This a my blog about my life and struggles with HKPP (a terminal disease); Conquests and set backs, relationships and the strengthened resolve of their survival.
Saturday, August 30, 2008
Saturday quick-
Attack yesterday afternoon. I had already decided not to go to the fair because of the level of heat. Just being outside the house had drained me to the point that it triggered the attack, so I was down for another 4 hours or so and then had to get upstairs and go to bed, though everyone wanted to watch a video upstairs, so we did that instead of going right to sleep. We watched "Jumper" which was very entertaining and featured Samuel L Jackson and the young man who played Aniken Skywalker. It is now in my top 20 list for videos. I really liked it.
Today was mostly house work and Facebook work for me. Eddie and Pammy came up with Gracie and hung out with Nana for a few hours then came to our place for dinner and kicking back. We're all meeting at Chris & Brooke's tomorrow for a BBQ and swimming. I think that will be the outing for the day, so we will once again miss church. *sigh*
SeanO put some extra leafs on the rear of the van so that it will no longer bottom out while we drive. He's expecting a ramp/carrier for the van, to arrive this coming week which will hold the motorized chair via the trailer hitch; no more dead-lifting the chair for CC and I like we have been doing in order to take it anywhere. We are very hopeful.
I'm really enjoying Facebook and am hopeful to meet more friends and colleagues via the forum. I uploaded a number of pics this afternoon. Pretty cool. If you haven't checked it out, it's owrthy of your time. Just go to http://www.facebook.com and create your own page (quick and harmless, costs nothing at all for anything) and then you can begin searching for family and friends, folks from your highschool days, college days, Military days, you name it. Just type in their name and scroll through the results until you find who you're looking for, if they're on it too. I've re-connected with folks from my Carlmont days, King's Way days and current internet endeavors. Give it a try, it's quite cool and definitley fun. I even created a on-line group within Facebook for HKPP folks to be a part of, in hopes of being able to connect with them in there.
I'm pretty well done. Got to sleep last night around 3 am...I'm tired.
Done.
Friday, August 29, 2008
Friday Heads up-
Facebook is taking up my time today...less likely I will get to an actual post later.
I think my address on there is:
http://www.facebook.com/profile.php?id=1456926742
but I'm not certain. If you go there, you can look me up by my name, I guess.
I feel kinda bad about the 2 previous long posts...I guess I just got carried away in recollections.
State Fair tonight...? Hopefully. Grand Funk Railroad will be playing at 7:30...would be cool...
Thursday, August 28, 2008
Thursday 's Memories...heads up: long read (again)
I have been experiencing more and more “attacks” or episodes of heavy-duty sweating all over my body. Typically, the sweat is from my head, my face, shoulders, neck and chest/rib area. Often, this will become quite exaggerated (soaking) and following it sometimes are smaller to medium scale attacks, but sometimes there is no attack that follows. The best that I can determine to be the cause is a shift in potassium. Nothing I can do about it, especially when it happens at night while I sleep. Most frustrating.
Yesterday's accomplishments included straightening and further organizing the desk/table in my office, going through 3 boxes of my old vinyl records that Sean brought back over to our house, and spending a found 15 or 20 minutes with Jaden working on a guitar lesson with him.
Back to the sweating topic; I had four of those episodes yesterday and I just got through my 4th one today.
I forgot to add in an accomplishment from Tuesday, which was that I repaired one of our kitchen drawers that would only open part way for us. I was unaware of the actual problem with the drawer; I was just thinking that it was either overfilled or something had fallen down on the side and was blocking it, but then once I took it out I realized that the back and side of the drawer had come apart and therefore was unable to extend all the way out. Once I got it pulled out, I was able to glue it and re-nail it and use the pole vices that my dad got me which did a great job and the drawer is completely repaired and back in use. Happy wife. And I felt very good about actually getting something done completely on my own. My life use to be filled with “fix its” and solutions simply due to my trade, but now I take joy in being able to fix a drawer by myself. Heads up all, none of us know what the future holds for us and I can testify that life’s blessings should not be taken for granted. If you don’t know what your blessings are, you’d better start figuring it out before you lose out on them. (Soap box removed…)
Ok, “And now for something completely different…”
At this point, I figure that it is worth asking if anybody reading this might have Microsoft Windows XP install disks that I might be able to borrow/use for a week or so? I am trying to get missy’s computer up and running being that school has now started, but unfortunately, the computer has committed complete mutiny and will not allow me to perform anything including using the Web or any installations or un-installations. I have backed up everything that I can on it, but I need to reinstall Windows XP on it, so if anybody has access to that and would be okay with my borrowing them for a week or so, please e-mail me at V12pilot@surewest.net and I will be greatly, greatly appreciative.
