My Month in Review- September 2015

It’s been a busy month. High energy, highs and lows, mixed emotions and uncertainty amidst certainty. Our daughter’s care went from zero in 2 years to blast off in a matter of 5 days. We made the drive to the Stanford University Medical Center Transplant Clinic in Palo Alto, California. Our son, Ozra (Kurtis) picked Kharisma and I up at 5:00 a.m Thursday morning, September 24, 2015. We were 10 minutes late for the 9:00 a.m appointment. Map Quest- between 2 hours and 12 minutes and 2 hours and 41 minutes away depending on traffic. Between 122 miles and 125 miles each way. It took us nearly 4 hours due to traffic into the Bay Area. We return in 3 weeks and now we know we have to depart 5 hours in advance to reach our destination on time. We tried to take an alternate route on the way to bypass toll fee’s, but hit them anyway. We knew we would anyway coming home. I’m not certain yet if there is another alternate route to bypass fee’s, if there is and we chose it, we would have more time on the road. I’m thinking fuel would take up the same cost as fee’s if we could find one, though I’m not sure yet. Our 18-year-old son paid fuel and fee’s for his sister.

Brother and sister, Kurtis (Ozra) and Kharisma VanFleet at Stanford. September 24, 2015. Ohana.

Brother and sister, Kurtis (Ozra) and Kharisma VanFleet at Stanford. September 24, 2015

Our van won’t make these trips. Our son took time off work to get his sister there and will be doing the same for the next trip. I’m blessed that my children are right there for each other. We learned that our daughter could end up with anything from a partial liver transplant, to the full transplant which was previously discussed due to the location, number of and sizes of tumors. Ablation could be an option in the meantime to slow down the progression of growth while on wait list. At this time her Hepatologist has put together a team of experts to review findings on previous scans and decide which will be the best MRI to do next for comparison since some of the prior’s were off due to type of contrast used.

I’m finally confident she’s in good hands and that we will have definitive answers and confirmations soon regarding her diagnosis and exactly what the plan will be.

On our way to Stanford (Palo Alto), California Photo taken by Kurtis Ozie (Ozra) VanFleet Sept 24, 2015

On our way to Stanford (Palo Alto), California Photo taken by Kurtis Ozie (Ozra) VanFleet Sept 24, 2015


I’m truly honored to have been chosen this month as a 2015 Bakken Award Honoree. Live on, give on.

More to come.


My largest ovarian cyst ruptured last month. My issues there are still ongoing. I had the Nexplanon removed from my left arm Wednesday afternoon (September 23, 2015). I wasn’t using it for birth control (I don’t have to worry about that) but rather to thin the thickening of my uterus, and attempt to ease the dysmenorrhea and menorrhagia. It actually did well for a bit over a year. It stopped the periods for nearly all that time. Until February when I started and have barely stopped since. In addition, a month before that began as an ongoing issue, the bleeding from my other area worsened which led to the Colonoscopy, a polyp being removed during the procedure, the diagnosis of Diverticulosis(itis) when flaring, and a corrective surgery being set up. I’ve postponed that. Once the girl part started like this the Nexplanon really had to come out as it shouldn’t be in while experiencing such symptoms or side effects. Nexplanon Risks and Side Effects.

I’m hoping that the removal assists now to relieve what’s going on. My legs really can’t take all the back and forth to the bathroom, accidents and the mess that comes from bleeding from both places. It really can cause one to become cranky when trying to take care of so many other things at the same time. It kills my leg time for everything else and is most wearing. Contributing to the sleep disorders I already have. Yep, my energy has a leak in it.

My doctor removed it great. No extra surgery needed. Took maybe 15 minutes or so. A little tugging to get it all out. “Nexplanon® is a small tube 40 mm long and 2 mm wide (about the size of a hair grip).” Last night was the sorest so far. Kind of like someone pinching you really hard in the side of your inner arm. Right now, I’m sure it’s healing since the muscle is aching deep, it stings and itches. About a half an inch incision I think. Still can’t it see fully.


