Friday, May 29, 2015

Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, SUMMER DEVOTIONS

Summer is just around the corner, and with it comes challenges for the person living with chronic pain and illness. Being prepared to face each day, sometimes each moment, is important for maximizing the many aspects that confront the person living in pain. Following is information on SUMMER DEVOTIONS in the Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain series.

About the Book 

By focusing on each summer day, the authors send their readers on a personal journey that allows them to restructure their personal experience with pain. In the foreword, Erica Verillo says “...Organized into a “book of days” each chapter offers a combination of practical coping advice – how to manage the sleep disorder that often comes with chronic pain, dietary considerations, and how to review the effectiveness of treatments – information (what do all those medical acronyms mean?), and guidance through the emotional turmoil of chronic illness...”

Finding physical, emotional, mental, and spiritual balance can be challenging for the person living with chronic pain. There is a primal need to provide physical comfort and positive interactions with others. Though this is something everyone faces, those who live with chronic pain are confronted with these challenges, and more, every day. Summer Devotions strives to help readers reclaim control over their lives by interacting with daily prompts for inward reflection. Everyone's experience with pain is unique and so should be their strategies for coping.

"Broken Body, Wounded Spirit takes those who suffer from chronic pain and illness on a magical ride to a place where all patients need to go: a place of relaxation, solace, and perspective. Woven in a rich pattern of interrelated tips, stories, and lovely truisms, we learn that we control our journey, and that being mindful of the realities of dealing with a chronic disease puts us in charge. I highly recommend this soulful little book."
 ~Richard Carson, Health advocate and Founder of
From Summer Devotions Inside the Cover
“A must have for anyone suffering from the frustration of chronic pain. Best part about this book is you don't have to read it in order... I've skimmed through several times and each time there is another inspiration just waiting!”  Amazon Reviewer

 “I am only about halfway through this book, but have found it thought-provoking, insightful and uplifting. I don't read a lot, and this is broken down into daily readings which is helpful, yet I often find myself wanting to read more than one days worth at a time. I would highly recommend this book and the fact that it is available on Kindle on my phone and I can take it with me and read it anywhere is an added bonus! “Hannah, AmazonReviewer 

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Celeste  is an advanced trained RN who was forced into early retirement because of chronic pain. Her experience as an educator, an advocate, and a person living with chronic pain gives her a unique perspective. Her motivation for writing self-help books is to fulfill her personal purpose of helping others. Celeste believes it is up to each individual to explore ways to improve their life and encourages her readers through the exercises included in her works. She also believes every person deserves to be treated with dignity and respect and understands first-hand that is something each person must learn to demand in a kind and meaningful way, despite judgment imposed by others. For that reasons she advocates and educates.

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Jeff  Miller, PhD is a clinical psychologist with several specialties, including management of chronic pain disorders.  His goal is to help patients learn to cope with the psychological and spiritual aspects of pain and provide easy to use tools for maintaining forward momentum in their life.

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Amazon (Also available in Kindle) 

In healing,
Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

Saturday, May 16, 2015

May Awareness: Sharing Our Spoons by Celeste Cooper

Moving into the Month Of Spoonies

Did you know?

  • Those who learn to live despite chronic illness or pain are called spoonies.
  • May is awareness month for:
    • Allergy
    • Arthritis
    • Chronic Fatigue Syndrome (ME/CFS, SEID)
    • Ehlers-Danlos Syndrome (EDS)
    • Fibromyalgia
    •  Lyme’s Disease
    •  Neuropathy
    • Osteoporosis
    • Systemic Lupus Erythematosus (SLE, Lupus)

ALLERGY– The role in immune dysfunction

Allergy may be coexistent with or aggravate many conditions. “Allergy symptoms are in response to an abnormal neurotransmitter, specifically, histamine.” (Cooper and Miller, 2010

Take the Health Central “Allergy Quiz”. 


Arthritis is an umbrella term for many disorders that affect our joints. The most common type is osteoarthritis. Research is advancing what we know of about osteoarthritis.

