Saturday, March 25, 2017

Leg Circulation, Skin Cancer and My Second Pump: Another Three?


The first week in January, I had a squamous cell skin cancer removed from the inside of my foreleg. You could nearly drop a marble in the hole when the cancerous tissue was removed. A vertical incision was done so the edges would come together for healing. Unfortunately, it did not stay that way. I developed blisters, sloughing, excoriation, and eventually an open and deep wound.

Healing Stages

Healing with chronic illness

The surgeon asked me if I had other medical problems besides having thin skin, a history of cellulitis, Raynaud's, and idiopathic edema. Other than having Hashimoto’s, fibromyalgia and ME/CFS I didn’t have an explanation, I didn’t have an explanation. I don’t know if I will ever know why my body reacts this way. I do not take a medication that would cause skin thinning, poor healing or easy bruising. I wonder if the immune factors elevated in my FM/a test might play a role. But, whatever it might be, I needed to manage this wound successfully. As a nurse, I knew it was going to take time and careful attention.

Stagnation and movement

I was sedentary with my legs elevated for two months, and it was grueling. I knew the importance of keeping blood and lymph moving and this is a perfect example of why I write about it. Lack of movement was not only detrimental to my leg healing, it also caused my fibro, arthritis, and myofascial pain to flare. I had to find a way to get the blood and lymph moving for my general health and for this leg!

The second heart pump: a win-win motivation spin

In my search I found many ways to keep circulation chugging along like the little engine that could. Most I already knew but none was as motivating as thinking of my legs as a second heart pump. It made it easy to include mindfulness and visualization with movement and help with mind/ body balance.

*These movement strategies are also helpful for restless leg cramping and more.

Dr. Sam Robbins’ You Tube video gives relatable information on how our legs, as a second heart pump, are important to our health. He gives us three valuable exercises that no doubt help with healing. Once I was able to start my daily walk again, my leg wound began to heal at a faster rate.

A plan

So, how did I go about moving while tethered to a chair?

·        Exercise on the hour.
·        Three repetitions. The number three is my start-low and go-slow strategy. Repetition is not my friend because of myofascial trigger points. So when I progress any routine, I increase the frequency, not the repetitions. Maybe that doesn’t work for you, but whatever you prefer, the goal is to stay movement motivated.
·        When up to the bathroom, I swung my leg back and forth and kicked the air while holding onto something. The “pumping” motion helped return blood and lymph back into circulation. Dr. Robbins inspired me with his information on “rebounding”, which works something like bouncing does for astronauts.
·        In the chair, I did leg lifts, bicycle peddling, flexing and extension of my ankle, etc. These are essential elements for those of us with leg circulation problems. 

This has been a great learning experience for me. Sure, I wouldn’t ask to have this happen again, but it did happen. I practice T’ai Chi, but the conscious awareness I now have for my second heart pump has added a new meditative movement that will help all of my leg problems and I hope sharing my story will do the same for you.

“When confronted with challenge,
I discover my inner strength.”

Celeste Cooper,


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

Saturday, March 18, 2017

Steep Drop-offs: Nagging Pain and Our Sixth Sense by Celeste Cooper


Nagging pain and our sixth sense, are you in touch with your body? Do you listen when your body talks?



  • Listen to what our body has to say.
  • Identify new activities, medication, food, or disrupted sleep pattern that could be contributing to our pain.
  • Surrender to our sixth sense.
  • Know the “yeast beast”.
  • SAM-e?
  • Sort the mail of our mind.
  • Identify and pay attention to perpetuating factors.
  • Keep our candles burning?
  • Know our body and mind stress signs.
  • Surrender is not an option.
  • Hellerwork?
  • Kindness is an antidepressant.
  • Medication safety and reporting.
  • Plan-Implement-reevaluate.
  • Watch out for steep drop-offs.
  • … and much more.


"This, the last of Celeste and Jeff's four seasonal devotions books, may just be the best of all. From its practical suggestions to its inspirational quotes and photos, Spring Devotions offers chronic pain sufferers daily bite-sized, easily digestible tidbits that educate, encourage and empower us to take control of our health and our lives. And as someone who likes to jot down personal thoughts in my devotionals, I especially appreciate the extra space for notes. All in all, Broken Body, Wounded Spirit…: Spring Devotions is a valuable asset for anyone living with chronic pain."
~Karen Lee Richards, Editor-in-Chief, Pro Health

Balancing Chronic Pain in Spring

I thank our readers. It is through your encouragement that I am sustained and lifted up daily. Every time I read a particular quote, a comment from you, a research article or advocacy piece, I think of you!

