Review: August and September 2016. California Advocacy Day (NPAF | CCCC) Music Moves Awareness (iPain)

Posted by twinklev

On August 1st and 2nd, I was honored to have been invited to attend the California Advocacy Day, debriefing and meetings with Senators and/or their staff at the California State Capital via the National Patient Advocate Foundation (NPAF) and the California Chronic Care Coalition. Attending as the Advocacy Director of the International Pain Foundation and NPAF patient advocate, I had the privilege of meeting many new people including Liz Helm, and be in the presence of others I’ve crossed paths with at the Capital over the years.

For the last 2 years the International Pain Foundation has been working on a multifaceted project. Music Moves Awareness premiered on September 1, 2016 in Los Angeles, California. Releasing their Debut song Hope is True, iPain moved to inspire everyone with an an upbeat, inspirational dance tune that can get patients moving simply by it’s enthusiastic beats.

The 12 Steps to Patient Empowerment was developed with each contributing writer not knowing what they were writing about. The most amazing challenge to create without secondary knowledge and the best outcome that might be hoped for. https://powerofpain.org/ipain-living-magazine/

Copies are available for your business, offices, health establishments. Please contact: media@internationalpain.org or contact me directly at: twinkle@internationalpain.org

Meet the iPain Featurettes https://powerofpain.org/ipain-featurettes/

Nominated and awarded the Melanie McDowell Awareness and Advocacy Award – Hero of hope 2016. Smiles for miles.

https://powerofpain.org/heroes-of-hope/

This year was an accumulation of heartache and hope.

The morning after Music Moves Awareness debut in Los Angeles California. Gayle M. Taylor-Ford, iPain Board of Directors and author of Step 10 – Pain Management, Twinkle VanFleet, Advocacy Director, Melanie McDowell Hero of Hope recipient, iPain, and Barby Ingle, President International Pain Foundation and author of Step 1 – Empower! and co author of Step 3 Discussion – with Sara Hobbs. internationalpain.org

I’m thrilled to be the author of Step 2- Responsibility. 12 Steps to Patient Empowerment and feature- Stronger Than Pain in the current addition of iPain Living Magazine.

Godspeed.

National Pain Strategy PAINS Collaborators Meeting Recap – COMMUNITY PAIN CENTER

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National Pain Strategy PAINS Collaborators Meeting Recap

By Barby Ingle, Power of Pain Foundation President

On June 29 and 30, 2015, the Pain Action Alliance to Implement a National Strategy (PAINS), a group of over 100 pain collaborators and stakeholders, came together in Washington DC to discuss the National Pain Strategy (NPS). The purpose was to provide attendees an opportunity to discuss the NPS and find areas of agreement on next steps, collaborations, priorities, and to hold accountable those responsible for implementation.As the president of the Power of Pain Foundation, I was invited to participate. I went into the meeting with some preconceived notions based on little happening since the Institute of Medicine’s report in 2011 and didn’t expect much to be accomplished. To my great surprise, the meeting exceeded my expectations. I left the meeting feeling that a path toward implementation of stronger access to care issues was clarified as a result of the meeting. I am excited to be one of the attendees present that will be helping move a chronic pain agenda forward, making a difference in the lives of those living with pain.The goals of the meeting were to encourage collaboration among key pain community leaders, to promote the NPS report and build enthusiasm for it, and to facilitate conversations about how to move forward to implementation of the strategy outlined in the report.For me, the meeting clarified the path ahead for the NPS in terms of priorities,implementation, next steps, funding,leadership and accountability. One of the unintended outcomes from the meeting was the consensus to support the messaging of the Chronic Pain Advocacy Task Force (CPATF). The CPATF is a group of 17 consumer advocacy groups convened by the State Pain Policy Action Network (SPPAN), which is a program of the American Academy of Pain Management (AAPM). As a founding member of the CPATF and the representative of one of the 17 groups involved, I was very proud to see that our work was recognized by this larger group of collaborators and stakeholders. As agreed upon, the core messages are: Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.Chronic pain is both an under-recognized and under-resourced public health crisis with devastating personal and economic impact. Effective chronic pain care requires access to a wide range of treatment options, including biomedical, behavioral health and complementary treatment. Denying appropriate care to people with chronic pain is unethical and can lead to unnecessary suffering, depression, disability, and even suicide.

