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  🙂

 

 

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Work Comp, Denials, Delays and Dangerous Outcomes

Just last evening I got back on the medication that should have been filled January 4th, 2015.  On January 9th, I received a modification approval through PRIUM quoting reasons for denial using the California MTUS.  Two of the medications were available for pick up on Monday January 19th. One was a modification and reduction of Duloxetine, the other an Anti-Seizure.  Both of these medications warn that patients should not abruptly stop them. Cymbalta/Duloxetine withdrawal was so bad that I couldn’t see straight, literally. I saw lights flashing before my eyes, instability, rapid heart rate, a rise and fall in blood pressure and I heard sounds in my ears, head? I felt as if I was dissociating from myself. Bouncing in and out of my entire being. I only take one actual pain medication. On the 4th when they all should have been filled. I was still okay there. On the 8th, I had a Lumbar Sympathetic Block that seemingly failed due to the Duloxetine withdrawal state I was already in. I was already off the Anti Seizure as well. I removed my patch on time 3 days later. I knew I was heading into another withdrawal. This medication was approved on the 9th also. It is a partial agonist and partial antagonist.  It was still not made available to me. None of them were. 2 of the medications will not be filled at all, anymore. At this time I am coming off another that helped me greatly over the years, but which I will no longer get.  In addition Lidoderm will no longer be approved. It has not been easy.  Last night my patch, the lowest dose of its type was finally put back on.

I know what Lidoderm was originally classified for, yet it seems a little odd to take away a patch that eases nerve pain in targeted areas. Especially when the indications for Shingles is post use and not during break out.

Cost, I am sure!

What is important to point out here is that if the insurance or adjuster has an idea that medication will not be filled for any reason notify the patient or provider before hand.  Give opportunity to properly reduce to avoid side effects. I could have seized! I may have and just don’t know it. Nausea, vomiting, dehydration from not being able to keep liquid or food in was also most unpleasant.  Edema, myoclonic jerks were in an uproar. I had respiratory depression and ended up with flu and cold like symptoms which still exist. I couldn’t lay down and I couldn’t use my Auto Servo Ventilator during the worse of it because of its unique ability to force me to breathe. I coughed uncontrollably. My chest is still heavy.

I do not mean to place myself in another category than other’s on Worker’s Compensation. However, my claim is closed with lifetime medical. My rating above 70 percent was issued in 2008. So how do you determine who is entitled to what and when? Or are none of us entitled at all? New claims, old claims, open claims? We seem to be at the mercy of someone who holds our lives in their hands. I seriously want to learn more! I would appreciate honest answers, but I don’t expect a single one.

We should not have to go through this because someone somewhere is sloppy in their own duties. So what do we do? What are all the patients who are being effected by similar issues suppose to do? Every time I’m denied for a procedure it’s overturned and approved by a medical professional. Why is all the money spent to deny and delay instead of treat in the first place? You speak of high cost in the Work Comp System, oh yes, I agree! While our awards are sitting in an investment account, paid out in bi weekly portions, you get the interest we never see. And then some of you show us your new multi-million dollar buildings and all we want is access to care.  If I had gone to the hospital it would have been initially assumed I was an addict drug seeking. I already know this because this is the position many of you have placed us in.  An immediate assumption, no presumption, no fact or basis for the pre judgement.

Discontinuation of Treatment with Cymbalta

Discontinuation symptoms have been systematically evaluated in patients taking Cymbalta. Following abrupt or tapered discontinuation in adult placebo-controlled clinical trials, the following symptoms occurred at 1% or greater and at a significantly higher rate in Cymbalta-treated patients compared to those discontinuing from placebo: dizziness, headache, nausea, diarrhea, paresthesia, irritability, vomiting, insomnia, anxiety, hyperhidrosis, and fatigue.

During marketing of other SSRIs and SNRIs (serotonin and norepinephrine reuptake inhibitors), there have been spontaneous reports of adverse events occurring upon discontinuation of these drugs, particularly when abrupt, including the following: dysphoric mood, irritability, agitation, dizziness, sensory disturbances (e.g., paresthesias such as electric shock sensations), anxiety, confusion, headache, lethargy, emotional lability, insomnia, hypomania, tinnitus, and seizures. Although these events are generally self-limiting, some have been reported to be severe.

