Difficulties

 

It’s been quite a while since I posted and, unfortunately, that has been due to daily attacks for the past 12 or so days.  I did get a break for about 48 hours this past week on Wednesday and Thursday, but Friday’s attack was savage and hit me while I was home alone, again.  This hit was harder because both my legs began to experience muscle spasms AND cramping simultaneously, confining me to my black chair.  CC was at Joshy’s school when it hit and she came home in a manner of minutes, but the nastiness had locked on and began to claim other muscle groups as I began to battle the fear of not knowing what was coming next and knowing I was by myself and that Annie was not crated which would have been problematic had I called 911.  The attack lasted for 45 minutes to an hour; brutal cramping in my calves and abdomen , spasms eventually everywhere else and lockjaw to top it off.  It’s been a very long time since an attack brought tears…

Today I spent in bed for nearly the whole day and could only walk with the use of the walker, and even that was a snail’s pace.  I demanded of myself to go and up and down the stairs a few times in order to push oxygen back into the muscles, knowing full well that it would be painful and slow, but I did it…granted, a couple times I needed CC under one arm to make, but I STILL made it.

I have NO idea what set it off, no clue at all.  Those attacks are the ones I fear the most, I guess, because when the attack begins, I normally run my immediate history back through my mind and can normally see the trigger in hind sight, but with these attacks, it becomes an endless mental search that eventually exhausts me from the inside out.

You know, now that I’m thinking about it, those of you who read this via Facebook should know that these posts or “notes” are coming in directly from my blog entries at http://theaudiopilotsblog.blogspot.com

I’m considering closing the link between my blog and Facebook because much of what I’m sharing is exceptionally personal and Facebook by design, is not and I’m feeling like I’m sharing too much to too many people in such a general manner.  I’m thinking that if anyone wants to read the blog that they can simply go to the blog and check it out instead of me linking it to Facebook and leaving it “out in the open”, so to speak, for the casual Facebook reader.  My intention is to use this post as an open invitation to anyone who is interested in my life or my terminal joust with this rare disease, to go to my blog, http://theaudiopilotsblog.blogspot.com and read all you want and have access to all the previous blog entries as well some pics that are not on my Facebook profile.

Well, that’s it for now.  Praying for a better tomorrow/today (Sunday).  peace-