Power of Pain Foundation Co Sponsor Assembly Bill 623

california-sacramento-state-capitol-1Yesterday the Power of Pain Foundation Co-Sponsored AB 623 with Assembly Member Wood at the California State Capital in Sacramento where the bill was officially introduced.  I spoke on behalf of both pain patients and opioid abuse. In attendance with me and on behalf of POPF and the bill was Erik VanFleet, Kharisma VanFleet, Debbie Ellis, and Brandy Ellis.

Speaking at the event was: Assemblymember Wood (author), Assemblymember Levine, Mendocino County Sheriff Tom Allman,  Ralph A. Cansimbe, Chapter Commander PFC Alejandro R. Ruiz Chapter, American G.I. Forum, Representatives from bill sponsors US Pain Foundation, Power of Pain and American Chronic Pain Foundations and the CA Academy of Physician Assistants.

Legislation to Curb Prescription Drug Deaths UnveiledAB623_March242015_POPFCoSponsorWithAssemblymanWood

Published on Mar 26, 2015

(Sacramento) – California legislators, public health representatives and law enforcement officials announced new legislation at a State Capitol news conference to curb prescription drug abuse and deaths. Assembly Bill 623, authored by Assemblyman Jim Wood (D-Healdsburg), aims to reduce prescription drug abuse-related deaths by reducing their access to those most prone to abusing them. More than 60 people die every day in the United States from prescription drug overdoses. Approximately 6.5 million people in the US abused prescription drugs in 2013, more than double those that abused heroin, cocaine and hallucinogens combined. “Narcotic pain medications, or opioids, have an important role in our health care system,” said Assemblymember Wood, who is a licensed dentist. “They provide effective relief for the millions of Americans who suffer from chronic pain. But too easily they are getting into the wrong hands.” Here’s more in this Assembly Access video.http://www.asmdc.org/wood

Watch the Press Conference on Assembly Live

AB623_March242015_POPFCoSponsorWithAssemblymanWood_1

My speech-

Hello, My name is T. VanFleet, I am the Advocacy Director and Executive Board Member of the Power of Pain Foundation. I am also a pain patient myself. Through painful trial and error, my physicians and I have finally found the appropriate combination of medications to provide some relief from my debilitating symptoms. The prescription medications that I take allow me to do things that most people take for granted. Now, I celebrate small triumphs such as cooking, occasionally attending a function, and watching my grandson grow. One of the medications that helped give me my life back is a prescription opioid. A type of medication which has recently come under increased scrutiny due to heavy abuse by some.

Unfortunately, people who use prescription medications as intended can become unfortunate casualties of efforts to regulate opioid abuse, as we end up getting lumped in with those who misuse treatments. It is difficult to obtain refills,, denials and delays by pharmacists and insurance, including workers compensation leave patients in withdrawal and un-manageable circumstances including suicidal ideation.

Fortunately, there are new weapons available to help combat prescription opioid abuse which do not sacrifice the many patients who legitimately use the medications to fight pain. New “abuse deterrent formulations” (ADF) for opioids have properties that make it difficult or undesirable for someone to tamper with them. These medications are made with physical and chemical barriers, such as a special kind of coating or hardness to the pill itself, that won’t allow them to be chewed, crushed, cut, grated, ground up, or melted with water or alcohol.

The Power of Pain Foundation strongly believes that California policymakers must enact policies such as AB 623 to help develop a strong, lasting solution to the health crisis of prescription opioid abuse. We must find a balance that separates patients who truly need opioid medication to live productive lives and those who are abusing them. Responsible patients should not be punished in an attempt to crack down on prescription drug mis-use and abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic pain patients front-of-mind.

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I was honored to support this bill with Assemblyman Wood on behalf of the Power of Pain Foundation. It’s important that we assist in the prescription opioid drug abuse problem. This will help responsible pain patients get access to the care they need. Too many are denied now because of the stigma attached to their chronic pain identity. Abuse deterrent formulation’s will assist both issues.

AB623_March242015_POPFCoSponsorWithAssemblymanWood_2

Press Release Article Tuesday, March 24, 2015

Legislation to Curb Prescription Drug Deaths Unveiled by Assemblyman Jim Wood

For more information on the Power of Pain Foundation’s Policy Efforts, please visit-

Power of Pain Foundation | Policy Efforts | PatientAwareness.org

patient-awareness1-popf

-Friday March 20, 2014 Episode of

The Burning for a Cure show

With Hosts POPF President, Barby Ingle and POPF Executive Board Member & Marketing Director and Promotions Chairman – Joeygiggles and Co-Hosts Executive Board Member and Advocacy Chairwoman Twinkle VanFleet with Power of Pain Foundation Executive Director Ken Taylor.

