For many young people with lupus, the transition to caring for themselves as adults is challenging.
Family Ties: Eduardo Xol creates Zen retreat for sister living with lupus
by Gerri Miller
As a member of the design team on the popular series Extreme Makeover: Home Edition, Eduardo Xol helps improve the lives of a family in need every week for ABC TV. Off camera, Xol, the eldest of three siblings in a close-knit Mexican-American family, is helping his sister, Monica Cajayon, cope with lupus. He not only provides an understanding ear and a strong shoulder, but also has put his landscaping talents to work by designing a relaxing Zen garden retreat in her backyard.
“We’ve always been there for each other, not only as brother and sister, but as friends, with moral support and understanding,” says Xol, who, at 45, is five years older than Cajayon. “There have been moments when she has felt awful, and like nobody really understands. She calls me, and I just allow her to vent.” In turn, he says, “She’s let me lean on her shoulder if need be. We’ve been close our whole lives. I think it comes from our parents and relatives who taught us how important family bonds are, and the love and respect we were taught from a very young age that reinforced our relationship. Friends can come and go, but family is always there for you if you nurture that relationship.”
Cajayon, a part-time teacher of English as a second language, is also close to their brother Ernesto, 41, an electrician; their parents, Mirna and Eduardo; and their extended family, which includes four aunts on their mother’s side. All live in the Los Angeles area. “I’m very lucky that when I feel under the weather, everybody jumps to help out. I’m very, very lucky. I’m unusually blessed,” Cajayon says. Daily phone calls, Thursday night dinners, Sunday brunches, and twice-yearly parties for their entire clan of 140 provide extra support for Cajayon.
The Road to a Diagnosis
Cajayon was finally diagnosed with lupus in 1998 after many years of not feeling well. “She had periods of feeling sick for a lot of her life. It actually started when she was a child, and it got a bit worse in her college years,” Xol says. “She was really trying hard to take care of herself and maintain a balanced, healthy lifestyle. But it didn’t matter what she was doing, she just wasn’t
feeling any better. It was really frustrating to her because she knew something was wrong.”
Working for the youth program Upward Bound and as a private tutor while enrolled at Cal State Los Angeles, Cajayon says she felt burned out, but she attributed it to her busy schedule. She was 26 and was starting her graduate studies. At one of her many visits to the campus health clinic, a doctor suggested lupus as a possible cause for her chronic fatigue, low-grade fevers, and joint pain. The clinic doctor recommended Cajayon see a rheumatologist.
But Cajayon didn’t have health insurance, so she put the recommendation out of her head for a while. “I’d never heard of lupus, and the doctor wasn’t able to explain it to me well enough for it to register,” she says.
Two years later, with her thesis nearly done and down to one job, Cajayon expected to feel better. But she didn’t, and she became more concerned. She had met the man who would become her husband, Chito Cajayon, and he helped her get a teaching job with health benefits. A rheumatologist ran a battery of tests and confirmed a lupus diagnosis. “The positive thing about getting diagnosed is you have an answer,” Cajayon says. She and her family began researching lupus right away.
“We all started to help her, going online and doing a lot of reading and trying to become educated,” Xol says. “Our dad has had a stroke and issues with his heart, and we learned from him that we need to be advocates and responsible for our own health care.” A few years ago, Xol reached out to the Lupus Foundation of America when Cajayon’s daughter, Monet, now 7, began exhibiting some unusual symptoms, including worsening back pain.
“They got back to me right away with recommendations for specialists in the Los Angeles area,” he says. Doctors found a hydromyelia, a benign fluid-filled cyst, on Monet’s spinal cord, and blood tests revealed positive antinuclear antibodies (ANA), a sign of inflammation. However, Monet has not been diagnosed with any autoimmune diseases. She continues to be closely monitored.
Cajayon took Plaquenil® and Naprosyn® (naproxen, for joint pain) after her diagnosis, but experienced side effects that included weight loss, nausea, and gastrointestinal discomfort. When she was trying to become pregnant, she stopped taking all medications after receiving her physician’s consent. Off the meds, she was elated to discover she felt better than she had in years, with lots of energy and a hearty appetite. “I went into a full remission and didn’t feel any of the symptoms,” she says. After she gave birth, though, her lupus flared up; she also developed uterine fibroids. “It was a pretty tough year and a half. How much of that was from being an exhausted new mom and how much was lupus-related, I couldn’t tell you,” Cajayon says.
