomery

Taj Mahal & Ry Cooder - By & By (Poor Me)

Ali Farka Toure & Toumani Diabate - Sabu Yerkoy

The Chemical Brothers - Swoon

Get your Tuesday on.

We Are What We Eat

2012-01-23T01:19:00.001-05:00

I didn't exercise today—or really any of the days before that. Exercise hurts. It makes me tired. I am afraid of doing too much and hurting myself. I made sugar cookies last night. I used real butter and real sugar. There are no more left today. I had a burger and fries for dinner tonight. The burger had cheese on it. I had a side of ranch for the fries.

I have had triple bypass surgery. I have had a stroke.

Do you blame me for my disease?

Yes.

I would not expect you to do otherwise.

You do not understand my disease. My disease has no known cause and no known cure. And despite my having made decisions not to sweat off my calories consumed and not to eat smart, the fact is this—my disease manifested when I was a scant 95 pounds, horseback riding six days a week, and eating next to nothing because the pain I experienced upon eating was too much to bear. My disease, though vascular, does not involve plaque, or heart attack, or obesity. My disease is the result of abnormal cell growth within the artery. There is little I can do about it. The only thing that I can do is take good care of my body. And there's the sticking point.

In 2005, surgeons bypassed my renal, celiac, and mesenteric arteries. My renal artery was more than 90 percent closed off and my kidney was dying. My celiac and mesenteric arteries were completely closed, and the resulting loss of blood flow to my digestive organs caused violent vomiting and diarrhea in addition to burning and stabbing pain so intense that, when not slumped on the bathroom floor, I would pace the floor, my fingernails clawing marks into my palms. The bypass surgery immediately relieved all my suffering. I had spent nearly two decades living with a fear of food and that at any time and in any place, I could become crushingly and seemingly inexplicably ill. The change was so dramatic that I no longer knew my body.

In the wee hours of the morning a few months after surgery, I was parked outside my local hospital's emergency room, crying, debating whether or not to go inside because I had a strange burning sensation in my chest. I had become so used to dealing with pain that I continued to wait, and as I did the antacids I had taken began to work. As the pain subsided, so did my anxiety. Antacids had never made a dent in my old body's symptoms, but my new body, suffering nothing more than heartburn, responded to the chalky pills. I felt stupid. I felt betrayed. Even if my old body caused me misery, at least I was familiar with it, so what was a victory became something new to overcome.

It took me more than a year to become comfortable with my new body, and even then there was the decidedly undesirable side effect of losing control of my bowels while I slept—a raw truth I share because I wish no other patient to feel so embarrassed and alone for as long as I did. Only this year did my relationship with another patient who shares my disease and who had a similar surgery allow me to discover that I was not the only one to experience this effect. It was one that I had been cautioned about upon having my gallbladder removed nine years prior, but it never manifested to the same degree as it did post-bypass. Though physically pain free, my pride was near mortally wounded on more than one occasion.

Within a year's time, I had had surgery, gotten engaged, and subsequently acquired a live-in fiancé. The fiancé and I got married; we got a dog; we bought a house. In 1967, psychiatrists Thomas Holmes and Richard Rahe studied more than 5,000 patient medical records to determine if there was a correlation between stress events and illness. They came up with 43 life events and assigned a point value to each. A score of 300 or more points within a year was said to contribute to illness; a score of 150-299 meant a moderate risk; a score under 150 meant little to no risk. I was at 366. (My new husband was not far behind.)

Diagnosed with depression and anxiety as a freshman in college, I was aware of my pitfalls but did not always manage to avoid them, and as my depression and anxiety partnered with so many major life changes, I began to self-medicate. I ate. I ate sadness and despair and shame. I ate fear and envy and blame. I ate inadequacy and nervousness and pity.

Though still barely within my BMI range, I weighed more than I had ever weighed. In college and pre-bypassm I had shopped in GAP Kids or wore at most a size 2. As an adult, I was around size 4 to 6. I'd crept up to an 8 or even 10. And then, I had a stroke. The stroke a complication of my vascular disease, which as best as the doctors could determine was a blockage or perhaps related to the four cerebral aneurysms they later found. My bypass failed because the diseases' abnormal cell growth had again grown the arteries closed. And so again, I ate. I ate uncertainty and impaired ability and unfairness. I ate guilt and dependency and frustration.

And I never stopped.

It would be so much easier if I could force feed a cake directly into my heart and inject gravy directly into my head to fill the voids that are torn into them. Food does not judge. Food does not forsake. Food will never see my vulnerability. Instead I forsake myself, give in to my vulnerability, and consequently judge myself and find myself lacking because I can not, or at least am not, doing the one thing that I can do to help control my disease, which is to treat my body well. It is not a diet that I need. I need a better way to binge, if not for my soul, then upon it.

World Rare Disease Day, Grand Rounds, and The Afternoon Nap Society's Healthcare & Social Media Mashup

2012-01-22T17:42:00.001-05:00

A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap Society will use social media to connect patients and healthcare providers while raising awareness of World Rare Disease Day.

As a rare disease patient and healthcare blogger, I saw a unique opportunity to facilitate this collaboration, which will bring RARE Project’s rare disease blog hop together with Grand Rounds, an online collection of each week’s best in healthcare blogging. As a participant in the RARE Project’s Jan. 30 blog hop and as host of the week’s edition of Grand Rounds, The Afternoon Nap Society will serve as crossroads for readers. Those readers following RARE Project blog hop posts will be linked to Grand Rounds’ featured posts, and those readers who follow Grand Rounds will be linked to the RARE Project blog hop as one of the weekly edition features. “Grand Rounds has always sought to highlight the best of the healthcare blogging community, and the RARE Project’s mission is certainly worthy of recognition and acclaim,” said Nick Genes, MD, PhD, who is Grand Rounds’ founder and a resident in the Emergency Medicine program at Mount Sinai Hospital in New York City. “This collaboration represents a rare opportunity to align goals. We’re thrilled to be working together.”

