Exhausted

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

Survival Instinct

My first experience with suicide was when I was barely anything more than a toddler. I can still remember it all so vividly. Wandering an empty house, trying to care for my crying baby sister who was still in a crib. My life as a caregiver began that day. My sister and I are 2 and one half years apart in age.

My mother and father were 10 years apart. To be more specific, 9 and 1 half, the same number of years our son is to his oldest sister and the same amount of time between our son and grandson.

My mom inherited 3 children from my dad. She was 19, him nearly 30. She was suddenly the step mother to children between 6 and 12. My sister and I are her only children with my dad. My mom and dad were married 25 years when he died of cancer.

My dad was a very dominant man who used his hands on her at his will. I wasn’t 16 yet when he was first diagnosed with lung cancer. He had a partial lung removal. When I was 22 it returned with a vengeance. By this time I had been married 4 years and had 2 beautiful daughters. That same year I lost my twins. One ectopic the other was lost during the exploratory laparotomy which would make me never be able to have children again. I would give birth to a son months before my 30th birthday. 3 years later I would have the injury that led to CRPS. 1 year before my injury we lost our rental home and it’s entire contents to a fire. My husband and our son was in that fire. My husband not only threw our little son out the window, but managed to, having already been burned make it to the connecting unit and help them and their baby out of it.

I worked on the main avenue and I heard all the sirens. I remember my heart sinking of fear and then I dismissed it as an overactive imagination. 30 minutes or so later an officer came into my work and asked for me personally. He said “Ma’am you need to come with me now”. I asked “Why?”. He responded “your home is ablaze”. “Where’s my husband, where’s my baby? Tell me their alive. He said “I don’t know”.

I dropped to my knees because I knew I left them sleeping when I went to work. When we arrived 2 blocks were blocked off and I could see the flames raging out what had been my kitchen window into the street. He told me to stay in his car but I couldn’t. I ran toward my house. There were so many people in the streets, fire, rescue, police, even the American Red Cross was on the scene before I was and I don’t think that officer could have gotten me there any quicker. I ran away from him and into chaos. Eventually I seen my husband near an ambulance. His fingers were burned so badly that they looked like freddy krugar knives. Part of his ear was melted off, all facial hair gone. His chest was burned and his feet were bare. His face was burned and blistering, he had severe smoke inhalation. My baby was already en route to the hospital. I’ll never be able to describe that emotion. My husband was taken after I got to him. My son went out the window in a diaper, my husband was in his underwear.

The red cross put us up in a motel after assessing all that it was. It was all gone. We still had our jobs. My husband never took disability for that event instead he used his accumulated sick leave and vacation. I walked to work for weeks. Between the fire and the fear I reduced my weekly work hours to be with my children and as a result when I became injured it would alter compensation for the next chapters of my life. While my WC disability rating is above 70 percent I would go on to received $76.04 a month. Less than the minimum under the state. I would receive only “wages” instead. Had I not lessened my work hours the quarter before, my lifetime stipend would have been considerably more.

My career prior to this job was high management. Restaurant Management. I took that job at the time so that I could be farmer’s little duck without any title or responsibility other than my own cashier position. I was the manager on duty the night of my injury. I wasn’t a manager. What I was is someone often used for another persons gain. Someone who would give, and then give some more. Sort of like the last 16 years of CRPS as well.

Within a couple of years of that first suicide experience I was molested for the first time. That would continue for another 2 years at least and because I was the oldest of my sister and I, I would end up taking the brunt of it for her.

I learned really young to hold it. I learned so well that by the time unrelenting physical pain came I couldn’t show it enough. Not out in the world. Only online. Only in words.

Facebook is one of my flaws because it becomes too easy to say too much even if the intention is well.

My birth daddy, no matter how hard would lead me into never being able to speak up for myself. He didn’t allow me to complain or not feel well. Just like my mama. My mama never had a voice, couldn’t laugh or play. She couldn’t have friends and she couldn’t want to be around her own family. Even when she went to real-estate school she was accused of doing something wrong. I would end up submissive and someone who could only give, but never receive.  That man did me right even so. I would be the one to close his eyes when he died. I would be the one to pry his hands off the hospital bed railing that he must have grabbed onto as he was taking his last breaths. I would be the one to wake my mom when it was over. My dad died in the home of my husband and I are our 2 little daughters.

I would end up someone who would give everything above herself. I would end up being someone who could hold intense pain so well that not even a professional could recognize it without diagnostic proof enough to believe.

I would end up losing another child after the same injury that led to RSD/CRPS, one I never thought could be possible because I was told it wasn’t possible. I would lose that baby because of consequences directly related to it. I have finally let that go to the extent that I carried it just this year.

December of 2012 my husband had a quadruple bypass. He had his first heart attack at 37. 2 stents were placed in his heart. He had another heart attack within a couple of years. He was diagnosed with Diabetes during the first. I never left the hospital and because I couldn’t drive, I slept outside in the van in a really hard winter.

Less than a year before that our son had a Traumatic Brain Injury. He was intubated, and in a coma. He sustained a severe trauma to his frontal lobe in addition to other areas of his brain. I never left the hospital for that 11 days either. When he was 17 and his back was being evaluated due to the head injury we learned from Shriners Hospital that he was born with birth defects of his spine. I’m grateful that the doctor never told me he was in trauma as I gave birth to him because the cord was wrapped entirely around his neck and his body. The doctor literally spun him out of me. I gave birth to Ozra entirely natural. Had I known, my body may have reacted in fear and inadvertently caused his death.

