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:
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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
Patient Rights
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. )
Patient Communication
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?
Take notes.
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)
Patients
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.
Reducing Conflicts
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.
*Adherence
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
Skipping doses
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)
Potential setbacks
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.
AB 374
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 ) ^
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Introduce
Pain Clinic (15 mins)
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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!
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Introduce
Medtronic
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Advocacy
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.
Getting involved
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.
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#painPOP
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.
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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.
Consumer responsibilities
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.
One of our original RSDS Advocates, Mary LaBree, passed away on October 15, 2015 due to complications from Reflex Sympathetic Dystrophy (RSD). Mary exemplified commitment to the RSD community for over 3 decades. As the Director of the New England RSDS Coalition since 1990, Mary sought to educate and bring awareness to the public and private sectors for the disease that was virtually unheard of back then. Originally from Leicester, Massachusetts, she was formally educated at Worcester State University in Worcester, Massachusetts.
Mary secured the JULY Proclamation for RSDS To urge all of the citizens of the Commonwealth to take cognizance of this event and participate fittingly in its observance. Given at the Executive Chamber in Boston, the twenty-fourth of June in the year two thousand and eleven, and of the Independence of the United States of America, the two hundred and thirty forth.” Massachusetts Bill # 5938
She worked both locally in Massachusetts and Nationally.
Mary formed and lead seminars, attended others, developed awareness events, distributed information and educational materials. She spoke with patients, caregivers, physicians, hospitals, insurance companies, fellow educators, universities, other peer groups, and those with an interest to learn about Reflex Sympathetic Dystrophy. She was involved with grants, research and fundraising.
When Mary LaBree began advocating for RSD in the 1980’s the term Complex Regional Pain Syndrome hadn’t been created. While other names had been used previously to describe Reflex Sympathetic Dystrophy (Syndrome) it was most often referred to as RSDS.
In 2012, she reached out to me and a friendship formed. We shared phone calls, messages and correspondence by snail mail. Mary sent me a copy of the photo of she and other’s of the original signing of her proclamation and a copy of the verbiage used to secure her proclamations. I’m privileged to know what Mary looks like. For now, I’ll not share those, nor have I ever. She shared with me 30+ years of everything. How she started, how she educated, how other RSD organizations began, her children, grandchildren, colleagues, the strength it takes to endure; not just in living with pain, but being a part of it.
If you pray, why worry… If you worry, why pray?
I had plans to meet her in person twice. The first time she had to return home early. I was supposed to meet her again toward the end of October or into mid-November. I had just spoken to her less than a week before her passing.
I was in the hospital yesterday, I had an accident with my wheelchair when I tried to back it up ( standing in front of it. ) (Stupid me )when I pushed the button to back it up.. I pushed it the wrong way..And ran over my LEDs from the ankles to the knees. I was really blessed when the ER Dr. Asked what other problems did I have, & when I explained CRPS He said oh Chronic Regional Pain Syndrome , I said yes. He treated me with kindness & care. I’m going to send him a thank you card. He was really kind. You don’t always find a kind caring Dr..pls pray for me to recover. I have a lot of CRPS work to do. I will be leaving for CA in a few weeks. Ty.M
Hi, Yes I’m looking forward to meeting you as well. I leave Oct 23 on. Friday. A lil less then 2 wks.I will call u sometime on the weekend after I arrive, hugs & lots of love.M
I’m sorry I had a mistake that I didn’t want to have a group pls forgive me, as I pressed the wrong thing, & didn’t realize it until someone told me.
The next message on Oct 12, I missed due to being away and my IM being flooded and then she was gone. I was on the road to and from the Stanford Transplant Clinic for our daughter on the 15th and in the Emergency Department on the 16th due to my cervical spine. Trying to save the puppies life all in between.
The last message was in reference to an accidental group IM.
I had been wondering if she would want to make the plans to meet at the NERVEmber, West Coast Pain Forum for Power of Pain Foundation on November 14th. All I knew for certain is she planned to be here in Northern California on the 23rd of October and would call me.
Permission granted and sent from the Power of Pain Foundation to share in Mary’s memory. Melanie McDowell Awareness and Advocacy Award Nomination 2015
I wish she would have received more nominations, but mine was the only one for her. She was most deserving.
