Living With Lupus is Not An Easy Road

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But, in the four years since Amy Kaderi-Mallard was diagnosed, she has developed the strength to confront her condition on a daily basis with realistic optimism, knowledge of the disease and a determined self-awareness. Lupus is a chronic autoimmune disease: a long-lasting sickness in which the human immune system, for reasons unknown, becomes hyperactive and turns on its own body, attacking normal, healthy tissues as if they were a virus.

Because the disease affects sufferers in varying degrees of intensity and can attack a number of different areas of the body, misdiagnoses are common. Some go 20 years or more never even knowing they have the disease. A sudden flare-up can be triggered by such seemingly innocuous factors as stress, illness, or sunlight.

Four years ago, Amy was only vaguely familiar with the disease. She had always experienced occasional outbreaks of rash on her hands and arms, usually accompanied by a headache, but paid it no special heed. When, during a particularly stressful period of her life, these symptoms became accompanied by severe soreness and a fatigue that confined her to her bed, she had no idea what was ailing her.

Thanks to the attentive eye of her family doctor, these symptoms did not go misdiagnosed. Amy underwent a series of tests and it was determined that she suffered from Systemic Lupus. The fatigue and soreness brought on by the disease eventually forced her to quit her job. Later, chemotherapy became necessary when the disease began to affect her kidneys.

"The most important thing is to get diagnosed," Amy said. "Take a stab in the dark and see if that is what it is. There are things that can be done. There is hope." While there is as yet no cure of Lupus, modern medicine can treat and, to a certain extent, control the disease, as well as effectively tend to afflicted organs and tissues. With misdiagnosis, however, comes mistreatment and ineffective medication. Yet costly drugs can only fight one front in the war against an oppressive illness. A person's desire to overcome the disease almost always plays a central role.

Initially, the diagnosis filled Amy with dread. Amy feels the word "disease" is a powerful one and everything from medical pamphlets to Hollywood movies can compound one's feelings of helplessness or guilt. While emotional suffering is enough to strengthen the affects of any illness, Lupus is particularly burdensome because the very bouts of stress and depression it causes can make the disease flare up once again. To help overcome this, Amy turned to two sources of inspiration in addition to her family: the Lupus Foundation of America, a nationally recognized support group for Lupus sufferers, and her own fertile imagination.

The Lupus Foundation allowed Amy the chance to further educate herself about the disease as well as fraternize with others who live their lives around the symptoms of Lupus. Members of the local Winchester Lupus Support group, in reference to their own sensitivity to sunlight, call their support group "The Impatiens." "Our group has members who have just discovered what is wrong with them," Amy said, "as well as women and men who have suffered for decades with the pain and fear that follows the knowledge that they, or their loved one, will have to live all their lives with an incurable disease."

Such members as Princess Samples and Mary Pounders, bother nurses, provide strong examples of optimistic perseverance to other local area Lupus sufferers like Amy, she said. "They have run the gamut of every imaginable medical test and treatment for this disease," Amy said. "They have cared for countless patients and been patients themselves, and now they dedicate their lives to helping others deal with Lupus."

Much like renowned author and Lupus-sufferer Flannery O'Connor, Amy has also turned to writing to help cope with her illness. "When I resigned from my job, I hated it," she said. "I needed to be active." Amy began writing a romance novel. Amy credits the novel not only as an escape but a truly motivating force in battling the fatigue and soreness of Lupus. Each morning, she forced herself to get out of bed and tend to chores around the house, all so she could return as soon as possible to the world of her novel-in-progress.

When Lupus affects the central nervous system, one of the oft-encountered symptoms is cognitive dysfunction. This fear of memory loss caused Amy to have an even greater zeal for getting back to work on her book each morning and keeping her ideas fresh. Along with fatigue, one's thought process can become confused, affecting memory and concentration. Whole ideas or the ability to express them in writing can simply wash away. While Amy had not experienced memory loss from Lupus, the fear of loosing whole characters and plots before she could commit them to paper was ever present.

Today, the outlook for Amy is a positive one. She is in remission, but knows that another flare-up is always likely. She stays out of the sun as much as possible, keeps an eye on her kidneys and tries to stay physically active. She attends meetings and benefits with her fellow "Impatiens" and her novel, just four chapters shy of completion, is already gathering some interest from publishers. Most important to Amy, she has a loving family to stand by her through all the highs and lows. "Right now, we're all in remission," she said, "and I say 'we' because my husband and kids suffer through it with me."

The local Lupus Support Group meets the second Tuesday of every month from 6 to 7:30 p.m. at the Southern Tennessee Medical Center Cafeteria in Winchester. "We want to let others like us know that we are here, ready to lend an understanding ear," Amy said, "and to reassure them, ourselves and our loved ones that we intend to fight for our lives and stay around as long as we can." Those interested in attending meetings of the local Lupus Support Group can call 877-865-8787 for details. The Lupus Foundation of America's national toll-free hotline can be reached at 1-800-558-0121.

©The Tullahoma News 2004

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