Facebook Deactivation | RSD(S)-CRPS Advisory Info & Support Group

Posted by twinklev

By December 2nd my Facebook was deactivated. Even though I had considered it over the years, I was worried about losing my group and pages as a result, especially my RSD(S)-CRPS Advisory Info & Support Group created 13 years ago at another location. It was a spontaneous decision and one I have not regretted once.

This Group now belongs to Trudy Thomas featured Blog Talk Radio Host of The Body, Mind and Spirit Network and honorary leader of my group since it was moved to Facebook. If I choose to return it will be both Trudy’s and mine. Craig Fletcher remains an Admin/Leader and Erik and Kurtis VanFleet remain admins for the purpose of recovery. So that there are no misunderstandings Trudy is now me for the Group. Her decisions are as the current owner of the group. I have no doubts in her ability, choices, or decisions. I trust her to fulfill my vision, passion and purpose for which it was founded for.

Trudy is not available for drama, or he say’s she say’s. She would be available as able, as I was, in the event of an emergency situation such as specific breaking of the rules that were established long ago, or those being malicious or instigating toward one another. I may be involved from the background with updates from Trudy though I will not require them.

I’ll always want to know if all is okay. That’s because I care a bit too much and to my own detriment. Being an empath/sensitive only causes me to feel your pain, feelings, thoughts, dislikes, and emotions I rather not feel of you because then I’m over flowing with mine and yours, too.

Trudy is learning to live again and without her husband Mel of over 40 years. It’s only been a month since she lost him to inoperable cancer which had only been discovered 4 months before.

About 2 months ago I had posted on Facebook about Trudy, her situation, about someone we all knew (most of us) and it was a long post but I hadn’t shared who she was. This post was taken so far out of context from a few people believing I was talking about myself that I was dumbfounded. This wasn’t the only post misunderstood. I’ve posted random comments about family, life. I’ve shared meme’s, music, lyrics, poetry that of other’s and some of my own. I’ve shared lines or stanza’s in pieces and parts. Even those are taken adverse. I’m well aware that once it’s on the internet it’s always on the internet. I’m aware that if we make a post that we can’t expect others to comment if we put ourselves out there. Of course. I would never hop onto someone else’s page to scold them or entice an argument. I have however replied on my own page when someone bounces onto mine.

My point is that not everything is internet or online related, and sometimes things are. In this post it was online related, yet taken as something else, when an offline related post is assumed to be about online people. The perception is so often opposite of the intent. Left to interpretation by tone of type. The assumed tone of voice or mannerisms in the typed form of communication.

Please be mindful of Trudy’s loss. My heart continues to break for her.

Facebook is nothing but a trigger for me in my own healing and progress.

The Edge. There is no honest way to explain it because the only people who really know where it is are the ones who have gone over.
~Hunter S. Thompson

I’m still doing well since completing the Gohl Program on the 28th of October and will continue to provide progress updates on Manual Ligament Therapy (MLT) as able.

I’m still on Twitter @rsdcrpsfire and my other social media accounts are in tact at this time. I’m still an avid researcher and as hungry to learn as I’ve ever been. I’m also looking for work to attempt to provide for my husband and I.

Since resigning from iPain I have not joined any other organization, nor will I. I’ll share and support as I always had.

I made it to the California State Capital to support Mr. Nate Torgerson, Chief Engineer, Medtronic Stimulation Pain Therapies on December 4th at the California International Marathon where I was right there near the finish line to support him as he crossed it.

medtronic-nate-torgerson-crosses-the-finish-line-california-international-marathon-december-4-2016-photo-by-twinkle-vanfleet-jpg-large

Medtronic Chief Engineer, Pain Stimulation Therapies Nate Torgerson crosses the finish line at the California International Marathon in Sacramento. Photo credit: Twinkle VanFleet

I had the honor and privilege of meeting him later that evening for dinner.

