24 December 2012

Mixed Emotions—A Christmas Story

When I'm in the kitchen, nothing else exists. There's no stress, no deadlines, no illness, no worry. I commune with pot and spoon and liken my seasoning and stirring to an indoor form of gardening—cheaper than therapy and resulting in good things to eat.

Unlike therapy, when my soul calls out in the dark hours, cooking and gardening don't keep office hours. There's an old R.E.M. song that I can't help but sing when I'm out pulling weeds by the light of the moon, "Though all the feelings that broke through that door/ Just didn't seem to be too real/ The yard is nothing but a fence, the sun just hurts my eyes/ Somewhere it must be time for penitence... Gardening at night..." Brutal cold and whipping winds made gardening impossible Friday night, so instead, I set about baking. Three runs of scones came together as amalgamations of flour, sugar, and half and half. I used my grandmother's cookie cutters to give them shape—candied ginger and coconut diamonds, lemon and cranberry trees, and spicy fruited hearts.

Adorned with a dusting flour—it was after all all-purpose—I curled up on the couch while my scones cooled. The house was warm and smelled of sweetness as the Christmas tree twinkled and the dog on his bed twitched with muffled dreaming barks. It was about this time three years ago that an interventional radiologist was noodling around in my brain's vasculature, weaving a tiny basket of platinum wire into each of three aneurysms. I remember being in the neuro ICU and the nurses there enjoying having an interactive patient—apparently most in the neuro ICU aren't quite so awake and cognizant. I remember having a bit of headache for which they offered me some Tylenol, which didn't quite cut it, so they gave me Vicodin. I remember needing to pee, which given my mobility presented a bit of a quandary as nothing about my glass-walled room's toilet was private, thus a well-placed hovering mom helped to at least moderately preserve my dignity. I remember being given something to eat, which Mom helped feed a tiring me.

Days slipped past, and the next thing I remember is Christmas Eve. My husband and I held Christmas Eve dinner at our new home the first two years we were there. Per tradition from my father's Polish-Czech family, Christmas Eve was the time to gather for a multi-course meal including pea soup, pierogi, and kraut. We cracked walnuts to determine the disposition of the coming year, and all the women were dotted with honey on their forehead to keep them sweet all year long. Though we weren't overly fussy about it, the gathering was still a major to do that brought my family and my husband's family together with two tables for the adults in the dining room and one for the kids in the adjacent living room. I had broken out the inherited family silver, donned an apron, and pan-fried six dozen pierogi. I relished having been transferred the role of kitchen matriarch.

The third year—the aneurysm year—the role was stripped away, as I was allowed to do little post-surgery. There was no large family gathering. There was no formal dinner. My mother and father came over to our house to visit. I sat on the floor by our Christmas tree and scooted presents to Mom, Dad, and my husband. I'd asked for a simple gemstone bracelet, a request which my husband had obliged. There was a book and a CD and a few things from Mom and Dad. And though thankful simply to be alive, I was self-conscious when I noticed a feeling of deflation, of disappointment. What I wanted...what I'd hinted at to the point of being absolutely annoying... what even my friends had nagged my husband about... was a KitchenAid stand mixer. But there were the facts of the matter... the mixers were expensive, and we'd had a less than stellar financial year. And while the KitchenAid made my heart go pitter patter, I had told my husband that we needed to be reasonable, that I knew he would give me anything and everything in the world if he could. I didn't expect to be so disheartened when he actually listened to me.

My husband apologized that I didn't have more gifts to open and then walked away. I continued to sit on the floor and tried not to dwell on my feelings of missing Christmas magic—the surgery, the family dinner foregone, and the predicament of getting—and thereby not getting—exactly what I'd asked for. My mom crumpled up scattered wrapping paper. I heard a door open and close. The wooden floorboards squeaked as they always did as my husband walked back into the living room. He was carrying a big rectangle box and grinning. I blinked, shook my head, and smiled bemusedly. My husband put the box on the floor and said softly, "I think you know what this is." Still blinking, I cocked my head, looked at the wrapped box, and back up at him. He grinned again. I peeled off the paper to find what I'd been coveting—and it was shiny, and it was red. 

I was at once thrilled and embarrassed. "Travis...," I said in a small voice thankful yet admonishing. He raised his eyebrows slightly. "I got it on sale the day after Thanksgiving," he said. It turned out that my friend who had done the most cajoling on my behalf actually knew my husband's plan all along. The ruse was a team effort. And it worked. I wasn't allowed to do any cooking yet, so I could only admire my mixer from afar. Yet it was with my husband that I was truly impressed. My husband hadn't just given me a "thing." He had given me something to remember.

It's funny how life is so circular. This Christmas' candied ginger and coconut diamonds, lemon and cranberry trees, and spicy fruited hearts were made based on a recipe from a favorite holiday cookbook I was gifted years before I was married and mixed with the sturdy beater of the stand mixer that never leaves my kitchen counter. So many times that mixer has beaten back bad feelings as well as it beats eggs, but the best reward is the old-fashioned way of finding my way to my husband's heart through his stomach. 

This holiday season, I wish everyone joy. I wish everyone magic. I wish everyone a shiny red KitchenAid mixer. But most of all, I wish everyone love.

04 December 2012

No, You Kiss My...

According to the results of 10 patient surveys conducted by HealthGrades.com, Dr. Larry M. Greenbaum's patient satisfaction marks are below the national average. A board-certified rheumatologist who graduated from SUNY Downstate Medical Center in 1984 and did both his internship and residency at Winthrop University, Greenbaum has been with Indiana Internal Medicine Consultants in Greenwood, IN since 1993.

His practice's office staff seems fine enough. For the ease of appointment scheduling, office environment and office friendliness the survey indicates that patients find these services to be "good" or, just marginally, "very good." But when it comes to wait time, things don't look so good. HealthGrades.com shows that patients are reporting a 16 to 30 minute wait while the national average is 10 to 15.

Perhaps patients spend this extra time waiting doing a bit of personal reflecting. Rather than reading old magazines, cleaning out their purses or checking their voicemail, the patients dwell on persistently aching hips, a recurring rash or the crippling joint pain of rheumatoid arthritis.

One such patient was a 75-year-old man in for his first appointment. Diagnosed with rheumatoid arthritis for about a year and half, the man was struggling to adjust to his treatment's side effects. Greenbaum describes the case in his article "Kiss My ...," which appeared online in Rheumatology News on Nov. 30, 2012.

"When his treatment commenced with 20 mg of prednisone a day, he felt like 'Superman,' but by the time he was down to 2 mg a day, he felt as if he had been 'hit by a truck'," Greenbaum writes. "He claimed that an arthrocentesis by his first rheumatologist caused his left index finger MCP joint to permanently dislocate the day after the procedure. 'He took too much out,' he complained. He was on methotrexate, but he was dreadfully worried about dire side effects. A recent string of sinus infections were clearly due to his medications, in his opinion. He didn’t think that his long history of smoking could possibly have contributed to his problems."

Greenbaum's condescension is clear as he mocks the man's attempts to describe his condition and its effects on his life. The man—like most patients—did not use medical terminology. He spoke in the manner to which he was accustomed. He related his story from his perspective, illustrating the tenant of cognitive behavior therapy that an event does not cause our emotions, rather how we perceive an event and what meaning we give to it thereby defines it.

