Author: twinklev

Upcoming week

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We’re going over to our daughter Kharisma’s next week for a BBQ. I’m looking forward to seeing her and spending time with LaLa’s mom. Will get over to Ozra’s some time this week. I haven’t seen his new apartment yet. May see Rikki later today.

Started laundry about 6 a.m. this morning. Thinking about a camping trip next month. Don’t think we’ll go for more than a day. Was invited for the few days, but I won’t leave my dogs that long. Just can’t do it. I do love camping though. Great family memories of the times we spent in Rumsey at the Cache Creek Campground in Yolo County.

images - beach1

I like to visualize a little cabin or hut on a beach. No electricity, no internet, bare necessities, a few books, and my dogs. Yes, my husband too but I’d probably be the one to have to hunt for our food, cook it, serve it, and clean up after it.

Never mind! I don’t want the beach anymore. lol

Happy Tuesday!

 

 

 

Cutting Hair

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My anxiety has been a little high over doing something I haven’t done in many years. My husband asked me to cut his hair a couple of weeks ago. I use to cut his hair, our children’s hair, family, I did a few friends as requested. I use to do body piercings for others. I’ve pierced brows, I’ve done Monroe’s, I’ve done bellies, nose etc. That’s something I’ll most likely never do for anyone again. I’ve been asked, I’ve declined. My hand isn’t quite that steady anymore, but I think it’s steady enough to cut his hair.

His hair is really long right now. It’s close to being as long as mine. His hair is curly so the worse result is that any errors will be hidden in shorter curls or would need to be fixed by a professional.

Learning to reduce fears of trying again isn’t always easy, yet to try at all is rewarding. If I wasn’t trying some of these things again, I wouldn’t have ever gotten this far and I doubt I’d get any further.

In pain we stop doing the things that pain prevents us from. We don’t want to hurt more, we don’t want to instigate spreads, or flare ups, we stop using what hurts and we also stop it for the rest of our bodies and the result is deterioration, more diagnoses’, gastrointestinal issues and it’s not all a direct result of originating illness itself. It’s partially due to non use after the fact.

A few months ago, post MLT, the feeling in my middle finger returned, my index finger while arthritic has most of it’s feeling back. It’s just my thumb, inner palm and the part of my wrist that’s connected to my thumb that doesn’t feel fully.

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I wish you all pain eased days and nights.

FDA Study Calls for More Aggressive Opioid Regulation — Pain News Network

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July 13, 2017

By Pat Anson, Editor

A new report commissioned by the U.S. Food and Drug Administration is calling for a sustained and coordinated national campaign to combat the opioid crisis, including more aggressive regulation of opioids by the FDA and a “cultural change” in the prescribing of opioid medication,

The report by a special committee of the National Academies of Sciences, Engineering, and Medicine(NASEM) focuses primarily on restricting the supply of prescription opioids, not illicit opioids such as heroin and fentanyl, which are now driving the so-called opioid epidemic.

“The broad reach of the epidemic has blurred the formerly distinct social boundary between prescribed opioids and illegally manufactured ones, such as heroin,” said committee chair Richard Bonnie, a Professor of Medicine and Law at the University of Virginia.

“This report provides an action plan directed particularly at the health professions and government agencies responsible for regulating them. This plan aims to help the millions of people who suffer from chronic pain while reducing unnecessary opioid prescribing. We also wanted to convey a clear message about the magnitude of the challenge. This epidemic took nearly two decades to develop, and it will take years to unravel.”

The report estimates that at least 2 million people in the U.S. have an “opioid use disorder” involving prescription opioids — meaning they are addicted to prescription painkillers — and almost 600,000 have an opioid use disorder involving heroin.

Although opioid prescribing has been declining for several years and the number of overdose deaths from prescription opioids has remained relatively stable in recent years, deaths from illicit opioids such as heroin have tripled in the past decade.

Read the full article

 

Source: FDA Study Calls for More Aggressive Opioid Regulation — Pain News Network

Personal Commentary: “This plan aims to help the millions of people who suffer from chronic pain while reducing unnecessary opioid prescribing.”

How can it help the millions of people who suffer from chronic pain if opioid prescribing is reduced or denied for said chronic pain sufferers? Who chooses which patients receive or are rejected? The physician or the government?

“The report claimed that many people who normally would use prescription opioids have transitioned to heroin because of the declining price of heroin and the introduction of abuse-deterrent formulations that make opioid medication harder to snort or inject.”

