Live On. Give On | 2015 Bakken Invitation Honoree | Pre-Review

Week of January 11, 2016 (never shared)

As I get ready to fly to Kona, Hawaii for the Medtronic Bakken Awards, I’m trying to help myself overcome challenges related to traveling, weight bearing, pulmonary and sleep disorder issues. My breathing has been unstable this week, my head, neck, arms, and even female troubles have poked me in the side.

I had my appointment with my PMD yesterday to ask for considerations that might help me through as it’s becoming harder and harder to stay up on my own and maintain pain levels. I already put in for ADA assistance during the travel and at the hotel. Yet, I won’t allow myself to be confined to a wheelchair while there, so I’m carefully pacing myself so that my legs carry me. My Medtronic Spinal Cord Stimulator has been my pill for 10 years. I’ll be able to adjust for optimum relief, but to do so also means that I have to either not be on my legs/feet at that time or not raising my settings for added comfort. I learned a long time ago how to get the best out of it for me. I’ve also learned that there are times I have to trade relief for walking and I can’t always have both at the same time. I can set my stim to numb me, but because I am one of the lucky ones whose stimulation does reach the toes, increasing this setting can knock me off my legs. I reserve this for non weight bearing pain relief. This is not an adverse effect, but a plus and benefit that has to be noted and chosen to best fit my time and place.

My Auto Servo Ventilator is too big and quite heavy to carry, so I may have to go without it. Still working on that. Otherwise I’d be traveling with 2 medical devices and have little room for anything else.

At this time next week, we’ll have already landed and be apart of the meet and greet with each honoree, Medtronic and so many others. I’m looking forward to representing Power of Pain Foundation as the new International Pain Foundation, myself as honoree, each honoree for what they have also accomplished and given, advocacy, volunteering, my family, my closest friends, and Dr. Earl Bakken and Medtronic Philanthropy.

There are a few wonderful people and establishments I want to say thank you to for being apart of this with me.

The International Pain Foundation (IPF) #iPain – Previously known as the Power of Pain Foundation. http://powerofpain.org/

Sacramento Pain Clinic – Dr. Michael Levin – Since 2004. Not just a Pain Management Doctor, but a patient advocate going above and beyond his own job for his patients.)

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

Jacob Chopourian, Therapy Representative, Pain Therapist, Medtronic Inc Neuromodulation, Sacramento, California. www.medtronic.com

(Jacob has been part of my surgical team. He’s also adjusted me as needed. When I had my 9 year battery replaced I donated back to Medtronic my carrying bag, handheld stim (my stim) case, charger, hip straps, antenna, and manuals so that someone who needed these items in whole or in part could have them. Jacob came to my home to pick it up. Amazing man.)

Katie Tamez, Clinical Specialist, Pain Therapy, Medtronic Inc
Neuromodulation. Sacramento, California. www.medtronic.com

(Katie has worked to fine tune me, too.) I’ve no longer needed the 3 programs I started with many years ago, sitting, walking, sleeping. I use a single program with pulse. Wonderful lady.)

Compass Center for Functional Restoration – (Dr. Michael Levin MD)  Rick Wurster MSG, MPT, BCIAC  http://www.sacpainclinic.com/compass.php

(The center that taught me all there is about pain, physically, emotionally and psychologically. How to live with it using the mind, spirit and body to overcome flareups and maintain a modicum of sanity. Because of them I’ve been able to teach others what they taught me and find some joy and laughter in pain.)

Western Dental – Elk Grove Florin Road, Elk Grove, California

Dr. Tooloei, Staff.

You did great. Thank you for trying before I left for Hawaii. Trying meant enough to me.

Trudy Thomas, Featured BlogTalkRadio Host of the Living with HOPE Radio show on the Body, Mind and Spirit Network.

http://www.blogtalkradio.com/thebodymindandspiritnetwork
So proud of you and all you’ve given, selflessly. Happy that we have each other and our friendship survives the things we can’t do anymore.
Honored to have been both your co-host and guest speaker and warmed that you will always be family. Thank you for being all that I can count on as honorific leader/admin of my group. I love you!

