Sunday, December 28, 2008

Sunday Evening

Sunday, December 28, 2008

My younger brother (in life), Scott Shuford and his wife Kyle and their son Madison, came up on Friday to visit us and his uncle & aunt (in Lincoln). The drove up from near Aliso Viejo (sp?)in Southern California. Due to the distance, we don't get to see one another much, so ANY visit is a blessing and never long enough. Certainly one of the more significant things that has changed within me, due to this stinkin' disease, is that I NOW value my time and moments with my family and friends as I always should have, not as I have in the past; I value them as I do my ability to breathe. I've known Scotty since he was in 8th grade and I was a sophomore in high school. We have been brothers since that time; inseparable throughout '79 - 85' or '86 and after that, never out of touch. He's my brother. He's my friend. I cannot imagine life without him; he's a part of me, and I'm grateful to God for him.

We spent the day with them on Saturday, which was great, and closed the day at our house, just hanging out over snacks and a wonderful dinner prepared by CC. After dinner at some point, I don't know what time it was, the brain fog hit quick and I became unable to see again, as well as exhausted. CC helped me upstairs and into bed and then went and hung out more with them until they wanted to head home.

I woke up this morning and felt like I had been kicked in the stomach and chest, with my ribs in serious pain; in tears at a few points because I simply couldn't help it. CC had told me to take my meds right when I got up, but I got distracted with emails and thus the pain got worse faster and I ended up behind the pain curve.
I HATE being that way, and I ESPECIALLY HATE being that way around my family and visiting friends. I took my meds and they eventually took good effect and relieved me of the severe aspects of the hurt.

We went to Capitol Christian Church this morning and it was JUST what I was needing, selfishly anyway. If I get my act together soon, I'll post some of the pics I took; they do it up right.

I should also share that CC and I were able to buy a HUGE gift for Missy and Joshy; a XBox 360. Joshy's been on it ever since Christmas night, and now with Madison visiting, the two of them have been playing it like crazy and having a great time (except for when Joshy gets mad at it for beating him). The responses I got from my querey on Facebbok regarding which system to buy, were pretty well split down the middle between XBox 360 and Wii. I did tons of homework and research on both and decided that the XBox was more a better fit for us than the Wii.

I'm really getting tired so I'll be closing, but I need to share with you that one of my closest brothers, Harry Reynolds, was in a car accident on Christmas morning while on his way up from Long Beach to San Carlos. He's banged up and badly bruised but didn't break anything or end up with any internal injuries, praise God. His truck rolled multiple times and is done, so he needs a vehicle now and has very little to work with to make that happen, I think, so I share this because I'm asking for your prayerful support of him while he continues to recover. Please pray for his continued healing and that any torn ligaments or muscles will be supernaturally healed and mended and that God will provide for him another truck or vehicle to meet his needs ASAP. It breaks my heart not to be there with him and help in some way, so this is all I can think to do at this point. Please, do be praying for him during this time.

Also, prayers for the attacks to mellow out would be coveted as well...

Friday, December 26, 2008

Yesterday & today were very

Yesterday & today were very good days. At 3ish today I suffered another hit and was down over 5 hours.
Going to bed now.

Wednesday, December 24, 2008

The Odums of Orangevale: 2008 in Review

The Odums of Orangevale
2008 in Review


Warmest greetings and God’s blessings to each of you who are reading this. We, as a family, believe that Jesus is the answer to every soul’s question, and especially during this time of celebrating the Christ Mass, i.e. Christmas, we are constantly reminded and always learning how much God truly does love and care for His people. It’s been years since we have sent out a *legit* Christmas card and family update, so, just two days before Christmas, we have created this collection of thoughts to share with you all.

2008 brought many, many blessings including:
• A 2 story rental home that’s closer to the kid’s school as well as giving both kids their own room and an office for me
• “Closure” to our home on Primrose
• 2 motorized chairs: one for our home here in Orangevale and one for me to use at my parent’s house in San Carlos
• Motorized adjustable beds (gifted to us by very dear family friends form the Bay Area) which allow us better sleep options and care ability during attack and recoveries.
• 2 chair/recliners for our living room (which are well suited for me to be in if during an attack.)
• A cell phone (daddy’s old one) for Missy. She’s “off the hook” happy about it……get it? “Off the hook”…um…okay…moving on now….
• Reconnection with friends from Jr. high, High school and even college and churches via Facebook.com
• Closer friendships and family relations.
• Blessings, prayers and support from our FOP, MPPC & TPC families

Missy says “COOKIE!!” (Missy loves random things and words, so her random word currently is “cookie”…don’t ask me, I only live here)
Okay, anyway, as we continue, Missy is up next and is standing tall (actually, she is taller than her mother, even as I type!) in the face of her oncoming teen years and scholastic academics. Wow. That read pretty cool. She’s’ doing great with her grades and is loving school.
Missy turned 14 this past September and is the most comfortable she’s ever been at school. Of course, she’s an eighth grader this year and is enjoying looking down the class ladder. While enjoying being in the *ruling grade* this year, she realizes that next year will bring a very different but exciting new year for her as she will begin…HIGH SCHOOL!!!! She can’t wait. Many of her friends are going to go to the same high school that she will attend, so she will have a core group of friends to transition with. Very cool!
She also played soccer this year and really enjoyed it, As the season progressed, she became more and more confident and accurate with her kicks and passes and she did a great job! She says that she especially enjoyed the weekly practice scrimmages with the boys’ teams and BEATING them!!! This year also brought many slumber parties and marathon cartoon watching, but the thing she loves most to do is…read. She is just devouring books, one after another! I just get dizzy trying to keep up with who is who in which book at what time in what part of what series…see what I mean? Her mom and I are so excited for her to have such a desire and ability to read like this at this age.

Joshua says “Hi!”

On May 6th of 2008, Joshua turned 9 years old; an occasion that was filled with fun and excitement. He notes that this was our first year in this home and he really likes this house the most!
He has been enjoying laser tag, playing as much as possible being that it is one of his favorite games to go and play with friends.
In Orangevale Soccer, he says he had a really fun time and even learned how to head the ball during a game (as well as practice).
His favorite games at school are Two-Touch and Prisoner (plus he loves to tease the girls at any opportunity, though he does not like getting the resulting *kick* that usually follows…) When asked what his favorite subject in school is, he said “recess”…smart guy. After much consideration, he says Reading is his *favorite* subject, if he had to choose. His grades accurately reflect his enjoyment of school and the hard work he puts in and we are very proud of him!
While at home, he says that playing video games on Daddy’s computer is the “funnest” thing to do, but he is always amazed by how many hours go away while he is battling in the universe in Lego Star Wars, as well as “Star Wars: Empire at War”. His longest game session to date is 8 hours and he wants to make it to 24 hours…Daddy doesn’t think that’s going to happen any time soon, but he can dream, can’t he? He also loves to ride his bike and rough-house with Annie, our dog (Annie, incidentally, outweighs him by a good thirty to forty pounds!) Joshy also loves playing with his Legos, making up battles with his toys (all over the house) and riding on his Daddy’s lap while on his motorized chair returning home from church.


CC says “Merry Christmas!”
Probably THE busiest Super Mom-Super Wife-Superwoman that has ever NOT donned a cape (not that we’ve seen anyway…). She handles all Odum inbound and outbound traffic, is the nurse for sick children and husband, often taking care of dishes, laundry, vacuuming and carpet cleaning ALL THE WHILE earning exemplary certificates from her work!!!... SIMULTANEOUSLY EVEN!!!!! She flat-out amazes me all the time.
This Christmas season, she has been able to decorate more to her liking because we have now gone through nearly all of our ‘garage Boxes” that we have toted from home to home for several years and many homes. This year, her decorations are perfectly and intentionally placed throughout the house, from one end to the other, including Christmas lights around the tree, the living room windows, fireplace, cabinet and even Annie’s crate! In spite of all of the different life circumstances that could be bringing her down to a crawl on all fronts, CC just keeps on getting it done and blessing everyone she comes into contact with. I am THE MOST BLESSED man on the planet…granted, I’m a tad bit biased, but it’s true! Whenever she is able to create a window of down-time, she likes to read, assemble a jigsaw or play a board game with me and the kids.