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


Monday, March 13, 2017

Ten Lessons from Pain by Celeste Cooper

Ten Lessons From Pain



“There is a difference in living a packed life and living a full life.”
~Celeste Cooper






There is always a lesson in adversity and living with chronic pain and/or chronic illness is no exception. When I sit quietly like the little wren, life’s messages whisper in the wind and fall upon my ear. In these moments I find purpose in the choices I make.  

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)  Commitment to self and others.
(7)  Flexibility to roll with the flow.
(8) Appreciation for things we would otherwise take for granted.
(9)  Empathy, we are on a level playing field.
(10) Patience, our inbox is not supposed to be empty.

[Excerpt, Day Seventy-five]

Each day in the Broken Body, Wounded Spirit series is followed by a thought provoking question and the Spring Edition is no exception. So, what ten lessons have you learned from living with chronic pain and illness?

Spring Edition



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

Monday, March 6, 2017

The Painful Truth Documentary Is Here!


As stated in my blog in September of 2015 The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MD, Dr. Webster’s message is irresistible. His dedication to writing the book and producing this documentary (with Craig Worth) is a testament to the spirit and determination he has for people living with pain. He advocates for awareness of the seriousness of untreated or undertreated pain, suicide and addiction. (You can view more information at The Painful Truth Documentary  website.)



Over the weekend, I got an email from Dr. Webster and I am so excited to share it with you.

Dear friends,

I'd like to share some exciting news: "The Painful Truth," the documentary I co-produced with Craig Wirth, was distributed by NETA on March 1 [2017] to all public television stations in the United States. On March 3, it aired on KENW (Portales, NM) and on WXXI (Rochester, NY), and later this month it will air in several other states including Georgia and Montana. I am hopeful that the documentary will air in as most major cities, though this is a decision that is at the discretion of each local station. 

When documentaries like this air on public television, it is common for the host stations to include a discussion with relevant community members. If your local public station decides to air this documentary and you would be willing to make yourself available for a panel discussion, I would encourage you to reach out to your station to offer your participation. It could be a great opportunity to discuss how important it is to Transform the Way Pain is Perceived, Judged and Treated as described in the 2011 IOM report Reliving Pain in America.

Dr. Webster is building a list of the stations and air dates/times for the documentary, which will soon be on the documentary's website, 


Please visit the website periodically to check availability in your area and/or contact your local PBS station. 

The release of this film is timely, and it offers the opportunity to have an open dialogue with our healthcare providers and our communities.

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


Wednesday, February 22, 2017

Take Action NOW if you are a Medicare or Medicaid Patient taking Opioids for Pain


CMS to make CDC "Opioid Guidelines" policy

Friday
MARCH 3, 2017

As stated in my article Count Down 2016 – CDC Opioid Prescribing Guidelines and Chronic Pain, there are drastic differences between a policy and a guideline. Is the CDC acting in good faith? Why are the Centers for Medicare and Medicaid Services (CMS) morphing a guideline into a policy, potentially putting millions of taxpayers in harm’s way? They have not been properly represented. Is CMS aware that the CDC did NOT consult with all stakeholders or do an in-depth literature review or follow any of the other policy procedures set by our government? My biggest fear is that the CMS is basing their decisions as though the CDC guidelines are already a policy. They are assuming the statistics they received are unbiased. See Why should we hold the CDC accountable?

The following is an excerpt of an article written by Rick Martin, Guest Columnist for Pain News Network. You can find his letter here. Please comment to the Center for Medicare and Medicare Services.

Change takes work if the pain community is going to stop the Centers for Medicare and Medicaid Services (CMS) from making the CDC’s opioid prescribing guidelines mandatory for millions of Medicare patients, including a ban on daily doses higher than 90 mg morphine equivalent (see “Medicare Planning to Adopt CDC Opioid Guidelines”).

We don’t need CMS and the insurance industry dictating what medication a physician can prescribe for pain or the appropriate amount of medication needed (see"Insurers Behind Medicare's 'Big Brother' Opioid Policy").

