Living with HOPE Radio Show: Re-Airs Live- NERVEmber 19, 2015

Posted by twinklev

The Living with HOPE Radio Show with Host Trudy Thomas will re air live NERVEmber 19th, 2015 on the Body, Mind, and Spirit Network. Due to health reasons she took leave in January and has been working toward returning.

I’ll be re-joining Trudy as co-host each Thursday at 2:30 p.m PST/5:30 p.m EST with a 30 minute guest speaker, or to review, or to discuss current affairs. The chat room will be available for your combination of listening and chatting pleasure. The call in number for the show is (929) 477-3203.

Please stay on the line to listen live or press 1 to speak to the host.

Living With Hope: Guest Twinkle Van Fleet

Together, we’ll bring you a diverse array of treatment options, healing essentials, technology, inspiration, activities, and living with hope.

Since 2007, Trudy’s mission has been to promote awareness for the millions of people who struggle with chronic or intractable pain. To let people know that they are not alone in their journey and that there is life after diagnosis. Trudy discusses various therapies and the emotional struggles that can arise with a chronic incurable condition such as RSD/CRPS and coming out on the other side. She strives to empower, inform and educate.

If you have a topic of interest or would like to request guest consideration and have any questions, Please, contact Trudy at: goldfield_nv@hotmail.com

With “Topic of interest” in the subject line to propose a topic. “Guest speaker” to be considered as a guest and “Question” to ask your question. Please provide your proposal or question for either. This helps filter email and requests to better serve you.

Hope to see you there!

In Memory of Mary LaBree – An Original RSD Advocate

Posted by twinklev

One of our original RSDS Advocates, Mary LaBree, passed away on October 15, 2015 due to complications from Reflex Sympathetic Dystrophy (RSD). Mary exemplified commitment to the RSD community for over 3 decades. As the Director of the New England RSDS Coalition since 1990, Mary sought to educate and bring awareness to the public and private sectors for the disease that was virtually unheard of back then. Originally from Leicester, Massachusetts, she was formally educated at Worcester State University in Worcester, Massachusetts.

Mary secured the JULY Proclamation for RSDS To urge all of the citizens of the Commonwealth to take cognizance of this event and participate fittingly in its observance. Given at the Executive Chamber in Boston, the twenty-fourth of June in the year two thousand and eleven, and of the Independence of the United States of America, the two hundred and thirty forth.” Massachusetts Bill # 5938

She worked both locally in Massachusetts and Nationally.

Mary formed and lead seminars, attended others, developed awareness events, distributed information and educational materials. She spoke with patients, caregivers, physicians, hospitals, insurance companies, fellow educators, universities, other peer groups, and those with an interest to learn about Reflex Sympathetic Dystrophy. She was involved with grants, research and fundraising.

When Mary LaBree began advocating for RSD in the 1980’s the term Complex Regional Pain Syndrome hadn’t been created. While other names had been used previously to describe Reflex Sympathetic Dystrophy (Syndrome) it was most often referred to as RSDS.

In 2012, she reached out to me and a friendship formed. We shared phone calls, messages and correspondence by snail mail. Mary sent me a copy of the photo of she and other’s of the original signing of her proclamation and a copy of the verbiage used to secure her proclamations. I’m privileged to know what Mary looks like. For now, I’ll not share those, nor have I ever. She shared with me 30+ years of everything. How she started, how she educated, how other RSD organizations began, her children, grandchildren, colleagues, the strength it takes to endure; not just in living with pain, but being a part of it.

If you pray, why worry… If you worry, why pray?

I had plans to meet her in person twice. The first time she had to return home early. I was supposed to meet her again toward the end of October or into mid-November. I had just spoken to her less than a week before her passing.

