iPain Heroes of Hope – iPain Foundation

2016 iPain Hero of Hope Nomination Categories

http://powerofpain.org/ipain-heroes-of-hope/

ipain hero graphic

HERO of HOPE iPain Awards

Melanie McDowell Advocacy Hero of Hope Award

iPain Foundation presents the Melanie McDowell Pain Advocacy Award. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy and pain conditions. This could be within the field of research, education, awareness, or patient assistance.

Caregiver Hero of Hope Award

Caregivers represent service in areas such as nursing, certified nursing assistants, social services, certified medical technicians, therapy, activities, housekeeping, food service and volunteers. We honor these people who give of themselves and make a difference in the lives of those they care for in long-term care.

Corporate Support Hero of Hope Award

This person or group is recognized for being innovators & leaders supporting daily living with chronic pain disease conditions. This can be research for daily living aids, drug development, survey data collecting. Specific or non specific research for effective treatments in the chronic pain community.

The Nerve to be Heard Hero of Hope Award

Nominations are being accepted for those who Have the Nerve to be Heard. This person has been recognized for bringing awareness to the challenges of living with chronic pain in national or international media. Nominees could include patients, patient advocates, celebrity, legislators, professional Olympic athletes, etc.

Nominations for 2016 Hero of Hope awards are now open.

Thank you all for nominating someone who has made a positive difference in your life. We all know someone who has made a difference.  Whether its your life or someone close to you, we all make a difference. Nominations for people who are making a significant contribution within the field of research, education, awareness, and/or patient assistance are now open.If chosen to move on to the next round you will be notified and your nominee will be notified.

Additional information may be requested as needed by our panel of judges Nominations accepted between April 1 and June 30, 2016 Finalist chosen by iPain Gala Committee by July 15, 2016 Recipient will be chosen by the iPain Board of Directors between by July 31, 2016

Award winner will be announced in early Aug. 2016

Source: iPain Heroes of Hope – iPain Foundation

melanie-mcdowell-award-winners-previous-award-recipients1

Previous iPain Award Recipients


Please use the form above to formally choose your award nominee(s). You may nominate as many of your favorite Heroes in either categories as you like. There’s lots of Hero’s out there, show them that you recognize all they do for you, and others.    ~Twinkle

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Death: Overdose or Suicide?

Dont Say...If I had anything worth betting, I’d bet that many of the documented opioid related overdose deaths were suicides.

How dare I say such a thing? Because in either circumstance the people who should have known better, didn’t. Why didn’t they know? Because they didn’t want to.

No one wants to acknowledge that their child, spouse, parent or partner has a drug problem or is at risk for misuse or abuse and no one wants to believe that even those who appear the strongest, laughing, joking, caregiving, keeping it together for you, would ever take their own lives.

A person seeks medical care to gain something; pain management, acute or chronic, or to manipulate for medications they don’t actually need, but want.

Some people fall through the cracks of not only the medical communities, unintended consequences, access to care, emergency services, but families, too.

I’ll leave this post short and simple.

Ponder that!

National Pain Strategy PAINS Collaborators Meeting Recap – COMMUNITY PAIN CENTER

National Pain Strategy PAINS Collaborators Meeting Recap

By Barby Ingle, Power of Pain Foundation President

On June 29 and 30, 2015, the Pain Action Alliance to Implement a National Strategy (PAINS), a group of over 100 pain collaborators and stakeholders, came together in Washington DC to discuss the National Pain Strategy (NPS). The purpose was to provide attendees an opportunity to discuss the NPS and find areas of agreement on next steps, collaborations, priorities, and to hold accountable those responsible for implementation.As the president of the Power of Pain Foundation, I was invited to participate. I went into the meeting with some preconceived notions based on little happening since the Institute of Medicine’s report in 2011 and didn’t expect much to be accomplished. To my great surprise, the meeting exceeded my expectations. I left the meeting feeling that a path toward implementation of stronger access to care issues was clarified as a result of the meeting. I am excited to be one of the attendees present that will be helping move a chronic pain agenda forward, making a difference in the lives of those living with pain.The goals of the meeting were to encourage collaboration among key pain community leaders, to promote the NPS report and build enthusiasm for it, and to facilitate conversations about how to move forward to implementation of the strategy outlined in the report.For me, the meeting clarified the path ahead for the NPS in terms of priorities,implementation, next steps, funding,leadership and accountability. One of the unintended outcomes from the meeting was the consensus to support the messaging of the Chronic Pain Advocacy Task Force (CPATF). The CPATF is a group of 17 consumer advocacy groups convened by the State Pain Policy Action Network (SPPAN), which is a program of the American Academy of Pain Management (AAPM). As a founding member of the CPATF and the representative of one of the 17 groups involved, I was very proud to see that our work was recognized by this larger group of collaborators and stakeholders. As agreed upon, the core messages are: Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.Chronic pain is both an under-recognized and under-resourced public health crisis with devastating personal and economic impact. Effective chronic pain care requires access to a wide range of treatment options, including biomedical, behavioral health and complementary treatment. Denying appropriate care to people with chronic pain is unethical and can lead to unnecessary suffering, depression, disability, and even suicide.