Greenbaum defines his own philosophy of care. "Trying to keep the mood light, I used one of my favorite quips: 'If all else fails, examine the patient,'" he writes.

Greenbaum's "quip" is not amusing; however, it is certainly enlightening—only when lab results and a headful of institutional knowledge fail to produce a solution, should a doctor deign to rely on information given by the patient—the person—who actually has experience living with the condition and living with the condition under the specific circumstances of being himself. It's a belief as antiquated as using a mallet to the head for anesthesia. It is an affront to the concept of patient-centered care. It is a failure to care at all. 

Of course, caring doesn't seem to be what Greenbaum's in it for. 

"If your practice is like mine, you probably don’t bill for 'consult level 5' very often," Greenbaum writes. "That is the most expensive level of care on our office superbill, and I usually reserve it for patients with huge volumes of records, patients who take an inordinate amount of time, or patients who annoy me in some other extraordinary fashion.

The 75-year-old man with rheumatoid arthritis whom I’m describing, didn’t bring many records, but I spent a very memorable hour with him. I charged him level 5 for taking so much of my time, for bad-mouthing his previous doctors, and for incessant whining."

Assuming the patient is enrolled in Medicare, Greenbaum's indication of a "consult level 5" reflects code 99205. E/M University is run by Peter R. Jensen, MD, CPC a practicing physician and certified professional coder who practices in Connecticut and is Director of E/M Compliance for the Yale-New Haven Hospitalist Service. E/M University refers to code 99205 as such: "This is the big daddy. The 99205 represents the highest level of care for new patients seen in the office... The reimbursement for this level of care is approximately $197, which is pretty good. Usually the problems are of moderate to high severity." In 2011, code 99205 was $154.98 more than the most basic new patient office visit code 99201, according to the American College of Rheumatology's National Medicare Fee Schedule. Three sources of documentation are required for this code 99205—comprehensive history, comprehensive exam, and high complexity medical-decision making—or 60 minutes of time spent face-to-face, with proper documentation. Therein lies the loophole that allows Greenbaum, and doctors like him, to apply this code to those patients whose worst offense is to require a doctor's time or, as Greenbaum puts it, "patients who annoy me in some other extraordinary fashion." 

Other patients who have seen Greenbaum may have in turn been equally annoyed as HealthGrades.com's 10 patient surveys score the doctor well below the national average with a solid "not sure" in response to all of the following questions: "Do you trust your provider to make decisions / recommendations that are in your best interests? Does the provider help you understand your medical condition(s)? Does the provider listen to you and answer your questions? Do you feel the provider spends an appropriate amount of time with you?" And finally, "Would you recommend Dr. Greenbaum to family and friends?"

I am sure. Even though I've never been one of Dr. Greenbaum's patients, I also never will be.

__________

Look for RA patient and health advocate HurtBlogger's post regarding Dr. Larry M. Greenbaum's article "Kiss My ..." later this week for which Greenbaum has been contacted. Visit www.thehurtblogger.com

27 November 2012

French Revolution

It was something I said that broke the rank and file of emotion. Something about reliability. Her head bowed over her breakfast bowl of oatmeal and berries. There was a pause, and then... tears. I sucked in my breath. Sunlight, missing for the past two days, streamed in the hotel restaurant's dining room. I snatched my napkin from off my lap and deposited it on my empty plate, rose and turned to unleash my purse strap from the back of my chair, lifting it over my head and down to rest on one shoulder, its weight at my hip, weapon-like. We marched single-file and tight-lipped past the black-clad waiters and waitresses who smiled as a reflex.

She cried. She cried the tears that are squeezed from the inner-most chambers of the heart. Her personal war story was one of many battles—diagnosis and remission, diagnosis and remission, diagnosis and remission, with life laying siege each time in between. Though her arena differed from our own, the language of the campaign was so much the same. Fear. Loss. Trust. Loss. Hope. Loss. Fatigue. Loss.

With survival comes a lamentation for the life that was lost. There lies such great grief in the hearts that lead our campaign of change. We patients, we involuntary band of brothers, were enlisted by this army as cannon fodder. But we were not taken down. Wounded yet emboldened by experience, we rose to build our own armies, wiped tears from our blood- and grease-covered faces, pounded our fists against our chests and cried out, "Action conquers fear." It is only from being torn apart that we are given the means to heal.

Each fortress of healthcare's status quo shows chinks in the wall through which we speak, at first a whisper, and then a yell—patients included, patient-centered, empowered, engaged, enabled. We scale walls. We break open doors. We recruit those inside. And thus our army grows.

We fight not to destroy but to reconstruct. My own weapons are words. I wield stories to cleave the heart in two and the head apart from its routine course of judgment. Each patient who tells his or story thus has chosen to take up his or her arms and fight. Like me. Like she. Like we.

22 November 2012

Just Like Me

The radio announcer's voice, mellow and moderated, speaks of a study Stanford researchers are conducting regarding post traumatic stress disorder and coping mechanisms. A group of patients, veterans young and old, of wars long-past and current, have gathered in Menlo Park, California where they focus in on meditation expert Leah Weiss's directions, issued in a voice equally mellow and moderated, to slowly take three deep breaths—in through the nose, out through the mouth.

Weiss has been leading these guided meditations for more than a year now. She directs the men to think of a person they care about, a family member or a friend, and to bring that person close to them. "Allow yourself to feel the presence of this person," she says. This alone is an exercise in will. These soldiers, though no longer in combat, still bear the marks of their training—the heightened sense of alert that any person at any time may represent a threat. Thus, in the civilian world, making friendships and holding intimate relationships has become difficult. There is a self-imposed distance. Through meditation, the soldiers challenge themselves to close that gap. As they each visualize their chosen family member or friend, Weiss intones the soldiers' meditation mantra, "That person is just like me." Whomever that person may be, Weiss says, "Consider that, just like me, this person's had ups and downs in his or her life. Just like me, this person's had goals and dreams."

"Just like me." It's a phrase that we typically reserve for a select few. As a society, we like labels. We are drawn to parse data, divide friends from foes, black from white, rich from poor, educated to uneducated, increment by increment separating ourselves from others. Only when we have delineated the population, chosen who we feel to mirror our circumstances, experiences, interests and values, do we finally issue with great aplomb the discerning decree, "That person is just like me." But these veteran soldiers are learning how to think otherwise and bring empathy and compassion back to their sense of humanity. "The idea, of you saying, 'just like me,' that does a lot for me in a sense because I know how I'd like to be treated or how I want to feel," says one of the Vietnam vets.

His observation echoes The Golden Rule—do unto others as you would have them do unto you. It seems so simple. Yet time and again we forget, or worse, chose to do otherwise. It must not take the suffering of a trauma and the retraining of our subconscious to see that people of all kinds are "just like me" and that we are just (only) people. We will receive only what we are willing to give.

30 October 2012

Six Degrees of Separation From Caring

I was in a Wal-Mart parking lot in Goose Creek, S.C. when my cell phone rang. It was my roommate from my sophomore year in college, Natalie. We hadn't seen much of one another over the past three years as her study abroad and my graduation a year before her had put literal and figurative distance between us. It stuck me as a bit odd that she was calling out of the blue and even more odd that she was crying.

"I don't know how to tell you this... Gianni was in Bali," she said. 

