Published on Sunday, March 26, 2006
Cowiche woman with painful disease hopes to spare others pain
Carol Rains clutched her husband's hand tightly as she waited nervously for her turn.
She looked anxious, and maybe a little tired as she smoothed a wrinkle in her jeans.
But not sick.
John Rains was the only person in the room who knew that the right hand he was squeezing is the only part of Carol's body that isn't tortured by a deep, burning pain at the slightest touch or breeze.
Most of the people in the audience turned their attention elsewhere as the Yakima City Council moved to the proclamation section of its March 7 agenda.
But Carol leaned forward in her chair, ready for her long-awaited chance to have a roomful of people acknowledge her eight-year war with chronic pain and the people who don't believe it exists.
John looked at her and smiled, grabbing for his camera as Mayor Dave Edler asked Carol to stand at the lectern while Councilman Ron Bonlender read a proclamation Carol co-authored about a scarcely known disease called reflex sympathetic dystrophy.
"Whereas RSD is a progressive neurological disease that has constant, severe burning pain as its main system," he read ...
"Whereas many health-care professionals mistakenly believe RSD is a psychological condition rather than a physical one ...
"Whereas early recognition and proper management of RSD may lead to the prevention and/or the reduction of the severity of this potentially catastrophic condition ..."
And as if it were the easiest thing in the world to do, it was officially Reflex Sympathetic Dystrophy Awareness Month in the city of Yakima.
To almost everyone, it means nothing.
But to Carol and the few people who have believed her since she was diagnosed with the controversial disease seven years ago, it means everything.
One Friday in July 1998, Carol was moving bundles of wood at Can Am Millwork (now Alexandria Millwork) in Moxee, when she felt a tear in her right knee.
After a doctor's appointment the following week, Carol began physical therapy. In November, she had surgery to repair her torn medial meniscus.
But even after the surgery, the constant ache and occasional tight pain in her leg continued to worsen, forcing her to quit her job within a month.
"I started wondering, 'What is this?' " she says.
Doctors in Yakima and Seattle told her it was impossible for her to be feeling pain. They told her it was all in her head and she should continue physical therapy, she says.
But the situation grew more strange. Driving her two teenage sons to school, she began to notice that when the keychain dangling from the ignition of her Ford Bronco would brush her thigh, it would set off intense pain. More and more, the skin on most of her right leg became sensitive to touch and temperature.
One year after her injury, she demanded that her doctor take a closer look.
An MRI at Orthopedics International in Seattle in November 1999 showed that her knee was completely normal. The tear had healed cleanly.
The same day, after examining Carol's leg and hearing about her symptoms, Dr. Edward Khalfayan diagnosed reflex sympathetic dystrophy, or complex regional pain syndrome, in her right knee.
Frustrated because she'd never heard of the disease, Carol asked her local doctor's nurse to collect some information for her about RSD.
A few days later, the thick manila envelope full of Internet printouts arrived.
She read only a few pages before her frustration turned to fear.
RSD, she learned, is triggered when the nervous system malfunctions following trauma to the body. Doctors aren't sure why, but when the injury heals, the local nerves don't stop sending pain signals to the brain. In many cases, especially without early treatment, the condition can spread, causing chronic burning pain all over the body.
The Reflex Sympathetic Dystrophy Syndrome Association estimates that between 200,000 and 1.2 million people in the United States have the disease. The numbers are difficult to track because most patients and many health-care providers are not familiar with the disease and symptoms vary from patient to patient.
The disease affects women three times more often than men. The average age of diagnosis is 42, but it has been found in children as young as 3.
Carol was 36 — and terrified by what she read.
"I started looking over it and I started crying," she says. "And I cried and I cried and I cried."
She was still in tears as she shared the information with John when he got home from work that night.
"I think we both knew from that moment on, our lives would never be the same," he says.
For as long as she can remember, Carol had gone camping or hiking nearly every weekend.
She grew up in the Yakima Valley and knows the trails in the surrounding hills as well as she knows her backyard.
But her days of walking several miles at a time or sledding with her children were over. With the eight medications she was on and the degenerative nature of RSD, the activities she had loved became nearly impossible.
Just before her injury, Carol, John and their sons had moved seven miles from the summit of White Pass to manage Camp Zarahemla, a resort owned by the Mormon church.
In the winter months, when she was in too much pain to drive, she watched her sons walk the 21/2-mile driveway to the bus stop in more than a foot of snow.
"You go through a lot of depression," she says. "A lot of life's not worth anything anymore."
After a few years, the family moved to Cowiche and had to give up two of their dogs because Carol could no longer take care of them while her sons were in school and John was at work.
She was terrified as the pain slowly spread from her right leg, to her left, and then to her left arm.
She could no longer play with her grandchildren without someone telling them to be careful not to hurt her, as if she were the child.
"I knew it was going to be harder on her, not being able to be active around her grandkids," recalls Carol's daughter, Sharon Horn. "There were plenty of days when she could do nothing but sit on the couch and cry because she hurt and there wasn't anything any of us could do to help her."
