MLT Update

Posted by twinklev

It’s been 7 months since I first attended the Gohl Program and approximately 4 months since receiving Manual Ligament Therapy (MLT) the second time. The first time my Complex Regional Pain Syndrome Type 2 was minimized drastically in pain and symptoms. Remission of sorts. I was able to move and stand better. I could bend my toes and come up on my toes. I came home after the 5 days of treatment and utilized the techniques in stretching I had learned from Mr. Arik Gohl. I was able to bend over and touch my toes. I could still come up on my toes with more ease, and I could dance for moments at a time. These weren’t things I could do on the fly at any time of the day, but rather things I could do as I progressed or had an ability to do at any given moment. Or things I was unable to do at any given moment also.

My spinal issues had still been giving me trouble. Pain wasn’t so much in my back other than strain, but in my right arm, hand, fingers. Numbness, tingling, paresthesia. Medical Definition of paresthesia. : a sensation of pricking, tingling, or creeping on the skin having no objective cause and usually associated with injury or irritation of a sensory nerve or nerve root. I wasn’t only experiencing creepy crawlers but intense and moderate to severely painful buzzing that would begin with tightening and pique with an intensity often hard to bear before decreasing. A crippling sensation as my entire arm would lock up for the duration of the symptom. This occurred every few minutes all day and all night long for over a year. I had finally received a cervical injection for C6 and C7 Cervical Radiculopathy. I had the second injection the day before Arik Gohl and Monica Depriest of the Gohl Program picked me up for the healing retreat. I had never met them before. I had also just learned 2 months prior that my CT results listed lost of disc height, Levoscoliosis, Spondylosis, Osteophytes and other spinal deteriorations. I’ve had bone spurs in my right foot and ankle for many years (2003 MRI), my spine I had no idea. Osteophytes are a bony outgrowth associated with the degeneration of cartilage at joints. I knew I had degenerative disc disease upon an imagining diagnosis in my mid to late 30’s. By January of 2016 I had so much physical pain compiled on me, and without pain related treatment or medications that I failed myself in being able to apply my coping strategies I had learned, wrote about and had shared for others years before. My CT had revealed C4-5-6-7 issues. I’ve known I’ve had Osteo for many years but I didn’t have treatment for it.

There wasn’t anything I could do for myself anymore. In that I mean I couldn’t get pain down enough to even try. I continued to dangle on the edge. I had always been willing to try. I tried so many times over the years for bilateral CRPS.

And then I had MLT.

The therapy literally saved my life.

It brought my pain down so much that I was able to become active in my own healing again. I had no one to rely on in healthcare, nothing to relieve pain, nothing to stop my head from spinning over pain. I lost the ability to survive. I went through motions of living, but I had already died inside.

To this day I haven’t stopped my routines in keeping my flesh, my body from becoming so restricted again. Fascia, all that fibrous tissue, connective tissue, bone pain, crps pain, spinal pain. I’ve kept my own pain levels stable.

Check out all these success stories

Gohl Program TV

Gohl Program Webinar – Chronic Pain

Gohl Program Webinar with Monica Depriest

Twinkle V Case Study Documentation

Twinkle V. – RSD/CRPS, Spinal DJD, Generalized Chronic Pain (Full- before and after treatment sessions)

I can’t even watch those videos because I don’t want to be that person. That’s a lot of pain to see myself in because I know how I really felt arriving there. I don’t even look like that anymore and it only took 7 months. I can’t wait until the 1 year mark which will be on my 49th birthday. I celebrated my 48th while attending the Gohl Program healing retreat in October of 2016. I hope that turning 50 becomes everything (or something) that my 30’s and 40’s should have been.

I know that it’s difficult for some to believe how far I’ve come in such little time. I also had a new injury to my right foot which is a month old today. It did cause a setback in my overall progress yet I retained progress in other areas of my body, mind and spirit during it’s healing time. Even in this injury I didn’t take or have access to any pain medication other than having used the topical Voltaren Gel, Epsom’s soaks and ice. Yes ice! I had not used ice since PT in 2002 for the fairly severe injury in January of 2001 which led to CRPS Type 2/Causalgia. This time began almost immediately desensitizing as not to allow a reversal of progress back to full blown CRPS symptoms. I began wiggling my toes the best that I could again. I’m on my road to recovering that foot once more.

