Twinkle was diagnosed in 2003 with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy Syndrome (CRPS/RSD), a painful, debilitating and often progressive central nervous system disorder. A spinal cord stimulator has helped manage her pain, and she has expanded her advocacy efforts on behalf of those with neuropathic pain disorders from online to in-person events. As advocacy director and executive board member for the Power of Pain Foundation, Twinkle works on policy efforts, patient awareness and many other aspects of chronic pain.
I learned in September that I was chosen as a 2015 Bakken Honoree. It didn’t seem real. My pill is my Spinal Cord Stimulator. It has been since 2006. So when I’m advocating for pain medication, I’m not advocating for me, I’m advocating for options and for those who need them to be able use them safely. I don’t disagree that there is a problem with abuse or misuse, but I don’t agree that it’s due to the reasons put forth in the mass push that one thing leads to another. It isn’t always so.
When I say, we, or us, I’m including myself to not dismiss someone else from me. I’m no better than the person who needs the pain reliever to survive and I’m no less than the one who doesn’t.
Only 2 of the 12 Honorees are from the United States. I’m one of those 2. Each honoree has an amazing story to share and is living with a form of medical technology. I advocate for these options as well. Without force or mislead intentions, options are what allow us hope and survival. It isn’t about Pharmaceuticals, invasive treatments, or the non-invasive it’s about what relieves each individual. What might work for me, may not assist another and what may not assist me, may respond to someone else.
I could have removed the body piercings from my life. I could have. They didn’t evolve from nothing other than pain in the first place. Each piercing multiplied as a diversion to pain during the time when I was left in medical limbo. They were my self-medication. No! Not everyone becomes an addict. Not everyone in unrelenting pain seeks more and not everyone turns to heroin. I’ve taken enough in my lifetime and I’m not nor have I ever been in the classification of this epidemic. I leave the piercings so that you will judge me. Falsely judge me. It’s your mistake, not mine. It’s your perception, what you create and believe in your mind. I chose to fight pain, and learn from it. I chose to use the tools provided to me in the multidisciplinary approach and in the Medtronic Spinal Cord Stimulation and I choose to maintain the lowest dose of a single type of pain medication in order to allow me to function enough to get out of the home a few times a year, weight bare enough to feed my dogs, not be confined to a wheelchair, advocate with the Power of Pain Foundation, watch my grandson grow, be a part of my children’s lives and care give to my husband of nearly 30 years.
I’m not able to drive; I have to rely on someone else. I have to work around their time, schedules and life in order have that ride.
Sometimes it’s enough to want to give up, but I haven’t. The Power of Pain Foundation has honored me in my decline and ability as much as I have honored them in all that they do. It’s for this reason that they are the grant recipient for my award.
Only once in a lifetime are you recognized for something so humbling and it was for nothing more than using my new life to live on and give on because that is what I’ve done.
The Power of Pain Foundation is seeking a volunteer who can commit to approximately 5 hours per month to run our 2016 Webinar project. Some media background is required. Duties include but are not limited to contacting speakers, confirming dates and times. You would provide confirmation details to Executive Director Ken Taylor in a timely manner for promo purposes. Set up webinar page, and run webinar software during events. POP President, Barby Ingle will be serving as host. If she is unable to host, you, the Webinar Director will fill in. The title of your position is IPF Webinar Director.
The Power of Pain Foundation is seeking writers to produce original content for an original project. Both healthcare professionals and non-healthcare contributors are encouraged to apply. Space is limited.
If you write for this project, the article will be accredited to you, as the author. You would be giving Power of Pain Foundation permission to publish it in our upcoming magazine and use it in POP circulation materials. Our content contributor articles are being reviewed by multiple medical professionals for accuracy and fairness prior to publication. These reviews may include edits. You still retain author rights other than the permissions granted to publish and distribute without compensation from the Power of Pain Foundation in conjunction with this project.
You will need to review, sign and return a non-disclosure agreement prior to receiving your assignment.
If you’re a writer, blogger, or contributor with another organization or facility there is no conflict unless you create one by disclosing information and confidentiality protected by the agreement.
To be more precise, you may not use, discuss or write about your assignment during the project’s development. You need to be able to produce original work and be able to submit on a deadline.
If you’re interested, we would love to hear from you.
The West Coast Pain Summit was held on November 14, 2015 at the Elk Grove Public Library Conference Room. In attendance was Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com), MarLeice Hyde – Erasing Pain (erasingpain.com) and Michael Connors, LVN. Harmony Home Care (harmonycareathome.com). We had local and out-of-town attendee’s join us. Our Power of Pain Foundation Delegates Erik and Kharisma VanFleet assisted as needed and 9-year-old ‘Tai Howard offered a friendly smile and a well-behaved demeanor.