This collaboration has the potential to bring together bloggers from around the globe to raise awareness of World Rare Disease Day, held on Feb. 29, and facilitate the exchange of information and ideas among healthcare professionals, patients, advocates, caregivers, and journalists. It is yet another testament to the fact that social media has emerged as the new frontier in medicine. Its rapid, interactive format and global reach provides healthcare professionals and patients with the ability to exchange information and ideas with an audience that is larger, more diverse, and more widely geographically distributed than traditional face-to-face interaction ever would allow.

It is my hope that this collaboration among The Afternoon Nap Society, the RARE Project, and Grand Rounds will help others use social media to breakdown geographic borders, make connections with one another, and learn more about the rare disease community. Whereas patients with more common diseases such as cancer or diabetes stand a very good chance of knowing someone who has been affected, a rare disease patient — particularly one who lives outside a highly-populated metropolitan area — may be the only patient with his or her diagnosis at a doctor’s practice. I know I am. Social media helps reduce the isolation rare disease patients may experience. I was fortunate that shortly after my diagnosis with intimal fibromuscular dysplasia, I connected with another fibromuscular dysplasia patient on the Mayo Clinic’s discussion forums. That connection resulted in additional connections around the world, and now I have a online community of patients and healthcare providers that I consider to be family as much as friends. As a group, we are making rare feel so much less alone.

For more information about RARE Project, visit rareproject.org, or to sign up to participate in the RARE Project’s blog hop, email bloggers@rareproject.org by Jan. 23. Discover more about Grand Rounds at getbetterhealth.com/grand-rounds. To learn more about how to submit a post for the special collaboration edition of Grand Rounds, click here. Please also follow @RAREproject, @grandrounds, and @afternoonnapper on Twitter, and find us all on Facebook too.

Stop SOPA, Stop PIPA

2012-01-18T01:37:00.000-05:00

The Afternoon Nap Society is joining thousands of others in the fight against SOPA and PIPA.

I urge you to oppose the Stop Online Piracy Act and the PROTECT IP Act. These bills will kill jobs and stifle innovation, undermine cyber security, risk censoring the American Internet, and provide cover for totalitarian regimes that want to undermine Internet freedom abroad.

Learn more. STOP SOPA

The Day Valentine's Day Died

2012-01-11T02:46:00.000-05:00

To lose a loved one on a holiday means that each year the anniversary rolls back around with festoons made grim by association.

I don't remember how old I was when my grandmother died, but I remember that it was on Valentine's Day. Mema had had a heart attack and was staying with my parents and me afterwards to recover. She had been doing well, but another episode landed her back in the hospital. My mother, father, and I were all dressed up and ready to go out the door for a Valentine's Day dinner together when the phone rang. I didn't know it at the time, but it was the doctors saying that Mema's heart had failed again. If my mother wanted to say goodbye, the doctors could keep Mema alive (or at least as alive as she could be) until my mom got there.

My parents dropped me off at a friend's house. They didn't come back to get me. I remember the phone ringing in the middle of the night, and I somehow knew that the call meant Mema had gone. In the morning, I called my mom and asked, "How's grandma?" The question caught me as strange. I'd never called Mema that. She was always just Mema.

I didn't cry until I got home. I opened my closet and there hung my Girl Scout vest, which Mema had been hand sewing my badges onto. That's what did me in. I took a small comfort in the fact that I had sent Mema a coffee mug covered with hearts and a white teddy bear inside it and a giant heart-shaped balloon that said, "I love you!" I knew that she had seen it before she died, and that at least I got to say what I felt for her, albeit in shiny, crinkly mylar.

My grandmother was 17 when she joined the United States Cadet Nurse Corps in 1944 through Grace Hospital in Banner Elk, N.C. The U.S. government established the program in 1943 to ensure that the country had enough nurses to care for patients both on the home front and at war. The Cadet Nurse Corps greatly increased our country’s number of nursing students, led to greater public recognition for nurses, and changed how nurses were educated and trained.

Mema only spent a year in Corps, but it was a year that shaped her future goals. My mother remembers the distinctive grey and white striped cotton of the summer uniform tucked away in a drawer. Mema's Cadet Nurse shoulder patch always remained with her New Testament.

Mema refused to let her dream of being a nurse die. She worked full-time as a licensed practical nurse while attending college, finally earning her Associate Degree of Nursing in 1976—31 years after leaving the Corps.

Perhaps then it is no coincidence that at age 31, I have discovered my own passion for healthcare. Upon being diagnosed with a rare type of a rare vascular disease (intimal fibromuscular dysplasia), I began writing about my own health experiences and working to both raise awareness of my disease and improve communications between patients and doctors. This type of writing falls within the realm of narrative medicine—combining the humanities and scientific thought, breaking down barriers, and providing a different medium through which to discuss the medical profession. Moreover, this type of writing has allowed me to find my meaning in the world.

I haven't celebrated Valentine's Day since Mema died. All the hearts and the red roses and the pink frilly things just come off as saccharine, manufactured, and meaningless. If one is going to love someone, one should love that person every day and show it every day because any day might be the day that person is gone.

Special thanks to Dr. Claire McCarthy for her Trap Door Days.

On A Scale of 1 to 10, How Would You Rate Your Pain?

