Control | Spoken Word

Control by Twinkle VanFleet

Control it
Hold it
(Down)

Rolling the dice (Gamble) (Rambling?)

Ascendancy
Enough of
(Play off?)

Regulate
Not anymore
(Keeping score?)

Oversight
Not really, though
(As above, so below)

california-state-capital-california-international-marathon-december-4-2016

California International Marathon, California State Capital December 4, 2016.

(Everything and nothing)

(Balance)

Ascertain
Rarely exists (Remain?)

Responsibility
Owning it
(Grow)

Authority
Consider this
(Risk)

Influence
Subsist
(With…?!)

Controlled

(Dismiss it)

Throw down
(Profound?)

Broken, hoping
(Coping)
Faded, Jaded

Climb, rhyme
(Time)
Sublime, realign.

©2016 Twinkle VanFleet. All Rights Reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

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Conscientious | Poem

Conscientious
by Twinkle VanFleet

Distance, resistance
Defiance, compliance

Residual, peripheral
Visions, decisions

Subjective, objective
Experiences, differences

Reckless, perspective
Gracious, reflective

Ambition, intuition
Volition, submission

Relevancy, hesitancy,
Prevenancy, indefinitely

Precognition, transition
Recondition, re position.

©2016 Twinkle VanFleet All Rights Reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

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Review – Gohl Program | Part 2

Review – Gohl Program | Part 2

By Twinkle VanFleet

Monica Depriest and Arik Gohl picked me up from my son’s home on October 23rd, 2016. My husband and I had spent the weekend there to take care of our grandson De’Mantai so his mom could enjoy some time away. I had just had a cervical steroid injection. This was my second in 8 weeks. I had only ever had Lumbar Sympathetic Nerve blocks prior and over a dozen of them. I had began with a series of 3 scheduled one week apart in 2006. It had taken 6 years for any treatment other than medication management due to Worker’s Compensation. So that I’m precise rather than confusing, these weren’t denied. Had they been denied I could appeal, instead just stalled and delayed. Since the first 2 series of 3, I’ve had one injection a year since, generally during winter and often times delayed beyond my physician’s control.

We arrived in Loomis California an area outside of Sacramento that evening.

Photos above taken 3 hours apart and the same day as the video below. November 4, 2016.

Admittedly, my body was weak and pain was high, but I hadn’t shared that yet. I tend to go off on my own, and attempt to distract myself when among others. As we arrived, Susie and her son Tommy who has RSD/CRPS, along with her son David had also arrived. Jamie and Spencer arrived later. Jamie Pearson is active in the RSD/CRPS communities, too. Arik’s wife Veronica was amazing and helped us all feel at home. Vero’s hospitality and playful spirit afforded us the ease of being less anxious and at ease among those we didn’t know. Sam Ballentyne licensed therapist and energy healer was also present during the week. Dr. Edward Glaser arrived the next morning. Dr. Glaser is the owner of Sole Supports and an engineer and DPM specializing in Podiatry and Orthotics. Another Podiatrist joined us to observe and all our therapies would begin the morning of October 24th.

16 years. 10 with a permanent Spinal Cord Stimulator (SCS) that hasn’t been turned back on since the morning of the 24th. My only blessing that has been on day in and day out since 2006. The only time it’s ever been off is to either charge a drained battery or to push past 2-3 days to allow my brain to scramble and disguise the pain signals it provided. Our brains realize it’s being tricked. Turning it off let it work better again when turning it back on.



It’s been over a week since returning.  I wasn’t suppose to ever be able to do this, at least without added pain or causing a flare-up. Lets see if I can get to the point of running one day. 2 days ago, I was still told I never will.

So what is Manual Ligament Therapy?

Are you still curious?  ANATOMY PHYSIOLOGY, PATHOPHYSIOLOGY REVIEW Ligaments: A source of musculoskeletal disorders

Review – Gohl Program | Part 1

By Twinkle VanFleet

https://rsdadvisory.com/2016/10/31/review-gohl-program-part-1/


https://gohlprogram.com/

https://gohlprogram.wordpress.com/


I know you can’t wait to learn more and I can’t wait to share it with you. Stay tuned for Review – Gohl Program | Part 3

In the meantime, here’s Jamie’s story on

Dragonflyy’s Journey

To be Continued…

Review | Gohl Program | Part 1

Review – Gohl Program

By Twinkle VanFleet

Approximately 3 weeks ago I was contacted by Barby Ingle, President of the International Pain Foundation with a program to consider. Barby sent me Dr. Edward Glaser’s phone number and a link to what the program entailed.

