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…

Up Periscope...

Tuesday, April 29, 2008

It’s hard to figure out where to begin tonight…I guess I need to begin with just apologizing for not having updated this for so long. Each day brings it’s own “excuses” for not simply sitting down and typing out what’s in my mind, but the bottom line is that I haven’t and didn’t.

Missy is in Oregon till tomorrow on a school field trip. That is incredibly hard for me to have her that far away. I’m very uncomfortable with it, but I know it is just the beginning of her stepping out and learning knew things about where she’s gone to and about herself. It’s just that she’s daddy’s girl and he’s having a hard time with her absence.

On the health front:
Where to start that doesn’t already look like familiar ground?
Wanna guess what’s currently the list of diagnosis’s:

- HKPP

- Hyperaldosteronism

- Hyperphosphatemia

- Hypoglycemia

- Sleep Apnea (considered severe including 00:97 second gaps between measured breaths in their Sleep Lab)

- Hepatitis B (?)

- Chronic Back pain

- Diabetes Type II

- Progressive Myopathy (front and back arms {biceps and triceps, etc} and legs, quads and thighs

- Myoclonic Jerks

Last week CC and I went to Kaiser’s South location Pain Clinic and most of the way through I suffered another spasm attack in front of the doc and her staff and we were coded (coded means that while you are in a hospital facility and you begin suffering, the person in charge calls for an ambulance and EMTs). I’ve had this happen to me half a dozen times or more now and each time it happens, the doctor in charge sees their view of “the elephant” and thinks they know what I’m dealing with, as long as it is not HKPP, it would seem.

Because of the negative experiences and treatment we have had in the various ER’s, CC tries her best to keep us out of them, but sometimes they are out of her control and we have to go as a result of other circumstances

Bottom line is that I seem to get hit by one kind of attack or another at most every three days, of not daily, and these attacks nearly always don’t end up in the ER but happen in a restaurant, a car while traveling, in a meeting, during church service, in a doc office, while having the labs drawn, or even after eating a meal turning out to be high in salt or high in sugar. CC and Missy will carry me out (as inconspicuously as possible as to not panic the natives or said establishment) to the van’s front seat (if the kids are with us) and we head straight home to the couch or bed followed by more medicine to prevent the attack’s progressive nature. If left alone with no meds, I likely pass out from the pain and/or the physical exhaustion. The medicine intercedes where my body cannot.

I cannot walk medium to long distances anymore; I am almost always in a wheel chair that we have here at home. I walk with a cane now every day due to regular weakness in my right leg/side. I’m going to have to accept the probability of figuring out how to pursue one of those 3 wheel scooters so I can gain some mobility back. We’ll see.

We have a home care nurse who comes once a week to take labs and get a general assessment of how I’m doing and help us progress beyond the Kaiser wall. She’s a wonderful lady who knows her stuff and more than anything wants to see me well again. She is and has been a blessing.

My mom has been up here now nearly a week helping me get along and being invaluable in her care of me and us. I think she’s heading home tomorrow where she will simply pick up running from where she left last week.

Speaking of invaluable

My Aunt Judy has shown incredible attention and has gone far, far beyond the normal boards to met my and my family’s needs during these past 2 years in particular. My Uncle Norm has done the same while also volunteering weekly at a variety of places where he has become well needed and appreciated. I cannot imagine adequately showing them how much I appreciate their love for me and my family. When I end up in an ER, 9 of 10 times my Aunt (and sometimes my Uncle too) is there when I arrive or very shortly thereafter to help CC any way she can.

On the “So what do they think now?” front:

Barely more than they did before, with the exception that a GI doc is trying to prove or disprove me suffering from Hepatitis B…that’s a new one. A few more labs and he plans to make his educated opinion known. There is a possibility that he would do a liver biopsy, which I am in great favor of because then they can actually work with the liver itself instead of lab tests which is little more than a bloody True or False game with my blood. Average lab draw is between 8 and 14 tubes per visit. Average number of needle pokes to locate veins is 2 to 3 and as high as 4. I’m what the labs call “ a tough stick”; my skin is thick which frustrates a simple needle intrusion and the veins in both my arms are scarred and blown, meaning they cannot yield a fruitful draw and then they have to stick in the back of my hand or at the knuckle of my index fingers where a vein crosses over from the finger to the wrist.

I don’t look forward to the lab draw with the one exception of a lab tech named Dwayne who has never failed me (1 stick typical, 2 sticks rare. I consider him a friend even though I don’t know his last name. He’s got tattoos all over; arms, neck (front and back) and looks like he’s been there and back and we hit it off the first time I met him. He remembered my name the next time I saw him, probably a month later, even before getting the lab paperwork.

I wish I could stop all my meds and just clean out my system, but the fear of that following unknown is more than I can deal with, not the least of which would be the crap I would get from the nurses on the hospital floor who would be taking care of me as a result.

