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

Chronic pain, opioids, addiction and controversy

Posted by twinklev

Whale Watching Cruise - Beautiful

I’m not sure how I should present this. Do you want it kind, sincere, and respectful, or do you need it blunt, open and firm? Do you want it me for you, or you against me, us? Do you want it white or black? Love, care and light or a little profanity to remind you that the world isn’t one way or the other?

You can judge me, you already have. Maybe you need something to judge me for. I refuse to allow you to add me to any negative category. I’m not a little kid anymore and I won’t be silenced because you think your ideals are above someone else’s. I’m heading on 50.

I’ve been on and off opioids since I was 22. Just because my life sucks and I’ve dealt with surgery after surgery, procedure after procedure, diagnosis after diagnosis, and I’ve been intractable for 15 years doesn’t mean I chase the pain to get the medication. I haven’t. There has not been a single time that I went seeking medication I shouldn’t have. My random pee tests are clean and prior to ever being injured my work took my hair, follicles that went back a year for drug testing. And while it’s none of your business in situations like this, where the anti opioid groups are stead fast against that kind of pain relief, I’m compelled to tell my business to justify my reason for taking it and the reason the physician prescribed it.

My pill is my SCS Spinal Cord Stimulator. It has been since 2006. I use a single low dose partial agonist and partial antagonist pain medication. There is no high. I take nothing for break through. I take Zonegran 100, 2x and Cymbalta 30, 1x. Nuvigil (Sleep disorders- Central Sleep Apnea with Cheyne Stokes, + Obstructive. Mixed/Complex/Auto Servo Ventilator (ASV) and maintenance for high blood pressure, Lisinopril, Hydralazine and Lipitor. There you go, now you know it!

If you’re a physician you have to know that blood pressure can be compromised by pain levels. Well.. at least that is what I am always told by physicians unrelated to one another, my blood pressure is too high because of physical pain.

Interesting right? Maybe not.

Dr. Andrew Kolodny replied to my post on Twitter, stating, paraphrasing, not a direct quote, education and personal responsibility doesn’t make opioids more effective or deter abuse.

Really? Then why is there a CDC work group to attempt just that? I’m not going to go into specifics because you can all find it for yourself, and I’m not going to give the run down of the call because it’s public record. I was on that call. See the Federal Register.

One physician shared that she prescribed not knowing? For real? You didn’t know with your education and training that prescribing opioids were… .um opioids? (Where was your education and common sense on that one and if you weren’t educated as you claimed, why didn’t you seek it for the benefit and well being of YOU and YOUR patients) Okay, so… that was your attempt to show the call how horrible the opioid is and minimize PERSONAL RESPONSIBILITY. Backfire!

Education is crucial. Point made.

Hate me yet?

Dr. Kolodny states that personal responsibility doesn’t matter. Really Doctor? That’s a lie! Because when someone falters you, yours or someone you’re advocating for it absolutely matters.

My nature is to say I’m sorry, I’m sorry for all of you who’ve lost. Lost to addiction, and death. But I cannot be sorry that I’m fair, even, and compassionate for the suffering AND regardless of what they are suffering with or for. hm, well I don’t want to call persons weak, just unable to hold back heading for another, whether it be a chemical hook or simply choice.

Is it bad word time? For fuck sake be responsible for you and yours! If your child was a minor at the time of receiving medications that turned out to be harmful, you were responsible. You, the parent, or guardian! If the child was an adult of legal age in their jurisdiction, they are then responsible. And.. parents know better than anyone, more than a physician, more than a pharmacist, that something is up or wrong with their offspring. Minor or adult, we know, and if we claim we never did we’re not only lying to others but we’re deceiving ourselves. If you never saw the signs? Ouch, you just didn’t care to look for it. And if you couldn’t see it? Have a little compassion, how could you ever expect the doctor to see it? Because he is a doctor? Not true, we’re parents. 15-30 minutes a doctor visit at best compared to our lifetime with our kids. Minutes upon minutes, hours, days, weeks, months, years.

Hate me yet?

If my child went to the doctor, claimed pain, and I don’t even care at this point in writing this if the kid was in pain or wasn’t, but took the Rx, filled it, took the medication as prescribed, misused it,…and then decided to throw back (you know, toss some alcohol)

My child is to blame. Not the physician! We seek care from doctors, they do not seek us out. We tell them what we tell them and they base the prescription of the truth or shit we give them. We do not have to take that Rx to the pharmacy, we do not have to fill it and we certainly don’t have to put it in our body. It’s not fair to call them pushers. How can they push, when a person went to them? A pusher is someone who seeks another out to push a drug on them.

Does it even matter after all this if the medication was taken as prescribed? Nope! Because the only way to overdose is to misuse. If the doctor prescribed a medication adverse to another medication the patient is already taking I would be advocating for you and the error. Dang, I feel bad for back hands I’m going to get for this, but doesn’t anyone get it?

Maybe no mix, maybe no alcohol, great! Good job! Still the only way to overdose is to misuse unless another adverse complication was present.

I’m disgusted by a world that rather blame someone else than accept the consequences of their own actions. Oh and yes I’ve been hurt. Damaged in fact from other’s irresponsibility and I do advocate for that change but I don’t harm others on behalf of myself.

According to Dr. Kolodny, personal responsibility doesn’t matter. Does this apply then to vehicles, officers, surgeons, pilots? I think I know his answer, of course, but he’s already let them off the hook. And hey that’s okay! After all, why should anyone be responsible for anything they do. Blame it on the traffic, the felon, the patient, or the passengers.

Contrary to what it may seem, I do respect the Doctor. I’m not inclined to agree with his adamant perception of placing all people who use opioid relief as addicts, or heading for addiction. Sorry, don’t care what a few images of the brain or a poll might indicate. There’s billions of people in the world, millions on medications, and a fraction to insinuate possibility or potential from dependency to addiction.

