Creating My Destiny
Hi! I'm Liz Piacentini and on June 15, I plan to ride my Canadian Horse, Destiny, in the RSDSA Virtual CRPS Awareness Walk to support research and education for Complex Regional Pain Syndrome (CRPS). If you’ve never heard of CRPS, formerly called Reflex Sympathetic Dystrophy (RSD), you’re not alone! The first time I ever heard of it was when I received my diagnosis in January 2024, five months after a knee injury led me into continuous agony and immobility.
CRPS is a rare, chronic nerve pain condition that is not well known or understood - even within the medical community. CRPS can spread from an initial injury or surgery site to other parts of the body, including organs. Receiving an early diagnosis is important for patients, and I am very grateful that I experienced that! Sadly, many fellow CRPS Warriors are passed from doctor to doctor for years before being diagnosed. Additional research and education are absolutely needed for this painful, debilitating condition.
Discovering that each patient’s CRPS experience and treatment is unique, left me feeling overwhelmed. Where do I start? I’d gone from living an active retirement life, with two horses and lots of gardens to maintain, to requiring crutches for even one step. Instead of being independent, I was now fully dependent on my wonderful husband for help at home and an amazing barn community to care for my horses.
I dove into learning all I could about CRPS. Since I had a one-month wait for the pain management center, educating myself felt like an effective use of my time. The wealth of information, videos and resources on the https://rsds.org/ website shared action steps patients could take towards improved wellness. Many of the suggested lifestyle practices dovetailed with what I had already learned while earning my B.S. in Dietetics, training to become an Equine Specialist in Mental Health & Learning, and applying sport psychology techniques as a competitor at horse shows.
The suggested practices began to feel doable, but I wanted an easy way to remember them. I needed something to guide my journey and redirect the discomfort and overwhelm towards healing. So, I used the word GUIDE as a reminder of the self-care activities available to me. Every day, I picked two or more actions to help me stay pro-active. With consistency, these activities helped to sooth my nervous system and re-wire my brain which was stuck in a sympathetic pain response.
G – Gratitude. Name 3 things I’m grateful for today, no matter how small. Gratitude can shift our perspective to a more positive outlook and increased happiness. When we’re happier, our brains release hormones associated with optimism.
U – Uplifts. What uplifting elements or successes did I experience in my day? Maybe I managed to fold the laundry, stumbled on an uplifting quote, or laughed with a friend. Other days, I had to dig deep for positivity or create uplifts by choosing a funny movie, admiring the beauty of nature, or playing with my silly cats.
I – Initiatives. What initiatives, (even tiny adjustments), can I take to simplify my activity or enhance my mobility? What changes can I make in my lifestyle, diet or sleep routine in order to improve my health and quality of life - even a little? Listening to guided meditations helped me fall asleep when I couldn’t tolerate a sheet against my skin. Journaling helped me digest the knowledge I was absorbing and process my experience. When I could no longer stand, obtaining a shower chair made showering easier. Purchasing a stool on wheels, and keeping commonly used kitchen items at counter height, allowed me to prepare a meal. With curiosity, I looked for any positive feedback from my initiatives. Then, I strived to turn them into habits.
D – Diet. Knowing there is a strong gut-brain connection, I embraced an anti-inflammatory diet, eliminated nightshades and cut out processed foods. The more I used diet to tone down the inflammatory response in the brain, the less inflammation and pain I’d experience in my legs. Maintaining a food diary helped me keep track of what I ate and note anything that triggered a flare.
E - Education. Keep learning! I’d select a CRPS YouTube video to watch, or a book on neuroplasticity to read. Free apps offered numerous guided meditations to help me practice calming my nervous system.
Using my GUIDE gave me a course of action when I felt so overwhelmed and helpless. Hopefully, it can help other newly diagnosed CRPS Warriors!
Meet Destiny, My Largest Uplift!
Destiny is my key teammate for the CRPS walk. She is an unusual color for a critically endangered breed known as the Canadian Horse. Destiny has been my bright spark of motivation throughout my CRPS journey, giving me a reason to keep striving for remission.
Since weight baring is a challenge, Destiny will be doing the walking for me. By consistently using my tools, and with the support of my husband, friends, horse trainers and supporters, I hope to create my destiny of riding again during the walk on June 15! Together, my rare horse and I hope to raise awareness of this rare disease.
How to help:
- Register for this virtual walk by clicking "Join Our Team", ($25-adults, $15-kids).
- Share the page!
- Make a donation! Click "Donate Now".
- Enjoy walking or riding your horse in the walk on June 15!
Thank you for your support!