The Rink

Posted by twinklev

It’s been nearly 4 months since I first started the Gohl Program and underwent Manual Ligament Therapy (MLT) developed by Arik Gohl. You can check out my Case Study Documentation or my uncut documented sessions at Gohl Program TV on YouTube.

I had never skated with my 11 year old grandson. My own son who’ll turn 20 next month has no recollection of ever experiencing anything like that with me. I did take him when he was 2 and his sisters were pre teens, but only I have that memory for him. Ozra was 3 when the injury happened that led to my CRPS. Our girls were 11 and 12.

Night before last we went to pick up our grandson and we went skating. Next time it will be both he and Ozra with our girls, and a few others.

We shared on Facebook Live where I did fall in front of everyone, and I did get back up to try again. Here we are, hand in hand, (Pink blouse up against rail).

I never made it around the rink, but I made it onto the rink several times. I watched as people did all the things I once could also. Speed skate, skate backwards, dance skate. I use to love playing red light green light.

I might not be able to do any of those again, but one day, I will make it around the rink at least once.

No inline skating for me, not now, sometimes you have to start with 4 wheels.

Without MLT this would have never been possible.

Packing and Praying

Posted by twinklev

I messaged my son earlier and I asked him to pray for me. I said “Please pray for me that I can do the work and be strong enough to go on with it”. He replied “Always do mom”. I said “Thank you”.

My recent Twitter posts were meant to be known and while I could have held back on the potty mouth it wasn’t all that necessary. Why? Truth. Because that’s the reality in it all. I have my dead daddy’s mouth and while I didn’t use those words when he was alive or even in the first 20 years after he left us I’m sort of proud that it really doesn’t matter in the grand scheme of things. It only matters that I don’t drop those words if I want not to. It’s not beneath me otherwise. Why? Because I’m not above anyone.

Ozra is coming to pick me up on Saturday. We’re going to get this hair cut off. Yep. Most all of it. Short. Most likely to my shoulders or layered down a little farther. If there’s enough without going shorter, I’ll leave it with our girl who owns the shop to donate it.

I leave California the next day for awhile.

Threw some things away today, did dishes, cleaned up, and started packing.

Taking a break right now. I do still use my pennies carefully, but I don’t run out as quickly and that’s a good thing.

I posted about guilt some. The one thing I feel most bad about is not being able to work sooner to fix things before they got so out of hand. Carrying it all is heavy. If one person can’t carry it someone else has to. I did and I will. I have to.

I never stepped away from God and I never stopped praying. I did stop believing in hope even though I continued to be hopeful for one day.

I’ve always known I’d have to live it hard to understand it. Understand what pain is, poverty, loss, and rejection. To love so deeply that it hurts. That’s why I understand that people sometimes have to choose roads that another would never go down and many pretend don’t even exist.

I’m not looking for an easy life yet I’m hoping there’s at least an easier one out there. Hard is good. We learn. Too hard can have devastating circumstances, consequences that can’t be taken back.

My mom said “The reason you’ve gone through it all is because you have a place in heaven”.

I don’t deserve heaven.

heaven

But maybe she’s right.

New Years Eve

Posted by twinklev

My family spent the evening together. It was a last minute, unplanned, lets go out for a bit. Mama’s idea! We had no plans other than to grandson sit if our daughter had any. Ozra didn’t have any evening plans, and Erika a.k.a Erykah had an event to work at 10:00 p.m. I haven’t been out for New Years Eve or New Years Day for many years beyond our children’s home and most years I just slept midnight away. I didn’t want to leave our 10 year old grandson behind and while I might like to party, I don’t. I chose a spot where De’Mantai Xayvier could enjoy the night with us. And that’s what we did. Erik (Massah), Kharisma Anna Magdalena (Maggie), Erykah (Rikki) (and Dan), Ozra (Kurtis) and Austin.

twinklev-and-demantai-xayvier-howard-new-years-eve

Nana and Grandson

Hard to keep up on our names? I know. Kharisma was named after me. Odd right? When I was growing up everyone told me I had a lot of charisma and I was always being told how charismatic I was. I named her for that. And gave her the K. I’ve always liked the unique side of people, places and things, so a C wouldn’t work. I was still a teenager when she was born. I was 18 when I conceived her and she was born when I was 19. Initially our second daughter was to be named Destynee, but I named her after her daddy instead. Erik –> Erika. Our son was to be Atreyu (Son of All) but I named him after his Dad and great great grandfather. Erik Kurtis –> Kurtis Ozra (Ozie). I gave the name Atreyu to another, later. De’Mantai is known as ‘Tai. And then me, I’m called Twink by my family and close friends, but my toddler childhood nickname that I’m still called often and publicly is Ooie. Pronounced 00 ee. oo-ee baby! Then there’s Twinks, Twinkles, and a few others.