Pain in general causes advocacy. Loss instigates the passion to make a wrong right. So while chronic pain patients are being punished, ridiculed, humiliated, stigmatized, belittled, what about your pain? Your mental pain urged the controversy against opioid managed pain care versus loss of livelihood.. Ours is physical, yours is mental and emotional.

I have a hard time understanding why any of you care what we take when you won’t be there if we overdose or commit suicide. You’re not there to tell someone striving to make it, good job, proud of you. I have a hard time being used to make your point and profits.

I have a hard time with you looking down at us, when you don’t even know us. You don’t even want to walk in our shoes to feel us. But you want us to walk in yours and feel you.

Maybe, instead of saying “people” which implies all (It is the plural form) how about some, many or most (in your opinion) otherwise you are separating us from you. You make it as if everyone is horrible, addicted, heading for addiction, stronger meds, etc. Everyone but you and yours (your groups).

Then we speak out and you become holier than thou against us whiny, complaining, lazy, drug seeking, pain complaining “people”.

Guilt is the hardest human emotion to overcome.

All we had to do was work together, all we had to do was listen to one another. We could have cared for each other. And in the long run, the children might have truly been educated to know better.

When we get a physician as Dr. Kolodny implied stating education is meaningless? I have to disagree. Education educates, I’m trying not to roll my eyes because he kinda dummied himself down on that. No disrespect intended.

You may dislike me, think I’m a b*tch, judgmental, or talking too much (not true, you’ve already judged me/us… and quite vocally I might add, news, columns, etc ) and I’ve only just begun, but…

I still love all of you and would fight for YOU if no one else did.

That’s the difference between you and I.

I wish you all well,

And enough.

~Twinkle V.

Thar Pharmaceuticals drug to undergo phase 3 trial | Pittsburgh Post-Gazette – #CRPS

Posted by twinklev

January 21, 2016

By Kris B. Mamula / Pittsburgh Post-Gazette

Thar Pharmaceuticals Inc. has received Food and Drug Administration approval for phase 3 clinical trials of its core product, dubbed T-121. Marketing of the oral drug, which will be used to treat severe, persistent pain, is expected by 2019, according to President and CEO Raymond Houck.“Getting to phase 3 is a big deal,” said Mr. Houck, 58.Phase 3 trials last up to four years. The test is intended to gauge a drug compound’s effectiveness, according to the FDA. Only 25 percent to 30 percent of drugs reach phase 3.Thar, which was founded in 2008 and employs seven people, is targeting complex regional pain syndrome, a condition that usually follows a bone fracture, serious burn or other trauma. About 70,000 people nationwide experience such pain, which can abate over time or become a disabling condition.There are no Food and Drug Administration-approved treatments for the pain. Thar developed the drug through the FDA’s orphan disease program, which allows for expedited review, tax credits and other competitive advantages for medications that help fewer than 200,000 people. Historically, big drug companies have shunned diseases that affect few people, focusing instead on making the next blockbuster statin, a medication taken by millions of people for high cholesterol.But Big Pharma has been increasingly paying attention to orphan disease treatments because of the potentially big paybacks for new prescription medications. Thar is not yet profitable and funding for operations has come from private investors.Thar’s focus is converting intravenously administered medications into ones that can be taken orally, preferred by health insurers because oral drugs are less costly to administer. Patients also tend to prefer oral drugs because administration is noninvasive.Thar’s T-121 is an oral version of Novartis’ intravenous-only zoledronic acid, which is sold under the Zometra brand name and prescribed to prevent or treat weakened bones and other conditions. Zometra’s safety record is expected to further speed FDA review of Thar’s oral version, Mr. Houck said.

Read the full article for more information:

Source: Thar Pharmaceuticals drug to undergo phase 3 trial | Pittsburgh Post-Gazette

Ohana (For Dr. Earl Bakken)

Posted by twinklev

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.

Twinkle Vanfleet | 2015 honoree

Posted by twinklev

Twinkle was diagnosed in 2003 with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Syndrome (CRPS/RSD), a painful, debilitating and often progressive central nervous system disorder. A spinal cord stimulator has helped manage her pain, and she has expanded her advocacy efforts on behalf of those with neuropathic pain disorders from online to in-person events. As advocacy director and executive board member for the Power of Pain Foundation, Twinkle works on policy efforts, patient awareness and many other aspects of chronic pain.

Bhim Mahat

Kathmandu, Nepal
Cardiovascular disease

David Simmonds

Prince Edward (Wellington), Canada
Parkinson’s disease

Juan Carlos Hernández Corredera

Salamanca, Spain
Barrett’s esophagus

Kerry Kalweit

Pretoria, South Africa
Type 1 Diabetes

Lisa Visser

Orono, Minnesota, United States
Sudden Cardiac Arrest due to a heart defect

Qi Zhang

Beijing, China
Type 1 Diabetes

Sheila Vasconcellos

Rio de Janeiro, Brazil
Type 1 Diabetes

Dr. Thomas Okello

Kamapala, Uganda
Damaged heart valves due to Rheumatic Heart Disease

Twinkle VanFleet

Sacramento, California, United States
Complex Regional Pain Syndrome, Type 2

Vincent Browne

Galway, Ireland
Cardiovascular Disease

Tanya Hall

Melbourne, Australia
Cardiac Arrhythmias, including atrial fibrillation

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

—

Only 2 of the 12 Honorees are from the United States. I’m one of those 2. Each honoree has an amazing story to share and is living with a form of medical technology. I advocate for these options as well. Without force or mislead intentions, options are what allow us hope and survival. It isn’t about Pharmaceuticals, invasive treatments, or the non-invasive it’s about what relieves each individual. What might work for me, may not assist another and what may not assist me, may respond to someone else.

