Land O’ Lakes woman’s book for chronic pain sufferers
By B.C. Manion
Carla Valentino has always enjoyed being active with her children.
During one such spurt of energy at age 39 during a birthday party, the Land O’ Lakes woman sprained her ankle while playing with her daughter, Natalie, in a bounce house.
“It was so bad I had to go to the emergency room,” Valentino said. She added, “They did the typical thing. They casted me up and told me I had to see my doctor.
“My foot was not healing,” Valentino continued. “I had elephantitis like you would not believe. Lots of redness; acute pain.”
During a follow-up, a nurse told Valentino and her husband, David, she had reflex sympathetic dystrophy (RSD).
That was five years ago.
Now, the chronic pain in her ankle have spread to her knee and hip.
The condition, which is also known as complex regional pain syndrome, is characterized by severe and relentless pain with no cure, according to www.rsds.org. The website estimates between 200,000 and 1.2 million Americans are affected by it.
As Valentino has learned about RSD, she is aware of the challenges it presents.
“It cannot only affect one extremity, but it can bounce to all four extremities without any other injury,” Valentino said.
“With it comes spasms,” she continued. “They are uncontrollable. They happen at any time, anywhere. … I’ve been at my kids’ functions at auditoriums. I’ve had to be carried out.”
The same thing has happened on vacations and at dinners, she added.
“It’s kind of hard to plan your life,” Valentino said.
The condition caused Valentino to be less active.
“One night, I was putting my daughter to bed, she looked up at me — she was 3 at the time— and she said, ‘Mommy, when can we run, dance and play again?’
“It just stopped me in my tracks.”
Later that night, Valentino had trouble falling to sleep, but when she did, a story came to her mind. She got up to write it down.
“I didn’t even know I was going to do a children’s book,” Valentino said. “It was just the urgency to get the story down. … When she asked me that question, I realized she is curious. She wants to know what’s happening with her mommy.”
As time went on, Valentino felt an increasing urge to publish the story. She felt her book, When Can We Run, Dance and Play Again?, was meant to be when she found illustrator Donnalee Houston.
Self-published through AuthorHouse, the book is dedicated to Valentino’s children, Brett and Natalie. Valentino said she invested about $7,000 in the project.
The book offers a glimpse into the life of a mom whose health doesn’t allow her to play with her children the way she once did.
The book doesn’t dwell on RSD. Rather, it relates to how a mom can use imaginary games and other ways to play with her children.
“A lot of times I’m in bed; I have a lot of guilt,” Valentino said. “I’m a mom. I can’t do what I used to do.”
The book is not a how-to guide, but promotes the idea of using one’s imagination.
Valentino has learned to be resourceful in real life.
“We create things in bed,” she said. “We paint things on canvas. We make jewelry. We’ll do all of these fun things from bed because Mommy can’t go out.”
The book is intended for anyone who is suffering from an illness or disease, to be used as a springboard for discussion, she said.
“I’m a talker, so it’s easy for me,” Valentino said. “But some people have more trouble, especially when they’re in pain. I know it can be very hard to open up, especially when you have young ones. You don’t want to scare them.”
After learning she had RSD, Valentino said she met others who have the same condition at RSD groups. She also found out there were other families, whose children also attend Academy at the Lakes, who have a family member with the same condition.
Valentino said she also hopes her book will raise awareness about RSD, which remains in many ways a medical mystery.
Valentino said she’s tried a variety of treatments, such as an oxygen chamber, acupuncture, surgeries, cranial therapy, spinal stimulators, lower lumbar shots, injections of fish poison, deep breathing, visualization and hypnosis.
She hopes it goes into remission.
She also keeps a journal to record what is happening to her.
“Emotionally, it can be very, very difficult,” Valentino said.
But she said her family has been amazing and her friends have been wonderful.
She’s also determined to push on with the help of her cane, crutches and wheelchair.
“I am not going to let RSD rule me and take over me,” Valentino said.
And, despite the pain and limitations, Valentino said dealing with her condition has had positive effects.
“It has made me a more aware person, and, I believe, a better person, too,” Valentino said. She added, “I really want to say to people who might be suffering from a chronic illness, ‘Never give up. Don’t let it eat you up and destroy you.’
“This is probably my purpose,” Valentino continued. “Things happen for a reason, and even though they’re bad, you have to take something bad and make it good.”
To buy the book
When Can We Run, Dance and Play Again? is available through Amazon.com, barnesandnoble.com and authorhouse.com. For books purchased through the author’s website, whencanweplayagain.com, Valentino will donate 20 percent of the proceeds to the RSD Hope for Tomorrow Research Fund.
Facts about RSD*
—It is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain.
—It is frequently caused by minor injuries, such as a sprain.
—Symptoms include swelling, abnormal skin color changes, skin temperature, sweating and limited range of motion.
—Women are two to three times more likely to have the condition than men.
—The mean age at diagnosis is 42, but children as young as 3 have been diagnosed with it.
—The condition is not a psychological syndrome, but it may become one if no one believes the complaints of pain of someone who has the condition.
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