The Last 6 Weeks in Review

justlive

It’s been 6 weeks since I completed the Gohl Program. This post will share progress and setbacks since returning from the healing retreat. Hard times dictate choices. A week after returning I lost 3 puppies. 2 of them, I held until they took their last breaths. One of them I held all day. Both of them I gave my own breath to to try to save them. I lost them 12 hours a part, so those 3 days were intense. My son’s car was stolen out of his driveway with important gear in the trunk. It was located abandoned the next day but without the safe.

My mom and dads home burned down.

News 3 Exclusive

Vietnam veteran, wife and granddaughter lose Harris County home in fire
@Ashley_G_WRBL
Published: December 2, 2016, 6:40 pm Updated: December 5, 2016, 9:51 am

Don Tresca Vietnam Vet house Fire (Please share)

https://www.gofundme.com/dbxzr5rw?ssid=835607202&pos=2

My daughter’s liver is still unstable and with little to do for it. She’s been a patient at the Liver Transplant center at Stanford for awhile now and is being sent to their pain management for care.

My husband was cleared for knee surgery though we’re still waiting on scheduling.

In the midst of it all, I’m trying to maintain reductions in pain with physical movement, stretching, and all those things I need to do to recover and strengthen myself further.

Right now, I’m doggie sitting and have been since Monday. Aloha and Gaia came home. They’re Ohana’s brother and sister. They were born on Valentine’s Day, hours after I was admitted to the hospital. They were named from me having just returned from Hawaii a month before. Mahalo and Cupid are no longer with us. Aloha was renamed Legend by his new family and Gaia was renamed Bella. They’ve been together all along and came home as if they never left. They knew their birth place, they knew their den. They were both also reunited with their mother, Oreo. Aloha and Gaia sleep at my head, Ohana sleeps behind my knees, Lilly flower in the crook of my neck and Independence at my feet. Yep full twin bed. Freedom, Amo, and Oreo with my husband.

My CRPS legs and feet are still doing fairly well for what they had become all the years prior and for what they’re becoming. Pain in my arm is much better than before. There really isn’t anything wrong with my arm, directly, it’s referred pain and symptoms from my back, spine. Nerve roots and all that blah blah. I can feel the tug of the curves in my spine and it’s still sort of depressing because I don’t know how to reverse the errors in my own body anymore than I know how to correct the mistakes in healthcare that could have potentially eased it if it had been addressed. The only time my back effects my legs is when those bones shift.

I don’t think most will ever realize the difference in pain levels before and after MLT. That even with these issues the impact of learning what to do for ourselves and how we can decrease additional pain and symptoms simply by a therapy rather than by medication or injections.

After the California International Marathon I was down a few days but that was because I attempted a walk I hadn’t done in 16 years. These few days however wasn’t the week + that activity, events, walking, standing, movement or even stress would have previously caused.

It’s not easy my friends, but it’s getting easier. I don’t have pain medication to turn to for chronic or even an acute situation and I’ve flat out never cheated taking any even when they were in my reach. February will be a year without medication management for pain and related symptoms.

I use sublingual oil and gummies, medicinal, on occasion. I’ve also used Kratom, which has no more risk than opioids when used responsibly.

I still haven’t turned my SCS back on. Not because I didn’t need it a few times but because I’m struggling to not want to need anything. I’m still not using my ASV. I still have no plans on ever being put in a scoliosis brace and I’m still not considering corrective surgery for it.

Wanna live? Don’t rely on others to fulfill it for you.

“Do not ask the stones or the trees how to live, they can not tell you ; they do not have tongues; do not ask the wise man how to live for, if he knows , he will know he cannot tell you; if you would learn how to live , do not ask the question; its answer is not in the question but in the answer, which is not in words; do not ask how to live, but, instead, proceed to do so.”

Page 9  ~Magicians of Gor

Death: Overdose or Suicide?

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

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

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

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

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

I’ll leave this post short and simple.

Ponder that!

Ohana (For Dr. Earl Bakken)

by Twinkle VanFleet

Twinkle VanFleet 2015 Bakken Invitation Award Honoree_1

Front and back

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

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

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

for…

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

7, 8, 9
Losing time
Sharing
Your paradigm

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

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

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

Got you
Got us
Got me
superfluous

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

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

For Dr. Earl Bakken, Medtronic Philanthropy, #LiveOnGiveOn

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

Mahalo

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

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

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.

 

Thanksgiving – Being Thankful

Image Credit by Ozra

Image Credit by Ozra

I’m thankful that my mom was able to make it here from Georgia over the summer. I’m thankful for our time together. I miss her. I’m thankful for my husband, our 2 daughters, our son and our grandson. I’m thankful for the food we prepared and all ate together.

