A Sleepless Night

Sacramento is facing a storm. It’s already beginning. I can hear the rain on the windows and feel it run through me. On the bright side, I can literally feel nature, on the darker side why does everything have to be so loud? Amplified. I can’t sleep! I slept until after 3:00 p.m so I’m sure that’s not helping.

We need to leave out of here for our kids house in 8 hours. For one I need to soak in their tub. Ha! Two, I’ll already be there for my son to take me over to cut my hair.

Maybe that’s why I’m still awake. Because I’m not backing out from doing it this time. Anxiety? I’m actually doing something unique in the process. Perhaps others already have. In fact, I’m sure they have, but no one I know has or has even brought it up to me. I can’t tell though for now it’s a secret. I can’t just cut it off and leave it like that. It has to have an element of creativity and still be a part of me, at least. ~laughs

Okay, maybe I’m anxious about Sunday, too.

3 of my dogs are caught up on their shots and tagged. Done! Phew! I still have some really awesome acting opportunities via my casting portal. I haven’t given up those chances since they started rolling in and this time around it’s my choice to do or wait to do. I think. lol. Unbelievable opportunities really. The only difference between then and now is 25 years. Ouch, I know. But my age range is 30 to 60 and that gives me something I would have never had at 22 because at that time I would have been 16 to 30 at best. Woot!

My best asset is the multi ability to play various characters. I’ve had an accent since I learned to talk yet I’m a California girl so it never made sense and no one else around me spoke that way for me to pick up on their talk. I do clean it up for in person, sometimes the phone, but as I grew and diversity became me in other aspects of life, I also picked up slang terminology. Don’t we all? This is my blessing in acting. In Voice, I’m Mezzo. Also known as Mezzo-Soprano. Soprano and Alto. There’s never been anything about me singular. It’s always at least one more or opposites. Yin and Yang.

That’s some pretty deep shit for one who was suppose to be mentally and physically retarded. Who was bright enough to start college at 15 with an education in Law and Drama at the same time. Get it? Only certain mindsets can be either. The law has to be able to know a criminal mind enough (by their own instinct, thought and emotions) to do the job. They have to be both light and dark. And the actor has to be convincing enough in character and/or another persons story to become believable. Understand?

When I write poetry or lyrics not everyone will know who or what is being written about. Why? Because I write it from different perspectives. Some my own, some through the eyes of others or as the voice of someone else.

I love it like that!

My speech ability is improving again for the most part. For a long time I couldn’t talk without stuttering or forgetting on the spot.

I play memory games for recall. Some of my YouTube video shares may show thought, recall, or hesitation, but they aren’t so slurring or stuttered. Really, even though pain had been hard, I’ve continued to do some awesome things. Some of those began over a decade before I ever had CRPS.

When I first left iPain I told myself heal. Just heal. Then I started moving through the 5 Stages of Loss and Grief http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/ even though stage 1 was a consequence of my own actions.

As each new day began, or maybe I should say as each night ended, I would fight with myself over tomorrow. On one side I told myself just leave it all behind. On the other I told myself I couldn’t. It was after the fact that I tried to go back, even if a little, but I was assured that I was done. This was okay because it was me after all who changed it.

Consequences.

Then a couple of weeks later, wow.

We all know or should know that our choices today, may not ever be a choice we’d make tomorrow and choices of tomorrow shouldn’t necessarily effect or reflect on all that was in our yesterday. But they do.

Why? Human emotion. If I feel bad and someone else feels bad a – and a – = -.

In the same sense if each party is in acceptance + and + = +. Yet if one feels bad and the other doesn’t. – and + = negative.

I can make $1 be $5 not just at home, but in business also. I also know $5 can end up being only a dollars worth if not used right.

I’m a critical thinker. http://www.criticalthinking.org/pages/defining-critical-thinking/766 documented and like my grandson ‘Tai who’s been in GATE http://westmore.wusd.k12.ca.us/gateeducation and has received honor roll recognition since he began school (He’s 10), I was also part of the MGM (Mentally Gifted Minds) program growing up.

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What does all this mean?

I suppose it means

“It’s never too late to be who you might have been”

 

 

Stress’Less

Definitions of stress include the physical pressure, pull, or other force exerted on one thing by another; strain, mental, emotional, or physical strain or tension. In physiology, stress is defined as; a specific response by the body to a stimulus, as fear or pain, that disturbs or interferes with the normal physiological equilibrium of an organism. In medicine: A physical or psychological stimulus that can produce mental tension or physiological reactions that may lead to illness. Stressless is then the opposite of the above, having no stress, without.