Mr. Clete Dodson won our Power of Pain Long Sleeve Shirt chosen from the in person drawing. Monique Maxwell was chosen for our #NERVEmber silent drawing.
My presentation included, but was not limited to:
Welcome to the First Annual West Coast Pain Forum hosted by the Power of Pain Foundation.
This year hosted and sponsored by both the Power of Pain Foundation and Medtronic Neuromodulation.
Our topics today include Access to Care, Advocacy and Neuromodulation with Medtronic Pain Therapies from Medtronic.com and TameThePain.com
Access to Care
There are 8 key areas to the Patients’ Bill of Rights
You have the right to accurate and easily understood information about your health plan, healthcare professionals, and health care facilities.
You have the right to your choice of providers and plans.
You have the right to emergency services. (Emergency department, urgent care)
You have the right to take part in treatment decisions.
You have the right to respect and non-discrimination
You have the right to confidentiality. (Privacy of healthcare information)
You have the right to file complaints and appeals.
You have the right to your consumer responsibilities. (Take an active role in your own health and well-being. Doctors are only a tool, too. )
Understand your symptoms
Communicate with caregivers and healthcare professionals
Communication is essential.
Become an expert in your pain
Be prepared when attending your doctor’s visit.
Keep a pain journal.
Write down your questions.
Do you have concerns about your medication, or treatments?
Have a shared understanding of your pain and symptoms.
Get emotions under control.
Be assertive, but listen to others.
Describe your pain. (Don’t just say its pain. Does it burn, stab, pinch, tingle. Does it feel like cutting, aches, or throbbing? Is it localized or all over? Is it instigated by stress, depression, emotions?) Your doctor can’t help you if you’re not able to communicate.
Take someone with you to your appointments.
Take responsibility in reaching goals.
Caregivers: Be mindful and assertive in caregiving. According to the Department of Pain Medicine and Palliative Care at Beth Israel Hospital in New York, a family caregiver is “anyone who provides any type of physical and or emotional care for an ill or disabled loved one at home”. For this definition, “family” refers to a nonprofessional who is called “family” by the person who is sick. Sometimes, family is whoever shows up to help. (IN the FACE of PAIN, 5th edition, page 40)
Be easy on your caregiver without them you might not have any one to care for you. If you’re both a patient and a caregiver, be easy on each other. No one knows better than both of you.
Keep one network of physicians. One primary care provider, let referrals be given by only him or her.
Use only one pharmacy. Have medications sent to the same location. Pick them up from that location.
Don’t allow more than one physician to prescribe you an opioid pain medication.
The PDMP/ Prescription Drug Monitoring Program contains records of your prescribing history and is maintained and reviewed for changes in your habits.
When visiting ED’s describe your pain on the 0 – 10 NRS or Numeric Rating Scale which is most commonly recognized in emergency care. The NRS Scale for pain measures the intensity of your pain. It’s the 11 point numeric scale with 0 representing “no pain” and 10 representing “the worse pain imaginable”, “as bad as you can imagine” or unimaginable and unspeakable pain”.
Don’t tell the doctor your pain is an 11 or 20. You may be found unbelievable and your access to timely and proper care may be delayed, or in some instances even denied. You want them ready and willing to assist and care for you without second guessing.
Medications don’t work if we don’t take them. They’re prescribed to be taken as directed. Not doing so can lead to flare ups, increased pain, adverse reactions, withdrawal and misuse.
Examples of non-adherence
Not filling prescriptions
Not picking up filled prescriptions from the pharmacy
Stopping medication before instructions say you should
Taking more than instructed or at the wrong time of day
*(IN the FACE of PAIN, 5th edition, page 16)
Many patients, including myself, have a severe Vitamin D deficiency in addition to the dystrophy caused by their diseases, or syndromes. Dystrophy is defined as – a disorder in which an organ or tissue of the body wastes away. This includes the bone and tissue in the mouth, jaw, teeth, and gums. Access to care can be a setback when our teeth decay, break away, or we’ve lost them as a result. Lacking dental insurance is an issue of its own. Judgement regarding addiction, misuse and drug seeking can hinder care until each time we prove otherwise. Additionally, BiPAP and CPAP use can contribute to dry mouth and decay. Moisture removed from the mouth is another price we pay just to breathe.
The California Legislature approved a bill (Assembly Bill 374) the second week of September. Step Therapy required that a patient try and fail (fail first) a medication before being allowed to take the one their physician would have otherwise prescribed for them. AB 374 now allows providers in California to fill out a form to bypass step therapy requirements.
The PA Shuffle: Prior Authorization; information on our efforts can be found at our table, next to our ADF Policy efforts.
