Tuesday, February 20, 2018

Update: Fibromyalgia FM/a Blood Test and EpicGenetics Landmark Clinical Research Efforts


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According to a spokesperson, the genetic studies on fibromyalgia are well underway – with the assistance of the University of California, UCLA, and University of Illinois at Chicago. There has been a strong response from the fibromyalgia community in participating in these efforts. As you may recall from my blog, The FM/a® Blood Test and Campaign 250: Participation in Fibromyalgia Exome and Treatment Study, EpicGenetics is allowing up to 250,000 participants in this research effort and the opportunity to enroll will likely end later in 2018 to allow for the analysis of the genomic surveys and results announcement. So, if you haven’t already, I encourage you to look into getting the FM/a test now, so you can be part of this important research. Participation  in the research first requires a positive FM/a® Test, and if you do receive a positive test result, you will receive a direct communication from EpicGenetics inviting you to participate.


Researcher investigating possible fibromyalgia vaccine



Additionally, the clinical trial set to take place at Massachusetts General Hospital to evaluate the BCG vaccine as a direct, effective treatment continues to progress toward enrollment and trial initiation. Plans are to initiate the trials during the first half of this year. You can read more about this breaking news in my blog, EpicGenetics Announces Major Clinical Study to Locate Genetic Markers Unique to People with Fibromyalgia and Explore New Treatment Approaches.

Additional:


Thank you for taking this journey with me. 



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

Think adversity?-See opportunity!

Friday, February 16, 2018

Making the Best of AFFIRMATIONS by The Pained Ink Slayer



Celeste’s Photography in Spring Devotions©

                                      
“Words of affirmation are powerful.
Words change lives; words and ideas change the world.”
― Bryant McGill

Affirmations are powerful. They tweak perceptions and provide light in the darkness of chronic pain and chronic illness. Following are tips for writing these personal tidbits that promote positive direction.

HOW AND WHY AFFIRMATIONS WORK


A study in March of 2017 investigated “whether patients’ expectation to pain reduction was associated with pain intensity after morphine treatment in opioid treatment-na├»ve patients with various types of cancer.” What they found is important to understanding how our perceptions affect our ability to cope. Patients with high expectations that morphine would ease their pain had a significantly lower pain intensity experience. Measurable evidence in this study supports the notion that when we expect good, we do better. And that's where affirmations come in. Changing our internal dialogue can have a powerful effect on the way we cope with pain. 

WHAT AFFIRMATIONS DO

·        They encourage positive thinking.
·        They help us express our gratitude.​
·        They present us with purpose.
·        They incite change.
·        They create positive self-awareness.
·        They set examples.
·        They touch our spirituality.
·        They empower us.
·        They connect us to all living things.

EXAMPLES OF AFFIRMATIONS

·        I have no duty to be perfect.
·        I always have options.
·        I am not my mistakes.
·        This is a learning experience.

A few of my personal affirmations

·        Let my spirit be filled with the melody of joy.
·        I embrace detours; they take me to undiscovered places.
·        If I listen closely, I hear the sweet sound of human interaction. 
·        I am sick, I am sexy, I am sixty-ish; I am a scud missile; don't mess with me.
·        I choose my words well and create a voice for the benefit of others.

TIPS FOR WRITING YOUR OWN AFFIRMATIONS

·        Write them as thought they are happening now.
·        Affirm what you want.
·        Keep them short and easy to remember.
·        Keep your favorite affirmations written where you can see them frequently.
·        Personalize them with words such as, I, my, me.
·        Start with thought provoking words that you typically use in your daily life and focus on the goal.
o   I am...  
o   I hear...
o   I see…
o   I feel…
·        Make it positive with words like:
o   grateful
o   smile
o   thank
o   forgive
o   inspire
o   promote
·        Put motion to them with verbs:
o   create
o   do
o   make
o   give
o   follow
o   seek
·        Commit yourself to one affirmation at a time and read it frequently.


* If you have favorite quotes, pick key phrases that bring you in and write it from your personal perspective.

"Defeat is a possibility of try, but to quit scars the soul."
Celeste Cooper, Fall Devotions

​Grab your pen, pencil or keyboard NOW!


Additional Reading:


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

Think adversity?-See opportunity!