October 8

10/8, 4:04pm

Mary LaBree

I was in the hospital yesterday, I had an accident with my wheelchair when I tried to back it up ( standing in front of it. ) (Stupid me )when I pushed the button to back it up.. I pushed it the wrong way..And ran over my LEDs from the ankles to the knees. I was really blessed when the ER Dr. Asked what other problems did I have, & when I explained CRPS He said oh Chronic Regional Pain Syndrome , I said yes. He treated me with kindness & care. I’m going to send him a thank you card. He was really kind. You don’t always find a kind caring Dr..pls pray for me to recover. I have a lot of CRPS work to do. I will be leaving for CA in a few weeks. Ty.M

October 9

10/9, 5:22pm

Twinkle Wood-VanFleet

You’re always in my thoughts and prayers for your health, and your work, Mary. I do hope to meet you in November. xx

October 10

10/10, 10:07pm

Mary LaBree

Hi, Yes I’m looking forward to meeting you as well. I leave Oct 23 on. Friday. A lil less then 2 wks.I will call u sometime on the weekend after I arrive, hugs & lots of love.M

October 12

10/12, 7:04pm

Mary LaBree

I’m sorry I had a mistake that I didn’t want to have a group pls forgive me, as I pressed the wrong thing, & didn’t realize it until someone told me.

The next message on Oct 12, I missed due to being away and my IM being flooded and then she was gone. I was on the road to and from the Stanford Transplant Clinic for our daughter on the 15th and in the Emergency Department on the 16th due to my cervical spine. Trying to save the puppies life all in between.

The last message was in reference to an accidental group IM.

I had been wondering if she would want to make the plans to meet at the NERVEmber, West Coast Pain Forum for Power of Pain Foundation on November 14th. All I knew for certain is she planned to be here in Northern California on the 23rd of October and would call me.

Mary LaBree Melanie McDowell Awareness and Advocacy Award Nomination 2015 Slide property of @powerofpain

Permission granted and sent from the Power of Pain Foundation to share in Mary’s memory. Melanie McDowell Awareness and Advocacy Award Nomination 2015

I wish she would have received more nominations, but mine was the only one for her. She was most deserving.

We never know for certain where our conversations go even when we chit-chat on the phone or when we think they are in confidence. I don’t know what Mary ever spoke of me to others, but I know that she must have believed in me enough with what she did share with me to know I would keep it to me and if she didn’t know for sure when she told me she knew as time went on because I’ve never told it.

She asked me sometime in 2013 to consider being trained by her for her Coalition and new endeavors. While I was most honored, I respectfully declined as I was already committed to Power of Pain.

Our conversations also consisted of but weren’t limited to life, color, ethnicity, race, the olden days, differences, equality, change and today. She shared with me uncertainties about people, places and things, and I eased her in certain fear and prejudices. Please don’t misunderstand me, I’m not at all implying Mary was prejudice, in fact, she’s not, though conversations were simply sometimes deep. Mary listened and she learned. She watched, listened to gossip, dismissed it, listened more, read, picked it apart, put it together, and ultimately decided for herself. She wasn’t afraid to speak her mind or share a maybe, what if, what do you think or did you know.

I’m humbled to have been accepted, acknowledged, taught and even loved by her.

Mary was so proud of the New England RSDS Coalition, she was thrilled that the healthcare community was finally beginning to know what RSD (CRPS) is. She was pleased that patients had informational materials to seek out and be provided. She was happy that educational events were provided free to the public.

She told me the story behind July and why her proclamations are for the month of independence and not November. As I stated Mary began educating RSD over 30 years ago. July was chosen for freedom, freedom from pain. It wasn’t until many years later that a national color evolved, and then our month of recognition. Mary was grateful for her closest friends. I know she loved her beautiful friend, advocate and poet, Jane (Gonzales).

I prayed for her health and I prayed for her to achieve her life’s work, her mission to create awareness and educate on RSD, her purpose to continue doing so, and her hope for our future.

You did Mary! You really did! You achieved them all to the last breath.

And I thank you!