I enjoyed writing about the 7 features for Pain Awareness Month 2015 and am thankful for each of you.


A lot more is happening this month. It’s been coming. Some of you can feel it, some of you have awakened and some of you are awakening. Some of you have no idea what it’s all about. It’s already been taking place. September 27th and 28th brings the shift in awareness.

The Intense Effect of the September Energies – Symptoms we all experience now!!

https://edithboyertelmer.wordpress.com/2015/09/18/the-intense-effect-of-the-september-energies-symptoms-we-all-experience-now/

GLOBAL MASS ASCENSION, SEPTEMBER 28, 2015, AS WAVE-X BOMBARDS THE EARTH!

http://zonnews.com/news/654-global-mass-ascension-september-28-2015-as-wave-x-bombards-the-earth.html

September Supermoon Eclipse—Redefining Relationships.

http://www.elephantjournal.com/2015/09/september-supermoon-eclipse-redefining-relationships/


Sometimes I talk about various subjects, babble on, use phrases, words, without stating the entire meaning and people are like, huh? That one must be nuts! Nope, I like to see if you might know, too.

Here it is my friends, I hope you understand a little more now.

Have you wondered why the skies have been so beautiful lately? Or…

On our way to Stanford. Bay Area September 24, 2015 Photo taken by Kurtis VanFleet (Ozra)

On our way to Stanford. Bay Area September 24, 2015 Photo taken by Kurtis VanFleet (Ozra)

If you don’t know, you’re own research will bring you to your own enlightenment until you can feel it for yourself.

With love and light..

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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

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

HopeDawn R. Scott was only 20 years old in 1998 and a junior in college when she was first diagnosed with Epithelioid Hemangioendothelioma (EHE). The primary site of her EHE was in her right subclavian vein which had metastasized to her lungs. She had about 20 tumors bilaterally. Dawn’s primary surgery was extensive, enduring four rounds of rough and intense chemotherapy. The primary tumor was completely removed via surgery and the lung tumors have been stable since August of 1998. Dawn received her undergrad in 2001 and went on to law school. She graduated again in 2005 and has been practicing law in Wyoming for the last 10 years.

In April of 2013, she met a young woman named Tory who had angiosarcoma. Tory was the first person Dawn met in person that had anything similar to EHE. Tory invited Dawn to join an angiosarcoma group on Facebook. The group joined people from all over the world. An eye-opening experience. During the summer of 2013, Dawn connected with Vlad in a chat forum, his brother, Dmitri, had just been diagnosed with EHE. They talked on the phone and in turn, his mom Jane was introduced to her. Tory passed away in September of that same year and from there Dawn was compelled to start a Facebook group for epithelioid hemangioendothelioma.

“Never did I dream that we would grow to be what we have become and I am so happy that we have one another.” ~Dawn Scott

Jane joined Dawn shortly after she started the group, and gradually they gained key members such as Guy Weinberg (CRAVAT) and Gayla Loller. Cynthia Lee, who had started the HEARD registry years ago before was soon on board, too. Halt EHE thru Analysis, Research and Discovery (H.E.A.R.D.). Jane alerted the group to Dr. Rubin’s work, field of research, study and fundraising for EHE.

Brian Rubin, MD, PhD, is certified by the American Board of Pathology in anatomic pathology. He specializes in the diagnosis of diseases of bone and soft tissue and is an expert in the diagnosis of sarcomas. He’s a world-renowned pathologist and medical researcher who’s brought new hope for patients diagnosed with Epithelioid Hemangioendothelioma (EHE). Dr. Rubin is at the Cleveland Clinic.

“I may have “created” the group but it is truly all of ours and we’d be nowhere without the dedication of so very many.” ~Dawn Scott


Epithelioid Hemangioendothelioma (EHE) Cancer Support Group
https://www.facebook.com/groups/EHEcancer/

This group is for epithelioid hemangioendothelioma (EHE) cancer fighters/survivors, caregivers, friends, and medical professionals. Per Wikipedia, epithelioid hemangioendothelioma (EHE or eHAE) is a rare tumor that typically strikes both women and men who are in their 20s through their 40s. EHE is a vascular cancer, often growing in the liver, lungs, and within the veins of arms and legs. However, it can be found in other locations throughout the body, including the mediastinal region of the chest, in skin and other organs, and also in bones. The prognosis varies for those diagnosed, with many living successfully with the disease while others do not survive.

