Helping to Give Individuals a Sense of PurposeThough we have evolved now provide employment services to all job seekers wanting to get back to work, one main focus still remains serving people with disabilities. We recognize that a steady job not only gives individuals a sense of purpose, but for people with disabilities, it also often plays an important role in helping to maintain good mental health and a sense of normality. In addition, the unemployment rate for persons with a disability was 15.0 percent in 2011, well above the figure of 8.7 percent for those with no disability. (Source: U.S. Dept of Labor Statistics) This disproportionately high rate of unemployment contributes greatly to the national cost of individual entitlements in the form of disability benefits and unemployment payments.Crossroads provides a full-range of vocational rehabilitation, supported employment and job placement services for people with disabilities. Through individualized services, our clients are able to successfully secure and maintain employment. Many of Crossroads’ facility services employees began first as Crossroads clients – struggling with a disability but yet having that desire to work and become more self-sufficient. With Crossroads’ help, they became employees of the organization; some have been with us for more than 30 years!The categories of services which we provide our clients with disabilities include:Create a PlanPrepare for WorkFind Your Job and Stay EmployedCreate a PlanEvery individual’s path in life is different – whether you are meant for a job in front of a computer or behind a lawn mower – having a sound plan is the first step towards success. At Crossroads, we will first conduct a vocational assessment with you – the first step to help you create a plan based on your interest, your skills, and your strengths. We will also consider any barriers you may have to finding a job, and help you outline the steps necessary to achieve your goals.If you are ready to create a job search plan, call Crossroads at (916) 457-1900 or email us at firstname.lastname@example.org.Prepare for WorkWhether you are looking for a job for the very first time or want to retrain to make yourself more marketable in an increasingly competitive job market, Crossroads can help you prepare for this next step. Depending on your level of experience, your ability and capacity to work, you may need a variety of services so that you are best positioned for a successful job search. Crossroads can provide these services.From fundamental skills like filling out a job application and answering standard interview questions to acquiring specific technical skills like vocational training, Crossroads can provide comprehensive supportive services that individuals need to entering or re-entering the labor force.Services that Crossroads can provide to people with disabilities include:Filling out an applicationSoft skills trainingResume writingInterview prepJob retention strategiesIf you want to figure out what you need to be prepared for your first or your next job, call Crossroads at (916) 457-1900 or email us at email@example.com.Find Your Job and Stay EmployedOnline job postings, word of mouth, “help wanted” signs on the windows of local retailers…there are so many different ways to find job opportunities. But how do you find the one that is right for you? For people with disabilities or other barriers, this task can be especially daunting.At Crossroads, we have nearly 35 years of experience in helping job seekers with special needs find appropriate employment. We seek and build relationships with local businesses that share our philosophy that hiring people with disabilities not only enriches our community, but also contributes to their bottom line.Crossroads has helped place quality job seekers with businesses like Safeway, Subway, Home Depot, JimBoys Tacos and other small and large local businesses. Depending on your needs and your eligibility, Crossroads may be able to provide additional services that will help you stay employed once you find your job, such as follow-along services to help coordinate employer accommodations. You may also qualify for transportation assistance, in which case Crossroads can provide public transportation vouchers.If you want to know if you qualify for job placement and ongoing support services, call Crossroads at (916) 457-1900 or email us at firstname.lastname@example.org.Crossroads also a proud partner of Ticket to Work – an employment program for people with disabilities who are interested in going to work. The Ticket Program is part of the Ticket-to-Work and Work Incentives Improvement Act of 1999–legislation designed to remove many of the barriers that previously influenced people’s decisions about going to work because of the concerns over losing health care coverage. The goal of the Ticket Program is to increase opportunities and choices for Social Security disability beneficiaries to obtain
Introducing Stronger Than Pain as an upcoming NPO for Suicide Prevention and Relief
On June 7th 2017, my son announced that together we’ve began the process of becoming a non profit organization. Our mission is suicide prevention and relief, techniques, support and services with mental health awareness at the heart of our reasoning.
After a considerable amount of discussion, I have opted to begin the process of starting a 501(C)(3) Non-Profit Organization with the help of my mother Twinkle Our mission will be suicide prevention and relief along with mental health awareness. We have begun the process of filing paperwork with state and federal. We lose over 40,000 people a year from suicide, over 5,000 of those are Veterans, over 250 are First Responders, and our goal is to help lower that number. Please like our Facebook page StrongerThanPain as we are currently working on building our website. Please email Info@StrongerThanPain.Org for any inquires.