I got to thinking about the time when I was living down in Huntington Beach in Orange County, Southern California at a time when CC and I were not married. Cary stuff happened in front of me and to me while I lived down there, and at some point, I will probably share my recollections from then, but for now I was thinking of a particular event. So, after being down there for a period of time and in doing a series of different jobs in different neighboring cities, one of the things that was growing in my heart was that I was to ask CC to marry me with the rather specific intent of spending the rest of my life with her. So, I struggled with that, being that I was living in Southern California and she was then living still up in the Bay Area, in a San Jose. So, during this time I was trying to figure out how I was supposed to ask her and kept getting very nervous about asking her to marry me and would she move to Southern California during the time that we would be engaged? At the time, I was working for a music store called Moody Music, which was in Garden Grove, and I was living in a shared apartment down in Huntington Beach. There were three rooms in the apartment; one master and two regular rooms and I was renting one of the regular rooms from the from the guy (Rob) who was actually renting the entire apartment itself and sub-renting to me and another guy. It was pretty cool to live there and just have a room to myself and not have to take care of much more than that. I decorated it with Christmas lights and stuff so I didn't use the actual main light in the room; I just always had the Christmas lights on which kept a nice mellow mood for me. I did not, however, stay in the room for long periods of time. It was just the place for me to sleep and a place for me to get away from everything; come back to the house and lock myself in my room for the time as needed. So there came a point where I was really struggling with how I was supposed to talk to CC, what should I say and how should I say it and trying to really analyze this and figure it all out; go figure…I was trying to analyze something... anyway, one night, about two o'clock in the morning, I was still awake and lying in bed, not able to sleep, and thinking about CC and proposing, when my door opened and my roommate/landlord (so to speak) walked into my room, eyes half closed, wearing pajamas, clearly just got out of bed, walked into my room and without looking at me just looking straightforward, said “Would you please just ask CC to marry you so that I can get some sleep?” He then turned around, closed the door and walked back into his bedroom. Up until this point, I had never mentioned her name to him. I had never said her name. I had never even brought her up in conversation. So there was no convenient way for Rob to have known what was going on with me at all. And it was the closest that I have ever come to having God give me an actual neon sign to get a message across to me as I've ever had in my life. After he walked away, I was actually able to go to sleep (after I had gotten over being freaked out that God was now talking to my roommates to tell them, to tell me, to get on with it). That was rather amazing in my book.
I'm not sure if anybody reading this has ever had a situation where you are convinced, beyond a shadow of a doubt, that God is having other people “read your mail”, so to speak. What I mean by that is when somebody close to you, or somebody who you never met, may come up to you and tell you something about something that's going on in your life that only you and God know and then this person comes up and shares with you information that pertains directly to you? I mean, you know that has to be a God thing; it can't be anything else because nobody else knew about it. So, I don't know if you guys have had things like that happen, but that has happened a lot to me, which now, in hindsight, does appear to me like I'm a slow learner and not always a good listener, especially if God's got to go to people around me to tell me what time of day it is.
Thinking of that reminded my of another similar situation, only this time it was after CC and I were engaged. We ended up going to a church service that we had been invited to the night before, and the church was Fountain Valley Vineyard. The service was being held in a Seventh-day Adventist gymnasium, so we were sitting in folding chairs; a first for me for a church. The room was filled with people and the worship band was just amazing; turns out that the bulk of their players were all studio musicians from the LA basin, so the Christian studio musicians all seemed to go to this particular church. So the worship music was stellar, and very difficult to get over once we were no longer at the church; we had become very spoiled. Anyway, we got into the service and I realized about 5 or 10 minutes into the worship time that I was becoming very emotional. My eyes started to water and I was crying in no time and, again, freaking out because I'm in this new surrounding with a bunch of people around me that I don’t know and I’ve got this incredible woman beside me who is aware that I'm just crying away, losing it. Looking back, I think that God was straight up working in my heart and working to take away the things that didn't need to be there anymore and replacing those empty places with Him. I had to let go of the control. So, once the worship had finished and the teaching had started, we were both very in tune with the pastor and what he was saying; we felt very good about him, about being a part of this church and listening to this pastor. At the end of the service, he was calling for anybody that wanted prayer to stand up and come down to the front, and before I could think about whether or not I wanted to do that, I had stood up. Just after standing, I was having this quibble discussion with myself about sitting back down; “You don't need to be standing right now, you don't know any of these people…” but seconds after I had stood up, there was one of the pastors on the back corner of the stage, and we made eye contact, (which was the last thing I wanted to make with anybody in the room) and he waved me over to come to him. So I walked my way around to him and he stuck his hand out and said his name is Karl Harkey and would it be alright for him to pray with me. I said “Yes, I you could pray with me if you want to, but I don't know what to ask for prayer about. If you want to pray, that's perfectly fine.” and with that, he closed his eyes and he raised one hand and put one hand on my shoulder, and began to pray. He prayed for the "usual things” that are generally pray for with strangers or with a first-time encounter, but then he specifically said “…and help Wade to be at peace with his upcoming wedding to Carolann and help him take joy in the engagement that is unfolding in front of him. Give them direction and peace.” I don't really remember all the rest of the things that he said because, once again, I was completely tripping out that God had shared this intimate and privileged information with this person standing in front of me; a person who I'd never met and had never spoken to, yet he knew CC’s and my names and what I was struggling with, deep down inside. I was absolutely blown away.
That was the time that God, once and for all, got my attention and He has never lost my attention from that point on. Definitely there have been issues and trials that I've gone through but I have never questioned whether God was there or whether or not God was in control. I may not always understand what God is doing or how he's doing it but it is probably more so not understanding why my questions are not answered in my timeframe. Epiphany: Who the heck am I to judge God's timing? God’s motives? Or even God’s actions? I’m far less than a speck of dust. Back to reality…So, anyway, to close this part out, (finally!!) Karl Harkey introduced himself to me and shared with me that he and his wife would be honored to be our marriage counselors, if CC and I didn't have anybody by that point, which we didn't. So, we began a lifelong relationship with Karl and Denise and, to this day, we are still good, good friends, though we don't talk very often. It's not because we don't care or love, it’s just having to do with day-to-day life and lack of convenient connection, being that they still live down in Southern California and we live up here now.