Image Credit by Ozra September 24, 2015 Bay Area CA_1.

Image Credit by Ozra

 

Included in my letter of resignation to the International Pain Foundation was that “Stress is my weakness” right now. It had become my weakness since January of 2015. I had come to realize a long time ago that stress increased physical pain and uncontrolled physical pain instigated anxiety highs for me. I had struggled on and off with bouts of depression. Prior to this year diagnosed with mild recurrent major depressive disorder secondary to the injury that led to my CRPS and a psych sequela.  A confirmed diagnosis of PTSD, which I’ve shared a couple of times over the years, but have not discussed much of. My PTSD isn’t a solo diagnosis for a specific event, but rather multi diagnosis’ for multiple unrelated events.

It’s been a hell of a year! It’s also been heaven! Can you imagine? The best and the worse, the worse and the best happening simultaneously over a short period of time? Next month begins a year since that first night I can’t ever erase from my existence. Valentines Day becomes a year to the day, and the 3rd week in April is the second. I’m really only 8 months forward from it all. I really have a way to go in healing.

I think I’m doing pretty darned good for pain having not been addressed until a few weeks before I tried the Gohl Program (October 24th) and the Manual Ligament Therapy performed by Arik Gohl. After transferring my primary care to the Ellison Ambulatory Care Center and choosing the teaching facility so that students could learn from me and I could learn from them, I was sent to a new pain management facility rather quickly. This though only covered my upper body, not my lower. I was now opposite of what I had endured in the many years prior. I had been covered for my bilateral CRPS and SCS, but not for my upper extremities. I had a CT, learned of what had been occurring with my spine, the several new diagnosis’s, started PT, ended PT and I had 2 cervical steroid injections and decided after the program to cancel the 3rd.

Leaving iPain was abrupt and perhaps shitty, deactivating my Facebook account was also abrupt and spontaneous. Heck, declining followup appointments, injections, and mental health care was also on the spot. I know each of the perceptions that can be considered. 1. I’m reckless. 2. I’m Bipolar. 3. I only considered myself. 4. I’m playing games. 5. I’m crazy. 6. Out of character.

Let me help sort these out. 1. I’m not careless of consequences nor am I irresponsible. 2. I wouldn’t care if I was, but I’m not. 3. I considered everyone in those split seconds, including myself. 4. The only games I like to play are slots. 5. I love my crazy as do many others. 6. Perhaps, though it could have been in character all along.

What does that mean? In character all along? Pain, passion, purpose. Compassion, forgiveness, devotion, appreciation, thankfulness, gratitude,and diversity are all strong traits for me as is compliance, submission, and loyalty. Those can sometimes provoke conflict. But then again, I’m a different kind of duck.

As 2013 ended and I couldn’t change what I needed to, I couldn’t make someone else want to live, take care of themselves, after being given new life, or repair someone else’s frontal lobe from damage, or make tumors disappear in another and I couldn’t change the errors of others from a 2012/2013 healthcare related failure for myself, I rose and fell, but got back up each and every time.

Until I couldn’t, until I didn’t want to anymore.

In 2012 I had my Gall Bladder removed after a painful 20 hour wait in the Emergency Department. Acute or Chronic, the wait was painful. When I was taken back, I was scheduled for surgery immediately. I hemorrhaged during both surgeries a year apart.

 

I had never felt judgement in healthcare prior to this second removal. I had never been treated adversely or in any judgmental way. Ever!

A month ago, I would have never considered resigning as Advocacy Director and after being apart of iPain 5 years. On the contrary my only vision was remaining indefinitely.

“Don’t cry because it’s over, smile because it happened.” — Dr. Seuss

Fighting for your own life, while already fighting for others, up close and personal others, in addition to advocacy. And not knowing, or understanding, right in the midst of the end, who to choose, what to choose. Me or them. I can still hear the words that slipped from my lips to him that night. I can see it all so vividly and I can hear my own quivering voice say it to him so powerful that..

(Maybe I’ll share the rest of that another time)

But I survived. And then I survived again. And I was pissed! I had to be who someone else wanted me to be.. still. I couldn’t be unwell, not dangling, and make sure that I didn’t disappoint anyone, pretend it never happened because such events are unbecoming of family matters, social knowledge and sometimes even friendships or that online I had to be talked about in whispers and private calls and that would have all been okay as long as the record was correct. All it takes for accuracy is to ask the question. If someone doesn’t wish to answer it still doesn’t mean to create a scenario.

