It’s not the same thing, Part 2

In Part 1 of this story, I disclosed a horrific scene that has plagued my mind and body for decades. The only way for the incident to have been true and for me to have survived without going completely MAD, is by the grace of repression. It’s a coping mechanism of our mind that we have to deal with severe trauma lest we fall into addiction, self-destructive, catatonia, mental illness, homicidal/suicidal behavior, or worse. Even though we may not “remember” what happened, the mind and body never really forget and for me, the stored memories of a fateful day has been revealed in bits and pieces over a very long period of time. A strong image, smell, sound, or new traumatic event can trigger a chain of events that brings it back and more recently for me that trigger has been convulsive episodes. The episodes revealed the truth.

A waking seizure attack comprises convulsive episodes for me that are not epileptic nor psychogenic. The seizure comes virtually anytime and, less than 1% of the time, a memory has gotten unlocked underneath it before the episode ends. It’s as if my brain freezes and goes back in time accompanied by a feeling of terror so intense that my brain feels like it is on fire; I cannot stop the screaming. There is horrific pain, gasping for air, and thoughts that slow waaaay down. An observer would describe it as a seizure followed by a nearly catatonic state when I cannot move or speak or breathe. Limbs often shake, one violently flapping then the other, then both legs involuntarily move very rapidly together-and-apart like that of a child in an autistic fit of sorts. I am awake; my eyes are closed but eyelids twitch or squeeze as if squinting (in one eye or both). I am always aware of my surroundings although I may or may not be able to speak when it stops. This electrical activity of my brain-on-fire has had the power to unlock images and scenes from my past that fit what I already recall in my history. It’s as if the terrifying emotion that I was unable to express at the time of the incident is finally released to the light of day. It is not fake. The memory always fits a scene that I do recall from my past, much like what happens when you finally locate a missing piece of a puzzle. A puzzle with edges fried by fire, that is. Finally you can see the full image albeit tainted by the horror of what you are now seeing more clearly.

I concluded Part 1 with two methods that my mentally ill father used to try to get me to forget what happened at his home when I was a pre-teen. Years later I would come to understand that he was 1) using methods that he probably had tried on himself to manage the thought disorder of his own paranoid schizophrenia, 2) experimenting with mind control methods popular in the fields of psycho-cybernetics and psychology of the 1970’s, 3) drinking a lot of wine, 4) not hiding what he was doing most of the time (i.e. there were witnesses who have corroborated pieces of every scene that I have recalled), and 5) trying to get me to forget what happened, perhaps knowing the damage that trauma in his own childhood had done to him. I believe that his mental illness was a consequence of ritualistic (i.e. continuous) verbal and physical abuse by his mother/passive father until he found a way out of the home as a young adult by marrying my Mom. But RoseAnne was fleeing her own abusive father/passive mother. Their marriage was doomed shortly after it started as abusive patterns repeated themselves between them, spilling over into the lives of little Julie, Michael, and Robert. Eventually my Dad ran away, came back, then ran away again for twenty-seven years. What a mess.

Sadly when those really bad things happened to me at his home, he wouldn’t know the difference between how to help me and how helping me ended up hurting me even more. To get me to forget a horrific murder scene, the maiming of his pet German shepherd in a satanic ritual, and the sexual abuse by two women ALL DURING THE SAME DAY of a visitation to his home, my Dad tried used a method of instilling intense FEAR. He wanted me to forget what happened by attempting to cover it with other intense emotions, images, and threats. Forget trying to talk about it!!! (I am aware that there are witnesses who were in the house at the time who have either been sworn to secrecy or were under the influence of so many drugs and alcohol that they have some level of amnesia as well. Maybe something will trigger their memories one day? Maybe one of them will try to find me through this blog?) My Dad was wrong. Subjecting me to more fear compounded the torture, the trauma even more. Eventually I remembered the most important parts of the story. I wrote about it to release it’s power over me and highlight the power of our Lord to overcome my dark hell on earth.

