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About Me

About Me

I own a couple of conditions known as arachnoiditis, RSD (Reflex Sympathetic Dystrophy) also known as CRPS (Chronic Regional Pain Syndrome), and I own all that comes with those as well. My journey began in October of 2009, when a spinal cord injury was inflicted upon me from medical harm and negligence in October of 2009. I was not sedated in the least, not even with a valium, as the needle from a lumbar puncture was driven into my cauda equina puncturing my spinal nerves and ripping the dura sac by the hand of the doctor performing the procedure without an assistant, who got off balance. I had a very dear friend in the room with me holding my hands as this happened. My life was forever changed.

Throughout my journey, I have suffered torture, hell. I have suffered tortuous levels of pain that have left me in emergency room countless times, and numerous one and two week hospital admissions. I’m not sure at the time of writing this how many times I had learn how to walk again, constantly retraining my brain and pushing myself along the way. However, I did keep copies of my medical records, and I documented my medical journey since the day it began. I just recently began to review my personal documentation and will be publishing the whole story in an upcoming book. I will be sharing bits and pieces of my journey on my blog, including my challenges, treatment program, and random articles sharing knowledge, information, and inspiration.

I am often labeled as a poster child for medical malpractice/negligence and arachnoiditis, an advocate for patients and caregivers for those who suffer from chronic pain, appeared on the Dr. Oz show, and have been a guest speaker on internet radio. Throughout my journey, I have been blessed. I have also learned how strong and powerful the human body can be, and that our most valuable weapon in this battle is our brain. I have learned how to improvise, adapt, and overcome. I have learned how to own my condition, so that it no longer owns me. I have spent much time throughout my journey researching, studying the chemical, clinical, pharmacokinetic data, interactions and side effects of various medications. I have studied organic chemistry, and what I often refer to as primal medications. I’m not a surface person. I’m a core person. My brain is highly analytical. So, when this all happened to me, I had to go straight to the core.

I am currently an advocate representing arachnoiditis, RSD/CRPS, Spinal Cord Injury, and many other chronic pain conditions. I am an administrator for a global Arachnoiditis Support Group. I am also a Delegate representing International Pain Foundation. I achieved my certification as Usui Reiki Master Practitioner in October of 2015. I am also an advocate for animal cruelty and neglect. I am currently starting over from the bottom to establish Primal K9 Academy, and the Stand a Chance Foundation. I will be publishing information about both soon.

Oh!!! One more thing real quick. I will also publishing articles regarding animals, animal and human behavior/psychology, and from time to time, yeah … I will be publishing articles regarding other various topics that need to be addressed.

A bit more about me-

I began interacting with dogs and horses at a very young age. I credit my early learning of animals to my beloved Great Grandfather, Ben Hale, who passed away at the age of 101 years old. I also give credit to life, which has embedded me with an enormous amount of knowledge obtained through experience.

So many times it has been stated or published, “Working with animals just comes natural to her. She truly has a gift.” I would be in wrong in not acknowledging the gifts I have been blessed with throughout my life. We all have gifts, and we should share them. I give the credit of gifts to our Creator.

I owned and operated K-9 Kampus based out of Arkansas until I became permanently disabled from the spinal cord injury from the botched lumbar puncture that left me with adhesive arachnoiditis, RSD/CRPS, and all that comes with it. Throughout my career, I have been in the media and newspaper articles numerous times.

I began my profession in the equine and K9 industry in 1995 and since then made accomplishments in my career through furthered education, and exposure to various breeds, environments, operations and situations. I have trained and worked with numerous breeds of the horse to include the American Quarter Horse, American Paint Horse, Andalusian, Appaloosa, Arabian, Missouri Fox Trotter, Mustang, Percheron, Peruvian Paso, Paso Fino, Thoroughbred, and Standardbred. The breeds of dogs I have worked with through my years are countless.

In 1997, I began going to schools to work with children in honor of my Grandfather, through the Ben Hale Forget Me Not Foundation, providing Animal Assisted Education and Conservation Programs to schools in Arkansas. The first school I presented these programs to was Vilonia Elementary located in Arkansas. In 2002, I placed Barbie, a Golden Retriever, in the first ALC classroom at Henderson Middle School in the Little Rock School District under Little Rock Mayor Jim Daily. I created programs approved by the school board that were presented by me, which they were given tests on, and graded upon by the teacher. Barbie attended school every day for a whole semester. The clinical results documented were incredible.

I trained my first Assistance Dog in 1998 for a Disabled Veteran in Nashville Tn.  Elka, a German Shepherd, was trained to assist the blind Veteran on his walks through Nashville and was conditioned to take him home to his front door. This is also when I began my career in the field of K9 Personal and Family Protection training and provided my dog overseas which went to an American Embassy in Indonesia, who was a German Shepherd named Joseph.

I began training tracking and area search dogs in 1999 (not to confused with competition tracking on an open field) and began being hired out by private individuals to teach their family dog to be able to search-track and keep up with their children, and loved ones who suffered dementia. Since then I have trained and worked with Search and Rescue/Recovery Handler Teams and various organizations and departments across the United States and have assisted with Missing and Lost Person cases heading up search operations for Law Enforcement and Private Individuals. In 2003, I began training horses for search and rescue and human remains detection.

K-9 Kampus merged with Quality K9 Concepts in February of 2008 as a partner kennel in the south. Prior to becoming permanently disabled, I was one of QK9C’s Master Trainers that also assisted in professional working dog handler courses. I also served as a Judge and Master Trainer for the American Patrol and Protection Dog Association.

I have served as an Animal Cruelty Investigator for the state of Arkansas, and an accomplished Animal Care Behaviorist and Specialist. I possess a unique understanding of animal behavior that stems from several years of exposure to different situations and environments. I have an innate sense of handling, reconditioning, and providing rehabilitation for the dogs that no one thinks can be helped. Through the years I have worked with foster and rescue groups from all over, assisting them with problem solving issues, and by providing jobs for dogs that needed them. I know and understand the criteria to be met in order for a dog to be successful in the chosen to be conditioned and trained in. I have been contacted numerous times since my journey began that left me disabled and unable to work, by professional handlers, individuals, and other instructor/trainers for my analytical mind, and my ability to process through a crisis or problem situation which requires immediate attention. I was able to coordinate search operations in Montgomery County, Arkansas for a lost person and safely locate him while working from my computer at home. For that, I am truly grateful. It’s kept me in the game so to speak. In 2011, I was hired by Michelle Malkin (FOX News) to coordinate and lead search operations to clear Discovery State Park in Washington regarding Missing Persons Case Marizela Perez. I could not have pulled this off without the professional assistance from Michael Lueck (Search One Rescue Team), the Handler/K9 Teams we deployed, and Steven and Rebecca Yerger. Unfortunately, I have also had to walk away from numerous clientele and contracts during this time. A time when I should have been at the peak of my career.

If you would like to know more about Marizela Perez, please click the following link https://findmarizela.com/

You can also subscribe to my YouTube Channel and view my videos under my playlist titled – My Medical Journey. If you do subscribe, please be sure to follow me from my home page instead of from a video as some videos were uploaded from other accounts. The following link will take you to my home page on YouTube. https://www.youtube.com/channel/UCHmjUfgDXDo3LRqb26jJKXA

This link will take you to my YouTube playlist.

https://www.youtube.com/playlist?list=PLDmYewFhClvqYx-oO9IvbGyH7jL87xLkI

“My mission in life is to continue to strive each day with my new 100%, to continue to share my journey, knowledge and information that I have learned along the way in hope that I may empower, improve, and save the lives of others. To be the change in the world I want to see. To leave a legacy that can be honored and respected in hopes that it will be always be remembered and paid forward long after I’m gone.” ~ Melanie Lamb

 

Professional Career Development Institute

Animal Care Specialist

EOTA (Emergency Operations Training Academy)

Crime Scene Issues, Hazards, Law Enforcement Interface

Explosive Threat Awareness

Principles of Navigation

Vehicle Bomb Search Methods

Training Practices and Instructor Development

University of Kentucky

Pediatric Terrorism Awareness

Bioterrorism Awareness

Agroterroism Awareness

U.S Department of Homeland Security

IS-00100 Incident Command System

IS-00700 NIMS

IS-00800 NRP

IS-00139 Exercise Design

IS-00242 Effective Communication

IS-00241 Decision Making and Problem Solving

IS-00240 Leadership and Influence

IS-00010 Awareness in Disaster, Awareness and Preparedness

IS- 00244 Developing and Managing Volunteers

IS-00235 Emergency Planning

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I am …

I am Melanie Lamb.

