Sunday, October 15, 2017

Your Life/My Life with Chronic Pain #MakeItVisible


Throughout the month of October the U.S. Pain Foundation is teaming up with Healthline to bring awareness to invisible illness. The request: share a photo or video on Instagram with the #MakeItVisible hashtag and make your chronic condition visible. For every submission, Heathline will donate $5 to U.S. Pain Foundation.



The following are excerpts from an interview I did for Melissa Swanson and the National Fibromyalgia and Chronic Pain Association.

My life before fibro was not without pain. I had my first cystoscopy at age five, and I have had migraines and irritable bowel syndrome (IBS) since puberty.

During my school years, I ran track, bowled on a team, and played intramural volleyball. As a young adult, I was a competitive racquetball player and instructor, and a competitive downhill skier. [All my life] I enjoyed physically active sports. Having joint hypermobility, I experienced some significant soft tissue injuries, [but] I thought I was invincible, and I wanted to fit in. It never occurred to me that what I experienced—muscle symptoms and recovery time, feeling sick to my stomach after activity—was anything different from my peers.

I worked all my life with chronic pain, but it wasn’t until my brain turned to mush that my life really changed. I knew I would not be able to continue my nursing career or continue my work as a Legal Nurse Consultant… By age 50, I had to face a harsh reality. {As] I walked out those hospital doors for the last time as a healthcare provider, I had no idea what was ahead of me. I only knew what I was leaving behind. I was terrified. 

Melissa is founder of Fibro Warriors Living Life and author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child. You can read the entire interview here.

What I have learned from interviewing others is that my story is not unique. We all struggle with the stigma associated with invisible illness, especially chronic pain. Discrimination against certain groups of people, women being one, is increasing, not diminishing. I write about this in my Health Central article, Women, Bias, Discrimination, and Chronic Pain. And labels affect everyon as I share in my ProHealth article, Pain and Prejudice: Surviving Fibromyalgianess. Discrimination against those of us living with chronic pain doesn’t stop there either. Many patients are not only forced to live with the stigma of chronic pain, they are also suffering physically as the opioid crisis grows. Last resort medications are being withdrawn. Some patients are forced into withdrawal, and the suicide rate is growing because of untreated pain. Pain warriors are now living in exile. It’s time for the tide to turn, but it won’t happen unless we…

#MakeItVisible

Healthline is encouraging us to share our story. Help the world understand that we might be battling chronic pain and/or illness even though we don't always look sick.

In healing,,Celeste

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

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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 blogs and comments are based on the author's opinions and are not meant to replace medical advice.  





Sunday, October 8, 2017

Lymphatic Massage, Clogged Drains and Fibromyalgia Pain


In 2015 investigators Yuan SL, Matsutani LA, and Marques AP noted lymphatic massage as the most helpful type of massage for fibromyalgia. So what is lymphatic massage and why is it important to our health?

The lymph system

To understand why manual lymphatic massage is beneficial for those of us with fibromyalgia, we must first understand how it works.

Courtesy PrintableDiagrams.com via Google
The purpose of our lymph system is to maintain fluid balance in our body’s tissue. Lymph vessels carry lymph fluid around our body and through our lymph nodes where cellular trash is filtered and collected. Special blood cells, called macrophages, then digest the cellular debris before recycled lymph fluid is returned to circulation as plasma, the liquid part of blood.

Unlike our blood circulation, our lymph system is passive. This means circulation of lymph fluid depends solely on contraction of surrounding muscles during exercise, body movement, deep breathing, and properly functioning organs. When movement is disrupted, excessive lymph accumulates leading to swelling, called edema, and a buildup of toxins in our tissue. 

As a nurse and a patient, I know the important role of the lymph system. I have idiopathic edema—a fancy way of saying “yes, you are swelling, but we don’t know why”. In 1994, Deodhar AA, Fisher RA, Blacker CV, and Woolf AD concluded that rheumatologists should be aware of fluid retention syndrome and fibromyalgia. I couldn’t find any recent data on this. But, I suspect this type of swelling in fibromyalgia could be due to immune system dysfunction as identified by the FM/a® blood test. Because of this long-standing issue, I had to get creative when recovering from skin cancer surgery on my leg. I knew I needed to optimize my already damaged immune system so I could heal.

