Twinkle VanFleet

MLT Update

Posted by

0

It’s been 7 months since I first attended the Gohl Program and approximately 4 months since receiving Manual Ligament Therapy (MLT) the second time. The first time my Complex Regional Pain Syndrome Type 2 was minimized drastically in pain and symptoms. Remission of sorts. I was able to move and stand better. I could bend my toes and come up on my toes. I came home after the 5 days of treatment and utilized the techniques in stretching I had learned from Mr. Arik Gohl. I was able to bend over and touch my toes. I could still come up on my toes with more ease, and I could dance for moments at a time. These weren’t things I could do on the fly at any time of the day, but rather things I could do as I progressed or had an ability to do at any given moment. Or things I was unable to do at any given moment also.

My spinal issues had still been giving me trouble. Pain wasn’t so much in my back other than strain, but in my right arm, hand, fingers. Numbness, tingling, paresthesia. Medical Definition of paresthesia. : a sensation of pricking, tingling, or creeping on the skin having no objective cause and usually associated with injury or irritation of a sensory nerve or nerve root. I wasn’t only experiencing creepy crawlers but intense and moderate to severely painful buzzing that would begin with tightening and pique with an intensity often hard to bear before decreasing. A crippling sensation as my entire arm would lock up for the duration of the symptom. This occurred every few minutes all day and all night long for over a year. I had finally received a cervical injection for C6 and C7 Cervical Radiculopathy. I had the second injection the day before Arik Gohl and Monica Depriest of the Gohl Program picked me up for the healing retreat. I had never met them before.  I had also just learned 2 months prior that my CT results listed lost of disc height, Levoscoliosis, Spondylosis, Osteophytes and other spinal deteriorations. I’ve had bone spurs in my right foot and ankle for many years (2003 MRI), my spine I had no idea. Osteophytes are a bony outgrowth associated with the degeneration of cartilage at joints. I knew I had degenerative disc disease upon an imagining diagnosis in my mid to late 30’s. By January of 2016 I had so much physical pain compiled on me, and without pain related treatment or medications that I failed myself in being able to apply my coping strategies I had learned, wrote about and had shared for others years before. My CT had revealed C4-5-6-7 issues. I’ve known I’ve had Osteo for many years but I didn’t have treatment for it.

There wasn’t anything I could do for myself anymore. In that I mean I couldn’t get pain down enough to even try. I continued to dangle on the edge. I had always been willing to try. I tried so many times over the years for bilateral CRPS.

And then I had MLT.

The therapy literally saved my life.

It brought my pain down so much that I was able to become active in my own healing again. I had no one to rely on in healthcare, nothing to relieve pain, nothing to stop my head from spinning over pain. I lost the ability to survive. I went through motions of living, but I had already died inside.

To this day I haven’t stopped my routines in keeping my flesh, my body from becoming so restricted again. Fascia, all that fibrous tissue, connective tissue, bone pain, crps pain, spinal pain. I’ve kept my own pain levels stable.

Check out all these success stories

Gohl Program TV

Gohl Program Webinar – Chronic Pain

Gohl Program Webinar with Monica Depriest

Twinkle V Case Study Documentation

Twinkle V. – RSD/CRPS, Spinal DJD, Generalized Chronic Pain (Full- before and after treatment sessions)

I can’t even watch those videos because I don’t want to be that person. That’s a lot of pain to see myself in because I know how I really felt arriving there. I don’t even look like that anymore and it only took 7 months. I can’t wait until the 1 year mark which will be on my 49th birthday. I celebrated my 48th while attending the Gohl Program healing retreat in October of 2016. I hope that turning 50 becomes everything (or something) that my 30’s and 40’s should have been.

