Sam's almost there...

Looking even better for tomorrow's day!!! :o)

The Rain of Rest and War…

It’s 10:00 AM, Friday, February 18  

While in our bedroom, if I close my eyes and really focus, I can hear the peaceful sounds of the rain in the trees outside and on the balcony, just outside.  The sounds of water have always been soothing to me, especially storms and thunder showers.  While I was growing up, there was a time when my parents co-owned a boat that was kept on the Delta; we went there for mini-vacations and a few of the summers from my childhood. 

My sister Mindy and I would sleep in the bow of the boat and every night I would go to sleep listening to the sounds of the water lapping or splashing against the hull.  Many of my memories have faded over the years for a variety of reasons, but I’m truly, truly blessed to still be able to remember some of my time on that boat and distinctly remember how much that time meant to me.  Forgive my minor digression of historical perspective, but it relates in the sounds of water and rain and the peace I feel listening to them.  The sounds of rain, a storm, a river, a stream, the ocean, even the wind upon a lake; if I can just focus on these sounds, I can sometimes experience a degree of rest I seldom find tangible.

 

My last communiqué was yesterday while sitting at PT ; CC and I had gone in on time and I waited for my “turn”.  My muscles have been a war zone for  a number of weeks now and I was hopeful that a sort of truce could be negotiated through the massaging and stretching of angered muscles, over the course of my appointment.  That was not to be.

As we were finishing working on my legs, my eyes closed and my face and tongue began to go numb.  These attacks bring with them a more significant degree of fear and panic, because these ones often affect my breathing and swallowing.  Mark called CC into the room and once I heard her voice, though I couldn’t see her, I believed I would be alright, eventually, one way or another, even though fear was taking hold. 

By this time, I had already had 5 potassium tabs (Effer-K+ [each tablet is 25Meq/almost a gram of potassium])before going into the room, an effort to stave off any would-be attacks while in my appointment.  This attack went between complete ragdoll/deadweight and muscle locking, and though my face and tongue were paralyzing, I was still able to swallow with much effort, so CC gave me more Effer-K tabs until the rigidity ceased and then they got me into a office chair and rolled me out to the van.  Every now and then, my eyelids would force open and my eyes seemed to sweep from up/down to left and right, but it was very hard to get them to open, let alone remain open, and even then, my eyes seemed to roll on their own; the only comparison coming to mind is that of a driver of a horse-driven coach that had lost the reins of the horses while in full gallop, and was desperately trying to take back control, being bounced and shifted, to-and-fro with each stride of each horse.  And, once he did finally regain the leads, he was too exhausted to continue in that moment and needed to stop the journey long enough to rest.  I guess that’s kind of long-winded, but it’s actually pretty accurate to my perception; I know the attack didn’t last forever, but it felt like it at the time.  Writing this out is helping me remember what happened; another memory.

Once again, upon arriving home, CC was able to basically carry me into the house and get me into my black chair where I stayed for the next few hours.  After basically stabilizing me, she left and picked up the kids and upon arriving home, she and Missy carried me upstairs and got me into bed, where I stayed for the remainder of the afternoon, evening and night.  I was able to walk short distances by late nighttime, but my legs were frustratingly weak and shortness of breath had returned.

I’ve been hopeful that the recent change in medicines would make a notable difference in my quality of life, and though I’m feeling less depressed as a result (which was one of the targets of the medicine change-up), the pain experiences have not diminished, so like a person with a type of insomnia, my body doesn’t get to completely rest or recycle/rejuvenate, so, in a sense, each day brings another percentile increment of exhaustion.  At least, that’s the view from here.  Even now, it’s hard to focus my thoughts and not just stare at the computer screens while my mind works to convey coherently.  With all of the words in the English language available to me, I shrug my shoulders at the realization that the quote “I feel like I’ve been run-over by a truck” is the most accurate quote for me to choose at the moment.  Not too eloquent, but accurate, I suppose.

