Suicide

Lecrae- Cry for You Feat Taylor Hill, (You’re clean)

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“Cry For You”
(feat. Taylor Hill)

[Taylor Hill:]
This thorn in my flesh
Is the only thing I got left
And it’s so hard to confess
When everybody thinks you’re perfect

But I cry for you
If you feel it too
And I’ll cry for you
If you show how to lose
The elephants in the room

[Lecrae:]
Take it away, I beg you, take it all away
The pain it causes, it makes me wish I could fade away
If they knew what you knew, they’d probably shun me
I’m surprised you know it all and you love me
I know I break your heart
Body of death, give me rest if my heart stops
Then it don’t hurt no more, can’t get worse no more
Can’t pursue all these desires, it ain’t cursed no more
No more lies about my worth no more
I understand the thoughts of suicide that do reside
But when I stop and think about my family, I feel new inside
I promised I would die a thousand deaths ‘fore I cause them any pain
But somehow I end up killing everything
I cry for you
If you feel a dark, twisted, heart-wrenching, hate-to-see-your-own-reflection
Praying for an intervention, feeling guilt and feeling shame
I just call on Jesus name
Praying daily, can you take away this pain?
Take the thorn away
Still, it remains, I
Feel the same, I
Know that I’m here, but
Still feel insane
Satan would love to see my give up and throw up my hands
He say I’m guilty but You say I’m clean

[Taylor Hill:]
This thorn in my flesh
Is the only thing I got left
And it’s so hard to confess
When everybody thinks you’re perfect

But I cry for you
If you feel it too
And I’ll cry for you
If you show how to lose
The elephants in the room

[Lecrae:]
Yeah, Sunday morning, or Sunday mourning
I woke up dead inside from all the hurt I saw before me
Evil tryna take away my testimony
Starin’ at my phone, feelin’ like a phony
Oh, I cry for you, I would die for you
To escape the pain I feel from all that I’ve been through
I feel it in my soul and in my chest
Take away this ugly thorn inside my flesh
Give me death
But grace is sufficient to start my mission
I’m so far from perfect, can’t believe they listen
But hear a broken man ’til your healin’ happens
And hear a liar tell you truth to bring you gladness
I could never boast in my accomplishments
I can only hope in God with confidence
Opposite of optimist, U and I are consonants
Broken all the vowels, deservin’ of every consequence
Will you cry for me, or will you judge me?
Will you throw stones at my head, or will you love me?
I could never be everything that you wanna see
But crooked sticks draw straight lines, just look at me
(But crooked sticks draw straight lines, just look at me)

[Taylor Hill:]
This thorn in my flesh
Is the only thing I got left
And it’s so hard to confess
When everybody thinks you’re perfect

But I cry for you
If you feel it too
And I’ll cry for you
If you show how to lose
The elephants in the room

Introducing Stronger Than Pain as an upcoming NPO for Suicide Prevention and Relief

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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: info@strongerthanpain.org

Every donation counts toward helping us help you, every like is worth just as much.

http://strongerthanpain.org/donatenow/

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.

Stronger Than Pain Logo

In Loving Memory of LaShawn Velasquez A.K.A LaLa

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Last week I began sharing photos straight out of Hawaii. My daughter and her local best friend Jessica went to Hawaii to be with LaLa. LaLa lives in Hawaii via her Military wife. In the early morning hours of May 21, 2017 I received a horrifying call from my daughter Kharisma. I don’t think I’ll ever forget the screams into the phone. LaLa was being placed into an ambulance. Soon after she was pronounced deceased even though the impact already took her. I haven’t been able to talk about it in the details everyone wants. None of us can.

Bring LaShawn Home

https://www.gofundme.com/bring-lashawn-home

If you can’t give to it, can you share it please?

I wrote this for her, her family, those who love her and for all the LaLa’s out there.  It wasn’t about me.

