Patient Leader

It's been my passion and purpose for more than a decade to raise awareness, educate and advocate for Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome. After my own January 2001 injury which led to a late 2003 diagnosis, I began researching all that I could to help myself and others like me. Initially I studied all I could on Chronic Pain and secondary Depression. I began my journey creating an information website CRPS Advisory which was born in 2003 and developed in 2004. It followed with my blog RSD Advisory- Where Chronic Pain and Depression Collide. I created my first support group under a similar name. RSD(S)-CRPS Advisory Info and Support on MySpace nearly 10 years ago. As MySpace made changes so did I. I began helping another lead MDJunction's RSD Support Group and remained for over 2 years. I had already restored my Group on Facebook. I resigned from MDJunction to join the Power of Pain Foundation nearly 2 years ago. I have always enjoyed helping to spread the word, events, awareness campaigns etc of others who are also working to find a cure for this painful, debilitating, and often progressive neuro inflammitory-autoimmune disease which affects the sympathetic nervous system, the central nervous system, the autonomic nervous system, limbic system and many other bodily functions. As I've grown with the Power Pain Foundation I've had the opportunity to participate in the Convoy of Hope in Sacramento 2012 where I spent the day answering questions, giving out important information, providing free pamphlets, bracelets, flyers and more to the public and ended with a balloon launch in the name of RSD/CRPS and hope. I attended the Neuropathy Action Awareness Day (NAF) 2012 where I met Barby Ingle and Ken Taylor for the first time, helped with our booth, listened to wonderful guest speakers on the topic of pain and neuropathy and took notes. The Power of Pain Foundation sent my husband and I to attend the RSDSA Integrated Solutions to CRPS Conference 2013 San Francisco where I took in much information and met other's in the community. I have spent time Co Hosting the Living with HOPE Radio Show on the Body, Mind and Spirit Network on BlogTalkRadio with Host Trudy Thomas in the past and have returned with her each Monday at 4 p.m PST. I've produced 2 video's with the assistance of my son Kurtis the National Youth Ambassador for Power of Pain. Faces of Pain Video 5 and RSD/CRPS Limbs Montage which can be viewed via Youtube. I participated in this years Thanksgiving Day Balloon Launch 2013 and I am now working with Barby on California Pain Policy with SPPAN and am happy to be apart of the Prescription Task Force so that just maybe we can make a modicum of difference for all chronic pain patients everywhere. These are just a few things I've been able to do despite my own issues with pain and CRPS. They are few and far between, but I have to be proud of my efforts however small. If you've wondered why I've mentioned 3 people in my own profile it's because I appreciate them and what they do for all of us. The 5 lights of my life are my husband of nearly 27 years, my 3 children, my black grandson, writing short stories, poetry, lyrics, raising awareness for several issues and living a life of service. I am an avid researcher and I crave knowledge. I am diverse in all that I am and all that I do. I thank you for taking the time to view my profile.


Best in Show: Community or Forum Best in Show: Blog

Twinkle (real name) is a great leader of an online community. Twinkle helps raise important issues on RSD, chronic pain, and access to care issues.  — Barby


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