Over

In the last week I’ve shared about 6 video’s in the raw. Unedited, me without make up, me with make up, me just going on about the last few months or more, blah blah.

I made it 15 years. I made the last 10 with SCS, medication and functional restoration and the last 4 by medication management, SCS, and home functional restoration enough to help me set goals and achieve them. Sometimes it can really take time to get unstuck from the pain cycles, the why me’s, sulking pity party. I busted my butt, learned, wanted to learn, and aside from a patient, I’m a caregiver too. Hard? It has to be done.

So many times I’ve had to alter my list of the 3 most important tasks needing done in a day. I’d move the least important to the top of the following day’s list. All those little tricks and things I’ve learned over the years that hang out in my toolbox of survival mechanisms.

I knew it was almost over. I just never imagined it would be by the hands and decisions of others/provider’s before giving up of my own. I just didn’t think…  of all the thinking I do that my award also became part of my end. I worked hard for that. Decades for that. Unpaid for that.

Spontaneous? Not really. I messaged my mom to have my Advanced Directive revoked and destroyed. I’ve tried to and I haven’t been able to get them back. It was Valentine’s Day, I called the radio station The new STAR and dedicated a song to my man. I’ll hold back on that song title right now. I took the last walk I ever thought I’d walk. It was long and hard, and I had to sit on people’s lawns or lean against trees or mailboxes and it was really only a little farther than end of our block.

Am I a quitter, a coward? Perception.  A quitter and a coward would have never rolled into those headlights, but let’s be fair, I haven’t quit yet.

I was already in withdrawal, unstable, but woke up to a nice day. It was all good until I re read the first denial letter stating those 2 medications (Cymbalta and Zonegran) weren’t medically necessarily and not supported by the California MTUS (Yes they are). It also claimed that due to the doctors report it was left to interpretation on a couple of matters and one of them was that those 2 medications didn’t reduce my potential for abuse or minimize my current opioid use. Seriously?!!

I appealed and I won. No potential for abuse or misuse and both medically necessary.

Approved on appeal February 16, 2016.  I’m still not on them, nor am I on any pain reliever at all.

I can get through the 7’s, bouncing 8’s and 9’s. I can use my tools to bring those 8/9’s down enough to level myself. I couldn’t handle the 9/10 I couldn’t bring myself out of it. The physical 9/10 that can make you lose your mind. Why? Because it’s in your mind where you’re coping abilities and strategies are.

Already living in your head all day just to manage your 7, see what happens when 10 comes and there isn’t any help. I’ve rarely used 10 in my entire life, I seldom use 9, except to acknowledge it gets there off and on throughout any day for seconds, minutes, hours.

10 though! I drank that bottle, intoxicated, drunk, I could care less about labels because I hit the ground on my stomach and face so hard I passed out. Somnolence, narcoleptic episodes (diagnosed) or alcohol, perhaps a combination of each. Though my husband said he dropped me as I was leaning against him.

I walked out of our gate and stood against our lamp post. Husband came out and told me to go back inside. I wasn’t doing anything but standing there, reflecting, thinking, but then…

He started grabbing me to lead me in and a lady called the Sheriff’s Department on him for abusing me. He wasn’t, but he was in my space and I just wanted to chill. I was sure to tell her that he didn’t hurt me, beat me, abuse me and that I was fine. I was. I think.

Our street, people drive down it like there is no road and a speed limit doesn’t exist.

That was my out! I laid down in the center of the street, spread my arms and my legs as best as I could and I could see headlights flying right for me. Am I mad I was pulled out of the street? A little. Why would I ever think to let a driver be responsible for killing me. Well how about this, slow down and do the speed limit. Everything is a learning experience.

The unbelievable inaccuracies in my medical records are nearly beyond fixing. Medications listed I’m not even taking, and a few for more than a year. I’ve updated again since my release and tonight I peeked at my Patient EMR. They’re all still listed. So the medications go on the record, but they don’t come off? There’s a difference between previously taken medications (inactive) and medications currently taking (active). It say’s I’m on 11 medications including 2 opioids, a benzo, oic med, lidoderm patches, cymbalta, and zonegran and I”M NOT!  Lisinopril, Hydralazine, Atorvastatin and Nuvigil. That is what I’m on. 4 medications. Red flag above 7, did you know that? So yes, I’ve been red flagged and it’s flying the wrong way.