Great conversation, sharing, learning, and food at Zocalo’s in downtown Sacramento. He asked me about my experience winning the Live On Give On Bakken award, and I told him what a surprise it had been to learn that I had and the honor it was to receive it from the hands of Dr. Earl Bakken himself. Dr. Bakken is the co founder of Medtronic. Forever grateful to be chosen as 1 of 12 recognized internationally and being 1 of 2 from the United States. Twinkle VanFleet, Sacramento California.

Twinkle VanFleet, Sacramento, CA, LiveOnGiveOn.org recipient. Original Press Release Photo.

Another honor was being contacted by Mr. Pat Anson of the Pain News Network to consider offering comment on an upcoming article. I accepted.

Opioid Pain Meds Rarely Involved in Suicide Attempts
December 05, 2016 By Pat Anson, Editor

I’ll keep sharing my story, what happened, how it happened, when it happened and anything else I can to support those lost by pain related suicide. As well as those survivors who can never go back to the moment before they attempted to take their own lives. I don’t get to go back and pray for an option, help, that wasn’t there but I can go forward understanding why they did it, what the breaking point was, how severe physical pain was to go against all they believed in just to be free from pain and suffering.

My casting calls are still booming with possibilities since I updated a couple of weeks ago. For now, I’m deciding, and brushing up on the various characters I can play.

Offline, I have an amazing reputation, respected in advocacy, legislation, held in wonderful regard by those that matter, including those in authority, business, politics, and healthcare even when in disagreement over a bill, debate or topic. Online, unless we already know each other, or have met in person it will rarely be the same because what you see isn’t always what you get and what you get isn’t what you’ve already given.

It’s all a stage.

Be good to one another.

~Twinkle VanFleet

#StrongerThanPain

Live On. Give On | 2015 Bakken Invitation Honoree | Pre-Review

Posted by twinklev

Week of January 11, 2016 (never shared)

As I get ready to fly to Kona, Hawaii for the Medtronic Bakken Awards, I’m trying to help myself overcome challenges related to traveling, weight bearing, pulmonary and sleep disorder issues. My breathing has been unstable this week, my head, neck, arms, and even female troubles have poked me in the side.

I had my appointment with my PMD yesterday to ask for considerations that might help me through as it’s becoming harder and harder to stay up on my own and maintain pain levels. I already put in for ADA assistance during the travel and at the hotel. Yet, I won’t allow myself to be confined to a wheelchair while there, so I’m carefully pacing myself so that my legs carry me. My Medtronic Spinal Cord Stimulator has been my pill for 10 years. I’ll be able to adjust for optimum relief, but to do so also means that I have to either not be on my legs/feet at that time or not raising my settings for added comfort. I learned a long time ago how to get the best out of it for me. I’ve also learned that there are times I have to trade relief for walking and I can’t always have both at the same time. I can set my stim to numb me, but because I am one of the lucky ones whose stimulation does reach the toes, increasing this setting can knock me off my legs. I reserve this for non weight bearing pain relief. This is not an adverse effect, but a plus and benefit that has to be noted and chosen to best fit my time and place.

My Auto Servo Ventilator is too big and quite heavy to carry, so I may have to go without it. Still working on that. Otherwise I’d be traveling with 2 medical devices and have little room for anything else.

At this time next week, we’ll have already landed and be apart of the meet and greet with each honoree, Medtronic and so many others. I’m looking forward to representing Power of Pain Foundation as the new International Pain Foundation, myself as honoree, each honoree for what they have also accomplished and given, advocacy, volunteering, my family, my closest friends, and Dr. Earl Bakken and Medtronic Philanthropy.

There are a few wonderful people and establishments I want to say thank you to for being apart of this with me.

The International Pain Foundation (IPF) #iPain – Previously known as the Power of Pain Foundation. http://powerofpain.org/

Sacramento Pain Clinic – Dr. Michael Levin – Since 2004. Not just a Pain Management Doctor, but a patient advocate going above and beyond his own job for his patients.)

http://www.sacpainclinic.com/sacpain.php

Jacob Chopourian, Therapy Representative, Pain Therapist, Medtronic Inc Neuromodulation, Sacramento, California. www.medtronic.com

(Jacob has been part of my surgical team. He’s also adjusted me as needed. When I had my 9 year battery replaced I donated back to Medtronic my carrying bag, handheld stim (my stim) case, charger, hip straps, antenna, and manuals so that someone who needed these items in whole or in part could have them. Jacob came to my home to pick it up. Amazing man.)

