Wednesday, May 09, 2007

Wednesday, May 09, 2007

I’m not sure where to begin now that I’ve let so many days pass (again) since I wrote anything substantive. Hhhmmm…I guess I’ll go from topic to topic and see how chronological I can be…
Last weekend, we drove down to the Bay Area and stayed at my parents Saturday night and then came back late Sunday night and Sunday was Joshy’s birthday.

When we got down there (CC’s mom went to her brother’s place in Shingle Springs and Annie went with us), we went to my parent’s place and set up camp pretty quickly and then the four of us walked down to my sister’s place, about a mile and a half away. I figured it was my cardio work for the weekend (and I was correct). My niece and nephew are in a Bay Area choir called Lumina, a predominantly high school choir which is Christian based that sings around the area and tours each summer. I toured with them in 2003 as their sound engineer and recording engineer and truly enjoyed myself. My family got to go with me (which was part of the deal of my going with them) and we all had a good time, learning each step of the way. Anyway, Lumina had a gig Saturday night and the same gig on Sunday night, so we attended the Saturday night gig and enjoyed their work (as we always do) even with my niece singing a solo (she has my sister’s pipes, no doubt) and my nephew was singing away in the men’s section. I was (am) one proud uncle. Aside from the gig that night, we got to spend some quality time with my sister’s family and my parents. My youngest nephew bought a electric mini-chopper that he invited Joshy to ride, which Joshy fell hook, line and sinker for. It will kick up to “speed” and Joshy had a great time on it; a VERY neat birthday moment for him on Saturday evening.
Sunday morning we went to service at my family’s church, trinity Presbyterian Church in San Carlos, the church I am still officially a member of and consider my church family to this day. They’ve stood beside me throughout my life.
After church, we had lunch at Red Robin and Joshy and my dad had Happy Birthday “sung” to them by the Red Robin staff and each got an ice cream Sunday. After lunch, we packed up, drove to Big Five and bought Joshy his birthday present (Heeley’s; tennis shoes with removable rollers in the heels) then headed to Safeway to stock up for the ride back only to realize that CC’s wallet wasn’t in her purse, where it had been when she bought the Heeley’s at Big 5. Panic quickly set in and we searched the car to no avail then I called Big 5 and upon saying my name, they quickly said that they had my wife’s wallet and were holding it ion the safe.
We headed back there, thinking the worst thoughts and wondering how much was already stolen and such. We got there to find that it had been left at the counter and nothing was missing.
God blessed us. Simple as that.
We left Redwood City and went to SFO off of 19th Ave and went to the ocean for a couple hours of children’s complete joy and dowsing in a dust-fine black sand that took me an hour to rinse out of the wet clothes the next day. After a couple hours on the beach, we were blessed to have dinner with Art Yeap, my friend and mentor of sound. His wife and son were suffering from illness so we missed out on seeing them too, but we really enjoyed our time with him over Noriega Teriyaki. After dinner with him, we left for Sac and got home around 11:00 or so and then CC had to get up at 4:00 AM for work.
Brutal, but she made it. We are seriously low on sleep.

