Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Sunday, May 4, 2014

Walking In Strength: Guest blog from a Spoonie Clarissa Shepherd


Fellow spoonie (see "Moving into the Month of Spoonie Awareness"), Clarissa Shepherd, has a unique talent for engaging "Fellow Travelers" with fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome through her support group on Facebook. She encourages others to speak about their concerns through ongoing weekly topics of "Sharing, Caring, Grateful, and Did Wells." Following is a note she has written to those who walk this path together.

I thank my friend for allowing me to share her intimate thoughts, words of encouragement, and recognition of all our Fellow Travelers.

~~~~~~~~~~~~~~~~~~~

For those of us who face chronic illness each day, thinking positive is not an easy task. We don't seek negativity; it finds us. Despite its efforts to interfere, we can still find ways to deal with the up's and down's imposed by chronic illness. I [Clarissa] feel we do a grand job enduring and surviving in spite of the long list of daunting symptoms.



Our journey may be very difficult, long, and tiresome, yet each of you does it with such grace, grace as I've never seen before. Learning to live within our limitations and think creatively is a positive thing. Despite your symptoms, you find ways to rearrange your life in order to live it. I find each of you amazing for embracing change, for finding ways to accomplish daily tasks and entertain yourself. You uncover your hidden talents and discover new ways to embrace change. You're learning an entirely new way of living, a new way of thinking, you've learned how to rethink what productive means to you as individuals and redefine healing, and you are doing it soulfully. With forward momentum, you find ways to accept challenge. You are courageous.

You are a vital human being. This illness is not of your own making. It does not define you. You show your strength and courage with each breath you take every obstacle you overcome; you are fearless, even in your pain.

Now, I want you to take this truth into each day. Allow it to cover your entire being. There will be those in your life that don't, or won't, understand what you face each day. Chronic illness has taught me one very important thing: some people will fill you up, while others will drain you, so choose wisely. 

Know the reality that you are wonderful just as you are. You have a type of bravery that's seldom seen. I see it - I know it's there. Now, believe it for yourself. The strength you show is who you are; it is in you, beside you, and in front of you. Know this and allow the light that's shining guide you, hold you, and sustain you. I applaud the person you are, for you are the description of courage. 

Clarissa Shepherd is founder of the Facebook group Fellow Travelers. She provides support to people living with FM and ME/CFS and she is author of Find Your Way: A Guide to Healing While Living with Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia.

Monday, December 30, 2013

If I Have Seen Further: Looking back at 2013


"If I have seen further, it is by standing on the shoulders of giants."
--Isaac Newton

As most of you know, I am a patient with fibromyalgia, ME/CFS, and other chronic pain diseases.  I am also and RN, educator, author, and pain advocate.  The above quote is one of my favorites because it rings true for me. Without the support of the following people, I could not and would not do what I do.

Rich Carson, founder of ProHealth, and all the people there who do so much to advocate for Myalgic encephalomyelitis/chronic fatigue syndrome ( ME/CFS) and fibromyalgia, and all those who support my work as writer and blogger by sharing this information.

Jan Chambers, President and founder of the National Fibromyalgia and Chronic PainAssociation,  friend, and fellow participant in the Pain Action Alliance to Implement a National Strategy initiative.

Myra Christopher and all the people at the Pain Action Alliance to Implement aNational Strategy  initiative who share my passion for human rights and allow me to advocate with them by supporting what I do as author, and blogger.

Cort Johnson, ME/CFS and FM advocate who offers a wealth of information to our community through his blog Health Rising http://www.cortjohnson.org/ and supports spreading the word about our books.

Karen Richards, health expert at Health Central, fibromyalgia representative for ProHealth, and friend who began her journey as patient and co-founder of the NFA.

Sharecare, the online health information giant who allows me to advocate for fibromyalgia as one of their health experts.

DevinStarlanyl, author, friend and colleague in the myofascial pain and fibromyalgia world who keeps me updated on the latest research and supported me years ago with her tireless education on myofascial pain syndrome while writing our first book.