I know that it’s difficult for some to believe how far I’ve come in such little time. I also had a new injury to my right foot which is a month old today. It did cause a setback in my overall progress yet I retained progress in other areas of my body, mind and spirit during it’s healing time. Even in this injury I didn’t take or have access to any pain medication other than having used the topical Voltaren Gel, Epsom’s soaks and ice. Yes ice! I had not used ice since PT in 2002 for the fairly severe injury in January of 2001 which led to CRPS Type 2/Causalgia. This time began almost immediately desensitizing as not to allow a reversal of progress back to full blown CRPS symptoms. I began wiggling my toes the best that I could again. I’m on my road to recovering that foot once more.

My YouTube videos I’ve chosen intentionally to do raw and real for whatever day it is, moment of the day, pain, progress, humor, sorrow. Same with Facebook videos. There isn’t any reason to disguise myself beyond what I am at that moment.

This year is healing for me. I already dropped out of most advocacy related volunteering and awareness activities toward the end of last year. I’ve remained a Medtronic Patient Ambassador which I’ve been since 2015. I’ve attended training webinars, and I represent and support the Gohl Program.

Aside from these I just want to live, love and remain free right now. Find myself, learn myself, laugh and smile as much as this life can offer. 16 years of nothing but pain, disability, uncertainty, loss, lack of access to care, suffering and suicidal actions changed me.

While living keeps throwing it’s obstacles at me, I’m able to get through them better. Yes there are days movement is harder, of course there are moments when a pain rises for a few. While my Spinal Cord Stimulator leveled my legs out, my upper body had no relief. I lived at a 7 with 8-9’s too often. I fell over the edge at 10.

I haven’t been above a 7 at all. When I have been it was a combination of causing my own acute pain from rebuilding bodily deterioration, or from unrelated belly issues. I’ve held well between 2-5. 5 meaning issues not CRPS and my new injury was decently painful at onset.

Can you imagine living in nothing but physical pain and being able to survive it without medication management for pain? I have. Easy? Not at all. It’s been 15-16 months since I’ve had any. It’s turned out to be so very worth it.

I couldn’t have done this without MLT, Arik Gohl, Dr. Vero Lizarraga, Mr. Warren Gohl, Monica Depriest, Dr. Ed Glaser and the after care tools that I’ve continued to provide myself on a daily basis.

blessing-clipart-god-s-blessings-clipart-1

 

 

Understanding My Truth

Posted by

0

As I approach my truth from an entirely different perspective, I’ve realized how much I overcame from the beginning. The very beginning. I had always known that I had survived inside my mom even after she lost my afterbirth during her 6th month of pregnancy. This is also known as Placental Abruption. I’ve always known that it was suggested I may be born physically and mentally handicap. I later learned what my dad and grandma had been told by the doctor. I’ve always known that I was lucky to have been born into this world at all. There’s an overwhelming sense of peace in learning what I hadn’t understood before in the “could have been or should have been” aspect of me. I always knew I was different from all the kids or adults I had ever known. I’ve always been quite quirky. My mom had always referred to me as perfect. She would say it to me over and over again as I grew and she would tell others that I was as well. It was a standard no one could live up to. In my 20’s I told her to stop saying that to me. I never had any leeway for mistakes and my personality type while A became mixed with other types and traits. My mom and I were extremely close when I was little and my dad was a hard father. I was always held to expectations I never thought I could reach. Both of them couldn’t have raised me any better. I love them for that. I was born seemingly fine, outside of any hard defects and was full term. I was a forceps delivery. I understand now why she told me how perfect I was. I would tell my “different” baby that too. I knew I was born with arthritis and ailments of the neck/spine, but I really didn’t know myself different in that aspect because being born a certain way becomes you. I’ve always had hearing loss, but again because I’ve never been able to hear any other way, I don’t know it to be unusual. My tone of voice as well as the tones I hear are unique. The only time I can tell my hearing is off a little is dependent on frequency and vibrations around me. Sometimes I get louder when sounds are louder. My own voice becomes distorted in my ears by pitch around me. Second grade or about 6 years old is when we learned about my hearing loss. Before that while in the first grade and at another school, I can still vividly remember having to go to speech therapy because I didn’t talk right, or pronounce words correctly. I was a little slow. In that I mean that I was delayed in some learning abilities yet I was also extremely bright at the same time. I was wearing glasses in my second grade photos. I woke up one day in that same year and never needed them again until prescribed for the second time when I was in my early 30’s. I was reading well by the time I was 5 and writing poetry and stories by 7. My ability to walk when I first began was a bit off. I didn’t know that until I listened to my mom tell Dr. Ed Glaser of Sole Supports and the Gohl Program while in Tennessee a few months back. I can still remember my pediatrician always messing with my legs even when my sister didn’t get her legs tested? at our checkups. I’ve always been drained of energy. I’ve always slept too much. My normalcy wasn’t consistent, but neither was my little impairments. Tiny jerks, dozing, sudden lapses, momentary confusion, knowing to go left, or being directed to, and starting to go right. Breathing has always been a problem for me. Not because of any direct lung issues but because of forgetting that I’m suppose to.

