Undeniable Breakthrough

I haven’t written for a minute because I’ve been struggling to maintain a sense of worth and ability while at the same time coming out of the closest remission I’ve ever had. I’ve learned to survive without medication management for pain, yet there are times I wish I had even a 10 count as needed a month of Hydrocodone or Tramadol because it’s hard. I’ve learned and used every natural way I know to help myself.

I know that no physician ever pushed opioids on me and I don’t believe that even though I was dismissed and abandoned that it was personal. I understand they were under stress during that same period of time which just happened to be my worse time.

I never used the 10 on the pain scale in all my years of CRPS or the dozen other pain and non pain related disorders. I reserved that number. When I did use it, when it was 10 it didn’t do me any good because I suppose it’s so overused even the medical community thinks it’s a joke if we do.

The joke was on me.

Overwhelming - Breakthrough

I spent the summer in a little kiddie pool in order to do weightless movement that I wasn’t physically strong enough for outside of water. It really helped a lot. I’ve had a treadmill for about 10 years, an old model and still in working order. I’ve had a stationary bike for approximately 10 years, the ab slider my son sent over a few months back, my yoga ball while about 4-5 years old I only started using recently.

It’s just the treadmill and yoga ball I’m using now along with some stretches, mindful about posture, I learned with having MLT.

I could suck it up and have the spinal surgery, or I can suck it up and continue to do all I can for me still without any of that. It’s been a great stress reliever to not be having monthly PMD appointments, to not worry about whether or not medications will be delayed or denied, to not wait for a lumbar or cervical pain block, to not have to rely on someone or something for relief.

I’ve managed also to better regulate my high blood pressure often 180/+ to restore internal involvement, level off drastic inflammation and swelling for the most part. Today is a swollen day, symptoms extra present, dreading getting on the treadmill, but I have to even if for only 20 seconds. I’ve not made it beyond a minute even on better days.

I use the chia seeds for their anti inflammatory, anti oxidant, fiber, and other qualities. My allotment of vitamins have ran extremely low, so I’m out of some, and have a bit of others left. The combination was helping me maintain better. I feel like ka ka right now and so I know they provided a benefit. Since it’s expensive to buy so many different kinds I’ll be replacing it with Prenatal vitamins this upcoming week. The prenatal (nope, not pregnant) provides many supplements in one for a single price. That’s my best option until I can replace my others. I use fresh ginger as well.

The chia seeds I use as a sprinkle on foods and in water, coffee. In liquid the seed becomes a gel.

Later I’ll be doing either Facebook or Periscope live to share these natural ways of helping ourselves. Especially for those whose pain relief analgesics have been reduced or stopped and for those interested either way.

Do things happen for a reason? Or are they random? I’d like to believe it’s all been for a reason and that reason being instead of advocating and raising awareness solely for cures and information about an illness to instead raise it for HRQoL, suicide prevention and our mental health that will always go with it.

That’s the purpose of Stronger Than Pain.  Helping people live not just share with them all the reasons they never will again but rather all the reasons they can, must, and have to.

Through it all came an undeniable breakthrough.

 

Check out

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

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

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

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

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

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

What a ride it’s been!

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

Isolation.

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

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

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

Ozra, Me and Mom - June 30, 2017 resized

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

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

Ozra and Mom resized

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

Progress continues.

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

I love you mom!

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.

0000746_i-love-this-crazy-life_265

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.

 

 

 

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

 

Introducing Stronger Than Pain as an upcoming NPO for Suicide Prevention and Relief

On June 7th 2017, my son announced that together we’ve began the process of becoming a non profit organization. Our mission is suicide prevention and relief, techniques, support and services with mental health awareness at the heart of our reasoning.


After a considerable amount of discussion, I have opted to begin the process of starting a 501(C)(3) Non-Profit Organization with the help of my mother Twinkle Our mission will be suicide prevention and relief along with mental health awareness. We have begun the process of filing paperwork with state and federal. We lose over 40,000 people a year from suicide, over 5,000 of those are Veterans, over 250 are First Responders, and our goal is to help lower that number. Please like our Facebook page StrongerThanPain as we are currently working on building our website. Please email Info@StrongerThanPain.Org for any inquires.