Roy, MD Junction – http://www.MDJunction.com (Honored to have lead your Reflex Sympathetic Dystrophy Support Group for years.

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

Glad to have lead the ADHD support group on behalf of the children and parents who needed someone to oversee it. Pleased to still be a Senior Member and
MDJ Advocate. Love you all!)

Barby Ingle, www.BarbyIngle.com
(Together we can! Together we will! And together we are! Through MDJ and Trudy we found each other. I’ll forever remember the ones who cherished me for cherishing them. All 3 of you! Onward I go with #iPain. I love you!)

My Mom and Dad(s) (I know my dad is watching over. Gone since I was 22. My mom and dad was married 25 years when I closed his eyes. My mom and dad have been married 20 years and dated prior to that. So Mr. Don Tresca has been my father just as long as my birth dad was. I pray I’ve honored them all evenly and fairly as their daughter. I love you!)

Erik, Kharisma, Rikki, Kurtis and De’Mantai (my 5 lights). (Awards and recognition is great but not if they are seemingly meaningless to those that it should have mattered most, too.
There’s so much I’ve advocated for on your behalf’s that you’ve never even seen. I know that it all gets stale at some point but if you only knew it was never more for someone else than it was for you. Seek and you shall find.  love you! Ohana.)

I’m so glad Daddy saw, felt, and knows now. Sometimes it takes a miracle and that miracle came. It’s all good. Ask him ~winks

Annie-Marie Garcia (30 years! Time in between where we had gaps because life does that with work and loss. We don’t want to add burden to those we love or stomp on someone else’s, okay. That’s what we tell ourselves at least. I’m glad I got you now in the illness you should have never ended up with. I wish I was there when you were first going through it and if only I had known. Lets never let anything separate us again. For you and I, we have something special, we can see each other every day, or have weeks, months or years go by, but we always know that when it comes down to it, we are the ride or die. I love you!)

Maryann Kupidlowski Stafford (My sister since our babies were babies. Young teen daughters. If we weren’t there together we would have never met. Your curiosity, my extended learning, teaching. We both did, and we both gave, mine was just for extending natural order A decade? 12, 13. Time flies. Here we are moving forward in light, love and tomorrow. I love you!)

PK Saint-Amour (Bruja, pain, strength and the sight. Light and the “F’off. I so love you for being courageous in all of it. I’m so glad that you’re my sister in knowledge and fight. I love you!) https://www.facebook.com/groups/InvisibleWarriors/

Eileen McCready (A long time now too, background, foreground, compassion and understanding beyond pain. Sister of mine, always. I love you!)

Saskia Hubelmeijer (My international sister who does all she can in the Netherlands despite pain and hardship, and for America, too. Who’s assisted in leading my group since 2011, as formal admin and informal I love you!)

Billy Rose (Thank you brother for leading light and love above pain and hurt for all people. You demonstrate what the world needs more of and you are providing the change needed to overcome it all again) I love you!

The Council (We are who we are and one day when the earth is over, or death takes us, we’ll still be us, together, teaching, giving, inspiring, awakening those asleep all in their own time) I love you all. http://www.councilofenlightened.org/

The Sacramento News & Review (For featuring my voice and passion over 20 years ago) November 17, 1994, Speaking Out Edition) https://rsdadvisory.com/2015/07/24/sacramento-news-review-november-17-1994-speaking-out/

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

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

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

(In memory of IRJR http://www.irjr.com/, a great man, friend, Clamper, who many years ago when founded Widders Web honored me with his chat program instead of the one I was using for us, I used his to then honor what he started years previous to that. http://www.irjr.com/widderschat/  While the pages are currently not found and the chat needs updating, I wanted to thank him again. Mr. IRJR is no longer with us.

SPPAN (State Pain Policy Advocacy Network) (I hope we continue on)

RSD(S)-CRPS Advisories

(Founded by me, for you)

—————

Refer to December 27, 2015

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

To be continued!…

The best is yet to come.

