NERVEmber + Goals for 2018

In a Facebook post that read ‘

Goals for 2018
– Continue healing all aspects of myself.
– Continue to learn and utilize holistic remedies
– Continue post Gohl Method protocols
– Start off slow and end big.

 

I could have shared more because there is more. So much more I want to accomplish. Yet because of my inability still to commit, I left it at that. If the above is all I achieve, I’ve achieved it all.

I’ve spoken to several people after me who have been traumatized by the healthcare system. Traumatized in ways that isn’t the logo’s promoted for these services. Humanity.

There isn’t anything humane in treating people, patients so minimally that they feel worse after seeing you than they did when they sought your help. I don’t know for certain if it was the CDC ruling, or the President declaring an emergency on opioids but I do know for certain that inhumane attitudes, remarks, and accusations is not the definition of humanity.

I would have rather had a physician tell me no, dismiss me not knowing what to do for me than have had them assume I was someone I wasn’t.

I’ve spoken to people who did everything right in their care, for their life, and still everything went wrong. A person who is at the top of the advocacy chain, admired by many, and still was treated so poorly that trauma, PTSD has resulted.

Is there a word, a code, a safe word someone can use when we’re so serious about our pain, state of mind,  or knowing better for ourselves that we’re believed?

There wasn’t for me. I reserved that 10 my entire life. And when I used it I was thrown away.

Now other people are experiencing what I did. Prominent people. The only thing I had done wrong if it was even truly wrong at all was self medicate with alcohol after the facts, amidst the denials, delays, and incompetence. This person doesn’t do any of that.

My road is still long but I see an ending for it. I have a long way to go in healing but I know I will. I still have the diseases, syndromes and so forth but because I was blessed with MLT and my own determination, I’m alive.

I’m listening to the NERVEmber posts and as much video as I can grab before my comp shuts down from trying and I hear the people talk about their much needed, lifetime care.

I don’t have that.

Imagine a world with no care from western medicine for whatever reason because it doesn’t matter why. Just imagine you on your own for your life. For your pain relief and your well being. From your symptoms and your uncertainty.

If you can you might understand me. Because I’ve gone through it, I understand you.

It may have taken you a moment to feel me and why I fell so hard, but you do know now because you’ve went there too.

After my decline I asked for 1 year. 1 year to heal myself, progress, find me, learn me.

I thought I would be good a year later.  While my year began October 24, 2016 in a sense it begins toward the end of January of 2017.

It may not seem it from onlookers, but i have come far physically, mentally, emotionally, and spiritually.

I wanted to try to find my way back into some advocacy. for 2018. I don’t know yet.

I’m not certain yet because it isn’t always over when we want it to be. Sometimes it takes a lifetime.

All I know for sure is that I’ve been through and overcome obstacles that many believe aren’t possible.

Stronger Than Pain – Kurtis Ozra VanFleet

Medtronic INC

Arisen Strength – Shane Schulz

Gohl Method – Arik Gohl

You’re my only commitments.

 

I’ll try for you.

 

I start off slow and end big each and every day because I reach a new tomorrow.

That goal is my only priority. My ID isn’t just RsdCrpsFire for the fire of CRPS/RSD. It’s symbolic in living, thriving, the fires that be within ourselves. Passion. There’s always a duality in me.

I currently can’t talk right and for those who understood why I couldn’t 2 years ago, you might understand now. Otherwise, I won’t be sharing why.  Let me just say that if I do any voice, phone calls or videos that I’ll have a lisp. My sound, voice and speech will be altered. I’m okay with it. I have to be. This video doesn’t contain that problem.

Enough said. x

 

 

 

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Twinkle Vanfleet | 2015 honoree

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.

Read more-

Source: Twinkle Vanfleet | 2015 honoree

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.

Andrea Volfova

Prague, Czech Republic
Cardiovascular disease

Bhim Mahat

Kathmandu, Nepal
Cardiovascular disease

David Simmonds

Prince Edward (Wellington), Canada
Parkinson’s disease

Juan Carlos Hernández Corredera

Salamanca, Spain
Barrett’s esophagus

Kerry Kalweit

Pretoria, South Africa
Type 1 Diabetes

Lisa Visser

Orono, Minnesota, United States
Sudden Cardiac Arrest due to a heart defect

Qi Zhang

Beijing, China
Type 1 Diabetes

Sheila Vasconcellos

Rio de Janeiro, Brazil
Type 1 Diabetes

Dr. Thomas Okello

Kamapala, Uganda
Damaged heart valves due to Rheumatic Heart Disease

Twinkle VanFleet

Sacramento, California, United States
Complex Regional Pain Syndrome, Type 2

Vincent Browne

Galway, Ireland
Cardiovascular Disease

Tanya Hall

Melbourne, Australia
Cardiac Arrhythmias, including atrial fibrillation

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

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.

It’s truly an honor! Thank you Dr. Bakken!

To be continued

 

Review – West Coast Pain Summit: Advocacy, Access to Care and Neuromodulation

November 18, 2015

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.

Lynn Green, Twinkle VanFleet, Jacie Touart #popwcps #NERVEmber November 14, 2015 POPF 1

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:

<Begin>

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

  1. You have the right to accurate and easily understood information about your health plan, healthcare professionals, and health care facilities.
  2. You have the right to your choice of providers and plans.

 

  1. You have the right to emergency services. (Emergency department, urgent care)

 

  1. You have the right to take part in treatment decisions.

 

  1. You have the right to respect and non-discrimination

 

  1. You have the right to confidentiality. (Privacy of healthcare information)

 

  1. You have the right to file complaints and appeals.

 

  1. 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.

 

Twinkle V - #popwcps #NERVEmber November 14, 2015 POPFCaregivers: 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 ) ^

Introduce

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!

Introduce

Medtronic

 –

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.

<End>

#painPOP

#painPOP #popwcps #NERVEmber November 14, 2015 POPF

 

 

 

 

 

 

#painPOP #popwcps #NERVEmber November 14, 2015 3After 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.

Twinkle VanFleet, Lynn Green, Jacie Touart #popwcps #NERVEmber November 14, 2015 POPF 2Lynn Green Medtronic, Twinkle VanFleet #popwcps #NERVEmber November 14, 2015 POPFLynn Green – Pain Therapist, Medtronic INC (Medtronic.com), Twinkle VanFleet – Advocacy Director (powerofpain.org) and Jacie Tourart – PA-C, Spine & Nerve Diagnostic Center (spinenerve.com).

 

 

 

 

 

 

 

 

POPFLogoEmailThe 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.