Read the entire article at:

Source: National Pain Strategy PAINS Collaborators Meeting Recap – COMMUNITY PAIN CENTER

First Week of February 2016 – And in Memory of Jim Ingle

Posted by twinklev

My block helped nearly 2 weeks. I had the Lumbar Sympathetic Nerve block on January 28, 2016. I had a reduction from a really hard 8 going in for the procedure to a 4 until a couple of days ago when it started creeping back up. L3 and L4 this time instead of L2 and L4. I was so grateful for this. That’s 40-50 percent of reduced symptoms. When I left to receive that amazing award my medication had been delayed yet again. I was a week without already. My block only covered my right lower extremity so 4 means only that which was blocked. I’m still working on a post to share the Bakken Invitation Award experience. I almost left it all behind and I almost didn’t make it through once there, but I did, and I did. The block eased the flare I left in and came home with, allowed extra midnight snacks for the man, dinners, cleaning, sharing, a little catching up. That really is everything it could have been. I don’t count what I didn’t get from the block, I consider each symptom I get relief from. That allows me an over all number, fairly. I tend to be conservative with the pain scale. The time it lasted wasn’t what my insurance wants to approve it again, but it lasted long enough that I could catch my breath again. Since many don’t want anyone on pain reliever, options are minimal for most of us. Not every option is available in every area and not every option is covered by insurance, therefor, we’re stuck in a trap. I’ve already fallen twice in the last couple of weeks. Staying up on my legs is becoming a another risk. I take so much Ibuprofen for inflammation no wonder my liver is a mess and I need to water my kidney’s in excess to keep them flushed due to diminished function. I didn’t get back on my medication until the 10th day and the night after returning. Had I not been in a flare, or medication delayed, my block may have helped better. The body trying to recover itself from a sudden change and in a sense shock. The inflammation and swelling was horrible. I had my mouth repaired soon after my block. Still a process there. I didn’t have the grafting done even though the bone damage in my face is an issue, too. I fell asleep 4 times today, just worn. I’m charging my SCS right now, so that I can give me a nice goose me up and numb me down.

Movie time.

—

February 4, 2016

I fell asleep before posting last evening and woke to learn of a heartbreaking loss.

Twinkle VanFleet

52 mins ·

It is with great sadness that Mr. Jim Ingle, Barby Ingle ‘s dad passed away this morning. Without Mr. Ingle, the International Pain Foundation (Power of Pain) wouldn’t exist. He lost his battle waiting on a kidney transplant and other life saving procedures. He fought for himself to the last second, reaching his son’s home in his own vehicle, even after crashing it, where he passed away with his son and first responders before ever reaching the hospital. Mr. Ingle didn’t have a phone to call for his own help, the family was trying to have it replaced promptly which also never happened in time.

Photo is Mr. Ingle presenting the Melanie McDowell Award to Dale Lehn 2008 recipient.

The Power of Pain Foundation (International 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. http://powerofpain.org/mcdowell-advocacy-award/

My heart breaks for Barby, and her siblings, who also lost their mom last year. I’m so grateful that I’ve been apart of IPF POP long enough to have been on conference calls with the man himself. Godspeed Sir. Thank you for all you’ve given, all you’ve fought for and for starting this organization in honor of his daughter Barby and memory of Melanie.

Jim Ingle preseting the 1st Melanie McDowell Award to Dale Lehn 2008 2016-02-04

Mr. Jim Ingle presenting the Melanie McDowell Pain Awareness and Advocacy Award to Dale Lehn, 2008 recipient.

I don’t generally solicit donations, but in honor of the man who not only brought “Power of Pain” to my life via his daughter, but ours, he’s worth it.

http://powerofpain.org/donate-ipain/ A gift can be made in his memory and/or honor – Jim Ingle

Thank you!

