Support

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

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

It’s life and it’s living.

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

 

2.5

Not using home access for the internet for a couple of months now has been interesting since everything is social media and email, anymore. Web based. I have quite a few articles/essays/pieces to share, but I’ll wait to post them for now. I’ll probably only ever get 3 of a dozen or so up anyway. They were written offline as ability permitted. I generally don’t open the laptop at home.

I’ve been doing Bowen Therapy, each Monday, for about 4 weeks now. Also known as the Bowen Technique. I’ve done this before, but not to this extent. I’ve also been having  LLLT at the same time. For more information on Low Level Light Therapy, you can also refer to NCBI or using the search terms. Having done a clinical trial for LLLT in 2011, I’ve been privileged to be able to have this treatment on several occasions since.

Since I’ve been off those 3 medications in their entirety, I’ve lost nearly 35 pounds in 10 weeks. That time  line also coincides with that thing I did, and a second attempt which I’ll keep right there at this time. Last week, after, I received my certification to help down the anxiety highs. Holistically legal. An option I didn’t want to choose for myself, but one I had to make in order to prevent the 3rd time which could be the charm.

I can feel some change in soft tissue damage and related areas in my upper extremities. I can feel a decrease in some symptoms at my hips down to my feet. (Also the covered areas by my SCS, Spinal Cord Stimulator). Headaches, less intense. No matter what level of decrease I get non weight bearing, the moment I step is the rise. I incorporate dance with Yoga though it’s only upper body and sitting. I only do 4 Yoga poses. I’ve done this for years, off and on, but using it as a tool again, 3 times a day.

Really it’s all about finding my center, again. Solar Plexus, Celiac is in bad shape. I knew that before a few tests last week before therapy. Oh it’s a little about Chakras, aligning grounding etc and a bit about the physical reality of the bodily damage itself. The life force. The breath. Chi, Zen and the ‘I’ll heal me, mentality” because  I know no one else can. That includes the medical profession. Besides they are just a tool, too. And one tool that like us, sometimes needs to be replaced.

I’m hyper sensitive. Not be be confused with hyper sensitivity as a medical term. Few would ever know it, yet I don’t just feel, I feel you and me. I don’t just carry emotion, but I carry your emotion. I don’t just feel pain, but I feel yours, as well. I have to shake that off, somehow and I don’t think it’s possible even in possibility without pretending, or lying to myself that I’m not feeling it. Takes us right back to mental health doesn’t it? Fake it to make it until we break it, or rather, ourselves. Every physical and emotional pain learns a coping strategy. Even a crying baby will learn to cope. .. eventually. It’s all in the mind. Our brains can’t feel pain. The only area that does feel are receptors encompassing outside the brain.

At first I thought I don’t want to lose my mind, I haven’t, I’m not crazy, but know what? Yes I do! I want to lose it. All of it. Let it all just roll out from the bottom of my feet and go away.

Things are still ongoing for now. Appointment and blood draws tomorrow. LLLT and Bowen on Monday. I tell you though when life’s harder experiences are constant, you really come out having learned.

Live On Give On | Applications for the 2016 #BakkenInvitation Award now open.

Twinkle receiving award- January 16, 2016

Twinkle VanFleet, Sacramento California. Bakken Award Recipient 2015. Received from Dr. Earl Bakken, Medtronic Co Founder in Kona Hawaii, January 16, 2016.

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

1.

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

Twitter: #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   

 

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!

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  🙂

 

 

First Week of February 2016 – And in Memory of Jim Ingle

 

My block helped nearly 2 weeks. I had the Lumbar Sympathetic Nerve block on January 28, 2016.  I had a reduction from a really hard 8 going in for the procedure to a 4 until a couple of days ago when it started creeping back up. L3 and L4 this time instead of L2 and L4. I was so grateful for this. That’s 40-50 percent of reduced symptoms. When I left to receive that amazing award my medication had been delayed yet again. I was a week without already. My block only covered my right lower extremity so 4 means only that which was blocked. I’m still working on a post to share the Bakken Invitation Award experience. I almost left it all behind and I almost didn’t make it through once there, but I did, and I did. The block eased the flare I left in and came home with, allowed extra midnight snacks for the man, dinners, cleaning, sharing, a little catching up. That really is everything it could have been. I don’t count what I didn’t get from the block, I consider each symptom I get relief from. That allows me an over all number, fairly. I tend to be conservative with the pain scale. The time it lasted wasn’t what my insurance wants to approve it again, but it lasted long enough that I could catch my breath again. Since many don’t want anyone on pain reliever, options are minimal for most of us. Not every option is available in every area and not every option is covered by insurance, therefor, we’re stuck in a trap. I’ve already fallen twice in the last couple of weeks. Staying up on my legs is becoming a another risk. I take so much Ibuprofen for inflammation no wonder my liver is a mess and I need to water my kidney’s in excess to keep them flushed due to diminished function. I didn’t get back on my medication until the 10th day and the night after returning.  Had I not been in a flare, or medication delayed, my block may have helped better. The body trying to recover itself from a sudden change and in a sense shock. The inflammation and swelling was horrible. I had my mouth repaired soon after my block. Still a process there. I didn’t have the grafting done even though the bone damage in my face is an issue, too. I fell asleep 4 times today, just worn. I’m charging my SCS right now, so that I can give me a nice goose me up and numb me down.

Movie time.

February 4, 2016

I fell asleep before posting last evening and woke to learn of a heartbreaking loss.

It is with great sadness that Mr. Jim Ingle, Barby Ingle ‘s dad passed away this morning. Without Mr. Ingle, the International Pain Foundation (Power of Pain) wouldn’t exist. He lost his battle waiting on a kidney transplant and other life saving procedures. He fought for himself to the last second, reaching his son’s home in his own vehicle, even after crashing it, where he passed away with his son and first responders before ever reaching the hospital. Mr. Ingle didn’t have a phone to call for his own help, the family was trying to have it replaced promptly which also never happened in time.

Photo is Mr. Ingle presenting the Melanie McDowell Award to Dale Lehn 2008 recipient.

The Power of Pain Foundation (International Pain Foundation) presents the Melanie McDowell Pain Awareness and Advocacy Award annually. The recipient is a pain patient or provider who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy pain conditions. Nominations are solicited in the pain community for people who are making a significant contribution within the field of research, education, awareness, or patient assistance. http://powerofpain.org/mcdowell-advocacy-award/

My heart breaks for Barby, and her siblings, who also lost their mom last year. I’m so grateful that I’ve been apart of IPF POP long enough to have been on conference calls with the man himself. Godspeed Sir. Thank you for all you’ve given, all you’ve fought for and for starting this organization in honor of his daughter Barby and memory of Melanie.

 

Jim Ingle preseting the 1st Melanie McDowell Award to Dale Lehn 2008 2016-02-04

Mr. Jim Ingle presenting the Melanie McDowell Pain Awareness and Advocacy Award to Dale Lehn, 2008 recipient.

 

I don’t generally solicit donations, but in honor of the man who not only brought “Power of Pain” to my life via his daughter, but ours, he’s worth it.

http://powerofpain.org/donate-ipain/   A gift can be made in his memory and/or honor – Jim Ingle

Thank you!

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