Twinkle VanFleet

May 21 at 9:11am ·

My name is Suicide. People don’t know me they only know of me. I’ve kept my identity secret because of the shame my name reflects onto others. There are many who share my name and like other names there’s more than one of me. I’m not unique. I’m unique in who I had become. I’m beautiful and I ride or die in a world filled with pain and chaos. I sometimes leave behind the ones I love a little too much for hope in something better, to put my own hurts behind me or to help from somewhere else. Other times the decisions and choices I make leave lifetime scars that I didn’t consider when I…

For this I’m sorry.

My name is Suicide and it wasn’t your fault.

~Twinkle VanFleet
Sunday, May 21, 2017. 8:10 a.m. PST
#Suicide#Awareness

The next day I shared this via YouTube

My Name is Suicide

What should have been nothing but an amazing vacation of a lifetime became something my daughter will never forget seeing. I couldn’t get to my own child in living hell. I can’t imagine another mama not being able to get to hers in death.

When we can teach people that depression, suicidal ideations and attempts shouldn’t be stigmatized as voodoo we might be able to save lives. No one reaches out. Those that do are told they’ll be fine, suck it up. What they really mean is shut up because you embarrass them, shame them, or they are unable to understand fully why you reached out. Some people never will. Other’s may but are not believed. Yet there are others who shout it out as a cry for help or attention. Whatever the reason it becomes another persons fall. Just like stigma in chronic pain, medications, suffering, abuse, misuse, overdose. Judgement! LaLa didn’t overdose.

LaLa fought a chronic pain disease. She wasn’t apart of your community. She was apart of mine.

Hawaii May 16-21. Kharisma came home on the 24th.

You’ll see that my shares on Facebook went from incredible happiness to overwhelming sorrow.

She’s a warrior, too.

LaLa and Twinkle November 18, 2016

 

Photo: LaLa and I 6 months ago. After I completed the Gohl Program the first time. I can still remember what we said to each other.

I rode with my husband to take Kharisma and Jessica to the Airport in San Jose CA on May 16th. And the memories began.  They would not have arrived until the morning of the 17th.

At precisely 6:59 a.m PST. 3:59 a.m Waikiki Hawaii I heard the phone ring out of my sleep and I missed it. I pulled myself up, something was wrong. As I redialed my daughter I began making coffee. No answer. I sent her a text: May 21, 6:32 a.m PST (3:32 a.m Hawaii) –> You called? Everything OK?

Everything wasn’t.

I still don’t want to talk about it. I understand it because I was almost someone of it. There are variations. Planned action and immediate uncertain action. Sometimes we want to die and we want to live at the same time yet there isn’t any way out of that final choice we make. Sometimes there isn’t any coming back. It’s only a finale.

LaLa was the first person my daughter ever told when she became pregnant with our grandson. Kharisma and Rikki have been close to her since they were young teens. Ozra has known her since he was 7. De’Mantai all his life. Ozra and ‘Tai have no memories of not having her part of their lives.

Sulma and LaLa spent much time with us here at our home. Coming over to be with Kharisma and having me part of those amazing times together.

I have a lot of daughter’s, some I never gave birth to.

LaLa and Sulma

#Suicide #StrongerThanPain #Breakthrough

 

 

New Years Eve

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My family spent the evening together. It was a last minute, unplanned, lets go out for a bit. Mama’s idea! We had no plans other than to grandson sit if our daughter had any. Ozra didn’t have any evening plans, and Erika a.k.a Erykah had an event to work at 10:00 p.m. I haven’t been out for New Years Eve or New Years Day for many years beyond our children’s home and most years I just slept midnight away. I didn’t want to leave our 10 year old grandson behind and while I might like to party, I don’t. I chose a spot where De’Mantai Xayvier could enjoy the night with us. And that’s what we did. Erik (Massah), Kharisma Anna Magdalena (Maggie), Erykah (Rikki) (and Dan), Ozra (Kurtis) and Austin.