Dr.Bakken and Twinkle VanFleet2

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

 

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

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

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

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

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

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

 

 

 

Christmas 2015

Hanging on the wall in the VanFleet home.

Hanging on the wall in the VanFleet home.

Originally we were going to go over to our son and daughter’s Christmas morning. Instead we went over on Christmas eve. Our son had to work until 2:oo a.m. Father and daughter watched the football game. They can get loud and crazy. I’m not a football girl, so at first I was listening to Spotify tunes and then I hung out with our grandson watching funny Vine video’s. We were all in bed fairly early. My husband and I were the first up Christmas morning. We woke about 8:50 a.m and got up about 9:00 a.m. Everyone else was sleeping. My husband said heck no! it’s Christmas morning they never let us sleep in on Christmas, so he went and woke ‘Tai up and I woke Kharisma. Ozra didn’t get in from work until 3:00 a.m and while I did go wake him, gave him a bit longer. Coffee was already on when I woke our daughter.

We didn’t do Christmas dinner, times are just hard that way and we all did a nice Thanksgiving dinner at our daughter and son in laws. Since our daughter Rikki and Dan were going to his family, we decided to just do Christmas breakfast/brunch and that’s what we did. Our oldest Kharisma, our grandson De’Mantai (‘Tai), our son who had to work that day too, and my husband and I.  All was as perfect as it could be! We’ve made alterations like this before when one or more of us had to work and we couldn’t be together. I’ve even changed the day or time so that we all could be.

Our 9 year old grandson was lit up by the hand made blanket he was gifted from our friend Debbie and the toys and Disney lithographs he received for his advocacy from the Power of Pain Foundation.

We managed to get a few photos before our son left for his second job providing security for the State of California. His first job is an 8 to 5 Monday through Friday. My dad is a retired officer, my son’s God dad is an active officer, and my son is training to be. Recently promoted to Sergeant in the Sheriffs Explorer’s program to lead others as he was the last 4+ years. Former National Youth Ambassador for the Power of Pain Foundation and Executive Board Member that’s where our grandson will be one day.

Father, Son, Mama Xmas 2015

Our daughter returned to work a month or more ago after a 3 month leave for medical reasons. She finally had her MRI at Stanford we hit a snag on. Hoping for answers on tumor growth, intervention, and treatment plan soon. It’s all so ongoing.

In her world anything is possible. Nothing can hold HER back. Her power and ambition are her strength. It is always about HER. Welcome to Her world. Thank you. (For Kay from Ozra)

In her world anything is possible. Nothing can hold HER back. Her power and ambition are her strength. It is always about HER. Welcome to Her world. Thank you. (For Kay from Ozra)

Brother and sister. Ozra and Kharisma.

Brother and sister. Ozra and Kharisma.

 

Father and son spent the morning putting together the 3 way game table that Kurtis Ozra (Ozie) gifted his house. ‘Tai was so excited.

Father and son. (Kurtis Ozra and Erik Kurtis)

Father and son. (Kurtis Ozra and Erik Kurtis)

 

Son and Mother ('Tai and Kay/Kharisma)

Son and Mother (‘Tai and Kay/Kharisma)

‘Tai had to play his mom a few games.

 

And before his Uncle headed out the door for work, nephew wanted some candy…

Nephew and Uncle ('Tai and Ozra)

Nephew and Uncle (‘Tai and Ozra)

 

 

 

 

 

 

 

 

 

Wish we had Rikki with us but we can’t be children hogs. We do have to share. 🙂

I raised some amazing kids, all 3 of them. Daughter Kharisma is a manager, daughter Rikki is an Assistant Funeral Director and son Ozra is everything he can be at 18. I did good! We did good Erik VanFleet! 2016 is 30 years strong. De’Mantai Xayvier is already on his way as a Gifted and Talented Education student. Several honor roll achievements to his name.

Honored to be honored for just being mama. (son and mother, Ozra and Twinkle)

Honored to be honored for just being mama. (son and mother, Ozra and Twinkle)

 

 

Yeah, we all did good!

