31 December 2011

What Are You Doing New Year's?

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

The first two hospitals came on the same day, as on Easter morning I suffered a gastric rupture. I was traveling with my mother for a story I was working on. The night prior my husband and I had a campfire in the backyard. As we'd gone to bed, I noticed my stomach hurt a bit, figured it was gas, took some Mylanta, and went to bed. Through Saturday I was just fine, but that night my mother and I had a large dinner out. Again that evening, I though the tweaks in my abdomen were nothing serious, took a chewable gas tablet, and went to bed. 

I woke up at 3 a.m. in pain and in a panic. I awoke my mom with the super flat, no nonsense tone our family reserves for only true emergencies, "Mom, I need you to wake up right now." As I paced in the hotel room, flapping my hands to shake off the increasing stabbing and 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. 


27 December 2011

Terrible Twos-day: YouTube Edition

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

The 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.

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!

22 December 2011

The Healing Hound

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

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

16 December 2011

AfternoonNapper's Fibromuscular Dysplasia

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

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




12 December 2011

The Advocate As Caregiver

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

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

03 December 2011

Engage With Grace

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


01 December 2011

Seeking a Second Chance in Paris

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

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

25 November 2011

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.

24 November 2011

Reading Robert Frost on Thanksgiving

After Apple Picking

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

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

19 November 2011

Raising FMD Awareness In Style

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

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

16 November 2011

Waesuck Wednesday: Occupy Healthcare Edition

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

12 November 2011

Wanna Get Lucky?

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

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


10 November 2011

Caring for Caregivers

Stacy Schaplow was 27 when she got married on Sept. 18, 2010. She was happy and healthy other than a strange soreness in her neck that she wrote off as stress; after all, she was in a dental hygiene program and studying for her state board exams while planning her wedding to financé John. The day of the wedding she took a few ibuprofen for the pain and walked down the aisle in a stunning white dress and carrying a bouquet of white roses and green orchids with eight bridesmaids in funky plum purple dresses and peep toe pumps by her side. The two exchanged vows in an outdoor ceremony, cut their four-tiered cake together, and a few days later left for their honeymoon in Maui

It was on the sixth day of the trip while on their way to go wake boarding that Stacy had a stroke. She was rushed to the hospital via ambulance. The doctors told John that Stacy's vertebral artery dissected, causing a blood clot. Stacy was within the three-hour window of time in which doctors could administer 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!

06 November 2011

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

I enjoy playing mahjong. When I was a kid, I was a fan of Oregon Trail on the Apple IIe, but mahjong held my interest game after game. Sometimes I planned my moves. Sometimes I just tried to see how fast I could match tiles. I always liked that mahjong was a game that I could play by myself.

Only children like myself are used to doing things alone and often prefer it that way. Indeed there is an element of control that we relish. Doing things alone involves no compromise, no sharing, and complete autonomy in rigidly staying the course or wildly abandoning plans to do something else entirely. An only child left to her own devices may go from building elaborate Lego houses one moment to playing dress up the next to building Lego houses in dress up clothes because there is no one to please other than herself. The only child grows into an adult who may well prefer to work alone, stubbornly refusing to delegate lest a project be done differently than imagined. The only child may turn down 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. 

05 November 2011

All Things #hcsm

Each Sunday at 9 p.m. EST medical social media Tweeps barrage the Twitter stream with tweets carrying the #hcsm tag. The tag stands for healthcare communications and social media, and those who follow it are involved discussions covering a wide range of topics (T1, T2, etc) from the role of technology in the exam room to patient support groups. The chat, created by Dana Lewis, moves at lightning speed because so many Tweeps are in on it and there's so much to be said in the hour's time. Even if one only "lurks" (reading without tweeting), the chat is educational, inspiring, thought provoking, and a great way to "meet" new people to follow. Throughout the rest of the week, the #hcsm tag pops up from time to time on individual tweets that are related to the overall topic of healthcare and social media, so at any time a search for the tag is sure to turn up something worth reading. In the spirit of the #hcsm chat, today's blog post covers a range of 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.comVictor 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. 


31 October 2011

Output vs. Input

Hello? It is very quiet and still here tonight. 
It feels as though there has been too much output with too little input. 
There is a need for something fabulous to occur. *glitter* 
Instead, it is becoming winter. 
We turn inward. 

What will our frosty reflections bring about? 
Can hot chocolate soothe a soul to release its secrets? 
Everything I have told is too much, but it is not yet enough.

What if we all went silent? 
What if we refused to tell our stories? 
What if there were no stories to tell? 
We would cease to communicate.
We would stop being human. 

