Monday, September 30, 2013

Contest – Self Caricature – Deadline October 15th


My self drawing directly from my journal.


We are having a contest on self caricature pain drawings and the winner will have their drawing and their preferred signature line in the Winter Devotions of Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain.  

Here are the details:


Format of drawing:

  • Self caricature, drawn by you.
  • Black and white only.
  • Jpeg format.




Submitting your own self caricature

Scan it and save it to a file as a jpg, then attach it to your email with contest in the subject line and submit it to Submission-Contest@outlook.com.


Deadlines:

  • Phase I – All submissions – October 15th (2013)
  • Phase II – Top Three will be selected by an independent party, and will be uploaded via my blog http://fmcfstriggerpoints.blogspot.com/ by October 18th.
  • Votes tallied via my author FB Page  https://www.facebook.com/author.fibromyalgia.expert.pain.advocate in a note titled Caricature Contest, which will include a link to the blog with the top three drawings with assigned ID numbers.
  • Phase III – Votes on the top three will be collected between October 18, 2013 and October 25, 2013 and announcement of the winner with a 2-3 sentence signature line of their choice will be announced by October 26th via a specific link from my blog. 



Winner:

Everyone will really be a winner, because it is cathartic to do a self caricature, and the experts suggest it is possibly one of the best self reflection tools available.  You DO NOT need to be an artist; even stick figures can show emotion with the tilt of a line or words surrounding it.

The winning self drawing will have their caricature published in Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Winter Devotions and a signed copy of the book.


Again, attach your jpeg (picture format) to your email with contest in the subject line and submit it to:

 Submission-Contest@outlook.com.

September 2013, A Look Back at Pain Advocacy: Blogtalk by Celeste Cooper



“The task ahead of us is never so great as the power behind us.”
~ Ralph Waldo Emerson


Blogs directed at pain advocacy.

September is Pain Awareness Month -- Part III



 Check our other blogs to the right.  Move forward we shall.

Think adversity? See Opportunity!

~ • ~ • ~ • ~ • ~ • ~

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



Saturday, September 21, 2013

Free Kindle download tomorrow, Sunday, Sept. 22, 2013 - Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Fall Devotions (Revised) – Virtual Book tour


(Revised)

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

To end the virtual book tour, we are offering the book one last time for free as a Kindle download. Tomorrow, Sunday September 22nd, beginning at 12AM Pacific Time. Just follow this link

Don’t have a Kindle?  Get your free app here

~ • ~ • ~ • ~ • ~ • ~

“Essential and inspiring! puts us in touch with our unspoken and unacknowledged inner self-understanding that gets pushed aside when pain steals our attention. ”

-Jan Favero Chambers, President, National Fibromyalgia and Chronic Pain Association
(Inside the cover)

~ • ~ • ~ • ~ • ~ • ~

“This is an "uplifting" book that is well written. I even followed the author's suggestion and wrote my own poem!”
~Amazon reviewer

Read more about Fall Devotions, click here

~ • ~ • ~ • ~ • ~ • ~

Sneak Peek - Day Eighty-three - Concerns to Consider

When dealing with pain, we may have concerns:

  • Are we afraid of what we might discover?
  • Are we able to afford medications?
  • Are past experiences limiting trust?
  • Will treating symptoms get to the root cause?
  • How do we recognize, treat, and control underlying conditions?
  • Are we identifying aggravating factors correctly?
  • Do we have a metabolic disorder that might interfere with our progress?
  • .…. and more.


~ • ~ • ~ • ~ • ~ • ~

Available at:

AMAZON 
Paperback, here.
Kindle, here 

BARNES AND NOBLE  
Paperback, here

Goodreads, here.

This ends the virtual book tour. We hope you will take a few minutes to leave a review where you purchased the book or downloaded the free Kindle edition.

~ • ~ • ~ • ~ • ~ • ~

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.




Friday, September 20, 2013

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


 PART III - This could be the most import part of the sequence you read. Pay close attention and solicit help from someone without cognitive impairment if necessary.