I describe one method my dad used to instill fear in Part 1: nearly drowning me in our backyard pool. The damage to my neck has continued for my entire life. Another method he tried was injecting me multiple times with a psychedelic drug that left pock marks on the inner surface of both of my elbows. Perhaps he thought that the altered mental state created by the drug would cover my memories? He was right: I didn’t recall most of it for two decades. The blisters that appeared right afterwards then later the scars raised repeated suspicion from our family doctor, sure that I was shooting up drugs but hey, I was just a kid at the time. I still have the scars to this day albeit distorted by the effects of aging. Another family member disclosed that some people in my dad’s circle of people used hard drugs in addition to satanic rituals such as seances; sadly he won’t tell me anything else, alluding to needing to protect his wife who I believe was also present. The seances were very likely held at a table right in front of the couch to which I retreated during that fateful day at his house. This exposure to the supernatural world opened me up at a tender age to demonic influences of the occult (that would be compounded by teenage curiosities with a Ouija board). The abuse, the occult, the psychedelic drugs, and perhaps even changing body chemistry of puberty created a lock-down in my mind and body that most people would never survive. I know. It took me a year in a healing prayer ministry to start to understand the power of the demonic and how to stand firmly with the power of Jesus Christ. And as I write this, I am the only surviving member of my immediate family, all tainted by various forms of evil known as abuse.

Three More Methods

For most of my life I have had difficulty falling asleep. It used to take me up to 90 minutes to settle down enough to finally drift off to sleep or rather endure the difficult sequencing required to let go. The problem? Intensely fearful thoughts to the level of waking night terrors at times. If I’d ever had a nightmare more than once, my mind would often recall them again and again at random while I was trying to calm my thinking down enough to be able to sleep. Sometimes a scary scene would continue getting worse and worse then other times it would just keep repeating itself like a scene viewed from a broken piece of film flapping in an old theater projector. As I grew older I learned a technique of trying to re-write the dream or images to a happier ending. Sometimes it helped and sometimes it didn’t. Eventually I passed out anyways from mental exhaustion. Most of the abuse that I experienced in my childhood happened either at night or when falling asleep. No surprises here that I would need to work on this problem for most of my adult life: dealing with night terrors and waking nightmares, terrifying dreams overnight, then flashbacks of abuse.

Another problem was the black-and-white flashes of lighted psychedelic designs that spun in my mind’s eye or were thrust near-and-far at quick intervals before stopping. These occurrences happened every single night as I was trying to fall asleep, somewhere between the first and second stages of REM sleep. I thought it was normal. It was as if someone was focusing the beam of a flashlight on a toy pinwheel or a spinning saucer 2 to 3 feet in front of my face. The bedroom would be dark and my eyes closed after lying down to sleep but the lines and designs in my “mind’s eye” were as clear as a pen and ink drawing on bright white watercolor paper. There was no way to stop these images from coming to mind. They happened every single night of my life for decades. Even though I had taken psychology classes in college and worked many years as an Occupational Therapist in the mental health field, it didn’t register to me that this nighttime behavior wasn’t normal until I finally started getting counseling in my 40’s specifically for this type of abuse. Ritual abuse occurs when a person of influence uses a repeated, harmful behavior to control another person for the gain of the abuser, over an extended period of time. It can be spiritual, demonic, or other forms as well. Flashing black-and-white images in front of my face when I was falling asleep is the third method of ritual abuse that my Dad used to try to get me forget, to try to control me and my thought processes. (It’s actually related to a twisted form of psychocybernetics invented by Maxwell Maltz in the 1960s and described here.)

I cannot explain exactly when or why the nighttime “flash-treatments” began. I don’t know if my Dad said anything when he did this or when he eventually stopped them. How many times did it take for it to become almost permanent in my mind? There was enough repetition to cause harm. After I came to faith in Jesus Christ and about a decade of therapy, the images slowed then stopped. I don’t see them anymore when I am trying to fall asleep. Praise the Lord! In examining all of this, I realized that my dad’s use of strange rituals that were frightful to me as a child were not isolated events. In Part 1 I described how my dad tried to help my brother Mike via messages of his voice on a tape recorder that he played on a special speaker under his pillow as my brother was falling asleep. Those messages were intended to help my brother’s self esteem. Decades later Mike would tell me how much they damaged him, that his Dad must have thought so poorly of him that my dad had to repeatedly tell Mike via a cassette tape that he was a “good boy.” Why didn’t my Dad just say it to Mike’s face? Tell Mike that he loved him? Since I do not recall much affirmation from my Dad as the oldest sibling (who actually looked like a member of my dad’s family; Mike did not and this was an important point that my Mom told me many years later), I doubt Mike got any affection at all. But how could he? My father had none to give . . . Such realizations ultimately helped me to forgive my Dad and paradoxically paved the way to remembering more of my past, good and bad.