It's also worthy of note that in the summer of 1991, CC and I were living down in Garden Grove. I had been in a band down there since 1988, Forthright, and we had done several concerts from the LA area and Sunset Strip Band clubs to coming up and having performed in Santa Cruz and at Trinity Presbyterian in San Carlos as well. This was a band that we felt was actually going somewhere and we felt really good about. However, we knew that there were some problems happening with some of marriages within folks in the band or affiliated with the band and, at one point in time, I think it was just before summer started, Karl and Denise shared with us that they were aware that there was a spirit of divorce that was plaguing and blanketing over Orange County and LA County. During this discussion with us, they told us that if we were to stay in Southern California, that we would become a statistic of that spiritual plague that was having an effect on the whole LA area. This was no small scenario to consider; it directly affected our jobs, our home, our band ministry and our friends. We prayed about it and then we decided to move up to the Bay Area. I’ve been asked “Why did you guys move up from SoCal?” That was the reason that we moved. We were given a heads up that this was going on and we were told, very directly, what would happen to us if we stayed, so being that God had given us (me) very straightforward messages before this, I didn't feel the need to test that one. So we packed up and moved; we left the band which was a very hard for one for me and the folks in the band as well, and it turned out that one of the band’s key members ended up getting divorced shortly thereafter. Very painful. I also think that it had a direct effect on the band’s ministry as well.
So that’s a silly amount of sharing, but it’s been good to get it written out so I don’t have to keep it in my head anymore.
Quick note that lunch today with Jason was a real blessing for me and a treat. What a wonderful young man and friend.
It’s now nearing 10:30 pm and I’m going to try and get to bed before 11:00 pm.
History 101 dismissed. See you tomorrow?
Sorry
I frustrated.
I tired.
I sleep.
zzzzzzzzzzzzzzzzzzzzzzzzzzzzz..................
Trying to Post on Wednesday night...
Wednesday, August 27, 2008
I am going to use my micro-cassette recorder and it will go ahead and take the place of my words into the microphone going into the computer. It will play from the tape into the computer so I’m going to give it a try and see how things go.
I think I slept very good last night. I got to bed at about 2 a.m. and I woke up this morning at about 10 minutes to 8:00 and I had not moved positions during the night, so I think that's the clear indication of solid sleep and rest as well. There was something cool in the morning when I was getting my snack ready to go for Tuesday morning's PT appointment; Annie had come in and sat down right at the edge of the kitchen and was watching me, so I stopped what I was doing and I leaned down next to her at which point she turned her head away, like she normally does; looking a way but trying to see you with her eyes without turning her head. As she did this, I just said “Kiss?” At which point, she looked back over to me and gave me three or four licks on my forehead and one on my nose. It was directly on cue/command and was very, very cool. It’s been something that I have been working on with her, on a here and there basis; nothing with any real concerted effort, so to speak. It kind of made my morning. She is so loving to her family.
The vacuum that we have been using for the past several years, finally gave up and died so I did some research on the Internet looking for a vacuum that would be the best fit for us. We decided on buying a Bissell vacuum, which has specific design to pick up pet hair and dust/dander. Complete with attachments, it is designed to clean up on carpet as well as hardwood floors and stairs. I was able to use it Monday morning and did a fairly good job of getting all the carpets in the house, but while I vacuumed, I took my time and went slowly; I didn't rush them. I think there's some place to be happy for that it. It always amazes me when you use a bagless/vertical canister vacuum, to watch how much it does and how much dust/dirt it actually pulls up from in the carpet, not just on the carpet. You don't see it when it's in the limits of a vacuum bag, but when you have a vacuum that's got a clear container on the front, it is just incredible how much the old vacuumed would leave behind. That all being said, I feel much better now being able to (possibly) regularly clean up around the house; it will be a very good thing.
As for how Tuesday finished out, I had a good trip to the physical therapist that morning and everything went very well there. Mark shared with me that he felt that my muscles are in the best shape that they have been in several months, so that's very, very good news, and he's also thinking that, if I can maintain this level of muscular strength, I can begin to get back on the weight machines in the next couple weeks perhaps. I CANNOT wait to start getting rid of this weight.
After coming back home, I began working around the house getting small things done and going after small accomplishments. I was able to get the last of the shredding done in the garage that needed to be finished and we were able to specifically locate the files that CC wanted to keep and move them into a location in the garage where they can sit for the time being until we find a permanent place for them. Unfortunately, I chose to lift the boxes and move them into place by myself and as I carried the boxes, I was very aware that I had made an error in judgment; my back hurt very badly as I began to put the boxes down, and in no time at all I was having difficulty breathing and standing (the muscles in my chest and around the ribs began constricting and tensing without release) so I walked myself into the house and into the living room so that I could sit down in the lazy boy chair. CC came in and saw what was going on and then got the necessary medications and by the time she brought them back to me, I was in full attack mode again and that took place a little before five o'clock p.m. After the attack was done, around nine o'clock, she woke me up to get me up into bed. I was able to get myself standing and then Missy helped me walk up the stairs and helped me get into bed. I don't believe that the issues I had with my back Tuesday afternoon/evening, as well as the attack, had anything to do with my physical therapy appointment that morning; I think that it only had to do with the stupid choice of lifting boxes that were heavier than I should have lifted. Theoretically, lesson learned.