Discussion: Legislation- Abuse Deterrent Formulation (ADF), more  Listen Here

Out in the real world, I try not to identify as a pain patient. We will be judged. You know it, and I know it. It becomes our label. As I attempt to go forward in advocacy it can sometimes be a little awkward. Not in my physical appearance, but In my inability to speak properly, delays, memory, forgetfulness, stuttering, wake-sleep, sleep-wake. I’m heading into my 15th year with CRPS type 2. My Neurocognitive deficit seemed a rapid decline. It’s part of the story that helps me fight to go on, for my family, for you.

You have to hang on to you! It’s okay to not be perfect. It’s okay to not be your “yesterday”.

The struggle is real. We are who we’ve become.  And it really is okay in all that it is. We might not like it, but we have to learn to accept it.

POPF-CoSponsor-AB623_BrandyEllis_DebbieEllis_TwinkleVanFleet_March242015PostPressConferenceCaliforniaStateCapital

Perfection is all that you can achieve in the here and the now. Getting that shower, getting dressed, combing our hair. Those are the triumphs.

There’s so much worth in the smallest things.

I believe in you! Believe in you, too.

Thank you Barby Ingle for always believing in me and my ability even when I didn’t.

POPF_AB623_KharismaVanFleet_BrandyEllis_DebbieEllis_TwinkleVanFleet_March242015
Lets try to remember to not pre-judge a chronic pain patient on appearance or preconceived notions, but instead, assess on diagnosis, and credibility. ~Twinkle V.

In Your State | Compassion & Choices

Recent Developments

California

Compassion & Choices (C&C) California is campaigning for the End of Life Options Act, which was introduced in the state legislature by Senators Bill Monning and Lois Wolk on January 21, 2015, dramatically accelerating C&C’s 5-year plan to make aid in dying an open, accessible and legitimate medical practice in California. C&C California continues to build bottom-up support at the city and county levels and is driving the grassroots to press for statewide aid-in-dying legislation. At an emotional press conference with lawmakers announcing the bill, powerful C&C advocates spoke out for end-of-life options, including Jennifer Glass, Anita Freeman, and Brittany Maynard’s family – mother Debbie Ziegler, widower Dan Diaz and his brother, Adrian – who returned home to California after Brittany’s death in Oregon.

Read more Recent Developments-

via In Your State | Compassion & Choices.

Answered Prayer

IMG_0263ANSWERED PRAYER

Dedicated to my son Kurtis Ozra VanFleet

by Twinkle VanFleet

March 31st

I LONGED FOR HIS PRESENCE- I DREAMED HE WAS HERE,

I COULD FEEL HIS SPIRIT- FOR I KNEW HE WAS NEAR.

I CRIED IN THE NIGHT- MY BODY ACHING AND OVERWHELMED,

THE MOST BEAUTIFUL FEELING- FOR HIS HOPE THAT I HELD.

I NEEDED HIS COMFORT AND ALL THE LOVE HE WOULD GIVE-

HE WOULD BE THE DIFFERENCE- IN THIS WORLD THAT WE LIVE.

RUMOR WAS I DIDNT DESERVE HIM, I NEEDED TO TAKE CARE OF WHAT I HAD-

NEVER WAS MY HEART SO HURT- BROKEN AND SO SAD.

I CLOSED MY EYES AND HEARD HIM- MY MOMMY, PLEASE DONT CRY-

I AM THE ONE YOU LONGED FOR, MY WINGS HAVE LEARNED TO FLY.

A VOICE SAID, HE’S ALWAYS LOVED YOU, SO YOU WILL BE THE ONE-

I GAVE YOU WHAT YOU ASK FOR, I BLESSED YOU WITH A SON!

©2001-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.

For viewing purposes only. May not be copied, reproduced or altered in any way. Has been published at

several poetry sites through out the years. Originally written 1997.

Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

(Kurtis was born during “The Cold Hard Run” refer to “Look At Us Now”)

Imagery

Happy Birthday my Son, I love you! And I know….

Mama Knows…  She always knows.

Don’t ever forget.

