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.

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