Disease changes Kristie Bauer’s life
Lupus is a little understood and complicated disease. One Stillwater resident knows that all too well.
Kristie Bauer was diagnosed with lupus, an autoimmune disease in the news with the recent the death of Sasha McHale, the daughter of former University of Minnesota basketball star and Houston Rockets coach Kevin McHale.
Bauer was diagnosed with lupus at 17 when she was in high school. She’s been dealing with lupus for about eight years.
“When I was going to the doctor I vaguely mentioned that my joints hurt and he sent me to some other specialists as well. I was really lucky because it only took a few months for my diagnoses to occur,” Bauer said. “Lupus is weird because there’s really no set test or actual way to determine lupus is what you have. So they started treating me and it’s been confirmed that this is what I have.”
Dr. Emily Gillespie, an immunologist, lupus researcher and assistant professor of medicine at the University of Minnesota, said lupus tricks the body’s immune system into attacking its cells, tissues and organs. Symptoms vary by patient but the ones that might indicate lupus is present are a butterfly rash that stretches across the patient’s nose and cheeks, fatigue, low fever and joint pain that could indicate a number of others issues as well, making diagnosis difficult.
Bauer said she has good and bad days when it comes to pain caused by inflammation. Triggers that cause her condition to worsen are usually stress and weather.
“The biggest thing it effects are my joints and muscles, and I go through stages where my flare-ups are really bad,” Bauer said.
According to the Lupus Foundation website, flares are sudden changes in disease activity. It can occur at any time, even when symptoms have gone away for some time. Flares range from mild (the appearance of a rash) to severe (fluid collecting around the heart). Bauer has seen the spectrum.
“When I have a flare up I can barely get out of bed and there are days when I have to leave work early. Some days when I had work I’d have to have someone pull my car up to the building and have my husband meet me at my car to help me out of it,” Bauer said. She added that she has been admitted to the hospital in the past because a flare inflamed her heart causing pericarditis.
“It can effect your life pretty dramatically, and sometimes these periods can go on for months,” Bauer said.
When Bauer spoke with the Gazette Tuesday, she said she was having a good day.
“Today I’m doing very well and I’m grateful to be doing as well as I am,” she said. “There’s still some sort of pain I have to deal with every day but it varies. Half the time when I think about it, like right now, my hip hurts, but its not really bad. I think I’ve grown used to low-grade pain over the years.”
Gillespie says lupus is triggered by a combination of genes and environmental factors. One to 1.5 million cases exist in the U.S. and women, like Sasha McHale and Bauer, get the disease nine times more often than men, children and older people although any one at any time can be affected by it.
“Lupus is very unpredictable,” Bauer said. “It’s so random and it does whatever it wants really. I have no control over it and it drives me crazy but I control it by raising money for future research so I don’t have to hear stories like Sasha’s, and so others don’t have to deal with what I do.”
Gillespie said that research on lupus treatments is still going strong. New drugs have been recently introduced, many clinical trials continue, and researchers like herself, are seeking ways to determine when flares occur so doctors can treat their patients sooner.
Although Bauer believes it’s hard for her family and friends to watch her deal with lupus, she said their support has been wonderful, and she encouraged those with lupus to find support and a doctor they like to help them deal with the disease. She also encouraged people to stay positive.
“Though it does have a mind of it’s own, I think I’ve gotta take the good with it too. It gives me a different outlook on life,” Bauer said. “The tiny things are very hard for me: walking, picking up a glass, and breathing sometimes if I’m in a flare up. When I’m able to walk and do things and be active I’m very thankful and grateful.”
After a pause Bauer added.
“It’s nice to have that view on the world, and sometimes, though I wouldn’t wish Lupus on anyone, I think I’m happier because of it. You’ve gotta take the silver-lining and pull the positive out of every situation no matter how bad.”
To learn more:
The Lupus Foundation of Minnesota hosts a conference from 9 a.m. to 4:30 p.m on Sat. Dec. 15 at Hilton Minneapolis-St Paul Airport/Mall of America in Bloomington. For more information go to www.lupusmn.org