What is universal is that EHE fighters/survivors are scattered across the globe, and often never have the opportunity to connect with someone else who is fighting the same disease. This group hopes to change that! We want to be a source of support for those fighting the disease as well as those who love them. We also want to raise awareness of this rare form of cancer and advocate for a cure while being a source of knowledge and resources. You do not have to fight this battle alone, we all fight together!

This FB group reflects numerous positive steps that are being made in the awareness, identification, and treatment of EHE. Please check out the links at the top of the page for additional information such as the status of research breakthroughs made by Dr. Brian Rubin at Cleveland Clinic; fundamental information about EHE from CRAVAT (Center for Research and Analysis of VAscular Tumors) Foundation; and of course, PLEASE take a moment to register your information at our new EHE patient registry.

NEWLY DIAGNOSED? Please click on this link: http://www.cravatfoundation.org/newly-diagnosed/ to find key information that will be helpful. Our members bring diverse experiences and information to this group. Please remember that postings on this site are NOT MEDICAL ADVICE and should not be taken as such! Your doctor or doctors should always be the final authority on your treatment measures, supplements, etc. However, we encourage you to educate yourself about this disease, possible treatments and to ask questions in order to have open and honest conversations with your doctors.

Description written by and is the property of Epithelioid Hemangioendothelioma (EHE) Cancer Support Group.

Leadership Team
Dawn R. Scott, Jane Gutkovitch, Gayla Loller, Guy Weinberg, Cynthia Lee, and Jono Granek.

(Closed Group)


Epithelioid hemangioendothelioma is a rare and devastating vascular sarcoma that affects between 100 and 200 people, mostly young adults, each year in the United States. The cancer may arise as a solitary lesion but more commonly presents with metastatic involvement, usually in the liver and lungs. When confined to soft tissue, mortality from epithelioid hemangioendothelioma is between 13% and 18% but increases dramatically to 40% and 65% when it is found in the lungs and livers, respectively. Although localized epithelioid hemangioendothelioma can be surgically resected, currently there is no effective therapy for systemic disease. And because the cancer is so rare, public funding for research is scarce, making the development of targeted therapies difficult.

Citation: Unraveling the Mysteries of Epithelioid Hemangioendothelioma
A Conversation With Brian P. Rubin, MD, PhD By Jo Cavallo, February 10, 2015, Volume 6, Issue 2

See full article below


As some of you may know by now, Kharisma’s Journey hasn’t been a simple one. Since my post February 4, 2015, so much more has been revealed by my own discovery. Through my daughter’s medical records, I learned it’s not just her liver that’s affected, she also has a lesion on her kidney, an accessory spleen (Splenule) and other abnormalities. I highlighted these findings for her appointment less than a month ago. She’s not received any care the last 7 months, we’ve tried, but to no avail. At this last appointment she was put out of work for a minimum of 3 months. This was an emergency appointment scheduled with her primary after her dad took her to the ED for severe pain and she was dismissed without care. 2 weeks later, she finally seen a Gastroenterologist specializing in the liver, and was immediately scheduled for an Endoscopy 2 days later. Yesterday, we got word that Standford Medical Center in San Francisco received an urgent request from our daughters new doctor. They called to schedule an appointment for next Thursday, September 24, 2015 to begin the process for a liver transplant. It’s a consultation visit to get her on the National Transplant Waiting List. I’ve already looked into being a living donor for her. I had part of my own liver removed in July of 2013. Hepatic Hemangioma with small portions of attached benign hepatic parenchyma. Several benign masses that were only discovered as a result of a second Gall bladder surgery. Hemangioma is made up of a tangle of blood vessels. The liver is the only organ in the body that is able to regenerate and a removed or transplanted portion of a liver can rebuild itself to normal capacity within weeks. I could still give a part of mine. It shouldn’t be removed or given more than twice, but she’s my daughter, and there’s not anything I wouldn’t do to give her life again.