I’m sorry to the Sacramento County Sheriff’s Department, the Metropolitan Fire Department and the EMT and probably ambulance driver too. I didn’t trust you.

When you asked if I was in pain? I told you I wouldn’t tell you even if I was… Because… I wasn’t going to have in my record an opioid pain reliever documented as given to me. Yeah I suffered and I suffered for not being truthful. I’m learning though that truth and honesty is just someone elses made up lies. Unfortunate casualties of the world we live in.

To the Officer that lacked a little faith, I pray I left you with something. Heart! Have a little faith that sometimes not everyone is who the rest of the world made us out to be.

I’m not sorry for the actions that led to my consequences or my responsibility in it. It’s forever now.  I’m glad I screamed all the policy issues going on and made it loud and clear for blocks. I’m sorry for all those who played a part and either bailed or covered their own asses. I’m sorry for all those who think relieving pain leads to misuse, abuse and heroin above the overdoses that are self inflicted one way or the other.

Who ever thought it’d be me? No one!

Courage - Your fear

Goals? Get my lyrics out to those who’ve been interested and play that part of a lifetime. Really though, I’ve already done everything I wanted. From Poster Girl to TV Commercial, being published by my 20’s, being a part of Sacramento history in the news, hard copy, on the news live, iPain Foundation, my own endeavors. All in the background from my space, my cubby.

I’ll either fly off this earth by the grace of God, or by my faith in options. Take that as you will. I’ve had to choose, make choices, decisions, options to save my own life. My own!

Still not what you would simply assume.

I don’t hardly care about much right now because I can’t fix me enough to put in the few hours a month I had been to help others. I’m numb and it’s not the numb I wish it was. It really is easy to rectify wrongs, accidents, mistakes, oversights, correct errors and be responsible for your own actions. It really is easy to do. The only reason someone would choose not to is to hide their own guilt and be unable or against a face to face with you in the presence of a sit down meeting with lead staff for a reconciliation. I feel bad about that and I shouldn’t because I did move to rectify and was denied. I was even denied the 30 days of “emergency care” allotted by law when being dismissed by a provider.

I am grateful for the person who provided LLLT and Bowen Therapy yesterday. Bowen might take a few more times. LLLT I’ve done a few times before. The only “maybe” for months.

Really though, my problem is that I care too much but I think that’s been back handed out of me. None of this is finished, some has only just begun and the rest well…  it is what it is, for now.

Over and…

out.

 

The Body, Mind and Spirit; Humanizing the Soul

https://rsdadvisory.com/2016/02/11/the-body-mind-and-spirit-humanizing-the-soul/

It Really Hurts to Hurt | Live On. Give On.

https://rsdadvisory.com/2016/03/20/it-really-hurts-to-hurt-live-on-give-on/

The Unintended Side Effects of Fighting Prescription Drug Abuse by Twinkle VanFleet

The California Progress Report January 8, 2015

http://www.californiaprogressreport.com/site/unintended-side-effects-fighting-prescription-drug-abuse

Bracelets; Lockdown; Profound and Letdown

https://rsdadvisory.com/2016/02/26/bracelets-lockdown-profound-and-letdown/

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Deliverance | Suicide

Deliverance

By Twinkle VanFleet

TwinkleV March 2 2016

March 2, 2016

Your secrets she carried them well

Your regrets, she could have taken to hell

 

Your confidences, she held inside so tight

Your lies she covered them

From pretend to spreading for headlights

 

She took the blames as her own

Most- right toward the gravestone

Taken for granted; abandoned

Alone

 

Your lies she hid to never tell

For your own rise, prizes and people

Drained, too much to hold onto

Take some? Not even a little

Except your own sins to confess at the steeple

 

Deceptions, other’s misconceptions, restless

Decisions; pained spirit, heart, body and bones

Liquid courage, that little bottle lured it

To breaking down glass houses and home stones

 

Upon the pavement

She spread her wings

Intent, mission served

Ignitions curved

Reasons observed, so well deserved.