While I chose not to form an NPO for chronic pain and RSD/CRPS over the years because I appreciated being apart of others as a volunteer, I’ve opted to do so with my son.
“Do not go where the path may lead, go instead where there is no path and leave a trail.” ~Ralph Waldo Emerson
Mental health is at the core of every physical ailment and physical decline, illness and disability becomes a hardship to mental stability.
Suicidal ideations, attempted suicide and suicides themselves affect our soldiers, first responders, physicians, chronic pain patients, at risk youth, LGBT-Q, all of us.
We want to help you believe that who you are is enough, what you do is enough, we want you to know that you’re loved and appreciated and we want to help you either stay or become stronger than pain.
We want to assist you in healing your body, mind and spirit. We want to help you overcome not just emotions but obstacles too.
As we build our brand and develop our website, we’d like to invite you to like Stronger Than Pain on Facebook.
Follow us on Twitter
Or Email with any inquiries, suggestions or for interest in joining us at: email@example.com
Every donation counts toward helping us help you, every like is worth just as much.
We’re proceeding through the proper steps and our initial paper work is currently being processed for filing with state and federal agencies to obtain our status.
While our website is currently under construction and we’ve only just begun we want you know that we have.
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.
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.
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.
Live On Give On | Applications for the 2016 #BakkenInvitation Award now open.
About the Bakken Invitation Inspired by Medtronic co-founder and philanthropist, Earl Bakken, the Bakken Invitation celebrates and connects people who, with the help of medical technology, have overcome health challenges and are now making a difference in their communities.Empowering patients to better manage their health is a key element in Medtronic Philanthropy’s approach to expanding healthcare access to the underserved. By sharing and celebrating stories of patients from all over the world, the Bakken Invitation is designed to not only provide valuable information and inspiration to others, but also foster a global movement of people who “Live On. Give On. ”Get involved at www.LiveOnGiveOn.org
Share a Story For every story shared on the Live On. Give On. global online community, Medtronic Philanthropy will donate $10 to Project HOPE to help ensure that medical technology is available in underserved communities around the world.2.
Apply or nominate The Bakken Invitation Award recognizes outstanding contributions of service, volunteerism and leadership around the world. Selected Bakken Invitation Honorees will earn a $20,000 (USD) grant from Medtronic Philanthropy to direct to a charity of their choice, and a trip to Hawaii for a celebration event to meet Medtronic co-founder Earl Bakken.
Applications for the 2016 are now open.
Applicant Criteria: Individuals who, with the help of medical technology, are giving their time and talent to improve the quality of life for others. Nominees must be 14 years or older.Individuals must be using an approved medical device therapy to treat one of the following disease categories: heart disease; diabetes; chronic pain; spinal disorders; or neurological, gastroenterological and urological disorders. All applicants with eligible medical technology are welcome to apply, regardless of device manufacturer.Applicants must have an established relationship of involvement with a legal nonprofit organization for six months or more.3.
Connect with the Community Medtronic also hosts a global online community where all patients can share how they are giving back after receiving extra life from a medical device.
At http://www.LiveOnGiveOn.org, they can connect with other people who share similar health conditions and charitable passions in their hometown and around the world.“What are you doing with your extra life?”That’s the question from Medtronic co-founder, inventor and philanthropist Earl Bakken that inspired the Bakken Invitation. He acknowledges that his pacemaker, insulin pump and heart stents have given him “extra life,” time he uses to support causes he cares about. Earl knows the gift of extra life is powerful. And while each person chooses how to use their extra time, it is his enduring hope they consider how to give back, in big or small ways.
Connect: Website: LiveOnGiveOn.org Facebook: facebook.com/LiveOnGiveOn
Source: Live On Give On
As a 2015 Bakken Invitation Honoree from Sacramento, California. I wish you all well.. and enough. If you need any help with the nominee or application processes, I’ll do what I can to assist you through it.
Honored, privileged and grateful – Grant recipient: @powerofpain International Pain Foundation, your power of pain headquarters.
We are turning pain to power!
InternationalPain.org PowerofPain.org PowerofPain.org
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.
The Body, Mind and Spirit; Humanizing the Soul
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
It Really Hurts to Hurt | Live On. Give On.
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.
It doesn’t matter what caused it, how, or who.
