Q&A: Bianca Podesta, Ph.D., author
Online "Scleroderma Voice" Exclusive
Bianca Podesta, Ph.D., author of “Scleroderma Coping Strategies,” has lived with scleroderma for more than 30 years. She facilitates the Scleroderma Foundation’s support group in Binghamton, N.Y.
She wrote her book to motivate other scleroderma patients to listen to their bodies, to journal about their own health concerns and to move toward enjoying a better quality of life.
“Scleroderma Voice” editor Christina Relacion had the chance to speak to Bianca about her book.
CR: What inspired you to write a book about your experience living with scleroderma?
BP: I thought of the people whom I‘ve met who live with scleroderma, and suffer on a daily basis. I thought, also, how mysterious this disease is – how complicated. Maybe by writing a book, I would come to understand it better. My rheumatologist was the first to encourage the project. When I began journaling, I was having a hard year medically. My background as a counselor and ordained minister led me to deal with emotional and spiritual issues as well as the medical.
CR: How did keeping a journal help you understand your disease better?
BP: I wrote notes every day
about what helped and what didn’t. I realized how incredibly
individualistic scleroderma is – how it manifests differently in every
person. I began to see how important my daily choices were.
BP: Well, I keep a record of what I eat and drink, and what I think about the important things in my life. You might note the things that stand out in each day’s experience. You might reflect about the home you grew up in. For instance, did your parents smoke? Were there chemicals in the air from industry, or pesticide used near where you lived? Were you sick often? Do you have relatives with lupus or other overlapping diseases? You also might want to consider the level of negative stress during your life – work or living conditions that might have contributed to your disease.
In journaling, as in life, we also always need to have room for the positive, for the good, such as the times we have been touched by the kindness of others or the times we see the beauty in nature, music and art.
By having my journal to look back on, I am able to see mistakes I’ve made, and begin to correct them. Keeping such a record can help us to take a new turn in our healing, and in our life.
CR: Aside from the journal entries, what else can readers of your book expect?
BP: There is a single focus for each of the 17 chapters with pages of introduction. The chapters discuss the following subjects: skin, fatigue, love/work, tests and procedures, stress and spirit. I discuss these with regard to their specific impact on people with scleroderma. At the end of each chapter, I offer self-care options.
CR: In the book, you say that self-care disciplines are key to your well-being. Can you describe some of those?
BP: For instance, as soon as I get up in the morning, I do yoga stretches to relax my whole body. This improves posture and digestion and provides quiet time before the day’s activity begins. When I get up off the [yoga] mat, my back, my muscles, everything feels better. I rub castor oil on my skin regularly to soften and nourish it. I also have disciplines in the areas of diet and exercises, which I’m constantly trying to improve on.
CR: Describe researching and writing the book. Was it an eye-opening experience for you?
BP: An eye-opening experience? Absolutely! I read everything I could, and tried to learn about scleroderma from everyone I could and the many ways it may affect us. I intended this book not only to inform my readers about this disease and give them a model for journaling, but also to reassure them that they are not alone.
Would you like to purchase “Scleroderma Coping Strategies?” Email Bianca Podesta at firstname.lastname@example.org. The sale price, when purchased directly from the author, is $12 [$9 plus $3 shipping/handling]. You can pay by check or use PayPal.
Learn more about the book online at www.sclerodermacoping.com.
- Patients & Newly Diagnosed
- Healthcare Professionals