The story of my life is a beautiful, love filled, magnificent journey that has encompassed me with breathtaking and mind blowing experiences. My life has been significantly blessed from the beginning with time shared among most beautiful, compassionate, intellectual souls who have greatly influenced my life and molded me into the woman I am today. Sure, there were times spent growin’ up the hard way. I suffered the consequences from making poor decisions, and also survived trials and tribulations that were anything but self-inflicted.

Throughout my life I have raised my hands, fallen in and out of love, and laid down on a bed of roses as thoughts of being a little run away on a mystery train traveled through my mind allowing me to escape bad medicine and medical harm which attempted to consume me.

In October of 2009, medical harm inflicted me with inconceivable acts of barbaric torture that compromised every system within my body. In the blink of an eye my life was forever changed, and left upside down. Unfortunately, my journey had only just begun. In 2013, I endured more medical harm that left me fighting for my life. A battle almost lost. During this time I experienced multiple near death experiences. It was a miracle I survived. Physicians would ask “why aren’t you dead?” Others would simply look at me say, “Clearly, you’re not alone.” Over the course of four years I became known as a medical harm poster child. I am eternally grateful for the miracles gifted to me and for those who took time to love me back to life. PTSD consumed me. Nightmares reliving the trauma haunted me. Countless moments spent drowning in my tears while grieving the loss of who I once was, petrified of what the future held for me. I was reminded numerous times that life for me was no longer about quantity, but quality. In 2012, it was estimated that the medical harm I endured had robbed me of approximately 12 years of my life. That number increased after 2013. I refused to accept this then, and I refuse to accept this now. After all, it’s my life. Since 2009, I have been dedicated to researching and experimenting while fighting to achieve a quality of life. A life that didn’t involve being confined to my bed, hospital room, or a wheelchair. A life that was not dependent upon synthetic pharmaceuticals with horrific side effects that prevented me from functioning, and were destroying my organs in the process. Dyin’ ain’t much of a livin’.

Medical harm left me with Arachnoiditis and RSD. RSD is also known as Reflex Sympathetic Dystrophy which is the most painful medical condition known in the history of mankind. It is often diagnosed as a secondary condition to those who live with Arachnoiditis. One isn’t simply diagnosed with these two conditions. The list can be quite extensive. Those who live with these conditions often battle with fear. Fear of the next horrific flare. Fear of not knowing when or where the next stabbing sensation will occur. Fear of the burning sensation that feels as if we have been covered in lava. Fear that compromises our internal compass creating chaos and havoc within every fiber of our being. During my darkest and most painful moments, I have cried out to God begging Him to lay His hands on me and make it stop. I have begged and pleaded asking Him to take me out of this world if that’s what it takes. The flares experienced are relentless, torturous, and leave us in desperate need of something for the pain. Blood pressure and heart rate rapidly accelerate reaching dangerous levels that can cause a heart attack, stroke, or even death. When you’re falling into the fire pits of Arachnoiditis and RSD, it becomes difficult to keep the faith, and you question if you’re strong enough to go the distance.

Enter stability, support structure, and positive environments.

Stability, support structure, and positive environments are essential in empowering and equipping those who live with Arachnoiditis, RSD, and other chronic pain conditions with the necessary tools to win the battles they will unquestionably encounter. Family, friends, and caregivers also need encouragement, guidance, and support. It is not uncommon for them to become overwhelmed and feel helpless while watching their loved one suffer such horrific levels of pain. Sadly, this often leads to a whole lotta leavin going on.

Enter isolation, increased depression and probability of suicidal risk. All of which are greatly misunderstood.

Our brain is the most powerful weapon any of us have in this battle. How one chooses to nourish and engage their brain will determine failures, progress, and ultimately victories. Retraining the mind and body has been one of the most difficult challenges throughout my journey with medical harm. I have learned to fall with grace, and rise with confidence. I continue to remind myself daily that victories are only accomplished through consistency, desire, and dedication. The only requirement is a foundation built upon bravery, courage, and tenacity. If I want to achieve, I must be fierce.

Our nerves rely on memory to function properly. Retraining our brain is mandatory for the successful reprogramming of damaged nerves and significantly benefits individuals who have endured mental or physical trauma. Physical activity and exercise is crucial, and should be implemented into daily routine as tolerated. Remaining stagnant and inactive will greatly affect your health and hinder the healing process. Risk factors include increased atrophy, depression, fatigue, and numerous other conditions that may lead to serious complications.

Conditioning of the mind will strengthen the body. Conditioning of the body will strengthen the mind.  Successful conditioning establishes a cohesive relationship between mind and body creating a balance that is unbreakable. This unbreakable balance will equip you with the mindset to own your condition and master the ability to improvise, adapt, and overcome.

Train your brain the way you want to perform

You will perform the way you train your brain

IMPROVISE ADAPT OVERCOME

What about now?

My life continues to bless me with a journey granting me the opportunity to empower, improve, and save lives through the Stand a Chance Foundation while continuing to serve, support, and represent the International Pain Foundation as a Delegate, and administrator in a global support group. I have been researching, experimenting, and documenting my journey while living my own dissertation for almost eight years now.

Medical harm is currently ranked as the third leading cause of death in the United States of America. Statistically, I feel it ranks higher. The atrocities suffered at the hands of medical harm are appalling and unacceptable. I continue to be contacted daily by patients and their families seeking encouragement, guidance, and hope. I fear this will only continue to increase due the actions that have been implemented by the CDC. This is another form of medical harm that we need to stand against. Patients all over this country are having their prescription medications abruptly come to a halt leaving them to suffer immediate withdrawals putting their lives at risk. I refuse to be stagnant while turning a blind eye to this situation. Those who are able, and do nothing – are condoning the harm inflicted.

I am currently working on two analytical, awakening, and mind-blowing documentary projects that will be produced in honor of those who have suffered medical harm, and those who live with arachnoiditis. This requires me to bounce from state to state, and hopefully to other countries as well to collect data and film patients, their families and caregivers, and specialists. My goal is to provide awareness and education on a global level presenting undeniable facts and personal stories through these documentary projects. My hope is to prevent others from suffering the atrocities that are tragically impacting innocent lives, resulting in a global statistical decrease pertaining to medical harm, debilitating and life threatening chronic pain conditions, illnesses, and suicide.

Cures become inevitable through prevention. Prevention is achieved through awareness and education.

I am Melanie Lamb.

I am an avid fan of Bon Jovi, and have been the majority of my life. Anyone who knows me, knows this.

I felt it only appropriate as a dedicated advocate that I should compose an article regarding medical harm and arachnoiditis including titles from Bon Jovi’s songs. As I began to ponder this idea, I realized I could compose a series of articles pertaining to medical harm, arachnoiditis, (and all that comes with it) using his songs as the title for each individual article.

I believe all life is beautiful, and that time is the most valuable ambient influence any of us have. We should savor every moment, and touch the lives of others with every opportunity we are granted.  The time is now to become undivided as an army of one, thick as thieves, and be the change in the world that is so desperately need.

I’m livin on a prayer, making a memory and leaving a heart print with every opportunity that arises. Thankful for those who said I’ll be there for you, and those who never say goodbye. Reflecting on the story of my life and what’s left of me to give this world. Wondering where we will be in the next 100 years.

Have a nice day,

The Fighter

 

If you would like to support this journey with a financial contribution please use the links below.

https://www.youcaring.com/stand-a-chance-foundation-651853#goto-fundraiser-details

www.paypal.me/MelanieLamb

Arachnoiditis Awareness Month

In 2015, Barby Ingle, President of the International Pain Foundation, contacted me regarding us leading the way for an Arachnoiditis Awareness Month. She asked me to choose a month. I immediately began to put careful thought into each season, what each month represented, as well as how our bodies respond to the weather that comes with the seasons. I also thought of the seasons of our lives. The seasons that come with living with Arachnoiditis. I knew the winter months were out. None of us would feel like bringing forth much awareness and education during the winter months because we spend most of our winter fighting to stay warm. Being cold not only causes us tremendous pain, but also causes vasospasms. Spring months bring forth rain, and keep many confined to the indoors as well. Fall months aren’t too terribly bad. But, summer … with summer comes Independence month. This is one thing we all share. We want to gain our independence back on whatever level we can. So, I chose the month of July to represent us all. My wish is that each of you who live with this condition will find empowerment to achieve, adapt, improvise, and overcome. My wish is that you each gain independence through learning to own  your condition.

