As is usually the case, much time has passed since I last posted anything of personal substance and I find myself now having to remember what's gone on over the past several weeks, which is proving to be problematic at best.
I think in general, I've had some really good days, days that have allowed me much more physical freedom than has been, and typically would be, dictated by the disease. Of course, these really good days are seen to be balanced against days where the term "Not so good" would be a relative understatement.
Given how much time has passed since I last brought you up to date, I'll begin with today and work my way backwards as best I can, trying to cover all of the really cool and good things as well as keeping an account of the un-fun and troublesome things. Now with all that being said, I want to clarify that this posting is being done verbally through Dragon NaturallySpeaking software instead of being typed, so you may find grammatical or punctuation errors as well as occasional wrong words so please, just bear with me.
Overall, today, Monday, September 6, 2010 has not been a bad day though I have been struggling physically for the better part of the day. We all slept in this morning with CC and I getting up more in the 930 range in the kids later than that. The primary goal for the day, for me anyway, was to go after the ever mutating "need to get done" list and being that I wanted to get certain things cleaned, using one of our vacuums was the logical route to begin with. The problem was that I found there to be a buildup of dust and hair clogging in the vacuums wind tunnel which required me to briefly disassemble it and clean it out before putting it back together and begin its use. It was during this time that I made the poor decision to remain standing yet been over to a degree in order to clean and manipulate the vacuum that was being operated on. It had only been a matter of 5 to 10 minutes that I took to accomplish the task of cleaning out the vacuum, but during that time I had locked my knees in order to give myself a degree of better balance without tiring out my legs. The issue came when it was time for me to stand up straight and move my legs only to find that he standing up straight took four times longer than it should have and the muscles in my legs and knees had clearly declined cooperation about the time that I was determining how badly it was going to hurt when I fell forward onto the pavement I heard the glass door slide open behind me and out came Joshua asking if I was all right, with his mother right on his heels, saving me from what would have undoubtedly been an embarrassing yet painful private meeting between the patio cement and my face. This all took place around noon. CC helped me walk inside and get into my black chair where I stayed for 45 minutes to an hour, hoping that my leg in the muscles would forgive and forget and allow me to move on with my day. This was not to be. In fact, it is 7:31 PM right now and I'm still having to walk with the use of two canes and have only been able to actually walk now for the last 2 1/2 hours. We will see how the night ends, but my guess is that I'm going to be horizontal before too long.
Yesterday was Sunday, September 5, 2010 and for the life of me right now, I can't remember much of any particulars from the day, except that I don't believe that I took any hits. Though my right arm was still painful, there was a portion of the day where I was able to play guitar for a little while and actually learn some . 38 Special songs that I've always wanted to learn! Joshy worked on homework while CC and Missy had a “girls day out" for the day and evening which was really, really nice for them to be able to do.
Prior to yesterday, was Saturday, September 4, 2010 and we left Annie here at the house while we drove down to San Carlos to celebrate my sister Mindy’s 50th birthday party, taking place at her house. I'm not sure how far we had traveled en route to the party before I took a major hit of paralysis that lasted hours, not minutes and made for a terribly embarrassing entrance into what was a very jovial and joy filled home, full of family and close friends. I know that I have failed in the past in trying to describe how it feels to be carried by one or two people and not be able to see them or speak to them but hear them as if you were looking them in the face while they spoke to you. It's a curious experience in one way and it's maddening in many others. One thing you do become very, very adept and skilled at is the ability to perceive stress, sadness, anxiousness, happiness and other emotions using only your senses of hearing and touch. Over the last four years I've really come to believe that the blind often see far more than those who are limited to their sight. Add to this that my right arm/elbow was extremely weak and very painful and it made for very slow and deliberate movements, but only when needed. Anyway, I digress. Judging by the smile on my sister's face, I believe that the party was a resounding success and I know from my perspective that I really enjoyed my time and being able to speak with, and hang with some of those are most dear to me. By 9:30 PM that night, we were back on the road on our way home to our puppy dog who felt left behind and neglected and to our house that looked left behind and neglected... sink full of dishes, full trash cans, overflowing laundry; you get the picture.
Prior to Saturday, was a pretty full day on Friday of which only the midmorning hours were productive on my end. Sometime, very shortly after lunch, I had been eating a small bag of carrots while sitting at the counter in the dining room/kitchen and I realized that I was beginning to fade, so my goal was to go around the counter into the kitchen and grabbed a plastic cup, fill it with water and put Effor-K tab indent and get to my black chair in the living room. I believe I made it to the end of the counter when I realized I had a very brief option of leaning against and then sliding down a wall versus walking a couple more steps and then falling in an unknown direction, so I took the sliding option and wound up on the floor way between the kitchen and the living room. I was able to get my cell phone out and speed dial CC before gravity bullied me all the way to the ground. I have no idea how long I laid on the floor until CC came home, still with a car load of kids who needed to be dropped off at their respective homes. For the first time in a very long time, I had considered calling 911 but being that I was home alone and that Annie was not crated, I didn't know how that would work out especially being that she becomes very anxious and defensive when I am experiencing an attack or hurt. I guess I have to make some phone calls to the local fire department to find out what they would suggest regarding something like this, should it happen in the future...
Once CC and the kids got home, they crated Annie and brought over an next door neighbor who helped CC lift me off the ground and get me into my black chair. I remained nearly fully paralyzed for the better part of the day, which sucked. Unfortunately, either during the slide/fall or my battle with gravity once I was on the ground, my right elbow and arm became very painful and weak and I was unable to bear weight on my right side until today.
My recollection of Thursday, September 2, 2010 was getting up in the morning and taking my chair and getting Annie out for a walk before going with CC to our PT appointment that morning. Being that CC and I go together on Thursdays to physical therapy, CC is now usually the first one called in so that she is able to be taken care of before I am called into a room, just in case things go south with me so she doesn't miss out on her appointment. Indeed, this was a good decision on this particular Thursday because I only made it partway through the muscle massage and stretching when I could feel an attack beginning and me fading. We made it home without incident but it seems that the walk from the Van into the house was the very last walking that I would do for the rest of the day, in that I went into full paralysis while in my black chair and later that afternoon had to be helped up stairs by both CC and Missy who helped me get into bed for the night.
I'm not sure why my number came up for so many attacks in so many straight days, but we do think that a contributing factor to Thursday's attack which began at the PT office was partly due to my not having consumed enough potassium before arriving for my appointment as well as having expended energy in taking Annie out for a walk prior to the appointment. As for Friday's hit, my only clue, accurate or not, was that I ate a snack bag of sliced carrot sticks. Carrots have not been a trigger in the past but that means nothing to the future. Saturday's attack while riding down to the Bay Area was also preceded by me eating sliced carrots... so for now, no more carrots.
So, that's the best that I can remember for now. Unquestionably, there is certainly much more to share but before I begin to try and do that, I need to collect my thoughts and recollections so that what I share makes sense.
God willing, there is much music on the horizon... it is my hope and prayer to be able to be a part of it.
That’ll be it for now... peace.
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