Survival Instinct

My first experience with suicide was when I was barely anything more than a toddler. I can still remember it all so vividly. Wandering an empty house, trying to care for my crying baby sister who was still in a crib. My life as a caregiver began that day. My sister and I are 2 and one half years apart in age.

My mother and father were 10 years apart. To be more specific, 9 and 1 half, the same number of years our son is to his oldest sister and the same amount of time between our son and grandson.

My mom inherited 3 children from my dad. She was 19, him nearly 30. She was suddenly the step mother to children between 6 and 12. My sister and I are her only children with my dad. My mom and dad were married 25 years when he died of cancer.

My dad was a very dominant man who used his hands on her at his will. I wasn’t 16 yet when he was first diagnosed with lung cancer. He had a partial lung removal. When I was 22 it returned with a vengeance. By this time I had been married 4 years and had 2 beautiful daughters. That same year I lost my twins. One ectopic the other was lost during the exploratory laparotomy which would make me never be able to have children again. I would give birth to a son months before my 30th birthday. 3 years later I would have the injury that led to CRPS. 1 year before my injury we lost our rental home and it’s entire contents to a fire. My husband and our son was in that fire. My husband not only threw our little son out the window, but managed to, having already been burned make it to the connecting unit and help them and their baby out of it.

I worked on the main avenue and I heard all the sirens. I remember my heart sinking of fear and then I dismissed it as an overactive imagination. 30 minutes or so later an officer came into my work and asked for me personally. He said “Ma’am you need to come with me now”. I asked “Why?”. He responded “your home is ablaze”. “Where’s my husband, where’s my baby? Tell me their alive. He said “I don’t know”.

I dropped to my knees because I knew I left them sleeping when I went to work. When we arrived 2 blocks were blocked off and I could see the flames raging out what had been my kitchen window into the street. He told me to stay in his car but I couldn’t. I ran toward my house. There were so many people in the streets, fire, rescue, police, even the American Red Cross was on the scene before I was and I don’t think that officer could have gotten me there any quicker. I ran away from him and into chaos. Eventually I seen my husband near an ambulance. His fingers were burned so badly that they looked like freddy krugar knives. Part of his ear was melted off, all facial hair gone. His chest was burned and his feet were bare. His face was burned and blistering, he had severe smoke inhalation. My baby was already en route to the hospital. I’ll never be able to describe that emotion. My husband was taken after I got to him. My son went out the window in a diaper, my husband was in his underwear.

The red cross put us up in a motel after assessing all that it was. It was all gone. We still had our jobs. My husband never took disability for that event instead he used his accumulated sick leave and vacation. I walked to work for weeks. Between the fire and the fear I reduced my weekly work hours to be with my children and as a result when I became injured it would alter compensation for the next chapters of my life. While my WC disability rating is above 70 percent I would go on to received $76.04 a month. Less than the minimum under the state. I would receive only “wages” instead. Had I not lessened my work hours the quarter before, my lifetime stipend would have been considerably more.

My career prior to this job was high management. Restaurant Management. I took that job at the time so that I could be farmer’s little duck without any title or responsibility other than my own cashier position. I was the manager on duty the night of my injury. I wasn’t a manager. What I was is someone often used for another persons gain. Someone who would give, and then give some more. Sort of like the last 16 years of CRPS as well.

Within a couple of years of that first suicide experience I was molested for the first time. That would continue for another 2 years at least and because I was the oldest of my sister and I, I would end up taking the brunt of it for her.

I learned really young to hold it. I learned so well that by the time unrelenting physical pain came I couldn’t show it enough. Not out in the world. Only online. Only in words.

Facebook is one of my flaws because it becomes too easy to say too much even if the intention is well.

My birth daddy, no matter how hard would lead me into never being able to speak up for myself. He didn’t allow me to complain or not feel well. Just like my mama. My mama never had a voice, couldn’t laugh or play. She couldn’t have friends and she couldn’t want to be around her own family. Even when she went to real-estate school she was accused of doing something wrong. I would end up submissive and someone who could only give, but never receive.  That man did me right even so. I would be the one to close his eyes when he died. I would be the one to pry his hands off the hospital bed railing that he must have grabbed onto as he was taking his last breaths. I would be the one to wake my mom when it was over. My dad died in the home of my husband and I are our 2 little daughters.

