2021 Reflections

Much of this year has been that of carry overs. In January, I celebrated 2 years of sobriety from alcohol. March will be 2 years of attending my Church on Facebook Live. I haven’t missed a day. I’ve attended once in person and that was just a couple of months ago.

I’m at 557 consecutive days of Spanish. 2 years will be here soon enough.

I started low carbs this March, and in August, Music Movement Therapy.

I had some trial and error with the low carbs, a couple of bouts of Diverticulitis and CKD was riled up for a time being.

I’ve lost about 37 pounds so far. In the last 8 months, I’ve had to do liquid diet a few times to ease the belly and colon pain. I took oil of oregano for that. Anytime, I need an antibiotic this is what I use. Apple juice, bananas, most soups, aren’t low in carbohydrates. I tried not to worry about that.

My mornings are Tylenol, Ibuprofen, or the combination of both immediately upon waking. Coffee, and a few counter stretches.

I make our dinner everyday. I often have food started in the crockpit by 9:00 a.m.

Of course, I scroll Facebook with that first coffee and then feed my dogs.

There’s resting in between it all. My routine is fairly solid. My little exercise session comes next. I generally do my Spanish in the evening after dinner is served. We eat by 4.

I connected YouTube on my TV last week or so. I actually did that to watch Gohl Method videos and demonstrations. Which I’ve done several times now and will continue to.

My workout songs are on YouTube but I’ve been using headphones via my phone. Once I had it streaming on the TV, I did my movement from there. And then I tinkered with other channels.

I’m watching The Language Tutor. Spanish. I like how it’s taught and presented. It teaches the language not just the words. I’ve also watched movies and novelas. English subtitles.

It’s been so important to keep busy, my body doesn’t always go without lag, and some days can be too rough, but I can’t let my mind become idle. It’s the devil’s playground.

I’m still recovering from those mental breakdowns. Sometimes people think once the event or action is over it should all be forgotten and done with.

Thanksgiving Eve 2021 – Stronger Than Pain

It’s not! Now you have to face all the pain, hurt, depression, despair, anxiety, fears, and heartache that led you there.

The aftermath. Repairing. Choosing to live and creating a new path for it.

And then coping with all of the other things that simultaneously occur.

Loved ones hurting, sick, and in pain, helpless, stressors, worry, and caring for yourself all at the same time.

I stay as busy as possible, pray, and love.

Love!

I stay away from drama. If someone messages me negatively about someone else, I’m out! If they contact me because I’m not doing enough, or rather anything, for the Chronic Pain Community, I’m out! If a family member wants to gossip about another, yep, you got it, I’m out! 99 percent of the time, I send them off with love, care, and prayers, and wholeheartedly mean it, and thats it. The other 1 percent is left on read.

Family, even friends, tend to believe because they’re family that they are entitled. They aren’t. If anything, information is a courtesy not an entitlement. I’m speaking of those that I’m not close to in any way not of those I am.

It’s bothersome when they don’t recieve info from us so then they go through the back door to other people to get the scoop on what we wouldn’t tell them.

That’s disrespectful and quite low.

My point is that participating in, listening to, or reacting to such things would heighten my anxiety, provoke depression, cause me to over think and raise my physical pain levels.

There’s no peace in that.

I dont usually make a new years resolution. I can’t take on much more right now physically or mentally because I don’t want to become overwhelmed and crash. However, I’m going to increase my 2 lb weights to 3 lbs at the beginning of 2022.

I’m hoping that low carbs, weight loss, and movement/strengthening increases my energy at some point. I have none and having Narcolepsy and sleep disorders on top of it all is extra challenging. Praying.

I’m going to a Christian Concert December 12. I’ll be able to sit as necessary and stand as able,

My Auntie took me to prayer service the same day this photo was taken. It was a good day! Blessed.

I’m working on getting out a bit more. My social anxiety isn’t in check enough for much and weight bearing is what it is at any given moment. My emotions are mixed. The majority of me doesn’t want to be out in the world at all. Sad.

I’m trying though.

One thing is for certain, I’ll be 3 years alcohol free in about 6 weeks.

Progress continues.

A Sleepless Night

Sacramento is facing a storm. It’s already beginning. I can hear the rain on the windows and feel it run through me. On the bright side, I can literally feel nature, on the darker side why does everything have to be so loud? Amplified. I can’t sleep! I slept until after 3:00 p.m so I’m sure that’s not helping.

We need to leave out of here for our kids house in 8 hours. For one I need to soak in their tub. Ha! Two, I’ll already be there for my son to take me over to cut my hair.

Maybe that’s why I’m still awake. Because I’m not backing out from doing it this time. Anxiety? I’m actually doing something unique in the process. Perhaps others already have. In fact, I’m sure they have, but no one I know has or has even brought it up to me. I can’t tell though for now it’s a secret. I can’t just cut it off and leave it like that. It has to have an element of creativity and still be a part of me, at least. ~laughs

Okay, maybe I’m anxious about Sunday, too.