I’m thankful for family and friendships and the friendships that are family. I’m thankful for people who try when trying is hard enough to achieve. I’m thankful for the acquaintances. I’m thankful for all our differences because if we were all the same there would be nothing to learn from. I’m thankful for both joy and pain.

I’m thankful for the Council and the Enlightened because we understand the meaning of humanity beyond the scope of the physical world. I’m thankful for the experiences in all that they’ve been, and I’m thankful for the memories that accumulate in time.

I’m thankful for today, tomorrow and yesterday,

Because it’s all right now.

Forever.

 

I’m thankful for the love…

… And the light.

Twinkle VanFleet Thanksgiving 2015 3

I’m Thankful, Thanksgiving 2015

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

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

Utopia- Sir (Saint) Thomas More

My Mama said “You really do exist!” We exist! I’m a descendant of Sir Thomas More.

“I die the king’s faithful servant, but God’s first.”

SirThomasMoreparliap1tm

Most famously known as the author of “Utopia”. Yes, that Utopia! He rather die than betray the Catholic Church. And he did. He insisted that his 3 daughters be afforded the same education as his son. He was on a quest of searching, seeking, learning and it’s said he was spiritually troubled. He’s most known for defying King Henry VIII by courage and conscious.

His oldest daughter Margaret was the first non royal Englishwoman to ever publish a work of translation. He did say his daughters would receive the same education as his son.  She did.

Sir Thomas More: Biography, Facts and Information

http://englishhistory.net/tudor/citizens/sir-thomas-more/

The Life of Sir Thomas More (1478-1535)

http://www.luminarium.org/renlit/morebio.htm

Thomas More is the villain of Wolf Hall. But is he getting a raw deal?

http://www.theguardian.com/tv-and-radio/2015/jan/18/wolf-hall-thomas-more-man-honour-fanatic-hilary-mantel

Controversial, a man who could write Utopia and become canonized by the Catholic Church as a saint in 1935. Born in Milk Street, London on February 7, 1478, son of Sir John More, a prominent judge. He studied at Oxford and pursued a career in law.

Utopia was the forerunner of the utopian literary genre.

u·to·pi·a
yo͞oˈtōpēə/
noun
an imagined place or state of things in which everything is perfect. The word was first used in the book Utopia (1516) by Sir Thomas More.

“While his work in the law courts was exemplary, his fall came quickly. He resigned in 1532, citing ill health, but the reason was probably his disapproval of Henry’s stance toward the church. He refused to attend the coronation of Anne Boleyn in June 1533, a matter which did not escape the King’s notice. In 1534 he was one of the people accused of complicity with Elizabeth Barton, the nun of Kent who opposed Henry’s break with Rome, but was not attainted due to protection from the Lords who refused to pass the bill until More’s name was off the list of names.3
      In April, 1534, More refused to swear to the Act of Succession and the Oath of Supremacy, and was committed to the Tower of London on April 17.  More was found guilty of treason and was beheaded alongside Bishop Fisher on July 6, 1535. More’s final words on the scaffold were: “The King’s good servant, but God’s First.” More was beatified in 1886 and canonized by the Catholic Church as a saint by Pope Pius XI in 1935.”  Cit- http://www.luminarium.org/renlit/morebio.htm


I held back on this one.

The bloodline though…

To think (write, create) one way, and be another so deeply. There’s no great divide. It is what it is.

And it’s great!

We are who we are, aren’t we? In judgement and criticism.

Utopia to Saint

It resonates perfectly.

My mind in all that it encompasses.

I really am all smiles.

I pray my children are too as they carry my bloodline. It’s okay to be you! It’s okay to express that which other’s do not accept, appreciate or understand. It really is okay!

That DNA!

(Yes, I know much more about him and well.., like most things… I see it your way, then I see it mine)

With love and light.. x

My Month in Review- September 2015

It’s been a busy month. High energy, highs and lows, mixed emotions and uncertainty amidst certainty. Our daughter’s care went from zero in 2 years to blast off in a matter of 5 days. We made the drive to the Stanford University Medical Center Transplant Clinic in Palo Alto, California. Our son, Ozra (Kurtis) picked Kharisma and I up at 5:00 a.m Thursday morning, September 24, 2015. We were 10 minutes late for the 9:00 a.m appointment. Map Quest- between 2 hours and 12 minutes and 2 hours and 41 minutes away depending on traffic. Between 122 miles and 125 miles each way. It took us nearly 4 hours due to traffic into the Bay Area. We return in 3 weeks and now we know we have to depart 5 hours in advance to reach our destination on time. We tried to take an alternate route on the way to bypass toll fee’s, but hit them anyway. We knew we would anyway coming home. I’m not certain yet if there is another alternate route to bypass fee’s, if there is and we chose it, we would have more time on the road. I’m thinking fuel would take up the same cost as fee’s if we could find one, though I’m not sure yet. Our 18-year-old son paid fuel and fee’s for his sister.