Wade says “Step by step, rung by rung…Merry Christmas!”
See?! THAT’S what happens when you are listening to Huey Lewis while thinking of a title for your next person’s paragraph (which in THIS case just happened to be mine!) Let that be a lesson to you writers out there. Don’t Huey and write.
Okay, this letter will be going to some folks who may not know what has been going on with me or us for the last few years, so those of you who are in the know, please forgive the familiar information while I share a somewhat brief “Catch me up”: In September of 2006, after only 3 years at Fair Oaks Presbyterian Church as their Director of Media Technologies and over 8 years in the Media Ministry itself, and over 20 years as a live Sound/Recording Engineer in the Christian Music Industry as a songwriter/arranger, musician & vocalist…, my working tenure in those trades came to an abrupt close after I was diagnosed with a rare debilitating and progressive muscle disease called Hypokalemic Periodic Paralysis (HKPP). Essentially, HKPP means that my body does not process or utilize potassium correctly, and as a result, I suffer attacks of paralysis and seizure-like episodes of muscle spasms, sometimes even daily. Each attack results in some degree of permanent muscle damage and resulting chronic pain. That’s the quick and short of it.
As a result, our family world has changed in dramatic ways, as has our income, our outflow and our faithful infrastructure. God has PROVEN to me that He cares for the lowly, the fallen, the broken, the fallible and the obviously tarnished. During a time of prayer in my house a few months ago, with a very good friend, I heard my own voice say “…my body may be broken, but my spirit is not” and that single phrase pretty well encapsulates my battled frame of mind, from day to day. He does not give us more than we can handle WITH HIM and believe me, I AM THANKFUL He is with me, even now. Though I cannot drive anymore or walk long distances (I now have a motorized chair), my depth of gratitude for “the simple things” I have taken for granted, has deepened immeasurably and seems to deepen a bit each day. If it was Thanksgiving, I would list some of the many, many things that I am tangibly thankful for now, and that list would likely read of obvious simple things like being able to still walk, to be able to still see, to hold my wife and my children and to just go out to dinner…
This year has brought me back in touch with friends and family that I have not seen or connected with in quite some time, prior to this year. I became connected with Facebook.com and before too long, I was connecting with people form my past as well as folks from my present and those relationships have proven very encouraging and a source of strength to me. My hope and prayer is that 2009 will bring wellness, happiness, stability and warmth of friendships and love of family to our home, even every day of the New Year.


Shadow says “…MeowwwRauuuuw” (which I think means “Merry Christmas. Now leave me until I demand more food. You may leave now.”)
CC brought Shadow home to us while we were living in Orange County, just a month or so after we had gotten married in September of 1989. Shadow considered herself “Feline Grand Poobah, Queen of the Roost” until 1984 when I brought home an adorable kitten (Jazzy) from outside the local Safeway where his owner was giving away his kitten siblings on a very cold winter’s night. The last straw for Shadow’s rule was In September of that same year when Missy was born; from that time one, Shadow developed her own little “Kitty-tude” in response to loosing her position as Feline Grand Poobah and has maintained it ever since. She too, has been a faithful, yet ever-so-slightly-temperamental feline companion over these past many years.
In 2007, we lost our beloved Jazzy, rather suddenly to a sudden kidney illness and it took a few months for ALL of us, including Shadow, to get through the mourning and heartbreak.
This year, 2008, brought Shadow’s 19th birthday and, though she is now a very skinny “Shadowcat”, her personality is ever present and she is just as cranky as she ever was and just a tad hard of hearing.


Annie says “…Woof…rrrrrrwoof…rrrrrrrrruuf woof!” (which I’m pretty sure means “I love you all, now WHERE’S THE CAT WHO’S LIVING UPSTAIRS IN YOUR BEDROOM??? I WANNA PLAY TAG!!!)
Annie’s 3rd birthday was this year and she has reached her nominal weight of 95 lbs. She is our Doberman/Hound/Shepherd mix and family companion. Just a few months back, while the kids and I were upstairs and CC was at work, a “visitor” decided to “visit” our home through the rear sliding glass door. I heard the door, as did Annie, but I never got to meet our “visitor” because Annie chased him into the back yard and over our side fence where he made it out to the street and into the neighborhood. I have always hoped that our dog would “do the right thing” when confronted with a thief or an attacker, and I am THOROUGHLY confident that we are as safe as can be with our beloved Annie on the watch. She is my pal and my guard when I am home alone when the kids are in school and CC is at work. I take her for walks around our little neighborhood with her wearing a chest harness and leash with me in my motorized chair; we have a great time together and she has become quite strong now, being able to actually pull my chair and me together; over 400 lbs combined weight! She’s tipped me over a couple of time due to her strength as well as my not being prepared, but I am far wiser for it now. She’s a loyal and best friend and our family’s defender (besides my shotgun and rifle, but that’s for another time… )


Well, that’s the best I can do to bring y’all up to date on us here Odums. We miss and love you all and hope to be able to see or hear from each of you this coming year, 2009!

May God’s peace and His blessings be manifested within you and about you and may His face shine upon you and bring you His peace.

Merry Christmas!!

With love-

Wade, CC, Missy, Joshua, Shadow and Annie

Tuesday, December 23, 2008

We are in attendance of the final Nutcracker Ballet of Sacramento's 2008 season!
Our hope was to see the Nutcracker this winter but not the version being done in San Francisco; it was too different from the original.
Peace.

Sunday, December 21, 2008

Sunday night = pain

Yesterday included 3 smaller hhits wich knocked me down each time and prevented anything good.
Today we were at a party for my little brother Kevin Kern's son Austin. I made it a coulpe hours but had a medium to hard hit and had to be wheeled out and put in the van. to go home.
every muscle hurts.typing hurts, seeing hurts, blinking hurts and breathing hurts.
This sucks. I wonder if I'll walk tomorrow.

Joshy playing with Big Uncle Kevin!

Monday, December 15, 2008

Grrr....Time to get caught up

Monday, December 15, 2008

I feel like a schmo for not having gotten back to this before now. And, even now, I am writing from the downstairs computer due to convenience of access and emergence of thought, instead of collecting and organizing my thoughts and then heading upstairs to sit in the office and write from there.

Before getting to more home-oriented and personal life focused sharing, I must comment on a couple things that were "news-worthy" as of this morning's Associated Press and New York Times. Don't ask me why I was reading the New York Times...I have no good reason other than simply following page links which caught my eye. Anyway...
...in an article by Peter Baker of the New York Times called "Acid Test: The Lasting Effects of Political Poison", Published: December 13, 2008, wrote a nearly 1,300 word perspective of comparisons between Clinton's 1998 impeachment proceedings and Obama's intentional, immediate distancing of himself and his cabinet from the governor of Illinois Rod Blagojevich scandal.

How are these two comparable? Because Obama has hired on 3 of Clinton's former team from that time period, each of whom went through the fire with Clinton and "learned", as a result, how to initiate damage control at the first outbreak of insinuated impropriety, whether legitimate (as in Clinton's case, though Bake downplays the severity of Clinton's betrayal of Office and moral confidence) or speculated (as in Obama's situation with Blagojevich). In the latter situation, Baker makes sure to note that "Even though Mr. Obama had no known personal involvement, the Clinton veterans understood that was only part of the issue. They had Mr. Obama publicly declare he had never spoken with Gov. Rod R. Blagojevich about the Senate appointment. They imposed a cone of silence on colleagues so they would not make a remark that could come back to haunt them. And they ordered an internal inquiry to document any contacts with the governor’s advisers." The dust hasn't nearly settled and the American public does not have many of the facts regarding the Blagojevich situation, but even the press has begun its campaign to make sure that all readers understand that Obama is completely innocent of any wrongdoing, well before there is any conclusion. Do I think Obama has any responsibility in the whole deal or is involved in any way? I have no clue and would not begin to say one way or another, but apparently Mr. Baker of the NYT knows better and wants his readers to understand from the outset that Obama is clean regarding this mess. Damage control before admission of knowledge of possible improprieties, as instructed by former Clinton advisers who are considered battle-ready political warriors, due to their "service" with a president who I consider to be shameful and boastfully dishonest. Baker notes in the beginning of his article that Clinton was acquitted by the senate, which I read as saying he was found not guilty of wrong-doing, but then later he states “the Senate fell short of the two-thirds needed for conviction. Mr. Clinton was later found in contempt of court by a federal judge and, in his last hours in office, cut a deal with federal prosecutors admitting he did not tell the truth under oath and accepting disbarment.” He wasn’t found innocent; he was not convicted because not enough politicians voted to have him impeached. Not only did he break the law and then get away with it because he was the president, he now gets paid millions of millions of dollars on the lecture circuit, partly due to his notoriety as a blemished public figure of interest…not that I have an opinion or anything like that…I wouldn’t want you to think I have strong feelings about a topic like this, you know… Bleh.
I guess where I am going with this tirade is that I’m greatly bothered that the writer intentionally drew comparisons of Clinton’s actual and in my opinion, appropriate impeachment to theoretical impeachment “rumors” of Bush, due to his foreign policies and to Republicans wanting revenge for Clinton’s acquittal so they are aiming at Obama over the Blagojevich situation. According to Baker, it seems likely that Obama is being held to account for Clinton’s acquitted sins by the Republicans, not because he might actually be connected to Blagojevich, indirectly or directly.
I’m not sure if I made my point or not…

