A Spring Lesson on Mindfulness: Dealing with Pain and Illness

It comes as no surprise that when we are sedentary, our mind shifts without provocation. And for those of us who live with persistent pain and illness, its source sticks out like a thumb that was just smashed with a huge hammer, red and swollen, throbbing, and begging for attention. But unlike a sore thumb, chronic pain and illness does not heal with time. Want to or not, we must acknowledge it. Through acknowledgement, we learn to accept it. And, when we learn not to scream, ridicule, or judge pain, fatigue or chronic illness, we do better. 

“But only a person in the depths 

of despair neglected to look beyond winter to the spring that inevitably followed, bringing back color and life and hope.”

~Mary Balogh

Biofeedback gives us hard evidence that our mind does have an effect on our body. This mindfulness boosts our defenses against the myriad of problems living with chronic pain and illness can bring to our door. So, what can we do to calm down the brain when it wants to take on a mind of its own? We can learn to be mindful. 

Our pain or other illness is not the villain here; it is the result of a bad character insulting our body. It doesn’t want to exist anymore than we want to experience it. So, being hard on it isn’t helpful, it won’t make it go away, and it won’t make us feel better.

In your journal, or in this book, write down what you think you MUST do. Now, go back and decide what it really is that you NEED to do. I suspect you will find the Must Do's that keep getting pushed to the bottom of your inbox resolve on their own. If you are having trouble giving up the driving force of stress inducing thoughts, pick up a good CD on mindfulness. There is a difference in living a packed life and living a full life.

Ten Lessons from Pain:

1. Acceptance of what is.
2. Compassion for the less fortunate.
3. Change is not a bad word.
4. Humility is a virtue.
5. Strength in not surrendering to stressors.
6. …

Can I make a list of my own ten lessons on pain?

[The above is an excerpt from: Broken Body Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS, Day Seventy-five]

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Remember, there will be times when no matter what we do to negate it, pain will demand its just course. During these periods, we should be particularly aware so our mind-body interaction can heal. Whatever means you use to become mindful, whether it be prayer, meditation, structured action, silent retreat, creative visualization, T'ai Chi, just do it! Procrastination is not our friend. 


You can find other topics, tips and exercises in our books (Jeff Miller, PhD, coauthor), and more. Take a few minutes to go through the table of contents for Spring Devotions.

 "We are all subject to the slings and arrows of outrageous fortune; they are around us, in a space we do not control. This book is a gentle, yet forceful reminder that the best defenses against them reside within- in a space we do control, welling up from resources we can learn to cultivate. Hope here is equally soft and irresistible, much like Spring itself."

 ~Dr. David L. Katz, MD, MPH, FACPM, FACP, Director,Yale University Prevention Research Center

Read what our other reviewers had to say about Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS.

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"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Connect with Celeste

Celeste’s Website: http://CelesteCooper.com

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. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

Celeste’s other books can also be found at Author Central. 


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

Urging Congress to Stop the War on Pain

Following is a letter I sent to my congressional representatives and to the President. It started out far more intense, but the character count needed to be 2,000 or less. Feel free to use it as a guide for your own letter. There are links to help you following this letter.





It’s time to end the war on pain and restore compassion. 

The sad fact is that responsible citizens are being demoralized because they take opioids to relieve their pain. They have to pee in a cup, guilty until proven innocent, and the tests accuracies are as diverse as the expense. And who pays for this demeaning accusatory test? The patient does. And, if they don’t succumb, they are sent away to suffer through withdrawal, without help. How is such torturous injustice allowed, even promoted, by our government?  

The number of baby boomers statistically accounts for upsurge in people with chronic pain, and for many of us, opioids are the safer choice. Overuse of anti-inflammatory drugs cause permanent damage to our digestive tract, kill our kidneys, give us heart attacks, and cause death. Alternatives, such as new antidepressants and anticonvulsants, not covered by Medicare, can cause cognitive problems and have many drug-to-drug interactions. Make no mistake, I understand addiction is real; I understand that suspect behavior should be investigated, but the majority of people who take opioids for pain are not at risk. 

