Advocacy

As I laid snuggled in bed last night I considered again any future in CRPS Advocacy. I’ve previously mentioned that I’ve already stepped back from much of this.  I’m currently not involved in any. I’m partnered with organizations and alliances which may include but aren’t solely related to.

Bay Area, California Taken by Kurtis Ozie (Ozra) VanFleet Sept 24, 2015

Photo credit: Kurtis (Ozra) VanFleet Sept 24, 2015. Bay Area, CA. Stronger Than Pain

 

I re considered momentarily if I should have anything to do with being a voice for it again. Of course this tugged my heart strings as I contemplated. I need to be sure before I take on any further commitments. Since many of my views and beliefs are no longer what they once were I’m really not what you want and therefore I shouldn’t be involved.

I could feel my head move slightly to the left and then to the right. I was shaking my head no.

While I’ll go on to speak about or share things that have impacted me and others in various capacities of pain, illness and disability, I’ll leave CRPS Advocacy to those of you who inspire to do so.

As able, I’ll share you’re endeavors. I’ll try to read and share your blogs, awareness, events, and accomplishments.

This is really all I can do and I hope that it’s enough.

 

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Advocacy and Awareness: CRPS

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Image Source: Sad Face Behind Mask by Mudabbirali

I had always maintained a level of balance when raising awareness for Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia. My role was to provide accuracy over inaccuracies. Identifying, evaluating and sharing diagnostic criteria for the diagnosis of CRPS. In addition was the difference between CRPS and CPS (Chronic Pain Syndrome) Chronic Pain Syndrome is a compilation of chronic pain complaints which can include RSD or Causalgia, yet is NOT a CRPS itself.

Complex regional pain syndrome occurs in two types, with similar signs and symptoms, but different causes: Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb.

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury.

Approximately 90 percent of people with Complex Regional Pain Syndrome have Type 1. 

The McGill Pain Questionnaire 

McGill Short Form Pain Questionnaire

McGill Pain Questionnaire (MPQ)

The McGill Pain Index 

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing.
This index is subjective. Subjective means that your pain and symptoms are based solely on what you define them to be. It contains no objective findings to establish any certainty whatsoever.
This index leads you all to believe you have the worse pain disease known to man. Above Cancer. The index describes “Causalgia” which the majority of the people with this syndrome do not have.
Upon reading this many of you will suddenly decide that you have type 2. If you didn’t have type 2 there would be less reason to be incurable and in so much pain.
Do you know how many people over the years who have been diagnosed with RSD suddenly changed their own diagnosis to Causalgia upon learning the difference? Too many.
This is why the research and documented statistics are flawed. This is why the healthcare system fails to help us and instead classifies many of you with Chronic Pain Syndrome or Somatic Symptom Disorder.
According to the respected Dr. Philip Getson “Current estimates suggest that there are between two and ten million patients with this disorder worldwide. It is my personal belief that if you subscribe to the theory that fibromyalgia is in fact not a distinct and separate entity but rather a sub-sect of RSD (as I do), that number can be as much as five times higher.” http://www.drgetson.com/reflex-sympathetic-dystrophy.html
This is because RSD and Fibromyalgia share similar subjective results (trigger points/pressure points) and complaints in addition to some objective shared findings. Overactive nerves instigated by stress. The Fight or flight response.
I can assure you that Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia can be drastically relieved and has the potential to be curable without drugs, sympathetic blocks, modalities or implantable devices.
I can no longer ascribe to the belief that CRPS is without possibility in healing. I’ll not tell people they’ll never get better, and I won’t be sharing the misinformation that advocacy groups expect of me. What I’ll share are the facts that surround this misunderstood syndrome and how we never have to end up disabled, sick, emotional and grieving over something that has a chance early on for an immediate remission, without years of failed treatments and medications and doesn’t ever have to lead to an end of no return.
I think I’ve proven that.
~Twinkle VanFleet, GohlProgram.com 

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

By December 2nd my Facebook was deactivated. Even though I had considered it over the years, I was worried about losing my group and pages as a result, especially my RSD(S)-CRPS Advisory Info & Support Group created 13 years ago at another location. It was a spontaneous decision and one I have not regretted once.

This Group now belongs to Trudy Thomas featured Blog Talk Radio Host of The Body, Mind and Spirit Network and honorary leader of my group since it was moved to Facebook. If I choose to return it will be both Trudy’s and mine. Craig Fletcher remains an Admin/Leader and Erik and Kurtis VanFleet remain admins for the purpose of recovery. So that there are no misunderstandings Trudy is now me for the Group. Her decisions are as the current owner of the group. I have no doubts in her ability, choices, or decisions. I trust her to fulfill my vision, passion and purpose for which it was founded for.

Trudy is not available for drama, or he say’s she say’s. She would be available as able, as I was, in the event of an emergency situation such as specific breaking of the rules that were established long ago, or those being malicious or instigating toward one another. I may be involved from the background with updates from Trudy though I will not require them.