With gratitude, hugs and lots of love,

Miss you, won’t forget you,

Mary’s Facebook page: https://www.facebook.com/messages/mlabree1

Lets not forget the ones who started the path that gave way for us to do what we do. ~Twinkle V.

On behalf of all of us this one’s for you!

(Originally written at the end of October and updated today)

Reference to Mary’s favorite quote shared above. The above is shared the way she said it.

“If You Pray Don’t Worry… If You Worry Why Pray” sermon by Levi Wright

A Call for Action- 2016

Posted by twinklev

A Call for Action 2016

By Twinkle VanFleet

‎Since 2012, the estimated rise in addiction and opioid related abuse was an astounding 26.4 to 36 million people throughout the world. The accidental overdose of prescription related deaths were 4 times the amount of similar deaths in 1999.[1] According to the National Survey on Drugs Use and Health, 70 percent of all people who abused prescription analgesics got them from friends or relatives while 5 percent got them from a drug dealer or the internet.[2] While most of the focus has been on patients abusing their medications we must not lose sight that the majority of these patients take their medication as prescribed. The negative innuendos influence the positive conclusion that long-term opioid treatment does in fact give quality of life to not only cancer patients, but non-cancerous chronic pain patients whose pain cannot be controlled any other way.

In an effort to deter abuse and/or misuse in patients, family, friends or associates, decrease the value in street sales, reduce the drug epidemic in certain populations, abuse deterrent formulations (ADF) are beneficial step forward in the diversion of the prescription drug issue.

OxyContin, Nucynta ER, Opana ER, Oxecta, Embeda, and Targiniq each contain abuse deterrent formulations (ADF) or tamper deterrent formulations (TDF). The most common form of abuse is by swallowing the medication. Other forms are chewing, swallowing, snorting, ingesting, inhaling, and injecting for the fast acting euphoric effect. Naloxone is a narcotic that reverses the effects of other narcotic medicines and can be used to treat drug overdose in emergency situations. Naltrexone hydrochloride blocks the effects of opioids by competitive binding (i.e., analogous to competitive inhibition of enzymes) at opioid receptors. Naloxone and Naltrexone are both opioid antagonists and each conclusively block the body from experiencing the opiate and related endorphins. This occurs by binding of the opioid receptors with higher than affinity than agonists, but do not activate the receptors.

TDFs will protect people who decide to modify the medication’s original form by removing the opioid for prompt use and abuse. Otherwise, extraction acts quickly and the time it takes to produce its effects can be immediate.[3]

ADF’s contain ingredients for safer distribution. Patients would continue to receive the management of pain and physicians would be less likely to stop providing access to pain care.

Not all patients should be diverted to ADF or TDF by their physicians. Patient Evaluation and Risk Stratification should be utilized to mitigate potential risks. Pharmacies and insurance companies should not be allowed to replace an Abuse Deterrent Formulation prescription opioid for a similar generic non ADF opioid. The prescription drug abuse issue has brought an adverse impression onto honest patients with incurable and intractable chronic pain syndromes and diseases and has left some pain professionals feeling perplexed.

With the continued development of these safer opioid medications we are contributing to the future of better health and pain care practices. Pain patients must remain a high priority in the midst of the current and ongoing concern that prescriptions will likely be misused or abused. It is imperative that patients be assessed on an individual basis and not as an assumption to the status quo.

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 drugs and opioid abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic intractable pain patients in mind.

Patients are being labeled for their chronic pain identity. In the last year or more they have not been receiving their medication management either by their physicians, insurance or pharmacy. In one instance, I was informed that a patient with no history of abuse was being referred to what seemed a drug rehabilitation program in order to get her medication. If she did not comply, she would not receive.

Another gentleman, previously prescribed Suboxone for pain management, now cannot receive opioid managed care because the information in his Prescription Drug Monitoring Program insinuates prescription drug abuse.

Steps need to be taken to ensure that notes are added to the PDMP/CURES database on individuals. Suboxone itself is only an implication without verification for what the medication was prescribed for.

