This a my blog about my life and struggles with HKPP (a terminal disease); Conquests and set backs, relationships and the strengthened resolve of their survival.
Wednesday, February 28, 2007
Wednesday, February 28, 2007 – closing
What’s the word of the day? There are a few “words” of the day, today:
Scott Rose (My buddy now living in North Dakota who I’m now texting daily with. He was my song-writing partner since the mid/late-80's or so and throughout the 90's after my "L.A./Orange County" era. God has blessed me with some best friends and he's been one of them for many, many years now and I miss him greatly; especially now)
Dan Burke (my buddy who I got to have dinner with tonight)
Jim Boso (a very good and close family friend and retired Kaiser physician who wrote a letter yesterday to some of the Kaiser players in this battle and also treated my mom and I to lunch today with his wonderful wife Betty)
Success (as in my reception of an email letting me know that Kaiser has now relented and is approving my request for referral)
Relief (which might be in store for us if this referral is all it should be and not some half-baked “shut-up ploy” on the part of Kaiser)
The last word(s) would be Porcupine Tree (which is the name of a band that Dan burke told me about tonight and I have begun checking out their stuff and I LOVE it. WAY COOL stuff.).
My buddy Scott and his family (wife Kristy and son Adam) moved back to the Dakotas toward the end of last year and they are experiencing their first winter in a state that doesn’t blink and sub zero temperatures…he’s cold right about now but handling it in true Rose fashion; making frozen lemonade out of winter weather…of sorts. He’ll know what I mean.
Anyway, God lets him know when things have been tough with me physically and he just knows to call or pray at certain points and, I think to date, he’s known in the moment when I’ve been in the ER most each time. It’s a God thing, plain and simple. So he’s been texting me now for a week or so and I’ve been able to connect up that way and it’s been great for me. Big lift. My heart is for his return, but until that day (if that day comes) we have texting which will be very cool and convenient and we have been trying out sending some of our music via file sends to one another to see about playing music/recording music long distance…The Police did it, right…? Oh…maybe they had a little bit more money than us, but still…the concept is the same, I think. He knows; I miss him and his family quite a bit...daily.
I had dinner with Dan-oe tonight and was blessed again by just hanging out with him. His mind just flies and when you sit with him and join him in conversational flight, you never know where it will lead to or what topics you hit. I had a great time just catching up with him. He touches my heart every time I see him. He’s kind of like that distant brother that I might have grown up with in some way but we can never get enough time together to sort out our pasts, you know? Anyway, I had a real blessed time with him tonight and before leaving, he told me about this band he digs called “Porcupine Tree”…really, that’s their name…and they rock. Can’t really describe them; you just have to hear them. He suggests that they are Dream Theater meets Metallica and that’s true to some extent but I’d add some Pink Floyd in there as well as some Dogs of Peace too. Very, very cool and good stuff. Wow. Songs to check out: Buying New Soul, Cut Ribbon, Mellotron Scratch, Glass Arm Shattering
So Jim Boso has known of our plight with Kaiser and had come to see me when I was hospitalized this last time in San Carlos and, being a Kaiser alumnus, he couldn’t get his mind around the fact that we have been getting stonewalled at every turn with Kaiser. After reading our letter to rebut the last 9 page denial letter, he composed and wrote a letter to the main 2 players in Neurology and my PCP asking why it is that we are not making headway, especially given some of the recent negative developments (as in the last attack in San Carlos) and he suggested that they come together in some way so that we don’t have to report this to the State…and then, less than 24 hours later, I’ve been sent an email that my request has been approved. Now, granted, I have not received anything official yet and hope to sometime very soon, but this sounds to my like his email hit the right place, doesn’t it to you? Whatever the case, it blesses me to be with Jim and Betty, whether it's at TPC, on the street someplace or in a little Mediterranean cafe in downtown San Carlos.
Oh yes, also on the same note, our Disability has contacted us and let us know that we will being receiving a monthly check beginning this next month. HUGE for us to FINALLY have some consistent help coming through from the folks we’ve been waiting on for 90 days now. Could this be a turn-a-round that we’ve been praying and waiting for? Lord God, I hope so and pray so. No that’s not blasphemy; I meant it literally.
I’m still kind of in a state of shock…on all sides, really.
I head back to Sac tomorrow, riding with my good friend Art Yeap, who has business up in Sac and has offered to provide me with transportation back up there. I’m really looking forward to this being that he and I have wonderful conversations (as far as I am concerned) and I haven’t had much time with him in several months, especially since all of this medical stuff has kicked into gear.
That’s it for now…FINALLY SOME GOOD NEWS!!!!!!!
Rock on.
Wednesday, February 28, 2007 - morning
Good morning. I am in the Bay Area (again) to attend an appointment with my parent's family physician becasue of an interest he has tajen in my medical plight to receive a referral to UCSF. He has agreed to see me this morning and our hope is that the conclusion of this appointment will also bring a hoped for referral. Prayers towards that particular end are certainly apreciated.
Also, a letter has been constructed and sent to the key physcians involved in this "thing", written by another family friend who is himself a retired physician. It is moving now...prayers there too...
Sunday, February 25, 2007
Sunday, February 25, 2007
It’s now 2:50 PM and fortunately, today is better than yesterday.
I slept pretty hard all night but was in pain for the better part of the night and awoke in pain as well. CC got up earlier than not, I think, and we talked about how I was feeling and she went and made something for me to eat and also brought me my meds to take earlier than later.
I was able to get myself out of bed and into the bathroom more easily than I was yesterday, and I also got myself into the shower and out but began to loose strength shortly thereafter.
I made myself some lunch (reheating dinner) and am on the couch now resting. Again.
It is so frustrating to be so weak when I know I could be so much stronger than I am.
All morning and afternoon, there has not been but a minute when different muscles throughout my body literally vibrate in spasms, as if in response to some sort of neurological muscular role call taking place within my body. Parts of my lips begin to spasm, my tongue, my eyes, my eyelids, my fingers, my hands, arms, legs, toes etc.
Thursday must have been hell day for my abs in particular since they are the most painful, still.
This is surreal to me. It’s hard to believe that this is really happening sometimes.
I was planning on seeing my buddies, David and Brian from the Bay Area this week, but now need to postpone because of the need to convalesce here and I wouldn’t be able to really enjoy their company feeling like this.
I couldn’t drive if my life depended on it, more than likely. My legs are very uncooperative currently.
Kaiser, according to their most recent denial letter, is basing their denial on Dr. Gibb’s 35 minute appointment with me. Never mind the 4 plus appointments I had with Dr. Iyengar of Neurology, where he declared and medically justified his diagnosis with an EMG test for muscle myopathy, apparently Dr. Gibbs opinion trumps Dr. Iyengar’s opinion as far as Kaiser’s Member Services Board is concerned. Not only is the board denying my request, but they are also stating to us what our only options are, as far as they are concerned. They are kindly giving us until Tuesday to file an appeal, which will be reviewed by the same folks and perhaps some of their close, departmental friends, at which point we should be confident that they will approach my appeal without bias, right? I mean, I shouldn’t have to worry that our appeal will be treated as the past appeals have been, right?
Amazing, huh?
My current thought is that Channel 4’s “On Your Side” or Channel 7’s “On Your Side” would consider taking an interest in our situation and current plight, if we were to bring it to there attention, since it involves the ever confident Kaiser Permanente. I feel strongly that what is happening within the Kaiser system itself, is political and financially motivated in some manner and we are simply caught in the company’s riptide of results as different doctors apparently sound-off in some sort of posturing for departmental status, position or power, and thus by default, we are some type of medical pawn which, if left up to the committees, will be forgettable and unremarkable in terms of the big “Kaiser” picture. Perhaps I’m wrong and perhaps I am not seeing the “greater good” in the whole picture…but I doubt it. I sincerely doubt it.
What matters to me most? To secure current and future medical care that I can be confident in, that I can trust and rely on to make medical decisions and suggestions in my best interests. To date, regrettably, that care is not through Kaiser and that saddens and frustrates me.
Life here in the house seems to be “normal” in as much as we live that anymore. CC’s niece Angel, came up to help CC and us keep some cleanliness in the home, but had to leave today to head back home to Hollister.
It's now 4:40 PM and because I'm still having pain in my legs and hips as well as weakness, we're going to go in and have my labs drawn now. Back later-
Saturday, February 24, 2007
Saturday, February 24, 2007 pt.2 also brief
It’s 10:20 PM and way late for the night.
