Facebook Deactivation | RSD(S)-CRPS Advisory Info & Support Group

By December 2nd my Facebook was deactivated. Even though I had considered it over the years, I was worried about losing my group and pages as a result, especially my RSD(S)-CRPS Advisory Info & Support Group created 13 years ago at another location. It was a spontaneous decision and one I have not regretted once.

This Group now belongs to Trudy Thomas featured Blog Talk Radio Host of The Body, Mind and Spirit Network and honorary leader of my group since it was moved to Facebook. If I choose to return it will be both Trudy’s and mine. Craig Fletcher remains an Admin/Leader and Erik and Kurtis VanFleet remain admins for the purpose of recovery. So that there are no misunderstandings Trudy is now me for the Group. Her decisions are as the current owner of the group. I have no doubts in her ability, choices, or decisions. I trust her to fulfill my vision, passion and purpose for which it was founded for.

Trudy is not available for drama, or he say’s she say’s. She would be available as able, as I was, in the event of an emergency situation such as specific breaking of the rules that were established long ago, or those being malicious or instigating toward one another. I may be involved from the background with updates from Trudy though I will not require them.

I’ll always want to know if all is okay. That’s because I care a bit too much and to my own detriment. Being an empath/sensitive only causes me to feel your pain, feelings, thoughts, dislikes, and emotions I rather not feel of you because then I’m over flowing with mine and yours, too.

Trudy is learning to live again and without her husband Mel of over 40 years. It’s only been a month since she lost him to inoperable cancer which had only been discovered 4 months before.

About 2 months ago I had posted on Facebook about Trudy, her situation, about someone we all knew (most of us) and it was a long post but I hadn’t shared who she was. This post was taken so far out of context from a few people believing I was talking about myself that I was dumbfounded. This wasn’t the only post misunderstood. I’ve posted random comments about family, life. I’ve shared meme’s, music, lyrics, poetry that of other’s and some of my own. I’ve shared lines or stanza’s in pieces and parts. Even those are taken adverse. I’m well aware that once it’s on the internet it’s always on the internet. I’m aware that if we make a post that we can’t expect others to comment if we put ourselves out there. Of course. I would never hop onto someone else’s page to scold them or entice an argument. I have however replied on my own page when someone bounces onto mine.

My point is that not everything is internet or online related, and sometimes things are. In this post it was online related, yet taken as something else, when an offline related post is assumed to be about online people. The perception is so often opposite of the intent. Left to interpretation by tone of type. The assumed tone of voice or mannerisms in the typed form of communication.

Please be mindful of Trudy’s loss. My heart continues to break for her.

Facebook is nothing but a trigger for me in my own healing and progress.

The Edge. There is no honest way to explain it because the only people who really know where it is are the ones who have gone over.
~Hunter S. Thompson

I’m still doing well since completing the Gohl Program on the 28th of October and will continue to provide progress updates on Manual Ligament Therapy (MLT) as able.

I’m still on Twitter @rsdcrpsfire and my other social media accounts are in tact at this time. I’m still an avid researcher and as hungry to learn as I’ve ever been. I’m also looking for work to attempt to provide for my husband and I.

Since resigning from iPain I have not joined any other organization, nor will I. I’ll share and support as I always had.

I made it to the California State Capital to support Mr. Nate Torgerson, Chief Engineer, Medtronic Stimulation Pain Therapies on December 4th at the California International Marathon where I was right there near the finish line to support him as he crossed it.

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Medtronic Chief Engineer, Pain Stimulation Therapies Nate Torgerson crosses the finish line at the California International Marathon in Sacramento. Photo credit: Twinkle VanFleet

I had the honor and privilege of meeting him later that evening for dinner.

Great conversation, sharing, learning, and food at Zocalo’s in downtown Sacramento. He asked me about my experience winning the Live On Give On Bakken award, and I told him what a surprise it had been to learn that I had and the honor it was to receive it from the hands of Dr. Earl Bakken himself.  Dr. Bakken is the co founder of Medtronic. Forever grateful to be chosen as 1 of 12 recognized internationally and being 1 of 2 from the United States. Twinkle VanFleet, Sacramento California. 

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Twinkle VanFleet, Sacramento, CA, LiveOnGiveOn.org recipient. Original Press Release Photo.

Another honor was being contacted by Mr. Pat Anson of the Pain News Network to consider offering comment on an upcoming article. I accepted.