An energy assistance program is available through SMUD for qualifying patients who use specific medical devices. You can request the Medical Assistance Program Application by calling the Residential Inquiries number located on your bill.
Each of the above can assist in access and care. ( 7 min ) ^
Pain Clinic (15 mins)
Break, meet and greet, #painPOP info
We’d love to have you take part in our #painPOP in the parking lot after the conference for photos and a bit of fun in raising awareness for National Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome Month. Our #painPOP campaign is participate or donate. Accept a challenge or donate to our cause.. I challenge all of you to raise awareness for the painful, debilitating and often progressive Neuro autoimmune illness that desperately needs a cure, an understanding for better quality of care, early diagnosis for stabilization or remission, and continued education and support materials, programs, free public educational events and conferences that we provide free to patients, caregivers, the healthcare community and the general public. We can’t do it without the help of awareness and funding. If you didn’t receive your raffle ticket joining us today, ask for one. Check NERVEmber.org tomorrow to see if you’ve got the winning numbers. You’ll be contacted to be sent your prize. Medtronic is up next with a demo, overview and a Q & A session. Enjoy each other!
The Power of Pain Foundation Co-Sponsored SB 623 ( Abuse-deterrent Opioid Analgesics ) with Assemblyman Jim Wood and attended the live press conference held at the California State Capital on March 24, 2015. We will continue to support this bill in 2016. The bill will provide a safer alternative option to opioid medications by deterring several non-swallowing ways opioids can be abused.
You can join our international Delegates team by visiting: powerofpain.org/delegates-of-popf
We’re always looking for committed local volunteer advocates to support our legislative and policy efforts. The Power of Pain Foundation is a member of:
The Consumer Pain Advocacy Task Force (CPATF) which is comprised of national leaders and decision-makers from 16 consumer-nonprofit organizations that are dedicated to patient well-being and supporting the use of effective methods for pain treatment. The State Pain Policy Advocacy Network (SPPAN) first convened these leaders in March 2014 to organize a collective action effort to benefit people with pain. consumerpainadvocacy.org
SPPAN is an association of leaders, representing a variety of health care and consumer organizations and individuals, who work together in a cooperative and coordinated fashion to effect positive pain policy on the state level—policy that guarantees access to comprehensive and effective pain care for all people living with pain. Power of Pain Foundation is one of the original SPPAN partners. sppan.aapainmanage.org/
As POP Advocacy Director (POP 2011-12) and a SPPAN leader since 2013, locals would be working with me, as needed, to attend and represent us at the Capital.
We thank you all for attending today. We look forward to seeing you again next year. Please visit powerofpain.org for our education, awareness, advocacy and access to care missions.
After the conference we popped the pain out of ’em! #painPOP
#painPOP with attendees from WCPS
Published on Nov 14, 2015
#painPOP with some of the attendees from the POP’s West Coast Pain Summit 2015 for neuropathy awareness in #NERVEmber #ihavethenervetobeheard #doyouhavethenervetobeheard #powerofpain http://PowerofPain.org/conditions #ShareAndMakeAware #ParticipateAndOrDonate
Additional photos can be found on the Power of Pain Foundation’s Facebook Page at facebook.com/powerofpain in the 2015 POP Events Album.
Lynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Twinkle VanFleet – Advocacy Director (powerofpain.org) and Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com).
The 8 key areas of the Patient’s Bill of Rights
Information for patients
You have the right to accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, help should be given so you can make informed health care decisions.
Choice of providers and plans
You have the right to choose health care providers who can give you high-quality health care when you need it.
Access to emergency services
If you have severe pain, an injury, or sudden illness that makes you believe that your health is in danger, you have the right to be screened and stabilized using emergency services. You should be able to use these services whenever and wherever you need them, without needing to wait for authorization and without any financial penalty.
Taking part in treatment decisions
You have the right to know your treatment options and take part in decisions about your care. Parents, guardians, family members, or others that you choose can speak for you if you cannot make your own decisions.
Respect and non-discrimination
You have a right to considerate, respectful care from your doctor’s, health plan representatives, and other health care providers that does not discriminate against you.
Confidentiality (privacy) of health information
You have the right to talk privately with health care providers and to have your health care information protected. You also have the right to read and copy your own medical record. You have the right to ask that your doctor change your record if it is not correct, relevant, or complete.
Complaints and appeals
You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the actions of health care personnel, and the adequacy of health care facilities.
In a health care system that protects consumer or patients’ rights, patients should expect to take on some responsibilities to get well and/or stay well (for instance, exercising and not using tobacco). Patients are expected to do things like treat health care workers and other patients with respect, try to pay their medical bills, and follow the rules and benefits of their health plan coverage. Having patients involved in their care increases the chance of the best possible outcomes and helps support a high quality, cost-conscious health care system.