This past week I had another Pulmonary Function test. I was asked if I was born premature, I said no. The question was asked in regards to Central Sleep Apnea and the high amount of central events that my last sleep studies revealed from 2012 and 2013. 51 in an hour. The events aren’t recorded as an episode unless one doesn’t breathe for either 6 or 10 seconds at a time, I can’t recall at the moment which for certain. I had 28 Obstructive events in the same hour. I was placed on an Auto Servo Ventilator by RESMED/Philips. The exact model is here.  I quit using my breathing machine some time ago, after my decline in pain management.

I’ve had the aches and pains all my life, but I couldn’t show it. I learned to disassociate myself with anything disabled because I was able. So I held it.

It’s been quite a journey and all I know for certain is that I am product of fetal brain damage, I haven’t been able to breathe since inside my mother and I doze/dream/sleep/awaken different than most.

My mom didn’t do anything wrong in her pregnancy in regards to each reason that can cause CP. There are only 2 that would apply to her as a cause. 1. Multiple pregnancies (carrying more than one baby) and 2. Injury (as in a car accident, etc).

In a recent Facebook post I said

Twinkle VanFleet

“I never believed that disabled children (as you will) should be treated and raised disabled. I believed that they should be nurtured and supported to thrive, loved. I believed that they didn’t need the world on them to judge them. I believed from somewhere deep down inside that “and I posted this to my own son when he was diagnosed finally with a birth defect” I said “Go on as if you never knew you had it”. As I get closer to my truth, I understand why I have those beliefs in me. And I’m okay that.

You’re baby can’t crawl? Don’t put the toy closer, make her/him reach for it. I promise you, most babies will. You’re teenager need a wheelchair, don’t! As a parent you want to ease them, you’ll also cripple them further. You’re kids can’t play sports? Yes they can. It doesn’t matter how slow they are, might be, could be,, it matters that they are playing with everyone else.

I’m not talking about the babies that had to have the wheels in the first place. Had to. Feeding tubes, hard physical/mental. I’m talking about everyone who becomes disabled as a result of not just the illness but the parents who bring them up that way. I was blessed. So blessed that mine didn’t. And I never knew. I didn’t want to know, as it lingered inside me, but you know what? I came up from places no kids will never be. Most babies born like that, or I was, haven’t ever reached my potential. Lauren Wood you were a hard daddy, who loved, but didn’t ever let me be anything other than what you believed me to be, Melody Wood Tresca you are a loving mama, the both of you did right by me. I love you for that.”

I never could see/feel things that most others did. Ethnicity, lifestyles, people, color, differences, etc. I didn’t know if that was natures blessing on me, compassion, or…

One of my friends said to me not long ago, she was telling me about her husband and physical changes, hair. I’ve known them for a long time, I’ve met them in person, and have seen them live. I never realized that he was experiencing what she was describing. I never saw that even though it was right in front of me. To be honest, I had to go pull a recent video to see.

