Facebook Messenger

I’m not all that tech savvy as far as Facebook goes. Especially with Facebook and Facebook Messenger having the ability to be 2 separate programs. On my Kindle I have the messenger app with the chat heads. On my laptop I only ever used the messenger from the main Facebook page itself. On my phone, I never used the messenger app.

Ever since deactivating my Facebook account again, I’ve received a few notifications from messenger on my Kindle. I haven’t tried clicking them open, but I can see the first few words of each message without doing so. I’ve verified that my account is inactive.

I’m hesitant to click on them because I don’t know if it will reactivate my account.

If anyone has any tips or information regarding messenger working as an individual communications platform with Facebook connections, please let me know.

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I’m not ready to turn my account back on. I can’t even believe it’s been 10 days since not using it again. Time flies.

Staying in touch with people I currently have no access to otherwise would be nice. I don’t sync my contacts to other programs so I do lose everyone when I take my breaks.

Thank you for any information that you may offer.

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Public Apology

I extend to each of you, any of you that I may have offended over the last year an apology. I’m not sorry because I did anything wrong, I’m sorry because I lost control of managing pain. I inclined my head to bullies, I smiled, and shrugged off any compromises. I shimmied on like I never heard, never seen it, and rarely did I admit to knowing it.

I’m really sorry that I let Facebook bring out the worse in me. I’m still trying to understand this for myself. I let it become a “I don’t care” platform to anyone who either stalked me for their own organizations or disliked me for the one I was with.

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Reductions in stressers and triggers have me feeling so much better. Better able to continue on with strengthening myself, stretching, moving, healing, accomplishing.

I don’t want to care about what I let you see toward that end, yet I do. I don’t want to care about who you thought I was before it all. I will. I may not always understand why from your point of view but I understand from mine the persona I threw out. I think that I demonstrated fairly well by shoving everyone so far away and eventually giving people a reason to gossip with potty mouth words and pretty photos that I achieved what I wanted at the time. Disconnect.

I never wanted to get close to people, so I kept everyone at a distance. I would reply to the questions regarding CRPS/RSD, Chronic pain, SCS, legislation, depression that you asked, but I’ve not in all my years using the Facebook Platform engaged on a personal level with more than I can count on one hand. Only one person in the pain community knew me, enough.

Wow, I must have issues, right? Yes. I can’t do the gossip, drama, he said she said, did you hear what so and so did type of stuff. Why? Because I haven’t the time or concern for it.

Any relationship can be repaired enough for people to respect that agreeing or disagreeing on something isn’t what defines them, but instead that which allows them to proceed forward with an open mind. Learn from one another.

If was in an IM with only 2 or 3 people a day, exchanging 5 messages each. I’d never be able to do anything constructive, maintain pain levels, scrub my toilet. One has to always be available at some point, even if not on the spot, to reply, and then the conversation continues until it either trails off or is abandoned. For those of you who do engage all day long. Kudos to you. Friendships? Okay. Communication? Okay. Support? Understood.

Facebook; the place you can check into, but hard to check out of.

I’ve been running on empty with anxiety highs and shifting depressive moments this entire year. Trying to manage both chronic pain and narcolepsy evenly for myself. I did do it on my own. No one’s taking that from me.

I can recall pieces and parts of this year as if I was viewing an old 8MM reel of 2016. I can recall vivid moments, yet I’ve lost other memories and I really don’t know if I ever created them in memory to be able to remember.

That’s how the mind protects itself from trauma and perceived threats.

I’m not much different than all of you just uniquely challenged. Some of you the F word is in the first sentence, others, rude, opinionated babble lacking knowledge, certainty, or open mindedness to learn the facts before stating inaccuracies.

Hypothesis? Please do present with an educated guess before assumptions get the better of you.

Ad hominem;

Argue the topic. Don’t attack the person as an individual, you know, the people you judge without even a presumption because you know it all and per your perception they’ve done it all wrong, already? Attack the position, not the person.

Online is too much people at all given times.

Notice how I said “Too much?” rather than “Too many?’

Be good or be good at it! Choices.


Overcoming The Stress Response by Twinkle VanFleet 3/9/15

https://rsdadvisory.com/2015/03/09/overcoming-the-stress-response/


I don’t want to be associated with pain, chronic pain, illness, disability, any of it.

Not on a personal level.

I never did.

My denial was my acceptance all along because I’m still on my legs. I’m not incapacitated. I’m not in that corner by myself yet watching the world move and unable to move with it or be a part of it.

Today I found the wedding vows we wrote to each other when we renewed in 2012 for our 25th wedding anniversary. That was the first I ever walked down the isle to him in a Church ceremony. I’ve been his since I was 17. I got this! For us.

I’m sorry I showed you someone I’m not. I’m not sorry that it wouldn’t be beneath me to act in any type of way dependent on a situation.

I’m sorry too for those who couldn’t ever ask, but assume, and for those who knew they were inciting confrontation when they chose it. That’s where I had enough. That’s where I changed.

There’s consequences in choosing.

For all of us.

 

~Love and light

 

 

 

 

 

Squirrel

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No Facebook!

I woke up early this morning. I started Netflix to find something to cuddle up with and my photo was back. It had not been there since deactivating Facebook. So I pull my own name up and WTF. I message Trudy and she’s like yeah you’re back. Even in your group.

I’m like “Nooooooooo!”. How? So I go in and deactivate again immediately.

I’ve been dealing with crap like this for years. And this year, I’ve had periods of time with no internet access whatsoever, yet I still end up logged in, or rather my accounts do.

Squirrel!

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