My YouTube videos I’ve chosen intentionally to do raw and real for whatever day it is, moment of the day, pain, progress, humor, sorrow. Same with Facebook videos. There isn’t any reason to disguise myself beyond what I am at that moment.

This year is healing for me. I already dropped out of most advocacy related volunteering and awareness activities toward the end of last year. I’ve remained a Medtronic Patient Ambassador which I’ve been since 2015. I’ve attended training webinars, and I represent and support the Gohl Program.

Aside from these I just want to live, love and remain free right now. Find myself, learn myself, laugh and smile as much as this life can offer. 16 years of nothing but pain, disability, uncertainty, loss, lack of access to care, suffering and suicidal actions changed me.

While living keeps throwing it’s obstacles at me, I’m able to get through them better. Yes there are days movement is harder, of course there are moments when a pain rises for a few. While my Spinal Cord Stimulator leveled my legs out, my upper body had no relief. I lived at a 7 with 8-9’s too often. I fell over the edge at 10.

I haven’t been above a 7 at all. When I have been it was a combination of causing my own acute pain from rebuilding bodily deterioration, or from unrelated belly issues. I’ve held well between 2-5. 5 meaning issues not CRPS and my new injury was decently painful at onset.

Can you imagine living in nothing but physical pain and being able to survive it without medication management for pain? I have. Easy? Not at all. It’s been 15-16 months since I’ve had any. It’s turned out to be so very worth it.

I couldn’t have done this without MLT, Arik Gohl, Dr. Vero Lizarraga, Mr. Warren Gohl, Monica Depriest, Dr. Ed Glaser and the after care tools that I’ve continued to provide myself on a daily basis.

blessing-clipart-god-s-blessings-clipart-1

Pain

Posted by twinklev

pain-by-twinkle-vanfleet

Pain is overrated,

Pain is underrated,

Pain is misstated,

Pain is subjugated.

Pain is subjective,

Pain is protective,

Pain is deceiving,

Pain is objective.

Pain is loving,

Pain is restless,

Pain is heartless,

Pain is breathless.

Pain is productive,

Pain is weakness,

Pain is strength,

Pain is forgiveness.

Pain is reminders,

Pain is blinders,

Pain is reckless,

Pain isn’t faithless.

Pain is teaching,

Pain is reaching,

Pain is giving,

Pain is receiving.

Pain is passion,

Pain is purpose,

Pain is humble,

Pain is service.

Sharing permitted without alteration.

wwgrctwvf_rsdadvisory

Making and Breaking Habits

Posted by twinklev

According to Dr. Candace Pert, Ph.D. “our physical body can be changed by the emotions we experience”. http://www.slate.com/blogs/quora/2013/05/06/does_it_really_take_21_days_to_break_a_habit.html

habits1-jpg-crop-rectangle3-large-image-source-slate-com-blogs-quora

Image Source: Slate – Quora

Imagine pain accompanied by negative emotions. It’s a vicious cycle. Stress instigates physical pain and physical pain complicates stress.

If we can replace a bad habit with a new good habit and form a parallel pattern that doesn’t trigger stress we can replace and reset our own ability to break or make a habit well.

Physical pain becomes a habit. We didn’t intentionally cause it, yet many other habits aren’t based on intent either they are learned responses, learned helplessness. Behaviors and habits formed by pain can be difficult to overcome.

Habits are much easier to form than they are to break. Repeating any adverse behavior often enough results in a habitual process and synaptic pathways become worn.

Our brains are most adaptive and change is possible.

Twinkle VanFleet, GohlProgram

MLT and Stretching

https://rsdadvisory.com/2017/01/31/mlt-and-stretching/

Babies – Hands on

https://rsdadvisory.com/2017/01/31/babies-hands-on/

21 days to make or break a habit?

