Update & Pics from July and August

Sunday, August 10, 2008

I did have an attack yesterday afternoon; muscle spasms began in my waist and abdomen and got progressively worse while I was standing in the kitchen slicing an apple for a snack. Most uncomfortable to say the least.

Today, Sunday, I've been having flutters in my arms and shoulders almost non-stop though they have not increased. I took my meds which included K+ but they have not settled down at all. I still have nausea and don't feel like I'm on my game at all. *Bleh*

*sigh*

We missed church this morning due to sleeping in. I'm bummed not to get to church, but am glad that CC was able to get some well needed rest and extra sleep that she has been missing for so long.

My mom heads back to the Bay Area today and my niece Kirsten is heading up to us for a week long visit. We are all excited to see her and have time with her.

Below are some of the pictures I promised a few entries ago, so scroll down for the pics.

peace



Annie likes to sleep on the couch when it is just her and me home, but it amazes me that she moves the cushions with her paws so that she can lay on them and rest her head in an elevated manner.
~~~~~~~~~~~~~
Laura came to visit for a long weekend and was a true and wonderful blessing to all of us.






This is what I wrote while in church a few weeks back. I wrote what I was seeing in my head as the pastor was teaching and I tried to capture it and write it out as I saw it.

Saturday Morning start

Saturday, August 9, 2008

Bernie Mac died today...a sad loss for the comedic industry. He died from complications of pneumonia. We should be praying for his family.

Olympics began yesterday evening and from what I saw, it looked pretty amazing for the opening ceremony. I've recorded the ceremony so that I can watch all of it; I came in during the country's processions.

I slept most of the day yesterday and then sleeping last night was somewhat tough going, in that, I woke up often. My right shoulder hurts, which I've been told is to be expected. I have three puncture wounds on my right side which are healing up as they should. I guess he missed twice but got it on the 3rd try.

Today will be a Mommy and Missy day while I stay home with my mom and Josh goes to a birthday party. We were trying for a birthday slumber party for Missy this evening, but most of the girls she invited couldn't come, so we are looking to another date.

It's 8:35 am and time for me to go get some breakfast.
~w

Crawling on the rim of pain...

Today is Friday, August 8, 2008.

This entry will be brief. I am at home, and I am using the NaturallySpeaking software in order to make this blog entry. I understand that yesterday's procedure was successful and since I am back at home it's clear that we felt there was no danger for me to come home instead of stay in the hospital overnight. Yesterday is merely a complete blur for me. The more I concentrate and try to remember, the less I seem to be able to get clear in my head. I do have distinct recollection of the incredible pain when the syringe went in to the liver. I didn't feel it go into the skin, but I did feel the sensation of the needle going in to the liver itself. It's not even a pain that I can describe. I remember freezing up in the room during the biopsy, but I don't remember very much after that. I don't remember coming home. I don't remember coming in the house, and don't remember going up stairs or getting in bed.
The pain on my right side from the three puncture holes is most impressive. I'm not sure how today is going to go. I'm feeling as poorly as I ever have the job now is to wait until CC comes home from work so that she can fill in the many blanks that I have in my head right now.
My hope was to have no recollection of the procedure yesterday and I am disappointed today to have distinct recollection of the pain; that sucks. Being vertical as well as walking and sitting up right are very uncomfortable, if not painful, so I'm going to sign off for now. I'm sure things will get better as time moves forward and as long as I don't do anything stupid to open up one of the three holes that they made before they have time to completely heal and close. Incredible pain.

More later

Thursday Morning Early

Thursday, August 7, 2008

CC woke me up at 5:30 am this morning (it's now 6:19 am) so I could get going without rushing and such. I ate 4 or 5 pieces of low sodium turkey breast with a little mustard and drank a bottle of water, both permitted by the doc, according to his email from a day ago.
CC has packed snacks and waters to have in case they are needed while we are there.