While I chose not to form an NPO for chronic pain and RSD/CRPS over the years because I appreciated being apart of others as a volunteer, I’ve opted to do so with my son.

“Do not go where the path may lead, go instead where there is no path and leave a trail.” ~Ralph Waldo Emerson

Mental health is at the core of every physical ailment and physical decline, illness and disability becomes a hardship to mental stability.

Suicidal ideations, attempted suicide and suicides themselves affect our soldiers, first responders, physicians, chronic pain patients, at risk youth, LGBT-Q, all of us.

We want to help you believe that who you are is enough, what you do is enough, we want you to know that you’re loved and appreciated and we want to help you either stay or become stronger than pain.

We want to assist you in healing your body, mind and spirit. We want to help you overcome not just emotions but obstacles too.

As we build our brand and develop our website, we’d like to invite you to like Stronger Than Pain on Facebook.

Follow us on Twitter

Or Email with any inquiries, suggestions or for interest in joining us at: info@strongerthanpain.org

Every donation counts toward helping us help you, every like is worth just as much.

http://strongerthanpain.org/donatenow/

We’re proceeding through the proper steps and our initial paper work is currently being processed for filing with state and federal agencies to obtain our status.

While our website is currently under construction and we’ve only just begun we want you know that we have.

Stronger Than Pain Logo

In Loving Memory of LaShawn Velasquez A.K.A LaLa

Last week I began sharing photos straight out of Hawaii. My daughter and her local best friend Jessica went to Hawaii to be with LaLa. LaLa lives in Hawaii via her Military wife. In the early morning hours of May 21, 2017 I received a horrifying call from my daughter Kharisma. I don’t think I’ll ever forget the screams into the phone. LaLa was being placed into an ambulance. Soon after she was pronounced deceased even though the impact already took her. I haven’t been able to talk about it in the details everyone wants. None of us can.

Bring LaShawn Home

https://www.gofundme.com/bring-lashawn-home

If you can’t give to it, can you share it please?

I wrote this for her, her family, those who love her and for all the LaLa’s out there.  It wasn’t about me.

Twinkle VanFleet

My name is Suicide. People don’t know me they only know of me. I’ve kept my identity secret because of the shame my name reflects onto others. There are many who share my name and like other names there’s more than one of me. I’m not unique. I’m unique in who I had become. I’m beautiful and I ride or die in a world filled with pain and chaos. I sometimes leave behind the ones I love a little too much for hope in something better, to put my own hurts behind me or to help from somewhere else. Other times the decisions and choices I make leave lifetime scars that I didn’t consider when I…

For this I’m sorry.

My name is Suicide and it wasn’t your fault.

~Twinkle VanFleet
Sunday, May 21, 2017. 8:10 a.m. PST
#Suicide#Awareness

The next day I shared this via YouTube

My Name is Suicide

What should have been nothing but an amazing vacation of a lifetime became something my daughter will never forget seeing. I couldn’t get to my own child in living hell. I can’t imagine another mama not being able to get to hers in death.

When we can teach people that depression, suicidal ideations and attempts shouldn’t be stigmatized as voodoo we might be able to save lives. No one reaches out. Those that do are told they’ll be fine, suck it up. What they really mean is shut up because you embarrass them, shame them, or they are unable to understand fully why you reached out. Some people never will. Other’s may but are not believed. Yet there are others who shout it out as a cry for help or attention. Whatever the reason it becomes another persons fall. Just like stigma in chronic pain, medications, suffering, abuse, misuse, overdose. Judgement! LaLa didn’t overdose.

LaLa fought a chronic pain disease. She wasn’t apart of your community. She was apart of mine.

Hawaii May 16-21. Kharisma came home on the 24th.

You’ll see that my shares on Facebook went from incredible happiness to overwhelming sorrow.

She’s a warrior, too.

