Fine Lines

There can be such fine lines between doing and not doing, trying and not trying enough, managing time and wasting it, finding balance and not balancing at all.

I’ve driven now twice since not having drove but a handful of times in 17 years. While both times were only a few blocks away it is a starting point. Next time I’ll turn left and go down farther to the shopping center about a mile from home. Most likely repeating that quite a few times before trying further.

I’ve hit a few lows in wondering if all this is just too good to be true. This is because in order to maintain pain relief from the original CRPS Type 2 diagnosis and the several secondaries along the way, I have to do physical routines daily in order to keep it from ever being what it had become. These routines can cause their own pain because of the lack of activity and movement as a result of the injuries and illnesses that either initially or had eventually overcame me. Many of those things that I did to comfort myself from reaching the edge were some of the same things that were to my own detriment. Hanging my legs off the bed in order to try to sleep because my feet and legs were either too swollen, allodynia, hyperalgesia, burning etc. Using pillows, several, in order to prop myself into positions to ease pain, but at the same time it taught my body to develop even more damage.

Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better. ~Samuel Beckett

We aren’t taught how to be able to care for ourselves in simple manners that are the greatest of all. We’re told go exercise, lose weight, quit smoking (if you do) and that’s about it anymore. Great advice, but it’s only advice. There isn’t any teaching in it and people leave still wondering how, how in all of it. If you have chronic pain of any type it’s because something in you, illness or injury has lasted beyond 3 months (used to be 6 months for that classification).

Some people do get the pain medications, the opioid management, pain management, lumbar or cervical block injections, procedures etc. Yet none of these get people healthier again. None of them teach living with pain. They either disguise pain awhile, fail, or side track a person from learning how to themselves. Other medications such as SSNRI’s and Anti Seizures such as Cymbalta and Neurontin are over prescribe, handed out like candy and more adverse than the opioid itself. I promise you that. Opioids taken responsibly is less a problem than the lifetime problem that stays with you long after getting off those other types. We may have natural opioid receptors in our brains, but our brains (and minds) aren’t meant to be altered to the point future damage.

I’m not anti opioid.  I’m anti leave someone where they are when there are other options in relief that aren’t suggested or believed in by mainstream western medicine. I believe in CAM or Complimentary and Alternative Medicine. I believe in the Gohl Program. I believe in Integrative Pain Medicine.

Yet these services are rarely offered, or are not covered by insurance. I myself was denied for Acupuncture my second year into all this. (2003). I could have been cured, or in remission right away, but instead we keep people bouncing the healthcare systems, costing billions, left disabled, unable to contribute to society, getting sicker when we have the capability to get people back into their lives. If we do, even more billions are lost in profits, revenues and work for the working class. Damned if you do, damned if you don’t and that’s the world we live in. If it’s not about me it’s about you. Will it ever be about us? I already know the answer to that.

I’m glad that The Academy of Integrative Pain Management previously The American Academy of Pain Management has merged the concept of healing by both standards of care. I’m thrilled to have been a State Pain Policy Advocacy Network Leader (SPPAN) which is a project of of the AIPM/AAPM for several years. I’m happy to have been former California Ambassador, Executive Board Member, Advocacy Director and Healthcare advisor for the International Pain Foundation 2011-November 2016. I’m happy to still be a Medtronic Patient Ambassador. I’m glad to have represented iPain as a member of the Opioid Prescribing Taskforce via the Medical Board of California and for being 1 of perhaps 3 patient advocates who were apart of the Revised Standard Guidelines for Prescribing Controlled Substances For Pain. I’m happy that I attended with and testified on behalf of pain patients with the California Medical Association (DeSaulnier)

I’m not happy that I fell hard in the midst of the CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016 as they were being implemented, recommended and circulated. The Guidelines for Prescribing Opioids for Chronic Pain CDC. I’m blessed to be part of the public record, written and on the last call pertaining to the Guidelines. The call that determined whether or not to enact the recommendation. Which had been determined before the call had ended in case you didn’t know.

Instead of saving lives and allowing physician’s to care for their patients under their own oath it instilled fear in providers to prescribe or even address pain at all. I do not care that the Guideline’s were meant for primary care doctors because it caused fear for all doctors including pain management specialists.

I have to be a responsible patient, yes? I have to be in compliance, yes? Yet there is little to no responsibility or consequences for non compliance in others or those who believe they are above anyone else. Everybody’s pain day will come, if even by old age alone.