My mom is coming up and will be covering me tonight in case I stay for the night in the hospital. If I can make it through the procedure this morning and through the recovery time without an attack then it is more likely that we will just come home instead of opting to stay, but my gut is that it might be wiser to stay to be on the safe side, of course "safe" is a very relative term considering where I will be. How truly unfortunate that we cannot trust our health care system to be exactly just that, a health CARE system. I don't think I'm scared, but I do feel a little apprehensive and cautious just because I've not gone through this procedure while knowing of my condition/disease and due to the HKPP reality, this kind of procedure is no longer "typical" or simply normal due to my known triggers of saline (which they have said they won't use), cold rooms/cold temperatures, stress, anxiety, pain, being startled, anesthesias and rest after physical exertion and more.

Is now 6:40 am and we are to leave shortly. I'm bringing my cell phone in case I do stay so I can write a brief update via my cell phone to the blog.

peace

Wednesday evening

Wednesday, August 6, 2008

Today has been a pretty poor day.
I have been down the whole day feeling like I've been in a fight.
Maybe I'll get some relief and sleep tonight.
*sigh*

~w

Wednesday Mid-Day

Wednesday, August 6, 2008

I'm feeling pretty poorly today/now.
Things were alright until partway through pottery class while I was on the wheel. I think now that the stress of manipulating the wheel and the strength needed for holding and molding the clay cost me more than I had to spend. I called CC from the table and asked her to come (she had gone to a local park to chat with Becky) and then walked away form the table and just as I realized that I was going to go down, CC was right there, caught me and helped me to the car.
We got home and they got me to the chair and then upstairs by midnight. I remember very little.
I feel like hell today and even typing this is taking much concentration and effort.
I'm going to take more meds and lie down again once I make it upstairs.

Tomorrow is liver biopsy. Please be praying for me, my wife, the doctors, the medical staff on the floor I'll be on and for the ER department team I may end up in as well.
That's it, I'm done

56 Minutes In to Tuesday Morning

Tuesday, August 5, 2008

It seems that I cannot go to bed at a reasonable hour any more. *sigh*

I am investigating a video editor already on my computer to see if I can be creative again...exhaustion drains the creativity from the body which in turn brings depression which robs the soul. Currently, I'm poor. That's my thought anyway.

Another attack today which was more mild than others, but left me as wrecked and sore as one fo the nasty ones would, though I was able to walk without anyone helping me, about 3 hours or so afterwards. It was triggered while CC and I were uninstalling my truck's stereo. I began to sweat like crazy (it was pretty hot too) and I think the over-all heat of the day became intensified while I was standing in the sun. CC kept me from falling and helped me walk into the house hwere I continued to sweat for a while. We did a half dose of liquid K+ (potassium) and it seemed to help my body level itself while the imbalance tried to rage within. I lost that battle, but it was not as brutal as it could have been. I distinctly remember feeling as though I was locked within bars, inside my head, unable to free myself or control my body and emotions. Talking was difficult and hard for me to think and say words correctly, almost like stuttering. It was very hard work just to say anything and I was angry with it. Sometimes I just get fed up with being screwed up. This was one of those times.

Referral?? Got a call from a Kaiser department that I was referred to...back in April! How stupid is that?! Their system is broken if it takes them 4 months to actually get a referral through. Started my morning a bit darker than I would have preferred.

This Thursday is my liver biopsy at Morse Ave. Kaiser. CC received an email today form the doctor responsible and we feel pretty confident that I will be watched more carefully than the average patient that day. They will also allow CC to be with me immediately following the procedure, during recovery and they will also admit me for the night and next day for observation in case I have an attack before, during or afterwards, so I feel much better about my care for this specific event.

Yesterday was fairly low key...my memory is not behaving right now...oh well.
Monday, Missy and I waited until CC came home from work and then we went to the library, just Missy and me; her on her bike and me in my chair. We both really enjoyed the time together and were able to talk while we road as well as stopping by Carl's Jr. for a lunch for her (I had my Aquafina...yum *sigh*).