Overcoming the Stress Response

comtragcrpsa1The Sympathetic Nervous System is derived of 2 components. The Sympathetic Nervous System (SNS) and the Para-Sympathetic Nervous System (PSNS) both of which makes up the Autonomic Nervous System. The Sympathetic Nervous System is also known as Fight, Flight or Freeze. Stress and the Brain can be a serious issue for many individuals. Related or unrelated to various diagnosis’. Over the years I have lisened to thousands of individuals with a multitude of diagnoses.

Most of which touch on the the Stress Response. The stress response is “The Sympathetic Nervous System”. The Sympathetic Nervous System is the Stress Response. It is Fight, Flight or Freeze.

Having Complex Regional Pain Syndrome Type 2/Causalgia, I’ve had to take pause for an extra peek. Was there something there in my life at the time to cause my body to take this abnormal path. Has the stress and idea of not being able to heal kept me in this abnormal pattern. For me and only me, I cannot dismiss it. I cannot seem to find anything solid, but our minds don’t always work that way conclusively.

I refuse to give up, yet I fall to my own victimization in that I, at times, give up. It doesn’t matter if it is for 5 minutes or for a day. I have the awareness to know that by giving in, am I somehow reconditioning that stress response. I think it is possible. I use many of the alternative techniques available to me on a regular basis. That is how I survive. I also know that I succumb to fears of the future. Fear is anxiety. Anxiety is fear. Fear and anxiety is stress.  Add stress to chronic pain and you, or I, will always have a vicious cycle to endure.

Rarely do I focus on the physical decline of my being, I am aware. If I did, I would continue to re trigger the same event each and every day. I don’t focus on the look, or what I see. I do have trouble with the fact I can’t get out on my own. I have been trying to clear the secondary issue of depression. Many of us believe we are reasonably well. That is what we represent. My family fell to a hard decline a few years ago and since then it has been non stop. Surreal in some ways. A living dream. My personality type is to fix. My family is everything. My husband, children, and my grandchild.

If I can’t fix it, love it, make it right then it is wrong to me.

I have been taught not to show pain behaviors and not to guard. This is almost nature to me. For years now. Seldom if at all.

Perhaps there are times, yet they would be minimal.

I am on my way to getting better! You won’t be able to until you get rid of everything heavy you ever carried. Why? Because chronic pain has a way of bringing it all back. Heavier than it ever was. You will keep everything inside you. All thoughts, misconceptions, hurts, perceived hurts. You will! You have to let it go. And once you do, you will find peace not only in yourself, but in your pain.

~Twinkle VanFleet

Overview of the Autonomic Nervous System

http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/autonomic_nervous_system_disorders/overview_of_the_autonomic_nervous_system.html

The sympathetic division of the autonomic nervous system maintains internal organ homeostasis and initiates the stress response.

https://www.boundless.com/physiology/textbooks/boundless-anatomy-and-physiology-textbook/autonomic-nervous-system-ans-14/physiology-of-ans-142/sympathetic-responses-750-9204/

Fight, Flight or Freeze: The Stress Response

http://psychcentral.com/blog/archives/2014/07/31/fight-flight-or-freeze-the-stress-response/

What is the Stress Response?

What is the Stress Response

Stress Management

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Chronic Stress Puts Your Health At Risk

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Post Traumatic Stress Disorder (PTSD)

http://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/index.shtml

Systemic Complications of Complex Regional Pain Syndrome

Click to access Systemic-Complications-of-CRPS.pdf

Precious Girl

KharismaandErykahConvoyofHopeforPOPF2012TwinleVanFleet

PRECIOUS GIRL

Dedicated to my daughters Kharisma Anna Magdalena VanFleet(March 11th)

and Erykah Virginia VanFleet (March 15th)

ON YOUR BIRTHDAY,

A WONDERFUL SPIRIT WAS BORN OUT OF LOVE-

OUT OF MY BODY YOU CAME, A BLESSING FROM ABOVE.

SOMETIMES, IT HASN’T BEEN EASY-

MAKING SURE YOU HAVE ENOUGH TO EAT,

AT TIMES, I DON’T GET TO SEE YOU MUCH-

WORKING TO MAKE ENDS MEET.

ALWAYS BELIEVE THAT I LOVE YOU-

FORGIVE ME, FOR THE MOMENTS I’VE MISSED OUT,

FOR I HOPE ONE DAY YOU’LL UNDERSTAND-

WHAT THE QUALITY IN OUR TIME IS ALL ABOUT.

HAPPY BIRTHDAY, MY PRECIOUS GIRLS-

WHEN GOD GAVE ME YOU, HE GAVE ME THE WORLD.

Copyright©1995-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.

