The Audio Pilot's Blog

Out for errands

2011-12-05T13:21:00.001-08:00

Lunch at Red Robbin with Erik and Annie...2 cool.

The Thunderhead Chronicles - 11/11/11

2011-11-11T23:40:00.000-08:00

11-11-11

It does appear that the events of the past few weeks have been meandering their way through the different communication lines, and though I was not trying to keep anybody in the dark, I get very uncomfortable (now) perceiving myself as whining or complaining though I realize that it's probably just my perception. Blah blah blah.

Yesterday situation was, that in the late morning my blood pressure begin to spike and refused to come back down. I spent six or seven hours in the ER with CC at my side and a blood pressure averaging 200 – 220/95 – 110, or thereabouts. To clarify, those were the numbers that it would spike into; three different doctors were alternating taking times coming in and trying to discern what would work to not only bring my blood pressure down the keep it down. We ended up having an excellent nurse (which is/was a gift from God) and the final Dr. that I had was excellent, and ended up discharging me with a prescription for a fast acting blood pressure med that we can use should the situation occur again. Unfortunately, I have similar issues on Wednesday but I didn't call 911 and the blood pressure eventually lowered itself into a range that we were less concerned about, but that is why we went ahead and called 911 yesterday and went in, because it was the second day in a row.

As I'm dictating this into the computer, my nephew Erik sits behind me and playing his five string bass and riffing away. Very cool.

The HKPP battles have been fairly rough as of late and then adding the blood pressure issues has really pushed things to the outer limits. Though there's been a ton more pain over the last 10 to 12 weeks, there has also been a definite increase in my songwriting and intensity therein so I guess I'm grateful for both, kind of…
I know that this is an overused phrase, and to be honest, I'm more often annoyed by it than not, but the phrase is “I do not know what the future holds, but I do know Who holds the future.”There was a point yesterday while I was lying on the gurney and staring up at the ceiling, when my perception of life became very simple and uncomplicated. There was a nurse on my right adding a medication into my IV, while my wife was on my left watching the process and holding my hand. Within 15 to 20 seconds of the IV medicine getting into my system, I went into a vicious reaction/hit. I was no longer just laying on the gurney but I was trying my very best to get out of my own skin so that I could escape the spasms and pain. While the nurse was shocked and freaking out at what was happening, CC gently stroked my head and my face, a calming assurance that she was right there with me and that I would be all right, not to worry. I don't know how long the hit lasted. After she got some potassium into me, and I was able to see and speak again, I believe the first words she said to me were “well THAT just kicked your ass!” Yep, it sure did. Even in moments of my own horror, she knows how to make me smile (even if the smile isn't visible). She then told the nurse that that was the last time I will be given that/those meds. Had I been in restraints, I'd have pulled or torn muscles by the lashing my body gave me.

So the bottom line is now that I am back at home and today was a good day of recuperation and I'm looking forward to more of the same through the weekend and getting my strength back.

I doubt that any of you truly know how much your encouragement, prayers and thoughts mean to me and to my family, but all I can do from here at this point in time is tell you “thank you”. Simple but true.

Lastly, I have a bucket of prayer needs/requests for those who want to go there. It’s all good either way.

Peace
w

This is a MUST read...

2011-09-01T15:37:00.001-07:00

Sam's almost there...

2011-05-20T14:03:00.001-07:00

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

The Rain of Rest and War…

2011-02-18T11:25:00.001-08:00

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

2011-02-15T18:45:00.000-08:00

rough tym cant walk. realy weak. prayers.

Tough Update

2011-01-26T11:50:00.001-08:00

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

2011-01-25T17:38:00.001-08:00

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.

2010-12-12T09:19:00.001-08:00

So what's the deal been?

2010-12-11T16:40:00.001-08:00

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

2010-09-28T07:32:00.000-07:00

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 +

2010-09-27T17:45:00.000-07:00

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?

2010-09-06T20:52:00.001-07:00

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.

Today

2010-08-19T01:31:00.000-07:00

I'm so very tired to write very much, but today was a GREAT day that we spent at Marine World/Six Flags. I'll hope to write more tomorrow, but the highlite of today HAD to be taking the chance and riding the Medusa Rollercoaster with Joshua, us sitting in the VERY front seats! No attack followed!!!!

It's the first time that Joshy and I rode an adult-type rollercoaster togther, ever!!!!! Pic to eventually follow.
Thanks PPA for making available some of the tools necessary to have some life OUTSIDE my home!
...Bedtime...zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

bad hit 2nite.

2010-07-26T22:39:00.001-07:00

bad hit 2nite.

What’s It All About?

2010-07-13T01:32:00.001-07:00

Once again I'm way overdue; I believe this is finally now become the rule to the exception.

There has been so much talk over the past several months regarding my consideration and decision to undergo tear duct surgery in my right eye, that I now realize I did not share nearly any of that with my extended family and friends. What follows, will hopefully reflect a coherent reasons and intentions as to why I chose surgery.

Over 15 years ago, it will be 16 years this coming September, I would very occasionally have to contend with what appeared to be a blocked and/or infected right eye tear duct. During the first few years, I would encounter these blockages once a year on average, and though we did not seek medical attention for it most of the , we didn't treat it is logically as we could and after 3 to 5 weeks, the blockage/infection would release and within a few days, my eye would return to normal operation. Over the years, these blockages and infections have happened 2 to 4 times a year in the same eye, and besides the increase in frequency of occurrences, the blockages became more painful, larger and more visible in the corner of my eye.

Here comes the graphic…

This scan shows what the surgery was/for:
The red area in the mid/lower right shows the existing partial blockage.
The yellow coloration shows the bone that was removed.
The green represents the solid plastic tubing that was inserted to create a new pathway for the tears to flow into the nasal cavity. The stitches will be removed in a week and the tubing will be removed in 6 weeks or so.

In what certainly appeared to be an escalation of a problem, the last time that I had to contend with one of these infections, it lasted four or five weeks and concluded with a five day migraine, the likes of which I had never experienced ever before and do not want to experience ever again. It was at this point that we pursued an ophthalmologist and did not settle with the familiar "keep the heating pad on it and massage until painful or it opens". It was during this time in our investigation, but I began to develop the disposition, not unlike that which I have in dealing with dentists... don't like them. This next part is not so nice; for an ophthalmologist or eye surgeon to verify the flow of one's tear duct, said ophthalmologist or eye surgeon must insert a needle into the tear duct opening in the inside corner of your eye and, once said needle is inserted and KEEPING it inserted, they then must change its placement/position and angle of trajectory so that they can use the syringe to force water through the tear duct and verify that it is either open, partially blocked, mostly blocked or completely blocked. This stinking hurts, end of story. The only times that I ever found it mostly bearable was when the ophthalmologist would use numbing eye drops in an effort to numb the tear duct opening. This, unfortunately, was only ever sometimes marginally successful. After a few months of these types of blockage tests, it became clear that the logical next step was to try and fix the problem with surgery. That is what we did last Thursday morning in the main operating room at Morse Ave. Kaiser.

We went into the surgery as prepared as we possibly could have been, but during recovery more lessons were learned, as is the trend when you live with HKPP. The only thing that we did not completely prepare for, was clarifying which narcotics and nausea medicine works best on me... needless to say, what they were prepared with and what I was in need of were entirely different medicines, so when I came out of the general anesthetic, while in the recovery room, I did not transition from one numbing medicine to another; the pain relief simply wore off very quickly and my muscles began to lock up because of the intense pain that was not being managed because the medicines that are standard protocol in their recovery room are medicines that have no physical effect on me. That was a very, very hard few hours with a handful of nurses and technicians who knew zero about my condition and who were stumped as to why my pain was escalating and not decreasing. Ultimately, it would have been in my best interests to have proactively asserted into my chart and paperwork, what quantities of which pain medications work with me and which ones don't. The information is already in the chart, but you have to look for it, and in an ER, an ambulance and/or recovery room, there is very little time spent with the patient one-on-one with their medical chart open right to the page that answers all of those questions.

It is not my fault, but it is something that I could have affected to my benefit had I thought it that much further through.

Ok, it's that time. 1:31 AM and my night meds are just beginning to work, finally.

Peace-

Thursday through Sunday

2010-07-11T17:07:00.001-07:00

Tear duct surgery to create a new tear duct passage for my right eye.

Ixney Unfey.

eye surgery = wow. impressive

2010-07-09T18:47:00.001-07:00

eye surgery = wow. impressive pain

Surgery

2010-07-08T04:27:00.000-07:00

It's 4:24 AM and we are heading in to Kaiser for my tear duct surgery this morning...mild anxiousness but I know Who holds me. Once I am able, I will catch this up in better form.
peace-
w

Friday Down

2010-06-26T00:44:00.001-07:00

It’s been a while, I know. This entry is to log that I took a pretty hard hit this afternoon, even after/as I was taking my Potassium Fizzies.

First thing I noticed was that I was staring at a blank computer screen unable to remember why I began looking at it in the first place. Next, my lips began to go numb and my eyelids no longer were behaving my orders to remain open. I managed tunnel vision to see the counter (I was sitting at the desk in the dining room) and got myself there before my legs went fully out. CC pushed me against the counter in an effort to stabilize me and keep me from falling ( think). She called for Missy to come and help and next thing I knew I was falling into the black chair.

I don’t like the attacks that are accompanied with numbness, especially in my lips; it’s a terrifying feeling of awareness that things are not at all right.

I was down for a number of hours and now can only hobble with the use of 2 canes instead of one.

Prayers for a better tomorrow…

peace-

Dancing with Kaiser

2010-06-18T00:10:00.001-07:00

I replied to a friend just today, regarding my last hospital stay and felt I should include the same in here, so, here you go:

Sorry to not have answered the different requests for more info regarding my last dance with Kaiser Roseville...bleh.

To spare you a Pepto moment (or the necessary gouging of one's mind's eye), suffice it to say that sections of my intestines (entire large intestine particularly) became paralyzed and simply shut down (“went to sleep” according to ER docs) so life got to an unbearable state after about 12 – 15 days and I was taken by ambulance to the ER, released 10 hours later with very little progress and then 48 hours later admitted for 6 days while they medicated me while “we” waited for my system to “wake up”/un-paralyze. 48 hours after being released from my 6 day dance, I was back in the ER due to vicious withdrawals from the med they used to “make the pain bearable” and due to stopping another pain med that I’d been on for nearly 4 years…they SUCK at “dancing”, so to speak.

Hard to believe that THAT IS the abbreviated/edited version…

In fact, the blessing of my stay there was that my brother Kevin Kern came down from Sutter, cleared all his appointment-decks and stayed with me for 24 hrs to make sure I was cared for righteously and had an advocate there during some time where CC and my mom were unavailable or just in need of a break. Make NO mistake; Kevin is a man of his word AND His Word. :o) He’s my bro-

Paralysis can take numerous muscular forms and in this case besides my arms, legs, jaw, neck being hit, the muscles surrounding the intestines also took the hit, only they did not respond to the levels of potassium I took to bring my regular motor skills back around and we had no way to know, initially, that what was going on was HKPP related.

*sigh*

…but hey, I’m writing a little music here and there, as I have the strength and desire to be creative, so life could CERTAINLY be worse.

Swing batter, batter, batter…Swing!

:o)

Jesus Christ Is Lord!

2010-06-06T02:38:00.000-07:00

Regardless of all the crap I know, the pain I feel and the sleep I lose, THIS, I know in more than just in my language;

イエスキリストは主である!
...is Japanese for "Jesus Christ is Lord!"

ישוע המשיח הוא אלוהים!
...is Hebrew for "Jesus Christ is Lord!"

The translations are literally endless, the further you step from your home, for languages and dialects change from corner to corner and country to country, but no matter where you go, Jesus is STILL Lord and MY Saviour!

Lord God, I ask for your blessings on us this day and your forgiveness of our constant and embarrassing failings while we live and breath, even now.

Amen.

2010-06-02T14:47:00.001-07:00

We went back in to the ER this morning due to full body spasms and restlessness; I was unable to sleep last night and tried a variety of locations & position, to no avail.
So, CC took me in and they confirmed her suspicion, that I am experiencing withdrawls from going off of my methadone and from 6 straight days of another narcotic from last week.
We are on our way home now.
I'm exhausted.

Well, I'm on my way

2010-05-31T13:11:00.001-07:00

Well, I'm on my way home; Still no success as to why this is happening, though my hunch is that it is HKPP related.
*sigh*

The fam came 2 visit me-

2010-05-27T18:42:00.001-07:00

Hotel Kaiser...

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2010-05-26T06:06:00.001-07:00

Well, I've been at Kaiser now since Tuesday morning and have begun to get some progress with my system trying to re-set itself in terms of digestion and process. Needless to say, this is not something I'm going to write about in detail, but thr better news is that there IS progress.
Couldn't sleep much last night so I have to be more vigilant in terms of signs of an HKPP hit as a result.
I'm everso gratefull for your prayers and and intercession on my family and my behalf.

There'll be more when I know more-
Peace-

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Currently admitted in Kaiser (after

2010-05-25T21:15:00.001-07:00

Currently admitted in Kaiser (after ER) trying 2 get the muscles around my intestins to work right.
Prayers welcomed.