twinklev-and-demantai-xayvier-howard-new-years-eve

Nana and Grandson

Hard to keep up on our names? I know. Kharisma was named after me. Odd right? When I was growing up everyone told me I had a lot of charisma and I was always being told how charismatic I was. I named her for that. And gave her the K. I’ve always liked the unique side of people, places and things, so a C wouldn’t work. I was still a teenager when she was born. I was 18 when I conceived her and she was born when I was 19. Initially our second daughter was to be named Destynee, but I named her after her daddy instead. Erik –> Erika. Our son was to be Atreyu (Son of All) but I named him after his Dad and great great grandfather. Erik Kurtis –> Kurtis Ozra (Ozie). I gave the name Atreyu to another, later. De’Mantai is known as ‘Tai. And then me, I’m called Twink by my family and close friends, but my toddler childhood nickname that I’m still called often and publicly is Ooie. Pronounced 00 ee. oo-ee baby! Then there’s Twinks, Twinkles, and a few others.

So we gathered together for a bit and was home fairly early by 10:00 p.m. Earlier in the day we went home so I could grab that Cymbalta. Being off it was too much! At first I wanted to call it quits since I hadn’t taken it at all in 2 days because I had forgotten to bring it. I’m like, I got this! Well I didn’t. That crap is the devil. At first I only took the 30 mg, but it didn’t stop the feeling of jumping in and out of myself. It’s a hard experience. So about an hour later I took the other 30 and within 2 hours I was feeling better. So today I continued on the 60 and tomorrow I’ll go back to the 30 and hope for the best. I think about 10 days or so to be off it again. My cold is getting better, still have it, but not like it was. Phew! My shoulder is off and on again. Much better than just on.

Going back home this evening after an extended stay at our kids this week. Stayed a little longer because I wanted to minimize becoming sicker for longer when I have things to get ready for. Plus the toilet is torn apart in our bathroom, pulled the entire toilet from the ground and still needed more parts to try to fix the issue. Have those parts now so the man can work on it when we get home. Other repairs and replacements should only take a couple of months. Yay! Once that’s done, I’ll explain and share how other seemingly “impossible’s” are possible.

And with that, you might understand more clearly the last 3 years.

You’ll either be surprised, disturbed or dumbfounded.

 

In any event,

You might finally get it in it’s entirety. No matter how much I’ve told, left open to interpretation or slipped up on, I’ve never laid it all out for what it’s been.

 

In this New Year, I will.

Happy 2017

twinklev-rsdcrpsfire-new-years-eve-resized

#StrongerThanPain

 

 

 

 

 

Cymbalta: Uses, Side Effects, Warnings & Withdrawal Risk

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Cymbalta is one of Eli Lilly’s top-selling drugs, used for treating depression, anxiety, and bone and muscle pain. The drug carries some serious side effects, including discontinuation syndrome with brain zaps.What is Cymbalta? Cymbalta is a popular antidepressant that helps control neurotransmitters and hormones, improving moods and alleviating pain. Eli Lilly manufactured this multi-use, billion-dollar drug, which received FDA approval for alleviating mental and physical discomfort.In 2004, the FDA also approved Cymbalta (duloxetine hydrochloride) to treat depression. Doctors soon began prescribing Cymbalta for a wide range of patients, including those with anxiety, diabetic neuropathy, muscle pain and stress urinary incontinence.In 2007, the FDA added the treatment of fibromyalgia – a type of arthritis characterized by muscle pain, trouble sleeping, and tiredness – to Cymbalta’s label.Unfortunately, patients wishing to discontinue use of the drug often suffer from side effects that impair their health, ones that can last weeks after stopping Cymbalta treatment. These withdrawal symptoms range from headaches and dizziness to suicidal ideation and blackouts.