 

Abide or suicide

Ignored,  no one to reach for

Many folks lost, blind to the signs

People are given up on for not enough time

 

Will swear to God they never saw anything blue

The beginning becomes the end,

Suicide ensues

 

Reaching out, passively pleading, Negative 10-4

Raining, blaming, scolded, but still loved them more.

Pressed, distressed, stressed, aggressed, led to arrest

51-49 and a half, leaped toward ridding someone elses mess

Deliverance, have you guessed?

Insist, persist, wouldn’t resist, did her best

Affirmative, 5150, tests failed, now you’re dismissed!

 

#StrongerThanPain

#CRPS #RSD #Suicide #Ideations #deliverance #5150 #poeticimagery

I truly am grateful for life, but not all tests and experiences are mine or just for me…

They’re yours, too.

 

 

Bracelets; Lockdown; Profound and Letdown

Cross-posted from February 19 at 12:43pm

In the early evening of Valentines Day, February 14, 16, I was placed in handcuffs in front of my residence and transferred to ‪#‎MethodistHospital‬ psychiatric hold where I got to come home the evening of February 16th Initially, I was being transferred to another facility for a 72 hour hold and evaluation after the Dr. said I wasn’t a threat to others, but I was to myself. Upon re evaluation the afternoon of the 16th, the doctor via tele medicine (Robot) allowed me to go home. The bruises on my body (severe) are not self inflicted, but are the consequences of my actions. After being denied 2 types of medications I’ve been on over 10 years (non opioid, anti-depressent/nerve pain and an anticonvulsent, 2 others removed entirely and abruptly January 2015 and reduced from 90 to 30 on Cymbalta at the same time, being continuously delayed, denied, retaking these 2, being denied again, going through the withdrawals over and over and knowing how many of you go through the same or similar, I began to crack. Days prior I filed the appeal, the next day I sought psych help from one of my providers, but was never contacted back. Valentines day started beautifully. My husband set up our patio, and have a vase of flowers for me, coffee and it was peaceful. When I woke that morning, he said “don’t go back” referring to the bedroom. He said” close your eyes” I did. He led me to the patio, the best gift I could have been given. As the early afternoon and sunshine made it’s way in, I was updating hand notes previously taken on a legislative conference to send as minutes. I was listening to music. My emotions began to rise. I was upset that I couldn’t be there for Barby in the loss of her dad, or my mom who’s doing all she can to keep her heart beating, or my dad, or my children, even my sister. I saw that denial letter again as I was highlighting the inaccuracies it contained. I tossed back a 200 ml bottle of vodka. To be specific the $1.99 bottle of Tamiroff (the cheap crap) 40% alcohol by volume. It wasn’t the cause of my actions, but it was the liquid courage to tell it how it was and how it shouldn’t be, however misplaced. I remembered what WC took from me, what I was manipulated into 14 years ago. Something that even possibility, chance or a cure can never bring back and I realized how absolutely stupid I was to listen to my health team at the time. See? I’ve learned and I’ve grown since then and while now I have to tread carefully, I refuse to shut up for me, or for you. And I remember that when my case was initially force closed in 2003, I asked for 1 thing. Just one, and whether my 3 know that or not, I submitted it in writing. I asked for them to apologize to my children.

They’re still waiting

I stood in the street and screamed everything we go through. ‪#‎Chronic‬, ‪#‎IntractabIe‬ ‪#‎Pain‬, ‪#‎CRPS‬, ‪#‎DWC‬ ‪#‎California‬ ‪#‎MTUS‬, denials and delays, I screamed that if you take an opioid, tomorrow you’re defined an addict If you have a drink, guess what? Now you’re an alcoholic. I screamed that records should be maintained accurately and that I was DONE! With irresponsible people fucking up responsible lives. Was my act responsible? Perhaps not, but the cause and reason was.

My tongue was foul.