Back From Hell

2010-05-23T13:40:00.001-07:00

Kind of a dramatic title, but it fits in many ways. Yesterday, Saturday, started out fairly “normal” for me but by 10:30 or 1100 am, I was in severe pain. The pain radiated from my lower intestines and was inconsolable; no matter what I did, I could not make it stop. By noon-ish, CC had called 911 and I was in the ER by 12:30. I stayed in the ER until 8 or 9. I’ll not go into detail (you’re welcome) but the bottom line appears to be that the muscles in and around my lower intestines and colon have become intermittent and thus resulting in excruciating pain. I cannot begin to describe (nor will I) how the day progressed. My body eventually cooperated a little which gave me some relief, but it was brutal. CC stayed with me the entire time and was solely responsible for keeping my HKPP at bay during the whole thing.

…next…?

Stupid Disease!

2010-05-20T23:15:00.001-07:00

*Sent from my email address

Worth The Time…

2010-05-13T13:44:00.001-07:00

I read this from an email today, one that my dad had forwarded to me to read.

It is worth posting in its entirety.

Here is the link… http://www.cnn.com/2003/LAW/01/31/reid.transcript/

…and the article is included below.

<><><><><><><><><><><><><><>

Reid: 'I am at war with your country'

Friday, January 31, 2003 Posted: 11:10 AM EST (1610 GMT)

Richard Reid

Story Tools

Reid sentenced to life in prison

(CNN) – The following is a partial transcript of Thursday's court hearing in which Richard Reid was sentenced to life in prison for his confessed plan to try and blow up a jetliner with explosives he had hidden in his shoes. The exchange is between Reid and Judge William Young.

RICHARD REID: I start by praising Allah because life today is no good. I bear witness to this and he alone is right to be worshiped. And I bear witness that Muhammad Sa'laat Alayhi as-Salaam is his last prophet and messenger who is sent to all of mankind for guidance, with the sound guidance for everyone.

Concerning what the Court said? I admit, I admit my actions and I further, I further state that I done them.

JUDGE WILLIAM YOUNG: I didn't hear the last. I admit my actions and then what did you say?

REID: I further admit my allegiance to Osama bin Laden, to Islam, and to the religion of Allah. With regards to what you said about killing innocent people, I will say one thing. Your government has killed 2 million children in Iraq. If you want to think about something, against 2 million, I don't see no comparison.

Your government has sponsored the rape and torture of Muslims in the prisons of Egypt and Turkey and Syria and Jordan with their money and with their weapons. I don't know, see what I done as being equal to rape and to torture, or to the deaths of the two million children in Iraq.

So, for this reason, I think I ought not apologize for my actions. I am at war with your country. I'm at war with them not for personal reasons but because they have murdered more than, so many children and they have oppressed my religion and they have oppressed people for no reason except that they say we believe in Allah.

This is the only reason that America sponsors Egypt. It's the only reason they sponsor Turkey. It's the only reason they back Israel.

As far as the sentence is concerned, it's in your hand. Only really it is not even in your hand. It's in Allah's hand. I put my trust in Allah totally and I know that he will give victory to his religion. And he will give victory to those who believe and he will destroy those who wish to oppress the people because they believe in Allah.

So you can judge and I leave you to judge. And I don't mind. This is all I have to say. And I bear witness to Muhammad this is Allah's message.

YOUNG: Mr. Richard C. Reid, hearken now to the sentence the Court imposes upon you.

On counts 1, 5 and 6 the Court sentences you to life in prison in the custody of the United States Attorney General. On counts 2, 3, 4 and 7, the Court sentences you to 20 years in prison on each count, the sentence on each count to run consecutive one with the other. That's 80 years.

On Count 8 the Court sentences you to the mandatory 30 years consecutive to the 80 years just imposed. The Court imposes upon you on each of the eight counts a fine of $250,000 for the aggregate fine of $2 million.

The Court accepts the government's recommendation with respect to restitution and orders restitution in the amount of $298.17 to Andre Bousquet and $5,784 to American Airlines.

The Court imposes upon you the $800 special assessment.

The Court imposes upon you five years supervised release simply because the law requires it. But the life sentences are real life sentences so I need not go any further.

This is the sentence that is provided for by our statutes. It is a fair and a just sentence. It is a righteous sentence. Let me explain this to you.

We are not afraid of any of your terrorist co-conspirators, Mr. Reid. We are Americans. We have been through the fire before. There is all too much war talk here. And I say that to everyone with the utmost respect.

Here in this court where we deal with individuals as individuals, and care for individuals as individuals, as human beings we reach out for justice.

You are not an enemy combatant. You are a terrorist. You are not a soldier in any war. You are a terrorist. To give you that reference, to call you a soldier gives you far too much stature. Whether it is the officers of government who do it or your attorney who does it, or that happens to be your view, you are a terrorist.

And we do not negotiate with terrorists. We do not treat with terrorists. We do not sign documents with terrorists.

We hunt them down one by one and bring them to justice.

So war talk is way out of line in this court. You're a big fellow. But you're not that big. You're no warrior. I know warriors. You are a terrorist. A species of criminal guilty of multiple attempted murders.

In a very real sense Trooper Santiago had it right when first you were taken off that plane and into custody and you wondered where the press and where the TV crews were and you said you're no big deal. You're no big deal.

What your counsel, what your able counsel and what the equally able United States attorneys have grappled with, and what I have, as honestly as I know how, tried to grapple with, is why you did something so horrific. What was it that led you here to this courtroom today? I have listened respectfully to what you have to say. And I ask you to search your heart and ask yourself what sort of unfathomable hate led you to do what you are guilty and admit you are guilty of doing.

And I have an answer for you. It may not satisfy you. But as I search this entire record it comes as close to understanding as I know.

It seems to me you hate the one thing that to us is most precious. You hate our freedom. Our individual freedom. Our individual freedom to live as we choose, to come and go as we choose, to believe or not believe as we individually choose.

Here, in this society, the very winds carry freedom. They carry it everywhere from sea to shining sea. It is because we prize individual freedom so much that you are here in this beautiful courtroom. So that everyone can see, truly see that justice is administered fairly, individually, and discretely.

It is for freedom's seek that your lawyers are striving so vigorously on your behalf and have filed appeals, will go on in their, their representation of you before other judges. We care about it. Because we all know that the way we treat you, Mr. Reid, is the measure of our own liberties.

Make no mistake though. It is yet true that we will bear any burden; pay any price, to preserve our freedoms.

Look around this courtroom. Mark it well. The world is not going to long remember what you or I say here. Day after tomorrow it will be forgotten. But this, however, will long endure. Here, in this courtroom, and courtrooms all across America, the American people will gather to see that justice, individual justice, justice, not war, individual justice is in fact being done.

The very President of the United States through his officers will have to come into courtrooms and lay out evidence on which specific matters can be judged, and juries of citizens will gather to sit and judge that evidence democratically, to mold and shape and refine our sense of justice.

See that flag, Mr. Reid? That's the flag of the United States of America. That flag will fly there long after this is all forgotten. That flag still stands for freedom. You know it always will. Custody, Mr. Officer. Stand him down.

fini-

Its after 3am. cant get

2010-05-03T03:17:00.001-07:00

Its after 3am. cant get 2 sleep; legs & hips feeling partially electrically charged and restless.
Grrrrr.
come sleep, come.

Its aftwe cant get 2

2010-05-03T03:13:00.001-07:00

Its aftwe cant get 2 sleep; legs & hips feeling partially electrically charged and restless.
Grrrrrr.

Very nasty and harsh attack

2010-05-01T22:12:00.001-07:00

Very nasty and harsh attack around 12:30. Felt weak before hand. Went down quick; full spasms & cramps. Not walking.
:o(

Hearts Heal in Time…

2010-04-29T23:30:00.001-07:00

I’m still pretty numb to my emotions. Lows are tempting and the highs feel just out of reach. My love for my wife, daughter and son have deepened and my love for our Doby-mix Annie has also taken deeper root.

It’s ok to hurt now.

On to today; PT went good this morning and then following that we went back home and then my dear friend and mentor Art Yeap came by and took me to lunch nearby. CC came and met us at The Habit in Citrus Heights/Fair Oaks for lunch and we were blessed by his heart, spirit and words. Art is a gift to those who know him and I count myself richly blessed.

Following lunch, CC and I headed out to pick up kids from the schools and run them to their homes (2 other families in addition to ours) and it was during the final leg of this run that I began to fade. Couldn’t really move my legs after sitting as long as I had and then down went the eyelids. The hit ended up not a bad one, but my body was exhausted and I think that was a key contributor to the attack.

I was reading an email earlier today and it does a good job of speaking more basically regarding HKPP so I’m going to close out with a quote of part of the email here but not include the name of the writer until I get their permission to include it. Just know that I didn’t write it.

The symptoms of PP are caused by the fluctuation of serum K+ which then affects muscle tone, *but* hypokalemia - in general - affects every neuronal junction in the body, as potassium is one of the two charged cations that "fire up" the electrical grid that our cells operate on.

You might think of this as a dimmable light switch, one of the dial- types, with an infinite number of settings. It will handle a 100 watt bulb, but let's say we only had a 50 watt bulb in the drawer, so we stuck that in the socket.

So, the mark straight up means potassium is at a normal level. When you turn the dial down (dim the lights) you are actually *increasing* the resistance to the flow of electrons in the wire. That's just what happens when K+ ions drop in the blood serum. Cell membranes ALL over the body increase their resistance and become more resistant to stimulation. The muscles get weaker, because the stimulation can't overcome that resistance. In the brain, low K+ causes reduced reaction time, less reaction, a "dimming" of the normal emotional responses.

If you turn the dial UP the light gets brighter because electrons flow more easily, resistance to stimulation is reduced. Just the same in us. Too much K+ in the serum causes the ion gates to become too sensitive to stimulation. They contract too vigorously, or too often, and become weakened. If the dial is turned too high the light bulb pops. In HyperKPP or PMC this is the point where weakness becomes paralysis. The muscle packs up and says, "No more until you get this wiring problem worked out!"

Fluctuations in K+ don't just affect the skeletal muscle, they affect every cell and organ, because we literally run off a power grid created by the movement of sodium and potassium ions in our cells.

And while the PPs are loosely grouped with the neuromuscular disorders, the brain has nothing to do with creating the symptoms.

Peace

End of an Era with Loss in Our Hearts

2010-04-27T06:23:00.001-07:00

Shadow Cat Odum

(September, 1989 ~ April 26, 2010)

Today is Monday, April 26, 2010

Our hearts began to openly break while we stood in the vet’s office and heard the words, that our beloved Shadow cat, whom we’ve had for nearly 21 years, since she was a little grey kitten, has at best a 05% chance of rebounding from a blood clot located at the arterial split for the blood flow to the hind legs and quarters.

She tried to walk but would end up dragging her back-half of her body by pulling herself forward with her front legs.

CC and I had as good a quality time with her as we could have hoped for and that helped…but we knew after talking to our most favorite and trusted vet, Dr. Arbios, that we could no longer save her or protect her from her death. God blessed us even as we shared our breaking hearts with each other and reminded us that she is not dying in great pain or showing signs of sufferings which certainly would be expected when encountering a cat of her age with her known medical issues that we’ve been treating on a daily basis.

Shadow went to sleep in CC’s arms and CC cuddled her until she was fully asleep, then Dr. Arbios came in and carried her to another part of the clinic where she would be given the second shot.

Some of the staff came in and gave us hugs and consoled us before we left with an empty cat carrier.

My emotional fabric has the consistency of a cobweb; many of you know this already.

Your prayers and thoughts are not unlike life-changing food for the starving, that strengthens them, nourishes them and brings them a lift in their spirit. We have been weakened and our hearts have been broken.

peace.

Thursday Night…

2010-04-22T23:04:00.001-07:00

I have a closed/blocked right tear duct and have been referred to a Surgery clinic to resolve the issue. The biggest issue at the moment is a migraine since Saturday. The two pain shot injections (After Hours Clinic on Sunday and ER on Monday ) were very helpful, but they didn’t break the cycle.

We saw an Ophthalmologist on Tuesday who tried a few times to irrigate the tear duct, but the efforts were unsuccessful and were pretty stressful for me. I’m doing better at home; sleeping alright, but once I get up and as the day progresses, the migraine increases. Doing computer work (yeah, like posting a blog…), watching TV, reading, light, sound and movement all tend to escalate it. The antibiotics for the eye should resolve some of that pain and hopefully the migraine will end soon.

Earlier today, I felt a burning sensation at the opening of the tear duct and noticed some an off-yellow substance at the opening and after cleaning that away, the “bump” blockage felt much smaller. It’s not gone, but it is certainly better.

Thank you so very much for your prayers.

The goal now is to vanquish the migraine, and if possible, figure out what exactly caused it.

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

And now…

some pics of Joshua’s 5th grade float:

View Full Album

Flickr Tags: HKPP,Hypokalemic Periodic paralysis,muscle spasms,myclonic jerks,MDA,PPA.org,potassium,sodium,saline,Hyperaldosteronism,muscle pain,K-Lite,Effer-K,K+

LiveJournal Tags: HKPP,Hypokalemic Periodic paralysis,muscle spasms,myclonic jerks,MDA,PPA.org,potassium,sodium,saline,Hyperaldosteronism,muscle pain,K-Lite,Effer-K,K+

BuzzNet Tags: HKPP,Hypokalemic Periodic paralysis,muscle spasms,myclonic jerks,MDA,PPA.org,potassium,sodium,saline,Hyperaldosteronism,muscle pain,K-Lite,Effer-K,K+

Just finished at doc appt.