When pain and disability is life limiting. The Seven Rules  (From For Pain in Pain at http://TheseThree.com)

THE SEVEN RULES

For various personal reasons, many people with chronic pain and invisible illness try to remain in the workforce despite their dysfunction. Why shouldn't we want this? We are defined by what we do, and it is depressing when that part of our life is threatened, we want to be financially solvent and be respected among our peers.  Many of us cling  to our jobs by our fingertips successfully, but we need help. In chapter seven “Approaching the System Systematically”  we discuss the programs available to assist us. They are: 
  • The Americans with Disabilities Act (ADA)
  • Five Areas of the ADA
  • The ADA General Rule—Statute 42 U.S.C. §12112(a) Qualified Individual, Essential Function, Reasonable Accommodation
  • United States Department of Labor (USDOL)—Equal Employment Opportunity, Undo Hardship 
  • The Equal Employment Opportunity Commission (EEOC)
  • Patient Rights 
  • Miscellaneous Programs and Help, such as  Workers’ Compensation, COBRA, Private Disability Insurance, Employee Assistance Programs (EAPs), ERISA, FMLA, Vocational Rehabilitation, and Temporary Assistance Programs
  • Confidentiality and HIPAA 

(Cooper and Miller, 2010)

Rule #1 - Know what programs are available.

The fact remains however, few employers will jump over backwards to meet your needs when there is a healthy person who doesn't require the accommodations necessary to manage work and chronic illness. In the book http://www.amazon.com/Integrative-Therapies-Fibromyalgia-Syndrome-Myofascial/dp/1594773238/ref=sr_1_1?ie=UTF8&s=books&qid=1267467759&sr=8-1
 (Cooper and Miller, 2010), we discuss how these programs work and don’t work for people with disability.  

The alternative – applying for SSA benefits

Programs such as Social Security Disability Insurance (SSDI), for people with a work history, and Supplemental Security Income (SSI), for the disabled without a work history, are available, but it isn't as simple as that.  The process has many rules (see links provided at the end).

So what happens when you fall off your own fiscal cliff? 

It is imperative that you have a paper trail (medical record) that documents specifics on your ability to function. For instance, multiple sclerosis is in the "Listing of Impairments" (Soc Sec Blue Book)  and now fibromyalgia is too.  However, that does not mean one with MS, FMS, or any other listing of impairment automatically qualifies for SSDI or SSI. The progression of the disease and how it affects you personally and your ability to perform work (SSDI) is what makes you eligible for benefits.  

Rule #2 - If it isn't in your medical record, it’s not so.

All of your symptoms and life modifications should be presented to your physician for your medical record. Doctors are very busy and one that supports you should be glad to have any of the various recording tools we present in our book.  (Cooper and Miller 2010)  This information will also be helpful if you need to appeal, most initial applications are turned down. See chapter seven for: WINNING A SSDI APPEAL - Getting Turned Down—What Next? 


Among other tools in chapter seven are:
  • Interaction Worksheet for Important Calls and Meetings [with the SSA]
  • Table for Determining Disability Status for Those Limited to Sedentary Work 
  • Table for Determining Disability Status for Those Capable of Light Physical Work


Rule #3 - Provide evidence of how your symptoms obstruct your daily living, and what alterations you have made to survive. Make sure documentation reaches your medical records.

MOST IMPORTANT! When entering the appeals process, an attorney that specializes in chronic pain and invisible disorders is worth their weight in gold.  The process is difficult at best and having the experience of someone who specializes in this type of law will help you evaluate if you have a medically determined disability, and they will know if you fall under SSDI or SSI. Theses specialized attorneys help you gather medical records as evidence, recommend physicians that specialize in evaluation of functional capacity, and other criteria necessary to win your appeal .  They will schedule hearings, apply for back pay and many other things you would not have the knowledge to execute.  If you have an attorney, you have a greater chance of winning than if you don't. They are knowledgeable on navigating the legal system and knowing what criteria is necessary to meet the Social Security Administration expectations. Disability attorneys are paid on contingency,  only if you win, so their incentive to determine if you have a case is genuine.

Rule #4 - Hire an appeal attorney that is familiar with chronic pain and invisible illness, you will be more likely to win your appeal.

Applying and going through the process of SSDI can cause great financial burden on our household. Things to be considered are loss of income, the stress of the process in general, and the cost COBRA insurance (which you should make every effort to keep because you will need continued documentation that your disorder is not improving while going through appeal.) 

Chapter Seven, "Approaching the System Systematically”  has all the information on what Social Security requires to make a determination.  Fill out the questionnaires at the end of each chapter, keep track of all the tests and doctors and the results on the various forms provided. Have your primary doctor give you their narrative report; you will have your ducks in a row. Our publisher has given permission to copy these documentation tools for your personal use. 

  • Medication Log
  • Symptom Inventory Survey
  • Anatomical Diagram of Pain
  • Health History Log
  • Treating Health Care Provider Log
  • Chronological Health Record

(Cooper and Miller, 2010)

Clarifying assumptions

I was shocked when I got a copy of my medical record from one of my specialists of 25 years. Unbeknownst to me, he consistently documented no changes in my medical record. I copied the “Residual Functional Capacity Assessment” (link at the end) and reviewed it with him. He filled it out signed it and put it in my medical record.  He knew all the things they were asking, but many times physicians are not savvy, instead they run the other way when asked for their input.  Reviewing your functional status is not only good for your medical record; it should be a periodic review for you and your physician, so you and he/she understands how pain and illness affects you. This is an easy tool to help everyone involved.

