Sacramento News & Review November 17, 1994 | Speaking Out

I’ve spoken about my diverse advocacy efforts prior to chronic pain, yet never really produced much factual information. 21 years ago, I was featured in the Sacramento News & Review’s Speaking Out edition. My letter is what got me there. While I don’t have that letter on hand at the moment , I’m very much looking forward to sharing it when it’s located. I do have the following…

 

SacramentoNews&Review November 17 1994 Speaking Out Cover Twinkle VanFleet

 

The American Family Association instigated a ban on advertising which was located in the back pages of the SN&R. Today it could have been considered both an equal rights issue against certain alternative lifestyles and free speech censorship, but back then it was just hateful and discriminatory.

SacramentoNews&Review November 17 1994 Twinkle VanFleet Profile Page 28 Speaking Out Edition

 

Of 11,000 signatures in support, 11 individuals were profiled. I’m one of those 11 and the first on page 28. My last sentence is in reference to other’s who shouldn’t have been suppressed for their own rights to publish or receive publishing.

 

SacramentoNews&Review November 17 1994 Twinkle VanFleet

 

 

My husbands support, our signatures.

 

SacramentoNews&Review November 17 1994 Speaking Out Edition Date Twinkle VanFleet

 

 

 

 

 

The date, November 17, 1994.

 

Sacramento News & Review 

Twenty years of editorial excellence

#13

FREE SPEECH ISSUE: Our November 1994 issue marked the culmination of a five-month censorship battle the Sacramento News & Review was engaged in with a right-wing group called the American Family Association.

 

We won!

 

I’m honored to this day!

~Twinkle V.

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California Labor Code Section 4600.2 | Workers Compensation | Be Advised

If you’re a California Injured Worker you may be receiving a letter similar. Previously, I declined this mail-order pharmacy which was solicited over the phone as an option. On July 18, 2015, the letter I received states that as of August 1, 2015, all Workers Compensation prescriptions will be filled through a remote mail-order pharmacy only. As I researched, I learned that two of the main reasons is for cost reduction and because injured workers supposedly demanded their prescriptions to be filled at certain pharmacies. Really? You mean you couldn’t contract with legitimate pharmacies that are in good standing? You think injured workers are trying to rip you off? We don’t have anything to do with the cost of pharmaceuticals or medical supplies. I think you’re trying to put me in a compromising position by forcing me to have medication delivered where I can’t be absolutely responsible for its delivery. I tried this once because you tried to sell me the plus side before I opted out and continued to decline again. What happened? The box was left out front for anyone to take. I never knew when it would be here. You know darned good and well if a patient calls to say their medications haven’t been received they are not going to get them again. There are laws in place for this. That is why when at my current pharmacy they know when the medication is ordered, filled, when it is picked up and by who. There is no discrepancy. You can’t control the mail service, the delivery person, the time of day delivered, or any potential consequences and neither can I.

“In the event a medical emergency arises and it is not reasonably and immediately possible for you to obtain the required prescribed medication through our selected pharmacy Benefits Manager, Helios, please visit a local network pharmacy in your area.” Again really? Who’s going to note in the permanent record it was an emergency and the reason for an alternate and local location? I don’t want my PDMP (CURES) showing different pharmacies. You know, pharmacy hopping and all.

ArrowpointCapital - TwinkleVanFleet

Additionally, I was given less than 2 weeks notice of this sudden change. I haven’t received the “enrollment package” and it’s the 24th. So I suppose I should be the one to run this Helios down?

Helios

Yes, you have been able to reach me by the phone several times. I said no thank you, told you why, and I wasn’t told I couldn’t choose to decline. Please refer to your recorded calls for quality assurance.

At least have the decency to be truthful and the common courtesy to be on time. Wait! The last 14 years have been full of denials and delays. Yes, of course, this would be last-minute, too.