It was a Merry Christmas!

Ohana.

 

 

 

 

 

 

I hope your Christmas was blessed, too.

 

Just One More Step

By Twinkle VanFleet

Twinkle V and Baby Ozra 1997

My baby son and I- West Sacramento- Spring, 1997

I fight, you fight,
We fight together.
You fight, I fight,
We win forever.

“Just one more step, Mama!
Just one more step”
The little voice echoed,
Made it over the doorstep.

Let go, let go!
Neighbors gathered around,
She spread her wings,
The sticks hit the ground.

The little boy beamed,
In the crowd of praise.
Flying solo,
Because of him, she prayed.

I fight, you fight..
For that one more step!
You fought, I fought!
Haven’t stopped yet.

(Hook)
Step up, step down,
Step in, step out,
Step to, step from,
Just one more step Mama!
Just one more step!
Step it up, Step!
Just one more step Mama
Just one more step.

Just one

one

one

Just one more

(Chorus)
I fight, you fight
We fight together
You fight, I fight
We win forever

(Fight! we fightin’ it)

(Fight it)

(Just one more)

(All it takes)

(Just that one)

I fight, you fight..
For that one more step,
You fought, I fought
Haven’t stopped yet.

(Still fighting)

(Steppin’)

(You Steppin’)

(Just one more step, mine)

We haven’t stopped yet

Twinkle VanFleet and son Ozra #NERVEmber 14, 2014

#NERVEmber 14, 2014 Power of Pain Foundation National P.A.I.N Summit

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

“I fight, you fight, we fight together” ©Kurtis V.

This quote has been on the internet for over a decade. It originated from my 3 year old son. I carried those words online. They came from the mouth of a babe for his mama (me). On the internet it’s ©Kurtis V. Kurtis V is Kurtis VanFleet a.k.a Kurtis Ozie, Ozie and Ozra.

Overcoming Challenging Obstacles

Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet below.

The past few years have been a test of strength, endurance, and possibilities amidst constant setbacks to overcome. 5 years after the injury that led to my CRPS, I did go back to school for a degree in Corporate Publishing. At the end of 2006 I took leave to have my permanent Spinal Cord Stimulator implanted and I returned approximately 10 weeks later. Due to not being able to drive any longer, my husband took me and picked me up in between his own full-time work schedule. By 2007, I wasn’t able to keep up any longer. My grandson was born in 2006, too. My husbands first heart attack when he was 37, 2 stent placements, his Diabetes diagnosis, he only used accumulated vacation time for it and returned to work in a weeks time. In 2007, we bought or first home, but he also lost his 13 year career and stability when his company C.S.A.A. (AAA) relocated out of California. I continued to raise awareness for chronic pain, met Trudy Thomas, became a leader at MD Junction’s RSD Support and remained for 3 years. My own support group which I began on My Space in 2003 was moved to Facebook, yet I didn’t move the members with it. I like for people to find us rather than to send out invites or notify. I met Barby through Trudy. My son had a traumatic brain injury in August of 2011 and my husband had a second heart attack within a year. I stayed in the PICU with Ozra for 10 days. In December of 2012 I stayed at the hospital with my husband for the entire 9 days during his quadruple bypass surgery, the first few days I slept in the van. In 2012, I had Gall bladder surgery and in 2013 I had another Gall bladder surgery which included the removal of part of my liver and multiple hemangioma’s. https://rsdadvisory.com/2013/07/17/gall-bladder-fiasco-continued-and-hopefully-the-final-chapter/