I’m listening to my recordings from when I was at MPPC. I made 3 main recorded collections of worship songs and packages straight from service CDs. It’s probably the most substantive collection of recorded work that I’ve ever done and I’ve always amazed at what God did during my time there at MPPC; the song selections, the blends, the participants and what (for me) is purely inspired works caught in the moment and I happen to be the one on the board for 98% of the selections. The recordings set a bar for me that I never reached in the following years (for a variety of logical reasons, though “technical” reasons would not be applicable given the incredible gear God gifted FOPC with in 2004, not the least of which is the SSL C100 console) and it may be that my opportunities to pursue that bar may be concluded now or simply more difficult to reach; I don’t know. I DO know that while I was there (at MPPC), I worked the hardest I’ve ever worked on creating a live and recorded blend and stereo recorded imagery for the listener to experience the hard and gifted work being offered and created on the platform. I was allowed to mix for some of the Bay Area’s most talented and Nationally unrecognized talent that God assembled under one worshiping roof; Menlo park Presbyterian Church.
As was often shared with visiting worship directors, teams, pastors and technical crews; what God chose to produce at MPPC was done through His choice of collaboration and creative weaving of technical crews, musicians, vocalists, and two of God’s most rich arrangers/composers in Debbie Schaeffer and Brian Mann who in league with the master producer Doug Lawrence, produced a service that many wanted but no one to imitate because it was the sum of the parts in His anointing, grace and blessing and NOT in the formula. People left with formulas and inspiration, which is all that we could ever give them; they could not leave with the worship produced because, well, because what was done, was done once and done for Him, an audience of One through the hard work of many called to the work. Perhaps that is a key; those involved were called to the gig that they performed as a part of the bigger picture.
I was writing a reply this afternoon, to a good, good friend from my MPPC days; Joe Sinnott was my lighting engineer for my whole tenure there. Not only was he my lighting (the lighting) engineer, but he was the only volunteer on my team of that entire time. He had no theatrical lighting experience when he volunteered, but he had a heart for worship, a desire to be involved and a talent to learn and produce. What I did and tried heard to do through sound, he did through the lighting system; from the system’s archaic times early on, through the times when moving-head lights were incorporated and became a flexible (technically annoying) contribution which required far more of his time each week to come in and program them for Saturday’s and Sunday’s services. In my reply to him, I realized a few things, which come now in the foreshadowing of a monumental transition to come at MPPC in Doug Lawrence’s retirement this summer. It will be the “official” end of an era that I STRONGLY believe God unquestionably used, and often used far more richly, than most of us probable were ever aware of. Doug’s withdrawal from the leading creative edge of MPPC’s worship product is even more poignant with in terms of the shape of MPPC’s worship service constructions Since my departure, I know that subtle, and some overt changes have been made there due to the arrival of John Ortberg a forecast new leader for the church in Menlo Park, a teaching leader of national renown and caliber, distinctly different from the established days of now retired former senior pastor Walt Gerber and particular following structured leaders from his mold. With Ortberg comes a complete change in methodology, perspective and approach. Stepping back, even just a few feet from the global transitions within the church leadership there since my departure, gives one the easy opportunity to see the probable potential for this impending resulting change.
Wow, did I digress from my initial subject of the compilation CDs I made before leaving. It’s a healthy digression, but a definitive one nonetheless. Before leaving, I collected some of my favorite moments in worship and put them into three CDs; Team Worship, Solos 1 and Solos 2. In addition to those, I also made a compilation CD for one of MPPC’s most soulful and talented soloists; Avis Blair, and also for Soloist and good friend Heidi Fisher and vocalist Brent James. Add to that a CD of postludes by Brian Mann (organist/arranger) and Kent Reed, percussionist. I spent many late nights and very early mornings at work, on my own time, crafting these compilations with a drive that I just couldn’t understand but had to follow. Ultimately, it definitely turned out to be a real blessing in disguise, especially the three main CDs; I had no clue at the time that they would be a collected record of a soon to be gone Worship experience at MPPC. Now, during my times of tense, dark struggles from day to day, afternoon to afternoon, they’ve nourished and even encouraged me when I intentionally listened to them. He must have known what they would mean to me now, then so far in the future; an unimaginable future I couldn’t foresee.
A number of folks have listened to these recordings and remarked how well we captured the “sound” of the worship service and nearly did not believe that they are nothing more than straight-forward rips from the actual service CDs without any re-mixing or overdubbing or substantive postproduction. I did tweak the bandwidth for duplicating purposes, but as for what you hear when you listen to them; the mix was the mix during that particular service, the blend was the blend, the house was the house and the feedback (at different unfortunate points) was the feedback in the live house that inevitably finds its place in the recorded legacy that is now my recorded legacy from MPPC on Teams and Solos 1 & 2. The only other engineer who has a couple tunes recorded on the CDs is Brian “Zadamnezar” Kunz. He was my right-hand man and number one engineer who blends beautifully with a musician’s ear (he’s a superb drummer/percussionist) and he is loyal, long time good friend. My crew from my days there are still my friends and they have each helped me at one point or another to continue to look forward, whether it be though a simple phone conversation of friendship or from an email of connection.
TO close out my thoughts on the whole MPPC “thing”, I’m willing to concede that, perhaps, I live in the “past” to some extent when it comes to enjoying a worship “moment” crafted with intent and love, desiring that God be pleased (as well as Doug…) with the end result, but I cannot help but feel and fear that Doug’s type of attention to detail, structure and flow will retire with him and will ultimately affect how worship is approached for other churches, local and distant.
Am I giving too much credit?
Prove me wrong and I’ll stand corrected.