Those of you who know me would also know that I had to do more research on the Manual Ligament Therapy (MLT) being offered. I had to learn more! I had to try to understand the concept, and how it might work if it could. It wasn’t just the Gohl Program itself that I researched. I also pulled up each name involved. 3 of which were Dr. Glaser, Arik Gohl, and Dr. Forbes. Then I read up on Monica DePriest and her daughter Haley DePriest who had CRPS and who is well today because of the program and the techniques that Mr. Gohl’s therapy provider her. Testimonials.

http://rsds.org/tag/the-gohl-program/

See how my curiosity piqued even more? We’ve all been told that CRPS/RSD is incurable. We’ve learned that it’s also in our blood not just our bodies. I wasn’t as skeptical as some may have been because I had already, several times, researched techniques involving manual trigger point therapies, acupressure, Chinese medicine techniques and similar holistic treatments dating back to the 1800’s. I had already been treated earlier this year with the Bowen Technique.

I had become so let down by western medicine not being able to relieve my own CRPS, or specifically CRPS Type 2/Causalgia in any way other than by Lumbar Sympathetic Nerve Blocks, medications, and traditional physical therapies that only provided minimal relief, if any, that depressions worsened and hope was nowhere to be found. Since December of 2006 the only steady I had was my Medtronic Spinal Cord Stimulator which reduced or disguised enough symptoms that walking wasn’t as painful as it was prior, and pain medications could be reduced by my choice in the permanent placement.

Complex Regional Pain Syndrome: Systemic Complications
CRPS is becoming the great imitator in pain medicine. This article discusses the symptomatology of the disease, including atypical presentations.
By Robert J. Schwartzman, MD

http://www.practicalpainmanagement.com/pain/complex-regional-pain-syndrome-systemic-complications

Complex Regional Pain Syndrome Guidelines 4th Edition 

CRPS-guidlines-4th-ed-2013-PM

All those things I had accomplished over the years, I found little happiness in. I put on the fake it to make it mask and I wore it quite well. Who would have ever thought that I struggled so badly with suicidal ideations that even my spiritual beliefs couldn’t stop me from wanting to bail on this world.

A mid-metatarsal separation of my right foot (also known as a Lis Franc fracture) January of 2001 in an industrial injury began the last 16 years of uncertainty, loss, rejection, abandonment, failure, and secondary diagnosis’. I still had my upper body though. My hands, fingers, and arms would make up the difference. I could still write type and use social media. In 2009, 9 years after, I got a left foot accelerator pedal installed on our van to be able to drive again. Oh I tried! By that time my left leg was too weak also to drive safely.

I had already had degenerative changes in my spine, but pretended that I didn’t. My legs hurt so bad that it diverted any back pain. 3 years ago my arms started doing things I didn’t understand. Beginning with my left and worsening on the right. By the time I had an EMG my left was reduced and my right just continued to worsen. I’ve never had an EMG or nerve conduction studies on the right side. As 2016 approached the pain in my neck, shoulder, chest, upper and mid back, head, face, the sensations of pulling, tugging, ripping, intense pins and needles, paraesthesia, became so unrelenting that I really couldn’t take it anymore. Bending at the waist started a flare each and every time. I still have to work on that. I had lost feeling in my thumb, forefinger and wrist. My right hand had lost strength.

But wait! I still had my left hand and arm. If I ever needed the gift in being ambidextrous, I would really need it now more than ever to be a part of anything, offline or online.

I had unknowingly believed in hope while other’s told me I was in denial and that I had to accept all those things I wouldn’t be and couldn’t do and would never do. At a higher level of consciousness I saw the light ahead, but was conflicted by the darkness of despair.

I’m already so much better than I’ve ever been in 16 years because of MLT.

I celebrated my 48th birthday while at the program. My son drove my husband to Loomis CA to spend an hour or so with me. First time I’ve been away, on my own, anywhere in 15 years.

While I’m still wrapping my own head around it, it’s not as unbelievable as it seems. I promise.

But wait! There’s more..

To be continued…

Review: August and September 2016. California Advocacy Day (NPAF | CCCC) Music Moves Awareness (iPain)

On August 1st and 2nd, I was honored to have been invited to attend the California Advocacy Day, debriefing and meetings with Senators and/or their staff at the California State Capital via the National Patient Advocate Foundation (NPAF) and the California Chronic Care Coalition. Attending as the Advocacy Director of the International Pain Foundation and NPAF patient advocate, I had the privilege of meeting many new people including Liz Helm, and be in the presence of others I’ve crossed paths with at the Capital over the years.

caadvocacyday-aug-2-16-npaf-cccc-ipain-castatecapital

For the last 2 years the International Pain Foundation has been working on a multifaceted project. Music Moves Awareness premiered on September 1, 2016 in Los Angeles, California. Releasing their Debut song Hope is True, iPain moved to inspire everyone with an an upbeat, inspirational dance  tune that can get patients moving simply by it’s enthusiastic beats.