We never know for certain where our conversations go even when we chit-chat on the phone or when we think they are in confidence. I don’t know what Mary ever spoke of me to others, but I know that she must have believed in me enough with what she did share with me to know I would keep it to me and if she didn’t know for sure when she told me she knew as time went on because I’ve never told it.
She asked me sometime in 2013 to consider being trained by her for her Coalition and new endeavors. While I was most honored, I respectfully declined as I was already committed to Power of Pain.
Our conversations also consisted of but weren’t limited to life, color, ethnicity, race, the olden days, differences, equality, change and today. She shared with me uncertainties about people, places and things, and I eased her in certain fear and prejudices. Please don’t misunderstand me, I’m not at all implying Mary was prejudice, in fact, she’s not, though conversations were simply sometimes deep. Mary listened and she learned. She watched, listened to gossip, dismissed it, listened more, read, picked it apart, put it together, and ultimately decided for herself. She wasn’t afraid to speak her mind or share a maybe, what if, what do you think or did you know.
I’m humbled to have been accepted, acknowledged, taught and even loved by her.
Mary was so proud of the New England RSDS Coalition, she was thrilled that the healthcare community was finally beginning to know what RSD (CRPS) is. She was pleased that patients had informational materials to seek out and be provided. She was happy that educational events were provided free to the public.
She told me the story behind July and why her proclamations are for the month of independence and not November. As I stated Mary began educating RSD over 30 years ago. July was chosen for freedom, freedom from pain. It wasn’t until many years later that a national color evolved, and then our month of recognition. Mary was grateful for her closest friends. I know she loved her beautiful friend, advocate and poet, Jane (Gonzales).
I prayed for her health and I prayed for her to achieve her life’s work, her mission to create awareness and educate on RSD, her purpose to continue doing so, and her hope for our future.
You did Mary! You really did! You achieved them all to the last breath.
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:
Instructions
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.
Our mission
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.
AUTONOMIC*
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**
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
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
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
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.
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.
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.
A little sneak peek into next months efforts to raise continued awareness. Beginning September 1st a combination of people, groups and organizations will be brought to you for Pain Awareness Month 2015. There will be additional shares in between. These are the 8 features. The pages may be posted out-of-order of that listed at this time.
Trudy Thomas- Featured Blog Talk Radio Host and Founder of the Living with HOPE Show on The Body, Mind and Spirit Network.
Danielle Cosgrove, Founder of TheProject3x5.
Barby Ingle, President of the Power of Pain Foundation.
Shane Shultz, Founder of Arisen Strength.
Faces of Pain Video 5, RSD/CRPS Limbs Montage, Faces of Pain Video 6 (in English and Spanish).
Sheila Purcell, Founder of the United Kentucky Pain Care Action Network (UKPCAN)
The Power of Pain Foundation
The American Chronic Pain Association (ACPA) and the history of Pain Awareness Month.
Yesterday the Power of Pain Foundation Co-Sponsored AB 623 with Assembly Member Wood at the California State Capital in Sacramento where the bill was officially introduced. I spoke on behalf of both pain patients and opioid abuse. In attendance with me and on behalf of POPF and the bill was Erik VanFleet, Kharisma VanFleet, Debbie Ellis, and Brandy Ellis.
Speaking at the event was: Assemblymember Wood (author), Assemblymember Levine, Mendocino County Sheriff Tom Allman, Ralph A. Cansimbe, Chapter Commander PFC Alejandro R. Ruiz Chapter, American G.I. Forum, Representatives from bill sponsors US Pain Foundation, Power of Pain and American Chronic Pain Foundations and the CA Academy of Physician Assistants.
(Sacramento) – California legislators, public health representatives and law enforcement officials announced new legislation at a State Capitol news conference to curb prescription drug abuse and deaths. Assembly Bill 623, authored by Assemblyman Jim Wood (D-Healdsburg), aims to reduce prescription drug abuse-related deaths by reducing their access to those most prone to abusing them. More than 60 people die every day in the United States from prescription drug overdoses. Approximately 6.5 million people in the US abused prescription drugs in 2013, more than double those that abused heroin, cocaine and hallucinogens combined. “Narcotic pain medications, or opioids, have an important role in our health care system,” said Assemblymember Wood, who is a licensed dentist. “They provide effective relief for the millions of Americans who suffer from chronic pain. But too easily they are getting into the wrong hands.” Here’s more in this Assembly Access video.http://www.asmdc.org/wood
Hello, My name is T. VanFleet, I am the Advocacy Director and Executive Board Member of the Power of Pain Foundation. I am also a pain patient myself. Through painful trial and error, my physicians and I have finally found the appropriate combination of medications to provide some relief from my debilitating symptoms. The prescription medications that I take allow me to do things that most people take for granted. Now, I celebrate small triumphs such as cooking, occasionally attending a function, and watching my grandson grow. One of the medications that helped give me my life back is a prescription opioid. A type of medication which has recently come under increased scrutiny due to heavy abuse by some.