I pushed my limits today but no real price yet. I’m done. So done. Tomorrow will be the test and we shall see how I do.

CC’s mom has been at her brother’s since Saturday until this afternoon, where we understood she walked around with them without the use of the walker, she participated and was completely sociable and basically pain free. She returned here and within the hour was in enough pain and tired that she spent the rest of the day in her room on her bed and left dinner early because she said she wasn’t feeling good.
Back to “normal” I guess. Bummer. Time to call it a day, it’s 8:00 PM

Monday, May 7, 2007

Monday, May 7, 2007

Yesterday was Joshy's birthday. I'll write more about that tomorrow.
We went to the Bay Area on Saturday and drove back home way late Sunday night...and I'm still tired, but CC got less sleep than I did. We're both really tired.

I'm going to call it for tonight and will spend some time writing in the morning, I hope...oh yeah, I head to UCSF tomorrow late morning for an extended EMG test with Dr. Ralph...this should be fun; a somewhat dull electric probe is stuck into my arm , shoulder, and hand (at least last time I had it done at Kaiser) to measure the amount of muscle damage present, called myopathy. Last EMG showed signs of moderate myopathy which, according to my original neurologist, was confirmation of the HKPP diagnosis when combined with my family history. That is not good enough for others, apparently.

Please pray for safety in our travels to the Bay Area and back.
Please also pray for our family, our house, our loan situation, our finances and CC's job, along with the whole Kaiser, illness and usual depression stuff on a daily basis.

It's a long life right now. I'm blessed my wife loves me and that my children love me.

More tomorrow or Wednesday.
-w

Thursday, May 03, 2007

Thursday, May 03, 2007

Pretty tired. Kind of long day with only one point of light headedness.
My productivity was in emailing and researching and compiling information for some important issues at hand.
I haven’t felt creative to play guitar in quite some time, let alone creative for really anything.
Mom and dad have helped us with so many things it’s difficult to list them all. Today is my dad’s birthday and he came up this morning to pick up my mom and drive her back home. He called to say that they had dinner together out to celebrate his birthday.
Tomorrow is my sister’s wedding anniversary and then the 6th is Joshua’s birthday.
PT tomorrow as well.

More tomorrow -

Monday, April 30, 2007 (parts 1 & 2)

Monday, April 30, 2007 (parts 1 and 2...scroll down for part 2)

Probably brief at the moment; it’s 12:09 PM and I came back, not too long ago, from my appointment at PT and worked out just a little less than “typical;” I suppose.
My attitude is just crappy and I’m feeling oddly anxious. I’m intentionally searching for “good” thoughts and “happy” thoughts and even what seem now to be kind of ridiculous “thoughts of contentment” in hopes of adopting ANY aspect of any of the above.