Bracelets; Lockdown; Profound and Letdown
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.
I have no regrets
I pray you don’t either.
To be continued…
Advocacy Director, Healthcare Advisor, Consultant, Speaker, International Pain Foundation (iPain) powerofpain.org/leader-directory
Medtronic Ambassador medtronic.com tamethepain.com
Cureclick Ambassador cureclick.com trialreach.com
SPPAN leader http://sppan.aapainmanage.org
Legislative policy leader
“When no one else believes in you…
.. You better!” ~T
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
CRPS/RSD and Suicide
@CDCgov #CDC #BSC #NCIPC RE: Today’s CDC Public Hearing
I would like to offer that in conversation this last week with Dr. Kolodny and others who advocate against the use of opioid pain care that I attempted to stress the importance of responsibility and education in stating that ”
“So much time proving how bad opioids are when we could have been educating, teaching personal responsibility.” (Twitter only allows so many characters)
A direct reply and quote from Dr. Kolodny
“Education & “teaching personal responsibility” will not make opioids less addictive or more effective.”
Already in today’s call responsibility has been spoken of as well as education several times. He came on and mentioned Guiding physicians. Isn’t guiding educating?
Other therapies can potentially be more harmful, anti depressants, anti seizure medications for the treatment of chronic pain, such as Cymbalta,
Neurontin, Nortriptyline, Amtriptolyne and similar medications also have misuse and abuse potential. When there is misuse, abuse and Overdose is already likely. Surgical intervention is contraindicated in patients with nerve damage, neuropathies, CRPS/RSD. Some of these opioid overdoses were in part due to other medications, mixtures and alcohol, not solely opioid. Integrated and functional restoration programs are important, but few insurances at all, cover them.
Can we try not to stress the decline in white people falling to addiction, when we didn’t seem to be as concerned about blacks, or minorities. many were like, oh well, let them kill themselves, calling them stupid. We’re your kids stupid? I think not. I find it disheartening.
People were people all along. Also personal responsibility is directly related to opioid overdoses. If these children or adults didn’t understand the risk, or what the medication may cause, then education was absolutely necessary by parents, family and spouses first and foremost before the medical community. It becomes a mutual responsibility. Not only the doctor who prescribed it.
If they can’t stop, it’s our responsibility to intervene on their behalf. and attempt to save their lives before it’s too late.
Pain is physical, and pain is emotional. Physical pain seeks quality of life, the emotional pain, those against opioid’s seek comfort for
their loss. Pain doesn’t discriminate.
Physiology also plays a major role in this topic. Lets not sacrifice people for people. Otherwise unintended consequences become intended
consequences. Responsibility in prescribing isn’t a one way street. We seek out the doctor, they don’t seek us out.
~Twinkle V. / Advocacy Director, International Pain Foundation #iPain
Mid Metatarsal Separation | Lis Franc Separation
Chronic pain, opioids, addiction and controversy
A Call for Action- 2016
A Call for Action 2016 by Twinkle VanFleet
Overcoming Challenging Obstacles
Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet
(Several pages and paragraphs not included at this time)
Full details of this entire experience soon enough, including photos. —> Media, news, social media, video, radio, and and… and 🙂
Live On. Give On | 2015 Bakken Invitation Honoree | Pre-Review
Week of January 11, 2016 (never shared)
As I get ready to fly to Kona, Hawaii for the Medtronic Bakken Awards, I’m trying to help myself overcome challenges related to traveling, weight bearing, pulmonary and sleep disorder issues. My breathing has been unstable this week, my head, neck, arms, and even female troubles have poked me in the side.
I had my appointment with my PMD yesterday to ask for considerations that might help me through as it’s becoming harder and harder to stay up on my own and maintain pain levels. I already put in for ADA assistance during the travel and at the hotel. Yet, I won’t allow myself to be confined to a wheelchair while there, so I’m carefully pacing myself so that my legs carry me. My Medtronic Spinal Cord Stimulator has been my pill for 10 years. I’ll be able to adjust for optimum relief, but to do so also means that I have to either not be on my legs/feet at that time or not raising my settings for added comfort. I learned a long time ago how to get the best out of it for me. I’ve also learned that there are times I have to trade relief for walking and I can’t always have both at the same time. I can set my stim to numb me, but because I am one of the lucky ones whose stimulation does reach the toes, increasing this setting can knock me off my legs. I reserve this for non weight bearing pain relief. This is not an adverse effect, but a plus and benefit that has to be noted and chosen to best fit my time and place.