I would end up someone who would give everything above herself. I would end up being someone who could hold intense pain so well that not even a professional could recognize it without diagnostic proof enough to believe.

I would end up losing another child after the same injury that led to RSD/CRPS, one I never thought could be possible because I was told it wasn’t possible. I would lose that baby because of consequences directly related to it. I have finally let that go to the extent that I carried it just this year.

December of 2012 my husband had a quadruple bypass. He had his first heart attack at 37. 2 stents were placed in his heart. He had another heart attack within a couple of years. He was diagnosed with Diabetes during the first. I never left the hospital and because I couldn’t drive, I slept outside in the van in a really hard winter.

Less than a year before that our son had a Traumatic Brain Injury. He was intubated, and in a coma. He sustained a severe trauma to his frontal lobe in addition to other areas of his brain. I never left the hospital for that 11 days either. When he was 17 and his back was being evaluated due to the head injury we learned from Shriners Hospital that he was born with birth defects of his spine. I’m grateful that the doctor never told me he was in trauma as I gave birth to him because the cord was wrapped entirely around his neck and his body. The doctor literally spun him out of me. I gave birth to Ozra entirely natural. Had I known, my body may have reacted in fear and inadvertently caused his death.

In 2013, our oldest daughter would be diagnosed with a rare liver disease called EHE. She’s been on the liver transplant list. I wanted to be a living donor for her but because I had part of my liver removed just months before, and because I also have lesions on my liver in other areas, and because the vessels in mine are adverse, I haven’t been able to go forward. If I die, my child will have my liver. It’s still good enough for someone who needs one. It’s not good enough while I’m living.

My daughter Rikki has served in the U.S. Army. She would have been deployed to Afghanistan with a rifle in her hands. A military training session would bring her back home. She’s never sought disability compensation. The incident to be clear was not her fault she was just someone receiving the worse of it.

Our children are 29, 28 and 20.

I would be fine through it all. I would fake it to make it. I would compartmentalize all of the before in order to survive CRPS and coexisting diagnosis’ and developments. . Until physical pain reached a level I couldn’t breathe through, think through, or feel anything else through. I had fell into the CDC Guidelines being created and implemented, the physicians who became afraid to prescribe or consider us as anything more than the less than that we became.  I would be fired from pain management of 12 years 6 days after that first suicide attempt.

The first time I attempted suicide on Valentine’s Day of 2016 I was 11 days off medications. Medications I had appealed, won, yet never received. I wanted to be happy I survived. I wasn’t. The second time April 19th of 2016, I’ll never know how I survived that one. The 3rd time, January of 2017, I understood after that I’m not obligated to anyone. I’m not responsible for anyone other than mine. I don’t owe anyone anything that I didn’t return mutually already.

I know what I’m indebted to and it sure isn’t anyone here.

I love my mama who I’ve only seen but a few times in 20 years, and I love both of my fathers equally because one gave me my first 22 years of life and the other has been for this rest of it. But most of all my dad now has given my mom everything my dad couldn’t give her. A life without being hit, belittled, or scorned. My dad suffered from his own mental health dilemma’s because he was cheated on in his first marriage. He believed my mom wouldn’t ever be faithful. She was and she is.

0000746_i-love-this-crazy-life_265

I would end up someone who wouldn’t take any kind of ka ka from anyone, anymore.

Even at my weakest points, I’ll always survive you.

 

 

 

A Sleepless Night

Sacramento is facing a storm. It’s already beginning. I can hear the rain on the windows and feel it run through me. On the bright side, I can literally feel nature, on the darker side why does everything have to be so loud? Amplified. I can’t sleep! I slept until after 3:00 p.m so I’m sure that’s not helping.

We need to leave out of here for our kids house in 8 hours. For one I need to soak in their tub. Ha! Two, I’ll already be there for my son to take me over to cut my hair.

Maybe that’s why I’m still awake. Because I’m not backing out from doing it this time. Anxiety? I’m actually doing something unique in the process. Perhaps others already have. In fact, I’m sure they have, but no one I know has or has even brought it up to me. I can’t tell though for now it’s a secret. I can’t just cut it off and leave it like that. It has to have an element of creativity and still be a part of me, at least. ~laughs

Okay, maybe I’m anxious about Sunday, too.

