Comin’ Home, Lynyrd Skynyrd

A fantastic, but hated, English Composition teacher of mine one submitted her belief that you can’t write that something is unexplainable and then write about it. I think that is why I quit writing about a year or so ago. What I was writing about became unexplainable.

I’ll simply say, the pain of my muscles and nerves have not let up. The levels still roller-coaster, reaching heights previously unpredictable. However, on another note, the situation has educated me a bit, I think.

I affirm this is genetic and that my father had it and at least one of my daughters are developing it. Not one of my siblings believe me. Heck, they don’t believe that I have anything more than osteoarthritis. The Veterans Administration has reached out to me and in June I will be admitted to a clinic specially for those who have ALS (Lou Gehrig’s Disease). While it is not believed that I actually have Lou Gehrig’s, the VA feels that I would benefit greatly from the group of specialists they have treating the group. When they told me this, I cried. My wife and I will no longer be forced to lead this fight blindly. I care less about my life, as it is already destroyed. I don’t want this to affect my children. We must identify this and build a bulk of information so they have a fighting chance.

Lynyrd Skynyd has a song, “Comin’ Home,” with prophetic lyrics, as many of their songs do. 

It’s been so long since I’ve been gone
Another day might be too long for me
Traveling around I’ve had my fill
Of broken dreams and dirty deals

A concrete jungle surrounding me
Many nights I’ve slept out in the streets
I paid my dues and I changed my style
Seen hard times, all over now
 
I want to come home. It’s been so long since I’ve been away
And please, don’t blame me ’cause I’ve tried
I’ll be coming home soon to your love, to stay
I miss old friends that I once had
 
Times ain’t changed and I’ll be glad when I go home
I don’t know why the thought came to me
But why I’m here I really can’t see, and now
I want to come home. It’s been so long since I’ve been away
 
And please, don’t blame me ’cause I’ve tried
I’ll be coming home soon to your love, to stay
Coming…

I take the meaning of “Home” to mean the old times before their fame and isolation from their old lives. That is where I am. I want to “go home” to a time where I could say I loved my life, where my life loved me in return.

Thanks for reading,

Jay C. Theriot

PS: I am not suicidal, just weary of the path I am on.

 

World Health Organization Announces New Global Response to COVID-19 Funded in Part by the Bill and Melinda Gates Foundation

I just participated in a webinar with other global journalists which was an announcement by the World Health Organization (WHO) to announce a global coordinated response to COVID-19. The effort is funded in part by the Bill and Melinda Gates Foundation. If I have the finances right, it is an $8B US effort, and they are still $6B US shy.  There will be a global pledging event on May 4, 2020.

The source of this data is WHO.int itself.

Although US Citizens (Bill and Melinda Gates) are the largest financiers of the event, no US government scientists are visibly taking part in the effort.

With the President of the US pulling funding for the WHO and his continued attacks on the hard sciences, I fear the US is going to proceed into an information black-hole.

In other tyrannical governments, where free speech and hard sciences have been attacked, access to the global communication system, we know as the Internet, kept the information flowing into those countries.

I never expected that the US would have a need to tap into other countries organizations for hard-scientific information.

However, I would warn against listening to anything stated by the US President, as he has recently touted the beneficial effects of an untested drug. And, even more recently, suggested injecting cleaner to fight the virus. This is known to cause fatalities.

I hope you join me in supporting the WHO in its global effort of scientists to get hard information on this disease and to defeat it.

I’m sure that more information concerning the global response will be made public through other responsible media outlets.

Thanks for reading,

Jay C. Theriot

20200214 – Update on the Journey

My apologies for not posting updates.  I was having trouble both physically and psychologically. I began to see the posts as massive whining sessions, and I hated reading them.  The story was growing stagnant. Sadly, it still is.

Over the several months since my last update, few things have changed.  A lot of work has been done, but… we seem to be in stasis.

The neuro-muscular disorder is progressing.  I’m slowly loosing my ability to do things. Physically, the acuity of my hands and other parts of my body are failing.  Typing is becoming a chore, on a good day. On a regular day, it feels like I have to look at the keys to make sure I am hitting the correct ones. My hands ache from the compressed joints, as do the rest of my body.