Yet the report declines to mention the many people who have never transitioned to heroin or any other type of illicit drugs.

These reports never mention the vast majority of patients who remain compliant, who’ve never failed a scheduled or random drug screen, who’s quality of life however slight was a quality enough to stay alive for.

Perhaps it’s the people who aren’t in the chronic pain they claim to be that are abusing the system and heading for heroin and perhaps it’s easier to lump us all together for political gain and ulterior motives that have little to do with helping us and everything to do with you. Just you. 

Facebook Messenger

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I’m not all that tech savvy as far as Facebook goes. Especially with Facebook and Facebook Messenger having the ability to be 2 separate programs. On my Kindle I have the messenger app with the chat heads. On my laptop I only ever used the messenger from the main Facebook page itself. On my phone, I never used the messenger app.

Ever since deactivating my Facebook account again, I’ve received a few notifications from messenger on my Kindle. I haven’t tried clicking them open, but I can see the first few words of each message without doing so. I’ve verified that my account is inactive.

I’m hesitant to click on them because I don’t know if it will reactivate my account.

If anyone has any tips or information regarding messenger working as an individual communications platform with Facebook connections, please let me know.

download - logo facebook messenger - icons8

I’m not ready to turn my account back on. I can’t even believe it’s been 10 days since not using it again. Time flies.

Staying in touch with people I currently have no access to otherwise would be nice. I don’t sync my contacts to other programs so I do lose everyone when I take my breaks.

Thank you for any information that you may offer.

Movement

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I love being outside. It’s really peaceful. I did an hour and a half of water workouts. I don’t know yet if calling them workouts is fair. It might seem misleading. All I know is they are workouts to me and I’m going to be really sore tomorrow.

I woke early this morning, prepped dinner, and got a few other things done by the break of dawn. I had slept in late a couple of days in a row and needed to stop that before it became easier to do again.

I was breathing in the late morning air when I started thinking about summer time being over and it being colder outside. I thought that would be the perfect time to use my treadmill. I haven’t quite made it that far yet. I know the weightless water activity is helping more and more each day because movement itself isn’t as difficult. Not in the water that is. There is some difficulty at times not knowing if I should back off a little or continue pushing my threshold. Sometimes I think I’m suppose to be sore because it means I’m succeeding. I remind myself that I haven’t been in horrible pain for months as a result of movement and that I’m doing fairly well not being on pain medication or anti-depressants and that my determination to help myself exceeds any worrisome downfall physically or emotionally that hasn’t come back since my full on self maintenance began.

I love laughing, smiling, being playful, and funny. I dislike having not lost a single pound. Ha! Let me try to give myself some positive affirmations. But you did go down the pant sizes and you have increased muscle. Phew! I’m glad I did that. ~laughs

Anyway, I’m stuck on a series. I started Wentworth and then I started Orange Is The New Black. They both bored me and then Wentworth won for now. I’ve heard so much about Orange Is The New Black that I gave it a go. The first episode didn’t make me feel tingly inside with entertainment.

I’m heading back outside for another hour and then I’m going to be a little lazy and splurge on a couple of episodes before making dinner.

Tomorrow’s going to be a hotter one.

Sunshine

 

 

 

Stronger Than Pain INC

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“StrongerThanPain is officially a Non-Profit Organization in California. Our California Entity number is C4037128 and our Federal EIN (Federal Tax ID Number) is 82-1995726. We have many things that we hope to accomplish in the future, including obtaining Federal 501(C)(3) status. Suicide is something that is not talked about enough and we feel like it should be. We may not be able to save the world, but if we can save one person; that’s what makes it worth it. “I Fight, You Fight, We Fight Together“

~ Written by President and CEO Kurtis VanFleet a.k.a my son Ozra.

https://www.facebook.com/StrongerThanPain/

“Stronger Than Pain recognizes suicide, not as a single entity, but in the vast and diverse entities of life.
We recognize suicide in all aspects of people. We understand that acknowledgement is at the forefront to quality of life, and that prevention is the core source to educate and align hearts everywhere with understanding.

It is our goal to reduce stigma in reaching out, love the hearts in battle, educate our children, and provide resources to under served populations as well as; law enforcement, our military, chronic pain patients, families in crisis, including those families who would never admit a crisis existed. We want to help you be Stronger Than Pain.

We ask that you share with us that which you hold inside and tell us how we might help you to overcome suicidal ideations regardless if you’re “at risk” or seeking to understand and help someone else who is.”