Katie Tamez, Clinical Specialist, Pain Therapy, Medtronic Inc
Neuromodulation. Sacramento, California. www.medtronic.com

(Katie has worked to fine tune me, too.) I’ve no longer needed the 3 programs I started with many years ago, sitting, walking, sleeping. I use a single program with pulse. Wonderful lady.)

Compass Center for Functional Restoration – (Dr. Michael Levin MD) Rick Wurster MSG, MPT, BCIAC http://www.sacpainclinic.com/compass.php

(The center that taught me all there is about pain, physically, emotionally and psychologically. How to live with it using the mind, spirit and body to overcome flareups and maintain a modicum of sanity. Because of them I’ve been able to teach others what they taught me and find some joy and laughter in pain.)

Western Dental – Elk Grove Florin Road, Elk Grove, California

Dr. Tooloei, Staff.

You did great. Thank you for trying before I left for Hawaii. Trying meant enough to me.

Trudy Thomas, Featured BlogTalkRadio Host of the Living with HOPE Radio show on the Body, Mind and Spirit Network.

http://www.blogtalkradio.com/thebodymindandspiritnetwork
So proud of you and all you’ve given, selflessly. Happy that we have each other and our friendship survives the things we can’t do anymore.
Honored to have been both your co-host and guest speaker and warmed that you will always be family. Thank you for being all that I can count on as honorific leader/admin of my group. I love you!

Roy, MD Junction – http://www.MDJunction.com (Honored to have lead your Reflex Sympathetic Dystrophy Support Group for years.

http://www.mdjunction.com/reflex-sympathetic-dystrophy

Glad to have lead the ADHD support group on behalf of the children and parents who needed someone to oversee it. Pleased to still be a Senior Member and
MDJ Advocate. Love you all!)

Barby Ingle, www.BarbyIngle.com
(Together we can! Together we will! And together we are! Through MDJ and Trudy we found each other. I’ll forever remember the ones who cherished me for cherishing them. All 3 of you! Onward I go with #iPain. I love you!)

My Mom and Dad(s) (I know my dad is watching over. Gone since I was 22. My mom and dad was married 25 years when I closed his eyes. My mom and dad have been married 20 years and dated prior to that. So Mr. Don Tresca has been my father just as long as my birth dad was. I pray I’ve honored them all evenly and fairly as their daughter. I love you!)

Erik, Kharisma, Rikki, Kurtis and De’Mantai (my 5 lights). (Awards and recognition is great but not if they are seemingly meaningless to those that it should have mattered most, too.
There’s so much I’ve advocated for on your behalf’s that you’ve never even seen. I know that it all gets stale at some point but if you only knew it was never more for someone else than it was for you. Seek and you shall find. love you! Ohana.)

I’m so glad Daddy saw, felt, and knows now. Sometimes it takes a miracle and that miracle came. It’s all good. Ask him ~winks

Annie-Marie Garcia (30 years! Time in between where we had gaps because life does that with work and loss. We don’t want to add burden to those we love or stomp on someone else’s, okay. That’s what we tell ourselves at least. I’m glad I got you now in the illness you should have never ended up with. I wish I was there when you were first going through it and if only I had known. Lets never let anything separate us again. For you and I, we have something special, we can see each other every day, or have weeks, months or years go by, but we always know that when it comes down to it, we are the ride or die. I love you!)

Maryann Kupidlowski Stafford (My sister since our babies were babies. Young teen daughters. If we weren’t there together we would have never met. Your curiosity, my extended learning, teaching. We both did, and we both gave, mine was just for extending natural order A decade? 12, 13. Time flies. Here we are moving forward in light, love and tomorrow. I love you!)