I was negative for all prescribed and illicit drugs, including all those extra’s screened for. I declined pain care by first responders and I declined pain management upon arrival at the hospital.

Consider that I had not been taking pain meds, opioid related, legal or illegal, benzo’s etc, and once injected in the ambulance there would have been no way to prove I had none of these substances in my system. Not even Marijuana. Understand? I don’t regret the 200 ml bottle of Vodka I finished just minutes before those acts of “I’m done!”. Nope!

All I’ve wanted to do is fight. I won’t go looking for confrontation, but if I’m confronted, hands. It’s really not as wrong as it seems. It just means that I protect my space and my ground.

Stress is down. Leveled.

Without, in regards to the internet.

“The two most important days in your life are the day you are born and the day you find out why.” — Mark Twain

I always knew why, I just didn’t want to know to what extent.

 


https://rsdadvisory.com/2013/05/18/endoscopic-retrograde-cholangiopancreatography-52113-due-to-gall-bladder-removal-fiasco/

https://rsdadvisory.com/2013/07/17/gall-bladder-fiasco-continued-and-hopefully-the-final-chapter/

NERVEmber – iPain Foundation

NERVEmber ™ brings awareness to the 150 plus conditions that have nerve pain as a symptom.The International Pain Foundation host the OFFICIAL NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber. Did you know the color orange is the international color for chronic pain awareness. In over 150 conditions that do have nerve pain as a symptom, RSD is one of the most painful.  Yet this condition is misunderstood, mistreated and often misdiagnosed.#NERVEmber is International Nerve Pain Awareness Month (including RSD, CRPS, Diabetes, Neuropathy and more). Each day during the month of NERVEmber the iPain (@powerofpain) will present an awareness task that we can all perform!This year we are also giving away prizes available for everyone who registers to participate and uses the hashtags, complete tasks, host or attend an event. The more you participate in OFFICIAL #NERVEmber events, the more chances you have to win! Check out all events going on in NERVEmber Event Calendar.You can bring awareness to conditions like #RSD #CRPS #Diabetes by posting everyday in #NERVEmber with @powerofpain #PaintTheWorldOrange. Using these tags will earn you chances to win some great prizes!During November, the International Pain Foundation’s #NERVEmber project is also supporting the #CRPSdayofaction, #RSDdayofaction, @theproject3x5’s #OrangeInitiative, A voice for the people with CRPS – CRPS RSD Australian Network, United in the Fight for CRPS Awareness, #ColorTheWorldOrange, #ColourTheWorldOrange.Want to be a #iPain Super Advocate for NERVEmber and have extra chances to win! … Register HERE Thank you for visiting NERVEmber.org and don’t forget to visit NERVEmber™ on FACEBOOK.

See original Source for links.

Source: NERVEmber – iPain Foundation

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

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

caadvocacyday-aug-2-16-npaf-cccc-ipain-castatecapital

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

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

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

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

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

twinkle-vanfleet-receiving-ipain-heroofhope-award-from-barby-ingle-musicmovesawareness-september-1-2016-los-angeles-ca-in-los-angeles-california

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

with-mr-dominick-spatafora-president-neuropathy-action-foundation-naf-musicmovesawareness

This year was an accumulation of heartache and hope.

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the-morning-after-mma-premiere-party-gayle-twinkle-and-barby-september-2-2016

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

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

Godspeed.

iPain Living Magazine | 12-Steps to Patient Empowerment

iPain Living 
12-Steps to Patient EMPOWERMENT

ipain-living-cover-ally-hilfiger-final-property-of-international-pain-foundation-1

Official Magazine of the International Pain Foundation

1. Empower by Barby Ingle

2. Responsibility by Twinkle VanFleet

3. Discussion by Sara Hobbs and Barby Ingle

4. Options by Amanda Green

5. Decisions by Emily Ullrich

6. Records by Melanie Lamb

7. Commitment by Dr. Melissa Geraghty, Psy.D

8. Ask by Dave Gray

9. Familiararity by Carin E Willis

10. Pain Management by Gayle M. Taylor-Ford LSCSW, LCAC

11. Insurance by Brian Levy, EMT

12. Rectify by Ken Taylor

Read iPain Living at:

https://powerofpain.org/ipain-living-magazine/

iPain Living – Flip Edition

https://s3.amazonaws.com/online.anyflip.com/mjqb/lssm/mobile/index.html#p=1


For more information or to order and purchase hard copies for your office, please contact: twinkle@internationalpain.org National Advocacy Director, International Pain Foundation.


iPain on Facebook

https://www.facebook.com/InternationalPainFoundation/

Twitter:  @powerofpain  | @iPainFoundation

CA [R] SB 1160 – Workers Compensation

Commentary- It’s important to establish responsibility for not only the injured worker which seems to be set forth much more clearly, but also for those who control the injured workers life in care, ongoing care, and quality of life. This must include employers, insurance adjusters, attorney’s and those who set back the process of diagnosis, healing, and access to proper and timely care for these injured workers without delay, denials, or stall tactics.

