Pain Awareness Month 2015 – Mid Month Review with Feature 7- The ACPA- History of Pain Awareness Month

I wish I could share the goodness of the world with everyone. The people I’ve shared have been people who are making an impact in the lives of others despite their own complications. Illness, disability, pain, yet hope enough in their passion’s to keep going… for you.

Some of them I barely know in the sense of talking with them. A few of them, I’ve had less than an hour or so of combined time in conversation exchange. Having the gift of knowing and the ability to feel at higher levels than most, I was compelled to ask these people if I could share them, honor them, and feature them this month. Each one of them, by their own energy, gave me a piece of them, the part that let me show you who they are in spirit. It was by a glimpse of their own souls experiences that led me to reach out to them.


Pain Awareness Month 2015 – Feature 1 – The Faces and Limbs of Pain

Pain Awareness Month 2015 – Feature 2 – Trudy Thomas, Living with HOPE Radio Show

Pain Awareness Month 2015 – Feature 3 – Shane Schulz, Arisen Strength

Pain Awareness Month 2015 – Feature 4 – Power of Pain Foundation

Pain Awareness Month 2015 – Feature 5 – Sheila Purcell – United Kentucky Pain Care Action Network

Pain Awareness Month 2015 – Feature 6 – Epithelioid hemangioendothelioma (EHE)

Pain Awareness Month 2015 – Feature 7 – American Chronic Pain Association

Have you ever wondered about the history of pain awareness month? The American Chronic Pain Association and Partners for Understanding Pain is your last feature share for September.

September is Pain Awareness Month

Below you will find the history of pain awareness month in a timeline PDF document. Beginning in 2001 with a pain awareness campaign. Did you know? Please consider sharing so that others might learn also. Be sure to share in the documents original form.

Pain Awareness Month History

For more information

The American Chronic Pain Association (ACPA)

The American Chronic Pain Association (ACPA)
Partners for Understanding Pain

Pain Awareness Toolkits

You can also find the American Chronic Pain Association on:




The information provided is for pain awareness and educational purposes only. All rights reserved to The American Chronic Pain Association for their content.

I hope that I’ve proffered enough of myself this year for you and I wish you all the very best in your journeys to continue to make a difference in the lives of others. I pray each of you get all that you need in this life and give back all that you’re able to.


I wish you all well,

And enough.

~Twinkle V.

Te quiero más

Pain Awareness Month 2015 – Feature 5 – Sheila Purcell – United Kentucky Pain Care Action Network

Sheila Purcell


Sheila Purcell isn’t your average pain patient. She’s actively involved in reforming laws and regulations that directly impact’s the quality of life of those suffering from chronic, long term, intractable pain. Sheila endures pain everyday herself, the life threatening seizures leave her worn, yet she’s a fighter, a strong one.

As an advocate and spokesperson supporting medication management options, including opioid analgesics, she stresses how important that it is that these prescription pain relievers should not be withheld as an initial treatment plan or be removed from the course of treatment for patients who are already using them.

Sheila recognizes that controlled substances are needed to treat certain conditions and that removing them as options for treatment causes hardships that are sometimes irreversible. She’s dealt with denials, delays and dismissal’s herself and knows first hand the demise of quality of life. There is more risk in under treated pain and the direct or unintended consequences than there is in the stable regimen of prescribed pain management.



Sheila was featured on The Pain Nation show with Ken McKim – Episode 1



She’s the Founder of the United Kentucky Pain Care Action Network (UKPCAN) (Closed Group)

United Pain Care Action Network of Kentucky and Tennessee (Community)

The mission:

“Kentucky Pain Care Action Network” is a network of people living with Chronic Intractable Pain, their caregivers and others who share the belief that people suffering with Chronic Pain, Cancer, Mental Illness or any other disease have the right to timely, appropriate and effective Pain Care Management and Medical Treatment.

“Kentucky has a major problem that needs to be addressed and we want to help change the negative stigma around to positive for those in pain.”

We educate people and teach them that suffering from pain is not acceptable!

We do this though active advocacy, education, letter writing campaigns to State and Local Representatives and Senators. E-mails, faxes, telephone calls to our elected officials. We comment on “our” elected officials Facebook pages, we write letters to the Editor of our newspapers, we comment on articles posted in the group. We take action and by doing so, we make our efforts known.