PK Saint-Amour (Bruja, pain, strength and the sight. Light and the “F’off. I so love you for being courageous in all of it. I’m so glad that you’re my sister in knowledge and fight. I love you!) https://www.facebook.com/groups/InvisibleWarriors/

Eileen McCready (A long time now too, background, foreground, compassion and understanding beyond pain. Sister of mine, always. I love you!)

Saskia Hubelmeijer (My international sister who does all she can in the Netherlands despite pain and hardship, and for America, too. Who’s assisted in leading my group since 2011, as formal admin and informal I love you!)

Billy Rose (Thank you brother for leading light and love above pain and hurt for all people. You demonstrate what the world needs more of and you are providing the change needed to overcome it all again) I love you!

The Council (We are who we are and one day when the earth is over, or death takes us, we’ll still be us, together, teaching, giving, inspiring, awakening those asleep all in their own time) I love you all. http://www.councilofenlightened.org/

The Sacramento News & Review (For featuring my voice and passion over 20 years ago) November 17, 1994, Speaking Out Edition) https://rsdadvisory.com/2015/07/24/sacramento-news-review-november-17-1994-speaking-out/

https://www.newsreview.com/sacramento/home

ECV Chapter 3 (Clampers/widders) E. Clampus Vitus was established in 1849.

http://ecv3.net/ http://www.ecvgazette.com/

(In memory of IRJR http://www.irjr.com/, a great man, friend, Clamper, who many years ago when founded Widders Web honored me with his chat program instead of the one I was using for us, I used his to then honor what he started years previous to that. http://www.irjr.com/widderschat/ While the pages are currently not found and the chat needs updating, I wanted to thank him again. Mr. IRJR is no longer with us.

SPPAN (State Pain Policy Advocacy Network) (I hope we continue on)

RSD(S)-CRPS Advisories

(Founded by me, for you)

—————

Refer to December 27, 2015

https://rsdadvisory.com/2015/12/23/twinkle-vanfleet-2015-honoree/

To be continued!…

The best is yet to come.

Twinkle VanFleet, 2015 Bakken Invitaton Honoree, Sacramento CA, #iPain, with Dr. Earl Bakken Medtronic Co-Founder, Kona Hawaii. Awards reception. January 16, 2016.

http://bakkeninvitation.medtronic.com/honorees-winners/

http://bakkeninvitation.medtronic.com/honorees-winners/2015/twinkle-van-fleet/index.htm

http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=1822170

http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=2122319

http://www.nasdaq.com/press-release/the-medtronic-bakken-invitation-award-honors-12-patients-from-around-the-world-for-giving-back-20151214-00566.

http://www.otcmarkets.com/stock/MDT/news

Living with HOPE Radio Show: Re-Airs Live- NERVEmber 19, 2015

Posted by twinklev

The Living with HOPE Radio Show with Host Trudy Thomas will re air live NERVEmber 19th, 2015 on the Body, Mind, and Spirit Network. Due to health reasons she took leave in January and has been working toward returning.

I’ll be re-joining Trudy as co-host each Thursday at 2:30 p.m PST/5:30 p.m EST with a 30 minute guest speaker, or to review, or to discuss current affairs. The chat room will be available for your combination of listening and chatting pleasure. The call in number for the show is (929) 477-3203.

Please stay on the line to listen live or press 1 to speak to the host.

Living With Hope: Guest Twinkle Van Fleet

Together, we’ll bring you a diverse array of treatment options, healing essentials, technology, inspiration, activities, and living with hope.

Since 2007, Trudy’s mission has been to promote awareness for the millions of people who struggle with chronic or intractable pain. To let people know that they are not alone in their journey and that there is life after diagnosis. Trudy discusses various therapies and the emotional struggles that can arise with a chronic incurable condition such as RSD/CRPS and coming out on the other side. She strives to empower, inform and educate.

If you have a topic of interest or would like to request guest consideration and have any questions, Please, contact Trudy at: goldfield_nv@hotmail.com

With “Topic of interest” in the subject line to propose a topic. “Guest speaker” to be considered as a guest and “Question” to ask your question. Please provide your proposal or question for either. This helps filter email and requests to better serve you.

