Everything Is What You Make It

Lead. Be kind. Help others.

Help one another. Help someone you know. Help someone you don't know. Help someone in a small way. Help someone in a big way. Help a person, help a place, help a thing.

And then celebrate it and share it.

We need some good news. We need to set the tone for 2017. And we have power to control it. We have the power to be better than decent and spread it around. As we do so, we demonstrate to others how we want to be treated.

Perhaps my request is simplistic and hokey. Or perhaps believing it to be so is indicative of the current state of things — that somehow we've come to see being kind as a silly waste of time. There's a culture of "I'm going to get what's mine" that has pervaded our lives. It comes from competition. It comes from struggling to achieve in an environment that champions acquirement more than generosity. We do not need all the things. We are not lesser people because we do not have all the things. And having all the things does not make us better people.

But help — helping and receiving help — has enriched my life in so many ways. It's all that they say about paying it forward and more.

No, we won't turn the world into one great big snuggly ball of love and goodwill overnight. We can start small and make kindness and helping others something that we do day after day after day until it is a habit that comes naturally. I believe that we can do it.

I have to believe that we can do it because I'm so tired of all the bad news. It grows, feeds upon itself, becomes normalized from our Facebook feeds and 24-hour news shows into our daily actions. We don't have have opposable thumbs and free will so that we can be horrible to one another. We are capable of great things. And, like it or not, we are all leaders because someone is always watching and learning from our actions. What kind of lessons do you want to be remembered for teaching?

Now... pass it on.

And In The Wilderness A Clearing Emerged

In addition to my work as an advocate, my actual "job" has been as a reporter and editor. I've been in the field professionally since I was 17 (though one could count running the school yearbook and starting a literary magazine as my initial forays). My first employment outside a horse stable was in an university's public relations office. I worked four summers there moving up from the mail room and putting together basic press releases to writing full articles and contracting for assignment work while at college. I earned a degree in journalism with an outside concentration in political science at UNC-Chapel Hill. While there I worked as a writer, desk editor and managing editor of The Daily Tar Heel; wrote for and edited a literary magazine; volunteered for Journalists United to Maximize Potential, a student-run organization that taught middle school students how to produce a newspaper; interned in public relations for the Morehead Planetarium; and interned in public relations and artist promotions for a record label.

After college I went to work for a twice-weekly paper in South Carolina, which was a formative experience that I was happy to leave nine months later. I got two cats out of it and a love for police scanners. I took a job as a reporter near home in the mountains of North Carolina on Sept. 23, 2003. I rose from reporter to special sections editor for all our contract publications. When our company acquired a nationally-distributed slick-glossy magazine, I became assistant editor and then managing editor in 2010. (And yes there was time spent teaching and being a licensing test proctor in there too...) Since then I've reshaped the magazine, grown its content and overall vision, and — as the years went by and my advocacy work took off, I even had opportunities to involve some of my health contacts in writing pieces for it.

However, my passions changed the more involved I became in advocacy. I saw a greater ability to make a more immediate impact by connecting with patients, providers and industry leaders. Advocacy work made all my personal illness make sense. Illness was a strange gift of burden that gave me unique knowledge and experiences. To communicate about illness was a challenge with deep personal impacts. I was afforded opportunities to grow in this regard and turn my knowledge and experiences into solutions for the healthcare community at large. And I suppose one could say that I fell in love with doing, with getting elbow deep instead of being an objective observer.

Thus I found myself in the position of being all in — with the caveat that I was not yet all out of my job as an editor. For much of 2014, I juggled as many serving plates as for a dinner party of 108. We began planning to revamp the magazine to feature more web content, ad sales experienced an uptick, writers came and went (sometimes not by their choice), and the culture of innovation I loved so much in my advocacy work influenced me to keep editorial offerings fresh. By summer, I was named Coordinator of ePatient Programs for Stanford's Medicine X and learned just how little sleep I really needed as the conference crept closer and collided with press deadlines. I've always worked well under pressure, but this time the pressure also had a way of crystalizing my priorities.

I was supposed to spend the week after MedX connecting with nature. Instead I was gnashing my teeth. Out in the wilds of Yosemite, I only occasionally received a cell signal, which was sufficient for texting at best. Online access could be had only late at night or early in the morning. In the dark hours with my phone held just so, spotty 3G connected me to all those also suffering the #MedXHangover, their blog posts, their continuing conversations. And I felt so very left out and alone.

Then an email arrived from my publisher. We needed to talk about deadlines. Or at least he needed to talk about deadlines. I did not. I needed to deconstruct, discuss and disseminate every detail of my thoughts about patient engagement, clinical trials, online communities, mental health, self disclosure, relationship building, innovation, collaboration — everything that fostered in me the inspiration to continue advocating for change. And thus the decision was made. I replied to my publisher that I no longer was the right person for the job.

We traded emails for two days, and I did not tell my husband — who works for the same company — about any of it. The last night of our trip, we were well into working our way through a water-front bar's microbrew list when he demanded answers.

Him: "Is my kitty okay?"
Me: "What?" 

Him: "Is my kitty okay?"

Me: "Your kidney?"
Him: "Is Nelson alive?"

Me: "WHAT?"

Him: "Is my cat Nelson still alive?"

Me: "Um... yes? What? Why do you think Nelson is not alive?"

Him: "You've been kind of dodgy for a couple of days. Is Nelson dead and you haven't told me?"

Me: (brow furrowed) "What kind of person do you think I am? Geez. YES. Your kitty is FINE. I've just been thinking about making a major career change."

Him: "Oh. Okay."

That night he was happy and supportive. In the morning, when he had sobered up, he was terrified. 

Me: "I knew I shouldn't have told you until I had a plan!"

Him: (consternated) "What IS your plan?"

Me: "Give me a few days."

Him: (incoherent grumbling)

It took another week for things to truly begin to come together. I lined up enough contract work to cover the basics. A side project offered the promise of a business plan. A start-up company scheduled a meeting. And my publisher and I went out to lunch. Four days before my 11-year anniversary with the company, I negotiated my exit strategy. 