Therefore it is very important that each group member take an active role in these actions. It only takes a few minutes a day to make a comment or write a letter. Many members set aside 30 minutes of one day to do this. WE MUST DO THIS TO MAKE OUR CAUSE KNOWN!

We are a Open Group. All info in this group is private and CANNOT be used for any purpose other than what each member give’s permission for us to use it for. This includes your Name, City, and County in which you live Medical Conditions, and any treatments you are receiving or have received.

The more people that are involved the quicker we can make progress on bringing it to the attention of Kentucky’s law makers and make them understand that HB- 1 & HB- 217 needs to be re- written to protect the THOUSANDS OF PEOPLE SUFFERING as a result of these bills

They also need to be aware that this has hurt “TOURISM” and will continue to do so as NO one wants to vacation in a state were Medical Care is NOT something they would receive if they or a family member becomes ill or has an accident of any kind requiring, surgery or pain care.

Let’s get busy fellow Kentuckians and show the lawmakers we will not rest until HB-1 and HB-217 are repealed!

“Kentucky Pain Care Action Network”


Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill”

Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill” (Community)

Chronic pain patients that are trying to get Pill Mill Bill’s reformed ln EVERY STATE not just Kentucky! Please join the fight and cause. Thank you!

This page is dedicated to raising awareness for chronic pain patients, children with attention deficit disorder (ADD/ADHD), Cancer patients, HIV/AIDS patients, patients suffering from certain mental disorders, patients requiring Testosterone, and their families affected by the changing environment of the medical community whereby those in need of controlled substances are refused treatment or made to endure many hardships, unnecessary for their care, as a direct result of laws enacted by the state of Kentucky.

Through any peaceful means necessary, we seek to contact State and Community leaders, The American Medical Association, Pharmaceutical Vendors, the DEA, the FDA and local/national media sources.


Mission and information statements by Sheila Purcell.


Sheila is a Delegate for the Power of Pain Foundation, active in various groups and organizations throughout the States, and she continues to work on much-needed change for the thousands of people suffering from pain and the inadequate treatments they are receiving.

If you need a voice for Kentucky and Tennessee pain care rights, Sheila isn’t shy. Her vast knowledge is your benefit. Her leadership is your tool.  The information she provides is your education. Her strength is your willingness to take part in your own health challenges and I hope all of you get the proper and timely care you need to survive.


Sheila can be contacted at:

Pain Awareness Month 2015 – Feature 4 – Power of Pain Foundation

Melanie.32The Power of Pain Foundation began November 26 of 2006 in memory of Melanie McDowell who passed away that same year and in honor of Barby Ingle. Both ladies suffered from intractable pain. Melanie was diagnosed with Reflex Sympathetic Dystrophy in 1994 as result of Gallbladder surgery. She passed away in July 2006. One month after this photo was taken.


Barby being an Endometriosis survivor, developed Reflex Sympathetic Dystrophy in 2002 after a car accident.

Melanie was an RSD patient and advocate from 1994 until 2006 when the family lost her. It was her biggest hope that other patients would receive timely and proper access to care. She was involved in various RSD awareness projects to promote better outcomes for those with RSD and other chronic pain conditions. The Power of Pain Foundation carries on Melanie’s passion and the work that she did by recognizing the efforts of others and the work that they do.

Melanie McDowell Chronic Pain Awareness and Advocacy Award



Past recipients include:

2014 – Dominick Spatafora
2013 – Paula Abdul
2012 – Trudy Thomas
2011 – Barby Ingle
2010 – Mary French, RN
2009 – Mackenzie Bearup
2008 – Dale Lehn
2007 -In memory of Melanie McDowell


Jim IngleIn March of 2007 the Power of Pain Foundation was awarded it’s 501 (C) (3) non-profit status. A family led organization from 2006 to 2010 when they expanded to include others. Mr. Jim Ingle was an active board member until December of 2014 when he went into worsening kidney failure. While I was never a board member with Mr. Ingle, I recall fondly attending meetings as California Ambassador in his presence. This gave me the opportunity to meet him, hear him speak and learn what POPF means to him. Mr. Ingle is currently fighting for his life due to restrictions on transplants. My heart goes out to him and his family.