Please urge congress to stop discriminating against us. Give patient care back to the physician and quit letting news headlines be a determining factor. Drug testing companies and pharmaceuticals have financial skin in the game using people living with pain as patsies, and most of us will not outlive the research. Untreated pain causes physical stress on the body, and it not only causes harm, it can be fatal. Our government should stop making physicians liable for their edicts. Physicians are damned if they prescribe opioids and damned if harm comes to their patient from not treating their pain. We are real people, with real pain, who deserve to be treated with dignity. We understand we need to be actively engaged in modalities that help us (also not covered by Medicare), and we have earned the right to not be treated like criminals. 

Helpful information and links for writing an advocacy letter.
Helpful links for finding your legislators. 
Links for advocacy involvement. 

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

“Is the spring coming?" he said. "What is it like?” …

"It is the sun shining on the rain and the rain falling on the sunshine…”

~Frances Hodgson Burnett

As one who lives with chronic pain, I know how important it is to have daily reminders, because as many of us do, I am easily distracted and can lose focus. That’s what inspired me to write this series of books with my co-author, Jeff Miller, PhD. Our readers and reviewers have told us Spring Devotions is inspiring, well written, and offers practical advice in an easy to read format. They appreciate that each day offers visually stimulating photographs thoughtfully connected to inspiring quotes that are carefully positioned to stimulate self-reflection from the thought provoking questions and exercises.  

Spring is just around the corner, so it’s time to prepare for the season of new growth, a time that allows us to plant roots and establish a core from which we can continue to cultivate wisdom and learn ways to treat our body with the care it needs and deserves. 

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

SPRING DEVOTIONS

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The paperback version allows space for documenting personal interactions when applying thoughts and practice and our paperback readers tell us how much they appreciate this. Our Kindle readers tell us they keep their journal close so they can write in it as they address each day. 

Please see what our reviewers have to say, here. And, be sure to check out the Table of Contents too. We want you to know about our books before you buy. While the series does provide opportunities for exploring our spiritual nature, and we feel our readers will find this is important to finding balance, none are Christian Devotionals. We received a poor review from a reader who thought the books were something different. We want to make sure you feel this is the right book/s for you. We want you to feel connected and engaged, inspired and successful in meeting your goals. And we would love for you to write a review for Amazon when you feel it's time to prepare for Summer Devotions, the next in the seasonal sequel. 

Now available in paperback and Kindle at Amazon UK and Amazon Canada. 

Also available at Barnes and Noble in paperback.

Are Fibromyalgia Researchers on a Common Path?

This is literally, at least, a million-dollar question, are fibromyalgia researchers on a common path or are they like "Two mice in a maze of indecision?” Here is my own non-award winning story.

Two mice in a maze of indecision. The first mouse, Must Mooli, is frantically navigating the maze because she knows if she finds the bell at the exit and thrashes it's pull back and forth cash will drop like confetti. Must Mooli is eager to receive the reward for the research she does. Shouldn't she be? After all, she needs the money to feed her family. Her moral duty is influenced by the basic needs of those she loves. But, she has competition, Bamboozled Barley, mouse number two. He is navigating the same maze using a different strategy because he wants to pick up studies along the way, studies he can replicate. You see, Bamboozled Barley is convinced that he can be an award-winning researcher heralded for his scientific breakthrough, discovering a biological test or even a cure for fibromyalgia. But, doesn’t he need to ring that bell too? Sure he does, but he believes he can accomplish more with his strategy. His bell may not be the same one Must Molli seeks, it could be in a different location or in another maze all together. So, he stumbles from side to side, following every path, seeking what he needs to bring him the recognition he desperately wants. Who do you think makes it in the end? Does it matter? Your about to find out.

Where Is the Bell?

From where does the money come? Will it miraculously fall from the sky? And, what research proposal, and by who, is it granted?  Must Mooli and Bamboozled Barley know that maze only too well. We don't know their process, but we can speculate on who provides funding. It either comes from some private entity for some type of secondary gain, directly or indirectly, or from a public funding source that our tax dollars support. We would hope that public funding has one goal, to find a cause, treatment, or cure for diseases that affect people. One such entity here in the U.S. is the National Institute of Health.  Yet, even public entities are fraught with controversy. Cort Johnson at Health Rising gives us a glimpse of what can happen. 

Just like Must Molli and Bamboozled Barley, we are all motivated by different things, and as our bells peal to a different melody, so do opportunities. 

The Facts about Replication

Bamboozled Barley knows the value of study replication and so does Kim Penix, blogger at Grace is Sufficient. It was after reading about her experience as a fibromyalgia study participant that I was inspired to write this blog. She had this to say about the process and the value of study replication.