I will remain at the magazine's helm for one more edition, assist in hiring a replacement, train said replacement during 2015's first edition and then transition to a contributing editor role. The arrangement frees me to do what I do best and enjoy most — writing, contributing to the creative vision, editing and developing web and social media content — while eliminating managerial duties, thus giving me more time and flexibility to be an advocate and independent consultant. Already I am committed to speaking in Philadelphia and Australia and consulting locally, in Philly, California and Washington, D.C. by April. I also will pursue opportunities for a writer's residency with the intent of working on that book so many have been prodding me to do. 

This pivot, this new plan for the future would not be feasible without years of encouragement and support from friends, family and mentors — though really those categories greatly overlap one another. I thank all of those who have been part of my journey thus far, and I do sincerely hope that they will continue along with me as I hack a new path. Yet I caution — the only following each person must do is to follow the course his or her heart knows to be true. 

RLS

twitch twitch twitch twitch twitch

twitch twitch twitch twitch twitch twitch twitch

restless legs syndrome

twitch twitch twitch twitch twitch

twitch twitch twitch twitch twitch twitch twitch

just leave me alone

twitch twitch twitch twitch twitch

twitch twitch twitch twitch twitch twitch twitch

meds 20 mgs strong

twitch twitch twitch twitch twitch

twitch twitch twitch twitch twitch twitch twitch

not always enough

twitch twitch twitch twitch twitch

twitch twitch twitch twitch twitch twitch twitch

i bang with my fist

twitch twitch twitch twitch twitch

twitch twitch twitch twitch twitch twitch twitch

confusing the nerves

twitch twitch twitch twitch twitch

twitch twitch twitch twitch twitch twitch twitch

beating the culprit

twitch twitch twitch twitch twitch

twitch twitch twitch twitch twitch twitch twitch

who won't let me sleep

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

Express Yourself

In Irving Stone's biography of Vincent Van Gogh there is a line that reads, "Many times in your life you may think you are failing, but ultimately you will express yourself and that expression will justify your life." It was years ago that I first came across this maxim, and it immediately halted my reading and jolted my heart. There is no other quote that has resonated so deeply within me and continued to do so.

I've been lucky enough to be a writer in some form or fashion for the vast majority of my life. While I was in kindergarten, a local writing teacher worked with our class, and I wrote a story about a grasshopper. My mother, of course, saved the story in a box along with school photos, misshapen pieces of art class pottery, and report cards. The writing teacher had hailed my grasshopper story as very descriptive and encouraged me to keep writing. Several years later, the writing teacher—Kathryn Stripling Byer—was named the state's poet laureate. This 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.

When I Grow Up

As a child, I knew I wanted to be a writer—or maybe a lawyer—but mostly a writer. Writing was what I was good at and what I enjoyed. I always made As in English, and I won a few awards. I became the editor of our high school yearbook, and for the first time the yearbook was completed early and turned a profit. With my extra time, I started a school literary journal. Such things looked good on my application to UNC-Chapel Hill. I was accepted. One night—torn by practicality and personality—I cried at my family's kitchen table, "All I want to do is be an English major!" My father, an attorney, walked out of the room cursing.

I majored in journalism—the working man version of an English major—with a concentration in graphic design and outside concentration in political science. I volunteered with a student-run program called Journalists United to Maximize Potential in which we worked hands-on with sixth, seventh, and eighth graders to produce a school newspaper. I joined the staff of The Daily Tarheel, working my way up to managing editor. Over various summers I interned in the public relations offices of Western Carolina University, the North Carolina Center for the Advancement of Teaching, and the Morehead Planetarium. I graduated. I got a newspaper job. I hated it. I left.

I got a new job. It was better. I moved up the ranks from reporter to special sections editor. I am now the managing editor of a nationally published magazine. I also teach English to remedial level students at the local community college. I am months away from finishing my master of liberal arts degree with a focus on writing and literature. My graduate work led to my being selected to present a paper at the First Graduate Liberal Studies Conference at Georgetown University.

Despite these accomplishments, despite my continued upward momentum, I still feel so green, so filled with wide-eyed wonderment at all the possibilities the world still holds. My life is not a matter of what I have done but of what I have yet to do. Such promise is exhilarating and terrifying. What a gift to awaken to the realization that the best is yet to come!

As the lucky recipient of a scholarship to Medicine 2.0 at Stanford University, I spent the past weekend discovering my life's next path. The three-day conference in the sunshine resplendid city of Palo Alto brought together a true meeting of the minds. I learned about the integration of social media into healthcare—of interest to me as a writer, a public relations/marketing geek, and as a patient. The lessons were invaluable and will serve as motivation for many months worth of blog posts, tweets, Google+ and Facebook updates. However, the technical lessons pale in comparison to the lessons learned from the host of passionate and compelling speakers and attendees. I am enthralled. I am engorged with excitement. I am ebulient.

Conference guest speaker Jennifer Aaker, General Atlantic Professor of Marketing at Stanford and author of The Dragonfly Effect, spoke of the effect of small acts creating big change and her selection of the dragonfly to represent that ability—by using its four wings, the dragonfly can fly in any direction it chooses. This is me, happily learning to exercise all four wings.

Waesuck Wednesday: Back to School Edition

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

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

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

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

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

There's Something Wrong With Us, But We're OK With That

I was reading old posts from the Houston Chronicle's Good Mom/Bad Mom blog featuring Jenny Lawson, the wonderfully deviant author of her own separate blog, The Bloggess (Like Mother Teresa, Only Better). Jenny's very first Good Mom/Bad Mom post was an introduction in which between the lines was a surprisingly honest account of herself. In short, she identifies herself as a mother, a wife to a husband who refuses to donate his organs for fear of needing them when he becomes a zombie, a Czech redneck, and one who suffers from anxiety and from time-to-time goes off her meds "just to see if I’m still crazy. Turns out? Yeah."