Brother and sister, Kurtis (Ozra) and Kharisma VanFleet at Stanford. September 24, 2015. Ohana.

Brother and sister, Kurtis (Ozra) and Kharisma VanFleet at Stanford. September 24, 2015

Our van won’t make these trips. Our son took time off work to get his sister there and will be doing the same for the next trip. I’m blessed that my children are right there for each other. We learned that our daughter could end up with anything from a partial liver transplant, to the full transplant which was previously discussed due to the location, number of and sizes of tumors. Ablation could be an option in the meantime to slow down the progression of growth while on wait list. At this time her Hepatologist has put together a team of experts to review findings on previous scans and decide which will be the best MRI to do next for comparison since some of the prior’s were off due to type of contrast used.

I’m finally confident she’s in good hands and that we will have definitive answers and confirmations soon regarding her diagnosis and exactly what the plan will be.

On our way to Stanford (Palo Alto), California Photo taken by Kurtis Ozie (Ozra) VanFleet Sept 24, 2015

On our way to Stanford (Palo Alto), California Photo taken by Kurtis Ozie (Ozra) VanFleet Sept 24, 2015


I’m truly honored to have been chosen this month as a 2015 Bakken Award Honoree. Live on, give on.

More to come.


My largest ovarian cyst ruptured last month. My issues there are still ongoing. I had the Nexplanon removed from my left arm Wednesday afternoon (September 23, 2015). I wasn’t using it for birth control (I don’t have to worry about that) but rather to thin the thickening of my uterus, and attempt to ease the dysmenorrhea and menorrhagia. It actually did well for a bit over a year. It stopped the periods for nearly all that time. Until February when I started and have barely stopped since. In addition, a month before that began as an ongoing issue, the bleeding from my other area worsened which led to the Colonoscopy, a polyp being removed during the procedure, the diagnosis of Diverticulosis(itis) when flaring, and a corrective surgery being set up. I’ve postponed that. Once the girl part started like this the Nexplanon really had to come out as it shouldn’t be in while experiencing such symptoms or side effects. Nexplanon Risks and Side Effects.

I’m hoping that the removal assists now to relieve what’s going on. My legs really can’t take all the back and forth to the bathroom, accidents and the mess that comes from bleeding from both places. It really can cause one to become cranky when trying to take care of so many other things at the same time. It kills my leg time for everything else and is most wearing. Contributing to the sleep disorders I already have. Yep, my energy has a leak in it.

My doctor removed it great. No extra surgery needed. Took maybe 15 minutes or so. A little tugging to get it all out. “Nexplanon® is a small tube 40 mm long and 2 mm wide (about the size of a hair grip).” Last night was the sorest so far. Kind of like someone pinching you really hard in the side of your inner arm. Right now, I’m sure it’s healing since the muscle is aching deep, it stings and itches. About a half an inch incision I think. Still can’t it see fully.


I enjoyed writing about the 7 features for Pain Awareness Month 2015 and am thankful for each of you.


A lot more is happening this month. It’s been coming. Some of you can feel it, some of you have awakened and some of you are awakening. Some of you have no idea what it’s all about. It’s already been taking place. September 27th and 28th brings the shift in awareness.

The Intense Effect of the September Energies – Symptoms we all experience now!!

https://edithboyertelmer.wordpress.com/2015/09/18/the-intense-effect-of-the-september-energies-symptoms-we-all-experience-now/

GLOBAL MASS ASCENSION, SEPTEMBER 28, 2015, AS WAVE-X BOMBARDS THE EARTH!

http://zonnews.com/news/654-global-mass-ascension-september-28-2015-as-wave-x-bombards-the-earth.html

September Supermoon Eclipse—Redefining Relationships.

http://www.elephantjournal.com/2015/09/september-supermoon-eclipse-redefining-relationships/


Sometimes I talk about various subjects, babble on, use phrases, words, without stating the entire meaning and people are like, huh? That one must be nuts! Nope, I like to see if you might know, too.

Here it is my friends, I hope you understand a little more now.