Tuesday night was the third night in a row that I have slept solid and in one place, not moving at all, all night. When I woke up Tuesday morning just before 7:00 a.m., I realized that my body had not moved in the past seven hours of sleep…actually, being that I slept until 7:00, then I actually slept eight hours, not seven, like I had thought. That's good to know, and it's good for me to have the solid sleep. It is not good to not move because I’m typically in pain when I wake up from not having moved during the night. Those mornings tend to be slow going…
Temperatures today were supposed to get up into the stupid numbers as are temperatures tomorrow; in particular, Thursday is supposed to get up into the high stupid numbers. I think that we were looking at a high today about 105 degrees (which we got) and I believe that we are looking at a high tomorrow, of 110 – 112 degrees. This Friday is supposed to be less than today was and tomorrow, so we are considering trying to go to the state fair on Friday afternoon and evening; picking up the kids after school and just heading straight to the fair. Having the motorized chair now is going to allow me incredible freedom to be at the park. Hopefully, if I need recharging while we are there, I just have to find an outlet in the shade where I can sit in the chair for an hour or so and the rest and let the chair rest as well and get recharged, somewhat.
Jared, if you're reading this, please know that I had intended to send you off an e-mail a few days ago, but obviously, other things got in the way and I got sidetracked, thus nothing was sent. However, I did write an e-mail to you and I think that it's saved down on the other computer downstairs, so when I get downstairs tomorrow I will look it up and send it off to you. I just wanted to let you know that I was thinking about you and really appreciated your email from he other day. I especially enjoyed looking at your wedding pictures, although after looking at them, it increased my sorrow for having had to miss that wonderful, wonderful occasion. So, look for an e-mail before too very long.
Neil, I just read your e-mail this morning and I so appreciate your taking the time to write out what's been going on for you there. Wonderful congrats on the new guitar! No one will appreciate like you will; that’s because you’re you…profound, huh? I can't believe that when it is so stinking hot here, that it is wintertime for you over there. It would be awesome if it will work out to see Bobby in November, so let's make sure that we are in contact at that time comes around so that we could make connections. We love and miss you guys terribly.
I did want to report as well that, in my chair, I often go with CC and the kids when they take Annie for a walk around the block. It's worth noting that the block is actually a about five or six blocks in actual length; we walk around our circle loop, which is a large loop it takes is about 10 minutes to get all the way around. Anyway, when I am with them, I will often walk Annie while I’m in the chair. It’s very cool. We bought a shoulder harness for her and I am able to hold onto the shoulder harness with my left hand and drive with my right hand, all the while, she runs right beside the chair on my left hand side and stays right with me. When I stop, she stops and often sits. I strive try to keep the pace at a fast walk for her so that she's getting some exercise as well when we go around. We are at the place now where the kids can walk her and she obeys them nearly as well as she obeys CC.
While I was shredding documents the other day, I came across a folder that had all of my old trucks information in it and some of those documents were pertaining, specifically, to my Ford Bronco II truck that I had bought from Theodore Robbins Ford in Costa Mesa or Huntington Beach…I can't remember which city it was/is in. Anyway, that fiasco of buying the truck is worthy of note, though I don't think history will repeat itself in our case and hopefully what happened to us would not happen with anybody else now that we have so many laws and things in place for car dealerships to abide by.
I believe that it was back in 1988, when I decided it was time for me to buy a truck to replace my then dead truck. CC went with me (though we weren't married yet), and we went down to see the dealership, look at their used cars and see if we could find a vehicle that would work for me. We ended up driving a red Bronco II and I really enjoyed it; we really liked how it ran and the actual space in the vehicle in particular; it allowed me to be able to transport my guitars and amplifiers in one trip, which up to that point in time was not feasible. So, we test drove the vehicle, liked it, and then went inside to sign the paperwork, and after getting all the paperwork signed and taken care of, he handed me a set of keys and told me that they had just washed the vehicle while we were inside doing the paperwork and that we could pick it up outside the front doors. So we went outside, and sure enough, the truck looked cleaner than it did when we had just driven it and I noted though, when I got into the truck, that I thought the interior looked a little bit different from how it looked while we test drove it, but I was figuring that I had just not been paying close attention to the interior as much as to the driving. Then leaving the parking lot and driving down the street, away from the dealership, I was noticing that the truck was sluggish and “coughing”, if you will; not being able to really maintain the speed like it did during the test drive; I was very confused. So, the following morning we went back and I was very surprised to see a red Bronco parked in the same location that it had been the night before. And yet, here I was driving a red Bronco... and it was then that I realized that I had test driven one vehicle and that they had switched vehicles and VIN numbers when it came time to do the paperwork, so that I actually drove away with a vehicle that I had not test driven at all. When I went back inside and told him that the truck was having issues, I also confronted them on what was up with there being the other bronco to out there and the guy behind the desk, the salesman that I bought the truck from, actually looked me straight in the face and said, “Everybody, at one point in time or another, buys a lemon, and you just did to, and there's nothing