The Oregonian Staff
Kara Loree broke down on a Friday, 11 days into pain boot camp.
The tub step-ins did it.
They’re tough. With an occupational therapist timing her, Kara had to step in and out of a bathtub as often as she could in one minute. And she had to beat her own record: 37.
That morning, on the 11th step-in, the 15-year-old Oregon City girl tripped and crumpled.
“I can’t,” Kara said, gasping.
Take a moment, therapist Cyndy Coughlin told her. Breathe.
In late October, Legacy Emanuel Children’s Hospital admitted Kara to a new program designed to cure young patients with certain debilitating, chronic pain — or at least teach them to cope. Doctors bill the program, one of a handful of such nationwide, as medicine with a tough-love twist: To help her, Kara’s medical team would make her hurt more than she had since constant, excruciating foot pain started in September.
Rule No. 1: Unless her doctor asked, she wasn’t allowed to whimper a word about her pain.
Kara leaned her head against the shower wall. Tears streamed down her cheeks, and her shoulders heaved as she sobbed.
“Everybody has a time,” Coughlin said gently, “when they need to stop and take a break and start over again.”
“No,” Kara said, her voice rising defiantly from its usual soft pitch.
“I am not doing it.
“I am not doing it.
“I am not doing it! And I really don’t like you!”
Kara’s pain seemed to come out of nowhere.
She hadn’t injured her right foot. It wasn’t infected. She hadn’t even slept on it funny.
Yet, from the Saturday the pain started, Kara said, her foot felt as if an elephant were crushing it. When anything touched it, drops of water in the shower or the soft swipe of a towel, her foot felt as if it were being pounded with a spiked hammer.
Kara’s mother took her straight to her doctor.
Lisa Loree is a registered nurse. She and the doctor thought Kara’s pain might be linked to granuloma annulare, a common skin condition that periodically caused bumpy breakouts on the girl’s feet. The doctor biopsied the bumps, prescribed the painkiller Vicodin and sent Kara home, advising she use crutches.
An artistic sort who sings and writes poetry, Kara decorated her drab new crutches with glow-in-the-dark puff paint and hobbled on her custom sticks to Gladstone High School, where she’s a sophomore.
Two days later, Kara phoned her mother from school, weeping. Pain screamed through her foot. She asked her mom to come get her.
In a hospital emergency room that day, doctors tried to calm Kara’s pain with morphine and Dilaudid, a narcotic analgesic. Neither helped.
Lisa Loree remembers her daughter pleading, “Mom, can’t they just make me unconscious?”
Pain is complicated, but in essence: Receptors on the skin trigger electrical impulses that travel to the spinal cord. There, pain signals can be blocked, enhanced or changed before they move to the brain, where chemicals called neurotransmitters combine to produce pain.
It can feel as quick as a pinprick, as achy as arthritis or as sharp and burning as the condition a rheumatologist diagnosed in Kara: complex regional pain syndrome, type I, or CRPS.
Doctors figure an abnormal reflex in Kara’s spinal cord might have caused blood vessels to constrict, causing pain. When Kara’s foot hurt, she stopped using it. The result was poor circulation, which caused more pain.
Research suggests that hormones, stress and emotions play a role in CRPS. The human nervous system continues to develop into the early 20s; hormonal, cognitive and psychological changes during puberty might affect adolescents’ vulnerability to pain.
Adults can get CRPS, too. Much about the ailment remains unknown — including how many people have it — but doctors say one thing is certain: The pain is real, not imagined.
Kara’s pain was stuck in a bad loop. It wouldn’t turn off.
Kara checked into the hospital Oct. 29. Her father, Derek Loree, followed doctors’ orders: He took away her crutches.
Kara knew she’d miss weeks of school, choir rehearsals, her friends, parents and 17-year-old brother, Colin. She’d have to skip several “Horde Nights,” as Fridays are called in the Loree home, where up to a dozen of Kara’s and Colin’s pals gather for pizza, games and sleepovers.
But the foot pain had spread to her right knee.
Doing dishes and vacuuming fell unmissed off her chore list. But the pain, she said, kept her from the things she loves. Like many youths who develop CRPS, Kara is driven — good at everything and a year ahead in math. She dropped that class because the pain exhausted her. At choir practice, she had to sit instead of stand. She couldn’t bowl with her church group or shop with friends.
Rail thin at 5 feet 4 and 106 pounds, she’d lost weight, saying it was too hard to get to the kitchen to fix food.
Some days, her mother recalled, Kara would cry for hours, saying, “Mama, make it stop. Mama, make it better.” All Lisa Loree could do was hold her hand and say, “Hang in there.”
So when the rheumatologist referred her to Emanuel’s hard-core pediatric pain program — a physically intense approach based on the work of Dr. David Sherry, a Philadelphia physician who has helped more than 1,000 children with similar problems — Kara agreed. She wanted her life back.
That first morning in the hospital, though, she was petrified.
“All I know,” Kara said, tears welling, “is I’m gonna get hurt.”
When she tried to put a shoe on the foot that hadn’t worn one in a month, Kara panicked. Hyperventilating and crying the second morning in the hospital, she dialed her mother.
Don’t call me, call your nurse, her mother advised. After all, the key to the program is teaching patients to solve their own problems.
At 9 a.m., when Michelle Swift, a physical therapist, arrived at room N3509 to collect Kara, a brown paper bag sat on the teen’s bedside table. Kara’s nurse had told her to breathe into the bag to quell her panic.
Her tone kind but firm, Swift insisted that Kara put on her shoes.
