National Pain Strategy Chat #NPSChat- Review

Posted by twinklev

The first National Pain Strategy Chat was held on September 29, 2015. Hosted by the Power of Pain Foundation with formal guest speakers Bob Twillman, Executive Director of the American Academy of Pain Management, Lynn R Webster VP of Scientific Affairs, PRA HS, Former President of the American Academy of Pain Medicine, Author of The Painful Truth and Christin Veasley, founding member of the Chronic Pain Research Alliance, whose mission is to advance scientific research on prevalent, neglected and poorly understood pain disorders that frequently co-occur and disproportionately affect women.

“The Assistant Secretary for Health and Human Services (HHS) asked the Interagency Pain Research Coordinating Committee (IPRCC) to oversee creation of this resultant National Pain Strategy. Guided and coordinated by an oversight panel, expert working groups explored six important areas of need identified in the IOM recommendations—population research, prevention and care, disparities, service delivery and reimbursement, professional education and training, and public awareness and communication. The working groups comprised people from a broad array of relevant public and private organizations, including health care providers, insurers, and people with pain and their advocates.”

Excerpt from EXECUTIVE SUMMARY Page 3.

National Pain Strategy
A Comprehensive Population Health-Level Strategy for Pain

http://iprcc.nih.gov/docs/DraftHHSNationalPainStrategy.pdf

Attendee’s included but are not limited to, Women in Pain (@forgrace), Gina Salminen (@gnsalminen), American Academy of Pain Management (@AAPainManage), PAINS Project (@PAINSProject), The Pain Community (@PainComm), Fibro and Pain (@FibroAndPain), US Pain Foundation (@US_Pain), State Pain Policy Advocacy Network SPPAN (@SPPAN1), The American Chronic Pain Association (@ACPA), Reflex Sympathetic Dystrophy Association RSDSA (@RSDSA), Community Pain Center (@Our_CPC), Bob Twillman (@BobTwillman), Lynn Webster (@LynnRWebster), Christin Veasley (@CPRAlliance_org), Power of Pain Foundation (@powerofpain), Barby Ingle (@barbyingle), Consumer Pain Advocacy Task Force CPATF http://consumerpainadvocacy.org/twitter-chat/

The Chat Transcript is available at:

The Consumer Pain Advocacy Task Force CPATF

Direct link to PDF

http://consumerpainadvocacy.org/wp-content/uploads/2015/10/Twitter-Chat-9-29-2015-CPATF-Transcript-Final1.pdf

http://consumerpainadvocacy.org/twitter-chat/ http://consumerpainadvocacy.org/

The Interagency Pain Research Coordinatiing Committee- National Pain Strategy

http://iprcc.nih.gov/National_Pain_Strategy/NPS_Main.htm

Solicitation of Public Comments on Draft National Pain Strategy
DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health

http://iprcc.nih.gov/National_Pain_Strategy/Public_Comment_NPS_Draft.htm

National Pain Strategy
A Comprehensive Population Health-Level Strategy for Pain

http://iprcc.nih.gov/docs/DraftHHSNationalPainStrategy.pdf

Overview of the NPS Planning Process and Major Elements by Sean Mackey –

Presented at the NPS Collaborators Meeting Convened by PAINS – June 29, 2015

http://www.painsproject.org/overview-nps-planning-process/

While I participated to send out Questions, and re-share answers, I used the opportunity to listen instead of voice any thought at this time.

In closing, The Power of Pain Foundation asked – We’ve covered quite a bit today. Would you be interested in a future chat about NPS—if yes, on what? #CPATF #NPSChat

My response- Yes. Q and A’s educate to form solutions and partnerships. Chats provide opportunity for involvement.