I’m in far better shape than I was earlier today and can type easily now.
I’m still collecting more info on what all took place on Thursday and Friday and will add more tomorrow, more than likely.
I can walk better, still very slow and calculated with the cane, but at least I can get up and walk.
We did get the reply from Kaiser stating, once again, that we are denied in our request for referral to UCSF, so we appeal again and this time follow the advice we just received from a good friend who was a physician, as to how to proceed.
Continued prayers for recovery are still coveted and appreciated.
More tomorrow –
peace
Saturday, February 24, 2007 - brief
Typing is difficult today. I plan to write more when I can.
Thursday was hell day. Back in ER and admitted in Redwood City.
Potassium was high this time and phosphorus was low.
Don't remember very much, just moments and images and voices around me.
Home now and living out the viciousness of the attack. Hurting so much.
prayer for recovery and pain relief is a dream.
I know God is my strength. I am weak. Feel like a defective husband and father.
tough times for now.
Wednesday, February 21, 2007
Wednesday, February 21, 2007
This likely be another brief entry; reflecting on the past 24 hours or so.
Yesterday was a crowded day, but one of many wonderful moments, some of those moments being shorter than preferred as well.
My morning, yesterday, was spent with Missy and Josh working on their respective homework and though I didn’t feel I made as impacting an influence on them as I desired to, I think they accomplished their targeted goal. After being with them for the morning, I borrowed dad’s truck and drove down to MPPC and spent a few hours there with some of my friends. As I waited outside Doug’s door for our 1:00 PM meet, he came out from a doorway further down the hallway, along with some of the other staff of the Worship Department, so my blessing was multiplied by getting to see Debbie, Sue, Jane and Anton; I was further blessed by being the recipient of some long-missed loving hugs from some of my favorite ladies of Worship.
More than blessed me.
After seeing them, ever so briefly, I moved into Doug’s office and we sat in our “usual” seats in his office, both chuckling at the fact that he offered me the chair next to his desk, which he ALWAYS would offer me when I would come to his office for a “chat”, whether one I wanted or not, but I would always refuse the offer (which I refused again yesterday) because whenever we would have staff meetings in his office, particularly on Monday mornings, Debbie would sit in that chair…no else ever really dared to sit in it because it is Debbie’s Chair…not so much that she thought so, but we all did, and it was often funny to us as a staff but along with it being funny yesterday, it was poignant for a moment in reflection and appreciation; a very unique moment for me, even in its humor. So, moving on. Doug and talked together for nearly an hour and that was very special to me. He doesn’t give his time freely and values it almost strategically in a sense, but in reflection now, it’s not a negative thing to me as I think I perceived at one time; those who get some quality time with him have an appreciation for that time and I enjoyed my time there, then. Don’t interpret criticism ANYWHERE into the previous paragraph, none was written or intended. Cool? Cool.
After leaving his office, I strolled to Robert Iriartborde’s office (in the same wing of buildings my office was in) and got to see Pastor Frank VanderZwan and catch up with him for a few minutes. By far, he was my favorite pastor at MPPC during my tenure there. After chatting with him briefly, I hung out with Robert in his office for a few minutes. Jesse Rice came in and said "hi" which was cool and then James Benton did the same and then Trudi came into the office area and said that she had heard that there had been a reported “Wade Sighting” and she went out on the hunt looking to see if it was true. Made me feel pretty good, plus Trudi is one of those friends whose value in “friendship interest” compounds with time. Then I left Rob’s office and joined Trudi and my dear friend Kent as they walked together to Peet’s Coffee, literally across the street from the church, which is apparently their daily tradition, or ritual, depending on who you ask. They scored their double-shot-espresso-fix while I was treated to a hot chocolate…yes, I do believe most are embarrassed to order drinks with or for me…anyway, Trudi headed back to campus and Kent and I sat in a corner of Peet’s and reminisced, joked, laughed, enjoyed, listened and shared life with one another for the little time we had together. Once again, I found myself desiring to stay for the day to just shadow him and listen to him and his words of tangible wisdom which bless the hearts and souls of those who slow down long enough to hear them. Kent is the definition of “my friend”. He is my friend and I am blessed.
I left MPPC and went back to San Carlos and met up with CC, Kirsten and the kids at Burton Park, where they were playing ball and having fun.
From there we went to Mi Ranchito for dinner and then some ice cream and then back home. After being home for a while, my buddy of so many years, Dan Cooperider came by and we talked for a good couple hours. He’s one of those close, real, genuine honest friends. I thought my day wouldn’t get any better after getting the hugs in the hallway at MPPC…and here I am hanging out with who was my guitar mentor and truly is my very, very good friend of many, many years. He hung out for a while and we laughed a lot and had a great time sitting and talking. Once again, I was blessed nearly beyond words.
Today was our trip to San Jose and the Tech Museum for the entire day. We had a GREAT time and I lasted the whole day! We had the best family time together even through dinner at Armadillo Willie’s in Los Altos; think beef brisket that’s been smoking for several hours…it’s “oh my goodness” good.
We stopped in on the Ash Wednesday service at TPC and then came home and now are heading to bed…er..couch. CC’s already in her sleeping bag and I’m closing this out. Tomorrow is early lunch with Art Yeap and his wife Katherine in the City and then back home. Prayers for safe travels are coveted.
peace
Monday, February 19, 2007
Monday, February 19, 2007
The last series of days have been moving through in rapid pace and succession, as I suppose is the only way they can go through, no? Duh. Anyway, I forgot to share about the visit to Social Security on Thursday morning.
I went there at 11:00 as was the appointment, and though I wanted them to call me AFTER CC got there, they called my right on time. The armed guard searched my bag very carefully and thoroughly and then passed me through to the young man who called me in. Our representative was a young guy in his late twenties, I think, and he explained the whole information gathering process to me and then began to gather the details of my life for the past 15 years, almost one detail at a time. CC arrived shortly after we began and I was immediately more at ease. It took us about 90 minutes or so to complete the process and this young man was very kind, compassionate and empathetic as well. Truly, he was God’s answer to our prayers for this occasion. After completely giving all the info asked of us, he shared with us that it will now take 3 to 6 MONTHS for Social Security to either accept or deny the claim. He said it is not uncommon for them to deny it (simply, he thinks, because they want to weed out those who don’t need it bad enough to repeat the process) and for us to then appeal the decision and then have them to approve us on the appeal. Care to guess what our new, NUMBER ONE prayer request is? Please do pray for this to not be denied and for it not to take even 3 months for them to APPROVE our request. If you would, please send this off to any prayer chains that you are involved with so that we can cover this entire matter in prayer. Please.
I had lunch with my buddies Brian Kunz and David Swartz today. What a blessing to me these friends are. I really enjoyed my time with them and have already emailed them that fact, so I’m gimping out on sharing this with them indirectly or something like that, thank you very much. Anyway, I have a great time with them whenever we are able to get together and this time was no exception.
My niece came back last night from Hungary (actually, she came back the night before from Hungary and she came in last night from New York, but you get the picture. She’s been gone for the past 6 months and we all have missed her terribly at points and were blessed on a few occasions to speak with her by phone and then a couple times, just before she was to come back, I got to see her via webcam as we chatted internationally one afternoon and then the next morning with Joshy and Missy as well. How incredible. The pic here shows also my nephew in the immediate background...I'm likely to layeth the smacketh downeth upon him for messin' the shot up...
CC drove back to home yesterday after we went to church together to MPPC as a family. I’ll share more of my thoughts about the service maybe tomorrow, I’m tired now, but I have some thoughts on the morning…no surprise, huh?
Please be praying for CC’s safe travel back to us tomorrow after working in the morning and please be praying for our collective travels for the next few days around the Bay Area and then for our safe travel back to home on Thursday.
Sunday, February 18, 2007
Sunday. February 18, 2007
So we are now down in the Bay Area and I neglected to get another entry off in the past 48 hours...grrrrr.
It's Sunday morning actually, and we are heading to MPPC's 11:00 service once everyone's ready to go.
My K+ was 3.7 yesterday afternoon/evening and it truly felt that way. We were at my sister's place for dinner last night and got to see Lisa and Gonzo and their daughter Izzy. It was very cool to see them and talk to them.
As the night progressed, I felt more and more exhausted and was falling asleep at the table. *embarrassing*.
