Posted on July 20th, 2012 by Admin
Editor's Note: Patti K. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
If you asked me two years ago “What is the most unthinkable athletic challenge you could endure given your debilitating pain” my answer would have you astonished, baffled and laughing in disbelief. But after completing the 2010 Honolulu Marathon, I would have the last laugh!
Almost six years ago after cleaning the house I sat down on my couch feeling a bit tired and a little sore, like you would if you pulled a muscle in your lower back. Two days later my big toe went numb and it is here that my journey began. Less than 5 months later I had back surgery…what I thought was a pulled muscle was actually my L4-L5 disc exploding. I've endured levels of pain that I wouldn't wish on my worst enemy and have lost track of the number of additional procedures I've had in my efforts to manage my chronic pain. At 46, I have the back of someone 20+ years older. Diagnosed with Degenerative Disc Disease and Neuropathy, I have multiple levels of effected discs, permanent nerve damage down my right leg from the 14mm extrusion after my disc burst and numbness in my ankle and foot. And yes, that big toe is still numb!
There are so many things I can’t do anymore…can’t play volleyball, tennis, racquetball, anything that can suddenly jar my back. No more roller coasters…I love roller coasters! But one thing I CAN do is WALK! With my doctors’ skeptical blessings and regular supervision, I trained for six months and successfully walked the Honolulu Marathon in 7 hours and 58 minutes! A truly amazing accomplishment that I would have never achieved without the support and partnership of my medical team (and a fighting spirit and attitude to match)!
It is because of my pain that I find myself on my current path. Despite many setbacks, I have persevered and because of what I've learned along the way, I wouldn't change a thing. I've spent the past four years helping facilitate a chronic pain support group and have recently been given the opportunity to develop a Patient Enrichment Program as a Patient Advocate and Educator. We are in the process of creating a multi-faceted program that will provide patients with the tools they need to become an active member of their treatment team, to utilize the resources available to them and to network with others who share their experiences so they know they are not alone! Our goal is to build a global community of patients who educate, enrich and empower one another to create positive change!
Nearly 80% of consumers go online to get information about their health care and more outlets are launched every day. Health Care consumers (patients!) now have a voice and, increasingly, that voice is being heard. Most importantly, patients now have an opportunity to build a community where support and sharing of ideas are paramount. This Scholarship would be a tremendous asset in teaching me how I can best utilize social media to reach out to everyone who feels they are alone, that they “can’t” do anything anymore or that their life is over. People need to realize that their life will be more than just pain pills, depression and loneliness. I am merely one of many examples illustrating how you can successfully manage your pain and LIVE your life! There are still bad days but my pain no longer controls my life; I am in control! I am very active on Facebook and use LinkedIn as well. I am interested in learning how to effectively use Twitter, blogging, YouTube and even Pinterest to reach our goals. I believe strongly that I can bring a unique perspective to the Summit as a patient, advocate and educator.
As health care becomes more patient-centered, patients become more technologically savvy and treatments continue to advance, I believe it is our responsibility to work together to ensure successful outcomes for both patients and providers. I would consider it a great honor to receive one of this year’s Patient/ Caregiver Scholarships and would learn as much as possible to create positive change!
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