I’ve always loved learning, I can’t get enough. I’ve always loved teaching and passing on what I learn. The last 6 months have been healing on so many levels. I started to want to force people to dislike me because I never really felt accepted right, wrong, or indifferent. There always had to be something I had done wrong even when all I knew was that I hadn’t.

I don’t think it would have made a difference that the world knew my brain is faulty. The problem wasn’t with me it was with humanity, judgement and perception.

Life, love, liberty, lessons,
Faith, trust, intense, impressions,
Hope, laughter, healing, rain,
Cleansing, blessings, clearing pain.
©2017 Twinkle VanFleet

“The placenta nourishes a growing fetus. If it is compromised, such as in placental abruption, the unborn baby may be deprived of oxygen. This can cause stillbirths, premature births, or future growth problems. Oxygen deprivation can also cause brain damage, including cerebral palsy.

When a baby’s brain is deprived of oxygen during pregnancy or birth, parts of the brain may begin to die. This sort of brain damage can result in developmental problems, motor skill issues, and other symptoms of cerebral palsy later in life.” http://cpfamilynetwork.org/placental-abruption/

To be continued

PDF- https://www.gstatic.com/healthricherkp/pdf/cerebral_palsy.pdf

Cerebral Palsy Guide https://www.cerebralpalsyguide.com/cerebral-palsy/

What is Cerebral Palsy https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research

Definition of Cerebral Palsy http://www.cerebralpalsy.org/about-cerebral-palsy/definition

Fetal Asphyxia https://www.ncbi.nlm.nih.gov/pubmed/9683410

Review – Gohl Program | Part 4

Posted by

0

Review – Gohl Program | Part 4

believe

It’s not yet been 6 months since first attending the Gohl Program healing retreat. Let me begin by saying that your journey is yours in pain; my journey is now mine from pain. Nearly all of us share, raise awareness, learn, teach and offer support to others. Many belong to or own groups, websites, blogs, are a not for profit or are a part of nonprofit organizations or businesses doing the same. My main goal is sharing my progress and healing after receiving Manual Ligament Therapy to proffer hope where hope had no longer existed for me. To share this option for chronic pain relief, testimonials, webinars, case studies, until people believe impossibles are possible. While everything I’m doing now may not be directly related to the Gohl Program it is because of it. An example would be the use of fresh herbs for their medicinal properties instead of the use of Over the Counter medications. The Gohl Program didn’t tell me to go home and do these things. I chose to continue the holistic course I had already begun as part of my overall healing experience.

On February 26, I shared to Facebook:

February 26 •
#MLT #Fact = In what became 4 months (2 days ago) since my first treatment session at the Gohl Program Arik Gohl, I’ve been able to:
1. Move my toes
2. Bend over to touch my toes
3. Raise my legs
4. Walk without assistance, or needing to stop a few steps later.
5. Walk to the store (A couple of blocks, each way)
6. Dance
7. Sleep better
8. Re quit Gabapentin and Cymbalta
9. Squat
10. Adjust my spine to better alignment when sitting, laying down and standing.
11. My Spinal Cord Stimulator has been off since hours before my first session on October 24, 2016.
12. Did I mention dance?
13. Regain strength in my upper right extremities. Raise my arm, move my shoulder.
14. Since my last treatment in January of 2017, I’ve been able to regain better use of my right hand and fingers.
15. Belly flares (Diverticulitis, Gastritis, Kidney, Liver, etc, general inflammation and associated pain) has been reduced in the duration of time and discomfort associated with those diagnosis’ and symptoms prior to treatments.
16. I skated with my Grandson for the first time in his 11 years of life on February 18, 2017.
17. I’m not prescribed opioid pain relievers (nor have I had any since February of 2016)
18. Mr. Arik Gohl, Mr. Warren Gohl, Dr. Edward Glaser, Dr. Veronica Lizarraga, Ms. Monica Depriest, the Gohl Program and MLT literally saved my life.
19. I’m living 16 years later without pain being a constant physical and emotional reminder of what I couldn’t do, shouldn’t do or would never do.
20. I’ll never quit again.
~Twinkle V.