On behalf of those who need, not want, but need medication to sustain quality of life, I call upon our legislative leaders to be proactive in this area. Help stop the abuse without penalizing those of us who are able to live at least a modicum of life due to the effectiveness of these prescription pain medications.

Think about it, as if you’re needing to… no! really needing to, begging to, ease your Mama. Close your eyes and imagine.

I call on you to not make any compromises for a standard not yet met.

America’s Addiction to Opioids: Heroin and Prescription Drug Abuse. Nora D. Volkow, M.D. May 14, 2014.

Senate Caucus on International Narcotics Control. NIH National Institute on Drug Abuse

http://www.drugabuse.gov/about-nida/legislative-activities/testimony-to-congress/2014/americas-addiction-to-opioids-heroin-prescription-drug-abuse

2. Prescription Drug Abuse. Office of National Drug Control Policy

http://www.whitehouse.gov/ondcp/prescription-drug-abuse

3. Tamper-Deterrent Opioid Formulations: Who Needs Them, and at What Cost? Robert Twillman, PhD. Pain Practitioner

http://www.aapainmanage.org/resources/articles/tamper-deterrent-opioid-formulations-who-needs-them-and-at-what-cost/

Twinkle VanFleet, Sacramento resident, pain patient, Executive Board Member and Advocacy Director for the Power of Pain Foundation.

Written Thursday, ‎December ‎04, ‎2014

Updated Wednesday October 14, 2015

#painPOP – Do You Have The NERVE To Be Heard?

Posted by twinklev

I have the nerve to be heard, do you have the nerve to be heard? POP for PAIN with hashtag #painPOP by the Power of Pain Foundation. We invite you to take the challenge or donate to either spread continued awareness and advocacy efforts or assist in educational funding for nerve pain diseases, syndromes and conditions.

Our balloons are safe for both you and the environment. Instead of a balloon release, our #painPOP offers you the opportunity to be involved even with physical limitations. We considered the noise in the pop, we considered those whose hands are not well and we considered the air.

We have taken into account those with PTSD from wartime. We would not wish you harm in any way, nor would we have you pop to startle you. No one is forced to do either. This is meant for fun, a distraction from our own pain; enlighten pain in others, and to promote understanding, compassion and hope. I participated in the ice bucket challenge last year and my body had a fit, but for ALS sufferers, I did it. I don’t have ALS, I have CRPS, CSA, OSA, other sleep disorders, Cheyne Stokes, Hypertension, Anxiety disorder, DDD, Arthritis (Juvenile Arthritis), PTSD and various extras. Pain is hard, not being able to breathe evenly is hard, having a brain that doesn’t send the proper signals to the muscles that control breathing is hard, not being able to stay awake is hard and not being able to sleep is hard, being on my legs is hard, but we don’t always have to be hard on ourselves.

I was challenged in the #painPOP by Power of Pain’s Executive Director Ken Taylor. Of course, I accepted, even though I’ve been quite unwell for weeks now.

If we tell ourselves we can’t participate in anything due to the setbacks in pain then we never will.

Here’s how it works:

Instructions
If your balloon has a POP (Power of Pain) logo, be sure to have it facing the camera.
To the camera say: I have the NERVE to be HEARD! (pop the balloon) do YOU have the NERVE to be HEARD! hashtag #painPOP participate or donate to powerofpain.org
Or if you want to challenge someone:
I have the NERVE to be HEARD! (pop the balloon) I challenge (state their name’s) to Have the NERVE to be HEARD! hashtag #painPOP participate or donate to www.powerofpain.org

You can have fun with it. Be creative. We also want you to be safe and content.

We look forward to sharing your submissions and celebrating with you.

