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.
Over and…
out.
The Body, Mind and Spirit; Humanizing the Soul
https://rsdadvisory.com/2016/02/11/the-body-mind-and-spirit-humanizing-the-soul/
It Really Hurts to Hurt | Live On. Give On.
https://rsdadvisory.com/2016/03/20/it-really-hurts-to-hurt-live-on-give-on/
The Unintended Side Effects of Fighting Prescription Drug Abuse by Twinkle VanFleet
The California Progress Report January 8, 2015
Bracelets; Lockdown; Profound and Letdown
https://rsdadvisory.com/2016/02/26/bracelets-lockdown-profound-and-letdown/
RSD Advisory- Where Chronic Pain & Depression Collide 
I have read your posts the last few months and am saddened to read this today (it is only 2am in NZ). Looking back at what you’ve written over the years it has all been positive and motivational for other CRPS sufferers, and even though I personally don’t think we have to ‘keep fighting’ and ‘don’t give up hope’ I am surprised at your change of positioning?
Not that I blame you a bit, I don’t!
I do not believe that we have to live with CRPS, it is our choice, we can opt out of our ‘non lives’ if we want, if it all gets too much and YOU seem to have had a particularly tough time with the medical system in your country this year!
You replied to my comment on suicide in February by saying I should get help, get a caregiver to help etc; I am 100% alone. I have NO medical team, caregivers, friends, family, no one, and I am in a tiny country where nothing is known about CRPS, there are no treatment options and basically no one gives a crap.
There is no hope for me, I am a realist I know this.
But you have a family and loved ones, for you there is hope!
However, if you chose a way out of this which is of your own making I would also fully support that decision. You have options, you don’t HAVE to fight to stay in this pain prison.
Whatever you do it will be the right decision for you made by you…but I do hope to see more posts from you whilst I am still around ?)
Take care Twinkle.
From Gemma in New Zealand.
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Dearest Gemma
Mental. perseverance. That’s how I managed. If I share my “disorders’ list from my medical record (mostly accurate, a few not) People would wonder how I ever did it at all. But I did, I tried and I kept doing as able. A family of loved ones. Yes, I love them, as morbid as it sounds it was for them, too. Support though… I’m too strong! I appear too strong because I take care of everyone else and their matters. Choice? Not always my choice, yet my responsibility to be sure their business is taken care of. I didn’t have any support. Not even in the months, year prior when I pleaded. So see, in previous posts I spoke of people who fall through the cracks of their own families. I already had and I already knew it existed. Hope sometimes need hope to help carry it along. When there isn’t any hopelessness begins. It’s why it was always so important to me offer you hope, a reason to go on, others, provide information, awareness and become a part of change in legislative pain policy. I tried and what I tried even harder for was being a pain patient myself, but not going out in the world being viewed as one. That changes everything! We have to figure out a way to live, find joy, smile, laugh, let those endorphins work for us. We have to show others that being in pain or having pain untreated leads down roads that we sometimes never come back from. Alive, I’m alive, but I died inside a long time ago. Oh so I go to that place tomorrow, 3-4 hour intake that by choosing multiple choices, yes or no’s etc will define me. I have a good idea what the diagnosis’ will be. And one of them is not accurate already. I was already diagnosed with it 10 years ago and it doesn’t apply. My own Mercy provider documented it was incorrect. I wrote an article about that too many years ago. I forgot the title at the moment… Most likely… Bipolar vs Chronic Pain. MDD, I already know. Situational depression, I already know. Anxiety disorders, I already know, PTSD x 3 I already know. That physical list though, and still denied by 4 providers in a single day, one of which was an Emergency Department. Followup? I don’t have any. Pain Meds, nope. My brain had been altered by an SSNRI for 12 years or about. Those are chemical changes. I don’t doubt it’s altered again from the drastic discontinuation. Love I still love, care I do, but I have to put away caring more for others than myself. I doubt that will ever happen, but as the saying goes, if mama ain’t happy, no one’s happy, Isolated for over 15 years. Unable to drive for 2 reasons. CRPS and Sleep Disorders. Rely on other’s, whose time I’m taking or needing breaks my heart. I live in the place no one should live in, the place that’s mean for sleep and relaxation, my room. Or another closed room in the home. I do change my location from time to time just to see different walls. Living room? Not my place, or my space. Being around people, for real, not internet based, few and far between. Yet the minds that imagine what they do, could never know. All the body piercings? Born of pain in the early years. Between injury and diagnosis. The leather.. now that’s a funny one. While I do have a beautiful full length wilsons leather coat, the one I wear is my mama’s. Harley Davidson, silver studs, gifted to me over the summer by my nearly 70 year old mom. The braids, or the messy spirals, don’t know what to say about that. It’s me, my brand, same with the piercings. My hands, wrists and arms aren’t well, My SCS is bilateral. Nothing to help ease the upper, so I use my fingers, well braid my hair to desensitize and keep them moving. It’s just that… I can’t take them out the same way. So for weeks at a time they stay. My legs, done. My spine, can barely lift myself to even get to my feet. For me, I won’t use the wheels (wheelchair) or the dozen or so canes I have, including 4 prong, or walker. Nice walker too, has a seat, breaks. Nope! I decided my walking stick would do. I actually got it in Georgia while attending our daughters boot camp graduation from the Army and visiting my mom and dad who also came many years ago. Around 2008. My biggest wisg, my prayer is for all of you hurting, suffering in silence, trying to reach out, but unable or unheard, call the Suicide Hotline. At least they can help talk you down, or just listen. I never thought of that because… well, those are my issues. I’m not so trusting, but I love deeply, forgive easily, just can’t forget something in it’s entirety, even when I throw it away. I’m not like most people, my mind is different, my thoughts are vast and provoking, and I’m not naturally rude or potty mouthed by nature. Can’t have a conversation with anyone, or offer your thoughts or insights. Even professionals, medical or otherwise. They’ll block you, or remove your statement. Interesting really that people can be so blind that they couldn’t even consider thought, ideas, hope, compassion, passion or even science behind another persons words. My heart and mind feels other people. Those are the people who don’t feel back. They can’t. Their conscious hasn’t risen or evolved yet.
Gemma, there is hope for you. Let there be hope for both of us.
Sincerely,
~Twinkle, Sacramento
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