2010-04-22T10:35:00.001-07:00

Just finished at doc appt. Migraign walking all over me. picking up meds to break it.

Update

2010-04-21T10:29:00.001-07:00

I saw the eye doc yesterday and he tried to flush the tear duct but the blockage/infection is not moving, so we are now headed towards surgery to remove the blockage. I now know what migraines feel like and that sucks big time. Reading, watching tv, light and loud sounds all make this whole thing worse.

Prayers are coveted and welcomed big-time.

I’m sorry I haven’t been in contact with anyone; I’m not much for legit conversation at this point, right now. Please forgive my silence.

Hopefully this will get better asap.

Currently fighting migrains brought on

2010-04-20T21:27:00.001-07:00

Currently fighting migrains brought on by a trarduct infection. Staying down.

Still down today with an

2010-04-20T12:12:00.001-07:00

Still down today with an eye/tearduct infection. Having to read and write using my left eye. This sucks.

Late Night Question and Prayer Request

2010-04-18T00:58:00.001-07:00

So, here’s a question I just had to have answered before I can finally go to sleep…

“When do you use i.e., and when do you use e.g., and what do they mean?

Answer: (from About.com at http://ancienthistory.about.com/od/abbreviations/f/ievseg.htm)

The Latin abbreviations "i.e." and "e.g." come up very frequently in writing and would probably come up more often if people were more sure of when it is right to use "i.e." and when "e.g." is required.

Ø i.e.

"I.e." stands simply for "that is," which written out fully in Latin is 'id est'.

"I.e." is used in place of "in other words," or "it/that is."

It specifies or makes more clear.

Ø e.g.

"E.g." means "for example" and comes from the Latin expression exempli gratia, "for the sake of an example," with the noun exemplum in the genitive (possessive case) to go with gratia in the ablative (prepositional case).

"E.g." is used in expressions similar to "including," when you are not intending to list everything that is being discussed.

Okay, on to reality.

Every year or so, I manage to acquire a tearduct infection in my right eye and guess what’s kicking my butt without a rest…?This one hurts SO much more than any of the other ones and is affecting more than just the tearduct opening itself; we’re talking vision is getting impaired in my right eye, the tissue all around my eye, eye brow and skin on my forehead is painful to the touch. I ended up in an attack tonight because of the pain and muscle locks that were happening due to the pain. If ever I wondered if the enemy attacks us when we are down and while we are beginning or in process of God’s work, start the presses and send this to print because it’s a fact.

Speaking of attacks and thus battles, this battle is done with me for tonight. Body’s hurting too much to continue to sit and try and type using one uninfected but slightly blurry eye.

I’m praying for His miracle to remove this infection, in the name of Jesus.

I covet your prayers-

peace

Issues and Victories

2010-04-15T15:31:00.001-07:00

As the title suggests, recent memory is a collage of both issues and victories. For now, the issues are more visible because they interrupt my enjoyment of even the little things. Currently, I’m at my desk typing these thoughts and becoming distracted by leg and thigh pain that have been very present all day. I took a hit while at PT this morning and had to be helped out and into the car thanks to an attack while on the PT table. Since then, I can only walk with the use of 2 canes or the walker, so I’m choosing the 2 canes for now, though they make my arms fatigue faster.

Last night, while at Joshua’s Open House at school, I took another hit but CC got me to the car before it locked on to me and took me down. I remember saying to CC that I feel like a prisoner. That’s how I feel today, too. It makes me SO angry and there is nothing I can do to prevent it, in totality. I can watch my diet, body temp, glucose levels and on and on, but I can do nothing to prevent these hits from happening.

So frustrating.

…More later-

After Easter 2010

2010-04-08T18:34:00.001-07:00

Well, it's been quite a while since I've posted once again and there's much that's gone on over the past 3 to 4 months that could use some explaining, however, the majority of all of that does not belong on here because it involves other people. So, suffice it to say that Easter has come and gone and the Odum family in Orangevale is returning to some semblance of normal following a week long spring break for both kids.

Okay, new rant, yet brief: is there any logic, WHAT SO EVER, to youths and young adult males still wearing their pants at or below their butt line, so that when they walk one hand must always be holding onto their pants so that they don't fall completely off?? I truly, truly, truly did not get it! All right, I'll do my best to stop there and try and let it go for the day. GAHHH!!!!!!

I was noting today, while looking around on YouTube.com that there are hardly any elaborative or definitive videos of people suffering from HKPP attacks. I found only one and it appears to be far more of a joke with the attacks seeming like some kind of punch line, rather than it being a beneficial video to somebody wondering if they are contending with neuromuscular attacks such as HKPP. Actually when I watched the video, I ended up more frustrated by what I saw them I did encouraged that there were was a video on YouTube entitled HKPP or Periodic Paralysis. So, what this brings me to, is feeling strongly that I should be videotaping my attacks as often as we are able to catch them on video, but not attacks where I'm not moving because that shows nothing to the viewer, in my opinion. What I'm finally at the point of wanting people to see, and recognize is that this disease manifests itself in a variety of different physical ways and unfortunately for me, but possibly fortunately for those who would view any of the videos, I suffer from a variety of attack manifestations, most of which are very apparent to the eye and I think would be helpful to have on tape. Some of the videos that I had seen on YouTube shows a person simply not moving for 30 or so seconds, and for me, that shows me only that a person can stay still for that amount of time rather than describing what's going on to the person in the video, so that's kind of where my head is right now. We have a Sony digital camcorder that we do all of our video recording on, but I am no longer able to locate the software install disk which will allow my computer to recognize the camera, so if anyone reading this has some constructive suggestions as to how I can remedy that problem without having to spend the money on buying another software package from Sony, please, please share it with me.

Now, as far as attacks go over the past 3 to 4 months, they have been nearly daily; ranging from full body “rag doll” paralysis to localized appendage paralysis, full body muscle spasms in a cyclical manner to full body “lockup” paralysis. Only in the past of weeks have I felt that I'm gaining ground back again, with much of that, in part, due to Mark McCoy and his Physical Therapy Clinic. The last attack was two days ago, Tuesday, shortly after helping CC cut off one of the branches on one of our backyard trees. I didn't feel it was very much effort at all, but CC told me later that she could see in my eyes and in my posture, that the attack was imminent. Very shortly after cutting the branch, I went back inside and sat down in my black chair and within a matter of minutes, I was down for the next four hours; unable to get up, speak and move.

I think it's also worth sharing that on Easter Sunday, I ended up having two attacks, hours apart from each other, but that following each of these attacks, my body rebounded in a matter of minutes after I was able to drink two or three doses of potassium each time. It will never get old to me and it will never be unimportant, to share that the biggest difference, in terms of having a better quality of life, was when we attended the 2009 Periodic Paralysis Conference in Orlando, Florida and we learned that the method of potassium treatment that we had been using since my diagnosis, was at best 7% to 10% effective in raising my potassium levels every time. We had no idea that the method of combining Apple juice with 25 mEq of liquid potassium was counter-effective, but it made all kinds of sense once it was explained to us and we were then able to understand why it would take me so very long to recover from my attacks. I'm not sure how many people read this or how many people remember how long my attacks were back in 2006 and 2007, but I would have attacks that would leave me bedridden for sometimes weeks at a time and I had to have home healthcare come to our house 2 to 3 times a week to run my labs and determine whether or not I needed to be admitted to the hospital to jumpstart the recovery. All of that has changed. All of it. At the conference, we were given the opportunity to try another form of potassium during one of my attacks, and the speed at which I recovered was astounding. If there is anyone out there who is battling a similar or same battle to mine, and your primary method of addressing your low potassium is with liquid potassium, then I would greatly encourage you to ask your doctor if you could try the Effer-K 25 mEq effervescent tablets. The reality that my attacks sometimes last hours is still a welcomed change to what, in my past, have been days, not hours. I think that there is another critical factor in terms of my faster recovery rate, and that is the weekly muscle stretching and massage attention that comes from my attending physical therapy twice a week. It's not a matter of only muscle stretching and weight conditioning nor is it only massage in the muscles but it is the combination that is helping to mitigate the muscle damage that I experience from each and every hit. That's something that a lot of people don't talk about when they get into discussions of HKPP as well as other forms of periodic paralysis, and that is that the muscles that are being affected by the leakage in the Channelopathy at the cellular level, are being permanently damaged with each attack, so, the better condition the muscle can be in prior to the attack, the less the damage and, to an extent, the quicker the recovery.

Well, it would appear that I have more on my mind than I thought... I hope all this make sense, but if it doesn't, that's okay.

Today has been a very, very full day and I am wiped out tired, so I'm going to post this and go and lay down for the remainder of the day/evening. As always, your prayers are coveted and your encouraging thoughts are warmly received.

Peace.

Photo test post to keep…

2010-03-29T00:15:00.001-07:00

View Full Album

Title to be determined later

2010-03-28T01:51:00.001-07:00

Once again, I find myself wanting to post long after I should be asleep.

I know that I have been conspicuously absent from communications over the last several days if not several weeks and I'm sorry about that. In terms of what this blog was originally created for, it was/is to record my blessings and my trials, while living with this infuriating disease.

This past Thursday night, while with CC and the kids at Missy's karate class, an attack started in very quickly and we had to to leave the dojo while I felt I could still walk; very awkward and embarrassing. I'm not certain of how long the attack actually lasted, but I believe it lasted for almost an hour, where normally my attacks (now) usually last a few minutes, and then the recovery can take hours or days.

CC and Missy managed to literally carry me into the house because I was unable to even assist in balance or motion. They also got me up stairs and into bed in the same manner. I woke up in the darkness of the morning, aware that I couldn't move my hips, legs or feet. CC got up and got me some more potassium and then I fell back to sleep in the same state. The next morning, I was barely able to get from the bedroom to the bathroom and back without being carried and I did not make it downstairs at any point on Friday. At one point, while I was checking e-mail on my computer up stairs, another attack happened, with it being my abdomen, chest and leg muscles paying the price this time; back to the bed I went and back on oxygen. When I get the attacks where I can't breathe very well, even though those attacks are not uncommon, those scare me the most, which is what the attack was in my office.

Yesterday, Saturday, I spent the morning in bed and then, with the use of two canes, was able to get downstairs and sit outside in my motorized chair while CC and Josh worked on the front yard. At least I got to be in the Sun for a small block of time, but the hip, leg and foot pain prevented me from doing much of any walking. In the afternoon, just after eating my lunch while watching TV with the kids in the living room, I paralyzed again. A bigger difference with this attack was that my eyes were able to be open and controllable, for the most part, but I still wasn't able to speak.

It has been a really rough few days and I know that each of us here would covet any prayers that you would be able to offer on our behalf. In particular, I really want our family to be able to go to church tomorrow morning and I don't want this disease to prevent that from happening.

I always say that I will get more written and then I don't, but please know that it is something I want to do.

Praying for peace and restoration and protection --

w

LiveJournal Tags: Hypo,kypo,hyper,Hypokalemic,Hyperkalemic,periodic paralysis,Hypokalemic periodic paralysis,hyperkalemic periodic paralysis,sore muscles,muscle pain,myotonia,myclonic jerks,paralysis,spasms,rare,Mayo pain clinic,profuse sweating,unable to walk,motorized wheelchair,treatment,neuromuscular disease,potassium,saline,insulin

Regina and Joe getting married!!

2010-03-13T15:24:00.001-08:00

Regina getting married-

We have an opportunity...

2010-03-09T19:26:00.000-08:00

Greetings all-

This is a quick post to ask those reading this to follow the link provided and cast a vote for "Rare Diseases". There are currently 3 days left to account for any votes, so whatever can be done in this period of time will prove differential. I read today that "Rare Diseases" is currently in sixth place on the list, and if it moves down the list, then financial resources may not be made available for future research and studies.
If you've ever wondered how you might be able to positively impact my life, even though we may not be near each other, I think this is one way that could be very helpful.
There are currently 2,732 votes.

The site asks for your name and an email address and to create a password; that's it. They will email you a confirmation link and register your vote.

Again, the link is:

http://www.change.org/ideas/view/25_million_it_is_time_to_care_about_rare_disease

Thanks for considering it-
peace-
w

The Latest on Wednesday, January 27th…

2010-01-27T13:29:00.001-08:00

I wanted to get written down, in some location, how the past number of days have been, physically speaking. Currently, my left hand is contending with small but consistent muscle spasms that make typing and focusing a bit more of a challenge; I'm using the Dragon software to speak/type. Sunday afternoon
The past several days have incorporated attacks, but not necessarily each day. Of more consequence, was the attack that hit Sunday afternoon and then the following two mornings. Sunday's attack was triggered by my helping out with the media team at our church on Sunday morning and likely the energy and effort that was involved in the rehearsal the night before that I attended as well. In fact, it's not correct to state that my volunteering and helping in worship triggered the attack, it is better to say that the attack is a result of the energy and stress that were involved over a period of hours Sunday morning, but all that having been said, I count myself as blessed to have been invited to out and to have had the energy and stamina to be able to sit in a media tech booth again after four years of an activity. It was exciting to do but it came with a price, and that's okay. I would rather have done something and pay the price then to have done nothing and waited out to see if that too might have a price tag....

