Gettin' On Up Under My Skin... :-o/

Friday, May 30, 2008

Yesterday (Wednesday), I woke up in the same position that I had gone to sleep in, according to CC. Once I had opened my eyes, I attempted to set myself up, and found that my left shoulder, and bicep and tricep, felt as if I have broken it/them; I could not move my shoulder. I could not move my elbow. I was able to move my fingers, but I was not able to move my wrist around. The pain was excruciating, and though CC had to go to work, she fed me some yogurt before she left, and she helped to try and get me propped up so I could be sitting up in the bed. The process took a little while to be able to pull off.
For the most part, I stayed in bed all day yesterday, only getting up to go to the bathroom. My aunt came over that morning, after being called by CC while CC was on her way to work. My aunt stayed with me all day until CC came home. I can't imagine how I would have made it through the day without her help. As the day progressed, my hips and my thighs began to hurt as much as my shoulder was hurting. I was able to walk with the assistance of Missy or CC, or if I walked with the cane, I had to use the cane holding it in my right hand and walking very, very slowly; one step at a time. It's got to feeling like my body had just betrayed me and my options were minimal.

My regular home care nurse, K.aye, has been out on medical leave herself, so I have had two new nurses for the last two visits, and the nurse that came yesterday was fantastic. Her name is Debbie, and she is very familiar with HKPP, having studied it and worked with patients suffering from it on the East Coast, where she is from. As soon as she came into the room where I was, I explained to her what was going on with my arm and shoulder, and she nodded her head in acknowledgment and understanding of what I was saying. She then shared that this is part of the HKPP process, dealing with the muscle damage dealing with muscle inflammation and just dealing with the pain, for that matter. She shared with us that it is very important that I stay on oxygen, especially in the timeframe of taking the pain pills, because the lower lobes in my lungs have begun to not perform properly due to HKPP and that I'm at increased risk of dealing with advanced cases of bronchitis and pneumonia; typical issues associated with HKPP. Towards the end of the nurse's visit, I asked her if all the different things that she's read in my chart and the things that I have explained to her, add up in her opinion to a diagnosis of HKPP, and she said 1000%.

This morning, Thursday, I woke up in less pain than I did yesterday, but I was unable to lift my left arm and move it around without dealing with a substantial amount of pain. There is no question that the pain medicine helped to give me back some mobility, in that, I was able to work through the pain, because it didn't hurt as much thanks to the pain meds, but at least my hips were a little less painful than they were yesterday and I was able to become a bit more mobile as the day wore on. I was pretty tired today, not having gone to sleep last night until 2 a.m.(I guess what that means is, I went to sleep at 2 a.m. this morning...). I ended up taking a six or seven hour nap yesterday to somewhat make up for the lack of sleep. I slept a little bit today as well kind of dozing off, catnaps and the like.
It is hard for me to believe, and to accept that my body is just falling apart before my eyes and before the eyes of my family and there is very little that I can do to stop it, at this point. Missy has gotten to the point now where she is verbalizing more and more that she curses the disease I have and that it makes her angry and frustrated to see me hurt and to know that I am deprived the many things that only two years ago I had and I could do. One of her most favorite things was me driving them to school in the morning in my truck. At this point in time, I can't imagine driving any real distance at all due to the reality that the attacks hit so quickly and so fast now, that I don't have time to respond, I just react, and all within a matter of a few seconds, I am incapacitated and at the mercy of my company or surroundings.

As a matter of fact, if I didn't have the software that allows me to dictate to the computer, then I wouldn't be able to get these thoughts into the blog at all, because I can't bring my arms up to type with any consistency or price.
Josh has been away on a two day overnight with the school and he comes back tomorrow (Friday) and I have been missing him greatly. I suppose it is on to Friday now, being that it is 12:22 a.m..

Onward...

Pre-Memorial ramblings well into the night...

Sunday, May 26, 2008.