you can do about it; that's how it goes.” To say I was shocked, is a complete understatement. I felt stupid, infuriated, and betrayed, plus, in order for me to be able to actually have a vehicle to drive, I needed to have this one fixed. They agreed to fix it under the warranty that I had purchased, which meant, I needed to take the truck to the service area and pay the deductible to have the truck worked on. So, that's what I did. All in all, I had to have the heads replaced, gaskets replaced, drive shaft replaced, all of which were cracked and or damaged at the time of purchase. To drive it home a week later, I was out of pocket $250 in cash, thanks to the deductible that I had to pay to have the truck repaired. Needless to say, that occasion, that moment in time, has completely jaded me from ever wanting to buy a vehicle from a dealership. I know that there are good dealerships out there (I don't know where they are, but I know that there are good ones out there…somewhere) and I know that I should be able to trust them. My problem is that on my very first purchase, my very first time of buying a vehicle on my own without my parents with me, I felt that I failed miserably and that I was gullible enough to get tricked into buying a lemon; I was too embarrassed to tell anyone about it at the time, so I just sucked it up and dealt with it on my own..., well, CC and I on our own, I guess. I might have told my parents, but I can’t remember now if I did or not at the time. It was kind of crazy to find that paperwork and then have those feelings come surging back up and realize that it's been great to not remember all that. But now that I do remember it, it's better to go ahead and write it down and get it out of my head, so I don't have to keep it as a memory that I can refer to it. If I ever want to read about it, I can now, by going back into the blog and reading. This way I don't have to remember it anymore. Done.
Eli wrote a song that, the moment I heard it live (it was the first time I’d ever heard Eli) I was convicted and struck at his level of honesty and perspective. Before I go on more on Eli, here are the lyrics to that song I just listened to on my Axim with headphones:
“Unqualified”
-lyrics and music: eLi
Every night I stand before you
And please know that I'm so glad you came
Who am I that you should treat me like a hero?
I am no Superman but just another face
If I had it to do over
I can't say I wouldn't do the same
Cuz thru it all I've learned about my God's forgiveness
Well I rejoice cuz I can turn to Him and say
I have stolen, cheated, I have lied
I am prideful and unqualified
I am broken when I realize
It's God's grace, God's grace
That covers me
Every night I stand before you
And please know that I'm so glad you came
Who am I that you should treat me like a hero?
I am no Superman but just another face
I have stolen, cheated, I have lied
I am prideful and unqualified
I am broken when I realize
It's God's grace, God's grace
That covers me (x3)
I was planning on following this current train of thought, by sharing what I just loaded into my Axim (musically/MP3-wise) and was listening to, however, I missed that creative window and now I think I will just leave the lyrical focus on a song written by eLi, someone I could/can call my friend. Do you know of any other Christian artists who have written lyrics similar or the same as these? I haven’t. I don’t think most want to dwell on their own realities of mortality and Adamic nature, I think they want to direct our thoughts toward someone instead of opening such an intimate part of who they have been, which to me would make them someone I want to listen to because I know they can identify with me and my failings. Nearly all Christian artists choose to shine the light away from themselves so that we don’t see their past, while secular artists wear their past as a lyrical badge of tarnished honor or, possibly better said, dis-honor. People listen to the secular artists because they can identify with them…go figure. Perhaps, as Christians, we are missing the boat by only allowing people to focus on our/their future and discounting their pasts. They might listen more if they knew how much alike we often are. I don’t know…maybe I’m just tired. What am I saying?...I AM tired.
Hmmm, it’s now 11:56 pm and I had started this much earlier but was not able to get back to it until a little bit ago. I have proofed it as much as I can so know that there might be some word or punctuation mistakes due to the software not deciphering my words correctly and/or due to me being very tired and my eyes having a difficult time remaining open. Oh well.
Oh yes, tomorrow I plan to have lunch here at my house with
Done.
Sunday, August 24, 2008
Attack this afternoon
was on the couch assembling a vcuume when everything hit. Eyes closed, couldn't think or form thoughts, sweating, chest pains and tightness (very discouraging)
Medicines.
spasms and cramps, body tips over to lying down, cold/hot.
Woke up a couple hours later. in much pain all over, especially my right foot and toes. Right leg very week. Spasms hitting all limbs, chest and abs, stomach.
Need to go to bed, warm up, and get my body to mellow out. Still hard to think and make decisions.
Payback from yesterday? From today? or just because it f 'n wanted to.
Whatever. Nothing but profanity from here on out.
Sunday Morning
Still have to take meds to see if they will mitigate the pain I'm in.
Focus today will be on the garage and getting it finished out. This could be the day...
It's 9:45 am and I slept for a little over 7 hours which is good.
Ok, I'm done.
It is right now 11:44 p.m. on Saturday night, and today really turned out to be a pretty good day. I have not had an attack since Monday, however, each day has had serious bouts of major sweating, followed by sharp right, and sometimes left, shoulder pains with nausea and weakness. Each time I was waiting for the attack to actually form and finish out, however it never came out that way. I'm very sure that these episodes are directly potassium related, instead of nutritional, atmospheric or conditional. Of course, I'm hinging these perspectives directly on the information I received from the home care nurse, but it is her information that has made the most sense and connected the most dots, providing answers to so many questions that we've had about the majority of the symptoms that I experience on a daily basis.