Perhaps this all sounds too crazy to believe. Maybe for you but not for me. My Dad’s experimentation didn’t end there though and it would be sprinkled in some manner throughout the years that my Dad was still around. One night when my parents were still together, my Dad had taken the crucifix down from the wall in my brothers’ room to make some kind of repair. When he didn’t come back with the cross right away, I snuck down the stairs to see what he was doing. I believe Mike followed sometime thereafter but I am not sure. The lights were on in the stairway but the basement was very dark, which seemed strange to me. The stairwell was placed in the middle of the basement area of our ranch home and my Dad had created two rooms on either side of it: a laundry room on one side and a workshop on the other. There was no door on either room so you could travel from one to the other underneath the stairs between the two rooms. The walls were a white stucco over concrete, the floor was poured concrete, and the entryway into each room was made of brown paneled walls with a light-colored wood trim around the edges. I spent a lot of time in both areas, fascinated by all of the tools in the workroom.

I slowly peeked around the edge of the paneling into the doorway of the darkened room and was frightened by the face of my Dad lit up by candlelight. What the . . .? He had a look of surprise on his face that I had come down there; evidently I was very quiet sneaking down the steps, dressed in my pajamas and socks. I came around to the width of the opening just long enough to see the cross propped up on a wooden table in front of the mirror of our old bathroom vanity (affixed like a cabinet to the side of the wooden staircase). The Jesus figure and front of the wooden cross shined in the glow of the candle held by my Dad. He was looking at the reflection of the cross in the mirror and doing something that I knew was weird and scary and that I shouldn’t be seeing at all. I don’t know if my Dad made his usual “Yaaaaarl” sound to get us out of there and back upstairs or if it was my sheer terror that caused me to turn and escape as fast as I could. Who knows where Mike was in all of this?! The rest is a blank slate in my memory. It was at least a day later before the cross was back on the wall in my brothers’ room. Seeing that nail hole in the wall without the Catholic cross hanging there sure was creepy until then. I don’t recall my Dad or anyone else ever saying anything about it ever again.

The fourth method that my Dad used to get me forget became the seed of agoraphobia that would plague me my entire life. Sure, it’s normal to be afraid of spiders. What is not normal is experiencing a fear so terrifying that you KNOW you will DIE and have physical symptoms that appear to be fatal when faced with anything larger than a tiny bug on a bedroom floor. Then there are the nightmares for days afterward seeing one even in a movie or a TV show. The fear never, ever goes away or gets better with exposure, talking, desensitization techniques, or whatever anyone tries to do to help me get it to change. I know, I have tried. It’s just not that simple especially when the origin for me was the deliberate use of an already fear-mongering creature to scare me so badly that I would forget the trauma somehow associated with it. I am not even sure how the association was made, just that I knew I would DIE if I remembered what happened that fateful day at my Dad’s house; the phobia reinforced the amnesia. Layer it all with demonic oppression where satan himself uses the fear, the memory, the remembering, the telling, the physical symptoms against you with lies and a worsening of all associated types of pain. They call it spiritual attacks. Perhaps the Lord allowed him to inflict me with convulsive episodes all these years? Perhaps it’s now a tool to uncover the truth of what happened so many years ago? To let me know just how bad the scenes were that it would take thousands of profound electrical misfirings of my brain to uncover it? Talk about a lock-down . . .

Maybe you recall the scene in first Home Alone movie where an 8-year-old boy named Kevin McCallister was accidentally left home alone then tried to outsmart a pair of thieves? One of the booby-traps he sets for them includes letting loose his pet tarantula. I cringed in horror as I knew what was about to happen at some point when the spider met its intended victim. One of the bandits screamed in fear as the spider crawled on his face when he was lying face-up on the stairwell inside the home. Granted probably most of us would scream holy terror as well! But we would not go catatonic in an effort to avert death. A true phobia is not a rational fear, not a moment of screaming that resolves thereafter. My Dad put the large spider on my face to get me to forget the trauma of three horrific scenes of terror in a single day. Equally as traumatizing as the huge spider was the image of black beady eyes of that spider staring at me. I really cannot say anymore right now. It’s still quite disturbing to put all of this together here. This realization only came to me recently and I have just begun the work of unpacking it. The effects of using fear to control me has resulted in lifelong behavioral anomalies, irrational fear, supreme difficulty studying pests and insects as a Master Gardener, avoidance behaviors, nightmares, and more. That is what a phobia does to a person. It starts a survival mechanism of the mind then continues despite its harm. And in the end, it did not get me to forget forever what happened, what I witnessed. Eventually I did remember. In the end, it just inflicted even more harm.