“...The process is even more complicated because medical journal publications tend to only print the new and exciting finds. But unless those studies can be replicated repeatedly and consistently, you can’t be 100% positive. What happens then is when another study is performed, and they get different results, you may never read about it in a journal because it isn’t new and exciting. This leaves doctors without the continued information...”

So, how do studies get published in reputable journals? The study is written up and all the important criteria are examined by peers in that field of study. For instance, we would expect the study Kim participated in to be published in a respected rheumatology journal like Arthritis and Rheumatism or Arthritis Care and Research. 

What is Peer Review?

Peer review is a rigorous process in which scholarly articles, in this case studies, are evaluated by the scientist's peers. They look at content, validity, methods of research,  and so on. Usually it consists of more than one reviewer and includes editors of the journal who either accept or reject the article for publication. I wonder if there is peer bias (who you know), because some published studies are certainly suspect.  But, just like Must Mooli and Bamboozled Barley, motivation for publishing or rejecting a study is often influenced by what will improve circulation of the journal. We wish it weren't so for the reasons Kim describes, but it is the truth in our world as we know it today.

The Diagnostic Criteria and Participant Screening

One would think all scientists would use the same criteria for screening fibromyalgia participants, but that's not what happens. Scientists must reveal how they identified their participants, but the criteria is not consistent. And, sometimes co-occurring conditions are not ruled out, which can vastly change the outcome, or add so many variables to the study that the construct is damaged. 

This is of great concern to me because of the inconsistencies in the newer criteria. I have expressed by concerned to the NIH  and the American College of Rheumatology (ACR) as far back as 2010. The criteria must be prudently applied, but first we need criteria that the experts can agree to use. For instance, “The Preliminary Proposed (Wolfe, et al. 2010) and Modified Criteria (Wolfe, et al.2011) is NOT approved by the ACR (a response letter to me from the ACR), and rheumatologists around the world have been critical of it.

It's no secret that I favor Dr. Robert Bennett, et. al. criteria and you can read more about it on my website, Alternative Diagnostic Criteria for Fibromyalgia.  The ACR, the CDC, and the NIH understand the significance of fibromyalgia occurring with other painful disorders, as Dr. Bennett suggests. This is contrary to Dr. Wolfe, et al. (referenced previously). Are you starting to get the picture? Our researchers need criteria they can depend on for all the reasons I listed in my letters to the NIH and the ACR. And yet, six years later not much has changed.

Is It Possible to Collaborate?

I  wish the researchers could find a way to collaborate. I wrote a letter to a couple of them, Dear Dr Albrecht Dr Behm Dr Ge Hy and Dr Orlander –Are These Studies related, because I wanted to see if I was interpreting their research correctly and if they saw any similarities on they could use to collaborate. Unfortunately, I did not get a response. 

Because of technology, we can collect very important data, but some of our privacy laws prevent that. Sure, it's okay for Google to know our every desire; it's okay for foreign offshore health insurance billing companies to have every identifier we give our provider, which are NOT subject to HIPPA privacy laws. It's okay the very laws created to protect our health records are keeping scientists from valuable information. No it is not!

So, I must conclude, it's possible that my little story about Must Mooli and Bamboozled Barley could be more fact than fiction. Resources, physical location of scientists, and motivation are significant factors. But, I am hopeful. Make no mistake, there are people working to find a way to collect  data without breaking laws. For every obstacle there is opportunity.  Feel free to download the PAINS policy brief #7 from my website. 

In a separate blog, I will let you know about my search for replicated studies. And I hope to get the chance to share more with you about PCORI, which is ALL about collaboration and involving the patient. Never give up hope, the past is how we learn and the future is full of possibilities. 

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"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

Celeste’s Website: http://CelesteCooper.com

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. Subscribe to posts by using the 

A Winter Metaphor - Sculpturing Our Thoughts on Pain

Each season offers change and this winter reminds us of how different each season can be from year to year. We have seen some game changers, new records, and new challenges, because like pain, this winter is turning out to be anything but predictable. So as we think about the winter of our symptoms, maybe we can imagine the beauty of being able to sculpt our thoughts like the driving force of a winter storm creates a beautiful snow drift that inspires our imagination and leaves us in awe. 

