Echoes

Echoes
by Twinkle VanFleet

She doesn’t mind taking the fall for you,
Just let her know what she’s taking it for,
So that when she’s confronted,
The blanket protects you more.

 

She doesn’t mind catching the shame,
To save your lovely face,
Just don’t let it come to her from the flip side,
Where she has no saving grace.

 

All it takes is one betrayal, my friends,
To remind us why we guard our heart
One deception, cost 10 loyalties
Be mindful in the choices that alter the dynamic art.

 

Be conscious that when it changes,
It’s never the same again,
Be cautious of the slips,
That penetrate like acid rain.

 

But know through each forgiveness,
Comes a new sense of owing,
Everything has a season,
Human nature keeps growing.

 

She knew from the beginning,
It would be part of the path,
To become wedged in circumstance,
And reap another’s wrath.

 

She knows there’s a bigger plan,
That sometimes ends in backfire,
Dangling between wonder and misconception,
So that you might acquire.

 

As we each make it through the storms of battle
She hopes there’s still some splendor,
In the fire once glowing splendiferously,
Which dimmed to a smoldering ember.

©2015 Twinkle Wood-VanFleet  All Rights Reserved.
Copyright Laws and Regulations of the United States  http://www.copyright.gov/title17/

 

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Mom

MyMom and I_my25th_1

Mom
By Twinkle VanFleet

You Were The Arms That Held Me,
When Dreaming Kept Me Awake-

You Were The One Who Stood Beside Me,
When Growing Up Was Hard To Take.

You Were The One Who Encouraged Me,
To Be All I Could Be-

Sometimes, I Gave Up,
But Still, You Were There For Me.

And When You Thought You Had Failed,
I Was By Your Side-

Knowing There Are Many Choices,
You Chose One And Tried.

Thanks For Being My Friend,
You Are What All Moms Should Be-

I Love You, Mom,

Because Through It All-
You Were Loving Me.

©1995-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.

Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Written in my teens. First published online in 1995.

Mom was available in the Spring 1998 edition Of “Poetic Voices Of America” by the then Sparrowgrass Poetry Forum.

ISBN:0923242570

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I wish I…

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I wish I…
by Twinkle VanFleet

I wish I may, I wish I might, give my life for my baby tonight,
I wish I could, I wish I had, the extra strength, for another new fight.

I wish I did, I wish I didn’t, know what’s to come, end or begin,
I wish I won’t, I wish I will, learn and grow, through this again.

I wish I knew, I wish I didn’t, all that it takes, to keep going with it,
I wish I felt, I wish I wouldn’t, not my daughter, let me take this.

I wish I had it, I wish she didn’t, so she could thrive, without fears,
I wish we do, I wish we will, have much more, many new years

I wish I can, and I will, carry my baby through her hardest nights,
I wish I may, I wish I might, give my life for my little girl tonight.

©2015 Twinkle VanFleet All Rights Reserved.
Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Kharisma, Erik and I_2013

2 year ago

Dad, daughter,

My daughter and I (daughter, right)

Me, husband, daughter.

#StrongerThanPain

 

To be continued…

 

On This Day

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On This Day

Dedicated To The Marriage Of Don Marino And Melody Anne
April 18th 1998
Mr. and Mrs. Don Tresca

TODAY, YOU HAVE TAKEN HER,

TO BE YOUR LIFETIME WEDDED WIFE-

TO LOVE, HONOR AND CHERISH HER,

EVEN AFTER SOMEDAY TAKES HER LIFE.

TODAY, YOU HAVE PROMISED TO LOVE HIM,

UNTIL DEATH DO YOU PART-

AND TO LOVE HIM MORE TOMORROW,

AS THIS DAY- WITH ALL OF YOUR HEART.

TODAY- YOU HAVE JOINED TOGETHER,

FOR INFINITY MIGHT BE RIGHT NOW-

TODAY, TOMORROW AND FOREVER,

YOU HAVE TAKEN GOD’S SACRED VOW.