According to the presentation at the POPF Midwest PAIN Expo attendee’s learn the importance of the of the “Patient Bill of Rights” (“Patient Rights” 3). (et al.)
We look forward to seeing you next year!
Twinkle VanFleet, Sacramento resident and pain patient. Executive Board Member and Advocacy Director, Power of Pain Foundation.
Since 2012, the estimated rise in addiction and opioid related abuse was an astounding 26.4 to 36 million people throughout the world. The accidental overdose of prescription related deaths were 4 times the amount of similar deaths in 1999. According to the National Survey on Drugs Use and Health, 70 percent of all people who abused prescription analgesics got them from friends or relatives while 5 percent got them from a drug dealer or the internet. While most of the focus has been on patients abusing their medications we must not lose sight that the majority of these patients take their medication as prescribed. The negative innuendos influence the positive conclusion that long-term opioid treatment does in fact give quality of life to not only cancer patients, but non-cancerous chronic pain patients whose pain cannot be controlled any other way.
In an effort to deter abuse and/or misuse in patients, family, friends or associates, decrease the value in street sales, reduce the drug epidemic in certain populations, abuse deterrent formulations (ADF) are beneficial step forward in the diversion of the prescription drug issue.
OxyContin, Nucynta ER, Opana ER, Oxecta, Embeda, and Targiniq each contain abuse deterrent formulations (ADF) or tamper deterrent formulations (TDF). The most common form of abuse is by swallowing the medication. Other forms are chewing, swallowing, snorting, ingesting, inhaling, and injecting for the fast acting euphoric effect. Naloxone is a narcotic that reverses the effects of other narcotic medicines and can be used to treat drug overdose in emergency situations. Naltrexone hydrochloride blocks the effects of opioids by competitive binding (i.e., analogous to competitive inhibition of enzymes) at opioid receptors. Naloxone and Naltrexone are both opioid antagonists and each conclusively block the body from experiencing the opiate and related endorphins. This occurs by binding of the opioid receptors with higher than affinity than agonists, but do not activate the receptors.
TDFs will protect people who decide to modify the medication’s original form by removing the opioid for prompt use and abuse. Otherwise, extraction acts quickly and the time it takes to produce its effects can be immediate.
ADF’s contain ingredients for safer distribution. Patients would continue to receive the management of pain and physicians would be less likely to stop providing access to pain care.
Not all patients should be diverted to ADF or TDF by their physicians. Patient Evaluation and Risk Stratification should be utilized to mitigate potential risks. Pharmacies and insurance companies should not be allowed to replace an Abuse Deterrent Formulation prescription opioid for a similar generic non ADF opioid. The prescription drug abuse issue has brought an adverse impression onto honest patients with incurable and intractable chronic pain syndromes and diseases and has left some pain professionals feeling perplexed.
With the continued development of these safer opioid medications we are contributing to the future of better health and pain care practices. Pain patients must remain a high priority in the midst of the current and ongoing concern that prescriptions will likely be misused or abused. It is imperative that patients be assessed on an individual basis and not as an assumption to the status quo.
We must find a balance that separates patients who truly need opioid medication to live productive lives and those who are abusing them. Responsible patients should not be punished in an attempt to crack down on prescription drugs and opioid abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic intractable pain patients in mind.
Patients are being labeled for their chronic pain identity. In the last year or more they have not been receiving their medication management either by their physicians, insurance or pharmacy. In one instance, I was informed that a patient with no history of abuse was being referred to what seemed a drug rehabilitation program in order to get her medication. If she did not comply, she would not receive.
Another gentleman, previously prescribed Suboxone for pain management, now cannot receive opioid managed care because the information in his Prescription Drug Monitoring Program insinuates prescription drug abuse.
Steps need to be taken to ensure that notes are added to the PDMP/CURES database on individuals. Suboxone itself is only an implication without verification for what the medication was prescribed for.
On behalf of those who need, not want, but need medication to sustain quality of life, I call upon our legislative leaders to be proactive in this area. Help stop the abuse without penalizing those of us who are able to live at least a modicum of life due to the effectiveness of these prescription pain medications.
Think about it, as if you’re needing to… no! really needing to, begging to, ease your Mama. Close your eyes and imagine.
I call on you to not make any compromises for a standard not yet met.
America’s Addiction to Opioids: Heroin and Prescription Drug Abuse. Nora D. Volkow, M.D. May 14, 2014.