In August, I began researching almost endlessly on EHE. Case reports, abstracts, research articles, definitions. In February, I did it all over again. Someone responded to my blog post to refer me to:

Epithelioid Hemangioendothelioma (EHE) Cancer Support Group, so thankful for the reply to share with me its existence.

I sent a request and Jane accepted me in. I was welcomed with open arms. A most loving community. I began talking with Dawn a few months back. Getting to know one another a little at a time. An amazing lady and a courageous friend. I needed these people to know that I wasn’t there to promo anything, so many people jump into groups to do just that. My hope was to learn and I have.  While I do stay in the background more than anything else, I’m truly grateful for each and every one of them.

From what we understand resection isn’t possible for our daughter due the number of lesions, size and location of each. But if it is…


EHE Research – Dr. Brian Rubin
General Fundraising

http://giving.ccf.org/site/TR?px=2538406&fr_id=1360&pg=personal#.VfB_FxFVhBd


Unraveling the Mysteries of Epithelioid Hemangioendothelioma
A Conversation With Brian P. Rubin, MD, PhD
By Jo Cavallo
February 10, 2015, Volume 6, Issue 2

http://www.ascopost.com/issues/february-10,-2015/unraveling-the-mysteries-of-epithelioid-hemangioendothelioma.aspx


Research Gives New Hope To Those With Rare Vascular Cancer August 31, 2011

http://my.clevelandclinic.org/about-cleveland-clinic/newsroom/releases-videos-newsletters/2011-8-31-research-gives-new-hope-to-those-with-rare-vascular-cancer


Patient Crossroads

CRAVAT (Center for Research and Analysis for Vascular Tumors)

https://connect.patientcrossroads.org/?org=cravat

If you are an EHE patient and will be undergoing surgery in the near future, please contact the office of Dr. Brian Rubin, Anatomic Pathology Department of the Cleveland Clinic at 216-445-5551 to see about contributing your tumor specimen to his important research. Thank you.


CRAVAT Foundation
EHE Epithelioid Hemangioendothelioma
Education and Resources for EHE Patients, Their Families, and Doctors

For Newly Diagnosed

http://www.cravatfoundation.org/newly-diagnosed/


More information

Case Report
http://www.amepc.org/tgc/article/view/1119/1455

Radiopaedia
http://radiopaedia.org/articles/hepatic-epithelioid-hemangioendothelioma-1

Overview
http://www.oncologyreviews.org/article/view/259

Wiki
https://en.wikipedia.org/wiki/Epithelioid_hemangioendothelioma


By sharing the resources on this page, you’re gifting new hope back in hopelessness.

Thank you.

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

Sheila Purcell

 

Sheila Purcell isn’t your average pain patient. She’s actively involved in reforming laws and regulations that directly impact’s the quality of life of those suffering from chronic, long term, intractable pain. Sheila endures pain everyday herself, the life threatening seizures leave her worn, yet she’s a fighter, a strong one.

As an advocate and spokesperson supporting medication management options, including opioid analgesics, she stresses how important that it is that these prescription pain relievers should not be withheld as an initial treatment plan or be removed from the course of treatment for patients who are already using them.

Sheila recognizes that controlled substances are needed to treat certain conditions and that removing them as options for treatment causes hardships that are sometimes irreversible. She’s dealt with denials, delays and dismissal’s herself and knows first hand the demise of quality of life. There is more risk in under treated pain and the direct or unintended consequences than there is in the stable regimen of prescribed pain management.

 

 

Sheila was featured on The Pain Nation show with Ken McKim – Episode 1

http://youtu.be/625fZH9xn6c?a

 

 

She’s the Founder of the United Kentucky Pain Care Action Network (UKPCAN) (Closed Group)
https://www.facebook.com/groups/FFPCANkentucky/

United Pain Care Action Network of Kentucky and Tennessee (Community)

https://m.facebook.com/profile.php?id=628656307243460

The mission:

“Kentucky Pain Care Action Network” is a network of people living with Chronic Intractable Pain, their caregivers and others who share the belief that people suffering with Chronic Pain, Cancer, Mental Illness or any other disease have the right to timely, appropriate and effective Pain Care Management and Medical Treatment.