At the time of this publication, Arachnoiditis Awareness Month is coming to an end. This has been a most productive month for us all. Together, we have come so far with our advocacy efforts. The lives of caregivers, families, patients, and physicians across the globe are being educated, empowered, and saved. We must not cease. As far as we have come, we have much more left to accomplish.

Every single day I am contacted by patients themselves, because they have been left on their own to cope with some of the most debilitating, most painful medical conditions known in the history of mankind. They face daily battles on levels that are life altering on every molecular aspect of their mental and physical well-being. Many are also being abandoned by their treating physicians.
I am also contacted frequently by family, friends, and caregivers of patients who suffer from Arachnoiditis, and other chronic illness and pain conditions seeking help. Seeking guidance and knowledge on ways to help them. THIS – makes my heart runneth over. It is never an easy task to watch a loved one suffer tortuous level of pain, feeling helpless. Yet, they put their armor on daily and do what they can to help. They do this understanding their level of helplessness doesn’t come close to comparing to the level of suffering their loved is enduring. Several who have contacted me have sold their homes, vehicles, and even taken on two jobs to help support their loved one. Never complaining, and certainly never making their loved one feel like a burden or guilty. The sacrifice they make is done so unselfishly.

I’m not the only one who is contacted daily. All of our administrators leading the support groups are contacted as well. We are adding new members every single day. You know what? I wasn’t always an administrator. I wasn’t always an advocate. I was a patient. I quickly became labeled as the Arachnoiditis and Medical Harm Poster Child. These administrators and their allies saved my life. In everything I do, I pay their unselfish and loving acts of kindness forward. Each and every day I wake up and ask God to show me how I can be a vessel to pay it forward. The International Pain Foundation has been of tremendous help in sharing awareness and education, and is also contacted by patients and caregivers for guidance. Together, we are all making a positive difference in the lives of not only Arachnoiditis patients, but chronic illness and pain patients across the globe as a whole.

I would like share with the readers of this publication in detailed depth as to what these patients experience.

Imagine for a moment waking up one day to find your life has just changed on every level imaginable. You are no longer able to work. Meaning, you are no longer able to provide for yourself the way you once were able to. Imagine becoming completely dependent upon others to care and provide for you. Not everyone has those people in their lives that would do this without making demands, or dictating what you deserve or don’t deserve. Imagine losing your independence on every level of your life.

Imagine for a moment if you will, that you are burning. I’m not talking about pulled or torn muscle burn, although we do experience that. We go through random spans of time where our muscles may do that in our sleep. I’m talking about the level of burning that would come from your veins being replaced with lighter fluid, and then ignited. I’m talking about the level of burning that would come from placing your hand, foot, or affected area in acid or lava. Only not being able to remove it. Imagine being stabbed by a knife or ice pick at random, without warning. Imagine an electrical war going on inside every fiber of your being, as if you had been shot with a Taser gun. Imagine the sensation of being covered in areas with road rash embedded with gravel. Imagine the air, or a slight breeze either feeling like flames, or ice, leaving you frost bitten. Imagine not being able to touch certain metals like stainless steel, grass with your bare feet, or a tile floor. Imagine having to go days without emerging in water to relax in a bath because the water burns you. Not being able to shower because the water either burns your skin, or the water from the nozzle hitting your skin feels like needles. Imagine your feet profusely sweating and swelling until the skin comes in layers and leaves them bleeding. Imagine the sensation of being attacked by hundreds of fire ants. Imagine never knowing what you can wear from day to day, because textures cause you pain. Imagine never knowing if what you could do one day, you were unable to the next.

Now, imagine this. You are left alone and isolated the majority of the time. Phone call conversations cease, either because they quit calling, or you quit answering. Family members disappear. Friends go on with their lives, as they should. Spouses leave. Human interaction with body language, tones and touch- that all but disappears.

Many who suffer from Arachnoiditis, and other chronic pain conditions to include RSD/CRPS spend more time with their treating physicians than with family and friends. The majority are either on the wrong medications all together, under medicated, or over medicated. Not every chronic pain patient shares the same chemical breakdown or response, nor they suffer the same the same symptoms. Yet the majority seem to be put through the same cycle and rotation of medications like clockwork, trying to find what works. Regardless, they are taking the only immediate solution that might prevent them from cutting off a limb, or committing suicide. They are taking physically dependent mind altering, organ destroying medications that produce side effects, which leads to more medications. They endure this looking for relief, to somehow survive. As time goes by, the body adapts to the medications and they are then prescribed a higher dosage, or switched to another medication. This cycle seems to never ending, but when it does end, it usually ends in physicians refusing to continue to treat the patient because they have already implanted them with numerous devices making their huge kickbacks which have resulted in making the patient worse than before. Or, it ends in suicide.

Imagine being medicated on some of the highest levels of opioid and hallucinogenic medications, and you are expected to function as normal and handle all negative and stressful situations as a pro. Yet, because this is simply not possible, when you do finally have a breakdown, you are left to handle that on your own as well because heaven forbid those who should actually be there, show up. Most times, those who experience this, survive because of those in their support groups across the globe. Sad as this is, this is truth. How any human being could abandon another who is fighting with all of their might to live with all of this is absolutely beyond me. How any human being could judge another who lives with this condition for not being able to accomplish or perform one day, what they were able to do the day prior is beyond my grasp of comprehension. One thing is for certain. When your life is altered due to any chronic condition, you find out exactly who your family and friends are.

As I bring this article to a close, I would like to express to every sufferer of Arachnoiditis, as well as other chronic illness and pain sufferers- you are not alone. You are never alone. Reach out to someone. If you don’t have anyone in the physical flesh close to you to reach out to, please find a support group online. If you suffer from Arachnoiditis, and would like to join a support I recommend the groups the named ARACHNOIDITIS (all CAPS) or Arachnoiditis, Together We Fight.

If you like to learn more about Arachnoiditis, you will find the following links helpful.

http://pantopaquemyodil.wordpress.com

http://pantopaque.wordpress.com

http://www.cofwa.org/arachnoiditis.htm

http://www.lifewitharachnoiditis.com/organizations.html

https://artforarachnoiditis.org/

www.internationalpain.org

My Treatment Program

My Treatment Program

Throughout my journey I have been contacted by hundreds wanting to know about my treatment program and how I have been able to accomplish being RX pain medication free, most days. Anyone who personally knows me, will tell you that I have always looked at things from a primal aspect, and my mind is highly analytical. I am not a surface person. My journey has led me down a path of being put on so many mind altering, organ destroying pain medications, that not only caused countless side effects, but almost took my life. More than once. I knew there had to be a better way. I wanted my brain back. But, I also knew that in order for me to achieve this, I would also have to research and experiment primal ways of treating my conditions. I’ve learned so much more than I ever imagined regarding the human anatomy on an anatomical, psychological, physiological, level. It was only natural for me to work my way through the core of every aspect, battle, complication presented to me.

Before this happened to me, my training and a large portion of my life consisted of being an animal behavior/care specialist, Handler/K9 Instructor, Equine/K9 trainer, and working with children of all ages through various programs. I spent a portion of my life as an Animal Cruelty and Neglect Investigator. I also mentored and served under veterinarians as a young adult. By the age of 26, I was overseeing animal care/behavior, kennel management, and the training/whelping program for a farm who provided German shepherds across the globe. This was not a small farm. There were days I served up to a hundred German shepherds. By the age of 29, I went to work for another Kennel Service Provider and remained there while I also continued to train horses until I began to contract out and work for myself. I furthered my education along the way, and was also blessed with an abundance of experiences. In time, I specialized in detection, area search/tracking, problem solving, patrol/protection, missing/lost person search operation protocols, pack structure and scent and scent theory to name a few.

When I was contacted for lost/missing persons search operations, I would be called in for not only my ability to deploy with a K9 (my Ms. Tish), or to oversee the handler/k9 deployment operation, but for my ability to operate at command levels with Incident Command and Search Command on every level of the operation. I can only recall one operation that was a flood disaster incident when my only responsibility was to deploy with Tish and clear areas. Tish was known for many things, but she was also known for her exceptional ability, commitment, and dedication to work through any cadaver scenario thrown at her.