2012-01-07T21:11:00.000-05:00

It was 3 a.m. when I arrived at the locked doors of the rural hospital that was my only option for miles. Doubled-over and panting, I pressed the intercom button and gasped my request to be let inside. There was a buzzing click. The doors parted. Instead of meeting a nurse, I met no one. The registration desk was vacant. There was no on in the waiting room. I paced about, flapping my hands, and growing increasingly uneasy. Where was help when I needed it?

A doorway on the other side of the registration desk opened, and a woman in scrubs beckoned me inside. The woman appeared entirely unconcerned with my state of unmistakeable physical duress. While I tried to answer her questions about insurance and previous surgeries, I buckled from the pain. Still non-phased, the nurse continued my interview as I, down on my knees, clung to a chair and answered her questions with my eyes squeezed shut.

Finally, taken into the ER, I was told I would have to wait for the only doctor working that night. So I did. I waited, and I waited. I have always taken great pride in my ability to remain calm in emergency situations and to be an agreeable, communicative, and dutiful patient. I do not make a scene. I do not make a fuss. It is my firm belief that being an overly-dramatic, screaming, crying mess does absolutely nothing to help my doctors actually treat me. My family members know this. They have been with me in the hospital on more than one occasion, emergency and otherwise, and will testify to my ability to keep cool under pressure. So as we waited for the doctor and I writhed on the floor, my mother, who was traveling with me, grew worried. Before we'd even left our hotel to go to the hospital, she had stated her fear that I was having a heart attack. At the hospital, she sat as calmly as she could, clutching her purse on her lap, and pointedly told the nurse, "We've been through a lot, and I've never seen her like this before."

Wallowing and writhing on the floor—sometimes hunched over and clutching the empty doctor's stool and sometime curled into a ball against the wall—was less than attractive. I knew that. I had no other choice. I explained that when I had first begun experiencing the symptoms of mild pain under the curve of the left side of my rib cage that I had thought it was gas. The doctor, thought still absent, ordered a GI cocktail, something that was explained to me as a cross between Mylanta and lidocaine. Though still huddled in a ball on the floor, I knocked back the shot of white stuff in a singular, desperate gulp and thrust the empty cup above my head. The nurse simply said, "Oooook..."My tongue went numb, but nothing improved. Finally, a nurse asked the ubiquitous question, "On a scale of one to ten, on which ten is the worst pain you've ever felt, how would you rate your pain?"

I lied. I think I said eleven. Hell, maybe I said fourteen. The problem with the one to ten pain scale is that it is completely subjective. What is my ten is not my husband's ten is not my friend's ten is not my doctor or nurse's ten. If I answered my truth—that I was at about a seven or eight—I feared that I would not be taken seriously. I have had pain that involved throwing up and excreting blood so frequently that I've passed in and out of sleep on the bathroom floor; I have had organs removed; I have been cut in half sideways for elaborate bypass surgery; I have had broken bones; I have had both my jaws sawed apart and put back together with metal plates. I have experienced pain. However, at any given moment the healthcare professional asking me about my pain on a one to ten scale doesn't consider all of this—emergency or not. The heathcare professional doesn't truly know me, and I don't know him or her. The healthcare professional can not ask, "So how does what you're feeling now compare to that time I stepped on a rusty nail and had to go get a tetanus shot?" I don't know how that rusty nail and tetanus shot felt for the healthcare professional and the healthcare professional doesn't know how it feels to be me.

On any given day, my pain is around a two or a three. I live with it. I do not take medications for it. Whether at home or in the hospital, I only make the request for meds when I hit a four and am headed toward a five. I am cautious. I actively worry about ever developing a dependency on pain meds. Perhaps I could cut myself a little more slack, but I'm not going to because being able to feel pain at least lets me know that I am still alive. In my head, I reserve a ten for a pain that I have not yet experienced—say being run over by a train. Perhaps this is wrong of me because the pain scale question describes ten as "the worst pain you've ever felt" and since I've never been run over by a train, I don't know for sure what that feels like. Consequently, I have promised myself that if I am in a situation in which the pain is truly the worst I have ever felt, that I will answer, "This is my current ten."

The problem remains that I fear being classified as a drug-seeking patient if I ask for medication at anything less than pain scale level of five or six. Yet, I also fear not being given adequate pain medication if I remain true to my personal experiences and classify my pain at a level that is less than whatever my healthcare provider things is necessary to warrant medication. It is a lose-lose situation in which there is no right answer for a patient to give. We must come up with a better way to communicate our pain and suffering and for healthcare providers to interpret pain and suffering without judgment.

The body responds to pain in physiological and measurable ways including pupil dilation, increased blood pressure, sweating, and increased rate of respiration. Healthcare providers placing a greater emphasis on these markers rather than on subjective numbers and pictures of frowny faces would increase the accuracy of pain diagnosis and management. These physiological symptoms can be applied both in the emergency setting—where at times patients are unable to communicate—and in the doctor's office where more time should be spent discussing these markers, the effect that pain—short term or chronic—is having on a patient's quality of life, and methods to reduce pain that do not involve drugs. Successful pain management will not only result in happier patients, it will result in healthier patients, as my own experience has shown that a patient who is not in pain has a greater willingness and ability to comply with doctor's orders to improve his or her health through activities such as physical therapy, emotional therapy, exercise, and diet.

This post is part of a blog carnival addressing pain scales that was organized by the amazing rheumatoid arthritis advocate Kelly Young. Kelly is known as @rawarrior and blogs at rawarrior.com. To read additional blog posts from carnival participants, please visit rawarrior.com.

What Are You Doing New Year's?