When I attempted to advocate for myself, speak of compassion and understanding, humanizing people for all, and reveal what I do and that I wasn’t blind to it all, I was considered hallucinating, fabricating, making it up, laughed at, demeaned and ridiculed. Being kind, caring, loving, understanding, respectful, honest, and trustworthy has got me no where. Incline my head to the higher ups as if they’re right, when really I just don’t have the guts to advocate on my own behalf and tell them they’re wrong.

A person (and patient) who’s done everything right has labeled me, defined me, and stigmatized me as someone who’s wrong and who’s done everyone wrong.
They wouldn’t even give me my SCS controller to turn off my stim. Flat increases stimulation. The nurse tried to give me some line about, not right now, she didn’t know what I was talking about, so I tried to tell her. Being dismissed from that made me see even more red, I called her stupid and told her to f off. Then I apologized because even in my upset state, I had the mind to know it really wasn’t her fault, she was just ignorant and uneducated.

I won’t be tolerating inaccuracies in records, healthcare or otherwise. I won’t be tolerating patients not being able to add note to correct the record. I won’t be hiding away under the blankets anymore, while people create their reports to satisfy their own job criteria, yet leave out pertinent information. I’ll be up to make sure you know you better get it right. And that people deserve truth about all else.

I’ll be sharing this story in it’s entirety, there’s so much more than this. My records, PRIUM, tox screen, etc are being sent to the International Pain Foundation. Via iPain someone gets the exclusive. I’ll decide free or fee. Oh and I got on the inside in all of it, now I know what goes on behind those scenes and those doors. I supposedly blew a high alcohol level. But here’s the deal. The bottle is still the same bottle it can’t magically become something else. The amount my body took in wasn’t more than that, I’m 200 pounds, so go figure. I’ve saved that little bottle as a souvenir. Excuses? Not at all. I’m not proud, but nor am I ashamed. My transparency will bring me back up, enough to prove, I haven’t lied, fabricated and I wasn’t on any illicit or illegal drugs which no one believed either.

On the contrary, the truth I’ve told and will tell
Will become me

(This is my #FightSong

… Take back my life song)

If I gave anything that night, I gave 2 things.

1. On command I removed my hands from my mama’s jacket pockets and complied without incident to place my hands behind my back. ‪#‎SacramentoSheriffsDepartment‬. Everyone should do the same in all situations.

2. I’ve given all of you the rest of my life; the one I can’t go back on.
My name is now associated with defiance and lock down.

Nothing else was considered
Sleep disorders, narcoleptic episodes
CSA (my brain doesn’t send the signals to my body to breathe)
Myoclonia
Withdrawal (probably over that by now, but the effects I’m still dealing with)
CRPS (Flare) + and an altered brain from the last 13 months of continuous WC hell.
CRPS (secondary depression, anxiety disorders, PTSD x 2 (diagnosed)

(excluded are internal diagnosis’)

My medication list has been updated each and every time I’m seen by my physicians. Yet, my discharge shows I’m on 11 meds, including Butrans, 5 and 10, a benzo and others. I’m on Lisinopril 1 x a.m, Atorvastatin 1 x p.m, Hydralazine as needed only, BP 180/+, Nuvigil daily, and BuTrans Patch/wk. ‪#‎DignityHealth‬ is linked to all my doctors. The hospital is part of Dignity Health. What’s the point of the EMR, PMP, PDMP or even a computer if it’s not properly used?

Understand why I kept saying “I’m fucking done” I’m done doesn’t equal I’m going to kill myself. I’m over it, doesn’t mean it either. I don’t want to be here doesn’t either. What they all are is some else’s perception and reality I could fart and my son would throw up his hands and say “I’m done!”

Check it out.. My voice will carry, I have the guts to say it, open eyes and touch hearts, contribute to change, maybe not for me, but hopefully for someone else

If I killed myself, I wouldn’t get to say it, now would I?

I’m sure they gave me Cymbalta, Zonegran and Hydralazine in the lockdown. I wasn’t suppose to be given any of those. Only Lisinopril and the Statin. No wonder my head hurts.

I have no regrets
I pray you don’t either.