3 of my dogs are caught up on their shots and tagged. Done! Phew! I still have some really awesome acting opportunities via my casting portal. I haven’t given up those chances since they started rolling in and this time around it’s my choice to do or wait to do. I think. lol. Unbelievable opportunities really. The only difference between then and now is 25 years. Ouch, I know. But my age range is 30 to 60 and that gives me something I would have never had at 22 because at that time I would have been 16 to 30 at best. Woot!

My best asset is the multi ability to play various characters. I’ve had an accent since I learned to talk yet I’m a California girl so it never made sense and no one else around me spoke that way for me to pick up on their talk. I do clean it up for in person, sometimes the phone, but as I grew and diversity became me in other aspects of life, I also picked up slang terminology. Don’t we all? This is my blessing in acting. In Voice, I’m Mezzo. Also known as Mezzo-Soprano. Soprano and Alto. There’s never been anything about me singular. It’s always at least one more or opposites. Yin and Yang.

That’s some pretty deep shit for one who was suppose to be mentally and physically retarded. Who was bright enough to start college at 15 with an education in Law and Drama at the same time. Get it? Only certain mindsets can be either. The law has to be able to know a criminal mind enough (by their own instinct, thought and emotions) to do the job. They have to be both light and dark. And the actor has to be convincing enough in character and/or another persons story to become believable. Understand?

When I write poetry or lyrics not everyone will know who or what is being written about. Why? Because I write it from different perspectives. Some my own, some through the eyes of others or as the voice of someone else.

I love it like that!

My speech ability is improving again for the most part. For a long time I couldn’t talk without stuttering or forgetting on the spot.

I play memory games for recall. Some of my YouTube video shares may show thought, recall, or hesitation, but they aren’t so slurring or stuttered. Really, even though pain had been hard, I’ve continued to do some awesome things. Some of those began over a decade before I ever had CRPS.

When I first left iPain I told myself heal. Just heal. Then I started moving through the 5 Stages of Loss and Grief http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/ even though stage 1 was a consequence of my own actions.

As each new day began, or maybe I should say as each night ended, I would fight with myself over tomorrow. On one side I told myself just leave it all behind. On the other I told myself I couldn’t. It was after the fact that I tried to go back, even if a little, but I was assured that I was done. This was okay because it was me after all who changed it.

Consequences.

Then a couple of weeks later, wow.

We all know or should know that our choices today, may not ever be a choice we’d make tomorrow and choices of tomorrow shouldn’t necessarily effect or reflect on all that was in our yesterday. But they do.

Why? Human emotion. If I feel bad and someone else feels bad a – and a – = -.

In the same sense if each party is in acceptance + and + = +. Yet if one feels bad and the other doesn’t. – and + = negative.

I can make $1 be $5 not just at home, but in business also. I also know $5 can end up being only a dollars worth if not used right.

I’m a critical thinker. http://www.criticalthinking.org/pages/defining-critical-thinking/766 documented and like my grandson ‘Tai who’s been in GATE http://westmore.wusd.k12.ca.us/gateeducation and has received honor roll recognition since he began school (He’s 10), I was also part of the MGM (Mentally Gifted Minds) program growing up.

critical-thinking-3-728

What does all this mean?

I suppose it means

“It’s never too late to be who you might have been”

 

 

Up Above The World So High

I’m beginning to find interest again in all the things I missed out on or failed to even recognize anymore because of pain, weakness and depression. Yesterday I gazed at the slowly moving clouds in the sky all day. Imagining the heavens above and the cosmos as being the same. Wishing I could fall into them like I do with all the feather and down pillows that surround me when I lay down to rest or sleep. I want to play in those clouds and bask in those feathery plush particles above the earths surface.

clouds-sacramento-december-16-2016-image-source-twinkle-vanfleet

Clouds- Sacramento, California. December 16, 16.

 

I had believed for so long that my only worth was in the pain communities and legislative matters that affect people in pain. I haven’t disregarded that belief. It’s all part of my story, my journey, but now I’m realizing that I am worthy of more than just pain.

Pain and pleasure.


Quoted from Twitter @rsdcrpsfire December 15, 2016

“I understand now. You don’t know me because all you met was pain. Makes sense because you never met the person without it.”