I’ve lost my reputation online, but offline my words are different. I’m different. This doesn’t mean I’m a different person it means that perceived perception, written content and context is taken as you will. Believed or Imagined. Generally just a fantasy in your own minds.

I’m diverse.

Online I no longer care. I’m both polite, knowledgeable, caring and I’m blunt, potty mouthed and adverse. Yesterday was the 1 year anniversary to the second time I attempted suicide as a result of pain and errors and not just my fear in it all, but the fear in overdose, the fear to prescribe, the fear to keep your medical licenses, the fear of the DEA, the fear of scrutiny, the fear to take care of your own families and I actually understand. I actually feel your side of it. I feel you when you’ll do almost anything to maintain your reputation even if you’ll lie to do it.

When you can feel my husband of 31 years side of it, or my 3 children’s broken heart in it.

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Maybe I’ll care again the same way I used to. Though I hope not because I really cared too much about everyone else, what ever one else needed, or wanted. Right now it’s all about me and overcoming the challenges of living through what I can’t ever change for me in this lifetime, or what I can never take back in the option of suicide, but I can still help change it for others.

They are fine lines, after all.

 

 

 

 

 

 

 

Packing and Praying

I messaged my son earlier and I asked him to pray for me. I said “Please pray for me that I can do the work and be strong enough to go on with it”. He replied “Always do mom”. I said “Thank you”.

My recent Twitter posts were meant to be known and while I could have held back on the potty mouth it wasn’t all that necessary. Why? Truth. Because that’s the reality in it all. I have my dead daddy’s mouth and while I didn’t use those words when he was alive or even in the first 20 years after he left us I’m sort of proud that it really doesn’t matter in the grand scheme of things. It only matters that I don’t drop those words if I want not to. It’s not beneath me otherwise. Why? Because I’m not above anyone.

Ozra is coming to pick me up on Saturday. We’re going to get this hair cut off. Yep. Most all of it. Short. Most likely to my shoulders or layered down a little farther. If there’s enough without going shorter, I’ll leave it with our girl who owns the shop to donate it.

I leave California the next day for awhile.

Threw some things away today, did dishes, cleaned up, and started packing.

Taking a break right now. I do still use my pennies carefully, but I don’t run out as quickly and that’s a good thing.

I posted about guilt some. The one thing I feel most bad about is not being able to work sooner to fix things before they got so out of hand. Carrying it all is heavy. If one person can’t carry it someone else has to. I did and I will. I have to.

I never stepped away from God and I never stopped praying. I did stop believing in hope even though I continued to be hopeful for one day.

I’ve always known I’d have to live it hard to understand it. Understand what pain is, poverty, loss, and rejection. To love so deeply that it hurts. That’s why I understand that people sometimes have to choose roads that another would never go down and many pretend don’t even exist.

I’m not looking for an easy life yet I’m hoping there’s at least an easier one out there. Hard is good. We learn. Too hard can have devastating circumstances, consequences that can’t be taken back.

My mom said “The reason you’ve gone through it all is because you have a place in heaven”.

I don’t deserve heaven.

heaven

But maybe she’s right.

Facebook Deactivation | RSD(S)-CRPS Advisory Info & Support Group

By December 2nd my Facebook was deactivated. Even though I had considered it over the years, I was worried about losing my group and pages as a result, especially my RSD(S)-CRPS Advisory Info & Support Group created 13 years ago at another location. It was a spontaneous decision and one I have not regretted once.

This Group now belongs to Trudy Thomas featured Blog Talk Radio Host of The Body, Mind and Spirit Network and honorary leader of my group since it was moved to Facebook. If I choose to return it will be both Trudy’s and mine. Craig Fletcher remains an Admin/Leader and Erik and Kurtis VanFleet remain admins for the purpose of recovery. So that there are no misunderstandings Trudy is now me for the Group. Her decisions are as the current owner of the group. I have no doubts in her ability, choices, or decisions. I trust her to fulfill my vision, passion and purpose for which it was founded for.

Trudy is not available for drama, or he say’s she say’s. She would be available as able, as I was, in the event of an emergency situation such as specific breaking of the rules that were established long ago, or those being malicious or instigating toward one another. I may be involved from the background with updates from Trudy though I will not require them.

