Pain Awareness Month 2015 – Mid Month Review with Feature 7- The ACPA- History of Pain Awareness Month

I wish I could share the goodness of the world with everyone. The people I’ve shared have been people who are making an impact in the lives of others despite their own complications. Illness, disability, pain, yet hope enough in their passion’s to keep going… for you.

Some of them I barely know in the sense of talking with them. A few of them, I’ve had less than an hour or so of combined time in conversation exchange. Having the gift of knowing and the ability to feel at higher levels than most, I was compelled to ask these people if I could share them, honor them, and feature them this month. Each one of them, by their own energy, gave me a piece of them, the part that let me show you who they are in spirit. It was by a glimpse of their own souls experiences that led me to reach out to them.

Review

Pain Awareness Month 2015 – Feature 1 – The Faces and Limbs of Pain

https://rsdadvisory.com/2015/08/31/pain-awareness-month-2015-feature-1-the-faces-and-limbs-of-pain/


Pain Awareness Month 2015 – Feature 2 – Trudy Thomas, Living with HOPE Radio Show

https://rsdadvisory.com/2015/09/03/pain-awareness-month-feature-2-trudy-thomas-living-with-hope-radio-show/


Pain Awareness Month 2015 – Feature 3 – Shane Schulz, Arisen Strength

https://rsdadvisory.com/2015/09/07/pain-awareness-month-2015-feature-3-shane-schulz-arisen-strength/


Pain Awareness Month 2015 – Feature 4 – Power of Pain Foundation

https://rsdadvisory.com/2015/09/12/pain-awareness-month-2015-feature-4-power-of-pain-foundation/


Pain Awareness Month 2015 – Feature 5 – Sheila Purcell – United Kentucky Pain Care Action Network

https://rsdadvisory.com/2015/09/15/pain-awareness-month-2015-feature-5-sheila-purcell-united-kentucky-pain-care-action-network/


Pain Awareness Month 2015 – Feature 6 – Epithelioid hemangioendothelioma (EHE)

https://rsdadvisory.com/2015/09/19/pain-awareness-month-2015-feature-6-epithelioid-hemangioendothelioma-ehe/



Pain Awareness Month 2015 – Feature 7 – American Chronic Pain Association

Have you ever wondered about the history of pain awareness month? The American Chronic Pain Association and Partners for Understanding Pain is your last feature share for September.

September is Pain Awareness Month
http://theacpa.org/September-is-Pain-Awareness-Month


Below you will find the history of pain awareness month in a timeline PDF document. Beginning in 2001 with a pain awareness campaign. Did you know? Please consider sharing so that others might learn also. Be sure to share in the documents original form.


Pain Awareness Month History

http://theacpa.org/uploads/Pain_Awareness_Month_History.pdf

For more information

The American Chronic Pain Association (ACPA)
http://theacpa.org/

The American Chronic Pain Association (ACPA)
Partners for Understanding Pain
http://theacpa.org/Partners-for-Understanding-Pain

Pain Awareness Toolkits
http://theacpa.org/Pain-Awareness-Toolkits

You can also find the American Chronic Pain Association on:

Facebook-
https://www.facebook.com/pages/The-American-Chronic-Pain-Association/113362482021895

Twitter-
https://twitter.com/TheACPA
@TheACPA

YouTube-
http://www.youtube.com/user/TheACPAChannel

Pinterest-
https://www.pinterest.com/theacpa/
The information provided is for pain awareness and educational purposes only. All rights reserved to The American Chronic Pain Association for their content.


I hope that I’ve proffered enough of myself this year for you and I wish you all the very best in your journeys to continue to make a difference in the lives of others. I pray each of you get all that you need in this life and give back all that you’re able to.

thank-you-

I wish you all well,

And enough.

~Twinkle V.

Te quiero más

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Stepping Up and Stepping Out with POPF (Power of Pain Foundation)

So many don’t realize what isolation is until they find worth in something or worth finds you. 14 years ago the injury, a right foot mid metatarsal separation changed my life.  In my story Emotional Seperation- Fire ‘N Flight Where Pain and Depression Collide by Twinkle (EKV) VanFleet you will find all the truth you need to and you will also find my story seemingly ends in 2006. My story never ended. 

As the years moved on, I learned to adapt. I wasn’t even on Facebook until 2009. I was however on Myspace where I met many RSD/CRPS leaders, organizations, shared posts, wrote posts to share. I have really never been one to hide my life. What you see is what you get as long as you are able to perceive it properly and fairly. The innocent looking, pretty, slim princess could so easily be the one selling the drugs.. and me? The pierced girl, who wears bracelets, anklets and just kicks it whether in leisure or professionally could be taken as the mobster.  I mentioned recently in a group post, the group that I founded over a decade ago that I am finally glad it’s me. That I am one to be judged, wrongly. For it might be me to make a difference in the world one day on the matter of prejudiced and profiling.  In a sense, I truly can’t wait!

