Overcoming disease inspired LV woman

Annie Flanzraich

Friday, July 1, 2005 | 7:50 a.m.

WEEKEND EDITION

July 2-3, 2005

Forty-seven-year-old Cindy Nolen enjoys confounding her doctor and proving him wrong.

"He, still to this day, shakes his head and says, 'You shouldn't be here today'," Nolen said at her Northwest Las Vegas home Thursday.

She said he often tells her: "You are a miracle, there is nothing we did that you should be standing here and doing as well as you are doing."

But Elaine Kelley-Saunders, Nolen's sister, said if the doctor had known Nolen better before he began expecting her autoimmune disease would kill her, he would have realized that she would not surrender to it.

"That's Cindy," Kelley-Saunders said.

Nolen has scleroderma, a chronic connective tissue disease that affects about 300,000 people in the United States. One of the more visual signs of the disease is a hardening of the skin. In some cases it can also affect blood vessels and cause damage to internal organs like the lungs, heart, kidneys, esophagus and gastrointestinal tract. It can also cause fatigue .

For Nolen, it has also been an inspiration.

Nolen is president of the Las Vegas chapter of the Scleroderma Foundation and was just recognized as the organization's national Volunteer of the Year in June. She won the award because of her efforts to bring awareness about the disease to the public through appearing on local radio talk programs and in service announcements with Rita Rudner.

"Cindy just does a lot," said Chris Underation, a spokesman for the Scleroderma Foundation. "She either has an exceedingly high energy level or she just pushes through those problems."

Nolen attributes her motivation to spirituality and a positive attitude.

Nolen was diagnosed with the disease 10 years ago. In the first five years the disease, coupled with anemia, drained her of all her energy. Just getting from her upstairs bed to the couch downstairs took everything out of her, she said. In 2000 the disease raised her blood pressure, which landed her in the hospital in a coma. Her body began shutting down, especially her kidneys, to the point where doctors to family to prepare funeral arrangements.

Kelley-Saunders remembers when Nolen was given her last rites.

"It was very difficult," she said. "You just kind of go on automatic pilot, I guess."

Nolen had moments of wakefulness during her coma, however, and during one of them agreed to begin dialysis. That decision eventually saved her life.

"If I'm gonna die, I'd rather die trying," Nolen said about her decision.

Five years later she is doing things she never thought she would be able to do before the coma, such as learning to play golf again and traveling around the country to visit family and participate in conferences for the national Scleroderma Foundation.

"Whatever that disease was going to do, it did in those first five years," Nolen said. "Ever since then I've gotten better and better."

Fifteen months after going on dialysis, Nolen's blood pressure stabilized and she was able to end the treatment. After nine years of taking steroids to help with joint pain Nolen stopped taking the medication a year ago.

"Why was I given a second chance?" was one of the questions she asked herself after she recovered from the coma, she said. "What do I do with it now?" She said that after her recovery she fought the idea of being defined by her disease.

"I thought, I'm not just scleroderma, that isn't who I am," she said. But then she said she realized it is.

"This (being involved in the Scleroderma Foundation) is what I need to be doing."

One of her close friends, Shauna Forsythe, said that Nolen's bravery is inspiring.

"She's my hero,"said Forsythe, who has known Nolen since 1991. "She's my inspiration."

The two met when Nolen was hired as an assistant to Forsythe, who was working on the opening of Main Street Station. Nolen was married to former Las Vegas City Councilman Bob Nolen at the time.

Forsythe said at first she thought, " Great. I have a hotel to open and I've got some councilman's wife who's going to be like, 'Oh. I'd love to help, but I have a nail appointment.' " After a day, her preconceptions were dispelled.

"I realized what a gem I had," she said. "She is so smart. I felt lucky to have someone that good."

And while Nolen is in much better shape than she was five years ago, there are times when she has her "pajama days" when she spends the day resting and lazing around the house. Those days are few, however.

When her disease was diagnosed, she "could very easily have taken to my bed and said, 'Okay, I'm going to die," she said. "And I probably would have. You have to be as positive as possible and have as much control over this disease as you can as opposed to letting it control you."