For viewing purposes only. May not be copied, reproduced or altered in any way without permission. May be shared with source in view. . Has been published at several poetry sites through out the years. Originally written in 1995.

(You were so little when this was written)

Out of my body you came and…

Happy Birthday my baby girls…

I love you today, tomorrow, forever and a day more.

You have both grown to amaze me in your own ways. You have never let me down. You will go forth in your lives to laugh, smile, cry, laugh again, and I love you more than you know.

Never ever forget that!

~Your Mama

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

Barby Ingle: Tamper-proof pain drugs deserve support

:04 p.m. PST February 28, 2015

It’s no secret that the abuse of pain medications has led to a growing public health problem across the country. The numbers are alarming, and they are growing.

But also alarming is the number of people who suffer with chronic pain, including many who come to the desert seeking the arid climate for relief.

The problems are complex and multi-layered and I always applaud solutions that help to balance pain management with the cost that prescription drug abuse has on society. Promising technological advancements in recent years are proving to be an important part of the battle. Among these are so-called “abuse deterrent formulas” of commonly prescribed narcotic painkillers that are being developed to prevent some of the most deadly forms of pain pill abuse.

Since 2002, I have been battling Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body. I know firsthand how difficult the journey for relief can be, particularly the sidelong glances and disbelief from medical professionals. One in three people (116 million) in the United States are affected with a condition that causes pain.

But what if there were medications that can offer pain sufferers relief, while also protecting those who might be prone to abuse them?

There are. These little known, new tamper proof formulas of strong narcotic pain medications provide patients with the same pain relief as conventional opioids, while incorporate breakthrough technology designed to protect against tampering and abuse.

Several states are considering legislation this year to improve and safeguard patient access to these new formulas of painkillers.

Abuse-deterrent formulations have received widespread support as part of a comprehensive effort to combat prescription drug abuse and promote appropriate pain management, including from the Office of National Drug Control Policy, the Community Anti-Drug Coalitions of America, members of Congress, and the National Association of Attorneys General — including California Attorney General Kamala Harris.

Abuse of pain medications has led to a growing public health problem in California and nationwide. Each year approximately 4.5 million Americans use prescription pain medications for non-medical purposes, contributing to more than 16,000 deaths annually.

This technology is only part of the solution; but it is a solution nonetheless. Patients that have struggled with addiction or substance abuse in the past, those who live with others who are current or recovering addicts and those who live with teens or young adults who may seek opioids for recreational use can all benefit from ADFs.

Abuse-deterrent formulations have received widespread support as part of a comprehensive effort to combat prescription drug abuse and promote appropriate pain management, including support from the Office of National Drug Control Policy, the Community Anti-Drug Coalitions of America, members of Congress and the National Association of Attorneys General.

To date, the Food and Drug Administration (FDA) has approved abuse-deterrent labeling for four drugs, with other abuse-deterrent opioids in various stages of development.

For the sake of those with legitimate, life-altering pain and for the safety of those prone to use these medications for non-medical use, I urge our lawmakers to stand up for policies that preserve and improve patient access to this new technology. Failing to do so would be failing to do all we can to protect our residents.

Barby Ingle is a chronic pain educator, patient advocate and chairman of the board for the Power of Pain Foundation.

via Barby Ingle: Tamper-proof pain drugs deserve support.

Another excellent article “urging our lawmakers to stand up for policies that preserve and improve patient access”. With the Power of Pain Foundation as a sponsor of the new bill CA AB623 on Abuse Deterrent Formulations addressing Opioid Abuse, this Op-Ed by our ‪#‎POPF‬ President has special significance being published today, ‪#‎RareDiseaseDay‬

Love My Crazy

Love My Crazy

By Twinkle VanFleet

Love my crazy
Love my fire
Love my passion
I desire

Love my laughter
Love my pain
Love my compassion
By which I’ve gained

Love my present
Love my past
Love the future
At a glance

Love opening minds
Love removing blinds
Love makin’ points
With aching joints

Love spreading word
While still not cured
Love faking it
Toward making it

Love a little change
To rearrange
Love to share
And make aware

Love my path
And my faith
Love my heart
And his grace

Love my uncertainty
And my place
Love my light
And my space

Love my actions
By which I learn
Love my words
Palms upturned

Love my mind
And my emotion
Love my crazy
And my devotion.

©2015 Twinkle VanFleet  All Rights Reserved.