Live On. Give On | 2015 Bakken Invitation Honoree | Pre-Review

Posted by twinklev

Week of January 11, 2016 (never shared)

As I get ready to fly to Kona, Hawaii for the Medtronic Bakken Awards, I’m trying to help myself overcome challenges related to traveling, weight bearing, pulmonary and sleep disorder issues. My breathing has been unstable this week, my head, neck, arms, and even female troubles have poked me in the side.

I had my appointment with my PMD yesterday to ask for considerations that might help me through as it’s becoming harder and harder to stay up on my own and maintain pain levels. I already put in for ADA assistance during the travel and at the hotel. Yet, I won’t allow myself to be confined to a wheelchair while there, so I’m carefully pacing myself so that my legs carry me. My Medtronic Spinal Cord Stimulator has been my pill for 10 years. I’ll be able to adjust for optimum relief, but to do so also means that I have to either not be on my legs/feet at that time or not raising my settings for added comfort. I learned a long time ago how to get the best out of it for me. I’ve also learned that there are times I have to trade relief for walking and I can’t always have both at the same time. I can set my stim to numb me, but because I am one of the lucky ones whose stimulation does reach the toes, increasing this setting can knock me off my legs. I reserve this for non weight bearing pain relief. This is not an adverse effect, but a plus and benefit that has to be noted and chosen to best fit my time and place.

My Auto Servo Ventilator is too big and quite heavy to carry, so I may have to go without it. Still working on that. Otherwise I’d be traveling with 2 medical devices and have little room for anything else.

At this time next week, we’ll have already landed and be apart of the meet and greet with each honoree, Medtronic and so many others. I’m looking forward to representing Power of Pain Foundation as the new International Pain Foundation, myself as honoree, each honoree for what they have also accomplished and given, advocacy, volunteering, my family, my closest friends, and Dr. Earl Bakken and Medtronic Philanthropy.

There are a few wonderful people and establishments I want to say thank you to for being apart of this with me.

The International Pain Foundation (IPF) #iPain – Previously known as the Power of Pain Foundation. http://powerofpain.org/

Sacramento Pain Clinic – Dr. Michael Levin – Since 2004. Not just a Pain Management Doctor, but a patient advocate going above and beyond his own job for his patients.)

http://www.sacpainclinic.com/sacpain.php

Jacob Chopourian, Therapy Representative, Pain Therapist, Medtronic Inc Neuromodulation, Sacramento, California. www.medtronic.com

(Jacob has been part of my surgical team. He’s also adjusted me as needed. When I had my 9 year battery replaced I donated back to Medtronic my carrying bag, handheld stim (my stim) case, charger, hip straps, antenna, and manuals so that someone who needed these items in whole or in part could have them. Jacob came to my home to pick it up. Amazing man.)

Katie Tamez, Clinical Specialist, Pain Therapy, Medtronic Inc
Neuromodulation. Sacramento, California. www.medtronic.com

(Katie has worked to fine tune me, too.) I’ve no longer needed the 3 programs I started with many years ago, sitting, walking, sleeping. I use a single program with pulse. Wonderful lady.)

Compass Center for Functional Restoration – (Dr. Michael Levin MD) Rick Wurster MSG, MPT, BCIAC http://www.sacpainclinic.com/compass.php

(The center that taught me all there is about pain, physically, emotionally and psychologically. How to live with it using the mind, spirit and body to overcome flareups and maintain a modicum of sanity. Because of them I’ve been able to teach others what they taught me and find some joy and laughter in pain.)

Western Dental – Elk Grove Florin Road, Elk Grove, California

Dr. Tooloei, Staff.

You did great. Thank you for trying before I left for Hawaii. Trying meant enough to me.