So we gathered together for a bit and was home fairly early by 10:00 p.m. Earlier in the day we went home so I could grab that Cymbalta. Being off it was too much! At first I wanted to call it quits since I hadn’t taken it at all in 2 days because I had forgotten to bring it. I’m like, I got this! Well I didn’t. That crap is the devil. At first I only took the 30 mg, but it didn’t stop the feeling of jumping in and out of myself. It’s a hard experience. So about an hour later I took the other 30 and within 2 hours I was feeling better. So today I continued on the 60 and tomorrow I’ll go back to the 30 and hope for the best. I think about 10 days or so to be off it again. My cold is getting better, still have it, but not like it was. Phew! My shoulder is off and on again. Much better than just on.

Going back home this evening after an extended stay at our kids this week. Stayed a little longer because I wanted to minimize becoming sicker for longer when I have things to get ready for. Plus the toilet is torn apart in our bathroom, pulled the entire toilet from the ground and still needed more parts to try to fix the issue. Have those parts now so the man can work on it when we get home. Other repairs and replacements should only take a couple of months. Yay! Once that’s done, I’ll explain and share how other seemingly “impossible’s” are possible.

And with that, you might understand more clearly the last 3 years.

You’ll either be surprised, disturbed or dumbfounded.

In any event,

You might finally get it in it’s entirety. No matter how much I’ve told, left open to interpretation or slipped up on, I’ve never laid it all out for what it’s been.

In this New Year, I will.

Happy 2017

twinklev-rsdcrpsfire-new-years-eve-resized

#StrongerThanPain

Gohl Program | Thank you!

Posted by twinklev

Last year, I can barely recall Christmas. There’s a few pieces and parts, some of it I’m blessed to remember other parts I’m blessed that I’ve forgotten or have chose not to remember.

8 weeks ago I was at the Gohl Program‘s healing retreat in Loomis, California. Sacramento to most people. 5 days of Manual Ligament Therapy, also known as MLT. 16 years after the injury that led to the 2003 diagnosis of CRPS type 2 and subsequent diagnosis’ since.

If you follow my story, you might understand. I’m so proud of my babies and our grandson.

Rikki, Ozra, Kharisma and De’Mantai

This Christmas ..

Thank you Arik Gohl, Dr. Ed Glaser and Monica Depriest.

There wasn’t a cane, or walking stick. No wheel chair, and no laying down in between family affairs of Christmas.

twinklev-rsdcrpsfire-with-grandson-demantai-xayvier-h-xmas-2016

My grandson De’Mantai (‘Tai) and I.

I can’t wait until next year.

Christmas 2016

Posted by twinklev

Christmas 2016- Image Credit- PSDGraphics

The best Christmas I could ever receive is the ability now to use my legs longer, stronger. Longer than just going to the bathroom, more often than just those few minutes at a time. Progress continues. Recovery from pain with the hope to re integrate back into society on a full part time basis. Perhaps one day, full time.Thinking back to the end of August when there really wasn’t any hope left inside me and fear still impacted me greatly. Not because of my legs so much, didn’t think that could be changed as much as it has been, but my spine, neck, arms, my hand(s). How would I do anything losing them? That’s what I had left. In 2013, 4 days after surgery, the second one in a year, I was still trying understand other issues internally. My OBGYN suggested burning the lining off my uterus due to increased thickness. I passed on that and instead chose Nexplanon to control those symptoms. I had it implanted in my left arm so that I could reduce any chance of CRPS spread to my worse side. It worked fairly well until new Ovarian cysts began growing at a rapid rate. I dealt with that with repeated ultra sounds for over half the year in 2015. In 2014 I did though have surgery to replace my internal SCS battery for the next 9 years. Choices. Which was more important. This was. Also in 2015, after a colonoscopy where a polyp was removed from inside there and the diagnosis of Diverticulitis and a few other things, I was suppose to have band ligation surgery to repair those problems. I didn’t have it. I had to have Nexplanon removed due to the cysts. I’ve had ovarian cysts since first discovered during an exploratory laparotomy when I was 22. Not that big of a deal. I did allow that to be recorded and used in teaching hospitals.

