Monday, July 30, 2007

Monday, July 30, 2007

Brief now; Another attack this morning following my workout. Actually, it began while I was working out but due to an office situation, no one was with me when it started, The gals in the front helped me walk out to my Aunt's van and she drove me home.
The rest of the day is more of a blur with pain, spasms and numbness weaved throughout. No ER trip this time either.

We are heading out to look at some rental properties...Limited options now.

Friday, July 27, 2007

Friday, July 27, 2007

Chronicle of Wednesday and Thursday (July 25-26)
Wednesday we drove to San Jose to pick up CC’s niece and take her and our two to a place called The Jungle which is vaguely similar to Chuck E Cheese only 100x better. Anyway, we met Angel (CC’s niece by her oldest sister Kimmy) while there from 11:30 AM to 5:30 PM, early on in our 6 hour stay, I ate a piece of pepperoni pizza and was immediately struck by profuse sweating and nausea and overwhelming tiredness/fatigue. Because of the noise level at these kid playhouses (like Chuck E Cheese and The Jungle and Bamboola, etc) I try to bring ear plugs so I can lessen the noise level and this trip was no different. I put my ear plugs in and succumbed to my fatigue with about a 3 hour+ nap and over-all weakness that fallowed me the rest of the day.
We left there and went to Red Robin where we ate sparingly and I had chicken pieces and a few fries. Cramps followed through the early evening and we ultimately made it home without incident that evening.
Thursday, however, we slept in for a little while and then got up and started our days in “normal” fashion, relatively speaking when just around noonish, while I was reading an email, I was overcome by weakness, fatigue and a sense of lack of control (emotionally and physically) and I made my way to our bed by using the walls to stabilize me and steady me as I moved down the hall.
CC came in a short time after and I was in spasms and sweating but icy cold. She gave me a dose of liquid K+ and my muscle relaxers as well as pain meds but besides the K+, the rest are all pill from and I just had to wait for them to take effect which seemed like it took forever. I gave up somewhere in the process and said I didn’t care if she took me to ER or not but she stayed with me and monitored me until my body settled down eventually. This one didn’t scare the kids as much as the times before…I guess they’ve gotten used to seeing me nearly completely incapacitated…not that that is a good thing necessarily, but in this case at least they weren’t scared that I was going to die like a couple times before.
No discernable numbness while I was aware this time, though it may have happened during the previous night’s attempt at sleep. I don’t know.

Today I awoke to feeling like I had been beaten severely with a bat or board; everything hurt, even the bottoms of my feet which were cramping and spasming distinctly this time. Today was a definite cane day and tomorrow will likely be as well.

Until later-

another attack thismorning. I feel

another attack thismorning.
I feel beaten with a board.
CC kept me home, brought me back around.
Hard night and day coming

Tuesday, July 24, 2007

Tuesday, July 24, 2007

So, it’s been a little while.

Oregon:
We went to Camp Sherman, just outside of Sisters Oregon (20 minutes out of Bend) for a week of spending time with my family. My sister and her family and my parents went up on Friday and we went up Saturday and stayed until the following Saturday morning and then drove back home. Long ride home. Annie spent the time at my brother in laws in Shingle Springs and one of our neighbors watched our home and cat for us while we were away.
Highlights of the trip? We loved hanging out with family and especially having some concentrated time with my niece and nephew. Sterling, my sister’s oldest son was unable to go and we really missed him much. all of you. We spent time Shooting the .22 rifle a couple of days at a quarry where everyone (except my mom who didn’t go to the quarry with us)was a real blast and it appeared that everyone enjoyed the time shooting. We also went to a couple of lakes and tried fishing for a morning as well with no luck, however we DID see 2 bald eagles on that fishing trip as they were fishing too. That was one of the most majestic things I can recall having witnessed. I caught some of that on video and if I can figure out how to get it up on Youtube, I’ll link it in the blog for those who aren’t easily bored by family videos.
Erik being bashful and shy, of course

This is one of the lakes (at over 6,500 feet) where we kicked back for a while and CP, Kirsten and Erik all mountain biked back down to town. I'm uncertain of the number of miles they rode, but I do know they had a good time (when they remained on their bikes, that is...) Here's a pic of Joshy enjoying the lake

CP and Missy took on a Lego version of a Jet airliner while Joshy kept guard with his (then) new flintlock cap gun. The view is from the back door of the cabin rear porch, facing the Metolious River which is less than 50 feet from the edge of the back porch of the cabin we were staying in. Nice? Yeah, you could say that. Here is the view from the quarry where we went shooting a couple times. The view was breath taking even when it was showing signs of storming. I love the rain, so the clouds were a very welcomed sight. Here are Kirsten and Missy. Beauty runs in the family girls, no doubt.

Erik was making use of anything stationary to jump off of, on to, from, to, you name it, Erik went after it fearlessly, no doubt. I'm not certain, but I think E may have landed a little "differently" than he had planned. Notice the blond kid in the white Tshirt wanting to be like his older cousin?