See Health Central article "Arthritis Awareness Month: More than 100 Types of Arthritis and Related Diseases" by Lisa Emrich, Follow me, Celeste Cooper, Chronic Pain Health Pro and other "Health Guides and Pros" who walk the talk. Ask questions, comment, share your story


Advances have been made in understanding the biology of ME/CFS.  Love it or hate it, and there are reasons for concern, the Institute of Medicine proposes a name change that addresses the most common component, systemic exertion intolerance disease (SEID). There is genuine concern that this name, while addressing a biological cause, may result in ignoring other biological changes that have been associated with ME/CFS. Many people educate and advocate for those of us with this dreadful disorder. You can find out who they are on my website here


Ehlers-Danlos Syndrome is a genetic disease with several types under its umbrella. Characterized by joint hypermobility, skin elasticity, and connective tissue fragility, this disease results from atypical (unusual) proteins are responsible for the fragility of collagen, which is the glue for our tissue. Some patients with EDS also have fibromyalgia or are susceptible for developing myofascial pain syndromeRead on


We are learning more about fibromyalgia. Several researchers believe they are close to finding biomarkers, but the stigma lives on because of those who hold tight to the in ill-conceived notion that fibromyalgia is a psychosomatic disorder. In light of more recent research, how and why remains a mystery to me. But, as I always say, there is opportunity in adversity.

It’s possible that finding the answer to FM will unlock our understanding of other chronic pain disorders associated with pain (pain that is amplified by our brain’s perception). I have written many blogs on fibromyalgia; check out the archived blogs to the right listed according to month.


“Lyme disease is caused by the spirochete bacterium, Borrelia burgdorferi. The infection is passed to humans by the bite of an infected tick carrying the microorganism. Symptoms include a “bull’s eye” rash at the site of the bite, malaise, fever, headache, muscle aches, and swollen lymph nodes. Untreated Lyme disease can result in symptoms occurring months or years after the initial exposure and causing damage to the heart, joints, and nerves of infected individuals. Symptoms can imitate other diseases and can be misdiagnosed.” (Cooper and Miller, 2010)   

It is very sad to say, but despite overwhelming evidencethat Chronic Lyme’s Disease  exists, there are those who doubt it.


Osteoporosis is diagnosed according to bone density tests. Poor bone density makes our bones fragile increasing fracture. A common complication of osteoporosis is hip fracture, and the mortality of hip fracture in the elderly is very high.  Watch a great overview of osteoporosis and prevention on Health Central. 


“Neuropathy is any functional disturbance or pathological change in the peripheral nervous system; also used to denote nonspecific lesions, in contrast to inflammatory lesions.” (Cooper and Miller, 2010)

Neuropathy can be due to an array of medical conditions. It can also be idiopathic, meaning that the cause of symptoms is unknown. Read about neuropathic pain


Systemic Lupus Erythematosus is poorly understood and under researched. The cause is unknown. Often referred to as Lupus (not to be confused with discoid lupus), SLE affects predominately women, African Americans, Hispanics and Asians and is generally diagnosed between puberty and mid age. It is an inflammatory autoimmune disease that causes destruction of the body’s various connective tissues. Read on.  

You can learn more about Lupus in an article by Leslie Rott at Health Central, “Lupus is as Lupus Does”. 


While we wait for such evidence, it is important to remember that regardless of our diagnosis, regardless of biomarkers, we are yet to find the cause or a cure for many immune or neuro-immune disorders. So, we must find ways to cope in a healthy way. You can find coping 
and management strategies on my website.

To all my fellow SPOONIES, thank you for sharing this journey. 

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"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate—Sharecare Fibromyalgia Health Expert

NEW Website:

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog

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

Tuesday, May 5, 2015

Healing What Hurts: The Politics of Pain: A Symposium Overview by Celeste Cooper

The Dinner

The energy in the room was palpable at the Center for Practical Bioethics dinner. Two outstanding women, Kathleen M Foley, MD (who would be speaking the next day) and Noreen M. Clark, PhD (posthumous) were recognized for their dedication and commitment to palliative care with the “Vision to Action Award." 

Keynote speaker Keith Wailoo, PhD gave us a look at the history of pain, its perception, and its treatment through the years with the overview of his book “Pain: A Political History.” 

People from the “Center” as they refer to themselves are the remarkable people I am privileged to know. The theme, Healing What Hurts, was resonate. Hundreds of eye’s moistened, and the audience was moved as fellow patient leaders from “Relieving Pain in Kansas City” shared their poignant stories in an interview video. It is because those at the Center give their time and talent that we, as patients, have a voice. So often, we only hear the negatives of pain, but being part of the Pain Action Alliance to Implement a National Strategy (PAINS),  an initiative of the Center, is energizing and empowering.  

