3 weeks solo and trying to decide whether or not to merge all of it here. All of it. The pain, the passion, all that purpose, essays, the filed away lyrics, the unpublished poems, the soft erotica, those short stories, the dances. Dances?
I’m guessing I’d have to show you, you’d have to read it for yourselves. 20 years of being out there and circulating already.
Expression, adjectives, descriptive, alluring.
Unrelated to the pain communities. Though I suppose that there would be relief, ease, laughter and a sense of distraction in what I could have been providing all along.
Is it? I think that’s a truth statement, mostly. Fear is defined as adistressingemotionarousedbyimpendingdanger,evil,pain,etc.,whetherthethreatisrealorimagined;thefeelingorconditionofbeing afraid. One definition of Faith is defined as confidenceortrustinapersonorthing; beliefinanything. Without having something to believe in, to add light to darkness, or hope in pain, change, love there really can’t be either. Yin and Yang. It takes one to have the other. It also takes commitment to oneself. Believing in ourselves when no one else does. Saving our own lives, if we must.
“One betrayal costs a hundred devotions. One deception sacrifices ten loyalties. One misconception is the price paid toward assumptions and against each other”. ~Dyversiti
The struggle has been real and it’s been hard, but no one has really known that but me. I feel like the 5 years forward I’ve come (and the 10 years it took to get the there) has led 15 years backwards. I’m not physically or emotionally well and trying so very hard to not have a bitter heart. ‘Forgive them Father, for they know not what they do”. I’ve always continued to love and care, and.. forgive even when the pain was on me because I was #StrongerThanPain and I was stronger because fear and faith ran simultaneously through me, always.
In Theology, Grace is defined as the freely given, unmerited favor and love of God; the influence or spirit of God operating in humans to regenerate or strengthen them. The Grace of God has been with me all the while. I’m already flawless in his eyes. Yet I fear… yes I fear, my journey has only just begun. Faith will evenly carry me through it. Hope is seemingly unconditional, but hope is conditional upon others, energy, an action.
Dependent on medication management, I was. I still am, yet I’m not actually taking any pain relieving medication at all. It’s easier to send someone off to mental health than it is to understand that sometimes, usually, those meds give back life, instead of take it away. And in my case it did both.
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!
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.
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.
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.
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.
If I had anything worth betting, I’d bet that many of the documented opioid related overdose deaths were suicides.
How dare I say such a thing? Because in either circumstance the people who should have known better, didn’t. Why didn’t they know? Because they didn’t want to.
No one wants to acknowledge that their child, spouse, parent or partner has a drug problem or is at risk for misuse or abuse and no one wants to believe that even those who appear the strongest, laughing, joking, caregiving, keeping it together for you, would ever take their own lives.
A person seeks medical care to gain something; pain management, acute or chronic, or to manipulate for medications they don’t actually need, but want.
Some people fall through the cracks of not only the medical communities, unintended consequences, access to care, emergency services, but families, too.
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)
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.
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…
The Travesty of Delays- California Workers’ Compensation SB 863 and AB 1124
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
“Copyright protection exists from the moment a work is created in a fixed, tangible form of expression. The copyright immediately becomes the property of the author who created the work. Only the author, or those deriving their rights through the author, can rightfully claim copyright. In the case of works made for hire, the employer—not the writer—is considered the author.” The Campus Guide to Copyright Compliance, COPYRIGHT BASICS: WHAT IS COPYRIGHT LAW? Para 1.
So that the information I’ve previously provided in the post at the end of this page isn’t taken as inaccurate or babble, I’ve taken the time to compile the following for you so that there aren’t any misunderstandings. Links have also been provided so that you may learn for yourselves.
The First Sale Doctrine
“The physical ownership of an item such as a book, painting, manuscript or CD is not the same as owning the copyright to the work embodied in that item.
Under the First Sale Doctrine (Section 109 of the Copyright Act), ownership of a physical copy of a copyright-protected work permits lending, reselling, disposing, etc., of the item. However, it does not permit reproducing the material, publicly displaying or performing it, or engaging in any of the acts reserved for the copyright holder. Why? Because the transfer of the physical copy does not transfer the copyright holder’s rights to the work. Even including an attribution on a copied work (for example, putting the author’s name on it) does not eliminate the need to obtain the copyright holder’s consent. To use copyrighted materials lawfully, you must secure permission from the applicable copyright holders or a copyright licensing agent.
Duration of Copyright
The term of copyright protection depends upon the date of creation. A work created on or after January 1, 1978, is ordinarily protected by copyright from the moment of its creation until 70 years after the author’s death.
For works made for hire, anonymous works and pseudonymous works (unless the author’s identity is revealed in Copyright Office records), the duration of copyright is 95 years from publication or 120 years from creation, whichever is shorter.