Once we got back to my parent's place, I went right to sleep on the couch and was gone for the rest of the night; very hard sleep until morning.
Today should be a fairly kick back day with hopefully some real focused worship time and message, plus I'll get to see my friends from MPPC if they're all working.
We'll do more later.
It's 10:00 AM currently.
peace
Thursday, February 15, 2007
Thursday morning, February 15, 2007 - brief
Well, woke up this morning and felt very good. Didn't even wonder where my cane is.
Took my potassium at 9:00 AM and it is 4.9.
When my K+ is in the 4.7 to 5.1 or 5.2 range, I feel great, physically. I feel like I am *normal*, so to speak.
It is almost incomprehensible to me how my body's potassium can control me like this. Literally, I am simply amazed. I'm also GRATEFUL beyond words as well. I'm almost anxious to see what I can accomplish today.
More later-
peace.
Wednesday, February 14, 2007
Wednesday, February 7, 2007 addendum
This add-on is specifically for a prayer request and to let you know that I added a pic to the blog below after I posted it this afternoon.
Tomorrow at 11:01 AM I am to meet with Social Security Officials regarding turning in my application for SSD Disability claim. CC can’t get there until almost 11:30 since she’ll be coming straight from work.
My requests are:
- That they call me in AFTER CC gets there so that we are together and that I don’t go in by myself.
- That God will clear the path for this claim to get through with no hindrances.
- That no one will contest the claim and that it is accepted and processed.
- That we will have brought to them all the documents they require to process the claim.
- That God will open the floodgates of financial support for my family and that we will have enough to give away to others in need as well.
Wednesday, February 7, 2007
It’s Wednesday and my potassium at 2:00 PM was 4.2
I’m actually feeling relatively well, all things considered. Once again, CC got up with the kids and allowed me to sleep in for a little while. I got up at 7:30, got to see the kids before they took off for school which is a big moral boost for me each morning. CC had her doc appointment at 9, so she figured she would just get them up and going for this morning being that she had to get up and ready to go to her appointment anyway.
I went and had breakfast with Rob and that time, as our time always is, was very cool and fairly kick back. Rob, if you are reading this, thanks for the time this morning, I really enjoyed the time with you. Have a great valentine’s day/evening bro.
Also as last was at this time, my walking isn’t as difficult as it could be and I’m walking about the house without the cane, for the most part. I feel blessed that it is no longer an attitude thing to use the cane as it was, though I’d be elated to never use one again, at this point in my life, I’m blessed to be vertical and mobile. I should end that one right there.
Still experiencing small spasms here and there as well as the crazy body sweats and body temp chilling to where my hands and arms are cold as ice (Foreigner tune reference…) so I’ve already had to change 2 shirts so far due to them being very damp from sweat. Yucky, I agree and maybe more info than you would have wanted, but then again, I can write anything I want…
I cancelled my “Behavioral Medicine” appointment and will not reschedule it. I was strongly cautioned by a couple folks on the HKPP list that it is far more likely that the results of that appointment would likely be used in favor of Kaiser’s “flavors, theories and hypotheses” rather then use in ruling out issues and such, if that makes sense. In other words, I don’t want to contribute to something that might turn around and be used against me while I am pursuing better behavior on the part of the Kaiser folks. Some folks on line shared that their evaluations were ultimately used against their diagnosis rather than the other way around. Kind of like my taking the genetics test and then having those within the system there use that as evidence against my diagnosis. The WHOLE thing is STUPID, however, there is a whole thing to be reckoned with, like it or not, so I need to be vigilant as well as diligent in my efforts to receive adequate and appropriate medical care and attention; something I should NOT have to fight for, period. The whole topic just pisses me off.
Us.
I Got CC a heart-shaped box of candy with a card along with a small, but colorful, bouquet of flowers for her and the kids and Nana as well. We had agreed with each other that we would not get each other anything because of our financial state, but I figured that if there is an agreement we SHOULDN’T have to make, THAT would be one of them so I broke the agreement. So there.
She deserves flowers every morning.
She deserves a card of love each day.
She deserves breakfast in bed.
She deserves a life without migraines.
She deserves far better than me, but I’ve been given a gift to love, care for and cherish for all of my days regardless of where I may be.
He gave her to me and He gave me to her permanently 18 years ago this coming September.
I realized my gift 24 years ago, meeting her in a dance club in Saratoga and have since learned what it truly means to love someone with all that you humanly have.
She’s more beautiful now than she was then, and back then she turned heads in every club and mall she entered.
She is my love.
She is my valentine.
She is my wife.
A priceless gift.
Fine
Peace-
Tuesday, February 13, 2007
Tuesday, February 13, 2007
It’s 8:05 AM on Tuesday morning and my mood is crap.
Joshy came into our bed sometime during the night and from that time on, I played the part of a kicking bag and pushing bag. No real sleep from that point forward. Add to that our oldest cat, Shadow, who scratches on any door that’s closed. Normally, that’s our bathroom door and so you can add the sound of scratching on painted wood to the early morning mood chemistry. I guess, just simply put, I’m angry. And that’s a sucky way to start a day, no? Shadow’s almost 18 years old…Joshy’s 7 years old…not like there’s anything to do but just deal with it, but that doesn’t make things any easier. I’m probably going to have to be the bad guy, AGAIN, and lay out that there will be no coming into bed with us for longer than a couple minutes of reassurance and that’s it. Back into their own bed after that. Nothing I can do about Shadow, unfortunately. Grrr….
Yeah, so, moving on.
One of the techs, Robert Patterson from our crew, came by last night after finishing a service at FOP. It was very cool to have some time just hanging out and chatting up for a little bit. He has some physical healing that could use our intercession, so I’d ask those who do, to pray for his healing of some rib pain he’s experiencing. It was very cool to see him and have the time to talk.
Afternoon/evening now...
Speaking of friends, TK came by Sunday afternoon to take a look at the Ramcharger and see if he could help me with it and don’t you know he fixed the electrical issue! Serious Rock. I am and was stoked. Although he came expecting to deal with the regulator installation, being that my dad had already done that, he went after the electrical and nailed it. There was a small group of black wires coming from the battery positive post that ended up all bunched together and wrapped to death in electrical tape. Some of the *exposed* wire was corroded and as it turned out, the needed power lead from the battery to the regulator was to have been one of those wires…but it had disintegrated and fallen off a couple weeks back, at least, if not way back when my buddy Erin borrowed the truck. Anyway, bottom line is that we are back up and going now. With that being fixed, it helps to shed better light on whether to keep the Ramcharger and fix it (probably about $2,500 to 3,000 in needed repairs) or spend that same money on another vehicle. TK suggested that we consider the fact that with the Ramcharger, we KNOW what is wrong and what we are dealing with where if we buy another vehicle for under $5,000 we will likely be making repairs within months if not immediately, anyway. More prayer, more thought as to what to do…we HAVE to do something, one way or another.
On the same front, I had lunch with TK this afternoon and just really enjoyed our time chatting and catching up as well. God has been blessing me with opportunity and availability (ya think?) over the time I’ve been away from the day/night job and I have been able to see some folks I wouldn’t have otherwise, and TK is one of those guys. A loyal friend, hard worker, good dad and loving husband and someone I enjoy and respect. I’m hoping to have some time on the water with him this year. We wanted to do it last year but never really got the chance. TK has also offered to help me with the truck, when it comes to working on replacing the gaskets and all, even possibly on the transmission as well.
Yesterday, Monday, My buddy Craig came over and we began the investigation of something we are calling Tech Talk 2007 which is, we hope, going to be a podcast recording of Craig and I answering questions of a Media Technology origin, sent to us via email:
On Sunday, we went to Sun Valley Church (Baptist) for their 9:00 service. They’re located on Sunrise Blvd down in Rancho Cordova, toward Hwy 50, across from Chevy’s (more or less). We enjoyed the service there where the pastor spoke on Youth, Aged and Dying. Earlier in the week, I had met with the Worship Pastor there, Tom Payne. He introduced himself to me on the Yahoo Music Group for Worship Music/Pastors. I participate in the list to help be a technical voice among the directors and pastors who find themselves in need of technical advice without the bias of a manufacturer’s view or opinion. Sometimes manufacturers will be on lists like these to sell more goods by participating in discussions where they feel they can suggest their stuff without much concern for competition. Anyway, I met him at his church after a few emails back and forth, and I hope to provide him with some suggestions and advice as well as some critique of his current scenario. It was intentional for me to not critique the service that past weekend, while IN the service. I’m going to strive to recall all I can from the service, but I was clear to myself that I was not there to evaluate but to participate and be fed. That takes effort for me. It’s unnatural; I instinctively critique presentations in services, shows and concerts.
