Governor declares Pain Awareness Month

Posted October 27, 2018 at 5:00 am

j Gov Reynolds Kimberly Waterbury.tif

By Julie Ann Madden

It was a simple motorcycle accident that changed her life forever.

In 2010 at a stop light, her motorcycle’s throttle popped, causing her to be thrown from it. She landed on her knees, scraping them. However, her right knee continued to hurt.

So a couple of weeks later, Kimberly Waterbury, of Le Mars, went to her doctor who sent her to a surgeon for a torn Anterior Cruciate Ligament (ACL) in her knee.

The doctor noted the ligament showed some healing but Waterbury actually felt it had worsened.

“Just a simple thing — one little piece of tissue,” said the Akron-Westfield Class of 1982 alum.

But, Waterbury had begun noticing odd things with her leg and began taking photos, recording videos and blogging about her symptoms — especially when her left knee started to mirror the right knee’s symptoms.

Her knee caps would disappear; her leg would turn bright red and feel like it was on fire internally but yet it was cold when she touched it. Sometimes her leg would turn black in color or her toes and feet would swell to humongous proportions. Sometimes she gets huge welts on her legs.

The surgeon told her she didn’t need surgery. In fact, he had the oddest look on his face as he wrote four words down: Complex Regional Pain Syndrome (CRPS), said Waterbury.

“You’re a smart girl,” he told Waterbury. “Most don’t get diagnosed.”

As he referred her to a pain clinic, he looked heartbroken. It’s her memory of the moments her life changed.

“It’s a horror story because there is no cure,” said Waterbury who was 46 years old at the time of the motorcycle accident. “My brain tells me everything hurts. I’m in pain 24/7, I struggle through it every day.”

“My brain tells my body it’s sick and hurt,” she explained to The Akron Hometowner. “There is no way to get the brain to shut off — once it’s on, you can’t shut it off.”

“People die from CRPS because the brain tells the body it’s sick,” said Waterbury, explaining the brain tells your body to make lots of hair, then to lose it. It makes bones deteriorate — people’s teeth go bad. The brain just shuts down your body’s functions.”

“Walking across carpet it feels like I’m stepping on shards of glass,” said Waterbury. “Your brain says clothes, the wind and being touched makes your body hurt.”

“It’s a strange, strange disease,” said Waterbury who is one of only a handful of people in Iowa who have CRPS.

“When I got it in 2010, people were put in institutions because people thought they were looney,” said Waterbury, noting CRPS is nicknamed the “suicide” disease because victims reach such a point of despair and CRPS is known as one of the most painful diseases.

According to the National Institute of Neurological Disorders and Strokes, the key symptom is severe pain that may be constant and it is unclear why some individuals develop CRPS while others with similar trauma do not. Although it is more common in women, CRPS can occur in anyone at any age, with a peak at age 40. CRPS is rare in the elderly. Very few children under age 10 and almost no children under age 5 are affected.

“I don’t want people to feel bad for me even if it’s a bad deal,” said Waterbury, who has been through pain clinics and two spinal cord implants to try to block signals to the brain. The latter failed.

Waterbury, who just turned 54, has stopped taking pain medications and relies on coping skills such as listening to music, painting and spending time in nature.

“I find keeping my brain busy, then I don’t focus on the pain,” said Waterbury. “I try to stay busy and smile every day for my girls (daughters).”

“I’m not ready to give into this monster,” said Waterbury, laughingly adding she has the Waterbury family stubbornness.

Waterbury now volunteers for the U.S. Pain Foundation and decided to begin sharing her story.

“People don’t know what to do with you,” said Waterbury. “You lose everybody — family and friends. There is nothing they or we we can do about CRPS.”

“When you’re one of a handful in Iowa, the support is not here,” said Waterbury. “Even if I’m the Lone Ranger here, people still need to know about CRPS. “

“I pray to God that there’s no one out there that has this disease,” she said, “but if there is, I’d love to contact them and help them if I can.”

On Sept. 28, Waterbury asked Iowa Governor Kim Reynolds to sign a proclamation designating September as Pain Awareness Month. Nov. 7 is CRPS Awareness Day.

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