The Last 6 Weeks in Review

justlive

It’s been 6 weeks since I completed the Gohl Program. This post will share progress and setbacks since returning from the healing retreat. Hard times dictate choices. A week after returning I lost 3 puppies. 2 of them, I held until they took their last breaths. One of them I held all day. Both of them I gave my own breath to to try to save them. I lost them 12 hours a part, so those 3 days were intense. My son’s car was stolen out of his driveway with important gear in the trunk. It was located abandoned the next day but without the safe.

My mom and dads home burned down.

News 3 Exclusive

Vietnam veteran, wife and granddaughter lose Harris County home in fire
@Ashley_G_WRBL
Published: December 2, 2016, 6:40 pm Updated: December 5, 2016, 9:51 am

Don Tresca Vietnam Vet house Fire (Please share)

https://www.gofundme.com/dbxzr5rw?ssid=835607202&pos=2

My daughter’s liver is still unstable and with little to do for it. She’s been a patient at the Liver Transplant center at Stanford for awhile now and is being sent to their pain management for care.

My husband was cleared for knee surgery though we’re still waiting on scheduling.

In the midst of it all, I’m trying to maintain reductions in pain with physical movement, stretching, and all those things I need to do to recover and strengthen myself further.

Right now, I’m doggie sitting and have been since Monday. Aloha and Gaia came home. They’re Ohana’s brother and sister. They were born on Valentine’s Day, hours after I was admitted to the hospital. They were named from me having just returned from Hawaii a month before. Mahalo and Cupid are no longer with us. Aloha was renamed Legend by his new family and Gaia was renamed Bella. They’ve been together all along and came home as if they never left. They knew their birth place, they knew their den. They were both also reunited with their mother, Oreo. Aloha and Gaia sleep at my head, Ohana sleeps behind my knees, Lilly flower in the crook of my neck and Independence at my feet. Yep full twin bed. Freedom, Amo, and Oreo with my husband.

My CRPS legs and feet are still doing fairly well for what they had become all the years prior and for what they’re becoming. Pain in my arm is much better than before. There really isn’t anything wrong with my arm, directly, it’s referred pain and symptoms from my back, spine. Nerve roots and all that blah blah. I can feel the tug of the curves in my spine and it’s still sort of depressing because I don’t know how to reverse the errors in my own body anymore than I know how to correct the mistakes in healthcare that could have potentially eased it if it had been addressed. The only time my back effects my legs is when those bones shift.

I don’t think most will ever realize the difference in pain levels before and after MLT. That even with these issues the impact of learning what to do for ourselves and how we can decrease additional pain and symptoms simply by a therapy rather than by medication or injections.

After the California International Marathon I was down a few days but that was because I attempted a walk I hadn’t done in 16 years. These few days however wasn’t the week + that activity, events, walking, standing, movement or even stress would have previously caused.

It’s not easy my friends, but it’s getting easier. I don’t have pain medication to turn to for chronic or even an acute situation and I’ve flat out never cheated taking any even when they were in my reach. February will be a year without medication management for pain and related symptoms.

I use sublingual oil and gummies, medicinal, on occasion. I’ve also used Kratom, which has no more risk than opioids when used responsibly.

I still haven’t turned my SCS back on. Not because I didn’t need it a few times but because I’m struggling to not want to need anything. I’m still not using my ASV. I still have no plans on ever being put in a scoliosis brace and I’m still not considering corrective surgery for it.

Wanna live? Don’t rely on others to fulfill it for you.

“Do not ask the stones or the trees how to live, they can not tell you ; they do not have tongues; do not ask the wise man how to live for, if he knows , he will know he cannot tell you; if you would learn how to live , do not ask the question; its answer is not in the question but in the answer, which is not in words; do not ask how to live, but, instead, proceed to do so.”

Page 9  ~Magicians of Gor

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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.

 

 

Review: August and September 2016. California Advocacy Day (NPAF | CCCC) Music Moves Awareness (iPain)

On August 1st and 2nd, I was honored to have been invited to attend the California Advocacy Day, debriefing and meetings with Senators and/or their staff at the California State Capital via the National Patient Advocate Foundation (NPAF) and the California Chronic Care Coalition. Attending as the Advocacy Director of the International Pain Foundation and NPAF patient advocate, I had the privilege of meeting many new people including Liz Helm, and be in the presence of others I’ve crossed paths with at the Capital over the years.

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For the last 2 years the International Pain Foundation has been working on a multifaceted project. Music Moves Awareness premiered on September 1, 2016 in Los Angeles, California. Releasing their Debut song Hope is True, iPain moved to inspire everyone with an an upbeat, inspirational dance  tune that can get patients moving simply by it’s enthusiastic beats.

The 12 Steps to Patient Empowerment was developed with each contributing writer not knowing what they were writing about. The most amazing challenge to create without secondary knowledge and the best outcome that might be hoped for. https://powerofpain.org/ipain-living-magazine/

Copies are available for your business, offices, health establishments. Please contact: media@internationalpain.org or contact me directly at: twinkle@internationalpain.org

Meet the iPain Featurettes https://powerofpain.org/ipain-featurettes/ 

Nominated and awarded the Melanie McDowell Awareness and Advocacy Award – Hero of hope 2016. Smiles for miles.