Each time I have a spasm attack or a paralysis attack (those have been more at night than in the day time), the muscles affected by the attack are permanently damaged by the potassium. This is called “myopathy” which I tested positive for back in 2006. Life right now is surreal to me. I’m feeling like I’m waiting for God to catch me up in His huge hand and tell me that the test is over and though I probably got a barely passing grade, that I’ve passed this part of my life and my family’s life and He will heal me back to independence and breadwinning with a renewed vigor for spreading His news through the skills He’s given me.

…Just not yet. Just not yet.

Indebted…

There are so many of you that I have not followed up on replying to emails and voice mails; Jared, David, Steve, Chris, Rob, Aunts and Uncles and cousins back East, My bro Harry, my brother and Encourager Art, my example Karl, my blood Kev, my true, true friend Neil- my brother for life as well as other brothers mentioned…the list goes on and the weight of the mere letters causes me to sink lower in my chair.

Please forgive, those mention and those not.

Bob and Carolynn…we remain speechless with undeserving hearts, broken in gratitude…

==========================================

Certainly there is much, much more for me to pour out from thought but not tonight.

A question though, before signing off: who knows of a software that would allow me to speak into a computer mic and have those spoken words converted into text in a Word Doc or text file or so? This ability would prove very helpful given my situation. If any of you can point me in the right direction, that would be a blessing.

And now, for this evening’s understatement: I miss you; hearing from you, seeing you, texting with you, even visiting with you. When you can, email me when you’ve a minute or two.

Well, I’ve thought, phrased, rephrased, corrected and typed now for two hours.

fíne

Sorry...Friday, April 11, 2008

Friday, April 11, 2008

Life is still challenging I know I'm better off than so many people who are suffering from the varieties of impairments from car accidents, drive-bys and all of the varieties of cancers, but as I ride out my daily pity parties, that perspective is difficult to maintain.

Attacks are every other day, between minor to major, but I have not been to the ER in the past 2 weeks, which is a good thing, regardless of my mood.

For those friends who live near by, it would be cool to see you if your schedule will permit. Most of my days are spent recovering, lying down or being seated.

CC needs your prayers for strength and endurance being that everything is up to her.

More later.
w

New week

Tuesday, March 25, 2008

Not much energy to write with.
I was released from Kaiser this past Saturday after a 6 day stay and am no closer to finding an answer than before I went in for chest pain and shortness of breath.
I'll write more later, but for now I am depleted of energy and clear thoughts.
If you have CC's cell, you can update with her directly or can use emails to contact her about what's going on.
Most outings are in a wheel chair, short trips with a cane anyway.
Hard to watch this happen before my eyes and before the eyes of my family. Hospital stays become scary for all involved.
Visitors are always welcome; check in with CC first if possible.
I love my friends and am thankful consciously.

Excuses, Excuses: Thursday, March 13, 2008

Thursday, March 13, 2008:

I guess this is what I meant by “more later” from my last entry.
February and March f this year (so far) have been medical roller coasters which in their high points leave me feeling astonished at how close to “normal” I feel. At their low points find me in an ER, on a gurney with an IV in one arm, my wife holding my other and me wondering how they’ll stop the pain this time and will they listen to my wife?!

Yesterday was a low point, having been at a Kaiser facility in Lincoln for a couple Ultra Sounds to be done to further rule out concerns when another episode took over and being that this Lincoln facility is a very new facility, I imagine my situation was the most action they’ve seen in some time. My aunt was with me at the time while CC was at work until she got the call from my Aunt or the nurses and then she left for the ER in Roseville. Prior to my being loaded into the ambulance, my Aunt wrote with a sharpie on both of my arms “NO SALINE”. Indeed, this episode from start to finish involved no saline, praise God.

During the ambulance ride I had a hard time breathing with the oxygen mask on; I wanted more air than it would provide giving me a profound sense of suffocation, a sense that I would not like to experience again.

A few days before that we were at my doctor’s office for a follow up and catch up on my status when I became profoundly sweaty and tired. At an earlier appointment, I had asked him to remove a couple “skin tags” (kind of wart-like growths) and he said to remove them was a little painful in that liquid nitrogen is used and prayed on the tags which can cause a burning sensation. Well, I got through that process and I wanted him to see them while at this next appointment and he noted that they needed spraying again but this time the pain of the burning experience was too much and it triggered an episode then and there. 4 hours, and 4 shots (pain meds and anti nausea and muscle relaxant) later CC was able to take us home and I once again didn’t get the license of the truck that ran me over…everything hurts from feet to hands to mouth to eyes. As for feeling like writing, that desire was fleeting and not very convincing. My apologies.