Although she doesn't know it, Jenny has become my new best friend. In similar form my biography would indicate that I am a mother to three cats and one dog, a wife to a husband who refuses to donate his organs because he's an asshat, a Czech redneck, one who suffers from anxiety and from time-to-time goes off her meds "just to see if I’m still crazy. Turns out? Yeah." It's like we were separated at birth, which makes more sense than having been separated at any other time since I've never actually met Jenny and so far our only correspondence has been me offering her a writing job and her turning it down in order to work on her book. I'm supposed to be working on my book right now too. Well, technically I gave myself a 2012 start date, so I guess I've still got a few months until I'm really procrastinating.

Several more posts in to the Good Mom/Bad Mom blog, I came across one of Jenny's roundups of recommended reading, which pointed me to the Cynical Nymph. Her bio reads that she is a New Yorker, a wife, an only child, a "kitteh mama," a Francophile, a Shakespeare geek, and "and a woman who has struggled with an eating disorder for the better part of ten years." WTH? Though a North Carolinian, I too am a wife, an only child, a "kitteh mama," a Francophile, a Shakespeare geek, and a woman who has struggled with depression for more than ten years. Nymph (who does not identify herself by name) also is my new best friend, although she doesn't know it.

Where have these women been? Why did I not know that other such women exist? Why can these women not live in my town and spend copious hours with me being snarky over coffee and/or drinks?

I don't like women, which is problematic because I am one. The vast majority of my 31 years has been spent thinking that women are silly and vapid. Perhaps it was a matter of age. As a youth, I tended to socialize and converse best with people much my elders. As a young woman, it was easier just to drink beer, eat chicken wings, and talk sports than to pretend to give a flip about fashion or my weight or babies. It's only been recently that I have begun to meet women my age who impress me with their wit, talent, and intelligence. I'm not sure if we've just all grown up, or if I'm somehow keeping better company, or if (fingers crossed) the really stupid women are too busy putting on mascara while driving and coming to their timely demise thus leaving the rest of us to congregate. It has been at once a relief and absolutely terrifying to find these women with whom I connect because I finally have friends that actually matter.

However, both Jenny and Nymph raise another matter that is near and dear to my heart—mental health. I was first diagnosed with depression as a freshman in college. All I knew was that I wasn't feeling well, hadn't been eating much, and had had an upset stomach for weeks. I went to student health between classes. They took one look at me and wouldn't let me leave. I had to call my professor to tell her that I was being held hostage and that the doctors wouldn't tell me why. They ushered me upstairs to a shrink. Honestly, I remember nothing of the conversation, but apparently if one looked up depression, my picture would have been next to the entry. It happened that my parents were in town to visit, and I was late meeting them. I didn't know how to tell them about my diagnosis. I felt ashamed, broken, insufficient. We went shopping, and I managed to get a few moments with them individually to break the news. It went better than I expected, but I don't think that at the time any of us grasped the situation's seriousness.

Over the next year I struggled with my mental and physical health, made some bad decisions, didn't do too well in classes, and came home for the summer beaten. It was a time for reflection, and I decided that I could wrangle my thoughts best off medication. I broke off a bad relationship, excommunicated several "friends," and finally went back to school in August with a better head on my shoulders. Amazingly, I made it through college without much else incident, but the depression came roaring back after graduation when I moved to South Carolina for my first job as a reporter. The job was H-E-L-L, I lived alone, and there was no time to do anything but work. When I began truly contemplating losing my job in favor of staying in bed curled into a tiny ball with my back against the wall, the covers over my head, the doors locked and the lights off, I figured it was time to see a therapist again—maybe. Other staff members at the newspaper recommended one in particular, but perhaps I should have taken it as a sign that I was in the wrong profession or at the wrong place when the local shrink offered our company a group discount. My first visit I spent talking to the therapist's dog and rubbing its ears incessantly. I quit that job on my birthday in 2003 and moved back to North Carolina to work at another newspaper.

Fast forward to 2005, I had tried both Zoloft (awful) and Paxil (better, but meh), but again gone off any meds because frankly its hard to be a writer and be medicated. There is something beautiful about being crazy. Misery breeds creativity, at least it always has for me. On meds, I felt muffled. Off meds, I was a wreck, but my writing was good. Bad health forced me to have triple bypass at age 25. An eight-hour surgery performed to save one's life is, to put it blandly, a life altering experience. To complicate matters, doctors thought I might have an incurable arterial disease. The surgery was so invasive (read: they literally cut me in half) that I was incapable of doing anything significant on my own for months. I was relatively okay with all of that. What I wasn't prepared for was that the surgery would work. For as long as I could remember I was unable to eat with any regularity due to decreased blood flow to my guts—the reason the bypass was needed. With the bypass, suddenly I felt good, I could eat, and I didn't know what in the hell to make of that. My body was not my own anymore. It was this strange thing with which I was completely unfamiliar. I was lost.

Through the grapevine, I heard of a local therapist who specialized in patients who had major heart surgery. I was overjoyed. Though my bypass was not coronary, I had little better chance of finding someone who understood the mental and emotional effects of my surgery. I drove for an hour each way to my appointments. We talked. It helped. The therapist told me about a new drug called Lexapro. I tried it. It has been my magic friend now for nearly five years. I love it because, for the most part, I do not know I'm taking it. For me, it does not produce the same side-effects as Zoloft or Paxil, which both seemed to lessen the highs and lows by making me feel nothing at all. There is a part of me that would still like to be off medication, but now I am a wife, and I feel it is part of my responsibility to not actively engage in behavior that makes me impossible to live with—i.e. not taking my meds. Sometimes I slip. Sometimes I fall off the bandwagon. Sometimes my husband finds me in a dark room, unshowered, surrounded by food debris, and sleeping. He tries his best. "Are you okay," he asks. He lets me lie to him. And he lets me cry on him.

