Understanding My Truth

As I approach my truth from an entirely different perspective, I’ve realized how much I overcame from the beginning. The very beginning. I had always known that I had survived inside my mom even after she lost my afterbirth during her 6th month of pregnancy. This is also known as Placental Abruption. I’ve always known that it was suggested I may be born physically and mentally handicap. I later learned what my dad and grandma had been told by the doctor. I’ve always known that I was lucky to have been born into this world at all. There’s an overwhelming sense of peace in learning what I hadn’t understood before in the “could have been or should have been” aspect of me. I always knew I was different from all the kids or adults I had ever known. I’ve always been quite quirky. My mom had always referred to me as perfect. She would say it to me over and over again as I grew and she would tell others that I was as well. It was a standard no one could live up to. In my 20’s I told her to stop saying that to me. I never had any leeway for mistakes and my personality type while A became mixed with other types and traits. My mom and I were extremely close when I was little and my dad was a hard father. I was always held to expectations I never thought I could reach. Both of them couldn’t have raised me any better. I love them for that. I was born seemingly fine, outside of any hard defects and was full term. I was a forceps delivery. I understand now why she told me how perfect I was. I would tell my “different” baby that too. I knew I was born with arthritis and ailments of the neck/spine, but I really didn’t know myself different in that aspect because being born a certain way becomes you. I’ve always had hearing loss, but again because I’ve never been able to hear any other way, I don’t know it to be unusual. My tone of voice as well as the tones I hear are unique. The only time I can tell my hearing is off a little is dependent on frequency and vibrations around me. Sometimes I get louder when sounds are louder. My own voice becomes distorted in my ears by pitch around me. Second grade or about 6 years old is when we learned about my hearing loss. Before that while in the first grade and at another school, I can still vividly remember having to go to speech therapy because I didn’t talk right, or pronounce words correctly. I was a little slow. In that I mean that I was delayed in some learning abilities yet I was also extremely bright at the same time. I was wearing glasses in my second grade photos. I woke up one day in that same year and never needed them again until prescribed for the second time when I was in my early 30’s. I was reading well by the time I was 5 and writing poetry and stories by 7. My ability to walk when I first began was a bit off. I didn’t know that until I listened to my mom tell Dr. Ed Glaser of Sole Supports and the Gohl Program while in Tennessee a few months back. I can still remember my pediatrician always messing with my legs even when my sister didn’t get her legs tested? at our checkups. I’ve always been drained of energy. I’ve always slept too much. My normalcy wasn’t consistent, but neither was my little impairments. Tiny jerks, dozing, sudden lapses, momentary confusion, knowing to go left, or being directed to, and starting to go right. Breathing has always been a problem for me. Not because of any direct lung issues but because of forgetting that I’m suppose to.

This past week I had another Pulmonary Function test. I was asked if I was born premature, I said no. The question was asked in regards to Central Sleep Apnea and the high amount of central events that my last sleep studies revealed from 2012 and 2013. 51 in an hour. The events aren’t recorded as an episode unless one doesn’t breathe for either 6 or 10 seconds at a time, I can’t recall at the moment which for certain. I had 28 Obstructive events in the same hour. I was placed on an Auto Servo Ventilator by RESMED/Philips. The exact model is here.  I quit using my breathing machine some time ago, after my decline in pain management.

I’ve had the aches and pains all my life, but I couldn’t show it. I learned to disassociate myself with anything disabled because I was able. So I held it.

It’s been quite a journey and all I know for certain is that I am product of fetal brain damage, I haven’t been able to breathe since inside my mother and I doze/dream/sleep/awaken different than most.

My mom didn’t do anything wrong in her pregnancy in regards to each reason that can cause CP. There are only 2 that would apply to her as a cause. 1. Multiple pregnancies (carrying more than one baby) and 2. Injury (as in a car accident, etc).


In a recent Facebook post I said

Twinkle VanFleet

“I never believed that disabled children (as you will) should be treated and raised disabled. I believed that they should be nurtured and supported to thrive, loved. I believed that they didn’t need the world on them to judge them. I believed from somewhere deep down inside that “and I posted this to my own son when he was diagnosed finally with a birth defect” I said “Go on as if you never knew you had it”. As I get closer to my truth, I understand why I have those beliefs in me. And I’m okay that.

