Supporting the Center for Practical Bioethics Initiative and Patient Powered Research Network Pain Action Alliance to Implement a National Strategy in Kansas City (PAINS-KC)

Side note: If you are a pain patient that resides in the Kansas City or surrounding area, please leave a comment on this blog so I can give up specifics regarding the next meeting

How fitting that the opportunity to support the Center for Practical Bioethics initiative would arrive during “Pain Awareness Month.” Following is my letter as a patient participating in PAINS-KC.

RE: Patient Centered Outcomes Research Institute (PCORI)

The Pain Action Alliance to Implement a National Strategy in Kansas City (PAINS-KC) is an emerging patient-powered, outcomes and clinical data research network (PPRN) based on a collaborative, community-driven, community-based participatory research model.

As participants and patients in this patient powered research network, PAINS-KC, we gather together united in an effort to change the way pain is “perceived, judged, and treated” as outlined in the Institute of Medicine Report “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.” We are excited that The Affordable Care Act makes provisions for the Patient Centered Outcomes Research Institute (PCORI) in an effort to promote a new approach to research -- one that is patient directed.  We feel privileged to have an opportunity to use our voice to influence research on therapies, coordinated care, alternative and integrative medicine, and to receive quality care without bias. These are principles we believe those at the Center for Practical Bioethics holds in their hands and in their hearts.

We are an eclectic group from the greater KC area which includes local pain group leaders, and patients suffering with a variety of chronic pain conditions, and we have come together for this collaborate effort.  We want to be part of the transformation. We want to work collectively with anyone who is willing to promote us in an effort to seek patient outcome based research that will solve the epidemic of untreated or undertreated pain. We understand, and we want our providers to understand that we are more than our pain, and that pain affects us physically, emotionally, socially, financially, and spiritually.   Each of us has our own ideas based on our individual experiences, and for the first time, we will be able to use our voice to focus on research that will answer questions posed by pain patients collectively. It will be our voice that decides what research is done, but we also know this can only be accomplished as a collaborative effort.

We believe that we have the right to moral and ethical treatment of our pain, that we have the right not to be judged because we are in pain, and that we have the right to treatments focused on improving our outcome; those that fit within our own conceptual framework. In an effort to promote our beliefs, we advocate for research, not only for ourselves as patients in pain, but for over 100 million Americans. Not only pain patient in Kansas City, but EVERY patient that suffers with intractable pain deserves access to the same treatment. We believe we can set an example that will resonate across America, and we can do that best by participating, despite the obstacles we face every day. Never before have we had the opportunities provided by the vast experience and abilities offered by the many organizations and health centered research organizations, healthcare institutions, and data bases that come together to support the Center for Practical Bioethics in this endeavor. We are privileged to have the support of so many as outlined in “Executive Summary” submitted in an effort to obtain the PCORI grant.

Sincerely, Celeste Cooper

The legacy of Thomas Hennessy Jr –Tribute to an Advocate by Celeste Cooper

Photo from Cort Johnson interview.

“Tom,” as many of us knew him, once had a thriving career in sales before he was struck down with what is known by many as chronic fatigue syndrome and chronic Lyme’s disease.  However, Tom never stopped his tireless advocacy for those suffering from invisible illnesses that cause disability and hardship. So it is only fitting that we give tribute to a great advocate.

Tom was a go getter, a blunt speaker, but proficient. He used his voice, time and talent to raise awareness even though he suffered and struggled like so many of his peers in the world of chronic illness. He fought for recognition of chronic immunological and neurological diseases including, myalgic encephalomyelitis/CFS, fibromyalgia, multiple chemical sensitivity, Lyme’s disease, Gulf War Syndrome and other overlapping disorders he felt deserved awareness.

Tom was not only proficient, he was highly intelligent, and never missed a beat.  Some might call him crass, but all would agree he was effective. He chose his battles well and used his disdain for the way people were treated. He used his anger regarding the ignorance and complacency of many as fuel for his mind, even when his body was failing him. When he could, he used his unique and colorful public speaking skills to bring awareness, and he was adamant about a name change for “chronic fatigue syndrome.”