To be continued…

Sincerely,
Twinkle VanFleet,
Advocacy Director, Healthcare Advisor, Consultant, Speaker, International Pain Foundation (iPain) powerofpain.org/leader-directory

Medtronic Ambassador medtronic.com tamethepain.com
Cureclick Ambassador cureclick.com trialreach.com
SPPAN leader http://sppan.aapainmanage.org
Legislative policy leader
Founder- CRPSA

TwinkleV Feb 23 2016 2

Twinkle V. February 23, 2016

“When no one else believes in you…
.. You better!” ~T

On the 29th of January, I put in for my Cymbalta (30, 1x) and Zonegran (100, 2 x). I went to my grandson’s 10th birthday party yesterday (sick) but I played it like it was something else, I played it off so good and to the point of… shrugs. Yah, slam dunk withdrawal again. Pharmacy kept telling me my doc hadn’t refilled. (A lie) If you didn’t know the truth, say you don’t know. Today I get a letter in the mail from PRIUM. Cymbalta and Zonegran denied. Last January, 13 months ago, I was removed from 2 other medications entirely (one of which was Lidoderm) and reduced from 90 to 30 Cymbalta. I tried. I faked it to make it and I prayed it and played it. but was slipping harder than anyone could ever see, . There’s 1 med left and I know it’s next. Nearly every month I’m delayed, the months I’m not delayed by days, I am by weeks. I’m sure my brain is fried by now. I’m sick all the time from abrupt discontinuation, to trying to re stabilize after getting back on, to slam dunked again. Over and over and over. Those medications aren’t suppose to be slam dunked off of. They aren’t suppose to be abruptly discontinued. They are suppose to be weaned off to prevent seizures and adverse affects that can in some cases include death. Their letter is a lie, it contradicted 12 months ago where it did indicate Cymbalta and Zonegran and now says the CA MTUS doesn’t indicate for the treatment of neuropathic pain. (wrong). It also said because I’ve been treating with a dentist and was ON Norco 5/325 that the Cymbalta and Zonegran didn’t keep me OFF OPIOIDS. A fucking lie. As of the date of that letter. I had 3 dentist appointments. And I suffered and declined med, even tho I took some. I also got permission from my PMD prior to ever getting an RX , filling it or taking it. I have not asked for 1 single extra pill and I didn’t even fill the Rx I had for days later. But know what? It’s a done deal now. TOWER ENERGY GROUP – SCOTT CORNWELL ADJUSTER ARROWPOINT CAPITAL. You might want to get your facts right. You expect us to have ours accurate, yes? Let me see here in 1 year approximately $15,000 a year in medication management times 81 years of age. I’m still only 47. I got your game, you better get mine, too.

This letter said that I failed Lyrica and Neurontin (the reason it now says NO to Zonegran, but that I didn’t fail Carbamazepine or Lamotrigine. You got me stuck on stupid. For real? drugscom says make sure to tell your doctor if you have heart disease, high blood pressure, high cholesterol or triglycerides;
liver or kidney disease; ALL OF THE ABOVE. I get it, compromise one side for the other right? Which really means lower your spending. Sorry idiots, I settled for lifetime medical and didn’t take your money. Go on keep punishing me. Neither of these are NOT indicated for me. I didn’t appeal your last denials (January 2015) and I’m not appealing these either. Oh and by the way, next time you put bull shit in my letters, CA fail first/step therapy REFER TO AB 374 and know that if you’re going to quote taking and failing, you better also note all else that goes with it.

Because I think you failed something else…

Yourselves!

The Travesty of Delays- California Workers’ Compensation SB 863 and AB 1124

https://www.facebook.com/notes/twinkle-vanfleet/the-travesty-of-delays-california-workers-compensation-sb-863-and-ab-1124/10153777634894774

CRPS/RSD and Suicide

https://rsdadvisory.com/2013/05/05/crpsrsd-and-suicide/

January 28 at 11:48am

@CDCgov ‪#‎CDC‬ ‪#‎BSC‬ ‪#‎NCIPC‬ RE: Today’s CDC Public Hearing

I would like to offer that in conversation this last week with Dr. Kolodny and others who advocate against the use of opioid pain care that I attempted to stress the importance of responsibility and education in stating that ”

“So much time proving how bad opioids are when we could have been educating, teaching personal responsibility.” (Twitter only allows so many characters)

A direct reply and quote from Dr. Kolodny

“Education & “teaching personal responsibility” will not make opioids less addictive or more effective.”

