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?

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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.