I was aware when we were leaving the parking lot at church on Sunday, that I was going to be in for a ride. Missy helped me walk inside from the Van into the house where I ended up being down for the next several hours. I woke up in time to eat something for dinner getting upstairs to bed and then off to sleep. When I woke up Monday morning, my right arm, shoulder and hand were paralyzed; I couldn't move them in any manner though I could feel them. That was the first time in a very long time where I was reminded what it feels like to feel helpless. CC stayed home with me and took care of me and by late afternoon we were able to get me up and walking though I still could not use my right arm for much of anything. That night I went to bed in hopes that things would be far better the following day, but when I woke up Tuesday morning, my right arm was three quarters paralyzed, but at least it was not completely useless. I was able to get out of bed and keep myself mobile. My cousin came over and picked me up and took me to my physical therapy appointment with Mark and, though getting into a facedown lying position on the table is very difficult to do without the use of one of your hands/arms, I accomplished that and the appointment went fine without triggering any issues. As a matter of fact, Mark was able to massage and stretch my right arm and shoulder, which I thought was going to be probably impossible. If I understood correctly, the issue comes in mind trying to control the muscles and make them do what I want them to do; Mark was able to move my arm around and stretch it and massage it because I did not try to control it but just let him move it around. When I tried to move the arm it was a whole different deal. What's the end result? I left the appointment without having another attack triggered and without my right arm becoming more sore than it was when I went in. I did end up being down for the better part of the rest of the day and using pain meds to manage what were becoming more sore muscles than previously anticipated; I hate losing out on my days and evenings but I also know sometimes that's just how it has to be because I'm not a lot of fun to be around when my pain level is up anyway. Kind of lose -- lose scenario.

I've also noticed that I've been very, very tired the last five or seven days which I think is because of not sleeping so well. Here's to hoping in returning to a normal and productive sleep pattern.

Time to close out now and take a nap for a little bit; I've been invited to take part in a PPA conference call this afternoon, so I need my wits about me for that time.

Until later, peace.

What is a Sigalert?

2010-01-22T12:41:00.001-08:00

Here’s a random entry…

I’m sharing the following from the CHP website http://cad.chp.ca.gov where they explain in detail just what, exactly, a Sigalert it and what it stands for. I came across it this morning while check traffic for my buddy who is travelling from San Jose to Lincoln, CA. I remember not knowing how to define what a Sigalert was/is, so when I saw this, I figured to share it here. Also, before you travel via freeway in CA, you can check the above CHP site for traffic and you can also check Sigalert.com http://www.sigalert.com and choose your travel location and see if there are any reported incidents or slow-downs in your path.

Anyway, here you go, straight from the C.H.P.:

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Sigalert - a warning broadcast by radio stations telling of unusual or hazardous traffic conditions.

What's so unusual about that? All radio stations broadcast those kind of messages. But, a Sigalert is unique to Southern California. Here is the explanation by Todd S. Purdum of the New York Times, in May, 1997.

Each weekday morning in the City of Angels (Los Angeles, CA) the rat-atat-tat of traffic reports crackles over car radios every six minutes, a jumble of jackknifed big rigs, three-car pileups, and stop-and-go rubberneckers in the realm where the automobile is king.

Then, when you least expect and can least afford it, you hear the S-word: "A Sigalert on the eastbound Santa Monica Freeway has traffic backed up from Fairfax." "A Sigalert on the San Diego Freeway just south of the airport." "A Sigalert on the Pacific Coast Highway."

A Sig-a-what?

Every Southern California driver knows what it portends.

"You're about to be delayed," says Layna Browdy, corporate communications manager for the Automobile Club of Southern California, who hears plenty of Sigalert's in her 100-mile daily round trip between her home in Irvine and downtown.

The term is such a universal touchstone that when the Pacific Park amusement arcade opened on the spruced up Santa Monica Pier, it christened its blue-and-yellow bumper car ride the Sigalert.

But what does it mean?

"I always thought it meant signal alert," actor and director Rob Reiner confessed before allowing that he knew the truth that most Angelenos don't. That the Sigalert was the brainchild of a broadcast pioneer named Loyd C. Sigmon. [At the time this article was written Mr. Sigmon was alive and well and driving a cream-colored Lincoln Continental with a hands-free cellular telephone and a vanity license plate that proclaim, "SIGALRT."]

"It catches your attention," the dapper Sigmon explained in an interview. "It's just a little different."

In fact, the Sigalert, like so many things in Southern California, began as a bid for attention in 1955, when Sigmon was partners with singing cowboy Gene Autry in Golden West Broadcasting. Golden West was the parent of radio station KMPC [and KTLA-TV] "and looking for ways to get more listeners" in the face of growing competition from other radio stations and television.

The Cold War was on, the Eisenhower administration was building the interstate highway system, and what better way to grab a listener's ear than with instantaneous notification of public disasters, emergencies, and delays?

The Los Angeles Police Department said it could not be bothered to call every radio station. But Sigmon had a solution.

As an overseer of radio communications for the European Theater (in World War II), "Sig" Sigmon had spent hours searching Nazi transmissions.

He proposed that stations install receivers that would be activated by a signal from police headquarters and then record the officer's bulletin for immediate broadcast. The department's chief, William H. Parker, slightly skeptical, said, "We're going to name this damn thing Sigalert."

On Labor Day weekend in 1955, the first bulletin went out, Sigmon recalled.

Since then, the original shortwave system has been supplanted by computer links, and the California Highway Patrol has taken over its administration. But the basic idea is the same.

The official Highway Patrol definition of a Sigalert is any unplanned event that causes the closing of one lane of traffic for 30 minutes or more, as opposed to a planned event like road construction, which is planned separately.

But the term has passed into far wider use, and it appears in the New Shorter Oxford English Dictionary. In the past couple of years alone, a check of local newspapers shows an FBI agent warned that a raid on medical and legal clinics should serve as "an official Sigalert to those involved in insurance fraud," and a sportswriter described a sneeze-prone golfer as having "Sigalert sinuses."

"When I was doing traffic I got more questions about, 'What the hell is a Sigalert?' than anything else," said Bill Keene, who pioneered radio traffic reporting and retired in 1993, after 37 years on the air and who is credited by Sigmon with helping popularize the term. "But nobody knew just where it came from. It got really big in the mid-70's."

Peace-

Day 5…

2010-01-13T20:23:00.001-08:00

…Well, I’m going on, or I should write that I’m ON, the 5th straight day containing hits of one form or another. Though I have not gone down today, per se, the after-effects of the previous few day’s hits have wracked my body and now it’s mostly a pain game…if you call it a game.

Being in pain brings its own stress which, of course, is in its own right, a trigger for attacks; viscous circle, anyone? *sigh*

Maybe tomorrow will be better…I just have to wait and see, but until then, I covet your prayers for rapid healing and restoration of angry muscles cells.

All my love and the love of my family to everyone back on the East Coast who are mourning and celebrating the life of my dad’s sister, Aunt Helen; I wish that we could be with you all. We love you.

That’s it for now. Sorry that this one’s not so up-lifting. Better days ahead-

The New Year…

2010-01-07T23:20:00.001-08:00

Well, we are into the New Year now by 7 days and I’m starting out the year behind (already) in my blogging, but hopefully I will maintain a reasonable pace in my writing so that I can keep this more regularly updated.

It’s 10:40 now and I want to get to bed sooner than later, so this will likely not be very long or very in depth and might be off a little regarding what happened what day…

Christmas Eve: Christmas eve was very low-key due to a few of us feeling poorly and just needing to be low profile, but we were, all 4 of us, altogether and truly enjoyed our time together watching Christmas movies all day and cuddling with each other. It was a very intimate family time and most memorable for me in a good way.

Christmas day: Missy woke us up a little after 8 AM and began the day with notable excitement. Both kids truly reflected the wonderful, hopeful child and spirit within themselves and CC and I really enjoyed watching them open their presents. Much later in the day, my aunt and uncle and my 2 cousins (their 2 boys/men) came over and celebrated Christmas with us as well, which was a real treat for all of us. They have HUGELY impacted our lives over the past 7 years in incredible ways; sharing their love, their time, their energy and their tireless support in spirit. I solidly believe that God had them in mind when He called us to Fair Oaks Presbyterian and its community. I could easily go on, but it’s getting later, so…*sigh*…this was either on the 25th or 26th…

Also on Christmas day, I had to deal with an attack, but thanks to the Effer-K (the effervescent potassium medication), the attack was shorter in duration, thus minimizing the resulting muscle damage and trauma. This is a good thing.

We spent the following week at our house, enjoying the Christmas time and then we went to the Bay Area for a packed 4 day visit with my parents and sister’s family. We were able to see some additional family folks, but were not able to see many of our friends, as we had hoped we would, and that bummed me out. We had another Christmas “morning” type of present celebration on New Year’s day, once all three families got into one place at one time and that was a wonderful time together. Unfortunately, also during our time there, I had an attack on New Years Eve and 2 attacks on New Years day…and that sucked. Yes, the meds did their thing, but those attacks were more painful and lasted longer than I would hope they would have, and they impacted everyone at the family gathering, which was all the more frustrating. We made it home early Sunday afternoon and got a good head start on the coming school and work week.

School and life patterns are back into swing and coming up to speed accordingly, and though I’m not attack-free, I am *feeling* much better than I did over the past 3+ years and subsequently, I am more confident and creative and happier; I’m coping better.

Lastly, we took some family pictures a few weeks back and they came out pretty dang cool. I’ll see if I can include the .pdf I sent out and a pic of the 4 of us, plus Annie…

peace all-

...and the link to the PDF is here!

Merry Christmas!

2009-12-30T09:38:00.000-08:00

Merry Christmas and the Happiest of New Years!!!!

2009-12-07T21:37:00.001-08:00

Well, It’s Been a While…

2009-12-05T22:47:00.001-08:00

Well, it's been quite a long time since I have posted anything written to the blog and I'm sorry that it has taken so much time for me to get my thoughts together to post again. Some incredible things have taken place since we returned from Orlando this past October, and in addition to those incredible things, I was challenged to seek out my motives for writing all that I have, into the blog. The challenge to do so was from one of the purest hearts and someone whom I respect deeply, so I know the intent was not to cause me any discouragement whatsoever, but to learn that much more about myself. Since this disease kicked into gear in 2006, I lost a lot of what I perceived to be my physical identity;

I lost my job
I lost my career
we lost our home
I lost my drivers license
I lost my truck
I lost my independance, to a significant extent.

…and without my license and my truck, I quickly lost touch with the majority of my friends. By no means do I think that any of my friends did not, or do not want to see me anymore, but the convenience of being able to step into my truck and drive to see someone was removed and with it a major motivating factor from the bulk of my relationships. Under the circumstances, it truly is nobody's fault; no one gave me the disease and no one made me get sick. Pretty much all of my friends either have jobs, families, school or all three and I know that it is very difficult to break routines just to go catch up with somebody, regardless of who they are. There's only one reason that I am sharing all of this with you, and that is because I realized that I've been using the blog as that friend, that embodiment of all of those different friendships combined into a computer generated pen pal of sorts. I don't think that that is bad, in another itself, as a matter of fact, I think that it has been very helpful to me with great regularity. The problem is, well... that I am feeling tremendously better and I don't want to be talking just to a computer screen, I would like to be talking to actual people, in person. We all have those close friends that we feel that we can share our hearts, our minds and our souls with, and that's a very good thing because you know who you're talking to, that you're able to verify that what they're hearing is in fact what you are saying, and more importantly what you're trying to communicate. When I share here on the blog, I don't know who reads what, and as such, I have to remain guarded and constantly edit every word and punctuation point before I hit the publish button. So, there you go. That's pretty much it, in its most brief form. I still haven't figured out how to move forward with the blog in a way that will satisfy me, but I do know that I want to use the blog in a better that will keep my family and friends up to date on what's going on with me, at least all the things that are appropriate for me to share.

Now, as I mentioned above, I am feeling tremendously better since returning from Orlando, I would even go as far as saying that the trip to the Periodic Paralysis Organization’s Conference in Orlando this last October, was life-changing for me and for my family. Before going to Orlando, I would have attacks every day or I would have one very large attack that would last a matter of one to two weeks, with several smaller crashes within those 7 to 14 days and it would typically take me hours to recover from the attack or the crash, to the point that I could communicate effectively. While at the conference, I went into an attack (no surprise) and one of my pen pals from the HK PP listserv, who I had only known in person for a matter of hours, came out to see if she could help CC in caring for me and helping me recover. When she saw that I was taking liquid potassium combined with Apple juice, she explained to us that the Apple juice would actually become a vehicle for the potassium to not be absorbed, but instead, just be flushed out of my system like any other liquid. Her explanation opened our eyes to understanding why it would take me so very long to come around after an attack; because the potassium was being prevented from absorbing due to the juice. CC told me that she left to get her purse and when she came back, she brought with her a different type of potassium, known as a “fizzy”by those who use it. This type of potassium is effervescent it is very quickly absorbed into the system. I actually came around within minutes! CC called our Dr. back in California, that afternoon, and asked for a prescription change from the liquid potassium to the fizzy tablets, and my life has not been the same since, praise God! There were other very significant experiences and understandings from our trip but I don't think any of them were as significant as the change in potassium delivery. God has not removed the disease from my body, but he has blessed me with friends and family who continually fight alongside me for a much better quality of life. How could anyone not see me as extremely blessed? I know I am not alone, I have a better handle on fighting the disease, I have more energy and I feel like I am living life now, more than I have in the last three years. God is good.

