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VNA of Care New England

In Her Own Words: Living With Lupus

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After eight years spent trying to find out what was wrong, Sharon, 51, learned she had lupus in 1989. She courageously deals with the challenging changes the diagnosis forced her to make.
What was your first sign that something was wrong? What symptoms did you experience?
Things in my life were wonderful. I had a great husband and job. But I always felt so tired, an overwhelming, total exhaustion. And then all my symptoms began and continue to this day. I have joint pain, and my knees and ankles swell to three times their normal size. I get what they call a butterfly rash on my face. And stress can cause a flare up, then all the symptoms get worse.
What was the diagnosis experience like?
When I told my doctor about feeling tired, he said I was depressed and gave me an antidepressant. That didn't stop the fatigue. Then I was told it was all in my head. Finally, I thought it might be food allergies and went to see an allergist. He did some blood work. When I went back for my results, he asked if I had ever heard of lupus and referred me to a rheumatologist. She explained why I felt so tired and hurt so badly.
What was your initial and then longer-term reaction to the diagnosis?
I came home and ran to the library for more information. The only materials were outdated, saying I would likely live only five years. It was horrifying to think my life was over. I was 39. Then I contacted the Lupus Foundation of America. It's incredible how much the organization has helped me. One thing I learned is that it often takes a long time to be diagnosed, because lupus mimics a lot of diseases.
My husband and I re-evaluated our entire lives. We look at things differently now. When I was diagnosed with lupus, he had me write down a list of things I always wanted to do, places I wanted to go. We do one every year, from exploring the rocky Maine coast to hot-air ballooning to a helicopter ride over the Grand Canyon. No one lives forever, and we don't know how much time is left.
How do you manage lupus?
With lupus, they don't know the cause, and there is no cure. They treat the symptoms. I was started on steroids, then an antimalaria drug. It helped for about two years. Then the side effects became worse than the disease, a real catch-22. I'm now on a medication that suppresses my immune system, an anti-rejection drug. So I have to be careful where I go, watch out for germs, and call the doctor if I feel sick. A cold can turn into pneumonia.
Did you have to make any lifestyle or dietary changes in response to lupus?
I continued working for several years after my diagnosis. But I'd fall asleep on my lunch break and not wake up until 3 p.m., and I started making mistakes. I couldn't drive. My employer was great, putting a computer in my home, which let me rest. Then one day, I couldn't remember how to do one of the procedures that I had written when healthier. My cognitive skills were failing somewhat. I knew the mistakes reflected on my boss. When the doctor said it wasn't going to get any better, I decided to stop working.
I have to stay out of the sun. I moved to Florida because I love the beach. Now I can't go to the beach, except after sunset. I don't go out in the boat. I can't scuba dive. My husband is a diver too, but now he goes with friends. It's hard. I pretty much eat vegetarian, with no preservatives, very little meat, and no fast food. I do chair exercises three times a week. It's hard, because I hurt. But I want to keep my heart and other muscles strong. More than anything, I've learned to overlook things and to accept things.
Did you seek any type of emotional support?
I saw a psychologist, which helped me deal with having a chronic illness that seemed to be taking over. It helped me learn to say "no." I started attending a Lupus Foundation support group. I raised my hand to volunteer for something and soon became the chapter president by default.
Does lupus have an impact on your family?
My husband is very understanding. My tendency is to get things done, not let lupus stand in my way. Sometimes, when I'm having a flare up, he grounds me and reminds me to rest.
What advice would you give to anyone living with lupus?
I always suggest lupus patients seek counseling, because it helps you understand what you are going through. Educate yourself. Learn to listen to your body and not overdo it. Find a doctor you like. And contact your local chapter of the Lupus Foundation for support and information.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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