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. http://www.senate.gov/

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.

Sincerely,

Ph:

Email:

Address

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

 

Disability and Invisible Illness: An Interview with 

Attorney Anthony Castelli

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:

https://youtu.be/d7seNJnEoVE

*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:

• AnthonyCastelli’s website, Social Security Disability Cincinnati 
• Celeste's website on the page “Pain and Disability”
• Also see the Social Security Administration site. http://SSA.gov

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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—Sharecare Fibromyalgia Health Expert

NEW Website: http://CelesteCooper.com

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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Entering the World of Now in Recognition of Poetry, QiGong, T’ai Chi, and Yoga Awareness Month

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

Living in the present can seem daunting to those of us who live with chronic pain, but when we focus on the beauty around us, we can take a respite from our physical being. Our perception is our reality. In addition to writing books and advocating, I write poetry. I am not a great poet, but finding words that tell a story lifts me up in the present. I am not thinking of things that have happened in the past, or wishing for the future, instead I am fully vested in the now.

Entering the World of Now © by Celeste Cooper

Mindful presence wraps me in a legacy with the sagest of souls.

Inspired by words of wisdom my mind flows naturally with their goodwill.

Great people influence my desire and curiosity for being present.

There is only attendance and resolve when I live in the world of now.

In every birth of every living thing, there is purity, a truth.

Innocence bares the gift of a new beginning.   

Many tongues speak the language of nature’s primal significance.

A flower speaks as it reaches for the light; watch it grow in the world of now.

My spirit is filled with the melody of joy offered by the songbird.

Gratitude is in knowing its influence in finding my song to sing.

A soul soars to the new heights by appreciating the offerings of its existence.

Listen closely; my voice is shrouded with loveliness as I enter the world of now.

Talk about living in the moment, “The World of Now,” recognizing April as poetry, Qi Gong, T'ai Chi and Yoga awareness Month, all these things can be particularly helpful for people living with chronic pain.

Watch the trailer by our friend and fellow author, internationally known T'ai Chi and Qi Gong expert, Bill Douglas, on my NEW website, http://CelesteCooper.com. Bill developed the stress management program at Kansas University, is an expert for Dr. Andrew Weil, and he has been kind enough to endorse several of our books.

You can find the trailer on my Qi Gong Page, here. Learn more about T’ai Chi on my new website, here (you can learn more about him by clicking on the link with his name, Bill Douglas). Find information on Yoga, here.

In healing and hope, Celeste

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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—Sharecare Fibromyalgia Health Expert

NEW Website: http://CelesteCooper.com

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

Can Aerobic Exercise Reduce Fibromyalgia Symptoms? by Celeste Cooper

The answer to this question, "Can Aerobic Exercise Reduce Fibromyalgia Symptoms?" is tricky because there is evidence that aerobic exercise can reduce fibromyalgia symptoms, and there is evidence to suggest it can increase fibromyalgia symptoms.

The Cardiovascular System

In regards to helping symptoms, aerobic exercise is movement that increases your heart rate. Because the heart is a muscular pump, making it work by increasing heart rate, aerobic activity improves the strength of the heart walls, making it more efficient. The heart can eject more oxygen rich blood to the cells.  Exercise also releases the feel good hormones thought to be in short supply for those of us who have fibromyalgia and cellular oxygen deprivation has been noted in some studies..

The Lymph System

Exercise or movement of any kind is the engine, the only engine that drives the lymph system, which is responsible for gathering, filtering, and removing cellular waste from the body. When the lymph system is working right, or we aren’t moving enough, swelling occurs in our extremities, a source of complaints for many people living with fibromyalgia.

The Muscles

Myofascial pain syndrome (MPS) is a condition that can be misdiagnosed as fibromyalgia and it can coexist with fibromyalgia. If you have myofascial pain syndrome, make sure your muscles are well cared for and returned to their normal resting length before exercising, including weight bearing exercise or weight bearing of your body or static positions during Yoga. Otherwise, you may feel the exercise is worsening your symptoms because of stress on muscles with trigger points. Healthy muscles ward of the trigger points of MPS, so exercise is good for prevention, but not for treatment. Opting for T'ai Chi or Qi Gong might be a better choice.