Before I close out, I would like to also share one more thing, and that is that I am now doing a one hour show on media technologies in the church, on an intranet Christian radio station on the Creator Leadership Network click here. My official Showtime is on Mondays at 4 PM. Unofficially, the show will run at various times during the week until those other times get filled by other hosts. Theoretically, the show is currently running at:

Mon-Sun at 4am and 4pm

Tuesday and Saturday @ 8pm,

Wednesday and Sunday @8am,

The last show that I recorded will be the first of a three-part series, which I think will probably begin running one week from this Monday, December 14... but don't quote me on that. It's entitled “Communication, Integration and Preferences”. The first hour’s talk will cover 2 different relevant topics that generally face the sound-tech team members, as well as, Worship Leaders and Ministers of Music, and they are:

“Church in a box?” and “How to communicate with your tech during a service”

The following two shows in the series will address “Integrating Sound Reinforcement with Organs and keyboards”, a response to an Email Regarding “Mic Preferences and Placements”, and also “Monitor Mix Issues”.

If you click on the Reverence Channel link, it will open up a small window with a media player in it. If you click on programs, you'll be able to see all of the different folks who are on the station as well (Vern Sanders, Doug Lawrence, Steve Amerson and Mark Lawson, to name a few). For the first time in years, I'm truly excited to be given the opportunity to serve in a manner that allows me to share my heart and my experiences in a new way. This was, and would have continued to be, totally impossible prior to our trip to Orlando and it should be duly noted that the offer did not come through until after some of my strength and confidence had returned, once we had returned from Orlando. I don't believe in coincidences but I do believe in Him and His timing, period.

If you wish to, check out the site and check out the show and then shoot me an e-mail sharing your thoughts with me, your constructive criticisms and any ideas you may have on how I can make the show grow. And no longer believe that it matters whether or not the door is closed in front of me or not; God's key opens every single door. I really hope that I will hear from some of you regarding this new adventure and I'm also hoping that you will understand my silence for the last month and a half and will accept my apologies for it.

<http://www.creatorleadershipnetwork.com/>

<http://nexmix.serveftp.org/createrev/player.html?noresize=y

My love to you and your families-

My birthday dinner...

2009-11-27T18:41:00.001-08:00

Lobster, Filet Mignon and King Crab Legs...

2009-11-27T17:10:00.001-08:00

Hail video...

2009-11-27T16:59:00.001-08:00

Hail 2

2009-11-27T16:56:00.001-08:00

Hail 1

2009-11-27T16:53:00.001-08:00

It hailed like crazy just a little while ago..

It’s Sunday, October 18, 2009 and...(pt. 1)

2009-10-19T22:49:00.001-07:00

The Author's Head's up: “This’ll be a long one…Visine anyone?” :-)

So the big question for me now is, where do I begin? I want to first share that there is no definitive reason for my “radio silence“, but there have been a variety of factors that have played a part in it. Most of those factors have to deal with my strength and Constitution, as well as, not being at the computer at the right time when I feel strongest and most willing to converse. Of course, had I brought my mini-handheld voice recorder, then I would've been just fine because I could have shared all of my thoughts straight on the tape and then simply played the tape back with the computer cable plugged into the headphone-out and, voilà; the majority of my words would have appeared scrolling across the page. Twas not to be though, so I shall continue... sigh.

(Just as a side note, in case you find any spaellingg airrors or you find a word that doesn't make cents with the sentence, sound out the word and you'll probably get the idea of what I had wanted computer to write instead of what it wrote) ha.

Before getting into the particulars on specifics of our trip to Orlando, I want to share that both CC and I agree that the conference, beyond a shadow of a doubt, facilitated in changing our lives. Not just from having an opportunity to speak to and hear from the doctors who are specifically and actually focusing on the different types of periodic paralysis, but more importantly the relationships that became cemented upon meeting other members of the periodic paralysis list and hearing their advice and their suggestions and their encouragements and feeling their support of us; of me specifically as well as CC specifically and the kids and us as a family. If I look beyond this, I concede that the impact was huge on both of my parents who traveled to Florida with us and attended the conference as well, and my aunt Judy Clark who traveled with us to and from and was a supportive trooper from beginning to end; she also attended every day of the conference, and I believe every session within. An avid priceless blessing to the trip was that my cousin Montaigne and her husband joined us at the hotel for the conference and we had the opportunity(and took it!) to spend nearly every day catching up enjoying one another's company. It had only been a couple years since we had seen Monteeen and David when they came out with their son Jacob, San Francisco and then Old Town Sacramento. We had a wonderful visit with them then, but it was all too brief and we hardly really had time to sit down and talk leisurely, so when Monteen shared that she and David wanted to join us at the hotel for the conference, we were thrilled! Then, to add blessing on top of blessing, my cousin Val and her husband Ron and their nine children came to the hotel and sat with us down by the pool for an hour or so, on one of the days, and then we were all able to go out to dinner together. They also met us at the beach on Wednesday late afternoon and we all had a blast together; each of the kids that were able to come with her (5 of them) played with Missy and Josh in the surf and even showed both Missy and Josh how to boogie board, East Coast style! :-)

Without question, my children have new friends for life that happened to be their cousins, third cousin to be precise, I think... anyway both kids were just thrilled to have met their cousins and met the family that was available to see us and even felt very good about the conference and what they learned as well, though I expect if you were to ask them what their most favorite part of the trip was they will probably tell you being able to hang out at the giant pool and lay in the sun. It was excellent.

Okay, now to share some more of the specifics of the trip, and I guess the best place to begin is last Thursday morning and go from there...
Thursday morning began at 3 AM; after getting about two hours of sleep, CC and I got up and began the quick load and pack into the Van, including children, so that we could head out for the airport by 4:00 AM. Though we left at 4:15 AM, we made it to the airport in reasonable time and managed our way through United's baggage check (each piece of checked baggage was a separate cost…thanks SO much United) and then through security and then on to the plane. I drove my chair right up to the gate and we waited for the pre-boarding to begin and then I rode my chair all the way down to the plane entrance, where I got up from there and made my way into the plane via cane and a stable arm and found our seats.

So we chose to do brief layovers both going to Florida and returning from Florida. Our layover on the way to Florida was in Los Angeles, and then on our return flight from Florida, we changed planes in Denver before continuing on to Sacramento. Now as far as the flights go, we paid for and expected what United calls Economy Plus which I don't think is very much more than getting an additional 5 inches of theoretical legroom. Being that you have to stow your carry-on baggage above you and below in front of you, if you, like we did, have two pieces of carry-on each, then one goes up in the luggage space above the seats and the other goes down below the seat in front of you, rather effectively taking up the approximate five extra inches of legroom and returning you to what is essentially glorified “cattle class”. Our flights to Florida were reasonably uneventful and not very noteworthy, with the exception that we learned that flying United's Economy Plus felt exactly the same as flying United's Economy or “cattle class”. So the first observer would look at this and say “…well then you should have checked your other baggage and only had one carry on to take with you…” which would've been just fine with us had United not be charging for each single bag you check and there were no options for us to minimize what we needed to take. Specifically in my case, I was bringing my laptop, which is unquestionably a carry-on, and I was also bringing in oxygen concentrator which is literally about the size of a car battery, only it comes in a blue canvas case attached to a mini, unit designed collapsible hand truck. Add to that my green bag which carries my medicines and my identification as well as our backpack that contained food, medicines and books etc., and you can see our situation; each of the kids, as well as Aunt Judy, all had carry-ons they each had to manage. Easy solution? Stop freakin’ charging people extra to check their luggage, United!!!

Okay, moving on...
so I don't really remember much of the details regarding our flights out of California because I had taken medicine to help me rest and hopefully avoid any hits/attacks while in transport. Fortunately, there were no hits during the travel out to Florida and we were very encouraged by this. Actually, the only issue that I had, in terms of going to Florida, wasn't even attack related, it was actually when we had arrived at the Rosen Centre Hotel; I was disembarking from the handicap van we had rented and we were unfamiliar with the seated, height clearance levels, being that when we were riding in the van, I actually stayed seat-belted in my chair, with my chair secured to the van floor. Anyway, upon exiting the van and rolling my chair out on to the side lift, the chair kicked forward and I nailed my head on the side opening of the van, snapping my head backwards into the headrest and then bouncing forward, being restrained in the chair by the seatbelt. I was knocked for a loop. Now that I think about it...I probably shouldn't even wonder why if I'm not remembering much of that part of the trip, should I? Needless to say, that did not happen again, nor did have a chance to happen again because each and every person who witnessed me in the process of going into or coming out of the van all reminded me to “watch my head and be careful”, all of which was received in the spirit it was given. The cool thing was, I woke up the next morning without a bruise and just a minor headache and by all rights I should have had quite the conversational souvenir from my head's collision with the steel frame.

Next up is my review of the Rosen Center Hotel, where we stayed for seven nights was the location of the Periodic Paralysis Conference. I should note off the top, that the hotels median price for a room with two double beds or a single king bed generally about $300. Thanks to the work of the Periodic Paralysis leaders, and the cooperation of the hotel management, the hotel lowered their nightly rate, for attendees of the conference, to $99 plus taxes. We went with the understanding that the hotel is a five-star hotel and, as such, the lowered rate is exceptional. Upon getting to the hotel and checking in, we realized that we had not really done our homework on the hotel, other than looking at their webpage in an “overview” type manner and verifying the general room prices and such. I'm sure you can probably guess where I'm heading with this and that is that the five-star rating is more so according to the hotel itself than public opinion or travel agencies and travel sites. As I began to look at several of the Internet booking sites, such as Travelocity, Expedia, Hotels.com, 1-800 hotels.com, I found that be reviewed ratings published for the Rosen center Hotel were between 3 and 4 stars, with the majority down towards 3 and 3 1/2 stars. I would have to say that, overall, our stay was around a 3 or 3 1/2. If you wanted to use the hotel's Internet service in your room it was $10 for 24 hours. If you wanted to use their exercise room it was a minimum of $10 per person per day. If you wanted a refrigerator (we needed to keep my drinks and food refrigerated during our stay so there was not much of a choice) the cost was $12 and if you want a microwave oven in your room that was an additional charge as well though I don't remember to me how much. During our first nights stay, we had not gone grocery shopping at and I needed something to drink so one of the kids went and got a small bottle of water, approximately 4 ounces from the soda machine at the end of the hall, and they paid a dollar for it. At another point, my wife went down to the deli asking for quarters so that we could do our laundry upstairs and she had to talk to the person behind the counter into giving her the change she needed because the policy of the hotel, it would appear, is that we were to use their laundry service instead of using the laundry machines. The hotel contains a restaurant or café three different types of bars including a sushi bar as well as their own deli... if you wanted a plain hamburger on a bun it cost you $15. The bottom line is to do the homework and find out it you are going to be billed via an “à la carte” approach or not.

So, having said all of that, I'd also like to share that the hotel, in general, was very well maintained in the public areas; no obvious stains, no dirty windows, no dust, cleaning staff was constantly cleaning tabletops, chairs and seats and they always asked if we were enjoying our stay. We had a few experiences where some of the hotel staff actually went out of their way to take care of a request of ours, which we greatly appreciated. It is also worth noting that the deli as well as the restaurant did what they could to accommodate our dietary constraints; my constraint is an exceptionally low salt diet as well as low carb. My aunt's dietary issue deals with needing her foods to be gluten free and in many ways is much more restrictive than mine.
Now, regarding the purpose of our trip and the primary goal of going to Orlando; the Periodic Paralysis conference itself: the conference and Saturday and Sunday but also included a greeting time on Friday evening for the attendees to meet one another and finish up any conference registration issues and also sign up for a blood draw appointment. I don't know how to describe how I felt when I first recognized the names on the nametags of the different people that had come that Friday evening. These are the people, many of whom, I have corresponded with via the HK PP list serve and only imagine what they would look like. Some of them looked nothing like what I thought they would look like while others looked similar to what I expected. As a result of the weekend conference, I am proud and happily encouraged to share that my extended family has now grown significantly because these folks and I can solidly relate to each other, and there is no question that most all of us truly care about what happens to each other and what we go through. Okay back to the conference: Actually, there was a session on Friday evening, at the end of the meeting time, where we could listen to a doctor who has designed a software for the diagnosis of neuromuscular diseases and related issues. Though the software is primarily focused and available to medical professionals, I would imagine that it could be a very helpful tool for those who are seriously searching to find out what it is that is going on, or better said what isn't going on correctly, with their body. I certainly plan to make my primary care physician aware of this software for his consideration.
For me, Saturday and Sunday were huge days, but, in my case, not so much for what I learned from the different key speakers, but because of what I learned from the other attendees. There must've been a dozen of us that had attacks on Saturday and again a dozen or so on Sunday, and Saturday was the very first day that I watched another human being suffer the same kind of attack that I have been suffering for several years and more drastically for the last three years. I saw some attacks that I would consider to be very mild and I saw other attacks that looked more vicious than most of mine. The conference planners were prepared for the attendees to have attacks; both Saturday and Sunday we had two paramedics sitting in the back of the room, for the entire conference time, helping to carry and care for those of us who went down. They also prepared a rear corner of the conference room with laid out towels, pillows and blankets so we would have someplace to go and not have to leave the room during an attack. They also had a person or persons videotape nearly all of the attacks so that these videos can be edited and then posted onto the Periodic Paralysis website for people to see in hopes of helping them determine whether or not what they are experiencing is similar or same to what they are seeing in the video, thus giving them a solid direction to pursue and investigate with their doctor.