 

I must remember and keep fresh to my mind, that I am not in the hospital and I am ambulatory, still, in the midst of this *#@%ing disease and I need to remember that there are MANY, many more who are suffering far more than I, right now as I write and you read.  Your prayers are coveted and your encouraging words uplift me as often as you share them.

Please pray for no hits today.

Peace. 

 

rough tym cant walk. realy

rough tym cant walk. realy weak. prayers.

Tough Update

  

  

I’m encouraged to note that the med modifications appear to be taking a more positive effect, even though we’re only a few days in.

Thank you for your prayers and thoughts, more than you know.

Prayers for increasing strength, perception of a experiencing a better quality of life and continued pain relief and healing in these muscles, so worn.

God brings encouragement.

Until next,

peace.  

Tough

  

  

Well, physical life is pretty hard right now and isn’t letting up, so far.  This will be short and is basically a prayer request for healing and pain control/relief.  We went to see my doctor yesterday to re-evaluate the current pain control and I left hoping for a better quality of life but that is still out of reach, it seems.

it’s a pretty vicious cycle.

 

Spasms are very common-place at the moment (have been for a little over a month now) and I can feel them further inside than just on the skin or the outer layer of muscles.  These ones are more uncomfortable (so to speak) and tend to last longer than the more external ones.

I’m trying to keep myself in balance, but being that I can hear myself gasping at points from the pain, I know CC and the kids can/do too.

Things are just hard right now and expressing this was one of the original intentions of this blog/journal.

So what's the deal been?

Well, obviously it's been quite a while since I have written anything in the blog. Indeed, much has gone on including some travel, birthdays, holiday etc.  It’s also fair to say that my battle with coaster-rolling has increased along with some strange computer issues which I’ve allowed to bog me down to a degree.  I continue to covet your prayers for healing and peace as I take each day, one at a time.  The kids are doing great and CC is her usual incredible self.

From here, keep in mind that I’m dictating the majority of this, so there may be some misspellings and transposed words from time to time.

As per usual I think the easiest way to proceed is to recall the most recent events and work my way backwards. Yesterday,

Friday, began pretty much as most other days have, and that I was mobile and feeling like I wanted to see accomplishments done before I would be unable to do things. As a result of the winter weather that we have been having, the backyard has been littered with leaves and small twigs so I chose to use the leaf blower and get the backyard looking proper. Before anyone rolls their eyes, the reason that we got the leaf blower was so that I could be doing yard work without having to put out a lot of physical effort in the leaf blower has definitely turned out to be a tool that I can use without heavy price, generally speaking. In fact, I did get the backyard looking good and fairly cleaned up without incident. The issue, and yes there was an issue, was that when I move the barbecue back into place, somehow the connection between the regulator and the tank did not remain sealed and thus propane gas began leaking from the tank. Moving the barbecue was the last thing that I did before opening the glass door to the house and leaving it open so that I could move the tools back into the garage and it was during this time that the propane gas found its way into the house and on my return trip from the garage to the backyard I started smelling the gas. Nothing blew up, thankfully, but the problem was I could not identify the smell accurately and I could not tell if it was coming from outside or inside in that the barbecue is normally resident beside the glass door so the gas was in fact outside as well as inside. After beginning to get a little light headed, I felt myself getting confused so I called 911 and told them that I was smelling gas in the house and they instructed me to gather whatever pets I have and go outside away from the house, which I did. After grabbing with my portable oxygen tanks, Annie and I waited outside and waited for the firemen to show up. As luck would have it, CC pulled up just as the fire chief pulled up, and you can imagine her surprise. I'd swear to you that it is nearly impossible for that woman to panic. I explained to the Fire Chief what I had smelled of what was going on and he asked if I needed to be checked out, I told him no, and then I explained what was going on to CC as well. Two or three fire trucks pulled up and quickly went into the house, identified the smell is propane and, I guess, immediately look for the barbecue and located the source of the leak. The firemen brought in a powerful fan and pulled the existing air out of the house and then gave us the all clear to go back inside. The Fire Chief along with another firemen, asked a few times if I wanted to be checked out on site or go to the ER, to which both CC and I expressed our appreciation but declined the offer. Absolutely worthy of note here is that Annie was outside with me with the firemen walking all around and she never barked once. We were most impressed. I was down for the rest of the day, as I was expecting I might be, but I experience no continuing repercussions an hour or so afterwards.