Our mission

Power of Pain Foundation recognizes the value of every person who makes up the chronic 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 pain awareness of the over 150 conditions involving chronic pain and what patients are faced with on a daily basis * Strengthening our relationships with hospitals, pain clinics, pharmaceuticals, support groups and our chronic pain community * Demonstrating social responsibility through the use of our pain resources. The commitment of volunteers, physicians, community partners and friends to the Power of Pain mission, permits us to maintain a quality presence and tradition of caring, which are the hallmarks of the Power of Pain Foundation.

We hope that you participate in our #NERVEmber projects and if you are unable due to any restrictions that instead you share someone who has so that together we can fulfill the mission of the Power of Pain Foundation to give a voice to the communities that need it most.

#NERVEmber is International Nerve Pain Awareness Month (including RSD, CRPS, Diabetes, and more). Each day during the month of NERVEmber the @PowerofPain Foundation will present an awareness task that we can all perform!

This year we are also giving away over $1000 in prizes available for everyone who registers to participate and use the hashtags, complete tasks, host or attend an event. The more you participate in OFFICIAL #NERVEmber events, the more chances you have to win! Check out all events going on in our NERVEmber Event Calendar.

Find out more at: NERVEmber.org

A list of diseases, syndromes and conditions that involve nerve pain as a symptom.

AUTONOMIC*

The autonomic nervous system is a control system that acts largely unconsciously and regulates the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. This system is the primary mechanism in control of the fight-or-flight response and its role is mediated by two different components.

AUTOIMMUNE**

Autoimmune diseases arise from an abnormal immune response of the body against substances and tissues normally present in the body (autoimmunity). This may be restricted to certain organs (e.g. in autoimmune thyroiditis) or involve a particular tissue in different places (e.g. Goodpasture’s disease which may affect the basement membrane in both the lung and the kidney).

OTHER

Other types of neuropathy conditions include; toxic, metabolic, trauma, compression entrapment, infectious, and congenital hereditary. These conditions are typically treated by multiple types of medical professionals. The goal of treatments should be to understand the physiological system of the condition and then working to prevent permanent painful neurological transformations.

4 Q Deletion Syndrome
Alcoholism*
Alexander Disease
ALS Lou Gehrig’s Disease
Arachnoiditis**
Behcet’s Disease**
Bell’s Palsy
Blepharospasm
Bloch-Sulzberger Syndrome
Burning Mouth Syndrome**

Cancer Neuropathy*
Carpal Tunnel Syndrome
Causalgia**
Charcot-Marie-Tooth Disease
Chemical Injury Neuropathy*
Chiari Malformation
Cranial Neuritis*
Diabetic Neuropathy*
Dysautonomia*
Endometriosis
Fabry’s Disease

Fibromyalgia**
Friedreich’s Ataxia
Guillain Barre Syndrome**
Herpes Simplex
HIV/AIDS**
Interstitial Cystitis
Leprosy**
Lupus**
Lyme disease**
MonoNeuropathy*
Multiple Sclerosis*
Neuro Muscular Dystrophy**

Optic Neuritis**
Peripheral Neuropathy*
Polyneuropathy**
Post-Surgical Pain
Pressure Palsy
RSD / CRPS**
Shingles*
Shoulder Hand Syndrome
Sjogren’s (“SHOW-grins”)**
Tarlov Cyst Disease
TMJ
Trigeminal Neuralgia**
Vestibular Neuritis*

Check back for more information on these conditions soon

Central Cervical Cord Syndrome

Central Pain Syndrome

Cerebral Palsy

Chemical Injury Neuropathy

Choreoacanthocytosis

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

Craniosynostosis

Cushing’s Syndrome

Brachial Neuritis

Ehlers Danlos

Electric Discharge

Failed Back Syndrome

Neuralgia Post-Infectious

Neuro Inflammatory Disease

Toxic Homeopathy

Vasculitic Neuropathy

See http://powerofpain.org/conditions/

Help us share and make aware

Hashtags (Please be sure to use the hashtags in their entirety)

#painPOP

#NERVEmber

#PaintTheWorldOrange

#IHaveTheNerveToBeHeard

#DoYouHaveTheNerveToBeHeard

Check out the video’s of those who’ve been challenged already, and those who’ve accepted at: https://www.facebook.com/powerofpain

Twitter- @powerofpain

https://twitter.com/powerofpain

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

Posted by twinklev

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.