Autonomic Effects

Some fibromyalgia patients have a condition called postural orthostatic hypotension. If you have this condition, aerobic exercise can harm you. Other studies suggest that some FM patients have a heart rate variability. In other words, when you exercise, you cannot reach your target heart rate, through no fault of your own. You body is not responding as it should.

What Next?

The best way to treat our body is to move it. Maybe we don’t tolerate exercise, maybe we tried too much too soon, maybe we have a joint problem that keeps us from doing moderate aerobic exercise, but even our joints do better if we move them. The best thing to do is move and use common sense. Nobody— nobody—NOBODY should start exercise without slow conditioning; magnify this by 10 for the  5 million Americans 18 or older who live with fibromyalgia.

When we say baby steps, really think about how a baby starts to walk, develop muscle slowly with certain movements.

So the short answer to “Can Aerobic Exercise Reduce Fibromyalgia Symptoms?”

• One size does not fit all.
• Start low and go slow.
• And by all means—MOVE (even if it means exercises done in bed or requires the assistance of a caregiver).

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(Signature line appended, April 2018)

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Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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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. 

Make a Public Comment on the National Pain Strategy by Celeste Cooper

The National Pain Strategy is out. 

You can view it and download it here. 

Public comments on the draft National Pain Strategy must be received no later than 5 p.m. EST on May 20, 2015. Written comments sent electronically are preferred and may be addressed to NPSPublicComments@NIH.gov

Following is mine.

To whom it may concern:

I agree that collaboration between primary and pain specialists is helpful in some cases, though I do not believe it is mandatory, and this is why.

• Many pain specialists are only interested in interventional care.
• Monthly visits for the pain patient who uses a non-escalated dose of opioids over a period of years, for instance, is time consuming and costly to the patient and society.
• Forcing patients into a chronic pain program that have not had any red flags, are not a safety risk, could create perceived stigma where there was none.
• To think that a primary physician cannot complete continuing education courses for management of mild to moderate chronic pain is ridiculous.
• Primary physicians are on the front lines. They will be held accountable for prevention strategies, but they aren’t able to make assessments for treating pain? This seems like tying their hands behind their backs. Board certified family physicians should not be segregated from treating uncomplicated chronic pain independently. Who is better trained in meeting the biopsychosocial needs of a patient?
• Certainly, complicated chronic pain should be under the supervision of a pain specialist, however not all patients meet this criteria, and not all pain specialists take a biopsychosocial approach. It would be interesting to have the data on this and I am grateful you are doing just that.

What I like as an RN and a Chronic Pain Patient

• Core competency in treating complicated chronic pain.
• Addressing the stigma of chronic pain.
• A biopsychosocial model.
• Collecting data that will improve outcome based treatment.
• Recognition of the need for programs that address patients as a whole.
• Studying chronic pain as a disease.
• Advocating for complimentary treatments that work, with the goal of making them accessible to all patient regardless of ability to pay.

Playing Devil’s Advocate

Standardizing electronic records in a free corporate society may not be possible. This should have been planned out before it was ever initiated. I have physician family members who tell me EMRs will not be practical as long as there are so many different computer programs.

Have you ever taken any of the alternative drugs offered? Why aren’t we equally concerned about the abuse of drugs like Neurontin® or Lyrica®? There was not one mention of these drugs in this report. Isn’t focusing only on opioids stigmatizing?

Will all insurance companies be willing to pay for integrative treatments? If not, which is most likely, doesn’t this mean those of us without deep pockets will not be able to afford the complimentary care our physicians expect? It is difficult to get Medicare to pay for TENS units and supplies. But they will pay for interventional procedures, some that are costly to society and have not been proven to bring any lasting effects. How can we curtail spending if we put all pain care in the hands of already overloaded pain specialists?