On March 4th:

March 4 at 12:57am •
After a fairly intense moment with the dad Mr. Warren Gohl, Arik Gohl’s father, who I’ve been blessed by, I left my emotional garbage in a rock filled parking lot in Tennessee. I left the beginning, I left iPain, I left my Facebook deactivation and the reasons why, I left advocacy and awareness for which it was, I left the medical mistakes, I left the pain I caused my children, I left thinking I wasn’t a good wife anymore, I left the hurt of believing I would never be anything more than I was and that I wouldn’t go any farther than I had. I left the gossip and the whispers. I left caring too much. I left being a pain person. I left the end of it all and a new beginning was born. Because of that my path was paved in a new direction, and if I worked for it, I could be free of all that it had been and find peace in a forever where pain wasn’t my captor anymore, but instead a reminder that if I hadn’t endured all that I had physically and mentally, I’d never be right here, right now.
There’s no other place I’d rather be.
Can’t never could do anything anyway.

On April 3rd:
April 3 at 7:50pm •
There has only been 4 years scattered among the last 17 that I haven’t had major surgery, procedures, or blocks. There’s been several times over the last few years that I was cut cold turkey off of medications and went through hard withdrawal. No opioid withdrawal, just an increase in pain as a result. I’ve had other major surgeries prior to #CRPS, one of which kept me out of work for 3 months. I never filed for State Disability. I went back to work as soon as I was cleared to. After #CRPS I still fought by butt off to beat it enough to manage and the secondaries began and my entire being was overcome with all of it. Finally dropping out of the healthcare system was the best thing I ever did. No one asked me to, no one told me to. The stress itself of waiting on authorizations, scheduling, how to get to an appointment, who to rely on, all interfered with more than they helped my ability to cope. And I know many of you go through the same thing. We dwell on the unknown and that in turn raises physical pain. Physical pain then instigates stress and emotions and you can’t ever get out of it. Until you understand that you can.
No one wants to believe in anything other than surgeries that rarely heal us. Especially if we can’t do the followup care for ourselves for them to be successful. Few want to believe in anything other than pain medications and I know if it’s all you have, it’s all you have to survive and I understand that more than you may realize. People lose themselves to pain. You all have one way or the other. Few are taught basic techniques for self care, and healing,
I talk about stretching and people freak out. I talk about the decrease in my own pain and people think I couldn’t have ever been as they are. I talk about progress, everyone wants to know how, but then can’t believe in it. Not even as an option to share.
If you can suspend your disbelief long enough you might get at least part of it in the overall meaning of what we’re all capable of doing for ourselves or with the assistance of a caregiver until we can. When you have an open mind, you learn. Closed minds leave us right where we are in any circumstance.
I was heading for reconstructive spinal surgery. I was already scheduled for banding ligation, and I cancelled my last cervical spine injection.
I chose to go off the last 2 medications I had only restarted the month prior to receiving #MLT. The program didn’t ask me to, or imply that I had to. I quit Gabapentin so that I could feel any changes without something overshadowing it.
I quit Cymbalta so that I could just be me.
How could I do all this?
GohlProgram.com
Since the first post containing the 20 points, I’ve also began using a stationary bike, I worked myself up from light stretching to being able to do another exercise/stretch to strengthen my neck, shoulders, back, stomach, legs, arms and hands. These stretches and techniques were directly taught to me by Mr. Arik Gohl and are not what is taught or expected in traditional physical therapy. Traditional PT is often unrealistic with exercise or stretching prescribed that is beyond an expectation to succeed. Rather, most patients are set up to fail and because of this many never recover.