Opioid Pain Meds Rarely Involved in Suicide Attempts
December 05, 2016 By Pat Anson, Editor


I’ll keep sharing my story, what happened, how it happened, when it happened and anything else I can to support those lost by pain related suicide. As well as those survivors who can never go back to the moment before they attempted to take their own lives. I don’t get to go back and pray for an option, help, that wasn’t there but I can go forward understanding why they did it, what the breaking point was, how severe physical pain was to go against all they believed in just to be free from pain and suffering.

My casting calls are still booming with possibilities since I updated a couple of weeks ago. For now, I’m deciding, and brushing up on the various characters I can play.

Offline, I have an amazing reputation, respected in advocacy, legislation, held in wonderful regard by those that matter, including those in authority, business, politics, and healthcare even when in disagreement over a bill, debate or topic. Online, unless we already know each other, or have met in person it will rarely be the same because what you see isn’t always what you get and what you get isn’t what you’ve already given.

It’s all a stage.

Be good to one another.

~Twinkle VanFleet

#StrongerThanPain

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6th Annual Neuropathy Action Awareness Day

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RSD(S)-CRPS Advisory Info & Support Group

CRPS Advisory LogoSupport Groups are necessary for those who need understanding and comfort when dealing with chronic illnesses other’s don’t understand. We offer one you can feel at home in.

RSD(S)-CRPS Advisory Info & Support Group

Years ago I had an RSD Support Group at MySpace. At the time it was one of the largest support group for RSD/CRPS there. As MySpace went through its changes and removing some features, I went to work as a volunteer Support Leader for MD Junction at the Reflex Sympathetic Dystrophy Support Forum. I’ve been a Leader there since 2009 and second to the top in seniority.

Since I lost my group at MySpace, I waited to create another of my own until I felt confident with the venue I would decide to hold it at. Since millions of people are on Facebook for various reasons I chose to create it there since there are several options available and a very large and spread out community of pain patients.

Less than a year ago I created the RSD(S)-CRPS Advisory Info & Support Group. I was slow on the start up since within a week of creating it, I ended up in a severe and long lasting flare up. The Group is doing well and growing at a steady pace.

This time I am not running solo. In the past I’ve been an advocate and spokesperson for RSD/CRPS, promoting, advertising, endless hours of research, writing essays and articles, sharing accurate information, staying updated, maintaining my website etc the best that I could. All by myself. It’s really hard. At least for me these last couple of years. I’m in my 11th year of CRPS. My energy is minimal.

Now I have someone to work with me. And currently we’re both working on fundraising and awareness projects for the Power of Pain Foundation as a team and in conjunction with our group. My Co Administrator Wanda will be raising awareness via 2 Expo’s and I’ll be doing so by holding a balloon release project.

We’re also supporting the POPF via Causes. Our page is called “Help the Power of Pain Foundation Assist Those with RSD/CRPS & Other Neuropathic Pain Conditions

Our group is devoted to the support and guidance of RSD/CRPS patients, family and friends of.

Our mission is to teach and be taught…

                                                   …It’s our hope to educate and learn.

We’re a family oriented group. Caring and compassionate. Stop by and take a peek. We would love to have you join us and become part of our online family.

We have a Wonderful Co Administrator (Wanda) and Great Group Leader’s. Our discussions include pain management, the pain we endure on a daily basis, medications, alternative methods of pain control, the use of vitamins and supplements, depression, biofeedback, cognitive beliefs, coping strategies, flare up protocols, clinical trials, various therapies and techniques, meditation, yoga, the use of distraction and modalities, physical therapy, each other and so much more.

We also allow you to share other RSD/CRPS related information sites, books, videos, including your own website, blog, foundation, organization, or media pages. This is for the purpose of spreading further awareness and information around the web and hopefully off also.

All we ask is that you don’t spam us.

We would also be thankful if you shared us with others as well.

RSD(S)-CRPS Advisory Banner

Click on our banner above to go to our website

Hope to meet you in our Support Group!

Wishing you pain eased days and nights,

~Twinkle

Faces of Pain Video 5 by the Power of Pain Foundation

The Power of Pain Foundation is a 501(C)(3) Non Profit Charity dedicated to the heath and welfare of patients and caregivers struggling with Reflex Sympathetic Dystrophy RSD, Complex Regional Pain Syndrome CRPS and other Neuropathic Illnesses such as Diabetic Neuropathy and Post Cancer Pain.

There are 10 million people diagnosed with RSD/CRPS in the U.S. alone. This is a  chronic, painful, debilitating and often progressive autoimmune and neurological disorder that affects the Sympathetic Nervous System and the network of nerves along the spinal cord that send messages to the brain.

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These are the faces of survivor’s

This video was produced by Twinkle and Kurtis VanFleet of RSD(S)-CRPS Advisory