I’ll always want to know if all is okay. That’s because I care a bit too much and to my own detriment. Being an empath/sensitive only causes me to feel your pain, feelings, thoughts, dislikes, and emotions I rather not feel of you because then I’m over flowing with mine and yours, too.

Trudy is learning to live again and without her husband Mel of over 40 years. It’s only been a month since she lost him to inoperable cancer which had only been discovered 4 months before.

About 2 months ago I had posted on Facebook about Trudy, her situation, about someone we all knew (most of us) and it was a long post but I hadn’t shared who she was. This post was taken so far out of context from a few people believing I was talking about myself that I was dumbfounded. This wasn’t the only post misunderstood. I’ve posted random comments about family, life. I’ve shared meme’s, music, lyrics, poetry that of other’s and some of my own. I’ve shared lines or stanza’s in pieces and parts. Even those are taken adverse. I’m well aware that once it’s on the internet it’s always on the internet. I’m aware that if we make a post that we can’t expect others to comment if we put ourselves out there. Of course. I would never hop onto someone else’s page to scold them or entice an argument. I have however replied on my own page when someone bounces onto mine.

My point is that not everything is internet or online related, and sometimes things are. In this post it was online related, yet taken as something else, when an offline related post is assumed to be about online people. The perception is so often opposite of the intent. Left to interpretation by tone of type. The assumed tone of voice or mannerisms in the typed form of communication.

Please be mindful of Trudy’s loss. My heart continues to break for her.

Facebook is nothing but a trigger for me in my own healing and progress.

The Edge. There is no honest way to explain it because the only people who really know where it is are the ones who have gone over.
~Hunter S. Thompson

I’m still doing well since completing the Gohl Program on the 28th of October and will continue to provide progress updates on Manual Ligament Therapy (MLT) as able.

I’m still on Twitter @rsdcrpsfire and my other social media accounts are in tact at this time. I’m still an avid researcher and as hungry to learn as I’ve ever been. I’m also looking for work to attempt to provide for my husband and I.

Since resigning from iPain I have not joined any other organization, nor will I. I’ll share and support as I always had.

I made it to the California State Capital to support Mr. Nate Torgerson, Chief Engineer, Medtronic Stimulation Pain Therapies on December 4th at the California International Marathon where I was right there near the finish line to support him as he crossed it.

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Medtronic Chief Engineer, Pain Stimulation Therapies Nate Torgerson crosses the finish line at the California International Marathon in Sacramento. Photo credit: Twinkle VanFleet

I had the honor and privilege of meeting him later that evening for dinner.

Great conversation, sharing, learning, and food at Zocalo’s in downtown Sacramento. He asked me about my experience winning the Live On Give On Bakken award, and I told him what a surprise it had been to learn that I had and the honor it was to receive it from the hands of Dr. Earl Bakken himself.  Dr. Bakken is the co founder of Medtronic. Forever grateful to be chosen as 1 of 12 recognized internationally and being 1 of 2 from the United States. Twinkle VanFleet, Sacramento California. 

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Twinkle VanFleet, Sacramento, CA, LiveOnGiveOn.org recipient. Original Press Release Photo.

Another honor was being contacted by Mr. Pat Anson of the Pain News Network to consider offering comment on an upcoming article. I accepted.

Opioid Pain Meds Rarely Involved in Suicide Attempts
December 05, 2016 By Pat Anson, Editor


I’ll keep sharing my story, what happened, how it happened, when it happened and anything else I can to support those lost by pain related suicide. As well as those survivors who can never go back to the moment before they attempted to take their own lives. I don’t get to go back and pray for an option, help, that wasn’t there but I can go forward understanding why they did it, what the breaking point was, how severe physical pain was to go against all they believed in just to be free from pain and suffering.

My casting calls are still booming with possibilities since I updated a couple of weeks ago. For now, I’m deciding, and brushing up on the various characters I can play.

Offline, I have an amazing reputation, respected in advocacy, legislation, held in wonderful regard by those that matter, including those in authority, business, politics, and healthcare even when in disagreement over a bill, debate or topic. Online, unless we already know each other, or have met in person it will rarely be the same because what you see isn’t always what you get and what you get isn’t what you’ve already given.

It’s all a stage.

Be good to one another.