“I wish you knew no pain. We’d have never met w/out it & bc of that… I’m grateful that I had to hurt too much to be a part of any of you.”


I’ll never be without ailments of one sort or other, too many, but I can be without most of them despite it all.

I want to wake up to new days now and try again even when I go to sleep hurting from accomplishing things I haven’t done in years. The things I do daily to promote strength and healing. Even when the bouts of MDD and SAD have me sliding a little.

I don’t want to be a person only known for pain because I’m not pain.

I’m  me.

You might even love this person with less pain, little pain, no pain, in remission, more than you ever loved the person who only felt pain and was destroyed over it.

You might.

That person, whoever she was, was the one on TV, in posters, in the news, published in hard print, audio online, etc and so forth. She’s the one who was a publisher, high management, who was always upbeat, playful, funny, and high spirited even in crisis way back when in order to relieve pain from others. And she did.

Every new day is getting closer to that someday that wasn’t going to be possible again in this lifetime.

Now it is.

 

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.

no-stress-adoptionstar

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

 

 

 

 

 

Words

Diversity by Twinkle VanFleet

Diversity by Twinkle VanFleet

3 weeks solo and trying to decide whether or not to merge all of it here. All of it. The pain, the passion, all that purpose, essays, the filed away lyrics, the unpublished poems, the soft erotica, those short stories, the dances. Dances?

Words.

I’m guessing I’d have to show you, you’d have to read it for yourselves. 20 years of being out there and circulating already.

Expression, adjectives, descriptive, alluring.

Unrelated to the pain communities. Though I suppose that there would be relief, ease, laughter and a sense of distraction in what I could have been providing all along.

No worries.

It’s only just begun.

Again.

x

 

 

Adjusting

You don't owe anyone anything... You owe yourself everything. By Dyversiti. ResizedIt’s not all sugar plums and dancing fairies even when bodily pain is minimized to any degree.  Especially in the injury that led to RSD/CRPS and the devastating consequences that just hasn’t let me forget. It has nothing to do with the loss of work, inspirations, or goals that might have been. The regret has remained heavy because of the manipulation involved in a decision, one I would have never considered had I not been told from health care providers that doing so would prevent a detrimental outcome and allow possibility in recovering. The choice was for the ones I already had. I never got better and as a result I not only felt deceived but also used to reduce cost and care for both of us.

I’m trying to tell myself this is what it was for. Today!  It just took 15 years to get there. I’ve already told me how stupid I was for believing in others when I knew better and that led to future distrust. I had already overcome, mostly, other trust issues and there I learned to build my wall so much stronger than it was before.

So here I am still trying to clean up my own mess from the first few months of this year and its aftermath that’s only 7 months old that I can’t even throw away as garbage yet because it’s still active with a new appointment in just a couple of days.

Every day that I get better is another day that I ask myself why. What was it all for?

I suppose I’ll just have to wait and see.

 

 

Drop a Beat (Rap it Up)

By Twinkle VanFleet

Diversity by Twinkle VanFleet

Diversity by Twinkle VanFleet

Trip, slip, low to high,
They could’a killed you,
And you tried to die

Drop a beat,

‘N fuckin’ fly

Trip (Love that pen)
Slip (Fuck it 100 then)
Fly (Fly high over ‘n over again)

Fuck this shit (I’m in)
Just fly
Don’t let it pass by
(Don’t let anything fade by)

Stand out, step up
Dance
Rap it up

Smile (You’ve got that smile)
Laugh (Bring that pain down, awhile)

Break up (Break down)
Put it back together (Slow down)

Choose to live
Choose to die
Shit, just fuck ‘N Fly
It filled you up inside
For that moment you cried to die
(But you ain’t dyin’)

You chose to live (Still flying)
You gave to give (Still riding)
Now you’re chillin’ (Instead of dying) (No one’s dyin’)

You rose up
Yet you was hiding
Now you’re living, again
Instead of dyin’

Stand out, step it up
Dance!
Rap it up

Wrap that shit side up, let it go
Dance
On the reg, on the rise,
During the slip and the slide
Over the side
All alright now,
Deuces high

You know what

Jus’

 

Smile (Love that smile)
Laugh (Pain down, relaxed)

Rap ‘N Wrap it up (Don’t stumble over it. Shit tho’ gotta rise over it)
High fly, word! ai’ght…

Drop another beat, get on with it.