This was my only contribution. For those who haven’t read the National Pain Strategy, I encourage you to do so now. We often want to be involved and voice our opinions, we want to help make change, or be there to advocate for our loved ones, or ourselves, yet too often we rely on others to tell us what something is, what it says, or what it’s all about. You have to read it for yourself, otherwise, you’re only receiving pieces and parts and from another’s perspective. I’m not embarrassed to admit a one time read isn’t enough. Neither is the second re-do. It’s in-depth and complex.

Future chats are important for all of us to come together to discuss the report.

After the NPSChat I was asked “@rsdcrpsfire @powerofpain Do you believe Sean Mackey cares? or NIH cares?”

I did exchange further conversation with the person who asked and replying to other questions. And I hope Mr. Mackey does care as my own daughter is now in the care of Stanford, both transplant center and pain management. His job is above caring though. Learning that Dr. Mackey’s parents both live with chronic pain didn’t really impact me. It only means that he does in fact have a personal connection to pain in addition to his education and experiences. It doesn’t mean at all that it will influence him either way. Of course my heart goes out to his parents.

It’s like saying “my best friend is black” to appease a situation of color. Stating a family member has chronic pain is like attempting a nudge toward acceptance. It doesn’t make any difference to me. Actions speak louder than words, so we’ll see and I do mean that with the utmost respect.

For the sake of the NPS and those of you who support it, I support it for you at this time. I’m not entirely certain of its benefits or that it will be implemented properly. Like most strategies, guidelines, and law the benefits are often dismissed when they matter most.

Having been apart of change and implementation for the current California Pain Management Guidelines I’m not naive to opioid prescribing, risks or need.

There are too many guidelines being developed. The CDC, government and state levels. The only people who are going to suffer are those who are labeled with “pain”.

Opioids don’t kill, being irresponsible does. The double-edged sword in under treated pain and prescribing.

Take Our Survey About the CDC Opioid Guidelines September 29, 2015 By Pat Anson, Editor

http://www.painnewsnetwork.org/stories/2015/9/29/pain-patients-take-our-survey-about-cdc-opioid-guidelines

Direct link to Survey

https://www.surveymonkey.com/r/GGJ5ZCH

Your voice matters!

I look forward to the next #NPSChat.

Together, we can..

… And we will.

~Twinkle V.

Executive Board/Advocacy Director powerofpain.org

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

Posted by twinklev

The 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
http://powerofpain.org/mcdowell-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

In 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.

http://www.jotform.us/powerofpain/casting

“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
http://www.jotform.us/powerofpain/adf

Power of Pain: Changes in Family Dynamics
September 01, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/9/1/power-of-pain-changes-in-family-dynamics

Power of Pain: Check Your Medical Bills for Errors
August 20, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/8/20/power-of-pain-check-your-medical-bills

Power of Pain: Tools for Today and Tomorrow
August 04, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/7/31/power-of-pain-tools-for-today-and-tomorrow

Power of Pain: The Benefits of a Positive Attitude
June 25, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/6/24/benefits-of-a-positive-attitude

Power of Pain: Take Charge of Your Pain Care
June 15, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/6/14/decide-your-own-health-outcomes

Power of Pain: There is Great Reason for Hope
June 02, 2015
http://www.painnewsnetwork.org/stories/2015/6/1/there-is-great-reason-for-hope

Barby’s blog

http://barbyingle.com/blog/

Testimonials

http://barbyingle.com/comments/

Awards and Honors

http://barbyingle.com/awards-and-honors/

Media/Presentations

http://barbyingle.com/media/

Barby’s books

http://barbyingle.com/books/

More at: www.BarbyIngle.com

www.burningpain.org
Portal to:

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

COMIC PAIN RELIEF .COM
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.

NERVEmber .COM
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!

PATIENT AWARENESS .ORG
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.

BARBY INGLE .COM
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 .ORG
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.

www.powerofpain.org

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

Posted by twinklev

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 – http://youtu.be/y8-ngc–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 www.powerofpain.org. 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.
Music
“Little Wonders” by Rob Thomas (Google Play • iTunes • AmazonMP3)

RSD / CRPS Limbs Montage – http://youtu.be/nsFs3EHpi-A

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) – http://youtu.be/HAnmVUKVncM

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

Nada hay más surreal que la realidad.