The statement seemed incomplete. Gianni was my ex-boyfriend. He was from Switzerland. We met at the start of the year, as Natalie, a freshman, was dating Gianni's best friend Gian who was the son of one of her father's business contacts. Gian came from Switzerland to visit Natalie. Gianni, working in Chicago, came down to see Gian. Gianni and I found ourselves often shut out of the dorm room, so spent hours sitting out on the stairwell talking. Just before he left, we traded numbers, but he was due to return to Switzerland in only two weeks time. I didn't think much about any possibilities; however, we talked for hours by phone for each of the five nights following. On the sixth night he called and said, "I've just booked a ticket from Chicago to come see you. I hope that's okay." Four of his last five days in America were spent with me.

Gifted with Frequent Flyer miles and a mother with a romantic heart, I travelled to Switzerland that Christmas break. Natalie was supposed to go with me, but she and Gian hadn't lasted. I flew into Milan, spent the night at Gianni's family's vacation home in Northern Italy before winding through the Alps to his tiny village where I learned to snowboard, ate real fondue, and unwrapped presents around a tree lit with candles. Gianni's family spoke Romansch, one of four national language in Switzerland, derived from Latin and French, yet still not close enough to French to allow me to have any clue of what was being said around me. Thankfully, Gianni spoke seven languages to varying degrees, though his English—honed in Chicago—born a mid-western Yankee accent, while his brother, who studied in Australia, sounded decidedly different. Gianni's sister was kind and knew enough English to help me when I appeared completely lost, but Gianni's cousin—whose English was better than my German—refused to speak to me in anything other than French, which we both had only a moderate command of but nonetheless used to discuss Gaudi architecture while in a snowboarders bar in Davos. It was all very international and chic. Gianni's friends told me that they'd never seen him be as serious about a girl as he was with me. We rang in the year 2000 at a giant bash in Tschierv, hung out in St. Moritz watching fireworks over the lake, wound down the trip with Gianni's return to work with a economics group associated with the University of St. Gallen, and I flew out of Zurich under the watchful eye of guards armed with AK-47s.

Unfortunately, I proved not to be much good at a Transatlantic relationship. There was much back and forth, too many words taken out of context via online chats, and not enough time together. Gianni went to India for work—we were living entirely separate lives. He was able to visit in May for a family beach trip, but by June we were no longer together. It had been a good run. I had a grand story to tell. Gianni, I knew, would continue to travel the world, there was even talk of going back to India. 

When Natalie called two years later, nothing made sense. "Gianni was in Bali," she said. I blinked at the rows of cars lining the asphalt parking lot and was silent. "OK... I don't know what that means," I replied. Natalie's voice cracked, "Haven't you seen the news?" I hadn't. My association with Bali was that it was a pretty nice place to be. Natalie explained there had been a bombing at a nightclub. There were many casualties. Gianni had been there with a friend. The friend escaped but rescuers couldn't even find Gianni's body. There was nothing to confirm his death other than the circumstances of time, and place, and the fact that there was nothing left to bury. 

The bombing, which occurred on Oct. 12, 2002, was the deadliest act of terrorism in Indonesia's history, killing 202 and injuring another 240. Members of the Jemaah Islamiyah group, a violent Islamic group, were convicted in the killings that included a car bomb, a suicide bomber with a backpack bomb, and a smaller bomb outside the U.S. consulate in Denpasar. It has been reported that via tape recording, Osama Bin Laden stated the attacks were the direct result for support of the United States' war on terror and Australia's role in liberating East Timor.  

At first, I had no emotion. I was hollow. I was confused. And then, I was guilty. If we hadn't broken up, Gianni wouldn't have been in Bali. At least, that's what I told myself. My self-blame was a delusion of control. As if I could have prognosticated two years into the future... As if in that two years' time we would have remained a couple... As the militant hatred of a terrorist leader never existed... As if the flutter of a butterfly's wings had no effect...

I followed the story for years—through the naming of victims, through the funerals, through the investigations and arrests, to the eventual death sentences for three of the group's leaders. It was all I could do. The Swiss government had given Gianni a state funeral, even though there wasn't a body. I didn't go. I didn't call. I didn't send a card. I was just the ex-girlfriend. I didn't want to intrude. But at the same time I wondered if they would blame me too—that silly American girl... if only she hadn't broken up with him, none of this would have happened. My acceptance of blame was the closest I could come to willing the situation to change.

There were, of course in America, no yellow ribbons. There were no candle light vigils or memorial services. Six degrees of separation seemed to fail me, and I felt exceedingly alone in my mourning for this act of terror halfway around the world. The deaths were unimportant. They did not effect us — the U.S. of us — and therefore they did not exist. The headlines came and went with little to do. And people moved on. And people forgot. 

Such is our way in times of crisis. We who are not directly affected may turn a blind eye. We may keep going. We may carry on while others are burdened and broken. The fact of the matter is that we can not be everything to everyone all the time. We can not individually reach out our hand to every other hand in need. But where is the line? When do we get involved and when do we determine that it is not our burden to carry? How will our decisions affect the decisions of those in the future when we find ourselves to be the ones in need? We are our brother's keeper only to the extent we wish our brother to keep us. 

I can't help but still look for Gianni. In large crowds, in foreign cities, on public transportation, I imagine that I will see his face, and that after all these years, he will have only been suffering from amnesia. Unsure of his own identity, he will need only to be recognized, and that I will be able to do the one thing that no one else has been able to do... give his mother back her eldest son.


(Written with thoughts of Aldon Hynes and family who lost one of their own in Hurricane Sandy.)

22 October 2012

Bucket List Redux

It's been sixteen months since I began putting together my bucket list. It's a list that I harbor in the back of my mind, sometimes as a source of inspiration, sometimes as a nagging burden, as I ask myself, "What am I doing today to cross something off my list?"

All too often the answer comes back as, "Nothing." I can't help but feel that I am dawdling, that I've grown complacent in my sense of time and purpose. However, looking back on my list, there are so many things that I have done within the sixteen months since first putting the list together that I never would have thought to put on the list—but in retrospect could have, had I known they were even possible.

I am reminded of Errol Morris' New York Time's column, "The Anosognosic’s Dilemma: Something’s Wrong but You’ll Never Know What It Is," which references Donald Rumsfeld's rather infamous quote from a 2002 NATO press conference, “There are known unknowns. That is to say, there are things we now know we don’t know. But there are also unknown unknowns. These are the things we do not know we don’t know.” Give Rumsfeld all the grief you will, his statement is factual, astute, and characterized by the type of self-aware honesty that too few of us hold—there are things we know, there are things that we know we don't know, and there are things that are so far outside our frame of reference that we don't even know that we don't know them.

Sixteen months ago, I was a writer who also had an extensive history as a patient. I knew I had some knowledge to share. I knew I wanted to help others navigate the patient experience. I didn't know what an ePatient was, let alone that I was one. I didn't know that there was an entire world of social media dedicated to healthcare. I didn't know that my ideas, my opinions, my words would take me 5,596.5 miles from Palo Alto to Paris, to HealthCamp DC the Kaiser Permanente Center for Total Health in Washington, D.C., to Kansas City, M.O. and Cerner's riverside educational facility for Regina Holliday's Partnership With Patients Summit. I didn't know I would find others who care deeply about talking about advance planning and facing our fears of death with a whole heart and an open heart. I didn't know I would meet people who would be more than mentors—but friends. I didn't know that what would be the most significant part of my life's work had yet to reveal itself.