Today

http://www.today.com/health/think-itll-take-21-days-make-your-resolution-habit-try-2D11826051

WebMD

http://www.webmd.com/balance/features/3-easy-steps-to-breaking-bad-habits#1

Yahoo Answers

https://answers.yahoo.com/question/index;_ylt=A0SO8wWxvpRY0oIAh0NXNyoA;_ylu=X3oDMTEyYTN1MDl1BGNvbG8DZ3ExBHBvcwMxBHZ0aWQDVUkyQzNfMQRzZWMDc2M-?qid=20080210120707AAquMAY

HOWSTUFFWORKS SCIENCE

http://science.howstuffworks.com/life/inside-the-mind/human-brain/form-a-habit.htm

http://science.howstuffworks.com/life/inside-the-mind/human-brain/form-a-habit1.htm

Quora

http://www.slate.com/blogs/quora/2013/05/06/does_it_really_take_21_days_to_break_a_habit.html

Babies – Hands on.

Posted by twinklev

Imagine new born babies, when they cry, we soothe them. We massage their tiny bodies with our hands and comfort them. Most of them stop crying. This is an example of direct hands on therapy. Imagine what the baby would do if not soothed, rubbed down, comforted physically. They would remain in pain and as time moved forward they would not know to feel anything else.

comforted-babies

It’s not so hard to see that physical ease also releases emotional pain. A crying baby is experiencing both simultaneously.

Imagine aches and pains that aren’t associated with chronic illness and what people experience in body already.

Chronic pain becomes seemingly unmanageable because inflammation itself continues on until it’s eased and it attacks everything else our bodies are.

We can prevent those domino effects that occur as a result of an original illness or injury.

We’re prescribed pain medications to assist a health related quality of life (HRQol). We’re implanted with technology to relieve pain in order to establish this QoL. This is what these are for. If we take the medication or use the devices, we’re supposed to be using them for our benefit, well being, not just taking them or having them to continue to waste away.

Understand?

GohlProgram.com

Learning and Healing

Posted by twinklev

At this time day after tomorrow I’ll have already changed flights to be on my way to my destination. I’m excited to learn and heal even more. This will be the first time since I was 17 that I’ve flown alone. I’ve been on flights since but never without my husband or children. The last Amtrak I was on derailed outside of Fresno California on the way to Corcoran. Initially that trip would have only been Ozra and I. Husband and Kharisma came at the last minute, Rikki was already in Corcoran with my mom and dad. We only sustained cuts and bruises. I can still remember grabbing for my baby as he tumbled and pushing Kharisma into my husband so he could hold onto her. I was the one injured the most but that was a result of my own actions to be sure the 3 of them would be okay. I never feared pain back then. Perhaps because it was acute pain or injury. I think that was mid 1997. My mom and dad were married in 1998 and this was before that. Ozra and I had taken the train several times from Sacramento to Corcoran. I haven’t been on a train since and within 3 years we’d lose our home and everything we worked for in the prior years to a fire, I’d be injured at work and not give birth to our last child due my own body during physical rehab and the medical mistakes and manipulation that followed.

I’m not afraid to fly. I love flying. ~laughs

Ironically the day I leave California, January 8th (2002) is the anniversary of that loss nearly 12 months after that injury that led to CRPS. Maybe I can finally let it go. Maybe.

I didn’t realize until later what the manipulation was all about and that’s why it’s stayed with me. And that’s why I always believed even when my faith was dangling that I wouldn’t hurt hard forever but I’d have to suffer to get there.

I want to help people feel better and find joy and laughter again. I want to be apart of showing others that there is an option for pain relief in MLT and the Gohl Program and I want to be apart of it in person, not solely online. I don’t want to live online. The internet does give a modicum of life back to people who are otherwise unable to have one. I know because I’ve been one of them. The internet also removes in person interaction and that’s why so many of us become isolated and develop social anxiety disorders. I still can’t drive but there may even be possibility in that again.

I have a lot of work to do to reverse 16 years of physical and emotional deterioration. I also know hard isn’t over yet, but it’s the beginning of living something I really don’t know to feel without pain. I’ve used pain as pain relief, a distraction. Pain diverts pain after all.

Looking forward

Image Source: PJ McClure

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

2017

Posted by twinklev

I sound like a tease, huh? That’s because I am. 🙂 Sorting out how to start a new life, and be productive in society differently that I had been. Anxiety? Yup. Yet nothing of what it had been from fear of uncertainty and distress.