Read the entire article at:

Source: National Pain Strategy PAINS Collaborators Meeting Recap – COMMUNITY PAIN CENTER

Bracelets; Lockdown; Profound and Letdown

Cross-posted from February 19 at 12:43pm

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)
Myoclonia
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…

Sincerely,
Twinkle VanFleet,
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
Founder- CRPSA

TwinkleV Feb 23 2016 2

Twinkle V. February 23, 2016

“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…

Yourselves!

The Travesty of Delays- California Workers’ Compensation SB 863 and AB 1124

https://www.facebook.com/notes/twinkle-vanfleet/the-travesty-of-delays-california-workers-compensation-sb-863-and-ab-1124/10153777634894774

CRPS/RSD and Suicide

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

January 28 at 11:48am

@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

https://rsdadvisory.com/2015/12/21/mid-metatarsal-seperation-lis-franc-seperation/

Chronic pain, opioids, addiction and controversy

https://rsdadvisory.com/2016/01/25/chronic-pain-opioids-addiction-and-controversy/

A Call for Action- 2016

A Call for Action 2016 by Twinkle VanFleet

https://rsdadvisory.com/2015/10/14/a-call-for-action-2016/

Overcoming Challenging Obstacles

Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet

https://rsdadvisory.com/2015/11/24/overcoming-challenging-obstacles/

(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.)

http://www.sacpainclinic.com/sacpain.php

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.

http://www.blogtalkradio.com/thebodymindandspiritnetwork
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.

http://www.mdjunction.com/reflex-sympathetic-dystrophy

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/

https://www.newsreview.com/sacramento/home

ECV Chapter 3 (Clampers/widders) E. Clampus Vitus was established in 1849.

http://ecv3.net/    http://www.ecvgazette.com/

(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)

RSD(S)-CRPS Advisories

(Founded by me, for you)

—————

Refer to December 27, 2015

https://rsdadvisory.com/2015/12/23/twinkle-vanfleet-2015-honoree/

To be continued!…

The best is yet to come.

Dr.Bakken and Twinkle VanFleet2

Twinkle VanFleet, 2015 Bakken Invitaton Honoree, Sacramento CA, #iPain, with Dr. Earl Bakken Medtronic Co-Founder, Kona Hawaii. Awards reception. January 16, 2016.

 

http://bakkeninvitation.medtronic.com/honorees-winners/

http://bakkeninvitation.medtronic.com/honorees-winners/2015/twinkle-van-fleet/index.htm

http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=1822170

http://newsroom.medtronic.com/phoenix.zhtml?c=251324&p=irol-newsArticle&ID=2122319

http://www.nasdaq.com/press-release/the-medtronic-bakken-invitation-award-honors-12-patients-from-around-the-world-for-giving-back-20151214-00566.

http://www.otcmarkets.com/stock/MDT/news

 

 

 

Ohana (For Dr. Earl Bakken)

by Twinkle VanFleet

Twinkle VanFleet 2015 Bakken Invitation Award Honoree_1

Front and back

He validated the spirit
And it’s heart
And restored the breath
Of a nearing depart

Acknowledging the path
And it’s hope
Diversity rising
It’s a slippery slope

Catching the reason
Determination and light
In giving to others
The fire and flight

for…

Life, love, and empathy
We have to discuss
Drowning
Counting
On all of us

7, 8, 9
Losing time
Sharing
Your paradigm

Break down,
Nothing on me
Fight and fall,
Nope pain can’t stop she

Crazy, maybe, perception
Not really though
Trinity, affinity
Visions and missions to lead for

She’s rising,
They know she(‘s) flying
As above, so below
The gift of devising

Got you
Got us
Got me
superfluous

Honi; spirit and power
The honoring art
Ha; the breath of life
A spiritual kiss of the hearts

Who could have known
It wasn’t alone
Ohana means family
Family is home.

For Dr. Earl Bakken, Medtronic Philanthropy, #LiveOnGiveOn

With love and admiration on behalf of myself and #iPain  www.powerofpain.org

Mahalo

©2016 Twinkle VanFleet/Golden Rainbow Poetry/All rights reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/  May be shared. Permission required for any other use.

Ohana means family. Family means no one left behind… or forgotten.

Mid Metatarsal Separation | Lis Franc Separation

 

“Lisfranc joint injuries are rare, complex and often misdiagnosed. Typical signs and symptoms include pain, swelling and the inability to bear weight. Clinically, these injuries vary from mild sprains to fracture-dislocations. On physical examination, swelling is found primarily over the midfoot region. Pain is elicited with palpation along the tarsometatarsal articulations, and force applied to this area may elicit medial or lateral pain. Radiographs showing diastasis of the normal architecture confirm the presence of a severe sprain and possible dislocation. Negative standard and weight-bearing radiographs do not rule out a mild (grade I) or moderate (grade II) sprain. Reevaluation may be necessary if pain and swelling continue for 10 days after the injury. Proper treatment of a mild to moderate Lisfranc injury improves the chance of successful healing and reduces the likelihood of complications. Patients with fractures and fracture-dislocations should be referred for surgical management.