I’ll always want to know if all is okay. That’s because I care a bit too much and to my own detriment. Being an empath/sensitive only causes me to feel your pain, feelings, thoughts, dislikes, and emotions I rather not feel of you because then I’m over flowing with mine and yours, too.

Trudy is learning to live again and without her husband Mel of over 40 years. It’s only been a month since she lost him to inoperable cancer which had only been discovered 4 months before.

About 2 months ago I had posted on Facebook about Trudy, her situation, about someone we all knew (most of us) and it was a long post but I hadn’t shared who she was. This post was taken so far out of context from a few people believing I was talking about myself that I was dumbfounded. This wasn’t the only post misunderstood. I’ve posted random comments about family, life. I’ve shared meme’s, music, lyrics, poetry that of other’s and some of my own. I’ve shared lines or stanza’s in pieces and parts. Even those are taken adverse. I’m well aware that once it’s on the internet it’s always on the internet. I’m aware that if we make a post that we can’t expect others to comment if we put ourselves out there. Of course. I would never hop onto someone else’s page to scold them or entice an argument. I have however replied on my own page when someone bounces onto mine.

My point is that not everything is internet or online related, and sometimes things are. In this post it was online related, yet taken as something else, when an offline related post is assumed to be about online people. The perception is so often opposite of the intent. Left to interpretation by tone of type. The assumed tone of voice or mannerisms in the typed form of communication.

Please be mindful of Trudy’s loss. My heart continues to break for her.

Facebook is nothing but a trigger for me in my own healing and progress.

The Edge. There is no honest way to explain it because the only people who really know where it is are the ones who have gone over.
~Hunter S. Thompson

I’m still doing well since completing the Gohl Program on the 28th of October and will continue to provide progress updates on Manual Ligament Therapy (MLT) as able.

I’m still on Twitter @rsdcrpsfire and my other social media accounts are in tact at this time. I’m still an avid researcher and as hungry to learn as I’ve ever been. I’m also looking for work to attempt to provide for my husband and I.

Since resigning from iPain I have not joined any other organization, nor will I. I’ll share and support as I always had.

I made it to the California State Capital to support Mr. Nate Torgerson, Chief Engineer, Medtronic Stimulation Pain Therapies on December 4th at the California International Marathon where I was right there near the finish line to support him as he crossed it.

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Medtronic Chief Engineer, Pain Stimulation Therapies Nate Torgerson crosses the finish line at the California International Marathon in Sacramento. Photo credit: Twinkle VanFleet

I had the honor and privilege of meeting him later that evening for dinner.

Great conversation, sharing, learning, and food at Zocalo’s in downtown Sacramento. He asked me about my experience winning the Live On Give On Bakken award, and I told him what a surprise it had been to learn that I had and the honor it was to receive it from the hands of Dr. Earl Bakken himself.  Dr. Bakken is the co founder of Medtronic. Forever grateful to be chosen as 1 of 12 recognized internationally and being 1 of 2 from the United States. Twinkle VanFleet, Sacramento California. 

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Twinkle VanFleet, Sacramento, CA, LiveOnGiveOn.org recipient. Original Press Release Photo.

Another honor was being contacted by Mr. Pat Anson of the Pain News Network to consider offering comment on an upcoming article. I accepted.

Opioid Pain Meds Rarely Involved in Suicide Attempts
December 05, 2016 By Pat Anson, Editor


I’ll keep sharing my story, what happened, how it happened, when it happened and anything else I can to support those lost by pain related suicide. As well as those survivors who can never go back to the moment before they attempted to take their own lives. I don’t get to go back and pray for an option, help, that wasn’t there but I can go forward understanding why they did it, what the breaking point was, how severe physical pain was to go against all they believed in just to be free from pain and suffering.

My casting calls are still booming with possibilities since I updated a couple of weeks ago. For now, I’m deciding, and brushing up on the various characters I can play.

Offline, I have an amazing reputation, respected in advocacy, legislation, held in wonderful regard by those that matter, including those in authority, business, politics, and healthcare even when in disagreement over a bill, debate or topic. Online, unless we already know each other, or have met in person it will rarely be the same because what you see isn’t always what you get and what you get isn’t what you’ve already given.

It’s all a stage.

Be good to one another.