Already in today’s call responsibility has been spoken of as well as education several times. He came on and mentioned Guiding physicians. Isn’t guiding educating?

Other therapies can potentially be more harmful, anti depressants, anti seizure medications for the treatment of chronic pain, such as Cymbalta,
Neurontin, Nortriptyline, Amtriptolyne and similar medications also have misuse and abuse potential. When there is misuse, abuse and Overdose is already likely. Surgical intervention is contraindicated in patients with nerve damage, neuropathies, CRPS/RSD. Some of these opioid overdoses were in part due to other medications, mixtures and alcohol, not solely opioid. Integrated and functional restoration programs are important, but few insurances at all, cover them.

Can we try not to stress the decline in white people falling to addiction, when we didn’t seem to be as concerned about blacks, or minorities. many were like, oh well, let them kill themselves, calling them stupid. We’re your kids stupid? I think not. I find it disheartening.
People were people all along. Also personal responsibility is directly related to opioid overdoses. If these children or adults didn’t understand the risk, or what the medication may cause, then education was absolutely necessary by parents, family and spouses first and foremost before the medical community. It becomes a mutual responsibility. Not only the doctor who prescribed it.

If they can’t stop, it’s our responsibility to intervene on their behalf. and attempt to save their lives before it’s too late.

Pain is physical, and pain is emotional. Physical pain seeks quality of life, the emotional pain, those against opioid’s seek comfort for
their loss. Pain doesn’t discriminate.

Physiology also plays a major role in this topic. Lets not sacrifice people for people. Otherwise unintended consequences become intended
consequences. Responsibility in prescribing isn’t a one way street. We seek out the doctor, they don’t seek us out.

~Twinkle V. / Advocacy Director, International Pain Foundation ‪#‎iPain‬

Mid Metatarsal Separation | Lis Franc Separation

https://rsdadvisory.com/2015/12/21/mid-metatarsal-seperation-lis-franc-seperation/

Chronic pain, opioids, addiction and controversy

https://rsdadvisory.com/2016/01/25/chronic-pain-opioids-addiction-and-controversy/

A Call for Action- 2016

A Call for Action 2016 by Twinkle VanFleet

https://rsdadvisory.com/2015/10/14/a-call-for-action-2016/

Overcoming Challenging Obstacles

Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet

https://rsdadvisory.com/2015/11/24/overcoming-challenging-obstacles/

(Several pages and paragraphs not included at this time)

 

Full details of this entire experience soon enough, including photos. —> Media, news, social media, video, radio, and and… and  🙂

 

 

First Week of February 2016 – And in Memory of Jim Ingle

 

My block helped nearly 2 weeks. I had the Lumbar Sympathetic Nerve block on January 28, 2016.  I had a reduction from a really hard 8 going in for the procedure to a 4 until a couple of days ago when it started creeping back up. L3 and L4 this time instead of L2 and L4. I was so grateful for this. That’s 40-50 percent of reduced symptoms. When I left to receive that amazing award my medication had been delayed yet again. I was a week without already. My block only covered my right lower extremity so 4 means only that which was blocked. I’m still working on a post to share the Bakken Invitation Award experience. I almost left it all behind and I almost didn’t make it through once there, but I did, and I did. The block eased the flare I left in and came home with, allowed extra midnight snacks for the man, dinners, cleaning, sharing, a little catching up. That really is everything it could have been. I don’t count what I didn’t get from the block, I consider each symptom I get relief from. That allows me an over all number, fairly. I tend to be conservative with the pain scale. The time it lasted wasn’t what my insurance wants to approve it again, but it lasted long enough that I could catch my breath again. Since many don’t want anyone on pain reliever, options are minimal for most of us. Not every option is available in every area and not every option is covered by insurance, therefor, we’re stuck in a trap. I’ve already fallen twice in the last couple of weeks. Staying up on my legs is becoming a another risk. I take so much Ibuprofen for inflammation no wonder my liver is a mess and I need to water my kidney’s in excess to keep them flushed due to diminished function. I didn’t get back on my medication until the 10th day and the night after returning.  Had I not been in a flare, or medication delayed, my block may have helped better. The body trying to recover itself from a sudden change and in a sense shock. The inflammation and swelling was horrible. I had my mouth repaired soon after my block. Still a process there. I didn’t have the grafting done even though the bone damage in my face is an issue, too. I fell asleep 4 times today, just worn. I’m charging my SCS right now, so that I can give me a nice goose me up and numb me down.