Rap it up.

©2016 Twinkle VanFleet/Golden Rainbow Poetry/All rights reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

 

 

Bracelets; Lockdown; Profound and Letdown

Cross-posted from February 19 at 12:43pm

In the early evening of Valentines Day, February 14, 16, I was placed in handcuffs in front of my residence and transferred to ‪#‎MethodistHospital‬ psychiatric hold where I got to come home the evening of February 16th Initially, I was being transferred to another facility for a 72 hour hold and evaluation after the Dr. said I wasn’t a threat to others, but I was to myself. Upon re evaluation the afternoon of the 16th, the doctor via tele medicine (Robot) allowed me to go home. The bruises on my body (severe) are not self inflicted, but are the consequences of my actions. After being denied 2 types of medications I’ve been on over 10 years (non opioid, anti-depressent/nerve pain and an anticonvulsent, 2 others removed entirely and abruptly January 2015 and reduced from 90 to 30 on Cymbalta at the same time, being continuously delayed, denied, retaking these 2, being denied again, going through the withdrawals over and over and knowing how many of you go through the same or similar, I began to crack. Days prior I filed the appeal, the next day I sought psych help from one of my providers, but was never contacted back. Valentines day started beautifully. My husband set up our patio, and have a vase of flowers for me, coffee and it was peaceful. When I woke that morning, he said “don’t go back” referring to the bedroom. He said” close your eyes” I did. He led me to the patio, the best gift I could have been given. As the early afternoon and sunshine made it’s way in, I was updating hand notes previously taken on a legislative conference to send as minutes. I was listening to music. My emotions began to rise. I was upset that I couldn’t be there for Barby in the loss of her dad, or my mom who’s doing all she can to keep her heart beating, or my dad, or my children, even my sister. I saw that denial letter again as I was highlighting the inaccuracies it contained. I tossed back a 200 ml bottle of vodka. To be specific the $1.99 bottle of Tamiroff (the cheap crap) 40% alcohol by volume. It wasn’t the cause of my actions, but it was the liquid courage to tell it how it was and how it shouldn’t be, however misplaced. I remembered what WC took from me, what I was manipulated into 14 years ago. Something that even possibility, chance or a cure can never bring back and I realized how absolutely stupid I was to listen to my health team at the time. See? I’ve learned and I’ve grown since then and while now I have to tread carefully, I refuse to shut up for me, or for you. And I remember that when my case was initially force closed in 2003, I asked for 1 thing. Just one, and whether my 3 know that or not, I submitted it in writing. I asked for them to apologize to my children.

They’re still waiting

I stood in the street and screamed everything we go through. ‪#‎Chronic‬, ‪#‎IntractabIe‬ ‪#‎Pain‬, ‪#‎CRPS‬, ‪#‎DWC‬ ‪#‎California‬ ‪#‎MTUS‬, denials and delays, I screamed that if you take an opioid, tomorrow you’re defined an addict If you have a drink, guess what? Now you’re an alcoholic. I screamed that records should be maintained accurately and that I was DONE! With irresponsible people fucking up responsible lives. Was my act responsible? Perhaps not, but the cause and reason was.

My tongue was foul.

When I attempted to advocate for myself, speak of compassion and understanding, humanizing people for all, and reveal what I do and that I wasn’t blind to it all, I was considered hallucinating, fabricating, making it up, laughed at, demeaned and ridiculed. Being kind, caring, loving, understanding, respectful, honest, and trustworthy has got me no where. Incline my head to the higher ups as if they’re right, when really I just don’t have the guts to advocate on my own behalf and tell them they’re wrong.

A person (and patient) who’s done everything right has labeled me, defined me, and stigmatized me as someone who’s wrong and who’s done everyone wrong.
They wouldn’t even give me my SCS controller to turn off my stim. Flat increases stimulation. The nurse tried to give me some line about, not right now, she didn’t know what I was talking about, so I tried to tell her. Being dismissed from that made me see even more red, I called her stupid and told her to f off. Then I apologized because even in my upset state, I had the mind to know it really wasn’t her fault, she was just ignorant and uneducated.

I won’t be tolerating inaccuracies in records, healthcare or otherwise. I won’t be tolerating patients not being able to add note to correct the record. I won’t be hiding away under the blankets anymore, while people create their reports to satisfy their own job criteria, yet leave out pertinent information. I’ll be up to make sure you know you better get it right. And that people deserve truth about all else.