“Kentucky has a major problem that needs to be addressed and we want to help change the negative stigma around to positive for those in pain.”

We educate people and teach them that suffering from pain is not acceptable!

We do this though active advocacy, education, letter writing campaigns to State and Local Representatives and Senators. E-mails, faxes, telephone calls to our elected officials. We comment on “our” elected officials Facebook pages, we write letters to the Editor of our newspapers, we comment on articles posted in the group. We take action and by doing so, we make our efforts known.

Therefore it is very important that each group member take an active role in these actions. It only takes a few minutes a day to make a comment or write a letter. Many members set aside 30 minutes of one day to do this. WE MUST DO THIS TO MAKE OUR CAUSE KNOWN!

We are a Open Group. All info in this group is private and CANNOT be used for any purpose other than what each member give’s permission for us to use it for. This includes your Name, City, and County in which you live Medical Conditions, and any treatments you are receiving or have received.

The more people that are involved the quicker we can make progress on bringing it to the attention of Kentucky’s law makers and make them understand that HB- 1 & HB- 217 needs to be re- written to protect the THOUSANDS OF PEOPLE SUFFERING as a result of these bills

They also need to be aware that this has hurt “TOURISM” and will continue to do so as NO one wants to vacation in a state were Medical Care is NOT something they would receive if they or a family member becomes ill or has an accident of any kind requiring, surgery or pain care.

Let’s get busy fellow Kentuckians and show the lawmakers we will not rest until HB-1 and HB-217 are repealed!

“Kentucky Pain Care Action Network”

 

Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill”

https://www.facebook.com/Opposition-to-Kentucky-HB-1-Reform-HB-217-aka-Pill-Mill-Bill-595049517218134/timeline/

Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill” (Community)
https://m.facebook.com/profile.php?id=595049517218134

Chronic pain patients that are trying to get Pill Mill Bill’s reformed ln EVERY STATE not just Kentucky! Please join the fight and cause. Thank you!

This page is dedicated to raising awareness for chronic pain patients, children with attention deficit disorder (ADD/ADHD), Cancer patients, HIV/AIDS patients, patients suffering from certain mental disorders, patients requiring Testosterone, and their families affected by the changing environment of the medical community whereby those in need of controlled substances are refused treatment or made to endure many hardships, unnecessary for their care, as a direct result of laws enacted by the state of Kentucky.

Through any peaceful means necessary, we seek to contact State and Community leaders, The American Medical Association, Pharmaceutical Vendors, the DEA, the FDA and local/national media sources.

 

Mission and information statements by Sheila Purcell.


 

Sheila is a Delegate for the Power of Pain Foundation, active in various groups and organizations throughout the States, and she continues to work on much-needed change for the thousands of people suffering from pain and the inadequate treatments they are receiving.

If you need a voice for Kentucky and Tennessee pain care rights, Sheila isn’t shy. Her vast knowledge is your benefit. Her leadership is your tool.  The information she provides is your education. Her strength is your willingness to take part in your own health challenges and I hope all of you get the proper and timely care you need to survive.

 

 
Sheila can be contacted at: sheliakim1251@gmail.com

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

Melanie.32The Power of Pain Foundation began November 26 of 2006 in memory of Melanie McDowell who passed away that same year and in honor of Barby Ingle. Both ladies suffered from intractable pain. Melanie was diagnosed with Reflex Sympathetic Dystrophy in 1994 as result of Gallbladder surgery. She passed away in July 2006. One month after this photo was taken.

 

Barby being an Endometriosis survivor, developed Reflex Sympathetic Dystrophy in 2002 after a car accident.

Melanie was an RSD patient and advocate from 1994 until 2006 when the family lost her. It was her biggest hope that other patients would receive timely and proper access to care. She was involved in various RSD awareness projects to promote better outcomes for those with RSD and other chronic pain conditions. The Power of Pain Foundation carries on Melanie’s passion and the work that she did by recognizing the efforts of others and the work that they do.