2014 my daughters liver disease, our sons birth defect diagnosis from Shriners Children’s Hospital unrelated to his TBI and my surgery to have my SCS battery replaced. Piece of cake, mostly. 2015 started with a bang and 3 weeks of hard Cymbalta, Zonegran, and Clonazapam withdrawal due to WC delaying Rx refills. The other 2 weren’t filled either, but really no effects from them as much as the other 3. I no longer take Clonazapam or get the Lidoderm. It hasn’t been easy, especially when Clonazapam did help and pain management medication was and is already at the lowest minimum. I already do all that I can to minimize my own agony and I practice these coping strategies each and every day. My husband just had surgery to repair a torn shoulder a few months ago and we just learned by MRI he has another tear in his knee. We’re still learning all we can at Stanford for our daughter. Rikki is managing well. My purpose is in helping others, it’s all I’ve ever done one way or another, but it isn’t my passion. I’ve come to realize it can’t be. It’s not the fire flickering about the dancing flames that motivates my spirit to fly. My bucket-list goal survives all this. It’s not writing, I have that. It’s not policy, POP gave me that opportunity again. It’s much deeper than that, at least for me. Our son and oldest daughter are moving in together on the 1st. My man and I will have our home to ourselves. January 26th begins my 16th year. I’m not sure where 2016 will take us, I just know I take a lickin’ and keep on tickin’ … for mine.


Overcoming Challenging Obstacles

“Pain isn’t in our head, but it is in our brain, and our minds. Pain is sent from the spinal cord, sending messages to our brain, back to our spinal cord and up and down those nerve pathways. Pain signals reach our endorphins, limbic system, https://www.dartmouth.edu/~rswenson/NeuroSci/chapter_9.html hypothalamus, where they then affect our emotions and other bodily functions. http://www.medicinenet.com/script/main/art.asp?articlekey=10812

Functional restoration afforded me lessons and insight to be able to push on. Sometimes we already realize these lessons for someone else, but when it’s us, we don’t recognize it the same, we change, unless we change us back.

It’s a daily process to overcome additional challenges brought on by chronic or intractable pain. It’s moment by moment at times. Having to stop something suddenly to practice breathing exercises to decrease a stress situation brought on by either emotion or a spike in pain, bring a rise in blood pressure down, use focal points, imagery or going to my “happy place” in my mind to ease myself.

“I will walk, when I cannot walk I will carry myself, when I cannot carry myself, I will fly” ©2009-2015 Twinkle VanFleet/@rsdcrpsfire Written while attending Compass Center for Functional Restoration

John C. Thomas, PhD, Rick Wurster MSG, MPT, ABP, BCIAC, Leticia Camarena M. A., Tatyana Yatsenko, Larry Lane, Patient, Patient, Twinkle VanFleet, Patient. Compass Center for Functional Restoration Graduation July 17, 2009

I began recording both my P & E. I tracked my “pain” level and my “emotional” level using the same Numeric Rating Scale. The 11 point 0 – 10 scale where 0 represents “no pain” and 10 represents “worse pain imaginable”, “as bad as I can imagine” or unimaginable. I don’t do this anymore because I’ve learned to have the awareness without tracking, but for example at the moment I logged, my E/emotions/stress was an 8 and my P/pain/physical was a 5, I would eventually learn that my pain level would most likely rise anytime. I had to use my cognitive tools right away to reduce my stressors in order to manage the physical pain. I discussed this concept at MDJunction.com when I was a group leader in the RSD Support Forum in 2009.

Life itself can be hard, add pain to it, and it’s even harder. It can be managed with the right tools. It’s never going to be perfect, but we can make it as comfortable or as tolerable as possible for ourselves. Removing or decreasing triggers that instigate pain have eased me. I can’t watch the internet all day. It’s not because I don’t love or care for everyone. It’s because there are pain triggers everywhere. When we see images, graphics, memes of illness or disease scrolling by, especially our own, a trigger can occur. I’ve learned over the years to recognize this. I have the awareness to understand that I can be a contributing factor in my own discomfort.