Patients should be monitored for these symptoms when discontinuing treatment with Cymbalta. A gradual reduction in the dose rather than abrupt cessation is recommended whenever possible. If intolerable symptoms occur following a decrease in the dose or upon discontinuation of treatment, then resuming the previously prescribed dose may be considered. Subsequently, the physician may continue decreasing the dose but at a more gradual rate [see Dosage and Administration (2.7)].  Indications and Usage for Cymbalta ~Drugs.com

What is also interesting is that while both my provider and I was told by my Pharmacist that my Rx’s were put into the inactive file and that there was nothing they could do, when the first 2 were picked up on the 19th, the info on the bottles are back dated to the 15th and 16th. That’s wrong! That is not when they were filled. I have kept the receipt/dated of when they were picked up.

I will not name the Pharmacy as I have always had a great relationship with them. So while I continue to withdrawal from one medication, and try to re stabilize from those that had been removed, modified, approved and denied, I can’t help but wonder when the solution is coming to fix a broken system that doesn’t only affect me but millions of injured workers through the States.

As the prescription drug epidemic continues to fuel, let me also mention that slam dunking people off medication has them consider alternatives they would have never considered before.

You make some people become the person they never were. Before you jump to conclusions I beat this! I am beating it! I did not turn to alcohol, I didn’t seek out pills, I did not do what you could have pushed me into.  Suicide increases more and more each day and will become the next epidemic. No one cares to see that part. No one cares to listen enough. Even those that reach out are left hopeless. This isn’t just about Work Comp it’s about access to care in the chronically ill intractable pain patient.  If treatment was offered early, progression of injuries, disease and pain could be controlled instead of becoming out of hand.  Some people with diagnosis’ like mine would even have the chance at remission! Wouldn’t that save billions of dollars?

So I have to wonder if anyone really wants to change anything at all.

We’re not victims, I play an active role in my own pain care. My physicians are just another tool in my tool box of modalities, spirituality and assistance to help me survive and have some semblance of life.

So what do we do, and how do we do it?

I’m all ears.

 

~Twinkle VanFleet,

Advocacy,  Power of Pain Foundation

 

 

 

Now I Lay Me Down… (An RSD/CRPS Poem)

Poem Now I Lay Me Down by Twinkle Wood VanFleetThis poem is dedicated to all my RSD/CRPS brothers and sisters. It was written only a few months ago. For many years I had a popular poetry site called Golden Rainbow Poetry and became Golden Rainbow Poetry Creations as it evolved. I had a small business license back then under the same name.

Many of my poems have been lost, some have been found and others are hopefully backed up on a drive I have not located yet. From my earlier years of writing there is a journal type book somewhere that has dozens hand written in. I am hoping it is in the garage in a box.

Soon I will begin to share the ones I do have available. Some have been published in both hard print and audio, in hard bound compilations of 100’s of poets together in 1 book, 4 of my poems live inside those, others on various internet sites. I wrote a poem for 911 that is on audio. The project was published as both hard bound book with an audio CD, mine made it to the audio part.

Each of my poems have a mood, some in imagery that leaves the reader to wonder the meaning and also to connect with the words themselves.

Some of these poems could come from the reader themselves. It could be anyone, anywhere and at anytime.

It is still Nervember (November) National RSD/CRPS Awareness Month. I hope the poem above brings a bit of awareness to those who can’t seem to grasp the meaning of RSD/CRPS. Or… What it feels like.

A special thanks to Barby Ingle, Trudy ThomasChris Greulich, and the Power of Pain Foundation.

Thanksgiving is less than 2 days away. I have much thanks to celebrate. Especially for the having the very best husband in the world, my children, grandson and the fire in my flesh and bones I survive however hard.

I am thankful for those friends mentioned above.  I am thankful for my mom, sister and extended family. I am thankful for being here to help others, I am thankful for those who help me.

Happy Thanksgiving!

Always be as well as you can be

Wishing each of you pain eased days and nights…