In 2013, our oldest daughter would be diagnosed with a rare liver disease called EHE. She’s been on the liver transplant list. I wanted to be a living donor for her but because I had part of my liver removed just months before, and because I also have lesions on my liver in other areas, and because the vessels in mine are adverse, I haven’t been able to go forward. If I die, my child will have my liver. It’s still good enough for someone who needs one. It’s not good enough while I’m living.

My daughter Rikki has served in the U.S. Army. She would have been deployed to Afghanistan with a rifle in her hands. A military training session would bring her back home. She’s never sought disability compensation. The incident to be clear was not her fault she was just someone receiving the worse of it.

Our children are 29, 28 and 20.

I would be fine through it all. I would fake it to make it. I would compartmentalize all of the before in order to survive CRPS and coexisting diagnosis’ and developments. . Until physical pain reached a level I couldn’t breathe through, think through, or feel anything else through. I had fell into the CDC Guidelines being created and implemented, the physicians who became afraid to prescribe or consider us as anything more than the less than that we became.  I would be fired from pain management of 12 years 6 days after that first suicide attempt.

The first time I attempted suicide on Valentine’s Day of 2016 I was 11 days off medications. Medications I had appealed, won, yet never received. I wanted to be happy I survived. I wasn’t. The second time April 19th of 2016, I’ll never know how I survived that one. The 3rd time, January of 2017, I understood after that I’m not obligated to anyone. I’m not responsible for anyone other than mine. I don’t owe anyone anything that I didn’t return mutually already.

I know what I’m indebted to and it sure isn’t anyone here.

I love my mama who I’ve only seen but a few times in 20 years, and I love both of my fathers equally because one gave me my first 22 years of life and the other has been for this rest of it. But most of all my dad now has given my mom everything my dad couldn’t give her. A life without being hit, belittled, or scorned. My dad suffered from his own mental health dilemma’s because he was cheated on in his first marriage. He believed my mom wouldn’t ever be faithful. She was and she is.

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I would end up someone who wouldn’t take any kind of ka ka from anyone, anymore.

Even at my weakest points, I’ll always survive you.

 

 

 

Family and Blessings

My mom and dad arrived in Sacramento June 28th and headed to Southern California on July 1st. Today I’ll see them once more before they leave back to Quincy and then drive back to Georgia.

They came so that my dad could see his brother and make funeral arrangements for him due to inoperable end stage cancer. My dad also has cancer and my mom has a pacemaker keeping her heart beating.

They took my sister and her friend to Disneyland this last week as she had never been there before. My little sister was born my niece, but my parents have raised her since she was a baby and so I acknowledge her as my sister instead.

thankful- grateful- blessed

This visit was the first time in all my 16 years that I was able to be with them without taking naps, or laying down. Without being overwhelmed by pain or in a mindset of pain. I even swam a few laps for the first time in all those years. My arms and legs did fairly well, my lower spine ended up flaring a little afterward and that might be because of the prior week and having started more aggressive movements and stretches for my back in my little pool.

I might not be able to do the things I still have wishes for, but I know that everything I’m doing is keeping my blood flowing better throughout my extremities, and I know that each stretch is keeping my flesh circulating with less tissue restriction and edema and therefore keeping pain from reaching an uncontrollable point.

For certain my orthotics also make an incredible difference because when I don’t wear them my entire physical alignment is disturbed and I end up leaning forward just to be up after standing. Having flat feet never did me any justice.

My family will be arriving back in Sacramento in a couple of hours and then I’ll be spending the remainder of the day with them before saying G’bye for now this evening.

Heading out to my kiddie pool to get an hour in before meeting them.

Love ‘n light.

 

 

 

Sunshine and Nature

I’ve been spending a lot of time outside in the sun in a little kiddie pool soaking up sunshine and nature. I’ve been using my pool to my advantage by doing weightless water movements in order to continue strengthening overall weakness in my body and to keep pain as minimal as I can.

I’m using chia seeds as a holistic and natural approach to pain relief. It’s anti-inflammatory and antioxidant properties have been helpful. I take Magnesium daily also.

I’d cut my internet time down considerably compared to the last several years in order to just take care of me for a little while. I wanted to share love and laugh instead of post only about pain and while it still included it I meant to keep it less than. I wanted to heal myself the best that I could with what I endure because I still don’t have pain management, use any form of pain medication, or receive any other kind of treatments or therapy related to pain.

“Sometimes good things fall apart so better things can fall together.” ~Marilyn Monroe

I wanted to share progress in accomplishments since receiving MLT and from continuing to utilize the techniques that I had learned at the Gohl Program. I wanted for people to know I understood their pain because my own physical problems have been many. I wanted you to know there’s possibility in what we end up believing is impossible.

I didn’t want to feel responsible for things I either couldn’t or didn’t provide other people these last few months or more.

As of last night my Facebook is deactivated again. For how long I’m not certain. Maybe a couple of days, maybe longer. My Stronger Than Pain page should have shifted to my son as the sole administrator.

It’s time to head outside for my daily dose of sunshine and nature.

Stronger Than Pain Cover

 

MLT Update

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.

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Pain

 

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.

© 2017 Twinkle VanFleet. All Rights Reserved. Unauthorized duplication prohibited. Copyright Laws and Regulations of the United States http://www.copyright.gov/title17/

Sharing permitted without alteration.

wwgrctwvf_rsdadvisory

Making and Breaking Habits

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
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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