My Auto Servo Ventilator is too big and quite heavy to carry, so I may have to go without it. Still working on that. Otherwise I’d be traveling with 2 medical devices and have little room for anything else.
At this time next week, we’ll have already landed and be apart of the meet and greet with each honoree, Medtronic and so many others. I’m looking forward to representing Power of Pain Foundation as the new International Pain Foundation, myself as honoree, each honoree for what they have also accomplished and given, advocacy, volunteering, my family, my closest friends, and Dr. Earl Bakken and Medtronic Philanthropy.
There are a few wonderful people and establishments I want to say thank you to for being apart of this with me.
The International Pain Foundation (IPF) #iPain – Previously known as the Power of Pain Foundation. http://powerofpain.org/
Sacramento Pain Clinic – Dr. Michael Levin – Since 2004. Not just a Pain Management Doctor, but a patient advocate going above and beyond his own job for his patients.)
Jacob Chopourian, Therapy Representative, Pain Therapist, Medtronic Inc Neuromodulation, Sacramento, California. www.medtronic.com
(Jacob has been part of my surgical team. He’s also adjusted me as needed. When I had my 9 year battery replaced I donated back to Medtronic my carrying bag, handheld stim (my stim) case, charger, hip straps, antenna, and manuals so that someone who needed these items in whole or in part could have them. Jacob came to my home to pick it up. Amazing man.)
Katie Tamez, Clinical Specialist, Pain Therapy, Medtronic Inc
Neuromodulation. Sacramento, California. www.medtronic.com
(Katie has worked to fine tune me, too.) I’ve no longer needed the 3 programs I started with many years ago, sitting, walking, sleeping. I use a single program with pulse. Wonderful lady.)
Compass Center for Functional Restoration – (Dr. Michael Levin MD) Rick Wurster MSG, MPT, BCIAC http://www.sacpainclinic.com/compass.php
(The center that taught me all there is about pain, physically, emotionally and psychologically. How to live with it using the mind, spirit and body to overcome flareups and maintain a modicum of sanity. Because of them I’ve been able to teach others what they taught me and find some joy and laughter in pain.)
Western Dental – Elk Grove Florin Road, Elk Grove, California
Dr. Tooloei, Staff.
You did great. Thank you for trying before I left for Hawaii. Trying meant enough to me.
Trudy Thomas, Featured BlogTalkRadio Host of the Living with HOPE Radio show on the Body, Mind and Spirit Network.
So proud of you and all you’ve given, selflessly. Happy that we have each other and our friendship survives the things we can’t do anymore.
Honored to have been both your co-host and guest speaker and warmed that you will always be family. Thank you for being all that I can count on as honorific leader/admin of my group. I love you!
Roy, MD Junction – http://www.MDJunction.com (Honored to have lead your Reflex Sympathetic Dystrophy Support Group for years.
Glad to have lead the ADHD support group on behalf of the children and parents who needed someone to oversee it. Pleased to still be a Senior Member and
MDJ Advocate. Love you all!)
Barby Ingle, www.BarbyIngle.com
(Together we can! Together we will! And together we are! Through MDJ and Trudy we found each other. I’ll forever remember the ones who cherished me for cherishing them. All 3 of you! Onward I go with #iPain. I love you!)
My Mom and Dad(s) (I know my dad is watching over. Gone since I was 22. My mom and dad was married 25 years when I closed his eyes. My mom and dad have been married 20 years and dated prior to that. So Mr. Don Tresca has been my father just as long as my birth dad was. I pray I’ve honored them all evenly and fairly as their daughter. I love you!)
Erik, Kharisma, Rikki, Kurtis and De’Mantai (my 5 lights). (Awards and recognition is great but not if they are seemingly meaningless to those that it should have mattered most, too.
There’s so much I’ve advocated for on your behalf’s that you’ve never even seen. I know that it all gets stale at some point but if you only knew it was never more for someone else than it was for you. Seek and you shall find. love you! Ohana.)
I’m so glad Daddy saw, felt, and knows now. Sometimes it takes a miracle and that miracle came. It’s all good. Ask him ~winks
Annie-Marie Garcia (30 years! Time in between where we had gaps because life does that with work and loss. We don’t want to add burden to those we love or stomp on someone else’s, okay. That’s what we tell ourselves at least. I’m glad I got you now in the illness you should have never ended up with. I wish I was there when you were first going through it and if only I had known. Lets never let anything separate us again. For you and I, we have something special, we can see each other every day, or have weeks, months or years go by, but we always know that when it comes down to it, we are the ride or die. I love you!)