A fifth method was hypnosis although I don’t think that it was applied directly to me. All 3 of us kids were in my Dad’s workroom with him one afternoon when I don’t think my Mom was home. She was often at church doing work as President of the Altar Society at St. Cletus Church. I remember my Dad sitting one of my brothers on a metal stool, the one with the red vinyl top on it, and dangling a chain with a pendant on it in front of his face. My Dad instructed him to keep his eye on the pendant as it moved from side to side. My other brother and I were watching intently as my Dad went through some kind of sequence in a slow, low, calm voice. “You’re getting sleepy” or something like that. I don’t recall if either one of them fell asleep or changed posture in any way; I know that I was able to look around the room shortly thereafter, feeling like it didn’t affect me at all. My other brother was next. I didn’t volunteer. I was curious but also just old enough to know that there was something not right about what my Dad was doing with us. I wish I could remember what the goal was, if there were any special instructions my Dad tried to “suggest” under the influence of hypnosis but I do not. I may have asked what it was used for? Funny how a child is curious about what he or she is seeing a parent do even when it is exceedingly harmful and never should have happened. At a gut level, this experience made me resist the offer of hypnosis from every therapist I have had in my life who wanted to “help me” remember the forgotten years of my childhood. No, no, never!

We should never experiment with mind control techniques on another person when we are not trained to do so and I believe rarely even if the person of influence is trained. The Lord will bring back the memories in His own way and in His own time when the person is ready for them. More importantly I can see no reason for even a trained person to use mind control techniques like hypnosis on a child! It doesn’t matter if it worked for someone else. It’s not the same thing to use a method or object or saying or rationale for mind control over someone else especially without the consent of the other person. A child cannot give such consent as he or she cannot understand the potential risks. I also disagree with a parent providing consent for a child to be hypnotized. If what anyone is doing runs the risk of violating another human being’s right of consent at any age then it may construe undo influence and potentially abuse. We must filter our actions as an adult with what is morally good, what is right, what is fair, and what our Lord Jesus Christ instructed in His Word for how we should live; consulting mediums and mind-altering drugs and ritualistic sayings/prayers are taboo! Tapping into the unconscious mind runs the risk of inviting the supernatural world of which satan rules. Satan only seeks to deceive and destroy. Don’t try to get ahead of God! Please do not yield to “whatever works” Gentle Reader!

Stated another way, we must not “experiment” on another human being, especially a child, hoping for a certain outcome when we can easily run the risk of hurting him, her, or even yourself and your relationship if we don’t get it right. How do we know we will get it right? Neural retraining and the like are popular now in the treatment of Non-epileptic seizures and many chronic illnesses these days. If you must use mind-altering methods, please choose degreed and certified professionals with proven track records and decades of success. Further, I contend that a parent must never treat his or her own child even if degreed or certified in a given technique. My Dad was one of the most extreme examples of the damage that can be done when this happens. My Dad inflicted immeasurable harm that damaged me and my brothers. Although mentally ill, he was still responsible for his actions as we all are. Knowing that he was mentally ill, struggling to overcome it, and abused as a child helped me much later to forgive him and begin to heal. If my Dad did not repent and come to faith in the Lord, Jesus Christ, then God’s Word promises that my Dad will punished one day by a righteous God. He said that he came to faith in Jesus and I hope that is true; the Lord’s mercy and grace will cover him. I don’t like to think that my Dad will face eternal damnation; it’s just not for me to worry about as I focus now on what I have learned along the way and even some good memories that came forth with the bad ones. We did get to make our amends of sorts in 2011 and for that I am very glad, at peace. Further, I have come to understand that everything that happened to me was ultimately a consequence of a larger concept called “sin” and of living in a fallen world. This world is laden with evil led by satan himself. My ritual abuser willfully opened himself and even enlisted the power of satan and his minions not knowing that ultimately satan comes to destroy: he will not help you control your mental illness nor the unruly behavior of 3 innocent children! Sadly, my Dad battled mental illness his entire life.