Both of my parents took serious notes all weekend long along with aunt Judy and most certainly CC. I would have as well had I not suffered medium sized hits late Saturday morning and right after lunch on Sunday…

… to be continued

well, I'm going to have to post this as is for right now and will continue, hopefully tomorrow, with more of what I learned and experienced over this past week and earlier weekend. Consider this as part one either to or probably three posts. I began this yesterday,, and it is now 10:45 PM on Monday night and I is tired. More to come...

peace-

Leaving for the airport

2009-10-15T10:06:00.001-07:00

Leaving the hotel for the airport...

Dinner out near Daytona Beach...

2009-10-14T19:59:00.001-07:00

La Familia just outside Daytona Beach. A mini-family reunion; my family (my parents and the 4 of us) with 2 of my cousins and their families (though not all of their kids could be here for this pic.).

Well, here we r in

2009-10-08T15:43:00.001-07:00

Well, here we r in Orlando; over 5 hrs in flying time. Everything has made it through, from what we can c.
More later-
w

Sunday was and went

2009-09-28T01:24:00.001-07:00

Missy didn’t sleep good Saturday night so we had her stay home and Joshy went with CC and me to 11:15 service at Capitol Christian enter. I am able to tune into Pastor Cole’s messages and style of conversed delivery; it just works for me, as well as for CC. Pastor Cole was particularly passionate this morning and there was much to be learned for those who have ears to hears…

Right as we got to about 12:30 PM, I became aware that I could not move my feet, toes, legs or even knees, and subsequently realized that I had been holding my breath for long periods of time, something I tend to do subconsciously when I am experiencing unrelenting pain. Right about then, CC leaned over to where we could see one another and we began to exit successfully.

Getting into the van was a little bit of a challenge but with a little cooperation from my end, it went smoothly as was feasible. During the ride home I was noticing a slow increase in symptom, though I had already taken my liquid Potassium (Liquid K+).

Nothing else really transpired from the hit.

Eyes are 2 tired 2 continue…….

Difficulties

2009-09-27T00:42:00.001-07:00

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-

Long harsh attack this AM.

2009-09-17T17:33:00.001-07:00

Long harsh attack this AM. have been down for the rest of the day...

Sunday, September 13 Re-cap…

2009-09-13T22:28:00.001-07:00

I'm impressed with myself that I'm writing this long before the wee hours of the following morning... I hope this font doesn't bother you; I'm liking it at the moment.

At exactly 1:30 p.m. this afternoon 15 years ago, Melissa Mae Odum was born in Redwood City, California. Her day today was celebrated one day early with having four of her close girlfriends surprise her for an overnight stay and celebration here at our house. I guess the only significant bummer from yesterday as it would pertain directly to Missy, was that she had to run 10 miles that morning so she was very tired come the afternoon and a bit more low-key and less hyper than she might have been otherwise. Unknown amounts of caffeine later in the day, found her still awake this morning around 5 AM, the final of the four of them to fall sleep. She then slept until 10-ish and was up and going before I was (I woke up at 11:48 AM!). The girls decided that they wanted to go and see “G-force” at a 1:50 PM showing, so we all loaded up, including my motorized chair, and we headed out for an afternoon at the movies. I have learned from the past that sometimes going to the movies can be problematic for me, whether it's because of the stress in the movie or because of the temperature and climate change; going from an air-conditioned building out into hundred-plus degree heat. Fortunately, today's movie was not very stressful (I mean, we're talking guinea pigs here) and on exiting the theater, there was literally no difference in temperature from indoor to outdoor, so I escaped my known two primary “going to the movies“ issues. I did learn, unfortunately, that there is a third issue for me to consider, but that would not just be from going to a movie per se, it would apply to any period of time where I would be seated for more than an hour at a time in the chair. The third issue? Do not begin to assertively stretch immediately following a long, seated period of time. Exhibit A.: Before getting into the van, following our exit from the movie theater, I chose to do some leg and abdomen stretches before getting into the van; I was in error. Very shortly after having started the stretching of my calves and my abdomen, what first began as flutters quickly turned into spasms across my waist and my chest; the process had begun. CC and Missy helped get the liquid potassium into me and Joshua stood beside me holding my hand and encouraging me to squeeze his hand as I needed to in order to release the pain of what was going on. It did not take long for my body to go into full paralysis which was very awkward for Missy's guests who have joined us to go to the movies and had to watch all of this unfold. As we began to drive and take the girls home, Missy became my support; holding my head and my shoulders against the seat so that I would not end up ricocheting around in the front seat, during turns and stops and starts. I became infuriated with myself that this had happened on her birthday, in front of her friends, and as a result, most of the car ride home she spent in tears, resting her head against mine and quietly reminding me and encouraging me to breathe deeply and not to panic. I could do nothing to reassure her or comfort her or stop her tears until my body settled down after the potassium had fully gotten into my system, which was after the final girl was dropped off. Needless to say, it made for a very quiet ride home.
*Sigh*

CC and Missy helped me get into the house and into my black chair where I stayed for the rest of the evening while the three of them went to a roadhouse steak restaurant here in town for her birth day dinner. It's just not how I wanted the day to go or end up but there's nothing I can do to get it back or to change it and moving on is the only option. Missy, like her father, mother and brother, cherishes family and family time and, once again, thanks to a debilitating disease, we are forced to adapt our intents and our desires to the realities of minute to minute -- day to day life as filtered by HKPP. Some elements of that look a lot like the beginnings of a pity party and, perhaps inside, maybe that party is actually going on but in an underground sense; something that I need to battle and excuse myself from on my own, but there is a truth to it as well and that is that perhaps I need to be more considerate of others and my family in terms of participating or becoming involved in functions that may radically change if I suffer an attack, and by radically change I mean that some, most or all involved are negatively affected by my attack.

Tomorrow is Monday, a new day and the day that I can and may rest and recover; all I have to do is choose to do it, and if I am at all honest with myself and most all of you, I'll have to confess that choosing to rest and recover just isn't as easy as it sounds or as I want to be sometimes.

As I remember whispering to Missy while we were driving home," I'll be okay; I will get better, you'll see..."

From Tuesday through Saturday

2009-09-13T03:30:00.001-07:00

It seems that I've gotten caught up in the new speech recognition software and have blown about 45 minutes just playing around. Sigh.

Today is a new day; in its newness, one can find hope and encouragement and even refreshment should they choose to seek it. I must confess that having gone nearly 6 days straight with attacks each day, and yesterday having two attacks in one day, I'm finding it difficult to put the energy into searching for anything at the moment. That having been said, what I don't want this entry to be is a pity party or a lamenting how life can suck at times. What I do want this to be, however, is a general recounting of the last five days or so. I believe my last entry into the blog came Thursday night following a hellish day. Anytime you see a blog entry that's only got a couple lines of writing in it then I have sent that posting from my cell phone, likely either from my bed or my black chair downstairs. Most often, I use my cell phone to post a blog entry when I do not have the strength to get up and walk to the computer.

So where are we? Yesterday was Saturday, the day before my daughter’s 15th birthday, and the day came with two smaller sized hits, both of which landed me in the black chair with oxygen and the latter of the two hits found me leaning my back against the wall with my knees locked in an attempt to keep from falling and my wife in front of me with her arms under my arms, holding me up until Missy could come downstairs and help. I don't know what triggered either one of these hits, but I did have a gut feeling when I woke up that I was going to take a hit at some point during the day; under these circumstances, I do not enjoy being right other than to take confidence in my gut feelings. One attack happened in the midmorning and the second attack happened in the early afternoon. Though it has nothing to do with me, I'm very proud to share that Missy ran 10 miles today in an effort to raise money for her school cross country uniform and she ran most of the way but he regardless of speed, she finished the race on her own and I could not be more proud of her. My heart goes out and thanks to those of you that were able to support her in her pledge of running the 10 miles; thank you.

The day before yesterday, Friday, Missy had a track meet in Oroville and was gone for most the whole day. Upon returning to the school around 7:30 that night, Joshy, CC and I picked her up from school and drove to her current favorite restaurant, Denny's for an informal, celebratory dinner. By the time it was ready for us to order, I had read through their nutrition guide front to back and realized that there was nearly nothing I could eat; something I had suspected but did not know for sure. I went for the safest dish that we could think of; planes scrambled eggs and playing hashbrowns. All of us were pretty hungry, me included, so when the food came I tried a couple bites and waited for a minute or two to see if I would have any immediate reaction. Seeing no reaction initially, it did not take me long to finish off my plate of food, but, right about the point when the three of them were finished with their dinners, I was having a difficult time thinking and speaking. Most of us with periodic paralysis refer to this experience as “brain fog”, a typical precursor to an attack. If I recall correctly, both kids helped me get out to the car while CC took care of paying the bill and then we drove home and CC and Missy help me get up the stairs and into bed. I do remember that my job was locked and I was panicking because I could not open it myself, but CC applied in the end downward pressure at the base of my jaw which released my tongue and clenched jaw. After a cocktail of liquid potassium and apple juice, along with my nighttime meds, I waited for the pain meds to kick in and hoped that I would escape my body's retribution in the morning. No such luck. I realized when I woke up Saturday morning that my jaw was very, very sore and somewhat puffy on both sides; I figured out fairly quickly how to be able to maximize my verbal communications with minimizing my mouth and jaw movements. Yogurt was for breakfast.

Thursday's attack was ugly. CC and I were on our way to our PT appointment that morning and on our way there, CC, along with the pickup truck behind us, decided to change into the same lane at the same time. Our vehicles never touched each other, praise the Lord, but there was some swerving and screeching of truck tires and my body locked up. CC told me that after we had arrived in the parking lot for PT, she gave me some liquid potassium and shortly thereafter Mark came out with one of their rolling office chairs and the two of them got me from the van into the building, up the elevator and into their office and then into one of their private rooms. I have a vague recollection of the symptoms mellowing out until my chest got cold at one point and the chills began, followed by more spasms, cramps and muscle locks. I don't know how long this lasted nor do I remember much of anything after that. I understand that they got it back out to the car the same way they have brought me in and that when I was still in the office, she gave me another dose of liquid potassium which eventually mellowed out spasms and cramps. I spent the rest of the day and evening in bed and I'm not able to remember much else. Obviously, I did send from my cell phone while I was in bed; good for me.

Wednesday was Missy's Back-To-School Night and, though I have a small hit in the afternoon, the evening came out fine while we were at the high school. I am so very thankful that nothing happened to me while we were there: that would've been terribly awkward for Missy and I would've felt like trash. A borderline, small hit began on our way home from the Back-To-School Night but it did not fully manifest and I was able to get away with just taking my regular medications going to bed.

I'm kind of fuzzy on Tuesday night’s hit, but I do recall talking with CC about it and we both felt that it was a combination of three things; emotional stress, higher sodium count dinner and being physically wiped out. Unfortunately, any one of these three can be a trigger in and of itself, so after-the-fact, it was not too hard to figure out.

Okay, it's 3:17 AM and I really need to stop and go to bed now. Once again, I am so grateful for this software (may God thoroughly bless you Greg) because without it I would not have been able to have posted this blog. I also just thought about this; I can't remember if I included this in a previous blog, but this software also played a critical role in my getting help a week ago Thursday, I believe. My body had gone into nearly full paralysis during the time which I was posting to the blog and that blog entry actually depicted what was happening to me before most of the rest of the things went South. Because I still had the headset mic on my head, I was able to use the software and my right index finger to be able to send two e-mail text message to CC, for her to come home from a coffee meeting she was having with one of her good friends, because the symptoms were getting worse and the attack had begun. For whatever reason, I did not have my cell phone on me and thus was not able to speed dial her, which I have done in the past. Had it not been for the software, things could have been quite bad. My buddy Scott Shuford called tonight and he suggested that I share this experience with the makers of Dragon NaturallySpeaking as a testimonial; as per usual, I think he has a very good idea.
Okay, it's 3:26 AM now. I'm done

Hard day: attack on the

2009-09-10T21:36:00.001-07:00

Hard day: attack on the way to PT. Lasted an hour. high price today...will see about tomorrow.

Another hit 2night after dinner.

2009-09-04T21:00:00.000-07:00

Another hit 2night after dinner. Not sure why this time. It's looking like a very long weekend. Wiped. Done 4 now

Bad attack followed my last

2009-09-03T22:16:00.001-07:00

Bad attack followed my last post but I was able to voice a text msg to CC and she came 2 my rescue. Tuff & hard night.
:o(

Realizations

2009-09-03T12:25:00.001-07:00

To begin with it's worth my stating that I'm using my headset mic in order to communicate for right now. I don't know that I'll be in a position to do my normal editing before posting this, so hopefully all of this comes through clearly. That being said, I'll describe how I'm feeling at the moment in order to be able to look back on this invalidation and/or understanding; when I woke up this morning, the sheets as well as I were soaked sweat and my mind was unsettled the point that I was wondering if an attack was looming only moments away or not. As it turned out, no attack took place though I have experienced a number of normal precursors to an attack. As I am dictating this right now, I'm having to concentrate very hard to keep my words and my thoughts clear and cohesive; it is not coming easy to me right now where it did all of 15 or 20 minutes ago. In the last 5 to 10 minutes I went through another profuse sweating, from the top of my head to my feet. Along with that, I have lost most all of my strength and even opening my eyes see is a challenge. My potassium and other medicines are all downstairs while I am upstairs and I am realizing that this is problematic at this point; I'm not quite sure how to remedy this at the moment. I'm short of breath taking concentration and energy to do and that is typical when I experience the heavy sweating this isn't meant to alarm anyone because I'm sure that things will turn out like they normally do and be fine, but it is for my own validation and record of the reality of the symptoms.