In retrospect, my bucket list thereby seems naive. What should I make of the fact that I have accomplished so many great things that were not on the list and yet many of things that are on the list still need to be done—while others need be removed for they are no longer something I desire? Indeed the list is of my own creation, and I am the only one to whom I am beholden. Yet I can not help but think that we can not successfully force our hearts to be linear creatures. We must balance that which we (think we) know that we want with that which we do not yet know that we want. We must live with passion and pursue happiness in a way that gives meaning to our life.


The Bucket List Redux

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 — 2013

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 — 2013

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

17. Go to Whiting, Indiana’s Pierogi Festival (July) — 2013

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 — DONE/DOING

23. Participate in research to help with the diagnosis of my disease — DONE/DOING

24. Help teach other patients to be proactive and involved in their healthcare — DONE/DOING

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

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

27. STRICKEN FROM LIST

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

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

30. See the Grand Canyon — DONE

31. Develop a running list of National Parks visited and continue to add to that list including Yosemite, Yellowstone, Bryce Canyon, Zion, Arches

32. See Beck in concert

... more to come!

13 October 2012

Lungs Like a Sponge - or - Lower Lobe Overthrown

Post-surgery, there was fluid on my lungs. They'd already threatened me with the administration of Lasix, a diuretic drug that for some reason greatly disagreed with my stomach, if I didn't make more use of my spirometer.

I hated spirometers. I'd hated them since four years prior when an eight-hour surgery led to fluid collection on my left lung. Every hour I was to suck deeply on the spirometer's mouthpiece for ten breaths, which measured my total lung capacity and tore at the limits of my swollen belly stitched together along the length of a fifteen-inch incision that traced the curves of my rib cage. Every hour I complained bitterly. Every hour my father told me to—rather appropriately—suck it up. I challenged him he could only continue to admonish me if he knew exactly what he was talking about and demanded that he perform the requisite ten breaths. A healthy lot, he consented, only going slightly cross-eyed and light-headed after the seventh or so breath. "That's hard," he said. "I know," I replied. We agreed to play spirometer gin—loser had to take ten breaths. Unfortunately, he was better at cards than me. 

Back in the hospital for a nephrectomy and once again with juicy lungs, the spirometer again became my nemesis. I could feel the wetness and hear the telltale rattle. I tried to cough but was unable to get much force behind it unless my belly was braced with a pillow, making it a two-person job. My husband held the pillow while I hacked and horked as much as possible into a wad of tissues. The sputum was pink. 

Eyes wide, I held out my hands offering the spattered tissues up as some kind of horrible prize. "Is that blood?" my husband asked. Terrified, I rang for the nurse. "Yes, may I help you?" asked the voice over the intercom. "I'm coughing up blood," I stated, my voice about an octave higher than normal. The nurse hurried in, looked at the tissues, and within moments a portable x-ray machine was perched over my bed, films shoved behind my back for exposure. The two technicians skuttled off with their machine and their images. The husband and I blinked nervously. The nurse appeared in the doorway. "Wait a minute. Didn't you eat a cherry popsicle an hour ago?" she asked. My face was blank. "Oh my gosh," I said. "Oh my gosh. Yes, I did. I am so sorry." Thankfully the nurse smiled, she appeared relieved rather than angry. "I'm so glad you thought of that," I said. Who knows what we would have thought had I eaten a grape one. 

Last week the month's extensive travel gave way to exhaustion immediately upon arriving home from the airport on Thursday. I slept solid until Saturday, joined my parents for pizza, and returned home to bed. Sunday brought a 102 degree fever with chills and chest congestion. Nevertheless, I failed to think it was much more than my run of the mill cold progression. I thought that surely I could hork out the brown and green evil that was in my lungs on my own. By Tuesday afternoon, I called my GP's office and left a miserable sounding message asking for advice. My doctor's assistant called back, took some more information, consulted with the doctor, and recommended I go to urgent care or the ER for a chest xray.  

It was sound advice that I didn't follow for another two days. To go would have meant a) leaving the house, b) choosing between the local urgent care in which I had only the mildest confidence or the region's major ER twenty minutes away, c) most likely getting a prescription for antibiotics, which I didn't want after having been on four courses in the past month already, or d) an expensive and time-consuming admission. Truthfully, none of my "logic" bore merit, and despite coughing up yellow sputum laced with red—I'd been drinking Crystal Light I said—I waited until I was exhausted and gasping for breath upon just the slightest exertion to go to urgent care. They took a chest xray. It revealed pneumonia of the right lower lobe. 

I'm back on antibiotics—and will be for the next eight days. My body is sore from coughing, and I wheeze like a kazoo. They say that even healthy people may feel a general malaise for up to a month, and so for now, I'm doing what I can to hold our home's large pieces of furniture in place by lying motionless on them for hours. The cats think this is fantastic. My spirometer is in the hall closet. Perhaps I should go use it. 

06 October 2012

"Tears can be easily misdiagnosed." A hurt blogger hurts back.

I don't remember how I met her—what hashtag or retweet sucked me in. I just remember the name—HurtBlogger. She'd named her condition Arthur (as in arthritis), liked the color orange, and didn't gloss over the grimy bits when it came to sharing what it was like to live as a chronic disease patient while still existing as a seemingly healthy, brilliant and funny young woman on the verge of getting married. We were cross-continent avatars, names without faces. And then, as all relationships are tend to do, it changed. I started looking for her tweets, keeping tabs on the arthritis flares, hospitalizations, and infusions.

It wasn't until I was standing in baggage claim at SFO on my way to Medicine X that I finally heard her voice. A tweet had come through asking, simply enough, if I would call her. Instantly, I suspected the problem—a family issue at home, once pressing, had become urgent. I tucked myself into a corner, dialed a strange number, and with a finger pressed into my ear waited. She was crying. Alone in a hotel room, she was torn and overwhelmed. There was no awkwardness between us as I did what little I could do. I told her not to worry about the conference, that whatever needed to happen would, that we would make it work. I asked her if she needed to go home. I said I would be there as soon as I could. 

The traffic from SFO to Palo Alto moved in starts and fits. Frustrated by my delay, I called for reinforcements, tapped into the ePatient band of brothers, asked one of my people already on site—a three-time breast cancer survivor—to become one of HurtBlogger's people until I could get there. There was no hesitation. The reply was, "Thank you for asking." Patients—people who the healthcare system has classified by diseases and treatments—are among the first to scratch out labels, push aside privacy curtains, and reach out to one another. We recognize in strangers what we have seen in ourselves—in our eyes, in our words, in our physical movements. We need not explain the enormity of the two-word phrase, "I'm tired." For that we are united, a band of warriors wearing the open-backed gown as our armor, carrying our resilience as our weapons.

A message came through. Mission accomplished. Situation improved. I arrived with just moments to spare before the evening's ePatient dinner. In the hotel lobby there were hugs all around as I was greeted by familiar faces and Twitter avatars become real live humans. Rather than walk or catch the first ride to the restaurant, I waited with a fellow rare disease patient. Diagnosed with cyroglobulinemia, she bundled herself against the cool Palo Alto air. By the time we arrived at dinner, conversation was in full swing. And so it was that I remained feeling a bit behind. Opportunities lost. Meetings missed. Acquaintances unmade. I could have, and should have, done so much more. 