Thursday, I don't remember a whole lot other than feeling weak and poorly and not accomplishing hardly anything at all. My one main accomplishment for Thursday was going to Missy and Joshua's karate class with them, something I have always loved to do. My primary mistake for Thursday was choosing to try and eat something from Panda Express after the karate class with CC and the kids. Not the smartest move, though the price was considerably lighter than it could have been.

Wednesday I went to the dentist to fix a cracked filling on one of my two front teeth, and though I will spare you all the details, the appointment did not go as smoothly as I would have liked. In the course of my dentist appointments since 2007, we have learned to instruct the dentist not to use Novocain and epinephrine together, which means that the numbing shots are just Novocain by itself. Epinephrine is an additive typically used in conjunction with Novocain to lengthen the effects of the numbing agent and is also unknown trigger for HKPP. Without the epinephrine, the numbing agent wears off fairly quickly which is not necessarily a good thing. During the course of my appointment, and though I was using nitrous oxide, I asked the dentist to use a shot with epinephrine so that I wouldn't keep getting numbing shots through the course of the rest of the appointment. Within seconds of the numbing shots with the epinephrine, spasms began at the end of the appointment drew nigh. Long story shorter, I go back in two weeks for two permanent crowns to replace my two front teeth. Also worthy of note is that my dentist called yesterday morning to ask how I was doing and see if I was all right; I was and am impressed with him. As is probably obvious, I was down for the rest of Wednesday.
I'm not remembering much of Tuesday or Monday or daily occurrences before that, so that's probably it for the play-by-play.
Looking backwards, the kids had the week of Thanksgiving off so CC and I had planned a trip down to Southern California, to stay with my younger brother Scott Shuford and his family for the week and we drove back Thanksgiving Eve to Santa Barbara and then on Thanksgiving day we drove from Santa Barbara back Orangevale. The Saturday before Thanksgiving, Scotty put together a small celebration for my birthday and I got to see some beloved friends for a while that day. Another of my closest brothers, Harry, was able to attend the party and also spend the night which did my heart good.


Garrett Graham was also there and I haven't seen him since Scotty's college days at San Jose State.
 

The following morning, Sunday, we went to church and then lunch with Harry as well.


Tres amigos


One of a kind; Uncle Harry.


Scotty and Kyle
  

Spent part of the afternoon with Becca and her little one.
  

Family portrait at the Shuford’s.
 

Hangin’ with Batman on Hollywood Blvd.
 

…and a Imperial Trooper, but he wanted money for us to take a pic with him, so…yeah.


Thanksgiving morning in Santa Barbara and we couldn’t leave the  Coast without letting the kids get their feet wet…
 

Daddy and daughter


Missy and Joshua
 

Santa Barbara Pier
 

The beach-


Tired?


…Yeah, tired.  Notice that Joshua’s right hand is in mid-DS mode on his Nintendo. :o)  L.A. traffic will do it every time.


So, I hope this will do as an update.  I’ll have some more pics to post, but for now, this suffices.
-w




.

28 Years Ago

28 Years ago this night, my dearest friend and "big brother", Ben Clanton was killed/murdered.
He exemplified how to love people.
I know he's with his Father, but he has been missed ever since.
Peace-

This is worth the 4 minutes +

Click this link and take a view...
http://www.infowars.com/steve-wynn-takes-on-washington

It's Monday Night, Do You Know Where Your Attitude Is?

 

 

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.