OUR MISSION

Stronger Than Pain Inc.  is a Non-Profit Organization for Suicide Prevention and Mental Health Awareness. Our mission is to educate and support people in our community and around the world. Stronger Than Pain will educate the public by hosting community events and speaking at schools and conferences.

Kurtis VanFleet – President/Chief Executive Officer

Kurtis is a 20 year old from California who strives on helping others. Dealing with the loss of numerous friends and family due to suicide and depression and knowing that we lose over 40,000 people a year, 5,000 of those being Veterans, and over 250 of those being First Responders, Kurtis wanted to see change. He founded Stronger Than Pain with the help of his mother Twinkle, and hopes to help lower the number of suicides per year. Kurtis is a Private First Class (PFC) in the California Military Department, California State Military Reserve and works full time in Law Enforcement.

Twinkle was diagnosed with Complex Regional Pain Syndrome in 2003 after a January 26, 2001 work place injury. She’s lived with arthritis and minor ailments since birth. Spinal deterioration, spondylosis, degenerative disc disease, levoscoliois, diverticulitis, and a dozen other pain related illnesses, diagnoseses and syndromes evolved.
She’s been active in pain advocacy for 14 years and has volunteered both in person and via social media for pain care and legislative policy.
Twinkle is currently a Medtronic Patient Ambassador and NPAF volunteer. Kurtis is Twinkle’s youngest child who was only 3 years old when she was permanently injured.
Twinkle is a graduate of John Robert Powers School of Professional Acting, Modeling and Public Speaking. She started college at 15 with a course of study in Law and Theatre. She studied Corporate Publishing at OSC from 2005-7.
She received the Diamond Homor Award for Poetic Excellence in 1998. She was featured and profiled in the November 17, 1994 Edition of the Sacramento News and Review. The Free Speech Issue went on to receive recognition for 20 Years of Excellence for SN&R.
She has been assisting people through physical and emotion pain since she was a teenager. She is the founder of the RSD(S)-CRPS Advisory websites and support group .
She currently works with the Gohl Program which provides natural relief for chronic pain of all types. Manual Ligament Therapy also known as MLT was developed by Arik Gohl.
For more information or to learn about upcoming MLT programs please Contact Monica Depriest at 931-996-8432.
Twinkle is a suicide survivor.
—
Ozra has many more credits to his name in volunteering, pain advocacy, and law. He’s performed music since he was 8 years old, and is the owner of all of my “intellectual property” since the beginning of time minus a few offset percentages to his dad, sisters and nephew.

He knows your pain, your weakness, your strive and your give up. Your gain! He knows what it means to go on, when going on isn’t that easy. His sisters many years older than him also know that pain. They know the pain of losing all that they had, he knows pain of never having it.

It is our hope to help bring you up from mindset that will take you down. It’s our hope that together we’ll show you, encourage you, and give you the peace of mind that you deserve.

Why would you deserve it even if other people consider you crazy? Because you’re not, not like that.

If I can compare myself to you for a minute, let me assure you that you are worth your life. Can I try at least to assure you that crazy people don’t even know that they’re crazy and I love my crazy and I love yours too. Survival!

How can I help you believe in you when no else does? Can I tell you that if you’ve truly had to fight to feed you or your family, you haven’t done anything wrong. If you’ve had to break the law, you did break it and your consequences will come, but I understand what you broke for.

You’re still good to me. Stronger Than Pain Cover

Help us, help you!

 

Courses of Study

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I’ll be starting a couple of courses soon in subjects of interest and which will be useful in any career or advocacy goals. I’m looking forward to learning more and I’m hopeful that I can pass the finals to receive the certification’s.

It’s an opportunity for continued education while deciding if Vocational Rehab can even begin this year.

I’m still reading Anatomy and Physiology books and I’m just beginning Section 5: The Musculoskeletal System in one of them. I’m really excited about that section. I’m still relearning Spanish.