One thing I didn't do was tweet HurtBlogger's speech. I couldn't. I was repeatedly swallowing my heart back into my chest. I didn't tell her I was proud of her. I sent it to her in a message. And I didn't stick around during the following break. I went to the bathroom, locked the stall door, and clutched my arms around my body as I heaved great racking sobs. I said to the ceiling tiles and to myself, "It just means so much." This thing, these things that we're doing, these experiences that we are sharing, these changes that we are demanding—they are the "it" that all means so much, almost too much because it is such that we must not fail. 

I allowed myself one minute and two tears. Any more would have made my eyes puffy and my emotions would be given away. I walked to the sink, washed my hands, and blew my nose. "Are you OK?" asked a fellow ePatient walking in the door. "Britt's speech made me cry too." I smiled widely from behind my paper towel, gave my nose one more rub, and walked out the door. 

In the next few hours as Medicine X drew to a close, I engaged in a closed door meeting to set in motion planning for next year's ePatient program at Medicine X; a quick conversation with Kevin Clauson in the wings to stir interest in banding together a patient, an academic, and a clinical innovation team; and an impromptu stage appearance with fellow ePatients about our experience at the world-class design firm IDEO. I hugged goodbyes, told @AngryT2Diabetic to stay out of trouble (though perhaps I should have said to stay in trouble), accepted a white gerber daisy as a parting gift, and walked alone, past the retro exterior of Stanford's medical school, past the emergency room, back into the real world. 

We must never measure our impact by only the things we see, though we may measure others' by what we are made to feel.

24 September 2012

The Ethics of Pharma-Patient Relationships

It was fortuitous timing this week when I received an email from Denise Sibler, head of Basil Strategies and coordinator of the Doctors 2.0 & You conference in Paris, asking my opinion on the issue of ethics in patient-pharma relations.

"I can't identify a time when I wasn't interested in the ethical issues of health care and one of them is the pharma-patient relationship," Sibler said. "With the rise of the ePatient, many interactions and relations become possible, so new questions have arisen."

I'd just come from HealthCamp Kansas City where myself and three other patients were fortunate to be able to participate in a conversation with members of Eli Lilly's Open Innovation Team. Team members were seeking input on how to improve the clinical trial process by crowdsourcing ideas. Their focus was not simply on R&D but on the patient experience. Overall, the patient group's suggestions echoed those I heard during a similar conversation with a representative from Pfizer while at HealthCamp DC in June regarding increasing patient participation in clinical trials—share the data and show patients their involvement matters. It is never unethical to have a conversation. Only through open dialogue can we begin to understand one another's view points, and that goes for the relationship between pharma and patients as well.

Patients enter trials not simply for themselves but to help others with their disease and advance scientific discoveries. Patients consequently should be allowed to learn along with researchers. What information about a patient is learned during the course of a trial should be shared with the patient—good or bad. If a trial succeeds, patients should be informed of the immediate results and continued to be kept aware of the long-term impacts of the trial. When a trial fails, patients should be informed as to the reasons why and how those reasons will play into future trials in terms of revamping, improving, or altogether abandoning a treatment or device.

The issue is, at its heart, one of transparency. Patients are not stupid. Anyone familiar with the scientific method knows that a hypothesis must be tested before a conclusion can be reached and there are inherent risks in the process. Testing a hypothesis results in a certain degree of failure; however, a conclusion always is reached, and therefore failure to prove a hypothesis is not a failure to learn. We incorporate our gained knowledge into the development of a new hypothesis, and go on to the next phase of testing.

As for what is not ethical, my opinion is highly influenced by my personal needs. Historically there has been little market to motivate pharma to invest in developing drugs to treat rare diseases. Small patient populations don't haven't had the ROI of drug development for alzheimer's or diabetes. Changes are happening in this field. A May 2, 2012 report from Forbes states, "A great example is Genzyme’s Cerezyme for the treatment of Gaucher disease, a genetic disorder that impacts organ function. Cerezyme is extremely effective – but it is also extremely expensive with annual treatment costs as high as $300,000/patient. As a result of this high price, Cerezyme’s 2010 sales were over $700 million – a respectable number for any drug." Such changes don't give me any sense of hope for a treatment within my lifetime. How pharma could potentially address this disparity is by developing off-label uses for existing drugs with clinical trials involving similar diseases and targeting patients' chief symptomatic complaints—pain, nausea, headaches, etc. For many patients, being able to effectively treat a major symptom would do enough to improve their quality of life that the wait for a cure would become less torturous. Truly implementing off-label use would require overhaul within the insurance industry such that clearly beneficial off-label use is covered just the same as an antibiotic. The healthcare industry's continued failure to address the rare disease community's needs is no small matter, as rare diseases effect more than 30 million Americans.

Furthermore, pharma marketing absolutely must be revamped. While I am a firm believer in the engaged patient and participatory medicine, prescription drug interactions are not within the common patient's frame of knowledge. Marketing directly to the patient—at least in the manner in which it is done in the U.S.—and commanding that patients "ask your doctor about" prescription X, Y or Z is out of line and a sure sign of pharma's nature to prey on patients' desire for a cure to their disease. This methodology also is a disservice to healthcare providers who presumptively have more knowledge of the drug, its interactions, and the patient's condition when that healthcare provider determines that the drug is not appropriate for the patient and the patient subsequently blames the provider for a failure to provide care. The flip side of this is, of course, that marketing directly to providers may sway the providers' choice of medicines. While medicines come with a set list of possible side effects, each patient is an individual. A patient may have demonstrated adverse reactions to a drug, yet a provider unfamiliar with that patient may go against the patient's assertions that medicine x—though not new and shiny and expensive—really truly works better for him or her than medicine y.

We must ultimately remember that pharma and healthcare in general has turned the matter of life or death into a series of business decisions. Only when we put what is best for the patient—with respect and consideration for each patient as an individual—back at the forefront will we be able to actually effect change and engage in the true meaning of the word healthcare.

Examining this issue further is an extension of the Doctors 2.0 & You mission.

"Doctors 2.0 & You is a forum for exchange amongst healthcare's stakeholders internationally," Sibler said. The Doctors 2.0 & You manifesto was about all healthcare and fighting for better care in general. The next step is to drill down into specific issues."

In order to do so, Sibler will be working in conjunction with ePatients like myself in order to collect additional information about ethics in patient-pharma relations with the intent of issuing a report on the group's findings.

19 September 2012

#HCSM Review - Sept. 19 Edition

The HCSM Review is a peer-reviewed blog carnival for everyone interested in health care social media. This edition is loosely based on the theme of motivation and how it plays into our roles as patients, providers and caregivers. 