Rule #5 - Don’t assume anything.  Making the information available to your physician should be welcome and it helps you track your successes and failures too.

Functional Impairment

The Social Security Administration's (SSA) wants to see how illness affects your ability to function and they want objective measurable criteria. They are looking specifically at your ability to function in the work force taking into consideration your ability to speak English, your age, your education and your previous work experience.

Have you noticed a steady decline in the way you form words, transpose numbers, letters and words or have difficulty putting an intelligent sentence together?   It can be frustrating and life altering. The work that once took us an hour now takes us all day, possibly days and needs to be broken down in small manageable increments.  If you notice you consistently have to set a timer to remind yourself of something in 3 minutes, or leave items out as triggers to your brain to complete a simple task you used to take for granted, be sure you bring this up.  A neurocognitive exam is in order.  The exam will document attention, memory, recall, response to repetitive behavior, and how the results relate to others of your age, experience, and education. It should be administered by a forensic neuropsychologist who is known by the court, and they have tremendous credibility.   It will be bitter sweet seeing the results in black and white.  The psychological pain comes in having your disabilities validated, but it is also reassuring to know you are not off your rocker. 


Rule #6  - Brainfog? Get a neurocognitive exam.

  • What is your cognitive-neuro score? 
  • Does altered sleep interfere with your ability to cope, if so, how? 
  • How long does it take you to prepare simple tasks? 
  • Do you have to have medical equipment to carry on each day?
  • Are there days when you can’t drive and why?
  • Are you able to lift, carry, stand, use your arms for long periods, if not, why?
  • Are your symptoms affecting your relationships and how?
  • Do you have other conditions that affect your pain and function?
  • What adjustments have you made to accommodate your personal needs?


These are an example of what the SSA is looking for, there are more in the book, but the idea is to get you thinking about how your illness and pain are affecting you. Write down each thing as you notice it.  We evolve into this new person because we must, don’t lose sight of how your life is affected.  I mostly talk about how to cope, and say putting such focus on these things is unhealthy, but this is the time you must. as unpleasant as it is.  As I said before, the process is itself is difficult.

SSDI and Their Expert Witness

The SSAs own doctors said I should not do anything that requires repetitive long term motion of my upper extremities and hands, (boy do I ever know that) and that I should not stand or sit for prolonged periods. This was THEIR doctor. Yet in my denial letter they suggested I get a job as a "doll maker." Obviously the system is overloaded. Don't stop, file an appeal. 


Rule #7 - Don’t give up.

The Administrative Law Judge (ALJ) may ask for expert testimony from an independent source. Most of these experts do not have direct experience with invisible illnesses. Most of us go months or years without a diagnosis and have difficulty finding THE doctor that knows how to diagnose our condition, so you can imagine what the ALJ’s “expert witness” knows about how our illnesses affect our lives, let alone our ability to stick to the regimented schedule of work duties.  The laws protect us somewhat because the ALJ should give more weight to the opinion of the claimant’s treating doctor than to the opinion of one of their doctors. However, the judge’s expert witnesses have more impact on the ALJ’s decision when the claimant’s physician has not adequately addressed and documented key issues in your medical record. 


"When defeat comes, accept it as a signal that your plans are not sound, rebuild those plans, 
and set sail once more toward your coveted goal."
--Napoleon Hill

Helpful Links:

Americans with Disabilities Act ADA 
Equal Employment Opportunity EEOC 

~ • ~ • ~ • ~ • ~ • ~


Each part of this blog is discussed in detail in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: the Mind-Body Connectionby Celeste Cooper, RN and Jeffrey Miller, PhD.

Available at:

~ • ~ • ~ • ~ • ~ • ~

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

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


Tuesday, September 17, 2013

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 12th.  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 12th [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.




(Revised)



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

~ • ~ • ~ • ~ • ~ • ~


“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

~ • ~ • ~ • ~ • ~ • ~

“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)


~ • ~ • ~ • ~ • ~ • ~

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!

~ • ~ • ~ • ~ • ~ • ~

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.

Saturday, September 14, 2013

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




(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

~ • ~ • ~ • ~ • ~ • ~

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.

Friday, September 13, 2013

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 actionabout 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.

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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)



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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

Saturday, September 7, 2013

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!


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.


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“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)

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“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.


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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.

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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.

Celeste's Website

Celeste's Website
Click on the picture