~ • ~ • ~ • ~ • ~ • ~

“To unleash victory, I must have an open mind and willing heart, judge not, embrace change, and be a steadfast observer of self.”
  
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.


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

Tuesday, February 6, 2018

A PATIENT's VOICE – Life in Chronic Pain with Frank Elliot


Since the CDC Guidelines on Opioid Prescribing were published, I have been bombarded with requests for help. The number of contacts became too much for this one-person to handle individually. So, I have posted a FB Note, The Pain Advocate’s Corner: How to Raise Your Voice. You will find many links for contacting or interacting with federal and state legislators, medical associations, advocacy organizations, insurance commissioners, and more. Sharing your story is not only a cathartic experience, it is helpful to others, including patients and those who write policies that affect us as a patient community. Becoming involved in movements like No Longer Silent is empowering and a good anecdote for feelings of isolation.

Sit Awhile – Tell Me Your Story© Celeste’s Photography

Many thanks to Frank for sharing his story as a Google+ comment and allowing me to share it with you.

Frank Elliott’s Story

When I hear or read the reporting about the bad side of opioids, I cringe, Celeste. There is seldom any reporting on people like you and me. Many of us need something in addition to meditation, relaxation, pacing, non-opioid pain medicines, and medicines like Lyrica®, which provides pain relief for a small proportion of people and can have horrible side effects. Lyrica® gave me a terribly debilitating and chronic case of inflammatory lymphedema, which has led to me being bed bound and homebound for months at a time. Nothing even approaches the relief I get from 15 mg a day of methadone. My pain drops from an 8 or 9 level to a 2 or 3 level. I've reduced the methadone from 30 mg a day to 15 mg a day as my peripheral nerve damage gradually heals. In nine years, I haven’t had any problems with methadone. I remain very stable on a gently declining dose. Severe constipation is an issue, but I address that issue with daily use of Mirilax®.

I'm a diabetic, have severe, persistent asthma, have chronic pain from nerve damage, a hypothyroid condition, and I am depressed from time to time because it can be difficult to live with a long list of chronic illnesses. If my burning, frying, electric shock kind of pain is under good control, my life can be very active. I don't know how I would be able to handle things or cope if my pain was out of control again. When it was, about ten years ago, I thought passing away might be a viable option. That tells you something about how overwhelming the pain was.

Thankfully, I am much better now and my chronic illnesses are not endangering my life. I am fortunate to have access to a wonderful university teaching hospital pain practice. Still, I am very concerned, like you, that the stories of people like us aren’t being heard. I don't like having to take methadone. I have to be very careful, chart every dose, and make sure I don’t make a mistake. Still, after 9 years with the hospital pain center, the doctors and nurse practitioners trust me. I'm very reliable and steady. My practitioner says, "Frank, if I could only bottle you!" She knows we've tried everything else gradually and only methadone controls my neuropathic pain from peripheral neuropathy.

I think a good place for me to start is with my two senators from my state. I bet they haven't heard the stories of the millions of people who use opioids because they work effectively to control our pain. We are not addicts or drug abusers. We use opioid pain relieving medicines only to control our unrelenting and unmanageable pain. Thank you for listening, Celeste.

Frank’s Afterthought

I enjoy your pieces on lymphatic drainage system massage. My inflammatory lymphedema is in a flare, so it’s time for monthly drainage massages, what my medicine doctor calls Frank's tune-ups. Eight to ten sessions and doing the things they teach me will allow me to regain control. Working together, we've found patterns of my disease and identified warning signs so we can intervene in a timely fashion. I have made a great deal of progress because of the people at the pain clinic. It’s encouraging to me. The teamwork and communication between patients and my wise providers is a wonderful thing.

Celeste’s Note

I am not a journalist; I am a registered nurse and I am a fellow person living with chronic pain. As lead author of five books on “integrative” care, I believe we should have all tools available to us, and for some that includes opioids or state legalized medical cannabis. Access to any treatment that improves our function in any direction, physical, mental, emotional, or spiritual is the right one. 

Have you shared your story?

Additional Reading:

No Longer Silent – I hope you will join us.

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

Think adversity?-See opportunity!



“Listen closely; I hear the sweet sound of existence.”

~ • ~ • ~ • ~ • ~ • ~

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.

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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