I was draining so fast. Physically was one thing already, emotionally became it’s own troublesome dilemma. None of this included family. Husband or children. My husbands recovery from quadruple open heart surgery in December of 2012, or our daughters diagnosis of EHE in 2013 or our sons birth defect diagnosis from Shriners hospital in 2014 or our daughters ongoing appointments at Stanford’s liver transplant clinic, or the other things only a handful of people know at all.

I’ve had 2 documented TBI’s. 1 when I was 17 and the other at the time of the same injury that led to my CRPS diagnosis. In 2013 I was diagnosed by overnight sleep studies with central and obstructive sleep apnea (mixed/complex apnea), cheyne stokes respiration and narcolepsy. I’ve actually had 2 overnight sleep studies and a 2 week at home study using a breathing machine. I was prescribed an ASV unit. Auto Servo Ventilator.

My lower back has been incised twice and my right butt cheek 3 times. Each time over previous incisions. Those things I rarely talk about. Those scars look good though. I sometimes wonder if my belly scar that’s over 25 years old, 10 inches wide or about, torn, and my back scars aren’t contributing to discomfort from scar tissue. Or my belly button due to several laparoscopies over the years and the 4 other tinier scars on my stomach that could be contributing. Maybe not the smaller ones, I have little doubts about my belly and my back because they are front and back to each other. How can anything work right around organs in the space between the scar tissue? I really don’t know. I’ve already had part of my liver removed (2013) and I haven’t had the other lesions on the rest of it checked since. One good thing about the liver is it grows back quickly.

Due to strengthening myself, my internal battery is shifting. It was already fairly low and that’s why I often shift to my left butt cheek when sitting. Otherwise I’m constantly sitting on it. Sore. It’s numb over the scar itself, don’t much feel that, but there’s some intensity outside that area like getting stabbed or socked in the butt all day. I can’t have it checked because I don’t have a provider/physician for my SCS anymore. I have to be careful of abrupt shifting and be mindful not to do anything that will tug the 2 leads on my spine. One of which is center and the other to the right. I also cannot not let it get in the way of healing progress, movement, and all these physical accomplishments.

Earlier this week I took 2 walks 2 days in a row. First time with my daughter Kharisma and grandson De’Mantai. The second time, I was heading off by myself, but took ‘Tai with me. I made it a couple of blocks each way. Without having had MLT (Manual Ligament Therapy) via the Gohl Program, or the custom fit orthotics I might have made that first walk, but wouldn’t have even tried the second. Since summer time, when ‘Tai comes over we do go for a walk. I had already started trying just didn’t get that far. I had to do it around pain being leveled off, not just get up and go. When I had to sit, I’d just plop down on the sidewalk. Ha! Oh and I’m sure my new shoes helped. My feet dislike feeling confined. My toes dislike feeling squished even when they really aren’t.

Yeah it’s good Christmas.

Hoping 2017 becomes a brand new start using all I’ve learned and endured on my path for all the years to come.

Unicorn

Posted by twinklev

Unicorn
by Rosie Broyles Tresca

unicorn-horse-head-with-a-horn-and-wings_318-48956

I am a unicorn

People call me beautiful but never really see me

I am iridescence

changing at every blink and angle

I am newly cut glass

extremely fragile but always shining through

I am a rose

scents that lure you with thorns that prick

I am better

happy and never going back

I am a unicorn, beautiful and real

Written by my little sister and used with permission.

Adjusting

Posted by twinklev

You don't owe anyone anything... You owe yourself everything. By Dyversiti. Resized It’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.

#StrongerThanPain

Posted by twinklev

When I wrote Stronger Than Pain the words had already been my mantra a decade plus before. My mind was always consumed with being able to take that one more step. Just one more step. While the song is written in 3rd person and contains specific words that can only apply to me because of the nature of them, the phrase is universal for those who strive to beat pain. It’s for those who have endured despite setbacks, hardships and loss. It’s for those who’ve loved and lost. It’s for all of us. My son Ozra performed my song, my hope, my meaning but with one difference “She” is also each of you ladies whose pain, passion and purpose isn’t just about you, but for everyone. The full version of Stronger Than Pain has not yet been released and there is 2 versions.