I suppose the most important part of it all is that however slow at it I am right now, I’m gaining and regaining knowledge in diverse subject matter and that’s enlightening.

images - education

Exhausted

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It’s been a fairly active last couple of weeks. Active for me as I still don’t get out on any kind of daily basis and doing so even a couple of times a week wipes me out. I try to get out as much as I can in order to increase my ability to do so. I do have an appointment with my pulmonary sleep specialist next month to consider changing my sleep disorders medication. I do still use that one. My newer dream machine is helping for the apnea’s again but not in a way that lets me wake up feeling awake and refreshed. They always told me that the machine should provide that. I can see how it’s suppose to as if it assists us to breathe at night then a better quality of sleep should be restored which would mean not as tired. Makes sense. I just don’t feel refreshed in any way. I take the Nuvigil. Actually the generic Armodafinil since it’s now available in that form. The older medication Adderall is what I’m hoping he’ll switch me to even if only for a trial period to test for positive or negative reactions. Nuvigil vs Adderall, The only draw back for me might be an inability to sleep instead because it’s stimulant properties are different from Nuvigil. Nuvigil I can fall asleep on no problem. In other words it doesn’t make me unable to sleep at night. It’s a stimulant but not an amphetamine.  It’s fairly short acting and there isn’t any withdrawal when not having it. 2 months ago I was out of it for an entire month and dozed or slept more than anything else.

I’m still working through all the extra issues that complied on me. Fixing each of them the best that I can. If I have no energy and I’m dragging or just want to sleep it’s harder to do my stretches and routines and if I don’t do those my physical self would continue to deteriorate and I can’t let that happen. Right now my limbs are usable, weak, but stable. I have built up a lot of muscle and returned atrophic areas into less waste yet I can’t seem to lose any actual weight which has to happen in order for me to weight bear and increase movement with less effort.

I’m still making more dinners and enjoying doing so, but I prep it earlier in the day in order to cook it when it’s time. In a way it seems like that’s more work when I could just do it all at the same time. It could be too that doing it that way makes me feel like I’m accomplishing more while also minimizing exerting myself all at once.

I colored my hair a week or so ago. I had so much old mixed blondes in it, the natural dark, and yes silver too (getting old ya know) that I put a dark purple on it to make it all closer to one color again. I want to refrost blonde back into it but I don’t even have the energy for that. I know my husband will help me pull the strands through the cap but my energy level is low for that too. I use to keep it all blonde, I dislike my natural very dark hair, but it’s a lot of up keep, so I just pull the streaks through it and leave the rest dark for a couple of years at a time. My mom had 2 frosting kits and sent me home with one of them.

I wanted to find local work but instead I’m reviewing vocational training so that I can attempt to do something else with my life. My memory issues are bothersome and my ability to retain knowledge is slow. In order to do VR I’d have to rely on my husband to get me to and from. I don’t think I could make it/walk it yet to the bus stop each time without having to sit on someone’s lawn or the sidewalk. I’m still working on my own ability to drive again. At one point I was referred to assistive transportation for people with disabilities but I didn’t have the guts to pursue that option even though it’s suppose to help us be more independent. There’s people out in the world that need those services more than I.

I already started laundry, need to replace bedding today, get outside, do some reading, work on my goals but I don’t think any kind of dinner is getting done today. Not unless the sunshine boosts my energy or inspires me to do so. 🙂

I already want to take a nap tomorrow

Journey On – Elms District

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Elms District – Journey On

You’ve only got one more river to cross
One more storm to go through
You’ve only got one more journey to walk
And know the waters wide
You’ve only got one more mountain to climb
One more hand to reach for
You’ve only got one more journey to walk
And you’re on the other side

You’ve only got one more river to cross
One more storm to go through
You’ve only got one more journey to walk
And know the waters wide
You’ve only got one more mountain to climb
One more hand to reach for
You’ve only got one more journey to walk

On the other side

You’ve only got one more river to cross
One more storm to go through
You’ve only got one more jouney to walk
And know the waters wide
You’ve only got one more mountain to climb
One more hand to reach for

You’ve only got one more journey to walk
And you’re on the other side

You’ve only got one more river to cross
One more storm to go through
You’ve only got one more journey to walk
Know the waters wide
You’ve only got one more mountain to climb
One more hand to reach for
You’ve ony got one more journey to walk
And you’re on the other side
You’ve only got one more river to cross
One more storm to go through
You’ve only got one more journey to walk
Know the waters wide
You’ve only got one more mountain to climb

One more hand to reach for
You’ve only got one more journey to walk
And you’re on the other side

The valley’s deep oh mountain peaks
I don’t wanna lose my way
And hills are steep and I am weak