For me it was not the same thing to know what happened to me as it is to become free of the impact it had on my life. The former is exceedingly painful. The latter is freeing. It’s not the same thing decades later to have a seizure disorder of unknown type and 1) have Doctors claim then that it must be psychological, for some kind of personal gain (yeah right, how sick is that?!) vs. 2) the electrical activity of seizures jarring locked-down memories of horrific trauma. Thank the Lord that I did forget such horrific trauma so I could survive, focus as much as I could on living. Years later it was explained to me that I didn’t have a seizure when the abuse occurred so there’s no psychological reason for me to have seizures now. I had flashbacks of really bad things for twenty years before the onset of convulsive episodes eight years ago. Each memory came back to me when the Lord ordained the timing, when I was ready to handle more of the truth. It took time to work though each nasty piece, lay each one at the foot of the Cross, and figure out how to go forth after reclaiming the full picture of a mixed-up, dysfunctional family, a once mixed-up dysfunctional Julie.

I just wish that now that I can see how the Lord used the seizures for some good in reclaiming my past that they would stop already! I still deal with numerous abnormal lab tests and scans that all could be contributing to the convulsive episodes and tics, confirming an organic cause. Years of treatments have alleviated, changed the pattern of, reduced, and some days even stopped episodes. The latest contributing factor is Autonomic Dysfunction. This diagnosis confirms why vagus nerve stimulation techniques have helped me so much, particularly those of the parasympathetic nervous system. It’s no surprise that it is the opposite, sympathetic nervous system that gets revved up when abuse happens and, for example, would have contributed to decades of difficulty falling asleep at night. My mind and body are more calm now in general than ever before. So I guess I can say that these nine years of battling serious illness has become a serendipitous opportunity to free my life from the various things that trauma and the serious illness itself did to me. I have a long rap sheet of medical problems but my spirit is lighter now than ever before. Good things have happened! This is true even though I still have tics or episodes virtually every day. It’s just taking a long time to find the CURE for whatever is their CAUSE. Lord willing, one day I will be healed!

In the book of Genesis, Joseph professes to his brothers that sold him into slavery the following:

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

Genesis 50:20

Joseph’s brothers were jealous of a dream he had shared with them that one day they would serve him even though he was the youngest member of the family at the time. They faked his death! In the end Joseph survived, endured tremendous trials and years later, rose to fame in Egypt as second in command of the nation that saved the lives of many peoples because of his inspired leadership. When his estranged family came calling for help, Joseph ended up saving their lives as well in addition to reconciling with them. All was restored including his relationship with his beloved father who feared he would die if he lost another son. He didn’t. He gained a son he thought was once lost.

My Dad did very bad things at least partially knowingly what he was doing, akin to those of Joseph’s brothers. Then as the Lord showed me the abuse that my dad had suffered, our familial patterns of alcoholism and mental illness, and brought me to a saving relationship with His son, Jesus Christ, I was able to move from hurt and anger to forgiveness. That forgiveness had many layers as more truth came into the light and as I got to see him after TWENTY SEVEN years of estrangement from our family. I still didn’t know back in 2011 what I know now. The serious illness that developed into daily convulsive episodes came at the end of the year 2011 and after my dad had passed away. I cannot go back to my father and ask him about what has been opened up to me most recently. I simply have to trust the Lord’s timing in how all of this came together, put any pain at His Cross and leave it there.

Recently an expert instructed me how the Lord divinely sequences every detail in our lives. My understanding of this sequencing has not been the same in the past as it is now. I may weep in the moment but it doesn’t last very long. I try as best I can to live around this scourge, my thorn in the flesh perhaps. It is my firm belief that our God endorses and redeems everything we endure in this life as we prepare, we mature for our eternity with Him. Nothing that happens in our lives is wasted: not the good, not the bad, not the ugly. Nothing is hidden from our Heavenly Father either. He sees and He grieves for our suffering. He rejoices in our victories! I know that He will not only make all things right and new one day but also bring justice and reward for the faithful. The truth will come into the light. Believe it Gentle Reader! I do. JJ

Pics of my Dad as a boy and with my Mom

Just Breathe

The stress is crushing

Into my chest, my frame in flare

Old issues still wanting to be a friend

Screaming with the new ones, a symphony of suffering.