I never went to preschool and Kindergarten was only for a week or two. I started school in the first grade. I was taught at home and I was reading at advanced levels by the age of 5. My comprehension and spelling ability was always above average. While I either suppressed it or just didn’t care to acknowledge it, I did go to special classes in the first and second grade because I couldn’t pronounce the letter’s S and T in words and sentences properly. I was a critical thinker immediately in life. http://www.criticalthinking.org/pages/defining-critical-thinking/766

By the time I got to my 4th elementary school in the middle of the school year in the second grade, I didn’t have to tell anyone I went to the classes with the special ones. Those new kids and that neighborhood became the ones I grew up with until I left Sacramento in October of the 9th grade to move to L.A. County for my dad’s job. The rest of that year carried with it a bit of insecurity. I started Drama at my new high school and as a Junior I was in second year advanced drama, speech, debate and thespian clubs, involved in school plays, in chamber singers for a while, I swirled the baton too, but chose my priorities and kept to the one’s I still use today. By the middle of the 11th grade I was off to the high desert where my parents bought a home. I’ve been in 4 high schools, 2 Junior high’s due to the district split and several elementary. I learned to adapt young. I may not like it, but I do it fairly well. I’m a survivor of repeated childhood molestation and indirect physical and emotional abuse.

I’ve been an Empath http://themindunleashed.org/2013/10/30-traits-of-empath.html for as long as I can remember. I can vividly still remember leaving my teething ring on the back metal bumper edge of my dad’s best friend’s pickup truck and them driving away with it. I’m hypersensitive to people, places and things sometimes to my own detriment, yet I’m also a no-nonsense girl. I’m inclined to the natural order of things, including man and woman, but I’m not a doormat. I love my crazy and he does, too! Why? Because it’s really not all that crazy, I just like to have it appear so in the midst all the uncertainty in life. Laughing is the best medicine of all. If I can make you laugh, give you something to laugh at even if it’s at my own expense, I’m thrilled to have been of service.”

Empathy Vs Sympathy

http://www.diffen.com/difference/Empathy_vs_Sympathy

Sure there are times I think “Dang, no one gets it!” I don’t mean in everyday situations, I mean in my critical thinking. Those who are on the same page fear agreeing openly until my thought, reasoning, even an educated statement that I make is validated by someone with high education, authority or status. By that time I really don’t need the care, concern or acknowledgment. I might have needed it when I was no one to be acknowledged for. No one will ever know in these situations because I’ll not ever treat them any different and there isn’t any animosity, but there is recall. Why? Because everything we do or don’t do to another person makes an impact on them. Those impacts influence the rest of their lives by accumulation in decisions and choices. This includes my interaction with other people.

By the time I was in the 4th grade I was in the MGM program. At that time called Mentally Gifted Minds. My 9-year-old grandson is currently in the Gifted and Talented Education Program (G.A.T.E.).

During the 4th to 6th grade 2 of my class periods were reserved for tutoring the NES (Non English Speaking) students who just joined our Country from Vietnam, and other Southeast Asian communities. I was 8 years old when I began the 4th grade. These years were 1975-1977/78. Due to being bright enough to be a student teacher at such a young age, I missed normal class subject time; I began to fall behind in math studies. My mathematical education is only that of general knowledge. I held enough that I was promoted to General Manager for a Restaurant by the time I was 24.

I started college when I was 15 in the high desert of California. Law and Acting. I studied both Fundamentals of Crime and Delinquency and Theory and Practice of Acting. I loved being a minor, non-adult, in an adult law class. I loved that my mind was evolving, but it was at a pace others couldn’t keep up with. I loved learning by law enforcement mentors and the few things I participated in to grow and develop lifetime strategies for. I’ve been fond of the Law, Sociology, Philosophy, Theology, Theosophy, The Human Mind, Psychology, Enlightenment, Consciousness. Alternative Lifestyles, Natural Order and the last decade or so Pain Psychology. I like various other topics relating to each of these, too. When I indulge in a book these are the things I enlighten myself in.”  Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet (Currently unpublished in its entirety) ©2015 Twinkle VanFleet, Overcoming Challenging Obstacles. All rights reserved.

(Several paragraphs have been removed from the original for this share)


 

It really is a multi-disciplinary approach to pain care and taking an active role in our own overall well-being that makes the difference between making it or breaking it. Even if we have to fake it to make it to get there.