Motivational Lessons
"I look back now and wonder how my working self would assess my own motivation and participation over the last few years. On a good day I'd be the perfect patient, self-motivated, engaged, determined. On a bad day I'd be the surly, non-compliant patient threatening to throw a cup (or worse) at my head. It's just luck of the draw." - Rusty Hoe, Living With Bob (Dysautonomia)

Lather Up: doctors resistant to patients’ requests for hand-washing
"As patients we need to learn to work with what is until doctors and nurses are more accustomed to working in partnership with patients." - Martine Ehrenclou

Blogging and the Experience of Cancer Survivorship
"The apparent randomness of a cancer diagnosis shakes your sense of identity to its very core and afterwards nothing will ever feel certain again. Friends and family may find it hard to comprehend why you are sad or depressed. Understandably your loved ones want you to put your cancer behind you, to get on with your life and move forward, but it isn’t so easy." - Marie Ennis O'Connor, Health Care Social Media Monitor

Other favorites from this week's blogosphere:

"Patient satisfaction can be broken down simply into two main issues… expectations and perceptions. Patients enter your office with a perception of the care or interaction they desire. They then decide if you met those expectations." - Howard J. Luks

Efficiency, Value, And Unexpected Consequences
"I settled into my morning routine, but couldn't shake the feeling that something was wrong... I entered the exam room to find my first patient anxiously clenching the exam table. Before I could open the chart, he began to sputter." - Jordan Grumet

"We need to focus on re-educating clinicians about how to partner with patients — how to elicit patient preferences, and how to anticipate when a decision is a preference-sensitive one. We also need to coach patients, to help them not only learn information relevant to their treatment choices but also to help them find ways of communicating their desires more effectively to their clinicians." - Peter Ubel

"When we feel love and kindness for others, it not only makes others feel loved and cared for, but it helps us also to develop inner happiness and peace." - The Dalai Lama

Look for next week's HCSM Review to be hosted by the venerable chancellor of SMUG (Social Media University Global), Lee Aase. 

16 September 2012

Side Effects

Tell your doctor if any of these symptoms, are severe or do not go away:

nausea
vomiting
stomach pain
heartburn or gas
diarrhea
constipation
decrease in appetite
weight loss
dizziness
drowsiness
tiredness
weakness
headache
sweating or flushing
confusion
difficulty remembering or concentrating
anxiety
uncontrolled, sudden body movements
shaking of a part of your body that you cannot control
decreased sensitivity (response) to touch
frequent or urgent need to urinate
difficulty urinating or pain when urinating
in men, difficulty achieving or maintaining an erection
back, muscle, or joint pain
pain, burning, numbness, or tingling in the hands or feet
swelling of the hands, arms, feet, ankles, or lower legs
dry mouth
hallucinations (seeing things or hearing voices that do not exist)
fainting
chest pain
slow, fast, or irregular heartbeat
shortness of breath
difficulty swallowing
double vision or other changes in vision
nausea
diarrhea
constipation
changes in sex drive or ability
drowsiness
increased sweating
dizziness
heartburn
stomach pain
excessive tiredness
dry mouth
increased appetite
flu-like symptoms
runny nose
sneezing
unusual excitement
seeing things or hearing voices that do not exist (hallucinating)
fever, sweating, confusion, fast or irregular heartbeat, and severe muscle stiffness
drowsiness
light-headedness
headache
tiredness
dizziness
irritability
talkativeness
difficulty concentrating
dry mouth
increased salivation
changes in sex drive or ability
nausea
constipation
changes in appetite
weight changes
difficulty urinating
joint pain
shortness of breath
seizures
seeing things or hearing voices that do not exist (hallucinating)
severe skin rash
yellowing of the skin or eyes
depression
memory problems
confusion
problems with speech
unusual changes in behavior or mood
thinking about harming or killing yourself or trying to do so
problems with coordination or balance
anorexia
weight loss
polyuria
heart arrhythmias
raise blood calcium
nausea
vomiting
loss of appetite
constipation
dry mouth
lightheadedness
drowsiness
flushing
sweating
itching
weakness
headache
mood changes
decrease in pupil (dark circle in eye) size
red eyes
fast or slow heartbeat
difficulty breathing
slowed breathing
hives
rash
swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs
hoarseness
difficulty swallowing
hallucinating (seeing things or hearing voices that do not exist)
seizures
confusion
fainting
dizziness
loss of consciousness
weight loss
tremor
headache
nausea
vomiting
diarrhea
stomach cramps
nervousness
irritability
insomnia
excessive sweating
increased appetite
fever
changes in menstrual cycle
sensitivity to heat
temporary hair loss, particularly in children during the first month of therapy
chest pain (angina)
rapid or irregular heartbeat or pulse



This report on medications is for your information only, and is not considered individual patient advice. Because of the changing nature of drug information, please consult your physician or pharmacist about specific clinical use... Users are advised that decisions regarding drug therapy are complex medical decisions requiring the independent, informed decision of an appropriate health care professional, and the information is provided for informational purposes only. The entire monograph for a drug should be reviewed for a thorough understanding of the drug's actions, uses and side effects. 
                   - The American Society of Health-System Pharmacists, Inc.

14 September 2012

#HCSM Review - Send In Your Submissions

What motivates you? What demotivates you?

On Wednesday, Sept. 19, The Afternoon Nap Society will host HCSM Review—the peer-reviewed blog carnival for everyone interested in health care social media. This edition will focus on the theme of motivation and how it play into our roles as patients, providers and caregivers.

Submitting a post is easy. Simply email a link to your post or posts (no more than two submissions per author) by midnight (ET) on Sept. 17. The more honest the post the better—this isn't about being a hero; it's about carrying on. For good measure, format your submission email as follows: 

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent link to post:
Your Name: Name, Username, Nickname, or Pseudonym
Description or brief excerpt:

Learn more about HCSM Review by visiting HealthWorks Collective

21 August 2012

19 Days of Living with FMD - Day 2 - A Rare Disease in Focus

Eighteen days - that's how long FMD Chat, a fledgling nonprofit organization dedicated to those affected by the rare disease fibromuscular dysplasia, has left to raise $1,274 more dollars in order to reach its MedStartr goal of $5,000. Why do I care? Because I have fibromuscular dysplasia and FMD Chat is my organization. FMD Chat relies on social media to connect patients around the world with the peer-to-peer support that makes living with a rare disease less of an isolating experience.

What is MedStartr? MedStartr is a crowdfunding platform specifically designed for healthcare. It's like Kickstarter, but not. It has given FMD Chat access to a group of potential donors who would never otherwise know about or have interest in contributing to a small group of rare disease patients. However, many donors still remain "potential" donors and the small group of rare disease patients still need donors' support. If FMD Chat does not meet its $5,000 funding goal by Sept. 7, then the project fails and all the money raised goes back to the donors.

In order to help raise awareness of FMD Chat and its goal, I have taken up the tactics of public radio's listener support fund drives—nineteen days to meet our goal, nineteen posts to show you what it's been like, and what it continues to be like, to be me, a patient with FMD. Today, marks day two.

WARNING: it's going to get graphic. 

DON'T WANT TO SEE IT
: help FMD Chat reach its goal before I get to the emergency surgery pics. 
Day 2
This is my neurologist's office.
I have been his patient since April 2008. 
At age 28, and after three days of an intense earache,
I suddenly was overcome by dizziness.
An ambulance was called.
I don't remember much of the next 24 hours.
Despite pronounced Horner's Syndrome,
the hospital doctors said that I had vertigo
and that it would go away as quickly as it had come on.
They were wrong. 
It was at home that I discovered I had 
lost my senses of pain and temperature on my right side.
Concluding that this was abnormal,
I made an appointment with my family practice doctor.
He too concluded that something was wrong
and referred me to the neurologist.
My neurologist, diagnosed an ischemic stroke.
More than four years later,
I still have deficits.
More than four years later,
I see my neurologist at least twice a year.


20 August 2012

19 Days of Living with FMD - A Rare Disease in Focus

Sometimes it's hard to understand just what it means to be a patient. It's even harder to understand what it means to be a patient with a rare disease. So - I'm going to show you.