The winter season is often compared to death. In this case, it is the dying off of old thoughts and destructive behaviors. Because of this, we must experience many feelings, good and bad, so we can be born into a new way of thinking about chronic pain and how it affects us all.… Confronting chronic pain takes constant reminders…motivation to stay focused on goals and achievements.… Come with us as we walk the barren winter land, appreciating the necessity to rid ourselves of previous perceptions and prepare for the spring season of rebirth.

 Excerpt from Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, WINTER DEVOTIONS 

  

Day 34 - Ice Wonderland

The goal is to sculpt our thoughts so they lift us up, so they gleam like a beautiful ice sculpture. Paul Gileno, Founder/President of one of the largest pain advocacy groups, the US Pain Foundation   said in his pre-publication review of Winter Devotions what many of our readers have shared.

"Anyone with chronic pain can and will be helped by reading and using this book as a tool. It is the perfect blend of inspiration and helpful information to guide people on their pain journey, in fact, as a person with pain; I have learned some important techniques that have helped me."

So, as I look back to the beginning of winter, I reflect on what it has offered thus far. I spent four weeks recovering from pneumonia. I have had many interventional procedures for my pain and tests for those yet to come. But, I also celebrated with my dad as he reached a personal landmark in his life, ninety wonderful years. 

Talk about an inspiration. After bouncing over rough terrain as a heavy equipment operator nearly his entire adult life, his spine shows the wear and tear and it causes him pain. But that’s not all, he also has severe neuropathy, which has affected his ability to drive safely. As one who retained his driving skills to this day, this was troublesome. But, he did not wallow in self-pity; instead, he set about accepting the danger that could be involved, and began to think about how he could move forward. He got hand controls installed on his truck and passed the special drivers test with flying colors. The point is that in his 9th decade of life, he still knows how to adapt, to embrace change, and to make the best of a given situation. We talked after his big bash (over 100 people there). I asked, so dad, “what’s next on your agenda?” he said, “Well, I guess I will shoot for 100!” He is a champion; he has had more struggles than I would ever want for him, but despite any adversity, he sees opportunity. If his purpose is to inspire me, he has certainly done that.

So I leave you with this…I hope you will pick up a copy of Winter Devotions. You can use it as your guide every winter, because like the unpredictability of each season, our thoughts and ideas change too. We need reminders on how to go about creating a new sculpture, one different than the season or year before.  

One of the dearest people I have the pleasure of knowing, Myra Christopher said, “I love the very idea of 'Winter Devotions'. The struggle of living with chronic pain is compounded for many by the winter months when it is cold, damp, and often gloomy. Bones ache, joints hurts, and the spirit sometimes become depressed. This wonderful book provides a tool to help with those issues. The quotes, photography, and motivation of authors Celeste Cooper and Jeff Miller all bring much needed hope and relief.”

Myra J. Christopher, Kathleen M. Foley Chair in Pain and Palliative Care at the Center for Practical Bioethics, and Principal Investigator of the Pain Action Alliance to Implement a NationalStrategy.

An Amazon reviewer of the Spring Devotions book in the series shared her disappointment thinking the book was a Christian devotional. So, I want you to understand that each season (book) has daily “DEVOTIONS”, that offer inspiration, interaction, and information on how to care for ourselves. When we heal any aspect of our being by embracing the power of physical, mental, emotional, and spiritual balance, we reduce our suffering. Using our own experiences, we can inspire others who share our journey, and that is empowering. But, these books are not religious devotionals.

I encourage you to visit my website so you know what WinterDevotions is about by following the highlighted text. And if you are one of our readers, please leave a comment on Amazon. 

Amazon

US Paperback http://amazon.com/dp/0615924050

US Kindle http://amazon.com/dp/B00HAVXLYO/

UK Paperback http://www.amazon.uk/gp/product/0615924050/  

UK Kindle http://amazon.co.uk/dp/0615924050

CA Paperback http://www.amazon.ca/gp/product/0615924050/  

CA Kindle  http://amazon.ca//dp/0615924050

Barnes and Noble paperback http://barnesandnoble.com/w/1118942182?ean=9780615924052

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

Celeste’s Website: http://CelesteCooper.com

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. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

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

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Breaking the Shackles of Chronic Pain through Photographs

In my blog, The Setting, the Shutter, and the Power of Resolution, I talked about my 2015 New Year’s resolution - "Learning to use the manual settings on my new digital SLR camera". I think of that blog as a metaphor for transforming adversity into opportunity, a concept I use to cope as a person living with chronic pain and illness.

