Good Day? and Questions Answered

I feel good today.  The last, heck I can’t even remember when it started.  I have to look back at my notes…

From Tuesday around noon until Wednesday evening I was pretty debilitated and writhing in pain, or just plain laughing at my condition.  Take a pick, they all surface intermittently during an event.  I was able to sleep the night, which I find amazing because: 1) I really needed it, and 2) I slept a good part of the day yesterday.

As I move around and gain wakefulness, I do feel my muscles tense, but I’ve gotten use to them doing that.  It’s when they don’t release/relax the problem gets serious.

I have a wealth of thanks to give to my on-line support group.  You guys are amazing.  There are times that I don’t think I could do it without you.  There are key personalities that are by me 24/7, and those people are the rocks on which I lean.  But, what astounds me, is my friends from all walks of my life, that either comment or send me a stray private message, or text, to let me know they are reading this blog.  A few even suggest that it be published.

My motivations for this blog are growing.  In the beginning, it was to provide me a catharsis, and remains so.  My mind is not as healthy as it was and writing it all down helps “release” the pressure, so-to-speak.  Secondly, it was to explain to my friends what was going on with me.  Frankly, I had never heard of “extreme spasticity” before that day in the doctors office and we still don’t know all the implications of it.  We don’t know the “why” or what is causing the spasticity.  Our best guess is genetic, which terrifies me that I may have passed it to my daughters.

However, my motivations are growing.  I have been told by a litany of people to keep writing.  They look forward to these articles because it helps them realize either that their condition is not-so-bad or that they can better understand what someone they know who has chronic pain is going through.  These two reasons amaze and embolden me.  To know that my writings and sufferings are benefiting other people.  I can think of no higher honor.

I can’t name the names, because they are manifold.  I resisted the urge to say “they are legion.”  I haven’t grown that evil, yet :P.  Suffice to say, you are highly appreciated.

I did have a couple of repeated questions that I need to clarify:

  1. Why am I a lock-in?  Even a short ride in a vehicle causes extreme pain.  I believe it is a mixture of a few things.  The restriction of the legs doesn’t help.  The bouncing of the road triggers spasms which really cause pain.  The effort required to get me somewhere, as I can’t drive, someone must take me there.  But, probably the most detrimental reason is the inability to know what condition I’m going to be when I arrive at my destination and how long will my stamina allow me to be there.  Even being vertical in a wheel chair with the forces pulling down on my legs and neck, I have a short expiration before I either get week or feel intense pain.
  2. What is the big deal with the med increases?  The Baclofen increases to my spine must be taken sparingly.  This is a very powerful drug which sedates the spine.  The biggest fear is that a rapid increase could render me a sponge or stop my breathing.  This requires the drug to be increased in small doses.  The drug is administered through a pump which is implanted internally on my abdominal muscles.  There is a catheter from the pump under my fatty layers that goes around the left side of my body that continuously feeds the Baclofen to my spinal fluids.  Currently, this is an even dispersion at 380 mcg/day.  But, once we hit the desired level, then I can track the behavior of the spasticity.  If we detect a pattern, the pump can be programmed to respond to that pattern.  However, that is for later.  Right now, we are just slowly approaching that unknown dosage.  When I get an increase, my spine has to “figure out” how to handle the increase.  There is usually a honeymoon period where things are really good.  The temptation is to do too much (which triggers a spasmodic event).  Then your body adjusts and the ability level decreases.  The resultant reality is that with every increase, the behavior of the disease changes and I have no idea what to expect.  Meditating helps, even more than pain killers.

I am thankful that I was able to write all of this.  My hands are not killing me at the moment.  However, I am going to save more for tomorrow, or in the future, when I can type again.

Thanks all of you for reading, commenting, private messaging me, etc.  Your existence in my life makes it all doable.  I lived most of my life as a loner.  I don’t guess I ever really was.

Thanks for reading,

Jay