For any number of reasons, our lymph system sometimes needs help to reduce swelling. That’s where lymphatic massage comes in.

What is lymphatic massage?

Lymphatic massage, also known as Vodder Lymphatic Massage, was pioneered by Dr. Vodder it in the 1930’s for treating chronic sinusitis and other immune disorders. The therapist manipulates the body externally through massage, which opens lymphatic ducts and helps reduce stagnation and generalized swelling. Lymphatic massage encourages the flow of lymph fluid through muscles and tissues and into the lymph system for circulation. 

Manual Lymph Drainage (Vodder Technique) massage requires special training. You can find a therapist at Dr. Vodder School of International.

*There are some health conditions where massage should be avoided.

Additional reading:
Exercise and the Forgotten Lymph (from my website)

In healing,,Celeste

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

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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 blogs and comments are based on the author's opinions and are not meant to replace medical advice.  



Thursday, October 5, 2017

A Fall Lesson on Mindfulness: Brain, Body, and Busters


Our mind shifts without provocation, taunted by thoughts of something real or imagined. Neuroscience can't tell why this is per se, but it does show us our thoughts can affect the way our body feels. This is especially important for those of us who experience chronic pain. There's little doubt between us that we experience "chronic background noise" which surfaces to our conscious mind when it finally screams out for attention. As an example, I often experience a sudden tightening of muscles in my buttocks, hard as a rock. But when I examine the experience in my conscious mind, now called to attention, I realize it's been tight for a while, it's been running in the background. It takes intentional relaxation methods to calm things down. But, that’s the wonderful thing about our mind, we can bust through harmful thoughts with intentional mindfulness.

The Still Rippling of Sunset©
Biofeedback gives us physical evidence that our mind does have an effect on our body, and we know mindfulness boosts our defenses against the myriad of problems living with chronic pain and illness can create. 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. 

“Mindful awareness expands my being
and encourages me to live consciously, without judgment.”
~Celeste Cooper, Broken Body, Wounded Spirit, Fall Edition

Our pain is not the villain here; it is the result of a bad character invading 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.

If we cultivate mindfulness in our life, we see everything has value… Dr. Jon Kabat-Zinn, Professor of Medicine Emeritus and creator of the Stress Reduction Clinic at the UMMC Center is the author of Full Catastrophic Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness, and numerous other books to ease suffering by reducing stress and pain through meditation. He tells us we may not always like the sensations we are experiencing from pain, but by acknowledging our pain without judgment, we bring ourselves to a higher level of self-awareness…

Think of a bright fall day, briskness on the edge of arriving, leaves a colorful artist’s pallet, and migrant birds are flying overhead in the backdrop of a crisp blue sky. These are examples of being mindful. All we have to do is be present and aware in the moment admonishing our role as critic.


Excerpt, Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Fall Devotions, Day10, Being Mindful of Our Thoughts and Body


Available on Amazon and all major outlets.




We can learn to be mindful of our pain without judging it. After all, it is our body crying out for attention, love, and caring, not ridicule and disturbing dialogue. Learning to be mindful can redirect our thoughts to create an environment that is appreciated fully.


Other articles you might find helpful:


In healing,,Celeste

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

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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 blogs and comments are based on the author's opinions and are not meant to replace medical advice.  



Sunday, September 10, 2017

Surviving Pain in Fall


My respite is over and I am happy to say, I feel renewed once again. The beauty of summer in the Rockies is unforgettable.