Maryann Kupidlowski Stafford (My sister since our babies were babies. Young teen daughters. If we weren’t there together we would have never met. Your curiosity, my extended learning, teaching. We both did, and we both gave, mine was just for extending natural order A decade? 12, 13. Time flies. Here we are moving forward in light, love and tomorrow. I love you!)
PK Saint-Amour (Bruja, pain, strength and the sight. Light and the “F’off. I so love you for being courageous in all of it. I’m so glad that you’re my sister in knowledge and fight. I love you!) https://www.facebook.com/groups/InvisibleWarriors/
Eileen McCready (A long time now too, background, foreground, compassion and understanding beyond pain. Sister of mine, always. I love you!)
Saskia Hubelmeijer (My international sister who does all she can in the Netherlands despite pain and hardship, and for America, too. Who’s assisted in leading my group since 2011, as formal admin and informal I love you!)
Billy Rose (Thank you brother for leading light and love above pain and hurt for all people. You demonstrate what the world needs more of and you are providing the change needed to overcome it all again) I love you!
The Council (We are who we are and one day when the earth is over, or death takes us, we’ll still be us, together, teaching, giving, inspiring, awakening those asleep all in their own time) I love you all. http://www.councilofenlightened.org/
The Sacramento News & Review (For featuring my voice and passion over 20 years ago) November 17, 1994, Speaking Out Edition) https://rsdadvisory.com/2015/07/24/sacramento-news-review-november-17-1994-speaking-out/
ECV Chapter 3 (Clampers/widders) E. Clampus Vitus was established in 1849.
(In memory of IRJR http://www.irjr.com/, a great man, friend, Clamper, who many years ago when founded Widders Web honored me with his chat program instead of the one I was using for us, I used his to then honor what he started years previous to that. http://www.irjr.com/widderschat/ While the pages are currently not found and the chat needs updating, I wanted to thank him again. Mr. IRJR is no longer with us.
SPPAN (State Pain Policy Advocacy Network) (I hope we continue on)
(Founded by me, for you)
Refer to December 27, 2015
To be continued!…
The best is yet to come.
Overcoming Challenging Obstacles
Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet below.
The past few years have been a test of strength, endurance, and possibilities amidst constant setbacks to overcome. 5 years after the injury that led to my CRPS, I did go back to school for a degree in Corporate Publishing. At the end of 2006 I took leave to have my permanent Spinal Cord Stimulator implanted and I returned approximately 10 weeks later. Due to not being able to drive any longer, my husband took me and picked me up in between his own full-time work schedule. By 2007, I wasn’t able to keep up any longer. My grandson was born in 2006, too. My husbands first heart attack when he was 37, 2 stent placements, his Diabetes diagnosis, he only used accumulated vacation time for it and returned to work in a weeks time. In 2007, we bought or first home, but he also lost his 13 year career and stability when his company C.S.A.A. (AAA) relocated out of California. I continued to raise awareness for chronic pain, met Trudy Thomas, became a leader at MD Junction’s RSD Support and remained for 3 years. My own support group which I began on My Space in 2003 was moved to Facebook, yet I didn’t move the members with it. I like for people to find us rather than to send out invites or notify. I met Barby through Trudy. My son had a traumatic brain injury in August of 2011 and my husband had a second heart attack within a year. I stayed in the PICU with Ozra for 10 days. In December of 2012 I stayed at the hospital with my husband for the entire 9 days during his quadruple bypass surgery, the first few days I slept in the van. In 2012, I had Gall bladder surgery and in 2013 I had another Gall bladder surgery which included the removal of part of my liver and multiple hemangioma’s. https://rsdadvisory.com/2013/07/17/gall-bladder-fiasco-continued-and-hopefully-the-final-chapter/
2014 my daughters liver disease, our sons birth defect diagnosis from Shriners Children’s Hospital unrelated to his TBI and my surgery to have my SCS battery replaced. Piece of cake, mostly. 2015 started with a bang and 3 weeks of hard Cymbalta, Zonegran, and Clonazapam withdrawal due to WC delaying Rx refills. The other 2 weren’t filled either, but really no effects from them as much as the other 3. I no longer take Clonazapam or get the Lidoderm. It hasn’t been easy, especially when Clonazapam did help and pain management medication was and is already at the lowest minimum. I already do all that I can to minimize my own agony and I practice these coping strategies each and every day. My husband just had surgery to repair a torn shoulder a few months ago and we just learned by MRI he has another tear in his knee. We’re still learning all we can at Stanford for our daughter. Rikki is managing well. My purpose is in helping others, it’s all I’ve ever done one way or another, but it isn’t my passion. I’ve come to realize it can’t be. It’s not the fire flickering about the dancing flames that motivates my spirit to fly. My bucket-list goal survives all this. It’s not writing, I have that. It’s not policy, POP gave me that opportunity again. It’s much deeper than that, at least for me. Our son and oldest daughter are moving in together on the 1st. My man and I will have our home to ourselves. January 26th begins my 16th year. I’m not sure where 2016 will take us, I just know I take a lickin’ and keep on tickin’ … for mine.