I’ll be sharing this story in it’s entirety, there’s so much more than this. My records, PRIUM, tox screen, etc are being sent to the International Pain Foundation. Via iPain someone gets the exclusive. I’ll decide free or fee. Oh and I got on the inside in all of it, now I know what goes on behind those scenes and those doors. I supposedly blew a high alcohol level. But here’s the deal. The bottle is still the same bottle it can’t magically become something else. The amount my body took in wasn’t more than that, I’m 200 pounds, so go figure. I’ve saved that little bottle as a souvenir. Excuses? Not at all. I’m not proud, but nor am I ashamed. My transparency will bring me back up, enough to prove, I haven’t lied, fabricated and I wasn’t on any illicit or illegal drugs which no one believed either.

On the contrary, the truth I’ve told and will tell
Will become me

(This is my #FightSong

… Take back my life song)

If I gave anything that night, I gave 2 things.

1. On command I removed my hands from my mama’s jacket pockets and complied without incident to place my hands behind my back. ‪#‎SacramentoSheriffsDepartment‬. Everyone should do the same in all situations.

2. I’ve given all of you the rest of my life; the one I can’t go back on.
My name is now associated with defiance and lock down.

Nothing else was considered
Sleep disorders, narcoleptic episodes
CSA (my brain doesn’t send the signals to my body to breathe)
Myoclonia
Withdrawal (probably over that by now, but the effects I’m still dealing with)
CRPS (Flare) + and an altered brain from the last 13 months of continuous WC hell.
CRPS (secondary depression, anxiety disorders, PTSD x 2 (diagnosed)

(excluded are internal diagnosis’)

My medication list has been updated each and every time I’m seen by my physicians. Yet, my discharge shows I’m on 11 meds, including Butrans, 5 and 10, a benzo and others. I’m on Lisinopril 1 x a.m, Atorvastatin 1 x p.m, Hydralazine as needed only, BP 180/+, Nuvigil daily, and BuTrans Patch/wk. ‪#‎DignityHealth‬ is linked to all my doctors. The hospital is part of Dignity Health. What’s the point of the EMR, PMP, PDMP or even a computer if it’s not properly used?

Understand why I kept saying “I’m fucking done” I’m done doesn’t equal I’m going to kill myself. I’m over it, doesn’t mean it either. I don’t want to be here doesn’t either. What they all are is some else’s perception and reality I could fart and my son would throw up his hands and say “I’m done!”

Check it out.. My voice will carry, I have the guts to say it, open eyes and touch hearts, contribute to change, maybe not for me, but hopefully for someone else

If I killed myself, I wouldn’t get to say it, now would I?

I’m sure they gave me Cymbalta, Zonegran and Hydralazine in the lockdown. I wasn’t suppose to be given any of those. Only Lisinopril and the Statin. No wonder my head hurts.

I have no regrets
I pray you don’t either.

To be continued…

Sincerely,
Twinkle VanFleet,
Advocacy Director, Healthcare Advisor, Consultant, Speaker, International Pain Foundation (iPain) powerofpain.org/leader-directory

Medtronic Ambassador medtronic.com tamethepain.com
Cureclick Ambassador cureclick.com trialreach.com
SPPAN leader http://sppan.aapainmanage.org
Legislative policy leader
Founder- CRPSA