Dr. Kevin White, friend , colleague, and fellow author, physician, medical editor and blogger

The physicians and other healthcare providers and guest bloggers who have collaborated with me on research interpretation and interviews.

My medical and writer colleagues, and fellow advocates who support me and comment on posts at Linked-In. 

My friends and fellow group and page moderators on Facebook and Google+ who go above and beyond to offer support to the many people suffering with chronic pain, FM, ME/CFS, myofascial pain, CRPS/RSD, Lupus, Migraine, Lyme's Disease, Ankylosing Spondylitis, interstitial cystitis, arthritis and other painful condition, and to those who advocate for health promotion.

My friends and fellow patients who share the Relieving Pain in Kansas City, the PAINS-KC initiative. (Kansas City)

My friends and fellow patients at the East Valley Fibromyalgia and Chronic Fatigue Syndrome Support Group. (Phoenix)

All those who have endorsed our books with inside the cover reviews and those who help us spread the word and leave reviews on Amazon so that patients have tools to live their best life despite pain and disease.

And last but not least:

All my fellow Facebook and Google+ patients and patient advocates who suffer with various chronic pain disorders and illness.  THANK YOU for your comment and sharing of information in an effort to help the many people across the world who share this space with me.

If you are reading this, you know that affirmations are what get me through the day. I hope you will find strength by writing your own.

Adversity is only an obstacle when I fail to see the opportunity.

As I look back at 2013 with gratitude, love, and admiration for each of you, I can look ahead to the new year with hope and promise.


HAPPY NEW YEAR!

Wednesday, October 17, 2012

KaleidoPain NEWS 10-17-12




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KaleidoPain NEWS: Ever Changing Colors of Chronicity
by Celeste, RN, author, patient


Happiness is when what you think, what you say, and what you do are in harmony.
~Mahatma Gandhi




CELESTE’s BLOGSPEAK

 
Book Launch for Those Living with Chronic Pain

Monthly feature for October is CRPS/RSD



FEATURED BLOG or Website



HEALTHY HABITS




FEATURING Q&A by Celeste at Sharecare



THE ADVOCATE



PAIN STRATEGIES



ANNOUNCEMENTS

Important announcement for everyone reading this newsletter!

Following my own in-out rule something new has come in so something old must go out.  This is purely in an effort to keep myself on track and manage my own personal needs as a patient. Read on


IN THE NEWS



Not on Twitter?  Follow my tweets on the bottom of the welcome page at http://TheseThree.com

NEWS FOR YOU !

A new study published by the Bartonella research team at NC State University’s College of Veterinary Medicine–led by Dr. Ed Breitschwerdt–links Bartonella infection to rheumatologic symptoms in patients with historical diagnoses of Lyme disease, arthritis, chronic fatigue, and fibromyalgia. The study is reported in the May issue of the Emerging Infectious Diseases…. 


ROLFING THE RESEARCH 



SUPPORTING THOSE WHO SUPPORT ME

WakeUpNow and National Fibromyalgia & Chronic Pain Association: Fundraising Partners

COMMENT CORNER

Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain – Fall Devotions
Essential and inspiring! Puts us in touch with our unspoken and unacknowledged inner self-understanding that gets pushed aside when pain steals our attention.
--Jan Favero Chambers, President, National Fibromyalgia and Chronic Pain Association

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (Paperback)

5.0 out of 5 stars Love this book! By Anna Leviti "A. Leviti" (MN)
This is by far one of the best books I've read on fibromyalgia...and I've read many…. I love her wisdom and sharing of her obvious expertise in unraveling how to get well and what works AND what doesn't. Good quality book and very well priced.


ABOUT THE BOOKS  



Contributing author to FibromyalgiaInsider Secrets: 10 Top Experts, 2nd Ed. 

BOOK REVIEW

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness [Paperback]

Jon Kabat-Zinn is a mastermind in understanding the impact of the body-mind connection. 

Anyone with chronic illness will benefit from the practices found in this and other books written by Jon Kabat-Zinn.  As a patient, author and fibromyalgia expert, I understand and write about the importance of physical, mental, emotional, and spiritual balance.  The works herein provide a means to achieving that end.

Celeste Cooper, author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection.  (co-author, Jeff Miller, PhD) and fibromyalgia expert at Sharecare.

POINT TO PONDER    

Should I write a  paragraph  about something that has awakened my senses?


*This virtual newsletter is for informational purpose only and is not meant as medical advice.

Celeste's Website

Celeste's Website
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