Deciding what to take and what not to. Not taking this laptop. Don’t need it. Where am I going? For now, just going.

Valerian root is helping. Drinking a lot of water to flush Cymbalta back out of me as I wean off it again. Got me covered on abrupt discontinuation this time.

I’m so happy my kids can just breathe now and my husband will be okay, too.

I have to be blessed for 2016. Without all that it’s been 2017 couldn’t have the same chance.

A brand new journey. One that in time I’ll share more of.

Came out to the porch a bit ago. I do love sitting out here when I’m at the kids. Still the only one up. Am awake early often now. A good thing. In bed really early most nights. E and K are going to R’s today. I think I’m going to stay here and move some files around, continue to watch the shows I have paused on Netflix and I don’t know, maybe a nap. Trying to get rid of a cold. Probably need to up the Vitamin C. Finally my eye is healing yet again. It’s really just become an annoyance.

I was thinking about one more piercing. All of mine represent a significant event in pain. Would love one that doesn’t mean pain at all. If my body rejected it though, I wouldn’t be a happy camper.

I suppose too there’s only one way to find out.

But for now, I need more coffee.

just-breathe

Video Diary | YouTube

Posted by twinklev

I started a video diary of sorts last night. Looking into learning voice recognition software, too. Takes a lot out of me to type. My lower body is doing amazing. My range of motion is incredible. I never held back on that. If a doctor said raise your arm, I just did. Squeeze their fingers, I just did. I didn’t show weakness like that even if I was screaming in my head.

Injuries in the same time period as I’ve been healing? Several. How can someone heal and be hurt at the same time? My perception of them isn’t the same as it was before. I’m not sure yet if it’s because I’m trying to learn my body as mine, or if I’m still disconnecting it as being separate from myself. In any event these injuries and pain that ensues from injuries or trauma hasn’t stopped me from my daily routines of strengthening. So what happened to my hands? I got in a dog fight. Ha! My left hand was bit, photo is 3 or 4 days after. My right hand, I’m not sure. Either mirroring left side, or from nerve root issues from my spine. Maybe. My foot is almost always banged up, but no additional swelling really. It’s actually doing really well considering. Without having had MLT, I highly doubt I’d be handling any of this. In fact, I’m fairly certain that I wouldn’t have accomplished over half of it. I do know that I had already been trying since summer time to strengthen my bilateral CRPS because my upper body had become so bad. Unrelenting on my right side without any assistance in health care at all.

twinkle-v-rsdcrpsfire-right-hand-right-foot-december-18-2016

December 18, 2016. Right hand, right foot.

twinkle-v-rsdcrpsfire-left-hand-december-18-2016

December 18, 2016. Left hand.

I’m going to stick with holistic, or old ways of reducing pain. Healing and progress in body, mind and spirit and I want to learn from the people who practice it, use it, and I want to be someone who can utilize ancient healing, natural remedies, herbs etc instead of what’s just chaos in western medicine.

Still learning YouTube, uploading. Spend a lot of time reading books or articles on my Kindle. I try to get on Twitter to peek about a couple of times a day, and now I’ll share videos as able, but otherwise not too much else related to online.

Pain, passion, purpose, poetry, politics, philosophy and progress is all that’ll be covered in those video diary shares. Mood dependent of course. 🙂 #StrongerThanPain

Each day I find a little more peace in all of it. Maybe one day I can simply be peaceful.

Maybe.

Public Apology

Posted by twinklev

I extend to each of you, any of you that I may have offended over the last year an apology. I’m not sorry because I did anything wrong, I’m sorry because I lost control of managing pain. I inclined my head to bullies, I smiled, and shrugged off any compromises. I shimmied on like I never heard, never seen it, and rarely did I admit to knowing it.

I’m really sorry that I let Facebook bring out the worse in me. I’m still trying to understand this for myself. I let it become a “I don’t care” platform to anyone who either stalked me for their own organizations or disliked me for the one I was with.

Reductions in stressers and triggers have me feeling so much better. Better able to continue on with strengthening myself, stretching, moving, healing, accomplishing.