TwinkleV Feb 23 2016 2

Twinkle V. February 23, 2016

“When no one else believes in you…
.. You better!” ~T

On the 29th of January, I put in for my Cymbalta (30, 1x) and Zonegran (100, 2 x). I went to my grandson’s 10th birthday party yesterday (sick) but I played it like it was something else, I played it off so good and to the point of… shrugs. Yah, slam dunk withdrawal again. Pharmacy kept telling me my doc hadn’t refilled. (A lie) If you didn’t know the truth, say you don’t know. Today I get a letter in the mail from PRIUM. Cymbalta and Zonegran denied. Last January, 13 months ago, I was removed from 2 other medications entirely (one of which was Lidoderm) and reduced from 90 to 30 Cymbalta. I tried. I faked it to make it and I prayed it and played it. but was slipping harder than anyone could ever see, . There’s 1 med left and I know it’s next. Nearly every month I’m delayed, the months I’m not delayed by days, I am by weeks. I’m sure my brain is fried by now. I’m sick all the time from abrupt discontinuation, to trying to re stabilize after getting back on, to slam dunked again. Over and over and over. Those medications aren’t suppose to be slam dunked off of. They aren’t suppose to be abruptly discontinued. They are suppose to be weaned off to prevent seizures and adverse affects that can in some cases include death. Their letter is a lie, it contradicted 12 months ago where it did indicate Cymbalta and Zonegran and now says the CA MTUS doesn’t indicate for the treatment of neuropathic pain. (wrong). It also said because I’ve been treating with a dentist and was ON Norco 5/325 that the Cymbalta and Zonegran didn’t keep me OFF OPIOIDS. A fucking lie. As of the date of that letter. I had 3 dentist appointments. And I suffered and declined med, even tho I took some. I also got permission from my PMD prior to ever getting an RX , filling it or taking it. I have not asked for 1 single extra pill and I didn’t even fill the Rx I had for days later. But know what? It’s a done deal now. TOWER ENERGY GROUP – SCOTT CORNWELL ADJUSTER ARROWPOINT CAPITAL. You might want to get your facts right. You expect us to have ours accurate, yes? Let me see here in 1 year approximately $15,000 a year in medication management times 81 years of age. I’m still only 47. I got your game, you better get mine, too.

This letter said that I failed Lyrica and Neurontin (the reason it now says NO to Zonegran, but that I didn’t fail Carbamazepine or Lamotrigine. You got me stuck on stupid. For real? drugscom says make sure to tell your doctor if you have heart disease, high blood pressure, high cholesterol or triglycerides;
liver or kidney disease; ALL OF THE ABOVE. I get it, compromise one side for the other right? Which really means lower your spending. Sorry idiots, I settled for lifetime medical and didn’t take your money. Go on keep punishing me. Neither of these are NOT indicated for me. I didn’t appeal your last denials (January 2015) and I’m not appealing these either. Oh and by the way, next time you put bull shit in my letters, CA fail first/step therapy REFER TO AB 374 and know that if you’re going to quote taking and failing, you better also note all else that goes with it.

Because I think you failed something else…

Yourselves!

The Travesty of Delays- California Workers’ Compensation SB 863 and AB 1124

https://www.facebook.com/notes/twinkle-vanfleet/the-travesty-of-delays-california-workers-compensation-sb-863-and-ab-1124/10153777634894774

CRPS/RSD and Suicide

https://rsdadvisory.com/2013/05/05/crpsrsd-and-suicide/

January 28 at 11:48am

@CDCgov ‪#‎CDC‬ ‪#‎BSC‬ ‪#‎NCIPC‬ RE: Today’s CDC Public Hearing

I would like to offer that in conversation this last week with Dr. Kolodny and others who advocate against the use of opioid pain care that I attempted to stress the importance of responsibility and education in stating that ”

“So much time proving how bad opioids are when we could have been educating, teaching personal responsibility.” (Twitter only allows so many characters)

A direct reply and quote from Dr. Kolodny

“Education & “teaching personal responsibility” will not make opioids less addictive or more effective.”

Already in today’s call responsibility has been spoken of as well as education several times. He came on and mentioned Guiding physicians. Isn’t guiding educating?

Other therapies can potentially be more harmful, anti depressants, anti seizure medications for the treatment of chronic pain, such as Cymbalta,
Neurontin, Nortriptyline, Amtriptolyne and similar medications also have misuse and abuse potential. When there is misuse, abuse and Overdose is already likely. Surgical intervention is contraindicated in patients with nerve damage, neuropathies, CRPS/RSD. Some of these opioid overdoses were in part due to other medications, mixtures and alcohol, not solely opioid. Integrated and functional restoration programs are important, but few insurances at all, cover them.

Can we try not to stress the decline in white people falling to addiction, when we didn’t seem to be as concerned about blacks, or minorities. many were like, oh well, let them kill themselves, calling them stupid. We’re your kids stupid? I think not. I find it disheartening.
People were people all along. Also personal responsibility is directly related to opioid overdoses. If these children or adults didn’t understand the risk, or what the medication may cause, then education was absolutely necessary by parents, family and spouses first and foremost before the medical community. It becomes a mutual responsibility. Not only the doctor who prescribed it.