It would be so easy to fail to mark the passage of time with ceremony.
We could pass from one day to the next unfettered. 
Our sense of loss only comes in retrospect.
Like looking out on an empty driveway after company has gone.
We turn away.

How are we so alone yet all together?
Can we accept what we are given?
Everything I have told is too much, but it is not yet enough. 



(hat tip to Douglas Coupland, Microserfs, and the mind dump)

27 October 2011

To Flow As Water Does

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

The problem is that as a culture we have grown to associate death with an end, with a loss, with grief, with pain. How would our relationship with death change if we could realign our perspective so that death is viewed simply a transition? Death is what is supposed to happen. It is natural. It is—depending on one's spiritual views—just another life event. If we talked about death more, would we be so scared of it?

There is a practice in psychology that involves addressing trauma by talking about it and by allowing the very feelings that one tries so hard to block out to be fully experienced. At first, the very idea of undergoing this process is terrifying and causes anxiety in a patient. A patient typically has spent great amounts of effort avoiding everything related to the trauma—sights, smells, 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.  

22 October 2011

Not Cool, Man... Not Cool

It is 2:42 a.m. I am awake because there is something wrong with my butt. I know exactly what is wrong; however, I do not yet know the extent. The problem—and I CAN'T BELIEVE I'm telling you this—is that I have a cyst.

I happen to sit down a lot. I sit down a lot because I'm tired a lot because I've had a whole boatload of other health problems. I spend a ridiculous amount of time on the computer, and that requires sitting down a lot. I sit in these weird smushed up, twisted up positions, which apparently isn't good for the skin back/down there. From all I can figure, I have traumatized the skin, which has led to the current situation. I also have a very shapely booty. Apparently, shapely booty-ism can be a contributing factor.

I am mortified

Also, I feel kind of crappy. Today was the third day of waking up feeling pukey and self-medicating with Pepto and Protonics. I think I might have a bit of a fever. My back hurts, and it's been hurting for so long that I can't remember it not hurting. At least some of my back pain originates from the fact that my L4 and L5 vertebrae are off kilter. Last month, I turned to a chiropractor out of sheer desperation when I could no longer put on my underwear without propping up against either the bed or the dresser and groaning onerously. The chiropractor has helped some, though I admit that I am always skeptical of the practice and that my ten minute appointments, marked by loudly banging drop tables and gentle prodding, often feel like eating rice cakes—unsatisfying. However, the pain in my back is a dull ache that spreads into my buttocks. I have convinced myself that my cyst has grown to epic proportions, and when I go to the doctor, he or she will tell me that I need to have the majority of my butt removed, which is what seems to be the classic treatment according to The Internet. 

That's the problem with The Internet. The Internet provides information, yet typically does not put that information into context and typically exudes an alarmist nature. If we all believed what we read on The Internet, we would all be about to die of some absolutely horrible disease. Forum contributors share horror stories on what seems like a 9 to 1 ratio, which makes sense in regards to human nature—because few ever feel compelled to write, "I had this thing. It was treated. No big deal. Now I'm fine." Instead there are postings replete with failures to administer adequate pain medication, slow healing, terrifying side effects, and sometimes even pictures of profound disfigurement. I know. I've been reading these posts for the past three hours—and that's just in relation to the current medical situation at hand. 

I've spent enumerable hours reading about my other conditions including stroke, brain aneurysm, fibromuscular dysplasia, and gastric rupture. I read and research not because I am a hypochondriac—I've got enough stuff that's actually wrong to worry about what "might" be wrong. I read and research because I am a person who functions better when I have lots of information. I like to understand the history of a disease, it's epidemiology, it's treatments. Understanding diseases from a scientific perspective helps me get a handle on them from an emotional perspective. The human body is a truly fascinating thing, and if patients can get beyond the fact that fascinating (and sometimes terrifying) things are happening to their own body, then an illness is a wonderful chance to engage the brain and learn something new. Since being diagnosed with intimal fibromuscular dysplasia and tested for overlapping connective tissue disorders, I have become very interested in the endothelial cell. Knowing more about the endothelial cell probably will never help me unless I'm on Jeopardy, but it helps me help myself. Science takes away feelings of having bad luck. Science explains disease processes for exactly what they biologically and chemically are. 