It's about 1:21 a.m. in the morning on Monday morning, memorial day, and I had a long nap this past afternoon, which is kind of messed up my sleeping schedule for tonight. For the most part, today was particularly fun because I was able to go to church, or better said, we as a family went to church this morning to Capital Christian and we all sat together in the pew and enjoyed church altogether as a family; something that is becoming more regular than it has ever been in my life. As for this morning, we all got up in a timely manner and were able to get cleaned up and dressed and ready to go in time for their 11:15 Contemporary Service. CC dropped us off at the front doors so that we could walk in slowly and comfortably and by the time she parked in a handicapped space closest to the church, she was able to catch up to us even before we had reached our normal entrance door into the sanctuary. I had packed a PB and J. sandwich and some carrots and a couple bottles of water for this morning's outing in hopes that that would be able to hold me until lunchtime and head off any metabolic challenges that may arise, which it did. The pastor who preached this morning spoke on dreams and dreaming; this is the ongoing topic for the better part of May, and they have had a variety of teachers teach on the subject. Josh was sleepy and restless, but the rest of us were engaged by the pastor's message.

After church and the slow walk to the van, we loaded in and we headed back towards home. Wisely, CC had brought a tank of oxygen to have in the car for the travel and I was very appreciative of having access to that on the ride home. We came home after lunch out (a VERY rare occasion), and I was able to slowly walk into the house, even more slowly than I had walked previously, and headed for my bed upstairs to take what was supposed to be a 30 minute nap.

Five hours later, I awoke to the smell of CC cooking dinner for the kids downstairs. I took to pondering how it was that I slept for five hours for the next 15 minutes or so and then determined that if I was to continue to ponder, I was likely to go back to sleep for who knows how long, so I got up and went downstairs to see what all had transpired while I had been asleep. Wonderfully and miraculously, CC found several of my medical documents from eight plus years ago, where we still lived in the Bay Area and within those documents were notes from the labs that had been run indicating consistency in a number of elevated labs in question now. We hope that this will prove helpful once they are copied and forwarded on to my primary care physician as well as my current G.I. Dr..

I should note that CC’s main goal for this three day weekend is to go through all the boxes in the garage and restore our garage in to a 1&1/2 car garage available for parking the van within, like it had been when we first moved in here. Needless to say, this endeavor will turn up many, many documents, pictures, toys and all kinds of things that we have been missing since 2003 when we moved up into Fair Oaks and had to put most of our belongings into boxes six months after we arrived, in order to accommodate the living change of CC’s mom coming to live with us from Saratoga. The bottom line, as well as the end result, was that many things that we wanted access to no longer were accessible and soon became lost in a labyrinth of cardboard boxes and gaff tape.

So, that covers today or better said, that covers yesterday, which was Sunday. As for Saturday, CC, and I both worked in the garage. Being that CC wakes up way early, she had done quite a bit of work by the time I had gotten in there in the morning. I started taking care of small projects that I felt I could begin and end with, which was helpful in that I didn't find myself getting frustrated for not being able to finish a big project due to health factors coming into play.

CC is incredible. When she gets a drive to get something done, few things can get in her way and keep her from accomplishing her goal. Unfortunately, I DO happen to be one of those things that can slow her down, but due to our knowledge of how to treat and take care of my symptoms and condition, for the most part, she is able to get me stabilized and then the kids help monitor my status, while life is able to continue on in the house instead of everything coming to a complete stop, because daddy is sick, yet again. At one point around lunch time, I got caught up in taping down the ramp that my father built going from the garage into the house and I wanted to tape it down to the floor and the rugs so that the wheelchair travels more smoothly from one location to the other location. I figured I wouldn't be down very long doing what I was doing and I was hoping that I would not pay a price for it... but I was wrong. CC and Josh were in the garage at the time that I stood up after my final stretch of taping, and very shortly thereafter I was aware that I was sitting in a chair and then from there Missy appeared and she and CC helped to carry me into the living room and onto the couch for what would be about a four hour nap, complete with muscle spasms, liquid K+ and nasty, nasty pain. I get angry with myself for doing things that I know, in retrospect I should not do, but at the time, it seems so easy to do and of little risk. I think that CC gets more angry with me than I get with me, primarily because we go over, and over, and over the topics of what I should and should not do and the things that I have to just let go of and let other people do. But that is hard; much harder than anyone could imagine to do, PLUS it is on a daily basis, not a weekly basis, not a monthly basis. Normally after a person has been leaning down or down on their hands and knees for a period of time working on something, when they stand up or stand up quickly, they get what we would always call "head rush" and then they would have to stand still for a few moments to gain their bearings about their internal system levels out. That used to be me as well, but now I don't walk away from a head rush. I am fortunate if I can remain standing, I am unfortunate, if I cannot. Apparently, I knocked some things over yesterday in my attempts to try to get my balance and be able to hold myself up; I couldn't see, and I couldn't stay standing. Once again, CC caught me (I think) and Josh brought a chair over and I dropped into the chair placed directly behind me. One must keep in mind that I weigh + /- 250 pounds, which is a lot for CC to have to hold as dead weight.