The point is this—Jenny and Nymph both are writing about the darkness of their diseases, and here I have tried to do the same. These diseases, and others, need not live in darkness. It is through exposing them that we take away some of their power, through sharing that we find like souls, and through difficult, sometimes painful work that we begin to heal and make peace. Whether Jenny and Nymph ever know that I exist, I at least know that they do, and that helps me feel less alone.

no-named long-faced it

no-named long-faced it
lives in the woods,
olive green gnarled fists
crush song birds,
sharpened fingernails
spear tiny breasts,
that die.

no-named long-faced it
laughs like bones clatter,
twisted legs and yellow eyes
sneak in tree shadows,
alligator jaws
smack hungrily,
for dinner.

no-named long-faced it
claws window panes,
lolling red tongue
sticks with putrid saliva,
brass knob
jiggles and turns,
it enters.

no-named long-faced it
snorts lustily,
pencil-thin fingers
hunt furtively,
sinewed arms
embrace her body,
she sighs.

no-named long-face it
stays with her,
doorway and demon
entwine rapturously,
caving chest
accepts misery,
she cries.

Who am I, and Where am I Going?

I've been having trouble parsing my identities—writer, editor, teacher, patient, wife, student... Each title fits, and yet there are still others that I could use depending on the context—gardener, traveler, daughter, foodie, eco-friend, arts lover, sports fan... At any given moment I am each and every one of these things; but who I identify myself as changes based on who is in the room. Does this make me interesting, diversified, and busy or just plain crazy, undirected, and harried? Do I admire people who have a clearly defined personality or do I see them as one-dimensional and boring?

Twitter—of all things—is what has gotten me to contemplate these questions. I'm not an avid "Tweeter," but I joined the Twitter ranks a few months ago to learn more about the effects of social media. (Don't I sound like an old fart?) What has struck me most is that those I follow each has his or her own "thing." Mark Peters, aka wordlust, is irreverent. Andrew Evans, aka WheresAndrew, does travel. Ed Nickow, aka TheCubsInHaiku, offers just what his handle implies—coverage of Chicago Cubs' games in haiku form. Each has a specific focus. They don't tweet about their other hobbies or their families or any other aspect of their lives that doesn't fit within their narrowly defined Twitter persona. I don't know how to censor my self that way. My blog is a testament. There are posts about teaching. There are posts about gardening. There are posts about a short-lived position I had as a test proctor. There are posts about my medical history. There is no focus. There is no theme.

Unless, of course, the theme is me. But where will that get me? Isn't it little more than an exercise in self-aggrandizement to write post after post about the details of what's going on in my life? Who cares? What am I contributing to the dialog? I am not nearly famous enough for the putterings of my life to attract an audience. There needs to be something more. There needs to be form and substance. What can be accomplished when one is forced to adhere to form can be much stronger than when one is given free rein.

What do I want to write about? What do readers want to read about? Help me figure it out.

The Role of Biological Rhythms in the Management of Fibromuscular Dysplasia

Fibromuscular dysplasia is a seldom seen arterial disease characterized by abnormal cellular development or growth. It is most often diagnosed in women, a fact that has led researchers to theorize that there is a connection between FMD, as it is known in short, and hormones. A second postulation is that the disease is a genetically based development disorder. These theories—and others—remain exactly that, and the disease’s cause remains unknown at this time. However, there is evidence that chronobiology-based treatments may have a role in managing fibromuscular dysplasia.

Unlike more common diseases such as diabetes or cancer, FMD is not clearly symptomatic. Diagnosis is often stumbled into after arterial condition has deteriorated so as to manifest a vascular event such as high blood pressure, kidney failure, or stroke. Additional manifestations include a bruit heard within the carotid arteries, swooshing sounds in one’s ears, ringing of the ears, vertigo, dizziness, headache, neck pain, transient ischemic attack, arterial dissection, intracranial aneurysms, and Horner’s syndrome, a rare disorder that occurs when select nerves that travel from the brain to the eyes and face are damaged, causing a drooping eyelid, decreased pupil size and decreased sweating on one side of the face.

Imaging such as magnetic resonance angiography or arteriogram is the prescribed method for diagnosing FMD, which in its medial form presents a “string of beads” appearance in the affected artery. The less common and more aggressive form of FMD—the form with which I am expecting to be diagnosed at the Cleveland Clinic on August 3—causes arteries to become extremely narrowed or completely occluded without the hallmark string of beads appearance. The disease is incurable and, unlike arterial diseases such as Takayasu’s or Wegner’s arteritis, cannot be treated with steroids or other medications. Surgery often is required to maintain or restore affected arteries’ patency.

For now the best—and only—form of management for FMD is repeated screenings to monitor patients’ arteries and for patients to foster good health practices common to other vascular patients such as not smoking and eating a balanced diet. However, patients and doctors would be well advised to implement precautions based on biological rhythms into routine FMD management. “A group from Harvard estimated this risk and evaluated that on average, the extra risk of having a myocardial infarction, or heart attack, between 6 a.m. and noon is about 40 percent,” said Roberto Manfredini, professor of internal medicine at the University of Ferrara in Italy, in an article on the most likely time for one to experience a heart attack published by TimeHEALTH. “But if you calculate only the first three hours after waking, this relative risk is threefold.” Manfredini explained that the body’s cardiovascular system follows a circadian rhythm and that functions carried out in the first waking period of the day require that the heart receive more oxygen at the same time that cortisol raises blood pressure and catecholamines increase heart rate. Though we may feel groggy, our body is ramped up for action.

Furthermore, Manfredini explained that morning is when blood platelets are particularly sticky and prone to adhere to vessels. “Usually we have an endogenous system—it's called fibrinolysis—to dissolve the thrombi. But in the morning, the activity of our fibrinolytic system is reduced,” he said. Sleep itself is dangerous as its final stage—REM sleep, when most dreaming occurs—is marked by an activity increase in the autonomic nervous system, which affects heart rate, respiration rate, perspiration, and sexual arousal, among other things.