I could have removed the body piercings from my life. I could have. They didn’t evolve from nothing other than pain in the first place. Each piercing multiplied as a diversion to pain during the time when I was left in medical limbo. They were my self-medication. No! Not everyone becomes an addict. Not everyone in unrelenting pain seeks more and not everyone turns to heroin. I’ve taken enough in my lifetime and I’m not nor have I ever been in the classification of this epidemic. I leave the piercings so that you will judge me. Falsely judge me. It’s your mistake, not mine. It’s your perception, what you create and believe in your mind. I chose to fight pain, and learn from it. I chose to use the tools provided to me in the multidisciplinary approach and in the Medtronic Spinal Cord Stimulation and I choose to maintain the lowest dose of a single type of pain medication in order to allow me to function enough to get out of the home a few times a year, weight bare enough to feed my dogs, not be confined to a wheelchair, advocate with the Power of Pain Foundation, watch my grandson grow, be a part of my children’s lives and care give to my husband of nearly 30 years.

I’m not able to drive; I have to rely on someone else. I have to work around their time, schedules and life in order have that ride.

Sometimes it’s enough to want to give up, but I haven’t. The Power of Pain Foundation has honored me in my decline and ability as much as I have honored them in all that they do. It’s for this reason that they are the grant recipient for my award.

Only once in a lifetime are you recognized for something so humbling and it was for nothing more than using my new life to live on and give on because that is what I’ve done.

It’s truly an honor! Thank you Dr. Bakken!

To be continued

Mirage

Posted by twinklev

It’s unfortunate that as pain patients we have to play the game you want us to in order to be accepted into society. In the midst of the CDC’s Opioid Prescribing Guidelines that are being implemented and much of the commentary by various members of the medical community, PROP or anti opioid groups I’m left with a single phrase of truth. “I’m damned if I do and I’m damned if I don’t.” And so are you!

Pain patients should just push through it right? Okay! We should stop whining, quit complaining, cease everything you consider negative and survive it, right? Damned straight I’m right! But check it out! As soon as we do, to appease you, we’re well enough, we fabricated it, malingerers, and we’re a yxz with predominate pain as described in the ICD 10. We’re fine if we do and we’re lazy cry babies if we don’t. Oh and that pain we have? We’re just obsessed. Are you sure about that?

Comments are finally open-

Your voice is important

Federal Register Notice: Proposed 2016 Guideline for Prescribing Opioids for Chronic Pain

You finally have the opportunity to read what is included.

CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016

I’ll be sure to have my death certificate fought in any instance, including suicide.

Enough really is enough already!

Mirage

December212012byKharismaVanFleet

By Twinkle VanFleet

Montage,
Entourage

Applause,
Just a Mirage

Envision,
Collision, precision.

Missions

Decision, revision
Division, supervision

Manifested, suggested

Visions,
Acquisition, recondition

Provisions

Volition, superstition,
Intuition

Illusion
Delusion,
Fruition,

Why?
Solutions

It’s all a ..
Mirage
A smudge on the collage.

Twinkle V December 12, & 15 2015 #CRPS #StrongerThanPain

December 12 and December 15th. Still haven’t combed out them braids.

The funny thing is that some of us fake it to make it, but really…

It’s just a mirage.

Power of Pain Foundation: Seeking Content Contributors

Posted by twinklev

The Power of Pain Foundation is seeking writers to produce original content for an original project. Both healthcare professionals and non-healthcare contributors are encouraged to apply. Space is limited.

If you write for this project, the article will be accredited to you, as the author. You would be giving Power of Pain Foundation permission to publish it in our upcoming magazine and use it in POP circulation materials. Our content contributor articles are being reviewed by multiple medical professionals for accuracy and fairness prior to publication. These reviews may include edits. You still retain author rights other than the permissions granted to publish and distribute without compensation from the Power of Pain Foundation in conjunction with this project.

You will need to review, sign and return a non-disclosure agreement prior to receiving your assignment.

If you’re a writer, blogger, or contributor with another organization or facility there is no conflict unless you create one by disclosing information and confidentiality protected by the agreement.

To be more precise, you may not use, discuss or write about your assignment during the project’s development. You need to be able to produce original work and be able to submit on a deadline.

If you’re interested, we would love to hear from you.

Thank you!

Please email: twinkle@powerofpain.org

Magazine in the subject line.

Deadline to apply December 16, 2015 unless otherwise updated.

Overcoming Challenging Obstacles

Posted by twinklev

Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet below.

The past few years have been a test of strength, endurance, and possibilities amidst constant setbacks to overcome. 5 years after the injury that led to my CRPS, I did go back to school for a degree in Corporate Publishing. At the end of 2006 I took leave to have my permanent Spinal Cord Stimulator implanted and I returned approximately 10 weeks later. Due to not being able to drive any longer, my husband took me and picked me up in between his own full-time work schedule. By 2007, I wasn’t able to keep up any longer. My grandson was born in 2006, too. My husbands first heart attack when he was 37, 2 stent placements, his Diabetes diagnosis, he only used accumulated vacation time for it and returned to work in a weeks time. In 2007, we bought or first home, but he also lost his 13 year career and stability when his company C.S.A.A. (AAA) relocated out of California. I continued to raise awareness for chronic pain, met Trudy Thomas, became a leader at MD Junction’s RSD Support and remained for 3 years. My own support group which I began on My Space in 2003 was moved to Facebook, yet I didn’t move the members with it. I like for people to find us rather than to send out invites or notify. I met Barby through Trudy. My son had a traumatic brain injury in August of 2011 and my husband had a second heart attack within a year. I stayed in the PICU with Ozra for 10 days. In December of 2012 I stayed at the hospital with my husband for the entire 9 days during his quadruple bypass surgery, the first few days I slept in the van. In 2012, I had Gall bladder surgery and in 2013 I had another Gall bladder surgery which included the removal of part of my liver and multiple hemangioma’s. https://rsdadvisory.com/2013/07/17/gall-bladder-fiasco-continued-and-hopefully-the-final-chapter/

