Up Walking, Brewing Coffee, Situation Update and Summary (for those joining in)

I must be feeling better.  The main thought in my head is: “man, that coffee pot is slow.”

I did it to the left side of my body with this last series of blows, again.  I believe the acute phase has ended.  I slept well (until 3 am).  The only residuals I feel are soreness in my neck, left shoulder and leg.  My typing sucks and my eyes are not tracking properly.  I think that I may have tweaked an orbital muscle of my left eye.  I’m thinking of getting that eye-patch to finish the pirate look.

I’ve picked up some readers and I think it’s time for a re-examination of my condition.

The symptoms I am fighting is “Extreme Spasticity.”  This is a description of a condition, not a diagnosis.  Spasticity is common in CP, MS, ALS (Lou Gehrig’s) and other diseases.  They’ve pretty much all been eliminated in my case and my doctor thinks this may be a genetic freak accident of sorts.

I had a Intrathacel Baclofen pump implanted in my body on June 28th.  Since then, I’ve been on a roller coaster.   Prior to the implantation, I was in pain 24/7 and on major oral medications.  Since the implantation, the oral meds have been decreased as the ITB has been increased on a weekly basis.  With each ITB increase, my world changes.  I went from having extreme spasticity 24/7 to every 2-3 days eventually to where we are now.  I’m having spastic events every 4-5 days that are disruptive to say the lease, lasting from 24-36 hours and often leaving me with pulled/strained muscles in various places, all over my body.  For simplicity, I’m calling the massive spastic events “the acute phase.”

In the chronic phase, that is, every other part of my universe that is not in the acute phase, I generally am recovering from the blows left from the acute phase.  Additionally, I am mobility impaired at varying degrees, depending on the time of day and activity attempted.  I can go from walking without a cane to being bound to a wheelchair in minutes.  My muscles do not release.  If I do anything that requires me to hold a position (wrapping my fingers around a pencil, standing up, sitting at a dinner table) my muscles go rigid and the lactic acid builds up…causing considerable pain.

My wife and I have found that when in the chronic phase, massage can extend my comfort levels and time when I am able to do things.

In the acute phase, massage can either feel good, or inflict extreme pain, depending on the nature of the cycle.

I do not drive.  I cannot drive an electric wheel chair.  Brushing my teeth is problematic, as is shaving, bathing and pretty much every aspect of mundane life.  Everything is a problem to solve.  It is easier for me to access the commode in the master bath, but I have to cross carpeting with my wheelchair.  So the problem becomes:  “Do I have enough energy to go do what I need to do in the master bath AND make it back across the carpet?”  If I miss calculate, I take a nap in my chair on the carpet until my strength builds up.  That is an example of the decision matrix I go through for everything.

Eating lunch is a challenge, but easy-to-fix meals are making life easier.

In the mental/psychological area, I took a hit when I had to accept that my career was over and that I needed to set new expectations for life.  I have accepted my limitations and will consider any remission a gift from God.  I had a falling out with many of my family.  This was mainly due to my inability to get them to understand the veracity of my situation, and my expectations that they would be able to understand was extraordinarily high.  I was wrong.  I publicly had a falling out with them on social media.  To protect them, as well as myself, I have discontinued contact with them.  I still converse with my mother frequently, but I can’t handle my siblings.

I am working on an appropriate apology that both expresses my regret for how I executed the break, but not why I executed the break.  I am finding it difficult.  There is much anger there as I feel that they should be here experiencing this with me and they are not.  However, that is a bit much to expect, as even I don’t fully understand what is happening to my body. I can’t expect anyone else to.

I think that pretty much is a current state of affairs.

Thanks for reading,

Jay