My Month In Review- July 13 – August 14, 2015

Posted by twinklev

My Month In Review- July 13 – August 14, 2015

I spent nearly 8 hours with my mom, dad, and sister-niece July 22, 2015, It was the last day. Mom, Dad. Rosie, my husband Erik and I went up to our daughter Kharisma’s job so they could say “love you”, not goodbye. Erik and I left them at the hotel about 10:50 p.m. that night. They finally arrived from Georgia the evening of Monday, July 13, 2015. We spent that evening together. We also spent the next 2 days together. We parted until we spent another 2 hours together when they arrived for our grandson De’Mantai’s baseball game. We parted again. They stayed with my step brother that week. During that week though mom was able to meet with her brother who she has not seen since the passing of my aunt, her sister in 2003. She was also able to meet up with her sister and her niece who she hadn’t seen since either. I didn’t see her at all that week but I am so glad she was able to see her family, go by the house she grew up in, which also happens to be the same one I did as a little girl from the second grade to the start of high school.

I hope that the time will come again that we can all be together at least one more time. But we know this might have been it. And for this reason, so many wonderful photos were taken to last a lifetime.

I’ve postponed one surgery for another complication.

Our oldest daughter, who turned 27 just a few months ago was put out of work a few days ago for a minimum of 3 months for her Epithelioid Hemangioendothelioma (EHE). It seems to be metastasizing. The several lesions on her liver. One in her kidney, a splenule spleen. Partial collapse of her lungs. Swelling, pain of course, but know what? It’s never over until it’s over.

We are #StrongerThanPain

Working on some exciting projects. Privileged to develop the strategy for the Power of Pain Foundation. Blessed to have people acknowledge my abilities and offer me opportunities to try while acknowledging that minimal time can be spent doing it. Yet, also believing that the minimal allotted availability is wholeheartedly used for the project or another given task.

Assisting in legislative efforts via POPF, SPPAN, and other collaborative efforts to provide information, awareness and hopeful change in matters affecting pain care.

Announcing the West Coast PAIN Summit 2015, Elk Grove, CA – More Info http://powerofpain.org/west-coast-pain-summit on NERVEmber 14, 2015

West Coast P.A.I.N. Summit
Access to Care, Advocacy and Neuromodulation 2015
Hosted by the Power of Pain Foundation and Medtronic Neuromodulation Therapies
Saturday, NERVEmber 14, 2015
2:30-4:30pm
Elk Grove Public Library Conference and Meeting Room
8900 Elk Grove Blvd.
Elk Grove, CA 95624
Elk Grove Library, Elk Grove, CA

Questions: Contact Twinkle VanFleet Director twinkle@powerofpain.org

Our daughter Rikki is doing well as a Coroner’s Assistant. Ozra is thriving in work, goals, his future, and advancement/ promotion in the Sacramento Sheriff’s Department Explorer’s Program leading and teaching others. I’m so proud of all 3 of you.

I did do something without revealing a peep to anyone. I went through the application process on my own, the interview process, and was accepted on another team. It is independent of the Power of Pain Foundation. It is something I have put off for a few years, but had been asked to consider on a personal level by those associated. I’ve been on board since August 4, 2015. I’ll officially be available on August 24, 2015 or there about for this position. It’s not a paid position. An Ambassador for patient relations. It’s providing my knowledge and experiences to other’s who are either considering or are already using the therapy. I will not be providing any professional, medical, or technical answers. I’m very much looking forward to being a part of this team.

I miss my mama. Wednesday, July 15, 2015. 2 days after they arrived. Sitting outside together.

Our Grandson De’Mantai Xayvier (‘Tai) who met his Mimi (Grandma) for the very first time, our oldest daughter, Kharisma, my Mama (center), and our daughter, Rikki. Outside together.