2014 my daughters liver disease, our sons birth defect diagnosis from Shriners Children’s Hospital unrelated to his TBI and my surgery to have my SCS battery replaced. Piece of cake, mostly. 2015 started with a bang and 3 weeks of hard Cymbalta, Zonegran, and Clonazapam withdrawal due to WC delaying Rx refills. The other 2 weren’t filled either, but really no effects from them as much as the other 3. I no longer take Clonazapam or get the Lidoderm. It hasn’t been easy, especially when Clonazapam did help and pain management medication was and is already at the lowest minimum. I already do all that I can to minimize my own agony and I practice these coping strategies each and every day. My husband just had surgery to repair a torn shoulder a few months ago and we just learned by MRI he has another tear in his knee. We’re still learning all we can at Stanford for our daughter. Rikki is managing well. My purpose is in helping others, it’s all I’ve ever done one way or another, but it isn’t my passion. I’ve come to realize it can’t be. It’s not the fire flickering about the dancing flames that motivates my spirit to fly. My bucket-list goal survives all this. It’s not writing, I have that. It’s not policy, POP gave me that opportunity again. It’s much deeper than that, at least for me. Our son and oldest daughter are moving in together on the 1st. My man and I will have our home to ourselves. January 26th begins my 16th year. I’m not sure where 2016 will take us, I just know I take a lickin’ and keep on tickin’ … for mine.

Overcoming Challenging Obstacles

“Pain isn’t in our head, but it is in our brain, and our minds. Pain is sent from the spinal cord, sending messages to our brain, back to our spinal cord and up and down those nerve pathways. Pain signals reach our endorphins, limbic system, https://www.dartmouth.edu/~rswenson/NeuroSci/chapter_9.html hypothalamus, where they then affect our emotions and other bodily functions. http://www.medicinenet.com/script/main/art.asp?articlekey=10812

Functional restoration afforded me lessons and insight to be able to push on. Sometimes we already realize these lessons for someone else, but when it’s us, we don’t recognize it the same, we change, unless we change us back.

It’s a daily process to overcome additional challenges brought on by chronic or intractable pain. It’s moment by moment at times. Having to stop something suddenly to practice breathing exercises to decrease a stress situation brought on by either emotion or a spike in pain, bring a rise in blood pressure down, use focal points, imagery or going to my “happy place” in my mind to ease myself.

“I will walk, when I cannot walk I will carry myself, when I cannot carry myself, I will fly” ©2009-2015 Twinkle VanFleet/@rsdcrpsfire Written while attending Compass Center for Functional Restoration

John C. Thomas, PhD, Rick Wurster MSG, MPT, ABP, BCIAC, Leticia Camarena M. A., Tatyana Yatsenko, Larry Lane, Patient, Patient, Twinkle VanFleet, Patient. Compass Center for Functional Restoration Graduation July 17, 2009

I began recording both my P & E. I tracked my “pain” level and my “emotional” level using the same Numeric Rating Scale. The 11 point 0 – 10 scale where 0 represents “no pain” and 10 represents “worse pain imaginable”, “as bad as I can imagine” or unimaginable. I don’t do this anymore because I’ve learned to have the awareness without tracking, but for example at the moment I logged, my E/emotions/stress was an 8 and my P/pain/physical was a 5, I would eventually learn that my pain level would most likely rise anytime. I had to use my cognitive tools right away to reduce my stressors in order to manage the physical pain. I discussed this concept at MDJunction.com when I was a group leader in the RSD Support Forum in 2009.

Life itself can be hard, add pain to it, and it’s even harder. It can be managed with the right tools. It’s never going to be perfect, but we can make it as comfortable or as tolerable as possible for ourselves. Removing or decreasing triggers that instigate pain have eased me. I can’t watch the internet all day. It’s not because I don’t love or care for everyone. It’s because there are pain triggers everywhere. When we see images, graphics, memes of illness or disease scrolling by, especially our own, a trigger can occur. I’ve learned over the years to recognize this. I have the awareness to understand that I can be a contributing factor in my own discomfort.

I never went to preschool and Kindergarten was only for a week or two. I started school in the first grade. I was taught at home and I was reading at advanced levels by the age of 5. My comprehension and spelling ability was always above average. While I either suppressed it or just didn’t care to acknowledge it, I did go to special classes in the first and second grade because I couldn’t pronounce the letter’s S and T in words and sentences properly. I was a critical thinker immediately in life. http://www.criticalthinking.org/pages/defining-critical-thinking/766

By the time I got to my 4^th elementary school in the middle of the school year in the second grade, I didn’t have to tell anyone I went to the classes with the special ones. Those new kids and that neighborhood became the ones I grew up with until I left Sacramento in October of the 9^th grade to move to L.A. County for my dad’s job. The rest of that year carried with it a bit of insecurity. I started Drama at my new high school and as a Junior I was in second year advanced drama, speech, debate and thespian clubs, involved in school plays, in chamber singers for a while, I swirled the baton too, but chose my priorities and kept to the one’s I still use today. By the middle of the 11^th grade I was off to the high desert where my parents bought a home. I’ve been in 4 high schools, 2 Junior high’s due to the district split and several elementary. I learned to adapt young. I may not like it, but I do it fairly well. I’m a survivor of repeated childhood molestation and indirect physical and emotional abuse.

I’ve been an Empath http://themindunleashed.org/2013/10/30-traits-of-empath.html for as long as I can remember. I can vividly still remember leaving my teething ring on the back metal bumper edge of my dad’s best friend’s pickup truck and them driving away with it. I’m hypersensitive to people, places and things sometimes to my own detriment, yet I’m also a no-nonsense girl. I’m inclined to the natural order of things, including man and woman, but I’m not a doormat. I love my crazy and he does, too! Why? Because it’s really not all that crazy, I just like to have it appear so in the midst all the uncertainty in life. Laughing is the best medicine of all. If I can make you laugh, give you something to laugh at even if it’s at my own expense, I’m thrilled to have been of service.”