The 12 Steps to Patient Empowerment was developed with each contributing writer not knowing what they were writing about. The most amazing challenge to create without secondary knowledge and the best outcome that might be hoped for. https://powerofpain.org/ipain-living-magazine/

Copies are available for your business, offices, health establishments. Please contact: media@internationalpain.org or contact me directly at: twinkle@internationalpain.org

Meet the iPain Featurettes https://powerofpain.org/ipain-featurettes/ 

Nominated and awarded the Melanie McDowell Awareness and Advocacy Award – Hero of hope 2016. Smiles for miles.

twinkle-vanfleet-receiving-ipain-heroofhope-award-from-barby-ingle-musicmovesawareness-september-1-2016-los-angeles-ca-in-los-angeles-california

https://powerofpain.org/heroes-of-hope/

with-mr-dominick-spatafora-president-neuropathy-action-foundation-naf-musicmovesawareness

This year was an accumulation of heartache and hope.

twinkle-vanfleet-liveongiveon-ipain-recognition

the-morning-after-mma-premiere-party-gayle-twinkle-and-barby-september-2-2016

The morning after Music Moves Awareness debut in Los Angeles California. Gayle M. Taylor-Ford, iPain Board of Directors and author of Step 10 – Pain Management, Twinkle VanFleet, Advocacy Director,  Melanie McDowell Hero of Hope recipient, iPain, and Barby Ingle, President International Pain Foundation and author of Step 1 – Empower! and co author of Step 3 Discussion – with Sara Hobbs. internationalpain.org

I’m thrilled to be the author of Step 2- Responsibility. 12 Steps to Patient Empowerment and feature- Stronger Than Pain in the current addition of iPain Living Magazine.

Godspeed.

#StrongerThanPain

When I wrote Stronger Than Pain the words had already been my mantra a decade plus before. My mind was always consumed with being able to take that one more step. Just one more step. While the song is written in 3rd person and contains specific words that can only apply to me because of the nature of them, the phrase is universal for those who strive to beat pain. It’s for those who have endured despite setbacks, hardships and loss. It’s for those who’ve loved and lost. It’s for all of us. My son Ozra performed my song, my hope, my meaning but with one difference “She” is also each of you ladies whose pain, passion and purpose isn’t just about you, but for everyone. The full version of Stronger Than Pain has not yet been released and there is 2 versions.

 

https://www.facebook.com/KurtisOzra

 

My continuity of care document dated March 22, 2016

Mild recurrent Major Depression

Benign Essential Hypertension

Insomnia

Fatigue

Shortness of breath

Irregular Menstrual Cycle

Menorrhagia

Colon Spasm

Central Sleep Apnea

Memory Deficit

Obstructive Sleep Apnea

Osteoarthritis of Lumbar Spine

Arthritis

Depression

Diverticulosis

Gastritis

Hyperlipidemia

Hypersomnolence

Osteopenia

Prediabetes

Hematochezia

Ovarian Cysts

Reflex Sympathetic Dystrophy

Vitamin D Deficiency

Pain, joint, shoulder

Hepatic Hemangiomas

This is not a complete list, but I wonder if any of it might cause you discomfort, pain, depression or if bleeding from your butt on a regular basis, trying, striving and hurting from each of the others might be pleasant for you. I already know the answer that may be disguised as “suck it up” when if it was you it might be disheartening, depressing and I don’t know, painful? My empathy runs deep for all those who push on to live with any of the above, and those pain related issues I don’t have, yet understand at a level many never will. I haven’t walked every pair of shoes, but I’ve walked enough to know from first hand experiences that my main purpose is to feel you.