I can't remember if I mentioned in an earlier post that, in the letter that came from Social Security granting us full benefits, they specifically noted that my disability is, in fact, Hypokalemic Periodic Paralysis, along with probable Hyperaldosteronism and other muscle myopathys. Lord willing, this letter will be another rung in the latter that we're having to climb for actual medical treatment that is preventative instead of reactive. What's funny to me, in a black comedy sort of way, is that SSI states in their letter that I do have HKPP and that I likely have Hyperaldosteronism, whereas Kaiser is pushing that I have Hyperaldosteronism (which is a fairly rare condition/disease of the adrenal glands) and because it is a rare condition/disease, they aren't willing to accept/consider that I could actually have two rare diseases at the same time. There are other people that have two and sometimes more than two diseases or conditions, but for some reason, it's not okay for me to have them. Even more ironic is that SSI is basing their determination and conclusions directly off of the clinical notes, the different doctors reports and my primary care physicians eight or nine page letter that he sent to them on my behalf. Is it not amazing that the authors of the information provided to SSI, have are unwilling to reconsider and review their own notes and their own facts? Unfortunately, more than ever, I am of the belief that Kaiser, simply does not want to admit that I have a disease that they do not specialize in. I think when all is said done, they've spent more money on trying to cover this whole thing up than they would have spent, had they just pursued finding the nearest hospital with an HKPP treating physician for me to go and see. Nothing less than stupid.
It's now 12:11 in the morning on Sunday; can you believe that it took me nearly 30 minutes just to read those two paragraphs? I guess I'm tired.
As important as sharing those few thought processes above, is that both kids played in their soccer games today and, though Joshua's team did not win either of their two games, and neither did Missy's team, both kids said they had a very good time and that they really enjoyed playing and that they were having fun while playing. How cool is that? (Click here to see a 15 second clip of Missy at the field) It worked out that I was able to attend all four games which took place in two different locations; one in Orangevale and the other in Folsom. I was definitely aware that during Missy's second game, the heat was soaking in it and becoming problematic for me. When the game was done, we loaded up my motorized chair and the kids into the Van and headed for home. During the ride home, I was experiencing the sweating and the fatigue, so once we got home, I went and reclined in the lazy boy chair and ended up taking a three hour nap and CC also slept for probably an hour or hour and a half while on the couch. Speaking of sleeping, I woke up this morning just before CC's alarm went off at 6 a.m., and I realized that I had not moved since I had fallen asleep 6 1/2 hours earlier. Needless to say, I was very stiff and sore when I began to try and move and it took a little while for my body to agree with my mind that mobility was okay. We had to be out at the field in Orangevale by 8:30 so that Josh could play his game at 9:00. Missy's two games were at 10:45 and 12:30, and there is no question in my mind that it is because of the motorized chair, that I was able to attend all four games and be able to last that whole time without any significant issues being triggered.
I think that CC videotaped the better part of all four games, and I also shot a variety of shots that I thought could be used as intros or outros in a finished video product. It is my hope to upload those videos this coming week and then begin the very slow process of editing and putting together a compilation video of this morning's games. I'll have to confer with my administrative assistant to make sure that I have available time in my schedule this coming week...yeah.
Well, it is now 12:30 in the morning and I think it is time to stop. It is my hope and plan to attend the 11/15 service of Capital Christian tomorrow/today. As far as attacks go, I am far from being out of the woods, so to speak, because the triggers are not necessarily immediate. What I mean by that, is that I can trigger an attack that won't happen for 24 to 72 hours sometimes; it seems peculiar and often we look to the immediate and recent to determine the reason for an attack, however, it's well documented that the manifestation of an attack can sometimes take hours to a day or so, and that physical exertion is one of the most common triggers. I guess, saying all of this, is your prayers are coveted that I would get through tomorrow and Monday without reaping any negative rewards from Saturday mornings excursion.
Hopefully, I'll be able to get another post out later today.
Saturday, August 23, 2008
Games today R seating games
We are now at Missy's
Friday, August 22, 2008
Friday Catch Up
Hmmmm...I'm not feeling my best, but I don't want this to get behind in posts...bleh. If I felt better then I would be more detailed and probably more verbose so, for those who get twisted with wordiness, this entry will not irritate as much...enough words? :-o|
Still not sleeping like I would like, though last night I did get some hard sleep, where I didn't change positions for a matter of a few hours. I had to wake up in order to change positions, something that has become common with me. Often I wake up in the middle of the night, because the top sheet is stuck to me because of the sweating that's going on while I'm asleep. I know that's kind of gross thought, but it is what it is and something I contend with on a nightly basis. I have to sleep with a CPAP machine, as well as oxygen flow from an oxygen compressor beside my bed, and though I have gotten used to the mask that I have to wear, the tubing that connects the mask to the CPAP machine, never seems to be long enough and I end up waking up, because I can't turn my head or move my head without having to reposition the mask or the tubing. Without a doubt, I know this contributes to my inadequate sleep but I am unsure as to how I can remedy the situation.