After the 9:00 Sun Valley service, I dropped everyone but Missy off at home and then went to FOP’s 11:00 services. I find as I drive in that there are small signs in front of the Worship Center and after parking and walking to them I understand that the Worship Center flooded, AGAIN, and that all services are being held in the FLC. As I understand it, there was water flowing from the stage down the steps onto the flooring in front of the first set of pews. I understand that it was coming into the building through the Prayer Room entrances into the Worship Center. Geoff said that all of our gear was dry except the UPS unit which was on the floor of the Chancel, next to the Prayer Room entrances. If we lost it, it would be only one piece of many that could have been lost or damaged by the flood. This building has flooded before this year. I’m understanding that some other folks are getting involved in some structural solutions to prevent this from happening again. We shall see.
I was so proud to see the crew knocking it out, I can’t tell you how that feels. The closest word I can use appropriately is “PROUD”. It’s been my blessing to be counted among them. They have come so far from where they were when I was hired and getting to know some of them, and I know their growth is because they have been working hard to learn and improve each weekend they’re on, pretty much. They show such a wonderful and infectious spirit that it shows in their work and in their faces. Even when they’re serious at their work, they still have a clarity in their eyes which lets me know that they are accomplishing their tasks with the right and desired heart for the work and task they are performing. It is a constant frustration for me to not be there and not doing what I was trained and inspired to do, however, it is a blessing to see those that I worked with and watched over each weekend, rolling up their sleeves and getting in it and pushing the bar forward each weekend.
Some things have become clearer for me since my absence from the trenches and one of those things was that it was important for me to be removed from the stream’s flow so that others could be placed within the stream’s depths in order to better manage the waters and flow. That’s not to say that I was ineffective or blemished in the product, but to say that God had plans for others on the team and others who were waiting to be a part of the team and my absence moved that process forward, bringing those folks into the foreground and bringing them into the mix, so to speak.
I miss them. Each of them. They became the real joy of my gig. I’m thankful for each of them.
Earlier this past week I was fortunate enough to lock up some time with my friend Mark from church. We had breakfast together and just caught up and chatted over a couple of omelets. He’s one of the very few folks, outside of the tech team, that I have become friends with from the church body itself. He’s going to help me get back into some muscular and cardiovascular shape and has a true heart for God. I feel he is wise beyond his years and that he’s a blessing to his friends and colleagues. He told me to let him know when it is that we plan on going after the major cleaning and caring for the house and he offered to organize a work party to help us accomplish the monstrous task.
Good stuff. Good friend.
Frustrating: my potassium monitor needs calibrating again. I haven’t taken my K+ reading in a couple days and MUST get my act together and calibrate the meter. I have time tonight…I need to get it done.
Oh yes, I almost forgot to note that our good family friend, Renee and her kids, came over here for dinner the other night. She made yummy chicken and dumplings from scratch and we just hung out around the dinner table; Renee, CC and me and we talked until it was time to get them home and us to bed. We had been holding on to their Christmas presents since Christmas! We had our Christmas celebration after dinner. It was pretty cool.
Stresses continue to build on the home front; we need prayer and space. Probably in that order too. It’s getting challenging since I have begun verbally identifying the negative and demeaning responses, reactions and questions which have unfortunately been part of our every day life now for the past 3 years. The kids are now used to it and respond in kind more often than not without my correction anymore. Unless I ignore it, I take it on face first and simply have to deal with the fall out. CC pretty much does the same, but it is obviously more difficult for her. *sigh*.
CC and I are fine; no issues there at all (for the realistic part of it anyway. She's my valentine of 23 years, 18th year my bride.)
While at Karate tonight, I spoke to Sensei about his possibly considering a podcast of his own from the school and he liked the idea as well as shared his thought of creating a rehearsal CD for the students which would include rehearsal curriculums that they could work out to including his calling out moves for them to do in real time. It was encouraging to have something I could do for the dojo since he’s been so very kind to our family and has been a very good and wise friend to me personally. It would require me coming with a laptop, microphone, mic cable and USB Mic Pre and we’d be on our way.
A pretty cool song that’s been stuck in both Missy's and my head is “Made Me Glad” by Miriam Webster. It’s sung by all sorts of folks, but I found a copy of Hillsong doing it and it stirs emotions within me as I listen. I’ve starved myself over many years now…it’s good to drink and eat in the spiritual sense. It’s very unfortunate that my vocation came with such a price, a price I was not disciplined enough not to pay.
Time for tomorrow-
peace
Friday, February 09, 2007
Friday, February 09, 2007
It’s 8:56 PM now and I’m going to call it a day.
Brief one tonight.
Potassium was 4.1 this AM and again explains my pains and fatigue and all.
Seriously frustrating.
AAMCO called to say that the transmission needs to be rebuilt/replaced, end of story. Motor mount is broken, 2 U Joints need to be replaced etc. Looks like a couple grand for that work itself. A suggestion was made that we’ll probably have to come up with a couple grand for a vehicle as well, so do we want to put the money into the truck and invest in it, given the body’s excellent shape and interior’s excellent shape? My dad is pretty confident that he could man-handle the gasket repairs that are necessary on the engine…so I don’t know. TK, Carl, I’d still like you guys to take a look at it if and when you have the time in hopes that we can figure out some solution. I wish I was auto-mechanically-inclined, but I’m not so much, plus the whole muscle thing screws up my intentions anyway.
No word from Kaiser yet.
This is where we are for now.
Thursday, February 08, 2007
Thursday, February 08, 2007 - finished
This morning my blood sugar is 105
My potassium is 4.0
Hip pain, lower back pain, weak, need a cane to walk
Frustrated.
Taking 10mEq of liquid potassium with some apple juice
Within probably 15 to 20 minutes, I was clear-headed (more-so than I was before I took it. I wasn’t aware that I was foggy until after taking the potassium) and feeling stronger, for lack of a better word.
Nice.
Kaiser sent us a letter in recognition of the email I had sent them asking for a referral to UCSF to Dr. Ralph. Funny; The letter states that they are considering my request for the referral to UCSF but specifically for the study that was/is being conducted. I didn’t ask for that in my email this last time. I just asked for a straight up referral. I find it humorous that they assumed the intent of my request, incorrectly.
So, I’m going to stop writing this and write another email to them correcting the error they have noted as to intent and will send that off to clarify.
Kaiser, unfortunately, seems to think that HKPP is impressively rare and that there are very few doctors world-wide that even know of the disease, let alone treat it, etc. They are wrong. And their ignorance and defensiveness on the matter is problematic for any patients who may be suffering from the disease. Inappropriate and unprofessional, in my opinion.
I almost forgot to include that fact that I made a new friend yesterday through the Church Music List on Yahoo. He's the Worship Pastor at a church in Rancho Cordova and was hoping for some assistance in changing stage volume, set up and communication/control of the technical and stage aspects. I'm excited to help and get to know him further.
Moving on, back in a bit…
It’s now 7:35 and I just took my potassium again and it is 3.9, which answers why I feel as I do again. It tracks to a great extent. While at Karate tonight, all of a sudden I began to sweat like crazy, especially my head and torso. My glasses began to fog and had to be taken off. Muscle aches in my lower back and mid-back in particular and just over-all weakness. I just ate a banana and am now going to go and sit down for dinner as well.
More on the truck and what we’ve learned on it today…
Actually, just finished dinner and I feel fairly lousy, so I’m going to bed. It’s 8:00 PM.
The truck is at an AAMCO dealer in Rancho Cordova to check out the transmission; I should know more from them tomorrow by noon.
peace
Wednesday, February 07, 2007
Wednesday, February 7, 2007
It’s Wednesday and my potassium at 8:45 AM was 4.2
Blood sugar was 97
I’m feeling tired and somewhat sore, though CC got up with the kids and allowed me to sleep in. Feeling some guilt about that, since today was her morning off from work and her opportunity to sleep in too. I wasn’t confident I’d be very effective this morning.
Blah.
Walking isn’t as difficult as it might be, but I’m not feeling like it would be wise to not have the cane with me.
Small spasms here and there but not anything like yesterday.