Hope to see you there!

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

Posted by twinklev

Living with HOPE began in 2007 under its original title Living with RSD. It was Trudy Thomas’ 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. Bringing both traditional Western Medical Practices and Complementary and Alternative Medicine (CAM) practitioners with expertise in prevention to cutting edge technology.

Trudy Thomas is returning to radio!

Stay tuned!

Trudy empowered, informed and educated her listeners with information that wasn’t always readily available in a patient’s local area. Through the power of the internet she had the ability to bring you some of the most knowledgeable physicians, researchers, and advocates in the world.

Guests/Interviewee’s have included: Physicians, Counselors, Spiritual Healers, Psychologists, Pain Management Specialists, Alternative and Homeopathic Healer’s, Energy Healer’s, Medical Authors, Biographers, Researchers, Reiki Master’s, Herbalists, Chinese Medicine Practitioners, Clinical Trial Physicians, Patients, Patient Authors, many more.

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

Trudy broadcasted live from PAINWeek 2013, September 5th and 6th. Hosting the Featured Living with HOPE Radio Show with Co Host Barby Ingle of the Power of Pain Foundation. Together they interviewed 4 doctors each day with varying backgrounds in pain and treatments.

Trudy’s network was the original hot spot for the Burning for a Cure show with Barby Ingle.

Trudy was the Nevada Ambassador for the Power of Pain Foundation until 2014.

She is the 2012 recipient of the Melanie McDowell Chronic Pain Awareness and Advocacy Award.
http://powerofpain.org/mcdowell-advocacy-award/

Trudy’s live shows ceased approximately 9 months ago. The archives are available for you.

Her Living with HOPE Show on the Body, Mind and Spirit Network became a featured Blog Talk Radio Broadcast in February of 2013 and retains that featured status today. Her flavorful interviews, upbeat personality, and casual atmosphere gave us a mixture of guest education, information and awareness, co hosting fun, thousands of listeners and our body, mind and spirits were left fulfilled with either something learned, something gained or something to look forward to. Hope.

Living with Hope
Body, Mind and Spirit Network

http://www.blogtalkradio.com/thebodymindandspiritnetwork

Living with Hope
Search Results- Google

https://www.google.com/#q=living+with+hope+blogtalkradio

Living with RSD
Search Results- Google

https://www.google.com/#q=living+with+rsd+blogtalkradio

Living with Hope was originally known as Living with RSD

Trudy can be contacted at: goldfield_nv@hotmail.com.

Broadcasting Live From PAINWeek 2013 Living With HOPE

Posted by twinklev

Broadcasting live from PAINWeek 2013 Host Trudy Thomas of the Featured Living with HOPE Radio Show will be on the air with Co Host Barby Ingle of the Power of Pain Foundation and together they will be interviewing 4 doctors a day with varying backgrounds in pain and treatments that they each have to offer. Each doctor will get 15 mins of air time.

Trudy and Barby will be doing a 1 hour broadcast live from PAINWeek on Sept. 5^th and 6^th.

Be sure to stop by the chat room or phone in to listen and find out which doctors will be featured.

http://www.blogtalkradio.com/thebodymindandspiritnetwork

Call in to speak with the host and guest speakers (347) 884-9691

Are you living with a chronic illness? Chronic Pain?

Depression? You are not alone. Join us to meet some amazing guests who have walked the same path and come out on the other side.

This show delivers hope, practical advice, ways to find your own path and would like to hear from you about your journey.

A Review with Photos of Convoy of Hope Sept 15, 2012

Posted by twinklev

Having represented the Power of Pain Foundation as California Ambassador at the Convoy of Hope held at Cal Expo September 15th, 2012 in Sacramento California I’d like to thank the Power of Pain Foundation (POPF), Barby Ingle, Ken Taylor, POPF Board of Directors, Trudy Thomas, Chris Greulich, Convoy of Hope, Susan Gosselin, Jackie Jurek Miss Folsom Cali USA, Kurtis VanFleet POPF Jr. Ambassador and Volunteers of the day Erik, Kharisma and Erykah VanFleet for all their hard work and commitment.