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https://powerofpain.org/heroes-of-hope/

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This year was an accumulation of heartache and hope.

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The morning after Music Moves Awareness debut in Los Angeles California. Gayle M. Taylor-Ford, iPain Board of Directors and author of Step 10 – Pain Management, Twinkle VanFleet, Advocacy Director,  Melanie McDowell Hero of Hope recipient, iPain, and Barby Ingle, President International Pain Foundation and author of Step 1 – Empower! and co author of Step 3 Discussion – with Sara Hobbs. internationalpain.org

I’m thrilled to be the author of Step 2- Responsibility. 12 Steps to Patient Empowerment and feature- Stronger Than Pain in the current addition of iPain Living Magazine.

Godspeed.

iPain Living Magazine | 12-Steps to Patient Empowerment

iPain Living 
12-Steps to Patient EMPOWERMENT

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Official Magazine of the International Pain Foundation

1. Empower by Barby Ingle

2. Responsibility by Twinkle VanFleet

3. Discussion by Sara Hobbs and Barby Ingle

4. Options by Amanda Green

5. Decisions by Emily Ullrich

6. Records by Melanie Lamb

7. Commitment by Dr. Melissa Geraghty, Psy.D

8. Ask by Dave Gray

9. Familiararity by Carin E Willis

10. Pain Management by Gayle M. Taylor-Ford LSCSW, LCAC

11. Insurance by Brian Levy, EMT

12. Rectify by Ken Taylor

Read iPain Living at:

https://powerofpain.org/ipain-living-magazine/

iPain Living – Flip Edition

https://s3.amazonaws.com/online.anyflip.com/mjqb/lssm/mobile/index.html#p=1


For more information or to order and purchase hard copies for your office, please contact: twinkle@internationalpain.org National Advocacy Director, International Pain Foundation.


iPain on Facebook

https://www.facebook.com/InternationalPainFoundation/

Twitter:  @powerofpain  | @iPainFoundation

CA [R] SB 1160 – Workers Compensation

Commentary- It’s important to establish responsibility for not only the injured worker which seems to be set forth much more clearly, but also for those who control the injured workers life in care, ongoing care, and quality of life. This must include employers, insurance adjusters, attorney’s and those who set back the process of diagnosis, healing, and access to proper and timely care for these injured workers without delay, denials, or stall tactics.

Number: CA [R] SB 1160 – Workers Compensation
Updated (Status 09/10/2016) Sponsor: Sen. Tony Mendoza (DEM-CA)
Introduced by Senator Mendoza
(Principal coauthor: Senator Pan)

ca-state-capital-photo-by-twinklev

February 18, 2016

An act to amend Sections 138.4, 138.6, 4610.5, 4610.6, 4903.05, 4903.8, 5307.27, 5710, 5811, and 6409 of, to amend, repeal, and add Section 4610 of, and to add Section 4615 to, the Labor Code, relating to workers’ compensation.

According to the Legislative Counsil Digest existing law establishes a workers’ compensation system, administered by the Administrative Director of the Division of Workers’ Compensation, to compensate an employee for injuries sustained in the course of his or her employment.
Existing law requires the administrative director to develop and make available informational material written in plain language that describes the overall workers’ compensation claims process, as specified.
This bill would require the administrative director to adopt regulations to provide employees with notice regarding access to medical treatment following the denial of a claim under the workers’ compensation system.
Existing law requires the Administrative Director of the Division of Workers’ Compensation of the Department of Industrial Relations to develop a workers’ compensation information system in consultation with the Insurance Commissioner and the Workers’ Compensation Insurance Rating Bureau, with certain data to be collected electronically and to be compatible with the Electronic Data Interchange System of the International Association of Industrial Accident Boards and Commissions. Existing law requires the administrative director to assess an administrative penalty of not more than $5,000 in a single year against a claims administrator for a violation of those data reporting requirements.
This bill would increase that penalty assessment to not more than $10,000. The bill would require the administrative director to post on the Division of Workers’ Compensation Internet Web site a list of claims administrators who are in violation of the data reporting requirements.
Existing law requires every employer to establish a utilization review process, and defines “utilization review” as utilization review or utilization management functions that prospectively, retrospectively, or concurrently review and approve, modify, delay, or deny, based in whole or in part on medical necessity to cure and relieve, treatment recommendations by physicians, prior to, retrospectively, or concurrent with providing medical treatment services. Existing law also provides for an independent medical review process to resolve disputes over utilization review decisions, as defined.
This bill would revise and recast provisions relating to utilization review, as specified, with regard to injuries occurring on or after January 1, 2018. Among other things, the bill would set forth the medical treatment services that would be subject to prospective utilization review under these provisions, as provided. The bill would authorize retrospective utilization review for treatment provided under these provisions under limited circumstances, as specified. The bill would establish procedures for prospective and retrospective utilization reviews and set forth provisions for removal of a physician or provider under designated circumstances. On and after January 1, 2018, the bill would establish new procedures for reviewing determinations regarding the medical necessity of medication prescribed pursuant to the drug formulary adopted by the administrative director, as provided. The bill would make conforming changes to related provisions to implement these changes.