Tom was the founder of international awareness day for Invisible Illness, May 12^th.  In an interview with Cort Johnson (2008) Tom said, “After reading Byron Hyde’s great book on the history of Myalgic Encephalomyelitis, I decided to use his Birthday, and lo and behold, May 12^th [thought to be] was Florence Nightingale’s birthday.” How fitting.

It doesn’t stop there; Tom was also the founder of R.E.S.C.I.N.D. (Repeal Existing Stereotypes for Chronic Immunological and Neurological Disorders.) This author signed a petition initiated by R.E.S.C.I.N.D. some 13 years ago along with thousands upon thousands of others. The stories with those signatures are heart wrenching, and Tom did all he could do to spread our voice. Little did this writer know that we would meet again in the virtual world, and that we would exchange personal emails on various advocacy issues.

Tom always supported other advocates. He was always concerned that the ball would be dropped on raising awareness for ME/CFS, FM, GWS, Lyme’s and other clustering invisible illnesses. He knew only too well how these illnesses can take a person with strength of character and a thriving career and grind their human dignity into the ground. Therefore, he seized yet more opportunities by making contributions to the NIH committee Chronic Fatigue Syndrome Action Committee, CFSAC, even when he was so ill he could hardly hold up his head. At one point he took on the CDC, and no doubt he made his points clear.

Tom was never one to mince words, he made this writer laugh on many occasions with his bold and powerful statements, but he also made people think. Today, the movement continues for a name change. It’s here, it is recognized by the CFSAC that chronic fatigue syndrome will be called myalgic encephalomyelitis/chronic fatigue syndrome. But the work isn’t done; now the “label” must be embraced by every healthcare provider and researcher. You did this Tom!

Tom was an advocate who spoke brilliantly on the Larry King show adding his special flavor for a battle from which he would never back down. He would describe himself as a mover and shaker and that was apparent in his vibrant way of speaking. When he spoke, you were never left wondering where he stood with his advocacy. On his Linked-In profile (always connected), he said he loves fast cars, beautiful women, great jazz, charity concerts, travel, great food and wine! That should come as no surprise, and I have seen pictures to prove it.

Tom was a true advocate; he inspired many, and he never stopped despite many obstacles sent his way. Tom made a difference for many patients, some of which he never knew. The legacy is to never give up.  Help Tom live on by continuing the work to raise awareness. Honor this great advocate’s legacy by putting action into your words. Use your time and talent, you have them. There could be no better tribute to this man called friend by many.

Written by Celeste Cooper, friend and fellow virtual advocate

http://TheseThree.com

Virtual Book tour – Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Fall Devotions (Revised) – See what others are saying and get a sneak peek.

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain-

FALL DEVOTIONS 

(Revised)

During the initial launch, Fall Devotions trended at #1 in pain management and #3 in motivational Kindle books.

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“I already bought the earlier book, "Integrative Therapies for Fibromyalgia, Chronic Fatigue and Myofascial Pain", so I got this on the recommendation of my pain specialist. It's nicely done and very helpful. The authors give suggestions, assignments and advice on a page per day basis. I like the format because I can focus on one thing at a time to help myself with my chronic pain condition. I can also go back and review information and rate my progress. I think this is a good tool for participating in my treatment.”

~Amazon reviewer

Read more about Fall Devotions, click here. 

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“This book is a delight. From the dark world of pain and suffering comes the voice of human courage. For so many people who struggle with chronic pain, and the devoted friends who watch them and hold them, this is the map to guide them on their journey. Each page is a lamp to light the path. Keep this gentle book by your side and read it often with the one who loves you. Thank you Celeste and Jeff for your book, it is a source of strength for the soul.”

-Dr John Whiteside MBBS, BSc, registered medical practitioner specializing in pain and trained by Dr Janet Travell.  (Australia)

(Inside the cover)

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Sneak Peek - Day Fifty-seven - Goals for the Soul Day

Like achieving any goal, we need a plan.  A few tips on becoming more spiritual.

See the good.

Wag more, bark less.

Practice prayer and meditation.

Become more open to achieving spiritual awareness.

Focus on the good of mankind.

.…. and more.

