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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Live On Give On | Applications for the 2016 #BakkenInvitation Award now open.

Twinkle receiving award- January 16, 2016

Twinkle VanFleet, Sacramento California. Bakken Award Recipient 2015. Received from Dr. Earl Bakken, Medtronic Co Founder in Kona Hawaii, January 16, 2016.

About the Bakken Invitation Inspired by Medtronic co-founder and philanthropist, Earl Bakken, the Bakken Invitation celebrates and connects people who, with the help of medical technology, have overcome health challenges and are now making a difference in their communities.Empowering patients to better manage their health is a key element in Medtronic Philanthropy’s approach to expanding healthcare access to the underserved. By sharing and celebrating stories of patients from all over the world, the Bakken Invitation is designed to not only provide valuable information and inspiration to others, but also foster a global movement of people who “Live On. Give On. ”Get involved at www.LiveOnGiveOn.org

1.

Share a Story For every story shared on the Live On. Give On. global online community, Medtronic Philanthropy will donate $10 to Project HOPE to help ensure that medical technology is available in underserved communities around the world.2.

Apply or nominate  The Bakken Invitation Award recognizes outstanding contributions of service, volunteerism and leadership around the world.  Selected Bakken Invitation Honorees will earn a $20,000 (USD) grant from Medtronic Philanthropy to direct to a charity of their choice, and a trip to Hawaii for a celebration event to meet Medtronic co-founder Earl Bakken.

Applications for the 2016 are now open.

Applicant Criteria: Individuals who, with the help of medical technology, are giving their time and talent to improve the quality of life for others. Nominees must be 14 years or older.Individuals must be using an approved medical device therapy to treat one of the following disease categories: heart disease; diabetes; chronic pain; spinal disorders; or neurological, gastroenterological and urological disorders. All applicants with eligible medical technology are welcome to apply, regardless of device manufacturer.Applicants must have an established relationship of involvement with a legal nonprofit organization for six months or more.3.

Connect with the Community Medtronic also hosts a global online community where all patients can share how they are giving back after receiving extra life from a medical device.

At http://www.LiveOnGiveOn.org, they can connect with other people who share similar health conditions and charitable passions in their hometown and around the world.“What are you doing with your extra life?”That’s the question from Medtronic co-founder, inventor and philanthropist Earl Bakken that inspired the Bakken Invitation. He acknowledges that his pacemaker, insulin pump and heart stents have given him “extra life,” time he uses to support causes he cares about. Earl knows the gift of extra life is powerful. And while each person chooses how to use their extra time, it is his enduring hope they consider how to give back, in big or small ways.

Connect: Website: LiveOnGiveOn.org Facebook: facebook.com/LiveOnGiveOn

Twitter: #LiveOnGiveOn

Source: Live On Give On

As a 2015 Bakken Invitation Honoree from Sacramento, California. I wish you all well.. and enough.  If you need any help with the nominee or application processes, I’ll do what I can to assist you through it.

Honored, privileged and grateful – Grant recipient: @powerofpain International Pain Foundation, your power of pain headquarters.

We are turning pain to power!

InternationalPain.org   PowerofPain.org   PowerofPain.org