Photographs Speak All Languages

A universal language is revealed through photography. That’s why, as most of our readers know, my co-author and I use our photographs to convey feelings associated with the daily quotes and affirmations we share to inspire you to interact with through the exercises and questions we ask in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain series. http://amazon.com/author/celestecooper

For this piece, I want to share a photo from my personal collection that is shared in our Winter Devotions book. http://www.amazon.com/Broken-Body-Wounded-Spirit-Balancing/dp/0615924050/
Day Twenty

This photograph is from “Day Twenty”, a day that explores how we deal with brainfog, which often accompanies chronic pain and illness.

We transform the pictures in our mind when we give them a name that expresses how we feel. Today, I think I shall name it…

Beauty in Obscurity: Enhancing Our Vision

As the poet Hannah Moore said, “Obstacles are those frightful things you see when you take your eyes off the goal.”   So, I propose this to you...

What do you see in the photograph? How would you title it today, in this moment?

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

WINTER DEVOTIONS is available in paperback at Amazon and Barnes and Noble, and  Kindle. 

Kindle reader apps:

Kindle app for PC

Kindle app for android

Kindle app for tablets

Kindle app for Mac

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

Celeste’s Website: http://CelesteCooper.com

The CDC Opioid Guidelines: Exercise Your Right to Be Heard

Many of you may know I am recovering  from pneumonia, so in an effort to care for myself, I have not been blogging, but this is perhaps the most important advocacy topic of this month. Holding the CDC accountable for questionable behavior and making our voice heard!

Why We Should Hold the CDC Accountable

We deserve to be heard, but the CDC tried to slide their guidelines under the radar, calling them "guidelines" knowing they would be embraced as a policy without having to undergo the rigorous process of establishing a policy. As taxpayers, we have a right to transparency, which they did not provide. Please take a moment to read my dear friend, Myra Christopher’s blog on why this is important to those of us living with chronic pain.

PROPOSED CDC GUIDELINES FOROPIOID PRESCRIBING COULD UNINTENDEDLY MAKE THE BURDEN OF CHRONIC PAIN GREATERFOR MILLIONS OF AMERICANS by Myra Christopher 

Holding the CDC accountable and providing this opportunity to comment is in large part due to Myra and the PainAction Alliance to Implement a National Strategy. 

You can read my comment, which was kindly shared by the National Pain Report. My Story: Has the CDCConfused Addiction and Tolerance?

How to Comment

Commenting on the CDC Opioid Guidelines as part of the docket is a valuable opportunity to protect our rights as people living with chronic pain. So please, I am begging you, and I seldom do that, leave your comment, get your docket number, your comment only counts when you do this. Use  the link, just click on the comment button IN THE UPPER RIGHT HAND CORNER. You can remain anonymous. 

As of this writing, January 5, 2016, of the 100 million people who live with chronic pain in America, only 1,793 have commented.

COMMENT NOW! 

http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0001

Open Comments

Another opportunity has arisen, an open conference. My friend Myra Christopher has to say. "It is important for CDC to get this right, and they need our help to do so.” 

The following provided by the National Pain Report. 

Centers for Disease Control and Prevention (CDC) is hosting a public conference call on its controversial Guidelines for Prescribing Opioids for Chronic Pain Thursday, January 7, 2016, at 9:00 am ET. The public can participate via a conference call.  The dial-in number is: 1-888-395-7561, and the Participant Code is: 3954121.

I may be weak, but I am not done! We the People-ALL the People

Since our Congress questions the CDC’s authority to infringe on our Constitutional rights as stakeholders in this issue, and as citizens of these United States, shouldn’t we too! Read the National Pain Report article, Congress Questions CDC: Who Drafted Controversial Opioid Guidelines?

No one understands the effort it takes better than I do, and what I also know is that under no circumstances is procrastination our friend. Please do it today.

The deadline is January 13th.

COMMENT NOW! 

http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0001

We are not alone. Read the comments within the article Pain Advocates Urge Patients to Comment on CDC Opioid Regulations 

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

Celeste’s Website: http://CelesteCooper.com

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.