Life Goes On: A Mom’s Chronic Pain and a Debilitating Illness Impacts The Entire Family

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Carla Valentino knows all too well the toll pain can take on a mom and her loved ones.

By Mary Beth Sammons

The 45-year-old mom of two from Land O’ Lakes, Fla. was an active small business owner and wife when she slipped and broke her ankle. The fall triggered a progressive chronic nerve disorder that has robbed most of her mobility and left her dependent on others. That was five years ago.
Today, she has had to surrender her mom duties: carpooling her children, Brett, 13, and Natalie, 8, to school and their activities, along with running her business. On the worst days, her illness keeps her bedridden, and on the best, writhing in pain, but able to maneuver with crutches, a cane or a wheelchair.

The worst reality was when my kids asked why I couldn’t play with them as actively as I used to, she said.

Her husband, David, who was then her fiance, immediately jumped into the role of round-the-clock caregiver, cooking, taking care of the children and driving her to doctor and PT appointments. Her 81-year-old mom also comes to Florida periodically to help with the kids when Carla has had a surgical or outpatient treatment, and one of her best friends helps carpool her kids to and from school and their after-school activities.

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When Can We Run, Dance, and Play Again?
by Carla Valentino

The hardest part is trying to balance being a mom, wife and mother when I have to depend on others to do much of this for me, she says. Daily I wake up and don’t know the level of pain and or spasms that I will have to deal with. There are mornings when my pain is what I call my doable pain. I can put some pressure on my foot but cannot walk for a long period of time. And then there are the really bad days when it takes over.

In an effort to explain her condition to her own daughter, Valentino embarked on a journey to write a book specifically for children, on how to understand and cope with illness. When Can We Run, Dance, and Play Again, (AuthorHouse, 2011), is a colorful, touching and informative children’s story for kids of parents who are suffering from chronic pain and illness.

In Part 1 of our interview with Carla Valentino, she shares a glimpse of her daily struggle with a debilitating illness and her determination to remain an active mom to her children.

Q. Tell us about your condition.

Reflex Sympathetic Dystrophy Syndrome, also known as RSDS, is a progressive illness of the autonomic nervous system that can follow a simple trauma, a fall, break or fracture, and more serious condition like heart problems, infections, surgery or a spinal injury. It’s a multi-symptom condition affecting one, two or sometimes all four of the extremities. RSDS involves the nerves, skin, muscles and blood vessels (causing constriction and pain) as well as the bones. It can spread from one part of the body to another regardless of where the original injury occurred and can inflict the entire body with pain and uncontrollable spasms that occur anytime, anywhere.

It started in February of 2008, when I took my kids to a bounce house birthday party. Being the active mom that I am, I found myself in the bounce house participating. Turns out this was not the best choice. I severely sprained my ankle and was sent to the emergency room. Several months later, I was diagnosed with RSDS and was told this was an incurable progressive illness which also includes spasms that can occur anytime and can last for hours. Five years later, my RSDS has spread to my knee and hip.

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Do you or anyone else you know suffer from RSDS and what tips do you have for treatment and living with this debilitating condition? If so, please join our community today to share your story with us.

To find out how her chronic disability has impacted her family, return to the Pain Resource blog tomorrow to read Part Two of Life Goes On: A Mom’s Chronic Pain and a Debilitating Illness Impacts The Entire Family

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