Empathy Vs Sympathy

http://www.diffen.com/difference/Empathy_vs_Sympathy

Sure there are times I think “Dang, no one gets it!” I don’t mean in everyday situations, I mean in my critical thinking. Those who are on the same page fear agreeing openly until my thought, reasoning, even an educated statement that I make is validated by someone with high education, authority or status. By that time I really don’t need the care, concern or acknowledgment. I might have needed it when I was no one to be acknowledged for. No one will ever know in these situations because I’ll not ever treat them any different and there isn’t any animosity, but there is recall. Why? Because everything we do or don’t do to another person makes an impact on them. Those impacts influence the rest of their lives by accumulation in decisions and choices. This includes my interaction with other people.

By the time I was in the 4^th grade I was in the MGM program. At that time called Mentally Gifted Minds. My 9-year-old grandson is currently in the Gifted and Talented Education Program (G.A.T.E.).

During the 4^th to 6^th grade 2 of my class periods were reserved for tutoring the NES (Non English Speaking) students who just joined our Country from Vietnam, and other Southeast Asian communities. I was 8 years old when I began the 4^th grade. These years were 1975-1977/78. Due to being bright enough to be a student teacher at such a young age, I missed normal class subject time; I began to fall behind in math studies. My mathematical education is only that of general knowledge. I held enough that I was promoted to General Manager for a Restaurant by the time I was 24.

I started college when I was 15 in the high desert of California. Law and Acting. I studied both Fundamentals of Crime and Delinquency and Theory and Practice of Acting. I loved being a minor, non-adult, in an adult law class. I loved that my mind was evolving, but it was at a pace others couldn’t keep up with. I loved learning by law enforcement mentors and the few things I participated in to grow and develop lifetime strategies for. I’ve been fond of the Law, Sociology, Philosophy, Theology, Theosophy, The Human Mind, Psychology, Enlightenment, Consciousness. Alternative Lifestyles, Natural Order and the last decade or so Pain Psychology. I like various other topics relating to each of these, too. When I indulge in a book these are the things I enlighten myself in.” Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet (Currently unpublished in its entirety) ©2015 Twinkle VanFleet, Overcoming Challenging Obstacles. All rights reserved.

(Several paragraphs have been removed from the original for this share)

It really is a multi-disciplinary approach to pain care and taking an active role in our own overall well-being that makes the difference between making it or breaking it. Even if we have to fake it to make it to get there.

~Twinkle

Review – West Coast Pain Summit: Advocacy, Access to Care and Neuromodulation

Posted by twinklev

November 18, 2015

The West Coast Pain Summit was held on November 14, 2015 at the Elk Grove Public Library Conference Room. In attendance was Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com), MarLeice Hyde – Erasing Pain (erasingpain.com) and Michael Connors, LVN. Harmony Home Care (harmonycareathome.com). We had local and out-of-town attendee’s join us. Our Power of Pain Foundation Delegates Erik and Kharisma VanFleet assisted as needed and 9-year-old ‘Tai Howard offered a friendly smile and a well-behaved demeanor.

Lynn Green, Twinkle VanFleet, Jacie Touart #popwcps #NERVEmber November 14, 2015 POPF 1

Mr. Clete Dodson won our Power of Pain Long Sleeve Shirt chosen from the in person drawing. Monique Maxwell was chosen for our #NERVEmber silent drawing.

My presentation included, but was not limited to:

<Begin>

Welcome to the First Annual West Coast Pain Forum hosted by the Power of Pain Foundation.

This year hosted and sponsored by both the Power of Pain Foundation and Medtronic Neuromodulation.

Our topics today include Access to Care, Advocacy and Neuromodulation with Medtronic Pain Therapies from Medtronic.com and TameThePain.com

Access to Care

Patient Rights

There are 8 key areas to the Patients’ Bill of Rights

You have the right to accurate and easily understood information about your health plan, healthcare professionals, and health care facilities.
You have the right to your choice of providers and plans.

You have the right to emergency services. (Emergency department, urgent care)

You have the right to take part in treatment decisions.

You have the right to respect and non-discrimination

You have the right to confidentiality. (Privacy of healthcare information)

You have the right to file complaints and appeals.

You have the right to your consumer responsibilities. (Take an active role in your own health and well-being. Doctors are only a tool, too. )

Patient Communication

Understand your symptoms

Communicate with caregivers and healthcare professionals

Communication is essential.

Become an expert in your pain

Be prepared when attending your doctor’s visit.

Keep a pain journal.

Write down your questions.

Do you have concerns about your medication, or treatments?

Take notes.

Have a shared understanding of your pain and symptoms.

Get emotions under control.

Be assertive, but listen to others.

Describe your pain. (Don’t just say its pain. Does it burn, stab, pinch, tingle. Does it feel like cutting, aches, or throbbing? Is it localized or all over? Is it instigated by stress, depression, emotions?) Your doctor can’t help you if you’re not able to communicate.

Take someone with you to your appointments.

Take responsibility in reaching goals.

Caregivers: Be mindful and assertive in caregiving. According to the Department of Pain Medicine and Palliative Care at Beth Israel Hospital in New York, a family caregiver is “anyone who provides any type of physical and or emotional care for an ill or disabled loved one at home”. For this definition, “family” refers to a nonprofessional who is called “family” by the person who is sick. Sometimes, family is whoever shows up to help. (IN the FACE of PAIN, 5th edition, page 40)

Patients

Be easy on your caregiver without them you might not have any one to care for you. If you’re both a patient and a caregiver, be easy on each other. No one knows better than both of you.

Reducing Conflicts

Keep one network of physicians. One primary care provider, let referrals be given by only him or her.

Use only one pharmacy. Have medications sent to the same location. Pick them up from that location.

Don’t allow more than one physician to prescribe you an opioid pain medication.

The PDMP/ Prescription Drug Monitoring Program contains records of your prescribing history and is maintained and reviewed for changes in your habits.

When visiting ED’s describe your pain on the 0 – 10 NRS or Numeric Rating Scale which is most commonly recognized in emergency care. The NRS Scale for pain measures the intensity of your pain. It’s the 11 point numeric scale with 0 representing “no pain” and 10 representing “the worse pain imaginable”, “as bad as you can imagine” or unimaginable and unspeakable pain”.