Missed my Physical Medicine Appointment this morning at Kaiser…I KNEW I had an appointment today, but could not remember it and didn’t remember seeing it on the Kaiser website for upcoming appointments. Also a grrrrrrrr. I have to reschedule it, hopefully not months away.
I’d like to stop and focus on reading some in the bible today and take some notes. I always feel better after reading it; somewhat the food for the spirit and soul kind of thing.
Prayers for metabolic stability today and decrease in pain
Mom, $69.76 is the total cost for the books you ordered.
Found out this morning that the hot shower does bring relief. Normally, I'm in/out as quickly as feasible, but this morning I took my time. I feel better.
More to come…
Peace-
Tuesday, February 06, 2007
Tuesday, February 6, 2007
It’s Tuesday and my potassium at 11:15 AM was 3.9
Blood sugar was 115
Very sweaty and cold. Have gone through a full change of clothes because of sweating excessively.
It’s all internal because the house is normal mid-60’s temp. My cap had to come off because it was soaked.
Small chills rumble through my torso and chest.
My hands have been freezing.
Breakfast first was small oatmeal at 7:00 AM and then some steak and potatoes and sweet carrots at 10:00ish.
Last night’s dinner was tri tip, potato with butter & sour cream and sweet carrots and salad with balsamic vinaigrette.
Yesterday’s lunch was…I don’t remember what it was.
Yesterday’s breakfast was 2 pieces of French toast with butter and some powdered sugar.
Spasms in my arms and legs currently.
Heading out to Costco and Walmart.
I ate a banana as we were walking out the door.
While we were out at Costco and Walmart I began to feel worse; all over body pain, back pain, leg pains, some confusion, weakness, jaw became stiff and sore, concentrated spasms in larger muscles in my legs, arms and torso. As CC drove home, I had a sense of deja vu from being driven to the hospital in the van; the sounds of the van, the smell, the turns left to right and the difficulty remaining seated correctly.
Although I began the day walking fairly “normal” and just feeling the noted above symptoms, within 4 hours I was having a hard time just walking.
When we got home, I made it, by my self, into the bedroom and lay down for a rest. CC came in and gave me some Tylenol and shortly thereafter, I went to sleep.
I woke up 3 hours later with no sweating, no chills, hands feeling normal and only a few occasional spasms and muscle jumps. I got up, clearly still needed the cane, walked in to the dining/family room and checked my potassium: at 4:30 my potassium was 4.5.
I believe we can deduce the following from this information:
- A banana can make a significant difference.
- my potassium had dropped during the night/early morning
- when my potassium is below 4.0, I suffer the now typical/known symptoms of: sweaty, clammy, cold, chills in my torso and chest, spasms in my arms and legs.
- when the potassium is “low” for me, I should take a half to full dose of potassium to stop the painful symptoms.
We want to know what a regular banana equates to in terms of K+ numerical equivalent. We also want to know what a half and full dose equivalent is in terms of the K+ number We aren’t certain how to determine it, but I plan to ask my online folks about knowing some of the answers to the questions I have. We’ll see what answers I get over the next few days.
I’m back on a cane for the foreseeable future now, but that’s far better than being in a hospital bed or ER, which was close today. As close as it has been.
On to another topic, or as Monty Python would say, “And now for something completely different”.
I’m on a Yahoo Groups Church Music list which is comprised mostly of Worship Pastors, Ministers of Music and some tech pastors, choir directors and accompanists. A question was posted today asking what gear and process should be considered for creating a church plant. So, needing no further invitation than that, my answer was the following and I thought it might prove thought provoking here as well and I’d be very interested to know if anyone has additional thoughts on it past what I suggested or in opposition to what I suggested. I’m curious to know. It's not a completely finished product, but pretty much going where I wanted to go...
Anyway, here you go:
~~~~~~~
Church in a box?
A basic “How To” of what to consider if you are planning a church plant in a school or other venue (not necessarily a home)
Crew (It’s pretty important to a church who sets up and strikes each weekend)
Assemble a team that can be split into two groups, if possible. Assign them the task of technical (limited) ownership and responsibility over the set up/operation/strike and storing of the new equipment. I would, however, caution you against a large rotating crew of people who might not be as focused as need be. It is preferable to have folks cross-trained on different focuses of technical ministry, but see if you can group your volunteers or staff into Audio, Video, Lighting and CG (Computer Graphics). Everyone on the team can learn to correctly wrap cords (figure 8 style) and can learn what cables and pieces of equipment go in what box or container, but when it comes to operations, you will want focused training for certain individuals who will be responsible for what your congregation sees and hears. The rest of the crew will be vital to set it up and get it running, then struck and loaded securely. You will find that people will excel in the areas they are comfortable and confident in and when possible, it is best to equip them into those areas, if you understand what I mean. I am a true believer in having some bench depth in each area but I would caution you to give the crews a series of weekends on then off in order to maintain consistency and routine.
Projector
Before determining a projector, it is critical to determine its probable location and distance from intended screen or surface. This will help determine the size of the lens needed.
It is also most critical to determine the amount of expected light that will be used in the room when the projector will be used. This helps to ball-park the number of lumens necessary to adequately show the projected images.
I cannot begin to stress the importance of bringing in a professional systems contractor/consultant on this one to make certain you get what you need instead of what’s on sale or is over-stocked and being “blown out”, if you understand. All projectors are not created equal and it is far from wise, in my opinion, that someone with no experience in this field can appropriately suggest and recommend the proper lens and projector. If you need a suggestion for a competent consultant or integrator, I’d be happy to suggest one to you at your request.
Laptop computer
If possible, I would suggest having the laptop be a dedicated laptop for the purposes of graphics use for projection. This will limit and specify the necessary software and potentially keep the laptop in fater working order than if it as used for “normal” desktop processing and use which can clog up the works, so to speak.
The concerns here are to pay particular attention to processor power, hard drive size, hard drive speed, video card with extended desktop capability with as much RAM as can be afforded, having a silly amount of memory, particular software needed and not, external hard drive (silly fast and large if possible) for media clips (MPEGS, AVI, etc.), DVD burner, network capability.
You want speed and efficiency over looks and tons of “bonus features”. In this case, it is better for “them” not to throw in a bunch of applications or an impressive sound card since you won’t be wanting that stuff taking up space, “good deal” or not
Basic sound system (speakers, mics, cables)
This can be a black hole of investment if not researched and determined first. Research will be the key on this; know the intended size of the Band or team or worship personnel make up so the number of channels can be seen pretty clearly and then add channels to that for upcoming growth, which I promise will come (probably just after the board is installed). Much of this is either going to a near-by music store that carries some sound gear and buying a portable system from them that you can box and load/unload weekly and store same way, or it is buying it through an integrator or contractor/consultant who will do the buying for you. Consequently, they can do the set up and strike the first time as well, to instruct your team how to do it properly without damaging any of the gear (I could write for a while on some of the “accidents” that happened to portable systems on their maiden voyages when power cords were plugged into non-power cord inputs and the like…). A “basic sound system” is a very generic term in and of itself and is generally defined first by the size of the budget and then by the size and needs of the team/personnel up front as well as the media playback anticipated and the instrument and vocal processing anticipated.
Any one of us can suggest a name brand and model as well as our personal opinions of Ford versus Chevy and Dodge when it comes to sound systems but what will always matter first will be the budget, then second to that will be the budget and then third will be how much you can spend, then lastly will be what you actually need. Figure the fourth thing out first, then go after the first three with the help of a pro (who hopefully has been through that process before and can quite possibly help those deciding on the budget understand the needs more clearly, if given opportunity to meet them.) if possible.
Basic “need to know’s” in no particular order:
Band size (number of expected mic and instrument inputs, expected monitor usage (hot spot, floor wedge or In ear), needs and number of monitor sends to the stage, will the person mixing the service be responsible for the monitor mixes as well or will an AVIOM or similar monitor matrix technology be used, amount of EQ control desired on the board itself, are there going to be other venues or destinations that the audio mix will need to be sent to (either currently or eventually) via Matrix, how many seats, size of the venue (sq. ft) including height of the room, acoustic properties of the venue itself (carpeted, mats, hardwood flooring, tarp flooring, reflective walls and ceiling, folding chairs with or without cushions), wireless needs (pastors to In Ears to instruments), storage of the equipment on site or in a secured trailer? Do not forget insurance for EACH AND EVRYTHING you have in that system. Keep an Excel spreadsheet of the original inventory from the time or purchase and then update it as equipment is added, repaired and lost or stolen. The best time to do this is upon delivery of the new gear the first time. Plan ahead and keep accurate records; insurance companies won’t mess around with “maybes” and “I think it was...I can’t remember”.