Overcoming Challenging Obstacles
“Pain isn’t in our head, but it is in our brain, and our minds. Pain is sent from the spinal cord, sending messages to our brain, back to our spinal cord and up and down those nerve pathways. Pain signals reach our endorphins, limbic system, https://www.dartmouth.edu/~rswenson/NeuroSci/chapter_9.html hypothalamus, where they then affect our emotions and other bodily functions. http://www.medicinenet.com/script/main/art.asp?articlekey=10812
Functional restoration afforded me lessons and insight to be able to push on. Sometimes we already realize these lessons for someone else, but when it’s us, we don’t recognize it the same, we change, unless we change us back.
It’s a daily process to overcome additional challenges brought on by chronic or intractable pain. It’s moment by moment at times. Having to stop something suddenly to practice breathing exercises to decrease a stress situation brought on by either emotion or a spike in pain, bring a rise in blood pressure down, use focal points, imagery or going to my “happy place” in my mind to ease myself.
“I will walk, when I cannot walk I will carry myself, when I cannot carry myself, I will fly” ©2009-2015 Twinkle VanFleet/@rsdcrpsfire Written while attending Compass Center for Functional Restoration
I began recording both my P & E. I tracked my “pain” level and my “emotional” level using the same Numeric Rating Scale. The 11 point 0 – 10 scale where 0 represents “no pain” and 10 represents “worse pain imaginable”, “as bad as I can imagine” or unimaginable. I don’t do this anymore because I’ve learned to have the awareness without tracking, but for example at the moment I logged, my E/emotions/stress was an 8 and my P/pain/physical was a 5, I would eventually learn that my pain level would most likely rise anytime. I had to use my cognitive tools right away to reduce my stressors in order to manage the physical pain. I discussed this concept at MDJunction.com when I was a group leader in the RSD Support Forum in 2009.
Life itself can be hard, add pain to it, and it’s even harder. It can be managed with the right tools. It’s never going to be perfect, but we can make it as comfortable or as tolerable as possible for ourselves. Removing or decreasing triggers that instigate pain have eased me. I can’t watch the internet all day. It’s not because I don’t love or care for everyone. It’s because there are pain triggers everywhere. When we see images, graphics, memes of illness or disease scrolling by, especially our own, a trigger can occur. I’ve learned over the years to recognize this. I have the awareness to understand that I can be a contributing factor in my own discomfort.
I never went to preschool and Kindergarten was only for a week or two. I started school in the first grade. I was taught at home and I was reading at advanced levels by the age of 5. My comprehension and spelling ability was always above average. While I either suppressed it or just didn’t care to acknowledge it, I did go to special classes in the first and second grade because I couldn’t pronounce the letter’s S and T in words and sentences properly. I was a critical thinker immediately in life. http://www.criticalthinking.org/pages/defining-critical-thinking/766
By the time I got to my 4th elementary school in the middle of the school year in the second grade, I didn’t have to tell anyone I went to the classes with the special ones. Those new kids and that neighborhood became the ones I grew up with until I left Sacramento in October of the 9th grade to move to L.A. County for my dad’s job. The rest of that year carried with it a bit of insecurity. I started Drama at my new high school and as a Junior I was in second year advanced drama, speech, debate and thespian clubs, involved in school plays, in chamber singers for a while, I swirled the baton too, but chose my priorities and kept to the one’s I still use today. By the middle of the 11th grade I was off to the high desert where my parents bought a home. I’ve been in 4 high schools, 2 Junior high’s due to the district split and several elementary. I learned to adapt young. I may not like it, but I do it fairly well. I’m a survivor of repeated childhood molestation and indirect physical and emotional abuse.