After the lengthy nap, CC and the kids brought in the videos that they had rented the day before, and we chose to watch a video called “August Rush”. Apparently, this movie won several awards, and after watching it, I could see why. I would strongly recommend anyone picking it up and enjoying it when time and opportunity present themselves simultaneously. Essentially, it is about a boy who is growing up in a orphanage, and he dreams of finding his parents, and he believes that he can hear them in the “music”, and that the music will help to lead him to them and bring them together. The music is mostly in his head, though, as the movie moves along and he is given the opportunity to try different instruments, he masters them with the speed of a prodigy. He runs away from the orphanage and gets hooked up with Robin Williams, who portrays a character most believable. Robin’s character is that of a hustler, who uses gifted kids and play instruments in several different locations in New York and the money that they collect they bring back to him and then he gives them a slight portion of the money while the rest goes to him. I won't tell you too much more past that, except that the movie does have a happy ending though it runs a little bit long. It is a good family movie and quite enjoyable.

Following watching the movie, the kids prepared the downstairs couch for them to sleep on and CC and I retreated up the stairs and called it an evening, going to sleep shortly thereafter.

Completely new topic:

Most regrettably, and it breaks my heart to do it, I am going to have to put my truck up for sale on Craig's list. The "Red Hot Chili Pepper" must find a new home and a new owner being that it is costing us monthly to simply keep it here at the house for me to simply and painfully look at and not drive. When God restores my health, and I am once again privileged to drive, I will again look for a truck very similar to the Pepper.

*sigh*

E-mail me or call me if you have any interests in it, or if you know of anyone that would be interested in it.

I expect that the next entry will include more regarding what is coming up medically for me, what is on the horizon and my attempts and communication, requesting prayer cover, prayer support and prayer encouragement for me, my wife, my daughter and my son, as well as my family in the Bay Area and my Aunt and Uncle up here in Sacto Area, as well as my friends who have become family: “My Team” from FOPC and who will always be “My Boys” from MPPC. Not to forget my Chinese Uncle/Mentor; a divine friend and brother. This very brief list does not merely reflect a huge list that is within my heart. If you know me, then, you know you are there.

It is now 2:56 a.m. and I am done typing (or better said, speaking/dictating)

Peace-

More of the life of...me

It is Wednesday May 21, 2008.

This entry is going to be done via software called Dragon Naturally Speaking. It's the standard version and its version 9. A very, very good friend sent it to me to give a try and work with, so it seems most logical to try it out while I am writing the entry. Seriously COOL! (Look out folks, I'm probably gonna get wordy on ya) :-)

Instead of recounting from the last week or so to know I'm in a start with today and then kind of work my way backwards as I can remember them recall what happened, so let's get started...

When I woke up this morning, I wasn't feeling as well as I have the past few days when I have woken up in the morning and I thought that to be kind of strange. I was hoping that I would feel better than that I would be able to get some things accomplished, but that was not to be today. I was able to be up in time to see Missy and Josh off to school; that always makes me feel much better and helps me to begin my day in good spirits. After seeing them off to school. I had some breakfast, which was primarily Georgianna eggs that CC had made a few days back. Georgianna eggs is an egg casserole with some different cheeses and in eggs and some milk, and it is wonderful, though often made with chilies and peppers for those that like the spicy food. I, however, am boring and terribly Caucasian and often simply choose plain and Georgianna eggs, which I think taste wonderful and are a good source of protein in the morning. Surely after breakfast I was feeling tired, so I figured that I would head up into my office and look at some e-mails and see what I could get done by just sitting instead of walking around in doing things. While I was working on some e-mails, I noticed that I began to sweat like crazy and became very, very tired. I headed to bed and lay down for a little while. Kind of napping on and off for a bit and then felt better once I got up and I went back to the computer and finished out the e-mails that I wanted to work on.