Me, our son Ozra (Kurtis), our daughter Kharisma, and Mama (Melody)

Happy 28th Wedding Anniversary Master!

“When you think you can’t, maybe you already have” ~TwinkleV/rsdcrpsfire

2015 Nomination’s Open for the McDowell Advocacy Award | Power of Pain Foundation

Posted by twinklev

The Power of Pain Foundation presents the Melanie McDowell Pain Awareness and Advocacy Award annually. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy pain conditions. Nominations are solicited in the pain community for people who are making a significant contribution within the field of research, education, awareness, or patient assistance.

Nominations accepted between April 1 and June 30, 2015

More information and to make your nomination’s

visit McDowell Advocacy Award | Power of Pain Foundation.

Past Recipients

2014 – Dominick Spatafora

Mr. Dominick Spatafora is the 2014 recipient of The Power of Pain Foundation’s Melanie McDowell Pain Awareness and Advocacy Award. This is in recognition of his outstanding work and advocacy for people in pain. Mr. Spatafora’s awareness contributions to the neuropathy and chronic pain communities are outstanding. Mr. Spatafora is the president of the Neuropathy Action Foundation (NAF). Dominick founded the Neuropathy Action Foundation because of his commitment to educate the public on what neuropathy is and most importantly to help other neuropathy patients obtain and maintain appropriate individualized care. Dominick is a healthcare consultant and an expert in healthcare administration. He used this knowledge to create advocacy. The NAF which he founded in 2006 which focuses on awareness, education and empowerment. He brings together advocates and patients in legislative days, educational conferences, and news conferences to raise the awareness of the challenges of getting proper care including infusion therapy.

2013 – Paula Abdul

Ms. Paula Abdul is the 2013 recipient of The Power of Pain Foundation’s Melanie McDowell Pain Awareness and Advocacy Award. This is in recognition of her outstanding work and advocacy for people in pain. Ms Abdul’s awareness contributions to the reflex sympathetic dystrophy, lupus, neuro-muscular dystrophy, and chronic pain communities are outstanding. Ms Abdul has participated in television and print interviews sharing her personal story of living with reflex sympathetic dystrophy. She is actively engaged in social media helping to shine a spotlight on improving the quality of life, offer a chance for rehabilitation, decrease the sense of isolation and alienation, and increase the hope our pain population experiences.

2012 – Trudy Thomas

The 2011 McDowell Chronic Pain Advocacy Award is being presented to Trudy Thomas, host of Living with Hope. Trudy demonstrates all of the qualities we are looking for in awarding this honor. Thank you to Trudy for all she does for the RSD and Pain Community.

2011 – Barby Ingle

Barby has been battling a Neurological condition for over 11 years now. Reflex Sympathetic Dystrophy, is a progress Neuro-Autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. As I search for a cure, I have become my own best advocate and work sharing the information so that you can be yours. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, and so much more – I did not give up or give in! I was tested to my limits and realized they are past the boundaries I placed on myself. I had to become the Chief of Staff of my Own Medical Team. If I can do it, anyone can.

2010 – Mary French, RN

Mary French, RN, MSW, LCSW-C is the 2009 recipient of The Power of Pain Foundation’s 2009 McDowell Pain Advocacy Award in recognition of her outstanding work and advocacy for pain patients. The award was presented to Mary on September 12th at the 3rd Annual Comic Pain Relief held at George Mason University Center for the Arts in Fairfax, Virginia. Barby Ingle, Executive Director, said, “The motivation and drive you offer pain patients helps to keep others on track with goals and positivity as they deal with chronic pain issues.”

2009 – Mackenzie Bearup

Ms. Bearup is a 16 year old Reflex Sympathetic Dystrophy (RSD) patient who used her experience and love of reading to help others in pain. She started a book collection at Murphy-Harpst Children’s Center in Cedartown, NJ for their new library. Mackenzie knew that she was helped through her pain by reading books and thought that she could help other children who are going through unbearable pain of their own. She set out to collect 300 books for this local children’s center and in 2009 turned this project into a non-profit charity, Sheltering Books. Since she began just a few years ago she has collected 38,000 books.