~Twinkle VanFleet

#StrongerThanPain

NERVEmber – iPain Foundation

NERVEmber ™ brings awareness to the 150 plus conditions that have nerve pain as a symptom.The International Pain Foundation host the OFFICIAL NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber. Did you know the color orange is the international color for chronic pain awareness. In over 150 conditions that do have nerve pain as a symptom, RSD is one of the most painful.  Yet this condition is misunderstood, mistreated and often misdiagnosed.#NERVEmber is International Nerve Pain Awareness Month (including RSD, CRPS, Diabetes, Neuropathy and more). Each day during the month of NERVEmber the iPain (@powerofpain) will present an awareness task that we can all perform!This year we are also giving away prizes available for everyone who registers to participate and uses the hashtags, complete tasks, host or attend an event. The more you participate in OFFICIAL #NERVEmber events, the more chances you have to win! Check out all events going on in NERVEmber Event Calendar.You can bring awareness to conditions like #RSD #CRPS #Diabetes by posting everyday in #NERVEmber with @powerofpain #PaintTheWorldOrange. Using these tags will earn you chances to win some great prizes!During November, the International Pain Foundation’s #NERVEmber project is also supporting the #CRPSdayofaction, #RSDdayofaction, @theproject3x5’s #OrangeInitiative, A voice for the people with CRPS – CRPS RSD Australian Network, United in the Fight for CRPS Awareness, #ColorTheWorldOrange, #ColourTheWorldOrange.Want to be a #iPain Super Advocate for NERVEmber and have extra chances to win! … Register HERE Thank you for visiting NERVEmber.org and don’t forget to visit NERVEmber™ on FACEBOOK.

See original Source for links.

Source: NERVEmber – iPain Foundation

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.

 

 

Review – Gohl Program | Part 3

Review – Gohl Program | Part 3

By Twinkle VanFleet

its-time-to-heal-by-kori-leigh

It’s time to heal by Kori Leigh

It’s important to understand that MLT isn’t a magic pill we get to swallow and become miraculously cured by. It’s the beginning of curing ourselves. Cure in medicine is defined as:

cure (kyur)
n.

  1. Restoration of health; recovery from disease.
  2. A method or course of treatment used to restore health.
  3. An agent that restores health; a remedy.
  4. cured cur·ing cures
  5. To restore a person to health.
  6. To effect a recovery from a disease or disorder.

Remission in Medicine is defined as:

remission re·mis·sion (rĭ-mĭsh’ən)
n.

  1. Abatement or subsiding of the symptoms of a disease.
  2. The period during which the symptoms of a disease abate or subside.

It’s not really difficult to understand that a cure is just as possible as remission can be. How? The answer is simply by restoring a person to health.

“Manual Ligament Therapy (MLT) is a new and original technique created by Arik Gohl. … We have learned that ligaments are a significant source of pain, especially in cases of chronic pain. Until injured ligaments can heal from their underlying dysfunction, muscles will remain in a tense and guarded state.”

I know what you’re thinking. If you have Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome that you’ll forever live a life of pain with potential spreading from the original site of injury to the rest of your body.

It can be true, but it doesn’t have to be. All of those symptoms, burning, allodynia (pain resulting from a stimulus (as a light touch of the skin) which would not normally provoke pain; also :  a condition marked by allodynia) hyperalgesia (increased sensitivity to pain or enhanced intensity of pain sensation), hyperesthesia (unusual or pathological sensitivity of the skin or of a particular sense)

I really don’t have either of the above anymore. My body is still learning not to feel sensations of pain while also recognizing those areas that aren’t hurting.  If anything its just hyperesthesia I’m working through. Example, sock me and I’ll feel that sensation long after the actual event. Like a repetitive action.

Keep in mind after years of pain, signals misfiring, injuries taking on abnormal healing paths, other areas of my body becoming effected beyond the site of the original injury that I have a main role to play in reversing these abnormalities. I have to reset my perception to pain by reversing all that my body knows, felt, and has learned as a result.

5 days of Manual Ligament Therapy has gotten me to this point. The custom orthotics is correcting every abnormal step I’ve taken since January of 2001.

You might be thinking manual? Yes, you’ll have to be touched, and you’ll have to move areas you’ve stopped using due to RSD/CRPS, chronic pain. This isn’t traditional physical therapy, you’ll actually feel restricted tissue, muscles, and a myofascial release of those symptoms and connective fibrous tissue eased.

What about burning which is the hallmark symptom of RSD? It’s eased the same way.

Currently MLT isn’t a covered therapy under insurance. Like many other integrative, complimentary, or holistic practices, including acupuncture, acupressure and similar therapies which may be beneficial we’re still legislatively working on these options for you.

MLT is non-invasive.

Another healing retreat will be held at the Sheraton Los Angeles International Airport beginning Monday, November 28, 2016. http://www.sheratonlax.com/

The cost for the treatment is $2,500 and doesn’t include travel or hotel. I know it sounds like a lot, but it’s not compared to a single injection or invasive procedure billed to insurance or accumulative and yearly co-pays.  For more information please contact Monica Depriest: Monica@gohlprogram.com

I’ll be present also to follow-up on my own therapy.

So with that I look forward to meeting you and hope that you’ll give yourself the opportunity to feel better. Sometimes it takes pain to get rid of it. It’s a process of not only healing but believing in yourselves enough to understand that’s it’s possible rather than impossible and pain being the rest of your lives.

To be continued…


Review – Gohl Program 

By Twinkle VanFleet

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/

 

 

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…