As we came down out of the mountains, I became acutely aware that the summer heat and humidity are still present, but I also know fall will arrive soon and the lazy days of summer will surrender to crisp chilly air. For some who live with chronic pain, that will be welcome, while others will see their pain increase as a nature of their illness. Regardless, it's time to prepare. With short-term memory loss, I need written prompts, a string tied to my little finger or a note pinned to my jacket isn’t enough. That's how the Broken Body, Wounded Spirit Balancing the See-Saw of Chronic Pain series came to be.

If you aren’t familiar with the series, you can learn more at my author profile.  There is also detailed information on my website at the following links if you want more information before you decide if this is a book for you. If you have the book, it's time to get it out and re-explore. I suspect you will see things from a different perspective, and you will learn something new to share.


Fall is the season for reaping the rewards of summer and preparing for the winter. It is a time to reflect and look forward. I hope you enjoy Fall Devotions. We have been told it offers encouragement, practical advice, comfort, and aesthetic appeal.

Here’s to a colorful and hearty fall season.





Available:

Amazon in paperback 
Amazon UK Kindle 
Amazon Canada Kindle 
Barnes and Nobel paperback 






Friday, September 1, 2017

Prejudice against Women Living with Chronic Pain


September is chronic pain awareness month and a perfect time to recognize that when it comes to chronic pain, women are treated differently than men.

by Jen Jasper
from  Broken Body, Wounded Spirit:
Balancing the See-Saw of Chronic Pain

Winter Devotions

Discrimination

There is a centuries old bias against women. Societal beliefs and recriminations have blamed women for their pain, calling us “hysterical.” Today—not much has changed. Our pain remains misunderstood, mistreated, undertreated, and sometimes untreated all together — simply because we are women. The gender gap between men and women is more like a chasm. 

If you are interested learning more about what I have to say, please read Women, Pain, Bias, and Discrimination.


Women’s Experience with Chronic Pain


A review of over 450 epidemiologic studies clearly demonstrates women are at a significantly greater risk for developing chronic pain. As females we have a cornucopia of possible chronic pain generators, some dominate in women and others are specific to our gender. Disorders and diseases that cause pain range from pelvic pain, irritable bowel syndrome, arthritis, to menstruation, female related surgeries, child bearing, etc. Hormonal differences and genetics also influence our pain. We tend to be more sensitive to pain—not the same as tolerance—and the character of our pain can be different because of the source, such as childbirth. And, the words we use to describe our pain also play a role in the way our pain is judged.

There’s no doubt our pain experience and the way we relate to it is different from our male counterparts.

 “Our health care provider’s words matter too. We should feel safe when communicating our concerns and symptoms and never judged for having a medical condition that has no cure. Our provider should be part of our team, part of our plan, not part of the problem. When we feel heard, we do better.”  


Trust

In my blog, The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MD (pain specialist, author, and producer), I wrote about something Dr. Webster said at a PAINS symposium. It resonated with me and I will likely never forget it. He said he always asked his patients, “What do you want [from pain care]? The answer was always the same, “Doc, I just want my life back.” He heard this same response repeatedly. Dr. Webster witnessed a primal release of emotions from his patients when he replied…

“I believe you.”

Trust is important to every chronic pain patient, particularly those groups who have been identified as being treated with bias. It's not just women who suffer the consequences of disbelief, judgment, and discrimination. We all need to be heard and for our care provides to believe what we say. If our provider is disinterested, they are not to be trusted. Trust, like communication takes two.

Conclusion

I think our understanding of pain experiences between men and women has a long way to go, as does our understanding of chronic pain in general. However, when we look at the influence gender has on chronic pain, we can say — women experience and report pain differently. 

Women are more likely to be wrongly diagnosed, and possibly told to take an antidepressant for their unspoken “hysteria”. Some of us are told to go home and rest until it passes, or we feel unheard and dismissed like a student sent to detention for misbehaving.

Despite the IOM report, Relieving Pain in America telling us there is bias and discrimination against women, and the National Pain Strategy telling us stigma and vulnerability exists, particularly in women exhibiting pain from conditions like chronic fatigue syndrome and fibromyalgia — we wait for change.