CC called from work on her break and we touched bases like we normally do when she is at work. This time, she shared with me that during the night, I had suffered an attack of spasms. I didn't wake up from them. She woke up because of them and she monitored me until they stopped. Once they stopped, I apparently realized that I did not have my CPAP machine on. So I reached up, put the mask on, turned on the machine and went back to sleep; this was all around 3:15 AM this morning. So I guess I know why I feel as yucky as I do (or did). She shared with me that that's not an uncommon occurrence at night. I don't have any log for nighttime attacks after I've gone to sleep, although I have suspected that I was having attacks during the night. There have been a few times that I have woken up paralyzed, unable to move, not able to speak and breathing very shallow. I have also woken up in complete fits of spasms that only let up once I warm up and or I have become completely exhausted. The days that follow those types of attacks during the night are hellish and painful days to get through. Today was kind of one of those days.

My mom came up on Monday and has been here helping out with most of the issues that I deal with; helping me to get snacks, fruit, groceries and, from time to time, helping me get dressed and driving me from one location to another location. Most often, my aunt Judy comes over and helps with all of these things that in the times that she is busy and unavailable. My mom looks to see if she can come up and help in her place. Their help and intervention in my needs, makes it so that CC can focus on the kids and their needs directly, and be less overwhelmed.

Around midday today, my mom left to go and get a couple errands done that we had talked about getting accomplished, and it was during her errand to run that another attack began while I was down in the kitchen cutting up some apple slices for a snack; my legs began to vibrate and my shoulders and my hands began to spasm as well and my eyes were having a very difficult time being able to stay focused on the apple and the knife while I was trying to cut it into small pieces. Fortunately I didn't cut myself. However, I did stop what I was doing, took the food that I had prepared and very slowly made it up the stairs and into my bedroom. Once there, I saw my cell phone, grabbed it, and pushed the one button that dials my mom's phone number and let her know what was going on. She finished out where she was and came straight back and helped get me situated on my bed, and brought me the different medicine to help shut it down. Roughly 3 hours later, I wake up and CC is making dinner. Life has moved along, and all the while, my mom has come in and checked on me every so often to see how I was doing and to make sure I was still asleep.

The attack today, and the attack last night are undoubtedly due to drops in my potassium levels. This afternoon's attack, reminded me of several of the attacks that I had had at FOPC when I was working there alone in my office. Those attacks, like this one, spooked me. Unfortunately, we need to add up the attack from last night, the attack from today, the attack yesterday evening, the attack last Sunday, the attack last Saturday, the few attacks that happened during that preceding week and the attack that I noted in the blog entry before this one, in which I was coming out of the movie theater when things started going south for me. All of these attacks, pretty much all of these attacks, are rooted in my potassium levels, and the drop in my potassium levels, and possibly there could be some relationship with my liver and all of this as well, but I'm putting my money on the potassium. Last Friday's attack as well as the following Saturday and Sunday attacks were a combination of paralysis as well as muscle spasms and in each of those attacks I was unable to speak and unable to open my mouth due to my jaw being locked shut and the muscles being clamped down so that I couldn't open it. I learned a new definition of scared; when you can think what you want to say, but your body will refuse to allow you to say it to the very one you love the very most. It scared me bad. They all did.

We do have a doctor who was helping us with my liver and trying to figure out why my liver enzyme numbers are all whacked out and high. People that have high liver numbers tend to have a definite problem with their liver, and I have had high liver numbers since the middle of the 1990s, when we found out just before my back surgery, that there was an issue with me having high liver counts. The doctors at that time, and since that time, have simply given it the generic term “You have a fatty liver" which means that they don't know what's wrong with the liver and they're not going to do any more investigation into it to figure it out, other than some simple labs. Well, at this point in my life, simple labs simply will not do. We must know what the heck is going on inside my body so that we can take steps to correct it. The next planned steps that we hope to pursue, include having a liver biopsy done in the next few weeks, which should provide conclusive evidence for the doctors to research, to find and clarify what the issues are with the liver. They told me that during the biopsy I won't be completely out, however, I won't care due to the medicines don't give me in advance. Let's all pray for really good medicines, okay?