Trudy Thomas, Featured BlogTalkRadio Host of the Living with HOPE Radio show on the Body, Mind and Spirit Network.

http://www.blogtalkradio.com/thebodymindandspiritnetwork
So proud of you and all you’ve given, selflessly. Happy that we have each other and our friendship survives the things we can’t do anymore.
Honored to have been both your co-host and guest speaker and warmed that you will always be family. Thank you for being all that I can count on as honorific leader/admin of my group. I love you!

Roy, MD Junction – http://www.MDJunction.com (Honored to have lead your Reflex Sympathetic Dystrophy Support Group for years.

http://www.mdjunction.com/reflex-sympathetic-dystrophy

Glad to have lead the ADHD support group on behalf of the children and parents who needed someone to oversee it. Pleased to still be a Senior Member and
MDJ Advocate. Love you all!)

Barby Ingle, www.BarbyIngle.com
(Together we can! Together we will! And together we are! Through MDJ and Trudy we found each other. I’ll forever remember the ones who cherished me for cherishing them. All 3 of you! Onward I go with #iPain. I love you!)

My Mom and Dad(s) (I know my dad is watching over. Gone since I was 22. My mom and dad was married 25 years when I closed his eyes. My mom and dad have been married 20 years and dated prior to that. So Mr. Don Tresca has been my father just as long as my birth dad was. I pray I’ve honored them all evenly and fairly as their daughter. I love you!)

Erik, Kharisma, Rikki, Kurtis and De’Mantai (my 5 lights). (Awards and recognition is great but not if they are seemingly meaningless to those that it should have mattered most, too.
There’s so much I’ve advocated for on your behalf’s that you’ve never even seen. I know that it all gets stale at some point but if you only knew it was never more for someone else than it was for you. Seek and you shall find. love you! Ohana.)

I’m so glad Daddy saw, felt, and knows now. Sometimes it takes a miracle and that miracle came. It’s all good. Ask him ~winks

Annie-Marie Garcia (30 years! Time in between where we had gaps because life does that with work and loss. We don’t want to add burden to those we love or stomp on someone else’s, okay. That’s what we tell ourselves at least. I’m glad I got you now in the illness you should have never ended up with. I wish I was there when you were first going through it and if only I had known. Lets never let anything separate us again. For you and I, we have something special, we can see each other every day, or have weeks, months or years go by, but we always know that when it comes down to it, we are the ride or die. I love you!)

Maryann Kupidlowski Stafford (My sister since our babies were babies. Young teen daughters. If we weren’t there together we would have never met. Your curiosity, my extended learning, teaching. We both did, and we both gave, mine was just for extending natural order A decade? 12, 13. Time flies. Here we are moving forward in light, love and tomorrow. I love you!)

PK Saint-Amour (Bruja, pain, strength and the sight. Light and the “F’off. I so love you for being courageous in all of it. I’m so glad that you’re my sister in knowledge and fight. I love you!) https://www.facebook.com/groups/InvisibleWarriors/

Eileen McCready (A long time now too, background, foreground, compassion and understanding beyond pain. Sister of mine, always. I love you!)

Saskia Hubelmeijer (My international sister who does all she can in the Netherlands despite pain and hardship, and for America, too. Who’s assisted in leading my group since 2011, as formal admin and informal I love you!)

Billy Rose (Thank you brother for leading light and love above pain and hurt for all people. You demonstrate what the world needs more of and you are providing the change needed to overcome it all again) I love you!

The Council (We are who we are and one day when the earth is over, or death takes us, we’ll still be us, together, teaching, giving, inspiring, awakening those asleep all in their own time) I love you all. http://www.councilofenlightened.org/

The Sacramento News & Review (For featuring my voice and passion over 20 years ago) November 17, 1994, Speaking Out Edition) https://rsdadvisory.com/2015/07/24/sacramento-news-review-november-17-1994-speaking-out/

https://www.newsreview.com/sacramento/home

ECV Chapter 3 (Clampers/widders) E. Clampus Vitus was established in 1849.

http://ecv3.net/ http://www.ecvgazette.com/

(In memory of IRJR http://www.irjr.com/, a great man, friend, Clamper, who many years ago when founded Widders Web honored me with his chat program instead of the one I was using for us, I used his to then honor what he started years previous to that. http://www.irjr.com/widderschat/ While the pages are currently not found and the chat needs updating, I wanted to thank him again. Mr. IRJR is no longer with us.

