Some days are a struggle for a Farmington woman with autoimmune disease.
By Samantha DePoy
Staff Writer

FARMINGTON – Kristen Cousineau’s body is as unpredictable as the weather in New England. She could feel fine and then five minutes later – exhausted, feverish, achy and riddled with pain in her joints and around her organs.

That’s how as a senior at the University of Maine at Farmington, Cousineau, who now works in UMF’s Development and Alumni Services Office and lives in Farmington with her husband, Brody, discovered she had lupus.

It’s a chronic autoimmune disease that for unknown reasons, causes the immune system to attack the body’s own tissues and organs. It strikes an estimated 1.5 million Americans.

For most people, lupus is a mild disease affecting only a few organs and can be treated with medicine. For some though, serious and life-threatening problems, such as kidney failure or major infection, can occur.

One day, she was teaching aerobics, going to classes, being 21.

The next morning when she woke up, she felt exhausted and had flu-like symptoms including soreness, swelling and aches. As she slept, an unknown combination of genetic and environmental factors clicked, and she became sick.

“It can happen to anybody, at any time,” Cousineau explains. “It’s the luck of the draw. At this age, we think we are invincible. And in one day, I realized I wasn’t.”

Two months later, after diagnosing her with everything from mono to the flu, her doctors finally figured out she had lupus, a disease that scientists have yet to find the direct cause of, or a cure for.

Her first thought, Cousineau says remembering, was, “Am I going to die?”

Through her own research and picking the brains of her doctors, she learned that no, 80 to 90 percent of those with lupus live regular lifespans.

Instead, she would have to live her life paying close attention to her body and keeping doctors aware of any pain or discomfort she felt.

And, she had to get used to admitting when she felt tired, and resting accordingly, which is tough for a 20-something.

“I work as hard as I can Monday through Friday, Saturday and Sunday are my sleeping days,” the striking dark-haired 25-year-old woman with a generous smile explains. “If I have a good day, I milk it for all it’s worth.”

If she has a bad day, she stays home and sleeps.

Although her diagnosis was a surprise to her, Cousineau fits the profile.

Lupus is two to three times more prevalent in people of color, according to the Lupus Foundation of America, including African-Americans, Hispanics, Asians, and Native Americans, like Cousineau.

Ninety percent of those affected are women, and 80 percent of those affected develop lupus between the ages of 15 and 45, like Cousineau did.

‘Do you know Kristen Cousineau ?’

The disease has greatly impacted her life. Swollen joints. Exhaustion. Pain in her chest as fluid builds up around her lungs and heart.

“I open one eye each morning and wiggle everything. I wonder what’s going to be wrong with me today. There’s like a war going on in there,” she admits of her body, and then with a giggle, “It’s like, this doesn’t fit into my schedule.”

A fitness lover, she uses mild exercise like walking, going to the gym and a lot of stretching as therapy.

On good days, she takes nine pills. On bad ones, up to 15. Sometimes, she has to get steroid injections, which cause her face to swell. One day, she remembers, the swelling was so bad someone actually asked her if she knew Kristin Cousineau. She was embarrassed, said she knew her, and put her head down and walked on.

The medicine she takes is similar to that taken by people with arthritis – to keep the swelling down and the joints and muscles lubricated. It’s expensive, upwards of $100 a month for pills, often more, and regular trips to see doctors in Portland and Boston.

Opening up

According to a survey done by the LFA of those with lupus, 65 percent of those surveyed cited pain, 61 percent lifestyle changes and 50 percent emotional problems because of the disease, as the most difficult coping factors. Again, Cousineau fits the profile.

For the first few years, Cousineau was quiet about her illness, letting only work and her family and closest friends know. “If I didn’t talk about it, it was almost like it wasn’t there.”

This summer, she finally opened up, realizing that many people may have the disease and because it’s so tricky to diagnose, not know it. “My life and my family and friends are too important to me to let this win.”

October is Lupus Awareness Month so Cousineau spoke about the disease at the Farmington Rotary’s monthly meeting.

She has become a research nut so she can educate others. She writes to her legislators if a bill regarding money for finding a cure is on the table. She raises money. She treasures each day and prays for a cure.

“I am not embarrassed anymore, just scared. I want to find a cure for myself as much as everyone else. You never give up that hope. If I have enough people praying, maybe something will happen,” Cousineau says hopefully.

“I believe God wouldn’t give me anything I can’t handle.”

For more information about lupus, log on to the Lupus Foundation of America’s Web site at www.lupus.org.

[email protected]