2011-12-31T00:21:00.001-05:00

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 burning going on under left ridge of my ribs, my mom called 9-1-1. We weren't able to describe our location well, and the road to where we were was less than ideal for an ambulance. Instead mom got directions to the hospital. I slid on some clothes, and we loaded into my car, which mom had never driven, in the pitch black dark, which mom doesn't like to drive in, and headed off toward the hospital, which neither of us knew exactly where was. Nonetheless, the town was small and the hospital easy enough to find, if one followed the signs.

To make a long—and sordid—story short, hospital one treated me for gas, finally took an x-ray, and concluded, "You're really sick." There was talk of transporting me via helicopter or ambulance. They picked the bus, and the family converged on the region's larger hospital where I had emergency surgery. They cut me stem to stern. It was the second time my intestines were entirely removed from my body. They stapled my stomach shut, but only marginally closed my incision—a measure I think both aimed to allow the swelling to go down and to reduce infection. Four days after surgery, they stapled me shut in my hospital bed. Out of all that I've had done, I'd never had stitches or staples while awake. I was nervous to the point of tremors. The nurse loaded on four CCs of pain killer before beginning and kept two more on reserve. "So, um, those two CCs, yeah, is that for pain or to, like, keep me from freaking out?" I asked as cheerfully as possible, given the circumstances. "Both," the nurse replied with a tone both honestly direct and comforting. "Cool, cause, yeah, um, you might wanna push that," I said.

I had three stitches and 37 staples down my middle when all was said and done. Recovery went well other than that I retained a bit of fluid in my incision, which consequently didn't close in two spots and began to gap open when my staples were removed. Though we'd been through much together, my husband had yet to actually see my insides—until then. As the physician's assistant measured the depth of my wound with a Q-tip, my own injury was less my concern as he went white and sweaty and reached for the chair. The wound would need to be packed twice a day. My husband would have to be the one to do it. With tweezers. He doesn't like to cook chicken. It took a month, but we got through the healing. My scar is stupendous and makes X only marginally shorter than my inseam.

The third hospital visit was to see the surgeon who did my renal, celiac, and mesenteric bypass in 2005. At that time, we didn't have an official diagnosis for what caused my arterial stenosis. Takayasu's arteritis first was considered. Fibromuscular dysplasia was mentioned on the lab reports. My health was great until May 2008 when my I had a stroke, discovered my bypass had failed, and that I had four brain aneurysms. I lost my kidney as a result of the failed bypass. We concluded that my gastric rupture must play in as well. We agreed it was time to see a FMD specialist, so I headed to the Cleveland Clinic. My diagnosis came as a blessing and a curse. Knowing what I have is great. What I have is not great to have.

In early November, I had to make another trip to the hospital for an outpatient procedure. Again, all went well, but again my husband ended up packing a wound—a much larger one this time. As we close in on the New Year, we're in the closing stages of wound care, but it's been a long two months. Shortly after the procedure, I was given the opportunity to be a speaker at the state's only support group for brain aneurysm patients, which meets at Duke Raleigh. I'd gone full circle from literally crawling in the emergency room door to commanding a Power Point about my disease in a hospital classroom.

So I guess it's all to say that it could have been worse. I hope I can say it again next year.

Terrible Twos-day: YouTube Edition

2011-12-27T08:18:00.001-05:00

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.

Happy Tuesday!

The Healing Hound

2011-12-22T10:41:00.000-05:00

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. Golden Labs are reliable, if not overtly friendly dogs, and I’d known a Norwegian Elkhound at the horse stable where I rode as a teen. He was protective and fiercely loyal to those of us he saw on a regular basis. As I held that squishy double handful of puppy in my hands one late winter day, I was hooked.

My husband didn’t want a dog. He was fine with other people having dogs; he just didn’t want us to have a dog. I was persistent, or perhaps I was simply annoying, and in that our first year of marriage, my husband caved. As we filled out the adoption papers, our puppy lolled in a sweet sleeping puppy coma, exhausted from playing with his six other brothers and sisters. That would be our last moment of peace for the next year.

While my husband and I had both had dogs before, we had never been responsible for the raising of one. Bruce, as he was named, was more than we bargained for — even at rescue adoption prices. He never … ever … ever … ran out of energy. An hour at the dog park wasn’t enough. No amount of destroying stuffed toys was enough. Electrical cords were tasty treats. The three cats were horrified. Six living beings were too much for our little townhouse. There were tears shed and serious discussions as to whether or not we’d screwed up, whether we needed to find Bruce a new home. Even after we bought a new house with a fenced in yard, Bruce drew my husband’s ire by digging holes – a telltale sign of his then abundantly obvious hound traits. The breaking point was one night when Bruce chewed a hole through my husband’s Carhartt jacket. I made an online plea — “Save My Marriage, Adopt My Dog.”

But as much trouble as Bruce caused, I loved him. He and I had a bond, and that night as we sat on the sun porch steps with our heads pressed together, my husband saw us. With a sigh he said, “You don’t have to give away your dog.” So Bruce stayed, and tried harder to manage his energy through training. For all his faults, Bruce was never stupid. He knew no, sit, shake, down, stay, move, and my personal favorite leave it/take it in which he would lie on the kitchen floor and I would balance a treat on each paw, making him wait for my command, drool not withstanding, to gobble up the goods. “Leave it” also worked in regards to the cats, socks, and dropped non-food items.

By age two, Bruce showed the makings of a real dog. He also ate an entire bar of Dial soap and learned how to steal a full beer from a camp chair cupholder. By age three, we figured he had to mature sometime soon. Friends with hunting dogs pegged him as a Black Mouth Cur and Plott Hound mix. By age four, he played patiently with our six-year-old niece who spent the whole of Christmas taking his rawhide and hiding it another room.

Bruce turns five in January. He’s scared of our cat Penelope, fireworks, lightning, gunshots—both real and on TV—and the dark. He’s just the kind of hound that most hound owners wouldn’t want, but he’s just the right kind of hound for me.