A NEW BEGINNING HAS STARTED TODAY,

BY MARRIAGE YOU ARE ONE-

MAY YOUR LOVE BE UNCONDITIONAL,

AND NEVER COME UNDONE.

©1998-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.
For viewing purposes only. May not be copied, reproduced or altered in any way.

Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

HappyAnniversary

Odessa Virginia

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ODESSA VIRGINIA
by Twinkle VanFleet

 

I NEVER CALLED HER MISSES- I NEVER CALLED HER MOM-

BUT A MOTHER SHE WAS- BORN ODESSA VIRGINIA RAAEN.

DURING WORLD WAR TWO- SHE BUILT B TWENTY NINES,

HELPING US WIN THE FIGHT-

A GRAY LADY SHE WAS, FOR HER GENERATIONS PLIGHT.

SHE FELL IN LOVE AND MARRIED A MILITARY MAN

TOGETHER THEY HAD 4 CHILDREN- AFTER THEY FIRST BEGAN.

JAMES, CRYSTAL, TANYA AND ERIK-

AFTER 32 YEARS IT WAS OVER,

SOME SAY SHE JUST COULDN”T BARE IT

.

SHE NEVER RE-MARRIED, SHE TOOK GOOD CARE OF HERSELF-

DEPENDENT ON NO ONE, SHE KEPT TO GOOD HEALTH.

SHE HAD A POWER OF KNOWLEDGE, A SECRET TO MOST-

AND A WISH TO LEAVE THE CITY- HER DREAM WAS THE COAST.

LEAVING BEHIND THE PAST- AND THE FUTURE SHE KNEW-

TO BE FREE OF THE PAIN, SHE COULDNT UN-DO.

I’LL NEVER LOVE ANOTHER QUITE LIKE SHE-

HER INSIGHT GAVE ME THE WISDOM-

FOR WHAT TODAY, TOMORROW AND FOREVER MIGHT BE.

DESTINY WAS TO KNOW HER- GOD GAVE ME TO HER YOUNGEST SON-

THE LAST ONE TO SEE HER- HER DYING WAS YET TO COME.

ALONE SHE CLIMBED THE STAIRWAY TO HEAVEN-

FOR THE COAST AWAITED IN HER SLEEP,

BLESSED IS THE WOMAN SHE WAS- ODESSA VIRGINIA VANFLEET.

 

©1993-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.
Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Understanding Diverticulosis

ColonwithDiverticulosisdoc163913On April 1st I had another procedure to assist in finding out why the symptoms in my belly have worsened over the last year. It wasn’t a routine procedure. Prior to 2013, I was having upper stomach pain that came and went. Held at a 3/4 on average and would rise to a painful 8/9 until I ended up in the Emergency Department at a hard 10 and was admitted for emergency surgery to remove my grossly diseased Gall Bladder. So that I don’t go back into all that, those posts can be found here and ending here for the most part. My stomach never did get better. I was diagnosed with Gastritis during the ERCP in 2013 after my first Gall Bladder surgery, so I knew I had the issue of inflammation around the stomach lining. Reducing fat intake didn’t seem to make a difference, but I’ve kept to low to no fat on a regular basis. My kidney’s are no longer in the greatest shape, but they are functioning. The issues that took me back to the same Gastroenterologist was bleeding, pain, and months of diarrhea, after years of constipation. My tailbone has been clicking in and out-of-place for over a year more and more frequently. Worse when getting up from a sitting position or when on the toilet. I thought it might be due to the Osteoarthritis of the Lumbar Spine diagnosis I’ve had.