The other “bone of contention” is a bit briefer. On Sunday, while in Iraq, President Bush had to duck after an Iraqi reporter threw his shoes at the President, one at a time. The President was rather quick in dodging the shoes and the Secret Service pounced on the reporter within seconds of the attack. As I read the article, it seemed to be written with an air towards being understanding of the reporter who threw his shoes instead of condemning anyone who would throw anything at a president. The reporter’s employer has demanded the release of the reporter stating that he was utilizing his “freedom of expression” and that he should be allowed to do so. The writer could have shaded the article towards condemning attacking someone by throwing his shoes (which in fact, is one of the most severe Arabic expressions of hatred and loathing, to throw one’s shoe at another or something) or what damage was done to now trusting Arabic reporters in news conferences or anything of the sort, but instead, it read to me as if it was some how understandable and even culturally appropriate, considering the current state of Iraqi politics with the US. The first quote noted to be from an Iraqi citizen is “‘He [George Bush] deserves to be hit with 100, not just one or two shoes. Who wants him to come here?’ said a man in Baghdad. “At least the writer did include the following quote from another Iraqi citizen; "I think this incident is unnecessary, to be honest. That was a press conference, not a war. If someone wants to express his opinion he should do so in the proper manner, not this way."
In no way could this behavior be considered “appropriate” or “acceptable” or excusable. Apparently Human Rights organizations are trying to monitor this result very closely to make sure the reporter’s rights are not violated while in custody. In and of itself, that is not a bad thing, but to note it and highlight it in this article, alludes to the suggestion that it is probable that his rights will/are being violated and that the responsibility for those rights infringements will also be laid at the current President’s feet, as if it is his fault.
Okay, I think I’m done with my current frustrations on those two topics.

Now, as to life here and medical realities and such…It seems that I have been able to go for longer stretches of time without suffering attacks, during the winter months than during the summer months. I think I went nearly 17 days without an attack over the past few weeks, which is a true blessing, yet weird to write at the same time. Life should not be filled with muscular attacks of any kind, but if I’m going to have to contend with them, then I’d like them to be few and far between.
The last two attacks were opposites of each other; the first was a result of “running” down the stairs of my home and running outside through the garage to defend a neighbor from two pit/boxer dogs who were attacking her. The dogs had fled by the time I could get outside with my club so I followed down the street in the direction they fled, but to no avail. It was then, as I was walking back up towards the small group of neighbors who had gathered due to hearing the screaming of the woman being attacked, that I realized how cold it was out there and also how angry I was in the moment. I was furious that these two dogs were out of their yard, free to “pack up” against anyone they choose and that the apparently got away with it without receiving any discipline for their viciousness…it makes me angry just thinking about it. ANYWAY, after joining up with the collection of neighbors and beginning to talk amongst ourselves, I began to feel my lower back tighten up and begin to spasm. As I focused on what exactly was beginning to happen, my legs began to lock, which is the sign that I will soon lose my ability to remain upright. It was then that CC asked me if I was alright. I was able to shake my head “no” and she called to Missy (the kids had come outside, following CC who had chased after me, apparently) to help get me back inside before another issue was begun in the street. CC got me upstairs and into bed just as the attack hit fully and the rest of that story is more or less, just pain and not unusual. I couldn’t walk much the following day and remained in bed until the day after that when I began to be able to walk again.

The next attack was a paralytic attack last Friday evening. I was on the couch watching “Horton Hears a Who” with Missy and became aware at the end of the movie that I could not move from the position I had been laying in. When I tried to speak, my mouth seemed to move, I think, but my vocal chords didn’t. I was somewhat able to move my head in answers to CC’s questions but by far, the paralysis attacks come with more fear simply because I am completely conscious but unable to control my body. Both types of attacks bring resulting pain with them but the pains are of differing intensities, for the most part. I think the paralysis attacks result in more severe pain because they are purely being affected by the rapid, unexpected exchange of potassium in the muscles instead of the muscle workouts they get from the spasms themselves.

During the recovery process from an attack, people who know that I am recovering from them often ask how I’m feeling or how I’m doing, and the temptation is for me to be brutally honest and answer their questions directly, but I know that the majority of folks are primarily wanting to convey their awareness to my plight and that they care how I’m doing, rather than wanting to actually know how I am feeling in that moment and in general at the time of the question. I don’t see this as a negative in any way; I see this as my responsibility to correctly judge the nature of the question by the person and answer accordingly, so as to not find myself sharing more than expected or necessary, so to speak. I think, in general, that most folks wish to simply greet one another not engaging in conversation, but instead find themselves asking someone “How are you?” or “How are you doing?” or “Hey, you doin’ okay?” which invite the recipient to greet and express their current *condition* with the greeter, which may not have been what the greeter really wanted to know. I went through this a lot back when I was recovering from my back surgeries and while I was recovering from taking myself of prescribed pain meds. I was a very angry man during those years and I was pretty medicated in that time too, which had masked the physical and emotional pain of that time until I took myself off the meds which meant, not only was I now feeling the real physical pain from the back surgery (I had broken my back) but I was also unable to escape the emotional and cerebral pain anymore and I had to come to grips with both simultaneously. Not some of my better years of life, I must confess. I digressed into this because it was during that time that I would hold people responsible for the questions they would ask, advertently or inadvertently, so that when they asked how I was, I would ask them if they really wanted to know that or did they just want to be polite and say “Hi” and get on with their life. Now, I’m no where near that mindset (I do thank God for deliverance from that mindset), but I do find it necessary to internally determine, as best I can, the motives of the person asking so I don’t end up sharing more than they probably or actually want to know. That can be difficult at times and it is honest to say that it certainly was easier when I was angry with everyone, to simply call everyone on the carpet for the intent of their greetings rather than being responsible for my own perceptions. If I was to have an extending thought regarding this, I guess it would be to maybe keep that in mind when you greet someone and they don’t respond in the manner you might be expecting; perhaps there’s more going on inside them and the social discerning filter within their brain or heart may be clogged with pain and suffering or even just broken from one kind of abuse or another. Who knows? With all that being said, PLEASE know that I am not being critical of ANYONE asking how I am doing and I GREATLY appreciate everyone's concern. This was just a tangent thought that I felt like including and is in no way me trying to convey anything other than that thought.

So, “How are you, Wade?” I am doing alright and able to walk alright today. That’s the best qualification I can give at this point. I’m not stuck in bed nor am I needing someone to watch over me 24x7 right now, so I must be doing pretty well considering what all could be happening.

Okay, so let’s see…I’ve shared that we’ve learned HKPP and me seem to do better in the winter months than during the summer months. I’ve learned that if I am furious and I run down the stairs and it is cold/brisk outside, that I have triggered my own attack by combining stress, physical exertion and cold air with me. We are pretty certain that the deli sandwich I had while watching the movie with Missy was likely too high in sodium and thus triggered the paralysis attack, so, I have to be more diligent on my food choices. I’ve learned that lack of bodily rest and sleep creates a potentially volatile platform for HKPP attacks; in that something that would not ordinarily trigger an attack, might just be the key stimulating factor to kick in an attack if I am low on rest and/or sleep. I’ve learned that I can have a surgical procedure without it triggering an attack; something that we expected to be the opposite. CC said that the South Sac Kaiser OR team was excellent in the pre and care of me before, during and after the oral surgery on my teeth. Why not just go to the dentist’s office? Why choose to be “put under” to take care of fillings and crowns? In short, HKPP. The disease prevents my body from responding to the majority of dental anesthetics and throughout my life, from childhood through my 30’s, dentists simply believed that I was being over-reactive and dramatic to their dental work, unaware and unaccepting that the numbing medicines they were giving me, were not taking affect and thus the dental work they did, for the most part, I was able to feel, hear, smell and taste but was unable to escape. This created a loathing within me for dental work and made it very hard for me to follow up on, for obvious reasons. The use of nitrous oxide in combination with some of the numbing meds would temporarily work but would almost always have other side effects and typically trigger attacks after I got home (only we didn’t know I had HKPP back then, so the attacks were not affiliated with the dental visit, though the resulting extreme pain and exhaustion was). Once we learned that I am dealing with HKPP, most ALL dental factors and concerns were realized and questions answered. We learned that I need a certain kind of numbing med without epinephrine as well as another additive agent, but we also learned that I have gotten to the point that my stress level jumps when I enter a dental office and that the two previous dental visits to my previous dentist resulted in attacks in the dental chair, something that completely freaked out the dental staff and has resulted in their not wanting to…um…have me come back…? I’m not very welcome there anymore, which is fine, all things considered. We did connect with a dentist who has Kaiser OR privileges so that in one “visit” with him in the operating room, several fillings and several crowns can be addressed…and, yes, I had several fillings and several crown that needed addressing. A normal dental visit is between 45 minutes and 90 minutes, typically. My dentist spent nearly 6 hours with me while I was completely out and got a ton of stuff accomplished that would have taken several visits and likely resulted in several attacks and possibly even some ambulance rides and hospital stays, so, though stupid expensive, it was the only way we could do it. I’m likely to have to have a couple of root canals due to a couple of teeth being continually sensitive now, and that is not something I’m looking forward to, but we’ll see what our options are for that and see about getting it done soon; I hate only being able to chew in one small part of my mouth! Grrrr….

