Fine Lines

There can be such fine lines between doing and not doing, trying and not trying enough, managing time and wasting it, finding balance and not balancing at all.

I’ve driven now twice since not having drove but a handful of times in 17 years. While both times were only a few blocks away it is a starting point. Next time I’ll turn left and go down farther to the shopping center about a mile from home. Most likely repeating that quite a few times before trying further.

I’ve hit a few lows in wondering if all this is just too good to be true. This is because in order to maintain pain relief from the original CRPS Type 2 diagnosis and the several secondaries along the way, I have to do physical routines daily in order to keep it from ever being what it had become. These routines can cause their own pain because of the lack of activity and movement as a result of the injuries and illnesses that either initially or had eventually overcame me. Many of those things that I did to comfort myself from reaching the edge were some of the same things that were to my own detriment. Hanging my legs off the bed in order to try to sleep because my feet and legs were either too swollen, allodynia, hyperalgesia, burning etc. Using pillows, several, in order to prop myself into positions to ease pain, but at the same time it taught my body to develop even more damage.

Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better. ~Samuel Beckett

We aren’t taught how to be able to care for ourselves in simple manners that are the greatest of all. We’re told go exercise, lose weight, quit smoking (if you do) and that’s about it anymore. Great advice, but it’s only advice. There isn’t any teaching in it and people leave still wondering how, how in all of it. If you have chronic pain of any type it’s because something in you, illness or injury has lasted beyond 3 months (used to be 6 months for that classification).

Some people do get the pain medications, the opioid management, pain management, lumbar or cervical block injections, procedures etc. Yet none of these get people healthier again. None of them teach living with pain. They either disguise pain awhile, fail, or side track a person from learning how to themselves. Other medications such as SSNRI’s and Anti Seizures such as Cymbalta and Neurontin are over prescribe, handed out like candy and more adverse than the opioid itself. I promise you that. Opioids taken responsibly is less a problem than the lifetime problem that stays with you long after getting off those other types. We may have natural opioid receptors in our brains, but our brains (and minds) aren’t meant to be altered to the point future damage.

I’m not anti opioid.  I’m anti leave someone where they are when there are other options in relief that aren’t suggested or believed in by mainstream western medicine. I believe in CAM or Complimentary and Alternative Medicine. I believe in the Gohl Program. I believe in Integrative Pain Medicine.

Yet these services are rarely offered, or are not covered by insurance. I myself was denied for Acupuncture my second year into all this. (2003). I could have been cured, or in remission right away, but instead we keep people bouncing the healthcare systems, costing billions, left disabled, unable to contribute to society, getting sicker when we have the capability to get people back into their lives. If we do, even more billions are lost in profits, revenues and work for the working class. Damned if you do, damned if you don’t and that’s the world we live in. If it’s not about me it’s about you. Will it ever be about us? I already know the answer to that.

I’m glad that The Academy of Integrative Pain Management previously The American Academy of Pain Management has merged the concept of healing by both standards of care. I’m thrilled to have been a State Pain Policy Advocacy Network Leader (SPPAN) which is a project of of the AIPM/AAPM for several years. I’m happy to have been former California Ambassador, Executive Board Member, Advocacy Director and Healthcare advisor for the International Pain Foundation 2011-November 2016. I’m happy to still be a Medtronic Patient Ambassador. I’m glad to have represented iPain as a member of the Opioid Prescribing Taskforce via the Medical Board of California and for being 1 of perhaps 3 patient advocates who were apart of the Revised Standard Guidelines for Prescribing Controlled Substances For Pain. I’m happy that I attended with and testified on behalf of pain patients with the California Medical Association (DeSaulnier)

I’m not happy that I fell hard in the midst of the CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016 as they were being implemented, recommended and circulated. The Guidelines for Prescribing Opioids for Chronic Pain CDC. I’m blessed to be part of the public record, written and on the last call pertaining to the Guidelines. The call that determined whether or not to enact the recommendation. Which had been determined before the call had ended in case you didn’t know.

Instead of saving lives and allowing physician’s to care for their patients under their own oath it instilled fear in providers to prescribe or even address pain at all. I do not care that the Guideline’s were meant for primary care doctors because it caused fear for all doctors including pain management specialists.

I have to be a responsible patient, yes? I have to be in compliance, yes? Yet there is little to no responsibility or consequences for non compliance in others or those who believe they are above anyone else. Everybody’s pain day will come, if even by old age alone.

I’ve lost my reputation online, but offline my words are different. I’m different. This doesn’t mean I’m a different person it means that perceived perception, written content and context is taken as you will. Believed or Imagined. Generally just a fantasy in your own minds.

I’m diverse.

Online I no longer care. I’m both polite, knowledgeable, caring and I’m blunt, potty mouthed and adverse. Yesterday was the 1 year anniversary to the second time I attempted suicide as a result of pain and errors and not just my fear in it all, but the fear in overdose, the fear to prescribe, the fear to keep your medical licenses, the fear of the DEA, the fear of scrutiny, the fear to take care of your own families and I actually understand. I actually feel your side of it. I feel you when you’ll do almost anything to maintain your reputation even if you’ll lie to do it.

When you can feel my husband of 31 years side of it, or my 3 children’s broken heart in it.

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Maybe I’ll care again the same way I used to. Though I hope not because I really cared too much about everyone else, what ever one else needed, or wanted. Right now it’s all about me and overcoming the challenges of living through what I can’t ever change for me in this lifetime, or what I can never take back in the option of suicide, but I can still help change it for others.

They are fine lines, after all.

 

 

 

 

 

 

 

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.

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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.

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

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This year was an accumulation of heartache and hope.

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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

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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)

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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

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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

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.

Read the entire article at:

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

Chronic pain, opioids, addiction and controversy

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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.

 

 

 

Ohana (For Dr. Earl Bakken)

by Twinkle VanFleet

Twinkle VanFleet 2015 Bakken Invitation Award Honoree_1

Front and back

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

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

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

for…

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

7, 8, 9
Losing time
Sharing
Your paradigm

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

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

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

Got you
Got us
Got me
superfluous

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

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

For Dr. Earl Bakken, Medtronic Philanthropy, #LiveOnGiveOn

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

Mahalo

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

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