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

Posted by twinklev

twinklev_onlygodcanjudgeme It’s been a couple of days over a month since I came home from that hospital stay. I can’t say it’s gotten any better, in fact, worse in that I’m also now 6 days off of the very last medication that provided any relief and the only opioid based medication I was on in the first place. Let me back track to pre Hawaii and the honor I received by being a 2015 Bakken Invitation Award Honoree. I was already struggling harder that maintaining my average 7 (on the pain scale). I was to depart on January 13th. A week or about prior I knew or believed at the time that I couldn’t make that trip any longer. I made a non scheduled emergency appointment with my Pain Management provider, who attempted to help me. I had only been using BuTrans 5mcg/hour. I was increased to 10mcg/hour for 2 months. When my husband got me to the pharmacy, my 5 was ready. I put in the Rx for the 10 and didn’t pick up the already approved 5. Trying to always remain in compliance and thinking I was doing right by not picking up the 5, yet instead swapping it out for the new 10 backfired. (why would I try to get them both? I didn’t. That wasn’t the medical plan to have each of them.

I’ve been asked how Hawaii was and I’ll always say amazing due the achievements while living intractable pain that got me there. I never laid out in the sun, or made it to the beach, I never got to visit the cabana, or see the turtles. I went to Hawaii but didn’t get to “Hawaii”. My husband had the privilege to spend time on the beach on 2 occasions and have lunch with an agent of Medtronic. I didn’t.

Energy Pennies!

Each of us honorees were there for living with medical technology that had given us “extra life”. Extra life that let us give back selflessly and the ability to “Live On. Give On. I actually live with other forms of medical technology. An Auto Servo Ventilator by Philips that forces me to breathe when my brain shuts down the muscle that allow breathing in Central Apnea with Cheyne Stokes Respiration, and the Obstructive Apnea I have with it. Otherwise known as complex or mixed sleep apnea. I’ve had 2 clips holding me organs together. The injury that led to my CRPS over 15 years ago was a severe separation of my right foot, chip fractures, and tendon displacements. Either referred to as a mid-metatarsal separation or a Lis Franc fracture.

While my husband went to have lunch with the others, I was getting ready for my filmed interview. It was a hard day for me. That same morning was my Whale Watching Cruise. Each honoree was gifted an event of their choosing among a few choices. I chose the one that didn’t require any physical activity beyond getting to and from the location to each boat transfer for the cruise. I tried to walk the length of the beach upon arrival to get to the boat landing and I did! But in doing so, I set myself back. I had to use ADA beach wheel chair transport on the way back. When we all got back to the Hotel my interview was already waiting. The trip took longer over all. When we got back to our room, I had about 30 minutes to get ready and I used 10 or more of them to get off my legs and lay down. The clock was ticking, I had to change, and do something with my face. I didn’t wear makeup to the cruise. My husband headed for lunch and I got myself to the interview and back. It was that same night that we were having our awards reception. When I made it back to our room after the interview, I rested for an hour or so. My legs were burning so bad. My right side swollen and discolored, my left side could barely take it from carrying me. I had to do another change and get ready for the evening. Neither of the dresses I took was I able to wear due to the mass amount of swelling. I wore a blouse previously worn one other time. (Embarrassing but not everyone knew that I had). I’m not in many of the group photos because of inability, but I’m grateful for the photos I am apart of with a few special people that bonded in love, laughter, crying, and hope. Tanya, fellow honoree, Andrea, fellow honoree, Andrew, photography, Rich, Medtronic, Emelyne and Darren.

My BuTrans was picked up the day after returning home on the 18th. I attempted to refill Cymbalta and Zonegran on the 29th. The pharmacy said my doctor hadn’t responded to the fax request. In reality they had been denied by WC and I just hadn’t known it yet. I appealed via my PMD. Approved by another IME as being medically necessary February 16th. I still don’t have them.

2 months prior I had gone through similar delay of weeks, and before that. Always and abrupt discontinuation of either days, weeks or in this case nearly 2 months for 2 of them.

Can you imagine what it does to someone’s brain each time you go from something to nothing. What being on an SSNRI and anti seizure for over 10 years, yet coping through the adverse effects of on and off over and over again?
Can you imagine physical pain so bad that you aren’t just complaining or trying live anymore because you can’t? Can you imagine pain so visceral and crippling, you lose your mind?

I’ve known this pain before. It’s where all my piercing were born from. The diversion for pain to replace pain. I don’t often use the number 10 because 10 is meant to imply true inability to perform anything, the worse pain “imaginable”. Hospital bound, suicidal ideations, that’s 10. It’s not 11 or 20. It’s 10.

I don’t head for pills or opioid chase as some would like to believe we all do, my toxicology screens is and was negative for everything illicit, but it was positive for ethanol on Valentine’s day. I’ve been there before too, prior to ever getting into pain management in 2004. By the end of 2004, I woke up one day and didn’t drink again until 2012 and not to the point of intoxication and not again for another year. Gradually and after January 1st of 2015, I chose to drink when I wanted to, and not drink when I didn’t want to. January 1st was the denial and abrupt discontinuation of Klonopin 0.5, the reduction from 90 mg of Cymbalta to 30 and the denial of Lidoderm patches entirely as well.

The last 14 months have been a hell only certain people survive. I didn’t appeal those denials and reductions. It was the beginning of my decline in hope. I still had something left that couldn’t be taken and that was my Spinal Cord Stimulator which covers my lower back on down to my toes on each side.

Maybe you don’t like my politics or philosophies and maybe I don’t prefer your inaccuracies and errors in my medical records that I update each and every time I’m seen by anyone. Maybe you don’t prefer the thought provoking statements I make or consequences and responsibility topics I engage in.