Senate Caucus on International Narcotics Control. NIH National Institute on Drug Abuse
I have the nerve to be heard, do you have the nerve to be heard? POP for PAIN with hashtag #painPOP by the Power of Pain Foundation. We invite you to take the challenge or donate to either spread continued awareness and advocacy efforts or assist in educational funding for nerve pain diseases, syndromes and conditions.
Our balloons are safe for both you and the environment. Instead of a balloon release, our #painPOP offers you the opportunity to be involved even with physical limitations. We considered the noise in the pop, we considered those whose hands are not well and we considered the air.
We have taken into account those with PTSD from wartime. We would not wish you harm in any way, nor would we have you pop to startle you. No one is forced to do either. This is meant for fun, a distraction from our own pain; enlighten pain in others, and to promote understanding, compassion and hope. I participated in the ice bucket challenge last year and my body had a fit, but for ALS sufferers, I did it. I don’t have ALS, I have CRPS, CSA, OSA, other sleep disorders, Cheyne Stokes, Hypertension, Anxiety disorder, DDD, Arthritis (Juvenile Arthritis), PTSD and various extras. Pain is hard, not being able to breathe evenly is hard, having a brain that doesn’t send the proper signals to the muscles that control breathing is hard, not being able to stay awake is hard and not being able to sleep is hard, being on my legs is hard, but we don’t always have to be hard on ourselves.
I was challenged in the #painPOP by Power of Pain’s Executive Director Ken Taylor. Of course, I accepted, even though I’ve been quite unwell for weeks now.
If we tell ourselves we can’t participate in anything due to the setbacks in pain then we never will.
Here’s how it works:
If your balloon has a POP (Power of Pain) logo, be sure to have it facing the camera.
To the camera say: I have the NERVE to be HEARD! (pop the balloon) do YOU have the NERVE to be HEARD! hashtag #painPOP participate or donate to powerofpain.org
Or if you want to challenge someone:
I have the NERVE to be HEARD! (pop the balloon) I challenge (state their name’s) to Have the NERVE to be HEARD! hashtag #painPOP participate or donate to www.powerofpain.org
You can have fun with it. Be creative. We also want you to be safe and content.
We look forward to sharing your submissions and celebrating with you.
Power of Pain Foundation recognizes the value of every person who makes up the chronic pain community. We are guided by our commitment to excellence, leadership and patient empowerment. We demonstrate this by:
* Providing educational resources for physical and emotional care * Advancing excellence in pain awareness of the over 150 conditions involving chronic pain and what patients are faced with on a daily basis * Strengthening our relationships with hospitals, pain clinics, pharmaceuticals, support groups and our chronic pain community * Demonstrating social responsibility through the use of our pain resources. The commitment of volunteers, physicians, community partners and friends to the Power of Pain mission, permits us to maintain a quality presence and tradition of caring, which are the hallmarks of the Power of Pain Foundation.
We hope that you participate in our #NERVEmber projects and if you are unable due to any restrictions that instead you share someone who has so that together we can fulfill the mission of the Power of Pain Foundation to give a voice to the communities that need it most.
#NERVEmber is International Nerve Pain Awareness Month (including RSD, CRPS, Diabetes, and more). Each day during the month of NERVEmber the @PowerofPain Foundation will present an awareness task that we can all perform!
This year we are also giving away over $1000 in prizes available for everyone who registers to participate and use the hashtags, complete tasks, host or attend an event. The more you participate in OFFICIAL #NERVEmber events, the more chances you have to win! Check out all events going on in our NERVEmber Event Calendar.
A list of diseases, syndromes and conditions that involve nerve pain as a symptom.
The autonomic nervous system is a control system that acts largely unconsciously and regulates the heart rate, digestion, respiratory rate, pupillary response, urination, and sexual arousal. This system is the primary mechanism in control of the fight-or-flight response and its role is mediated by two different components.
Autoimmune diseases arise from an abnormal immune response of the body against substances and tissues normally present in the body (autoimmunity). This may be restricted to certain organs (e.g. in autoimmune thyroiditis) or involve a particular tissue in different places (e.g. Goodpasture’s disease which may affect the basement membrane in both the lung and the kidney).
Other types of neuropathy conditions include; toxic, metabolic, trauma, compression entrapment, infectious, and congenital hereditary. These conditions are typically treated by multiple types of medical professionals. The goal of treatments should be to understand the physiological system of the condition and then working to prevent permanent painful neurological transformations.
The first National Pain Strategy Chat was held on September 29, 2015. Hosted by the Power of Pain Foundation with formal guest speakers Bob Twillman, Executive Director of the American Academy of Pain Management, Lynn R Webster VP of Scientific Affairs, PRA HS, Former President of the American Academy of Pain Medicine, Author of The Painful Truth and Christin Veasley, founding member of the Chronic Pain Research Alliance, whose mission is to advance scientific research on prevalent, neglected and poorly understood pain disorders that frequently co-occur and disproportionately affect women.