Double-edged Swords

We have worked on discovery. I have seen a cardiologist, endocrinologist, ENT and a rheumatologist. My cardiovascular system is strong, as is my endocrine and my skeletal systems.  My sinus and breathing apparatus is screwed, but operable.  I working on clearance for the operation.

Although it would seem like the determinations of the doctors that those systems are great sounds positive, the other side is that all my issues are due to my neurological system. Further, this means my symptoms will increase over time with no treatment and no cure. With a slow-progressive neuro-muscular disorder, I will outlive the disease.  Means, when I finally die, I may not even be able to control my muscles and instinctive reactions.

I have a difficult time going places. People constantly want to touch me. The touch triggers spasms that take me hours to get to quit. Then, it takes days to recover from the damage.

My oxygen levels stay around 93-95% due to my shallow breathing. When I cycle low, it drops to the upper 80s. I keep Modafinil to try to keep me awake and speed things up when that happens.

THC seems to help put a governor on the spasms.  Instead of a jerk or a tearing pull, the muscles thump when I’m on THC.  The downside is the medication is expensive and I stay a little stoned most of the time. But, it works.

Hyperhidrosis and my thermal issues seem to be here to stay. The endocrinologist echoed what my neurologist stated. She said that my thermal issues all can be caused by my neurological system. I was hoping my thyroid had issues so we could fix it.

The VA is helping. They are going to get a second opinion on the neurological findings. I hoping they find anything.  Right now the only answer we have is that I have a slow-progressive idiopathic neuro-muscular disorder affecting my sensory nerves, my sympathetic system and my skeletal nerves. My pain levels are high. I never drop below four. I don’t take the opiates until the pain becomes unbearable in the afternoons and the evenings.

Biggest Fear

My biggest fear is of loosing my mind. I get frustrated with my body. I sometimes feel like I’m in a constant free-fall.  But, that doesn’t compare to the limits that are being put on my cognitive abilities. I have trouble thinking through problems. Things that I could do instantly before, now take me hours. I can feel my mind fade.

I am fighting the progression best I can, but I feel like I’m in a loosing battle. My children have joined my battle. They listen and share possible solutions to distinct problems with me. I am proud to have them.

A van with a ramp is on its way. The beast is stuck in a succession, but will be here soon. Our idea is to take it to the Mississippi Gulf Coast as often as we can. The wind on the seashore blows away my issues with the hyperhidrosis and makes my thermal issues minimized. The beach is nice.

(Re)organization

I’m working on reorganizing and reducing my digital footprint.  Keeping up with things is becoming an issue. I need to back off. WordPress introduced a method of managing many websites under one roof.  I’m working to pull all my topical sites into one location for easier management.

I have resumed my activities in the retro-computing realm.  I’m a beta-tester for AmiKit, a SysOp of a couple of networked Commodore 64 BBSes and I’m working on converting BASIC programs from early issues of the LoadSTAR Commodore 64/128 digital magazine from the late 80s and early 90s.

I’m also working on a medical resource guide for a tri-parish area in conjunction with the Chamber of Commerce, Terrebonne Economic Development Authority and Louisiana Workforce Commission. We should have it releasable by the end of Q1, if my body will hold up. This was a journey that I don’t wish to take again. I volunteered my programming services.  The development has been slow.  I can’t normally sit to work and think at the same time. Working on a timeline doesn’t work.

I’ve pulled back from my support of my church.  I can no longer keep up with the activities.  All my services are at a minimum and I’m working to reduce them even farther. I want to be selfish and do what I want to do with the very little “able” time I have each day.

Well, I guess that is about it for now. The journey continues. I will fight to the last.

God Bless,

Jay C. “Jazzy J” Theriot

A Pause for Reconstruction

I must ask for a pause as I am in the very slow process of reconstructing all my material to a new and more easily manageable, and hopefully more understandable format.

Things are going to be choppy for a little while as I combine some and destroy others. Reconstruction is going to be fun.

Jay C. Theriot

So What Now, 2020?