How can we force private practice pain physicians to adhere to and develop a clinic that takes a biopsychosocial approach to treatment? Is this not a violation of free enterprise of our nation? Not that I don’t agree this is the right approach, but in practicum, is it possible?

How are we to stop the stigma associated with chronic pain if opioids are seen as bad? The patient’s who benefit from opioids, that do not require escalated doses of many years, and do not tolerate alternative drugs, like myself, are not identified in the data. Without this data, won’t chronic pain always have an associated stigma? The last data I saw was that 70% of patients using opioids would not abuse their medications. Can we expect future data on this?

How many overdoses occur from under-treatment of pain? Can we expect a comparative analysis? Why is opioid treatment for chronic pain left out of the conundrum of opioid statement? Isn’t this stigmatizing?

Despite best efforts, chronic pain will exist. When the patient does approach their pain in a biopsychosocial way (I write books on this and practice it), and their pain persists, will they feel inadequate, isolated, and depressed, all the things a multimodal approach is supposed to fix?

Conclusion

Looking at chronic pain as a public health issue is the right approach in my opinion. It will avail resources that wouldn't otherwise be accessible. The report is comprehensive, there will be roadblocks in implementing all the suggestions, but hopefully generations to come will benefit. As an educator, I was impressed on seeing short-term to long-term goals. This strategy provides a mechanism for reassessment and revision.

Chronic pain devastates the lives of people living with it. Patients did not ask to have injury, anatomical defects, or disease processes that create the chronic pain web of deceit. Acceptance is necessary for forward momentum, and that doesn't include just the patient, it also includes their provider, their families, their employers (if they are lucky enough to have one), their friends, and society in general.

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. 

~ • ~ • ~ • ~ • ~ • ~

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate—Sharecare Fibromyalgia Health Expert

Website: http://CelesteCooper.com

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

What’s the Big Deal about Sleep? by Celeste Cooper

"When I woke up this morning my girlfriend asked me, 'Did you sleep good?' I said 'No, I made a few mistakes." 

~Steven Wright

Why is Sleep Important?

Sleep is a period of time when our brain and body take a break from daily stress. It’s something we all need and something we look forward to doing. Or is it? For anyone who has insomnia, fibromyalgia, chronic fatigue syndrome, chronic pain, or a primary sleep disorder, that is the million-dollar question.

We are all gussied up in our soft sleepwear and we begin our evening ritual for SLUMBER.

Schedule bedtime

Limit physical activity

Use comfort measures

Meditate

Breathe

Eliminate stress and food

Remember nothing—clear your mind

Excerpt Integrative Therapies… (Cooper and Miller)

So why doesn't it come, and if it does, why doesn't it feel like it?

How is Sleep Dysfunctional?

Regardless of the cause, it’s a real bummer when we don’t sleep. We glace at the clock and it is 3 a.m. ; we are still AWAKE, or it’s 7 a.m. and we realize we slept through the night, hooray! But, when we start the day, we realize it didn't matter. We are still POOPED OUT. The tumble begins (sometimes literally). We become agitated and our internal dialogue does not reflect happiness over the non-event.

Insomnia

Whether insomnia is a primary sleep problem within the circuitry of the brain or it is due to physical pain, a snoring bed partner, a pet that can’t settle in, or all of the above, the results are the same. Anyone who hasn't had sleep or quality sleep knows sleep deprivation psychosis, headaches, cognitive deficit, and problems with gait, tremors, and generalized irritation with the world around them.  

Sleep Apnea

Oxygen deprivation causes problems, significant ones. Some people stop breathing several times during the night. The body’s organ systems are affected because the body relies on oxygen for survival. This is called sleep apnea. Sleep apnea can occur for many reasons, but the most common cause is some type of airway obstruction. If you have been told you snore a lot (not what you think you do, like my husband), discuss it with your doctor. This seemingly annoying behavior to your partner is more than annoying to your body.

