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.

medtronic-nate-torgerson-crosses-the-finish-line-california-international-marathon-december-4-2016-photo-by-twinkle-vanfleet-jpg-large

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   

 

The Body, Mind and Spirit; Humanizing the Soul

The Body, Mind, and Spirit; Humanizing the Soul
By Twinkle VanFleet
I often refer to Quality of Life (QOL) when supporting or opposing legislation and/or certain topics aimed at the chronically ill or intractable pain patient . Quality of life is important! What is it though? I knew what I meant, but did others? Did those people I spent time with exchanging bits and pieces of personal belief and philosophies understand what it really was that I was referring to, or was it simply 3 words that had been tossed around in the vast world of healthcare and patients alike that had just become a more familiar reference term over time?

Somebody understood, someone had already knew precisely what I meant and what I had attempted to relay to others for decades. I didn’t know until after I returned home from being honored with The Bakken Invitation Award which recognizes outstanding contributions of service, volunteerism, and leadership. Each year, selected Honorees earn a $20,000 grant from Medtronic Philanthropy to direct to a charity of their choice. I didn’t realize until I opened one of the books that had been gifted to me as a 2015 Bakken Invitation Honoree by the man who most likely didn’t choose me solely, but who presented it to me at one of my weakest and most vulnerable public moments ever. As I began to read through “One Man’s Full Life” by Earl E. Bakken, co founder of Medtronic, I knew.

I knew that the man who had invented the world’s first wearable battery operated external pacemaker in a garage in northeast Minneapolis while everyone else was recovering from WW2, knew also. There was 46 years between his birth and mine, but someone else understood long before I ever could.

Health Related Quality of Life is the meaningful intent and purpose of giving a part of the self to another. A warm smile, soft caress, compassion. Anyone can want, need or desire quality of life. This quality is based on what we do with our lives, where we want to take it, and if we can sustain that quality we want or crave by what we’ve utilized from all that we have and that which we don’t. It’s really dependent not on the self, but the ego. Upbringing, teachings, education, competition, and lacking commitment to anything or anyone else.

Health Related Quality of Life is what we need to survive. There is no quality of life without a health related quality of life. Health related quality of life had become technology, pills, and sending a person on their way. The real intent of health related quality of life is the human experience. Humanizing patients will help their mind and spirit overcome challenges in the body.

Shrug someone off, remove their dignity, you also remove the very reason for fighting against disease and pain that our own minds already know how to achieve. Our mind is part of our brain it isn’t the brain itself. It’s our conscious, and sometimes unconscious being, yet never the less our higher being, our spirit. Break the spirit, you will break the body. Liven the mind and the spirit, you induce a will to “be“.

All these years, all the doctors and medical professionals, some my own physicians, others colleagues, above me in degrees, educational establishments, influence, and knowledge. I knew I knew, but now it was validated by a man who’s invented, done and given more in his lifetime than anyone else I could ever come to know.

It doesn’t take a degree to “get it“. All it’s ever taken is an understanding and belief in the human spirit and what it’s truly capable of, if not thrown away. I think I’m finally proud enough to say with my head held high, instead of my eyes lowered, that I don’t have a degree, I didn’t attend any fancy universities, I’m certainly not the sharpest tool in the shed, but I am brighter than the average bear. This is all I was ever suppose to be. All I was meant to do is validate those who came before me for those who come after me.

We’ve become a world that belittles at the first opportunity and blames others for what’s in our own power to change or make better. Instead, a people who hold back because they think they lack worth. You’re worth it, I promise! Some are still trying to teach it, still trying to proffer care in kindness and mercy above and beyond themselves, opening eyes and fluttering hearts, enlightening those who haven’t quite seen the light yet.

It doesn’t take a degree to be enlightened above the self and know a little better than the one‘s who tell you, you don‘t..

All it takes is a little faith.

Honorees with Medtronic Dr. Earl Bakken

 

To be continued

Ohana (For Dr. Earl Bakken)

by Twinkle VanFleet

Twinkle VanFleet 2015 Bakken Invitation Award Honoree_1

Front and back

He validated the spirit
And it’s heart
And restored the breath
Of a nearing depart

Acknowledging the path
And it’s hope
Diversity rising
It’s a slippery slope

Catching the reason
Determination and light
In giving to others
The fire and flight

for…

Life, love, and empathy
We have to discuss
Drowning
Counting
On all of us

7, 8, 9
Losing time
Sharing
Your paradigm

Break down,
Nothing on me
Fight and fall,
Nope pain can’t stop she

Crazy, maybe, perception
Not really though
Trinity, affinity
Visions and missions to lead for

She’s rising,
They know she(‘s) flying
As above, so below
The gift of devising

Got you
Got us
Got me
superfluous

Honi; spirit and power
The honoring art
Ha; the breath of life
A spiritual kiss of the hearts

Who could have known
It wasn’t alone
Ohana means family
Family is home.

For Dr. Earl Bakken, Medtronic Philanthropy, #LiveOnGiveOn

With love and admiration on behalf of myself and #iPain  www.powerofpain.org

Mahalo

©2016 Twinkle VanFleet/Golden Rainbow Poetry/All rights reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/  May be shared. Permission required for any other use.

Ohana means family. Family means no one left behind… or forgotten.