I’ll journey on

The valley’s deep oh mountain peaks
I don’t wanna lose my way
And hills are steep and I am weak
I’ll journey on(you’ve only got one more river to cross)
The valley is deep o’er mountain peaks(one more storm to go through)
Said I’m not gonna lose my way(you’ve only got one more journey to walk)
And I am weak(know the waters wide)
I’ll journey on(one more mountain to climb)
One more hand to reach for
0h, not gonna lose my way
One more journey to walk

On the other side

You’ve only got one more river to cross
One more storm to go through
You’ve only got one more journey to walk
And know the waters wide
Only got one more mountain to climb
One more hand to reach for
You’ve only got one more journey to walk
And you’re on the other side

You’ve only got one more river to cross
One more storm to go through
You’ve only got one more journey to walk
Know the waters wide
Only got one more mountain to climb
And one more hand to reach for
Only got one more journey to walk
On the other side

Check out

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I spent the morning with my family before check out. Last night was suppose to be G’bye for now, but my husband took me back over this morning so that I could braid my moms hair and see her one more time. They should arrive back home in Georgia in about 10 days.

I was spoiled with other life stories I had never heard, a new bathing suit (Okay not really new but brand new to me. It was my little sisters new one :)). I was spoiled with precious time, love, and new memories with them. They gifted me with a new hip/shoulder bag from Disneyland. I felt like a little kid again. My littlest sister asked me again to move to Georgia, my mom wishes I could. I had made plans to go last year yet there would be so much to do in order to. I’d either have to sell my home or rent it out, repair it before any of that and just toss most of it away. While I want to my biggest concern or worry if you will is letting it all go to start over and then if I lost them I’d be left in a place that’s not my home. It’s only my home because it’s theirs and I’ve never lived there. Home is where the heart is until the heart no longer exists.

I can adapt to change because I have to. I don’t favor it otherwise and I rather not seek it to find it. Ha! Change is really the only thing that’s constant.

“The way up and the way down are one and the same”. ~Heraclitus

This year has truly been a blessing on so many levels. I’ve come so far in such little time. Enlightened at a much higher level. As an empath/sensitive I always carried my pain and yours. And while I may not ever be able to set that aside, I know better to remove myself from such pains that instigate my own.

My physical pain is manageable without any medications. My emotional stability is stable. Neither of these are to insinuate they no longer exist but instead show that even in trauma regardless of the type or anything overlapping that our animal instinct as humans can guide our survival.

What a ride it’s been!

RSD/CRPS and other conditions as well stimulate the stress response. Fight or Flight. Fight or run away. Fight, flight or freeze as it’s also come to be known. If your hungry you’re going to find your food. If you’re threatened your survival instinct is to survive. If you’re in pain your instinct would be to relieve it. Pain of any kind effects our minds. Some people are enraged to hear such things because they have to defend their pain as not being mental. It’s all mental. Without your brain, you’re mind, we couldn’t feel pain therefore mental health is always a coexisting factor.

Isolation.

Aside from having not driven but a handful of times in 17 years due to the CRPS injury and having to rely on my husband and then my children to go anywhere at all and the fact that my drivers license continues to dangle on the edge of suspension due to Narcolepsy, I’m more interested in being able to again than saying I never will.

I’m more interested in recognizing other peoples pain than I am in awareness right now. I love listening to other people’s stories because lets face it everyone is unique in what they endure. Without those people there isn’t anything to raise awareness for.

I didn’t want to see my mom go but I have to adapt again to not having her. I will.

Ozra, Me and Mom - June 30, 2017 resized

June 30th, 2017. Saying G’bye before they drove to Disneyland and the last time my son would be with his grandparents on this trip.

My son has only met his grandparents a few times in his life. My mom and my step father. He’s never met my dad as he was already deceased 6 years before Ozra was born. Ozra has never met his paternal grandparents because they both died years before his birth. I can still remember his little voice asking me “Why didn’t they stay to meet me”?Heartbreaking. Our daughters being much older than him had the privilege of meeting all of them and they do retain vague memories. Happy ones.

Ozra and Mom resized

I have a really tall son! Us girls are all shorties. I’m actually the tallest of my mom and my sister (the one she gave birth to, not my adopted sister. Wait! I’m taller than Rosie, too! :)). My sons dad, my husband of 30+ years is inches shorter. His sisters (Same father of course) have no height either. Our second daughter Rikki is an inch taller than I. Kharisma didn’t get an extra inch. ~laughs. Our grandson is already taller than me and he’s 11.

Progress continues.

If I don’t get outside to my little pool and do my routines, I’ll dwell on not having done it. 😛

I love you mom!