CC had to take her mom in to the ER yesterday right after church time because her back is hurting her more and more and the current meds don’t apparently help. She came back home at 2:00 AM this morning. Everybody loses out in that situation because the kids and I don’t have any time with her and her mom appears to be in enough pain that she needs to go to the hospital, but there isn’t anyone else taking her in but CC, so there you go. Sounds selfish of me, huh?
I just live in it, I guess. See why I’m looking for something positive to focus on? Being that I’m aware of my thoughts and all, it makes for incredible discontentment when I interpret my own motivations as being selfish or cynical, which mean there’s much discontentment running rampant. Maybe I’ll vent more later.

Echo Cardiogram today at Kaiser because…well, I think it’s because I asked for more investigation of my heart after reading my chart reports and noticing 8 of 12 EKGs as being abnormal to some extent with “enlarged left side of the heart” catching my eye but not catching anyone at Kaiser’s eye. Should my healthcare require THIS MUCH work from me? I only have faith in my primary and my Nephrologist, that’s it. All the others would prefer I just get the hell out of their hair and stop complaining about poor care and poor patient attention, especially the ER folks in Roseville. CC said the ER folks at Morse Ave hospital (a week ago last Friday) were very kind, attentive and even…caring [SHOCK].

Some family from the East coast have chosen to step into our hurricane and have blessed us beyond measurable scale, literally casting light into what feels like a shrouding darkness. Because of their care, they have given us an opportunity to “breath” under circumstances that would have eventually snuffed our chances to “breath” otherwise. I can only imagine the brilliance of the jewel to be added to their heavenly crown for the care and mercy they’ve shown us.

Time to head out to the Echo Cardiogram…I’ll share my heart from yesterday’s events at FOPC’s 9:30 service that we, as a family, attended.