Melanie McDowell Chronic Pain Awareness and Advocacy Award
http://powerofpain.org/mcdowell-advocacy-award/

 

 

Past recipients include:

2014 – Dominick Spatafora
2013 – Paula Abdul
2012 – Trudy Thomas
2011 – Barby Ingle
2010 – Mary French, RN
2009 – Mackenzie Bearup
2008 – Dale Lehn
2007 -In memory of Melanie McDowell

 

Jim IngleIn March of 2007 the Power of Pain Foundation was awarded it’s 501 (C) (3) non-profit status. A family led organization from 2006 to 2010 when they expanded to include others. Mr. Jim Ingle was an active board member until December of 2014 when he went into worsening kidney failure. While I was never a board member with Mr. Ingle, I recall fondly attending meetings as California Ambassador in his presence. This gave me the opportunity to meet him, hear him speak and learn what POPF means to him. Mr. Ingle is currently fighting for his life due to restrictions on transplants. My heart goes out to him and his family.

The face of Power of Pain began with the spunky, motivated, courageous, light-hearted, cheerleader for life Barby Ingle, who with the support of her husband Ken. pushed past pain to achieve the mission the family started off with. Comic Pain Relief and the National P.A.I.N. Summit continues to be major yearly events. Bringing both laughter and education to pain patients, caregivers, extended families, and those interested in the topics and treatments offered. Bringing you members of the healthcare community and top influencers to bring you a variety of non invasive modalities, options, access solutions, medication management, cutting edge research, panels and celebrity guest speakers. Comic Pain Relief will leave your endorphin’s fulfilled and your pain eased while you enjoy, laugh, and celebrate.

Barby has used her experiences, education, and extended self-education to become a motivational speaker, best-selling author, advocate, and face of pain to do live radio, television, author articles, appear in public all over the States to help influence positive change for pain patients everywhere. Our first face of pain for Reflex Sympathetic Dystrophy to make it into major media and give notoriety to an illness many of us strive to survive everyday. Giving hope to other’s who are still stuck in the diagnosis phase of their journey, and offering opportunities to others to help support Power of Pain Foundation’s mission.

BarbyIngle-FillYourPrescriptionOfHope

The Power of Pain Foundation’s (POPF) mission is to educate and support chronic pain patients, specifically those with neuropathy pain conditions. The POPF provides community based services that address needs of chronic pain patients with neuropathy conditions such as RSD/CRPS, post cancer pain, fibromyalgia, diabetic neuropathy, lyme, lupus, multiple sclerosis, arachnoiditis, dystonia, colitis, endometriosis, and more. We fulfill our mission by:

Promoting public and professional awareness of Neuropathy chronic pain conditions.
Educating those afflicted with the painful neuro diseases, their families, friends and healthcare providers on the disabling pain it causes.
Provide action-oriented public education and pain policy improvement through activities and efforts to eliminate the under treatment of chronic pain and increase proper access to care.

Advocating for not only RSD, but dozens of significant pain diseases and syndromes, the Power of Pain Foundation is leading the way for pain patients to share their stories and take part in amazing opportunities.

Music Moves Awareness Casting
Music Moves Awareness: seeks 15-20 chronic pain patients with different background, conditions, ages, symptoms, treatments, to appear in music video, featurette, and media interviews, representing their personal pain journey.

4SisterProductionz is currently casting pain patients for 1-3 day on set filming in Los Angeles to take place in early 2016.

If you are interested in being considered for one of these spots please send us a recent snapshot photos (non professional photos preferred) featuring your look as well as completed form.

Due to the volume of applicants we will not be responding to each and every submission. Chosen applicants will be contacted to move forward in the process over the next few months.

http://www.jotform.us/powerofpain/casting

 

“Where words leave off, music begins.”
~ Heinrich Heine

A few 2015 Highlights

OIC (Opioid Induced Constipation)
Speaking engagements, panels, and media.

