Cross-Posted from Pages yesterday to this blog. Reference at the end.
Why The Apology
Life is precious no matter whose life it is. I let my pain, our pain, nudge me to one side more than to another. Just like they did. They? I know! We separate ourselves from one another and we shouldn’t.
Opioids, addiction, loss of loved ones in life or death ended up with the development of the CDC Guidelines. The recommendations. This led to the current affairs and even our President declaring an emergency over it. It influenced further lack of care for even compliant pain patients and has caused more suffering.
The many who believed in over prescribing and the opioids being an epidemic couldn’t see or didn’t want to acknowledge that there are other people in the world who would end up losing, too.
By reducing and removing these analgesics without a plan in place to substitute relief the quality of life provided by these medications would lesson and some people would end up choosing suicide, and many would live with the ideations not knowing how to go on.
I suppose in it all our selfishness as human beings to want it our way disregards the need of others who aren’t us.
I’ve been selfish too.
We end up fighting for our causes, creating campaigns, starting movements, staying steadfast in our agendas which are in a sense born of pain in one aspect or other and then we blame each other.
I still believe that we all have choices and that responsibility for those choices should be on ourselves and that we should accept those consequences.
Addiction, any type of, is a mental health issue. I’ve learned that the impulses that drive people to do what they do are no longer their fault once they reach the point of losing clarity. to make proper decisions. I understand better that when the point is reached where the mind has become so weakened by the addiction that the ability to make the better choice for themselves fails to exist.
I had taken this year for me. For my healing. I’m still healing and progressing.
I wish for all of us that the new year gives us all a new chance to heal from our pain whether in body, mind, or spirit and that we can all find peace in pain.
If I had anything worth betting, I’d bet that many of the documented opioid related overdose deaths were suicides.
How dare I say such a thing? Because in either circumstance the people who should have known better, didn’t. Why didn’t they know? Because they didn’t want to.
No one wants to acknowledge that their child, spouse, parent or partner has a drug problem or is at risk for misuse or abuse and no one wants to believe that even those who appear the strongest, laughing, joking, caregiving, keeping it together for you, would ever take their own lives.
A person seeks medical care to gain something; pain management, acute or chronic, or to manipulate for medications they don’t actually need, but want.
Some people fall through the cracks of not only the medical communities, unintended consequences, access to care, emergency services, but families, too.
I’m not sure how I should present this. Do you want it kind, sincere, and respectful, or do you need it blunt, open and firm? Do you want it me for you, or you against me, us? Do you want it white or black? Love, care and light or a little profanity to remind you that the world isn’t one way or the other?
You can judge me, you already have. Maybe you need something to judge me for. I refuse to allow you to add me to any negative category. I’m not a little kid anymore and I won’t be silenced because you think your ideals are above someone else’s. I’m heading on 50.
I’ve been on and off opioids since I was 22. Just because my life sucks and I’ve dealt with surgery after surgery, procedure after procedure, diagnosis after diagnosis, and I’ve been intractable for 15 years doesn’t mean I chase the pain to get the medication. I haven’t. There has not been a single time that I went seeking medication I shouldn’t have. My random pee tests are clean and prior to ever being injured my work took my hair, follicles that went back a year for drug testing. And while it’s none of your business in situations like this, where the anti opioid groups are stead fast against that kind of pain relief, I’m compelled to tell my business to justify my reason for taking it and the reason the physician prescribed it.
My pill is my SCS Spinal Cord Stimulator. It has been since 2006. I use a single low dose partial agonist and partial antagonist pain medication. There is no high. I take nothing for break through. I take Zonegran 100, 2x and Cymbalta 30, 1x. Nuvigil (Sleep disorders- Central Sleep Apnea with Cheyne Stokes, + Obstructive. Mixed/Complex/Auto Servo Ventilator (ASV) and maintenance for high blood pressure, Lisinopril, Hydralazine and Lipitor. There you go, now you know it!
If you’re a physician you have to know that blood pressure can be compromised by pain levels. Well.. at least that is what I am always told by physicians unrelated to one another, my blood pressure is too high because of physical pain.
Interesting right? Maybe not.
Dr. Andrew Kolodny replied to my post on Twitter, stating, paraphrasing, not a direct quote, education and personal responsibility doesn’t make opioids more effective or deter abuse.
Really? Then why is there a CDC work group to attempt just that? I’m not going to go into specifics because you can all find it for yourself, and I’m not going to give the run down of the call because it’s public record. I was on that call. See the Federal Register.
One physician shared that she prescribed not knowing? For real? You didn’t know with your education and training that prescribing opioids were… .um opioids? (Where was your education and common sense on that one and if you weren’t educated as you claimed, why didn’t you seek it for the benefit and well being of YOU and YOUR patients) Okay, so… that was your attempt to show the call how horrible the opioid is and minimize PERSONAL RESPONSIBILITY. Backfire!
Education is crucial. Point made.
