September 2012: “When Can We Dance Again?”

Mother suffering from RSD writes book offering tools for families facing long-term illness

How do you explain a chronic illness to children?

Carla Valentino, mother of two, knew that her life would change when she was diagnosed with RSD/CRPS, the worst form of chronic pain that exists today. What she didn’t know was how to explain it to her kids.

Valentino has learned how to manage her illness in combination with her role a parent, and she has also managed to strike the right note in explaining chronic pain to children. She lays out her experiences in a new children’s book, When Can We Run, Dance and Play Again?, a useful tool for any family facing a long-term illness.

The moment of awareness
Once an active mother of two small children and a small-business owner, Valentino sprained her right ankle, triggering a dystrophy called RSD or CRPS, Reflex Sympathetic Dystrophy, a progressive disease of the autonomic nervous system. The disease affects nerves, skin, blood vessels (causing constricting pain) as well as bones. RSD is ranked the most painful form of chronic pain that exists today, according to the McGill Pain Index.

Valentino was putting her daughter, Natalie, to bed one night, when the four-year-old asked, “When can we run, dance and play again?” Natalie’s question struck Valentino to the core. It was then that she realized how her illness was affecting both Natalie and her brother Brett. That’s when she decided to write about her experiences, with the hope of helping other parents in similar situations.

“This book is not only for my kids, but for others who may have a hard time answering questions when a health issue affects someone in your household,” Valentino says. “This change in my life, which at times leaves me disabled, has forced me to take action, to help be a voice for RSD.”

What is RSD?
Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is a chronic neurological syndrome characterized by:

    • severe burning pain
    • pathological changes in bone and skin
    • excessive sweating
    • tissue swelling
    • extreme sensitivity to touch

According to the Regional Pain Syndrome Association ( RSDA), more than 140 years ago, Dr. Silas Weir Mitchell, a Union Army surgeon, first described the excruciating pain that we know as CRPS.

Valentino says that despite her “healthy” appearance, she suffers “daily, unbearable, unrelenting, pain.” She adds that the pain associated with CRPS has been rated worse than that of people who suffer from cancer. Here are some of the symptoms Valentino experiences on a daily basis, in her own words:

  • My skin may swell, sweat, change colors, change temperature, or hurt to the slightest touch.
  • CRPS can spread.
  • Often it is difficult for me to sleep, so I may have trouble with attention and concentration.
  • I am frequently following a prescribed medication regimen that usually involves powerful drugs with many side effects that may affect my alertness or attentiveness.
  • It is often hard to move easily or keep my body steady.
  • Chronic pain, like that caused by CRPS, often leads to depression because we undergo significant, and often negative, life changes.
  • I have moderate to bad days; even hours. Stress increases my pain.

Coping Tools
As a devoted mother, Valentino has been driven to seek and implement as many coping tools as possible to lessen the impact of her disease on herself and her family.  She says her tools help her on a daily basis. “Depending on what is happening and where I am, I will tweak them to fit my surroundings,” Valentino adds.

Here is a list of some of the coping tools and methods Valentino has found to be most useful:

1. Visualization– My hypnosis sessions with Debbie Lane at Wisdom Hypnosis taught me how to transcend into a deep sleep, where I can tap into my subconscious and actually put a name and an image to it. “Ted the Bull” is the name to my subconscious. Ted is a Bull that guides me to find a way to get relief.

2. Breathing– Slow deep breaths help me to keep calm.

3. Music– Music makes me feel good! Feeling good can help ease the pain.

4. Comedy– Thank God for comedians and comedic movies! Ellen, Wanda Sykes and Will Ferrel, are just a few of my favorites!

5. Animals– My animals help me tremendously! Their unconditional love and affection gets me through rough times.

6. Praying– Helps me to focus and to draw strength from within.

7. Family and Friends– My family and friends give me so much support, especially, my husband David, my kids and my mom. Knowing and feeling their love gives me a feeling of security.

8. Plants– I have a Zen area in our backyard, complete with many plants and a fountain. It’s a great place to meditate, relax and let all of my emotions go.

9. Eating Healthy– Eating healthy obviously is very important! It is crucial, especially when suffering from a disease.

10. Journal– Writing down my thoughts helps me to release my feelings. At times, going back and reading what I wrote helps me to reflect back which can show me how strong one can be while battling a challenge.

When can we run, dance and play again? is a great book for kids and for parents that may need a tool to start conversation on a health topic.

Although there is no known cure for CRPS, Valentino says she maintains hope, thanks to ongoing research and the support of her family and friends.