UNDERSTANDING & IMPLEMENTING AB 749 – IV

La Pagar Kajira

La Pagar Kajira

ellajC

by Twinkle VanFleet

Without forced, mislead intentions

Entrusting was his heart

Nothing ventured, nothing gained

Unless sincerity tore it apart

Bridges burned, abandoned

Embracing a future anew

Stepping over piles of rubble

Took on another view

Finding contentment and solace

That some had torn away

Strength, support and conviction

Tamed sorrow for another new day

He knew passion and fear existed

Beneath the pains she hid so well

The afflictions inside, she expressed it

but really who could tell

He could lead her toward survival

She could serve with fire or ice

Submit to another tomorrow

Make the best of a challenging life

Grow with determined ambitions

Retaining a slaves pride and grace

Surrendering into his will

That ashes have come to replace

Obedient, im-bonded, subservient

A woman, mans truest treasure

A pleasing, passionate, fiery slut

For his heavenly erotic pleasure

Maybe in his chains and at his mercy

Perhaps once, a preconceived idea

Still nothing but his slave girl

La pagar kajira

©2006-2015 Twinkle Wood-VanFleet/ellajC

For viewing purposes only. May not be copied, reproduced or altered in any way.

Has been published at alternative lifestyle, Gorean, and poetry sites throughout the years.

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

One of my very best!

(Peer review)

Lost Inside a Memory

 

LOST INSIDE A MEMORY

by Twinkle VanFleet

CloudsofHope

LOST INSIDE A MEMORY, WANDERING HELPLESSLY IN THE PAST-

INNOCENT AND CONFUSED, GROWING UP WAS MUCH TOO FAST.

LIFE WAS IN THE FAST LANE, PEOPLE FALLING DOWN-

INFLUENCE CONTROLLING LIVES, TEMPTATIONS LURKED AROUND.

UNSURE ABOUT TOMORROW, HOW COULD I HAVE KNOWN-

I WAS JUST A GIRL, BUT SOMEDAY I’D BE GROWN.

REALITY INCURRED MANY CHOICES, THOSE I WOULD SOMEDAY MAKE-

CONSEQUENCES WERE SURE TO FOLLOW, UP ROADS WHICH I MIGHT TAKE.

TRAPPED WITHIN THE MEMORY, I SEE A LITTLE GIRL I ONCE KNEW-

SAFE AND CONTENT FROM TOMORROW, OUR FUTURE HAD NO CLUE.

I MOVED ON WITH ALL STRUGGLES, SHE REMAINS PERFECT AND PURE-

I WOULD BECOME WHO I AM, TUCKING AWAY MEMORIES OF HER.

FINDING MYSELF BACK IN REALITY, WHO KNOWS WHERE IT MIGHT BE-

YESTERDAY, A SOUL DIVIDED IN TWO- ONLY THEN THEY BOTH WERE ME.

©1997-2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.

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

Written in the 80’s.

http://www.poems-and-quotes.com/life/poems.php?id=194458
Submission date : 2004-11-17

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My family Week in Review – July 12, 2015

My family week in review July 12, 2015 – July 18, 2015

Part 1

Mom didn’t arrive from Georgia until Monday evening on the 13th.

I seen her walking toward our parked vehicle. I was so excited as I hurried to try to make my way out of our van to the tiny form in a distance. Kharisma reached her before I did. As I continued to approach, I saw my Grandma. Suddenly, I thought I might be in a dream within a dream. When I hugged her for the first time, I really did hug them both in the flesh. I could feel the energy. For the initial embrace it was only my grandma (my moms mom) I was holding onto, who I had my arms wrapped around. This little woman was hugging me back tightly, but I wasn’t understanding where mom was and in the same instance, by and from grandma, I could feel the energy transfer, I was given my mother. And the tears rained. As sudden as they fell, they retreated. Mom was right there. If I was dreaming, I had woken.


 

My mom has lost over 100 pounds. She’s been in kidney failure for a couple of years now, but is not going forward with dialysis. The bottom of her heart is dead, the reason for the emergency pacemaker placement just weeks ago. I’ve been trying to find a way to get to Georgia, but prevented by obstacles. With my daughter’s diagnosis, they planned to try to come to us instead. Mom wouldn’t postpone. Dad got her here.

