Title to be determined later

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

 

Peace-

-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!!

Regina getting married-

We have an opportunity...

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…

  

  

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?

 

 

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-

 

w

 

 

Day 5…

…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…

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!

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

Well, It’s Been a While…

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-