Copyright Laws and Regulations of the United States
http://www.copyright.gov/title17/

comtragcrpsa1

Relaxation Techniques for Stress Relief: Finding the Relaxation Exercises That Work for You

For many of us, relaxation means zoning out in front of the TV at the end of a stressful day. But this does little to reduce the damaging effects of stress. To effectively combat stress, we need to activate the body’s natural relaxation response. You can do this by practicing relaxation techniques such as deep breathing, meditation, rhythmic exercise, and yoga. Fitting these activities into your life can help reduce everyday stress and boost your energy and mood.

The relaxation response: Bringing your nervous system back into balance

Stress is necessary for life. You need stress for creativity, learning, and your very survival. Stress is only harmful when it becomes overwhelming and interrupts the healthy state of equilibrium that your nervous system needs to remain in balance. Unfortunately, overwhelming stress has become an increasingly common characteristic of contemporary life. When stressors throw your nervous system out of balance, relaxation techniques can bring it back into a balanced state by producing the relaxation response, a state of deep calmness that is the polar opposite of the stress response.

When stress overwhelms your nervous system your body is flooded with chemicals that prepare you for “fight or flight.” While the stress response can be lifesaving in emergency situations where you need to act quickly, it wears your body down when constantly activated by the stresses of everyday life. The relaxation response puts the brakes on this heightened state of readiness and brings your body and mind back into a state of equilibrium.

Producing the relaxation response

A variety of different relaxation techniques can help you bring your nervous system back into balance by producing the relaxation response. The relaxation response is not lying on the couch or sleeping but a mentally active process that leaves the body relaxed, calm, and focused.

Learning the basics of these relaxation techniques isn’t difficult, but it does take practice. Most stress experts recommend setting aside at least 10 to 20 minutes a day for your relaxation practice. If you’d like to get even more stress relief, aim for 30 minutes to an hour. If that sounds like a daunting commitment, remember that many of these techniques can be incorporated into your existing daily schedule—practiced at your desk over lunch or on the bus during your morning commute.

Finding the relaxation technique that’s best for you

There is no single relaxation technique that is best for everyone. When choosing a relaxation technique, consider your specific needs, preferences, fitness level, and the way you tend to react to stress. The right relaxation technique is the one that resonates with you, fits your lifestyle, and is able to focus your mind and interrupt your everyday thoughts in order to elicit the relaxation response. In many cases, you may find that alternating or combining different techniques will keep you motivated and provide you with the best results.

How you react to stress may influence the relaxation technique that works best for you:

How do you react to stress?

Do you tend to become angry, agitated, or keyed up?

You may respond best to relaxation techniques that quiet you down, such as meditation, deep breathing, or guided imagery

Do you tend to become depressed, withdrawn, or spaced out?

You may respond best to relaxation techniques that are stimulating and that energize your nervous system, such as rhythmic exercise

Do you tend to freeze-speeding up internally, while slowing down externally?

Your challenge is to identify relaxation techniques that provide both safety and stimulation to help you “reboot” your system. Techniques such as mindfulness walking or power yoga might work well for you

Do you need alone time or social stimulation?

If you crave solitude, solo relaxation techniques such as meditation or progressive muscle relaxation will give you the space to quiet your mind and recharge your batteries. If you crave social interaction, a class setting will give you the stimulation and support you’re looking for. Practicing with others may also help you stay motivated.

Relaxation Techniques and More Information-

via Relaxation Techniques for Stress Relief: Finding the Relaxation Exercises That Work for You.

Is Ketamine the Next Great Depression Drug? | Al Jazeera America

February 12, 2015 12:00PM ET

In April, a University of Oxford study in the Journal of Psychopharmacology found that approximately a third of patients with treatment-resistant depression saw immediate improvements in their moods. And since 2012, studies from Yale University, Houston’s Baylor College of Medicine and New York’s Mount Sinai School of Medicine found that ketamine is overwhelmingly successful for treatment-resistant patients.

Researchers are the excited about these developments in hopes of combatting the rising number of depression cases nationwide. Almost 7 percent of Americans 18 or older – about 16 million people – suffered at least one major episode of depression in the last year, according to NIMH. The World Health Organization recently found that “depression is the predominant cause of illness and disability” for boys and girls 10 to 19 years old. In the United States, lost productivity and health care expenses from depression cost an estimated $80 billion a year. And those trends are not expected to slow down. National Institutes of Health researchers project depression to be “the second leading cause of disability worldwide and the leading cause of disability in high-income nations, including the United States” within 20 years.

Read the full story here-

via Is Ketamine the Next Great Depression Drug? | Al Jazeera America.