A year of uncertainty

Molly Pepper lived a dream anyone could envy. By her late 20s, the Minnesota native had been an international fashion model, married a handsome Australian actor named Michael Piccirilli, and given birth to their daughter, Sophia. Settled in Sydney, Australia, she no longer raced off to photo shoots in London, Paris, and Tokyo, yet she was in even more demand as a model.

“I thought modeling was done when I had the baby six years ago, but then my work shifted to commercials and catalogues, which ended up being better money,” says Molly, now 33. “It was amazing to have children and think I could keep modeling forever.”

But with the birth of their son, Orlando, in March 2005, things began to change. She brushed off constant exhaustion as normal for a busy working mother, until an ironing board and a milk bottle pointed to something more serious.

Following is a chronicle of how Molly struggled to find a diagnosis and her determination to live a full life as wife and mother in the face of chronic illness.

Late 2006
Staying with her in-laws while her house was being renovated, Molly languished on the couch as her mother-in-law ironed early one evening. Asked if she wanted to use the board, Molly confessed that she sent everything out because she lacked energy. If that was the case, time to see a doctor, her mother-in-law replied. “I was so offended, but she was right,” Molly now admits.

January 2007
Molly continued to blame exhaustion while Michael was off shooting a movie in Serbia. She put off visiting a doctor.

February 2007
New symptoms appeared—joints ached, legs swelled. When she and Michael went camping, she couldn’t get up after kneeling to wash dishes. Mornings, her arms wouldn’t move. Still, she believed her condition was “just a phase that would go away.” Shocked to see Molly’s legs three times their normal size, a friend insisted she see a doctor, who suspected an autoimmune disease, such as rheumatoid arthritis or a strange virus. He prescribed a corticosteroid used to treat a wide range of inflammatory illnesses, but Molly balked because she feared ballooning weight. “My livelihood depended on how I looked.” She agreed to a lower dosage.

March 2007
Michael was filming in Melbourne. Molly’s symptoms intensified. Preparing the children’s cereal one morning, she couldn’t twist the cap off a plastic milk bottle. In tears, she called a neighbor, who hurried over to open the milk, take charge of the children, and send Molly off to sleep for the rest of the day.

Working as a fitting model for a clothing manufacturer, she couldn’t pull a pair of narrow slacks over swollen ankles. The designer kindly observed that Molly was “a little swollen” and decided against making the pants any looser.

April-May 2007
A rheumatologist searched for strange viruses. Blood tests revealed arthritis and a positive antinuclear antibody (ANA) test—often, but not always, an indicator of lupus. He discounted lupus, though, because she didn’t have significant rashes or other lupus signs. He looked into other autoimmune diseases.

Then her stomach started to swell. Doctors treated her for Crohn’s disease, a chronic bowel malady. But a battery of tests ruled out Crohn’s; her stomach deflated. Perhaps she was suffering stress, doctors suggested. “I was scared, you know,” Molly says. “It was not like me to be like this. I wanted to find out what it was so I could fix it.”

June 2007
“Just getting used to feeling terrible all the time—nothing changed,” she remembers. She researched arthritis and autoimmune diseases on the Internet, one by one. Lupus ended up at the top of her list.

July-August 2007
Homing in on a diagnosis, doctors prescribed Plaquenil (hydroxychloroquine sulfate) for lupus. In late August, blood tests—“the last pieces of the puzzle”—confirmed their suspicions. She received the news at her last appointment before relocating to Los Angeles. “I was happy in a weird way. Finally I could tell friends what was wrong.”

September 2007
Molly looked at houses, found Sophia a school, and signed with a modeling agency. “Things couldn’t get more stressful, but I really didn’t have any flare-ups. I think the drugs were kicking in. I had energy to get through all that.” But she had no idea how to find a new doctor. Michael suggested she track down the author of The Lupus Book, which a lupus patient in Australia had recommended. It turned out that its author, Daniel J. Wallace, MD, practiced in West Hollywood. “Maybe there was another reason besides work that led us here,” she muses.

October 2007
Dr. Wallace was on vacation, but his associate, David Hallegua, MD, who coauthored a book with him on living with lupus, saw her immediately. “The nurses must have thought I was crazy,” Molly says. “I walked into the office with a stack of medical records and said, ‘Hi, I have lupus. I’m desperate. I need more pills.’ ” A week later Dr. Wallace did more tests, confirming the lupus diagnosis and discovering a thyroid condition as well.

November-December 2007
Molly investigated two drug trials suggested by Dr. Wallace. She was accepted into the one of her choice, which required participants to have lupus under control. Molly had no organ involvement; her rash looked more like peach blush. The trial began the first week in January. Then Molly discovered she was pregnant and had to withdraw.

Early 2008
Molly approached the high-risk pregnancy with her usual laid-back attitude. “Many women my age with lupus do have babies. You can get better or get worse during the pregnancy.” She is too busy to fret.

A year after her first medical consultation, she was off to audition for an automobile commercial. And she had begun a support-group trial to help lupus patients deal with the disease psychologically. “When you have lupus, you don’t look sick, so people don’t understand it.”

She left the first session wondering if she understood it herself.

“Maybe I haven’t accepted it. Why have I done this to myself—this move in the middle of being diagnosed with this disease? But that’s how I am when something goes wrong. I like to shake it up, not dwell on it.”