Living with Lupus: Women and Chronic Illness in Ecuador

5. Loss

Chapter Five Loss By 2004 Rosa’s health had stabilized, and she was feeling better physically and psychologically. She was no longer “afraid of everything” and “living inside her own head.” She was also relieved to be spending less money on doctor’s visits and medications. Finally , she could begin saving for other things. Her family life had returned to normal as well: Lucho was still in New York working; her son and two youngest daughters were back in school full time; and her eldest daughter, who was so crucial to navigating the medical system, had moved to Quito where she was completing a medical internship. In early August when school resumed after vacations, Rosa returned to spending her days tending her small store. The store was a few blocks from their rented home, and she sold basic food items, treats for school children, and beer for the workers who congregated at the nearby bus station. The store was located on a very busy street, and there was a great deal of competition, including a new, full-service gas station with a small minimarket. While the store was not very profitable, it did get her out of the house for the day, which everyone thought was a good idea. She talked to neighbors who wandered by, chatted with customers, and watched the traffic on the busy street. After years of appearing withdrawn, Rosa’s personality was reemerging and she started to take pleasure in her family again. She was especially proud of her youngest daughter, Cecilia, who was sixteen and in high school. Despite the family’s humble background and “Indian” surname, Cecilia had matriculated into the premier public high school, and she was popular with students and teachers (see Miles 2004). Rosa indulged her by buying her fashionable clothes so that she would continue to fit in. A few weeks after school started, however, Cecilia began to feel tired much of the time; her feet and ankles swelled; and a rash emerged on her legs, arms, and face. She was very quickly diagnosed with lupus. The doctor started her on an aggressive 80 | Living with Lupus treatment regimen, including a high dose of prednisone, a corticosteroid, and Plaquenil, and she was advised to watch her diet. The family was shocked that someone so young could have lupus, but Rosa’s continued good health buoyed their hopes that Cecilia too would do well in the long run. Unfortunately over the next months Cecilia’s lupus proved difficult to control, and she continued to have major problems with inflammation, tenderness , and rashes on her legs, hands, and face. She also developed the “moon-faced” swelling of her lower jawline that is typical of steroid use. Although she was popular and had good friends, she felt uncomfortable at school where her classmates continually asked questions about why her face suddenly was red, splotchy, and distorted or how she had gained so much undesirable weight. Some of these questions were not altogether well-meaning. At sixteen years old, these kinds of comments can be devastating to an adolescent ’s self-esteem, and Cecilia, who suddenly felt ugly and awkward, became depressed. Her biology teacher, who had some training in medicine, took an interest in her case and consulted with her periodically about how she was doing. One day he suggested to her that perhaps she had developed Cushing’s Syndrome , an endocrine disorder caused by high doses of corticoid steroids. He showed her some pictures in a textbook of Cushing’s Syndrome, which included faces horrifically distorted by swelling around the jaw and neck, unsightly facial hair, and ugly purple spotting. According to her sister, Cecilia was devastated by the suggestion that she might have Cushing’s Syndrome and, worse yet, confused about what she should do about it. She was in a terrible predicament. If her teacher was right, the life-saving treatment for her lupus created a condition that she found impossible to live with: The very thing that made her lupus better, prednisone, made her social life miserable. Whether her teacher provided her with a solution to her problem or only presented the probable cause as he saw it, is not clear, but what Cecilia took away from their conversation was that if she did indeed have Cushing’s Syndrome , she could control it herself by reducing her use of steroids. Moreover, her teacher also mistakenly suggested to her that the swelling was a kind of edema, which was affected...