https://www.youtube.com/watch?v=JnYGdpoOaDY&feature=youtu.be

https://www.facebook.com/KurtisOzra

My continuity of care document dated March 22, 2016

Mild recurrent Major Depression

Benign Essential Hypertension

Insomnia

Fatigue

Shortness of breath

Irregular Menstrual Cycle

Menorrhagia

Colon Spasm

Central Sleep Apnea

Memory Deficit

Obstructive Sleep Apnea

Osteoarthritis of Lumbar Spine

Arthritis

Depression

Diverticulosis

Gastritis

Hyperlipidemia

Hypersomnolence

Osteopenia

Prediabetes

Hematochezia

Ovarian Cysts

Reflex Sympathetic Dystrophy

Vitamin D Deficiency

Pain, joint, shoulder

—

Hepatic Hemangiomas

—

This is not a complete list, but I wonder if any of it might cause you discomfort, pain, depression or if bleeding from your butt on a regular basis, trying, striving and hurting from each of the others might be pleasant for you. I already know the answer that may be disguised as “suck it up” when if it was you it might be disheartening, depressing and I don’t know, painful? My empathy runs deep for all those who push on to live with any of the above, and those pain related issues I don’t have, yet understand at a level many never will. I haven’t walked every pair of shoes, but I’ve walked enough to know from first hand experiences that my main purpose is to feel you.

I wanted to die, yet I really wanted to live! I wanted the struggle to survive it to be over. As the world turned, I saw the same 2 walls everyday. Not 4, just 2. It was hard to get up and it was hard to leave the house. I gave everything I had and I gave it for nothing expected. I was ridiculed for not supporting other organizations, groups, people when the only thing true in that was that I didn’t have time or ability to give more when I was trying to give a little for everyone. If I gave absolutely everything to others there wouldn’t ever be anything for me. The “me” is the part that was already doing my best, but few saw that or even resonated with the possibility that I wasn’t okay already. People wanted from me, but there wasn’t any mutual giving back, only taking. I wondered why I ever tried in the first place, but I knew the answer to my own question because that’s what I do. It’s what I’ve always done. I had lost all hope. I did my 5 as dirty as those who failed me did. My husband (30 years married in August, 31 years together next month), our 3 of 6 children and our grandson didn’t deserve my actions no more than I deserved being delayed, denied, dismissed and belittled by healthcare providers, groups, and Workers Compensation.

I only saw that their world .. together, would keep turning and that they with each other would make it without me because they would. I can’t handle the 10’s. The real 10’s. Who can?

“When no one else believes in you…

… You better” ~Twinkle V.

I now see groups named Stronger Than Pain, I see so much out there and I’m okay with that. I’ll never tell you how many years back it goes only that the proof is on you before it’s on me because I’m covered. People are always going to take your thing and run with it. All it means is they like it so much they take it or use it. It’s when they take without acknowledgement that it becomes shady.

There’s so much to tell. I’m not ashamed of my actions because that would mean I’m ashamed of those precious suffering souls lost to suicide. I’m not ashamed of them. They are being held in the hands of God. I can promise you that.

If the first or last thing I can leave you with is something to hold onto, believe in, and accomplish..

Be #StrongerThanPain

and “When you think you can’t, maybe you already have”

I pray that I have and that you have also.

I can never go back, but I can go forward understanding why some people are no longer here.

~Twinkle V.

Thrive | Casting Crowns

Posted by twinklev

“We know we were made for so much more
Than ordinary lives
It’s time for us to more than just survive
We were made to thrive”

“Thrive”

Here in this worn and weary land
Where many a dream has died

Like a tree planted by the water
We never will run dry

So living water flowing through
God we thirst for more of You
Fill our hearts and flood our souls
With one desire

Just to know You and
To make You known
We lift Your name on High
Shine like the sun make darkness run and hide
We know we were made for so much more
Than ordinary lives
It’s time for us to more than just survive
We were made to thrive

Into Your word we’re digging deep
To know our Father’s heart

Into the world we’re reaching out
To show them who You are

So living water flowing through
God we thirst for more of You
Fill our hearts and flood our souls
With one desire

Joy Unspeakable, Faith Unsinkable, Love Unstoppable, Anything is possible
Joy Unspeakable, Faith Unsinkable, Love Unstoppable, Anything is possible
Joy Unspeakable, Faith Unsinkable, Love Unstoppable, Anything is possible
Joy Unspeakable, Faith Unsinkable, Love Unstoppable, Anything is possible

Hey!

We were made to Thrive

—

We were made to Thrive…..

Thrive!

Death: Overdose or Suicide?

Posted by twinklev

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!