Women’s Health Week Focus:
Living with Lupus
Part 2 of 3
Teaching (and Learning) with Lupus
Patti Eggleston was a full-time college student finishing her fall semester back in 1976. It was a busy period of her life — not only was Patti in the middle of final exams, but she had a husband and an active three-year-old to care for. On top of it all this she was suffering from nausea, fever, headache and extreme body pain.
Patti went to the university health clinic for help. “After listening to my symptoms, the doctor told me his diagnosis, ‘It sounds like the later stages of gonorrhea,’” Patti remembers him saying. “I replied, ‘Interesting. My husband’s been my only partner and he doesn’t have it.’”
It would take another four years of dealing with symptoms like body aches, fever and episodes of ‘brain fog’ before Eggleston would finally get a diagnosis of systemic lupus erythematosus.
Considered an autoimmune disease, lupus is a condition where a person’s immune system attacks his or her own tissues and cells. In a healthy individual, the immune system attacks foreign invaders like bacteria and viruses. Why the body’s immune system turns against itself in lupus patients is still unknown.
Today Patti is an educator and athlete: she’s an Assistant Special Education Director at the Wenatchee School in Washington who swims three mornings a week starting at 4:45 am plus strength training and cycling on the other two.
But Patti vividly recalls the day in 1980, four years after her symptoms began, when she finally got a diagnosis. She was 25 and had gone to the bank to make a deposit at the drive-up window. “Despite all of my effort, I could not open that plastic tube — it was just too painful. Immediately, I drove to the walk-in clinic down the street.”
The clinic doctor listened to her symptoms and promptly scheduled Patti to see a rheumatologist later that day. The specialist put her on an aspirin regimen and ran lab tests on her blood and urine. Within a week, Patti was back in the rheumatologist’s office facing the lab results, which determined that she had lupus.
“When I was first diagnosed, I felt sad and alone. I knew nothing about lupus and neither did my support system,” Eggleston recalls. “I told my rheumatologist that I needed to educate myself on lupus and learn to cope with it to the best of my ability.” Her rheumatologist recommended a doctor at UCLA who had experience treating several other lupus patients and encouraged her to join the Pacific Northwest Chapter of the Lupus Society (now Foundation). Not only did Patti join but she also started the Greater Wenatchee support group.
It’s common for people with lupus to experience a range of symptoms affecting different parts of the body with joint inflammation, skin rashes, nausea, fatigue, ‘brain fog’ and kidney problems, as the most typical ones. There is no cure for lupus and the medications, many of which suppress the immune system, can be difficult to endure; prednisone and other steroids are notorious for increasing one’s susceptibility to side infections.
“The day of my diagnosis, due to kidney and severe joint pain, I began taking prednisone, imuran and plaquenil.” A few years ago, Patti developed an allergic reaction to the plaquenil and stopped that part of her treatment. And after being on prednisone for over 28 years, she discontinued that steroid and added lisinopril and crestor, two medications that are typically prescribed for cholesterol patients but that also can be used effectively to support kidney function.
“In the beginning, living with lupus was of course an adjustment. But once I met with Dr. Hahn at UCLA, that began my journey of ‘attitude and gratitude’,” says Eggleston, referring to the more positive approach that she adopted over time as she continued to learn more about her autoimmune disease.
Living with lupus “has forced me to reflect on everything in my life including my belief system, personal goals, exercise and eating habits,” Patti explains. “I celebrate the little things in life.”
While living with lupus can be a challenge, it’s a challenge that she’s managing. “I have lupus but lupus doesn’t have me,” she proclaims. “First thing in the morning, when my feet hit the floor and the pain shoots through my body, I take a mental note of what hurts, what my schedule is for the day and what attitude I will take to get through it. I push through routines and daily rituals. I have never used it as an excuse for not doing something.”
Patti wants people to know that lupus and other chronic diseases are often an inconvenience but not necessarily something to pity. And she is happy to share her experience with those who are curious. “Please, talk to me, I’d love to enlighten you about lupus,” says Eggleston.
The best lesson that Patti learned from her mother was to remember the three c’s: compassion, commitment and courage. And that’s what drives Patti to get out of bed on cold early mornings and hit the pool before dawn. Her focus is on working with her colleagues and seeing her students move forward — not on her lupus.
About the Author:
Jane Heisey is a content specialist who writes and develops creative content for small- to medium-sized companies.
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