2008 – Dale Lehn

“If you have chronic pain, after talking to clinical people all the time, the issues seem to go on and on…you feel you are always explaining yourself. But if you talk to someone else with chronic pain there’s an immediate recognition, a correlation, a knowing that you’re talking at a level you both understand. For people who have chronic pain every day of their lives, like I do, it’s really freeing to speak with someone you don’t have to explain everything to—someone who already knows exactly where you’re coming from. The people I work with also become honest with others about their pain. In dealing with pain, like dealing with alcoholism, shame often plays a big part of who you are because you are not happy, joyous, and free. Many times, people in pain will not be honest with their doctors and loved-ones. But when I work with people, sometimes they’ll say, ‘I’m doing fine.’ When I ask them, ‘Is that really how you feel,’ they usually laugh and say, ‘No, this is what’s going on….’ I encourage them to be that open and forthcoming with others.” – Dale Lehn, Founder of Chronic Pain Anonymous in 2004.

2007 -In memory of Melanie McDowell

Melanie McDowell

Melanie was an RSD patient and advocate from 1994 to 2006 when she passed away. Her biggest hope was that other patients would get timely and proper care. She was involved in many RSD awareness projects to promote better care for those with RSD and other chronic pain conditions. In her Memory POPF carries on the work that she was so passionate about.

Power of Pain Foundation recognizes the value of every person who makes up the pain community. We are guided by our commitment to excellence, leadership and patient empowerment. We demonstrate this by:

* Providing educational resources for physical and emotional care

* Advancing excellence in awareness of the over 150 conditions involving chronic nerve pain and what patients are faced with on a daily basis

* Strengthening our relationships with hospitals, pain clinics, pharmaceuticals, support groups and our pain community

* Demonstrating social responsibility through the use of our resources. The commitment of volunteers, physicians, community partners and friends to our mission, permits us to maintain a quality presence and tradition of caring, which are the hallmarks of the Power of Pain Foundation.

www.powerofpain.org

Prescribing Task Force Meeting | April 13, 2015

Posted by twinklev

Prescribing Task Force
The Medical Board of California
April 13, 2015

I’ve been apart of this Prescribing Task Force since it began. These are the highlights of the meeting as it pertains to current affairs.

Refer to UStream MBC 4-13-2015 (98:02) Monday at 9:52 a.m
http://www.ustream.tv/recorded/61075030

Jason Smith- Generation Lost
Jason’s story begins at 13:00 of MBC 4-13-2015 (98:02) Monday at 9:52 a.m.

Mr. Smith begins his story by showing us photos of what a drug addict doesn’t look like, he immediately tells us that he abused the system 10 years ago. He say’s we have a preconceived notion of what a junkie looks like as he flips through slides of street bums and obvious users in dirty clothing in underground structures. He tells us that when he was 17 years old he became hooked after a car accident. He shares how he was put on Fentanyl, Norco and Soma. He believes his addiction started from Fentanyl. He said prior to the accident he was never interested in a drug “but when this hit my system, don’t get me wrong, I loved it”.

He was never honest with his doctor because he was worried his doctor would cut him off. He does say now, he has to take personal responsibility. He says his doctor didn’t know any better that he was just trying to keep him out of pain.

Additional Commentary-

I appreciate Mr. Smith’s truthfulness to come forward and tell his story. It would be honest if more patients did the same. We know they are out there. I am glad he is alive to tell his story and help the drug abuse problem. However, I can’t hold back. It is because of patients like this who make patients like me look bad. It is doctors like his that were duped that will second guess me now. I say me because I represent many pain patients who are falsely accused and judged for someone else’s deceit.

