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Living with Lupus: Rita’s Story

separator Rita found out she had lupus four years ago, when she was about 43. How was it for her when she found out? “Utter shock,” she says. And knowing that it was something she’d have to live with was especially difficult. “It was harder mentally, because it’s a chronic condition,” she says. “I was always very independent, and I was an athlete. I kept saying to myself, ‘It can’t be lupus, it must be arthritis.’ The first year was scary and frustrating. But I said my prayers and asked for guidance.”

She found out she had lupus shortly after she was in a car accident. The car she was in was rear-ended. Afterwards, she says, “I couldn’t bounce back. I had chest pains, weakness, my hands never un-swelled…there wasn’t any one thing, but just a lot of little things.”

What’s daily life like for Rita? “I’m in constant pain every day of my life. My wrists, ankles, and fingers look like sausages. I have a lot of weakness and a low energy level. After about 2:00 or 3:00 in the afternoon, it really hits me.”

But she doesn’t have time to sit back and pamper herself. She’s a single parent of a 14-year-old daughter, Lindsay, and she also works full-time, as an operations analyst for her company’s call center. “I analyze work flow, do a lot of interviewing, I write a newsletter…actually, I took this position as a lateral move instead of a promotion. The position I had before required too much time at the keyboard, and I needed to get away from that.”

Right now, she takes three medications for her lupus. “Plaquinil for swelling, and Prednisone and aspirin for pain. I also take vitamins.” She does experience side effects from the drugs. She says prednisone “blew me up. I gained 40 pounds. I try to decrease the dose, but even when I go down just one milligram, my pain is worse. The drugs make your hair thinner—I lost half my hair. And I have dryness in my mouth.”

I spite of all this, Rita says she thinks of herself as having a mild case of lupus. “I feel like as long as I’m living like this—going to work, doing what I need to do as a mother, getting things done—I feel like it’s mild.”

That’s not to say having lupus hasn’t changed her life. It has, in profound ways. “It really limits what I can do with Lindsay,” she says. “I was the room mother for Lindsay’s class. Whatever she wanted to do, we did. I used to be the coach for her softball and basketball teams. I actually got out there and played. I can’t do that. I can’t bounce a basketball anymore; I can’t flip my wrists. ”

Lupus even affects the kinds of vacations she and Lindsay can take. “It’s prevented me from going on vacation because I can’t drive for long periods of time.”

Rita’s friends are understanding about her lupus now, but that wasn’t always the case. “My friends and family understand more now. They understand that I can’t always get up and do things with them. In the beginning, one friend of mine got mad because I had to back out on something we had planned, but she understands now. It’s hard sometimes, because I look okay, so people don’t always get it.”

Rita says she gets through each day because of her faith and her attitude that when you have something like lupus, it’s “mind over matter.” You have to just get up and keep going, she says. She also uses her mother as an example, because her mother has had a lot of health problems but still stays active and energetic.

Rita also takes steps to manage her stress level, because she finds that when she’s feeling a lot of stress, her symptoms are worse. “I do some meditation, I go to workshops, like Self to Soul, I listen to tapes by Deepok Chopra. I really like him, because he has logic, and I need some logic. I tried acupuncture, and it helped in the beginning but then not so much after a while. And it’s expensive, and I really couldn’t afford it.

Experts recommend that people with lupus get regular, gentle exercise. “They recommend aquatics for this,” says Rita, “but I can’t join a club because it costs too much. And if I go walking my feet blow up, and my ankles and knees hurt. I feel like a cripple, really.”

She’s struggling with her weight. “Because of this disease, I’m trying to manage my weight,” she says. She’s looking into several different diet plans right now, because she believes that if she gets her weight under control, she might feel better.

What would she say to people who are just finding out they have lupus? “Listen to what the doctors say, but you should also read up on it yourself. Find out what works best for you. If you don’t want to do or take something that your doctor recommends, be sure to talk about it with him or her. And remember that it really is mind over matter.”

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