CD Player
I would suggest that this be fit into the Basic Sound System category, but include a CD burner as well as a CD player and also a Cassette player and a cassette recorder. Seems like a lot, but in the end, when so and so comes up to sing a tune to a track, they often have those on cassette, not CD. Also, many folks still want to have sermons on cassette for shut ins and elderly who have not embraced the digital age and likely won’t. CD burning is part of today’s service needs and allows immediate input into a computer for any audio editing and podcasting that might be considered, let alone having a digital archive of sermons and services (though this will tie into the grade and quality of the console and equipment you end up choosing. If this will be a priority at some point in the future, you must take that into consideration BEFORE you buy a mixing console that is incapable of producing that opportunity.
…fini
Peace-
Monday, February 05, 2007
Monday, February 5, 2007 addendum
It’s Monday evening (5:46 PM) and I haven’t needed my cane hardly at all, all day. How cool is that?
Also, I called the insurance carrier for the disability claim and he said that they have officially accepted the claim; no more wondering and waiting. I’ve been waiting, in my heart and spirit, for them to deny the claim and have been trying to plan a strategy to use when they did. I’m so thankful they have accepted the claim.
Huge.
Time for dinner preparations..
It’s 8:30 and time to close down.
Just before dinner, Joshy came running to the house from the back yard and due to the full cleaning this past weekend, there were no stickers on the patio door…and he nailed it at full speed. No glass breaking, praise God, but he clocked himself really good. Some ice on his head brought more tears than the hit did.
Anyway, he’s alright now and it’s time to close the day out.
More on the truck issues tomorrow…yes, there are more…sigh.
peace
Monday, February 5, 2007
Well, I'm still without my cane this morning, so far. However long this lasts is a blessing and I was quite serious when I stated simply that God owes me nothing. I don't walk around thinking that somehow I'm above all this pain and suffering that I experience. I’m not. No one is. Especially me.
God’s been good to me all my life. Look at my wife. Look at my children. Look at my family. Look at my years in music. Look at my years in my vocation as an audio engineer. Look at the accomplishments done through Him. Look at my friends. No, God doesn’t owe me anything. I’m not sure I could handle myself, or if anyone else could handle me, if I were to think that for some reason, God, is His Omniscience was indebted to me. It is ever-so the other way around. Again, look at all the noted categories I afore mentioned. I am indebted to Him instead.
Regardless of my disease, regardless of my fate, regardless of my finances, regardless of my pain, regardless of my cane, regardless of my medicine, regardless of Kaiser, regardless of UCSF, regardless of our money and lack of money. It’s my prayer and hope that I won’t be, nor feel like I am being tested in this realization of roles.
My hope and prayer is that all will come to pass as it favorably could with regards to the disability claim and with regards to the referral over to UCSF. I will do all I can, within my power to produce the outcome that I believe is correct and just for my family and me, but I know that it all belongs to Him, not me.
The leader who spoke yesterday said a number of things worthy of repeating, but one of those things was “The homeless beg from the outside in. We beg from the inside out.” I take from that, that those who live without beg for what they don’t have and what they want, that they know others have in the sense of physical worth, food and profit. We beg more from what we don’t have inside, regardless of the things we have outside, learning as we go that those material things are not enough to keep us from begging as well.
Galatians 6:3: 3If anyone thinks he is something when he is nothing, he deceives himself.
Isn’t that us? Isn’t that me? Don’t we often find ourselves there?
I do.
I think I get caught in that, often, and thus I think I’m due some kind of break, some kind of reprieve from what this time in life has to offer and deliver.
The speaker also said something I found pretty funny then realized I identified with it too…when speaking about Peter, the apostle, he said of Peter, “Peter is a ‘ready, fire, aim’ kind of guy…” it brought an initial chuckle from most but then those of us who identified with that description of Peter kind of took a second to register the identity and then continue listening.
The speaker also shared how he was guest speaker in his home town at a visiting church after he’d been on the road for some time lecturing and ministering across the nation, and while speaking one night in his home town, an older guy walked in, dressed in pretty dirty garb, “street clothes” would be an appropriate description, looking pretty dirty, disheveled and such, and as he walked down the aisle toward the front, a couple ushers came and escorted him out. The church had been having some issues with homeless folks walking in and disrupting the services and making scenes and such and since this church was hosting him, they wanted to avoid any unpleasantries if possible. The pastor sitting next to the guest apologized for the distraction and noticed the guest’s dumbfound expression and asked if he was alright. The guest (the same guy who was speaking to us yesterday morning) said to the pastor “I know that man.” The pastor kind of shocked said “you do?” and he said “Yes, I do. That was my dad.” He figured he must have come straight from work or someplace, I’m guessing. He said that his dad has not entered a church building since that time. The damage it caused was and is apparently irreparable. The sharing of that story brought silence to the room. Shock, unbelief, disapproval, conviction as well, I would imagine.
Hard story to have as history. Worse yet is to also have the infidelity as well. Through all of his personal garbage and errors that he brought before all of us and in his plea for us to forgive him. I couldn’t help but think inside myself, “but who are we that you should ask our forgiveness? If we were to walk up on stage, hold a mic to our lips and then share our sins with 2000 people, who in the room would be qualified to sit in judgment over any one of us?” Please don’t be so far off the mark as to think that I am condoning his infidelity or that I am excusing it or even placing a value on it over something else. In fact, I am NOT placing a value on it over ANYTHING else.
Unless I am mistaken, God does not count one sin higher or more vile than another. We do. I do. Probably, you do. It is known in the correctional facilities and prisons world-wide, that those who are imprisoned for crimes against children are not even forgiven or overlooked by those already imprisoned. Many have stated that the majority of those beaten and abused viciously behind bars by other inmates are those who have been incarcerated for crimes against children. Digression? Yes. Point? The point is that even those found guilty of sin in the judicial system, find guilt and place a value on that guilt within their own realm. We are nothing less than blessed that we are not judged by God according to the degree of the sin we commit, as we hold value and attribute such to, but that He looks in our hearts and goes no further. He doesn’t have to. That’s where it begins and He deals with it there.
I just looked out the music room window because movement caught my eye and there was a woman in her 30s to 40s, walking with a walker, her husband or counterpart, walking with her, helping her along. I’m sitting in here with my cane in my bedroom. There, but for the Grace of God, go I. Maybe I don’t have the literal meaning correct, but the inferred meaning, the one I understand and interpret, I have and realize. I’ve been there. Walking on the street with a walker. It’s likely in my future too. But thanks to God, it’s not here now. It’s a moment of appreciation, wrapped in words of that moment.
Okay, well, interesting blog this morning…prayers for continued healing, treatment and God’s blessing of finances for us. Many more, but those come to mind.
I’m off to change sheets on beds, and to see if I can get the alternator back in the truck.
Peace.
Sunday, February 04, 2007
Sunday Addendum
We went to Capital Christian Center for service this morning. Worship was pretty loud for all of us, but it was cool aside from that. Dennis Agaganian was there and sang two songs before the pastor spoke. After Dennis was the pastor for a few minutes then he welcomed a pastor who has been going through tough times, a friend of his. The guy was pretty dynamic and funny all the way to the end of his talk when he shared with all of us that he had had an affair and needed to ask the forgiveness of the congregation and then called his daughter up on stage and they both tearfully hugged and he then asked for anyone who needs prayer, healing or forgiveness to come forward and kneel, so Missy and I went forward and then Joshy came up too and we kneeled down in prayer and stayed there, kind of huddled together and prayed. Missy cried for while there, not sure why she was crying and Joshy was consoling her and me as best he could do, thinking it was necessary. So sweet.
The gent who had asked forgiveness came down and prayed with most folks, including me and the kids. CC was in the pew and said it was powerful to be there. She watched him walk through others to come to us and pray intensely as he did. Before we went back to our pew, two other folks came over and prayed with us and for us while we were there.
After service we came home and I noticed that I could walk better and shortly there after, I walked without my cane and have been walking without my cane now for a good tow hours or so. I played catch with the kids in the yard.
God owed me nothing but he relieved me of my pain for this afternoon anyway.