AfternoonNapper's Fibromuscular Dysplasia

2011-12-16T23:18:00.000-05:00

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 told just to take it easy for the next two weeks. Who knew that brain surgery would be one of the easiest surgeries I've had yet?

Exactly why I developed aneurysms is unknown. There is evidence that they are side effects of my overall diagnosis of fibromuscular dysplasia. It's also been said that I may have an undiagnosed and unidentified connective tissue disease overlap that would lead to aneurysms. Speaking to the Niekro Foundation's group allowed me to talk about my aneurysms in the context of FMD and subsequently how social media has played a part in having a disease like FMD.

Please take the time to watch—and then share!

AfternoonNapper's Fibromuscular Dysplasia (Part 1)

AfternoonNapper's Fibromuscular Dysplasia (Part 2)

The Advocate As Caregiver

2011-12-12T00:03:00.001-05:00

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 the act plays out time and time again, what was once a chorus deteriorates into a solo. The effect of standing on stage alone depends on the singer left standing—either the soloist manipulates the spotlight or the song is silenced altogether. Neither outcome is preferred.

We can not be advocates alone. We must have the support of our fellow advocates, which comes in large part from supporting our fellow advocates. The same principles that we apply to teaching caregivers to care for themselves—allow for breaks, seek outside help, reward yourself—should be applied to the advocate community. What else is an advocate other than a caregiver who cares so intently as to try to affect change? Change is difficult to attain. It is made even more so, when the change that one is pushing for relates to a patient community that is, by its very nature, beleaguered by disease conditions. Such advocates themselves often are impacted by the disease they try so hard to support. When a member of the patient community suffers an event or is overwhelmed by symptoms, the community rallies around that patient. However, patient advocates may well find themselves reluctant to admit feeling the same things that the patient community experiences. This behavior is not uncommon in families. Mothers tirelessly provide for children but never confess to being run ragged and depressed. Fathers work ceaselessly yet never say they feel unappreciated and overlooked. Patient advocates may develop these same complicated relationships with the communities they are trying to serve, which begs the question—who advocates for the advocate?

Without resources in place to help advocates, I fear that our chorus will lose valuable members. During a recent TweetChat about healthcare leadership, the great @NateOsit said that a true leader enables others to become leaders. There is much to be learned from that statement. Today's advocate leaders have taught me so much about being an advocate, and I am making it a goal to in turn teach others about being an advocate. It is my hope that by doing so, no single advocate will feel overburdened by his or her responsibilities and that the overall community of advocates will grow and become stronger, which will mean more patients will have someone on whom they may rely. Healthcare professionals must remember that many advocates came into their roles for much the same reason as they were—a call to help and serve. Let us give those who have arisen to meet the need to help and serve the emotional and physical care to continue.

Engage With Grace

2011-12-03T09:25:00.001-05:00

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

2011-12-01T23:57:00.001-05:00

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 the Arch De Triomphe, I curled up on a twin bed in the corner and slept for at least 14 hours straight.

However, Paris was only our first stop. I got sicker the further we went. Embattled with a full head and chest cold that made me cough so hard I nearly threw up, even in my sleep, I had no choice but to try my luck at a pharmacy on the way from Annecy toward the Riveria. After several years of studying French, I was a relatively competent reader, a mediocre at best speaker, and a miserable writer—of course none of these skills account for cultural relevancy. Though I had deciphered one Parisian menu to feature black rice, I failed to ascertain that the rice was blackened with squid ink. Medical terms never were covered in my French classes, so at the pharmacy I feared myself an incompetent fool. Perhaps I was not the first tourist to stumble into the tiny hillside pharmacy or perhaps I was and simply looked miserable enough that the pharmacist took great pity on me as to suffer through my attempts at describing my symptoms. She smiled, helped me find the right words, and used hand motions when needed. Though, I couldn't repeat it, I remember the pharmacist asking if my coughing was driving my mother crazy to which I responded an emphatic, "Oui." I was given codine jellies for during the night. Thankful, we carried onward, eventually settling in Provence near Arles, which is where Van Gogh painted his classic, Cafe Terrace at Night.

Mostly on the mend from my cold, I embraced—a bit too heartily—a celebratory meal that concluded with Baked Alaska for dessert. Throughout the trip, I had been lucky that my usual stomach ailment had not been problematic. For years, I only nibbled at meals and had excruciating pain that was first attributed to problems such as irritable bowel syndrome, a dysfunctional colon, slow gastric emptying, and acid reflux, then also pegged as gallstones—which indeed I had and as a result had my gallbladder removed at 17. We didn't find out until nearly six years later that my celiac and mesenteric arteries were completely occluded as the result of fibromuscular dysplasia, which was the true cause of my distress. By the time my parents and I got back to our bed and breakfast, I wasn't feeling well. Within a few hours, I was alternately pacing and kneeling on the floor, head hung over a trash can, flapping my hands and crying from the pain.

Talking to emergency medical service workers is a high stress activity in the best of situations. Attempting to contact EMS workers while in a foreign country, with minimal command of the language, in the middle of the night is worse. To boot, the phone workers were on strike. I'm not sure how many times my mother pushed numbers on the phone hoping to reach a human and repeatedly said the words "doctor" and "help." As best we could determine, we were not successful. Desperate, my mother went outside to search for anyone to awaken and stood outside other guests' bedroom windows calling for help. No one even turned on a light. After two or three hours had passed, so too had my pain, which made it all the more surprising when four oxygen tank- and stretcher-carrying EMS workers showed up at the door and tromped up the narrow hallway to the bedroom where I sat in the middle of the bed. The only thing I could figure out how to say was simply, "Je suis malade." They were not impressed. I tried as best I could to explain, but how can one explain a disease that she doesn't even know she has? The next morning at breakfast, which I did not eat, fellow guests asked one another if they had heard someone calling for help in the night. Indeed, they all had heard my mother, but chose not to respond. All the guests were fellow Americans, and one, who lived in New York, said that she had assumed that the cries for help were just a ruse.