3 of my dogs are caught up on their shots and tagged. Done! Phew! I still have some really awesome acting opportunities via my casting portal. I haven’t given up those chances since they started rolling in and this time around it’s my choice to do or wait to do. I think. lol. Unbelievable opportunities really. The only difference between then and now is 25 years. Ouch, I know. But my age range is 30 to 60 and that gives me something I would have never had at 22 because at that time I would have been 16 to 30 at best. Woot!

My best asset is the multi ability to play various characters. I’ve had an accent since I learned to talk yet I’m a California girl so it never made sense and no one else around me spoke that way for me to pick up on their talk. I do clean it up for in person, sometimes the phone, but as I grew and diversity became me in other aspects of life, I also picked up slang terminology. Don’t we all? This is my blessing in acting. In Voice, I’m Mezzo. Also known as Mezzo-Soprano. Soprano and Alto. There’s never been anything about me singular. It’s always at least one more or opposites. Yin and Yang.

That’s some pretty deep shit for one who was suppose to be mentally and physically retarded. Who was bright enough to start college at 15 with an education in Law and Drama at the same time. Get it? Only certain mindsets can be either. The law has to be able to know a criminal mind enough (by their own instinct, thought and emotions) to do the job. They have to be both light and dark. And the actor has to be convincing enough in character and/or another persons story to become believable. Understand?

When I write poetry or lyrics not everyone will know who or what is being written about. Why? Because I write it from different perspectives. Some my own, some through the eyes of others or as the voice of someone else.

I love it like that!

My speech ability is improving again for the most part. For a long time I couldn’t talk without stuttering or forgetting on the spot.

I play memory games for recall. Some of my YouTube video shares may show thought, recall, or hesitation, but they aren’t so slurring or stuttered. Really, even though pain had been hard, I’ve continued to do some awesome things. Some of those began over a decade before I ever had CRPS.

When I first left iPain I told myself heal. Just heal. Then I started moving through the 5 Stages of Loss and Grief http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/ even though stage 1 was a consequence of my own actions.

As each new day began, or maybe I should say as each night ended, I would fight with myself over tomorrow. On one side I told myself just leave it all behind. On the other I told myself I couldn’t. It was after the fact that I tried to go back, even if a little, but I was assured that I was done. This was okay because it was me after all who changed it.

Consequences.

Then a couple of weeks later, wow.

We all know or should know that our choices today, may not ever be a choice we’d make tomorrow and choices of tomorrow shouldn’t necessarily effect or reflect on all that was in our yesterday. But they do.

Why? Human emotion. If I feel bad and someone else feels bad a – and a – = -.

In the same sense if each party is in acceptance + and + = +. Yet if one feels bad and the other doesn’t. – and + = negative.

I can make $1 be $5 not just at home, but in business also. I also know $5 can end up being only a dollars worth if not used right.

I’m a critical thinker. http://www.criticalthinking.org/pages/defining-critical-thinking/766 documented and like my grandson ‘Tai who’s been in GATE http://westmore.wusd.k12.ca.us/gateeducation and has received honor roll recognition since he began school (He’s 10), I was also part of the MGM (Mentally Gifted Minds) program growing up.

critical-thinking-3-728

What does all this mean?

I suppose it means

“It’s never too late to be who you might have been”

 

 

Up Above The World So High

I’m beginning to find interest again in all the things I missed out on or failed to even recognize anymore because of pain, weakness and depression. Yesterday I gazed at the slowly moving clouds in the sky all day. Imagining the heavens above and the cosmos as being the same. Wishing I could fall into them like I do with all the feather and down pillows that surround me when I lay down to rest or sleep. I want to play in those clouds and bask in those feathery plush particles above the earths surface.

clouds-sacramento-december-16-2016-image-source-twinkle-vanfleet

Clouds- Sacramento, California. December 16, 16.

 

I had believed for so long that my only worth was in the pain communities and legislative matters that affect people in pain. I haven’t disregarded that belief. It’s all part of my story, my journey, but now I’m realizing that I am worthy of more than just pain.

Pain and pleasure.


Quoted from Twitter @rsdcrpsfire December 15, 2016

“I understand now. You don’t know me because all you met was pain. Makes sense because you never met the person without it.”

“I wish you knew no pain. We’d have never met w/out it & bc of that… I’m grateful that I had to hurt too much to be a part of any of you.”


I’ll never be without ailments of one sort or other, too many, but I can be without most of them despite it all.

I want to wake up to new days now and try again even when I go to sleep hurting from accomplishing things I haven’t done in years. The things I do daily to promote strength and healing. Even when the bouts of MDD and SAD have me sliding a little.

I don’t want to be a person only known for pain because I’m not pain.

I’m  me.

You might even love this person with less pain, little pain, no pain, in remission, more than you ever loved the person who only felt pain and was destroyed over it.

You might.