“The Assistant Secretary for Health and Human Services (HHS) asked the Interagency Pain Research Coordinating Committee (IPRCC) to oversee creation of this resultant National Pain Strategy. Guided and coordinated by an oversight panel, expert working groups explored six important areas of need identified in the IOM recommendations—population research, prevention and care, disparities, service delivery and reimbursement, professional education and training, and public awareness and communication. The working groups comprised people from a broad array of relevant public and private organizations, including health care providers, insurers, and people with pain and their advocates.”
Excerpt from EXECUTIVE SUMMARY Page 3.
National Pain Strategy
A Comprehensive Population Health-Level Strategy for Pain
Attendee’s included but are not limited to, Women in Pain (@forgrace), Gina Salminen (@gnsalminen), American Academy of Pain Management (@AAPainManage), PAINS Project (@PAINSProject), The Pain Community (@PainComm), Fibro and Pain (@FibroAndPain), US Pain Foundation (@US_Pain), State Pain Policy Advocacy Network SPPAN (@SPPAN1), The American Chronic Pain Association (@ACPA), Reflex Sympathetic Dystrophy Association RSDSA (@RSDSA), Community Pain Center (@Our_CPC), Bob Twillman (@BobTwillman), Lynn Webster (@LynnRWebster), Christin Veasley (@CPRAlliance_org), Power of Pain Foundation (@powerofpain), Barby Ingle (@barbyingle), Consumer Pain Advocacy Task Force CPATF http://consumerpainadvocacy.org/twitter-chat/
While I participated to send out Questions, and re-share answers, I used the opportunity to listen instead of voice any thought at this time.
In closing, The Power of Pain Foundation asked – We’ve covered quite a bit today. Would you be interested in a future chat about NPS—if yes, on what? #CPATF #NPSChat
My response- Yes. Q and A’s educate to form solutions and partnerships. Chats provide opportunity for involvement.
This was my only contribution. For those who haven’t read the National Pain Strategy, I encourage you to do so now. We often want to be involved and voice our opinions, we want to help make change, or be there to advocate for our loved ones, or ourselves, yet too often we rely on others to tell us what something is, what it says, or what it’s all about. You have to read it for yourself, otherwise, you’re only receiving pieces and parts and from another’s perspective. I’m not embarrassed to admit a one time read isn’t enough. Neither is the second re-do. It’s in-depth and complex.
Future chats are important for all of us to come together to discuss the report.
After the NPSChat I was asked “@rsdcrpsfire @powerofpain Do you believe Sean Mackey cares? or NIH cares?”
I did exchange further conversation with the person who asked and replying to other questions. And I hope Mr. Mackey does care as my own daughter is now in the care of Stanford, both transplant center and pain management. His job is above caring though. Learning that Dr. Mackey’s parents both live with chronic pain didn’t really impact me. It only means that he does in fact have a personal connection to pain in addition to his education and experiences. It doesn’t mean at all that it will influence him either way. Of course my heart goes out to his parents.
It’s like saying “my best friend is black” to appease a situation of color. Stating a family member has chronic pain is like attempting a nudge toward acceptance. It doesn’t make any difference to me. Actions speak louder than words, so we’ll see and I do mean that with the utmost respect.
For the sake of the NPS and those of you who support it, I support it for you at this time. I’m not entirely certain of its benefits or that it will be implemented properly. Like most strategies, guidelines, and law the benefits are often dismissed when they matter most.
Having been apart of change and implementation for the current California Pain Management Guidelines I’m not naive to opioid prescribing, risks or need.
There are too many guidelines being developed. The CDC, government and state levels. The only people who are going to suffer are those who are labeled with “pain”.
Opioids don’t kill, being irresponsible does. The double-edged sword in under treated pain and prescribing.
Take Our Survey About the CDC Opioid Guidelines September 29, 2015 By Pat Anson, Editor
The faces and limbs in these videos are many of the people you have crossed paths with over the years. They may be your friend, colleague, or acquaintance. For other’s, you may not have realized what it is they endure. They’ve shared this part of themselves to educate and bring awareness to Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. The faces you gaze upon seem fine, look well enough, perhaps not even a glimpse of pain, or discomfort. Such an illusion. The delusion lies less in the patient who complains than it does in the provider who doesn’t care to look beyond what initially seen. You’ll then watch the limbs of people and if you make note, you’ll find that those faces … live with more than just an ache. To see it, you have to look beyond the faces.
It’s Pain Awareness Month. Share and make aware to continue the common mission of all of us everywhere who strive to make a difference in the lives of those suffering to survive.