You’re baby can’t crawl? Don’t put the toy closer, make her/him reach for it. I promise you, most babies will. You’re teenager need a wheelchair, don’t! As a parent you want to ease them, you’ll also cripple them further. You’re kids can’t play sports? Yes they can. It doesn’t matter how slow they are, might be, could be,, it matters that they are playing with everyone else.

I’m not talking about the babies that had to have the wheels in the first place. Had to. Feeding tubes, hard physical/mental. I’m talking about everyone who becomes disabled as a result of not just the illness but the parents who bring them up that way. I was blessed. So blessed that mine didn’t. And I never knew. I didn’t want to know, as it lingered inside me, but you know what? I came up from places no kids will never be. Most babies born like that, or I was, haven’t ever reached my potential. Lauren Wood you were a hard daddy, who loved, but didn’t ever let me be anything other than what you believed me to be, Melody Wood Tresca you are a loving mama, the both of you did right by me. I love you for that.”


I never could see/feel things that most others did. Ethnicity, lifestyles, people, color, differences, etc. I didn’t know if that was natures blessing on me, compassion, or…

One of my friends said to me not long ago, she was telling me about her husband and physical changes, hair. I’ve known them for a long time, I’ve met them in person, and have seen them live. I never realized that he was experiencing what she was describing. I never saw that even though it was right in front of me. To be honest, I had to go pull a recent video to see.

I’ve always loved learning, I can’t get enough. I’ve always loved teaching and passing on what I learn. The last 6 months have been healing on so many levels. I started to want to force people to dislike me because I never really felt accepted right, wrong, or indifferent. There always had to be something I had done wrong even when all I knew was that I hadn’t.

I don’t think it would have made a difference that the world knew my brain is faulty. The problem wasn’t with me it was with humanity, judgement and perception.

Life, love, liberty, lessons,
Faith, trust, intense, impressions,
Hope, laughter, healing, rain,
Cleansing, blessings, clearing pain.
©2017 Twinkle VanFleet

“The placenta nourishes a growing fetus. If it is compromised, such as in placental abruption, the unborn baby may be deprived of oxygen. This can cause stillbirths, premature births, or future growth problems. Oxygen deprivation can also cause brain damage, including cerebral palsy.

When a baby’s brain is deprived of oxygen during pregnancy or birth, parts of the brain may begin to die. This sort of brain damage can result in developmental problems, motor skill issues, and other symptoms of cerebral palsy later in life.” http://cpfamilynetwork.org/placental-abruption/

To be continued

PDF- https://www.gstatic.com/healthricherkp/pdf/cerebral_palsy.pdf

Cerebral Palsy Guide https://www.cerebralpalsyguide.com/cerebral-palsy/

What is Cerebral Palsy https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research

Definition of Cerebral Palsy http://www.cerebralpalsy.org/about-cerebral-palsy/definition

Fetal Asphyxia https://www.ncbi.nlm.nih.gov/pubmed/9683410

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Fine Lines

There can be such fine lines between doing and not doing, trying and not trying enough, managing time and wasting it, finding balance and not balancing at all.

I’ve driven now twice since not having drove but a handful of times in 17 years. While both times were only a few blocks away it is a starting point. Next time I’ll turn left and go down farther to the shopping center about a mile from home. Most likely repeating that quite a few times before trying further.

I’ve hit a few lows in wondering if all this is just too good to be true. This is because in order to maintain pain relief from the original CRPS Type 2 diagnosis and the several secondaries along the way, I have to do physical routines daily in order to keep it from ever being what it had become. These routines can cause their own pain because of the lack of activity and movement as a result of the injuries and illnesses that either initially or had eventually overcame me. Many of those things that I did to comfort myself from reaching the edge were some of the same things that were to my own detriment. Hanging my legs off the bed in order to try to sleep because my feet and legs were either too swollen, allodynia, hyperalgesia, burning etc. Using pillows, several, in order to prop myself into positions to ease pain, but at the same time it taught my body to develop even more damage.

Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better. ~Samuel Beckett

We aren’t taught how to be able to care for ourselves in simple manners that are the greatest of all. We’re told go exercise, lose weight, quit smoking (if you do) and that’s about it anymore. Great advice, but it’s only advice. There isn’t any teaching in it and people leave still wondering how, how in all of it. If you have chronic pain of any type it’s because something in you, illness or injury has lasted beyond 3 months (used to be 6 months for that classification).

Some people do get the pain medications, the opioid management, pain management, lumbar or cervical block injections, procedures etc. Yet none of these get people healthier again. None of them teach living with pain. They either disguise pain awhile, fail, or side track a person from learning how to themselves. Other medications such as SSNRI’s and Anti Seizures such as Cymbalta and Neurontin are over prescribe, handed out like candy and more adverse than the opioid itself. I promise you that. Opioids taken responsibly is less a problem than the lifetime problem that stays with you long after getting off those other types. We may have natural opioid receptors in our brains, but our brains (and minds) aren’t meant to be altered to the point future damage.

I’m not anti opioid.  I’m anti leave someone where they are when there are other options in relief that aren’t suggested or believed in by mainstream western medicine. I believe in CAM or Complimentary and Alternative Medicine. I believe in the Gohl Program. I believe in Integrative Pain Medicine.

Yet these services are rarely offered, or are not covered by insurance. I myself was denied for Acupuncture my second year into all this. (2003). I could have been cured, or in remission right away, but instead we keep people bouncing the healthcare systems, costing billions, left disabled, unable to contribute to society, getting sicker when we have the capability to get people back into their lives. If we do, even more billions are lost in profits, revenues and work for the working class. Damned if you do, damned if you don’t and that’s the world we live in. If it’s not about me it’s about you. Will it ever be about us? I already know the answer to that.

I’m glad that The Academy of Integrative Pain Management previously The American Academy of Pain Management has merged the concept of healing by both standards of care. I’m thrilled to have been a State Pain Policy Advocacy Network Leader (SPPAN) which is a project of of the AIPM/AAPM for several years. I’m happy to have been former California Ambassador, Executive Board Member, Advocacy Director and Healthcare advisor for the International Pain Foundation 2011-November 2016. I’m happy to still be a Medtronic Patient Ambassador. I’m glad to have represented iPain as a member of the Opioid Prescribing Taskforce via the Medical Board of California and for being 1 of perhaps 3 patient advocates who were apart of the Revised Standard Guidelines for Prescribing Controlled Substances For Pain. I’m happy that I attended with and testified on behalf of pain patients with the California Medical Association (DeSaulnier)

I’m not happy that I fell hard in the midst of the CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016 as they were being implemented, recommended and circulated. The Guidelines for Prescribing Opioids for Chronic Pain CDC. I’m blessed to be part of the public record, written and on the last call pertaining to the Guidelines. The call that determined whether or not to enact the recommendation. Which had been determined before the call had ended in case you didn’t know.

Instead of saving lives and allowing physician’s to care for their patients under their own oath it instilled fear in providers to prescribe or even address pain at all. I do not care that the Guideline’s were meant for primary care doctors because it caused fear for all doctors including pain management specialists.

I have to be a responsible patient, yes? I have to be in compliance, yes? Yet there is little to no responsibility or consequences for non compliance in others or those who believe they are above anyone else. Everybody’s pain day will come, if even by old age alone.

I’ve lost my reputation online, but offline my words are different. I’m different. This doesn’t mean I’m a different person it means that perceived perception, written content and context is taken as you will. Believed or Imagined. Generally just a fantasy in your own minds.

I’m diverse.

Online I no longer care. I’m both polite, knowledgeable, caring and I’m blunt, potty mouthed and adverse. Yesterday was the 1 year anniversary to the second time I attempted suicide as a result of pain and errors and not just my fear in it all, but the fear in overdose, the fear to prescribe, the fear to keep your medical licenses, the fear of the DEA, the fear of scrutiny, the fear to take care of your own families and I actually understand. I actually feel your side of it. I feel you when you’ll do almost anything to maintain your reputation even if you’ll lie to do it.

When you can feel my husband of 31 years side of it, or my 3 children’s broken heart in it.

 0000746_i-love-this-crazy-life_265

Maybe I’ll care again the same way I used to. Though I hope not because I really cared too much about everyone else, what ever one else needed, or wanted. Right now it’s all about me and overcoming the challenges of living through what I can’t ever change for me in this lifetime, or what I can never take back in the option of suicide, but I can still help change it for others.