I don’t want to care about what I let you see toward that end, yet I do. I don’t want to care about who you thought I was before it all. I will. I may not always understand why from your point of view but I understand from mine the persona I threw out. I think that I demonstrated fairly well by shoving everyone so far away and eventually giving people a reason to gossip with potty mouth words and pretty photos that I achieved what I wanted at the time. Disconnect.

I never wanted to get close to people, so I kept everyone at a distance. I would reply to the questions regarding CRPS/RSD, Chronic pain, SCS, legislation, depression that you asked, but I’ve not in all my years using the Facebook Platform engaged on a personal level with more than I can count on one hand. Only one person in the pain community knew me, enough.

Wow, I must have issues, right? Yes. I can’t do the gossip, drama, he said she said, did you hear what so and so did type of stuff. Why? Because I haven’t the time or concern for it.

Any relationship can be repaired enough for people to respect that agreeing or disagreeing on something isn’t what defines them, but instead that which allows them to proceed forward with an open mind. Learn from one another.

If was in an IM with only 2 or 3 people a day, exchanging 5 messages each. I’d never be able to do anything constructive, maintain pain levels, scrub my toilet. One has to always be available at some point, even if not on the spot, to reply, and then the conversation continues until it either trails off or is abandoned. For those of you who do engage all day long. Kudos to you. Friendships? Okay. Communication? Okay. Support? Understood.

Facebook; the place you can check into, but hard to check out of.

I’ve been running on empty with anxiety highs and shifting depressive moments this entire year. Trying to manage both chronic pain and narcolepsy evenly for myself. I did do it on my own. No one’s taking that from me.

I can recall pieces and parts of this year as if I was viewing an old 8MM reel of 2016. I can recall vivid moments, yet I’ve lost other memories and I really don’t know if I ever created them in memory to be able to remember.

That’s how the mind protects itself from trauma and perceived threats.

I’m not much different than all of you just uniquely challenged. Some of you the F word is in the first sentence, others, rude, opinionated babble lacking knowledge, certainty, or open mindedness to learn the facts before stating inaccuracies.

Hypothesis? Please do present with an educated guess before assumptions get the better of you.

Ad hominem;

Argue the topic. Don’t attack the person as an individual, you know, the people you judge without even a presumption because you know it all and per your perception they’ve done it all wrong, already? Attack the position, not the person.

Online is too much people at all given times.

Notice how I said “Too much?” rather than “Too many?’

Be good or be good at it! Choices.

Overcoming The Stress Response by Twinkle VanFleet 3/9/15

https://rsdadvisory.com/2015/03/09/overcoming-the-stress-response/

I don’t want to be associated with pain, chronic pain, illness, disability, any of it.

Not on a personal level.

I never did.

My denial was my acceptance all along because I’m still on my legs. I’m not incapacitated. I’m not in that corner by myself yet watching the world move and unable to move with it or be a part of it.

Today I found the wedding vows we wrote to each other when we renewed in 2012 for our 25th wedding anniversary. That was the first I ever walked down the isle to him in a Church ceremony. I’ve been his since I was 17. I got this! For us.

I’m sorry I showed you someone I’m not. I’m not sorry that it wouldn’t be beneath me to act in any type of way dependent on a situation.

I’m sorry too for those who couldn’t ever ask, but assume, and for those who knew they were inciting confrontation when they chose it. That’s where I had enough. That’s where I changed.

There’s consequences in choosing.

For all of us.

~Love and light

Transition

Posted by twinklev

waterfireheart Turning pain into her greatest asset was like turning water into wine by the bitter and sweet essence of nature. She waited. Wanting to become numb and no longer feel, but she also knew she would have to feel to understand. She knew that without walking shoes of others that she could never really embrace what they’ve gone through or was heading for. She would have to go there, too.

She began to think that her heterogeneous spirit was equal to an ugly duckling swimming alone in a vast pond of siblings. She wanted to feel everything and nothing at the same time because she was the light and became darkness through the worldly conflicts of being human in the first place.

Transitioning through the elements of water and stepping barefoot through the fire of both pain and passion to uncover a balance of consciousness and self awareness that had become divided long ago.

To find out who she was…

…she would have to meet herself first.