~Twinkle

A Bit of Hope

A Bit of Hope

By Twinkle VanFleet

shutterstock_129078545 - GodsHand

A hand reached out from heaven,

And lifted her toward the sky,

She saw a glimpse of heaven,

Through the twinkle in his eyes.

I give to you the world,

There you will change many lives,

Because of you, they will love me,

They will see me… the spirit,

Through your eyes.

 

I gave to you hope,

You will always hope for them,

I gave to you a voice,

Use it now and again.

I gave you a golden heart,

So it may always be true,

I gave to you the personality,

I made not another soul like you.

You will always shine,

Like stars of the night-light,

You are a special one,

From the dust,

I made you right.

 

Your words will teach them,

Only a few and I will understand,

His heart will love you,

He receives from me your hand.

Teach them the truth,

You will know what it means,

You will be the many winds,

Beneath his wings.

 

He will cherish you, but

Your own heart will cherish him more,

Together, you must share with the world,

My hopes and dreams

Hope is what I made you for.

©1995-1999-2015 Twinkle wood-VanFleet/Golden Rainbow Poetry/All Rights Reserved. First publication: by Golden Rainbow Poetry licensed as a small business in the City of West Sacramento, CA. 1995. OL- 2007. Written 30+ years ago. Slightly altered from original.

Family, Indie, Pain

Squirrel! But it really was. I’ve been staring out the window watching it for 30 minutes now. Running along the back fence, through the branches of the large tree that’s limbs cover the roof above my bedroom. It’s green, brown and yellow-gold leaves scattered about the ever-changing arms of fall. I gazed over as the quick little animal hurried over the Tuff Shed, back along the other side of the fence and eventually disappeared again. And then I was reminded of all the distractions.

The day before we left for the Stanford transplant center on behalf of our daughter for the second time in a month, my 6 month old puppy Independence stopped eating, drinking, became lethargic, ceased playing. No more kisses, no more loves, no greets. He’s always extremely perky, playful and active. He loves his ropes, always tugging with me, but not anymore. This was on Wednesday, the 14th that this began. We’ve already spent $2,000 saving one puppy many years ago from Parvo, nearly lost another that I was able to save by IV home care I’m not sure what’s the matter with Indie. I know, take him to the vet, but unfortunately it’s not an option. If you’ve been following any of my story relating to our daughter, no matter how much I want to and wish that I could I’m just not able.

Independence (Indie) October 6, 2015

Independence (Indie)
October 6, 2015
Before he became sick.

I started force feeding him sugar-water on the 14th. Other than in the A.M. I was gone all day on the 15th and didn’t get home until nearly midnight from Palo Alto, CA. Our daughter seen her specialist and had a pre scheduled MRI immediately after. Her doctor added a brain scan as well. We drove another 20 minutes to the imaging center and learned that the scans hadn’t been authorized by the insurance. I could understand the second not being yet as it was just added, but the first hadn’t been either and had been scheduled 3 weeks prior. We signed the papers to take financial responsibility still hoping that the insurance would be approved or that we could appeal if all together denied. She has to have these scans. She was taken back and came out 15-20 minutes later in her gown into the lobby. They wouldn’t proceed without a $10,000 down payment. Oh my! Then we learned none of her Stanford appointments have been covered. Nothing we could do. She went to change and we drove back home to Sacramento.

When we got home Indie short for Independence was in the same condition as when I left. I gave him more sugar water. He wouldn’t even look at food or water. His head was droopingI rested a bit, I was exhausted, I hadn’t been feeling well, I’ve been in a flare, but my arms were hurting too much, numb, losing feeling, difficult to raise, electric shocks, my chest aching. I started researching all that I could on sick puppies. I gave him a dose of RFD Liquid Wormer for puppies and dogs and comforted him. I already had it on hand. I finally fell asleep about 4:00 a.m.