Don’t tell the doctor your pain is an 11 or 20. You may be found unbelievable and your access to timely and proper care may be delayed, or in some instances even denied. You want them ready and willing to assist and care for you without second guessing.

*Adherence

Medications don’t work if we don’t take them. They’re prescribed to be taken as directed. Not doing so can lead to flare ups, increased pain, adverse reactions, withdrawal and misuse.

Examples of non-adherence

Not filling prescriptions

Not picking up filled prescriptions from the pharmacy

Skipping doses

Stopping medication before instructions say you should

Taking more than instructed or at the wrong time of day

*(IN the FACE of PAIN, 5th edition, page 16)

Potential setbacks

Many patients, including myself, have a severe Vitamin D deficiency in addition to the dystrophy caused by their diseases, or syndromes. Dystrophy is defined as – a disorder in which an organ or tissue of the body wastes away. This includes the bone and tissue in the mouth, jaw, teeth, and gums. Access to care can be a setback when our teeth decay, break away, or we’ve lost them as a result. Lacking dental insurance is an issue of its own. Judgement regarding addiction, misuse and drug seeking can hinder care until each time we prove otherwise. Additionally, BiPAP and CPAP use can contribute to dry mouth and decay. Moisture removed from the mouth is another price we pay just to breathe.

AB 374

The California Legislature approved a bill (Assembly Bill 374) the second week of September. Step Therapy required that a patient try and fail (fail first) a medication before being allowed to take the one their physician would have otherwise prescribed for them. AB 374 now allows providers in California to fill out a form to bypass step therapy requirements.

The PA Shuffle: Prior Authorization; information on our efforts can be found at our table, next to our ADF Policy efforts.

An energy assistance program is available through SMUD for qualifying patients who use specific medical devices. You can request the Medical Assistance Program Application by calling the Residential Inquiries number located on your bill.

Each of the above can assist in access and care. ( 7 min ) ^

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Introduce

Pain Clinic (15 mins)

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Break, meet and greet, #painPOP info

We’d love to have you take part in our #painPOP in the parking lot after the conference for photos and a bit of fun in raising awareness for National Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome Month. Our #painPOP campaign is participate or donate. Accept a challenge or donate to our cause.. I challenge all of you to raise awareness for the painful, debilitating and often progressive Neuro autoimmune illness that desperately needs a cure, an understanding for better quality of care, early diagnosis for stabilization or remission, and continued education and support materials, programs, free public educational events and conferences that we provide free to patients, caregivers, the healthcare community and the general public. We can’t do it without the help of awareness and funding. If you didn’t receive your raffle ticket joining us today, ask for one. Check NERVEmber.org tomorrow to see if you’ve got the winning numbers. You’ll be contacted to be sent your prize. Medtronic is up next with a demo, overview and a Q & A session. Enjoy each other!

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Introduce

Medtronic

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Advocacy

The Power of Pain Foundation Co-Sponsored SB 623 ( Abuse-deterrent Opioid Analgesics ) with Assemblyman Jim Wood and attended the live press conference held at the California State Capital on March 24, 2015. We will continue to support this bill in 2016. The bill will provide a safer alternative option to opioid medications by deterring several non-swallowing ways opioids can be abused.

Getting involved

You can join our international Delegates team by visiting: powerofpain.org/delegates-of-popf

We’re always looking for committed local volunteer advocates to support our legislative and policy efforts. The Power of Pain Foundation is a member of:

The Consumer Pain Advocacy Task Force (CPATF) which is comprised of national leaders and decision-makers from 16 consumer-nonprofit organizations that are dedicated to patient well-being and supporting the use of effective methods for pain treatment. The State Pain Policy Advocacy Network (SPPAN) first convened these leaders in March 2014 to organize a collective action effort to benefit people with pain. consumerpainadvocacy.org

SPPAN is an association of leaders, representing a variety of health care and consumer organizations and individuals, who work together in a cooperative and coordinated fashion to effect positive pain policy on the state level—policy that guarantees access to comprehensive and effective pain care for all people living with pain. Power of Pain Foundation is one of the original SPPAN partners. sppan.aapainmanage.org/

As POP Advocacy Director (POP 2011-12) and a SPPAN leader since 2013, locals would be working with me, as needed, to attend and represent us at the Capital.

We thank you all for attending today. We look forward to seeing you again next year. Please visit powerofpain.org for our education, awareness, advocacy and access to care missions.

<End>

#painPOP

#painPOP #popwcps #NERVEmber November 14, 2015 POPF

#painPOP #popwcps #NERVEmber November 14, 2015 3 After the conference we popped the pain out of ’em! #painPOP

#painPOP with attendees from WCPS

Published on Nov 14, 2015

#painPOP with some of the attendees from the POP’s West Coast Pain Summit 2015 for neuropathy awareness in #‎NERVEmber #‎ihavethenervetobeheard #‎doyouhavethenervetobeheard #‎powerofpain
http://PowerofPain.org/conditions #‎ShareAndMakeAware #‎ParticipateAndOrDonate

Additional photos can be found on the Power of Pain Foundation’s Facebook Page at facebook.com/powerofpain in the 2015 POP Events Album.

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Twinkle VanFleet, Lynn Green, Jacie Touart #popwcps #NERVEmber November 14, 2015 POPF 2 Lynn Green Medtronic, Twinkle VanFleet #popwcps #NERVEmber November 14, 2015 POPF Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Twinkle VanFleet – Advocacy Director (powerofpain.org) and Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com).

The 8 key areas of the Patient’s Bill of Rights

Information for patients

You have the right to accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, help should be given so you can make informed health care decisions.

Choice of providers and plans

You have the right to choose health care providers who can give you high-quality health care when you need it.

Access to emergency services

If you have severe pain, an injury, or sudden illness that makes you believe that your health is in danger, you have the right to be screened and stabilized using emergency services. You should be able to use these services whenever and wherever you need them, without needing to wait for authorization and without any financial penalty.

