Living with lupusLocal teen aims to promote lupus acceptance
Maddie Spiker often longs for a day when she can go outside, spend several hours with her friends and not get tired.
In her hometown of Canton, she loves to go horseback riding, four-wheeling, mudding and camping — but many days her good time is spoiled by a swooping feeling of fatigue and she has to stop and take a nap.
Spiker, like the other 1.5 million Americans who are affected, suffers from lupus, a chronic, autoimmune disease that can damage skin, joints and organs inside the body. In lupus, something goes wrong with your immune system, and creates auto-antibodies that attack and destroy healthy tissue. These auto-antibodies cause inflammation, pain, and damage throughout the body.
Common signs and symptoms of lupus include extreme fatigue, headaches, painful or swollen joints, fever, a butterfly-shaped rash across cheeks and nose, sun- or light-sensitivity, hair loss, abnormal blood clotting, fingers turning white and/or blue when cold and mouth or nose ulcers.
Spiker, who turns 17 this month, recalls struggling with the disease since she was a child — even before she and her mother, Becky Morgan, knew what her diagnosis was.
“Since I was 5-years-old, my mom was always determined that there was something wrong with me,” Spiker said in her soft southern accent. “I remember crawling in the kitchen because my legs were hurting.”
After visiting doctor after doctor, Spiker tested positive for lupus at age 13.
“We were thinking it was lupus, but when we got a name on it, knowing that she would have to deal with this the rest of her life was kind of hard,” Morgan said. “It’s a struggle but she’s done so well. She doesn’t complain — all I can say is she’s very positive and she does what she has to do.”
“I used to look at the kids running around, while I was lying under a blanket,” Spiker added. “I would always be in bed, passed out until supper with high fevers.”
Like many girls her age, Spiker has an eye for fashion and is hoping to attend Haywood Community College in the future to study cosmetology. She is currently enrolled in a high-school completion a program at HCC and is expected to graduate in May.
“I’m all about fashion — and I chose cosmetology because I love makeup and hair,” Spiker said while looking down at her sea foam green dress and brown cowboy boots. “My dream is to one day open up an old (beauty) shop. I am worried my hands will get tired, but I want to do what everyone else does. God has put a lot of strength in me to heal me, and I feel like he will do it for me.”
Spiker does her best to live life as a normal teenager despite her chronic fatigue, sensitivity to light and severe headaches. She takes medication for her symptoms and takes naps during the day to combat the illness, but there are still something’s she can’t do.
“I can’t go hiking, I can’t go to the lake,” Spiker said. “I’m always going to get tired, and when I do I get sick. Even like when I’m going to the store, I always have to make sure I’m not too tired and won’t push myself.”
But Spiker is excited about attending prom this year with her boyfriend, Alex Mehaffey, who is a senior at Pisgah High School. Though prom may be tiring for her, she is not worried because she knows Mehaffey understands her disease.
“Whenever I’m tired, he takes good care of me,” Spiker said, while glancing at Mehaffey with a smile.
Rallying Lupus support
Spiker said she spent many years being angry about her illness. Wishing she could be just like everyone else, she refused to tell her friends at Canton Middle School about her disease.
“I never wanted them to look at me and think I’m different,” Spiker said.
But one day, she read about the Lupus Foundation of America online, and it completely changed her perspective.
“I saw this one 13-year-old who wrote about how she was tired and wanted to fit it so bad, and I was like ‘Oh my gosh that sounds just like me,'” Spiker said. “So that’s when I came out on Facebook and everyone has been really supportive.”
After realizing that she wasn’t the only person affected by lupus, Spiker decided she wanted to raise money for the Lupus Foundation of America to help other people like her.
“I want to help younger kids be OK with having it,” Spiker said. “I want to meet other people who have it so it helps (me), and at the same time get to help other people.”
Spiker recently set a goal to raise $500 for the Lupus Foundation of America and she’s determined to make it happen. She's already raised about $350 through various fundraisers, and is expecting to raise more than her goal.
On April 5, Spiker and Morgan put together a yard sale at the Central United Methodist Church in Canton in support of the Lupus Foundation. The yard sale was a big success, raising a $250 donation for the foundation.
In addition, Morgan and Spiker are currently raising money for the 2014 Walk to End Lupus Now event, which will be held on May 17 in Martin Luther King Park in Asheville. The two have registered their own team called “Team Daisy” and will be walking during the event..
“It’s really helped her to help others,” Morgan said. “It’s very empowering.”
Spiker is also selling raffle tickets for $1 before drawing a winner for a Mother’s Day basket filled with several items donated from local businesses. So far, the basket includes a free manicure/pedicure package, free tanning package, free haircut, candles, foot cream, flowers, a gift certificate to Sid’s on Main and more. The raffle will end sometime in May, and all the funds raised from the raffle will benefit the Lupus Foundation of America.
Anyone who wishes to support the foundation is encouraged to make a donation or join “Team Daisy” online by visiting www.walktoendlupus.kintera.org/asheville/daisies. Anyone interested in purchasing a raffle ticket should call Morgan at 828-550-5041 or call the Central United Methodist Church at 828-648-7270.