#StrongerThanPain

When I wrote Stronger Than Pain the words had already been my mantra a decade plus before. My mind was always consumed with being able to take that one more step. Just one more step. While the song is written in 3rd person and contains specific words that can only apply to me because of the nature of them, the phrase is universal for those who strive to beat pain. It’s for those who have endured despite setbacks, hardships and loss. It’s for those who’ve loved and lost. It’s for all of us. My son Ozra performed my song, my hope, my meaning but with one difference “She” is also each of you ladies whose pain, passion and purpose isn’t just about you, but for everyone. The full version of Stronger Than Pain has not yet been released and there is 2 versions.

 

https://www.facebook.com/KurtisOzra

 

My continuity of care document dated March 22, 2016

Mild recurrent Major Depression

Benign Essential Hypertension

Insomnia

Fatigue

Shortness of breath

Irregular Menstrual Cycle

Menorrhagia

Colon Spasm

Central Sleep Apnea

Memory Deficit

Obstructive Sleep Apnea

Osteoarthritis of Lumbar Spine

Arthritis

Depression

Diverticulosis

Gastritis

Hyperlipidemia

Hypersomnolence

Osteopenia

Prediabetes

Hematochezia

Ovarian Cysts

Reflex Sympathetic Dystrophy

Vitamin D Deficiency

Pain, joint, shoulder

Hepatic Hemangiomas

This is not a complete list, but I wonder if any of it might cause you discomfort, pain, depression or if bleeding from your butt on a regular basis, trying, striving and hurting from each of the others might be pleasant for you. I already know the answer that may be disguised as “suck it up” when if it was you it might be disheartening, depressing and I don’t know, painful? My empathy runs deep for all those who push on to live with any of the above, and those pain related issues I don’t have, yet understand at a level many never will. I haven’t walked every pair of shoes, but I’ve walked enough to know from first hand experiences that my main purpose is to feel you.

I wanted to die, yet I really wanted to live! I wanted the struggle to survive it to be over. As the world turned, I saw the same 2 walls everyday. Not 4, just 2. It was hard to get up and it was hard to leave the house. I gave everything I had and I gave it for nothing expected. I was ridiculed for not supporting other organizations, groups, people when the only thing true in that was that I didn’t have time or ability to give more when I was trying to give a little for everyone. If I gave absolutely everything to others there wouldn’t ever be anything for me. The “me” is the part that was already doing my best, but few saw that or even resonated with the possibility that I wasn’t okay already. People wanted from me, but there wasn’t any mutual giving back, only taking. I wondered why I ever tried in the first place, but I knew the answer to my own question because that’s what I do. It’s what I’ve always done. I had lost all hope. I did my 5 as dirty as those who failed me did. My husband (30 years married in August, 31 years together next month), our 3 of 6 children and our grandson didn’t deserve my actions no more than I deserved being delayed, denied, dismissed and belittled by healthcare providers, groups, and Workers Compensation.

I only saw that their world .. together, would keep turning and that they with each other would make it without me because they would. I can’t handle the 10’s. The real 10’s. Who can?

“When no one else believes in you…

… You better” ~Twinkle V.

I now see groups named Stronger Than Pain, I see so much out there and I’m okay with that. I’ll never tell you how many years back it goes only that the proof is on you before it’s on me because I’m covered. People are always going to take your thing and run with it. All it means is they like it so much they take it or use it. It’s when they take without acknowledgement that it becomes shady.

There’s so much to tell. I’m not ashamed of my actions because that would mean I’m ashamed of those precious suffering souls lost to suicide. I’m not ashamed of them. They are being held in the hands of God. I can promise you that.

If the first or last thing I can leave you with is something to hold onto, believe in, and accomplish..

Be #StrongerThanPain

and “When you think you can’t, maybe you already have”

I pray that I have and that you have also.

I can never go back, but I can go forward understanding why some people are no longer here.

 

~Twinkle V.

 

 

 

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National Pain Strategy PAINS Collaborators Meeting Recap – COMMUNITY PAIN CENTER

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

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

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.