If you have suffered as a result, you might find the Guidelines for Pain Warriors on my website helpful.


Additional Reading: Two interviews this past year with two brave women:


In healing,,Celeste

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

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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 blogs and comments are based on the author's opinions and are not meant to replace medical advice.  



Saturday, July 29, 2017

Musings of Pain from Celeste – Part Two


What a privilege to have wonderful people like you to support my writing. Without knowing it, you lift me up. For that, I am grateful. It isn’t always easy; I get it. When I write for others, I learn too. Supporting one another is necessary to keep all of us motivated to do the things necessary for living a balanced life, despite persistent, chronic pain and illness. I hope you find something you need in my musings.


In healing,,Celeste

https://www.amazon.com/dp/0615798268

A Sampling of Musings


“To know yourself as the Being underneath the thinker, 
the stillness underneath the mental noise, 
the love and joy underneath the pain, 
is freedom, salvation, enlightenment.”
~Eckhart Tolle

Additional Reading:

And more …


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

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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 blogs and comments are based on the author's opinions and are not meant to replace medical advice.  

Wednesday, July 5, 2017

Collateral Damage in the Opioid Epidemic


I wish I were writing this blog to report good news. Unfortunately, things are no different today than they were in 2011 when the Institute of Medicine (IOM) report “Relieving Pain in America” was written. Instead, and even though the IOM report spirited the drafting and publishing of the National Pain Strategy, things have gotten much worse. Hardly a week goes by that I don’t read about a fellow patient taking their life because the source of the physical pain was inadequately treated and their emotional pain unbearable because of feeling judged, many times by those they seek for help and support.

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The opioid epidemic is very real and I do not mean to minimize that fact in any way. However, it is now painfully obvious that the CDC guidelines for opioid prescribing have not helped those who live with addiction. In fact, the guidelines have led to more deaths, not fewer. The forgotten, stigmatized, and judged, people living with persistent pain are now joining the death toll. That’s why I am sharing an article I wrote a year ago for my website, Guidelines for Pain Warriors. If you have been injured, I encourage you to use the links you find in the following letter. Or if you know someone like a recent victim, please encourage his or her family to take action.

Because of the volume of requests for help and the need to meet the demands for my own care, I share the following from my website.

Dear concerned fellow person living with chronic pain,

It is rewarding to write books, articles and blogs to help others manage chronic pain and illness. But coping strategies alone are often not enough. Opioids allow many patients the ability to participate in things they otherwise couldn’t. I advocate for moving complimentary therapies into mainstream but these days, the bulk of my time is donated to the crisis created by limited patient access, if any, to their opioids.

Because of the volume of requests for help and the need to meet the demands for my own care, I investigated information to help you with your personal situation.

It’s important to understand what is happening. Physicians are caught in the middle. The DEA crackdown on prescribing opioids has made them fearful of because of perceived threats to their livelihood. On the other hand, if patient harm results from negligence or abandonment, the provider can be  liable for that too. When a patient is fired, the physician has an ethical obligation to ensure a patient’s care is uninterrupted. However, the DEA, the CDC, the Center for Medicare and Medicaid, and or other government agencies have no liability for the results of their actions. 
We have the ability to hold the right people accountable by providing factual evidence. Evidence includes things, such as:
  • A written letter from your physician stating his/her reasons for stopping your pain care. (If you don’t have one, demand it.)
  • Chronological documentation your physician failed to provide ample notice for finding another provider. 
  • Following are other things to consider:

  1.  Is your physician negligent if no one is willing to continue your care?
  2.  Is your provider fearful to bridge the gap because of the CDC Opioid Prescribing Guidelines or other governing bodies?
  3. Is your provider using the changes as an excuse to abandon care?" Pain that does not abate is a reason to seek medical care, but physicians often feel helpless because treating chronic pain is complex. 
  4.  When the standard of patient care is breached (i.e. abandonment, negligence, or malpractice) and that breach causes harm, there is legal recourse. Currently, three things affect the changing standards, as I see it, (1) the influence of government agencies (2) lobbying by PROP--follow the Phoenix House money trail, and (3) the American Medical Association's decision to cut pain as the 5th vital sign from routine assessment, affecting the standard of pain care negatively.  
  5. Why isn't acupuncture, counseling by a provider trained in pain care, therapeutic manual therapies, or other proven modalities also considered when making changes in the standard of care? Answer: insurance lobbying, another player identified in the pain care market. 
  6. Patient outcome is seldom discussed even though it should be the driving factor of all patient care standards. 