The face of Power of Pain began with the spunky, motivated, courageous, light-hearted, cheerleader for life Barby Ingle, who with the support of her husband Ken. pushed past pain to achieve the mission the family started off with. Comic Pain Relief and the National P.A.I.N. Summit continues to be major yearly events. Bringing both laughter and education to pain patients, caregivers, extended families, and those interested in the topics and treatments offered. Bringing you members of the healthcare community and top influencers to bring you a variety of non invasive modalities, options, access solutions, medication management, cutting edge research, panels and celebrity guest speakers. Comic Pain Relief will leave your endorphin’s fulfilled and your pain eased while you enjoy, laugh, and celebrate.

Barby has used her experiences, education, and extended self-education to become a motivational speaker, best-selling author, advocate, and face of pain to do live radio, television, author articles, appear in public all over the States to help influence positive change for pain patients everywhere. Our first face of pain for Reflex Sympathetic Dystrophy to make it into major media and give notoriety to an illness many of us strive to survive everyday. Giving hope to other’s who are still stuck in the diagnosis phase of their journey, and offering opportunities to others to help support Power of Pain Foundation’s mission.


The Power of Pain Foundation’s (POPF) mission is to educate and support chronic pain patients, specifically those with neuropathy pain conditions. The POPF provides community based services that address needs of chronic pain patients with neuropathy conditions such as RSD/CRPS, post cancer pain, fibromyalgia, diabetic neuropathy, lyme, lupus, multiple sclerosis, arachnoiditis, dystonia, colitis, endometriosis, and more. We fulfill our mission by:

Promoting public and professional awareness of Neuropathy chronic pain conditions.
Educating those afflicted with the painful neuro diseases, their families, friends and healthcare providers on the disabling pain it causes.
Provide action-oriented public education and pain policy improvement through activities and efforts to eliminate the under treatment of chronic pain and increase proper access to care.

Advocating for not only RSD, but dozens of significant pain diseases and syndromes, the Power of Pain Foundation is leading the way for pain patients to share their stories and take part in amazing opportunities.

Music Moves Awareness Casting
Music Moves Awareness: seeks 15-20 chronic pain patients with different background, conditions, ages, symptoms, treatments, to appear in music video, featurette, and media interviews, representing their personal pain journey.

4SisterProductionz is currently casting pain patients for 1-3 day on set filming in Los Angeles to take place in early 2016.

If you are interested in being considered for one of these spots please send us a recent snapshot photos (non professional photos preferred) featuring your look as well as completed form.

Due to the volume of applicants we will not be responding to each and every submission. Chosen applicants will be contacted to move forward in the process over the next few months.


“Where words leave off, music begins.”
~ Heinrich Heine

A few 2015 Highlights

OIC (Opioid Induced Constipation)
Speaking engagements, panels, and media.

CA AB 623 Abuse-deterrent opioid analgesic drug products
Power of Pain Foundation Co Sponsor Bill with Assemblyman Jim Wood

Abuse Deterrent Formulations
Bring Down the Hammer

Power of Pain: Changes in Family Dynamics
September 01, 2015
By Barby Ingle, Columnist

Power of Pain: Check Your Medical Bills for Errors
August 20, 2015
By Barby Ingle, Columnist

Power of Pain: Tools for Today and Tomorrow
August 04, 2015
By Barby Ingle, Columnist

Power of Pain: The Benefits of a Positive Attitude
June 25, 2015
By Barby Ingle, Columnist

Power of Pain: Take Charge of Your Pain Care
June 15, 2015
By Barby Ingle, Columnist

Power of Pain: There is Great Reason for Hope
June 02, 2015

Barby’s blog


Awards and Honors


Barby’s books


More at:
Portal to:

RSD Quilts are dedicated to ALL patients and loved ones everywhere who worked to spread awareness or to raise money for RSD.

If you haven’t had a good laugh lately, then you should check out this night laughs. COMIC PAIN RELIEF is a charity benefit show
hosted by the Power of Pain Foundation (POPF), a 501-C-3 charity.

Join us in raising awareness of RSD, Diabetes and all nerve pain conditions. In an effort to increase access to care, patient and
caregiver education, proper treatment option availability, and support for pain patients we are hosting events through the month of
NERVEmber and all year long!