Cymbalta and Other Antidepressants Cymbalta makes up a major share of the $11 billion-a-year antidepressant market and competes with drugs like Paxil, Lexapro and Effexor. In 2012, it accounted for 42 percent of antidepressant sales.Like Effexor, Cymbalta works as a serotonin-norepinephrine reuptake inhibitor (SNRI). The SNRI drug class deals with norepinephrine and aims to improve energy levels. Similar to SSRIs,

Cymbalta also deals with serotonin levels, which can lift moods.A Top Seller for Eli Lilly Since the drug’s approval in 2004, Eli Lilly has brought in more than $29 billion. At its peak, in 2013, it had annual sales of $5 billion.High Costs for Patients The brand-name drug sells for retail prices of more than $170 a month—making the drug more expensive than many antidepressants on the market. Cymbalta Uses and Clinical Studies Over the past decade, Cymbalta indications expanded to include anxiety, diabetic neuropathy, fibromyalgia and chronic muscle pain. Internationally, the drug is also approved for treating stress urinary incontinence.FDA Approvals The FDA initially approved the drug for treating depression, and within a year approved it for diabetic neuropathy. For diabetic neuropathy, Cymbalta treats pain and tingling from nerve damage. In 2007, generalized anxiety disorder – a condition that more than 6 million Americans suffer from every year – was put on the list.Growing Popularity Within five years of the drug hitting the market, doctors prescribed 2.8 million patients

Cymbalta, according to an FDA staff report. Of these prescriptions, 400,000 were prescribed for off-label uses like nerve pain, musculoskeletal pain and headaches. In 2008, the FDA approved its use for Fibromyalgia. Analgesic properties make the drug also suitable for osteoarthritis.Advisory Committee Meets Because of reports of serious side effects like liver damage and skin disease, an FDA advisory committee met in 2010 to review whether or not the benefits outweighed the risks in the use of Cymbalta for treating chronic pain. Despite this danger, the drug was approved months later for chronic musculoskeletal pain, including osteoarthritis.

Side Effects of Cymbalta Patients taking Cymbalta are often unaware of the potential side effects that may occur, and doctors continue to prescribe it for more uses despite these dangers.Complications for Pregnant Women Birth Defects Skin Disease Suicidal Thoughts Liver Toxicity Discontinuation Syndrome Persistent Withdrawal Symptoms (Brain Zaps)The Institute of Safe Medication Practices (ISMP) published a report describing 48 instances where Cymbalta users suffered from debilitating withdrawal side effects, including brain zaps.While a brain zap is not a precise medical term, many Cymbalta users have experienced the same type of abrupt electrical shock disrupting their mind. They describe the zaps as intense and painful sensations that cloud mental clarity and leave them with shakes, nausea and headaches. The degree of severity can impair a patient’s ability to work, socialize and carry out daily tasks.

ISMP’s reported Cymbalta withdrawal side effects include:Dizziness Brain zaps Anger Suicidal thoughtsWeight gain Paresthesia (burning sensation)Clinical studies reveal that with abrupt discontinuation of the drug, similar symptoms occurred in nearly half of patients. Of those, 10 percent felt symptoms acutely and half continued to suffer from side effects more than one to two weeks after stopping treatment.Many of these patients required hospitalization and also reported nausea, tremors and blackouts.

Read more:

Source: Cymbalta: Uses, Side Effects, Warnings & Withdrawal Risk

 

Stress’Less

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Definitions of stress include the physical pressure, pull, or other force exerted on one thing by another; strain, mental, emotional, or physical strain or tension. In physiology, stress is defined as; a specific response by the body to a stimulus, as fear or pain, that disturbs or interferes with the normal physiological equilibrium of an organism. In medicine: A physical or psychological stimulus that can produce mental tension or physiological reactions that may lead to illness. Stressless is then the opposite of the above, having no stress, without.

Image Credit by Ozra September 24, 2015 Bay Area CA_1.

Image Credit by Ozra

 

Included in my letter of resignation to the International Pain Foundation was that “Stress is my weakness” right now. It had become my weakness since January of 2015. I had come to realize a long time ago that stress increased physical pain and uncontrolled physical pain instigated anxiety highs for me. I had struggled on and off with bouts of depression. Prior to this year diagnosed with mild recurrent major depressive disorder secondary to the injury that led to my CRPS and a psych sequela.  A confirmed diagnosis of PTSD, which I’ve shared a couple of times over the years, but have not discussed much of. My PTSD isn’t a solo diagnosis for a specific event, but rather multi diagnosis’ for multiple unrelated events.