Jason appears friendly, handsome, not what society perceives an abuser to be. He’s right about the photo’s he’s shared.

Abusers are every day people, in any community, wealthy, poor, religious, strong, weak, and of any race. It is said that certain populations are at higher risk than others. We hear that over and over again. Don’t be fooled! They are in every class of people. Most dress quite well, are physically beautiful and are not just the poor folk, they are corporate managers, they are of the populations we don’t care to consider. If you think their aches and pains are more relevent then some one elses who might be on medi-cal you are misguided by your own misconceptions.

There has to be patient provider communication. There needs to be patient assessment, risk stratification, and screenings for abuse. Labeling a pain patient a potential abuser without merit because of other people who have used and abused our doctors and themselves is unjust.

Overdose means a person didn’t take a medication as prescribed, mixed it with alcohol, or another substance. Generally addiction and abuse occurs when mis using, again not taking as prescribed. Where is the personal responsibility in all of this? It is because of patients who do these things that contribute to the negative stigma and impede in the access to care and analgesic management to responsible chronic intractable pain patients. Much more work needs to be done not just in curbing abuse, but by making sure access to proper pain care on a case by case basis in ensured.

I admire Jason for sharing his story. His honesty actually brings truth and enlightenment to what many of us have been saying all along. You’re looking in the wrong place.

Dr. Rupali Das, Executive Medical Director of the Division of Workers Compensation spoke on Workers Compensation Guidelines, prescription drug misuse and overuse, and the multidisciplinary approach that the guidelines recommend. Treating providers are required to use the Evidence Based Treatment Schedule (MTUS). Opioid Treatment Guidelines- Refer to 57:00 of MBC 4-13-2015 (98:02) Monday at 9:52 a.m. http://www.ustream.tv/recorded/61075030

Dr. Das’ intentions are decent, yet early treatments such as acupuncture, physical and occupational therapy, yoga and other interventional treatments are more often than not, denied. This leads to the progression of disability and in some cases, irreversible disease. There is no wean down program when determining a modification of medication in many situations. Injured worker’s are abruptly halted leaving them in withdrawal. Even if a patient isn’t taking an opioid medication, withdrawal is dangerous. Injured worker’s continue to deal with denials and delays.

Agenda

1. Call to Order
2. The Lost Generation – Jason Smith
3. Update from the Prescription Opioid Misuse and Overdose Prevention Workgroup –
Julie Nagasako, California Department of Public Health
4. Update from Division of Workers Compensation – Rupali Das, M.D. Depart of Industrial Relations
5. Update on Controlled Substance Utilization Review and Evaluation System (CURES) –
Kimberly Kirchmeyer
6. Discussion on Statewide Best Practices
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Twinkle VanFleet
Executive Board Member/Advocacy Director
Power of Pain Foundation http://powerofpain.org

In attendence with
State Pain Policy Advocacy Network (SPPAN) Fellow Leader’s
Scott Clark of the California Medical Association (CMA) http://www.cmanet.org/
Maggie Buckley of the Pain Community http://paincommunity.org/

Nicole Hemmenway, U.S. Pain Foundation.

Power of Pain Foundation Co Sponsor Assembly Bill 623

Posted by twinklev

Yesterday 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 Unveiled

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

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.

Press Release Article Tuesday, March 24, 2015

Legislation to Curb Prescription Drug Deaths Unveiled by Assemblyman Jim Wood

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

Power of Pain Foundation | Policy Efforts | PatientAwareness.org

-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

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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.

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.

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.

Power of Pain Foundation- ADF and Access to Care

Posted by twinklev

ADF

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.

WHAT IS YOUR CAKE? | Barby Ingle

Posted by twinklev

WHAT IS YOUR CAKE?