SPPAN (State Pain Policy Advocacy Network) (I hope we continue on)

RSD(S)-CRPS Advisories

(Founded by me, for you)

—————

Refer to December 27, 2015

https://rsdadvisory.com/2015/12/23/twinkle-vanfleet-2015-honoree/

To be continued!…

The best is yet to come.

Twinkle VanFleet, 2015 Bakken Invitaton Honoree, Sacramento CA, #iPain, with Dr. Earl Bakken Medtronic Co-Founder, Kona Hawaii. Awards reception. January 16, 2016.

http://bakkeninvitation.medtronic.com/honorees-winners/

http://bakkeninvitation.medtronic.com/honorees-winners/2015/twinkle-van-fleet/index.htm

http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=1822170

http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=2122319

http://www.nasdaq.com/press-release/the-medtronic-bakken-invitation-award-honors-12-patients-from-around-the-world-for-giving-back-20151214-00566.

http://www.otcmarkets.com/stock/MDT/news

Creating a Better You | Barby Ingle

Posted by twinklev

Barby Ingle barbyingle.com

I love it when people say, ‘you look so young’ and ‘I thought you were in your late twenties’. If a few people say it, it may just be a compliment, but for me, many say it. I believe age is an option. Yes, we gain a physical number on paper each year but when you look at your age, most think ‘how do I feel’. Age in this instance is a state of mind. I think people see me as younger than I am because I do look young on the outside, but I also have a playful personality. I know what I have lost, they don’t. Most in my life don’t know who I was, what I was capable of, how athletic I was. They know the person they see in front of them. I don’t drink, smoke or do drugs (that are not prescribed to me). So when people say, become a better you, what does that mean for those of us who are already trying to be the best we can be? For me it meant I wish someone would have told me about preparing for things that we may face or someone we love may face (chronic pain, disease, financial burdens, how to navigate the health system and life in general for that matter). I wish that I didn’t take life for granted when I was healthy. I had many experiences, most were great. I took them for granted until developing Reflex Sympathetic Dystrophy which stopped me in my tracks. I met my primary care provider (PCP) in 2005. When we met I was in a wheelchair, bathed about once every 7-10 days, and had dystonia in my right hand, arm and foot. I had cut off most of my hair to make it easier on me. I am sure I looked a mess. He never commented to me on how I looked. He worked to get me feeling better he became the first on my ‘team’. He didn’t know what I used to look like. He was shocked to find out that I was a former model, pageant queen, cheerleader, and athlete. After receiving infusion therapy in 2009, I went to see him. I went from wheelchair to walking with him as my main health provider. I changed my hair, I changed my clothes. Two things I could have done before feeling better, but I didn’t put the effort in on most days. When he saw the new me, he asked my husband how it feels to be with a woman who is getting younger. It’s not that I was getting younger, it is my state of mind improved. Our beliefs and behaviors must shift when we are living with a chronic pain disease, no matter what stage we are in. This shift determines how we feel about our life and health. Often times I would psych myself out. I would say to myself, I can’t do this, I can’t do that. I learned through trial and error what my boundaries are. I kept a journal to learn about myself and I found that my bounds were far past where I thought in my mind. I found that I needed to celebrate each moment, each day. When things got tough and I had to spend days/weeks/months in bed I didn’t need to get down on myself or put stress on myself for what I wasn’t doing. I kept a journal and a made a bucket list during those times. As time has passed, I found ways to accomplish those tasks and come up with new ones. I found that completing tasks is easier, quicker, and more accessible when I live through motivation of starting where I want to end up. Putting it in writing and organizing a plan of action (that is adjustable) is how I began to accomplish my goals. I found personal incentive by manifesting something on the outside first. I changed my hair. It was a simple enough start. It led me to buying a few new outfits. I created a goal of doing more life experiences instead of gathering stuff to sit around me. I started with 4 outfits that are my ‘experience outfits’, and then came up with activities where I could use the outfits. Starting small on the outside helps to manifest how I feel on inside. Keeping track of where I have been and where I want to be showed me that I am of worth. Eventually my mind and insides caught up to my outward feeling. Was I perfect? No. Was I out of chronic pain? No. But, I did learn to count my miracles. An experience can’t be taken away from you unless you let it go. Let go of the negative and focus on the positive; in your mind, heart and outside. Keep working on yourself and start with a few goals. Give yourself ‘what to do’s’ instead of just opposing all of the positive things you could have in life. Even in pain you can find ways to get the end of each goal. To change you, YOU have to practice. Am I saying you can just change your pain away? No way, not at all. I am saying you have the ability in you to change how you face your challenges. Find ways to recognize, understand, and consolidate challenges to see the goals you have set come to be. Don’t worry about timelines. If it takes a healthy person 4 years to graduate college, don’t feel bad if it takes you ten. It is okay. Remember, a win is a win. You don’t lose until you give up. Strive to understand the overall gist of your decisions and don’t let setbacks, others’ negativity, others’ guilt beat out your decision. You have the right to be the best YOU possible; star