LaLa and Twinkle November 18, 2016

 

Photo: LaLa and I 6 months ago. After I completed the Gohl Program the first time. I can still remember what we said to each other.

I rode with my husband to take Kharisma and Jessica to the Airport in San Jose CA on May 16th. And the memories began.  They would not have arrived until the morning of the 17th.

At precisely 6:59 a.m PST. 3:59 a.m Waikiki Hawaii I heard the phone ring out of my sleep and I missed it. I pulled myself up, something was wrong. As I redialed my daughter I began making coffee. No answer. I sent her a text: May 21, 6:32 a.m PST (3:32 a.m Hawaii) –> You called? Everything OK?

Everything wasn’t.

I still don’t want to talk about it. I understand it because I was almost someone of it. There are variations. Planned action and immediate uncertain action. Sometimes we want to die and we want to live at the same time yet there isn’t any way out of that final choice we make. Sometimes there isn’t any coming back. It’s only a finale.

LaLa was the first person my daughter ever told when she became pregnant with our grandson. Kharisma and Rikki have been close to her since they were young teens. Ozra has known her since he was 7. De’Mantai all his life. Ozra and ‘Tai have no memories of not having her part of their lives.

Sulma and LaLa spent much time with us here at our home. Coming over to be with Kharisma and having me part of those amazing times together.

I have a lot of daughter’s, some I never gave birth to.

LaLa and Sulma

#Suicide #StrongerThanPain #Breakthrough

 

 

New Injuries After CRPS

Tonight begins the 3rd day since I re injured my right foot. Any number of reasons could have been the cause. For one, I’ve been somewhat overdoing myself in healing, progress and maintaining pain levels. I refused to miss doing my stretches, or routine, even when I caused myself pain unrelated to any illness or injury. Pain that was a result of not moving or using muscles and bones for too many years. A good pain even if it hurt because no matter it was progress forward. I’ve re injured myself several times over the years and always with the same result in flareups and associated issues. Until the Gohl Program.

Another reason could have been that I’m so tired I was just absent minded to make the step I intended to, another could be I had just gotten off the slider not long before and my back was sore and my knees wobbly. That’s why I left it down in the first place. I wasn’t finished using it. I’m still fairly weak and don’t do big sets at once. I learned my lesson already. Mostly. I mis judged stepping over the bottom metal leg of the machine as I moved toward the doorway and as a result stepped entirely on it with all my weight, left hand grabbing the dresser to keep me from falling, and my foot was still on it. My entire right side was heavy on it.

While both the bottom and top is bruised it’s the bottom that’s worse. When I weight bear the knot on the bottom presses into the ground and the rest of the knot in the center pushes upward through to the top. (insert potty mouth words) but I’m still walking on it.

Normally people with RSD or CRPS wouldn’t use ice. I did. I’m getting rid of my worries and hurts and I can’t let using an ice pack be one of them. Not at this point. I didn’t have any adverse reactions. I did put a dry wash cloth between it and my skin. Voila! No problem.

Bending my toes isn’t happening right now. I’ve manually bent them. You know like how the 5 little piggies went to the market. Anyway, I’m not kidding.

I sometimes miss that quarter beat. In other words, I’ve never been a whole note. Ha!

Of course it’s something that’s a total bummer. Especially after having worked so hard these last 6 months.

It’s going to be most interesting to find out how long it takes to recover and be standing on my toes again.

As it heals from where it is now, I’ll keep working with my upper body and spine. Once the bruising and swelling comes down I’ll know better how much of a setback it may have caused. I do have a soft back support brace on now and it’s only so that my spine doesn’t shift as I’m unable to walk right. I’m minimizing anything that can get in my way of continued healing and anything that can cause the injury to want to get out of line.

I’ve come way too far and fairly fast after 16 years to fall behind now. I can’t stop, I’m obsessed, or maybe possessed. Both?

I helped my husband carry in bags from the car today when he asked for my help. That could go 2 ways. Either why would he even have asked knowing I hurt myself or I could be glad I got myself up to do it even so. I could have said no? I’ll stick with being glad.