Have you wondered why the skies have been so beautiful lately? Or…

On our way to Stanford. Bay Area September 24, 2015 Photo taken by Kurtis VanFleet (Ozra)

On our way to Stanford. Bay Area September 24, 2015 Photo taken by Kurtis VanFleet (Ozra)

If you don’t know, you’re own research will bring you to your own enlightenment until you can feel it for yourself.

With love and light..

My Month In Review- July 13 – August 14, 2015

My Month In Review- July 13 – August 14, 2015

I spent nearly 8 hours with my mom, dad, and sister-niece July 22, 2015, It was the last day. Mom, Dad. Rosie, my husband Erik and I went up to our daughter Kharisma’s job so they could say “love you”, not goodbye. Erik and I left them at the hotel about 10:50 p.m. that night. They finally arrived from Georgia the evening of Monday, July 13, 2015. We spent that evening together. We also spent the next 2 days together. We parted until we spent another 2 hours together when they arrived for our grandson De’Mantai’s baseball game. We parted again. They stayed with my step brother that week. During that week though mom was able to meet with her brother who she has not seen since the passing of my aunt, her sister in 2003. She was also able to meet up with her sister and her niece who she hadn’t seen since either. I didn’t see her at all that week but I am so glad she was able to see her family, go by the house she grew up in, which also happens to be the same one I did as a little girl from the second grade to the start of high school.

I hope that the time will come again that we can all be together at least one more time. But we know this might have been it. And for this reason, so many wonderful photos were taken to last a lifetime.


 

I’ve postponed one surgery for another complication.


 

Our oldest daughter, who turned 27 just a few months ago was put out of work a few days ago for a minimum of 3 months for her Epithelioid Hemangioendothelioma (EHE). It seems to be metastasizing. The several lesions on her liver. One in her kidney, a splenule spleen. Partial collapse of her lungs. Swelling, pain of course, but know what? It’s never over until it’s over.

We are #StrongerThanPain


 

Working on some exciting projects. Privileged to develop the strategy for the Power of Pain Foundation. Blessed to have people acknowledge my abilities and offer me opportunities to try while acknowledging that minimal time can be spent doing it. Yet, also believing that the minimal allotted availability is wholeheartedly used for the project or another given task.


 

Assisting in legislative efforts via POPF, SPPAN, and other collaborative efforts to provide information, awareness and hopeful change in matters affecting pain care.

 


Announcing the West Coast PAIN Summit 2015, Elk Grove, CA – More Info http://powerofpain.org/west-coast-pain-summit on NERVEmber 14, 2015

West Coast P.A.I.N. Summit
Access to Care, Advocacy and Neuromodulation 2015
Hosted by the Power of Pain Foundation and Medtronic Neuromodulation Therapies
Saturday, NERVEmber 14, 2015
2:30-4:30pm
Elk Grove Public Library Conference and Meeting Room
8900 Elk Grove Blvd.
Elk Grove, CA 95624
Elk Grove Library, Elk Grove, CA

Questions: Contact Twinkle VanFleet Director twinkle@powerofpain.org


 

Our daughter Rikki is doing well as a Coroner’s Assistant. Ozra is thriving in work, goals, his future, and advancement/ promotion in the Sacramento Sheriff’s Department Explorer’s Program leading and teaching others. I’m so proud of all 3 of you.


 

I did do something without revealing a peep to anyone. I went through the application process on my own, the interview process, and was accepted on another team. It is independent of the Power of Pain Foundation. It is something I have put off for a few years, but had been asked to consider on a personal level by those associated. I’ve been on board since August 4, 2015. I’ll officially be available on August 24, 2015 or there about for this position. It’s not a paid position. An Ambassador for patient relations. It’s providing my knowledge and experiences to other’s who are either considering or are already using the therapy. I will not be providing any professional, medical, or technical answers. I’m very much looking forward to being a part of this team.


 

 

 

 

TwinkleV and Melody T (Daughter and Mom) July 15, 2015_A

I miss my mama. Wednesday, July 15, 2015. 2 days after they arrived. Sitting outside together.


 

De'Mantai, Mom, Kharisma and Rikki (Greatgrandson, Grandma, Granddaughters) July 13, 2015_A

 

 

Our Grandson De’Mantai Xayvier (‘Tai) who met his Mimi (Grandma) for the very first time, our oldest daughter, Kharisma, my Mama (center), and our daughter, Rikki. Outside together.


 

TwinkleV, OzraV, Mom, and KharismaV July 13, 2015_3-a

 

 

Me, our son Ozra (Kurtis), our daughter Kharisma, and Mama (Melody)


 

Happy 28th Wedding Anniversary Master!


 

“When you think you can’t, maybe you already have” ~TwinkleV/rsdcrpsfire