“It's probably difficult for people to minimize the effects of their own biological rhythms. For example, you cannot avoid your morning risk by simply waking up later,” Manfredini says. The argument therefore exists that patients with high blood pressure, regardless of cause, take their medication at bedtime so that, assuming one pill offers 24-hour coverage, the medication is in a higher concentration in the morning instead of petering out on the verge of the next dose. Given FMD patients’ pre-disposition for stroke, transient ischemic attack, arterial dissection, and intracranial aneurysms, it is wise to keep blood pressure in control and keep naturally-occurring morning peaks from further stressing the system by taking medications to lower blood pressure, such as prescription diuretics or Norvasc, at night. Given the same proclivities, ensuring that blood-thinning medications such as aspirin or Plavix are taken at night so as to reduce morning risk is recommended.

FMD is most frequently seen in the renal arteries and may reduce blood supply to the kidneys. The result is emission of the enzyme rennin, which raises blood pressure to force blood through the kidneys, and reduced kidney function. Impaired kidney function means that the body cannot properly flush itself of waste. FMD patients in particular should not take nonsteroidal anti-inflammatory drugs (NSAIDs)—common over-the-counter pain relievers—which reduce the catalytic activity of prostaglandin synthesis. A prostaglandin is a lipid compound derived from fatty acids and produced throughout the body. Prostaglandins have a variety of physiological effects including increasing the glomerular filtration rate—a measurement of how well a kidney functions—as well as constriction or dilation in vascular smooth muscle cells, found in all blood vessels. An FMD patient taking NSAIDs thereby inhibits his or her own kidney function and the synthesis of prostaglandins, the vasodilatory variation of which is being researched as a modulator of vascular smooth muscle cell growth. FMD is marked by proliferation of smooth muscle cells. The discovery of two cyclooxygenase (COX) isozymes—COX-1 and -2—has launched a new line of drugs with potentially fewer side effects than NSAIDs as well as shed light on the role each play in the biological rhythms and homeostatic maintenance of the gastrointestinal tract, renal function, blood clotting, pain, and fever.

A downside to the recommendation not to take NSAIDs is that FMD patients have limited drug options to treat pain caused by inflammation. Chronotheraphy studies of other diseases marked by inflammation have shown positive results. Osteoarthritis pain peaks at night while rheumatoid arthritis pain peaks in the morning. Drug dosages are consequently timed to match peak blood levels of the drug with pain. The research indicates that there is a biological cycle to inflammation, the further study of which could give FMD patients a way to help manage pain caused by inflammation without NSAIDs and to treat pain with newly developed COX-2 targeting drugs at optimal times. “Chronotherapy is not well recognized in the medical community but awareness is increasing,” said Gerald Sokol, M.D., an oncologist with the division of oncology in the Federal Drug Administration’s Center for Drug Evaluation and Research. “The implications are broad in every area of medicine."


Works Cited

Blue, Laura. “When Are You Most Likely To Have A Heart Attack?” time.com, Time
Health. 22 July 2008. Web. 16 August 2011.

Caswell, Jon. “The String of Beads No One Wants.” Stroke Connection. March/April
2007. 16-21. Print.

“Chronotherapy – Tunes In to Body’s Rhythms.” medicinenet.com, MedicineNet.com. 6
July 2004. Web. 16 July 2011.

Simmons, DL; Bottling RM; Hla, T. “Cyclooxygenase isozymes: the biology of
prostaglandin synthesis and inhibition.” PubMed.gov, U.S. National Library of
Medicine National Institutes of Health. September 2004. Web. 17 August 2011.

“Inflammation Research Opens Route to Better Pain Relief.” sciencedaily.com.
ScienceDaily, 26 March 2010. Web. 17 August 2011.

“Prostaglandin.” wikipedia.com, Wikipedia. 14 July 2011. Web. 17 August 2011.

Schror, K; Weber AA. “Roles of vasodilatory prostaglandins in mitogenesis of vascular
smooth muscle cells.” PubMed.gov, U.S. National Library of Medicine National
Institutes of Health. 1997. Web. 17 August 2011.

“What Is FMD.” fmdsa.org. Fibromuscular Dysplasia Society of America, September
2008. Web. 16 August 2011.

A Book From a Bucket

When one makes a bucket list does he or she put the items on that list in the proverbial bucket once they have been accomplished or take them out? Does the list exist purely independently of the bucket? Or is the list written on the bucket, each item diligently crossed out with a stringent smelling, black permanent marker, and that bucket, once satisfactorily blackened, then kicked into the afterlife oblivion?

I first began writing my bucket list in June following yet another round of surgery. My stomach had ruptured seemingly on its own, which caused the doctors to be concerned that the event was the latest symptom in my troubled vascular history. I decided it was time to meet with a doctor who specializes in the disease it seems most likely that I have but have not yet been officially diagnosed with — fibromuscular dysplasia. My appointment is on Aug. 3.

Since writing the first 30-item bucket list, I have added six more tasks to accomplish; however, I admit that four of those six items were put the list simply so that I could say that I've already done them: Make my parents proud; Be in love and loved by a man who brings out the best in me; Be passionate about something and share that joy with someone else; Be true to myself. And while I am no closer to doing the number one thing on my list — pet a tiger — I have made a decision to bring me closer to items number two - get more than a magazine article published, preferably a book - and three - write a book.

By January 2012 I will have accomplished item 26 on the list — finish my master's degree — which will free up some time to do other things. With this time, and an official diagnosis, I feel that it will be the time begin work on a book. Doing so will in turn help knock out items 22 — raise awareness of whatever disease I am finally diagnosed with (all signs point to Intimal Fibromuscular Dysplasia), 23 - participate in research to help with the diagnosis of my disease, and 24 - help teach other patients how to be good patients who are proactive and involved in their healthcare. Consequently, I have begun a search for subjects to interview.