-------

Reality hit back when we came home. We came back to some very, very hard news that one of our neighbors, Jerry Lemke (the guy/trucker from across the street with the diesel pick up who would bring home a semi-truck load of snow each winter/spring for the kids to play with in his driveway) died of cardiac arrest the night we left for Oregon. Dot, his wife, chose not to call us with the news fearing it would mess with our time away; she was completely correct, it would have been very hard to hear, as it was when she came over night before last to let us know personally. We went to see her yesterday afternoon and sat with her for an hour or so while she shared. I’ve been an emotional wreck over it. I considered him to be a good and loyal friend. He was only 52. Hard times to return to…harder than we imagined they could be.

CC let Annie out at 4:00 AM this morning (while she was getting ready to go to work) and Annie apparently surprised another skunk but this time only took the shot to the right side of her face somehow. I got up and we moved her crate outside and did decent damage control of the smell and then went back to bed. CC’s back and shoulders were hurting so bad that she had no choice but to call in sick to work. After sleeping in a little bit this morning, it was up and cleaning time for Annie’s crate, Annie and her blankets again. Most of the smell is gone now, but it was a very rude awakening; a smell unlike ANY other, period.

A cousin from Florida is coming in to the Bay Area to see the family there and we hope to go down there to see her and her husband and son and perhaps they may come up this way as well during their visit. I think they plan to do the San Francisco tourist-thing and sight see as much as feasible. She blessed us incredibly earlier this year and it will be even more of a blessing to see her in person. We haven’t seen each other in a number of years now…10 years I think.

The hair is gone now…I’m comfortably back to shaved. Definitely feels better for me.

Please continue to be praying for us. The emotional roller coaster does not seem to have a “stop” feature on it and we have more HUGE decisions coming up regarding our house and our future and we cannot consider everything with having His hand in EVERYTHING we do, though the emotions cloud my vision and make it really hard to see His hand at work. That’s about as honest as I can be at this point.

Health:

Each day for several months now, I sweat through between one and three shirts or complete outfits with no end in sight. When I say that I sweat through them, I mean I litterally soak the clothing to the point that it looks similar to me having been in a sprinkler and my clothing is soaked with absorbing the sweat. I wake up each morning to the sheets being saturated as well. You would think I ran a marathon.

Daily I deal with exhaustion that simply stops me in my tracks and I have to sit down or lie down. Our last trip to San Francisco proved necessary to have the wheel chair that CC packed "just in case". I cannot make it through long days of walking or physical transit.

Stress triggers episodes of exhaustion and fatigue and I feel poorly and sick.

We have changed our diet and I have no doubt that it is the main reason that I have not had to be back in the hospital now since February, though I should have gone in twice in May, but we fought my primary care physician to keep me in his office. As a result, he now triage's me in the waiting room to "head that possibility off at the pass".

Paralysis has been kept to a real minimum thanks to close monitoring of medicines and diet and an eagle-eyed wife who has saved me more than a few times now.

I want to be well and not deal with this stuff anymore. Same as everyone else who suffers from this thing.

Kaiser has no doctor who specializes in HKPP so it is not cost effective to allow me to keep the diagnosis THEY gave me back in August. For me to keep the diagnosis, they would have to send me wherever a medical center treats this disease and pay for it, so they have done all they can to remove the given diagnosis, even as far as actually calling the neurologist at UCSF, prior to my visit, to "suggest" in Kaiser's opinion that I do not have the specific disease. What do you know? The UCSF Neurologist who took the call from Kaiser Walnut Creek says I don't have HKPP but he, like Kaiser, has no idea what I have. All I have now is the August 2006 documentation from my first Kaiser neurologist that I do, in fact, have HKPP, proven by my family history and a electromuscular test he had me undergo which came back positive for myopathy. As long as Kaiser doesn't allow me to keep the diagnosis, they are not going to be out of pocket for my treatment, so it is in their financial "best interests" to keep me undiagnosed and treat me in the ER than to follow out a treatment plan which includes HKPP.

Okay, that’s it for now.

Sunday, July 22, 2007

Sunday, July 22, 2007

We made it back, safe and sound from our family trip to Oregon with my parents and my sister's family.

I'll write more about last week, but right now, I'm emotionally nailed by the news we got today from our neighbors across the street that Jerry, the husband, died last Saturday night from a heart attack. He died in transit in an ambulance. It's difficult to know what else to say or even feel.

Pray from Dot, his wife.

We need prayers too.

peace

We've been having a good

We've been having a good time all together up here with my parents, my sister and family, though I cannot escape my memory

We are on our way

We are on our way to pick up some .22 shells so we can go shoot some plastic targets up in the Oregon mountains.

We are enjoying our time,

We are enjoying our time, one day at a time though we dont have all the comforts of home.
The river is 50' away...

Friday, July 13, 2007 Evening Brief

Friday, July 13, 2007

Just an FYI; For the next week the posts will be occasional and possibly just short, 160 character entries from my cell phone.

peace

Pics from June and July

A little game of "Keep Away" with Annie...using my hand as the toy to catch. Wanna play?

