Posted on February 14, 2020
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.
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.
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.
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.
Jay C. “Jazzy J” Theriot