Review

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

https://rsdadvisory.com/2015/08/31/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

https://rsdadvisory.com/2015/09/03/pain-awareness-month-feature-2-trudy-thomas-living-with-hope-radio-show/

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

https://rsdadvisory.com/2015/09/07/pain-awareness-month-2015-feature-3-shane-schulz-arisen-strength/

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

https://rsdadvisory.com/2015/09/12/pain-awareness-month-2015-feature-4-power-of-pain-foundation/

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

https://rsdadvisory.com/2015/09/15/pain-awareness-month-2015-feature-5-sheila-purcell-united-kentucky-pain-care-action-network/

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

https://rsdadvisory.com/2015/09/19/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
http://theacpa.org/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

http://theacpa.org/uploads/Pain_Awareness_Month_History.pdf

For more information

The American Chronic Pain Association (ACPA)
http://theacpa.org/

The American Chronic Pain Association (ACPA)
Partners for Understanding Pain
http://theacpa.org/Partners-for-Understanding-Pain

Pain Awareness Toolkits
http://theacpa.org/Pain-Awareness-Toolkits

You can also find the American Chronic Pain Association on:

Facebook-
https://www.facebook.com/pages/The-American-Chronic-Pain-Association/113362482021895

Twitter-
https://twitter.com/TheACPA
@TheACPA

YouTube-
http://www.youtube.com/user/TheACPAChannel

Pinterest-
https://www.pinterest.com/theacpa/
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.

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

Posted by twinklev

Dawn R. Scott was only 20 years old in 1998 and a junior in college when she was first diagnosed with Epithelioid Hemangioendothelioma (EHE). The primary site of her EHE was in her right subclavian vein which had metastasized to her lungs. She had about 20 tumors bilaterally. Dawn’s primary surgery was extensive, enduring four rounds of rough and intense chemotherapy. The primary tumor was completely removed via surgery and the lung tumors have been stable since August of 1998. Dawn received her undergrad in 2001 and went on to law school. She graduated again in 2005 and has been practicing law in Wyoming for the last 10 years.

In April of 2013, she met a young woman named Tory who had angiosarcoma. Tory was the first person Dawn met in person that had anything similar to EHE. Tory invited Dawn to join an angiosarcoma group on Facebook. The group joined people from all over the world. An eye-opening experience. During the summer of 2013, Dawn connected with Vlad in a chat forum, his brother, Dmitri, had just been diagnosed with EHE. They talked on the phone and in turn, his mom Jane was introduced to her. Tory passed away in September of that same year and from there Dawn was compelled to start a Facebook group for epithelioid hemangioendothelioma.

“Never did I dream that we would grow to be what we have become and I am so happy that we have one another.” ~Dawn Scott

Jane joined Dawn shortly after she started the group, and gradually they gained key members such as Guy Weinberg (CRAVAT) and Gayla Loller. Cynthia Lee, who had started the HEARD registry years ago before was soon on board, too. Halt EHE thru Analysis, Research and Discovery (H.E.A.R.D.). Jane alerted the group to Dr. Rubin’s work, field of research, study and fundraising for EHE.

Brian Rubin, MD, PhD, is certified by the American Board of Pathology in anatomic pathology. He specializes in the diagnosis of diseases of bone and soft tissue and is an expert in the diagnosis of sarcomas. He’s a world-renowned pathologist and medical researcher who’s brought new hope for patients diagnosed with Epithelioid Hemangioendothelioma (EHE). Dr. Rubin is at the Cleveland Clinic.