You might be asking yourself, why I am sharing this here instead of getting straight to the treatment protocol. Enter, the Mental Battle, Part One. You see, the day that needle went through my spinal cord, I lost everything. Including who I previously was. I was no longer able to be that person. This was not self-inflicted. Another human being was negligent, and drove a needle through the cauda equina section of my spinal cord. To top it off, I wasn’t sedated in the least. This was torture. I was mentally and physically traumatized. As many of you reading this already know, my medical journey didn’t stop with this procedure. I remember the day I took down my dog wall, and put up my training gear. I could no longer even look at photos, or anything that reminded me of who I no longer was able to be. That choice was robbed from me. I also remember the day I put my dog wall back up, and brought my training gear out once again. A neighbor, who was also a part time care giver to me, came over with her children to help me. Some might think this is no big deal, and they would be wrong. It was a huge deal.

Since my journey began with spinal cord injury, I have been determined to find my new 100 percent. Not only did this mean finding it, it meant accepting it. This also meant accepting that what was my 100 percent one day, may not be so on the next day. This meant I would need to master the skillset of adapting and improvising in order to overcome. By overcoming, I achieved and I celebrated. Have I been knocked right back down on my buttocks along the way? Many times.

RSD/CRPS is the most painful condition known in the history of mankind. It is also labeled by the medical industry as hell and Suicide Disease. If you’re reading this, and you don’t suffer with this condition, please take a moment, pause, and think about that last sentence.

If hell were a clinical medical condition, it might look something like reflex sympathetic dystrophy or RSD. Dr. Nathan Rudin, John Hopkins University

Arachnoiditis and RSD/CRPS are each relentless and traumatizing conditions. Imagine for a moment if you will, that you are burning. I’m not talking about pulled or torn muscle burn, although we do experience that. We go through random spans of time where our muscles may do that in our sleep. I’m talking about the level of burning that would come from your veins being replaced with lighter fluid, and then ignited. I’m talking about the level of burning that would come from placing your hand, foot, or affected area in acid or lava. Only not being able to remove it. Imagine being stabbed by a knife or ice pick at random, without warning. Imagine an electrical war going on inside every fiber of your being, as if you had been shot with a Taser gun. Imagine the sensation of being covered in areas with road rash embedded with gravel. Imagine the air, or a slight breeze either feeling like flames, or ice, leaving you frost bitten. Imagine not being able to touch certain metals like stainless steel, grass with your bare feet, or a tile floor. Imagine having to go days without emerging in water to relax in a bath because the water burns you. Not being able to shower because the water either burns your skin, or the water from the nozzle hitting your skin feels like needles. Imagine your feet profusely sweating and swelling until the skin comes in layers and leaves them bleeding. Imagine the sensation of being attacked by hundreds of fire ants. Imagine never knowing what you can wear from day to day, because textures cause you pain. Imagine never knowing if what you could do one day, you were unable to the next.

Now, imagine this. You are left alone and isolated the majority of the time. Phone call conversations cease, either because they quit calling, or you quit answering. Family members disappear. Friends go on with their lives, as they should. But, the company, the human interaction with body language, tones and touch- that all but disappears.

Many who suffer from Arachnoiditis, RSD/CRPS (and other chronic pain conditions) spend more time with their treating physicians than with family and friends. The majority are either on the wrong medications all together, under medicated, or over medicated. Not every chronic pain patient shares the same chemical breakdown or response, nor they suffer the same the same symptoms. Yet the majority seem to be put through the same cycle and rotation of medications like clockwork, trying to find what works. Regardless, they are taking the only immediate solution that might prevent them from cutting off a limb, or committing suicide. They are taking physically dependent mind altering, organ destroying medications that produce side effects, which leads to more medications. They endure this looking for relief, to somehow survive. As time goes by, the body adapts to the medications and they are then prescribed a higher dosage, or switched to another medication. I personally feel just as is it mandatory for a patient to be psychology examined before certain surgical procedures, it should also be mandatory to perform genetic blood screening to test markers for interactions, metabolism rate, and to prevent adverse reactions. If you are interested in learning more about this a good place to begin can be found at www.genelex.com

I am an administrator for a global support group for Arachnoiditis, belong to several arachnoiditis/RDS/CRPS, and chronic pain support groups, and represent the International Pain Foundation as a Delegate. I have not run the actual statistics regarding this, but have you put thought into how many chronic pain sufferers also suffer from erosive esophagitis, gastritis, and GERD? What about opioid constipation? Let me share something with you. When you are unable to use the bathroom for days on end due to gastroparesis, opioid induced constipation, or any other reason- YOU’RE BODY BECOMES TOXIC! Those who suffer with chronic pain need to be concerned with the level of toxins contained within their body. This not only increases your pain, but it makes you sick.

I am not by any means stating that those who suffer from a chronic pain condition do not need prescription pain medicines. I am not saying they do not need opioid medications. There were times I would have eaten a bullet or cut off a limb had it not been for them. There were also plenty of times while medicated on opioids that I battled with thoughts of doing the same. However, I do think it’s possible for a large majority who suffer from arachnoiditis, RSD/CRPS to be able to get off extended release prescribed medications, and only use an instant release medication when absolutely necessary. After all, I have accomplished this.  I hope that if you live with either of these conditions, that you could accomplish this in time as well. It does take time. More importantly, it takes a strong mind, consistency, determination and patience. I didn’t arrive at this level of owning my condition overnight. Not by a long shot.

I would like to believe that this would be the goal for the majority, if not all physicians treating chronic pain.  I don’t know how many times I have heard, or read, where a pain doctor has stated that their responsibility was to control pain, not to know all about your condition.  Meaning, they are not concerned with listening to you speak about the condition(s) you own. They don’t care to see your personal documentation of your pain. Meaning, they aren’t interested. Because you see, there are many practicing chronic pain doctors who simply shouldn’t be. I have lost count of the number of times that patients have been dropped and told to not come back because they have refused a spinal cord stimulator or pain pump. Why would any pain doctor who truly cared about their patient do this? Well, here are a few reasons that enter my mind. They spent their whole career as an anesthesiologist. Trained to look at a chart, and put the patient to sleep. They weren’t exposed to developing a doctor patient relationship. Maybe they took a look at how chronic pain is, and has been consistently on the rise and saw a Kah Ching factor. Another reason might be because you just prevented him or her from receiving his nice kickback. Or, perhaps they are burnt out. There could be a number of reasons. None of which are acceptable. These doctors have little to no compassion for their patients.

As a patient, you have to become your own advocate. Two things. Know your condition, and know your rights. For me personally, if I’m going to own a chronic pain condition(s) I want to know my condition to the core. If a diagnosing doctor isn’t capable or willing to provide this information, along with its given history and statistical prognosis, I will seek it out myself elsewhere. As a patient it is your responsibility to know and understand your condition, medications, recommended procedures and risks. It is your responsibility to make sure your medical records are current and organized. Whether you do it yourself, or someone helps you. It is also your responsibility and your right as a patient to view the documentation of your appointment before you leave. This is your medical record. If something isn’t correct, it needs to be addressed and resolved before you leave. You can also speak with your doctor regarding this and make an agreement that when you return for your next visit, you are provided a copy for review before they are added to your records. If your doctor gets an attitude regarding this, let them. They are still your records.

When I meet with a doctor, I see it like this. They are employed by me. The patient. Therefore, they work for me. My insurance pays them. What insurance doesn’t cover, is my responsibility to pay. If I am meeting with a doctor or specialist for the first time, that is when the doctor not only decides if I meet the criteria and prerequisites to become a patient, but also when I decide if the doctor meets mine. No different than when I take on a client or a dog. I work for them. If I don’t perform my job to the standard of my client, I will be fired. If I am meeting with a client for the first time, this is when they decide if I meet the criteria and prerequisites to hire me as their instructor/trainer, and when I decide if they meet the criteria and prerequisites to become my client.