CA AB 623 Abuse-deterrent opioid analgesic drug products
Power of Pain Foundation Co Sponsor Bill with Assemblyman Jim Wood

Abuse Deterrent Formulations
Bring Down the Hammer
http://www.jotform.us/powerofpain/adf

Power of Pain: Changes in Family Dynamics
September 01, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/9/1/power-of-pain-changes-in-family-dynamics

Power of Pain: Check Your Medical Bills for Errors
August 20, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/8/20/power-of-pain-check-your-medical-bills

Power of Pain: Tools for Today and Tomorrow
August 04, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/7/31/power-of-pain-tools-for-today-and-tomorrow

Power of Pain: The Benefits of a Positive Attitude
June 25, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/6/24/benefits-of-a-positive-attitude

Power of Pain: Take Charge of Your Pain Care
June 15, 2015
By Barby Ingle, Columnist
http://www.painnewsnetwork.org/stories/2015/6/14/decide-your-own-health-outcomes

Power of Pain: There is Great Reason for Hope
June 02, 2015
http://www.painnewsnetwork.org/stories/2015/6/1/there-is-great-reason-for-hope

Barby’s blog

http://barbyingle.com/blog/

Testimonials

http://barbyingle.com/comments/

Awards and Honors

http://barbyingle.com/awards-and-honors/

Media/Presentations

http://barbyingle.com/media/

Barby’s books

http://barbyingle.com/books/

 

More at: www.BarbyIngle.com

 
www.burningpain.org
Portal to:

RSD CRPS .ORG
RSD Quilts are dedicated to ALL patients and loved ones everywhere who worked to spread awareness or to raise money for RSD.

COMIC PAIN RELIEF .COM
If you haven’t had a good laugh lately, then you should check out this night laughs. COMIC PAIN RELIEF is a charity benefit show
hosted by the Power of Pain Foundation (POPF), a 501-C-3 charity.

NERVEmber .COM
Join us in raising awareness of RSD, Diabetes and all nerve pain conditions. In an effort to increase access to care, patient and
caregiver education, proper treatment option availability, and support for pain patients we are hosting events through the month of
NERVEmber and all year long!

PATIENT AWARENESS .ORG
The Power of Pain Foundation is happy to support and sponsor pain care legislation on a state and national level. Easy Things You
Can Do To Take Action 1) Write Letters to your legislators 2) Call your legislators 3) Spread the word through social media for
others to do the same.

BARBY INGLE .COM
Author Barby Ingle shares her powerful story about how life-changing events force reflection and sprouts new beginnings. Barby
Ingle is a Chronic Pain Educator for the Power of Pain Foundation, as well as a motivational speaker and patient advocate.

POWER OF PAIN .ORG
Power of Pain Foundation (POPF) provides community based support services that address needs of chronic pain patients with
Neuropathy conditions such as RSD/CRPS, Post Cancer Pain, Fibromyalgia, Diabetic Neuropathy, and many more.

There’s so much more to come.

With Motivation for a Cure…  We are Turning Pain to Power.

www.powerofpain.org

September PAM POPF

Aftermath of Tragedy- God Bless the USA !

Aftermath of Tragedy

God Bless the USA !

by Twinkle Wood-VanFleet

wemustneverforget

Headlines read

“America under attack”

My body began to shiver,

The World Trade Center One was on fire

My heart began to pound,

Why, oh why..this cold malicious act.

Please God, help the People,

Another plane heading for Tower Two

Oh, I Prayed.. Lord catch Them..

They’re heading straight for You.

Tears streamed down my cheek..

Our People scattered around,

Praying for New York City

Thousands never to be found.

Let Our Country show No mercy

Terrorism is not the way…

An ultimate price shall be paid

Soon comes judgement day.

In the aftermath of tragedy

Hoping pain eases in the hearts

Of the Families left behind

If not today or tomorrow…

Then somewhere in time.

Yes, I’m still proud to be an American

Even evil couldn’t take that away

I’m as free as Our People they killed

God Bless, the USA!