“I may have “created” the group but it is truly all of ours and we’d be nowhere without the dedication of so very many.” ~Dawn Scott

Epithelioid Hemangioendothelioma (EHE) Cancer Support Group
https://www.facebook.com/groups/EHEcancer/

This group is for epithelioid hemangioendothelioma (EHE) cancer fighters/survivors, caregivers, friends, and medical professionals. Per Wikipedia, epithelioid hemangioendothelioma (EHE or eHAE) is a rare tumor that typically strikes both women and men who are in their 20s through their 40s. EHE is a vascular cancer, often growing in the liver, lungs, and within the veins of arms and legs. However, it can be found in other locations throughout the body, including the mediastinal region of the chest, in skin and other organs, and also in bones. The prognosis varies for those diagnosed, with many living successfully with the disease while others do not survive.

What is universal is that EHE fighters/survivors are scattered across the globe, and often never have the opportunity to connect with someone else who is fighting the same disease. This group hopes to change that! We want to be a source of support for those fighting the disease as well as those who love them. We also want to raise awareness of this rare form of cancer and advocate for a cure while being a source of knowledge and resources. You do not have to fight this battle alone, we all fight together!

This FB group reflects numerous positive steps that are being made in the awareness, identification, and treatment of EHE. Please check out the links at the top of the page for additional information such as the status of research breakthroughs made by Dr. Brian Rubin at Cleveland Clinic; fundamental information about EHE from CRAVAT (Center for Research and Analysis of VAscular Tumors) Foundation; and of course, PLEASE take a moment to register your information at our new EHE patient registry.

NEWLY DIAGNOSED? Please click on this link: http://www.cravatfoundation.org/newly-diagnosed/ to find key information that will be helpful. Our members bring diverse experiences and information to this group. Please remember that postings on this site are NOT MEDICAL ADVICE and should not be taken as such! Your doctor or doctors should always be the final authority on your treatment measures, supplements, etc. However, we encourage you to educate yourself about this disease, possible treatments and to ask questions in order to have open and honest conversations with your doctors.

Description written by and is the property of Epithelioid Hemangioendothelioma (EHE) Cancer Support Group.

Leadership Team
Dawn R. Scott, Jane Gutkovitch, Gayla Loller, Guy Weinberg, Cynthia Lee, and Jono Granek.

(Closed Group)

Epithelioid hemangioendothelioma is a rare and devastating vascular sarcoma that affects between 100 and 200 people, mostly young adults, each year in the United States. The cancer may arise as a solitary lesion but more commonly presents with metastatic involvement, usually in the liver and lungs. When confined to soft tissue, mortality from epithelioid hemangioendothelioma is between 13% and 18% but increases dramatically to 40% and 65% when it is found in the lungs and livers, respectively. Although localized epithelioid hemangioendothelioma can be surgically resected, currently there is no effective therapy for systemic disease. And because the cancer is so rare, public funding for research is scarce, making the development of targeted therapies difficult.

Citation: Unraveling the Mysteries of Epithelioid Hemangioendothelioma
A Conversation With Brian P. Rubin, MD, PhD By Jo Cavallo, February 10, 2015, Volume 6, Issue 2

See full article below

As some of you may know by now, Kharisma’s Journey hasn’t been a simple one. Since my post February 4, 2015, so much more has been revealed by my own discovery. Through my daughter’s medical records, I learned it’s not just her liver that’s affected, she also has a lesion on her kidney, an accessory spleen (Splenule) and other abnormalities. I highlighted these findings for her appointment less than a month ago. She’s not received any care the last 7 months, we’ve tried, but to no avail. At this last appointment she was put out of work for a minimum of 3 months. This was an emergency appointment scheduled with her primary after her dad took her to the ED for severe pain and she was dismissed without care. 2 weeks later, she finally seen a Gastroenterologist specializing in the liver, and was immediately scheduled for an Endoscopy 2 days later. Yesterday, we got word that Standford Medical Center in San Francisco received an urgent request from our daughters new doctor. They called to schedule an appointment for next Thursday, September 24, 2015 to begin the process for a liver transplant. It’s a consultation visit to get her on the National Transplant Waiting List. I’ve already looked into being a living donor for her. I had part of my own liver removed in July of 2013. Hepatic Hemangioma with small portions of attached benign hepatic parenchyma. Several benign masses that were only discovered as a result of a second Gall bladder surgery. Hemangioma is made up of a tangle of blood vessels. The liver is the only organ in the body that is able to regenerate and a removed or transplanted portion of a liver can rebuild itself to normal capacity within weeks. I could still give a part of mine. It shouldn’t be removed or given more than twice, but she’s my daughter, and there’s not anything I wouldn’t do to give her life again.