They are fine lines, after all.

 

 

 

 

 

 

 

Review – Gohl Program | Part 4

Review – Gohl Program | Part 4

believe

It’s not yet been 6 months since first attending the Gohl Program healing retreat. Let me begin by saying that your journey is yours in pain; my journey is now mine from pain. Nearly all of us share, raise awareness, learn, teach and offer support to others. Many belong to or own groups, websites, blogs, are a not for profit or are a part of nonprofit organizations or businesses doing the same. My main goal is sharing my progress and healing after receiving Manual Ligament Therapy to proffer hope where hope had no longer existed for me. To share this option for chronic pain relief, testimonials, webinars, case studies, until people believe impossibles are possible. While everything I’m doing now may not be directly related to the Gohl Program it is because of it. An example would be the use of fresh herbs for their medicinal properties instead of the use of Over the Counter medications. The Gohl Program didn’t tell me to go home and do these things. I chose to continue the holistic course I had already begun as part of my overall healing experience.

On February 26, I shared to Facebook:

February 26 •
#MLT #Fact = In what became 4 months (2 days ago) since my first treatment session at the Gohl Program Arik Gohl, I’ve been able to:
1. Move my toes
2. Bend over to touch my toes
3. Raise my legs
4. Walk without assistance, or needing to stop a few steps later.
5. Walk to the store (A couple of blocks, each way)
6. Dance
7. Sleep better
8. Re quit Gabapentin and Cymbalta
9. Squat
10. Adjust my spine to better alignment when sitting, laying down and standing.
11. My Spinal Cord Stimulator has been off since hours before my first session on October 24, 2016.
12. Did I mention dance?
13. Regain strength in my upper right extremities. Raise my arm, move my shoulder.
14. Since my last treatment in January of 2017, I’ve been able to regain better use of my right hand and fingers.
15. Belly flares (Diverticulitis, Gastritis, Kidney, Liver, etc, general inflammation and associated pain) has been reduced in the duration of time and discomfort associated with those diagnosis’ and symptoms prior to treatments.
16. I skated with my Grandson for the first time in his 11 years of life on February 18, 2017.
17. I’m not prescribed opioid pain relievers (nor have I had any since February of 2016)
18. Mr. Arik Gohl, Mr. Warren Gohl, Dr. Edward Glaser, Dr. Veronica Lizarraga, Ms. Monica Depriest, the Gohl Program and MLT literally saved my life.
19. I’m living 16 years later without pain being a constant physical and emotional reminder of what I couldn’t do, shouldn’t do or would never do.
20. I’ll never quit again.
~Twinkle V.

On March 4th:

March 4 at 12:57am •
After a fairly intense moment with the dad Mr. Warren Gohl, Arik Gohl’s father, who I’ve been blessed by, I left my emotional garbage in a rock filled parking lot in Tennessee. I left the beginning, I left iPain, I left my Facebook deactivation and the reasons why, I left advocacy and awareness for which it was, I left the medical mistakes, I left the pain I caused my children, I left thinking I wasn’t a good wife anymore, I left the hurt of believing I would never be anything more than I was and that I wouldn’t go any farther than I had. I left the gossip and the whispers. I left caring too much. I left being a pain person. I left the end of it all and a new beginning was born. Because of that my path was paved in a new direction, and if I worked for it, I could be free of all that it had been and find peace in a forever where pain wasn’t my captor anymore, but instead a reminder that if I hadn’t endured all that I had physically and mentally, I’d never be right here, right now.
There’s no other place I’d rather be.
Can’t never could do anything anyway.