~Twinkle VanFleet

#StrongerThanPain

Adjusting

You don't owe anyone anything... You owe yourself everything. By Dyversiti. ResizedIt’s not all sugar plums and dancing fairies even when bodily pain is minimized to any degree.  Especially in the injury that led to RSD/CRPS and the devastating consequences that just hasn’t let me forget. It has nothing to do with the loss of work, inspirations, or goals that might have been. The regret has remained heavy because of the manipulation involved in a decision, one I would have never considered had I not been told from health care providers that doing so would prevent a detrimental outcome and allow possibility in recovering. The choice was for the ones I already had. I never got better and as a result I not only felt deceived but also used to reduce cost and care for both of us.

I’m trying to tell myself this is what it was for. Today!  It just took 15 years to get there. I’ve already told me how stupid I was for believing in others when I knew better and that led to future distrust. I had already overcome, mostly, other trust issues and there I learned to build my wall so much stronger than it was before.

So here I am still trying to clean up my own mess from the first few months of this year and its aftermath that’s only 7 months old that I can’t even throw away as garbage yet because it’s still active with a new appointment in just a couple of days.

Every day that I get better is another day that I ask myself why. What was it all for?

I suppose I’ll just have to wait and see.

 

 

Support

I would like to take this opportunity to thank everyone who’s supported me this year. If you’ve ever offered a “feel better”, “prayers”, “love”, “care”, “like” or supporting comment on any of my pages, this means you. You’re support has meant much and will remain as such. For many years, I rarely revealed it all. One day came that I started to and while I may have said too much, I really haven’t said enough.
Social media provides a platform of venting that some of us would not ever reveal the same way offline. It’s sometimes too easy to just say it, but then consequences arise.
I’ve learned that while my family would die for me they would not ever know if I was in distress. I look well enough, I keep going, I’m too strong. I’m our rock! This can be said for all the families out there that has dealt with addiction, or overdose. Let’s teach families to recognize signs and symptoms of both the use of medication and those who haven’t been relieved enough to sustain life. When we can do this, we’ll truly make the impact we need to for other’s.
There is pain in addiction and overdose, there is pain in believing you’ll never make it because your physical self cannot handle the body, mind and spiritual decline in it’s entirety or the emotions that arise from it.
I’ve learned that we’re all in pain. One way or the other regardless if someone admits it or not. All of us have an underlying “mental health” emotion. It’s the human experience. Life, love, loss, finances, parents, children, families, friends, work, volunteering, hopes, wishes, exercise, something..

There will always be something to stress down from, re group, and go forward with.

It’s life and it’s living.

You don't owe anyone anything... You owe yourself everything. By Dyversiti. Resized

 

If you’re for real, you’ll always be, if you aren’t?

 

Post removed. Some things are just taking too long and other things are just odd.

Apologies for venting that way. x

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Don’t say it unless you’re sure okay?

CRPS and Suicide

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

When no one else believes in you…

… You better! ~Twinkle V.

 

Hope Restored

Hope restored after 6 months of hopelessness is hope forward. I have not yet revealed that I’ve been in the voluntary care of mental health services. I have not revealed what it takes to move on after an emotional catastrophe instigated by the inability to control physical pain. I’ve revealed in part all that I’ve done to survive without pain management and without any prescribed pain related medications at all. I’ve shared that all I’ve had is my SCS/lower extremity. I’ve shared options I had to choose for myself to make it this far due to an increase lower and an unrelenting flare upper, and I’ve shared that I had to choose an option that I never wanted for myself. Approximately 5 weeks ago, I transferred my care to the U.C. Davis Lawrence J. Ellison Ambulatory Care Center which is a teaching facility. Internal Medicine. This was done with the assistance of my therapist’s managed care assistant. One does need a referral from another health care provider to be apart of what I’ve chosen. The teaching, learning and research part of UCD. I want doctors to learn from my complexities, and in this I pray new medications evolve or perhaps some day a cure for CRPS. I hope that together we can learn what causes spread, an injury taking on an abnormal healing path and why it’s always disproportionate to the inciting event. I want my life used while living to be studied, for me and others, and while I’ll give it when I’m gone too, lets learn now so that maybe I can also be blessed with a remission rather than a progression. I’ve already met with my Primary Care provider who gave me 2 referrals. One referral I’ve shared and that is to the U.C. Davis Spine Center – Pain Management which I go to on the 4th of next month. The other was a new Med-Psych which I went to today. These students and the doctors who lead them have been amazing. I’ll not yet reveal who they are, but I must share the compassion and the comfort they provided. Today, my new doctors, stated “We’re glad you’re here, we want to help you”. We want to be a team with you”. The weight on my shoulder suddenly lightened. My therapist currently at another location has told me, several times already, how bright I am, my compassion, my empathy, my care-giving. My new one’s have stated same or similar. My expectations are reasonable. Today, these 2 thanked me! And I had to thank them more!