In August, I began researching almost endlessly on EHE. Case reports, abstracts, research articles, definitions. In February, I did it all over again. Someone responded to my blog post to refer me to:

Epithelioid Hemangioendothelioma (EHE) Cancer Support Group, so thankful for the reply to share with me its existence.

I sent a request and Jane accepted me in. I was welcomed with open arms. A most loving community. I began talking with Dawn a few months back. Getting to know one another a little at a time. An amazing lady and a courageous friend. I needed these people to know that I wasn’t there to promo anything, so many people jump into groups to do just that. My hope was to learn and I have. While I do stay in the background more than anything else, I’m truly grateful for each and every one of them.

From what we understand resection isn’t possible for our daughter due the number of lesions, size and location of each. But if it is…

EHE Research – Dr. Brian Rubin
General Fundraising

http://giving.ccf.org/site/TR?px=2538406&fr_id=1360&pg=personal#.VfB_FxFVhBd

Unraveling the Mysteries of Epithelioid Hemangioendothelioma
A Conversation With Brian P. Rubin, MD, PhD
By Jo Cavallo
February 10, 2015, Volume 6, Issue 2

http://www.ascopost.com/issues/february-10,-2015/unraveling-the-mysteries-of-epithelioid-hemangioendothelioma.aspx

Research Gives New Hope To Those With Rare Vascular Cancer August 31, 2011

http://my.clevelandclinic.org/about-cleveland-clinic/newsroom/releases-videos-newsletters/2011-8-31-research-gives-new-hope-to-those-with-rare-vascular-cancer

Patient Crossroads

CRAVAT (Center for Research and Analysis for Vascular Tumors)

https://connect.patientcrossroads.org/?org=cravat

If you are an EHE patient and will be undergoing surgery in the near future, please contact the office of Dr. Brian Rubin, Anatomic Pathology Department of the Cleveland Clinic at 216-445-5551 to see about contributing your tumor specimen to his important research. Thank you.

CRAVAT Foundation
EHE Epithelioid Hemangioendothelioma
Education and Resources for EHE Patients, Their Families, and Doctors

For Newly Diagnosed

http://www.cravatfoundation.org/newly-diagnosed/

More information

Case Report
http://www.amepc.org/tgc/article/view/1119/1455

Radiopaedia
http://radiopaedia.org/articles/hepatic-epithelioid-hemangioendothelioma-1

Overview
http://www.oncologyreviews.org/article/view/259

Wiki
https://en.wikipedia.org/wiki/Epithelioid_hemangioendothelioma

By sharing the resources on this page, you’re gifting new hope back in hopelessness.

Thank you.

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

Posted by twinklev

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

http://youtu.be/625fZH9xn6c?a

She’s the Founder of the United Kentucky Pain Care Action Network (UKPCAN) (Closed Group)
https://www.facebook.com/groups/FFPCANkentucky/

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

https://m.facebook.com/profile.php?id=628656307243460

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”

https://www.facebook.com/Opposition-to-Kentucky-HB-1-Reform-HB-217-aka-Pill-Mill-Bill-595049517218134/timeline/

Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill” (Community)
https://m.facebook.com/profile.php?id=595049517218134

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: sheliakim1251@gmail.com

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