Source: Creating a Better You | Barby Ingle

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

World Autoimmune Arthritis Day 2015 | Review

Posted by twinklev

The World Autoimmune Arthritis Day was a 6 day long education and awareness event. Beginning May 15th and ending the 21st of May, 2015. Prior to the event beginning one of our board members lost her son from irreversible injuries and damage from a car accident. Barby’s dad was hospitalized and her mom passed away so when the race started she was still laying her mom to rest. The day before the race ended my mom was rushed to emergency surgery to have a pacemaker implanted. Another Board Member was hospitalized 2 days before the event ended and we’re thankful for all she put in before that. As a team we pulled through. All of us everywhere work through our pain and struggles. I commend you all for leading, teaching, raising awareness and educating. Thank you!

I enjoyed attending The Frustrating World of Autoimmune Arthritis Webinar presentation hosted by the (IFAA) International Foundation for Autoimmune Arthritis co-founders, Tiffany Westrich-Robertson, Tami Caskey Brown, and Kelly Conway, I found it educational regarding access to care, medication management and diagnosis. I took another detour with WE GOT AWARENESS! SELF-ADVOCACY IN THE MODERN DAY presented by WEGO Health who I’ve advocated for as able over the years. WAAD15 was a great distraction for all that we had going on in our lives. Everyone having fun to raise awareness for Autoimmune Arthritis and even learn about other non profits.

Our Cheerleader for life!

World Autoimmune Arthritis Day sources and resources

World Autoimmune Arthritis Day Home http://www.worldautoimmunearthritisday.org/

Autoimmune Arthritis Info http://www.worldautoimmunearthritisday.org/autoimmune-arthritis.html

News and Multimedia http://www.worldautoimmunearthritisday.org/news—multimedia2.html

Meet the Non Profit Race Teams http://www.worldautoimmunearthritisday.org/meet-the-nonprofit-race-teams.html

About WAAD http://www.worldautoimmunearthritisday.org/about.html

Detours http://www.worldautoimmunearthritisday.org/detours.html

There were 5 Detours to attend, a recording is now included.

The Pit Crew http://www.worldautoimmunearthritisday.org/-pit-crew-.html

Where you could submit the names of your favorite community leaders to be included on a global map of resources.

Patient Suggested Practitioners: Rheumatologists, Immunologists, Dentists, Hospitals & More http://www.worldautoimmunearthritisday.org/patient-suggested-practitioners.html

Where you could submit the names of healthcare providers to be included in a global map for patient resources.

Resource Kiosk/Community Supporter’s http://www.worldautoimmunearthritisday.org/page2.html

The Kiosk included-

The American College of Rheumatolgy http://www.rheumatology.org/default.aspx

The European League Against Rheumatism (EULAR) http://www.eular.org/

WEGO Health https://www.wegohealth.com/

National Institute of Arthritis and Musculoskeletal and Skin Diseases http://www.niams.nih.gov

AND THE WINNER IS….