Let’s see…oh yeah, my laptop hard drive died without giving notice and took 70% of it’s belongings with it. That was infuriating to say the least. My cuz was able to retrieve about 30% of the drive, including most of My Documents and about 50% of My Pictures. Fortunately, I had all of my MP3s and Mpegs on my external drive so they were not at risk, but for reasons I cannot understand, I did not set up the scheduler for the back up drive, so I did not have a current back up to work from. Losing use of the computer for two weeks took me out of the loop technologically and resulted in further getting behind on here and not keeping very up to date on Facebook too. I’m doing well enough today to type (which is what I’ve been doing now downstairs for the past 3 hours…) but for the most part, I would use my dictation software to post my blog and such and I lost that installation with the crash as well as the verb usage parameters and custom dictionary and voice recognition settings that had been created and tweaked over the past several months making it easier and easier to use the software; now I get to begin again from the start, my own fault for not having set up the back up scheduler.
Yet another Grrrrrr.

Last night we went to FOPC’s Christmas program which included a really beautiful selection of musical works and arrangements, full choir with a few soloists as well as an orchestra under Dr. Chris Alford’s direction. Chris did a great job and the final product was worth waiting for. Naturally, Chris had Rob in the booth along with Greg, Robert, Scott and Leslie and maybe Chris Patterson too, though I don’t know for sure, though I did get to see her while. I cannot begin to express how blessed i was to, once again, be able to see my friends in the booth and my friends from the platform, especially. I miss each of them greatly and appreciate them all the more. Sara and Chris did incredible works last night and it will not be something I will forget, simply due to the blessing of the efforts involved, the circumstance and conditions as well.

Well, this brings us up to speed for the most part. I hope not to become so behind again.

Peace-

Friday, December 12, 2008

Paralisys attack a couple hours

Paralisys attack a couple hours ago. Hard muscle pain currently and issues walking.
Making it an early night now.
Grrrrrr

Sunday, December 07, 2008

Sorry...

It's now Sunday morning early and I am only writing a brief apology for having not posted in almost a week. The convenience of my laptop made it very doable to post easily, however with it currently disabled, I am struggling staying on line for the time.
The good news is I have been attack-free for over two weeks which is great and unusual, at the same time. Notable progress in PT as well, thanks solely to Mark and his care of and for me.

I'll do my best to write a legit post tomorrow or Monday, but that is the positive side of the past couple weeks, anyway. More to come...

Peace-

Monday, December 01, 2008

I had surgery last Tuesday

I had surgery last Tuesday and then came down with a virus which I'm still fighting. Laptop crashed this AM.
Frustrations

Thursday, November 27, 2008

Annie's Dreams...

Looking out the window, wondering if her dreams will come true...

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Wednesday, November 26, 2008

Annie snoozing

My furry couch potato...

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My Guitars in 2008

This is a shot of the North wall of my home office. My dad made 8 guitar wall hangers to spec and now I have a better opportunity to be inspired to play by simply seeing the instrument out and available. Also on the wall, to the left, is a concert shirt given to me by very good friends after I was unable to go to the show with them as well as one of my gigging denim vests with custom air brushing on it.
All are good memories which make me smile when I think of them.

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"I do have my fears,

"I do have my fears, but they do not have me." - Peter Gabriel

There's a lot within those few words

The surgery went well and

The surgery went well and I am back home. It lasted a little over 4 hours and had no complications.
Time now to recover.

Monday, November 24, 2008

Monday Night Different

Today is Monday, November 24, 2008.

Today turned out to be a very different full day. Missy and Joshua watched movies last night and went to sleep downstairs in the living room, while CC and I went to sleep upstairs in our bedroom. So the kids were up for awhile time and definitely later than CC and I were up. CC had to work this morning, so she got up at her usual time and was able to get off to work in plenty of time without waking the kids up, so that when I woke up, which was around seven o'clock, I walked out to the stairwell and noticed that the kids were still asleep. So, I worked a little bit on computer and then went downstairs to make a breakfast for myself. The morning of itself really has little to offer in the way of interest, with the exception that late morning around 10:45 to 10:50, while Missy and Joshua were upstairs in my bedroom watching a video, I was in my office and was typing and thinking, so the house was very quiet and I could hear everything around the house. Annie had been out of her crate and had already been outside and back inside by this time, so she was seated by the front window, at the front corner of the house, staring out the front window looking at the street, like she normally does, and resting there. It's at probably 10:55 or so, that I heard are sliding door open and in that instant, I thought that it was strange that CC would be home early and be coming in through the back door... and then I heard Annie bark in a very ferocious and vicious bark that I have only heard her use a couple of occasions. She barked and ran into the kitchen area sliding on the hardwood floor and then I heard her claws trying desperately to gain traction on the hardwood floor in order to chase the intruder back out of the house. I went from my office into Joshua's room and looked out his window quickly to see if I could see anything; I couldn't and then I went into our bedroom and out onto the balcony and I looked out onto the street to see if I could see anyone on the street, but I could not see anybody. So then I made my way downstairs and went outside for Annie was continually barking at our halfway fence, which separates the very front fenced boat section of the yard on the side of the house from the backyard. Both sets of Annie's hackles were up, and when she caught eye of me, she spun around, very much ready for business until she recognized that it was me. And instead of coming up and being all apologetic and submissive to me, she remained on guard, and she immediately ran to the other parts of the yard, smelling and sniffing. When she came back to where I was, I had opened the gate to allow me to walk beside the boat towards our cyclone gate and she followed with her nose on somebody's trail, that had hopped over the fence and then had gone out through the cyclone fence.

It felt almost surreal to accept and realize that someone had just come into our backyard and had opened our sliding glass door to come into our house, not seeming to care whether or not we were home. He DID seem to care quite a lot that there was a Doberman hound that wanted to meet him. I'm thankful nothing happened to her. I'm not so thankful that nothing happened to him, and do believe it would have been very appropriate for him to of had a rather painful going away gift courtesy of Annie. However, that was not the case. This brings to light, a number of different home habits that have to be changed in terms of being a better steward of the property, taking better care of ourselves and securing our possessions and our doors and windows even when we are home. And interestingly, when I heard the sliding glass door, my very first thought was of CC being home early and how that couldn't be correct. My very next thought and impulse was that I needed to grab my rifle and load it; I don't think I'll ever forget that feeling, or that impulse. My two young ones were up in my bedroom expecting and believing that they're perfectly safe in daddy's home. And some man of evil put their faith to question. May he and I never meet.

After all of this had taken place, I called the sheriff's department and asked for their direction; I wasn't sure that I should have called 911 at that point in time. So, not wanting to take a chance, I called their business line, and they sent out an officer (actually two officers) and it was the officers who suggested that in the future that I call 911 with anything remotely similar to something like this happening; message received.

So following that whole significant section of fun, my adrenaline had been pumping rather quickly and hard and within 40 minutes or so of that happening, the attack began slowly at first and then went into full scale. What makes the most sense to us is that the attack was triggered by the stress and the anxiousness of what was just taking place and had taken place. After the attack, I was down for a few hours and then after CC had come home, she let me know that we needed to head down to South Sacramento for a pre-op appointment, so, very slowly, I made my way down stairs and into the van for us to leave for the appointment. I forgot to mention that around 12:30 or so, my niece Kirsten came up to visit us and see the kids for the night, so it worked out perfectly for CC and I to go to this appointment and Kiersten was able to stay with the kiddos.
The long story short, from the pre-op appointment is that there was no pre-op appointment tonight. We drove most of the way there, only to be caught in traffic and recognize that we could not make it in time. And so CC was fielding phone calls on both cell phones from both, the dentist as well as Kaiser, talking about how this whole process was going to work out. Bottom line now is that I will go in early tomorrow morning to South Sac do the pre-op appointment, get all the information handled and then go into pre-op itself and get prepared for the surgery and then do the surgery tomorrow itself as well. My parents have driven up and are staying at my aunt and uncle's house and they will be here to help me and to help CC while we come to grips with getting through the oral surgery. Needless to say, there is a lot going on.

