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.