One day she complained her knees ached. The next day it was her fingers. Later that week she was so draggy she could barely get to work. Two months ago she worried about a rash that wouldn’t go away.
Diagnosis: whiner.
Thankfully, times are changing for women in the doctor’s office, and no medical problem called for a more dramatic change than lupus.
Many women can tell of the months and years of doctors’ visits they endured before someone put a name to their chronic discomfort and prescribed treatment. But while lupus is still low-profile with the public, doctors are tuning in.
With lupus, the body’s immune system, instead of fighting viruses and bacteria, attacks everything from the joints to the skin, from the blood to the kidneys. The effects of lupus can be mild, crippling or life-threatening. Lupus flares, then subsides. It’s maddeningly unpredictable.
Anyone can get lupus, but 90 percent of the cases are women in their childbearing years. About 500,000 Americans have been diagnosed with lupus.
Diagnoses have definitely sped up, said Nabih I. Abdou, a lupus expert at St. Luke’s Hospital in Kansas City, Mo., especially over the last five years. Physicians are educating themselves about the disease and reading women’s complaints more closely. More women know to bring it up with their doctors.
The disease remains tough to tag, however. Stress, injury, even sunlight can trigger symptoms. Patients might seem to have the flu, poor circulation, heart problems or scores of other illnesses.
To reach a diagnosis, doctors order sophisticated blood tests and read the symptoms. On average, patients wait six months to three years for a proper diagnosis, said Glenda Amon-Sarmiento, president of the Lupus Foundation of America. But the time frame a decade ago was eight to 11 years.
Without a cure, treatment has focused on quieting symptoms. Thousands of women have benefited from an anti-malarial drug, although the therapy can damage the eyes. Some doctors have had success with chemotherapy to suppress the immune system. But drugs such as Cytoxan can cause nausea, bloating and hair loss.
Abdou is researching the link between hormones and lupus. Some researchers suspect hormones somehow drive the disease, but they aren’t sure how. One study reported good results with treatment of a hormone called DHEA.
Myrtie Gourley, president of the Kansas City chapter of the Lupus Foundation of America, said patients can find plenty of local support, including lupus information from local chapters and support groups.
Women with lupus have experienced it all: the struggle for a diagnosis; the debilitating fatigue; the roulette wheel of medicines and their side effects. The personal stories best describe what it is to live with the disease.
Donna Mead
Blond, blue-eyed Donna Mead enjoyed lying in the sun, soaking up a little color. One day, a few months before her 21st birthday, she and a girlfriend fell asleep under the ultraviolet rays.
“We were burnt to a crisp,” said Mean, who is now 33 and lives in Independence, Mo. “My whole body ached; I couldn’t get out of bed. I felt like I had been run over by a truck.”
The burn eventually went away, but a rash developed on her cheeks and nose. Friends attributed it to “nerves.” After about six months she consulted a dermatologist, who immediately recognized the “butterfly rash” common to lupus.
Mead got weak, started losing weight and developed kidney and bladder-control problems. Her doctor prescribed steroid treatments and warned her about the sun and stress. But as symptoms subsided from time to time, Mead ignored the advice. She was back in the sun, playing volleyball.
“I got real sick several times before I realized, `Hey, I better listen to this guy.’ “
Mead’s health improved until the birth of her first child, a daughter who arrived a month and a half early but healthy. Mead’s hands and feet turned blue in the cold. Her fingers got so swollen she couldn’t bend her knuckles. She opened doors with the palms of her hands, her fingers sticking straight out. The doctor wanted to prescribe strong pain medication, but she had a baby to take care of.
Later she tried Cytoxan, a chemotherapy that had brought relief to others.
“It just made me awfully sick. I blew up like a balloon. I lost so much hair I had to buy a wig.”
Four months after her last chemotherapy treatment, she found out she was pregnant again. Her son arrived more than two months early and was given a 50-50 chance at survival. Now he’s a healthy 4-year-old.
Mead’s marriage didn’t survive the rocky times. She and her husband separated three years ago and eventually divorced. Once they were apart, some of Mead’s symptoms subsided. She devoted herself to her children.