© 2001-2015 Twinkle Wood-Vanfleet Golden Rainbow Poetry All rights reserved.

Unauthorized duplication is prohibited. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Published in both hard print and audio.

wwgrctwvf_rsdadvisory

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

Shane Schulz is on a mission. He’s gained experience, knowledge and spiritual enlightenment through his own journey. He’s able to relate on a level many would not understand. He has knowledge of military academies, co-dependency, co-addiction, dependency and addiction, personality disorders, homelessness, abuse and child abuse. He understands varying emotions, self loathing, low self esteem, grief and depression. He’s familiar with post traumatic stress disorder (PTSD), types of suicide, ideations and therapy. He understands the importance of love and acceptance. After a bit of a hiatus and feeling a sense of dis-ease, a purpose yet to be fulfilled, and a heart that hadn’t beat for a purpose in some time.. it came suddenly.

After about 2 years of feeling stuck, that place inside us, most of us know, he felt the beat again and Arisen Strength was born. Listen to The Beginning- Arisen Strength Concept and Mission

ArisenStrengthMicrophone

Shane together with co-host Wayne Hacker bring you a weekly podcast Sunday nights at 8:00 p.m EST. They aim to help others bring their suppressed dreams and talents back to life again! Harnessing both your purpose and your strength. Do you know your purpose? Your strength? Arisen Strength is bound to awaken what’s already inside you.

A few episodes have included, but are not limited to Bullying, Lyme Disease, Multiple Sclerosis, Mental Health Awareness Month, Lupus, Mold Awareness, Depression and PTSD, When Life Gets Hard, Domestic Abuse, The Freedom of Acceptance, Addiction, Understanding Depression, Donorship and the Human Factor, Autism, Self Esteem, and To Encourage and Empower.

Through his higher power, his God, and new-found determination that began anew with that beat of his heart it wasn’t just Shane who was born again that day, but Arisen Strength, too.

He shares his journey so that you might identify with him and the message he brings for you. When you think you have failed, lack self-worth, are without strength, with an unfulfilled purpose, he will bring back that strength in you and help you rise to your fullest potential. He’s a motivational speaker for Serenely Speaking which he also founded.

Shane and Wayne bring you topics often dismissed.

Shane Shultz- Arisen Strength Cropped

In an interview with Shane he mentioned primary and secondary emotion’s. I knew right away where he was going even though we didn’t stay on topic more than a minute or two. It’s important for me to mention this because by him being aware of the primary and secondary’s in such a way of already realizing how emotions impact our everyday lives, he’s able to utilize this knowledge as he helps bring you out of the emotional roller-coasters of life. The negative impact of our own emotions and the consequences that come with them can be devastating.

We need to learn how to replace negative feelings of hopelessness with a positive sense of well-being.

The www.arisenstrength.com website is born!

Arisen Strength events can now be found ALL in one spot!

1. Watch the show and chat with friends in the Arisen Strength Chatzy Show Room!
*They have a Mobile app built into the page for those who watch on their phone!

2. Twitter Feed
3. Facebook Feed
4. New Spotlight Videos
5. Both Shane and Wayne have their own Blog that you can comment on.
6. Feedback – They want to hear from you!

Check them out! There’s more to come.


FACEBOOK –

https://www.facebook.com/ShaneSchulzHostofArisenStrength – Profile Arisen Strength

https://www.facebook.com/groups/TheArisenStrengthFamily/ – Brand NEW- The Arisen Strength Family

https://www.facebook.com/shane.schulz.speakingtotheheart – Profile (Serenely Speaking owns Arisen Strength)

http://www.chatzy.com/ArisenStrength – This is the Interactive Show Room where you  can watch
the show and chat all in one place.

TWITTER –

https://twitter.com/ArisenStrength

@ArisenStrength

https://twitter.com/serenelyspeakn

@serenelyspeakn

“How It Works In Reality” (Episode 19)  – An episode where Shane and Wayne explain how they use the
Arisen Strength concepts in their daily lives

https://youtu.be/WHXRt33Z584


EMAIL –

ArisenStrength@gmail.com