~ • ~ • ~ • ~ • ~ • ~

Available at:

AMAZON 

Paperback, here.

Kindle, here 

BARNES AND NOBLE  

Paperback, here. 

Goodreads, here.

We hope you will take a few minutes to leave a review where you purchased the book.

STAY TUNED, ONE LAST FREE DAY COMING SOON!

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Other books by Celeste Cooper and Jeff Miller:

C. Cooper and J. Miller. Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain. [ Series]. (Blue Springs, MO, ImPress Media, 2012 – 2014). Available here.  

C. Cooper and J. Miller. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind body Connection.  (Vermont: Healing Arts Press, 2010.) Available here.

Books also available at major online retailers.

4 week Virtual Book tour – Fall Devotions (Revised) – Week Two by Celeste Cooper

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain-

FALL DEVOTIONS 

(Revised)

During the initial launch, Fall Devotions trended at #1 in pain management and #3 in motivational Kindle books.

“Celeste Cooper thoughtfully shares her experience with chronic pain to help empower others to wholeheartedly live a more fulfilling and mindful life. ‘Embrace what we cannot change and strive to change the things we can…’ She wittingly shares healthy action strategies to help set focus on “glory days” and less on the pain. With heartfelt passion and self-awareness, Celeste and Jeff help to inspire others living with chronic pain.”

- Barbara Ficarra, RN, BSN, MPA, Founder Healthin30.com, Health Educator, Award-Winning Broadcast Journalist, Featured Writer The Huffington Post, Sharecare Editorial Advisory Board  

(Inside the cover)

~ • ~ • ~ • ~ • ~ • ~

This is a great book, simple and effective! When you live in pain it's easy for the world to seem like it's falling apart. Waking up each morning in pain doesn't really help your focus, other than focusing on the pain itself and then building our day around the pain. It seems that we forget about all of the life that is going on around us and what it has to offer. This book is a reminder of all that life has to offer when you're losing focus. The book is well-written and easy to read. +1 for anyone needing help with kick starting their days.

~Amazon reviewer

Read more about Fall Devotions, click here. 

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Sneak Peek - Day Forty-three

Terms in the Company of Pain - Neuralgia

 Neuralgia is pain caused by a disturbance of normal nerve function.

 Exercise:

Imagine your nerves in a bundle and they are all tangled up in a ball.  Now imagine, that ball is floating in a pool of soothing liquid.  As the ball starts to relax, it untangles and each nerve starts to leisurely unwrap until they are all resting on top of the pool. ….
and more.

~ • ~ • ~ • ~ • ~ • ~

Available at:

AMAZON 

Paperback, here.

Kindle, here 

BARNES AND NOBLE  

Paperback, here. 

Goodreads, here.

We hope you will take a few minutes to leave a review where you purchased the book.

~ • ~ • ~ • ~ • ~ • ~

Other books by Celeste Cooper and Jeff Miller:

C. Cooper and J. Miller. Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain. [ Series]. (Blue Springs, MO, ImPress Media, 2012 – 2014). Available here.  

C. Cooper and J. Miller. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind body Connection.  (Vermont: Healing Arts Press, 2010.) Available here.

Books also available at major online retailers.

September is Pain Awareness Month – See what this advocate is doing – Part II by Celeste Cooper

Moving Forward, Making a Difference

The Pain Action Alliance to Implement a National Strategy PAINS/Project

(from For Pain in Pain at http://TheseThree.com)

PART II

Advocates are coming together to address the needs of our society, in particular, the needs of approximately 100 million Americans who live in chronic pain. The PAINS Alliance, an initiative of the Center for Practical Bioethics (here)  believes that the only way to realize transformation in the way pain is perceived and treated in America is "to combine the collective power of organizations and those they serve — people living with pain — in a sustained effort to improve the delivery of pain in America." I am pleased to be a participant in this most important, energetic, and patient focused alliance of influential organizations and individuals.

Please see the PAINS Policy Brief to see exactly what we are about and how what we do could affect you. You can find the “Brief” through my website here.

This collective and integrative group has a mission to advocate for and act collectively to actualize the recommendations set forth in the Institute of Medicine (IOM)  report “Relieving Pain in America, A Blue Print for Transforming Prevention,Care, Education and Research. Those who participate believe it is our vision that all Americans living with pain will have access to integrated pain care consistent with their goals and values.