God is good regardless of me.
peace
Sunday, February 4, 2007
Yesterday was looking like a reasonable day; began with breakfast, taking a new medicine to help my digestion, minimal cane, and CC working in the yard.
Erin and Tyler Creasey came over and I gave them a guitar lesson which was fun to do. I got to see them for a while, talk a bit work on guitar some and then we watched a little G3 scien we had been playing guitar and I was hoping they’d dig watching the maniacs show off on their respective instruments. It was very cool to see them and hang out a little bit. Erin is considering weekly lessons at this point, which would be cool, for sure.
After Erin and Tyler took off, I went out and took the alternator out of the truck and Joshy and I went to Kragen’s to have it tested. Joshy and I carried in the box/crate with the alternators (I had brought the other alternators I had in the garage as well since they won’t work on the truck) and I was frustrated and disappointed that no one in Kragen’s, not a staffer or waiting customer, would help Joshy and me as we struggled to carry the heavy crate containing the alternators. Sucky state of culture and society on the West coast. Bet ya if we were on the East Coast, we’d have been helped before we even got in the store…
Anyway, as it turned out, the alternator tested fine; passed all tests, sooo…….the issue isn’t the alternator. The guy there suggested replacing the Regulator and I told him we had already replaced it before, but he said it’s the more likely bad part, so I bought another one and will look for it somewhere in the engine area and then replace it when I install the alternator. There was a crack in the casing of the alternator I brought back for testing, where one of the mounting screws goes in, likely from my tightening the bolt too tightly…so he replaced the unit for another new one and we went back home. While I was driving home I began to have some vicious cramps and feel light headed. I drove home safely and managed to get back in the house and even test my blood and potassium. Blood was 122 (perfectly fine) and my K+ was 4.2, which is lower for me and often brings some pain with it, but not pain like this. CC needed some help in the shed due to putting the kayaks back in and when I got out to her another round of cramps hit and I could barely stand. Missy helped me back into the house and the rest of the day/night was spent pretty much on the bed. CC read the medicine’s label for possible side effects; “possible cramping, light headedness, dizziness, etc”. Nice. I felt doomed. At least we knew what the major contributor was.
When I was up from the bathroom, the chills began as I opened the bathroom door. I’m so thankful CC was right there when they hit; she helped me get back into bed and had already turned on a heating pad for my stomach so I was able to “fall” on it on the bed. Muscles pulled me into a fetal position, as much as they could, and I remained that way until the spasms stopped. They did stop after I don’t know how long. I felt like someone beat the sh*t out of me, all body/midsection punches. That’s how I feel today as well. Yesterday and last night were hell. Again. Glad it’s over, or at least appears to be over.
We plan to go to CapChristian this morning and I’ll just be slow; no real option there.
Prayers for no more pain today and for muscles to mellow out and relax.
-peace
Friday, February 02, 2007
Friday, February 2, 2007 - seriously long entry...
I started this on Thursday but got caught up in the needs of the day and never returned to this document to finish it so now we are on to the next day, again…I’m sorry to have delayed. Note that this will be a lengthy blog entry, and I do mean lengthy with lots of feelings and perspectives so read at your own risk of being inspired to write a soap opera about my current life; I’m presenting a reasonable script for a “B” movie or Soap on channel 3 at around 1:30 PM, weekdays.
We’re talking about 3000 words…see ya-
Current:
I was short on Wednesday’s entry, so I’m going to continue on part of something from that day.
When I worked at MPPC, I had one volunteer in my 5 years there; Joe Sinnott, my lighting engineer. He helped shape and define for me what a volunteer is. He was as dedicated as any paid employee; he was invested in all aspects of our global responsibility to the end result of a well produced service and was willing to carve out time, coming in on non-production days during the week, in order to pre-set and determine preferred lighting levels and script timings in order to provide the very best he could offer. I could not have been more proud to sit along side him for most my entire 5 years there. Joe set the bar for my somewhat unrealistic expectations of what a volunteer should be.
Coming to Fair Oaks, as it turned out, I did have some paid crew but over the 3+ years I’ve been there, the crew has become volunteer-based instead of paid. Without getting into the politics of 2003/2004/2005, I have come to know and be blessed by some of the most impressive and exemplary volunteers. If I name one, I feel like I need to name all, and rightly so, because if I were to leave off a name inadvertently, I could end up hurting someone’s feelings, which is the furthest from my intentions. It’s safe to say that our team at FOP was cultivated by God in our hard work and while we were heavy on the paid weekend servants when I was hired, it was clear shortly after that God was moving our team towards a volunteer-based team. I struggled against that for members of the team to be found who had expertise in the tech fields, in hopes of being able to bring them on board for very little pay but set them in positions as team leaders to lead the volunteers on a weekly basis. What God did instead was raise up leaders from within the volunteers and they became pillars and foundational pieces of the team, solidly participating, assisting, helping whenever called upon to serve, and thus, redefining for me what a volunteer is. In the same sense, it brought me back to Joe from MPPC. I realized that God raised up a number of Joe-like volunteers in a place where I thought I’d never see another volunteer like him. God showed me that He can and will create what/who He wants, where He wants them and showed me how to be blessed by them and work with.
I know that there are new members to the team now since I’ve been out on disability, so their names won’t be on here, not because I don’t appreciate them and their help and efforts, but because I haven't worked with them and don’t know them yet, or at this point.
Who have so deeply blessed me and my work at FOP by participating in the Tech Team? The following, to the very best of my recollection, including some who are no longer active on the role, in last name alphabetical order:
Carl Almquist, Austin Bennett, Jason Brasel, Madoli (Cookie) Cook, Erin Creasey, Tyler Creasey, Craig Fetter, Rob Fisher, TK Heberlein, Geoff Hidden, John Marlin, Jana Mentink, Chris Patterson, Robert Patterson, Gordon Serviss, Darrell Soss, Ashley Steele, Leslie Steele, Scott Steele, Stephen Sutter
Out of the twenty names listed, only seven were/are in a position of employ. More than work associates, more than helpers, more than people fulfilling a role, these folks became members of my church family; most of them closer than causal “see you every Sunday morning” kind of friendships, which I believe is God’s gift to me. Some of the volunteer folks listed have become leaders on the team and have more than stepped up to the plate to keep the ship moving forward when I took ill. In particular, I think of Rob Fisher who, though he’s paid a salary, made himself available and crunched hard core when I went out unexpectedly. More than an inconvenience, my absence caused a series of challenges to surface and Rob led the way on showing “how it’s done” in covering for a leader who is unexpectedly absent. Much more to be written at another time. Thinking of Darrell Soss who’s been my close friend since my hire here and his “Get it done right” work ethic showed his attention to detail and his love for the craft and his love for doing God’s work in a way that he knew he could. Who has put up with grief and walked on through it, still with his head up and training his two little techs who would come in to help strike each Sunday after SML. Ask him sometime how long he’s been helping and serving on the Media Tech team…you be surprised at the double digit figure.
Also, Scott Steele and the Steele family who have gone up to bat, tirelessly it would appear ever since they began ministering to the FOP body by sharing their gifts, talents and spirit and leading within the team structure to help build a cohesive body of techs.
I think of Madoli and Carl who have both been such since pillars of support and care for me and for the crew as a whole. On campus and off, they have been so supportive, kind, loving, caring and giving of themselves and their time to be a support to me and my family as well as Rob and the team as a whole.
Erin and Tyler who have come in on their weekends off to make sure that the lighting in the Worship Center was working as well as it could; even re-aiming fixtures to help with that morning’s service needs, even though they weren’t scheduled to work that morning. My gosh. I could write more and more about each person listed and how they have impacted the team and how they have served but I’ll save that very long entry for another day. Suffice it to say that in my days as Director of the Media tech team, I have been incomparably blessed here at FOP by these folks listed above; pretty much welcomed into their families and lives and have had the opportunity to receive a blessing from God through my working along side them.
Where to go from there? Hmmmm…
Well, I awoke this morning around 5:00 and decided to go ahead and get up instead of going back to sleep, which I wasn’t convinced I’d be able to succeed in anyway.
I was thinking about my health, my doctors, my issues of this whole disability thing and have come up with a few things of note, anyway, to me they are a few things of note.