I have other thoughts that I want to share but I don't think now is the time so perhaps I will do that later today. Time to sign off. I'll be back later.

I found Todd Borger's blog!

2009-09-01T16:08:00.001-07:00

The link below will take you to Todd Borger's blog. Todd was a good friend and former bandmate of Scott Rose and mine (he was/is? a drummer/writer).
Beware though, reading his blog will break your heart; in it he shares his rememberences of Anna, his 8 year old daughter who was tragically killed last May 7 while biking with her mother.
It is so, so hard to read of another father's pain and suffering, being a father myself.

My heart breaks for you Todd. Peace.

http://toddborger.wordpress.com/

-w

Remembering “Heroes” and Other Currents…

2009-09-01T14:38:00.001-07:00

Well, once again I find myself in the position of having to recall several days worth of activities as opposed to simply recalling one day at a time, because I would have been making daily or nightly blog entries. Needless to say, it's more than annoying from two main standpoints; the first standpoint is that my memory has proven to be unreliable over the past 2 1/2 years or so, due to one of the side effects of one of the main pain medication’ that I take. The second reason that it is frustrating is because I want to use this blog as a daily event and record of living with HKPP, and I know that if I do not an accurate recording of my daily living and struggles with this disease then there is less for me to learn in the long run.

Speaking of memory issues, I missed my physical therapy appointment this morning because I did not recall receiving a phone call towards the end of last week, letting me know that there was a change in location for my appointment this morning. I'm pretty sure that most who read this know and remember that I am not allowed to drive anymore (and that we only have one vehicle which CC uses for all transportations and to get herself to and from work each day), and being that I'm not allowed to drive it anymore, I need to rely on others to take time out of their days to help me get to and from appointments or events that happened during the time frame that CC is unavailable to drive me to. As was the case last Tuesday, this morning my cousin Chris gave up a good portion of his morning to come and pick me up and take me to my physical therapy appointment and the end result was that I asked him to take me to the incorrect location because I did not remember the phone call from the clinic alerting me to the change in scheduled locations. Chris did seem very cool about the snafu and even offered to take me tomorrow morning to a make-up appointment from missing today’s.

I have not been sleeping well over the past several nights and I believe that is the reason why I have either been napping or experiencing crashes each day in the afternoon to early evening hours I'm forcing myself to get up in the mornings and make sure that Josh gets off to school, which is a no-brainer and a good thing to do, but the issue is that I'm not getting to sleep in a timely manner to allow my body time enough to rejuvenate and rest from the previous days activities and waking hours; we as a family, me specifically, need to be going to bed earlier on more of a regular basis to fix the issue at hand.

As I'm writing right now, I'm using my headset microphone to dictate this blog entry and more often than not, I close my eyes and somewhat lean forward, resting against the desk as I think of what it is that I want to say and communicate. This, in another itself, is not really a problem. However, when you're tired and you lean against something and have your eyes closed, the likelihood of falling asleep is greatly increased... at least in my case it is.

About a week ago, CC and Missy coerced me into watching the first several episodes of the TV series “Heroes”, the final episode of the fifth disc of the first season's episodes, I watched late yesterday morning. Each episode is an absolute cliffhanger and, in my opinion, is superbly directed and shot and includes an excellent cast of characters and actors. I'll come back to why this is relevant in a minute or two…

Yesterday came and went without an attack; a fact that I am blessed by. To that end, I believe it has been several days now since my last attack which I think was a week ago this past weekend. Sunday was a good day in a productive day, though we all slept in to some extent and once again did not make it to church. I am more than frustrated with myself over not making attending church a high enough priority, so much so, that would out rank sleeping in. Granted, there are obviously other factors that weigh in on going to church on a Sunday morning, but I know that I have not been much of a leader in terms of getting my family into church on a weekly basis. Typically, our weekends are spent doing household pick-up and chores along with different yard projects unless the heat outside is prohibiting, but this past weekend was primarily spent indoors with Saturday being a marathon video/movie day for me, Missy and CC, while Joshua either was on the Xbox or was playing on my computer. We watched several episodes of “Heroes”on Saturday and a few more on Sunday; I think I began watching the series on either Thursday night or Friday night, along with CC and Missy who both wanted to re-watch the beginning episodes and see if they would notice anything that they may have missed the first time they saw them. I'm looking forward to getting caught up with them in terms of where they are in the series, but I am not anxious to watch the series while it is on TV because the level of stress in each episode combined with the lack of resolution at the end of each episode could certainly prove to be a contributing trigger to an attack for me; I would rather watch the series on DVD where I have better control and easier access to finishing storylines and pausing at stressful points than if I were to just be watching the show on TV.

No, I have not read anything about the possibility of their actually being a black widow *season*, but if there is such a thing,, it is now. As father of this family, it is my duty and marital responsibility to extinguish or neutralize any and all spiders that are visible or indicated. Sunday night, before finally going up stairs and going to bed, I did a thorough walk of our back patio, yard, retaining wall and garden with a can of spider insecticide and managed to dispatch well over two dozen black widows; from the very small immature ones to the largest which was nearly the size of a dime, not including its leg span. Then yesterday, I went throughout the entire yard and completely removed all spider webs that I could reach and find in order to better learn whether or not I was successful in completely eradicating the arachnids or not. Not all spiders were black widows though over two dozen or; there were some spiders that showed the same type of body shape and size but did not have a red hourglass on their belly. Unfortunately for them, as far as I am concerned, there is “guilt by association”and they are no more.

On a completely different topic it is worth noting that even though I have pushed some of my dietary boundaries within the past week, they're still have been no attacks, fortunately. I find myself, like most folks I know, experiencing cravings for different types of tastes for foods so from that standpoint, it's probably a good thing but I don't have my license and cannot drive because cravings can be very difficult to deal with at least as far as I am concerned CC was noting that last night, after eating dinner that the likely reason that I was not feeling very well was because I had some boxed, prepared pasta which is more often than not, a straightforward no-no for people with HKPP; a fairly straightforward cause and effect, if you will.

It feels and seems like my creativity has run shallow again and that I have very little to contribute, creatively speaking . I have half-done musical projects and musical ideas that are just sitting, waiting to be addressed and/or finished. Bleh.

Both kids are doing well in school and enjoying their classes and their friends and, from all that I can tell, both are doing well being in separate schools which is a first for them. During the summer Missy joined her high school's cross country team and she has been practicing and learning through part of the summer what all of that entails. This past Friday was the school’s first cross country meet which took place in Lodi. Missy and her team were taken via bus to the load I meet where she competed for the first time. Her mom and I are so very proud of her, it's beyond words. It was a huge step for her (not to mention a slightly large step of stress for her father who worries about her traveling to and from field trips and other excursions)

Well, my brain feels like it is emptying out of the different things that I wanted to share. I do think its important to relate that, all things considered, which includes the past nearly 3 years, our management of this disease is currently giving me the highest degree of normalcy that I have had since my diagnosis. By no means am I anywhere near what I would have termed to be normal over three years ago, but it has been a very long time since I have been taken to an ER via family or ambulance and nearly all attacks are manageable without the need of medical assistance. I do have some other random thoughts as they pertain to daily life but I am more tired than I am inspired at this point. It is time to call it for now.

Peace

Wednesday PM

2009-08-26T20:27:00.001-07:00

No hits today, thankfully. The highlight of the day was a good friend calling to say that he had some errands to do and offered for me to join him for a couple hours. Very cool. What may be mundane for some might be the difference for others; you never know…I had a good time hanging and talking outside the confines of the house.

Not much more to report for today, though I was able to take a couple hour nap…that seems to be a need for me these days. Hard for me to tell if it is due to needing sleep or if I am crashing in some manner.

On to tomorrow-

peace

Quick Note

2009-08-24T22:20:00.001-07:00

Just a quick catch up to share that we went to Sacramento’s performance of “Cat’s” last night, which was fun to do as a family though I paid the price as we were leaving with a fairly full hit (though more brief than others) on the way home.

Today saw no “hits” per se, but I did suffer a crash in the afternoon that I could barely wake up from; I must have slept for a couple hours solid. It cost me time playing with Joshy which had me mad at myself. I know it sounds odd, but I think it might have been a result from eating a sugarless candy; though the candy does not have direct sugars in them, they have a sugar alcohol noted in the carbs section and I’m wondering about that. I went down pretty fast. Dunno.

CC had an outpatient surgery to remove a cyst from the center of her back. I was allowed to be in the room with the surgeon and nurse during the procedure. CC amazes me; her pain threshold surprises even most doctors and her strength is unquestionably God-given. What we thought was a small marble-size cyst has actually gone deeper into her back and was not spherical in shape, to our surprise, nor was it as small as surmised. End result, she’s got a recovering wound in the center of her back and the *duty*/responsibility tables are now turned, in that, she cannot pick up, lift, stretch for, push or pull without risking opening her stitches, and WE must cover EVERY aspect for her so that her recovery is complete and without complication. Anticipation and calculation are going to be key ingredients over the next couple weeks.

Both kids began schools today: Missy as a Freshman and Joshy as a 5th grader. They both reported having great days at school and seeing friends.

Lastly, I don’t know about your neck of the woods now, but around here, it is Black Widow season and I’ve got Widow webs all over the yards, patio and even retaining walls. I HATE Black Widows. There…that oughta give you good dreams… :o)

That's it for now-

peace

Coming Back

2009-08-19T21:58:00.001-07:00

Today is Wednesday, August 19, 2009 and it has been quite some time since I've actually posted legitimately. Much has gone on in the last number of weeks, starting with our first attempt at a mini -- vacation down to Monterey for four days which went very well. This past Sunday night, marked the end of a seven day venture up into Oregon, where we stayed in a cabin, right on the Metolius River in Camp Sherman, just outside of Sisters, Oregon. The way that the trip worked out to be, was that Joshua went up with my sister and her family on Friday and met my parents, who also went up on Friday, at the cabin while CC, I and Missy stayed behind and left on Sunday morning because we were invited to a wonderful wedding on Saturday that we could not miss. Towards the end of the week, CC and Missy needed to head back down on Thursday so that they could be at Missy's high school orientation meeting on Friday morning but Joshi and I remained at the cabin with my parents and my sister's family until Sunday morning when we all left to come back down.

This Oregon trip was not without attacks but fortunately those attacks were easily managed and easily recovered from; in the big global picture of HK PP and it's harassing attacks, I'm a very blessed and fortunate man to be able to get up and walk a matter of hours after being struck down. There is a listserv of folks who are contending with one form or another of periodic paralysis and a number of those people fight every day for some element of normalcy, just as I and we did in the past 2 1/2 years, and I believe that I need to be mindful of the blessings that I have and the degree of normalcy that I do have now and read my own writing to accept that every day is a gift but the shape and the wrappings may be different.

I took a lot of pictures with my cell phone and I plan to post those pictures at one point or another, either here through the blog or on my Facebook page; the plan being that if it's on Facebook that everyone would still be able to see the pictures even if you're not a Facebook subscriber.

If I were to choose my most favorite activity of this Oregon trip it would be the few times that we were able to go up to a mountain quarry area and fire off several rounds from my Ithaca 16-gauge shotgun, my Marlin .22 lever-action saddle gun and a good friend's .22 caliber rifle with scope. I'm not exactly sure of how many rounds we actually shot off in terms of the .22 caliber guns, but we did shoot off somewhere in the ballpark of 75 shots with the 16-gauge. What was most enjoyable to me regarding the shooting, was that everyone had the opportunity an invitation to shoot any one of the guns (and most everyone did shoot the .22) and that even Joshy tried shooting the 16-gauge (as did my brother in law CP, my sister Mindy, my niece Kirsten and my nephew Erik). At the end of our last shooting excursion for this trip, I knew that I was coming home with a much more comfortable feeling of shooting my 16-gauge that I've had in probably over 30 years. It was a real confidence booster for me.
As far as the trip goes, I know there's much more that I could share but my mind is drawing blanks at the moment I'm getting kind of hazy on details so I will hold off until I have a clearer head to recount other days activities.

In terms of attacks, I did not have any attacks during our travels but I did have an attack manifest when we were returning from an excursion to one of the local lakes; I think that I got cold and that became the trigger. The other attack was after being at the cabin for some period of time and realizing that I was getting week very quickly and would have been in a very awkward position without getting assistance to the couch in the cabin.

After returning home, Monday was spent recalibrating and resting which past events free. Yesterday was my first physical therapy in over a week and things felt very good and I was encouraged; looking forward to Thursday's PT appointment in hopes of being able to do some exercises as well as the stretching.

