Tuesday, January 16, 2007

Tuesday, January 16, 2007

This will cover the last couple day’s events again since I have not managed to discipline myself to writing each night or day. It’s mostly just a matter of priority and discipline. So here’s what’s up:

Orlando:
A couple days ago I read an email on the HKPP list serve about a conference on PP (Periodic Paralysis) in October of this year in Orlando, Florida. The organizers have set it up at the Rosen Centre Hotel in downtown Orlando, a 5 star hotel (their suites, of which 3 are presidential, are all larger than our house…uh, yeah.) with over 1,300 rooms and centrally located in the middle of downtown. The conference is free to members of the PP association (which I am a member) and the conference is featuring guest speakers Dr. Frank Lehmann-Horn and Dr. Karin Jurkat-Rott, authorities on periodic paralysis. Incredibly, the room rate which is a normal $249.00 base rate has been reduced for the conference attendees and their families to $89.00 per night, thanks to the owner of the hotel. It was his decision and graciousness. We’ve made the preliminary reservations to go and have reserved a room for us and a room for my parents as well and will work on affording the trip between now and then. Some of my dad’s family are in Florida as well as a number of other East Coast states so we plan to make this a small family reunion of sorts and stay there for 10 days or so. The hotel management has granted us the discounted rate from October 23 through November 3 with the conference falling on the 27th and 28th of October. We have something to be excited about now for the end of the year; something to look forward to and plan towards. Outside of affording the room stay, I need to rent (for the first time in my life) an electric scooter for my stay there, which will run between $250 and $350 for the time that we’d be there, approximately. I’d never considered, in my most contemplative of nights, that I would need to rent some mode of assisted travel until all of this set in this past year.
Anyway, we are excited about this opportunity to go and learn more, meet the people I’ve been emailing with who suffer from the same thing as me and some in far worse shape than me. A number of folks on the list have immediate family suffering from the same thing and some of them have children with the same paralysis issues as well. I should be thanking God on an hourly basis that my children have not exhibited any symptoms to date and I should NEVER take my health for granted again.

Walking:
We went for a walk/ride on Sunday afternoon to the river. I walked for a little ways then retreated back to the van while the kids and CC went for a ride from the bridge in old town Fair Oaks up to the Hatchery on Hazel. They got in a seriously good ride and were understandably wiped when they returned. I was able to walk about ¼ mile before paying a price and managed to get back to the van without much more issue. I would have had a problem had I walked much further than I did as well as it being silly cold at the time.
While CC and the kids rode up to the hatchery, they saw numerous fishermen in the river and in rowboats in the river; trolling, casting and fly fishing as well. I’m expecting that they were looking for steelhead at this point. I saw one guy in the river in his waders, down near where I was and CC told me of the others up-river, so we packed up the bikes and drove up near the hatchery where we could see the folks fishing. It was a cool day’s outing for the weekend and was time well spent. I took some pics while we were out but can’t find the camera at the moment to post them here. I’ll find them later and get them up for viewing.

I’m walking better today then even yesterday, so I’m hoping that we are on the way back from someplace a few nights ago. I’m not sure if I wrote on my thoughts about this latest pain, but I think I had some form of an attack during the night, due to how badly I felt Saturday morning. I’m learning to not only identify the triggers of the attacks, but I am also learning the characteristics of the pain during the attacks and afterwards and how I feel following the battle.
I just came back from having lunch with Pastor Josh and it was so refreshing, as it always is, to have some time with him. He’s always humble while honest and forthright and the combination of those two qualities are unfortunately NOT as commonplace as we’d like them to be, even within the church itself. He manifests a Paul-like approach which I SO respect and wish I could reflect, even in some simple minor way. Our lunch together was very refreshing for me and calming in some ways as well since being with Josh requires no facades and no masks. You can just be “you” and not feel additionally convicted that your inadequacies are somehow glaringly obvious because he just cares for who you are and how you are instead of who you are acting like or trying hard to be. Hope that makes sense.
I know Josh “gets it” and he “get’s” me as well. If you read this bro, carry on my friend.

Movie: http://www.thetheoryofeverything.com/
Back when I was working at MPPC, Brian Mann was the organist and arranger for all things musical there, essentially and was the “go to” guy for scoring and creating parts within most all musical accompaniments. He’ll likely want to kick my butt for not writing his job responsibilities out correctly, but he’s in Texas now and I’m still in California :-o) …Anyway, his skills as an organist got him the gig but his skills as a musician opened some impressive doors for him as well and thanks to his pursuing the organist job at MPPC, I was blessed with a new friend and colleague with talent that was infectious and impressive. While he was there, a friend of his asked him to score a movie that this friend was creating and so Brian agreed to the task and in doing so gave a number of us who worked with him, the “once in a lifetime” (for most of us) opportunity to be involved in that process. I was blessed to have the opportunity to record the bulk of the audio tracks which were ultimately mixed down in the studio, I think by Robert Iriartborde, I believe (Robert was and is my successor at MPPC) anyway. So Brian sent out an email this afternoon noting that the movie is still alive in some other circles and there are some new trailers for it and they can be viewed at http://www.thetheoryofeverything.com/ How cool is that? I haven’t heard from him in quite some time so it was cool to get included in the email distro, but cooler than that was to check out the movie trailer again and remember the work we did together. The movie was well done and cool.

Jared Milos is on his way up here to spend some hours with me and hang out! Seriously cool. I haven’t been able to see hi other than pictures from his musical endeavors, in a few years now…could be considered several years now, unfortunately. Anyway, he’s a bassist among bassists and a good friend who I’m looking forward to seeing for a visit. Hopefully we’ll get to play around some musically before he splits in the morning to head back down to the Bay Area. If I know what’s good for me, I’ll re-string my guitars right now…we’ll see.

Medical:
I’m scheduled for an appointment with the Rheumatology department this Thursday in the morning, because of my ongoing pain. Though I’m not confident that my pain will be manageable via this particular department, I need to go and rule out those departments which will help in sifting out the department we’re ultimately looking for. We are pretty certain that what I’m dealing with is muscular-based pain due to the issues with the fluctuating potassium. I take a medicine, Spironolactone, which serves two primary purposes: the medicine causes my body to retain potassium longer than it would “normally” and it regulates my adrenal gland’s secretion of aldosterone which controls my body’s sodium and potassium.

Well, I’m mid-way through a thought but want to get this posted, so I’ll continue tomorrow perhaps…
-peace