***I'm going to stop at this point and just let you know that because I am using the new software and because I am somewhat tired at this point, there may be word mistakes or punctuation mistakes. And I may not catch them, so bear with me and do your best to figure out what you think I'm actually trying to say, because that's what I'm going to do… :-).

A good friend from my past sent me an e-mail just a couple days ago, his name is Hollis Tollefson (SP?)… I never had a problem spilling his first name :-) (forgive me, Hollis) anyway, Hollis and I used to work at Menlo Park Pres during MPPC’s most significant worship years, in my opinion, the years where money wasn't a problem, people thought out of the box, and I felt that we had one of the very best worship leader/worship teams that was leading worship during the time of 1998 through 2003. Our director was second to none, and the staff that he hired were all exceptional in what they were expected to do. I count myself blessed to have been a part of that time frame, to have been part of that family, to have had such an incredible opportunity to learn worship presentation/worship participation/worship leadership/organ and choir integration with full band arrangements with the recognized “best in the area” players every week.

Well, I digress. What I was starting out to say was, that Hollis and I were part of the same staff at MPPC. Hollis was brought on to work as an associate with Bob March in our IT department, while I was the Chief Audio Director the Media Technologies Department. Hollis wrote to me that he was able to track me down via Google, and from there, sent me an e-mail. Hollis, if you're reading this, please know that I hope to get back to you within a couple of days or so.

Also, Carl, if you read this, please know that I love and miss you guys and I'm sorry, I have not been in better touch. Hopefully, reading the above will help you to know what's been gone on over the past few weeks, and know that my lack of communication is not intended to hurt or frustrate. I hope that makes sense. Some days, I simply just don't want to communicate. I just want the pain, the exhaustion to fear in the symptoms to just go away and talking on the phone during those times is hard for me. I guess that's my excuse. I hope you understand.

Those of you who read this, who live in the area, please know that it would be wonderful to see you if your schedule allows. Please give CC a call on her cell phone or on our house phone so that we can arrange a date and time to hook up.

Until then-

Peace.

Today's Glimps...

Tuesday, May 13, 2008

Last Friday afternoon, after picking up Missy and Josh from school, we took them to see “Horton Hears a Who” as a surprise and kind of “Welcome to the Weekend” gesture. I brought some sliced turkey rolled with Lace Swiss cheese (pretty low sodium content) but still succumbed to the temptation of a large pretzel with no salt on it (later finding out it was 350mg of sodium in the pretzel itself).

After the movie, I found it profoundly harder to stand and become mobile to exit the theater, being the last one out to boot.

CC went ahead to bring the van close to where we were going to reach the sidewalk and as I walked with my cane, I found it necessary to use the hand railing on the right side of me as well. Upon reaching the van, I loaded myself in and we began our ride home. My legs began to ache more and more finally reaching the point where I couldn’t move them voluntarily and I began to focus hard on not succumbing to the pain and positional discomfort. CC realized I was in mid-battle and instructed my daughter how to get water and my pills into me to begin the “counter-measures” so to speak. At this point I couldn’t open my eyes and see or use my hands and arms.

When we got home, CC rolled out our wheel chair and she somehow maneuvered me into it with Missy’s help and then rolled me into the house and onto the couch where I stayed for a few hours. When it got to where I could see again, she and the kids helped me up the flight of stairs to our bedroom and got me into bed.

It had been a number of months since I had an attack of paralysis; most of my recent attacks of late have been low K+ and high Phosphorus which present themselves in uncontrollable spasms, severe brain fog/disorientation and inability to control communication and complete exhaustion, often leaving me with vicious muscular pain for a few days following, the kind of pain that is not touched by non-IV medicine, unfortunately.

Yesterday, Monday, I was down stairs in the morning when the intense sweating began and my ability to think clearly diminished. I ate some steak to boost my protein and called my aunt who lives near-bye to come and help. Made my way up the stairs and got onto bed and waited for her. The rest is a blur.

Today has been better, so far…at least I’m typing…