Among pain doctors and patients, RSD is known as the suicide disease because, for many, that's the only logical escape from the pain.
But Carol still had too much to live for.
Doctors will probably never know whether it was her initial knee injury or the surgery that triggered Carol's RSD.
Either way, because she was injured at work, her insurance claims were handled by the Washington Department of Labor and Industries. And by the time of her diagnosis, she and her Yakima attorney, Darrell Smart, were already fighting for the benefits they believed she deserved.
In the meantime, Medicare and John's work insurance were picking up the tab for most of her treatment.
When Carol was diagnosed, Khalfayan told her that if she received a series of sympathetic nerve blocks — injections of medicine onto or near nerves — there was an 80 percent chance that the pain would stop and she would go into remission.
But the department never approved the blocks.
"We try really hard not to pay for things that haven't been shown effective," says Robert Nelson of Labor and Industries' communication department. "We also only really treat pain when it hinders a worker's ability to recover."
Before accepting that Carol had RSD, the department paid a panel of Independent Medical Examiners — doctors the state hires and certifies to examine patients who have filed workers compensation claims — to evaluate her condition.
Though all six of the doctors Carol had seen on her own confirmed the original diagnosis, four of the five IMEs said she did not have RSD and that she didn't appear to have any physical limitations.
Despite the numbers and the working arrangement the doctors have with the department, Nelson says they are impartial experts.
"They really don't have a dog in the fight in terms of whether they want to side with the employer or the worker," he says.
But Smart doesn't buy that. Some doctors, he suspects, side with the department just to make easy money.
"I've had experts for the department who say they simply don't believe the condition exists," he says. "At any point in time, you're only a medical examination away from being turned away."
And Carol was. After years of going back and forth between doctors hired by the department and her own treating physician — pain specialist Dr. John Baumeister in Edmonds, Wash. — in March 2003 Carol heard Labor and Industries' final decision.
The department stopped her benefits and gave her about $10,000 to compensate her for a permanent 10 percent disability in her lower right leg.
"When I finally got $10,000, I was done with it. I was just so glad to know that they would be out of my life," she says.
But Smart encouraged her to stay in the ring.
"He told me, 'Carol, you have a good case here. This isn't right, you can do more.' "
So he filed an appeal with his own money, Carol says, taking a chance because he was certain he could win the case.
And in October 2004, Carol received a copy of the Board of Industrial Insurance Appeals' decision.
"I had no idea when I read it what it was going to say," she says.
It said that L&I was wrong. Carol's injury was worth more, she had RSD and the department must reinstate her benefits.
In September, Carol met Cynthia Toussaint, the only other person she's ever met face-to-face who has RSD.
Toussaint, a Californian who has had RSD for 23 years and has fought relentlessly and successfully for recognition of chronic pain diseases in her state, spoke in Yakima for Chronic Pain Awareness Month and met John and Carol afterward.
Now in a wheelchair, Toussaint, who is running for a seat in the California Assembly, got RSD following an injury she suffered when she was a 21-year-old ballerina.
It took more than a decade for someone to diagnose her correctly, and for years people who didn't understand the disease told her she was making up her pain.
"We can't imagine cancer, either, but we've been taught about cancer, so we believe it," Toussaint says.
When she met Carol and heard her story, she was impressed by her eagerness and encouraged her to promote RSD awareness locally.
"I always get very sad when I meet someone who's a nice person going about her lovely life and this disease came along and took so much," Toussaint says.
Sometimes it really gets to Carol, too. She and John celebrated their 20th wedding anniversary last week.
"I'm thinking about what our dreams were 20 years ago," she says. "We talked about when our kids were grown, buying a motorcycle and cruising around. We can't do that."
Instead, they talk about how they might have to get Carol a motorized scooter because there might come a day when she won't be able to walk anymore.
"Hopefully," she says playfully, "by then they have purple scooters with four-wheel-drive."
Smart is still working toward getting Carol a permanent disability pension from the state. L&I pays for her medications and her doctors visits to Seattle. They still haven't taken responsibility for the spinal cord stimulators she had implanted in 2003 and 2004 to make her pain more bearable.
Last year, when she had a routine root canal, the RSD spread to her face. Now it covers her whole body except the right arm.
"A lot of people talk about how it's nice to feel a cool breeze," she says. "I used to love that, too. Now it's the last thing I want to feel."
For all Carol has lost, there is one certain gain:
Because when you're sick in a way that no one can see, it is easy to be brushed aside. And over the years, Carol has learned that she cannot be silent because too many people in her condition are.
So although she had been shaking with her fear of public speaking as she waited in the Yakima City Council chamber, her voice was rock steady as she graciously accepted her signed proclamation.
"RSD is curable if caught and treated early," she told the council calmly. "If left unchecked, those afflicted will endure a lifetime of burning pain, disability, depression, and the list goes on."
Those are the things that Carol will feel her whole life.
But if she and John have their way and this tiny local effort grows into a statewide awareness campaign, maybe others won't.
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