The Power of Pain Foundation is happy to support and sponsor pain care legislation on a state and national level. Easy Things You
Can Do To Take Action 1) Write Letters to your legislators 2) Call your legislators 3) Spread the word through social media for
others to do the same.

Author Barby Ingle shares her powerful story about how life-changing events force reflection and sprouts new beginnings. Barby
Ingle is a Chronic Pain Educator for the Power of Pain Foundation, as well as a motivational speaker and patient advocate.

Power of Pain Foundation (POPF) provides community based support services that address needs of chronic pain patients with
Neuropathy conditions such as RSD/CRPS, Post Cancer Pain, Fibromyalgia, Diabetic Neuropathy, and many more.

There’s so much more to come.

With Motivation for a Cure…  We are Turning Pain to Power.

September PAM POPF

Aftermath of Tragedy- God Bless the USA !

Aftermath of Tragedy

God Bless the USA !

by Twinkle Wood-VanFleet


Headlines read

“America under attack”

My body began to shiver,

The World Trade Center One was on fire

My heart began to pound,

Why, oh why..this cold malicious act.

Please God, help the People,

Another plane heading for Tower Two

Oh, I Prayed.. Lord catch Them..

They’re heading straight for You.

Tears streamed down my cheek..

Our People scattered around,

Praying for New York City

Thousands never to be found.

Let Our Country show No mercy

Terrorism is not the way…

An ultimate price shall be paid

Soon comes judgement day.

In the aftermath of tragedy

Hoping pain eases in the hearts

Of the Families left behind

If not today or tomorrow…

Then somewhere in time.

Yes, I’m still proud to be an American

Even evil couldn’t take that away

I’m as free as Our People they killed

God Bless, the USA!

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

Unauthorized duplication is prohibited. Copyright Laws and Regulations of the United States

Published in both hard print and audio.


Pain Awareness Month 2015- Feature 3 – Shane Schulz, Arisen Strength

Shane Schulz is on a mission. He’s gained experience, knowledge and spiritual enlightenment through his own journey. He’s able to relate on a level many would not understand. He has knowledge of military academies, co-dependency, co-addiction, dependency and addiction, personality disorders, homelessness, abuse and child abuse. He understands varying emotions, self loathing, low self esteem, grief and depression. He’s familiar with post traumatic stress disorder (PTSD), types of suicide, ideations and therapy. He understands the importance of love and acceptance. After a bit of a hiatus and feeling a sense of dis-ease, a purpose yet to be fulfilled, and a heart that hadn’t beat for a purpose in some time.. it came suddenly.

After about 2 years of feeling stuck, that place inside us, most of us know, he felt the beat again and Arisen Strength was born. Listen to The Beginning- Arisen Strength Concept and Mission


Shane together with co-host Wayne Hacker bring you a weekly podcast Sunday nights at 8:00 p.m EST. They aim to help others bring their suppressed dreams and talents back to life again! Harnessing both your purpose and your strength. Do you know your purpose? Your strength? Arisen Strength is bound to awaken what’s already inside you.

A few episodes have included, but are not limited to Bullying, Lyme Disease, Multiple Sclerosis, Mental Health Awareness Month, Lupus, Mold Awareness, Depression and PTSD, When Life Gets Hard, Domestic Abuse, The Freedom of Acceptance, Addiction, Understanding Depression, Donorship and the Human Factor, Autism, Self Esteem, and To Encourage and Empower.

Through his higher power, his God, and new-found determination that began anew with that beat of his heart it wasn’t just Shane who was born again that day, but Arisen Strength, too.

He shares his journey so that you might identify with him and the message he brings for you. When you think you have failed, lack self-worth, are without strength, with an unfulfilled purpose, he will bring back that strength in you and help you rise to your fullest potential. He’s a motivational speaker for Serenely Speaking which he also founded.

Shane and Wayne bring you topics often dismissed.

Shane Shultz- Arisen Strength Cropped

In an interview with Shane he mentioned primary and secondary emotion’s. I knew right away where he was going even though we didn’t stay on topic more than a minute or two. It’s important for me to mention this because by him being aware of the primary and secondary’s in such a way of already realizing how emotions impact our everyday lives, he’s able to utilize this knowledge as he helps bring you out of the emotional roller-coasters of life. The negative impact of our own emotions and the consequences that come with them can be devastating.