On April 3rd:
April 3 at 7:50pm •
There has only been 4 years scattered among the last 17 that I haven’t had major surgery, procedures, or blocks. There’s been several times over the last few years that I was cut cold turkey off of medications and went through hard withdrawal. No opioid withdrawal, just an increase in pain as a result. I’ve had other major surgeries prior to #CRPS, one of which kept me out of work for 3 months. I never filed for State Disability. I went back to work as soon as I was cleared to. After #CRPS I still fought by butt off to beat it enough to manage and the secondaries began and my entire being was overcome with all of it. Finally dropping out of the healthcare system was the best thing I ever did. No one asked me to, no one told me to. The stress itself of waiting on authorizations, scheduling, how to get to an appointment, who to rely on, all interfered with more than they helped my ability to cope. And I know many of you go through the same thing. We dwell on the unknown and that in turn raises physical pain. Physical pain then instigates stress and emotions and you can’t ever get out of it. Until you understand that you can.
No one wants to believe in anything other than surgeries that rarely heal us. Especially if we can’t do the followup care for ourselves for them to be successful. Few want to believe in anything other than pain medications and I know if it’s all you have, it’s all you have to survive and I understand that more than you may realize. People lose themselves to pain. You all have one way or the other. Few are taught basic techniques for self care, and healing,
I talk about stretching and people freak out. I talk about the decrease in my own pain and people think I couldn’t have ever been as they are. I talk about progress, everyone wants to know how, but then can’t believe in it. Not even as an option to share.
If you can suspend your disbelief long enough you might get at least part of it in the overall meaning of what we’re all capable of doing for ourselves or with the assistance of a caregiver until we can. When you have an open mind, you learn. Closed minds leave us right where we are in any circumstance.
I was heading for reconstructive spinal surgery. I was already scheduled for banding ligation, and I cancelled my last cervical spine injection.
I chose to go off the last 2 medications I had only restarted the month prior to receiving #MLT. The program didn’t ask me to, or imply that I had to. I quit Gabapentin so that I could feel any changes without something overshadowing it.
I quit Cymbalta so that I could just be me.
How could I do all this?
GohlProgram.com
Since the first post containing the 20 points, I’ve also began using a stationary bike, I worked myself up from light stretching to being able to do another exercise/stretch to strengthen my neck, shoulders, back, stomach, legs, arms and hands. These stretches and techniques were directly taught to me by Mr. Arik Gohl and are not what is taught or expected in traditional physical therapy. Traditional PT is often unrealistic with exercise or stretching prescribed that is beyond an expectation to succeed. Rather, most patients are set up to fail and because of this many never recover.

On the query “Do tendons feel pain”
Answer: Most people feel a general achiness, stiffness, and pain. Symptoms can occur throughout the body. Any soft tissue (muscles, tendons, and ligaments) may be affected.

There are over 900 ligaments in the human body and more than 100 muscles, tendons and ligaments in the foot alone.

If you can imagine then that when our feet are properly aligned and supported solesupports.com and when our feet and body is relieved with Manual Ligament Therapy that chronic pain conditions can be eased, cured, or that remission really is possible even in the most complicated cases.

I said cure didn’t I? Cure the word that’s become taboo when it comes to the supposedly incurable. Trust me, if someone threw around the word cure to me, I probably wouldn’t have believed, but I would have looked into it. If I knew someone that went from 0 to living I’d be watching and listening intently on their progress, setbacks, or healing.

I did that with Ketamine. I seen results and so I wanted to for myself. I just never had that opportunity. Now I’m glad that I didn’t. 1. I would have had another chemical in my body. 2. I may have come to rely on it. 3. Its hard having relief of any kind and having it either taken away or become unavailable again. With the Gohl Program there isn’t any taking away because it’s up to you whether you do or don’t after the treatments.

I imagine that I’m in a time where healthcare as we know it now doesn’t exist. I imagine what I would do for myself to live through colds; flu’s, promote healing in injuries, acute or chronic pain and I remember that it wasn’t even so long ago that my own pediatrician who was also my children’s pediatrician always suggested Ginger ale when we were sick. Something I rarely or if at all hear of anymore. Ginger, or ginger ale, relieves colds, flu’s and pain. I use ginger often for its anti inflammatory effects.

I imagine that if I wanted to live through the worse I’d have to find a way by being responsible for myself and my own well being whether it be living off the land, using home remedies, and moving myself even when it hurt that I could survive.

I’ve found that way through the Gohl Program. I hope I can show you the way, too.
Part 1 – https://rsdadvisory.com/2016/10/31/review-gohl-program-part-1/
Part 2 – https://rsdadvisory.com/2016/11/06/review-gohl-program-part-2/
Part 3 – https://rsdadvisory.com/2016/11/08/review-gohl-program-part-3/