It’s been a hell of a year! It’s also been heaven! Can you imagine? The best and the worse, the worse and the best happening simultaneously over a short period of time? Next month begins a year since that first night I can’t ever erase from my existence. Valentines Day becomes a year to the day, and the 3rd week in April is the second. I’m really only 8 months forward from it all. I really have a way to go in healing.

I think I’m doing pretty darned good for pain having not been addressed until a few weeks before I tried the Gohl Program (October 24th) and the Manual Ligament Therapy performed by Arik Gohl. After transferring my primary care to the Ellison Ambulatory Care Center and choosing the teaching facility so that students could learn from me and I could learn from them, I was sent to a new pain management facility rather quickly. This though only covered my upper body, not my lower. I was now opposite of what I had endured in the many years prior. I had been covered for my bilateral CRPS and SCS, but not for my upper extremities. I had a CT, learned of what had been occurring with my spine, the several new diagnosis’s, started PT, ended PT and I had 2 cervical steroid injections and decided after the program to cancel the 3rd.

Leaving iPain was abrupt and perhaps shitty, deactivating my Facebook account was also abrupt and spontaneous. Heck, declining followup appointments, injections, and mental health care was also on the spot. I know each of the perceptions that can be considered. 1. I’m reckless. 2. I’m Bipolar. 3. I only considered myself. 4. I’m playing games. 5. I’m crazy. 6. Out of character.

Let me help sort these out. 1. I’m not careless of consequences nor am I irresponsible. 2. I wouldn’t care if I was, but I’m not. 3. I considered everyone in those split seconds, including myself. 4. The only games I like to play are slots. 5. I love my crazy as do many others. 6. Perhaps, though it could have been in character all along.

What does that mean? In character all along? Pain, passion, purpose. Compassion, forgiveness, devotion, appreciation, thankfulness, gratitude,and diversity are all strong traits for me as is compliance, submission, and loyalty. Those can sometimes provoke conflict. But then again, I’m a different kind of duck.

As 2013 ended and I couldn’t change what I needed to, I couldn’t make someone else want to live, take care of themselves, after being given new life, or repair someone else’s frontal lobe from damage, or make tumors disappear in another and I couldn’t change the errors of others from a 2012/2013 healthcare related failure for myself, I rose and fell, but got back up each and every time.

Until I couldn’t, until I didn’t want to anymore.

In 2012 I had my Gall Bladder removed after a painful 20 hour wait in the Emergency Department. Acute or Chronic, the wait was painful. When I was taken back, I was scheduled for surgery immediately. I hemorrhaged during both surgeries a year apart.

 

I had never felt judgement in healthcare prior to this second removal. I had never been treated adversely or in any judgmental way. Ever!

A month ago, I would have never considered resigning as Advocacy Director and after being apart of iPain 5 years. On the contrary my only vision was remaining indefinitely.

“Don’t cry because it’s over, smile because it happened.” — Dr. Seuss

Fighting for your own life, while already fighting for others, up close and personal others, in addition to advocacy. And not knowing, or understanding, right in the midst of the end, who to choose, what to choose. Me or them. I can still hear the words that slipped from my lips to him that night. I can see it all so vividly and I can hear my own quivering voice say it to him so powerful that..

(Maybe I’ll share the rest of that another time)

But I survived. And then I survived again. And I was pissed! I had to be who someone else wanted me to be.. still. I couldn’t be unwell, not dangling, and make sure that I didn’t disappoint anyone, pretend it never happened because such events are unbecoming of family matters, social knowledge and sometimes even friendships or that online I had to be talked about in whispers and private calls and that would have all been okay as long as the record was correct. All it takes for accuracy is to ask the question. If someone doesn’t wish to answer it still doesn’t mean to create a scenario.

I was negative for all prescribed and illicit drugs, including all those extra’s screened for. I declined pain care by first responders and I declined pain management upon arrival at the hospital.

Consider that I had not been taking pain meds, opioid related, legal or illegal, benzo’s etc, and once injected in the ambulance there would have been no way to prove I had none of these substances in my system. Not even Marijuana. Understand? I don’t regret the 200 ml bottle of Vodka I finished just minutes before those acts of “I’m done!”. Nope!