The stuff of life

Crowds every moment and then

The smart phone dies and hours are sucked up

In this Verizon store, that kiosk, then hours with online tech support.

My checkbook sighs

From neglect then a balancing act

Or nightmare as the expenses of preparation

Smell poorly like the “unscented” shampoo at the dog groomer!

Alas I confess

I have been here before:

A medical trip on the horizon

Brings hope but making it so: invites a nightmare.

For how does one prepare

With a brain on fire and infections too

Each vying for attention in the hours that remain

Before departing to the fabulous Mayo Clinic very soon?

Just breathe little one

The one inside that is afraid

Come to my rest my Jesus calls to my heart

Lay here your worries, your burdens; the time remaining is mine.

How fitting after Valentine’s

When I barely got to see my amazing love

That the Author of love would also come to my rescue

And all I have had to do is let go: let Him add the increase for the rest.

The rest. Hear that!

For the opening of this door

Was ordained for this season in life

The last medical records will arrive today. Go take a nap already JJ.

New Year, New Direction

Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).

Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:

  • Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
  • Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
  • Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.

Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.

So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS!  Yes, let’s do that!

Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.

As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?

You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).

I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!

Hang tight Gentle Reader. We may be headed north really soon! JJ

A Well-Balanced View of Cannibis

Since “high CBD hemp oil” was the most widely read topic in my Hope Beyond blog, I’ve decided to post these helpful resources!

Here is a well-balanced article that includes the definitions of 1) legal high CBD hemp oil (HCBDHO) or cannabis sativa from industrial hemp that I tried over a year ago and 2) medical marijuana.  The two are different.  Versions that are legal in all 50 states have a 3% or less concentration of THC:  the substance that creates the “high” in addition to other medical benefits.  Medical marijuana may only be sold in the United States where it is legal and is of a strain called cannabis indica.

http://www.sophiahi.com/cannabis-crucial-in-lyme-medical-marijuana-and-overcoming-chronic-illness-by-dr-tristin-wallace/

By the way, I did trial the use of HCBDHO for about a month then discontinued it.  While I initially received a reduction in seizure attack episodes, I had to keep increasing the dose to receive these benefits.  As my dose increased to the therapeutic level cited in clinical research, the benefits stopped.  Then I started to have waking and sleeping night terrors!  I suspected that the trace amount of THC in the product (from Bluebird Botanicals), was too much for me.  Sadly, my trial ended.  The owners of Bluebird Botanicals assured me that their product was tested for purity and absence of mold mycotoxins.  They were most gracious with their time in guiding me in the best use of their product.

Flash forward almost 2 years and I have become familiar with the exemplary work and products of another company, Quicksilver Scientific.  Should I desire to try HCBDHO again, here is the source that I would recommend.  The delivery system of liposomal nanoparticles facilitates the absorption of CBD directly into the bloodstream within a minute making it comparable to a medical intravenous infusion!  Quicksilver Scientific requires that you buy Liposomal CBD through a healthcare practitioner; the site has a Practitioner Locator on the home page.  Please contact me for more information locating a practitioner if needed.

CBD1sheet
Available at:

https://www.quicksilverscientific.com/solutions/purx-cbd-Cannabidiol

 

Weary from the road

Christmas chocolate.small

“They say no pain no gain

I say roses are worth the rain!”

Or so the song went that I wrote back then

When “recovery” seemed like something I could attain.

Decades later I realized the wisdom of Robert Hasting’s Station

A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’

Too bad life is often not like that:  the good, the bad, the ugly all take their turn

You never really know what you are going to get when your head lifts from the pillow at dawn.

And so goes my new treatment when things have gotten worse before getting better,

How is this even possible when it appeared the Lord orchestrated these steps to the letter.

Now faith means holding on to that which is unseen for the promise of my Lord’s Day

When the suffering will end, be redeemed for glory whether it comes soon or some other way.

I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–

With love in his eyes, his heart he prayed for healing and more once again like so many times before.

We know our Lord hears us and that we have His will, His heart within our own

I just pray I can hang on this weary road that seems to have gone on just too long.

[Please send chocolate . . . pure unsweetened cocoa butter works best right now.  JJ]

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My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”  Revelation 21:4  Somehow, someway, I am going to make it, Gentle Reader!