I knew I could also feel something inside me when going to the bathroom. As it turns out there was and it was removed during the Colonoscopy. I was diagnosed with Diverticulosis in the recto-sigmoid colon and in the sigmoid colon with colonic spasm. The 3 mm polyp in the sigmoid colon was resected and retrieved.  Internal hemorrhoids were found as well, I think many of us have those, either internal or external. Either from constipation, strain or from having babies.  I haven’t received the biopsy results yet. I am not worried about that, I’m just glad to have the annoyance out of me. Severe diarrhea has complicated things to the point my legs have a hard time carrying me to the bathroom several times a day and during the night. It’s unfortunate that sometimes there hasn’t been time to get there and I’m closest to the bathroom I can be. That symptom still nags me. I’ve been relying on my Spinal Cord Stimulator even more using it to mask the discomfort around my mid section as well as my legs. Newer reports suggest fiber isn’t as beneficial as previously thought but that mesalamine might be. This September 2014 Mesalamine for Recurrent Diverticulitis Prevention: Results from Phase 3 Controlled Trials report doesn’t seem promising. Everything else is invasive at the critical point. I gained a horrible amount of weight the last 2 years with little to no change in activity or eating habits. Swelling in my face is often, gray color to my facial appearance, a look of black eyes. My stomach extends to the point of looking like there’s a hill-top on one side or so swollen I’m harvesting a human in there. It makes sense now why the area where my Gall Bladder use to be has never stopped hurting. I’ve learned to deal with it and gastritis, the only time it knocks me down some is during a flare up. What I couldn’t fully grasp was all the extra that sprung up along with it.

Sigmoid Diverticulitis- A Systematic Review

Diverticular Disease of the Colon

The Colon

AnatomyColon

Over 14 years of CRPS type 2 from a mid-metatarsal separation. I’ve had several lesions removed from my liver, my kidney’s have declined, my uterus lining is inflamed, diagnosed by ultrasound and surgery, with a suggestion to have a hysterectomy. Stomach lining inflammation, and now colon inflammation confirmed. I’ve had an infection for over 2 years. My white blood cell count has been elevated above normal range. I’ve been treated for high blood pressure for a few years now with Lisinopril and recently put on Hydralazine for when it gets above 180/. Maybe a course of antibiotics will help my belly. I still have to followup. I was given 12 photos of my insides after procedure.  I’ve been extremely Vitamin D deficient for years now with only 1 testing where I made it into the normal range. My blood is monitored every 4 months.

I have another report that will be ready on the 15th of the month. This one may have CRPS documented as part of the cause.  It was at the feedback session. I underwent those tests awhile ago. Still have a few things to work on in regards to the sleep disorders, narcolepsy, brain, brain stem and other issues, but things are moving a long. I’ve been using an Auto Servo Ventilator for about 3 years for OSA, CSA with Cheyne Stokes. It hasn’t helped with the EDS, it has helped with breathing. It’s ability to record every breath I take, don’t take, deep breaths, short breaths and so much more is amazing.

I don’t contribute everything to CRPS, I know that it is part of what’s going on. If doctors aren’t going to consider them related and document it then how can I? I could never go to a new physician and say my insides are coming apart do to CRPS and them ask “who told you that?” and me say “I did”. I’d get laughed right out of the office or not taken seriously about what really might be true and most likely is. That’s why continued awareness, research, documentation, diagnosis’ and timelines are so important. There are many other’s who have developed similar health issues. If we help educate then eventually documentation will take place. We know there is literature to support internal organs being affected, but hardly any providers recognize it.

SigmoidDiverticulosisI’m not sure yet what the plan will be. I should know more this upcoming week. I need to verify too. My procedure photos I came home with are copies. In the copies it shows areas of white outs, white space and white dots, so on film that would look different. I need clarification.  I just keep bleeding. JP drain in 2013 for internal bleeding, a hemorrhage during wait period for second surgery months later and during the surgery and again more bleeding.  Hurt, hurt and hurt.

But what do we do..

.. We go on.