Now, eleven years later, I have been invited back to France. It's rather a twist of fate that this time I have been invited to be a speaker at Doctors 2.0, an international health care and social media conference 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, public agencies, and others. The conference will be held May 23-24 in Paris. This time the trip is not a family vacation, and while conference organizers are covering a portion of my costs, it is not an all-expenses paid adventure. Unlike those in the medical profession, I do not have the personal means or the organizational backing to make the trip happen. As a result, I am on a fundraising mission. I have 173 days until the conference kicks off to raise an estimated $1,500. Already, some of my fellow fibromuscular dysplasia patients and other generous donors have come through with financial support totaling $265.82. On Dec. 1, I launched a Cafe Press store for The Afternoon Nap Society, which couldn't have been done without my wonderful husband providing the designs for a whole line of t-shirts, coffee mugs, tote bags, and—wait for it—pajamas. Support from my friends garnered an additional $70.06 the first day the store was open. Only $1,164.12 left to go.

As we head into the gift giving season, I ask that you please consider making a donation or shopping at The Afternoon Nap Society store. I realize that there are several charitable organizations that need and deserve your support. In no way do I wish detract. Your willingness to help spread the word is support enough. Thank you.

Express Yourself

2011-11-25T00:00:00.000-05:00

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.

Reading Robert Frost on Thanksgiving

2011-11-24T03:47:00.001-05:00

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.
For I have had too much

Of apple-picking: I am overtired
Of the great harvest I myself desired.
There were ten thousand thousand fruit to touch,
Cherish in hand, lift down, and not let fall.
For all
That struck the earth,
No matter if not bruised or spiked with stubble,
Went surely to the cider-apple heap
As of no worth.
One can see what will trouble
This sleep of mine, whatever sleep it is.
Were he not gone,
The woodchuck could say whether it's like his
Long sleep, as I describe its coming on,
Or just some human sleep.

— Robert Frost

Raising FMD Awareness In Style

2011-11-19T01:45:00.001-05:00

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 indicate that it may not be as rare as it is simply underdiagnosed. FMD can masquerade as other vascular diseases and, in cases such as mine, present with gasterointestinal symptoms that throw doctors for a loop. There is no blood test for FMD—just as there is no real treatment and no cure. The gold standard for diagnosing FMD is via angiogram, which provides a detailed look at a patient's arteries and may reveal the tell-tale string of beads of the medial variety or narrowing that may at first look like traditional atherosclerosis or stenosis in my own intimal variety.

As FMD Chat continues to grow, we hope that FMD patients and family members, healthcare providers and caregivers, supporters and advocates may draw their own inspiration from the logo. We are patients, and therefore we understand what it means for patients to put their hope, faith, and effort into a support group—it is a matter of holding one another's hearts, it is a matter of trust, it is a matter of compassion, and it is a matter of patients doing unto others as they would have done to them. We thank all of those in the FMD community who have chosen to participate in FMD Chat—we couldn't do it with out you.

To learn more about designer and photographer Margaret Hester, please visit her at pictographybymargaret.com, on Facebook, and on Etsy, where her work is available for purchase. Please connect with FMD Chat on Facebook and Twitter.

Waesuck Wednesday: Occupy Healthcare Edition

2011-11-16T02:39:00.001-05:00

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 wish the protesters well if for no other reason than caring enough about something to stand up to the status quo is admirable. Their methods may not be entirely well-directed, they may not be entirely effective, but complacency and complicity is a far greater crime.

The Occupy Wall Street movement has spawned other Occupy movements, notably Occupy Healthcare. Most anyone who has dealt with our current health care system or who has not been able to deal with our system due to an inability to pay for care would agree that the system is flawed. The OHC movement reports that two out of three bankruptcies in the United States originate from medical bills. Those organizing the movement don't pretend to have all the answers, but their goal is to foster a dialogue about how to improve the system and ultimately improve patient care. OHC leaders pose an important question on the movement's website, "How can we, the community, have our moment to influence and impact healthcare? Or, as the Occupy Wall Street movement has shown, how can we, the community, rise up and demand more for 'the 99%'?" Visit occupyhealthcare.com to give your answer or to get involved.

Wanna Get Lucky?

2011-11-12T03:01:00.001-05:00

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 considered too small for coiling. It is however still there, and I think about it often. So far none of my doctors have recommended that I elect for an attempt at clipping the aneurysm. I am monitored with a yearly brain scan to check for growth or changes in the aneurysm. I have mixed feelings because on one hand I would like for the aneurysm to be large enough to treat with coiling, but on the other hand I do not want my aneurysm to grow, and generally, the fewer people rooting around in my brain the better. My good friend, Amanda, says that I should name the aneurysm. I've though about calling it Fred.

My status as one who has brain aneurysms—lest that word "survivor" be used again—has led to my involvement with the Joe Niekro Foundation. The foundation was established in 2007 to honor baseball's Joe Niekro, who died suddenly as the result of a ruptured brain aneurysm in 2006. The problem with aneurysms is that they tend to be asymptomatic until they rupture. Discovery is often incidental. The foundation's head-turning tag line speaks to that: "Wanna Get Lucky? Get Scanned." Note that the "Wanna Get Lucky?" bit is the only thing on the front of the foundation's t-shirts, a design trick that I'm sure has drawn more than one cat call by wearers' way. The tongue-in-cheek saying has the tremendous benefit of being memorable and hopefully—after the cat calls—has prompted more than one discussion about aneurysms among those who had not previously thought about them.