Today, unfortunately, did include an attack which began right after finishing our lunch at Red Robin; we have come to recognize that when attacks happen while at or just after a restaurant, they are more than likely triggered by sodium or possible high carb intake and in this case I believe it was a sodium issue. After returning straight home, I was able to walk into the house on my own and get myself into my chair but shortly thereafter things kicked into gear and I was down for the next five or so hours and my son was very very disappointed that I was not able to play Xbox with him as he had been hoping during lunch; it's been nearly a solid three years of battling this disease on a daily basis and yet it still crushes me when I am not able to keep my intentions or commitments and I hear the disappointment in the voice of my wife, my daughter or my son, as our plans changed radically because of the attack. I'm willing to bet you that they don't write about these types of things in the medical journals when they talk about people who suffer from HKPP... Maybe they should. And then there are the doctors who suggest and scoff that we really aren't suffering anything in the physiological sense but that it's all in our heads. Shame on those who would think that I would choose to put my family through this, let alone myself

Well, before this gets too much darker... I think I will close out this post with a strong reminder that regardless of how I may feel and regardless of what triggers may come and regardless of the outcome of those attacks, my God still holds me in His hands and this disease cannot change that.

Please pray for a good nights sleep and also, please be praying for my dad who is recovering from knee surgery. My prayers are that he would recover fully and be rejuvenated by the results of the surgery and that there would be no complications no issues no problems whatsoever; those are my prayers.

Peace.

Greetings from Sisters Oregon- Today

2009-08-15T11:10:00.001-07:00

Greetings from Sisters Oregon-
Today is r last day here & we will b driving back tomorrow. No real cell reception here...

A pic from Scout Lake in Oregon...just beautiful...

2009-08-12T17:57:00.001-07:00

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What happens when an empty soday can meets a 16 guage shotgun... :o)

2009-08-12T13:08:00.000-07:00

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Today's bikers to a near-by lake!

2009-08-12T13:04:00.001-07:00

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Nothing Witty at the Moment…

2009-07-28T23:46:00.001-07:00

Sorry it’s been a while…again. Another crash today; that makes 3 crashes in 4 days. All of them, as far as we can discern, are due to the heat and my exposure to it. That sucks. And it sucks more-so because, for the foreseeable future, the temps are going to be in the mid-90’s or low 100’s. There are definitely points where I wonder if we should just go to the ER in hopes of some sort of physiological re-set of my system, but it seems that every ER visit is an actual battle just to get proper care and I certainly CANNOT go in without someone with me as my advocate there and then, otherwise I would be triggered into an even larger attack, we’re certain.

Today’s attack came while at Joshua’s “Summer Olympics” at his gymnastics center. Praise God that I was with CC and Missy, along with Aunt Judy, Uncle Norman and my cousin Chris, all who came to support Joshua and be there to see him. I remember the whole time while there and was able to see him take the small stand and receive his medal. I could not have been more proud and was humbled that the Clark’s wanted to be there and were able to make it work. I know that my parents and my sister’s family would have come up too, if they could have made it work, but it wasn’t feasible and we all understood that, including Joshua.

I still have the Monterey pics to post up, which I will likely post here as well as Facebook, though that is twice the work. If I can figure out a way for you-all to see the pics on my Facebook page then I will just post them once and link it here in the blog.

Well, that will have to be it for now. More to come…

peace-

Monterey Blessing...

2009-07-22T11:17:00.001-07:00

This is a pic of Sierra (Ash) and me in Monterey. My heart was filled and greatly blessed by the opportunity to see her and her daddy, Sam Harman.
:o)

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14 years in the making..Sam & Wade

2009-07-19T17:06:00.001-07:00

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We are at Rio Del Mar Beach for the afternoon!!

2009-07-18T17:41:00.001-07:00

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Can you guess what was for dinner...?

2009-07-17T18:59:00.001-07:00

We ate dinner at the Fish Hopper in Monterey and not only did CC and I get Filet Mignon AND lobster (we both ate for $20 each), but they prepared EVERYTHING for me with no salt! Absolutely fantastic!
After spending the entire day at the aquarium (from 11:00 am till 6:00 pm), we ate a wonderful meal sitting by a bay window overlooking the Bay itself and watching otters and seals playing.
God has blessed this day.
Now, we go back to our motel room with the 4 person jacuzzi in it!! I can do this.

:o)

Scuba Joshua!

2009-07-17T15:07:00.000-07:00

Joshy scubas in Monterey!!

2009-07-17T14:55:00.001-07:00

Joshy goes scuba diving!!

2009-07-17T14:48:00.001-07:00

Sorry this is sideways (as are a few more); when I get back home, I will orient them correctly. :o)

Lunch in the Aquarium Cafe'...

2009-07-17T12:13:00.000-07:00

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the tat...

2009-07-16T21:02:00.001-07:00

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Missy getting an air brush tattoo...

2009-07-16T20:59:00.001-07:00

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2009-07-16T18:58:00.000-07:00

More Boardwalk...!
Oh yeah...and a WONDERFUL 71 degrees!!

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2009-07-16T18:15:00.001-07:00

...at the Boardwalk in Santa Cruz!

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2009-07-16T13:10:00.001-07:00

Our 1st day in Monterey in several years and having breakfast at "Grandma's"; our last time here was 14 years ago. Too cool.
We are excited.

Last night's ride to the Bay Area came with a cost but it was paid and we kept on going and arrived after a total of 6 hours driving.

Time to eat!
peace-

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We are driving down 101-South

2009-07-15T22:02:00.001-07:00

We are driving down 101-South through San Jose...a couple of hours from my favorite location in CA: Monterey.

Friday Night Now

2009-07-10T21:42:00.001-07:00

As of right now, 9:16 PM on Friday night, I'm working on relaxing at the end of a fairly tiring day, yet not a bad day. The highlight of today was taking any for a walk over at the park that's close by our house. Missy had a friend sleepover last night so the two girls along with Josh and my parents and I all went over to the park, along with Annie. I took any for two loops around the entire park while the kids rode bikes in the scooter and explored the park in the creek that runs through it. A landmark for today is that my dad wrote my bike over to the park and that the first time he has been on a bike in over 20 years, according to him; that we'll see how he feels tomorrow...
the temperatures were in the low 80's and I had plenty of water with me, so all in all I think everything went very well. I ran my chair until it had barely any battery life left and was able to ride home with it as well.

No attacks today and no crashes; after being out for as long as we were at the park, I thought it was quite possible that there might be a crash or a hit that would take place simply due to my being in the sun and the heat and being "on", but I am blessed to say that nothing negative transpired (other than a lady walking to small to medium size dog's who did not keep them on a short leash when they passed by me and Annie; one of the dogs continued to bark but did not come close to her while the other dog lunged at her four or five times without the owner doing much about keeping it away from any. At one point I was able to reach past Annie with my left arm and knock the dog about 4 or 5 feet away; and the lady kept walking, never said sorry, never apologized, nothing. Space space here I am protecting 100 pound dog from two 20 or 30 pound dogs, when in fact I'm actually protecting the two dogs, in reality. I'm pretty sure if I had let Annie go or if I had given any any length of leash at all she would've made short work of the two obnoxious pets.)

Well, I've been writing for about 30 minutes now and I'm tired. More later --

peace

Can't sleep

2009-07-08T03:12:00.001-07:00

So it's 2:37 in the morning Wednesday morning and I woke up from a very light sleep about 45 minutes ago and I'm waiting for some of the medicine that helps me sleep, to take effect. It seems, over the last two or three weeks that my body sweats have been very pronounced during the night and morning while in bed. At first I thought that had directly to do with what I was eating just before going to bed but there were a number of nights where I didn't have anything to eat just before going to bed than the food that I had had which had been consumed four or five hours prior to going to bed, so I guess that means I have no idea, yet again, as to what the hell's going on with my body. I would much rather be in bed dreaming and resting right now than sitting here at the computer typing. Praise God for Greg Kopchinsky and his gift of dictation software to me, for with out it at this specific time, I wouldn't be able to be typing or focusing my thoughts in such a way as to be able to type.

I did have a crash this afternoon, actually this evening. Just as dinner was starting, I could tell that things were slowly headed south (as opposed to quickly), so I poured some potassium and drank that and went ahead and had dinner with my parents and family and Sean O'Brien who had come and was visiting for a good part of the day. By the end of dinner it was difficult for me to focus and so Joshy helped me walk into the house (we were eating outside). Shortly thereafter, I was in my chair and could feel all of my strength and my energy and ability to focus, ebbing away; it is in some ways, surreal to experience some of these attacks; I know they must look completely different to the person standing by and watching it. So far to date, I'm too embarrassed or vain to want to video record what I look like when the attacks happened, though I know that it could quite possibly be a very effective tool once we find a doctor who will take me on and take an interest in seeing my disease managed in a more efficient manner than just living day to day, waiting for the hits to come; in some cases literally counting the minutes before all hell would break loose.

Yesterday morning, Tuesday, I slept in fairly late but was able to get up in time to go to my 10:30 physical therapy appointment in Antelope. Things went well during the appointment, although I chose not to do any of the weights or exercises just because I wasn't feeling confident on how the rest of the day would turn out to be. Following physical therapy, my mom dropped me off at home and she left to pick up Missy from school and my dad and I got out my rifle and shotgun in prepare them for taking to the gun range in Rancho Cordova. My friend Sean O'Brien came over and he, along with my son Josh, went with us. We stayed at the range and shot for couple hours with my rifle and another .22 rifle we rented there at the range and had a pretty good time, all in all. The only exception that took place with me was that a person standing two booths to my left, shooting a higher caliber rifle, whose ejecting shells from his rifle were kicking out of the gun at a fairly good speed, (most of the time landing on top of Sean's head or my platform, or even further down away from us) came towards the end of our shooting time when the gentleman shot the target and the ejected shell flew directly towards my face and lodged its very hot metal casing in between the skin of my left eye and my glasses, so it held there for a moment until I could yank my glasses off and get the shell casing off of me. After doing so, we took a look at it and I have a couple small burns and bruises where it landed but I'm so, so very grateful that it did not actually hit my eye which was just a quarter of an inch away. That was a little scary and it definitely was a lesson as well, in that, when I go shooting the next time I will make sure that I have large piece of cardboard on my left to prevent any shells from popping over from one booth to the other.

It is now 3:08 AM and I'm going to try it back to sleep.
Today's crash is the first in the past five days, so in and of itself, that is good news according to my daily life.

It’s Been a While…

2009-07-06T22:37:00.001-07:00

Where to begin? It’s been so long since I last posted. It kind of snowballs on itself, in that I feel frustrated and bad that I haven’t written and caught up here that I put it off, waiting in some sense to have more information to write and share, but the reality is that I should be just journaling daily and that would solve the issue. Of course, now that I think more about it and remember how I have been over the last couple weeks, I realize that I’ve had numerous hits/attacks that have interrupted all daily flow and plans, and I need to keep that in mind before I continue to rag on myself for my blogging absence. Same old, same old, I suppose.

Well, it's taken a long while for me to be able to get the new speech recognition software "Dragon NaturallySpeaking 10" installed onto this computer, because I was unfamiliar with the sound card layout of this computer; none of the plug-in locations on the sound card have any labels so it was a matter of trial and error to find out which one was the microphone input. Success. Of course, by using the recognition software, I'm likely to be much more verbose than I would be if I were just to be typing... :-)

My parents have come to visit for this week; they were in Oregon all of last week visiting a very dear friend of theirs who was celebrating her 97th birthday. On their way home to the Bay Area, they decided to come by our house and hang with us for the week. I expect that this week will be a pretty mellow week because we have no major things planned and no major accomplishments to be reached. Cc garden is doing really very well in the backyard; she planted corn, watermelon, tomatoes, squash, and pumpkins and all are growing just fine. It's the first time she's ever had a garden of any substantial nature, so she's very excited about this end we are all excited to see everything growing, to see the "fruits of our labor", so to speak. I need to post some pictures of our little garden... maybe I can get that done in my next post.

As for me and my health, over the last week or so, it seems that I've been getting between one and two days in between attacks which is better than no days in between attacks, but I sure would like to have more time than that in between the hits. Most of the time, were able to discern what the triggers have been for the attacks, but not in every case.

It’s 10:35 and I’m going to get this one posted and then see about another more complete one tomorrow.

Peace-

Father’s Day Close

2009-06-22T00:30:00.001-07:00

Today was a gift, in many ways; of key significance, no attacks and no crashes. Following up to that, Missy gave me a wonderful choker/necklace for everyday wearing, I got to go on a shopping run with CC to Lowes and I got some neat one-on-one time with Joshy, just cuddling and listening to music this morning. On any given day, just one of these would in actuality be a treat and blessing for me, but to include them all in one day was truly a blessing and gift, in my opinion.

Yesterday afternoon was a very good time, in that we went to our close friends’, Sean and Tiffany, who live in Davis. We spent the better part of the evening there and, though I did crash, the evening was not destroyed and I was able to rest/sleep off the crash until it was time to go home and they got me out to the car and we left with no casualties on my end and the embarrassment was lessened due to the closeness of friendship and our 30-some-odd years of friendship with Sean. We all had a good time.

I’ve found some White Stone recordings and am trying to lift them from a 4 track reel to reel tape using a 2 track machine running at half speed. Sorry Mike, for taking so long to accomplish this and Sam, surprise…I was hoping to get them done and just email them to you, but it’s taking a long time to get done.

And just for my own record, Merrill Osmond of the Osmond Brothers (yes, the originals) had one of the very best “rock” voices on record, again, in my opinion. Great *rasp* when needed and solid pitch and melodic range.

So, that’s it in a brief note. I know I’m forgetting some things I would like to include, but at this point, it’s a no-go for tonight/this morning. Praise God for a good day spent.

peace