I waited for over three years to meet with a specific doctor specializing in chronic pain. This is how my first visit went. Firstly, I endured the road trip while I was having a rough day with flare pain and inflammation. Secondly, I was dealing with the then undiagnosed complications of superior vena cava syndrome as well. Upon arrival, I was immediately taken back to get as comfortable as possible. The RN was friendly, pleasant and professional. As was the staff. The doctor comes in and introduces himself. I then introduce myself. I arrived with copies of my records, and I took my supplements with me as well to review. As he went through my records with me, we not only discussed them, he took his own personal notes. At one point, he had to exit the room. My journey was devastating to him. While he was out of the room his RN came in and told us that he may be minute, that he needed to take a moment to cope with his emotions due to what all I had been and was going through. He returned within a few minutes, and picked up where we left off. We discussed pain medications, and we discussed organics and supplements. Primal medications. He happened to be open, honest, and highly educated in that area. I hit the lottery with this doctor. He not only “got me” but he respected me and my wishes in regards to how I wanted to go about my treatment program. Thankfully, this was an afternoon appointment because we talked until it was time for him leave and pick up his children.

Fast forward. I arrive for my second appointment. The RN was exactly the same as she was before. Friendly, pleasant, and professional, as was the staff. I was taken back to get comfortable and wait for the doctor. He walks in with several papers stapled to one another, hands them to me, and asks me to please review them carefully and agree for them to be entered and filed as my medical records. He had documented and written several pages that included the timeline of events from the day of the spinal cord injury in 2009, to current. This included diagnoses and procedures, medications and reactions, trauma, trauma, and more trauma. I read his documentation carefully and agreed it was accurate. Before I left, I was provided a copy without asking for it. I honestly thought I was going to pass out from shock. This right here needs to be implemented as part of the standard operating procedures for all chronic pain doctors across the globe. And this doctor, well, he needs to be the one to teach it in my opinion.

Now, prepare for this. On this day I arrived in tears from pain. I was experiencing difficulty standing and walking as I was internally being electrocuted and set on fire. There were no rooms available immediately. I was taken back to the procedure room, helped onto the table, brought pillows and offered a blanket. The RN distracted my brain, gave me a tour of the procedure room and even open up cabinets to show me how clean and organized they were. She spoke highly of the doctor, how she was learning so much him, and how awesome of a leader and teacher he was. The doctor came in the procedure room, compassionate and understanding to my current condition, and shared with me that we could stay in the procedure room for my appointment time if we needed to. He didn’t want me to have to relocate to a room that was straight across the hall if I needed more down time.

In 2012, I met a doctor while admitted into the hospital for a horrific flare. Family and friends were in the room with me when he came in to meet me. He sat in a chair at the foot of my bed, and he asked me to describe what I was feeling. This is when my jellyfish in my spine analogy was born. It was the only thing I could think of to describe what I was feeling. He listened attentively with compassion in his eyes as I began to explain that I felt as if I had a gigantic jellyfish implanted in the center of spine wrapping its tentacles around my ribcage electrocuting me, sending high voltage frequencies throughout every fiber of my being. Tears flooded my face. I remember thinking to myself as I explained this to him that he was going to think I was either exaggerating, or nuts. You know what he did? He looked at every single person in the room, and said “what she has described, is no exaggeration. Have any of you ever been stung by a jellyfish?” The majority in the room replied with a yes. He then went on to say, “Now, imagine that sting amplified by 100 times.” I recall the shock on their faces, and tears ran down a very dear friend of mines face. He wasn’t finished though. He then said, “Now, imagine it amplified at least 1,000 times, and you can never make it stop. This is what she is fighting against. This is what she is living with. This is arachnoiditis.” We then went on to discuss my RSD/CRPS, and the history that comes with it.

Fast forward to 2013. When I was faced with fighting for my life. When I survived what I shouldn’t have. After ambulatory trips to local hospital which was epic failure, I requested on the last ambulatory trip that I be taken back to the hospital where I had met the kind doctor a year prior. I had been there several times since my journey began and the staff was always so kind and on their game. Every discharge, I would receive cards and letters from the nurses who took care of me. I arrived. Guess which doctor was on call. Yep. The very same doctor who not only understood, but who also finished my jellyfish analogy. He became one of my treating physicians, and he and his wife are now both very dear to my heart. He has not once told me I would never be capable of achieving any of my goals. Matter of fact, he has always encouraged them. He has always been supportive.

A little faith and encouragement can go a long way.

Now, for any doctors who may be reading this, isn’t this how you want to be known? Isn’t this the legacy you want to leave behind in the medical industry? Yes, it might take a little more of your time to actually listen, pay attention, and get to know your patient. But you know what else it takes? Compassion and understanding. If a doctor is practicing, and isn’t capable of exhibiting these traits, he or she is in the wrong field of expertise.

 

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My Treatment Program

Go to the beach!!! Feel the sand beneath your feet!!! Float in the ocean!!!

floating

 

My Diet

Strict Anti-Inflammatory Organic Diet

I know, this just sounds awful doesn’t it? It actually isn’t. Once you implement an anti-inflammatory and organic diet, and stick with it for a few weeks, your body will thank you. You will feel so much better. After the three week mark, give or take, when you stray from this diet, you will notice an immediate difference. Your pain levels will increase, and you may even get sick.

My Supplements

Alpha Lipoic Acid

http://umm.edu/health/medical/altmed/supplement/alphalipoic-acid

Apple Cider Vinegar

I use apple cider vinegar in my smoothies. Adding a tablespoon to water will help prevent lactic acid buildup. You can rub ACV directly on your skin for aching and sore muscles. Bragg sells organic apple cider drinks that are absolutely delicious! AVC improves digestion, alkalizes and hydrates your body, boosts the immune system, contains antibacterial and antiviral properties, and boosts brain power. There are numerous ways ACV is beneficial to our wellbeing.

B-12

Maintaining healthy B-12 levels is essential in chronic nerve pain conditions. I keep my levels around the 1,000 mark. I have taken the injections for the majority of my life as I was diagnosed with pernicious anemia at a young age. B-12 prevents nerve damage by supporting the way our body replenishes the protective covering over our nerves, called the myelin sheaths. It is also essential for brain health.

http://umm.edu/health/medical/altmed/supplement/vitaminb12-cobalamin

Calcium, Magnesium, and Potassium

I order my Calcium, Magnesium, and Potassium supplement from MegaFood.

Dead Sea Salt/Pure Magnesium

It is of known fact that every single cell in our body needs magnesium in order to survive. If a cell doesn’t have magnesium, it dies. Although it is present in many foods, it is also primal for us to absorb magnesium through the transdermal route. Magnesium also becomes more difficult to absorb through the digestive system when one suffers with digestive disorders or opioid induced constipation. If you are unable to get in the bath tub, perhaps try a foot soak.

http://www.ancient-minerals.com/magnesium-sources/absorption

https://ods.od.nih.gov/factsheets/Magnesium-HealthProgessional/

Echinacea

Builds immunity, treats infections and wounds. It relieves pain, reduces inflammation, and has hormonal, antiviral and antioxidant properties.

http://umm.edu/health/medical/altmed/herb/echinacea

Fish Oil

1200 mg 360 mg Omega 3

Be certain to verify it has been purified to remove all mercury.

Lypo Spheric Vitamin C

Lypo Spheric Vitamin C is absolutely a daily part of my routine. For those of you dealing OIC (Opioid Induced Constipation) 4 plus of these packets daily along with 4 tablespoons of coconut oil should fix you right up. Also soaking in pure magnesium will prove beneficial. If you remain consistent with this, you should be able to ditch the over the counter and prescription laxatives. This is coming from someone who could consume 1 ½ jugs of Go Lightly, take a Relistor injection, and still have no relief. If you have a low immunity, or get sick frequently, take the Lypo. If you are presumed healthy, take the Lypo. The link below is an informative video regarding high dose vitamin C infusions and Lypo Spheric Vitamin C.

https://youtu.be/ddgLzQavQzw?list=PLDmYewFhClvqYx-oO9IvbGyH7jL87xLkI

MSM

MSM supports healthy connective tissue. It helps with arthritis and muscle pain.

http://all-natural.com/natural-remedies/msm/

Olive Leaf Extract (Organic)

Olive Leaf Extract promotes a healthy immune system, increases energy, and supports the cardiovascular system.

http://www.herbwisdom.com/herb-olive-leaf.html

Organic Raw Honey

http://www.purehealingfoods.com/honeyInfo.php

Pineapple Bromelain (Organic) 500 mg chewable tablets

Bromelain is an excellent enzyme to assist with the prevention and reduction of inflammation.

http://umm.edu/health/medical/altmed/supplement/bromelain

Probiotics (Organic)

I take Raw Probiotics daily. I usually order from Garden of Life.