Uploaded on Jan 22, 2012
This is the 5th Faces of Pain video by the Power of Pain Foundation. The video contains chronic care patients who
are dealing with an autoimmune condition which attacks the nervous system, immune system, muscle, bone and
sometimes organs. For more information on the POPF or RSD please visit www.powerofpain.org. The video was
produced by Twinkle VanFleet and Kurtis VanFleet. Background Image taken by Kurtis VanFleet. This video is
property of the POPF copyright 2012. All rights reserved. The Power of Pain Foundation is a 501(C)(3) Charity.
“Little Wonders” by Rob Thomas (Google Play • iTunes • AmazonMP3)
Published on Jul 12, 2012
This video goes through pictures of RSD/CRPS patients who have visual symptoms of their extremities (hands, arms,
legs and feet). RSD is a Neuro-Autoimmune condition which affects many aspects of the body. For more information
visit Power of Pain Foundation. Special thanks to Twinkle and Kurtis VanFleet, and singer Page Jackson.
Published on Aug 2, 2014
Faces of Pain Video – 6th edition for Power of Pain Foundation
Created by Twinkle VanFleet, Executive Board Member, Power of Pain Foundation
Spanish Translations by Vanessa Lara, California Representative, Power of Pain Foundation
The World Autoimmune Arthritis Day was a 6 day long education and awareness event. Beginning May 15th and ending the 21st of May, 2015. Prior to the event beginning one of our board members lost her son from irreversible injuries and damage from a car accident. Barby’s dad was hospitalized and her mom passed away so when the race started she was still laying her mom to rest. The day before the race ended my mom was rushed to emergency surgery to have a pacemaker implanted. Another Board Member was hospitalized 2 days before the event ended and we’re thankful for all she put in before that. As a team we pulled through. All of us everywhere work through our pain and struggles. I commend you all for leading, teaching, raising awareness and educating. Thank you!
I enjoyed attending The Frustrating World of Autoimmune Arthritis Webinar presentation hosted by the (IFAA) International Foundation for Autoimmune Arthritis co-founders, Tiffany Westrich-Robertson, Tami Caskey Brown, and Kelly Conway, I found it educational regarding access to care, medication management and diagnosis. I took another detour with WE GOT AWARENESS! SELF-ADVOCACY IN THE MODERN DAY presented by WEGO Health who I’ve advocated for as able over the years. WAAD15 was a great distraction for all that we had going on in our lives. Everyone having fun to raise awareness for Autoimmune Arthritis and even learn about other non profits.
Our Cheerleader for life!
World Autoimmune Arthritis Day sources and resources
Coming into the home stretch it was clear 3 teams were going to take 1-2-3, but which order? Throughout the race they continued to pass each other, and it came down to who submitted the most selfies and videos, which continued to pour in until the deadline from POPF’s entire staff and Board Members!
The final tallies were as follows:
Your Top 10
1. Power of Pain Foundation 3,903 mileage points
2. National Rheumatoid Arthritis Society 3,768 mileage points
3. Relapsing Polychondritis Awareness and Support Foundation Inc. 3,394 mileage points
4. International Foundation for Autoimmune Arthritis (IFAA) 2,332 mileage points
5. Sjögren’s Syndrome Foundation 1,736 mileage points
Thank you to the remaining Nonprofit Teams as well. Without your resources and participation this event could not have been possible:
National Ankylosing Spondylitis Society
Creaky Joints/Global Healthy Living Foundation
Arthritis National Research Foundation
National Psoriasis Foundation
International Federation of Psoriasis Associations
National Data Bank for Rheumatic Diseases
Arthritis Consumer Experts/Joint Health
Raynaud’s and Scleroderma Association
Canadian Spondylitis Association
Patient Advocate Foundation
Arthritis New Zealand
The Power of Pain Foundation presents the Melanie McDowell Pain Awareness and Advocacy Award annually. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy pain conditions. Nominations are solicited in the pain community for people who are making a significant contribution within the field of research, education, awareness, or patient assistance.
Nominations accepted between April 1 and June 30, 2015
Mr. Dominick Spatafora is the 2014 recipient of The Power of Pain Foundation’s Melanie McDowell Pain Awareness and Advocacy Award. This is in recognition of his outstanding work and advocacy for people in pain. Mr. Spatafora’s awareness contributions to the neuropathy and chronic pain communities are outstanding. Mr. Spatafora is the president of the Neuropathy Action Foundation (NAF). Dominick founded the Neuropathy Action Foundation because of his commitment to educate the public on what neuropathy is and most importantly to help other neuropathy patients obtain and maintain appropriate individualized care. Dominick is a healthcare consultant and an expert in healthcare administration. He used this knowledge to create advocacy. The NAF which he founded in 2006 which focuses on awareness, education and empowerment. He brings together advocates and patients in legislative days, educational conferences, and news conferences to raise the awareness of the challenges of getting proper care including infusion therapy.