As a matter of fact, I'm recalling that yesterday was a good yet, busy day, in that we did not go to church, because CC had to work yesterday morning, but Joshua and I had some time together, while CC, after she got home from work, spent some one-on-one time with Missy watching a video together with her, joshy and I went and took Annie for a very long walk. It was not our usual walk, this time. We walked over in to the green belt area on the other side of our house and we took the pathway out to an adjoining street. A disconnected block over from where we live, and then we followed that street as it twisted and turned its way back around to Fair Oaks Blvd. and then we rode down Fair Oaks Blvd. back towards the park where we had originally started from. CC and Missy were waiting for us at the green belt, and they have brought tennis rackets, and tennis balls with them. So we crossed Fair Oaks Blvd., and we went over to the small tennis courts located at the front end of the park. We brought Annie in with us and we secured the gate so that Annie could run all around the tennis courts and be free from restraint, while the four of us could bat the ball's back and forth to each other. And I managed to do that whole time without sitting in my chair and without suffering any attacks. At that point in time, I knew it was going to be eventually painful, but I thought it would be worth it and I was right. When we got done playing around, we all went back to the house, and it was then, while CC and I were talking in the kitchen, that my head became very light and my balance simply went away. CC caught me before I fell and Missy came in and helped her hold me and then they got me into a chair and got the potassium into me and the other medicines into me. And once things mellow out I slept for a while. It was after that, that CC and I went upstairs, while the kids stayed downstairs. Going to sleep that night was not a problem.
Two attacks in two days; not what I'd want, but then again, no one's asking me either.

I'm running out of words, and I'm running out of the ability to think of them. It is time for my medicine and to go lay down.

It's pie time...

After a long and heavy day, it MUST be time for pie!

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Friday, November 21, 2008

Today was alright. Accomplished a

Today was alright. Accomplished a couple large tasks but am wiped out now.
Till tomorrow-

Wednesday, November 19, 2008

Tough attack yesterday. I'm down

Tough attack yesterday. I'm down for today. Least I had 8 days break which is a blessing in and of itself.
1dayatatime

Sunday, November 16, 2008

Sunday Night Brief...again

Sunday, November 15, 2008

Yesterday was the final soccer game(s) for both Missy and Joshua. My aunt and uncle went to Missy's game with me and CC took Joshy to his game and then came to the end of Missy's game. Both the kids' teams lost their games but not due to lack of effort, whatsoever and that was very encouraging. They both played very hard and competed well showing very good effort.

Health-wise, I began to feel *poorly* as lunch came to a close and was able to get to the car on my own (holding Missy's hand) and was able to get into the house and upstairs with CC's help. I fell right to sleep and was out for a little over 3 hours but did not feel impressively better after sleeping and then wasn't able to go to sleep until after 1:30 AM. Grrrr.

Woke up this morning several times, uncomfortable and in some pain as I tried to sleep. And when I did actually get up, around 8:15 AM, my sheets smelled like locker-room sweat and I knew I would have to change the sheets AGAIN, sometime today. It is absolutely maddening to have to contend with this disease, even in its less-than-severe moments. I change clothes twice a day, on average, due to potassium crashes (drops) and our bedding is changed far more often than we would prefer, which of course means that much more laundry for every day to be done.
Yeah, I know I'm whining, but it's my blog; I can whine if I want to...I just won't feel good about it later, but oh well.
*sigh*

Missy wasn't feeling so well and stayed home from church, as did Joshua who needed to put the time into his homework, so it was CC and I who went to church, but we left my chair home and I caned it for the morning. Service was...different this morning; it felt disjointed and plagued with distractions. I was able to take notes and hear some things, but I took a hit from a potassium loss and was submerged in sweat for a good 15 or so minutes while my mind felt dizzy and my skin felt like it was burning all over my chest, arms, head, neck, hands and stomach. Normally those episodes (which happen daily) last only a few minutes and I can be back up and around within 15 minutes or, but this one knocked me down and left me in discomfort and wondering if another *shoe* was going to drop. As it was, no other shoe dropped today, however I have had one more episode of the same severity of sweating and even, just now, I dealt with a *normal* hit and only had to slow down on my typing for a couple minutes while my system came back to*normal*?
I did not feel connected today, not to church, not to my ladies, but I did feel more so connected to Joshua and also to God, though even that came from my own reading this morning in the book of Genesis, not from being in church. Mostly, today was a lonely day. Bummer.

Missy had her soccer party tonight at Godfather's Pizza (where I ordered......a salad.) and she received some kind words from her coach and a trophy commemorating her achievements in this season as a part of The Orangevale Eagles. Indeed, I was proud of her. I tried to post a video of her receiving her trophy but I couldn't get my phone to send it because the file was too big. Rats.

I have not mastered my eating cravings and my body does not hide that fact. If I don't get to bed and go to sleep before 10 PM, I end up needing to get up and go eat something in order to get to sleep and unfortunately, that normally coincides with my taking my meds, which bring about a definitive side effect of craving sweets (the methadone) and then it is very difficult to make good choices. It is up to me to make them but it is so very hard to say "no" to what I crave.
We shall see what tomorrow holds for me and for us and I am hopeful for some much needed rest while I sleep tonight.
May tomorrow be better than today.
yeah. Peace.

Saturday, November 15, 2008

Saturday Morning Early & Brief

Saturday, November 15, 2008 (12:42 AM)

Life has remained pretty uneventful from the health angle, since last week on Saturday when I took a hit while at Joshua's soccer game. Prayer and hope for *today's* game is no events at all.

I got to have a little down time with my hunny for a short time today; that is always such a boost and blessing for me. Continually living with and dealing with all that we do does not tend to bring convenience into time together, especially down-time.

I feel like my brain is like mush right now and am not remembering what I wanted to archive, share or otherwise vent on...some would say that that is not a bad thing...*sigh*

Oh yeah, I have a new phone now which will allow me to post videos of longer than 15 seconds (30 seconds or unlimited) as well as a better camera, so, hopefully I will get to posting more photos either on here or on Facebook as well as posting some immediates via cell during the day. I've been a poor steward of this blog as of late and I need to do better on all sides.

As a reminder to myself, I need to:
* detail current issues with my left hand/left index finger
* talk about my current eating regime and goals and such
* share where and what I am reading in scripture at this point and what I have been learning and understanding.
That ought to do it.

Until next...

Tuesday, November 11, 2008

Strong Dog

Tuesday, November 11, 2008

Turns out, Annie is a tad bit stronger than I had given her credit for...yesterday evening, after returning back to our house from making one lap around the circle, our neighbor's dog, Shadow, was in their front yard, off leash and while Annie WAS on leash, she was wearing her shoulder harness, not the Gentle Leader which controls her head. The other dog postured and then made a false run towards her and then Annie charged back, only she was directly to my left and she manages to pull me over in the middle of the street. Once I went down Shadow came at her and they "quarreled" a little bit (no blood); I was still buckled into my chair and not going anywhere so I pulled in her leash and brought her up to me while the neighbor grabbed his dog and took her back into their yard. Missy was riding with me and Annie and was there to help me get unbuckled and stand, as well as my neighbor. The chair now has a few scratches on it but that's all. I hurt pretty good last night and wasn't sure if walking was going to be feasible today, however, after some extended sleep (I awoke at 3:30 and then again at 5:30, got up and had some cereal and then went back to bed), I was in decent shape, a little sore, but over all, decent shape. I'll not underestimate her again. That was a lot of weight for her to actually pull over; I was duly impressed.

Outside of that, things have been alright. We went and got replacement cell phones for CC and me and now are giving my old cell to Missy (she is THRILLED). Ryan at Wireless Toyz in Orangevale, did a great job of meeting our needs and configuring the costs and plans so that we ended up with the phones we wanted near the prices we were asking for. He's good goods, plus he remembered me from having been in there 2 years ago. He was interested in a customer, not a sale. Huge difference.

Well, that's it for now. Short and boring, I know, but that's better than long and medical, right?

Sunday, November 09, 2008

Sunday Night

Sunday, November 9, 2008

Another hit yesterday early afternoon at Joshy's 1:00 game in Folsom. We got to the car and got meds going before it manifested hard, so I was without paralysis and consolidated spasms, but I hurt pretty bad after resting it off and then this morning and today have been painfully challenging. It's just something I have to get through; nothing different from smaller/medium attacks of the past. I have to play ball with whatever is pitched and play as hard and best as I can. Some days I make it to the base and others I get hit with the pitch...gotta stand at the plate, though. Have to be ready to swing.

I'll have to write more later. That's the quick of it for now.

Wednesday, November 05, 2008

Wednesday Night From Here...