Rick asks that we share with at least 10 people and ask them to share with ten more. I decided to share my letter with everyone in my social networks via this blog. Surely, ten of my many friends will keep the ball rolling. Rick gives his permission to use his letter, and you are certainly welcome to use mine.

---Begin---

CMS at this email address: AdvanceNotice2018@cms.hhs.gov

Subject line: CMS Disregard for Governmental Standards in Policy and Procedure-Putting Patients in Harm's Way

To Whom It May Concern:

Let the record show that I, Celeste Cooper, oppose the Centers for Medicare and Medicaid Services’ plan to align its policies with the CDC Guideline for Prescribing Opioids for Chronic Pain. The “Guidelines” did not go through the required process for policy development, and many feel they are biased. We as citizens, taxpayers, and people living with chronic pain were not represented fairly, nor was ALL the literature reviewed or processes followed that were put in place to protect consumers from the consequences of prejudice.

“Guidelines” give physicians and other licensed prescribers the discretion in determining what is right for their patients. However, your policy as presently drafted will make the guidelines mandatory for doctors, patients, and pharmacists. And, what are the provisions for end-of-life and cancer pain?

On June 1, 2016, Dr. Debra Houry, Director of the CDC’s National Center for Injury Prevention and Control, wrote the following:

“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain. Specifically, the Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy. The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making.”

Why would the Centers for Medicare and Medicaid Services (CMS) try to adopt a guideline as a policy? This has the potential to put millions of taxpayers in harm’s way, because they have not been properly represented.

Advocates have shared their concerns over favoritism in the drafting the CDC Opioid Prescribing Guidelines of favoritism in drafting the CDC Opioid Prescribing Guidelines. (See links to reports below.) My biggest fear is that you, the CMS, are basing your decisions as though the CDC guidelines are already a policy that has met the standards of law. You are assuming the statistics reported in the CDC Opioid Prescribing Guidelines are unbiased.

Can you in good conscience implement a guideline as policy when it has not met the test set forth by our government, for and by the people?

Sincerely,

Celeste Cooper, RN, advocate, Medicare person living with chronic pain


Reports:

American Academy of Pain Management Statement to the CDC on the Opioid Prescribing Guidelines
Richard Martin, RPh, U.S. Department of Health and Human Services, June 1, 2016 pdf
https://static1.squarespace.com/static/54d50ceee4b05797b34869cf/t/578e661603596e40a74db59e/1468950040230/Houry+letter.pdf  (accessed thru Pain Network News, CDC: Opioid Guidelines 'Not a Rule, Regulation or Law'
A Former Federal Peer Reviewer’s Analysis of the Draft CDC Guidelines, National Pain Report
Congress Investigating CDC’s Opioid Guidelines by Pain Network News
Shared at the Addiction Treatment Forum
Congress Investigating CDC’s Opioid Guidelines

---End---

BCC:
U.S. Pain Foundation:  contact@uspainfoundation.org 
National Fibromyalgia and Chronic Pain Association info@fmcpaware.org
American Chronic Pain Association:  acpa@theacpa.org  
Alliance for Balanced Pain Management:  info@alliancebpm.org

I also sent a copy to my senators and legislator., which had to be done on their contact form.

Find your senator https://www.senate.gov/
More links can be found on my website via http://www.celestecooper.com/advocate.html

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.


Saturday, February 11, 2017

Partners, Friendships, Chronic Pain and Illness

(Updated February 25, 2017)

Fortifying friendships and reclaiming romance in the lives of those of us who live with chronic pain and/or chronic illness is something we should do throughout the year.

friendship = the emotions or conduct of friends; the state of being friends. (Google, 2-11-2017)

We have all sorts of relationships. For instance, we have relationships with co-workers, our doctors, our barber, or hairdresser, and sometimes even with the person who delivers our mail. But, none is as necessary to our emotional well-being as our relationships with family, life partners, and friends. 

The relationships that prevail are those that make us feel safe. They allow us to share in problem solving and lift us up in joy and celebration. These particular  connections nurture our love, trust, forgiveness, and support. They deserve our attention and our time.

___________________________________________________________

My Personal Testimony
I can testify that just a few changes on my part have made a huge difference in the way others react to me and my disabilities. My friends say that previously they were afraid to share things with me because of my health problems and their unpredictability. Because I have learned how to share my experiences and how to keep the lines of effective communication open, they are no longer intimidated by me. I learned that my behavior and reactions to others only hampered smooth interactions with friends and family.