yeh.
~~~~~~~~~~~~~~~~~~~~~

Monday, April 30, 2007 pt. 2

Sunday was an emotional rollercoaster, though that expression is annoyingly overused. Chris has invited me and the family to come to church, on any weekend that would work for us, so that he could express his appreciation to us in front of the congregation and ask the congregation to recognize my efforts in and for the church. During the 9:30 service, he did just that after Sara finished doing the announcements/Life of the Church segment.
He shared that a few staff members have left and expressed the sadness in seeing them go and then shared that another member was leaving as well and then he asked me to stand, and as I did a number of the congregation applauded and some in the choir stood up as they applauded. My concentration was on keeping my composure and not giving in to the mourning that was swirling around inside of me as he spoke. His words were very, very kind and, thanks to the recording Cookie gave me of the service, I’ll not forget them. He then asked my family to stand and when we did they applauded again. During their applause, Missy, who was sitting beside me on my left, clutched my arm and side very tight, in a half-embraced hug of support and love. It wasn’t until afterwards, after the focus resumed back to the front of the platform that I began to weep and nearly sob in a somewhat final recognition of leaving my post as director, servant, engineer, colleague, co-worker and friend of a number of staff there at FOPC. Towards the end of Chris’s public words to me, he asked me to forgive them (the church) for the times I was not supported/treated fairly, if I recall correctly. It was very kind of him and exemplary as a leader as well, in my damaged opinion.
Tears followed me throughout the remainder of my morning, on campus and off, as I thought through the finality of my undesired and un-preferred transition from being employed at FOP. I’ve shared before that this was not how I imagined “going out” and leaving my position at FOP. The love that some of the folks expressed and showed to me and my family in the few moments after service are moments I won’t forget and I will value as long as I have capability.

The echo cardiogram was done a couple hours back and was relatively painless except for the pressure points the technician had to press in order to accomplish the ultra sound of my heart. Another test finished. We wait now for another week or so for the results to be returned.

I’m hoping to go to dinner with CC tonight as a date if we can secure the dinners and homework with my mom to cover while we are (hopefully) out to dinner.

Prayers for strength, encouragement, uplifted attitude, help, rest and restoration – please.

peace

Saturday, April 28, 2007

Saturday, April 28, 2007

The last couple of days have been catastrophe free for the most part, I think in part to the fact that my parents are both up here with us and when they are here, I feel even more supported and relieved that CC is not battling on her own, outnumbered.

The past four or five days have been emotional roller coasters, worthy of some of the world's most incredible theme parks it would seem. I don't get off the ride unscathed; no one does. Communication is the key to surviving the trips, highs and low, peaks and valleys.

4:03 PM

peace

Friday, April 27, 2007

Friday, April 27, 2007

Yesterday morning reached a pretty low point for me and it was tough just keeping "composure", which I failed to do most of the morning while CC and I were together eating breakfast. I asked CC if we could go and see my Primary Care about a medicine change up or something, so we left and spent the morning in the waiting room then saw him for 45 minutes or so and have a form of a game plan for medicine modifications.

It's now Friday and I need to head off to Physical Therapy and then back again. Perhaps more chronicalling after that...
peace

Wednesday, April 25, 2007

Wednesday, April 25, 2007

2:45 PM
To say I’m struggling is simple and understated. I just wrote to my sister in more depth in hopes of satisfying my need to scream out at someone over what is happening to me and to us as a family. I guess I’ll know how well that worked as I continue to write until I feel done.

My mom left earlier this morning after seeing the kids off to school. She was a huge help to CC and I since this past Friday night. I’m not sure how we would have gotten through these past few days without her help. For sure, CC would have had to been off work, which we cannot afford.

Before leaving for PT this morning, my primary doc called to say that the labs from yesterday’s single draw for my potassium level came back high at 6.0 but my meter, taken at the same time as my lab showed 4.6. One of them is impressively wrong. I went in to get labs done again today after making it through an abbreviated version of my PT and it took them two tries; one on the back of my left hand which they were unsuccessful in finding and then successfully getting a draw after searching around briefly with the needle on the back of my right hand. The veins in my arms are too weak and recessed for them to use for blood draws now. It’s taken nearly 3 hours for the swelling to go down on my right hand after the draw. Both hands hurt.

The sweating and weakness have been more present today. Hard for us to understand. Doctors have no clues or ideas. They have no suggestions or solutions. I feel like there is an “emotional” sniper and a “physical strength” sniper, both working together in tandem, taking critical shots, one at a time and sometimes both at once, just picking me apart each time I stand up.

I’m wanting this blog to be a collection of facts and observations of this battle but I cannot help venting.
CC began a daily food and activity log after this past attack last Friday. Also, I’ve striving to eat “wheat free” as much as I possibly can to see if that has any affect on me; positive or negative.