That’s okay because I still respect your right to speak out against the pain you‘ve endured, perhaps you could afford me the same.

What good is the EMR (Electronic Medical Record) if it’s not used properly? In my recent hospitalization it showed I was on 11 medications, and I was injected with a medication potentially life threatening due to those errors which claimed I was still on a Benzo, BuTrans 5 and 10, Lidoderm, OIC med, Cymbalta and Zonegran.

I was only on BuTrans 10. The records only indicated a few of my diagnosis’ and left out important others. I’m not speaking of independent care or my PMD, I’m speaking of my primary health record. Dignity/Mercy Health.

The record shows that during that stay Morphine was prescribed, but denied.

Because of the medical record errors they gave me Cymbalta and Zonegran for 2 days which I had already been off for over 2 weeks. So when I got to come home I had to fall from it again.

As of now, I’m only on Lisinopril and Hydralazine for high Blood pressure. Atorvastatin for HC, and Nuvigil for sleep disorders.

Pain? You don’t know pain until you really want to live, but you pray to God to die.

And you don’t know pain until you’ve walked my shoes. Each and every worn out pair (not the ones you physically wear on your feet) but the shoes of life, struggle, being born with arthritis, PTSD x 3, DDD + Cervical, Diverticulosis (it is when flaring), CRPS 2, liver disease, reduced kidney function, female crap and all the others that would only take up space. Survival!

You don’t know pain until you keep doing for others to help them through, give them hope, change their lives, encourage them, love them, care-give when you can’t even care for yourself, yet you continue to put them before anything for you. I’ve been an advocate in one capacity or other for over 30 years and a writer for 40. I’m 48.

Friday evening it took over 2 hours to get myself out of the mind space I was in. That mind space that said go hit a wall, divert it, you know how. With the rest of me repeating to myself over and over #StrongerThanPain. “I’ll walk, when I cannot walk, I’ll carry myself, when I can’t carry myself, I’ll fly”

Late that night, my husband went and got me some generic Acetaminophen PM and another bottle of only Acetaminophen without sleep aid.

I’ll most likely never reach out again, but I’m thankful to Barby Ingle for when I did make it into a new day and I was able to talk a few her encouraging words assisted in the ongoing fight to live through it and with it, somehow. HOPE!

I’m thankful for technology and I’m grateful for those who humanize patients. Dr. Bakken, Dr. Duffy, and Susan Pueschel. I haven’t lost faith in my God, I’m losing faith in humanity.

As I said before, it’s all a Mirage, but I suppose it’s also part of the purpose.
PPP

I’m far from well, I can barely walk, my butt is bleeding, every part of me hurts not only from what I already had but from the injuries that occurred on Valentine’s day as well. A laceration/contusion of my head/forehead and face, deep contusions/sprains/strains/possible breaks of my hands/wrists, deep bruising arms, legs, back, butt. None of which documented at all. None of which are part of any record or care in those 2 days. Only my own/photos days later.

It doesn’t matter what caused it, how, or who.

Accuracy matters.

and…

#IHaveTheNerveToBeHeard

Godspeed!

Bracelets; Lockdown; Profound and Letdown

Posted by twinklev

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

Twinkle V. February 23, 2016

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

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February 9 at 12:23am ·

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!

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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

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CRPS/RSD and Suicide

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

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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

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Mid Metatarsal Separation | Lis Franc Separation

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

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Chronic pain, opioids, addiction and controversy

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

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A Call for Action- 2016

A Call for Action 2016 by Twinkle VanFleet

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

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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)

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

No Catastrophic Injury? No Psychiatric PD | Workers Compensation Columns | WorkCompCentral

Posted by twinklev

December 29, 2014

No Catastrophic Injury? No Psychiatric PD

by Matthew G. Markham
State: California

For injuries on and after Jan. 1, 2013, there shall be no increase in impairment ratings for the compensable consequence of a physical injury resulting in psyche, sleep, or sexual dysfunction or any combination thereof, an exception thereto being catastrophic injury which includes but is not limited to loss of a limb, paralysis, severe burn, or severe head injury.

Clearly the legislature, in enacting Senate Bill 863, continues the march to restrict psychiatric claims. This should reduce what now appears to be a routine of some physicians who report compensable consequence psychiatric injury, but the Labor Code and regulations are silent as to what constitutes catastrophic injury and, as we all know, this breeds mischief.

What is the reach of restricting indemnity for psychological injuries flowing from physical injuries under SB 863?

Newly enacted Labor Code §4660 1 C (1) states in pertinent part that except as provided in paragraph (2), there shall be no increases in impairment ratings for sleep dysfunction, sexual dysfunction, or psychiatric disorder, or any combination thereof, arising out of a compensable consequence injury. Nothing in this section shall limit the ability of an injured employee to obtain treatment for sleep dysfunction, sexual dysfunction or psychiatric disorder, if any, that are a consequence of an industrial injury.

A stated exception to the new rule barring increase permanent impairment in compensable psyche injuries flowing from physical injuries is spelled out in Labor Code §4660 1 C (2) which states that an increased impairment rating for psychiatric disorder shall not be subject to paragraph (1) if the compensable psychiatric injuries resulted from either applicant being a victim of violent act or direct exposure to a significant act within the meaning of Labor Code §3208.3 (b) or a catastrophic injury including but not limited to loss of a limb, paralysis, severe burn, or severe head injury.

This newly enacted provision specifically uses the term “catastrophic injury” as opposed to “catastrophic event.”