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This is not how Juanita Anderson imagined retirement. The 62-year-old Los Angeles resident stopped working last year after decades of service with Southern California Edison, the power company. But Anderson didn't really have a choice. She's been so ill that she hasn't really been able to work for almost eight years. Anderson's world turned upside down when she learned in 2000 that she suffered from systemic mastocytosis, a rare and incurable disease of the body's mast cells. As she describes it, "my body has become allergic to everything, even my own body," and she can suddenly be hit by overwhelming attacks of histamine on her body that restrict her breathing, jack up her blood pressure, and send her to the nearest emergency room. But it's not just the attacks that make Anderson feel vulnerable. She, like millions of other retirees and people with disabilities who can't work because of their illnesses, lives on a fixed income and has watched health insurance premiums, copays, deductibles, and prescription drug costs eat up a bigger and bigger portion of her household budget each month – so much so that she had little money left for anything else. As a result, Anderson's stuck at home a lot and her world has nar20 REGISTERED NURSE rowed, seeming to revolve only around keeping her disease at bay: doctor appointments, emergency room copays, bills in the mail, picking up and paying for drugs at the pharmacy. "My medical bills take a big chunk out of my retirement," said Anderson recently from the living room of her West Los Angeles apartment, which she suspects of harboring irritating mold. "It's a financial stress. I want to get out of here, but financially it's hard." Anderson first got the inkling that something was wrong when, at the beach one day in 1992, she scratched what she thought was a freckle on her leg and the freckle swelled up. "Oh no, I've got skin cancer," thought Anderson. A trip to the doctor and a few tests later, they learned she had urticaria pigmentosis, a form of dermal mastocytosis. For years the symptoms were limited mostly to itchy skin. But on New Year's Eve in 1999, Anderson was standing in line at the supermarket when suddenly she felt like she was dying. She felt a terrible squeezing of her chest. She fought to breathe. She couldn't talk. She felt incredibly hot, as if burning up from a fever. She ran out of the store and was eventually rushed to the hospital. Finally, after a bone marrow biopsy, Anderson learned she had full-blown systemic mastocytosis, which assaults her organs. From then on, her daily challenge was to avoid triggering one of her "attacks," as she calls them. At one point, she was taking 35 differ- W W W. C A L N U R S E S . O R G APRIL 2008