Taking part in treatment decisions

You have the right to know your treatment options and take part in decisions about your care. Parents, guardians, family members, or others that you choose can speak for you if you cannot make your own decisions.

Respect and non-discrimination

You have a right to considerate, respectful care from your doctor’s, health plan representatives, and other health care providers that does not discriminate against you.

Confidentiality (privacy) of health information

You have the right to talk privately with health care providers and to have your health care information protected. You also have the right to read and copy your own medical record. You have the right to ask that your doctor change your record if it is not correct, relevant, or complete.

Complaints and appeals

You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the actions of health care personnel, and the adequacy of health care facilities.

Consumer responsibilities

In a health care system that protects consumer or patients’ rights, patients should expect to take on some responsibilities to get well and/or stay well (for instance, exercising and not using tobacco). Patients are expected to do things like treat health care workers and other patients with respect, try to pay their medical bills, and follow the rules and benefits of their health plan coverage. Having patients involved in their care increases the chance of the best possible outcomes and helps support a high quality, cost-conscious health care system.

According to the presentation at the POPF Midwest PAIN Expo attendee’s learn the importance of the of the “Patient Bill of Rights” (“Patient Rights” 3). (et al.)

We look forward to seeing you next year!

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

Copyrights – Please be advised – Laws and Regulations

Posted by twinklev

So that the information I’ve previously provided in the post at the end of this page isn’t taken as inaccurate or babble, I’ve taken the time to compile the following for you so that there aren’t any misunderstandings. Links have also been provided so that you may learn for yourselves.

The First Sale Doctrine
“The physical ownership of an item such as a book, painting, manuscript or CD is not the same as owning the copyright to the work embodied in that item.

Under the First Sale Doctrine (Section 109 of the Copyright Act), ownership of a physical copy of a copyright-protected work permits lending, reselling, disposing, etc., of the item. However, it does not permit reproducing the material, publicly displaying or performing it, or engaging in any of the acts reserved for the copyright holder. Why? Because the transfer of the physical copy does not transfer the copyright holder’s rights to the work. Even including an attribution on a copied work (for example, putting the author’s name on it) does not eliminate the need to obtain the copyright holder’s consent. To use copyrighted materials lawfully, you must secure permission from the applicable copyright holders or a copyright licensing agent.

Duration of Copyright
The term of copyright protection depends upon the date of creation. A work created on or after January 1, 1978, is ordinarily protected by copyright from the moment of its creation until 70 years after the author’s death.

For works made for hire, anonymous works and pseudonymous works (unless the author’s identity is revealed in Copyright Office records), the duration of copyright is 95 years from publication or 120 years from creation, whichever is shorter.

For works created, published or registered before January 1, 1978, or for more detailed information, you may wish to refer to the public domain section of this guide or request Circular 15 ( “Renewal of Copyright”), Circular 15a (“Duration of Copyright”) and Circular 15t (“Extension of Copyright Terms”) from the U.S. Copyright Office Web site, www.copyright.gov.

Registration and Notification of Copyright
The way in which copyright protection is secured is frequently misunderstood. Copyright is secured automatically when the work is created and fixed in a tangible form, such as the first time it is written or recorded. No other action is required to secure copyright protection – neither publication, registration nor other action in the Copyright Office (although registration is recommended).

The use of a copyright notice is no longer required under U.S. law, although it is recommended. This requirement was eliminated when the United States adhered to the Berne Convention effective March 1, 1989. If a copyright holder wants to use a copyright notice, he or she may do so freely without permission from or registration with the U.S. Copyright Office. In fact, the use of a copyright notice is recommended because it reminds the public that the work is protected by copyright.

A copyright notice should contain all the following three elements:
The symbol © (the letter C in a circle), the word “Copyright” or the abbreviation “Copr.”
The year when the work was first created.
The name of the owner of the copyright.
Example: © 2005 John Doe

Public Domain
The public domain comprises all works that are either no longer protected by copyright or never were. It should not be confused with the mere fact that a work is publicly available (such as information in books or periodicals, or content on the Internet).

Essentially, all works first published in the United States before 1923 are considered to be in the public domain in the United States. The public domain also extends to works published between 1923 and 1963 on which copyright registrations were not renewed.

All materials created since 1989, except those created by the U.S. federal government, are presumptively protected by copyright. As a result, the chances are high that the materials of greatest interest to students and faculty are not in the public domain. In addition, you must also consider other forms of legal protection such as trademark or patent protection before reusing third-party content.”

The Campus Guide to Copyright Compliance, COPYRIGHT BASICS: WHAT IS COPYRIGHT LAW? Para 2-12 https://www.copyright.com/Services/copyrightoncampus/basics/law.html

Twinkle Wood-VanFleet

November 14 at 8:13pm · Edited ·

Copyright! For my friends, family and interested parties who continue to be violated.. For those of you whose works are being taken, altered, and your names removed from your pieces.

“Copyright protection exists from the moment a work is created in a fixed, tangible form of expression. The copyright immediately becomes the property of the author who created the work. Only the author, or those deriving their rights through the author, can rightfully claim copyright. ” For works created after January 1, 1978, is ordinarily protected by copyright from the moment of its creation until 70 years after the author’s death. For works made for hire, anonymous works and pseudonymous works (unless the author’s identity is revealed in Copyright Office records), the duration of copyright is 95 years from publication or 120 years from creation, whichever is shorter.

This means that many of my works are covered at an average of 100 years regardless of whether or not you know who it originated from. Those in my name are mine for 70 years after my death.

So while better protection may exist through the Library of Congress, people are not blind to knowing when they steal and alter what is not theirs. I can tell you exactly how to maintain proof without LOC records. Accidental violations sometimes happen when sharing someone elses work, do be mindful in this situation to mark it as “unknown” until which time the author , artist or creator can be credited. Removing credit from images, taking people’s lines from articles, poetry, lyrics and even off their Facebook comments is stealing.