On the query “Do tendons feel pain”
Answer: Most people feel a general achiness, stiffness, and pain. Symptoms can occur throughout the body. Any soft tissue (muscles, tendons, and ligaments) may be affected.

There are over 900 ligaments in the human body and more than 100 muscles, tendons and ligaments in the foot alone.

If you can imagine then that when our feet are properly aligned and supported solesupports.com and when our feet and body is relieved with Manual Ligament Therapy that chronic pain conditions can be eased, cured, or that remission really is possible even in the most complicated cases.

I said cure didn’t I? Cure the word that’s become taboo when it comes to the supposedly incurable. Trust me, if someone threw around the word cure to me, I probably wouldn’t have believed, but I would have looked into it. If I knew someone that went from 0 to living I’d be watching and listening intently on their progress, setbacks, or healing.

I did that with Ketamine. I seen results and so I wanted to for myself. I just never had that opportunity. Now I’m glad that I didn’t. 1. I would have had another chemical in my body. 2. I may have come to rely on it. 3. Its hard having relief of any kind and having it either taken away or become unavailable again. With the Gohl Program there isn’t any taking away because it’s up to you whether you do or don’t after the treatments.

I imagine that I’m in a time where healthcare as we know it now doesn’t exist. I imagine what I would do for myself to live through colds; flu’s, promote healing in injuries, acute or chronic pain and I remember that it wasn’t even so long ago that my own pediatrician who was also my children’s pediatrician always suggested Ginger ale when we were sick. Something I rarely or if at all hear of anymore. Ginger, or ginger ale, relieves colds, flu’s and pain. I use ginger often for its anti inflammatory effects.

I imagine that if I wanted to live through the worse I’d have to find a way by being responsible for myself and my own well being whether it be living off the land, using home remedies, and moving myself even when it hurt that I could survive.

I’ve found that way through the Gohl Program. I hope I can show you the way, too.
Part 1 – https://rsdadvisory.com/2016/10/31/review-gohl-program-part-1/
Part 2 – https://rsdadvisory.com/2016/11/06/review-gohl-program-part-2/
Part 3 – https://rsdadvisory.com/2016/11/08/review-gohl-program-part-3/

The Rink

Posted by

0

It’s been nearly 4 months since I first started the Gohl Program and underwent Manual Ligament Therapy (MLT) developed by Arik Gohl. You can check out my Case Study Documentation or my uncut documented sessions at Gohl Program TV on YouTube.

I had never skated with my 11 year old grandson. My own son who’ll turn 20 next month has no recollection of ever experiencing anything like that with me. I did take him when he was 2 and his sisters were pre teens, but only I have that memory for him. Ozra was 3 when the injury happened that led to my CRPS. Our girls were 11 and 12.

Night before last we went to pick up our grandson and we went skating. Next time it will be both he and Ozra with our girls, and a few others.

We shared on Facebook Live where I did fall in front of everyone, and I did get back up to try again. Here we are, hand in hand, (Pink blouse up against rail).

I never made it around the rink, but I made it onto the rink several times. I watched as people did all the things I once could also. Speed skate, skate backwards, dance skate. I use to love playing red light green light.

I might not be able to do any of those again, but one day, I will make it around the rink at least once.

No inline skating for me, not now, sometimes you have to start with 4 wheels.

Without MLT this would have never been possible.

 

 

 

 

Control | Spoken Word

Posted by

0

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/

wwgrctwvf_rsdadvisory

Facebook Deactivation | RSD(S)-CRPS Advisory Info & Support Group

Posted by

2

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. 

twinkle_vanfleet_carousel2

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

Conscientious | Poem

Posted by

0

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/

wwgrctwvf_rsdadvisory

Review | Gohl Program | Part 1

Posted by

8

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.

Me and my husband Erik
Me and our son Ozra

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…

#StrongerThanPain

Posted by

2

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.

 

 

 

Drop a Beat (Rap it Up)

Posted by

0

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/