Number: CA [R] SB 1160 – Workers Compensation
Updated (Status 09/10/2016) Sponsor: Sen. Tony Mendoza (DEM-CA)
Introduced by Senator Mendoza
(Principal coauthor: Senator Pan)

ca-state-capital-photo-by-twinklev

February 18, 2016

An act to amend Sections 138.4, 138.6, 4610.5, 4610.6, 4903.05, 4903.8, 5307.27, 5710, 5811, and 6409 of, to amend, repeal, and add Section 4610 of, and to add Section 4615 to, the Labor Code, relating to workers’ compensation.

According to the Legislative Counsil Digest existing law establishes a workers’ compensation system, administered by the Administrative Director of the Division of Workers’ Compensation, to compensate an employee for injuries sustained in the course of his or her employment.
Existing law requires the administrative director to develop and make available informational material written in plain language that describes the overall workers’ compensation claims process, as specified.
This bill would require the administrative director to adopt regulations to provide employees with notice regarding access to medical treatment following the denial of a claim under the workers’ compensation system.
Existing law requires the Administrative Director of the Division of Workers’ Compensation of the Department of Industrial Relations to develop a workers’ compensation information system in consultation with the Insurance Commissioner and the Workers’ Compensation Insurance Rating Bureau, with certain data to be collected electronically and to be compatible with the Electronic Data Interchange System of the International Association of Industrial Accident Boards and Commissions. Existing law requires the administrative director to assess an administrative penalty of not more than $5,000 in a single year against a claims administrator for a violation of those data reporting requirements.
This bill would increase that penalty assessment to not more than $10,000. The bill would require the administrative director to post on the Division of Workers’ Compensation Internet Web site a list of claims administrators who are in violation of the data reporting requirements.
Existing law requires every employer to establish a utilization review process, and defines “utilization review” as utilization review or utilization management functions that prospectively, retrospectively, or concurrently review and approve, modify, delay, or deny, based in whole or in part on medical necessity to cure and relieve, treatment recommendations by physicians, prior to, retrospectively, or concurrent with providing medical treatment services. Existing law also provides for an independent medical review process to resolve disputes over utilization review decisions, as defined.
This bill would revise and recast provisions relating to utilization review, as specified, with regard to injuries occurring on or after January 1, 2018. Among other things, the bill would set forth the medical treatment services that would be subject to prospective utilization review under these provisions, as provided. The bill would authorize retrospective utilization review for treatment provided under these provisions under limited circumstances, as specified. The bill would establish procedures for prospective and retrospective utilization reviews and set forth provisions for removal of a physician or provider under designated circumstances. On and after January 1, 2018, the bill would establish new procedures for reviewing determinations regarding the medical necessity of medication prescribed pursuant to the drug formulary adopted by the administrative director, as provided. The bill would make conforming changes to related provisions to implement these changes.

