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.

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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/

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This year was an accumulation of heartache and hope.

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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.

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Power of Pain Foundation- ADF and Access to Care

 

AZ State Capitol BuildingADF

Power of Pain Foundation recognizes that Abuse Deterrent Formulations are only a step forward
toward drug diversion. We know this isn’t the final answer. It allows an option for patients to
continue to be treated with opioid analgesics and removes many of the barriers involved in non abuse
deterrent medication.

 

POPF Pain Community Needs Assessment Survey

We are not focusing on any one treatment option, we are improving upon the patient/provider
relationship.

The purpose of our survey was to determine who is having trouble getting access to quality care.
who is being dismissed, who is being cared for by a primary physician, who is being sent to pain
management and who is having difficulty receiving ongoing pain care.

We are aware of many individuals who are not receiving proper medication management or treatment
and others who had been receiving care that are now facing obstacles.

Our goal is continued access to care. Our goal is patient empowerment.

Recent Articles

INEFFECTIVE TREATMENT ASSOCIATED WITH THE CHRONIFICATION OF PAIN by Barby Ingle
http://www.lynnwebstermd.com/ineffective-treatment-associated-with-the-chronification-of-pain/

BARBY INGLE ON CHRONIC PAIN AND OPIOIDS by Barby Ingle
http://www.lynnwebstermd.com/guest-post-barby-ingle-on-chronic-pain-and-opioids/

The Unintended Side Effects of Fighting Prescription Drug Abuse by Twinkle VanFleet
http://www.californiaprogressreport.com/site/unintended-side-effects-fighting-prescription-drug-abuseTwinkleV_SB1258

 

 

 

 

 

 

Barby Ingle: Tamper-proof pain drugs deserve support

http://www.desertsun.com/story/opinion/contributors/2015/02/28/ingle-pain-medication-%20tech/24144627/
With the Power of Pain Foundation as a sponsor of the new bill AB 623 on Abuse Deterrent
Formulations, the above article  Op-Ed by our President has special significance being published 2/28/2015.
#RareDiseaseDay http://www.rarediseaseday.org/

Our President also wrote articles for for WA, NV, AZ, and CA.
She wrote letters to legislators in MD, MO, UT, CO, AZ.
BarbyIngle-FillYourPrescriptionOfHope
We are committed to you!

 

Power of Pain Foundation Advocacy Committee
Twinkle VanFleet, Board Member, Advocacy Chariwoman

Stepping Up and Stepping Out with POPF (Power of Pain Foundation)

So many don’t realize what isolation is until they find worth in something or worth finds you. 14 years ago the injury, a right foot mid metatarsal separation changed my life.  In my story Emotional Seperation- Fire ‘N Flight Where Pain and Depression Collide by Twinkle (EKV) VanFleet you will find all the truth you need to and you will also find my story seemingly ends in 2006. My story never ended. 

As the years moved on, I learned to adapt. I wasn’t even on Facebook until 2009. I was however on Myspace where I met many RSD/CRPS leaders, organizations, shared posts, wrote posts to share. I have really never been one to hide my life. What you see is what you get as long as you are able to perceive it properly and fairly. The innocent looking, pretty, slim princess could so easily be the one selling the drugs.. and me? The pierced girl, who wears bracelets, anklets and just kicks it whether in leisure or professionally could be taken as the mobster.  I mentioned recently in a group post, the group that I founded over a decade ago that I am finally glad it’s me. That I am one to be judged, wrongly. For it might be me to make a difference in the world one day on the matter of prejudiced and profiling.  In a sense, I truly can’t wait!

I have done so much in the background over the years. The articles I had written, support given and offered, endless hours spent on so many that I let even my own family become second to all else.  I fell and I came back up. No one knew it. How could they? I didn’t tell anything.

Approximately a year or more ago, I posted a message that said “I need to find my happy” What I meant was that all my posts were bland, to the point, taken as serious. No online hints. No lol’s, no lmao’s, no ~laughs. Just the post.  Someone replied with I’m so happy you have. I was happy, too.

I started sharing posts of laughter, some not so accepted by a few. Some contained curse words, the graphic posts to me were funny and to so many others.. they laughed and laughed. Made their day! To a few they were found offensive, disgusting, wrong.

