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Sunday, May 26, 2024

Living with lupus

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Looking at Janel Quarles and Loretta Marte there are no signs of their daily struggles. The extreme fatigue, the joint pain, the skin blotches due to being in the sun longer than 10 minutes, the routine overnight stays in the hospitals and the countless doctor visits are norms for Quarles, 13, and Marte, 44, each living with lupus.

Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, brain and kidneys.

“Lupus isn’t really a disease, but a condition where the immune system goes wacko,” said Dr. Suzanne Bowyer, pediatric rheumatologist at Riley Hospital for Children.

Bowyer says that most of her patients – like Quarles – have “full blown” lupus while many adults experience “the evolution of lupus” because lupus has 11 criteria and to receive a diagnosis patients must meet four of them (see side bar).

“If the immune system wasn’t completely off the wall when a person first goes to see their doctor, more abnormalities may be added over the years until criteria are met,” said Bowyer.

For Quarles, Marte and the other estimated 1.5 million Americans living with lupus, there is no cause or cure.

Janel’s story

Melanie Quarles says her youngest daughter hadn’t been feeling well for nearly three weeks before she rushed her to St. Vincent Hospital’s emergency room in February.

“We actually had a doctor’s appointment scheduled the same day, but Janel was dry vomiting and didn’t look good at all,” she said. “I didn’t take her to the doctor initially because I really thought it would go away. When I saw she wasn’t getting any better, wasn’t eating and losing weight, I knew something was wrong.”

After spending hours in emergency, physicians found that Janel’s kidneys were only functioning at 20 percent and immediately sent her to Riley to visit with a kidney specialist. After two days of tests, on Valentine’s Day Janel was diagnosed with lupus.

“My husband and I were extremely devastated,” said Quarles. “We were scared and worried – scared more than anything else.”

At the time, Janel was so fatigued she couldn’t sit up in her hospital bed, talk or eat. Due to the conditions of her kidneys, she was unable to use the bathroom as well.

In the meantime, Melanie took a leave of absence from her job staying at the hospital night and day waiting for Janel to improve while her husband continued to work. The parents also had to balance making sure their oldest daughter Najae, 14, was still being taken care of as well.

Quarles admits her emotions during the month Janel was in the hospital were up and down.

“I was confused, mad, couple times I felt lonely and wondered, ‘why us?’” she said. “But Dr. Bowyer consistently reminded us that Janel would get better and I had to realize that we had to let the medication work.”

“It was scary,” admits Janel.

After spending a little over a week on dialysis, Janel’s kidneys began to improve, her appetite returned as did her smile. Her family was looking forward to taking her home and Janel was ready to return to school.

However, the day before she was to be released, an unexpected side effect of lupus scared and confused the family once again.

In the same way lupus attacked Janel’s kidneys, it began attacking her brain as well.

“That was the hardest part,” says Quarles.

Instantly overnight Janel was unable to perform tasks she had learned as a child such as using the bathroom on her own, bathing and brushing her teeth. She was unable to sleep and constantly had to be reminded of the names of close family members.

Again, Quarles reminded herself to trust the medication and trust God.

“During the times when I was afraid, worried and nervous, I still stood on God’s word that his will was going to be done,” she said. “Faith alone was enough to help me when I was crying at night and Janel wouldn’t go to sleep. We were scared, but we had faith.”

Janel, who had missed the second semester of her seventh grade year, was able to be tutored once she got out of the hospital and joined her classmates for her eighth grade year when school began in August.

The nine medications she took when she returned home has been slimmed down to three.

“I was happy to go back to school because I really missed my friends,” Janel said.

Adds Quarles, “We have to watch Janel carefully. Any sign that’s unusual we have to take her to the doctor. But she’s doing fine and we made it.”

Loretta’s story

Unlike Janel, Marte experienced the evolution of lupus.

She began feeling ill in 1999 while a customer service manager for an IBM distributor and taking classes at Indiana Wesleyan in its LEAP program.

“I was stressed at the time,” she says. “I had one of the largest teams at work, going to school and I still had to be a mom.”

Around the time of her final class, Marte says she began to get extremely tired but didn’t equate it to being sick because of the strain of work and school.

“But no matter how much I slept, I couldn’t eliminate the fatigue,” she said. “I would wake up and feel like I never went to sleep.”

At the time Marte was also losing weight and didn’t have a desire to eat. Finally concerned, Marte went to see a physician and the evolution began.

“He thought I was just anemic,” she said.

Days later, Marte received a letter saying the doctor wanted to see her because her white blood count and red blood count were tremendously below normal. Back at the hospital Marte was tested for every disease and condition, including AIDS.

Still, no diagnosis.

“Tests kept coming back inconclusive,” she said. “They knew my cells were low but didn’t know why.”

Throughout 1999, Marte was back and forth in the hospital with failed diagnosis after another. Frustrated, she says in 2000 she quit going.

In December of 2000, Marte got a bad ear infection followed by a bad case of bronchitis. In January of 2001 Marte noticed large purple bruises on the tips of her fingers and toes – telling signs of lupus.

However, doctors told Marte she likely had an infection in her heart. After three years of frustration, uncertainty and misunderstanding, Marte was told she had lupus.

“I was so relieved,” she said. “I finally knew what was wrong and was able to research and learn more to ask questions to get better.”

Marte’s coworker Penny Surber calls her longtime friend determined and “a trooper.”

“She was at work everyday but constantly fought to know what was wrong,” she said. “When she found out she had lupus she strived very hard to learn about it and improve her life. If anybody can find a cure to lupus, she can.”

After such a distressing time, Marte advises women who are currently going through the “evolution” to keep fighting for the right diagnosis. Of those who have lupus, 80 percent are women.

“Don’t second guess yourself because you know your body,” she said.

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