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Chapter Six Suffering When I visited with Rosa eighteen months after she was diagnosed with lupus, I thought she looked terrible. Her face was swollen and distorted by the steroid use, and it had a distinctively ruddy color. She moved very slowly and cautiously, shuffling her feet as she walked, and she seemed to lack interest in, and have difficulty following, conversations. She now wore pants regularly to stay warm, something she told me once she could never do. She grew up in the countryside wearing the pollera skirt, and while she had shifted to more modern skirts a few years earlier, pants heretofore were out of the question. I could not help but notice that Rosa had stopped doing many of the things she had previously enjoyed and excelled at doing, including cooking and knitting. Her hands, she told me, were now awkward and stiff and she found it too difficult to move her fingers in the right way to knit and to focus her mind for long enough to count the stitches. I described her at the time as a “shadow of her former self” as her usual vitality, good humor, and interest in others were completely missing. She was seeing her rheumatologist fairly regularly as her lupus at this point was far from controlled, and she was still taking several different medications. Her children had taken over cooking meals and tending their small store whenever possible, and Rosa spent most her days at home watching television. While we talked repeatedly about her illness at the time, one experience in particular brought home to me the real difficulties of her condition. I accompanied Rosa to a routine appointment with her rheumatologist that spiraled into a three-day hospital stay and gave me the clearest indication I had yet of how unpredictable lupus could be and how difficult the medical system is to navigate. In the days before the appointment, Rosa had been having regular headaches, worrying everyone. The day of the consulta dawned cloudy, 101 | Suffering cold, and rainy and Rosa and her daughter were out first thing in the morning to have blood work done prior to her afternoon consultation. They had to take two buses to the lab in the center of town since their twenty-year-old Datsun taxi that Lucho had left behind would not start that morning. At one o’clock Rosa and her daughter Alejandra, who was in medical school, picked me up to retrieve the lab results and head to the doctor’s office. In the taxi, Alejandra became quiet as she studied the various computer printouts from the lab. By now she knew good numbers when she saw them, and she did not see them. At a minimum, Alejandra whispered to me, she figured that the doctor would order a blood transfusion, which he had done the last time her blood counts looked like they did that day. On the other side of me, Rosa was taciturn and seemed uninterested in what her daughter and I were discussing , and she quietly gazed out the window. Alejandra’s interpretation of what the lab results would mean for Rosa turned out to be on the conservative side. The rheumatologist we visited is a small, compact man with a quiet voice and an authoritative demeanor. He did not examine Rosa that day but knew from her lab results that her condition had deteriorated. He was concerned that she could have a dangerous flare that might set her back for weeks or even months. He quietly told Rosa that she would need two rounds of a powerful immunosuppressant and perhaps several blood transfusions and that this could best be done in the hospital. To my left Rosa said nothing but “Sí, doctor,” as tears filled her eyes. The doctor then turned to Alejandra, whom by this time he had identified as the person most likely to understand what he was saying, and who made many of her mother’s medical decisions. He treated Alejandra with considerable respect, given their multiple status differences (age, gender, class), and he spent the next 15 minutes negotiating with her how, both logistically and financially, this treatment plan would unfold . They discussed hospitals (which one was affordable to the family yet met the doctor’s care standards?), buying medications (where could Alejandra reliably purchase the needed drugs at the best cost?), and procuring blood. Alejandra would have to go to the Red Cross office downtown to purchase blood, which...

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