Dance with Death – update 1

It is almost twenty-four hours since my second 10 microgram increase. I am now at 310 mcg/day. I am able to use my legs slightly. I just walked for about 15 minutes and my left leg has become knotted. But, I walked for a short while, where walking was impossible before. I’m now back in the chair.

So, the game is afoot. Will I reach an acceptable level of functionality prior to maxing out the Intrathecal Baclofen, or will I stop breathing? Which will come first? That is the question of a lifetime for me.

Due to the reaction ITB has with high CO2 levels, sleeping without my CPAP could be a fatal event. When the level of Baclofen gets high enough, it will seep up my spine, making its way to the medula oblongata. If the CO2 is too high, the body goes into shutdown mode and I stop breathing. This is what happened on September 7th, 2017. That day I felt the presence and the warmth of the Trinity. I can never forget them. I also felt the terror of Hell. That, too, I will never forget.

This is the game we are playing: raising the level of the one drug that can help me without killing me. My closest family members have been brought in on the discussion. They have seen me writhe in pain. I think they understand the foundations of my decision.

I see this decision no harder than the decision to get a heart transplant, just with a slower uptake. It will take months to finish the procedure. The goal is reduced destruction of muscles and the cause of pain.

With the knowledge that the Trinity is watching and carrying me, I move forward. I no longer fear death. I only fear losing hope.

Current Thoughts on Medical Cannabis

There is one soldier on the horizon that may provide another weapon in my arsenal. Medical Cannabis. I have railed against using THC my entire life. Everyone around me suggests I use it. Many even suggesting I use the drug now, even prior to it being legal. I believe they are right, but I sit on my principles.

I long said that when a man loses everything, if he be of integrity, he will still have his principles, whatever they are. How do you change your principles when they are incorrect from the beginning?

To those of you that are reading this article and have suggested that I use it now, I am declaring that you are correct and I am wrong. However, I just don’t know how I can get to where you are.

I will likely be prescribed edible Cannabis when it becomes available. All the research I have seen on it indicates it will eliminate much of what is destroying my muscles. I pray that it does what we hope it does. The decision is made, I will take it when I can. Frankly, if offered now, I would likely take it. The constant agony is warranting a subjugation of my long-standing and seemingly wrongly-held principles.

Current State of my Body

Sore muscles! I think I have injured about 80% of my muscles. Additionally strange is my breastbone. I really think I pulled the muscles in my chest hard enough to damage where they attach to my sternum. It hurts to the touch and when I breathe. Yes, it hurts all the time.

I have a considerable amount of healing to do. I have begun a high-protein diet. I’m trying to ingest about 75 g of protein a day, along with creatine monohydrate and BCAAs. I have found them to be key in muscle repair. Additionally, I strongly suspect the BCAAs are responsible for eliminating a large portion of my spasms. Thank God.

Current State of Mentality

Emotionally exhausted. I don’t want to think anymore and I’m tired of saying things like “I hurt”. I’m tired of screaming alone. The physical pain is extreme. I no longer remember what it is to have a day without pain above level 8. Every location of my being is at a minimum of level 4 around the clock. People that love me ask before they hug me because of the pain. I’ve gotten so use to the pain and so desirous of the hug I forego the increase in pain and take the hug. Shaking hands suck. If someone squeezes, it feels like my hands are going to burst open like a squashed grape.

Every motion, movement or task must be thought out in its entirety prior to beginning less I get trapped. This includes going to the restroom. Mundane activities have become incredibly complex and make me mentally weary trying to accomplish them. Showering/Bathing is an operation. I used to shower twice a day without a thought. I performed these without being thankful for the mobility that was needed to execute them effortlessly and painlessly. Mundane activities have become traumatic events.

Current State of Spirituality

Stronger than ever. I am emboldened by the fact that my productions for St. Matthew’s is developing a global audience. I will never know who these people are that are tuning in around the globe, but they are there. I can only pray they are sharing in the same Grace the Episcopal Church has given me. My faith has taken me to the only comfortable place I can be: in God’s embrace.

It is there that I plan on remaining for as long as He will have me. I pray He will continue to give me the strength and determination to continue to serve Him by serving His flock.

In Christ!

Jay C. Theriot

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