That person, whoever she was, was the one on TV, in posters, in the news, published in hard print, audio online, etc and so forth. She’s the one who was a publisher, high management, who was always upbeat, playful, funny, and high spirited even in crisis way back when in order to relieve pain from others. And she did.

Every new day is getting closer to that someday that wasn’t going to be possible again in this lifetime.

Now it is.

 

Adjusting

You don't owe anyone anything... You owe yourself everything. By Dyversiti. ResizedIt’s not all sugar plums and dancing fairies even when bodily pain is minimized to any degree.  Especially in the injury that led to RSD/CRPS and the devastating consequences that just hasn’t let me forget. It has nothing to do with the loss of work, inspirations, or goals that might have been. The regret has remained heavy because of the manipulation involved in a decision, one I would have never considered had I not been told from health care providers that doing so would prevent a detrimental outcome and allow possibility in recovering. The choice was for the ones I already had. I never got better and as a result I not only felt deceived but also used to reduce cost and care for both of us.

I’m trying to tell myself this is what it was for. Today!  It just took 15 years to get there. I’ve already told me how stupid I was for believing in others when I knew better and that led to future distrust. I had already overcome, mostly, other trust issues and there I learned to build my wall so much stronger than it was before.

So here I am still trying to clean up my own mess from the first few months of this year and its aftermath that’s only 7 months old that I can’t even throw away as garbage yet because it’s still active with a new appointment in just a couple of days.

Every day that I get better is another day that I ask myself why. What was it all for?

I suppose I’ll just have to wait and see.

 

 

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.

Late Night Reflections

Health, healthcare, and the family unit has remained my focus. Change is constant and adapting is necessary. I’ve made some changes to a few of my accounts as my group is getting out of hand with requests, my inbox is out of control, and I can’t keep up with the repairs. I’ve left several groups and will be leaving others. I’m trying to figure out how to do this without offending anyone. I didn’t join these groups. I belonged to over 40 on Facebook. I’ve only joined 4 or 5 since joining in 2009. 20 of the groups, I’ve never even been in. I just learned how to figure that out, who added me, and when. I had no idea. Shows how little I actually know about navigating the Facebook. What brought this all to my attention was being notified asking how I could be in so many and why I haven’t been blocked from Facebook for joining all of them. Um, huh? Most likely because I didn’t join them. This wasn’t the first time I received a message of this sort, the first time was last year. I removed myself from several groups then. Since then, I’ve been re added, and made apart of even more. It is not that I don’t want to be in these groups or support the people who created them. I don’t have time to offer support, participate. It makes it look to some like I’m just there to, I don’t know, be nosy? I don’t like these assumptions especially when I didn’t join and I’m not able to make it into most of them in the first place. I know not everyone thinks this and some have just been friendly invites of mutual interest. I rarely send out friend requests, and will accept a few. The groups I have joined are unrelated to CRPS.

I’m exhausted by people insinuating that if someone isn’t with them then the other person is against them. People don’t have to like what you like, support it, participate or advocate to remain mutual with you. Sometimes it has nothing to do with not supporting something, sometimes it’s simply because people lack ability to take part. You don’t have to prefer what I favor, but I can respect you for thinking differently or believing in something else. I can respect you for not jumping on my advocacy efforts because you have no interest in it, or are without time or energy to take part.

It changes when there is no mutual regard.

Most people feel that respect is earned. I don’t ascribe to that idea. I respect right away. When I meet you, I respect you. From there it can only be lost.

As I write this, I’m slowly moving back into my bedroom. Just came back last night. I’ve been staying elsewhere in the home for quite some time. I imagine it will take me months. The other area has to be cleared away as well. Some items moved to the bedroom and others to different areas.

My mom, dad and sister niece will be here in 3 weeks. Can’t wait to see them. Haven’t seen mom in years. She just had a pacemaker implanted last month. She’s doing well considering the emergency placement from doctor appointment directly to the hospital for surgery. They are driving from Georgia and taking is slow. It’s important for her to see her granddaughter Kharisma since we don’t know the future of our daughter’s hepatic epithelioid hemangioendothelioma diagnosis. Excited for the time we will have together.

My husband was supposed to have surgery yesterday, yet was postponed. We were told it would be this upcoming week, but no word yet on rescheduling.

I have an ultrasound scheduled for the 29th. That appointment was scheduled 10 days after the surgery my man would have had on the 19th. The ultrasound is for a possible procedure pending results. Not sure as of yet if I will be able to keep that appointment. Doing what I can to get these symptoms.

Our grandson was promoted to the 4th grade. He’s growing up too fast. Our daughter Rikki is doing well.

And finally, our son left home about 2 weeks ago. Exploring life and working on his goals for the future. I know he can be whatever he sets his mind to. He already is!

Daughter, son, daughter, and grandson. (Rikki, Ozra, Kharisma and De'Mantai)

Daughter, son, daughter, and grandson. (Rikki, Ozra, Kharisma and De’Mantai)

“A tiny change today brings a dramatically different tomorrow.”
~ Richard Bach, One