Day two

Welcomed by Dr. Marc Hahn, the day got a terrific start with introductions and an overview on chronic pain by Myra Christopher. We were introduced to Joan Berkley’s family, who are kind and caring, no surprise. Joan Berkley was a board member of the Center of Practical Bioethics and dedicated her time and her memorial to ethical treatment of patients. Her legacy lives on in this eighth year of the Joan Berkley Bioethics symposiums.

Healing What Hurts: The Politics of Pain

Throughout the day, we heard about every aspect of pain and politics. I appreciated the opportunity to engage with the speakers, the topics, and other members in the audience. The day was full of information on the many things that affect the politics of pain and its impact on patient care. We explored the need for evidence-based policies on state and national levels, and we heard from a patient living with pain, Janice Lynch Schuster, who represents those of us who live with a stigma for no other reason than we experience chronic pain. 

Dr. Wailoo, author of Pain: A Political History, and Dying in the City of Blues: Sickle Cell Anemia and the Politics of Race and Health spoke of pain and politics, the shifts, the battlegrounds, the perceptions (some very similar to today), bigotry, ethics, culture and welfare. As he worked his way through his presentation, it became evident to me that the history of Americans’ perceptions of pain and its treatment is a pendulum swinging back and forth like a Grandfather Clock. 

The disparities of pain care are not new. Dr. Bonica, known in the 70's as the father of pain medicine because of his integrative approaches, kept a diary of 100 interviews of pain care providers. What he found was everyone had their own theories. As decades roll on, the pendulum shifts from social rights such as disability, relinquishment of those rights, restoration of those rights, medical to legal, hateful, and almost lunatic accounts of pain, and back again. Pain perceptions evolved from medical assessment to becoming a political resting post of right vs. left (ethical vs. bigoted, not necessarily in that order) to entering the realm of legalities. History should be a teaching lesson, but as someone said in the closing remarks, if you asked 100 pain physicians today how to treat pain, you would still get 100 different answers. We have work to do.

Many things were discussed including access to prescriptions. Challenges include, refusal to fill, long commutes to a pharmacy that can and will, lack of patient funds to pay out of pocket for medications or required drug screening because insurance will not reimburse, and more. According to Dr. Foley, there is no evidence that decreasing opioid prescriptions, lowering doses, or the implementation of drug monitoring programs have any effect on opioid overdose or misuse. So what are our political leaders doing to prove their case for continuing to implement costly programs that have no evidence they work? As Bob Twillman, PhD put it, why would we keep doing the same thing and expect different results? We hear repeatedly how costly pain is to America, but exactly who is driving these costs up, and to what end? 

Dr. Twillman says addiction rates have not changed and he asks, “Will decreasing the number of opioid prescriptions written correlate with a decreased number of patients in pain?” Anyone with common sense knows the answer to that question. So, I ask, "Why are our politicians and governing agencies making such an absurd plan?" We were reminded that we have an election coming up. Maybe we should all think about these things and share our stories with our political figures as suggested by Katie Horton, JD, RN, MPH. She says we should challenge our representatives on why they support programs that are not curbing drug abuse, deaths, or improving patient pain care. For more information on policies, legislation and regulations check out SPPAN, State Pain Policy Networks, and please read and act on my blog:  

We learned from Dr. Richard Payne that the science of epigenetics (studying genetic outcomes of nature/nurture and the effect on DNA expression) could be a potential biomarker for chronic pain. 

As suggested by Dr. Richard Payne and Melissa Robinson maybe we should encourage our congressional representatives to explore the ethnic, racial, social, and behavioral influences on the treatment of chronic pain. Maybe we should research how to treat pain with patient centered goals, not political agendas. We need our physicians to join us in the plight for patient centered care and fight for their right to do so. Both Dr. Payne and Myra Christopher helped draft the IOM report, “Relieving Pain in America.”and they urge us to comment on the National Pain Strategy report that has resulted from the efforts of many, including the PAINSproject. You can read more on this on my blog: 
Make a Public Comment on the National Pain Strategy by Celeste Cooper (The deadline is in days, don't wait.) (Addendum, Public comments closed May 20, 2015)

Our psychosocial and basic needs are not being met. When our priorities are shelter and food,  our pain care takes a back seat, but it shouldn't have to. We must address these issues as the human thing to do, as an ethical obligation to ensure everyone has access to pain care. 

Dr. Lynn Webster, past president of the American Academy of Pain Medicine and author of The Painful Truth, has produced an award-winning documentary (self-funded), with the same name that will air on public television this fall. The documentary covers the spectrum of pain care, and as he says, “The art is in the story.” He hopes the movie “Cake” (love it or hate it) will affect the dialogue on chronic pain the way the Philadelphia Story paved the way for AIDS awareness. As Dr. Webster says, tapping into our emotions is the driving force for change, not science. This is evidenced by the effect media coverage on “The Politics of Pain.” His documentary approaches the right side of pain, the Painful Truth. Watch for its announcement. I know I will.