I learned that the library is exactly 2 miles from our house and that my chair was running at a top speed of about 2.5 mph and the battery was nearly full when we left and was flashing its last red bar before being dead, when we got back home. I'm troubled that the chair ran so slowly and that my dual batteries only lasted two hours of total operation. That can't be right. I have to figure out who can take a look at it and do some diagnostics on it...add that to the list...

Next entry, I'm planning to give my thoughts on the movies I rented over the weekend; too tired now to do it

New mask for my CPAP machine arrived today; it will be good to replace the old one. I know, no one cares but me.

Please be praying for Chris and Sheila and their two kids as they are all vacationing and traveling even to Europe! Pray as your heart leads.

I heard from two separate friends from out of my past (one emailed today and the other emailed back in the beginning of July on my MySpace page) and I'm looking forward to the email exchanges I hope will follow after I reply tomorrow...? I hope tomorrow...

A best friend of CC's who goes way back to her teen years is coming down here to visit and help CC this week being that we have alot going on this week and CC needs rest and pain relief, so the visit should be a blessing to her and us.

Kirsten is coming up next week!!!! We are very excited to have her visit and hang with us; we love her to pieces for sure! I heard tell that she ight even be DRIVING herself up here...not certain I'm ready for that...

It's now nearly 1:35am. I'll stop.
g'night.
peace

more tomorrow...chest pain/shallow breathing/headache/weak now.
took meds already, hoping they kick in.
sorry to be bief

Friday Recap

Saturday, August 02, 2008
12:49 am

Yesterday, Friday, went off without a formed attack, that is, there were a couple times during the day when I became too weak to stand or move during which I sweated heavily. Fortunately, those times did not run their usual course and I dealt with them and some minor muscle flutters with resting and consciously trying to relax.

CC took me to Blockbuster Videos this evening to pick out a number for me to watch; I had asked if I might arrange a trip there sometime and she got me there the next day...pretty cool. I rented:
"The Mummy Returns" (just finished watching it; has been a favorite fro some time now as is "The Mummy")
"Beowulf"
"Alan Quartermain and the Temple of the Skulls"
"Fantastic 4: The Silver Surfer"
"The Bourne Ultimatum"
"100 Million BC"
...and lastly, "The Condemned" which features SCSA aka: Stone Cold Steve Austin from WWE fame.
I've seen both Fantastic 4 movies, both Mummy movies (and looking forward to the new one), the first two Jason Bourne movies and am looking forward to the one I've rented. I watched "The Condemned" and was delightfully surprised at the quality of acting and depth of some of the characters including SCSA's character. I liked it. Not a young kids movie though...
I hooked up the DVD player to our tv in our bedroom so now I can watch from up here instead of only downstairs. Yay.

Quick shout: Carl and Madoli, I have been trying to reach you for a couple weeks via email but have not gotten through. Please shoot me an email when you get a chance or buzz me on my cell so we can catch up and hook up.
I miss you guys-

Please be praying for CC's jaw and neck pain as well as an ear pain that is progressing.


I'm tired now. It's 1:45 am...AGAIN!!! Arg. Sleep is ebbing away from me daily...I must turn this around.

Thursday Re-Cap

Friday, August 01, 2008

Once again, it's late (12:35 am) and I'm still up...but not for long this time.
Anyway, no attack yesterday (Thursday) and PT went fine.
CC is still having a lot of jaw pain and subsequently neck/shoulders pain. Your prayers for her healing of this unrelenting pain are coveted.

Sorry not to have gotten any pictures up yet, out of site-out of mind, I guess...perhaps tomorrow?

Oh yes, I DID find a one-of-a-kind cassette tape recording of one of the bands that I was in. It is a 4 or 6 track recording that we made using my old employer's office space and our keyboardist's garage (at that time). The band? SBG. It has 4 songs on it but it was a pre-final mix tape which means that my guitar leads are not on it and some of the background vocals are missing as well. I'm very hopeful to eventually find my original copy of the final mixdown, but I have already gone through over 500 of my cassettes and have had no luck. Finding this tape has given me a renewed sense of hope though...Once I figure it out, I may try and put them up via something like YouTube (sp?) or the like. It would be cool to share some of my musical history with those who'd care to hear it. If there is a free upload/access software or the like of YouTube, please shoot me an email with its name and/or address on the web. Would YouTube work for me even though I don't have video to go with it? I'm clearly, pitifully behind the technological times...

Here's to hoping that Friday will be free of any attacks, as will my sleep tonight as well. It's 12:56 am.

peace.