Hate me yet?
Dr. Kolodny states that personal responsibility doesn’t matter. Really Doctor? That’s a lie! Because when someone falters you, yours or someone you’re advocating for it absolutely matters.
My nature is to say I’m sorry, I’m sorry for all of you who’ve lost. Lost to addiction, and death. But I cannot be sorry that I’m fair, even, and compassionate for the suffering AND regardless of what they are suffering with or for. hm, well I don’t want to call persons weak, just unable to hold back heading for another, whether it be a chemical hook or simply choice.
Is it bad word time? For fuck sake be responsible for you and yours! If your child was a minor at the time of receiving medications that turned out to be harmful, you were responsible. You, the parent, or guardian! If the child was an adult of legal age in their jurisdiction, they are then responsible. And.. parents know better than anyone, more than a physician, more than a pharmacist, that something is up or wrong with their offspring. Minor or adult, we know, and if we claim we never did we’re not only lying to others but we’re deceiving ourselves. If you never saw the signs? Ouch, you just didn’t care to look for it. And if you couldn’t see it? Have a little compassion, how could you ever expect the doctor to see it? Because he is a doctor? Not true, we’re parents. 15-30 minutes a doctor visit at best compared to our lifetime with our kids. Minutes upon minutes, hours, days, weeks, months, years.
Hate me yet?
If my child went to the doctor, claimed pain, and I don’t even care at this point in writing this if the kid was in pain or wasn’t, but took the Rx, filled it, took the medication as prescribed, misused it,…and then decided to throw back (you know, toss some alcohol)
My child is to blame. Not the physician! We seek care from doctors, they do not seek us out. We tell them what we tell them and they base the prescription of the truth or shit we give them. We do not have to take that Rx to the pharmacy, we do not have to fill it and we certainly don’t have to put it in our body. It’s not fair to call them pushers. How can they push, when a person went to them? A pusher is someone who seeks another out to push a drug on them.
Does it even matter after all this if the medication was taken as prescribed? Nope! Because the only way to overdose is to misuse. If the doctor prescribed a medication adverse to another medication the patient is already taking I would be advocating for you and the error. Dang, I feel bad for back hands I’m going to get for this, but doesn’t anyone get it?
Maybe no mix, maybe no alcohol, great! Good job! Still the only way to overdose is to misuse unless another adverse complication was present.
I’m disgusted by a world that rather blame someone else than accept the consequences of their own actions. Oh and yes I’ve been hurt. Damaged in fact from other’s irresponsibility and I do advocate for that change but I don’t harm others on behalf of myself.
According to Dr. Kolodny, personal responsibility doesn’t matter. Does this apply then to vehicles, officers, surgeons, pilots? I think I know his answer, of course, but he’s already let them off the hook. And hey that’s okay! After all, why should anyone be responsible for anything they do. Blame it on the traffic, the felon, the patient, or the passengers.
Contrary to what it may seem, I do respect the Doctor. I’m not inclined to agree with his adamant perception of placing all people who use opioid relief as addicts, or heading for addiction. Sorry, don’t care what a few images of the brain or a poll might indicate. There’s billions of people in the world, millions on medications, and a fraction to insinuate possibility or potential from dependency to addiction.
Pain in general causes advocacy. Loss instigates the passion to make a wrong right. So while chronic pain patients are being punished, ridiculed, humiliated, stigmatized, belittled, what about your pain? Your mental pain urged the controversy against opioid managed pain care versus loss of livelihood.. Ours is physical, yours is mental and emotional.
I have a hard time understanding why any of you care what we take when you won’t be there if we overdose or commit suicide. You’re not there to tell someone striving to make it, good job, proud of you. I have a hard time being used to make your point and profits.
I have a hard time with you looking down at us, when you don’t even know us. You don’t even want to walk in our shoes to feel us. But you want us to walk in yours and feel you.
Maybe, instead of saying “people” which implies all (It is the plural form) how about some, many or most (in your opinion) otherwise you are separating us from you. You make it as if everyone is horrible, addicted, heading for addiction, stronger meds, etc. Everyone but you and yours (your groups).
Then we speak out and you become holier than thou against us whiny, complaining, lazy, drug seeking, pain complaining “people”.
Guilt is the hardest human emotion to overcome.
All we had to do was work together, all we had to do was listen to one another. We could have cared for each other. And in the long run, the children might have truly been educated to know better.
When we get a physician as Dr. Kolodny implied stating education is meaningless? I have to disagree. Education educates, I’m trying not to roll my eyes because he kinda dummied himself down on that. No disrespect intended.
You may dislike me, think I’m a b*tch, judgmental, or talking too much (not true, you’ve already judged me/us… and quite vocally I might add, news, columns, etc ) and I’ve only just begun, but…
I still love all of you and would fight for YOU if no one else did.
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.
If I had anything worth betting, I’d bet that many of the documented opioid related overdose deaths were suicides.
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 