I am seeking:

Doctors or nurses willing to go on record about their experiences with patient care.

People who have been patients within a hospital setting or been seen by several doctors for one condition and are willing to go on record about their experiences.

People who have been patients within a hospital setting or been seen by several doctors for one condition and are willing to go on record about their experiences - AND - can get their doctors to talk about their case.

If you or someone you know fits into one of these categories, please contact me. Not all those who respond will be interviewed and not all of those interviewed will be included. My focus is narrow, though my hope abounds.

In Retrospect

A recent graduate contacted me with a few questions about how I came to be where I am in my career. The questions gave me cause to think, and I felt compelled to share my answers so that any other young writers out there may glean what they will from my words.

1) How did you begin your writing career? Did you study journalism?

My writing career has been in the works since I first learned how to read. I’ve always been an avid storyteller, and the state’s former poet laureate, Kathryn Stripling Byer, commended my writing even when I was in kindergarten. There’s never been anything else I’ve wanted to do. I was always in the program for academically gifted students, and my teachers greatly encouraged my reading and writing skills throughout. In high school, my AG placement continued. I had three amazing teachers (one I had for two years). I joined the yearbook staff my junior year and was editor my senior year. We finished early — and turned a profit for the first time ever — so I used the spare time to do a literary and art journal for the school. My experience with yearbook actually turned me toward graphic design in college. I’d always written and wanted a different skill set. I went to the University of North Carolina-Chapel Hill, and my overall major was indeed journalism, though my concentration was in graphic design, and my outside concentration was in political science. While at Chapel Hill, I worked for The Daily Tar Heel. I began as a writer on the arts desk, quickly became assistant desk editor, then desk editor, then I was managing editor of the paper as a whole. Also, I spent summers (even before starting college) interning in three offices of public relations, which both kept me on as a writer during the school year for occasional projects. After graduation, I took a job as a general assignment reporter in South Carolina. Frankly, it was hell; however, I do not regret doing it. Every budding reporter needs to get a few good threats from readers under his or her belt. My first two weeks on the job I got to cover a murder trial in which the defendant was accused of killing his girlfriend in a drug-induced rage. He blamed four young black men. The girlfriend had been stabbed in the face and neck 27 times, though each of three wounds would have each been fatal alone. Good times. I lasted nine months, quit on my birthday, didn’t have another job lined up, and asked my parents for three months rent on the promise that if I didn’t find a job in that amount of time, I was coming home.

2) How did you begin working with the magazine?

Another company owned the magazine until about three years ago, when the newspaper company I was with at the time bought it. I had been with the newspaper company since 2003 (the job I found after quitting in SC). I began as a reporter covering two counties, one of which was the county in which I had grown up. The newspaper's format is different from a “community” paper in that it is a news magazine. It doesn’t cover local sports or who grew the biggest zucchini or obits or crime. It focused on regional issues, and reporters do much more in-depth stories than would ever be found in a more traditional paper. It was this format that attracted me to the newspaper. I did the reporter gig for about two years and then moved up to a newly created position of Special Sections Editor, in which I oversaw all the editorial content and production of our contract publications. The newspaper could be described as more of a publishing house since the newspaper is just one of the many (MANY) things we do. Such publications help pay the bills since print overall is declining. Companies need to be like any good stock portfolio — diversified. The Special Sections Editor job also allowed me more flexibility with my schedule and got me off the road a bit. (No more late night commissioners’ meetings – yay!) In 2005 my health had taken a bit of a turn and, long-story short, I had triple bypass surgery. All was well, until May 2008 when I had a stroke at work and on press day no less. Fear not — my health issues are not a result of my job. I was out of work completely for about six months, during which time my job was phased out. The newspaper was able to give me some part-time work while I recovered, and I was able to return to an office of public relations for some part-time work as well. Never one to be down and out, I used the employment gap to finally go to grad school. In January 2009, I enrolled at the University of North Carolina-Asheville where they have a Master of Liberal Arts degree. Most of 2009 was spent working part-time and recovering from various things. I had my left kidney removed in September 2009 and three brain aneurysms repaired in December 2009. Somewhere in there I came on as an associate editor for the magazine. By late 2010, I was doing a majority of the work for the magazine, and in December was named managing editor. It is one that requires much business acumen in addition to traditional writing and editing skills. My tenure has marked the magazine’s increase from four issues a year to six, and I’m glad to say that we’re turning a profit.

3) I read on the author-bio page of the magazine website that you have recently begun teaching remedial English. I went to a liberal arts college and have experience teaching and tutoring as well. Do you recommend supporting yourself with another career to supplement writing, or have you found that this is a good way to gain “processing” time in between articles?

The honest answer about teaching is that after my stroke there was a period of time in which we did not know if I would ever be able to return to my previous line of work or work at all. I went back to school because I had the time and to force my brain and body to work rather than atrophy. My end goal with the master’s degree was to become eligible to teach full-time at the college level; however, I was extremely fortunate to be offered a part-time teaching gig last year. I jumped at it. It is wonderfully rewarding, and if a full-time gig becomes available, I’ll have some hard decisions to make. However… teaching is a red-tape nightmare. If I could simply teach, I’d be happy. Paperwork is a killer. If anything, my writing is an escape from the hard and fast rules of teaching. Processing time is little to none in my world. I do make a point to go and sit and think from time to time, but it is something that happens by virtue of a concerted effort. There is always something I could and should be doing. Downtime really is just procrastination. I’ve heard from other people who have been happy doing only one thing. I tend to find such people boring. Even when I only had one job title, I was juggling multiple stories, deadlines, projects, and side projects.

4) Do you have any advice off the top of your head for aspiring freelance writers just starting out?