Wednesday, November 5, 2008


So, as it turns out, I did have a smaller hit yesterday evening while I was outside in the backyard cleaning our fountain (as best I could). I got myself to the house wall and leaned, locking my knees so I wouldn't fall then CC came and helped me inside. Smaller inconsistent spasms followed. Getting up this morning removed ANY doubt that I took a hit last night; I could hardly walk with the cane due to my legs and my ribs/ab and chest held me in contempt. I added one more to my pain pill allotment (per CC) and was able to manage the morning without having to stay down the whole time. Oh yes, I want to add that I believe that the key reason for having less attacks now is because of the climate change and the vastly cooler weather as opposed to the inescapable heat. As long as I don't get chilled or significantly cold, I expect that I will manage with minimal hits for a while. Wouldn't that be an answer to prayer?!! I'm good for that.

I wish I could be *normal* again. But it is unquestionably worthy of noting that through this disease, I have become even closer to my children, wife and family. I do believe I am blessed in spite of...*it*.

My thoughts on the political landmark? I believe that God is in control, ultimately, and that there were more voting folks who wanted Obama than wanted McCain. To me, it should be just simple math. I just began to write my more personal thoughts about it, and this, of all written venues, should be my place to write what I think and write what I want to, but I'm not willing to endanger my friendships over passionate politics. I voted; I "spoke my mind" via the ballot box and I think that should be that. I was really quite shocked to see the degree of hate and anger and venom displayed in Facebook over this election, certainly including the California elections, not just the presidential election; "Christians" calling other "Christians" misguided, diluted and even accusing them of following *another* Jesus. Scripture being quoted as a weapon against others, even generically and generally, spreading their angst and hurt around so that nobody walks away without feeling pushed. I'm grieved. A couple nights ago, I was even told (via internet) that I DO NOT have a right to my own opinion without chastisement and correction for my ignorance of my beliefs...and this too came from someone identifying themselves with Christianity. She ended her verbal sortie with "Matthew 25!". I was not surprised to read Matthew 25 and realize that she must have been referring to some friend of hers named Matthew who must have just turned 25, because NOTHING she was slashing with came even near relating to ANY scripture (although I did feel there was some relating her diatribe to "...wailing and gnashing of teeth."). Sad.

I wrote the following in an exchange with a very dear friend who sees things differently than me and was commenting on my salutation that I am hopeful that our new president will follow God. He shared ""W" claimed that's what HE was doing and look where THAT got us... Sorry! Love ya.". He also stated and I am paraphrasing) that Clinton was a far better leader and president that either of the Bush presidents. Here are, and were, my thoughts on those views:

"Following God carries no assurance of (no) missteps or a even, easy road. I think following God actually requires one to make decisions and choices that may contradict "political correctness" and even the people's desires, thus, in the shorter term, making one a popular outcast, but is there a price to big to be guilty of following God?
It is painfully tempting to draw attention to Clinton's clear and obvious sins and to re-illuminate his lies and double standards, as it would be to do the same with ANY president from a differing political party line, but sin is a given in people, whether they occupy the throne in a political office or the thrown in their bathroom; they will sin and fall short in front of all of us. My earnest hope is that, when they fall short, they do so DOING THEIR VERY BEST in following the leadership of the God that they profess leads them, if that makes sense.
I also hope you are willing to point that same finger at Obama when he screws up, gets caught lying & falls short of his political promises. Every president falls short, it is a given in the office of president. I believe that promises, postures and "appearance" are some of the main reasons that Obama was elected, two of the three I agree with, but he will now learn "on the job" what it takes to be a president and I can only hope that his skin, regardless of its pigment, is prepared and tough enough to endure the cuts of international opposition and the scrapes and bruises of national "no-win" choices he will have to make and we will have to live with.
Do you suppose that people will be able to mock him and mock his errors and mistakes, as has been done to Bush, Clinton (occasionally) and Reagan (in general) without being called racists or bigots or haters? Unfortunately, I doubt it at this point. I don't agree with or appreciate the mocking, regardless of WHO is in office, but I know it will be done, to one extent or another, only now it may likely be received as a racial "thing" instead of a political one. I guess it will depend on the person.
I'm excited to have a president whose skin isn't white, just as I would have been excited to have a woman vice president (thus creating the possibility of having a woman president). I'm NOT the least bit concerned for their skin color or their gender; I'm concerned for their role as president and what impact they will have on America. More than anything else, I am concerned for their espoused relationship with their living God, who they profess relationship with.
At least "W" did his noted best to follow God; it remains to be seen if Barack (Barry) Obama will do the same.
I expect that we will end up agreeing to disagree on Clinton's success as president. As to his personal life, I think, and am of the opinion, that once he became the president, he chose to live his life in the public's eye with all aspects of it available for public opinion and approval/disapproval, to a great extent. The issue of his adultery while in office was far more concerning because he lied about it and it was his lack of honesty, not his act of adultery that caused so much alarm in me. If he is willing to lie and conceal such an act as that, what else has he lied about and what else has he concealed?
I realize that you may likely not see Clinton as the failure and embarrassment to the office of president as I do, and that's totally cool because Clinton has, and had, nothing to do with my love for you as my friend of so many years. I could give a rat's ass about politics when it comes to caring for and about my friend. My response to political banter is just my response.
:-o)

I guess that sums me up pretty well regarding the presidential politics, at this point

I was hoping that today would be less anxious than the preceding number of weeks, but even today, more posturing and finger pointing regarding an proposition that was passed by the majority of California voters and now seen as the fault of "ill informed, unauthentic/untrue Christians and making the *real* Christians look bad, besmirching Jesus' name. I don't know about everyone else, but I voted my heart and my spirit, according to my knowledge of the scriptures. With great regret but historical proof, the Word of God, the Bible, is not "politically correct" and brings controversy to EVERY community and people who live irregardless to God's own teachings. God is love and we are to love EVERYONE regardless of their sin or their politics (some may even see those as one and the same...) but God does call His people to live in the world but not embrace its gods, customs or traditions if they contradict His Word.

I love my family and my friends IRREGARDLESS of their politics.
I read the end of the book...I know how all of this ends, eventually, and I know with all my heart, where I believe I will be; that should be good enough for me.

Friday, October 31, 2008

Early & Honest

Friday Morning, October 31, 2008

It's been shamefully long since my last legit posting, and thankfully, it is not because of regular attacks, but because of accomplishment-filled days and evenings, wherein I don't sit down to write out my thoughts and recent history, but to socialize on Facebook and connect with others in a limited, small cybercafe, if you will, where folks "come by" and stay for a *chat* or two then leave to get on with their day. It is often my only real connection with folks, other than my family.

My last attack was Wednesday night, beginning while we were eating at Fresh Choice. Actually, I began to suffer confusion (and realize it) shortly before CC picked me up to take us all to Fresh Choice for dinner. I felt like I was getting slower and slower but didn't want to cut the kids dinner time short, so I would let CC know when different things would begin to happen or I would realize them and we went from there. Eventually, CC walked me to the car and I rested in there until she and the kids came out to leave. After we got back home, CC helped me upstairs and got me to bed and my meds in me as well. About that time things went South a bit faster. I woke up the next morning (yesterday) feeling VERY sore and very slow. I made it to PT but after that outing, I went to bed and stayed there for the rest of the day/evening. I did come down and have a little dinner with CC and the kids while we watch political ads interspersed with brief moments of "news" and we talked a bit to the kids about the political advertisements and what they are created for and such. Shortly thereafter, I went back upstairs to bed. I have done a little bit of FB today, but for the most part, have been lying down, feeling like I was beat up again.

The rain is here and I'm very happy! It was suggested that the change in the weather may be the key factor in my reduction of daily attacks...and I think they are correct. Since the heat dropped down below 85 degrees and now regularly stays in the 70's, or so, my attacks have been far from daily; Praise God.
I have been still suffering from exhaustion and heavy drowsiness during my mornings, afternoon and evenings. It seems that no part of the day is exempt from this overwhelming urge to just drop my head/or lean my head back on a headrest and just close my eyes "for just a few minutes"...or an hour or so...this one I have little clues for. I know that I don't sleep regularly so it is quite possible that my lack of nighttime sleep may be encroaching on my daylight hours, but no one's able to offer me any substantive medical suggestions, other than I'm battling depression...uh...yep. Memory issues have not gotten better. Still trying to lose some weight. Nothing's really changed on my personal medical side/front.

This past Saturday, after Joshy's soccer game, my dad took me (at my request) to the Cordova Gun Range off of Sunrise and Douglas in Rancho Cordova. I shot about 150 .22 rounds and probably 20 or so shells with my 16 gauge shotgun. Dad didn't shoot due to his shoulder hurting him, but we had a blast together while I shot and he spotted for me. When we went over to the shotgun range, he sat out near me and pushed the button to fire off the bright orange clay discs (also called clay pigeons) for me to shoot at. I hit 2 out of 12 or so, which I was THRILLED with, being that I hadn't really shot my shotgun since last hunting with my dad when I was around 14 years old...that would be 31 years ago...the last time he and I went duck hunting together (the last time I went hunting, period, really). Saturday was a very special time for me; very special time. It costs around $15.00 to go and shoot for as long as you want to, so I'm hoping to stock up on ammo and then become a regular to the range, so I can get back into something I really enjoy doing. I love shooting.