Joshua on his cousin Erik's electric chopper while we were in San Carlos visiting in June

This pic is from a Tech Appreciation Dinner that Rob put together. Not everyone was able to attend, but those who were in attendance are greatly loved as are those who weren't able to make it.
My sis (of many, many years) Kari and her husband John came and visited us for an evening and morning and I cannot begin to express how blessed I was by their visit and time with them. They live in Colorado and we so seldom ever get to see one another; this was a real treat for me and us as a family. Breakfast at Annie's in Orangevale.

This is a shot from when Scott, Kyle and Madison came to visit and we took them to Negro Bar (yes, that's it's actual name) where there are a bunch of rocks for climbing and jumping. Take a closer look and you'll spot Joshua, Missy and Madison up on the rocks.

We took Scott and his family to San Francisco and did the "tourist" thing that I wrote of in an earlier blog. The day ended up with me in a wheel chair, but that allowed us to remain a bit longer in the City and to see a bit more than we would have. Here are some more SFO pics including a Cable Car ride.

Sunday, July 08, 2007 pt. 2

Sunday, July 08, 2007

Back from errands and such earlier. It’s now 6:40 PM and I had to lay down for a rest for a couple hours after we got home. Another aspect of this whole medical thing is, and I guess I’ve addressed it before, is that I simply don’t have the energy to handle a full day of activity. Very frustrating and morally defeating.

A few days ago, with the crucial help of a good buddy of mine from the Bay Area, Brian Kunz (he was my “Number One” while I worked at MPPC) who came up to visit this past week, I put together another MySpace address. Brian’s help was crucial because he showed me how to post music to the site. My music writing partner for several years and one of my very best friends and brother for many years, Scott Rose and I wrote several tunes in the many years we were writing and performing together and we recorded four songs while CC and I lived on Elm Street in San Carlos and these four songs were kinda known among us as the Elm Street recordings (at least that’s how I recalled them). There are 4 songs on the site. The site is http://www.myspace.com/scottnwade and there’s nothing else there but those tunes so far. I checked with Scott (after the fact, though) and he felt cool with posting the tunes. It would have been better to check with him FIRST, but I got head strong and wanted to accomplish it…sound familiar anyone? Anyway, if you’re curious, go to http://www.myspace.com/scottnwade and you can check out the 4 tunes. Scott played bass on each tune and sang background vocal on each tune as well as well as ghost lead vocal on a couple which stayed on the recording, He and I wrote the music to each of the tunes as well. I think we both programmed the drums as well, sitting together at Elm Street. I wrote the lyrics and sang lead on the tunes and played lead and rhythm guitars as well. My two favorite songs are “Space Mountain” and “Beauty of the Flame”. The latter was written during the conclusion of a sermon at King’s Way Church while Pastor Ron Rezendes was preaching about the burning of Rome and Nero’s wickedness. It’s as close to actually “feeling” inspired and directed to write a set of lyrics as I have ever been.

I can safely say that I have not worked with as gifted a player and writer as Scott. He lives in North Dakota with his wife Kristy and son Adam. We both have been catching up with each other as time permits, but I realized that without him, I don’t have mush of any inspiration to play…just the way it is. A best friend and a brother and an inspiring bassist, unlike any other I have heard or worked with. I’ve worked with some incredible bassists (Jared and Kev come to mind) but my history with Scott is several years (back to ’84 or ’85) and we moved to LA together to pursue music, learned some spiritual realities together and wrote some of my most memorable musical favorite songs together over the span of close to 22 years, if you think about it. His family website is http://www.ourrosegarden.com/ where you can see pics of his family and especially his son Adam.

Well, there’ll be more later but for now, I’m feeling poorly and just want to lay down.
Scott, when you read this, know that I miss you bro.

7:20 PM now...

peace

Sunday, July 8, 2007

Sunday, July 8, 2007

Heading out to get errands done before Missy returns from camping today.
Huge family decisions on the table (still) that we have to embrace and tackle before much more time passes.
Mostly all good days for the past week; huge praise to God. I have had to nap on a number of days simply out of being completely wiped out and unable to keep going.
We've had several friends visiting over the past few weeks and that has changed my choice of time spending from me and the computer to me and friends and family, so I have been absent from blogging and though I have no regrets for my time spent, I do regret not having kept up here any better than I have.

We did use the wheel chair while in SFO which though was an ego splinter for me, was the only way I could have stayed with the family. My life is changing before my eyes and I simply have to embrace the changes while continuing to pursue answers and an ultimate solution to my overall weakness and pain.

We are going to be heading out in a moment, so I'll get back to this shortly, once we return if our schedule permits.
Time to go-
peace

Reality check for me was

Reality check for me was walking out to the van this morning and seeing that CC had loaded the wheelchair into the van.

On our way to the

On our way to the City (SFO) for the day, with my buddy Scotty and his wife and son.
Looking forward to a mellow day.