Pure Cranberry (Ordered from MegaFood)

Cranberries are high in antioxidants, and help prevent urinary tract infections.

http://umm.edu/health/medical/altmed/herb/cranberry

Turmeric Strength for Whole Body (Ordered from MegaFood)

Turmeric is one of my favorite supplements. It anti-inflammatory properties are remarkable. I take the supplement daily as recommended. I use the spice to cook with, add a little to my smoothies, and I make a tea with it as well. It can also be added to coconut and applied to the body for aches and pains.

Vitamin D3 (plant derived) 50,000 IU weekly

Vitamin E 1000 IU

Wild Blueberry (Ordered from MegaFood)

Zinc

Zinc helps to prevent bone loss, boost energy, fight against infection with its ability to stimulate white blood cell activity, and helps ease neuropathic pain.

Health Benefits of Zinc

Essential Oils

Essential oils have changed my life, and are vital to my treatment program. Each of the ones listed below are the ones I currently use. They can be diffused, inhaled, and applied topically with a carrier oil. I do not recommend ingesting them. I mainly use pure, cold pressed, organic coconut oil as my carrier oil, but also will use sweet almond, apricot, jojoba, and olive oil.

I am a coconut oil addict! I use it to do oil pulling with coconut oil, and frequently use essential oils with this process as well. Peppermint is my favorite. Please research into oil pulling and consider giving it a try. I swallow up to 4 tablespoons per day. I cook with it. I use it in my organic smoothies. I highly recommend looking into all of the delicious and healthy coconut oil recipes.

Bergamot

Antidepressant, cures infections, helps the digestive system, reduces fever, relieves congestion and stress, stimulates hormonal secretions, and greatly reduces pain.

I diffuse, use topically with a carrier oil, and add a couple of drops to my bathwater for pleasant, relaxing soak.

Cypress

Astringent, antiseptic, antispasmodic, respiratory tonic, sedative, and vasoconstriction are a few of the properties with cypress. It not only helps to prevent all types of spasms, but stops them upon onset. Cypress will also cause sweating, removing toxins.

I diffuse, inhale, and use topically.

Eucalyptus

Antibacterial, anti-inflammatory, antimicrobial, and antiseptic. Works as an expectorant and helps cleanse the body of toxins.

I diffuse and use topically.

Frankincense

Anti- aging, Anti-inflammatory, antiseptic, astringent, digestive, disinfectant, sedative.

I diffuse, use topically, and add a couple of drops to my bathwater.

Good Night Synergy Blend

All it takes is a couple of drops on the bottom of your feet to achieve a peaceful night of sleep.

Helichrysum

Anti-fungal, antibiotic, antimicrobial, anti-inflammatory, antispasmodic, antioxidant

Helps heart health, natural digestive and diuretic, liver detoxifier and stimulator, increases immunity, supports the neurological system and can alleviate symptoms multiple sclerosis. Works as a pain reliever and increases circulation.

I diffuse, inhale, use in bath water, and topically.

Lavender

Antibacterial, anti-fungal, relaxant, sedative

Reduces anxiety, stress, and depression. Can be used for headaches, muscle aches, and nerve pain.

I use lavender oil topically with a carrier oil to treat my allodynia. I use it in the bathtub, diffuse it, and put a few drops in warm water and soak my feet in the evenings when I go to bed.

Lemon

Antibacterial, anti-fungal, antiseptic, astringent, disinfectant, detoxifying

I diffuse and clean with this oil.

Lemongrass

Analgesic, antidepressant, antimicrobial, antipyretic, antiseptic, astringent, bactericidal, diuretic, fungicidal, insecticidal, nervine, sedative

I diffuse, use in a bath soak, and clean with this oil.

Marjoram

Analgesic, antispasmodic, antiseptic, antiviral, bactericidal, digestive, diuretic, expectorant, fungicidal, laxative, nervine, sedative

I diffuse and use topically

Melaleuca (tea tree oil)

I use tea tree oil as a preventative and treatment for infections. I use in my bath soaks, topically and I oil pull with it. Melaleuca has cured my urinary tract infections by soaking in water for up to 30 minutes, and then applying topically with a carrier oil.

Muscle Relief Synergy Blend

This blend of essential oils helps me tremendously with muscle spasms and pain. I apply topically using coconut oil as my carrier oil.

Myrrh

Antibacterial, anti-fungal, antioxidant, anti-parasitic

I add a couple of drops to my toothpaste at times, and I also oil pull with Myrrh. I diffuse and use topically with a carrier oil. I have also found that myrrh helps with swelling.

Oregano

Antibacterial, anti- inflammatory, anti-fungal, anti-parasitic, disinfectant

I oil pull with this oil, and use topically with carrier oil.

Peppermint

Anti- inflammatory, antimicrobial, balances hormones, expectorant, supports digestive system

Works great to reduce joint and muscle pain. And, it’s an excellent bug repellent! I spray it all around my home to keep the spiders away.

I diffuse, use topically with lavender essential oil, and I add a couple of drops to coconut oil first thing every morning to oil pull with.

Rosemary

Anti-inflammatory, Antioxidant, Antispasmodic, anodyne, balances hormones, supports digestive system

I diffuse, use in a bath soak, and use topically,

Wintergreen

Anti-arthritic, anti-rheumatic, antispasmodic, antiseptic, astringent, diuretic

I diffuse, and use topically. Keep in mind this is also a diuretic and you will urinate more frequently. This also speeds up the detoxification process to eliminate toxins that cause more inflammation and pain.

Ylang Ylang

Antidepressant, anti- inflammatory, antiseptic, hypotensive, nervine, sedative

I diffuse and use topically.

Massage

I honestly can’t express how important it is to receive a massage. Other than the fact it is relaxing, which is good for your mental state and physical health, it also releases lactic acid built up in our muscles, increases circulation and stimulates the lymphatic system.

Meditation

Meditation is essential to my overall mental and physical well-being. I am a Master Reiki Practitioner and also exercise yoga poses most every day.

Mind over Matter

Retraining my brain has enabled me to retrain my body.

There was a time where I little to no range of motion in my feet and legs. I was in physical therapy that took place in my home and could not accomplish simple tasks. My proprioception was all messed up, and to a small degree at the time of writing this, it still is. I was in a wheelchair and used a walker. The type of walker with a seat. This was most frustrating to me after leading such an active lifestyle. Being exposed to different textures was painful for me in areas I had feeling. Everything became a challenge for me. Everything. Through it all, my inner drive to achieve trumped that which my body was telling me could not be possible. This doesn’t mean I didn’t go down on the floor in tears wanting to throw in the towel. I did. This doesn’t mean I didn’t scream in pain, or out of frustration. I did. There were times I sat on my deck and seriously contemplated cutting my legs off below the knees, while I would all but drown in my own tears. I even spoke to my doctors about this to see if I was a candidate. I was told if I went that route  the pain would still be there. This is referred to as phantom limb pain. Even though that part of the body has been removed, the nerves are still telling the brain it exists. This is an example of RSD/CRPS- HELL. I knew if I was going to stay in this battle, I had to be able to walk again. I had to train again. And you know what else? I needed to be able to stand in my kitchen and cook again.

Every single day I began working on my mobility. I would stretch, and attempt to rotate my ankles, move my toes. When they wouldn’t cooperate, I would physically manipulate them until they did. Even if I moved them in the slightest, this was an accomplishment. In time, after physically manipulating them, I began to be able to move them on my own. Every single time I would move them I was telling my brain exactly what I wanted to happen. If I were working on moving my toes, I would repeatedly tell my brain my toes are moving. Same with my legs. I wasn’t asking my brain. I was telling my brain. All doubt was removed. It didn’t matter if I were able to move them without physical manipulation or not, because in time, I did.

There have been so many times throughout my journey that I have been walking, and then bam. The legs become hindered and want to completely shut down. They would freeze. If I over- do it now, this will happen. There have been so many times when this has happened at random when in my mind I haven’t over-done it and I have screamed out to them, “Move Damn it! Move!” They did. Not every single time. But the point is, they did.