Movie time.

February 4, 2016

I fell asleep before posting last evening and woke to learn of a heartbreaking loss.

It is with great sadness that Mr. Jim Ingle, Barby Ingle ‘s dad passed away this morning. Without Mr. Ingle, the International Pain Foundation (Power of Pain) wouldn’t exist. He lost his battle waiting on a kidney transplant and other life saving procedures. He fought for himself to the last second, reaching his son’s home in his own vehicle, even after crashing it, where he passed away with his son and first responders before ever reaching the hospital. Mr. Ingle didn’t have a phone to call for his own help, the family was trying to have it replaced promptly which also never happened in time.

Photo is Mr. Ingle presenting the Melanie McDowell Award to Dale Lehn 2008 recipient.

The Power of Pain Foundation (International Pain Foundation) presents the Melanie McDowell Pain Awareness and Advocacy Award annually. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy pain conditions. Nominations are solicited in the pain community for people who are making a significant contribution within the field of research, education, awareness, or patient assistance. http://powerofpain.org/mcdowell-advocacy-award/

My heart breaks for Barby, and her siblings, who also lost their mom last year. I’m so grateful that I’ve been apart of IPF POP long enough to have been on conference calls with the man himself. Godspeed Sir. Thank you for all you’ve given, all you’ve fought for and for starting this organization in honor of his daughter Barby and memory of Melanie.

 

Jim Ingle preseting the 1st Melanie McDowell Award to Dale Lehn 2008 2016-02-04

Mr. Jim Ingle presenting the Melanie McDowell Pain Awareness and Advocacy Award to Dale Lehn, 2008 recipient.

 

I don’t generally solicit donations, but in honor of the man who not only brought “Power of Pain” to my life via his daughter, but ours, he’s worth it.

http://powerofpain.org/donate-ipain/   A gift can be made in his memory and/or honor – Jim Ingle

Thank you!

Chronic pain, opioids, addiction and controversy

Whale Watching Cruise - Beautiful

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.

That’s the difference between you and I.

 

I wish you all well,

And enough.

~Twinkle V.

 

 

 

Power of Pain Foundation: Seeking Content Contributors

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.

Thank you!

Please email:  twinkle@powerofpain.org

Magazine in the subject line.

Deadline to apply December 16, 2015 unless otherwise updated.

A Call for Action- 2016

A Call for Action 2016

By Twinkle VanFleet

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‎Since 2012, the estimated rise in addiction and opioid related abuse was an astounding 26.4 to 36 million people throughout the world. The accidental overdose of prescription related deaths were 4 times the amount of similar deaths in 1999.[1] According to the National Survey on Drugs Use and Health, 70 percent of all people who abused prescription analgesics got them from friends or relatives while 5 percent got them from a drug dealer or the internet.[2] While most of the focus has been on patients abusing their medications we must not lose sight that the majority of these patients take their medication as prescribed. The  negative innuendos influence the positive conclusion that long-term opioid treatment does in fact give quality of life to not only cancer patients, but non-cancerous chronic pain patients whose pain cannot be controlled any other way.

In an effort to deter abuse and/or misuse in patients, family, friends or associates, decrease the value in street sales, reduce the drug epidemic in certain populations, abuse deterrent formulations (ADF) are beneficial step forward in the diversion of the prescription drug issue.