God has blessed me with the desire to create, record and play some music again and even pursue some vocal work as well. This is totally out of the blue for me and I know it is surely a God thing, for I am empty without Him. My current effort is called "Tunnels" which you can here by clicking on this:


http://www.youtube.com/watch?v=HcWTXtmzulc


At this point, the words are obscured by the vocal effect, however, I kinda like the over-all package sound, though I may still add some more discernible vocals to it, plus it needs a chorus (vocally) so I need to do some more work to it. I play everything on it except for the drum-loop I found via Loopology. I'm open to opinions and encouragement, if you are intrigued to check the some out. The only real bummer is that through Youtube the music is incredibly compressed and most of the fidelity and low-end is greatly compromised. *sigh*

My effort before getting into bed tonight was to pick out a drum beat and guitar sound for a song I wrote 16 years ago called "Goodbye to Graceland". I'm not sure why that song is now up for revision, but I'm planning on following where I am lead.

Closing, there is something I believe I am to share, specifically; Read 1 Samuel 8:7-20 (I'm pretty sure I have that correct). My heart and spirit have been grieved and greatly troubled over this election with all of the name calling, bitterness and faultfinding, and not just that between the political parties, but between friends, families and colleagues. It just grieves me. Some time ago, God brought the book of Jude and then 1 Samuel into my head to read, so I read them (I'm now into 1 Kings) and I cannot convey strongly enough that I am in great fear that God may just pull His hand of protection from over us (as a nation that used to be "under God" but has pushed itself off of His path so far). He may have seen to raise up a "leader" who "the people" are wanting to lead them, all the while as they continue to reject God's leadership and His commands. Throughout history, God has risen up leaders to overthrow His chosen people because of their lack of moral and Godly obedience and their contempt for His laws. In the Bible, it is referred to as "judgment". I'm scared that we have pushed God to this point. If we elect a leader that stands against most, if not all, of the biblical principles and moral values which are continually being stripped away from our nation's foundations, then we will have no one, NO ONE to call or cry out to when we suffer the reaping of that which we sowed. In that portion of 1 Samuel, God says that He"...will not listen to them in that time".

Pray that I'm wrong. Pray that this will not come to pass, but above all and most importantly, pray that God will seat the president HE wants over America; any other candidate will bring sorrow, suffering and judgment.


I'm tired now. It's 1:30 am...AGAIN!

Thursday, October 30, 2008

Another attack began last night

Another attack began last night while at Fresh Choice for dinner. Got home prior to full scale hit. "Under the rock" today.

Monday, October 20, 2008

Monday Night Brief

Monday, October 20, 2008

Another short entry. My last attack was Thursday night and it took me 3 days to recover to the point where I could walk "normally" with a cane. Funny how I forget how it feels to have an attack after going a number of days without one, but then remember all too clearly in the moment it hits. Tomorrow is PT and I'm looking forward to it. I'm BEYOND frustrated with my body size and have got to come up with a simple, effective plan to drop some of this weight. I have NO desire to see a mirror, anywhere. I'm planning on eating far less carbs than I have been and continuing to stay very, very low on the sodium. I still have daily full body sweats that necessitate changing my clothes afterwards, but, aside from understanding that the sweating is an outward indication of my body's inward dump of potassium, I have no other clues, and neither do the Kaiser staff. it wasn't even a doctor or endocrinologist or nephrologist who alerted me to it being a potassium dump; it was a visiting nurse who's speciality happen to be HKPP, an absolute answer to my prayers for help. God provided answers through her, thankfully. Anyway, we'll see how my change in diet will, again, affect me.

I'm through 1 Samuel and now am part way in to 2 Samuel. It never ceases to amaze me how relevant scripture is to today and my life in specific. Just mind-blowing. I feel enriched from my reading and I also feel empowered to vote my perspective, having been encouraged by God's word to me. I must say that I am greatly troubled by this election and am very concerned that no matter WHO is elected, that it's only going to get worse and then, once again, everyone will blame whoever is holding the reigns, regardless of who was in office when the problems actually started. I don't know why this particular election grieves me as much as it does, except that I have been more immersed in scripture in the last number of weeks and some fundamental issues are on the table politically, as well as future judges who will "steer" the laws in whatever direction their politics or pocketbooks direct, and those issues and concerns cry out to me. I will vote.

I have to figure out how to be on my oxygen more during the days; I have slacked on that and I believe that is a significant reason for my tiredness and exhaustion. I have very long tubing, so perhaps I will simply have to get used to trailing a tube around with me and "get over it", so one might say. I don't want to be sick. I don't want this disease. I don't want to get worse. I don't want to be on oxygen. Things that remind me of my brokenness are things I don't want to see or look at, I realize that, but, "Oh well...Get over it." Yeah, yeah...I know, I know. I guess it will just continue to take time.

Okay. Time for some TV then sleep.
Back pain, shoulder pain, eye pain, jaw pain and abdomen pain are the ingredients of tonight's bedtime...

Friday, October 17, 2008

Prop 8 Video

Here is a video explaining Prop 8: http://www.youtube.com/watch?v=vI-GjWY-WlA

I'm sharing it because it was shared with me and I have found it helpful.

Friday Late Morning

Friday, October 16, 2008

Thursday morning, around 4:45 AM, I took a hit of chills, or better said, my upper body became cold to the point that I went into muscle spasms that wracked my whole body for 15 minutes or so, I'm not sure. It destroyed me. When I managed to get out of bed, around 8:00 AM, I could barely walk without assistance. By 9:00, I was reasonably mobile and waiting my my bud Josh to come and pick me up and take me to my PT appt. that morning at 9:30. He came right on time and away we went to PT where I was very tender and sore, though Mark noted that my muscles were doing pretty well, considering what had happened 4+ hours previous.
After leaving, we went to Walgreens to buy another cane for me; my existing cane was falling apart so it was time for another one and to allow Joshy to use my old one as another rifle/machine gun for him...you know how it goes....

The day passed with me being tender and sore but manageable. I resolved myself to take Annie for a walk around the circle and I was able to do that while riding in the chair. As a matter of fact, ANYTIME I note that I "took Annie for a walk..." or mention something to that effect, simply know that it means that I rode in my motorized chair while holding onto her leash, in some manner or fashion or one of the kids, parents or friends went with me and may have walked her on foot.
So be it.

Anyway, we came back from our walk in decent shape and I rested thereafter, upstairs on my bed.
I ended up taking a deep nap during that time and when CC woke me up around 6 pm, I thought it was the next morning...took me a while to get my head back around.
I got myself back up, changed my sweat pants and shirt becasue they'd gotten soaked from my sweats during my sleep (this happeneds every single time I sleep;nap or bedtime) and then went downstairs. I went with CC to p/u Annie from the groomers and to help hold Annie while they finished trimming her nails; it's an Alpha Dog thing...we bought a mesh muzzle for her and then we came home. I walked into the back yard for a moment and then realized that "it" was starting again...it had been two weeks exactly that I had gone without a full-blown attack, but I stood there frozen, realizing that one was hitting and I could hardly do anything at all. That moment, that feeling, is one of the most terrifying feelings I experience and have experienced. Utter helplessness and defeat.
I managed to turn myself to face the patio doorway and reached my hand to hold onto the glass door and said something like " I need help" and in nanoseconds, my legs began to crumble, knees buckled and my eyes rolled back in my head. CC caught me from one side and Missy appeared on the other before I went down any further. I remember seeing them coming towards me and then watching the cieling to the sky then darkness. The got me to the Lazyboy and I don't remember much from there. I remember getting myslef out of the chair around bedtime and getting mysleft to the stairs, but just then Missy appeared under my left arm and walked me up the stairs and into my bed. She's so strong. I'm 250 lbs+. I don't remember after that. I woke up this morning when CC woke me around 7:00. My body feels as though I've been kicked repeatedly in the ribs and upper torso and like someone has punched and beaten my arms and legs over and over and over agin through the night. My eyes hurt alot and it is very difficult to read and type becasue moving my eyes while reading causes pain, but not dry eye pain or something like that; it's a pain behind my eyes. Hard to describe except that I feel that I can see, in my mind's eye, that the pain is coming from the muscles that hold my eyes in place and control them looking left, right, up and down, etc. and those muscles occassionally spasm and even cramp, causing great painful disruption to my moment in life right then. Sometime my eyes just sponteneously shake from left to right as if I was "shaking" my eyes in some kind of spasming motion like I did when I was a kid. I could make my eyes do that when I wanted to, but not until this year, hasthat same thing begun to happen with my eyes WITHOUT my permission and intention. All I can do is close my eyes and wait for it all to stop. It hurts the same, whether my eyes are open or closed

I've also found that sometimes,.when my eyes are closed, it seems as if someone is turning the room lights on and off in rapid succession for 5 to 10 seconds at a time and thenspasms come and go.
Anyway, this morning is VERY slow and methodical so I can get through it. Even now I take breaks from typing to sit and hang my head, eyes closed, so my mind and my eyes can rest and regain focus. This has become common now, a daily scenario.
My jaw and mouth have become so sore that I am more distracted by the moments they don't hurt than from when they do. I know I lock my jaw when the attacks hit and I'm totally certain that it gets locked while I sleep too.