Writers are a dime a dozen. People who fancy themselves writers often are wrong, and in today’s market there is always someone else who is willing to write better, more cheaply, on deadline, and without the attitude. The absolutely best thing any writer can do to endear him or herself to an editor is to do the story right (as in read and understand the assignment, get multiple sources, and proofread the thing before submitting it); communicate if there are problems/respond quickly to emails from an editor/and leave the editor alone otherwise because no one likes a high-maintenance writer; and meet deadline. If an editor can trust a writer, the writer will get more assignments. All that said, don’t be choosy. Prove yourself first with whatever schlock assignment you get. I do try to get to know my writers’ interests and cater to those interests when I can; however, there it is incredibly frustrating when trying to assign an article and the response back is, “That’s not really my thing.” I don’t care. Make it your thing. It is your job. Also, get your own camera — and a good camera at that. We require our writers to submit photos with their articles, and a writer who can’t even take a mugshot is of no use to me. Learn how to take good photos, edit files, and supply cutline material.

5) The magazine's website has an editorial submissions instruction tab. Does this mean you accept unsolicited articles, or do you respond to queries?

Sort of. Again, many people fancy themselves to be the next best thing, and often they are not. We get things in that are just… well… not what we’re looking for. However, I don’t pretend to know everything about everything. I’m interested in story ideas, and if a writer can show their work, he or she may in turn get the assignment. Some ideas get filed away for months. I’m being fairly strict and directed with the editorial focus of the magazine, which has made it a better product.

6) Is there anyone else in your field that you recommend that I talk to?

Talk? Not so much. Listen? Yes. Get in a newsroom. Observe what everyone is doing. Take mental notes. There are so many little things that go in to being a good employee that schools aren’t teaching. Make friends with the people who really honestly put the paper out – not just the tunnel-visioned reporters. Otherwise, READ! Learn how to tell a good story, which is really what writers do no matter the medium. For current writers, I particularly like Tony Horwitz and Sarah Vowell. Listen to This American Life every chance you get. Listen to A Prairie Home Companion. Talk to yourself about what you want to do, to be, to read, to write about. If you’re not interested in what you’re doing, no one else is going to be.

The Bucket List

Next month I will turn 31. My hope is for the gift of a diagnosis.

Upon experiencing a stomach rupture from unclear causes on April 24, I was jolted out of the comfortable lull into which my family and myself had settled in terms of my health. Things had been quiet, perhaps too much so, and it is patently easy for one to forget the seriousness of one's medical condition when not actively in crisis. I myself have near daily reminders be they the fact that I am still (and for all appearances always will be) deprived of the sensations of pain and temperature on my right side; the nystagmus in my left eye that affects my vision and often leads me to close it so that I may better focus; the tremendous bypass scar across my mid-section that traces my ribcage; the adjacent scar from my kidney removal; the random aches and pains and twinges and generalized weakness that begin each day; and now the 11-inch scar that splits my abdomen, curving around the right side of my belly button, which is new enough to still itch and pull each time I stand up. Please note that I do not view these statements as complaints. These are simply statements of fact. They are characterizations of my body, which increasingly seems to have a life of its own independent of my soul. My body does what it wants to, regardless of my intentions for it. It and I have spoken repeatedly about the matter, and while I believe its heart is in the right place (the doctors at least have never given us any reasons to doubt that), it just never can seem to get – and keep — its act together.

The rundown is as follows:

gallbladder removed - 1995
double jaw relocation due to TMJ - 1997
depression and anxiety diagnosis - 1998
unexplained high blood pressure begins - 2001
renal artery stenosis and celiac and mesenteric artery occlusion found - 2004
triple bypass for renal, celiac, and meseneric arteries performed - 2005
hardware from jaw relocation surgery removed due to infection - 2007
transient ischemic attack/stroke - 2008
bypass fails - 2008
left kidney removed due to loss of blood flow and subsequent failure - 2009
discovery of and coiling of three of four brain aneurysms - 2009
stomach rupture (unknown cause) with emergency exploratory surgery - 2011

* list discludes additional diagnostic procedures including CT, MRA/MRI, arteriograms, renin sampling, renal duplex sonograms, barium swallow, endoscopy, and buckets of blood taken for testing

Despite this rather extensive medical history and care from highly-qualified doctors, I have remained undiagnosed. There were theories. One from 2005 pointed to Takayatsu's Arteritis, an autoimmune type, progressive, and incurable vascular disease. Pathological examination of a sample of my artery taken during bypass surgery negated this theory, as no signs of inflammation — a hallmark of the disease - were found. As the years progressed the best we could get was "something like fibromuscular dysplasia." In short, the disease was first discovered in 1938; however, not much has been learned about it since. It is a vascular disease that most commonly affects the renal arteries, and in its primary form, the affected artery is characterized by a string of beads appearance. The result is a reduction in blood flow that, depending on severity, can result in organ failure. The second most common artery affected is the carotid artery, which supplies the brain with blood. No one knows what causes fibromuscular dysplasia (FMD for short). There is no cure, and there is no specific treatment — rather there is management of symptoms, which tend to occur seemingly randomly and include high blood pressure, kidney failure, ringing and/or swooshing in the ears, vertigo, headache, transient ischemic attack, stroke, Horner's syndrome, neck pain, and artery dissection. I have had ten of those eleven symptoms. The eleventh, the artery dissection, is missing only because we do not know exactly what caused my stroke. However, my arteries do not have FMD's signature string of beads appearance, which means that if I do have FMD, it is a rare version of it. The likelihood is that it is the intimal FMD variety. Intimal FMD is characterized by a long, smooth narrowing of the artery.