Dr.Bakken and Twinkle VanFleet2

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

 

 

 

Ohana (For Dr. Earl Bakken)

by Twinkle VanFleet

Twinkle VanFleet 2015 Bakken Invitation Award Honoree_1

Front and back

He validated the spirit
And it’s heart
And restored the breath
Of a nearing depart

Acknowledging the path
And it’s hope
Diversity rising
It’s a slippery slope

Catching the reason
Determination and light
In giving to others
The fire and flight

for…

Life, love, and empathy
We have to discuss
Drowning
Counting
On all of us

7, 8, 9
Losing time
Sharing
Your paradigm

Break down,
Nothing on me
Fight and fall,
Nope pain can’t stop she

Crazy, maybe, perception
Not really though
Trinity, affinity
Visions and missions to lead for

She’s rising,
They know she(‘s) flying
As above, so below
The gift of devising

Got you
Got us
Got me
superfluous

Honi; spirit and power
The honoring art
Ha; the breath of life
A spiritual kiss of the hearts

Who could have known
It wasn’t alone
Ohana means family
Family is home.

For Dr. Earl Bakken, Medtronic Philanthropy, #LiveOnGiveOn

With love and admiration on behalf of myself and #iPain  www.powerofpain.org

Mahalo

©2016 Twinkle VanFleet/Golden Rainbow Poetry/All rights reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/  May be shared. Permission required for any other use.

Ohana means family. Family means no one left behind… or forgotten.

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

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

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

Thank you for all you do!

 


 

Faces of Motivation 5 by Power of Pain Foundation –  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

 

POPF September is Pain Awareness Month


 

Nada hay más surreal que la realidad.

Power of Pain Foundation- ADF and Access to Care

 

AZ State Capitol BuildingADF

Power of Pain Foundation recognizes that Abuse Deterrent Formulations are only a step forward
toward drug diversion. We know this isn’t the final answer. It allows an option for patients to
continue to be treated with opioid analgesics and removes many of the barriers involved in non abuse
deterrent medication.

 

POPF Pain Community Needs Assessment Survey

We are not focusing on any one treatment option, we are improving upon the patient/provider
relationship.

The purpose of our survey was to determine who is having trouble getting access to quality care.
who is being dismissed, who is being cared for by a primary physician, who is being sent to pain
management and who is having difficulty receiving ongoing pain care.

We are aware of many individuals who are not receiving proper medication management or treatment
and others who had been receiving care that are now facing obstacles.

Our goal is continued access to care. Our goal is patient empowerment.

Recent Articles

INEFFECTIVE TREATMENT ASSOCIATED WITH THE CHRONIFICATION OF PAIN by Barby Ingle
http://www.lynnwebstermd.com/ineffective-treatment-associated-with-the-chronification-of-pain/

BARBY INGLE ON CHRONIC PAIN AND OPIOIDS by Barby Ingle
http://www.lynnwebstermd.com/guest-post-barby-ingle-on-chronic-pain-and-opioids/

The Unintended Side Effects of Fighting Prescription Drug Abuse by Twinkle VanFleet
http://www.californiaprogressreport.com/site/unintended-side-effects-fighting-prescription-drug-abuseTwinkleV_SB1258

 

 

 

 

 

 

Barby Ingle: Tamper-proof pain drugs deserve support

http://www.desertsun.com/story/opinion/contributors/2015/02/28/ingle-pain-medication-%20tech/24144627/
With the Power of Pain Foundation as a sponsor of the new bill AB 623 on Abuse Deterrent
Formulations, the above article  Op-Ed by our President has special significance being published 2/28/2015.
#RareDiseaseDay http://www.rarediseaseday.org/

Our President also wrote articles for for WA, NV, AZ, and CA.
She wrote letters to legislators in MD, MO, UT, CO, AZ.
BarbyIngle-FillYourPrescriptionOfHope
We are committed to you!

 

Power of Pain Foundation Advocacy Committee
Twinkle VanFleet, Board Member, Advocacy Chariwoman

Power of Pain Foundation 2014 Top-Rated Great Nonprofit

POPF2014TopRatedGreatNonProfits

Great Nonprofits is a place to find trustworthy nonprofits. Their mission is to inspire and inform donors and volunteers, enable nonprofits to show their impact, and promote greater feedback and transparency.

They have chosen the @powerofpain foundation #POPF as a 2014 Top Rated Nonprofit again for the 5th year in a row!

 

Congratulations to POPF on another great accomplishment!

Power of Pain Foundation on GreatNONPROFITS

~Twinkle V.