Mom hadn’t been back in Sacramento in 12 years. She had planned a visit that turned out to be for the funeral of her sister, instead. My Auntie’s passing July 17, 2003. My uncle took her off life support to relieve suffering on their wedding anniversary.


 

It is overwhelming to create so many new and wonderful memories with your mama, yet at the same time try to cope with the ache, heartbreak and understanding that forever is right now.


 

When I was a teen, my dad was diagnosed with lung cancer. He was 47, I was 15. He had a partial lung removed. Eventually recovered. He made it the 5 years. Suddenly it returned so aggressive by the time it was found it had eaten his ribs and broke through his posterior chest wall. 5 weeks from the time we learned it came back, to his death. By this time, I was 22. My mom and dad were managing a motel in Chico CA. I was driving back and forth from West Sacramento to Chico, 2-3 times a week. Instead of putting my dad in a home to pass away, I had him transported by ambulance to my and my husband’s home with our 2 little daughters, ages 2 and 3. Hospice came in to help me. We turned our living room into a hospital room of sorts. A hospital bed, trapeze, hoist. My dad was already paralyzed from the waist down due to the cancer. I was his caregiver. Both of theirs really. Both mom and dad. He was a no code. I remember in the hospital when they were discussing his options, I wasn’t having him going to a care facility to die. And I knew already in my young life how it must feel to have to go away, be sent away just to die somewhere unfamiliar. I told him I would take care of him, both of them. His wall came down and he said “there is no place I would rather be than to be with you”. There was no place I rather them be then with me, too. My dad raised me strict. I never defied him. So when he was adamant about his “no code” I had to be so very strong to uphold his wishes. The hardest thing I ever did was let him go. Loosen his gripping hands from the hospital bed rails, close his eyes, whisper in his ear I loved him, that I kept my promise, that I would see him again one day, crisscross his arms over his chest and lay him to rest before I woke my mom who was asleep beside him on the couch.

When I brushed my fingers across her shoulder and said “Ma”, she knew. I can still remember the screams. My neighbors brought coffee. We notified family to come see him before the coroner came to take him. My husband and his own dad did all the work to get my dad his 21 gun military salute. A precious memory in itself because my husbands dad passed away 10 months later, and my husbands mama a year after that.

There was family who was upset at me. Why didn’t I call 911? Why would I do that. Well, why did my dad put it on me to honor his wishes? Because he knew someone else would have him revived just to have to die again. I not only honored him, but the law. So in all those why’s to me, why would I not gift this man the last thing he asked for?

And yes, I almost did start CPR. I almost did call, I almost let him down.

It’s not for the person we do these things it’s for ourselves. It’s selfish to force someone alive because we can’t bear to lose them.

We took care of my dad at our expense. All the equipment was provided as lenders from Hospice. Food, special food, like ensure (or equivalent), popsicles, toiletries, lotions for his legs, electricity all those extra’s. Paid for it all. Never applied for a caregiver allowance. In his last days, he couldn’t eat, or drink. So I did little things to try to entice him. Licks of popsicles, milkshakes, if even a baby spoon full. His tongue was so raw, he couldn’t really swallow. His bottom was so full of bleeding sores he was embarrassed for me to change his diapers. Mom would do most of that part, so he could keep his dignity. So his daughter wouldn’t have to see private parts. I think he was trying to save mine, too. It usually takes awhile for bed sores to form. For him and the extent of the cancer through out his body it was really awful.


 

My mom continued to live with us. She wouldn’t get up. All she knew was my dad. They were together since she was 19. I had to go back to work. Bills needed to be paid. I had to let the pursuit of my acting career go. I had just graduated from JRP Talent earlier that year. I was really on my way. Family first. Family remained first, I went back to work at Eppie’s Restaurant in West Sac then to Huey’s Diner which was being built from the ground up. Hired on the spot. That’s where my Restaurant Management career started. First as Head waitress, then as shift supervisor, assistant manager and then General Manager. I made it to GM in less than a year. I was barely 24. I started at Eppie’s when I was 18. I’ve worked at Eppie’s 4 times, and Huey’s twice.  Both of them for a time being.