___________________________________________________________


Friendships play a key role in our happiness. So, plan to send a message of gratitude to your special people. 

Walking with a friend in the dark is 
better than walking alone in the light.
~Helen Keller

Check out the slideshow written exclusively for Health Central, 8 Ways to Reclaim Romance this Valentine’s Day the article written for ProHealth, 10 Things that Sustain Fibro Friendships, my Sharepost for Health Central, Disbelief, Relationships and the Stigma of ChronicPain. Check out my website on relationships, communication, and other coping strategies. I hope you find them helpful for renewing current and past relationships and finding new ones.

P.S. This blog has been updated. The original was shared by ProHealth and has hit the Google Health search. We never know how or where our words will be shared. Thank you to all my readers and followers for your unwavering support. These relationships inspire me.

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

Sunday, January 29, 2017

A New Year's Resolution with Pain



My body aggravated, confused by physical tests,
But pain lacks capacity to conquer my best.
Dear pain, for you, is a New Years request.

Don’t cloud my wits—attack, bother, or nag.
My mind won’t accept what it is that you add.
Expect the consequences when you are bad.

Mindful of judgments you pose to my ear.
In positivity a spirit is absent of fear,
Affirmations, my armor, protect what is dear.

Don’t threaten my spirit break me or make me weak,
I only negotiate limits that bring me relief.
Pain fraught with courage doesn’t end in defeat.

No blind expectations; we are akin,
But mind—spirit nurtures what resides from within.  

So it is with resolve that this New Year begins.


Wishing all my fellow spoonies, a year of days each filled with gratitude and resolve.

In healing,,Celeste

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


Other reading:


~ • ~ • ~ • ~ • ~ • ~

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

Friday, December 30, 2016

Count Down 2016 – CDC Opioid Prescribing Guidelines and Chronic Pain



2016 has provided many changes in the way pain is perceived, judged, and treated. Unfortunately, some changes have had dire consequences for those living with chronic pain.


The CDC Opioid Prescribing Guidelines

There is little doubt that the CDC opioid prescribing guidelines for primary physicians have affected Americans living with chronic pain.

As suspected by advocates, the CDC's opioid prescribing “guidelines” have been perceived by many as a CDC policy, when they are NOT. 

 “Policy’ is defined as a law, regulation, procedure, administrative action, incentive, or voluntary practice of governments and other institutions.”

In a Medscape article, New CDC Opioid Guideline: The Good, the Bad, the Ugly, Charles E. Argoff, MD dissects the CDC Opioid Prescribing Guidelines, asking many questions that would have been posed during the development of a CDC policy, had there been one. As Dr. Argoff suggests, there are some very good things about the guidelines. But, other important deliberations were not included. It is my opinion that the CDC made a grave error when they ignored their own policy process, which requires rigorous investigation, planning and implementation on public health issues.

Why does it matter?

There are drastic differences between a policy and a guideline. Look at the wording for the “Prescribing Opioids for Chronic Pain Workgroup (Opioid Guideline Workgroup)”, of which some people had an undisclosed conflict of interest. These folks had the liberty to handpick “evidence” to prove their own opinion, ignore concerns brought up by other workgroup members, and publish them without advanced notice for public comment, an action that left many to distrust the CDC and their agenda. Advocacy groups pushed back until the CDC reopened a comment period, but it became evident it was an exercise that would have no effect on the guidelines; they continued to  ignore the voices of all the people. 

So, we are left wondering why the CDC, a government agency that focuses on public health, wouldn't  follow their own policy development protocol and include all stakeholders. 

I doubt the CDC set out to harm so many, but their guidelines have. I hear the cries of abandoned patients kicked to the curb to suffer withdrawal without help. And, others who are being weaned only to have their pain return to catastrophic levels, because physicians have suddenly done an about face. I have read the stories of family members raising their voices to let people know their loved one took their own life because these guidelines have led to the denial of access to moral and ethical care. If you or someone you know has been harmed, please see  HELP - Guidelines for Pain Warriors.

Look Forward

Leaving 2016 in our review mirror, let’s look toward 2017 with hope. The guidelines have been met with great scrutiny. There is opportunity in adversity. I am grateful for Dr. Argoff and many other physicians and advocacy groups who speak up for patients and their care. 

In healing,,Celeste


Other reading you may find helpful:




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

Celeste's Website

Celeste's Website
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