For works created, published or registered before January 1, 1978, or for more detailed information, you may wish to refer to the public domain section of this guide or request Circular 15 ( “Renewal of Copyright”), Circular 15a (“Duration of Copyright”) and Circular 15t (“Extension of Copyright Terms”) from the U.S. Copyright Office Web site, www.copyright.gov.
Registration and Notification of Copyright
The way in which copyright protection is secured is frequently misunderstood. Copyright is secured automatically when the work is created and fixed in a tangible form, such as the first time it is written or recorded. No other action is required to secure copyright protection – neither publication, registration nor other action in the Copyright Office (although registration is recommended).
The use of a copyright notice is no longer required under U.S. law, although it is recommended. This requirement was eliminated when the United States adhered to the Berne Convention effective March 1, 1989. If a copyright holder wants to use a copyright notice, he or she may do so freely without permission from or registration with the U.S. Copyright Office. In fact, the use of a copyright notice is recommended because it reminds the public that the work is protected by copyright.
The public domain comprises all works that are either no longer protected by copyright or never were. It should not be confused with the mere fact that a work is publicly available (such as information in books or periodicals, or content on the Internet).
Essentially, all works first published in the United States before 1923 are considered to be in the public domain in the United States. The public domain also extends to works published between 1923 and 1963 on which copyright registrations were not renewed.
All materials created since 1989, except those created by the U.S. federal government, are presumptively protected by copyright. As a result, the chances are high that the materials of greatest interest to students and faculty are not in the public domain. In addition, you must also consider other forms of legal protection such as trademark or patent protection before reusing third-party content.”
Copyright! For my friends, family and interested parties who continue to be violated.. For those of you whose works are being taken, altered, and your names removed from your pieces.
“Copyright protection exists from the moment a work is created in a fixed, tangible form of expression. The copyright immediately becomes the property of the author who created the work. Only the author, or those deriving their rights through the author, can rightfully claim copyright. ” For works created after January 1, 1978, is ordinarily protected by copyright from the moment of its creation until 70 years after the author’s death. For works made for hire, anonymous works and pseudonymous works (unless the author’s identity is revealed in Copyright Office records), the duration of copyright is 95 years from publication or 120 years from creation, whichever is shorter.
This means that many of my works are covered at an average of 100 years regardless of whether or not you know who it originated from. Those in my name are mine for 70 years after my death.
So while better protection may exist through the Library of Congress, people are not blind to knowing when they steal and alter what is not theirs. I can tell you exactly how to maintain proof without LOC records. Accidental violations sometimes happen when sharing someone elses work, do be mindful in this situation to mark it as “unknown” until which time the author , artist or creator can be credited. Removing credit from images, taking people’s lines from articles, poetry, lyrics and even off their Facebook comments is stealing.
If you think that public domain means you get to have it It does not! The term “public domain” refers to creative materials that are NOT protected by intellectual property laws such as copyright, trademark, or patent laws.
Be advised! ~Twinkle V.
(Names, likes, and shares have been removed to maintain privacy; the original is available at its posted location)
S.W. Thank you for posting this……I’m so tired of stuff being remade with their initials and no credit given to the real maker.
Twinkle Wood-VanFleet People create beautiful images and they are taken, altered, or re created as something new. People create amazing works of writing, intellectual thought and re create it thinking if they add a few words it’s theirs. It’s not. They need to cite the original.
Twinkle Wood-VanFleet We all learn from somewhere. It’s how knowledge is gained. We take what we learn and re invent our own thoughts, but all of what has been happening to people is too much. Too many people who spend time, their hearts, education, experiences, even their thought process……….. taken.
Twinkle Wood-VanFleet Most welcome D. I know what you mean and it’s a shame that you don’t because you feel you can’t because they won’t be yours anymore. Everything that is yours, remains yours. I risk myself too sharing some, others are protected better. I finally decided that I’m not going to let other people who do these things keep me from what I love, enjoy, find peace and contentment in and what others enjoy reading, too. I know how to keep an eye on my work, where it ends up and any alterations. Most of us who create, whether it be articles, artwork, poetry, etc don’t mind our pieces being shared, all we want is for it to be kept in the original form and credited. It’s the proper way. x
J.W. I often wonder about that in regards to photos I post. I post them for everyone to enjoy, but I would hate for someone to take credit for them. I should probably watermark them, but it kinda ruins the photo…
Twinkle Wood-VanFleet Right J! I’ve seen a few of your photos. Beautiful ones, too. And I know what you mean about watermarks. We just shouldn’t have to, please consider adding your c (name) in an area even though it’s already yours. At least if people use the share button it’s reasonable because it’s tracked directly from you, your original share. But people even removed that. The other day a lady posted a graphic and even though she shared it to me and others, I asked permission to re share, she didn’t even want credit necessarily because sometimes we share to just share, but it was important for me to credit her because for one it’s right and secondly I’m thankful for all I get to see, and I’m appreciative of time and heart each of you put into what you do, and I like to say thank you when I can. I know, well we all know for each other, we’ll never be able to get to everyone’s shares to thank, but when we can it’s nice. I’ll never be able to get to all of yours, there’s no way all of you can get to all of mine or each other’s either (too much activity ol/fb etc) but when we are able it’s nice.