Power of Pain Foundation!

Coming into the home stretch it was clear 3 teams were going to take 1-2-3, but which order? Throughout the race they continued to pass each other, and it came down to who submitted the most selfies and videos, which continued to pour in until the deadline from POPF’s entire staff and Board Members!

The final tallies were as follows:

Your Top 10
1. Power of Pain Foundation 3,903 mileage points
2. National Rheumatoid Arthritis Society 3,768 mileage points
3. Relapsing Polychondritis Awareness and Support Foundation Inc. 3,394 mileage points
4. International Foundation for Autoimmune Arthritis (IFAA) 2,332 mileage points
5. Sjögren’s Syndrome Foundation 1,736 mileage points

6. American Autoimmune Related Diseases Association (AARDA)
7. US Pain Foundation
8. International Still’s Disease Foundation
9. Spondylitis Association of America
10. Lupus UK

Thank you to the remaining Nonprofit Teams as well. Without your resources and participation this event could not have been possible:

National Ankylosing Spondylitis Society
Creaky Joints/Global Healthy Living Foundation
Arthritis National Research Foundation
National Psoriasis Foundation
International Federation of Psoriasis Associations
National Data Bank for Rheumatic Diseases
Arthritis Consumer Experts/Joint Health
Raynaud’s and Scleroderma Association
Canadian Spondylitis Association
Patient Advocate Foundation
Lupus Europe
Arthritis New Zealand
Vasculitis Foundation

We’d also like to thank our Sponsors, Celgene, Pfizer Pharmaceutical, andGenentech. Additionallly the International Foundation for Autoimmune Arthritis and WAAD15 Volunteers who ran and organized the event. And to all of you for attending, thank you!

Via ‪#‎WAAD15‬

World Autoimmune Arthritis Day

https://www.facebook.com/WorldAutoimmuneArthritisDay

You can still follow all the happenings as they occurred.

For your review and education, I’ve compiled each participants website link, so that you can continue to learn and share throughout the year. I hope you find each of the following helpful and useful.

American Autoimmune Related Diseases Association, Inc (AARDA) http://www.aarda.org/

Arthritis National Research Foundation http://www.curearthritis.org/

Arthritis New Zealand http://www.arthritis.org.nz/

Canadian Spondylitis Association http://www.spondylitis.ca/

Creaky Joints https://www.creakyjoints.org/

International Federation of Psoriasis Associations http://www.ifpa-pso.org/

International Foundation for Autoimmune Arthritis (IFAA) http://www.ifautoimmunearthritis.org/

International Still’s Disease Foundation, Inc www.stillsdisease.org

Joint Health http://www.jointhealth.org/home.cfm

Lupus Europe http://www.lupus-europe.org/

Lupus UK http://www.lupusuk.org.uk/

National Ankylosing Spondylitis (NAAS) Society http://nass.co.uk/

National Data Bank for Rheumatic Diseases https://www.arthritis-research.org/

National Psoriasis Foundation www.psoriasis.org

National Rheumatoid Arthritis Society http://www.nras.org.uk/

Patient Advocate Foundation www.patientadvocate.org

Power of Pain Foundation www.powerofpain.org

Raynaud’s and Scleroderma Association http://www.raynauds.org.uk/

Relapsing Polychondritis Awareness and Support Foundation http://www.polychondritis.org/

Sjögren’s Syndrome Foundation(SSF) http://www.sjogrens.org/home/

Spondylitis Association of America http://www.spondylitis.org/

U.S. Pain Foundation www.uspainfoundation.org

Vasculitis Foundation http://www.vasculitisfoundation.org/

And finally, I raised my glass, #RaiseYourGlass with nothing inside it, but spirit and hope.

You can find World Autoimmune Arthritis Day on Twitter- https://twitter.com/WAutoimmuneAD

Looking forward to next year, I hope you are, too.

~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.