I’ve been an Empath http://themindunleashed.org/2013/10/30-traits-of-empath.html for as long as I can remember. I can vividly still remember leaving my teething ring on the back metal bumper edge of my dad’s best friend’s pickup truck and them driving away with it. I’m hypersensitive to people, places and things sometimes to my own detriment, yet I’m also a no-nonsense girl. I’m inclined to the natural order of things, including man and woman, but I’m not a doormat. I love my crazy and he does, too! Why? Because it’s really not all that crazy, I just like to have it appear so in the midst all the uncertainty in life. Laughing is the best medicine of all. If I can make you laugh, give you something to laugh at even if it’s at my own expense, I’m thrilled to have been of service.”
Empathy Vs Sympathy
Sure there are times I think “Dang, no one gets it!” I don’t mean in everyday situations, I mean in my critical thinking. Those who are on the same page fear agreeing openly until my thought, reasoning, even an educated statement that I make is validated by someone with high education, authority or status. By that time I really don’t need the care, concern or acknowledgment. I might have needed it when I was no one to be acknowledged for. No one will ever know in these situations because I’ll not ever treat them any different and there isn’t any animosity, but there is recall. Why? Because everything we do or don’t do to another person makes an impact on them. Those impacts influence the rest of their lives by accumulation in decisions and choices. This includes my interaction with other people.
By the time I was in the 4th grade I was in the MGM program. At that time called Mentally Gifted Minds. My 9-year-old grandson is currently in the Gifted and Talented Education Program (G.A.T.E.).
During the 4th to 6th grade 2 of my class periods were reserved for tutoring the NES (Non English Speaking) students who just joined our Country from Vietnam, and other Southeast Asian communities. I was 8 years old when I began the 4th grade. These years were 1975-1977/78. Due to being bright enough to be a student teacher at such a young age, I missed normal class subject time; I began to fall behind in math studies. My mathematical education is only that of general knowledge. I held enough that I was promoted to General Manager for a Restaurant by the time I was 24.
I started college when I was 15 in the high desert of California. Law and Acting. I studied both Fundamentals of Crime and Delinquency and Theory and Practice of Acting. I loved being a minor, non-adult, in an adult law class. I loved that my mind was evolving, but it was at a pace others couldn’t keep up with. I loved learning by law enforcement mentors and the few things I participated in to grow and develop lifetime strategies for. I’ve been fond of the Law, Sociology, Philosophy, Theology, Theosophy, The Human Mind, Psychology, Enlightenment, Consciousness. Alternative Lifestyles, Natural Order and the last decade or so Pain Psychology. I like various other topics relating to each of these, too. When I indulge in a book these are the things I enlighten myself in.” Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet (Currently unpublished in its entirety) ©2015 Twinkle VanFleet, Overcoming Challenging Obstacles. All rights reserved.
(Several paragraphs have been removed from the original for this share)
It really is a multi-disciplinary approach to pain care and taking an active role in our own overall well-being that makes the difference between making it or breaking it. Even if we have to fake it to make it to get there.
Sacramento News & Review November 17, 1994 | Speaking Out
I’ve spoken about my diverse advocacy efforts prior to chronic pain, yet never really produced much factual information. 21 years ago, I was featured in the Sacramento News & Review’s Speaking Out edition. My letter is what got me there. While I don’t have that letter on hand at the moment , I’m very much looking forward to sharing it when it’s located. I do have the following…
The American Family Association instigated a ban on advertising which was located in the back pages of the SN&R. Today it could have been considered both an equal rights issue against certain alternative lifestyles and free speech censorship, but back then it was just hateful and discriminatory.
Of 11,000 signatures in support, 11 individuals were profiled. I’m one of those 11 and the first on page 28. My last sentence is in reference to other’s who shouldn’t have been suppressed for their own rights to publish or receive publishing.
My husbands support, our signatures.
The date, November 17, 1994.
Twenty years of editorial excellence
FREE SPEECH ISSUE: Our November 1994 issue marked the culmination of a five-month censorship battle the Sacramento News & Review was engaged in with a right-wing group called the American Family Association.
I’m honored to this day!