The bill would, commencing July 1, 2018, require each utilization review process to be accredited by an independent, nonprofit organization to certify that the utilization review process meets specified criteria, including, but not limited to, timeliness in issuing a utilization review decision, the scope of medical material used in issuing a utilization review decision, and requiring a policy preventing financial incentives to doctors and other providers based on the utilization review decision. The bill would require the administrative director to adopt rules to implement the selection of an independent, nonprofit organization for accreditation purposes, as specified. The bill would authorize the administrative director to adopt rules to require additional specific criteria for measuring the quality of a utilization review process for purposes of accreditation and provide for certain exemptions. The bill would require the administrative director to develop a system for electronic reporting of documents related to utilization review performed by each employer, to be administered by the division. The bill would require the administrative director, on or after March 1, 2019, to contract with an outside independent research organization to evaluate and report on the impact of provision of medical treatment within the first 30 days after a claim is filed, for claims filed on or after January 1, 2017, to January 1, 2019. The bill would require the report to be completed before January 1, 2020, and to be distributed to the administrative director, the Senate Committee on Labor and Industrial Relations, and the Assembly Committee on Insurance.
Existing law requires every lien claimant to file its lien with the appeals board in writing upon a form approved by the appeals board. Existing law requires a lien to be accompanied by a full statement or itemized voucher supporting the lien and justifying the right to reimbursement, as specified.
This bill would require certain lien claimants that file a lien under these provisions to do so by filing a declaration, under penalty of perjury, that includes specified information. The bill would require current lien claimants to also file the declaration by a specified date. The bill would make a failure to file a declaration under these provisions grounds for dismissal of a lien. Because the bill would expand the crime of perjury, the bill would impose a state-mandated local program.
The bill would also automatically stay any physician or provider lien upon the filing of criminal charges against that person or entity for specified offenses involving medical fraud, as provided. The bill would authorize the administrative director to adopt regulations to implement that provision. The bill would state findings and declarations of the Legislature in connection with these provisions.
Existing law prohibits the assignment of a lien under these provisions, except under limited circumstances, as specified.
This bill would, for liens filed after January 1, 2017, invalidate any assignment of a lien made in violation of these provisions, by operation of law.
Existing law requires the administrative director, in consultation with the Commission on Health and Safety and Workers’ Compensation, to adopt, after public hearings, a medical treatment utilization schedule to incorporate evidence-based, peer-reviewed, nationally recognized standards of care recommended by the commission, as specified.
This bill would authorize the administrative director to make updates to the utilization schedule by order, which would not be subject to the Administrative Procedure Act, as specified. The bill would require any order adopted pursuant to these provisions to be published on the Internet Web site of the division.
Existing law requires a deponent to receive certain expenses and reimbursements if an employer or insurance carrier requests a deposition to be taken of an injured employee, or any person claiming benefits as a dependent of an injured employee. Existing law authorizes the deponent to receive a reasonable allowance for attorney’s fees, if represented by an attorney licensed in this state.
This bill would authorize the administrative director to determine the range of reasonable fees to be paid to a deponent.
Existing law provides that it is the responsibility of any party producing a witness requiring an interpreter to arrange for the presence of a qualified interpreter. Existing law sets forth the qualifications of a qualified interpreter for these purposes, and provides for the settings under which a qualified interpreter may render services.
This bill would require the administrative director to promulgate regulations establishing criteria to verify the identity and credentials of individuals that provide interpreter services under these provisions.
Existing law requires physicians, as defined, who attend to injured or ill employees to file reports with specific information prescribed by law.
This bill would revise those reporting requirements, as prescribed.
This bill would incorporate changes to Section 4610 of the Labor Code proposed by AB 2503, to be operative as specified if both bills are enacted.
Existing constitutional provisions require that a statute that limits the right of access to the meetings of public bodies or the writings of public officials and agencies be adopted with findings demonstrating the interest protected by the limitation and the need for protecting that interest.
This bill would make legislative findings to that effect.
The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.
This bill would provide that no reimbursement is required by this act for a specified reason.

For more information-
Bill Text
The people of the State of California do enact as follows:
Read the full text –
http://www.cqstatetrack.com/texis/redir?id=56c6cbba47

See references:

State Pain Policy Advocacy Network (SPPAN)
http://sppan.aapainmanage.org/state/california

Los Angeles Network of Care
http://losangeles.networkofcare.org/mh/legislate/state-bill-detail.aspx?bill=SB%201160&sessionid=2015000

LegInfo Legislature CA.Gov
https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160SB1160

CSIMS http://www.csims.org/?page=SB1160
Blog: Daisy Bill http://blog.daisybill.com/sb1160-shakes-up-workers-comp

~Update brought to you by iPain Advocacy Committee, International Pain Foundation internationalpain.org

patient-awareness-internationalpainorg-ipain

iPain Heroes of Hope – iPain Foundation

iPain Hero of Hope Awards 2016

THE INTERNATIONAL PAIN FOUNDATION IS PROUD TO ANNOUNCE TWINKIE – THE GUINNESS WORLD RECORD HOLDER FOR BALLOON POPPING DOG IS AN IPAIN HERO OF HOPE; THE NERVE TO BE HEARD 2016 AWARD RECIPIENT July 25, 2016 – Phoenix, AZ – The International Pain Foundation presents the Hero of Hope Awards annually. Celebrating our 10 year anniversary we have split the award into 4 categories for the first time; The Nerve to Be Heard, Corporate; Caregiver; and Pain Patient, to recognize more outstanding recipients who have demonstrated outstanding commitment to assisting and advocating for people with chronic pain diseases.