Trailer for "The Painful Truth"


I have the extreme pleasure and opportunity to know people who are fighting for truth, justice, dignity, social conscious, and treatment for each of us living with chronic pain. I met with Dr. Bob Twillman, Dr. Lynn Webster, Kim Kimminnau, Ann Corley, Orvie Prewitt, my fellow patient leaders at the Relieving Pain in Kansas City, and so many others. I am perpetually energized by these positive people with a common goal to change the way pain is perceived, judged, and treated. 

What Can You Do?

Feel the empowerment of being a change agent by joining a cause that will make a difference for millions of Americans who suffer daily with pain. 
  • See what the Center for Practical Bioethics is doing, here.  
  • Join the PAINS Project, here

About the Speakers

Janice Lynch Schuster, et al. Representing people who live with chronic pain
In healing,
Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Sunday, May 3, 2015

Ensuring Patient Access and Effective Drug Enforcement Act of 2015 - S. 483 H.R. 471 A Template Letter by Celeste Cooper

Important legislation for the pain community is upon us. Please contact your senators by following this link.

Ensuring Patient Access and Effective Drug Enforcement Act of 2015
Senate Bill S. 483, HERE
House of Representatives Bill H.R. 471, HERE

An article on H.R. 471 in laymen s terms by PR Web, HERE

RE: Ensuring Patient Access and Effective Drug Enforcement Act of 2015

S. 483 and H.R. 471

Dear Senator __________

Please support the pain community, as your constituents support you, by voting for Senate Bill 483 (S. 483) and the House of Representative Bill 471 (H.R.471).

People living with chronic pain are being greatly affected by their inability to obtain the medications they need to help them function and lead productive lives. We need collaboration between patients, law enforcement, pharmacies, prescribers, advocates, and others to address the problems of addiction, while preserving treatment options and dignity for people who live with chronic pain and manage their care responsibly, the silent majority that do not make the headlines.

Drug monitoring programs have no evidence that they are working, so why are we spending extraordinary amounts of money on these programs? Insurance carriers are refusing to pay for accurate testing, and patients cannot bear the burden of this cost. It is unethical to deny treatment because they do not have the ability to pay. We cannot keep doing the same things expecting different results. Wouldn’t this money be better spent on programs for those who live with addiction? These people are also being underserved because current treatment programs are not based on patient outcome. They are based on ability to pay.

This is just a sampling of the things that can be addressed to improve both addiction and pain care, but it cannot be accomplished without a collaborative effort. Senate Bill 483 and H.R. 471 are steps in the right direction for serving all people in need.

I look forward to hearing how you plan to support the patient community. Please feel free to contact me by phone to discuss this important issue.


Saturday, May 2, 2015

May Awareness Event for Fibromyalgia and Other Invisible Illnesses-An Interview with a Disability Attorney by Celeste Cooper

Each year in May I make an effort to do at least one interview to raise awareness for fibromyalgia and other invisible illness. This year I am the interviewer. I picked this topic for two reasons:

  1. I frequently see patient comments regarding denial of application for disability benefits.
  2. Anthony Castelli, Esq., attorney in Cincinnati, Ohio, was willing to give the interview to help patients understand the process.

Anthony Castelli
Attorney at Law

If you or a family member or friend has significant symptoms or disease that interferes with their ability to work, this is an hour you don’t want to miss.

Attorney Anthony Castelli has more than thirty years experience with:

  • Social Security Disability
  • Personal Injury
  • Worker’s Compensation
  • Wrongful Death

We discuss:

  • The difference between SSI and SSDI
  • Long-Term Disability Insurance and SSA disability
  • When to apply
  • How to apply
  • Turned down, now what? The Appeal Process
  • The benefits of having a disability attorney
  • How the attorney is paid
  • Primary doctor vs. Expert Witness
  • Engaging the primary doctor to write a report
  • The most important thing to remember
  • Resources

You can find the interview by following this link:

*Disclaimer: The time delay on my end is due to my internet connection being from a phone hotspot. I apologize for any inconvenience.

You can find more information:

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"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate—Sharecare Fibromyalgia Health Expert

NEW Website:

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

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Celeste's Website

Celeste's Website
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