To put it very bluntly, fibromuscular dysplasia has tried to kill me many times before. I'm doing my best not to let it. FMD Chat is raising funds via MedStartr, so that the organization can grow to support more fibromuscular dysplasia patients like me around the world.

FMD has no cure, but at the very least we can care. We have 19 more days to raise $1,274 dollars, so for 19 days—or until we reach our goal—I'm going to show you what it's been like, and what it continues to be like, to be me, a patient with FMD.

WARNING: it's going to get graphic.

DON'T WANT TO SEE IT
: help FMD Chat reach its goal before I get to the emergency surgery pics.

Day 1
This is my right kidney.
It is the only kidney I have.
My other kidney was removed when I was 29,
after my renal bypass failed.

16 August 2012

Living & Giving Wholeheartedly

It's 3:30 a.m. I have not yet been asleep. There's too much to do. Too much to worry about. I am counting down the days until October when, as of right now, each day does not bear a color-coded task to be completed. Right now, the only things that have to be done in October are return from the Medicine X conference in California, meet my editorial deadline for the magazine of which I am editor, go to the dentist, and send the magazine to press. I should also probably celebrate my wedding anniversary.

The problem is that between now and then I will inevitably create at least a dozen more things for myself to do. I am responsible for at least half of my heavy load. Glutton for punishment, I fill my time with intensive responsibilities rather than enjoy the company of those I love and the things I like to do. The matter is complicated by the fact that I enjoy my self-imposed work. September will mark a year's time since I truly threw myself into the realm of healthcare and social media. It's been a whirlwind year marked by so much learning and inspiration and passion that I have admittedly somewhat lost myself. There is little to no time to spend in quiet reflection. Instead there are things to be done. Tasks to accomplish. Goals to achieve. And even before I have ticked one off my list, I've added another.

This stubborn drive is a hallmark of my character, for better and for worse. Increasingly, I am hearing the calls from friends and family to slow down, that they don't know how I do it all, that it doesn't all have to be done at once. In large, they are right. The sticking point is that I am keenly aware of working with a potentially limited clock. We all are working with a potentially limited clock. What bothers me is that my heightened awareness of this clock makes me push against it to complete the tasks that I have decided are important to me before time expires. I want to make a difference. I don't want fame or fortune. I simply want there to be some lasting indication that I was alive.

Recently, the arts-based healthcare advocate Regina Holliday told me that people are inspired by—and more willing to get behind—that which we present as our life's work. She is one who would know. She wears her heart on her sleeve in all the right ways. I tend to be a bit more quiet. I am an advocate of opportunity, plugging doggedly away for a cause that the overwhelming majority of the world couldn't give a damn less about. We in the rare disease club are, as individual diseases, fractions of populations. The rareness of our diseases not only isolates us as patients in need of care, it isolates us from the support networks that drive awareness and research of the more common diseases. Frankly, I can not imagine a world in which I will never have to spell fibromuscular dysplasia and explain it as a rare vascular disease for which there is no cure. Because I can not imagine that world, I am trying to create a world in which fibromuscular dysplasia patients like me do not feel so alone. My philosophy for creating an organization dedicated to fibromuscular dysplasia is based on my own desire to be treated with compassion and dignity, to encourage camaraderie among patients, to provide resources for caregivers, to foster interest within the medical community. I want to create the kind of environment that addresses the diagnosis from a whole patient perspective, that provides the type of care that I, as a child, teenager, young woman, and now spouse, have needed.

Nothing about advocacy is easy. To do it wholeheartedly means to give up much of oneself. What drives me onward is what I get back. It never ceases to amaze me how much our little community of patients cares about one another. Participants notice when someone has been absent for awhile. They reach out. These small communications are so important. They represent never having to be alone. They represent empathy in its truest form. I never thought that I could care so much about people whom I have never actually met. These people, these patients, these participants, are part of my heart.

So I push. I take on more than I should. I neglect the kitchen sink full of dishes and use Google translate to write an email in Italian to reach out to a rare disease group half a world away. I plan another fundraiser, contact another doctor, tweet out another link. It is all consuming. It is exhausting. It is what I both dread and desperately need. And I need you. I need for you to care. There are so many passions and tremendous causes angling for attention, and it is oh so easy to tune out the many pleas while going about one's daily routine. One says no, looks away, moves on, and assumes that someone else will step up and step in. In order to effect change—any kind of change—we must each learn to care, to engage, to give of ourselves. Whether you give to my cause or to any other, give yourself, give your heart, give your time, give your talent. Give without expectation of what you will get, but with an openness to the possibility of receiving more than you expected.



Help FMD Chat reach its $5,000 goal by Sept. 7.

13 August 2012

Lament for the Fifth Cranial Nerve

My right side
is my dead side, 
where the nerves fried, 
but I tried 
to piece it back together.

My left side
was my bad side,
would just abide,
but my pride
forced me to be its master.

My inside
is where I hide
and confide
that i lied,
it long stopped getting better.


Posted on the occasion of a friend having also become a young stroke survivor. 
Learn more about the signs of stroke

31 July 2012

Metaphors of Depression - or - Help. I'm in a hole.

I'm in a hole. I'm in a hole, and I've been in a hole.

A hole is dark. A hole is deep. And given enough time spent in a hole, one begins to find the hole comfortable or, at least, comfortably familiar, which makes crawling out of the hole less appealing. Eyes adjust to the dimness; skin adapts to the dankness. To crawl out of the hole is to be blinded by the light, it is to be overwhelmed.

Living outside the hole is less difficult than crawling out of the hole; yet no part of living in proximity to a hole is easy. One is constantly aware of the hole's holeness. The hole is always there. What varies is how much energy one must expend on not falling in the hole. At times one may simply know that the hole exists. At other times one may walk directly to the rim and say, "Look there's a hole; I will not fall into it." Yet again, one may stumble, crashing in up to one's shoulders, clawing handfuls of dirt and sticks and stones for traction and still be able to find a toe hold and climb out. Spent, emotionally and physically exhausted, one carries on, knowing that next time... next time... it may have rained and the soil that surrounds the hole will have turned into slick mud that, given a foot's sudden slip, will cause one to slide swiftly in, tumbling and turning along the way down, to land with a thud, breathless, sweating, and sore on the hole's floor.

I am in a hole.

The problem with being in a hole is that I am not allowed to be in a hole. And so I, like so many others living in holes, pretend that we are not. We rub sticks together to light a spark. We use our hands to cup silted water from underneath rocks into our mouths. We eat bugs. And we survive. Just barely, we survive. We work, we lead, we live—all from within our hole. Being in a hole, of course, makes it harder, as does continually maintaining the ruse—for ourselves and for others—of not being in a hole.

It is a matter of expectation that forces us to live in this way, this hole dwelling. We expect so much of ourselves, and we bend to the expectations of others. We take on too much because we feel that we should. We never say no because we feel that we shouldn't. And when our burden of expectation grows too great, we still stubbornly refuse to ask for the one thing that we need—help.

Help. It carries both the foulness and usefulness of its other four-lettered cousins. It can be used as a noun, a verb, an adjective, an adverb. It is a command. It is a request. Yet, for all its uses, help is so seemingly impossible a word to utter. To say it exposes a weakness, an inability to do something on one's own. To ask for it is the opposite of self-sufficiency, the opposite of strength, the opposite of leadership. Or at least that's how it feels for me.