I wish I could just stop all the medicines all together and be free from this hell that has encamped around and about me and my family. Maybe one day, but not today. Today’s physical and emotional rollercoaster just leaves me battered and bruised. I feel exhausted and outnumbered. There are far more “doctors” who feel that I’m not suffering from HKPP and any that do now, but not one of them has been able to constructively help us understand, anticipate or even prevent these attacks nor have any of them been able to suggest what it is that IS happening if it is not HKPP. How can a doctor, who admits that he/she knows little to nothing about HKPP, and has not actually seen a patient with confirmed HKPP, make ANY sort of educated presumptions or assumptions about HKPP as it may or may not relate to me? They admit that they know crap about HKPP but suggest that it is unlikely that I am suffering from it because I’m not an Asian male, the stereo-typical candidate for having HKPP according the Kaiser’s medical journals.

Boom, it’s 3:22 PM and after not having had the sweats for nearly two hours, they begin with a subtle burning type of sensation across the skin of my forehead, arms and legs and now I begin to sweat. I did nothing but type. I drank nothing, not even water at the time. I don’t normally feel it start like this; I normally just become aware that water is dripping off my chin or glasses, or eyebrows or that my shirt is stuck to chest and back.

Sweating does not seem to be consistently symptomatic with HKPP folks, though it is not uncommon either; some folks seem to deal with it while others are spared. But the weakness, the numbness, the paralysis, the muscle spasms, muscle cramps, muscle jumps at night and at rest, the attacks after high carb intake and intense or extensive physical exertion are ALL common factors with the dozens of others on the HKPP list serve.

For some unsolicited education, there is something called Myoclonus or Myoclonic jerks and they are described in Dorland's Medical Dictionary for Health Consumers as “myoclonus” /my·oc·lo·nus/ (mi-ok´lo-nus) – shock-like contractions of a muscle or a group of muscles. Myoclon´ic. Also noted in the same section and directly related are the following types of myoclonus:
- Essential myoclonus: myoclonus of unknown etiology, involving one or more muscles and elicited by excitement or an attempt at voluntary movement.
- Intention myoclonus: that occurring when voluntary muscle movement is initiated.
- Nocturnal myoclonus: nonpathological myoclonic jerks occurring as a person is falling asleep or is asleep.

I deal with Nocturnal myoclonus. It took me days of looking up symptoms to learn that there is a name for what I experience, something I have brought up to my collection of doctors that NONE of them have diagnosed. Should they have diagnosed it? I suppose not, actually, because none of them are specialists in ANY of the issues I’m contending with, with exception to Doctor Stewart of Nephrology who accurately diagnosed my case of Hyperaldosteronism, which is solidly within his scope of professional focus. In fact, he is one of two of the plethora of doctors I have seen who acknowledges that it IS possible for me to actually suffer from more than one single diagnosis; Dr. Fujioka is the second of the two and he is my primary doctor. All the rest of the docs refuse to accept the possibility that there are multiple diagnoses involved, so much so, that a couple of the referred doctors suggested that I be seen by the psychiatry department in case what I’m experiencing is not entirely physical. One of the folks on line in the HKPP List serve had shared that she received the same suggestion while she was seeking a diagnosis and that after she was seen by the behavioral science department, the presumptions from the psychiatrist were used to prevent her from obtaining a literal diagnosis and she was deemed, more or less, unstable. She then went to check out the docs in the local Muscular Dystrophy clinic and found that she was not unstable but was suffering from a rarely diagnosed disease called Hypokalemic Periodic Paralysis and that she was exhausted emotionally from battling her previous physicians for the past several months.

7:00 PM
Dinner was some regular pasta with chicken parmesan and a salad.
CC just went out with the kids to get some Baskin Robbins for dessert for all of us. My desserts now are very small portions of whatever they get. Moderation is the next key to abstention.
I still feel poorly and am worn down from what feels like a very long day. My emotional state is combustible and fairly fragile with memories, “what ifs”, “maybes” and regrets and mourning of activities I did not want to conclude but have been removed from.
Time to stop writing and space out in the TV direction since I don’t want to read or write anymore tonight.

Tuesday, April 24, 2007

Tuesday, April 24, 2007

Today is better than yesterday.
Labs came back from yesterday (10 tubes taken) and my K+ is riding high now at 5.3, the very top end of the K+ acceptable meter (the range is considered 3.5 to 5.3). More labs to be done this morning as well.
Muscle jumps prevent any consistent sleep; they seem to hit every 15 to 30 minutes or so. Some are pretty harsh while others are less obtrusive.
Still dealing with sweats and cold clammy skin; I changed clothes twice yesterday and I will change again this morning as well.

At this point, CC and I plan on being at FOPC this coming Sunday for both services. Lord willing, we’ll be able to see this through and be there on Sunday.

Our first night for the 40 days of community was to have been last Friday night, but due to the attack that morning, we didn’t go. Now we have to play “catch up ball” to get to where the rest of the group is.

My mom has been here since late Friday night, helping with me, the kids and CC’s mom. We are blessed to have the help.

I’ll plan to write more later. 9:21 AM
peace

It's been a rough day.

It's been a rough day.
Sweats and pain.
Weak and fatigued.
Maybe tomorrow will be better. Prayers for healing coveted.

Been a hard day. muscle

Been a hard day. muscle pains and spasms every so many minutes. Still need help to walk.
-texting from my bed.
Hurts.