More sleep, please. *sigh*
A show was on the ID network yesterday (go figure; I can't remember the name...) which included a story on a Sheriff who confronted a 70 year old man with documented clinical issues; the sheriff was there (with two other sheriffs) to physically evict the man from a vacant home he was living in. The issue was not so much that the man was being evicted, but it was the story of this particular sheriff and his daughter. Here's how it went: the sheriff was getting ready for work that morning and as he was getting dressed, his daughter came in and essentially begged him to wear his Kevlar vest, even though he was expecting to be at a desk (I think), so, due to his daughter's insistence, he wore his vest and left for work. In fact, he was called to serve an eviction notice and went to the residence with two other sheriffs to serve the older man staying there. after entering the house, the sheriffs were confronted by the man but he was holding a .45 automatic pistol. He pointed and shot the sheriff 3 times, hitting him in the chest all three times. Had the sheriff not been wearing his vest, the shots would have been fatal. As it was, when each bullet struck the vest, it ricocheted off and two of the three bullets ricocheted into his arms; one bullet to each arm, causing muscle, vain and artery damage in both arms. The two other sheriffs were not shot and because of how they were standing in the doorway at the time of the shooting, they were able to grab him as he was shot and they pulled him out of the doorway out onto the driveway, where they called for backup. So, to speed this up, he ended up getting into the hospital and they were able to stop the bleeding and currently, he is back on the force, full-time with no medical restrictions. Also worthy of note is that the police were eventually able to get the man out of the house without having to use deadly force, even though one of their own had been shot. I was truly amazed and proud of their restraint in dealing with this unstable man. It turned out that the law enforcement was able to contact the man's treating psychiatrist, and the psychiatrist told them to use a particular phrase with the man and that the man would respond to that phrase and essentially do whatever it was they were asking him to do because they used that phrase. That, in and of itself, was a victory in my book.
So, what's the deal with the daughter? When his wife got the call that he was injured and in the hospital, she went and picked up their daughter from school and she told her daughter that "Daddy's been hurt and is in the hospital." To which their daughter replied, "How are his arms? Are his arms alright?" This meant nothing to the mom, except that she didn't know why their daughter would ask that question so directly. When they both arrived at the hospital, they were able to go straight in and see him and the daughter then shared that while she was in her room that morning, there was a very bright light that appeared in the room and then out of the bright light stepped a woman dressed in gold shining very brightly and the woman told the little girl that she must convince her father to wear his vest today, that he will need it and it will save his life. That is why the daughter when to her father, asking him to wear his vest that morning. She then the shared that once she got to school, while she was out on the playground the same woman, who she then was referring to as an angel, told her that her father had been injured and was hurt in both arms, but that he would be alright after the doctors took care of him.
I thought this was so very cool to watch on a secular TV station and to have the real focus of the reenacted story to be that of God's intervention into the life of Islam and end his daughter. The paramedic, who was addressing his wounds at the scene had told him that the shots to the chest would have been fatal had he not been wearing his best, and he shared that his daughter had specifically asked him to wear his vest that morning in the paramedic said "...then your daughter saved your life today.". Thanks to the obedience of this child and, how incredibly that she was not afraid of an angel appearing in her room out of nowhere, her divinely given message to her father saved his life. Watching the story on TV actually gave me a sense of strength and reassurance.
**In case you haven't noticed, I'm definitely feeling somewhat better and as such, am a bit more "talkative", so to speak.**
Physical therapy has been going very well for me, as far as I can tell anyway. I think the same can be said for CC as well, though her issues are in her upper back, shoulders, neck and jaw, where my issues are global; full body. I have become more aware that I rebound faster after an attack, from a muscular standpoint, than I used to. When I was not pursuing the physical therapy. The simple things that everybody takes for granted, like putting on your socks and putting on shoes or slippers using your hands, reaching for a high shelf to put something away or take something down; we don't give much thought to these things. When our bodies are behaving as they should. In my case, I often can tell how my day is going to go physically, by whether or not put my socks on, easily or if it takes uncomfortable effort. I no longer reach with my right hand to reach for things on shelving and such, I typically use my left hand even though I am right handed. I say all of this, because I am now, more often than not, able to put on my socks, take off my socks, get my slippers or shoes on with less effort than it has taken in the past, and I attribute these successes to the work and effort that's being done in my physical therapy visits.
So here's what I can recall from the long weekend, last weekend, when CC took the kids on Thursday to Water World in Concord, and then the kids went to spend Friday through Sunday with Angel and Stephen, down in Hollister. From all reports, everyone had a very good time at the water park and there were no injuries and no issues and much fun was had by all involved, pretty much. After the water park, CC took the kids to a hotel that had an indoor pool. So the kids were able to swim to their heart's delight until the pool closed it like 10 p.m. or 11 p.m. that evening. The next morning, Friday, CC took the kids down into Milpitas, where Angel met them. After handing off the kids to Angel, CC headed back on up home and the kids went with Angel down to Hollister. I don't know what all they did in Hollister, I do know that they were able to go to the coast and they spent part of the day on Saturday at the beach playing in the sand. And I know that Friday night and Saturday night, both nights, the kids played video games and have fun and got very little sleep... the goal was for them to have a great time and I believe that's exactly what they did.
On Sunday, CC's sister Kimmy, connected up with Angel (Angel is Kimmy's daughter) and along with Kimmy's husband Steve, the three of them brought Missy and Joshua back home around mid-afternoon. I didn't realize how anxious I was to see them until they came through the door and I just didn't want to let them go. They came over and sat with me on the couch and shared with me how everything went, how much fun they had had and how they had missed their mommy and me. I was really glad that they were able to go and have a lot of fun, but I was really, really happy that they were back home within my reach.