“Continued emotional support is vital to the functioning of a family member 

in pain and to aiding in his or her rehabilitation.”

– INSTITUTE OF MEDICINE, RELIEVING PAIN IN AMERICA, 2011

The Pain Action Alliance to Implement a National Strategy website provides information about how PAINS works, is funded, who we are as educators and policymakers, and how we are coming together to affect change. It is clear that it is the patient at the hub of transformation. 

The PAINS website includes resources, such as understanding pain,  finding support,  exploring research,  taking action, about policymakers, what’s in the news, and much more. I hope you will take a few minutes to  look around and see how people are coming together for you, for me, and the millions of other American’s that may feel lost and without resources.  The later is no longer the case.

Dr. Martin Luther King, Jr said it well: 

“Change does not roll in on the wheels of inevitability, but comes through continuous struggle. 

And so, we must straighten our backs and work for our freedom. 

A man can't ride you unless your back is bent.”

You, the patient, can help our endeavor by following the PAINS website, http://PAINSProject.org, and share the valuable information there with your legislators, advocates, and fellow survivors of pain. You are the hub, the core, and the axis that makes this wheel turn.

~ • ~ • ~ • ~ • ~ • ~

See if there is a steering committee participant in your area you might contact to support and encourage.

Myra Christopher, Steering Committee Chair, Kathleen M. Foley Chair in Pain, and Palliative Care at the Center for Practical Bioethics (Member of the IOM Pain Committee)
 Daniel B. Carr, MD, FABPM, FFPMANZCA (Hon.), Director, Program in Pain Research, Education and Policy Tufts University
 Janice Chambers, Founder and President National Fibromyalgia and Chronic Pain Association
 James Cleary, MD, FAChPM, Associate Professor of Medicine, University of Wisconsin Director, Pain and Policy Studies Group
 Lenore Duensing, Executive Director American Academy of Pain Management
 Katherine Galluzzi, DO, Professor and Chair of the Department of Geriatrics, Philadelphia College of Osteopathic Medicine, American Osteopathic Association
Jim G. Lemons, Ed.D., Founder and Director The Lemons Center for Behavioral Pain Management
 Martha Menard, PhD Academic Consortium for Complementary and Alternative Healthcare
 Chris Pasero, MS, RN-BC, FAAN, Pain Management Educator and Clinical Consultant
 American Association of Critical-Care Nurses
 American Society of Pain Management Nursing
 Richard Payne, MD, John B. Francis Chair in Bioethics-Center for Practical Bioethics
Esther Colliflower Professor of Medicine and Divinity-Duke University, (Member of the IOM Pain Committee)
 Joe Pierle, Executive Director Missouri Primary Care Association
 Orvalene Prewitt, Patient Representative Program Coordinator, Missouri Regional
Arthritis Centers – KC RAC
 William F. Rosenberg, MD, Founder Pain Relief Center, Research Medical Center
 Jason Schwalb, MD, Joint Pain Section, American Academy of Neurological Surgeons
and College of Neurological Surgeons, Department of Neurosurgery – Henry Ford Medical Group
 Jennifer Wagner, Executive Director, Western Pain Society
 Lynn Webster, MD, Medical Director and Founder Lifetree Clinical Research & Pain Clinic
 Lonnie Zeltzer, MD, University of California at Los Angeles, (Member of the IOM Pain Committee)

~ • ~ • ~ • ~ • ~ • ~

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com

September is Pain Awareness Month–See what this advocate is doing–Part I

PART I

Celeste on pain: The Goal, the Patient, and Considerations of a National Movement Regarding Pain

 by Celeste Cooper 

(here from "For Pain in Pain.")

 

Whether you seek traditional, alternative or integrative pain management, your provider should always focus on one thing, improved patient outcome. This should be a shared goal in medical management, and it should include a patient centered plan with emphasis on patient and physician education, awareness, and ethical preservation of the patient’s right to choose. These goals are a moral obligation.  We know from history, it is a primal instinct to preserve life and avoid pain, and this instinct goes far beyond rational thought.

