It's been a Wednesday...

Well it's been a pretty fair day, all things considered. I am feeling the best today that I have felt since my visit to Hotel Kaiser. I have more energy and thanks to the methadone, I have less noticeable pain for most of the day. I won’t over-do it, but at least it’s back to being tempting...
Tomorrow has quite a bit of work to accomplish on campus so it will be a busy day I’m sure.

Last night I woke up around midnight in the process of recognizing an attack of chills coming on and Bam! They hit full swing for I don't know how long. Brutal effects with the complete tensing and spasm through-out my body, but most painful in the back of my thighs where they began to cramp up and release over and over. All I can do is shake uncontrollably (kind of like the people who exaggerate the cold on TV and their teeth chatter and they shake like their freezing) and breathe through them until my body temp gets back to normal or my body simply gives in and they stop from my shear exhaustion. I woke up seriously sore this morning but I knew what it was from and at least they came and went. My dad suffers from them sometimes but I don’t know if it is independently hereditary or if it is an extension of the Periodic Paralysis affects on my muscles. Whichever it is, it sucks.

I got a call from Kaiser regarding them purchasing a “Cardy Meter” (a meter for measuring potassium) and they will not get it for us. We are on our own, but we figured that was coming due to it not being FDA approved yet and the fact that HKPP is not researched by most ANYONE in Kaiser. Once we pursue a potassium meter then I can get a much more accurate reading of my normal K+ level and can know what drop in numbers constitutes an attack.

Speaking of potassium, CC went by the pharmacy and got a small spill proof plastic bottle to hold a reviving dose of liquid potassium for me to carry with me. How dramatic is that? Sheesh...It’s difficult to right about all this stuff without me reading it through and seeing drama written all through it. Yuck. Just know that the writings on here are NOT intended for dramatic purposes but matter of fact accounting and venting and such. In many ways, hopefully this will serve as a positive tool in my process of getting a handle on this disease and prove helpful.
Histroy recorded.

We have a CT scan scheduled for a couple weeks from now to see if there is anything visible on the adrenal glands that doesn’t belong. Oh yeah, I also forgot to note that we did a blood draw a few weeks back that was sent off, through Kaiser’s Genetics Department, to Harvard Medical to see if they can identify the specific gene that mutated to cause the HKPP. They said that about 70% have been identified but not to get our hopes up on it. The benefit of knowing the specific strand or gene is that for the ones they’ve identified, they have figured out some medicine which helps to prevent the attacks. We are doing everything we can from this end and any help from the medical field will be warmly received.

On the very cool front, my dad came up this morning to help us with our back yard which needs some attention. Between him and CC, they cut down half of the large hedge in our back yard. CC and I have a vision for the back yard and very little chance to realize it with schedules and life the way it is, so dad’s coming up kicked it into forward motion and much progress was made today.

Completely OFF topic and slightly random; it was pretty interesting seeing an old friend today who is checking out a ministry position at FOP. Once I know it’s okay, and if I remember, I’ll note him on the blog, but I don’t want him compromised. Ooh...the mystery.

I also had the opportunity to spend a block of time with our Pastor to Youth, Josh Flood. We went to Fry’s in Sac to check out some computer flat panels and some other stuff. I had such a great time talking with him and listening as well. He’s got such a wonderful heart, refreshing vision and perspective. He’s got my complete respect. I consider him a good friend even though we don’t have much opportunity to hang out. He’s quite the video guy too. He’s got a very good eye.

So I’m writing this from my bed with my laptop while listening to Siouxie and the Banshees “Peek-a-boo” and watching Joshy who’s sitting on the bed with me playing his plastic guitar to the songs. How cool is that? He enjoys quiet bands like...Whitesnake, Siouxie et all, Van Halen, Sammy Hagar, TNT...you know...mellow bands.
He’s conservative like me.

He asked me tonight if I would video tape him singing and playing guitar to the COPS theme song, while he’s dressed as his version of a cop which includes a Batman T-Shirt. I dig him.

So many folks have emailed about the blog, it has been very, very cool to hear from each of you. It was far more than I thought would come out of making this available to you and is such a blessing to hear from you all. Truly. Your love and support is such a blessing, you have no idea to what an extent. I think I will also combine the meal diary with this so I am not keep to records at the same time, so you will see B, L & D at the end of the entry for my records.

Well it’s time for closing down. We shall see what tomorrow holds...
Peace all-
w

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B=3 eggs
L=2 grilled chicken breasts with whole grain rice
D=grilled steak, salad with thousand.