The Lisfranc joint, or tarsometatarsal articulation of the foot, is named for Jacques Lisfranc (1790–1847), a field surgeon in Napoleon’s army. Lisfranc described an amputation performed through this joint because of gangrene that developed after an injury incurred when a soldier fell off a horse with his foot caught in the stirrup.1,2 The incidence of Lisfranc joint fracture–dislocations is one case per 55,000 persons each year.2,3 Thus, these injuries account for fewer than 1 percent of all fractures.2,3 As many as 20 percent of Lisfranc joint injuries are missed on initial anteroposterior and oblique radiographs.2–4

Lisfranc joint fracture–dislocations and sprains can be caused by high-energy forces in motor vehicle crashes, industrial accidents and falls from high places.1–3 Occasionally, these injuries result from a less stressful mechanism, such as a twisting fall. Since Lisfranc joint fracture–dislocations and sprains carry a high risk of chronic secondary disability,2 physicians should maintain a high index of suspicion for these injuries in patients with foot injuries characterized by marked swelling, tarsometatarsal joint tenderness and the inability to bear weight.” Lisfranc Injury of the Foot: A Commonly Missed Diagnosis (Para 1, 2, 3) http://www.aafp.org/afp/1998/0701/p118.html

CRPSRSD Awareness Twinkle V. @rsdcrpsfire - R Foot Nov 10, 15_1

Twinkle V. CRPS 2 November 10, 2015 DOI 1/26/2001

From misdiagnosed to a hell ride I’m still on, I’ve managed to find a glimpse of heaven in it all because I do work with me so that I’m not a total disappointment on myself or society. A bit over a week ago I was banned from Facebook. I had to provide documentation of proof of identity to return. I could have declined, but I was in a tight spot having a group there. Facebook’s policy is that everyone is to use the name they are known as offline, on Facebook, so that others know who they are. Sure we might say well if I’m known as this or that I should be able to use this or that. I hope people stay off me now. I’m me and I’m tired of having to prove it. We all know how many incognito accounts are on there. How many fake names, symbolism. People who have more than 3 accounts of various sorts. I have one account, I’ve never had another. Ever! I’ve always used my name. Once I was blocked, I had to verify me before being allowed full account privileges again. I was temporarily granted access back once I sent the document.

I’m Twinkle, I’m verified, (and proven myself yet again) and I hope that now that I have, who ever reported me, and each of you who want to refer to me as something different will either leave me be or respect that I haven’t ask you the same, or violated your privacy, or attempted to humiliate you, but instead realize that your actions have impacts.

Perhaps I should ask for your identification online and in person.

Between the diagnosis’ obstacles, I still manage to put in a few hours a month volunteering because it’s important that we find consistent tasks and daily agendas. When I’m not doing those things, I’m inclined to spend time in creative arts, things that have nothing to do with chats, Facebook, or social media until which time I might either post to share or keep to myself for another day. I love music and words and I love pieces and parts of all of it. I know the time is coming I won’t be able to stay up on my own anymore. Doze off all day long because you have the excessive daytime sleepiness and narcoleptic episodes, but you don’t sleep at night because you have the complex apnea, your brain doesn’t even send the signal for you to breathe, and your machine forces you to breathe all night long. None of which counts the numerous times you wake too because your spine has deteriorated, your legs are CRPS crazy, your arms fail you, and you just want to get comfortable. You have at least 10 + other diagnosis (internal and organ) and refuse to be beaten!

Each time the foot reaches the ground, pain isn’t just pain, you’re immediately in your head (coping), no reason to whine or complain. It certainly isn’t a reason to want to use pain medication, but it’s the very reason I know pain, understand it, and feel it for others beyond what I knew prior. It’s the very reason I do what I do. Remove the survival, you remove the very reason for living. Only so much can be done solo.

So when I say I did that first near 9 months of intense PT just to have “learned” to walk again? Truth! When I say I push through it each day? Truth! When I say intractable, forever? Truth! The Lis Franc screw remained for 6 months before removal and rehabilitation. My journey hadn’t even started yet at that point. Even in the still, you have to use your mind to bring it down. Every day is ongoing physical rehabilitation with cognitive assists.

The only chance I had was the one I gave myself.

I think I’m doing pretty darned good for doing so darned bad.

 

Mid Metatarsal Separation/Lis Franc Separation

http://orthopedics.about.com/cs/footproblems/a/lisfranc.htm

Lisfranc Injury of the Foot: A Commonly Missed Diagnosis

http://www.aafp.org/afp/1998/0701/p118.html

Lisfranc Injuries

http://www.foothealthfacts.org/footankleinfo/lisfranc_injuries.htm