I was and still am thrilled to have been able to promote awareness, distribute information, and answer questions related to Reflex Sympathetic Dystrophy Syndrome, Complex Regional Pain Syndrome/Causalgia and other neuropathic conditions. I also did a balloon release in the name of the Power of Pain Foundation, RSD/CRPS/Causalgia/Neuro Inflammatory Disease, Cure and Hope!

Cure is barely heard on the video as someone was hugging me at the time, but all other words are heard clearly even though I stuttered some. I’m putting together a slide show video of the event and hope to have it ready this month. It will consist of more photos an information of the event not just of the Power of Pain Foundation but of the entire day. All photos were taken by POPF Jr. Ambassador Kurtis VanFleet. A video of the balloon release will also be uploaded soon.

It was such a wonderful day, so many people were given free groceries, clothing, shoes, vision, dental and medical screenings, hair cuts, portraits, breakfast, lunch and so much more. This years turn out of a bit over 5,000 attendees was much lower than the previous years. The economy hurt this event from being even greater. Not enough donations to the Convoy of Hope, people couldn’t afford gas or public transportation to get there. People come from areas outside of Sacramento and weren’t able to this year.

People were camped out the night before the event to get in early, so gates were opened early, but also closed an hour early to accommodate for timing.

Total Guest Attendance- 5,832

Total Family Portraits- 955

Total Guests Prayed with- 4,698

Total Haircuts- 1,000

Total Women Served- (NBCF Tent)- 678

Total Shoes- 800+

Total Participating Organizations- 30

Total Volunteers- 1,763

1,400 Guests Served in the Clothing Tent

95 Dental Exams

50 Vision Exams

300 Received $500 Gift Certificates for follow-Up Vision Care

24 Pregnancy Exams

400 Served in the Job Tent

All these services were Free!

In addition thousands of pounds of food, water, and juice was distributed.

Medical, dental and vision supplies are costly.

Power of Pain foundation Table at Convoy of Hope

Jackie Jurek Miss Folsom Cali USA and Power and Pain CA Ambassador Twinkle VanFleet

Yesterday we received a Thank You Card from the Convoy of Hope. While the card was sent to me it very much belongs to the Power of Pain Foundation as a whole.

It is a shame that our economy is in such bad shape that even a good thing, an all free collaborative event was cut in half by those who were able to attend when we know the 1000’s who couldn’t be there needed the free groceries, medical exams and freebies that were offered and given away.

I pray for all those faces I seen. Those I spoke to and those I didn’t.

Let us all pray… for one another..

and let us TURN PAIN TO POWER… (powerofpain.org)

The POPF and the Living with HOPE Radio Show

Posted by twinklev

Great news!

The Power of Pain Foundation (POPF) and Barby Ingle are now sponsoring the Living with HOPE Radio Show with your Host Trudy Thomas.

Trudy’s goal is to promote awareness for the millions of people who struggle with chronic pain daily. To let people know they are not alone in their struggle and that there is life after diagnosis. Trudy discusses various therapies and the emotional turmoil of having a chronic incurable condition such as
RSD/CRPS and coming out on the other side.

People often times wonder where the money goes that they donate to an organization or foundation.

The Power of Pain Foundation is a 501(C)(3) non profit charity. All donations are tax deductible.

We’re passionately promoting the Power of Pain Foundation so they can continue to serve patients and caregivers dealing with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome, Post Cancer Pain, Diabetic Neuropathy and other painful neuropathic conditions. Our fundraising page exists in an effort to help serve their the cause.

Beneficiaries include patients who are economically and socially affected by these invisible diseases. The POPF will help you face the challenges and life changes of chronic nerve pain, head on.

Donations are also used to serve the public in order to promote RSD/CRPS, Neuropathic and Chronic Pain awareness via Radio and other media. The sponsorship of the Living with HOPE radio show will serve that purpose.

~Twinkle V.