I’m not crazy! Confirmed again is that I currently (It’s getting a little better) I go too low due to Major Depressive Disorder – Severe. Previously I had the diagnosis of Mild Recurrent Major Depressive Disorder. So I was being maintained with Cymbalta/Duloxetine as the dual combination assistance it provides. Depression and Nerve Pain. So that there are no mistakes in your mind, my depression is secondary to CRPS and the constant roller coaster that’s come with it. I’ve never taken an abundance of opioid pain reducing medications, but I had been helped with a little. I’ve never had more than the little, and I’ve never taken additional for break-through pain. I really tried. There were so many days that I wished my only med was a little higher and there were other times I prayed I had something to help with pain above what my 5 mcg/hr of BUTrans could cover. When I asked the P.A. at my pain management clinic of 12 years, less than 2 weeks before trying to leave to accept an award from Dr. Earl Bakken, Co Founder Medtronic, she did put in to increase me to 10 mcg/hr for 2 months, but not without stating fabrications into the record. I never got it for the purpose I prayed for. I went to receive my award having been without any pain medication and without what I had been currently withdrawing from. When I was dismissed from that practice it what for attempting to correct errors in my medical record 6 days after a 72 hour suicide hold that I did get to come from 2 days later. My medical records indicate that I never told the P.A. of the continued denial of Cymbalta and Zonegran, but a week before my break down, I called and asked to speak to the psychologist on hand. I had also appealed the denial via my pain management provider, not attorney, who had appealed on my behalf. I had already won on January 16th, yet, I never… never received those medications again. It is not possible that my provider wasn’t aware because it was appealed through the clinic with my signature. In addition, when I paid $30 for only 10 sheets of medical records, I found that it also states I work full time as a Graphic Designer. I wish that I was. I don’t work full time, in fact I’ve not worked any gainful employment in 15 years and I’ve never been employed as such. Accidents happen right? Oversights, assumptions? Idle mistakes? I did attend school in 2005 for a Corporate Publishing degree and I was nearly finished when I took a leave to have my first Spinal Cord Stimulator permanent implant, I returned 10 weeks later, yet I’ve not received that full diploma. It’s possible the Graphic Designer came from that, otherwise, there’s no other way. Understand why I tried to correct discrepancies? Fired! There are other mistakes. To set any record straight including the “record” I was never let go by my doctor, anesthesiologist/surgeon. He gave me a block only 3 weeks prior, and I did not ever see him after. My physician did not let me go. The P.A. did using his name. 12 years of a constant. I was a model patient in compliance and utilizing tools that I learned and have gone on to teach from the functional restoration program I completed in 2009. I cannot at this time reveal all, but I will. I’m trying to do it without destroying someone else’s retirement. Yet, how can we, any of us, teach patients to be their own best advocate if we can’t be? If we’re done the first time we ever disagree?

Today, I allowed my new doctors to increase my current 20 mg of Duloxetine that I only just started 5 weeks ago to increment up to 60. 60 mgs is the therapeutic dose to assist in nerve pain.

(Added July 31, 2016)

I’ve learned to not show pain behaviors and I’ve learned not to guard. I learned that the world doesn’t want to hear “chronic pain patient” and I learned that it was my responsibility to be a productive member of society, regardless. I fulfilled everything that someone else taught me and I did it well. I thought that maybe, just maybe, my own providers might be happy that I did this from what I had learned from them, but when I mentioned that I had succeeded somewhere, my records implied enough that the WC insurance company denied approving those medications.

To this day, I have no WC provider for my lower right CRPS extremity. Settled for lifetime medical in 2008. This includes, no physician coverage for maintaining my SCS. The new pain management cannot include that foot because it is another’s responsibility in care.

I’m still very much on my own with a part of me.

I’m back the best I can be. I may never be back to what was, yet I’m back to do all I can do for you because I’ve already been where many of you are heading, I’ve been there in each and most situations a patient can be, and I don’t ever want you to go where… there is no hope.

Hold on, really tight, and hope might be possible again.

TwinkleV @rsdcrpsfire #StrongerThanPain

#StrongerThanPain

 

(Edited to add and attempt to correct typo’s)