While in for a routine checkup at Bowman-Gray/Baptist Hospital in Winston-Salem, I discussed with my doctor my recent stomach rupture and how we were unsure of its cause. I brought up that I had been looking into FMD again, how it seemed like such a fit for my case, and how the Cleveland Clinic had a specialized FMD team. The team is one of five in the nation focusing on the disease. My doctor fully endorsed the idea, saying that if I hadn't wanted to pursue treatment there, that she would have wanted to start more testing at Bowman-Gray to see what else we could find out given the stomach rupture. With her blessing (and referral), I have requested an appointment at the Cleveland Clinic and am waiting to hear from schedulers as to when I can be seen. As an added bonus, my doctor at Bowman-Gray sent me home with a stack of medical records and surgical narratives to have on hand. I am a person who functions much better when I have detailed information no matter what the situation, and to be given in-depth information to read about myself was a thrill. I pored over the records and absorbed as much as I could, of course having to look up several medical terms. Two phrases of particular interest were rather amusing in their honesty: "findings are considered not specifically diagnostic" and "difficult to explain." That's the thing about FMD. It is hard to diagnose and it is difficult to explain since doctors know so little. By going to the Cleveland Clinic, I will be in the care of the few doctors who know the most of what there is to know about FMD and will finally feel like less of a medical and more of a diagnosed patient who can possibly serve as a research link to help discover more about the disease. The research these doctors are doing is in my Bowman-Gray doctor's own words "cutting-edge." It is an incredibly exciting time in life as a patient.

However, what you may have already read between the lines is that the effects of FMD can be quite serious. FMD in and of itself will not lead to death, though strokes, artery dissection, and organ failure very well can. The median age for FMD patients was last reported at 50. A median is not an average. It is a middle number, and well, it's the middle number between 0 and 100. I could live to be annoyingly old — or not. Such diseases often prompt a lot of dwelling on the "or not" part of living. The simple fact of that matter, which is also something we tend to forget, is that any one of us has the opportunity to become "or not" at every moment of every day. We could slip in the shower. We could be in a car accident. We could have a heart attack. We could be mauled by a wild animal. We could choke on a pretzel. We are very fragile creatures overall. I have long had a pragmatic view of my condition and have tried my best to continue on with my adventures passionately and fearlessly — after the stroke caused me to lose my job, I used my new found free time to enroll in graduate school, which was a challenge for my brain and my body but fed my soul. My studies have ensured that I will never stop learning and allowed me to fulfill a life-long dream of becoming an English teacher. My students fill my heart with joy. I also have reached the point in my writing career that I have risen to be managing editor for a nationally published magazine, a job that allows me to exercise my creative, people, and business skills and gives me a tangible product to show for my efforts. On a more personal level, I am married to a wonderful, patient, stoic man with whom I will celebrate my fifth anniversary in October. We have carved out a life of loving family members, furry four-legged children, a cozy home, and a unfailing dedication to one another.

As of yet, I have no regrets... and I want to keep it that way, which is why, at my husband's urging, I have begun work on a bucket list. My goal is to identify 100 things that I truly want to do before joining the "or nots," whenever that may be. Some of the items on the list are for myself and my husband or other family members. Some of the items are purely for myself. Some items may be placed on the list solely so that I may cross them off as there are things I have already accomplished that are worth recognizing such as having made my parents proud, lived on my own, changed a flat tire by myself, and stood up for myself. The point is that the list is a work in progress, much like myself.

1. Pet a tiger

2. Get more than a magazine article published — preferably a book

3. Write a book

4. Take Travis to London

5. Go horseback riding in Big Sky country.

6. Visit Scandinavia — horseback ride through Sweden and Copenhagen, Denmark

7. Visit Athens, Greece

8. Have a ROCKIN’ wedding anniversary/recommitment

9. Learn to Latin dance — and do it well

10. Learn how to make really awesome Asian dumplings

11. Eat fresh lobster in Maine

12. Effectively tell someone off/stand up for someone in public and in the moment

13. Drive the entire length of the Blue Ridge Parkway

14. Snorkel at Stingray City in Grand Caymans

15. Cruise in and explore the Caribbean

16. Go to the National Cherry Festival in Traverse City, Michigan (July)

17. Go to Whiting, Indiana’s Pierogi Festival (July)

18. Have an extreme spa day – 2+ hour massage, mani, pedi, facial, body scrub

19. Pay for something random for a random deserving person

20. Learn to play the hammered dulcimer

21. Wear an expensive beaded dress for a fancy dinner date and evening out

22. Raise awareness of whatever disease I am finally diagnosed with

23. Participate in research to help with the diagnosis of my disease

24. Help teach other patients to be proactive and involved in their healthcare

25. Ensure our financial security by living debt-free and investing well

26. Finish my master’s degree at UNC-Greensboro

27. Earn the certificate in Multicultural and Transnational Literatures and
the certificate in Teaching English to Speakers of Other Languages from East Carolina University

28. Be the subject of/inspiration for a piece of artwork

29. Landscape the backyard to be more of a place for ourselves and guests to enjoy

30. See the Grand Canyon and stay at Cliff Dwellers Lodge in Lees Ferry – fly fish, ride a donkey into the canyon, stargaze

Say Hello To My Little Artist Friend

I have been fortunate enough to become friends with one of the area's talented and innovative artists, Alex Levine. Levine works in encaustic media, which is a process through which artwork is made using wax, resin and colored pigments. The best-known encaustic works are ancient Greek funeral portraits.

"This medium marries the richness and vibrancy of oil paints with the fluid life of watercolors while adding its own unique versatility," Alex says on his Etsy site.

Alex came to work in encaustics out of curiosity. It was a medium he first dabbled in, then studied, and went on to make his own fusing the process with pictures taken from vintage beauty advertisements. Alex creates a colored and highly textured base onto which he transfers selected images, then seals the work over embracing the imperfections left in the work.

"Each of my images in this collection explores elements of female beauty, often where the hyper-feminine and the androgynous intersect," Alex says. "My pieces employ a combination of encaustics, vintage photo transfers and oil pastels. Eschewing gauzy transparency for bold interplays of saturated color, they utilize the imperfections in the photo transfer to highlight the unique texture and dimension of the encaustic media."

Alex was kind enough to lend his artistic hand to create a logo for The Afternoon Nap Society — a sleeping woman created in a simple ink drawing. I colorized the drawing to reflect my own self.

Alex's artwork can be found at www.etsy.com/shop/encausticsbyalex.