The many faces of Lupus
In the summer of 1984, Julie Gibbs, an active, healthy young woman, went to the doctor with joint pain.
"It felt like I had severe arthritis with fevers," she said.
Her doctor treated her for bronchitis. She went home. But her journey to a correct diagnosis and eventual relief from the aches and pains that now plagued her was just beginning.
"Everything just started piling on one after another," she said. She was continually treated for her symptoms, but her life had gone from healthy woman in her prime to helpless patient.
In mid-March of 1985, the day after her birthday, she received a gift, of sorts, a diagnosis.
It was lupus.
"I had never heard of it until they said what I had," Gibbs said. "At first I thought, ‘What is it?’ Next is ‘Oh my god, my life is over.’ It’s a scary thing for someone who has no awareness of what it is. It’s like getting punched in the stomach."
Family support helped her through the first few months. Her sister had a friend who had lupus, who helped her to understand a little of what to expect.
"I really wasn’t able to learn much about lupus back then as I wanted," she said.
A week after her diagnosis she was admitted to the hospital with seizures.
"My seizures were so severe, they put me into a medical coma," she said.
The doctors couldn’t revive her from the coma. Her organs began to shut down. She went into respiratory and renal failure. The doctors, who were now treating her for lupus, gave her high doses of Prednisone, a synthetic corticosteroid drug used as an immunosuppressant. Prednisone affects virtually all of the immune system. It saved her life.
She stayed in the hospital another 33 days. She was told she may never walk again due to all that her body had been through.
"I left the hospital walking a little," she said.
A month later she flew to Virginia from her home in the Midwest for follow up treatment and physical therapy. There she completed a walking tour of Mt. Vernon.
"I never had another flare for 14 years," Gibbs said. "I started convincing myself I didn’t have lupus."
She had married and moved to Las Vegas when a major flare hit her in 1999. With her medical records from 1985 in hand, she began looking for a doctor. She went to 15 physicians in two months, she said.
"I was told, ‘You don’t have lupus; it’s all in your head,’ and that nobody went 14 years without a flare up with lupus," she said, adding she was having trouble keeping food down, a classic lupus symptom. "They said, ‘You don’t have lupus, you’re bulimic.’ They refused to believe I had lupus."
They did what most doctors are trained to do, she said. "They treated the symptoms."
That changed in an emergency room on a gurney after a massive stroke. She was again told she may not survive. Her left side was left paralyzed. Her husband, Arlo, sat by her bed, coaching her to try to move a finger, touching his index finger to hers to get her to move just that one digit.
"I wouldn’t feel it," she said. "Finally my finger would twitch after a lot of work. He, more than any rehab center, helped me get back to full strength. I went back to bowling."
Due to that emergency room visit, she was eventually referred to Dr. Garish Daulat, an internist with Community Family Doctors. She has been with Daulat for about five years.
Dr. Daulat, DO at Community Family Doctors since July 2003, said he currently treats between 10-15 patients. Gibbs is one of his best patients due to her vigilance with the disease.
"She is more aware of her flare-ups so she has increased her awareness, mobility and decreased in her pain," he said of Gibbs.
Lupus is often overlooked, Dr. Daulat said, difficult to detect and difficult to diagnose.
"The symptoms can be diffused" as they were in Gibbs, he said.
If he suspects lupus in a patient he looks for a family history, other auto immune disease, rashes and different symptoms affecting joints, muscles and abnormal labs.
"The doctor said I’m in the best health I’ve been in in 10 years, why, I don’t know," she said. "I can’t answer him, but about a year ago I decided that it was time for me to stop being a victim of lupus and start being a survivor."
She does attribute her good health to one person: her husband.
"My husband suffers with it more than I do. He’s the true caregiver, my angel, my hero," she said. "We’ve had a lot of struggles."
It was a shock to him when her first flare up with lupus landed them in the ICU.
"She was in a 14-year remission when we met and was completely healthy so not knowing anything about lupus I didn’t know what to expect," Arlo Gibbs said. "We had been married 9 years before she had a flare."
For those who are dealing with lupus or a loved one with lupus, he recommends that you educate yourself in order to communicate with doctors and medical staff.
"Most of them do not have a lot of first-hand knowledge about lupus," he warns. "Also be flexible. You may have to make some changes in your own lifestyle to be a part of the life of someone with lupus. Be prepared for emergencies, and be able to tell medical staff a health history."
The Gibbses have been through a lot with lupus, strokes that led to severe neuropathy, medications that left her zombie-like for years, and daily wonderings about what new symptom the disease will present to them next.
"Every day you wake up and wonder if you’ll have a new symptom of lupus," she said. "It’s an adjustment."
The couple no longer involve themselves with outdoor activities, a previous love of theirs, due to her lupus.
Her determination to overcome lupus led her to Hui-Lim Ang, founder of Colors of Lupus, whom she met at a conference on lupus at Green Valley Ranch a few years ago.
"I had been thinking of starting up something locally for lupus (patients)," Gibbs said. "When I met her it was a natural fit. I wanted to do something and she was in the process of doing it."
Gibbs is now membership director for Colors of Lupus and offers counsel and an ear to those who come to the group.
"I know what it was like for them," she said. "When I talk about lupus I say it is the loneliest disease you could have. To look at me you would think, ‘She’s not sick.’ But tomorrow I could be flat on my back."
Even your family can get sick of dealing with it. You’re always sick with something.
More than support, they’ve found a place of understanding that doesn’t exist in the world.
"The first person who can understand it that you meet is another person with lupus," Gibbs said. "Letting them talk about their stories and saying I understand, it helps, both of us."