Barby Ingle, President

Power of Pain Foundation

Author * Advocate * Motivational Speaker

480-882-1342 barbyingle@powerofpain.org

Movie Info:

http://cakemovie.net

https://twitter.com/CAKEtheMovie

https://www.facebook.com/cakemovie?ref=hl

What is CAKE? CAKE is something that you can’t do because you are in pain but wanted to accomplish. When I started to watch this movie, I came in with biases of people in the pain community saying how it was all about addiction and not much on chronic pain. Those people had not yet seen the film. So, I got out may paper and pen and decided to take notes. I thought this movie was a great representation of what I see and hear from millions of pain patients across the United States. This movie is one of the best, in-depth depictions of what we deal with on a daily basis as patients. Here is what I saw in the movie.

I saw the reality of what I have been living with since September 26, 2002 after an auto accident that led me to have no choice but to live with chronic pain. The main character, Claire shows the challenges of living with pain. Her symptoms matched many of the symptoms that I have dealt with on a daily basis. With not only showing the pain that sometimes makes you scream out. They also did a great job showing the loss of energy, balance -coordination issues, body temp regulation problems, depression & anger, dystonia, loss of appetite and vomiting, memory issues (reminders about reminders), and sleeping problems.

The movie also gives a great perspective on some of the treatment options that are available. Claire went through so much to get out of pain, but to no avail. She had to find ways to cope. They showed a wide variety from invasive surgery, medications (not just opioids) but other medication, and aqua therapy. They showed less invasive tools that can help with the coping of life with chronic pain; quiet/dark room or house, music therapy, and even turning to other substances like alcohol.

This movie shows a woman who is processing her own chronic pain from physical injuries, but takes it even further. The script writer was cleaver enough to have the character Claire use of her friend who committed suicide to help process the situation and tell her story (it was easier for us as viewers to follow verses a woman talking to herself, it put a face to the story of the person who committed suicides story). I can say for myself losing over 50 friends in the past 12 years who were living in pain I know how much of a struggle this is and how delicate it is to navigate with those of us still living and fighting this daily battle. We are in a way relieved that our friend is out of pain, but at the same time sad that we are here on earth – left behind. We see how great it would be to be out of pain for eternity, but know that we have a purpose here and it is not our time to go.

CAKE reminded me of a few important lessons. First, you can’t get better by working harder, you have to work smarter. We need to figure out how, where and on what we want to spend our energy pennies[i]. Second, people who don’t live in pain want to know how we do it. We typically say moment by moment, or I don’t know how I do it. We find a way. We negotiate with ourselves to do what must be done, what needs to be done. Does that mean we get to do all we want to be done? No. Does that make us less of a person? No. Thirdly, people in pain take less life for granted. The closet scene where she takes out only a little bit only to make a messy pile outside the closet. That was a step. That was an accomplishment in the daily life of a chronic pain patient. We are not asking for people to save us, we are working to save our energy pennies for what is important in life while still maintaining a life of whatever sort we can muster up.

WHAT IS YOUR CAKE? | Barby Ingle

Posted by twinklev

What is CAKE? CAKE is something that you can’t do because you are in pain but wanted to accomplish. When I started to watch this movie, I came in with biases of people in the pain community saying how it was all about addition and not much on chronic pain. Those people had not yet seen the film. So, I got out may paper and pen and decided to take notes. I thought this movie was a great representation of what I see and hear from millions of pain patients across the United States. This movie is one of the best, in-depth depictions of what we deal with on a daily basis as patients. Here is what I saw in the movie.

This movie shows a woman who is processing her own chronic pain from physical injuries, but takes it even further. The script writer was cleaver enough to use of her friend who committed suicide to help process and tell her story (it was easier for us as viewers to follow verses a woman talking to herself, it put a face to the story of the person who committed suicides story). I can say for myself losing over 50 friends in the past 12 years who were living in pain I know how much of a struggle this is and how delicate it is to navigate with those of us still living and fighting this daily battle. We are in a way relieved that our friend is out of pain, but at the same time sad that we are here on earth – left behind. We see how great it would be to be out of pain for eternity, but know that we have a purpose here and it is not our time to go.