I wanted to die, yet I really wanted to live! I wanted the struggle to survive it to be over. As the world turned, I saw the same 2 walls everyday. Not 4, just 2. It was hard to get up and it was hard to leave the house. I gave everything I had and I gave it for nothing expected. I was ridiculed for not supporting other organizations, groups, people when the only thing true in that was that I didn’t have time or ability to give more when I was trying to give a little for everyone. If I gave absolutely everything to others there wouldn’t ever be anything for me. The “me” is the part that was already doing my best, but few saw that or even resonated with the possibility that I wasn’t okay already. People wanted from me, but there wasn’t any mutual giving back, only taking. I wondered why I ever tried in the first place, but I knew the answer to my own question because that’s what I do. It’s what I’ve always done. I had lost all hope. I did my 5 as dirty as those who failed me did. My husband (30 years married in August, 31 years together next month), our 3 of 6 children and our grandson didn’t deserve my actions no more than I deserved being delayed, denied, dismissed and belittled by healthcare providers, groups, and Workers Compensation.

I only saw that their world .. together, would keep turning and that they with each other would make it without me because they would. I can’t handle the 10’s. The real 10’s. Who can?

“When no one else believes in you…

… You better” ~Twinkle V.

I now see groups named Stronger Than Pain, I see so much out there and I’m okay with that. I’ll never tell you how many years back it goes only that the proof is on you before it’s on me because I’m covered. People are always going to take your thing and run with it. All it means is they like it so much they take it or use it. It’s when they take without acknowledgement that it becomes shady.

There’s so much to tell. I’m not ashamed of my actions because that would mean I’m ashamed of those precious suffering souls lost to suicide. I’m not ashamed of them. They are being held in the hands of God. I can promise you that.

If the first or last thing I can leave you with is something to hold onto, believe in, and accomplish..

Be #StrongerThanPain

and “When you think you can’t, maybe you already have”

I pray that I have and that you have also.

I can never go back, but I can go forward understanding why some people are no longer here.

 

~Twinkle V.

 

 

 

Over

In the last week I’ve shared about 6 video’s in the raw. Unedited, me without make up, me with make up, me just going on about the last few months or more, blah blah.

I made it 15 years. I made the last 10 with SCS, medication and functional restoration and the last 4 by medication management, SCS, and home functional restoration enough to help me set goals and achieve them. Sometimes it can really take time to get unstuck from the pain cycles, the why me’s, sulking pity party. I busted my butt, learned, wanted to learn, and aside from a patient, I’m a caregiver too. Hard? It has to be done.

So many times I’ve had to alter my list of the 3 most important tasks needing done in a day. I’d move the least important to the top of the following day’s list. All those little tricks and things I’ve learned over the years that hang out in my toolbox of survival mechanisms.

I knew it was almost over. I just never imagined it would be by the hands and decisions of others/provider’s before giving up of my own. I just didn’t think…  of all the thinking I do that my award also became part of my end. I worked hard for that. Decades for that. Unpaid for that.

Spontaneous? Not really. I messaged my mom to have my Advanced Directive revoked and destroyed. I’ve tried to and I haven’t been able to get them back. It was Valentine’s Day, I called the radio station The new STAR and dedicated a song to my man. I’ll hold back on that song title right now. I took the last walk I ever thought I’d walk. It was long and hard, and I had to sit on people’s lawns or lean against trees or mailboxes and it was really only a little farther than end of our block.

Am I a quitter, a coward? Perception.  A quitter and a coward would have never rolled into those headlights, but let’s be fair, I haven’t quit yet.

I was already in withdrawal, unstable, but woke up to a nice day. It was all good until I re read the first denial letter stating those 2 medications (Cymbalta and Zonegran) weren’t medically necessarily and not supported by the California MTUS (Yes they are). It also claimed that due to the doctors report it was left to interpretation on a couple of matters and one of them was that those 2 medications didn’t reduce my potential for abuse or minimize my current opioid use. Seriously?!!

I appealed and I won. No potential for abuse or misuse and both medically necessary.

Approved on appeal February 16, 2016.  I’m still not on them, nor am I on any pain reliever at all.

I can get through the 7’s, bouncing 8’s and 9’s. I can use my tools to bring those 8/9’s down enough to level myself. I couldn’t handle the 9/10 I couldn’t bring myself out of it. The physical 9/10 that can make you lose your mind. Why? Because it’s in your mind where you’re coping abilities and strategies are.

Already living in your head all day just to manage your 7, see what happens when 10 comes and there isn’t any help. I’ve rarely used 10 in my entire life, I seldom use 9, except to acknowledge it gets there off and on throughout any day for seconds, minutes, hours.

10 though! I drank that bottle, intoxicated, drunk, I could care less about labels because I hit the ground on my stomach and face so hard I passed out. Somnolence, narcoleptic episodes (diagnosed) or alcohol, perhaps a combination of each. Though my husband said he dropped me as I was leaning against him.