 

 

 

 

 

She Awaits Him

SHE AWAITS HIM

by Twinkle VanFleet

Heaven

AND HERE HER GROUND HAS COME TO OPEN,

LIKE ARMS SPREAD WIDE IN WELCOME-

PATIENTLY AWAITING HIS COMPANY ONCE SHARED,

SHE’S COME TO GUIDE HIM TO HEAVEN.

ONCE GATHERED ABOUT HER RESTING PLACE,

AND WISHING NEVERMORE-

NOW WE LAY HIM DOWN ATOP HER HEART.

WHERE NEW PAIN AND TEARDROPS POUR.

WHERE TIME HAS NAMED THEM RE-UNITED,

AND A CHILD’S HEART WILL WEEP IN SORROW-

WHERE ANOTHER DADDY IS LAID DOWN TO SLEEP,

AND HIS CHILDREN BEGIN TO FACE THEIR TOMORROW.

WHERE DAUGHTERS CRY AND SONS TOO WILL SHED HIS TEARS,

WHERE WE LAY DOWN OUR FATHERS-

AND LEARN TO COPE WITH OUR FEARS,

I STAND HERE BEFORE YOU- NOT A STRANGER TO THE LIGHT.

SEE YOU IN THE MORNING- SWEET DREAMS, GOODNIGHT.

©1998-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry

All Rights Reserved. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Overcoming the Stress Response

comtragcrpsa1The Sympathetic Nervous System is derived of 2 components. The Sympathetic Nervous System (SNS) and the Para-Sympathetic Nervous System (PSNS) both of which makes up the Autonomic Nervous System. The Sympathetic Nervous System is also known as Fight, Flight or Freeze. Stress and the Brain can be a serious issue for many individuals. Related or unrelated to various diagnosis’. Over the years I have lisened to thousands of individuals with a multitude of diagnoses.

Most of which touch on the the Stress Response. The stress response is “The Sympathetic Nervous System”. The Sympathetic Nervous System is the Stress Response. It is Fight, Flight or Freeze.

Having Complex Regional Pain Syndrome Type 2/Causalgia, I’ve had to take pause for an extra peek. Was there something there in my life at the time to cause my body to take this abnormal path. Has the stress and idea of not being able to heal kept me in this abnormal pattern. For me and only me, I cannot dismiss it. I cannot seem to find anything solid, but our minds don’t always work that way conclusively.

I refuse to give up, yet I fall to my own victimization in that I, at times, give up. It doesn’t matter if it is for 5 minutes or for a day. I have the awareness to know that by giving in, am I somehow reconditioning that stress response. I think it is possible. I use many of the alternative techniques available to me on a regular basis. That is how I survive. I also know that I succumb to fears of the future. Fear is anxiety. Anxiety is fear. Fear and anxiety is stress.  Add stress to chronic pain and you, or I, will always have a vicious cycle to endure.

Rarely do I focus on the physical decline of my being, I am aware. If I did, I would continue to re trigger the same event each and every day. I don’t focus on the look, or what I see. I do have trouble with the fact I can’t get out on my own. I have been trying to clear the secondary issue of depression. Many of us believe we are reasonably well. That is what we represent. My family fell to a hard decline a few years ago and since then it has been non stop. Surreal in some ways. A living dream. My personality type is to fix. My family is everything. My husband, children, and my grandchild.

If I can’t fix it, love it, make it right then it is wrong to me.

I have been taught not to show pain behaviors and not to guard. This is almost nature to me. For years now. Seldom if at all.

Perhaps there are times, yet they would be minimal.

I am on my way to getting better! You won’t be able to until you get rid of everything heavy you ever carried. Why? Because chronic pain has a way of bringing it all back. Heavier than it ever was. You will keep everything inside you. All thoughts, misconceptions, hurts, perceived hurts. You will! You have to let it go. And once you do, you will find peace not only in yourself, but in your pain.