One need not be interested in science in order to seek out scientific information about disease. One need only be curious. Research has shown that patients turn to The Internet when they are sick; however, I am continually surprised by the number of patients with whom I interact who have not done any research at all. These such patients befuddle me. I do not understand them. I do not understand how they can so blindly and blithely go to see their doctors and fail to engage in their own healthcare. Nevertheless, an internet search of any given disease can and will turn up a plethora of information that ranges from extremely detailed medical research to full-on quackery. It can be difficult for patients who are not researchers by nature to differentiate what is real, sound medical information from that coming from Aunt Sally Jo's House of Cards and Ill-Advised Shams. Real medical information can be daunting. It's a bitch to read. Most of the words are terminology only used within the profession. However, patients can still learn from reading medical information, particularly if they take the time to look up terms and exercise their critical thinking skills. A good place to start one's journey into personal medical research is at healthfinder.gov, which includes an encyclopedia, free health tools, and more. Beyond that, patients should look toward sites that end with .org, .edu, or .gov. There are, of course, reputable sites with .com or .net endings; however, the big players at the medical table typically will be found in the .org, .edu, and .gov communities. Use some common sense. If one fears he or she has rabies and one finds a site recommending drinking three gallons of buttermilk and rubbing his or her skin with salt, one would do well to think that the deadly viral infection could use more aggressive and scientifically-based treatment. Homeopathic and alternative treatments absolutely have a role in medical care. I am a fan of aromatherapy—peppermint for nausea, lavender for stress—and have had great results with acupuncture. I turn to chamomile tea before I reach for chemical sleeping aids. I've found yoga and massage to help relieve muscle pain. But if I break my arm, I'm not about to go chew some tree bark and forget about it. 

My discovery of a small pit in my sacrum occurred a few weeks ago; however, I dismissed it as some sort of run-of-the-mill boo boo. The second time it made itself known, I had my duty-bound husband investigate the area. He found nothing much cause for alarm. This evening, discomfort led to another investigation, and carefully chosen Google terms quickly led to the cyst's diagnosis. It seems that the area needs to be incised at the very least, and at the worse... well, I'm not going to talk about the worst. The beauty of The Internet is that it is available 24/7, so my restless mind was able to pour over several sites' worth of information, including one truly wonderful patient driven site, consequently working itself in a real lather. Thankfully, 2:30 a.m. on the East Coast is only 10:30 p.m on the West Coast, and one of my doctor friends on Twitter was still awake and able to provide a bit of advice—go to a doctor but not urgent care; instead I need a surgeon. I am decidedly not thrilled about this entire scenario, but to find someone knowledgeable, who actually has had the same problem before, to provide a bit of comfort at 2:30 a.m. is wonderful. That's another bit of beauty about The Internet—it and everyone on it is there for you when there's something wrong with your butt.

19 October 2011

Rethink Your ROI—Addendum

After Chris Boyer read my blog post, he felt that I had mis-characterized his tweets to prove a point. He posted a comment to say exactly that (see below) and tweeted it. Never one to let sleeping dogs lie, I tweeted back that I took exception to use of the word mis-characterization as it implies intent—and frankly, I'm not stupid enough try to slander or prove wrong the Director of Digital Marketing & Communications for Inova Health System and a member of the Mayo Clinic Social Media Advisory Board. I am but a wee blogger and ePatient. My network and scope of influence is, to steal a term, 1G. Boyer's is 5G+. Boyer presented at the social media conference at the Mayo Clinic (#mayoragan) today about the exact topic that came under discussion during the aforementioned #hcsm chat—ROI. Apparently, the packed house ate it up, loved it, downloaded it, quoted it, and in the end, sang along to it because Boyer did a little ditty on the ukulele. I didn't get to see or hear any of it. I was home following along on the Twitter feed singing an extra piteous version of "Alllll byyy mysellllfff... don't wanna be allll by myyyyysellllffffffff" because as a patient and a blogger (and for extra pity—a teacher and a professional writer) I can not begin to afford to go to conferences like that at Mayo on my own accord. There are a bazillion other things I can not begin to afford—an iPad, a real vacation, someone to finish painting the bathroom, my medications—but I digress.

So I tweeted back to Boyer that I took exception with the implication of his use of "mis-characterization" and—for the record, I also take exception with his saying I "cherry-picked" out his tweets because it took a heck of a lot of time to go back through and piece together the relevant parts of the conversation without one of those handy Twitter transcripts, and I took pains to make it coherent, and no, I did not include everything that was said in the whole chat because it wouldn't have made sense to readers. For transparency's sake, there are screen shots of all of Boyer's tweets from the #hcsm chat during the time period in which the topic of ROI was discussed and during which I was part of that conversation. Boyer asked that I mention a tweet that came through after I'd left the conversation, which I am happy to do and which is this: "We should all strive to give the best care, have the best relationships and be fiscally sound with health care social media. Simple." In my tweet back to Boyer (really, it was only 140 characters) I said that perhaps his statements had been misperceived, and if so, how do we fix that—overall. 