If you think that public domain means you get to have it It does not! The term “public domain” refers to creative materials that are NOT protected by intellectual property laws such as copyright, trademark, or patent laws.

Be advised! ~Twinkle V.

(Names, likes, and shares have been removed to maintain privacy; the original is available at its posted location)

Comments

S.W. Thank you for posting this……I’m so tired of stuff being remade with their initials and no credit given to the real maker.

November 14 at 8:23pm

Twinkle Wood-VanFleet You’re most welcome, S! Thank you!

November 14 at 8:27p
K. L. I’m so tired of people stealing my crps tattoo pic and using it

November 14 at 8:33pm

Twinkle Wood-VanFleet All too often, K. They don’t care.

November 14 at 8:35pm

Twinkle Wood-VanFleet People create beautiful images and they are taken, altered, or re created as something new. People create amazing works of writing, intellectual thought and re create it thinking if they add a few words it’s theirs. It’s not. They need to cite the original.

November 14 at 8:33pm
S. W. I can post so many examples of this……..super sad!

November 14 at 8:35pm

Twinkle Wood-VanFleet We all learn from somewhere. It’s how knowledge is gained. We take what we learn and re invent our own thoughts, but all of what has been happening to people is too much. Too many people who spend time, their hearts, education, experiences, even their thought process……….. taken.

November 14 at 8:38pm
S. W.Very well said

November 14 at 8:39pm

Twinkle Wood-VanFleet Thank you, S.

November 14 at 8:42pm
B. I. Amen!

November 14 at 8:49pm

D O’N Thank you for posting this. I dont share a lot of my poems because of the very reason someone else might publish something I wrote

November 15 at 8:41am

Twinkle Wood-VanFleet Most welcome D. I know what you mean and it’s a shame that you don’t because you feel you can’t because they won’t be yours anymore. Everything that is yours, remains yours. I risk myself too sharing some, others are protected better. I finally decided that I’m not going to let other people who do these things keep me from what I love, enjoy, find peace and contentment in and what others enjoy reading, too. I know how to keep an eye on my work, where it ends up and any alterations. Most of us who create, whether it be articles, artwork, poetry, etc don’t mind our pieces being shared, all we want is for it to be kept in the original form and credited. It’s the proper way. x

November 15 at 10:31am
J. W. I often wonder about that in regards to photos I post. I post them for everyone to enjoy, but I would hate for someone to take credit for them. I should probably watermark them, but it kinda ruins the photo…

November 15 at 2:31pm

Twinkle Wood-VanFleet Right J! I’ve seen a few of your photos. Beautiful ones, too. And I know what you mean about watermarks. We just shouldn’t have to, please consider adding your c (name) in an area even though it’s already yours. At least if people use the share button it’s reasonable because it’s tracked directly from you, your original share. But people even removed that. The other day a lady posted a graphic and even though she shared it to me and others, I asked permission to re share, she didn’t even want credit necessarily because sometimes we share to just share, but it was important for me to credit her because for one it’s right and secondly I’m thankful for all I get to see, and I’m appreciative of time and heart each of you put into what you do, and I like to say thank you when I can. I know, well we all know for each other, we’ll never be able to get to everyone’s shares to thank, but when we can it’s nice. I’ll never be able to get to all of yours, there’s no way all of you can get to all of mine or each other’s either (too much activity ol/fb etc) but when we are able it’s nice.

November 15 at 2:42pm

D O’N I had someone take poetry I wrote from me and took credit for it.
So it rare that you see my poetry . Sometimes they change the words just a tad.
I would share more if I knew it wasn’t taken.
I will add though that when you do searches for quotes or pictures a lot come up without any ones name on the work.
I like the idea of putting unknown on something that’s not marked but then does it give someone the opportunity to say … I wrote that or that pictures mine ?

November 15 at 2:57pm

Twinkle Wood-VanFleet Yes and no D. Yes in that anyone can claim anything, the opportunity is always there to claim it, no in that when it comes to you being the actual writer up against them taking it or altering the piece they would have to prove it was theirs before it was yours. Most artists have proof simply because they were the ones who created it. Think about this. In this example, I’ll use only FB as an example with something shared that’s been shared no where else.. Something is posted on Facebook for the first time. You, me, someone else. Later at any point it re appears in someone else’s name. A record of proof has already been created. Your proof. Facebook itself is a record of proof in it’s own way. Each post is time stamped. How would the other person be able to claim authorship? The only way they could is to then claim they have an original in hard copy or digital form prior to sharing. Being on FB doesn’t allow others to take. Facebook terms and conditions grants FB uses but not individuals. And there the legal part begins and a judge will decide. Instead of going on and on, here’s a link that can help too, it refers to unknown authors and images from the web toward the end using MLA citations and “according to” http://uca.edu/writingc…/mla-basics/mla-in-text-citations/ smile emoticon

MLA In-Text Citations — Writing Center

MLA style uses in-text citations to give credit to authors when paraphrasing or quoting their ideas. In-text citations include two parts, the lead-in phrase and the parenthetical citation.

UCA.EDU

November 16 at 8:04am

Having spent nearly 40 years as a writer in one capacity or another, I’ve always been quite knowledgeable in this area. Having a publishing business licensed in the City of West Sacramento in the mid 1990’s and studying Corporate Publishing in 2005 assisted my knowledge even further. Every now and then I try to re share this combined knowledge.

There will always be someone who will try to take your original works from you, but remember there are steps they have to go through to prove they owned your words before you did.

I hope the above has eased you and I hope it has informed those who are inclined to snatch what doesn’t belong to them.

~Twinkle VanFleet

The Campus Guide to Copyright Compliance

COPYRIGHT BASICS: WHAT IS COPYRIGHT LAW?

https://www.copyright.com/Services/copyrightoncampus/basics/law.html

United States Copyright Office

A Department of the Library of Congress

http://www.copyright.gov/

Library of Congress

https://www.loc.gov/