I practiced the same thing with textures. I would take items of different textures and touch them to my body. I would use a textured wash cloth and rub it on my body. Even though in the beginning this was painful to me, I told my brain this was a textured wash cloth and this was NOT painful. I would use sponges, stand on concrete and grass. Anything I could think of, I would do it. I would touch cold water, and tell my brain this is cold water, not hot water, and this does not burn me. I would get the water as hot as I could handle (I also had assistance with this so I would not burn myself as I could not always tell how the water actually was) and I would tell myself this is hot water. Another example would be the rain. I have always loved to feel the rain on my skin. When I lived in the Bahamas as a teenager, I would shower or wash my hair in the rain. When I was working training dogs and handlers, if it rained, we still trained. As long as there wasn’t any lightening, we trained. This was another aspect of my life that changed. Rain hurt me. When it hit my skin it felt as if I were a human pin cushion. In time, I began going outside in the rain and I would sit or stand in it. The whole time I was telling my brain “This does not hurt me” over and over. I can now feel the rain on my skin without crying from pain.

Retraining my brain and body allowed me to adapt, improvise, and overcome.

Adapt ~ Improvise ~ Overcome

In order to be successful at adapting, you must be prepared.

These are a few ways I adapt. Firstly, I never leave home without having a bag packed. Some of the items in my bag include, cool and warm clothes, Raynaud’s gloves, socks and extra shoes. If I’m not wearing my back brace, it is packed.

If I use my wheel chair, it is either because I’m doing something I need to keep up the pace with so to speak, or so I don’t overdo it causing inflammation, swelling, and absolute internal chaos. This means I have given up some pride, but in by doing I gained confidence. My condition requires me to get flat several times a day. I can only sit, stand or walk for so long. I will take a bench/booth and stretch right out, bend over and grab my knees if necessary. There is no shame. I will do whatever is necessary to relieve pressure from my head and spine. If I’m in a public place and getting flat isn’t option, I will go to my vehicle. No bench, no booth, no problem. I will take the floor or ground. I will do what I have to do. I absolutely must remove the intense pressure and pulsating in my head and spine, and cause as little inflammation as possible. If I don’t, my movements will become hindered, my muscles will begin to spasm, and nerves will begin firing off. If I cause too much inflammation, I will either have great difficulty walking, or won’t be able to walk.

When I go to someone else’s home, I may need to ask them to adjust the temperature or turn off a fan. I may need to put on my gloves to be able to touch certain things, get them warm, or protect them from air. Everything in our environment produces negative or positive energy, which is stimulation. For me, it is of intense stimulation. If I need a sensory break, I will go outside, ground, focus and meditate.

Grounding, is absolutely essential to my treatment program, as it should be to yours too. Earth is an electrical planet. We are bioelectrical beings, our body functions are electrical. Whether you suffer from chronic pain or not, Grounding should be a part of your daily routine. The human body generates more bioelectricity than a 120 volt battery. Every neuron in our body uses electricity to function. Every time you have a thought, experience pain or a sensation, electricity via our nerves is sent to the brain. This can be seen on a brainwave. Same thing with the heart. With every heartbeat, there is an electrical impulse. Our bodies require electrical transmitters in order to send messages within our body.

Some animals use bioelectricity to hunt prey, like the electric ray or shark. I classify grounding as being primal. I feel as we have evolved, and have advanced in technology that we have not only strayed further from of our primal ways, but we have simply forgotten about them. We now live a life surrounded by all sorts of household appliances, cell phones, cell phone towers, Wi-Fi, etc., which when in use, produce electromagnetic waves also known as EMF. Electromagnetic waves always disrupt our biological electrical currents and damage our physical health. ALWAYS.  There was once a time we spent far more time barefoot, outside. We were balancing the energy within us, and absorbing minerals from earth. We also weren’t exposed to near the amount of electromagnetic waves. We weren’t attached to our cells phones, iPods, and headsets.

Suffering from a chronic pain condition means we don’t always have the opportunity to enjoy the great outdoors. Some may be suffering from depression, or maybe our pain won’t allow us to get out. Perhaps we are bedridden with a horrific flare. There have been times throughout my journey I have spent up to two weeks in the hospital due to a flare. I will be forever traumatized from the 2 plus weeks I fought for my life. Victorious, but traumatized. Coming off RX pain medications allowed me the opportunity to actually feel what was going on in my body, with a clear and coherent mind. I was able to see how much grounding helped me. The electricity surging throughout my body stopped. I also noticed that when I would use an electric blanket, the electricity in body would increase and then the burning would begin. Every single day I ground myself as often as possible. At night before I go to sleep I place my feet in a bowl of warm water and lavender essential oil. I am amazed at how much this has helped me.

I also began to research in great depths regarding nerve injury, nerve memory, and nerve regeneration. I began implementing essential oils that specifically assisted in proper nerve function. Now, as the nerves begin to regenerate, they will begin to fire off at random. This can cause increased burning, electrical pain, and spasms. There is so much information I could share on this topic, but I will save it for another blog post. For now, I will leave you with a few links pertaining to the central and peripheral nervous systems, and nerve regeneration.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3204849/

http://www.medscape.com/viewarticle/480071_5

https://en.wikipedia.org/wiki/Central_nervous_system

One more important topic that needs to be addressed. I don’t feel arachnoiditis and RSD/CRPS patients should ever use ice in their treatment program. Ice can destroy the myelin sheath that protects our nerves, will cause blood vessels to constrict more reducing blood flow, and can actually cause progression. If you would like to read more about ice and RSD/CRPS please click on the following link.  http://www.rsdhop.org/ice-and-crps.html

If you suffer from archnoiditis, RSD/CRPS, or any other chronic pain condition- you are on a journey that requires you to be fierce. Be up for the task, and own your condition. Beginning today, remove the words I can’t from your vocabulary, and watch as you begin to achieve what you once perceived as impossible.

 

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Sources:

http://healingscents.net/blogs/learn/18685875-how-essential-oils-enter-the-body

https://www.organicfacts.net/?s=coconut+oil

https://www.organicfacts.net/?s=Helichrysum

http://draxe.com/frankincense-oil-cancer/

https://www.organicfacts.net/health-benefits/essential-oils/health-benefits-of-frankincense-essential-oil.html

http://draxe.com/myrrh-oil/

http://draxe.com/peppermint-oil-uses-benefits/?utm_campaign=EO-Oct-2015&utm_medium=Social&utm_source=Pinterest&utm_term=Peppermint

https://www.organicfacts.net/health-benefits/essential-oils/health-benefits-of-peppermint-oil.html

https://www.organicfacts.net/health-benefits/essential-oils/health-benefits-of-rosemary-oil.html

https://www.organicfacts.net/health-benefits/essential-oils/wintergreen-essential-oil.html

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My Journey

In October of 2009, I went in for a lumbar puncture. This would be my second one. This day changed my life forever. The whole morning had been a mess. The hospital had lost my files. It took almost three hours to get into the surgery room. During the previous puncture, I had been sedated.  Not this time. No sedation, not even a muscle relaxer to calm my nerves for this procedure. The physician performing this procedure did not have an assistant to help him. I had a needle in my spine attached to a manometer to record the pressure. At one point the physician couldn’t reach a specific tool he needed to finish the procedure. As he reached for the table, (that was out of his reach) he lost his balance, and in turn jammed the needle into the cauda equina spinal cord nerve roots, penetrating and puncturing through the frontal part of my sac.  The sensation was beyond any torture I could have imagined. I screamed a silent scream of agony. Tears flooded my face. A dear friend of mine was with me during the procedure, holding onto my hands. The torture had only begun. Before the physician could remove the needle, he had elevated the table.  That motion jarred the needle in my spine even more. This led me to also having to receive 2 blood patches due to CSF leak. The rest is a story of a journey through hell from medical harm that left me unable to walk and diagnosed with adhesive arachnoiditis, RSD/CRPS, and all that comes with it. Below you will find images of some of my medical records documenting part one of my journey.

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Arachnoiditis, the scar tissue, starves the nerves of the essential nutrients derived from my cerebral fluid. The spinal cord nerve’s purpose is to feed and control specific organs and muscles and send information to my brain. The scar tissue has devoured them; attaching itself to the wall of my dural sac, leaving me with what is referred to as Empty Sac Sign. Meaning if you opened up my spine, you would not see that part of my spinal cord. My central, sympathetic and parasympathetic nervous systems have been grossly compromised.