I have done so much in the background over the years. The articles I had written, support given and offered, endless hours spent on so many that I let even my own family become second to all else.  I fell and I came back up. No one knew it. How could they? I didn’t tell anything.

Approximately a year or more ago, I posted a message that said “I need to find my happy” What I meant was that all my posts were bland, to the point, taken as serious. No online hints. No lol’s, no lmao’s, no ~laughs. Just the post.  Someone replied with I’m so happy you have. I was happy, too.

I started sharing posts of laughter, some not so accepted by a few. Some contained curse words, the graphic posts to me were funny and to so many others.. they laughed and laughed. Made their day! To a few they were found offensive, disgusting, wrong.

Suddenly where does that leave me?

It wasn’t until I became a member of the Power of Pain Foundation that I was able to have enough conviction and belief in myself to leave my home again.  Weight gain, swelling, vocabulary that in person is stuttered, lapse of memory, the inability to keep on my feet or even feel good about the life that had become me.

The Power of Pain Foundation showed me that I am so much more that the disabilities and inabilities that I sometimes put myself down for.

They have encouraged me to stay me! In all that I am and all that I might become.  They have accepted my diversities which so many of you will never, just never understand and they let me embrace it and move forward with all of it.

I get my work done and I fall short from time to time. What I have never had is someone putting me down, but instead encouraging me and thanking me for what I can do, not scolding me for what I am unable to do.

Simply put, work is work. Volunteer or not. Sometimes we all need a nudge just like any other job..  before you say but wait! It’s volunteer.. I can only imagine how many other volunteer positions I might have had that I would have been booted out from already. Why? Because I couldn’t get out of bed that day!

My journey with Power of Pain has afforded me the opportunity and want to get my butt out of bed or force my legs to go because it gave me incentive. We lose so much with CRPS/RSD. We need to know we still have some bit of worth. And you do! We all do. It doesn’t matter how small. It doesn’t even matter if you think there’s nothing left.. you have worth, you always will. Please remember that!

I’ve been POPF’s California Ambassador for a couple of years now. I have organized and attended one major event. I have done guest appearances on the Living with HOPE Radio Show with Host Trudy Thomas, I have Co Hosted a Bit, my grandson was featured in an article with Barby Ingle, I wrote the Forward for Barby Ingle Taylor and Ken Taylor”s book Real Love and Good Sex for Pain Patients and Their Partners 

I can’t even remember what else I might have done or achieved.

I thought that I wasn’t doing enough for POPF that I had let them down. These were my thoughts. I thought, my lack of mobility was holding me back from being able to interact with the local community and at large, the entire California Community. I thought that my immediate family issues were setting me aside because I was taking care of them. It wasn’t so.

And then..

I was honored with the promotion to Executive Board Member.

My goal now is to continue on building my POPF California Team. Throughout all of California.

I continue to search at random (with a few helpful hints) for the Power of Pain Foundation’s Patient Fundraiser Program for Youth, each month we choose 4 patients. From neuropathy, nerve diseases and disorders, RSD/CRPS, cancer treatment, medication and devices to other that will ease the life of a youth between 0 and 20.

And we divide $200 by 4. Power of Pain Foundation adds $50 to each chosen youth’s fundraiser account.

If you know anyone who fits our program specifications please contact me.

If you are in California and if you would like to be considered to represent POPF California, in any way, please contact me.  Please understand I cannot promise anyone a representative position.  I would however be most interested in speaking to you from any area of California of which you live.

Twinkle VanFleet, Twinkle.CA@powerofpain.org

May I add that POPF also offered me something else…

In my 20’s,  I was in the running to gather signatures for WSAC City Council

Accidentally in a sense..  Barby Ingle gave me back something, I lost so long ago.

Lets just say.. I’m on it now. And this time,  Que Sera, Sera

Continuing to step up and step out..

and about with POPF.

 

~Twinkle V.

 

Living with HOPE Radio Show Now A “Featured Host” On BlogTalk

Hope2

I am absolutely thrilled to announce that  The Body, Mind and Spirit Network is now a Featured Host on Blogtalk Radio! This includes the popular Living with HOPE Radio Show sponsored by the Power of Pain Foundation.

Living with HOPE began in 2007 under the original title Living with RSD. It was Trudy’s hope to learn more information about her own health issue, the debilitating and painful illness RSD/Reflex Sympathetic Dystrophy and with that a show was born. She interviews doctors, therapists and patients; both traditional and more recently alternative practitioners with expertise that runs from prevention to cutting edge technology.