Nominations were solicited from the pain community of those who are making a significant contribution within the field of research, education, awareness, or patient assistance for each category.

Twinkie – The current Guinness World Record Holder for Balloon Popping Dog is a 2016 recipient of The International Pain Foundation’s I Have the Nerve to Be Heard Hero of Hope award. This past year we turned to Twinkie and her human Doree Sitterly, to help the pain community get our #painPOP heard around the world. With Twinkie’s help we are sharing stories of chronic pain patients who have ‘The Nerve to Be Heard”. In preparing for the Guinness World Record attempt Twinkie took the opportunity to help the pain community raise awareness about the challenges in receiving proper and timely care as a pain patient and the public health crisis it has created. Since launching #painPOP we have had individuals and groups participate from all over the world; including Africa, Australia, Israel and the UK in an effort to make a difference.

Barby ingle, iPain President, said, “Twinkie is making a difference in people’s lives through her unique talents. The inspiration and energy Twinkie provides in her iPainPOP helps to keep patients positive as we deal with our chronic pain challenges and learn how to become our own best advocate. Thank you to Twinkie and Doree for all you do to put a spotlight on chronic pain diseases and other chronic pain conditions.”

The other 4 award recipients will be announced live at the Music Moves Awareness World Premiere Party on September 1st in Los Angeles, CA.

The finalists in caregiver category: Gayle Taylor-Ford LSCSW, LCAC, Ken Taylor, Melissa Geraghty Psy.D..

The finalists in the pain patient category; Amanda Greene, Twinkle VanFleet, Melissa Geraghty, Psy.D., and Tenah Watts-Callison.

The finalists in the corporate category include Alignmed, Intellectric, and Neuro Drink. The Nerve To Be Heard finalists include Avril Lavigne, Billy Blanks, Jr, and Jennifer Aniston.

Twinkie will also be performing a live painPOP during the finale of our event.

Source: iPain Heroes of Hope – iPain Foundation

iPain Here of Hope Award

iPain Hero of Hope Awards

#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.

 

 

 

iPain Heroes of Hope – iPain Foundation

2016 iPain Hero of Hope Nomination Categories

http://powerofpain.org/ipain-heroes-of-hope/

ipain hero graphic

HERO of HOPE iPain Awards

Melanie McDowell Advocacy Hero of Hope Award

iPain Foundation presents the Melanie McDowell Pain Advocacy Award. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy and pain conditions. This could be within the field of research, education, awareness, or patient assistance.

Caregiver Hero of Hope Award

Caregivers represent service in areas such as nursing, certified nursing assistants, social services, certified medical technicians, therapy, activities, housekeeping, food service and volunteers. We honor these people who give of themselves and make a difference in the lives of those they care for in long-term care.

Corporate Support Hero of Hope Award

This person or group is recognized for being innovators & leaders supporting daily living with chronic pain disease conditions. This can be research for daily living aids, drug development, survey data collecting. Specific or non specific research for effective treatments in the chronic pain community.

The Nerve to be Heard Hero of Hope Award

Nominations are being accepted for those who Have the Nerve to be Heard. This person has been recognized for bringing awareness to the challenges of living with chronic pain in national or international media. Nominees could include patients, patient advocates, celebrity, legislators, professional Olympic athletes, etc.

Nominations for 2016 Hero of Hope awards are now open.

Thank you all for nominating someone who has made a positive difference in your life. We all know someone who has made a difference.  Whether its your life or someone close to you, we all make a difference. Nominations for people who are making a significant contribution within the field of research, education, awareness, and/or patient assistance are now open.If chosen to move on to the next round you will be notified and your nominee will be notified.

Additional information may be requested as needed by our panel of judges Nominations accepted between April 1 and June 30, 2016 Finalist chosen by iPain Gala Committee by July 15, 2016 Recipient will be chosen by the iPain Board of Directors between by July 31, 2016

Award winner will be announced in early Aug. 2016

Source: iPain Heroes of Hope – iPain Foundation

melanie-mcdowell-award-winners-previous-award-recipients1

Previous iPain Award Recipients


Please use the form above to formally choose your award nominee(s). You may nominate as many of your favorite Heroes in either categories as you like. There’s lots of Hero’s out there, show them that you recognize all they do for you, and others.    ~Twinkle

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.

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