I was finally able to get mom up and about. She would come up to Eppie’s for coffee. I introduced her to new people. All my people. Work and friends. Encouraged her. Did everything I could to remind her she had to live, go on. One of my customer’s offered her a job across the street from where I worked. Later, she started working at the 49’r Truck Stop. That’s where she was when she had a dream of the past. She was able to find her high school sweethearts mom and from there him. They have been together since and married nearly 18 years now. Mom moved to him in Corcoron CA about 20 years ago. After their marriage they started their life in Georgia. Sometimes when I write about dad I mean dad and sometimes when I write about dad, I mean this dad. It all depends on the context of the share.


This visit is the first time our grandson has met his great grandparents. Even though mom is trying to meet up with her other family while in town too, and dads as well, and I am so very glad they are, they still made it a point to be at ‘Tai’s ball game yesterday. He was so excited.

Tai's ball game July 18, 2015

More to come

My Week in Review- July 5, 2015

My week in review- July 5, 2015 – July 11, 2015

4th of July at our son-in-law to be and daughter’s was a nice one despite the fact 2 of us were missing from the evening. Ozra spent it with his girlfriend and our grandson spent it with his dad and family. We didn’t do any firework’s. That’s something we would have only done for De’Mantai. It was always a tradition for the kids. We passed this year. We did though sit out front and watch other’s in the neighborhood do theirs. Not loud at all. Just the little festivities of cone fountains on the ground. The BBQ was amazing. We were home about 4 hours after arriving.

On July 6th, I received a call from my Gastroenterologist that I wasn’t expecting at all. In April I was diagnosed with Diverticulosis in the recto-sigmoid colon and the sigmoid colon by Colonoscopy. At that same time I had a polyp removed. Benign inflammatory hematochezia. So we increased fiber intake. That was my plan. It was in January when the bleeding became a constant. Prior it was often, but not each time. Diarrhea was something I could no longer stop. Several times a day to the point I had to prepare to leave the home unlike before. The call was to start the process for surgery. Endoscopic band ligation.

I had just received the results of an ultrasound that one of the cysts on my right ovary had doubled in size and that I needed to repeat it in 8 weeks. That would be in about 6 weeks from now at this point. I’m not sure though anymore what is causing the most discomfort as so much is overlapping in my belly. I’m not even sure if my July 2013 diagnosis of hepatic hemangioma is still playing a significant role. That pathology was benign hepatic parenchyma with erythematous of the liver. I’ve basically just learned to deal with it. It has bothered me that my daughter was diagnosed with hepatic epithelioid hemangioendothelioma (EHE) which is rare. Mine is more common. Both can be genetic. The only reason mine were found is because of my second Gallbladder surgery, where a portion of Gallbladder had taken on new growth and had become stuck to my liver. When the rest of the gallbladder was removed so was a portion of my liver and some of the lesions as well. I’ve never had any followup since the post op. What do you do when you have too much going on within your body? Especially when they also know you’re also a chronic pain patient? I had never hit a wall before 2013. I never felt the judgement many spoke of. Not until all those trips to the ER during the 4 month wait on the scheduled surgery. Those trips didn’t do me any favors. I’m sure it made it look like I was seeking. Especially when on the last visit I declined another ultrasound do the severe pain, and I declined pain medication. Yet was prescribed a couple of days of Tramadol, I suppose for good measure. I really needed what was wrong fixed. When my surgeon did get inside me, I had been hemorrhaging. His own words to me at my post op “Thank you for making me believe you”.  I wanted to cry! But I didn’t! Maybe someone could have believed me before that! Thanking me after the fact. After I made myself look like a fool for seeking help, begging really. Honesty really can backfire. Just because my ability to hide pain is just that, hidden, doesn’t mean it wasn’t there. I’m tough when it comes to the pain scale. When I see people online say they are at a 10, I doubt it. Why? Not because I doubt you’re hurting but because 10 is a number reserved for the worse pain of all. When people say their pain is a 20 or 100. Nope, sorry! Again, I believe you’re hurting, I believe it may be hard, I can’t believe it’s the 10 described. When you’re at a 10, you’re out of your mind, you hurt so bad being online, visiting, doing anything even for pain distraction doesn’t work. It can’t work. 10 means medical intervention. I mean seriously, you think you’re dying body and mind. Even when I did go to the ER, I never told them 10. Most likely 8. Even people who don’t believe are praying to God at a real 10.