Slow Wave Sleep Progression

When the slow wave stages of sleep, when micro healing occurs, are deficient or absent maintenance or sleep and sleep quality are affected. This central sleep problem (occurring in the brain) is seen on a special EEG used during a sleep study. All those electrodes plastered to our head works much like an EKG does to see how the heart’s electric circuit is behaving. We often talk about body organs, but forget that every part of our body is wired, and like a frayed wire in the attic, sputters and spurts occur. Sometimes they are so severe the house blacks out or burns down. We need the deep stages of sleep for healing and some believe lack of these healing stages is an underlying factor in not only fatigue, but also the muscle pain of fibromyalgia.

What Else Interferes with Sleep?

Other things that interfere with quality include teeth grinding (bruxism), migraine, irritable bladder causing nocturia (getting up several times during the night to urinate), periodic limb movement (often called restless leg syndrome, only it is different because it occurs during sleep) and just about anything that interrupts the sleep cycle, including some medications or combination of medications.

“Depression, sleep deprivation, pain, fatigue, unhealthy relationships, and unhealthy coping mechanisms prevent us from achieving physical, mental, emotional, and spiritual balance. It is important to talk with our doctor about our sleep patterns, depression, and difficulty maintaining relationships, but we can manage challenges too. We can manage challenges by…"
(Excerpt) Spring Devotions (Cooper and Miller)

SLUMBER My Friend– the Conclusion 

Sleep is necessary for resting the mind, boosting the immune system, and fostering overall health and relationships.

Be sure to read the footnotes to this blog.

Some causes of sleep problems are quite treatable while others need ongoing time and our attention. But, regardless of the cause, our brain needs to prepare for sleep. Keep that acronym in mind—SLUMBER. It may not cure us, but it can’t hurt.

Human bodies respond to routine.

Make it a good one.

Now, I am not a sleep expert, but as a patient, I understand the repercussions of absent stage II and III sleep, insomnia, bruxism, nocturia, and severe periodic limb movement. So, if you share the rumbles, dark skies, and threatening clouds of sleep disruption, reach for the rainbow. Consult with a healthcare professional that specializes in sleep. They have a toolbox full of helpful strategies. Keep an open mind; help could be on the way.

 

March is #SleepAwareness Month. Here’s to those forty winks!

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, The Pained Ink Slayer. 

Celeste’s OTHER BLOGS ON SLEEP:

• Is sleep keeping you awake at night? Poor sleep in people with fibromyalgia and chronic fatigue syndrome.
• The Mystery of Sleep in Fibromyalgia and Chronic Fatigue Syndrome
• Sleep oh sleep, where art thou? Could your fibromyalgia medications be causing insomnia?
• Snooze News - The conundrum of sleep deprivation
• “Wake Up Sleepy Head” - Non-Restorative Sleep in FM and CFS

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(Signature line appended, April 2018)

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

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. 

Guest Blog on MINDFULNESS by Melissa Swanson

Following is a guest blog by “Fibro Warrior” Melissa Swanson on her relationship with mindfulness. Read about how her setbacks became the foundation for understanding mindfulness. 

Melissa's Blog

The day that I started to write this article it was an amazing coincidence I was watching 60 minutes  with a interview with an expert on mindfulness.  I reached down into the basket I keep next to my living room chair and pulled out the his CD. I had purchased it well over a year ago when I had been told probably for the third time by my friend that I should try it.

As we watched the report on 60 minutes I told my family that this is what I am supposed to be doing. I have tried it and had not been successful at it.

I can not count how many speakers or friends have told me to try mindfulness. Try asking a Type A person with ADD to lay down, shut your mind off and concentrate on your breathing while releasing each part of your body.

I was getting stressed out just trying relax. My mind would wander to the noises being made in our living room, the things I needed to do, then “STOP IT” “CONCENTRATE”. “Relax, breathe, shoulders, arms, “need to email the Volleyball parents” Ugh!!!

Each and every time I would try to relax I would get so stressed because I couldn’t focus on only my breathing and relaxing my body.

