For 10 years she didn’t leave her house.
Six of those years were spent without sleep
– living in an almost zombie-like state that resembled an
episode of the Twilight Zone instead of real life.
Hollister – For 10 years she didn’t leave her house.
Six of those years were spent without sleep – living in an almost zombie-like state that resembled an episode of the Twilight Zone instead of real life. Her skin was so sore she couldn’t stand to be touched. She suffered incredible pain throughout her entire body, dizzy spells, irritable bowel syndrome and chronic fatigue.
Although Hollister resident Annette Perry frequented a slew of doctors, none of them could pinpoint what was wrong with her. So she lived with an unknown, undiagnosed disease that on a daily basis threatened to destroy her sanity, her life and her dreams.
Perry suffered from a relatively obscure disease called fibromyalgia, which doctors believe is a genetic deficiency that does not allow the body to flush excess phosphates. Because of this the, phosphates build up in the body, affecting everything from the brain to the tip of the toes, Perry said.
The phosphate build-up in the brain negates the possibility of restorative sleep because it blocks that part of the brain that allows the body to fall into a deep sleep, she said.
“Everybody who has fibromyalgia that has plans for anything, they get dashed,” Perry said. “Careers are given up, dreams are given up… But I’m not a person who resigns myself. Nothing can drop a person the way it dropped me without me finding a way to get out of it.”
Perry had mild symptoms of fibromyalgia her entire life, but got married, got a master’s degree in library science and was a college professor until she came down with pneumonia 14 years ago. The pneumonia triggered the fibromyalgia symptoms, and they took over her life.
Her husband had to give up going back to school to get his Ph.D. because he had to work and take care of her, she said.
“It’s a test for the person who gets the illness and anyone close to them,” Perry said.
Three and a half years ago Perry finally found her salvation from this debilitating disease in the form of a drug protocol to combat the symptoms of fibromyalgia, developed by Dr. Paul St. Amand from the University of California Los Angeles.
By taking the drug treatment and adhering to a strict diet she has been in remission for about two and a half years because the treatment takes some time to go into full effect.
Along with the drug treatment, Perry and many other fibromyalgia patients use a special type of massage that is performed in Hollister by massage therapist Christy Garner.
Garner helps to keep Perry in remission by gently massaging away many of the phosphate build-ups with a technique called “body mapping,” she said.
“I remember when I first saw (Perry) starting to feel better,” Garner said. “It was like she was coming alive.”
After going through years of physical and emotional pain because of her disease, Perry started up a support group in San Benito County for people suffering from fibromyalgia two years ago.
Hollister resident Terri Andrade and Morgan Hill resident Susie Smith are both fibromyalgia patients who attend Perry’s support group and contribute their remission of the disease to St. Amand’s treatment program.
Both Andrade and Smith’s experiences were similar to Perry’s in that they had shown mild signs of the disease their entire lives, but it wasn’t until each had a significant medical experience that triggered the full-blown symptoms.
Smith had sinus surgery that brought the disease to the forefront and Andrade had too much sun exposure, provoking the symptoms.
The disease was recognized by the Center for Disease Control in 1988 and mainly affects women, Perry said.
Currently there are approximately 200 people in the Hollister/Gilroy area affected by the disease, and the number of people who frequent Perry’s support group fluctuates each month, she said.
Since the women have been in remission a common theme resonates between them: hope.
“The doctors would say, this is all we can do,” Smith said. “This is my life, the rest of my life, and I hate it.”
Now each woman is able to do all the things most people take for granted, such as driving a car, reading a book, hugging their children and sleeping through the night.
“It makes you realize what’s important,” Andrade said.
“How does it feel to have your life back?” Smith said. “It feels great. It was so lonely.”
For more information contact Annette Perry at (831) 636-5302.