I walked out of our gate and stood against our lamp post. Husband came out and told me to go back inside. I wasn’t doing anything but standing there, reflecting, thinking, but then…

He started grabbing me to lead me in and a lady called the Sheriff’s Department on him for abusing me. He wasn’t, but he was in my space and I just wanted to chill. I was sure to tell her that he didn’t hurt me, beat me, abuse me and that I was fine. I was. I think.

Our street, people drive down it like there is no road and a speed limit doesn’t exist.

That was my out! I laid down in the center of the street, spread my arms and my legs as best as I could and I could see headlights flying right for me. Am I mad I was pulled out of the street? A little. Why would I ever think to let a driver be responsible for killing me. Well how about this, slow down and do the speed limit. Everything is a learning experience.

The unbelievable inaccuracies in my medical records are nearly beyond fixing. Medications listed I’m not even taking, and a few for more than a year. I’ve updated again since my release and tonight I peeked at my Patient EMR. They’re all still listed. So the medications go on the record, but they don’t come off? There’s a difference between previously taken medications (inactive) and medications currently taking (active). It say’s I’m on 11 medications including 2 opioids, a benzo, oic med, lidoderm patches, cymbalta, and zonegran and I”M NOT!  Lisinopril, Hydralazine, Atorvastatin and Nuvigil. That is what I’m on. 4 medications. Red flag above 7, did you know that? So yes, I’ve been red flagged and it’s flying the wrong way.

I’m sorry to the Sacramento County Sheriff’s Department, the Metropolitan Fire Department and the EMT and probably ambulance driver too. I didn’t trust you.

When you asked if I was in pain? I told you I wouldn’t tell you even if I was… Because… I wasn’t going to have in my record an opioid pain reliever documented as given to me. Yeah I suffered and I suffered for not being truthful. I’m learning though that truth and honesty is just someone elses made up lies. Unfortunate casualties of the world we live in.

To the Officer that lacked a little faith, I pray I left you with something. Heart! Have a little faith that sometimes not everyone is who the rest of the world made us out to be.

I’m not sorry for the actions that led to my consequences or my responsibility in it. It’s forever now.  I’m glad I screamed all the policy issues going on and made it loud and clear for blocks. I’m sorry for all those who played a part and either bailed or covered their own asses. I’m sorry for all those who think relieving pain leads to misuse, abuse and heroin above the overdoses that are self inflicted one way or the other.

Who ever thought it’d be me? No one!

Courage - Your fear

Goals? Get my lyrics out to those who’ve been interested and play that part of a lifetime. Really though, I’ve already done everything I wanted. From Poster Girl to TV Commercial, being published by my 20’s, being a part of Sacramento history in the news, hard copy, on the news live, iPain Foundation, my own endeavors. All in the background from my space, my cubby.

I’ll either fly off this earth by the grace of God, or by my faith in options. Take that as you will. I’ve had to choose, make choices, decisions, options to save my own life. My own!

Still not what you would simply assume.

I don’t hardly care about much right now because I can’t fix me enough to put in the few hours a month I had been to help others. I’m numb and it’s not the numb I wish it was. It really is easy to rectify wrongs, accidents, mistakes, oversights, correct errors and be responsible for your own actions. It really is easy to do. The only reason someone would choose not to is to hide their own guilt and be unable or against a face to face with you in the presence of a sit down meeting with lead staff for a reconciliation. I feel bad about that and I shouldn’t because I did move to rectify and was denied. I was even denied the 30 days of “emergency care” allotted by law when being dismissed by a provider.

I am grateful for the person who provided LLLT and Bowen Therapy yesterday. Bowen might take a few more times. LLLT I’ve done a few times before. The only “maybe” for months.

Really though, my problem is that I care too much but I think that’s been back handed out of me. None of this is finished, some has only just begun and the rest well…  it is what it is, for now.

Over and…

out.

 

The Body, Mind and Spirit; Humanizing the Soul

https://rsdadvisory.com/2016/02/11/the-body-mind-and-spirit-humanizing-the-soul/

It Really Hurts to Hurt | Live On. Give On.

https://rsdadvisory.com/2016/03/20/it-really-hurts-to-hurt-live-on-give-on/

The Unintended Side Effects of Fighting Prescription Drug Abuse by Twinkle VanFleet

The California Progress Report January 8, 2015

http://www.californiaprogressreport.com/site/unintended-side-effects-fighting-prescription-drug-abuse

Bracelets; Lockdown; Profound and Letdown

https://rsdadvisory.com/2016/02/26/bracelets-lockdown-profound-and-letdown/