The bill would, commencing July 1, 2018, require each utilization review process to be accredited by an independent, nonprofit organization to certify that the utilization review process meets specified criteria, including, but not limited to, timeliness in issuing a utilization review decision, the scope of medical material used in issuing a utilization review decision, and requiring a policy preventing financial incentives to doctors and other providers based on the utilization review decision. The bill would require the administrative director to adopt rules to implement the selection of an independent, nonprofit organization for accreditation purposes, as specified. The bill would authorize the administrative director to adopt rules to require additional specific criteria for measuring the quality of a utilization review process for purposes of accreditation and provide for certain exemptions. The bill would require the administrative director to develop a system for electronic reporting of documents related to utilization review performed by each employer, to be administered by the division. The bill would require the administrative director, on or after March 1, 2019, to contract with an outside independent research organization to evaluate and report on the impact of provision of medical treatment within the first 30 days after a claim is filed, for claims filed on or after January 1, 2017, to January 1, 2019. The bill would require the report to be completed before January 1, 2020, and to be distributed to the administrative director, the Senate Committee on Labor and Industrial Relations, and the Assembly Committee on Insurance.
Existing law requires every lien claimant to file its lien with the appeals board in writing upon a form approved by the appeals board. Existing law requires a lien to be accompanied by a full statement or itemized voucher supporting the lien and justifying the right to reimbursement, as specified.
This bill would require certain lien claimants that file a lien under these provisions to do so by filing a declaration, under penalty of perjury, that includes specified information. The bill would require current lien claimants to also file the declaration by a specified date. The bill would make a failure to file a declaration under these provisions grounds for dismissal of a lien. Because the bill would expand the crime of perjury, the bill would impose a state-mandated local program.
The bill would also automatically stay any physician or provider lien upon the filing of criminal charges against that person or entity for specified offenses involving medical fraud, as provided. The bill would authorize the administrative director to adopt regulations to implement that provision. The bill would state findings and declarations of the Legislature in connection with these provisions.
Existing law prohibits the assignment of a lien under these provisions, except under limited circumstances, as specified.
This bill would, for liens filed after January 1, 2017, invalidate any assignment of a lien made in violation of these provisions, by operation of law.
Existing law requires the administrative director, in consultation with the Commission on Health and Safety and Workers’ Compensation, to adopt, after public hearings, a medical treatment utilization schedule to incorporate evidence-based, peer-reviewed, nationally recognized standards of care recommended by the commission, as specified.
This bill would authorize the administrative director to make updates to the utilization schedule by order, which would not be subject to the Administrative Procedure Act, as specified. The bill would require any order adopted pursuant to these provisions to be published on the Internet Web site of the division.
Existing law requires a deponent to receive certain expenses and reimbursements if an employer or insurance carrier requests a deposition to be taken of an injured employee, or any person claiming benefits as a dependent of an injured employee. Existing law authorizes the deponent to receive a reasonable allowance for attorney’s fees, if represented by an attorney licensed in this state.
This bill would authorize the administrative director to determine the range of reasonable fees to be paid to a deponent.
Existing law provides that it is the responsibility of any party producing a witness requiring an interpreter to arrange for the presence of a qualified interpreter. Existing law sets forth the qualifications of a qualified interpreter for these purposes, and provides for the settings under which a qualified interpreter may render services.
This bill would require the administrative director to promulgate regulations establishing criteria to verify the identity and credentials of individuals that provide interpreter services under these provisions.
Existing law requires physicians, as defined, who attend to injured or ill employees to file reports with specific information prescribed by law.
This bill would revise those reporting requirements, as prescribed.
This bill would incorporate changes to Section 4610 of the Labor Code proposed by AB 2503, to be operative as specified if both bills are enacted.
Existing constitutional provisions require that a statute that limits the right of access to the meetings of public bodies or the writings of public officials and agencies be adopted with findings demonstrating the interest protected by the limitation and the need for protecting that interest.
This bill would make legislative findings to that effect.
The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement.
This bill would provide that no reimbursement is required by this act for a specified reason.

For more information-
Bill Text
The people of the State of California do enact as follows:
Read the full text –
http://www.cqstatetrack.com/texis/redir?id=56c6cbba47

See references:

State Pain Policy Advocacy Network (SPPAN)
http://sppan.aapainmanage.org/state/california

Los Angeles Network of Care
http://losangeles.networkofcare.org/mh/legislate/state-bill-detail.aspx?bill=SB%201160&sessionid=2015000

LegInfo Legislature CA.Gov
https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520160SB1160

CSIMS http://www.csims.org/?page=SB1160
Blog: Daisy Bill http://blog.daisybill.com/sb1160-shakes-up-workers-comp

~Update brought to you by iPain Advocacy Committee, International Pain Foundation internationalpain.org

patient-awareness-internationalpainorg-ipain

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)