I’ll re ice again today. Yep, I’m starting over it a way, but I’m not starting all over from last year. That foot has had tendons and ligaments torn off bones, chip fractures, entrapment’s, surgeries, scars, dings and much more. CRPS, Achilles tendinitis, arthritis, osteo, heel spurs, plantar fasciitis, etc and so forth.

Looking forward to learning how fast I can reverse and heal from another new injury to a CRPS extremity using post MLT routines.
I’m keeping a log and photos. I’ll share any delays or progress.

All I need to know now is who has the voodoo doll?

220px-Poupée_vaudou - image source- wikipedia

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

Masala

Masala

images - masala - image source tritonprinting

Image Source: Tritonprinting

Pity wasn’t her calling,
resilience was.

Certainty wasn’t the future,
overcoming impossibles were.

Hope didn’t always exist,
faith always had.

Giving selflessly was admired,
a gift misunderstood.

Receiving wasn’t an option,
earning it was.

Hardships were just ripples,
meticulousness would wash them away.

Progress had to be for herself,
determination would be solo

A medly of flavorful masala,
unique from the status quo.

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

Advocacy and Awareness: CRPS

sad_facw_behind_a_smiling_face_by_mudabbirali-resized

Image Source: Sad Face Behind Mask by Mudabbirali

I had always maintained a level of balance when raising awareness for Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia. My role was to provide accuracy over inaccuracies. Identifying, evaluating and sharing diagnostic criteria for the diagnosis of CRPS. In addition was the difference between CRPS and CPS (Chronic Pain Syndrome) Chronic Pain Syndrome is a compilation of chronic pain complaints which can include RSD or Causalgia, yet is NOT a CRPS itself.

Complex regional pain syndrome occurs in two types, with similar signs and symptoms, but different causes: Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb.

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury.

Approximately 90 percent of people with Complex Regional Pain Syndrome have Type 1. 

The McGill Pain Questionnaire 

McGill Short Form Pain Questionnaire

McGill Pain Questionnaire (MPQ)

The McGill Pain Index 

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing.
This index is subjective. Subjective means that your pain and symptoms are based solely on what you define them to be. It contains no objective findings to establish any certainty whatsoever.
This index leads you all to believe you have the worse pain disease known to man. Above Cancer. The index describes “Causalgia” which the majority of the people with this syndrome do not have.
Upon reading this many of you will suddenly decide that you have type 2. If you didn’t have type 2 there would be less reason to be incurable and in so much pain.
Do you know how many people over the years who have been diagnosed with RSD suddenly changed their own diagnosis to Causalgia upon learning the difference? Too many.
This is why the research and documented statistics are flawed. This is why the healthcare system fails to help us and instead classifies many of you with Chronic Pain Syndrome or Somatic Symptom Disorder.
According to the respected Dr. Philip Getson “Current estimates suggest that there are between two and ten million patients with this disorder worldwide. It is my personal belief that if you subscribe to the theory that fibromyalgia is in fact not a distinct and separate entity but rather a sub-sect of RSD (as I do), that number can be as much as five times higher.” http://www.drgetson.com/reflex-sympathetic-dystrophy.html
This is because RSD and Fibromyalgia share similar subjective results (trigger points/pressure points) and complaints in addition to some objective shared findings. Overactive nerves instigated by stress. The Fight or flight response.
I can assure you that Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia can be drastically relieved and has the potential to be curable without drugs, sympathetic blocks, modalities or implantable devices.
I can no longer ascribe to the belief that CRPS is without possibility in healing. I’ll not tell people they’ll never get better, and I won’t be sharing the misinformation that advocacy groups expect of me. What I’ll share are the facts that surround this misunderstood syndrome and how we never have to end up disabled, sick, emotional and grieving over something that has a chance early on for an immediate remission, without years of failed treatments and medications and doesn’t ever have to lead to an end of no return.
I think I’ve proven that.
~Twinkle VanFleet, GohlProgram.com