OxyContin, Nucynta ER, Opana ER, Oxecta, Embeda, and Targiniq each contain abuse deterrent formulations (ADF) or tamper deterrent formulations (TDF). The most common form of abuse is by swallowing the medication. Other forms are chewing, swallowing, snorting, ingesting, inhaling, and injecting for the fast acting euphoric effect. Naloxone is a narcotic that reverses the effects of other narcotic medicines and can be used to treat drug overdose in emergency situations. Naltrexone hydrochloride blocks the effects of opioids by competitive binding (i.e., analogous to competitive inhibition of enzymes) at opioid receptors. Naloxone and Naltrexone are both opioid antagonists and each conclusively block the body from experiencing the opiate and related endorphins. This occurs by binding of the opioid receptors with higher than affinity than agonists, but do not activate the receptors.

TDFs will protect people who decide to modify the medication’s original form by removing the opioid for prompt use and abuse. Otherwise, extraction acts quickly and the time it takes to produce its effects can be immediate.[3]

ADF’s contain ingredients for safer distribution. Patients would continue to receive the management of pain and physicians would be less likely to stop providing access to pain care.

Not all patients should be diverted to ADF or TDF by their physicians. Patient Evaluation and Risk Stratification should be utilized to mitigate potential risks. Pharmacies and insurance companies should not be allowed to replace an Abuse Deterrent Formulation prescription opioid for a similar generic non ADF opioid. The prescription drug abuse issue has brought an adverse impression onto honest patients with incurable and intractable chronic pain syndromes and diseases and has left some pain professionals feeling perplexed.

With the continued development of these safer opioid medications we are contributing to the future of better health and pain care practices. Pain patients must remain a high priority in the midst of the current and ongoing concern that prescriptions will likely be misused or abused. It is imperative that patients be assessed on an individual basis and not as an assumption to the status quo.

We must find a balance that separates patients who truly need opioid medication to live productive lives and those who are abusing them. Responsible patients should not be punished in an attempt to crack down on prescription drugs and opioid abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic intractable pain patients in mind.

Patients are being labeled for their chronic pain identity. In the last year or more they have not been receiving their medication management either by their physicians, insurance or pharmacy. In one instance, I was informed that a patient with no history of abuse was being referred to what seemed a drug rehabilitation program in order to get her medication. If she did not comply, she would not receive.

Another gentleman, previously prescribed Suboxone for pain management, now cannot receive opioid managed care because the information in his Prescription Drug Monitoring Program insinuates prescription drug abuse.

Steps need to be taken to ensure that notes are added to the PDMP/CURES database on individuals. Suboxone itself is only an implication without verification for what the medication was prescribed for.

On behalf of those who need, not want, but need medication to sustain quality of life, I call upon our legislative leaders to be proactive in this area.  Help stop the abuse without penalizing those of us who are able to live at least a modicum of life due to the effectiveness of these prescription pain medications.

Think about it,  as if you’re needing to… no! really needing to, begging to, ease your Mama. Close your eyes and imagine.

I call on you to not make any compromises for a standard not yet met.

  1. America’s Addiction to Opioids: Heroin and Prescription Drug Abuse. Nora D. Volkow, M.D. May 14, 2014.

Senate Caucus on International Narcotics Control. NIH National Institute on Drug Abuse

http://www.drugabuse.gov/about-nida/legislative-activities/testimony-to-congress/2014/americas-addiction-to-opioids-heroin-prescription-drug-abuse

  1. 2. Prescription Drug Abuse. Office of National Drug Control Policy

http://www.whitehouse.gov/ondcp/prescription-drug-abuse

  1. 3. Tamper-Deterrent Opioid Formulations: Who Needs Them, and at What Cost? Robert Twillman, PhD. Pain Practitioner

http://www.aapainmanage.org/resources/articles/tamper-deterrent-opioid-formulations-who-needs-them-and-at-what-cost/

Twinkle VanFleet, Sacramento resident, pain patient, Executive Board Member and Advocacy Director for the Power of Pain Foundation.

Written Thursday, ‎December ‎04, ‎2014

Updated Wednesday October 14, 2015