Inadequately treated pain of any kind has two potential consequences: an epidemic of suicide, or an upsurge in underground activity.  (see "Walk a Mile in my Shoes").  Removing medications proven safe when used appropriately, and not reimbursing for helpful therapies validated by research, throws the patient into a vast abyss. (see  Fighting for the right of choice. RE: PROPS)

As an activist, registered nurse and patient, I have concerns. Rising healthcare costs affect us individually and as a society. We are not in a position to waste healthcare dollars, whether they be for treatment, research, or costly prescriptions.  We are forced to work within a system devoid of a plan for addressing the physical, physiological and social aspects associated with chronic pain. This same system has set out to deprive us of low cost, yet effective, medications and denies reimbursement of integrated therapies proven to help. Is it any wonder we feel as though our hands and feet have been shackled and we have been thrown out to sea as shark food? What kind of society criminalizes all patients and physicians because of the unethical and/or abusive behavior of a few? 

Hear what Dr Oz and his guests have to say about the over-prescribing and misprescribing of antidepressants, including their use for treating pain. - And they don't come cheap. - It has become a multimillion dollar business and I can assure you, patient outcome is not the goal. This has been my band wagon, and I am happy to see Dr. Oz and other concerned physicians climb aboard. See my blog, Who Should Be Prescribing Our Pills? here 

For direct links to the four part series on this issue by Dr Oz, please visit here and scroll to the bottom of the page.

We want to be seen as people, not defined by our condition.  We want our rights, for which we will take full accountability. We want all the tools necessary to achieve our best life despite living every day in pain. Don’t blame us; blame the system; it’s time for change.

See:

Relieving Pain in America a Blueprint for Transforming Prevention, Care, Education and Research, here.

Oral Presentation to the H.E.L.P. Committee on February 14, 2012
Philip A. Pizzo, MD

Stay tuned, more to come.

4 week Virtual Book tour – Fall Devotions - Week One

Virtual Book Tour!

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain-

FALL DEVOTIONS 
(Revised)

by Celeste Cooper, RN and Jeff Miller, PhD

During the initial launch, Fall Devotions trended at #1 in pain management and #3 in motivational Kindle books.

~ • ~ • ~ • ~ • ~ • ~

“The goal of living with any chronic illness is to focus on the living and move the illness to the periphery. This book beautifully collects the wisdom of the author and of the ages as daily exercises to focus on life, growth, and health despite the presence of pain. Best wishes to all who use this book to reclaim life day by day.”

- Patricia Geraghty, RNC, MSN, FNP-BC, Sharecare Editorial Advisory Board
(Inside the cover)

~ • ~ • ~ • ~ • ~ • ~

“Excellently produced, in short chapters, ideal for anyone suffering Chronic Pain to use - Uplifting quotations, thoughts - Well-formed and helpful diary-form record of pain and relief, ideal for presenting to Pain Management Personnel - Positively and empathically written, with the sufferer in mind - Highly recommend.”
~ Amazon reviewer

Read more about Fall Devotions, here.


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Sneak Peek - Day Twenty - Challenging Your Brain Power

Chronic pain interferes with sleep; lack of sleep interferes with thinking straight; and some disorders cause brainfog.

Tips for saving cognitive function:

• Give yourself plenty of time.
• Solicit help from friends and family when in crisis.
• Practice the suggestions on organizing you found in this book.
• Write things down in the same place every time.
• Assess how much is too much…. 
• and more.

~ • ~ • ~ • ~ • ~ • ~

Available at:

AMAZON 

Paperback, here.

Kindle, here 

BARNES AND NOBLE  

Paperback, here. 

Goodreads, here.

We hope you will take a few minutes to leave a review where you purchased the book.

~ • ~ • ~ • ~ • ~ • ~

Other books by Celeste Cooper and Jeff Miller:

C. Cooper and J. Miller. Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain. [ Series]. (Blue Springs, MO, ImPress Media, 2012 – 2014). Available here.

C. Cooper and J. Miller. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind body Connection.  (Vermont: Healing Arts Press, 2010.) Available here.

Books also available at major online retailers.