“This may sound corny, but I feel they’ve been given to me to keep my going. If it weren’t for them, I don’t think I would have made it through some of this stuff.”
Marcia Streepy
Lupus had managed to disrupt Marcia Streepy’s life in so many ways that by 1987, finally forced to use crutches to get around, she figured she would somehow adjust once more and go on.
But with her work as a school nurse and two children to raise at home, the physical demands became too great. She would have to quit her job.
“I had to weigh my responsibilities in life,” Streepy said. “It was a very hard decision.”
In fact, few decisions in Streepy’s life have come without reference to lupus. When she was just 12 years old, her knees and ankles would swell and burn. Her hands hurt all the time. Gymnastics were out.
Sickly and easily fatigued, Streepy was sent to the all-enclosed Catholic high school in Hutchinson, Kan., rather than the public school where her six brothers and sisters had gone.
After her first child was born by Caesarean section, she was in intensive care for three weeks. She had extensive bleeding and low blood count. Doctors removed her spleen a few weeks later. She started taking high doses of the steroid prednisone to settle the flareup.
When it came time to think about another child, she and her husband had no choice: They adopted.
Streepy, who lives in the Kansas City suburb of Shawnee, Kan., has had shingles and pericarditis, an inflammation of the lining around the heart. A loss of blood supply to her knee and ankle resulted in permanent bone damage.
In recent years Streepy’s hands have been spared, freeing her to dedicate more time to one of her loves, painting. She now has a show of 71 pastels and watercolors at an area city hall. You could hear the gratitude in her voice as she described the show: “The work I’ve been able to do with painting in the last five years has been wonderful.”
Edna Newman
For much of her life, Edna Newman tried to figure what she was doing to make herself so sick.
At 20, working for a hospital food service, she thought that being on her feet so much was the cause of her constant joint pain. She got a desk job with the Internal Revenue Service. Soon her hands were unbearably achy. Was it all the typing? She switched jobs again.
“I thought, `Maybe I’m causing this myself.’ “
Newman’s lupus diagnosis came about 20 years after her first symptoms. That’s a long time, she said, to question yourself.
“I didn’t miss a lot of work,” she said. “I pushed myself. I made myself go. By doing that, I put even more stress on my body.”
Meanwhile, while raising her three children, she took in five nieces and nephews. She had to leave her job for the challenges of an expanded family, including how to cook for eight children.
She had hip replacement surgery in 1985. In 1991 doctors replaced her other hip and a knee.
“I feel like a bionic woman.”
Indeed. Newman, who is 48 and lives in Kansas City, Kan., volunteers at Lindbergh Elementary, where her grandchildren go to school. She leads a lupus support group. And she leans on her belief in God to keep a positive attitude.
“Dealing with a negative force like lupus, it will drain your spirits. I stay on my medicine. I keep myself as active as I can. I keep my morale built up.”
Carol Wierman
“They send you home saying, `We can’t find anything wrong with you. You ought to be glad,’ ” said Carol Wierman, who for years was anything but glad about her chronic symptoms. “That’s really frustrating.”
Some of Wierman’s worst symptoms seemed to surface after a car wreck in 1984. But it wasn’t until 1988, when she was hospitalized with pains from pericarditis, that doctors diagnosed lupus.
“My husband was just so relieved at that point, that they finally gave us something to hold onto, something to try to work with.”
“I’m no longer in control,” Wierman recalled thinking. “That really bothered me. When you’ve been able to cope and been in control most of your life, this comes along and turns your world upside down.”
Wierman’s lupus has affected her central nervous system. At times she can’t concentrate enough to drive safely. She has taken trips to the mall, then discovered she was unable to drive home.
Wierman, who is 58 and lives in Raymore, Mo., is a big believer in support groups. She admitted she was put off by the idea at first, thinking she didn’t need to sit in on a bellyache session. Now she leads them.
“I really was negative about it,” she said. “I was determined that I could get through it. But that wasn’t the case. I did have to have help.”
