Editor's Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post
for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.
Here is Peggy Renee Pickle’s Essay:
My name is Renee’ and I am a patient and a patient advocate. Today I find myself on a journey of illness that began over four years ago. I have severe Functional Gastrointestinal Disorders (FGID’s) that include IBS, functional abdominal pain and GERD. Because of the severity of my FGID’s my local doctors could not treat me so I am now a patient of one of the world’s leading doctors in treating FGID’s and a patient of Mayo Clinic in Jacksonville. Every day my life is consumed with my illness from trying to determine what minimal food and drinks I can consume that will keep me from starving and will not cause my symptoms to become unbearable, to battling constant fatigue, to battling the negative side effects of the many medicines that I take. All of this is on top of being a full-time mom and wife, a part-time CPA, a Sunday School teacher, and a soccer, baseball and dance mom.
As I realized the extent and prognosis of my illness, I had a choice to make….sit back and feel sorry for myself or step up and reach out to help others who are suffering as I am. Because of my determined spirit, I chose the latter. I chose to try and make a difference in my own life as well as others by becoming a patient advocate. My advocacy work actually began through facebook. It was on facebook that I found IFFGD, International Foundation for Functional Gastrointestinal Disorders, the premier non-profit organization that supports patients with FGID’s. From that point, I signed up to go to Washington DC in April 2010 with IFFGD to share my story with legislators. This first Hill Day was a success and I found this new world of advocacy exhilarating. Now, I was no longer a victim of FGID’s, I was an advocate working to improve the lives of thousands of others. I have continued to work with IFFGD by attending a second Hill Day this past June, organizing their first fundraising walk in my hometown, meeting with my local Congressman to request his support for legislation to further research of FGID’s, and talking with local doctors and friends about the work of IFFGD. I also began volunteering at the University of North Carolina Center for FGIMD’S, where my doctor is Co-Director. I have helped them with mailouts, worked at their Research and Patient Day Symposium, advertised their Online Chats about FGID’s on the internet and volunteered to participate in research studies. Along with a friend, I helped start a facebook support group for people with FGID’s, and I have started a blog to share my journey on this road of a chronic debilitating illness. This summer my son and I started Rome Runners, a group of patients and advocates who will run in the Disney World Marathon Weekend Family 5k on behalf of the Rome Foundation. They provide guidance to health providers on how to diagnose and treat patients with FGID’s. We hope to raise awareness of FGID’s and financial support for Rome Foundation. What I love is that so many friends, family members and strangers have been encouraged through how I have chosen to live my life with this lifelong illness.
Through my journey I feel that I have much to offer at the conference as well as to service in the greater good of the health community. I also have so much to learn to enable me to become a better patient and advocate. As a patient having been with doctors who don’t understand and don’t care to two of the greatest, kindest, most compassionate doctors, I feel I have great insight to lend to doctors on how patients with FGID’s want to be treated. I want to learn how to improve my communication skills, and how to better use social media to reach out to others who are suffering with chronic illnesses. I feel my participation can expand my knowledge and realm of influence so that I can make my life as well as the lives of others better.