No one is going to take us seriously if we tell our doctor, a new referral or an ED physician we’re at a 10. No wonder the pain patient is often doubted. This is when assessment is most important.

Pain behaviors- I’m really good at not showing these. Partly due to the Functional Restoration Program I completed in 2009. Prior to that I was fairly decent already. Why is this so important to me? Because while CRPS alone has me in a non stop state of burning, stabbing, throbbing, piercing, bee stinging sensations and living in my head all day long, I want to appear as a productive member of society when I am out and not be noticed as having any illness, disability or limitation. I’ll do what ever I can to be mindful to not grab at an area, or focus on it. The only behavior I might show from time to time is shifting and I can fake it to make it because other people shift and change positions in their seats, too.

However, when in an emergency situation I’m not sure if I’m failing myself or if those medical professionals are failing me. Pain behavior’s are also indicators. High blood pressure (or too low), sweating, vomiting, complexion, the eyes, skin, breathing, temperature. Hyperventilating. These are objective.

If they don’t believe in us, how can we believe in them.

I told the GI that I needed time because my husband was scheduled for surgery on the 10th. Which he has now had to repair a tear in his shoulder. It’s taken 2 and a half years to get his surgery so there was no way I would interfere with it happening. He’s doing well so far, although it has only been 2 days. Due to his quad bypass in December of 2012 and his history of 2 previous heart attacks before that. They did take special precautions by placing an arterial line to monitor his blood pressure in real-time rather than using the cuff. He was under general anesthesia and given a full block. The block lasted the first 24 hours. He didn’t feel any pain during that time. I’m so glad. He was kept in recovery longer that usual, but we were still home the same day from the outpatient procedure. He was really taken care of by his surgeon, anesthesiologist and after care team.

The first thing I did was call my Pain Management Physician to let them know about an upcoming surgery. I have a pain contract. I’ve been with then since 2004. Work Comp/CRPS. Pre planning in case I need to take pause from care to be treated through my primary. One should not be prescribed by separate physicians especially if it may involve a pain reliever.

My ability to breathe is worsening and I’m not sure if it’s due to internal pressure, my Central Apnea, (I have complex/mixed apnea) or Cheyne-Stokes. Air is like a water faucet that’s been turned down or a drowning feeling. Sleep disorders seem to be getting worse, but I can’t tell if fatigue is contributing. I should be feeling better since my Pulmonary Specialist helped me with a medication about 5 months ago to assist wakefulness. I do get the wakefulness for a couple of hours. All I can think is that there’s so much blood and water loss, dehydration could be contributing. Doc said to keep the fiber high and use OTC to help time spent in the bathroom.

Someone replied to one of my posts the other day “boy, you guys have had a year”. It’s been non stop since the start of our sons freshman year. 2011. Ozra (Kurtis) had a severe brain injury, frontal lobe bleeds, and more. He was in PICU for a week. I stayed the entire 9 days in the hospital with him. My husband had his second heart attack, he was 42. He had his first at 37. December of 2012 I stayed the 10 days at the hospital with him when he had his open heart surgery, quadruple bypasses. 3 of those days, I stayed in the van, storming rain. I couldn’t be with him yet. 2012, I also had my first Gallbladder surgery. 2013, ERCP, second gallbladder and partial liver removal surgery. 2014, SCS battery replacement (phew, easy), all of us numerous appointments, our son’s diagnosis from Shriners Hospitals for Children, our daughter’s diagnosis and extended hospital stays. When my husband came home from his open heart surgery, I was his only caregiver. I had to figure out how to lift him, care for those incisions, his chest, the 4, 2 inch horizontal’s where each tube was placed beneath his diagonal chest incision, the one from his wrist to up (near where blood is drawn) approx 8 inches, the 5-6 inch on his leg. I had to take a class in the hospital. They did teach me how to swing him, and his legs in and out of a position. Get him to his feet. I was exhausted. I thought the flare up was from over exerting. During this same time I was already having belly pain, but I thought it was left over pain from the surgery the year before. It couldn’t be from the Gallbladder. I didn’t have one. 2 months after my husbands surgery he was able to get me to the hospital. Way too funny! Not! I had Cholecystitis and there that story begun. So yep, we’ve had a year! Several.