Between the years of 2010 – 2013 I lost count of the hospital emergency room visits, hospital admissions, and numerous diagnoses. In 2010, I was diagnosed with RSD in my back and lower extremities. RSD is also known as CRPS. I would suffer torturous spells of uncontrollable spasms, which at one point my gluteal muscle completely separated from deep within at the hip. This was extremely painful and took over a year to heal. My feet, legs, and spine would swell and become extremely discolored. I would also suffer from what is known as petechiae. Petechiae appears as small red or purple spots caused by bleeding into the skin. During this time I collectively spent several months unable to walk. I have honestly lost count of the number of times I have had to push myself and retrain my brain to walk again. Retraining my brain has become part of my daily routine. I am in a constant battle with my own being. I lost bladder function as well. I was unable to be touched, from allodynia. My clothes would hurt me, the air would burn me. I underwent two bi-lateral spinal nerve blocks, this threw me into a horrific flare. I was sent for a myelogram, which also sent me into a horrific flare, and I had to receive yet another blood patch as well due to CSF leak.

This brings me to part two of my journey.

In 2013, I was admitted into a local hospital with a severe flare of arachnoiditis and RSD/CRPS. A local pain doctor came to visit me, to offer me a glimmer of hope and take me on as his patient. He had reviewed all of my records, sat with me in the hospital and discussed my conditions with me and my family. When I was released from the hospital he put me on Morphine SR 60 MG every 12 hours, and Morphine IR 15 MG three times per day. He was aware I had seen one of the top neurosurgeons in our state, who had made it very clear I was not a candidate for a pain pump, or any other type of surgical intervention.

Below, you will find in his own dictated documentation that he agreed.

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He convinced my caregivers that a spinal cord stimulator trial was our best option, which resulted in failure. Wait, didn’t he just state that any type of surgical intervention for arachnoiditis would only lead to further complications down the road? He then convinced them that without a pain pump implanted I would die, as my body would not be able to handle the levels of pain which caused my blood pressure and heart rate to stay so high. Enter pain pump.

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Any good surgeon will tell you that when a foreign object is placed within the body of a normal person, scar tissue will develop. When one has  arachnoidits and RSD/CRPS, the body is apt to attack tenfold, viciously.  This procedure not only progressed my arachnoiditis, but also caused my RSD/CRPS to spread full body. Here is the rest of the operative report.

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They cut through my flank (right within Gluteus Medus and Gluteus Maximus). There is what is called a safe zone in this area. However, in my condition at the time this procedure should have never been performed. I was unable to sit without leaning on the right side of my body. I was unable lay flat or on my left side. I already had RSD/CRPS in my lower body. The pump was placed in the left muscle. Because of the RSD/CRPS, the right side of my flank also felt as if the procedure took place there as well. It still does to this day.

During this time of having the pain pump implanted in me, I took thorough notes, pictures, and video. I repeatedly shared with the pain doctor the pain had increased, the pain had also moved throughout my whole upper body, and continued to show him the photos and journal of my pain. Each visit I showed him the swelling of the catheter protruding out of my spine as well. I knew something was wrong. I was cussed and yelled at by him in his office. I had a witness with me when this happened. He stated he would refer me to the neurosurgeon to have the pump removed. He had his secretary call the neurosurgeon and made the referral. Which he later denied in a letter to the state medical board. I have the documentation of the referral. I was then called by his wife and told that if I proceeded with going to the neurosurgeon he would drop me as a patient. During this time I had been to my appointments with him for refills with my pain pump. He was also having me come to his office once per week due to all of the complications I was enduring, none of which he documented. However, I documented my every visit to his office, including my road trips to his office, and took a witness with me. Obviously, I had a witness with me as I was unable to drive. I also have the documentation that shows the amount of medication filled each time, and that the pump was in fact delivering the correct amount of medication.

Four days before having the pump removed I was due for another refill. I was expressed my concern to the neurosurgeon and his staff that I feared having this pain doctor perform the refill. This too was documented. I had no choice or I would have gone into immediate withdrawal. The doctor would not allow me to come to his clinic for the refill, but instead had me meet him at a local hospital. We were told we would not be allowed to have a witness in the room with us as well.

By that evening I began to go downhill. The next day, I thought I was going into a horrific flare. By the day of the surgery, I just knew I was in a bad flare and that hopefully everything would be alright.

Day of surgery arrives to remove pain pump. (October of 2013) Procedure went well. Unfortunately, due to the massive scar tissue the catheter could not be removed. The catheter goes in at L3 and runs up to T9 in my spine. My body continues to attack it with scar tissue growth. The neurosurgeon came to see me in recovery. He told me I had not been in flare. He stated they observed the pump and it was not working.  It had the full volume of medication in it. I was in withdrawals. Withdrawals that after this procedure almost took my life. There were numerous ambulatory trips, and hospital admissions fighting for my life. After a several weeks, I somehow managed to survive that which I was not expected to. During this time, I was also overdosed on 100 mcg fentanyl patch at a local hospital (not the same hospital which I credit to saving to my life) However, I will say this. The doctor who did this, saw my intense pain and suffering and after reviewing my records and seeing the amount of medications this pain doctor had previously had me on, she truly thought my body could handle it. She certainly did not mean me any harm.

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My journey through medical harm, arachnoiditis, RSD/CRPS, and all that comes with it has been a journey through hell. However, through this hell, I have learned a lot and have truly been blessed. I learned how strong I was. I learned that most powerful weapon any of us have, no matter the battle we face, is our brain. I have been blessed in knowing that by sharing my story I have been able to help countless chronic pain sufferers who live with arachnoiditis, and RSD/CRPS and other chronic pain conditions. That alone is the only good that has come from my journey. I have lost family through this, and at times I almost lost who I was. Unfortunately, so many others have to endure this same loss. The fortunate ones, have their families and spouses stick by them and help them by encouraging and supporting them. They put forth effort to research not only the physical conditions, but they are understanding to the mental battle we face as well.

A gallery of my images can be viewed from my Facebook Albums

https://www.facebook.com/Melanie.Helmick.Lamb/media_set?set=a.10202493735373618.1073741833.1502002081&type=3

Throughout my journey, I began spending my time researching copious amounts of information. After the events of 2013, that is what consumed the majority of my time. I knew there had to be a way to live with this condition and not be dependent upon opioids, or other mind altering, organ destroying medications to do so. I was determined to find a way. I can now say that on the day of me writing me this article, I do not take daily RX medications for pain control. Everything I do is what I reference as Primal Medications. I use essential oils, organics, and I eat an anti-inflammatory diet. Does this mean I am pain free? No. Does this mean my body doesn’t burn? No. Does this mean the jelly fish in spine no longer attacks me? No. I’ve just learned to control it better by equipping myself with the necessary tools to assist me in better pain control which has given me a much better quality of life, and has added back to years of my life that was taken from me. I have learned to own my condition, and you can too.

Flashback to 2006

In 2006, I had a client to come to me needing an assistance dog. She suffered full body RSD/CRPS. Our initial phone conversation lasted almost 2 hours. She had specific needs, and wants. She wanted the dog that was out there for her. She wanted the dog to be a shelter dog, because as my much as she needed rescued, she needed to rescue a dog. She needed to feel she was doing something good, providing a purpose. She wanted a lab. A yellow lab. Whose name was Dakota. She even asked if I found the dog for her, would it be possible to transition the name to Dakota. I was into over a month searching for her dog. She would not give up, nor would I. She called me up one evening and told me not to worry. She shared with me that God told her the dog would be provided, and not only that, the dog would be provided on Wade’s birthday (my middle son).

Wades birthday rolls around. We are at my parents celebrating with the family gathered. It was July, so that meant pool party and cook out! I receive a call from a professor who taught at the University of Arkansas who was a committed and dedicated animal advocate. She had introduced me to first bait dog, a Doberman, years back early on in my career. She called to tell me about a yellow lab that she and her daughter had taken on. She knew the criteria I needed met to take on a working to train and place. She began to tell me about him. I asked his name. It was Dakota. We picked him up on our back from celebrating Wades birthday.

Dakota, I was just a vessel in his training. There was a higher power involved in that contract. Every single training phase he worked through, he did it as if he already knew what I needed him to do. He went on to provide her stability, turn on and off light switches. Alert her to her flares, apply his body on her during violent spasms. He switches her laundry. She can ask him to go get her reading glasses, and he will go to the second story of their home, enter their bedroom, locate her glasses, and bring them to her. This client, also shared with me that God had revealed to her I would end up with RSD/CRPS.

Little did I know how my journey would unfold.