Well, I have some ideas I would like to put into reality for this year. There are no advocacy groups on social media for idiopathic neuro-muscular disorder.  There are advocacy groups for named disorders, but none for the unamed varieties. I feel there is a big grooup of people out there that would love to have a place to converse about  their issues.

The group will be heavily moderated. As, if someone attacks someone, they will be gone. It will be a haven for those that need to speak of their issues. I have guidelines to write before I make the group publicly available.  My hands don’t always like to type. My voice is not always conducive to voice recognition. Thus, the writing of the needed guidelines will be my biggest hurdle. Not because of lack of direction, but be the physical logistics behind making said guidelines.

I don’t wish to speak of my issues any longer unless it is to help someone else.  This will be a challenge for me as many times, my issues are all that I have. But, my hypothesis is that communing with others in similar situations, we will begin to share a camaraderie transcending our issues.

We will see out that goes.

Another idea I would like to bring into reality is a local advocacy for physical accommodations in the infrastructure of my home parish of Terrebonne. The structural accommodations for the mobility impaired are severely lacking. This will require me to address the parish government and exercise diplomacy to sway their ideas to including mobility issues as default in their machinations.

A lofty goal. Jay as advocate for the voiceless. Going to be a rough goal to accomplish, but it is time to try.

God bless us, all.

Jay C. Theriot

Realization that Life is Status Quo

A few days ago, my cage was rattled.  I was attempting to stop a naive and innocent event from causing my youngest to cry. My attempt was met with my classification as “shameful” and “pitiful.” Followed by this classification, I was given a dissertation from another member of this grouping. The subject of this dissertation was how evil I was. I would say that I have since severed all ties with these people, but my situation is more than that. I had put up my defenses years ago and started lowering them about 8 months ago, thinking a potential reconciliation was possible.

I no longer think that is possible.  For some reason, unbeknownst to me, I have completely angered this faction.  What ever I did, dates prior to my date of confinement. Consequently, I see the last few days as a return to the status quo.

I am no angel. That is a fact. However, am I not the only one to share blame. Frankly, I don’t know what blame there needs to be shared. They may know what started their hatred of me.  The signatory event is lost to me. I want to reiterate, that I am no angel. But, I’m lost at what actions I could have committed that would have remanded me as ostracized. There I am, and will remain. I won’t let my guard down again.

Three years into this disorder being critical and we have limited answers.  My daily routine includes about 2 hours during which time my pain level is below 7/10. I don’t have time to play. I have come to accept and understand continued intense and extensive pain. It milks your mind and your soul. If I seem that I regard myself “Godly” it is because I have surrendered myself to my Savior. There can be no other way. It definitely doesn’t mean I am sinless. It means I am sinful and looking for forgiveness from the only One that can grant it. I seek solace in His cloak.

I don’t know what I am doing, nor do I know where I am going.  But He walks with me when it is dark, and light. For me, it is easier to see Him when it is dark. When it is light, I try to recognize His gifts in the birds, insects and flora He has granted me access to. He gives me peace.

No, I am a sinner, and I need His light in my life, always.

In His Name,

Jay C. Theriot

Severing Ties

I think my shell is hardening.  I am in a peace right now.

I have my first visit with an endocrinologist this Wednesday.  We will be looking for pheochromocytomas.  Basically, they are tumors that grow inside of adrenal glands.  I’ve tried to research them, but the information is way above my head.  All I can understand, is that they screw a lot of things up.

My spine is growing spondylosis — bone spurs.  Some are causing stenosis.  We can only assume the cause to be the constant pulling of the muscles on the vertebrae. I can tell you my pain levels have increased and are near constant.

My car is paid for, and silent.  I no longer have driving privileges.  But, this is more of a blessing.  I don’t have to do a self-assessment before I get into an auto.  I don’t have to worry about what to do if I start having spasms. The result is that I am definitely stranded in my own home.  My wife is making is as lovely as possible.  The woman is an angel.  I think she’s earning her wings long before the end.

The relationship with my blood relatives has be severed. I am not an innocent and do not claim to be. Their slings and arrows will no longer touch me.  I am taking steps to finish severing ties with them electronically.  I wish I could protect my kids.  One of them is convinced that they are being stalked by them and the efforts are making her very uncomfortable.