Disguise receiving help as delegating duties and perhaps I would be more apt to take it. As it is, I am stubborn. Often I react poorly to offers of help, putting them off for the fear of seeming incapable on my own or, at other times, preferring to exercise control and failing to trust that others will live up to my standards. I know enough to recognize that this methodology is neither extremely efficient or effective. Yet, I also know enough to realize that in this modern, insulated, self-centered world, there are too few out there who are truly willing to offer—no strings attached—help. We've even developed the terminology "professional help" for the group of workers who are paid to do the things that others will not help us do be it care for our loved ones, clean our home, or listen to our weeping heads and hearts.

We must do better. We must reimagine help. We must give what we wish to receive and open ourselves to the possibility of receiving it.

I am in a hole. I am in a hole, but I am willing to bet that someone has a ladder. Once that ladder arrives, it is up to me to climb out. After that, I'll be looking for shovels and strong shoulders to help me fill in the hole so that next time my fall isn't as deep.

23 July 2012

Today's The Day—FMD Awareness Day

On Monday, July 23, fibromuscular dysplasia patients and those who are family members, friends, and healthcare providers to FMD patients are asked to join in a global awareness event to raise the disease's profile and contribute to rare disease research.

Fibromuscular dysplasia (FMD) is a noninflammatory, nonatherosclerotic arterial disease that is most commonly seen in women. It may present at any age, but is more commonly discovered when the patient is between the ages of 20 and 60 years old. Patients may be asymptomatic and remain undiagnosed; however, the disease may cause arterial stenosis, occlusion, aneurysm, and/or dissection. FMD most commonly impacts the renal and carotid arteries, though it has been identified in almost every arterial bed. FMD is considered a rare disease. In the U.S., a disease is defined as rare if it is believed to affect fewer than 200,000 Americans, according to the National Organization of Rare Disorders. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000, states EURORDIS. The disease, like the majority of rare diseases, has no cure.

Participating in FMD Awareness Day is as involved as you want to make it!

1) Wear a necklace or bracelet of red beads. Be sure to explain to others why you are wearing the beads. Use social media (Facebook, Twitter, etc) to share a photo of you wearing your red bead necklace or bracelet and share your story about why you are wearing it — for example, you're a patient, you know someone who is a patient, you support the rare disease community. Tag all Twitter posts with #FMDaware and tag FMD Chat on all Facebook posts. Encourage others to participate! (Why red beads? The primary form of FMD — the medial form — is said to look like a "string of beads" upon angiogram. Red is the color of blood.)

2) Donate your lunch money to rare disease research. Instead of going out for lunch, pack a lunch! Contribute the $5-$15 you would have spent on lunch to the CoRDS Registry at Sanford Health. Simply mail a check to Sanford Health Foundation, 1305 W. 18th Street, Sioux Falls, SD 57117 with Rare Disease Registry on the check's memo line. Encourage others to participate! Make lunch a communal event—eat lunch with a group of friends or co-workers and make sure to share stories of how FMD has impacted participants' lives. Take a photo of your lunch and share it via social media using the tag #FMDaware on Twitter and tagging FMD Chat on Facebook.

3) Contact your local media or hospital public relations team and ask for an opportunity to share your FMD story. Be sure to emphasize the angle of what it means to live with FMD — as a patient, spouse, caregiver, etc. FMD Chat's Readings & Resources page at fmdchat.org links to several helpful articles to explain FMD from a medical standpoint.

4) Contribute to FMD Chat via MedStartr. FMD Chat has until Sept. 7, 2012 to raise $5,000. Every dollar matters!

FMD Awareness Day is solely the creation of FMD Chat. For more information, visit fmdchat.org, facebook.com/fmdchat, or twitter.com/fmdchat.

18 July 2012

From the Patient's Point of View

It is so wonderfully weird to be written about rather than to be the one doing the writing...

I've been in the news lately.

It's a matter of split personality—there's AfternoonNapper, and then there's me. Is she me? Am I her? Can a me be a we?

So many of us are dueling our dichotomy. Our halves are split and split and split again. I am a patient. I am a leader. I am a writer. I am a reader. I am a wife. I am a persona. Regardless, I am continually happy to be able to say — I am — and these two words increasingly become a so much more powerful battle cry compared to the projections of I will or the impermanence of I was.

11 July 2012

The Problem of Being a "Patient"

There is a woman who graduated in the top 10 percent of her high school class and was accepted into the University of North Carolina at Chapel Hill. While still in college, she began her journalism career as a state employee in the public relations department of one of the University of North Carolina's 16 public institutions. Her early duties included writing press releases and assisting in annual report development for one of the university's partner institutions, which was charged with improving teachers' skills across the state.

As a junior in college, the woman joined her university's award-winning newspaper, quickly rising through the ranks from a staff reporter to desk editor. She partnered with other journalism students to facilitate a program in the local middle school, teaching children writing and technology skills to produce a student newspaper. When chosen to serve as the college newspaper's managing editor, the woman elected to stay on an extra summer school semester in order to fulfill her duties. 

After graduating, the woman took a job out of state. The job immediately thrust the young reporter into covering a murder trial in which the accused allegedly stabbed his girlfriend in the face and neck 27 times and subsequently blamed the attack on four young black males. The story was only the first in a long line of violent crimes including other murders, bank robberies, and fatal accidents the woman would write about over the course of the year. 

The woman took another reporting job that would allow her to move back to her home state. She spent the next four years writing in-depth enterprise and news feature stories for a two county area, as well as managing the newspaper's four-county arts and entertainment section. She was promoted to the position of special sections editor, overseeing all editorial and design work for the company's contracted publications. 

When the news company purchased a national magazine, the woman was made associate editor. During her time as associate editor the magazine, the woman went to graduate school, earning her master's degree and teaching at the same time. She was named the magazine's managing editor while still completing her degree and teaching, successfully balancing her responsibilities—in addition to those of being a wife—such that the magazine repeatedly won the title of best niche publication in the state's press association awards, the master's degree was completed on time, and her students overwhelming passed competency exams and developed a greater appreciation for the English language. Today, the bimonthly magazine draws its largest subscriber base from across the Southeast, and in addition to managing the print magazine, the woman also oversees all social media and sponsorships. 

In her spare time, the woman began a community service to assist a segment of the population. The service became internationally successful, and in order to provide service to additional people around the world, the woman partnered with well-known organizations in the United States and Europe. These partnerships and the woman's plans to grow her services led her to incorporate as a nonprofit and pursue IRS recognition as a 501c3 to allow donations to her organization to be tax deductible. She enlisted a group of advisors including a woman with an undergraduate degree in social services and graduate degree in human resources who also oversees her company's financial records; a woman with an undergraduate degree in communications and a graduate degree in liberal studies who also has worked as a pharmaceutical representative and is in charge of regional marketing for a large insurance company; a man with an undergraduate degree in business and graduate degree in accounting; and a man with an undergraduate degree in economics, law degree, and more than 25 years as chief legal counsel. 

How do you feel about that woman? 

Now... pretend that woman is a patient. 

Why must the "patient" label strip one of his or her accomplishments as an individual? 

Now... pretend that woman, who is a patient, is me. 

Patients will be the ones to change the system because patients are—before all else—people.



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