If they can’t stop, it’s our responsibility to intervene on their behalf. and attempt to save their lives before it’s too late.

Pain is physical, and pain is emotional. Physical pain seeks quality of life, the emotional pain, those against opioid’s seek comfort for
their loss. Pain doesn’t discriminate.

Physiology also plays a major role in this topic. Lets not sacrifice people for people. Otherwise unintended consequences become intended
consequences. Responsibility in prescribing isn’t a one way street. We seek out the doctor, they don’t seek us out.

~Twinkle V. / Advocacy Director, International Pain Foundation ‪#‎iPain‬

Mid Metatarsal Separation | Lis Franc Separation

https://rsdadvisory.com/2015/12/21/mid-metatarsal-seperation-lis-franc-seperation/

Chronic pain, opioids, addiction and controversy

https://rsdadvisory.com/2016/01/25/chronic-pain-opioids-addiction-and-controversy/

A Call for Action- 2016

A Call for Action 2016 by Twinkle VanFleet

https://rsdadvisory.com/2015/10/14/a-call-for-action-2016/

Overcoming Challenging Obstacles

Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet

https://rsdadvisory.com/2015/11/24/overcoming-challenging-obstacles/

(Several pages and paragraphs not included at this time)

 

Full details of this entire experience soon enough, including photos. —> Media, news, social media, video, radio, and and… and  🙂

 

 

Just One More Step

By Twinkle VanFleet

Twinkle V and Baby Ozra 1997

My baby son and I- West Sacramento- Spring, 1997

I fight, you fight,
We fight together.
You fight, I fight,
We win forever.

“Just one more step, Mama!
Just one more step”
The little voice echoed,
Made it over the doorstep.

Let go, let go!
Neighbors gathered around,
She spread her wings,
The sticks hit the ground.

The little boy beamed,
In the crowd of praise.
Flying solo,
Because of him, she prayed.

I fight, you fight..
For that one more step!
You fought, I fought!
Haven’t stopped yet.

(Hook)
Step up, step down,
Step in, step out,
Step to, step from,
Just one more step Mama!
Just one more step!
Step it up, Step!
Just one more step Mama
Just one more step.

Just one

one

one

Just one more

(Chorus)
I fight, you fight
We fight together
You fight, I fight
We win forever

(Fight! we fightin’ it)

(Fight it)

(Just one more)

(All it takes)

(Just that one)

I fight, you fight..
For that one more step,
You fought, I fought
Haven’t stopped yet.

(Still fighting)

(Steppin’)

(You Steppin’)

(Just one more step, mine)

We haven’t stopped yet

Twinkle VanFleet and son Ozra #NERVEmber 14, 2014

#NERVEmber 14, 2014 Power of Pain Foundation National P.A.I.N Summit

©2015 Twinkle VanFleet/Golden Rainbow Poetry/All rights reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

“I fight, you fight, we fight together” ©Kurtis V.

This quote has been on the internet for over a decade. It originated from my 3 year old son. I carried those words online. They came from the mouth of a babe for his mama (me). On the internet it’s ©Kurtis V. Kurtis V is Kurtis VanFleet a.k.a Kurtis Ozie, Ozie and Ozra.

Thanksgiving – Being Thankful

Image Credit by Ozra

Image Credit by Ozra

I’m thankful that my mom was able to make it here from Georgia over the summer. I’m thankful for our time together. I miss her. I’m thankful for my husband, our 2 daughters, our son and our grandson. I’m thankful for the food we prepared and all ate together.

I’m thankful for family and friendships and the friendships that are family. I’m thankful for people who try when trying is hard enough to achieve. I’m thankful for the acquaintances. I’m thankful for all our differences because if we were all the same there would be nothing to learn from. I’m thankful for both joy and pain.

I’m thankful for the Council and the Enlightened because we understand the meaning of humanity beyond the scope of the physical world. I’m thankful for the experiences in all that they’ve been, and I’m thankful for the memories that accumulate in time.

I’m thankful for today, tomorrow and yesterday,

Because it’s all right now.

Forever.

 

I’m thankful for the love…

… And the light.

Twinkle VanFleet Thanksgiving 2015 3

I’m Thankful, Thanksgiving 2015