We need to learn how to replace negative feelings of hopelessness with a positive sense of well-being.

The website is born!

Arisen Strength events can now be found ALL in one spot!

1. Watch the show and chat with friends in the Arisen Strength Chatzy Show Room!
*They have a Mobile app built into the page for those who watch on their phone!

2. Twitter Feed
3. Facebook Feed
4. New Spotlight Videos
5. Both Shane and Wayne have their own Blog that you can comment on.
6. Feedback – They want to hear from you!

Check them out! There’s more to come.

FACEBOOK – – Profile Arisen Strength – Brand NEW- The Arisen Strength Family – Profile (Serenely Speaking owns Arisen Strength) – This is the Interactive Show Room where you  can watch
the show and chat all in one place.




“How It Works In Reality” (Episode 19)  – An episode where Shane and Wayne explain how they use the
Arisen Strength concepts in their daily lives


Pain Awareness Month 2015 – Feature 2 – Trudy Thomas, Living with HOPE Radio Show

Living with HOPE began in 2007 under its original title Living with RSD. It was Trudy Thomas’ hope to learn more information about her own health issue, the debilitating and painful illness RSD/Reflex Sympathetic Dystrophy and with that a show was born. Bringing both traditional Western Medical Practices and Complementary and Alternative Medicine (CAM) practitioners with expertise in prevention to cutting edge technology.

Living with HOPE- Trudy Thomas

Trudy Thomas is returning to radio!

Stay tuned!

Trudy empowered, informed and educated her listeners with information that wasn’t always readily available in a patient’s local area. Through the power of the internet she had the ability to bring you some of the most knowledgeable physicians, researchers, and advocates in the world.

Guests/Interviewee’s have included: Physicians, Counselors, Spiritual Healers, Psychologists, Pain Management Specialists, Alternative and Homeopathic Healer’s, Energy Healer’s, Medical Authors, Biographers, Researchers, Reiki Master’s, Herbalists, Chinese Medicine Practitioners, Clinical Trial Physicians, Patients, Patient Authors, many more.

Some Topics have included: Meditation, Biofeedback, Guided imagery, Relaxation techniques, Breathing exercises, Holistic healing, Energy healing, Coping strategies, Distraction, Depression, Spinal Cord Stimulation (SCS), Pain Management, Medication management, Ketamine, Calmare (Scrambler Therapy), Mirror therapy (Mirror Box), DMSO, Low Light Laser Treatment Therapy (LLLT), Functional Restoration, IVIG, Neuropathies, RSD/CRPS, Herbal Remedies, Chinese Medicine, Neuro Inflammatory Disease (NID) and much more.

Trudy broadcasted live from PAINWeek 2013, September 5th and 6th. Hosting the Featured Living with HOPE Radio Show with Co Host Barby Ingle of the Power of Pain Foundation. Together they interviewed 4 doctors each day with varying backgrounds in pain and treatments.

Trudy’s network was the original hot spot for the Burning for a Cure show with Barby Ingle.

Trudy was the Nevada Ambassador for the Power of Pain Foundation until 2014.

She is the 2012 recipient of the Melanie McDowell Chronic Pain Awareness and Advocacy Award.

Trudy’s live shows ceased approximately 9 months ago. The archives are available for you.

Her Living with HOPE Show on the Body, Mind and Spirit Network became a featured Blog Talk Radio Broadcast in February of 2013 and retains that featured status today. Her flavorful interviews, upbeat personality, and casual atmosphere gave us a mixture of guest education, information and awareness, co hosting fun, thousands of listeners and our body, mind and spirits were left fulfilled with either something learned, something gained or something to look forward to. Hope.