CC wrote the following to my doctor after I suffered another attack/episode on Thursday 2/28:

“Thursday Wade woke up with numbness in his right hand. I gave him his morning meds and told him to call me at work if it didn't get any better. He phoned me at 11am, speaking really slowly stating " I don't know what to do". When I got home I found him on the floor in the hallway. BP 120/80, BS 184, muscle spasms and chest tightness and pain. I gave him the Ativan, Liquid Potassium, Percocet and put on the CPAP. It took 4 hours before we could get him moved to the bed. Then on Friday he had another overwhelming weakness episode when he tried to walk to the bathroom. The chief complaint is complete weakness all over his body and the chest tightness and difficulty breathing. We are doing the inhalers and Motrin for the breathing. If it continues to happen I will have to go to the ER, but we never seem to get good care at the ER and it is so frustrating.”

It was very strange to read that well after the fact; almost surreal in a way.

Church was very good this past Sunday, and I once again, felt as if he was speaking directly to me, conviction of both a positive and uncomfortable nature. At any rate, it was good to be there and in attendance.

I guess, if you are willing to read into the above 3 larger paragraphs, you might read reasons why I have not kept up on the blog and please know that I feel badly not having kept up with it. I’m hopeful to do better as I go along.

Your prayers are still coveted.

-w

A Listening Change

Saturday, February 23, 2008:

A couple posts ago I included a list of songs the kids have been listening to, which included a song called “Crank That Soldier boy” which I had not researched or scanned because of the innocuous dance that seemed to be at the heart of the song, but after some digging into the lyrics, the song appears to be sexually based and the dance just fronts the song’s acceptance. So, after all of that, it has been removed from listening options and I have scratched the surface of explanation to the kids so that they understand the purpose of my actions without me having to dissect the song for them, explaining each phrase and its meaning.

It is certainly possible that I have misunderstood the lyricist’s intentions, but if so then let it be my mistake and I’ll live wit knowing that my kids are being deprived of a questionable song.

If I’m right, then shame on the writer for targeting a dance audience for his smut. Period.

Big Uncle Kevin came over this morning and stayed for the day and early evening, bringing with him Brittney (17) and Austin (13). More than just bringing the presence of his family and their love, he brought with him a calm to my internal storm just by sitting and talking with him and laughing with him, remembering with him and receiving his loving hugs as only my little (big) brother can give. You know, I just realized the origin of the comforting familiarity of Kev’s hugs; they remind me of the hugs I used to get from Ben Clanton. Ben was my Youth Pastor for a time while growing up at TPC in San Carlos. Ben was stolen from all of us while he lived in Arizona or Nevada, I can’t remember which one…anyway, he was murdered by knife by a youth he had picked up along the road who had wanted a meal. None of that is particularly relevant to Kevin with the notable exception that his hugs feel like those of my very long, long ago friend and big brother, Ben. Wow. What a revelation to comprehend, yet it is pretty simple at the same time. Kev stayed for dinner and just left a short while ago. He took the kids (his and mine) to John’s Pizza place/arcade but it was packed so they went to Sun Splash and played in the arcade for a few hours while I slept. I began to fade before he and I had lunch and after I ate, my body called it quits and I had to take a nap for a few hours (which he said he was expecting and prepared for, having brought his laptop and work with him in case). I need to catch up on sleep; I’ve lost a bit over the past few days.

My brother. May God richly bless him and keep him safe in ALL that he does. He’s head of security for a hospital out in Sutter so his safety is often on the line on any given day at work.

Please be praying for his wife, Chelle, for her continued recovery from some hospital stuff.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Strange symptoms;

The past couple days have included hardcore heartburn which has been somewhat tamed by Gelucil.
I have not been able to go to sleep until nearly 2:00 AM the past couple nights.
I’ve gained back all the weight I had lost last year (now I am back up to 247 where I was at 225 at one point)
Same old exhaustion that comes on very quick and leaves me unable to walk and talk.

More later-

Sunday night, Feb. 17, 2008

Sunday, February 17, 2008

No hospital stays or ER visits, of which I'm blessed to avoid.
Bouts of weakness, near fainting spells, complete body fatigue and general body spasms with localized chest soreness and pain are now nearly daily but spread out.
My parents came and visited this past week, leaving for home today. I had some truly wonderful time with both, especially with my dad.
Hero?
yes.

I'm still uncertain as to why I am to carry and contend with this ravaging ailment which leaves no moment of any day un-scarred, but then, I'm not blind am I? I'm not dying on a battlefield. I'm not in a coma. As far as we know, cancer and tumors are not in play with me, yet so many others live through those stated alternatives. Some don't live.
Whatever I have, it has to be reckoned against the truth that I have a wife who does still love me in spite of what seems now to be a "jip-deal" on the husband clause (for better for worse), I have a daughter and a son who I can't possibly treasure more than I do and have done. I have parents who are still married well past 50 years and still in love.

May I have the stamina to write more tomorrow and the good sense to follow through with the urge.

The emails that come to encourage are blessings and warmth to a cold, mixed up constitution and body. Thank you for writing them.

-w