Eventually I’ll share all those other things I haven’t spoken of in the open at all. I hope that by doing so, someone out there finds hope in believing there is always a way to overcome. I might not prefer my journey, but I’m blessed by it. By every situation, every struggle, every brick wall, every pain and emotion and every mountain I climb, each keeps me doing what I do best.

If you wonder why I share these stories it’s so that you know you aren’t alone going through tough times, struggles, living with physical pain or emotional ups and downs. So you know that families have it hard too. Not just the patient. Caregiver’s don’t have an easy job taking care of their partner’s. Children are affected whether minor or adult. Never knowing if someone’s day will be the better one or the worse one, each and every moment can change without notice, never knowing when a snap will come, or how you should handle it. You can’t baby someone with chronic pain. All you can do is educate yourself on their condition so that you can understand it. Be supportive, but also not allow them to limit themselves beyond actual limitations. Encourage actual limitations that can be overcome. Learned helplessness occurs by waiting on those who are not well and the person will think they can’t do something they can do. After awhile it becomes a part of their illness and disability when it never was and was never meant to be. It’s just something created that evolves. This becomes another problem of its own. Then when you don’t do something for the person they think you aren’t supporting or caring when really the opposite is true.

I know because I’m a chronic pain patient and a caregiver.

I’ve been working on my will. In California it really doesn’t need to be complicated. A handwritten will is a legal document. It can be as in-depth or as simple as needed. The most important factor is that it is legible. That is my challenge since many have a hard time reading my handwriting. Being ambidextrous I favor my right hand for writing it, yet I have a deep left-handed slant. Of course my husband gets everything, but there are a few personal items that I’d like to leave to specific people and places. There is one item I’m having a hard time deciding on. Perhaps it belongs in a history museum or the like. It’s nice to know my copyrights are mine 70 years after my death, but I’m looking into that, too. In addition, those pieces written under pseudonyms, 95 and 120 years after is nice too, but again, options.

Mom was supposed to be here from Georgia on the 10th too, then delayed until today. The trip is hard on them. They should be here by tomorrow if all goes well. I just can’t wait. It would be an awesome surprise if they made it in tonight after all.

Our daughter has her appointment on the 29th for her EHE. Hoping we can get better answers this time, a treatment plan.

Had a really great meeting on the 9th. Apart of an amazing team. Looking forward to continuing to learn, grow and evolve with each of them.

Still working on an exciting project, too. The elements continue to evolve. It’s not my project, I’m just one of the elements. The end result is going to be incredible.

MyGirls&I_4thOfJuly2015_Kharisma-Twinkle_Rikki

 

My girls and I – 4th of July 2015

Kharisma on the left

Rikki on the right

Still

#StrongerThanPain

Crushed

Heaven

Crushed
by Twinkle VanFleet

Crush
Do what we must

Splendiferous
Love is us

Hardship
Seemingly unjust

Pain
Body and soul

Faith
To feel whole

Loss
You lose

Gain
We choose

Survive
A bitter-sweet divide

Actions
Go forth

Implement
A forgiveness course

Internalize
Hush, hush

Onward,
Crushed.

©2015 Twinkle Wood-VanFleet/Golden Rainbow Poetry/All rights reserved.Unauthorized duplication prohibited.
Copyright Laws and Regulations of the United States Copyright Law of the United States

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