Unfortunately, people who use prescription medications as intended can become unfortunate casualties of efforts to regulate opioid abuse, as we end up getting lumped in with those who misuse treatments. It is difficult to obtain refills,, denials and delays by pharmacists and insurance, including workers compensation leave patients in withdrawal and un-manageable circumstances including suicidal ideation.
Fortunately, there are new weapons available to help combat prescription opioid abuse which do not sacrifice the many patients who legitimately use the medications to fight pain. New “abuse deterrent formulations” (ADF) for opioids have properties that make it difficult or undesirable for someone to tamper with them. These medications are made with physical and chemical barriers, such as a special kind of coating or hardness to the pill itself, that won’t allow them to be chewed, crushed, cut, grated, ground up, or melted with water or alcohol.
The Power of Pain Foundation strongly believes that California policymakers must enact policies such as AB 623 to help develop a strong, lasting solution to the health crisis of prescription opioid abuse. 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 drug mis-use and abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic pain patients front-of-mind.
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I was honored to support this bill with Assemblyman Wood on behalf of the Power of Pain Foundation. It’s important that we assist in the prescription opioid drug abuse problem. This will help responsible pain patients get access to the care they need. Too many are denied now because of the stigma attached to their chronic pain identity. Abuse deterrent formulation’s will assist both issues.
With Hosts POPF President, Barby Ingle and POPF Executive Board Member & Marketing Director and Promotions Chairman – Joeygiggles and Co-Hosts Executive Board Member and Advocacy Chairwoman Twinkle VanFleet with Power of Pain Foundation Executive Director Ken Taylor.
Discussion: Legislation- Abuse Deterrent Formulation (ADF), more Listen Here
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Out in the real world, I try not to identify as a pain patient. We will be judged. You know it, and I know it. It becomes our label. As I attempt to go forward in advocacy it can sometimes be a little awkward. Not in my physical appearance, but In my inability to speak properly, delays, memory, forgetfulness, stuttering, wake-sleep, sleep-wake. I’m heading into my 15th year with CRPS type 2. My Neurocognitive deficit seemed a rapid decline. It’s part of the story that helps me fight to go on, for my family, for you.
You have to hang on to you! It’s okay to not be perfect. It’s okay to not be your “yesterday”.
The struggle is real. We are who we’ve become. And it really is okay in all that it is. We might not like it, but we have to learn to accept it.
Perfection is all that you can achieve in the here and the now. Getting that shower, getting dressed, combing our hair. Those are the triumphs.
There’s so much worth in the smallest things.
I believe in you! Believe in you, too.
Thank you Barby Ingle for always believing in me and my ability even when I didn’t.
Lets try to remember to not pre-judge a chronic pain patient on appearance or preconceived notions, but instead, assess on diagnosis, and credibility. ~Twinkle V.
2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.
As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get the care they need, even if in this small way, so that they might have a better quality of life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.
Their adult world comes soon enough.
Each parent will choose their child’s options, they may even decide on something else along the way…
Any recognition for Megan, Tori and Gracie is much appreciated.
Kimberly Neff has Toxic Neuropathy that was caused by a work “accident”. Her story goes as this ““ Two years ago she was working as a security guard in a gate house for a residential community. When a worker from their monthly pest control company came out to spray for ants, she showed him some video footage where ants were coming from the air ducts. So, he decided to push the attic door open and just fill the attic with pesticide fog. He told her to leave both doors open, and that she should be fine: Now Kim is in a wheelchair, she can’t walk on her own, she’s lost most feeling in her legs, she sometimes loses control of her bladder and bowel functions, she has neurological problems and people treat her differently. Kim is currently on 18 different prescription medications/lotions/patches and she is still waiting on Disability for assistance.
The above has been altered from Kimberly’s own words.
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.
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)
After the conference we popped the pain out of ’em! #painPOP
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
RSD Advisory- Where Chronic Pain & Depression Collide 