All I’ve wanted to do is fight. I won’t go looking for confrontation, but if I’m confronted, hands. It’s really not as wrong as it seems. It just means that I protect my space and my ground.

Stress is down. Leveled.

Without, in regards to the internet.

“The two most important days in your life are the day you are born and the day you find out why.” — Mark Twain

I always knew why, I just didn’t want to know to what extent.

 

https://rsdadvisory.com/2013/05/18/endoscopic-retrograde-cholangiopancreatography-52113-due-to-gall-bladder-removal-fiasco/

https://rsdadvisory.com/2013/07/17/gall-bladder-fiasco-continued-and-hopefully-the-final-chapter/

The Opposite of Fear is Faith

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Image Credit by Ozra September 24, 2015 Bay Area CA_1.

Image Credit by Ozra

Is it? I think that’s a truth statement, mostly. Fear is defined as a distressing emotion aroused by impending danger, evil, pain, etc.,whether the threat is real or imagined; the feeling or condition of being afraid. One definition of Faith is defined as confidence or trust in a person or thing; belief in anything. Without having something to believe in, to add light to darkness, or hope in pain, change, love there really can’t be either. Yin and Yang. It takes one to have the other. It also takes commitment to oneself. Believing in ourselves when no one else does. Saving our own lives, if we must. 

“One betrayal costs a hundred devotions. One deception sacrifices ten loyalties. One misconception is the price paid toward assumptions and against each other”. ~Dyversiti

The struggle has been real and it’s been hard, but no one has really known that but me. I feel like the 5 years forward I’ve come (and the 10 years it took to get the there) has led 15 years backwards. I’m not physically or emotionally well and trying so very hard to not have a bitter heart.  ‘Forgive them Father, for they know not what they do”. I’ve always continued to love and care, and.. forgive even when the pain was on me because I was #StrongerThanPain and I was stronger because fear and faith ran simultaneously through me, always.

In Theology, Grace is defined as the freely given, unmerited favor and love of God; the influence or spirit of God operating in humans to regenerate or strengthen them. The Grace of God has been with me all the while. I’m already flawless in his eyes. Yet I fear… yes I fear, my journey has only just begun. Faith will evenly carry me through it. Hope is seemingly unconditional, but hope is conditional upon others, energy, an action.

BELIEVE

by Twinkle VanFleet

WITHOUT HOPE,

WE WOULD HAVE NOTHING TO PRAY FOR-

WITHOUT FAITH,

WE WOULD HAVE NOTHING TO BELIEVE IN,

WITHOUT LIFE AND DEATH,

WE WOULD HAVE NOTHING TO LOOK FORWARD TO-

WITHOUT GOD,

WE WOULD HAVE BEEN NOTHING AT ALL.

©1995-1999-2016 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved. (Written in the 80’s)

 

Dependent on medication management, I was. I still am, yet I’m not actually taking any pain relieving medication at all. It’s easier to send someone off to mental health than it is to understand that sometimes, usually, those meds give back life, instead of take it away. And in my case it did both.

Over

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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!

Courage - Your fear

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.

Over and…

out.

 

The Body, Mind and Spirit; Humanizing the Soul

https://rsdadvisory.com/2016/02/11/the-body-mind-and-spirit-humanizing-the-soul/

It Really Hurts to Hurt | Live On. Give On.

https://rsdadvisory.com/2016/03/20/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

http://www.californiaprogressreport.com/site/unintended-side-effects-fighting-prescription-drug-abuse

Bracelets; Lockdown; Profound and Letdown

https://rsdadvisory.com/2016/02/26/bracelets-lockdown-profound-and-letdown/

It Really Hurts to Hurt | Live On. Give On.

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twinklev_onlygodcanjudgemeIt’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.

Energy Pennies!

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.
PPP

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.

Accuracy matters.

and…

#IHaveTheNerveToBeHeard

Godspeed!

Death: Overdose or Suicide?

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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!