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WHEN FIRST DIAGNOSED: UNDERSTANDING AND COMMUNICATING ABOUT
HIV-REACTING TO THE DIAGNOSIS
Most people react to learning of their diagnosis of HIV infection with acute confusion, shock, and disbelief. Steven Charles is twenty-five years old, and infected by HIV but asymptomatic. He is a gay man who lives alone in an apartment. Steven talks openly about his first reaction: “I got the diagnosis the day after my birthday. I went for the test, hoping to confirm I was negative. When the doctor told me, I ran out of the office and stood in the hall. I didn’t know whether to cry or not. I couldn’t believe it. I didn’t know what my priorities should be. Do you start gearing yourself up to leave the world, or to live?”
Lisa Pratt’s husband, Glen, a sixty-year-old man who had received an infected blood transfusion, would not believe the test results. Like Steven Charles, Lisa’s husband reacted to the diagnosis of HIV infection with shock and disbelief: “He kept saying, ‘Those idiots don’t know what they’re doing.’ He made them test him again and again,” Lisa said later. Some people, because they are gay or use drugs intravenously, have anticipated the diagnosis. In either case, the diagnosis confronts people, usually for the first time, with the possibility of getting sick and dying.
This possibility has no normal place in our lives. No one is ready to hear this news, or to assimilate it all at once: “What do you do with that kind of information,” said Steven Charles, “that you have this kind of disease?” It assaults our plans for the future, the principles by which we make decisions, who we think we are. As a result, people go into shock. Some people continue their lives almost unthinkingly: “For a few days after my diagnosis,” Steven said, “if it wasn’t automatic, it wasn’t getting done.” Others say they “freeze up” or “go on hold”: Lisa said that for a while, “Glen simply quit getting out of bed, quit eating.”
Shock and disbelief are the normal reactions to this diagnosis. So are problems with eating and sleeping. Alan Madison is thirty-five years old, also infected with HIV, is gay, and lives in a condominium with a long-time partner. “I didn’t sleep at first,” said Alan. “It was a lot of emotions for one thirty-six-hour period.”
With shock and trouble eating and sleeping comes an assortment of related reactions. People blame themselves and lose their good opinion of themselves. They are agitated and anxious and entirely preoccupied with the diagnosis. They are depressed, sad, unable to enjoy or take pleasure in things. They isolate themselves: “At first,” said Alan, “I unplugged the phone and said no visitors. I put up roadblocks on purpose.” When people first hear the diagnosis, they lose hope for the future and think about suicide. They are also furious: “My husband stood in our living room, swearing,” said Lisa Pratt. “He yelled, ‘Damn it, damn it, how did I hit odds that small?’”
When they first hear of their diagnosis, people with HIV are frightened by the prospect of sickness and death. Most are confused and don’t know what to expect or how to make plans: Will I be alive in ten years? Will I be alive for my next birthday? Can I eat in a restaurant? Will my partner leave me? Should I stay in my job? Will I live to see a cure? Will I run out of money? How should I behave? What should I feel? How am I different? People close to the person who is newly diagnosed may also be confused: “I didn’t understand what it meant,” said Lisa. “I thought he’d die in six months”.
Though these feelings are terrible, and though they will recur, their acuteness is shortlived. They last from a few weeks to a few months?typically around six weeks. People deal with these feelings the way they have dealt with all other crises in their lives. They use the same skills, the same strategies they always have. “My husband cried when he told me about it,” said Lisa. “I told my husband, ‘Don’t be sorry. I love you. We’ll handle this the way we handle everything else.”
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