On Nov. 21, I will be traveling to Raleigh, N.C. to be a speaker at a Niekro Foundation brain aneurysm support group. The meeting will be held in conjunction with Duke Medicine. Doctors at Duke coiled foundation secretary Janie Schaeffer's unruptured aneurysm, which is the only reason her Carolina blue blood continues to flow. I and my fellow speaker also are Tarheels. I'm hoping the two schools' rivalry will result in a competition over who can send more med students and doctors to the meeting in order to hear our patient and survivor stories. The meeting will be a truly rare event. I am an intimal fibromuscular dysplasia patient—FMD is rare, IFMD represents less than 10 percent of cases (so far I know of five cases internationally). My fellow speaker experienced spontaneous coronary artery dissection, which up until recently was thought too rare to effectively study. We're not zebras; we're unicorns.

Those interested in attending the meeting are advised to contact the Niekro Foundation via the organization's website, Facebook, or Twitter. I'll also be sure to more specific meeting information as it becomes available via The Afternoon Nap Society blog, Facebook, and Twitter.

Caring for Caregivers

2011-11-10T04:11:00.000-05:00

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 Tissue plasminogen activator (t-PA). The drug dissolves clots by thinning the blood, but poses serious bleeding risks. Stacy had become unresponsive in the time it had taken to get to the hospital, so it was left to John—her husband of six days—to decide whether to allow doctors to administer the drug, which could either save Stacy's life or kill her.

John, for the second time in a week, said I do, consenting for doctors to give Stacy the drug. She lived, but began bleeding in her lungs. She was placed on a ventilator, and John was told that if the bleeding didn't stop, the worst case scenario would mean removing one of Stacy's lungs. It took six days, but the bleeding finally stopped. The question that remained was how much neurological damage Stacy had suffered. "Being on the ventilator and heavily sedated, I couldn't communicate," Stacy writes in her submission to Tiffany Burke Photography's online Love Story Contest for a second honeymoon. "I tried communicating with the nurses and was told that I pointed to my ring finger and they knew then that I wanted my husband. When he got to my room, I squeezed his hand and he knew everything was going to be alright."

Recovery would be arduous, and Stacy asked her new husband a serious question—whether, given her condition, he still wanted to be married to her. John asked back, "What kind of man would I be if I left you when you needed me most?"

Stacy is among those who found true love and a love who would accept the role of caregiver. To become a caregiver for a loved one is no small task. Relationships are complicated enough without the dynamic of one person depending on another for his or her health and survival. In the most serious of situations, both patient and caregiver are saddled with the loss of independence and ability. What the patient can not do for him or herself the caregiver must do, and the time and effort caring for a patient takes reduces the caregiver's ability to care for him or herself.

The importance of caring for caregivers can not be minimized. A caregiver is a person who has, by choice or by call of duty, given him or herself to helping another person—but that caregiver is still human. According to a 2009 report by the National Alliance for Caregiving, more than 65 million people provide care for a chronically ill, disabled, or aged family member of friend during any given year. On average, these caregivers spend 20 hours a week caring for their loved ones, while 13 percent of family caregivers spend 40 hours a week or more. Many of these caregivers do not have the luxury of making caregiving their job and so are working to bring in an income in addition to providing care—73 percent of those caring for someone over age 18 in fact. Reports state that the stress of caregiving translates into three-quarters of family caregivers not going to the doctor as often as they should, nearly half of working caregivers reporting that an increase in caregiving expenses has led to using up all to most of their savings, with 40 to 70 precent of family caregivers showing clinically significant symptoms of depression.

I have not been in the position of being a caregiver; however, I have been—and will continue to be—a caregiving recipient. My experiences have taught me about the humanness of my caregivers. Like Stacy, I had a stroke. Mine was at age 28 after a year and seven months of marriage. One morning I was a reporter on deadline. The next morning I was unable to walk. After a week in the hospital, I had mobility using a walker, but would run into walls. I had double vision with Horner's syndrome on the left side of my face and the loss of pain and temperature on my right side. For several months, the neurological damage was too bad to very actively combat. My husband would get me in front of the TV—which I saw two of due to the double vision—make provision's for snacks and beverages and then have to go to work. Upon his return, he would find me exactly where he left me. He would make dinner, help me bathe, and then set about taking care of the routine responsibilities around the house—doing laundry, cleaning, caring for our pets, etc.

Fortunately, we did not then (and do not now) have children. I lost my job, which added stress to my husband's already profound sense of duty. Fortunately, my parents are part of my caregiving team, and from time-to-time I would go and stay with them for a few days in order to give my husband a break. He would stay home, watch TV, drink a beer, and enjoy not having me around. There was nothing mean about our arrangement. It was simply honest. Caring for me took a lot of his energy. In addition to always being sure to vocalize my appreciation for all he was doing, what I could do to help him help me was to allow him time to rejuvenate, to give him space and time to be himself, to breathe, to not be so damned responsible. One day I searched online for information about caring for caregivers. A cancer site offered up words like bittersweet chocolates on a silver platter—grief, loss, frustration, anger, resentment. These were the words that my husband and I were choking down without acknowledging their existence—for him. He had not yet grieved the vibrant wife he lost. He was frustrated that he could not fix me. He was angry at the world. And at times, he resented me and all the care I required. Each emotion was at once horrible and a relief to acknowledge. Each emotion was valid and human. We stopped pretending everything was alright, and we cried tears of grief, loss, frustration, anger, and resentment together.