When I woke, I could barely lift my head, I couldn’t feel my arms, I could barely carry myself my back was so heavy, hate is a strong word, but I really hate the word pain, it really hurt, my collarbone area, the side of my face, my lips were having spasms and sharp spikes. All in addition to my lower back and bilateral CRPS. I was diagnosed with Fibromyalgia in 2003 also, but I know that pain enough to differentiate it from CRPS and what’s going on here. For me, Fibro feels like I’ve been run over by a truck. Really deep muscle pain. Or if I haven’t worked out in a long time, and did for a day, it’s similar to the next days muscle burn pain we get from it. My arms first started doing this a couple of years ago, lasting for over 6 months straight at one point, all day and night long in the seize and release. The only way I’ve been able to describe it is that it feels like my spinal cord stimulator is in my arms for seconds at a time. Being turned on, increasing in intensity until it reaches its peak, locks my arm up, in whatever position my arms are at the time it occurs, until the buzzing/intense tingling/shocking eases down and releases. I suppose if I didn’t have an SCS, I couldn’t describe it this way and maybe because I do I had been accidentally misleading doctors in my description. The only way to describe accurately is to truthfully describe as something feels. It’s really painful. Bringing me to tears more than a few times. I really hold back crying over my CRPS pain, I hide pain fairly well, including pain behaviors and guarding, but this has caused tear drops to rain on their own accord. Automatic. It feels like a line running through the side of my head and continuing down my neck into my arms. Worse on the right,  though both are effected. And the headaches, disorientation. Phew! By the way it’s not possible for the actual stimulation from my SCS to be in my arms. Plus, back when it first occurred, I inquired to the possibility just to be sure.

Barely being able to make it down the hall because evening out my spine wasn’t an easy task, I got my coffee, and tended back to Indie. I’ve found him in the backyard twice and that scares me. I know animals often go away to pass on. He’s not an outside dog like that and because it’s not part of his normal routine it makes me uncomfortable.

I got everything ready I asked my husband to get from the store the night before. I’m bound and determined to make him better. Today is the 5th day since he’s not eaten. My husband brought back Pediatric Electrolyte, Karo Syrup, and 4 containers of chicken and rice baby food. All day long, I’m giving him a 3 ml syringe of the PediaE, 3 x each time, every hour at least. I have to pry his jaws, or attempt into the back side of his cheek between his teeth. He’s that sick. I rub the Karo on his gums to raise his blood sugar. I used a spoon to force feed him the baby food. It was messy. On the 3rd day, he finally drank water from his own bowl, but he vomited it up on my bed. Laundry! He did drink too much for not having drank in 3 days, I think. I’ve been watching for blood, there hasn’t been any that I know of. He didn’t drink any water again yesterday and he still hasn’t eaten any food and is still inactive. My 9-year-old grandson just said to me as he pet to soothe the puppy laying beside me “I miss when Indie was all hyper”.

Last evening, I added Tylenol into his daily care. I didn’t have baby Tylenol, so I put one of my Acetaminophen into a water bottle cap with a few drops of water to let dissolve. The Tylenol is a OTC 500 mg. Once liquid, I pulled approximately 150 mg of it into the syringe with the rest PediaE, shook it up, opened his mouth, and shot it down his throat and gave him 2 more 3 ml PE.

He’s so skinny.

It’s hard when you have to make choices, or rather, you don’t have any, but there are options and I’ve used my knowledge, past experiences, and the research to do as much as I can for him, as I do for the rest of my family. I hope I’m not prolonging his survival to cause him suffering but instead saving his life with all the love and compassion within me. I really don’t give up, not even on a pet.

Today I started using the syringe to get the baby food down him. Too many days have gone by. I pray I’m doing something right, he’s still hanging on.

Friday night I was diagnosed with Cervical Radiculopathy, previously diagnosed as only Paraesthesia. As long as I’m not going to drop dead of a stroke, I can figure out a way. And nope, wheels (wheelchair) are still not an option at this time. I’ve already beat being in one permanently by 10 years due to my lower extremities, not letting my upper body steal the good hard fight. Nope, not yet.

It’s taken me 2 hours to type this. A bit of a setback.

… But only a setback.

#StrongerThanPain