2013 – Paula Abdul
Ms. Paula Abdul is the 2013 recipient of The Power of Pain Foundation’s Melanie McDowell Pain Awareness and Advocacy Award. This is in recognition of her outstanding work and advocacy for people in pain. Ms Abdul’s awareness contributions to the reflex sympathetic dystrophy, lupus, neuro-muscular dystrophy, and chronic pain communities are outstanding. Ms Abdul has participated in television and print interviews sharing her personal story of living with reflex sympathetic dystrophy. She is actively engaged in social media helping to shine a spotlight on improving the quality of life, offer a chance for rehabilitation, decrease the sense of isolation and alienation, and increase the hope our pain population experiences.
2012 – Trudy Thomas
The 2011 McDowell Chronic Pain Advocacy Award is being presented to Trudy Thomas, host of Living with Hope. Trudy demonstrates all of the qualities we are looking for in awarding this honor. Thank you to Trudy for all she does for the RSD and Pain Community.
2011 – Barby Ingle
Barby has been battling a Neurological condition for over 11 years now. Reflex Sympathetic Dystrophy, is a progress Neuro-Autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over. I know firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. As I search for a cure, I have become my own best advocate and work sharing the information so that you can be yours. Even after seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, and so much more – I did not give up or give in! I was tested to my limits and realized they are past the boundaries I placed on myself. I had to become the Chief of Staff of my Own Medical Team. If I can do it, anyone can.
2010 – Mary French, RN
Mary French, RN, MSW, LCSW-C is the 2009 recipient of The Power of Pain Foundation’s 2009 McDowell Pain Advocacy Award in recognition of her outstanding work and advocacy for pain patients. The award was presented to Mary on September 12th at the 3rd Annual Comic Pain Relief held at George Mason University Center for the Arts in Fairfax, Virginia. Barby Ingle, Executive Director, said, “The motivation and drive you offer pain patients helps to keep others on track with goals and positivity as they deal with chronic pain issues.”
2009 – Mackenzie Bearup
Ms. Bearup is a 16 year old Reflex Sympathetic Dystrophy (RSD) patient who used her experience and love of reading to help others in pain. She started a book collection at Murphy-Harpst Children’s Center in Cedartown, NJ for their new library. Mackenzie knew that she was helped through her pain by reading books and thought that she could help other children who are going through unbearable pain of their own. She set out to collect 300 books for this local children’s center and in 2009 turned this project into a non-profit charity, Sheltering Books. Since she began just a few years ago she has collected 38,000 books.
2008 – Dale Lehn
“If you have chronic pain, after talking to clinical people all the time, the issues seem to go on and on…you feel you are always explaining yourself. But if you talk to someone else with chronic pain there’s an immediate recognition, a correlation, a knowing that you’re talking at a level you both understand. For people who have chronic pain every day of their lives, like I do, it’s really freeing to speak with someone you don’t have to explain everything to—someone who already knows exactly where you’re coming from. The people I work with also become honest with others about their pain. In dealing with pain, like dealing with alcoholism, shame often plays a big part of who you are because you are not happy, joyous, and free. Many times, people in pain will not be honest with their doctors and loved-ones. But when I work with people, sometimes they’ll say, ‘I’m doing fine.’ When I ask them, ‘Is that really how you feel,’ they usually laugh and say, ‘No, this is what’s going on….’ I encourage them to be that open and forthcoming with others.” – Dale Lehn, Founder of Chronic Pain Anonymous in 2004.
2007 -In memory of Melanie McDowell
Melanie was an RSD patient and advocate from 1994 to 2006 when she passed away. Her biggest hope was that other patients would get timely and proper care. She was involved in many RSD awareness projects to promote better care for those with RSD and other chronic pain conditions. In her Memory POPF carries on the work that she was so passionate about.
Power of Pain Foundation recognizes the value of every person who makes up the pain community. We are guided by our commitment to excellence, leadership and patient empowerment. We demonstrate this by:
* Providing educational resources for physical and emotional care
* Advancing excellence in awareness of the over 150 conditions involving chronic nerve pain and what patients are faced with on a daily basis
* Strengthening our relationships with hospitals, pain clinics, pharmaceuticals, support groups and our pain community
* Demonstrating social responsibility through the use of our resources. The commitment of volunteers, physicians, community partners and friends to our mission, permits us to maintain a quality presence and tradition of caring, which are the hallmarks of the Power of Pain Foundation.