D O’N I had someone take poetry I wrote from me and took credit for it.
So it rare that you see my poetry . Sometimes they change the words just a tad.
I would share more if I knew it wasn’t taken.
I will add though that when you do searches for quotes or pictures a lot come up without any ones name on the work.
I like the idea of putting unknown on something that’s not marked but then does it give someone the opportunity to say … I wrote that or that pictures mine ?
Twinkle Wood-VanFleet Yes and no D. Yes in that anyone can claim anything, the opportunity is always there to claim it, no in that when it comes to you being the actual writer up against them taking it or altering the piece they would have to prove it was theirs before it was yours. Most artists have proof simply because they were the ones who created it. Think about this. In this example, I’ll use only FB as an example with something shared that’s been shared no where else.. Something is posted on Facebook for the first time. You, me, someone else. Later at any point it re appears in someone else’s name. A record of proof has already been created. Your proof. Facebook itself is a record of proof in it’s own way. Each post is time stamped. How would the other person be able to claim authorship? The only way they could is to then claim they have an original in hard copy or digital form prior to sharing. Being on FB doesn’t allow others to take. Facebook terms and conditions grants FB uses but not individuals. And there the legal part begins and a judge will decide. Instead of going on and on, here’s a link that can help too, it refers to unknown authors and images from the web toward the end using MLA citations and “according to” http://uca.edu/writingc…/mla-basics/mla-in-text-citations/ smile emoticon
Having spent nearly 40 years as a writer in one capacity or another, I’ve always been quite knowledgeable in this area. Having a publishing business licensed in the City of West Sacramento in the mid 1990’s and studying Corporate Publishing in 2005 assisted my knowledge even further. Every now and then I try to re share this combined knowledge.
There will always be someone who will try to take your original works from you, but remember there are steps they have to go through to prove they owned your words before you did.
I hope the above has eased you and I hope it has informed those who are inclined to snatch what doesn’t belong to them.
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. 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. 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.
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.
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
Sometimes people only see what they want to see, hear what they want to hear, but do they really “hear” , “see” it”? It’s all perception! We live in a world of perception and deception especially online. The typed word is “perceived as “tone of type”. People take from it what they will. Imagination goes with it, fantasy, an idea of who or what you are. Tone of Type means how the other person takes your post, how they imagine it as if it came from your lips. It may not be what it is intended to be though after all there really is no tone, there is no voice, there is no body language.. it’s all the typed word. No seen or heard emotion. Nothing to actually base the tone on. I’ve shared so much through Social Media over the years, but I assure you, even with those who I thought were “friends”, I’ve never shared everything.
Since December of 2012 my life, our lives have changed drastically, but let me be fair in saying that just because I haven’t shared like I used to that it hasn’t continued.
(I know some of you know)
Due to betrayal, I haven’t revealed what I might have. I’ve shared pieces and parts. At the end of 2013 I learned a valuable lesson. One that carries with me. I already had reservations and a trust issues.. that person only reminded me that barriers and walls are meant to be kept up.
My husband had already had 2 heart attacks, he had 2 stents in his heart since he was 37 when the first occurred. The second occurred in 2011 if my memory is serving me correctly. Not many months after that our son, who was a freshman at the time sustained several brain injuries that still exist today, so while I praise all of his efforts and good deeds online, we are still working to relieve him of symptoms, like breathing, smelling and other issues. I will not be ashamed to say that he was diagnosed with ADHD and was on Adderall for it for some time. By choice, partly his choice, we decided to go off the Adderall over a year ago and let his body take it’s course. He’s strong! He’s young! My Lil ‘ OZ! My husband had a quad bypass 17 months ago and is still dealing with Diabetes, Neuropathy, and the aftermath. He takes 11 medications upon waking, 4 in the afternoon, 11 at bedtime. I could care less about me anymore, even though it’s hard. Yep, hard! He took care of the me, I couldn’t keep up on so much, now I have to pull for all of it and I …
Some people think because I have hope in my heart, once every 3 months or so that I’m able to go out that I think my shit don’t stink, that I’m better than someone else…
I’m not! Nor would I ever think it. Seriously? ! I’ll be the play’a in my own game!