Suddenly where does that leave me?

It wasn’t until I became a member of the Power of Pain Foundation that I was able to have enough conviction and belief in myself to leave my home again.  Weight gain, swelling, vocabulary that in person is stuttered, lapse of memory, the inability to keep on my feet or even feel good about the life that had become me.

The Power of Pain Foundation showed me that I am so much more that the disabilities and inabilities that I sometimes put myself down for.

They have encouraged me to stay me! In all that I am and all that I might become.  They have accepted my diversities which so many of you will never, just never understand and they let me embrace it and move forward with all of it.

I get my work done and I fall short from time to time. What I have never had is someone putting me down, but instead encouraging me and thanking me for what I can do, not scolding me for what I am unable to do.

Simply put, work is work. Volunteer or not. Sometimes we all need a nudge just like any other job..  before you say but wait! It’s volunteer.. I can only imagine how many other volunteer positions I might have had that I would have been booted out from already. Why? Because I couldn’t get out of bed that day!

My journey with Power of Pain has afforded me the opportunity and want to get my butt out of bed or force my legs to go because it gave me incentive. We lose so much with CRPS/RSD. We need to know we still have some bit of worth. And you do! We all do. It doesn’t matter how small. It doesn’t even matter if you think there’s nothing left.. you have worth, you always will. Please remember that!

I’ve been POPF’s California Ambassador for a couple of years now. I have organized and attended one major event. I have done guest appearances on the Living with HOPE Radio Show with Host Trudy Thomas, I have Co Hosted a Bit, my grandson was featured in an article with Barby Ingle, I wrote the Forward for Barby Ingle Taylor and Ken Taylor”s book Real Love and Good Sex for Pain Patients and Their Partners 

I can’t even remember what else I might have done or achieved.

I thought that I wasn’t doing enough for POPF that I had let them down. These were my thoughts. I thought, my lack of mobility was holding me back from being able to interact with the local community and at large, the entire California Community. I thought that my immediate family issues were setting me aside because I was taking care of them. It wasn’t so.

And then..

I was honored with the promotion to Executive Board Member.

My goal now is to continue on building my POPF California Team. Throughout all of California.

I continue to search at random (with a few helpful hints) for the Power of Pain Foundation’s Patient Fundraiser Program for Youth, each month we choose 4 patients. From neuropathy, nerve diseases and disorders, RSD/CRPS, cancer treatment, medication and devices to other that will ease the life of a youth between 0 and 20.

And we divide $200 by 4. Power of Pain Foundation adds $50 to each chosen youth’s fundraiser account.

If you know anyone who fits our program specifications please contact me.

If you are in California and if you would like to be considered to represent POPF California, in any way, please contact me.  Please understand I cannot promise anyone a representative position.  I would however be most interested in speaking to you from any area of California of which you live.

Twinkle VanFleet, Twinkle.CA@powerofpain.org

May I add that POPF also offered me something else…

In my 20’s,  I was in the running to gather signatures for WSAC City Council

Accidentally in a sense..  Barby Ingle gave me back something, I lost so long ago.

Lets just say.. I’m on it now. And this time,  Que Sera, Sera

Continuing to step up and step out..

and about with POPF.

 

~Twinkle V.

 

I will be attending the RSDSA’s Integrated Solutions to CRPS Conference on Behalf of the Power of Pain Foundation May 10, 2013

I am really excited to announce that in 4 days I will be attending the Reflex Sympathetic Dystrophy Assocation’s (RSDSA) Integrated Solutions to CRPS Conference at San Francisco California’s Airport and Double Tree Hotel.

I will be attending on behalf of the Power of Pain Foundation.

I am eager to learn all that I can while there so that my knowledge regarding CRPS/RSD continues  to expand.

I am very much looking forward to meeting the RSDSA team, listening to Guest Speaker’s, and meeting those attending from various Reflex Sympathetic Dystrophy (RSD) and Complex Regional Pain Syndrome (CRPS) Communities both online and offline.

I look forward to writing all about it after the conference.

Thank you Ken Taylor,  Barby Ingle and the Executive Board of the Power of Pain Foundation.

~Twinkle Wood-VanFleet

California State Ambassador- Power of Pain Foundation