It is interesting in that their public personae is that of community organizers.  One has won Parish-level “Inspirational” awards. The rest are artists and have other roles in the community.  But, the filth that are in their souls persist.  I pray for them.

Instead of trying to understand this disability, they shun it and condemn it.

It is part of me.  I have accepted it as what I have to deal with.

God help them in their paths.

Jay C. Theriot

Russian Active Measures Campaigns And Interference In The 2016 U.S. Election

Russian Active Measures Campaigns And Interference In The 2016 U.S. Election – Volumes 1 and 2 from the US Senate Select Committee on Intelligence.

I’ve uploaded PDFs of each of the volumes to my server.  You can access them here:

Russian Active Measures campaigns and Interference in the 2016 US Election, by the US Senate Select Committee on Intelligence, Volume 1

Russian Active Measures campaigns and Interference in the 2016 US Election, by the US Senate Select Committee on Intelligence, Volume 2

I’ve not read them in their entirety, as of yet.  But, the articles from places like The Most Important Document You May Ever Read, from Roll Call indicates that a lot of things that have made me pound my fists about social media are dead on.

If my body allows me, I wish to write a series of articles on this matter.

This is not about the DNC or the GOP.  It’s about our Democracy and our willingness to keep it.

Note, the report is from the Senate, which is a Republican majority branch, and the data suggests that the Russians helped the Republican President.  The report also talks about additional countries targeting the American people through Social Media.

Good Reading,

Jay C. Theriot

201910106 – Update, kinda

What’s happening with me?

I want to make a claim that we have got the spasms under control.  They still occur, but differently.  In the past, the spasms would be grave and rip muscles in a lightning strike.  Now, the spasms occur more slowly.  My muscles start to pull. My “markers” are different.  I notice that if my cheek muscles get tight, I’d better be taking some additional meds and rest.

My spinal column seems to be getting affected. The constant tight muscles are causing narrowing, osteophytes, and a number of other issues with my skeleton as a whole.  My neurological system is taking a hit as nerves are being compressed.

My medical treatment is more of palliative care, and the injections I’m receiving are focused on deadening nerves or relaxing muscles in a target fashion.

My hands occasionally are capable of typing.  However, any static motion causes cramps and spasms.

To be able to do anything, my body must keep moving.

Suspending my head frequently causing painful issues with my neck.  I’m not sure where that is going.  The issue is relatively new and documented on my various medical images generated by MRI or X-Rays.  Likewise, for my lower back.

Fear, is becoming a hurdle.  As staying out of my comfort zone for an extended period of time will drop me and cause days of recuperation if I screw up, I am beginning to dread not being home. Not being next to where I can chill my body or get to my “safe zones” quickly, really is brewing fear. I must break these ideas and overcome them. My method of going out of my home includes taking copious amounts of medication.  Seeing the world stoned, drugged or whatever term you choose to use, is my only recourse of action to be able to escape Eden.

I must do it now. As, I submit this article, I’m going get ready to go to Mass.  My wife is serving on the Altar.  I don’t want to go without her being next to me, but I have to do this for myself. To overcome the fear of pain.

Wish me luck.

In Christ’s name,
Jay C. Theriot

Working With an Intern

I’m working, albeit very slowly, with an intern on an online database for a tri-parish community.  In my better days, the the project would have taken me about a week to produce.  However, my inability to mentally focus an sit long enough to do the work myself has crippled the project.

The project is relatively simple: design a database and interfaces to hold medical resources for the local parishes.  The purpose is so that someone looking for a medical specialty will be able to easily locate a medical professional using simple on-line searches.

Working with an intern is interesting. Although, the intern is finishing up a computer science degree, there really is no fusion of skills in the educational curriculum.  To produce the database, the languages needed include HTML, CSS, PHP and MySQL.  Additionally, knowledge of the CMS, WordPress, is needed, not to mention patience with someone that was a horrible teacher in the past, now rarely shows up to class.

Still, we are making headway in the project.  I look forward to the system going on line.

I especially enjoy working with my intern. Watching his eyes light up when he “gets” what is being done, is priceless.

Thanks,

Jay C. Theriot