A pretty outfit, a little make-up, one leg leaning to the hard left while the other holds it up, wheelchair in the van, the stick out of view, but no one knows..
Invisible diseases are even invisible among the very people they should be acknowledged from.
Even those in remission are looked down upon, I mean you can’t have a bad day, you’re in remission, right? Wrong! Remission only means an absence of symptoms for a time being it doesn’t mean that no symptoms will present.
A time being can be minutes, hours, days, weeks.. there is no absolute!
Those people still hurt too, still feel fatigue and get sore, wear down more quickly than someone without an illness.
I’m not in remission! I just understand those who are.
Now have a CRPS patient taking care of another ill disabled person… add struggles, surgeries, life, precious children, the grand baby. This has been my life. As my son approaches another surgery next week…
When you think you’ve had enough and you can’t go on…. Go On!
Don’t ask me how I do it..
Don’t ask me how I feed the dogs, the cat, love my children, my grandson, my family, however distant…
Or how I take care of my grandson…
Don’t ask me about me..
Don’t even ask me how I lift my eyes..
Just know that I do..
(But he leaned in and whispered it might be worth it)
I originally wrote this weeks ago and used the same title recently on FB to show how proud I am of my (our) grandson De’Mantai Xayvier Howard who made 8 consecutive honor rolls and graduated at the top of his second grade class (and the entire school) . … (this post was written before that and left in drafts)
We should not stop living because it hurts! I’ve heard so many times if so and so has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy or Chronic Pain in general if they go out for the evening, wear a certain type of clothing, shoes, accessories, move their bodies they can’t possibly hurt that bad. Wrong! It means they are not letting the pain and disability rule their lives. They want to live, laugh, enjoy a moment, make new memories, perhaps experience some of the old.
Too often we become trapped in the cycle of isolating ourselves. Maybe even feeling sorry for ourselves. It’s okay to feel that way from time to time it’s not okay to let the illness take over our lives and that which we love. Family, children, goals, dreams and wishes for ourselves.
If you see someone doing something you wouldn’t do or your body isn’t capable of doing please don’t judge them. Maybe all it means is that they are pushing past the pain for a few minutes, a few hours, or a few days. Granted there are people in the world that like to be sick, they crave attention and pity, but not all Chronic Pain Survivors have this mentality. It is not fair to group them into one category. One size does not fit all and it never will.
Some of us use medication to try to survive, other’s have gone off of all medication and use alternative strategies for coping and managing pain, other’s use a combination of both as I do. Just because someone can survive without medication doesn’t mean they feel better than you do it only means they have learned to manage their pain a different way.
If you love to dance as I did, dance! I do! I may last 20 seconds, I might make it through a half of a song, I already know my body is going to pay for it, so why should I hold back because I might end up down for a week after? I shouldn’t and you shouldn’t either! If you love to garden, do it! Pace your activities so you can enjoy your time. If after a half hour you can’t do anymore, don’t. There is a fine line between doing too little and doing too much! Learn you and what you are able to achieve. It doesn’t matter that the next person only lasted 5 minutes or another person lasted an hour. You are you!
Make daily goals. Lists can be helpful. I often have 5 things on my list, my goal is to be able to mark off 3 of them. If I can mark off all 5 it’s just a plus for me and if I only make it to 2 I’ve learned to let myself know it’s okay. Don’t put yourself down for not completing a task just move the one you missed to the top of the list and start again.
I tell myself “I will” instead of “I’ll try” it’s just something I’ve found quite useful after completing my Functional Restoration Program back in 2009. The word “Try” sets me up for possible failure from the moment I say it to myself. “I will” motivates me! There is no pass or fail here. We can or we can’t. We will or we won’t. We are not only individuals but individuals in our own pain, depression and mindset also.
Many of us deal with depression and/or anxiety secondary to our chronic pain. Close your eyes, relax and go to your happy place. Using imagery can be helpful. Don’t forget to laugh and laugh with others. Laughter produces endorphin’s and endorphin’s decrease physical pain.
Physical pain and depression can be a vicious cycle in itself. Depression causes pain to increase and the pain causes the depression to worsen. Living, smiling, loving, practicing appreciation and gratitude goes a long way in helping us overcome and survive the diagnosis’ we’ve been handed.
While there are times I suffer, I know we all do, I do not consider myself a sufferer, but instead a survivor. I am surviving this! I am alive! It’s been said that pain is that one reminder that we truly exist and for me I believe it. I am reminded every moment of the day that I am living, I am alive.
Be good to yourselves!
Don’t stop living because it hurts, survive the pain and go on.