A Zen Retreat
Cajayon remains off medication today, except for prednisone when her lupus flares up. “I have a fairly mild case. I have my blood tested, get my kidneys checked often, and see an ophthalmologist once a year,” she says. “I’m pretty good about monitoring the things that doctors would look for. I’m super sun-sensitive, so I’m very careful about protecting myself. In the summer I don’t spend any time outdoors until 4 or 5, because it’s really sunny where we live.”
When she does venture out, though, she has a shaded, relaxing retreat in her own backyard, built by Xol in the Japanese style Cajayon loves. “The idea was to create an environment that would be conducive to her wanting to be outside and stay connected to nature,” Xol says. “I figured if I created this environment that would allow her to go outside and read or sit with her daughter for a little while, it would help her lead a more balanced lifestyle.” (See the video “Creating a Garden Oasis” at www.hayneedle.com/eduardoXol_lp.cfm.)
Xol fondly recalls the times he and his siblings spent as children in their maternal grandmother’s garden. “Our parents were both working, and she’d take care of us,” he says. “We’d help her in her herb garden and in the kitchen.”
“We spent a lot of time with extended family,” Cajayon adds. “My father worked two jobs to put himself through night school, but he always came home for dinner. We always ate dinner together, and that meant a lot to me as a child. We didn’t have a lot of money, but we took road trips to Mexico. We did a lot of things together as a family.”
More recently, Cajayon’s parents helped her and her husband buy their Altadena home, and they often babysit Monet so Cajayon can rest, something her brother Ernesto also does. She adds that she relies on friends who also deal with health issues, such as Parkinson’s disease. “These women have a lot of the same challenges as people with lupus do. We’ve created our own little support group.”
Cajayon also gets plenty of support from her husband, vice chancellor for economic and workforce development for the Los Angeles Community College District, now working on his Ph.D. “He knew what he was getting into when he married me. He says, ‘Whatever you can handle that makes you feel good is fine,’” she says. But as a woman who considers herself a devoted, hands-on mother, she can get sad that she doesn’t have more energy for her daughter, even though Monet
understands. “She can tell when I’m a little bit down, and she’ll say, ‘Why don’t you take a rest and I’ll play by myself?’ ” The family has also learned to love naps. “My husband takes them with me. I tell Monet, ‘If I take a nap, I’ll feel better and we can play again.’ She used to be very reluctant to nap, but she knows I need it.”
Cajayon has made other lifestyle changes to improve her well-being. “I don’t drink. I don’t smoke. I used to do both. I don’t stay out late. I eat pretty healthy. I try to make myself look nice. I try to keep myself up, because it helps me psychologically. I’m very much aware of my physical limitations. I definitely try to get a decent amount of sleep, and when I’m feeling extra tired or I feel like I’m in a flare-up, I take time to relax.”
She admits, however, that she’s not as responsible about exercise as she is about her diet. She would like to resume dancing, something she has always enjoyed. Also on her to-do list: She hopes to one day return to Paris, where she and Chito honeymooned, and show Monet the gardens and paintings created by her namesake, the impressionist painter Claude Monet.
Time for Family
Xol has his own set of goals. The designer will leave Extreme Makeover: Home Edition after this season to focus on his family and projects closer to home, including his nonprofit educational foundation, the ALUMI (Alternative Learning Using Multiple Intelligences) Media Group. “Seven years on the road is a long time,” Xol says. “It’s time for me to be closer to my family and take care of my home as well. You’re only as good to somebody else as you are to yourself.”
Having lived with lupus for more than a dozen years now, Cajayon has valuable coping advice for others. “I think when it comes down to it, you’re your own best advocate. It’s about being responsible, monitoring your health, and keeping a journal, which I do,” she says. “Do research, but don’t panic. Understand that every case is different, and yours may be different from the one you’re reading about.”
She also recommends that people with lupus, especially moms, realize their limits. “As women and moms, we tend to do more than we should sometimes. It’s OK to say ‘no’ and not do all the things that people want you to do,” she says. “That’s what I’ve come to terms with.”
As a relative of someone living with lupus, Xol says, “I think the most important thing is to be patient and sensitive to the fact that there are still a lot of questions that don’t have answers, and that’s sometimes more frustrating to those in the support system than to the person with the disease.” He adds, “You have to be patient and supportive and be OK with the fact that we’re still in the process of trying to understand what this condition is all about.”
Many experience changing dynamics in their relationship when a loved one is handed a lupus diagnosis.