(Rant forthcoming...) I'm just feeling screwed over by my own flesh that is supposed to support me and contain me until I die of old age...it instead, betrays me on a daily basis, subjecting me to impressive amounts of variable pain in a variety of locations, often lasting months at a time, yet when I have to go in to the ER to seek pain management and bodily restoration and re-balance due to a formidable attack, I am assumed to be, accused of being and treated as though I am a drug chaser and pain-poser who simply likes the attention of the ER staff. Understand NOW why CC treats me at home during attacks that would otherwise be considered 911 events? The hospital leads by bias and jaded experience that they call knowldege and wisdom, but we call assumption and narrow-sightedness. I do believe that they can save my life, but I do not believe that they can care for me or respect me or my wife, as long as they operate from behind their guarded ignorance and place the value of the dollar above the value of the care of the patient.

Time to eat something I can keep down and then lay down until I can walk better. I'm not supposed to take any risks when I am home alone, and I am to keep my cell phone with me at all times, just in case.
Welcome to my life right now.

Tuesday, October 14, 2008

Tuesday Evening Short

Tuesday, October 14, 2008

My good and dear friend Dan Burke came up to visit me (us) yesterday (Monday) morning and stayed until late this morning, when he headed back to the Bay Area. I cannot begin to express the joy and blessing he brought to me by his visit. We love him dearly and had a great time visiting. The only downside is that my body was unhappy with my consistent attention to him and not remaining in a state of better restfulness. There is a price to be paid, but I'm TOTALLY good to pay it. He really blessed me.

God bless you, Dan-O. Thank you.

During our visit yesterday afternoon, my body began to fade out on me and I had to nap, so we took a break from talking and I went to sleep there in the chair while he began to watch some football. I woke up a few hours later to see him asleep as well on the couch, game still on and going. I was glad he was able to sleep as well. While I was resting, falling asleep, I felt the spasms start and dealt with a number of myoclonic hits/jerks but nothing manifested from there. I felt beaten after napping and the same this morning as well, so I know I had a "muted" attack of some kind because of how I felt then and even now. Still paying.

CC made dinner for us and the kids and we all ate dinner together; something that doesn't happen as often as we want, more often due to me not feeling well enough to sit at a table to eat. Many dinners are dinners in bed simply due to how life is right now. Tonight was a treat in and of itself, being able to fellowship with each other over good food.

I'm staying on O2 more often now to give me the best shot at a "good day", so to speak. It helps. I sleep with a CPAP and also O2 which helps me get a deeper sleep. It is not unusual for me to not move while asleep, when using the CPAP and O2 which means good sleep but very sore muscles as well. Another Catch 22. Yip-yo.

Neurology appt. next week to look into memory issues which still plague me daily. We'll see what come from that.


Monday, October 13, 2008

Monday So Far

Monday, October 13, 2008

The fatigue that I am experiencing right now is impressively interruptive, prohibitive and maddening. As I will be writing e-mails or in a chat with someone, I find myself having to drop my head while I'm sitting in my chair and wait to be able to raise my head again and open my eyes and type. It is not narcolepsy or something of that sort, because I do not fall into a sleep, so to speak; I simply become very tired in that moment in time, and it's like my body shuts down right then and there, though I can still hear what's going on around me.


When I went to bed last night, I did not put on my CPAP machine or turn on my oxygen compressor, because I was dealing with a fair amount of congestion and I couldn't breathe through my nose (which is a requirement for a CPAP machine). I was laying in bed waiting to be able to breathe through my nose and subsequently fell off to sleep. It could very well be that what I am dealing with now, is a lack of deeper sleep that I theoretically get when I'm using my CPAP and oxygen machines. I guess, actually, it could be tons of things; some things I'm familiar with and some things I have no clue of, but at this point, it almost doesn't matter what it is because it just is. I know firsthand how critical it is to be able to get good solid sleep. And I covet those nights when that actually happens, but I fear that more often than not, I do not get the amount of sleep my body needs, and/or I don't get the depth of sleep that I need on a regular basis. I'm also fairly certain that everything of dealing with, in regards to my eyes and sleeping and such, is completely related to HKPP and my ongoing struggle with it. I think that the average person can bounce back from periods of lack of sleep or periods of little sleep, without to significant of a price to pay, however my scenario, unfortunately, is more delicate, as it relates to my body's condition, immune system and constitution. It has not always been this way, certainly not to this extent, but things are very different now from before and I strive not to focus on the differences between then and now, as well as not focusing on what life was like back then, so to speak. My focus needs to be in the here and now and on my health, well-being, wife, children, family and future. I guess that's my way of reminding myself.

Wow. I can't begin to note all the different points during this entry that I have stopped, hung my head and shut my eyes. I'm also noting that when this happens, thoughts and images flashed through my mind almost and hyperspeed as if they're just passing by. It's difficult for me to focus and to stay focused on what it is that I'm trying to write and convey. I have to stop and then reread the previous few sentences to make certain that what I'm writing now is cohesive to what I wrote. I guess it should also be said that I'm not actually typing right now, but I have my earpiece on, and I'm dictating with my eyes closed and letting the computer write. If I were actually typing, it probably would not be a problem of being unfocused. I'm so tired. I know I should nap, but at the same time, I feel responsible to get different chores done and take care of different responsibilities about the house. It's like a catch 22, were I can't really win no matter which direction I choose.


I guess that's it for right now.
Peace.

Sunday, October 12, 2008

Attack-less Sunday Night Late

Sunday, October 12, 2008...

Well, it's late again and, though I need to get to bed, it's worth noting that I've made it through the weekend without an attack, which in turn means that my last attack was a week ago last Thursday; I think I'm on day 10. Having noted that, it is also relevant to include that I have been battling a variety of newer issues including: harsh muscle pain behind the eyes, spasms in the eyes themselves as well as spasms in the eye lids, neck and jaw locking as well as muscle cramping in my neck, in my calves, my feet and toes. These "attacks" are not as long lasting per se as the full body hits are, but they take me down when they strike just the same. Those hits have been daily for a month or so now.

Joshy won his soccer game yesterday but I did not go to it due to the chill factor and my body's disdain for cooperating with me.
The very last thing I want is for something to happen with me while at one of their soccer games. I was very proud of him though, and he knows it.

We made it to church this morning at Sunrise Community, which was very cool to accomplish. I think the kids might be easing up on their holding out for us to go back to Capitol Christian. We really, really like Capitol Christian, but the church is simply too far away for us to effectively connect on any kind of weekly basis. Church this morning was taught by the Senior Pastor and I appreciated his approach to teaching this morning; he taught from the scriptures and kept the message historical as well as biblical instead of preaching a lesson or thought. It really worked for me. We'll see what next week holds for us. When we left, Joshy wanted to be with me and I told CC that I wanted to just ride my chair home and meet them there instead of load it back onto the van and ride back that way. Joshy said he wanted to go with me too, so he and I left together and eventually met the ladies back at the house. Very cool thing was that I had Joshy sit on my lap with me and I leaned the chair back a little bit and he kicked back like that all the way home; probably a mile and a half ride. I loved the intimate time with him while just rolling along together. there will come a day when he won't want that time with me or will be too big for me to hold on the chair, so I need to get all I can in now...

Having read quite in depth in Jude and using the concordance to dig deeper, I'm now reading in First Samuel each morning as well as late at night when I eat my snack before going to bed. My spiritual resolve is strengthening daily and I'm no longer hypocritical in asking my children to read their bibles.

CC began feeling punk a little while after church today, so if you wouldn't mind to, please be praying for her to be healed from whatever is bringing her illness and that God would restore her to strong health.


Lastly, a couple notes from 1 Samuel:

In the NIV, it notes that two believing and saved parents does not guarantee God-fearing, saved children as well as that an office of spiritual leadership does not guarantee a legit spiritual leader.

In This Body: Living with HKPP through Faith and Love of family & community with Wade Odum This was recorded on March 19, 2024 On today&...