~Twinkle VanFleet

Overview of the Autonomic Nervous System

http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/autonomic_nervous_system_disorders/overview_of_the_autonomic_nervous_system.html

The sympathetic division of the autonomic nervous system maintains internal organ homeostasis and initiates the stress response.

https://www.boundless.com/physiology/textbooks/boundless-anatomy-and-physiology-textbook/autonomic-nervous-system-ans-14/physiology-of-ans-142/sympathetic-responses-750-9204/

Fight, Flight or Freeze: The Stress Response

http://psychcentral.com/blog/archives/2014/07/31/fight-flight-or-freeze-the-stress-response/

What is the Stress Response?

What is the Stress Response

Stress Management

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Chronic Stress Puts Your Health At Risk

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Post Traumatic Stress Disorder (PTSD)

http://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/index.shtml

Systemic Complications of Complex Regional Pain Syndrome

Click to access Systemic-Complications-of-CRPS.pdf

Power of Pain Foundation- ADF and Access to Care

 

AZ State Capitol BuildingADF

Power of Pain Foundation recognizes that Abuse Deterrent Formulations are only a step forward
toward drug diversion. We know this isn’t the final answer. It allows an option for patients to
continue to be treated with opioid analgesics and removes many of the barriers involved in non abuse
deterrent medication.

 

POPF Pain Community Needs Assessment Survey

We are not focusing on any one treatment option, we are improving upon the patient/provider
relationship.

The purpose of our survey was to determine who is having trouble getting access to quality care.
who is being dismissed, who is being cared for by a primary physician, who is being sent to pain
management and who is having difficulty receiving ongoing pain care.

We are aware of many individuals who are not receiving proper medication management or treatment
and others who had been receiving care that are now facing obstacles.

Our goal is continued access to care. Our goal is patient empowerment.

Recent Articles

INEFFECTIVE TREATMENT ASSOCIATED WITH THE CHRONIFICATION OF PAIN by Barby Ingle
http://www.lynnwebstermd.com/ineffective-treatment-associated-with-the-chronification-of-pain/

BARBY INGLE ON CHRONIC PAIN AND OPIOIDS by Barby Ingle
http://www.lynnwebstermd.com/guest-post-barby-ingle-on-chronic-pain-and-opioids/

The Unintended Side Effects of Fighting Prescription Drug Abuse by Twinkle VanFleet
http://www.californiaprogressreport.com/site/unintended-side-effects-fighting-prescription-drug-abuseTwinkleV_SB1258

 

 

 

 

 

 

Barby Ingle: Tamper-proof pain drugs deserve support

http://www.desertsun.com/story/opinion/contributors/2015/02/28/ingle-pain-medication-%20tech/24144627/
With the Power of Pain Foundation as a sponsor of the new bill AB 623 on Abuse Deterrent
Formulations, the above article  Op-Ed by our President has special significance being published 2/28/2015.
#RareDiseaseDay http://www.rarediseaseday.org/

Our President also wrote articles for for WA, NV, AZ, and CA.
She wrote letters to legislators in MD, MO, UT, CO, AZ.
BarbyIngle-FillYourPrescriptionOfHope
We are committed to you!

 

Power of Pain Foundation Advocacy Committee
Twinkle VanFleet, Board Member, Advocacy Chariwoman

Love My Crazy

Love My Crazy

By Twinkle VanFleet

Love my crazy
Love my fire
Love my passion
I desire

Love my laughter
Love my pain
Love my compassion
By which I’ve gained

Love my present
Love my past
Love the future
At a glance

Love opening minds
Love removing blinds
Love makin’ points
With aching joints

Love spreading word
While still not cured
Love faking it
Toward making it

Love a little change
To rearrange
Love to share
And make aware

Love my path
And my faith
Love my heart
And his grace

Love my uncertainty
And my place
Love my light
And my space

Love my actions
By which I learn
Love my words
Palms upturned

Love my mind
And my emotion
Love my crazy
And my devotion.

©2015 Twinkle VanFleet  All Rights Reserved.

Copyright Laws and Regulations of the United States
http://www.copyright.gov/title17/

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