Living with Hope
Body, Mind and Spirit Network

Living with Hope
Search Results- Google

Living with RSD
Search Results- Google

Living with Hope was originally known as Living with RSD

Trudy can be contacted at:

Pain Awareness Month 2015 – Feature 1 – The Faces and Limbs of Pain

The faces and limbs in these videos are many of the people you have crossed paths with over the years. They may be your friend, colleague, or acquaintance.  For other’s, you may not have realized what it is they endure. They’ve shared this part of themselves to educate and bring awareness to Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. The faces you gaze upon seem fine, look well enough, perhaps not even a glimpse of pain, or discomfort. Such an illusion. The delusion lies less in the patient who complains than it does in the provider who doesn’t care to look beyond what initially seen.  You’ll then watch the limbs of people and if you make note, you’ll find that those faces …   live with more than just an ache.  To see it, you have to look beyond the faces.

It’s Pain Awareness Month. Share and make aware to continue the common mission of all of us everywhere who strive to make a difference in the lives of those suffering to survive.

Thank you for all you do!



Faces of Motivation 5 by Power of Pain Foundation ––Bpw



Uploaded on Jan 22, 2012
This is the 5th Faces of Pain video by the Power of Pain Foundation. The video contains chronic care patients who
are dealing with an autoimmune condition which attacks the nervous system, immune system, muscle, bone and
sometimes organs. For more information on the POPF or RSD please visit The video was
produced by Twinkle VanFleet and Kurtis VanFleet. Background Image taken by Kurtis VanFleet. This video is
property of the POPF copyright 2012. All rights reserved. The Power of Pain Foundation is a 501(C)(3) Charity.
“Little Wonders” by Rob Thomas (Google Play • iTunes • AmazonMP3)



RSD / CRPS Limbs Montage –



Published on Jul 12, 2012
This video goes through pictures of RSD/CRPS patients who have visual symptoms of their extremities (hands, arms,
legs and feet). RSD is a Neuro-Autoimmune condition which affects many aspects of the body. For more information
visit Power of Pain Foundation. Special thanks to Twinkle and Kurtis VanFleet, and singer Page Jackson.


Faces of Pain Video 6 (In English and Spanish) –



Published on Aug 2, 2014
Faces of Pain Video – 6th edition for Power of Pain Foundation
Created by Twinkle VanFleet, Executive Board Member, Power of Pain Foundation
Spanish Translations by Vanessa Lara, California Representative, Power of Pain Foundation


POPF September is Pain Awareness Month


Nada hay más surreal que la realidad.

Pain Awareness Month 2015 Featured Sneak Peeks

A little sneak peek into next months efforts to raise continued awareness.  Beginning September 1st a combination of people, groups and organizations will be brought to you for Pain Awareness Month 2015.  There will be additional shares in between. These are the 8 features. The pages may be posted out-of-order of that listed at this time.

Trudy Thomas- Featured Blog Talk Radio Host and Founder of the Living with HOPE Show on The Body, Mind and Spirit Network.

Danielle Cosgrove, Founder of TheProject3x5.

Barby Ingle, President of the Power of Pain Foundation.

Shane Shultz, Founder of Arisen Strength.

Faces of Pain Video 5, RSD/CRPS Limbs Montage, Faces of Pain Video 6 (in English and Spanish).

Sheila Purcell, Founder of the United Kentucky Pain Care Action Network (UKPCAN)

The Power of Pain Foundation

The American Chronic Pain Association (ACPA) and the history of Pain Awareness Month.

A special feature coming from PK Saint-Amour

WeHaveAllBeenUnitedByASingleCommonDenominatorAndThatIs...Pain by TwinkleVanFleet@rsdcrpsfire 2

Thank you for all you do.

Broadcasting Live From PAINWeek 2013 Living With HOPE



Broadcasting live from PAINWeek 2013 Host Trudy Thomas of the Featured Living with HOPE Radio Show will be on the air with Co Host Barby Ingle of the Power of Pain Foundation and together they will be interviewing 4 doctors a day with varying backgrounds in pain and treatments that they each have to offer. Each doctor will get 15 mins of air time.

Living w Hope painweek 2013

Trudy and Barby will be doing a 1 hour broadcast live from PAINWeek on Sept. 5th and 6th.

Be sure to stop by the chat room or phone in to listen and find out which doctors will be featured.

Call in to speak with the host and guest speakers  (347) 884-9691 

Are you living with a chronic illness? Chronic Pain?

Depression? You are not alone.  Join us to meet some amazing guests who have walked the same path and come out on the other side.

This show delivers hope, practical advice, ways to find your own path and would like to hear from you about your journey.