Kara fingered a medallion on a chain around her neck, a gift from her mother. Imprinted in it was one word:
She pursed her lips, slipped into her ratty old Asics and stood. Limping slowly, Kara followed Swift out of the pediatric unit and into a stairwell leading to the therapy gyms.
If Rule No. 1 was no pain talk, then Rule No. 2 was no elevator. And more: Do everything the doctors, physical, occupational and psychological therapists ask. Take responsibility for improving. If an exercise is timed, always beat the previous time. If it’s repetition, always beat the count. If it hurts, tough it out. Don’t follow the rules, and you’re out.
“What’s the difference,” Swift asked Kara, “between a physical therapist and a terrorist?
“You can negotiate with a terrorist.”
A smile slipped across Kara’s face. Swift’s, too.
Walk like a duck, Swift instructed.
Kara crouched, waddled down a hall, turned and waddled back.
She squeezed her eyes shut and covered her face with her hands. The duck walk had worked Kara’s knees and toes, her most painful parts.
Swift handed her a box of tissues and gave Kara a minute to compose herself.
Scuttle like a crab. Move like an inchworm. Hop like a frog.
If one day feels like the next for any hospital patient, it felt doubly so for Kara. Day after day, therapists asked her to repeat exercises so they could chart her progress.
She rode a bicycle, walked a treadmill and hopped on a trampoline. She maneuvered through obstacle courses, balanced on tippy boards, and when she limped quickly down a long hall, Swift told her that — believe it or not — she’d run that course soon.
“Ready? Go!” Swift said, and Kara did pushups, her hands on a mat and her knees on a chair. After 16, she stopped.
“I can’t,” Kara said, huffing.
“You can,” Swift said. “Do you need to sit for a minute?”
“Can we do this tomorrow?” Kara asked.
“No,” Swift said.
The push-pull between therapists and patient would become routine as Kara’s motivation and emotions boiled and chilled. Her body and brain would find new ways to respond to pain signals, but the treatment came with its own stresses. Being away from home, school and friends so long wore on Kara.
During five- and six-hour days therapists distracted Kara with word games or personal questions — anything to make her think about something besides pain. Repeatedly, they reminded her of her goal: to be able to do everything a healthy teen could. Achieving that was up to her.
Her creamy complexion flushed with exertion, Kara got back into position. Swift resumed counting pushups. “That’s 20 . . . 25. There’s 30. Last 10, girl, you can do it.”
Swift punched a stopwatch.
“Nice job,” she said.
Kara sank to the floor, crying.
“It’s not all gonna be torture,” Swift said. “I promise.”
Auburn hair flying, Kara sprinted down a hall one week after she’d hopped into Emanuel on crutches.
A smile stretched from one side of her face to the other — and that wasn’t the only thing looking good. When she removed her shoes and socks, Kara’s right foot looked as pink as a piglet, not the bone-white shade of the week before. For the first time in weeks, blood circulated properly to her toes.
That afternoon, Swift put Kara through her paces: jump rope; crunches; lunges; jumping jacks. Kara completed them without complaint, and a surprise followed.
That first Monday in November, the sky shone a sapphire blue. Drifts of maple leaves turned the sidewalk on North Graham Street into a celebrity-worthy red carpet.
The two pushed open a hospital door and stepped outside.
“Sunshine!” Kara cried. She kicked her feet through the leaves and sucked in fresh air.
Her goal, Swift told Kara, was to walk with a steady, even gait — like a normal teen — down the steep hill.
Two blocks below, Swift suggested they race back.
Arms and legs pumping, Kara reached out and touched a pole at the top of the hill.
“I won,” she said.
Desensitization was the worst, and several times each day Kara required the tactile therapy designed to retrain her pain response.
Therapists massaged Kara’s foot. Or they asked her to submerge it in hot water, then ice water. Often, she ran a plastic brush across her toes and arches. To anyone else, it might have felt less like torture and more like a pampering pedicure.
On her 10th morning, desensitization meant walking barefoot in the dewy grass, and it pushed her over the edge. More than an hour later, Katie Harpster found Kara in a corner of the gym, her angular frame curled into a tight ball. She’d spent the lunch break sobbing.
“Kara, c’mon,” said Harpster, an occupational therapist. “Let’s go for a walk and a talk.”
The next day, Kara’s mood bounced back.
The day after that, she threw her, “I’m-not-doing-it” tantrum over the bathtub step-ins.
Neither the highs nor lows surprised Dr. Steve Janselewitz, the pediatric physical medicine and rehabilitation specialist who directed Kara’s care team. Since he and Emanuel’s Dr. Mark Shih started the pain program early this year, they’ve watched about half a dozen children ride pain and mood swings similar to Kara’s.
“It’s kind of nice to see them break down while they’re here,” said Janselewitz, “because then we can get them through that, and they can say: ‘Hey, I can do this.’ At home, they don’t necessarily have that support.”
On her 19th and last day in the hospital, Kara and Linda Krausse, a physical therapist, charged across a sky bridge and ducked into a stairwell.
Kara had plenty on her mind. Her team of therapists, doctors, a psychologist, teacher and social worker had armed her with coping strategies and a home exercise program she’d need to follow faithfully. Her foot and knee still hurt, but she could deal with it. She could run and jump and planned to glide around the Lloyd Center’s ice rink that weekend.
In a few weeks or months, Janselewitz predicted, Kara’s pain would subside, then disappear, as it typically does for children who can endure the treatment program.
In the stairwell, Krausse told Kara that together they’d run four stories up, then four down. Four times.
“You’ve come a long way, Kara,” Krausse said.
“I have,” Kara replied.
“That must feel good.”
“You have no idea,” Kara said, “how good it feels.”
Katy Muldoon: 503-221-8526; email@example.com