While attending the NFMCPA LAPAN advocacy training seminar, Dr. Michael Olpin was one of the speakers. Dr. Michael Olpin is a professor of Health Promotion at Weber State University and is the director of WSU’s Health Promotion Program. He is also director of the WSU Stress Relief Center. He earned his Ph.D. in Health Education from SIU, and his Master’s and bachelor’s degrees in Health Promotion and Psychology from BYU.

We were told his focus is stress management, mind/body wellness, mental & emotional wellness, and wellness coaching.

He said “a nice quiet room is best” and to forget using relaxation tapes like sounds from the rainforest.

He sat in his chair, closed his eyes, exhaled and let his body relax.  “Silently focus and repeat a specific word for 10-20 minutes.  This word you choose is called your mantra.  Choose a single calming word like peace, serene, silence.  He chose the word (one). Allow your mind to whisper your mantra over and over at a pace of about one repetition every 3-4 seconds”

He softly said the word 1 took a slight pause and then repeated the process 1..1..1…

He was in the middle of counting and started talking the thoughts that had popped into his head. “I need to remember to call so and so and I need to do…. Then when he realized he had loss focus he stopped and began again 1….1…1

What he said next was the turning point for me. “It is okay for your mind to wander”. “The important thing is to not get upset if you lose focus”.

Once you realize that you have lost your focus just start again 1..1..1

It was ok if I my mind wandered? Someone just told me I didn’t have to be perfect.

Then it was our turn… Softly he said

“Close your eyes, let your breath out, feel your body go limp and start counting 1,1,1.

Okay for the next 5 minutes we are going to try it.

Sitting in this uncomfortable chair in a conference room with all these people my body actually began to relax.

Yes, it did wander but as soon as I caught myself I started again.

“Slowly return to normal waking consciousness.  Take at least 2 minutes to return.”

I had finally discovered something that worked for me.  I needed to have someone tell me it was okay to get off track without stressing about it. Also, like every other treatment, medication, diet we have to keep trying new things until we find the right one that fits us.  I now have success with the CD’s that I had stressed out every time I had tried.

The last issue of the NFMCPA’s magazine Fibromyalgia & Chronic Pain Life’s Winter 2014 issue has a very informative and helpful article by Kim Jones and Mary Casselberry.

In addition to Dr. Michael Olpin’s website and his books ~ “Unwind; 7 principles for a Stress-Free Life & “The World is Not a Stressful Place; Stress relief for everyone” my friends also recommend Jon Kabat-Zinn ~ Full Catastrophe Living Using the Wisdomof Your Body and Mind to Face the Stress, Pain and Illness  and  Dr. Bernie Siegel. 

It seems that everywhere I turn someone is talking, tweeting or blogging about the benefits of Mindfulness.  I don’t know about everyone else but my life is so busy once I trained myself on how to do it finding the time was the next hurdle.  I found the time.  I chose to practice mindfulness during the time that I am waiting in my car for my Teenager after practices and games, in my office at school during my lunch and even as I soak in the bathtub. It is a cold winter and I do need to find time ways to help my body get through until Spring and Mindfulness is one of those ways. 

How can mindfulness work in your life?

About Melissa

Melissa Swanson is a chronic pain patient, advocate, and author. through her Facebook page, she offers positive encouragement, medical information, resources, and support to 10,000 + fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice".  Graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association.  Member of the Leaders Against Pain Action Network.

Facebook: www.facebook.com/survivingfibro

Blog: www.survivingwithfibro.wordpress.com

Twitter:  MelissaSwanso22

Email: swansonmjs@gmail.com

A Gift

I give many thanks to Melissa for sharing her heartfelt story on mindfulness and her personal journey with chronic pain. Her support means to world to me as a friend, fellow patient, and author. I couldn't possibly think of a better way to introduce you to the helpful tips in Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, Spring Devotions. Thank you Melissa for being my friend, for your collaboration, for your leadership and your support.

Other Tips:

What’s New in Mindfulness Research from Health Central Editor

Fitness Magazine, Meditation for Beginners: How to Meditate 

If you need additional help, visit George Green’sMindfulness Advantage

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Update 2015

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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.