*If you are forced to sign a contract, read it. A contract is between TWO people and may be litigated if either party fails to uphold their part of the contract. The physician’s responsibilities toward your care should also be provided. 

 The laws to protect both the physician and patient are very gray in today’s stormy climate.

  • The physician must  provide evidence as to why they withdraw  care. (See Pain vs. Addiction Behaviors.) Yet, some may feel protected by the CDC guidelines. They are not. The guidelines are not LAW!
  • Failure to provide information such as copies of relevant medical records, treatment notes, tests, etc. to those who are continuing your care is a breech. This does not meet patient care standards.
  • Voice recordings or notes in your medical record that the DEA or other government agency created a burden on the physician’s ability to treat pain are helpful for both the physician and patient, but  difficult to obtain unless a case is being litigated.
  • Documentation of refused emergency care, such as treatment, hospital admission for withdrawal symptoms, suicidal ideation, or any other untoward effect is mandatory. (This is not the same as expecting an ER to continue your outpatient pain care.) 
  • Your loved one has committed suicide and there is documentation abandonment or untreated/undertreated pain was the cause. (many statistics are likely skewed because of the inability to collect life insurance and the stigma associated with suicide and chronic pain). 

*As a patient, you also have a duty. If you are unreasonably demanding, non-compliant (i.e. abusing, diverting, or misusing opioids), or threatening to the physician or staff, you are not protected.

If you have been abandoned and have evidence of harm resulting from changes in your pain care, you have recourse thanks to required reporting in Senate Bill S.483, Ensuring Patient Access and Effective Drug Enforcement Act of 2016, signed into law April 2016. 


Harm constitutes:

  • pain and suffering
  • cost of additional treatment
  • loss of earning capacity, and
  • loss of the ability to enjoy life

If you have sufficient evidence, please submit it to the attorney general for your state, which you can find at  NAAG | Who's My AG?   If anyone is providing evidence on someone else’s behalf make that disclosure and provide contact information.

Remember, if it wasn't documented, in didn't happen. Gather your arsenal and become empowered. Record what you can, when you can. The attorney general needs concrete evidence to move forward. Make sure they know you know they are required to report your case as part of S.483. There are links to additional contacts at the bottom of the Sample Advocacy Letter. I suggest sending a copy of your letter to your attorney to those you feel are appropriate. Be sure to mention the pain care laws for your state (link is courtesy of the Academy of Integrative Pain Management, SPPAN) or by typing “your state’s name state law on pain care” in your browser search engine and select from the results.

Because every case is different, each of us must demand our rights to be treated with dignity and respect. There is opportunity in adversity. Rome wasn’t built in a day, nor will our cries for help be solved quickly, but we must have hope. Despite what many think, those in chronic pain are tough. We overcome hurdles on a regular basis.

I recommend joining an advocacy group to help you stay abreast of recent newsworthy information and/or fight for our rights in Washington.

US Pain Foundation
The National Fibromyalgia and Chronic Pain Association

See The PAINS Project for links to their steering committee members for additional information. 

Helpful links for finding your senator, representative, and governor; medical organizations, and government health related websites, your states attorney general, your state’s pain care laws and more can be found at the bottom of page, Sample Advocacy Letter.



In healing,,Celeste

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

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

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

Learn more about Celeste’s books at her website or find links 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 blogs and comments are based on the author's opinions and are not meant to replace medical advice.

Celeste's Website

Celeste's Website
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