Robert West, a medical faculty member at SUNY and Twitter personality, had seen my tweet about my blog post and responded, "Well-written post! Gr8 take-home message. Chris just needs to iron out some of the kinks in his communication platform. :)" I've followed West for a while now and think he has intelligent and thoughtful things to say, so I was please to receive these words from him. "It's all about having the discussion and approaching the problem from several perspectives. Thx for your kind words," I replied. West tweeted back, "Agree. And you made a valuable contribution to the #hcsm community." Awesome, right? So I was more than a little confused when Boyer and West seemed to switch stances. West replied back to Boyer's "mis-characterization" tweet, saying "though points raised were very good, I give u benefit of the doubt" and then Boyer wrote back to me and West saying,"I liked your post, and agree with you. My point is the term 'ROI' should only be used for financial conversations." 

Is that enough he said/she said?

My point is this: I generally stay away from having opinions. It is my belief that one should only hold—or at least voice—an opinion about things that one is truly educated enough about to explain an opinion without using TV clips of talking heads as a reference or the phrase "one time I read an article about..." Unfortunately, most of the general public doesn't share this belief with me, which is why everyone over 18 gets to vote and why, generally speaking, our critical thinking skills have gone to hell in a handbasket. Since I refuse to argue an opinion on things I know little about, that means that I am wonderfully interested in a thoughtful debate and will happily take in all sides because in the process, I am learning more, and learning more is always good. There are some things though that I know enough about to take sides on—mayonnaise is gross on French fries, the Cubs will never win the World Series, dead Christmas trees make wonderful, if not quick, New Year's Eve entertainment, outdoor showers are neat, and me. I know about me. I know how I feel. 

So when the participants at the Mayo Clinic social media conference were tweeting their way through Boyer's talk and when I saw the tweet quoting Boyer about calculating the value of a patient over time all I can say is this—my heart sunk. 

Disclaimer: Boyer is not evil. Boyer just likes math. 

Boyer is, as I have come to realize, a cog in the machine. He genuinely likes numbers. One of the tweets that came across today from his presentation at Mayo quoted him as saying that everything can be measured and he even kept track of how many downloads there were of his handy ROI worksheet (65). For Boyer, it seems measurement is akin to godliness in that if something can be measured it can be neatly and succinctly broken down into little parts and studied. It can be made to make sense. It will be logical. It will be right or it will be wrong. End of story. Granted, we need people for whom the world is so perfectly parsed. I am not one of those people. I do not ever want to be one of those people. I am the person who is given a set of rules and (nearly) immediately throws the rules out the window. Rules are too stiff of a structure to define my life. Nothing about my life has followed the rules. 

Here's the part where I over-emote and over-share:

If rules worked, I wouldn't be 31-years-old and working part-time because I lost my job when I had a stroke at age 28. If rules worked, I wouldn't be finishing a master's degree with no hope of a promotion or a raise. If rules worked, I wouldn't be one of the extreme few diagnosed with intimal fibromuscular dysplasia, which has no treatment and no cure. If rules worked, all my hard work would have paid off with something more than eeking out a living in a town that my husband and I can't afford to leave. In order to survive, in order to eek out this living, I have had to be fluid. I have had to respond to events as they happen. I have had to watch plans suddenly dissolve into thin air. I have had to readjust everything that I thought would be part of my future. 

I do not say this to complain. I say this to shed light, to be transparent, to perhaps help others who are struggling to cope. I learned to be fluid. I learned to stop keeping track. I learned to let go. I learned to let the path meander. If I attempted to calculate all that I have lost versus all that I have gained, I feel it would be impossible. How can one calculate the cost of lost time, lost potential of a human soul? How can one calculate how that soul has grown as a result of those losses? I lament what has gone. I cherish what has developed. No part of that is clean, neat, and logical, and anyone who tries to say that it does may as well go ahead and share with us the formula for love as well. 

While loss and life and love is not at all what Boyer is talking about when he crunches the ROI numbers, it is what I, as a patient, feel deep in my nauseated stomach and tight in the center of my chest and flushed on the span of my cheeks. Give me a number for that. When it is late and I am alone and I am terrified that I will not have the time, the life to finish the things I feel I must do, give me a number for that. When a friend or a doctor reaches out through a social network to provide some sense of solace  and the Tweet isn't reTweeted, and the blog comment isn't seen by anyone else, and the Facebook post only gets clicked on once, give me a number for that. Maybe I can add all these numbers together and they will increase my value as a patient because I am worried about what happens when a patient's value runs out.