Three and a half years later things are better. Our lives as individuals and our life together changed with the stroke and continued to change as my health became increasingly complicated. While I recovered most of my function, there are still deficits, and since the stroke, I have lost a kidney, had three of four brain aneurysms repaired, and experienced a gastric rupture. My husband has been my caregiver throughout it all. Like Stacy, I have offered my husband a chance to get out. Like John, my husband has never taken me up on it.

Remember to vote for Stacy & John's Love Story!

Just Because I Have The Same Disease As You That Doesn't Mean I Like You—But That's OK

2011-11-06T03:12:00.000-05:00

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

2011-11-05T03:46:00.000-04:00

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

2011-10-31T01:23:00.000-04:00

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)

To Flow As Water Does

2011-10-27T01:53:00.000-04:00

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, sounds, textures, etc—that he or she has gone tremendously out of his or her way not to come into contact with the feelings originating from the trauma. I equate it to walking around the other side of a building that takes up a full city block in order to avoid a puddle. Patients most likely will not be successful in dealing with their trauma and its lingering emotions if they attempt to change their perspective by running headlong into the puddle. Rather it is a process. First, one must think about not walking around the other side of the building. That in an of itself is a challenge. Then one might decide to examine the puddle from afar. Next the puddle may be approached. Perhaps the patient throws a stone in the puddle. The patient might then sit next to the puddle. Each phase of the process is slow and dutiful, and at any time there may be regression so that the patient again must walk around the other side of the building in order to experience a bit of relief from the intense feelings that arise from dealing with one's puddle.

This exercise allows the patient to address their fears and emotions with a certain degree of control. Control is the very thing that many trauma victims lost and what they try so vigilantly to maintain post-trauma as a method of coping. But trying to control everything that goes on around us is exhausting. Patients may seem stressed, hyper-critical, and unreasonable, but all they are really trying to do is protect themselves from being hurt again. Fear is the motivation. Fear is what must be quieted.

Like trauma victims fear losing control and being subjected to reminders of their trauma or a subsequent trauma, we fear death because we can not control it. We try to. We hang on so tightly that we strangle our own lives, and when the time comes, deathbed wishes tend not to be that we were more punctual, or had the oil changed more often, or cleaned the bathroom tile grout more throughly. The regrets are that we did not live more, love more, laugh more.

And so we must learn to let go. We must learn to control only that which we can control and which is worth controlling, and let the rest be as it will. We must relax, accept, and move with the fluidity of life like a leaf floating on the surface of a rushing stream. We will be swept along, we will reach eddies and be trapped by twigs, we will sink, and we will rise, yet we will still be a leaf. And when our leaf finally settles in its resting place, it's return to the earth will nourish new life, and so the cycle continues.

As we accept our condition of impermanence and allow ourselves to move with the flow, we may still exercise good judgment to make preparations that will ease the lives of those around us at the time of our passing. Such is the role of advanced directives, which spell out an individual's wishes for end of life care in the event that the individual can not speak for him or herself. Rather than leave family members, friends, and caregivers wondering what one's wishes might be, one can have a say and help alleviate some of the doubt and stress of decision making. To issue an advance directive is to give the gift of peace of mind. For those who struggle with a desire to control life and death, writing advanced directives is the closest that one can come. Directives are not simply wills that divide personal belongings. Advance directives relate to all documents regarding the end of life. Directives allow one to say whether he or she desires life prolonging measures, whether measures should be taken for two weeks or two years, whether one wishes to donate organs, how one wishes to have his or her body put to rest, as well as how one wishes financial and property issues be handled.

Those whose end of life wishes may be considered unique or those who already know that their wishes are not in line with their family's wishes are particularly encouraged to pursue advance directives. For example, I have determined that I want a green burial—one without embalming fluids that will allow me to decompose naturally in a green cemetery where coffins are made of natural materials or bodies are buried only in a shroud. My advance directive outlines this wish, as well as notes my desired cemetery, my casket of choice should one be required, my pall bearers, and my wishes for visitation and burial ceremonies—there will be punch and pie and pierogi. I update the document, which is a simple form that I keep on my computer, every year or so and have shared it with my husband and parents. My directive documents are not legal documents because I have discussed my desires with my family. My family is supportive of my decisions. Those who may not have this kind of support will want to ensure their documents are legally binding—not to sue from the grave, but for peace of mind.

Evaluating one's own final wishes can be an extremely uncomfortable task. Consequently, my recommendation is to think about final wishes before one needs to think about final wishes. Although the questions often are deep and emotional ones, one is essentially writing an agreement—though is it easier for one to change his or her mind about whether to play Eric Clapton or B.B. King at the service than it is to get out of a cell phone contract. Families may wish to make writing advance directives a group effort to be approached with love and light and laughter. The fact of the matter is that the majority of people are afraid of the same things, which means that no one is actually alone in their fears. Like the trauma victim working through the therapeutic process, talking about fears takes away some of their power.

Caring Connections, a program of the National Hospice and Palliative Care Engagement Organization, provides a wonderful set of resources for creating advance directives including state specific directives and information about starting a discussion with loved ones about advance directives and end of life issues. (To access these resources, visit this link.) Before beginning such a conversation, one should read Dr. Ann Becker Shutte's "Five Steps for More Compassionate Listening" to help facilitate a productive and caring dialogue. Shutte is a licensed counseling psychologist who also leads a weekly Twitter chat about end of life issues at 10 p.m. EST on Wednesdays. To participate, follow the #EOLchat tag. Make it a goal to have discussed matters with your loved ones—or better yet have written your own advance directives—by April 16, 2012, which is National Healthcare Decisions Day and allow yourself to spend your energy living instead of trying worrying about dying.