One of them is, in Kaiser, you are sent from one department to the next to be looked at, and assessed you’d think, in a unbiased manner, but it is clear that the doctors read your file before you come in so they can save some time in knowing what’s going on with you, which should also be a good and understandable thing. But in my case, I have a doc (Dr. Gibbs) who in December wrote in my chart that he doesn’t believe I really have HKPP and also that he is suspicious of the accuracy of and in my history/childhood. The effects of his input in my chart have pretty frustrating results. Any doctor I see now, looks at my chart, reads Gibb’s notes and assessment and then is suspicious that I’m more a psych case than truly suffering from something physical. I feel pretty strongly that I am battling a “system flaw” rather than some doctor who is out to get me, so to speak. Dr. Gibbs doesn’t know me from anyone, but his dictation includes some assumptions which are incorrect, some notions about HKPP which are incorrect and some assumed stats on HKPP which are incorrect as well. When you add those inaccuracies up and then add in his wording such as “it would be unusual for some diagnosis other than hyperaldosteronism…” and “The patient’s story of having a number of emergency room visits in which no one ever mentioned hypokalemia suggests that he didn’t have hypokalemic episodes when he was younger.” And ‘I would doubt that his potassium was never checked when he had come in…” and “it is also a little odd that he would come in with numbness in his hands and mouth and couldn’t see with these episodes.” He concedes in the same dictation that my “documented” episodes from this past year show my potassium in the low 3’s (anything under 3.5 is considered low potassium and 11 of 22 labs show low potassium from that timeframe with 19 of 22 being in the mid 3’s), however he then states that HKPP patients “generally” have levels under 3 when they are experiencing weakness. That statement is nearly entirely wrong and further insinuates/hints that I am possibly fabricating my issues. Since I’m complaining on topic, I’ll continue. He correctly states that I tested negative for the gene testing but includes in the same sentence “…which excludes that consideration for three-fourths of patients.” Are you sensing the origin of my concerns here and my anger over the global inaccuracies? I’ll mellow out in a bit…’If he were to have HKPP, then it would be odd that he is showing the blood pressure and aldosterone level changes of someone with hyperaldosteronism so we would have to be giving him multiple diagnoses.” Well, we wouldn’t want to have more than one thing wrong with him, now would we? I mean, that would mean we missed his diagnosis for several years now and never figured it out as a hereditary disease.
Ok, I’m back now…so, as you read the above quoted statements, can you see how a doctor, new to the search, would read those writings and assume, with some collegial support within the Kaiser camaraderie, that Gibbs was correct in his assessments and statements and essentially pick up where Gibbs left off? Gibbs clearly questioned my accuracy of historical facts in the least and in the most, he asserts that my “story” (his word, not mine) is a fabrication of some form. I have NO CLUE as to why someone I don’t know, and have no history with, and theoretically is to be biased towards the patient’s well being, would assume such a position as Dr. Gibbs has taken. Above the dictation and further odd and unethical (at least as far as I am concerned) is that Dr. Gibbs, or someone saying he is Dr. Gibbs, called Dr. Ralph at UCSF Med Center and told them that he is my neurologist and that I am not a candidate for the study on HKPP because I don’t have HKPP, but that he (Dr. Gibbs) does have a patient who would fit the criteria for the study. Even as I read this and type it, it is still amazing to me. And infuriating as well.
I’d like to add a few more facts regarding HKPP I’ve learned in the last few days:
- How Many HKPP Patients have had confirming second opinions?
- 3 out of 17 patients polled received a second opinion/confirming diagnosis
- What ages were Patients diagnosed:
- Out of 17 HKPP patients:
- 2 were diagnosed under the age of 10
- 10 were diagnosed from ages 11 through 20
- 2 were diagnosed from ages 21 through 30
- 1 was diagnosed from ages 31 through 40
- 3 were diagnosed from ages 41 through 50
- No patient I polled was diagnosed above 50
It has been asserted in Kaiser, that in order to be considered legitimately diagnosed with a disease or condition, that you must have a confirming second opinion. When I was told this, I was surprised but thought that I know little of medical things, so I’ll believe those within the field who have .MD following their name. Obviously, what I have learned is that a second opinion is NOT necessary and above that, just getting an actual DIAGNOSIS is nearly impossible within Kaiser, or at least in my case, it’s pretty damn difficult to KEEP one. Also, Dr. Gibbs had errantly suggested in our consult with him that HKPP patients are “normally” diagnosed in their childhood…um…look at the stats from the pole I took of random HKPP sufferers and you’ll see that the teenage years are the most common in this random group of pollsters and that the next age bracket with the most diagnoses is in their forties. Only two were diagnosed under the age of 10. Get your fricken facts straight before you condemn someone’s’ medical chart with your assumptions.
Do you suppose I’m still angry about this…? Yep.
Oh yea, I think I may have included this in another entry, but Dr. Gibbs had also suggested that Kaiser could induce another HKPP attack while I would be under observation with tubes and wires and then they would “bring you back out of it and get you balanced back out.” I leaned against death’s closed door in November and though it opened, I was saved from falling though. No one in their right mind would choose to go and knock on that door again, voluntarily if they are not already near it or carrying some kind of terminal sentence…at least not in my opinion. Hope that makes sense. In Dr. Gibb’s notes he doesn’t state that I crashed or anything like that; he states that do that test would *require* him going to the hospital, coming off the spirinolactone and then seeing how he does. As if it’s no big deal and that I’m opposed to the test unless it is absolutely necessary. As he writes it, he portrays me as simply unwilling and suspect. Amazing.
Okay, okay, I’ll move along. Just keep in mind that this is one of the only outlets I have for these thoughts and feelings and such and though I wouldn’t choose to share them with such a broad audience as this (and the web in general), it is freeing to get the mental baggage out of the head for a while and view it, realize it, understand it and then reassume or reinterpret it into my life. Most all of this is of no real interest to anyone anyway but me, and that’s perfectly fine. I do hope it is never used in some malicious way against me or in some demeaning way in viewing such a person with such struggles and situations, i.e. pathetic. I’m not caring much what others think of or about me now-a-days, but it does matter in the world of medicine and in my profession and professional life. If I determine that these writings could be detrimental to me in some fashion or from, then they’ll disappear from view. I do hope that does not become the case.
However, it may become the case now that I think about it, as we are considering the issues with Kaiser and such. I must do what is right. We shall see.
Jumping around
Ok, I’m not jumping around, but my thoughts are, so let’s proceed, shall we?
My aunt just called and suggested that we go to Sutter Med center and ask for and receive a copy of my labs and ER notes from my visit there in may, I believe, when I was taken via ambulance to Sutter because Kaiser was full and not accepting any more patients. She’s absolutely right in her suggestion and we need to make a call to them can get the process rolling as well.
My sister’s suggestion regarding the issues with my sight and eyes is pretty darn logical; the medicine I am taking could easily have that side effect, especially now with the number of different meds I’m taking.
I’m going to try reducing the pain meds to see if the pain is still there or not because it is very difficult to know if the meds you take globally mask it. I can obviously get back on them if I realize an increase in the pain, but I’d like to know if things have changed or not. I’d rather not take pain medicine at all.
CC’s mom is more or less, back to her same self and the stress of normal every day to day living has returned with the routine except that I am giving her her meds and not waiting for CC to come home to do it as well as some other care giving that makes life easier on CC so the full weight is not on her alone. This has to change, though. We cannot continue on like this. There will have to be conversations within the family to work out a solution that relieves us of the 3+ year long job of caring 24x7 for her mom. She doesn’t want to go anywhere, she doesn’t want to go be with anyone, she doesn’t want to do much of anything except stay in her room, watch her TV, have her coffees brought to her, have her newspapers brought to her weekly and be personally, physically cared for by CC. That’s it pretty much it in a sentence or two. It has to change.
I believe it is time to find another vehicle; my truck will cost far more to repair than it is worth on a good day. I need to replace the alternator and then put it up for sale for probably $1,200.00. It’ll run and behave but it need some fixes to bring it to *good* shape and we don’t and won’t have that kind of money to put on a vehicle. We are going to be looking for a suburban or sorts because we need a vehicle that can tow the boat and carry at least 5 passengers. I need to be able to get in and out of it easily which excludes small and medium sized cars that I would have to step down into.
*sigh*
Much going on.
Lastly, we are going to go ahead and pursue the appointment with Dr. Ralph with or without Kaiser’s referral, so it will cost us $400.00 out of our pockets, but at least we can begin to move forward in this whirlpool and maybe even, eventually, make it to the side of the pool and get out of it. God willing we will, but we have to keep going whether we succeed or not.
Peace
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