Trudy strives to empower, inform and educate her listeners with information that may not be readily available in their local area. Through the power of the internet she has the ability to communicate with and speak to some of the most knowledgeable doctors and researchers in the world.

Guests/Interviewee’s have included: Physicians, Counselors, Spiritual Healers, Psychologists, Alternative and Homeopathic Healers, Medical Authors, Biographers Researchers, Clinical Trial Physicians, and many more.

Some Topics have included: Meditation, Biofeedback, Guided imagery, Relaxation techniques, Breathing exercises, Holistic healing, Coping strategies, Distraction, Depression, Spinal Cord Stimulation (SCS), Pain Management, Medications, Chronic Pain Treatments, Ketamine, Calmare (Scrambler Therapy), Mirror  therapy (Mirror Box), DMSO, Low Light Laser Treatment Therapy (LLLT), Functional Restoration, IVIG, Neuropathies, RSD/CRPS, Neuro Inflammatory Disease (NID) and much more.

Listeners are encouraged to call in to ask questions of the guests during the show 1-347-884-9691, and if you miss the show you can listen later by clicking on the play button or downloading the shows archive. If you are on the go, you can call into the show through your home phone or cell phone at the above number and listen live. To speak with the host or ask the guest a question press 1, you can still listen to the show while waiting to go on the air, don’t hang up! Your questions and comments are important! A chat room is also available during the live show.

Living With Hope is broadcast live on Monday’s 4:00 p.m pacific and Friday’s 9:oo a.m pacific.

You can post your questions in the chat room to be answered on air. If the time is not convenient to stop by the live shows, you can listen to the archives at any time on the radio page.

Savy Seniors, Trudy’s newest show is live on Wednesdays 3:00 p.m PST. with co-host, Sharon Rowell covering all the latest news about health, medicine, safety, caretaking and programs that are available to help seniors live a fun, productive and long life.

And, for fun of course Trudy does a Saturday show, 3:00 p.m PST,  with readings from spirit given by Seers of the Soul and lots of fun music from the 50’s-80’s. Oldies but goodies.

If you are interested in being a guest on any of these shows, please email Trudy at goldfield_nv@hotmail.com.

Living with HOPE is Sponsored by the Power of Pain Foundation

popf logo 300dpism

We hope to see you there!

NERVEmber (November) is National RSD/CRPS Awareness Month!

November is our nationwide Reflex Sympathetic Dystrophy (RSD), Complex Regional Pain Syndrome (CRPS) Awareness Month!

The Power of Pain Foundation calls this Nervember. There’s 2 meaning’s behind it and I hope that I’m explaining it properly. Nerve of course would be for nerves, and the nerve pain and/or damage we experience and ember, coals, fire, what our pain feels like. Barby Ingle Executive Director of the POPF explains during her hour long interview on the Living with HOPE Radio show Monday October 29th, 2012.

You should be able to find that episode here: Living with HOPE with Guest Barby Ingle http://www.blogtalkradio.com/thebodymindandspiritnetwork/2012/10/29/living-with-hope

The episode is still availabe in the archives to either be listened to from Blog Talk Radio or by download. Barby also discusses several upcoming events for Nervember. Including a full day 6th Annual Arizona State Management Conference Webinar November 3rd, 2012.

For a really great blog, don’t forget to visit: Patient Awareness by the Power of Pain Foundation at www.PatientAwareness.org featuring writer and editor Chris Greulich. Still in it’s infancy, born only a few months back, you won’t want to miss this one. It’s growing by leaps and bounds. So much more pain and patient related information to come.

I can’t wait!

Patience Grasshopper…

Please support a loved one, friend, colleage, or even an acquaintance that you know who may be suffering from and attempting to survive this painful and debilitating neuro inflammatory auto immune disease. Even those you don’t know need your support.

We ask that you wear Orange as many times as possible throughout the month of November. Whether it be an awareness bracelet, clothing, anything. If you don’t have anything on hand, you can get into the spirit with us by making yourself an orange tag that say’s “I Support RSD/CRPS Awareness” or “I Hope for a Cure for RSD/CRPS”. Use your imagination, we’ll be thankful to you!

1000’s are getting together on November 5th, scattered throughout the world to wear orange in support of RSD/CRPS awareness day. The link to Rebecca Hale’s page is- https://www.facebook.com/events/251987344922784/

 

Don’t forget to tell everyone that you know to wear orange too and why. The more people you teach and who become educated in why we’re doing it can pass on what they’ve learned to the next person while wearing their orange and that person to the next..

and that person to the next..

If we all take part soon enough more and more people out there will become familiar with the words.. the letters..

R     S     D        C     R     P     S

 

Then we can rest easy and begin again.

What are you doing to this month in the name of RSD/CRPS awareness? Would love to hear from you!