Tomorrow morning, the kids begin their soccer games; of course, they will both be at two separate fields at two different times, which will take up the entire morning and will cause CC to spend most of it driving. I am planning to go to one field or the other, take my chair with me so that I can watch the game, comfortably and not have to walk all the way to the field and back; please be praying that whatever field I end up going to, does not have mud. That would be most problematic to me. I am planning on taking CC's digital video camera with me so that I can video Josh or Missy from where I sit, and then come back and uploaded into the computer and edit it. I'm hopeful, anyway.
Time to head down for dinner; I'll go ahead and post this so far, and then see if I can add more to it later.
Wednesday, August 20, 2008
Wednesday Thoughts Reviewed
Today turned out to be a productive day, however, productivity seems now to have a price with it, sometimes an expensive price...Fortunately I am not trashed as a result, but I am feeling the effects of accomplishing tasks long intended. I have not been sleeping well, or getting enough sleep so I realize a price will be extracted sooner than later if I don't balance out soon.
It looks like I will begin giving Jayden guitar lessons a couple times a week, if my body will cooperate. Jayden is one of CC's best friend's son. We watch him and his sister after school while their mom works.
Incredible joy in response to getting the letter from Social Security.
Short post again...I'm tired.
Tomorrow is PT and CC is off work (yay!) so I'll have more time with her.
Finished cleaning up my MP3 collection.
Time to call it...
Tuesday, August 19, 2008
We Will Remember Today...
We received a letter from Social Security: GRANTED!!!!
We won our petition for Social Security benefits for my disability!!!
Prayers of thanksgiving-
This morning is likely a
We'll see when PT comes.
Attack last night. Hit just
Both shoulders hurt terribly as did my chest.
Monday, August 18, 2008
Monday Afternoon
I was hoping that I would feel better than I do, in order to write a concise entry, however, I feel poorly regardless of my wants and desires so this will be shorter than most of my diatribes. In order to have something to compare to, I would describe my feeling poorly at this point, as, fairly nauseous, weak, muscle pain and cramping, and just general malaise. Bleh.
Today was the first day of school for both Missy and Joshua. In complete contrast to how I recall my first days of school, Missy and Josh were very excited to get to school and see their friends and begin classes again. CC and I will feel that the kids had really come to me as their friends from school and having a regular connection every day, so we were not surprised. When both kids came home with good reports about their first day of school.
Most of my morning was spent editing MP3s of Sting and The Police. Fortunately, the audio software that I use for multi-tracking and recording allows me to edit and restore MP3s from normal fidelity to good fidelity. Most MP3s are created with 128 bit encryption, that is to say that, when a CD is ripped into MP3 or Windows media format, the standard default encryption and fidelity is 128 bits, which allows you the smallest file size for the best audio, by comparison. Audio that is uploaded onto the Web is generally very compressed audio, and thus it is a smaller bit ratio, allowing for a smaller file size. The larger the bit encryption, the larger the file size, however, the better the quality of the audio. I believe the best audio format is WAV, which in its raw form is not compressed at all. So, why does all this matter? Being a musician as well as being a person who has dedicated the better part of my life to creating the best audio atmosphere I possibly can in the venues that I've worked in, when I listen to recorded music, I want it to be the best quality it can be, technically. When I am able, I go through my MP3 library and restore MP3s to the best quality that they can be, and to keep them as an MP3, I change their bit ratio from 128 to 320 and I also restore the audio fidelity to the songs via the same software. Boy, that took a long time to just say that I spent the morning editing and restoring MP3s to the best quality that they can be, in this morning's focus was on Sting and The Police. I am still in search of the first two albums from The Police; I have really enjoyed their early years in their fresh approach to the music they played.
I took a break for a couple hours, at CC's wise request, and lay down to see if I would feel better, but no such luck, so I am finishing this out. The highlight of my day, though, was receiving a call from Phil, my brother of many, many years. We talked on the phone for quite awhile and caught up with each other's lives. Hopefully it will work out for us to stay in better contact; Lord knows that I have been poor at that in many relationships, unfortunately.
I seem to be able to speak a few sentences at a time and then I have to rest by just hanging my head down and waiting for more strength and more words to come so I can speak them into the mic and it can write into this blog. Again, this software is truly a godsend for me and I am very, very grateful.
Words of gratitude, seldom satisfy the heart of the one who is grateful, yet all we can hope for, is that the one who is and was gracious, will read the words of gratitude and somehow interpret correctly, the heart of the grateful.
I am frustrated and feel badly that I'm not able to write more and to convey more than I am at this point. The issue lies with my strength and my constitution, which are currently both betraying me. In some very, very slight way, I feel some glimmer of identification with the Scripture that says, in effect, "The Spirit is willing, but the flesh is weak...".
Today, I'm weak.
Perhaps more tomorrow, without all the whining.
Monday Early Again...
It's 1:06 am and I have been looking for sound effect files for over an hour and a half, but have found some possible cool ones...we'll see.
Attack today following visit with good friends; same M.O.- sweating, brain fog, spasms then leg/feet locks.
Complete body sweat/soak around 11 pm while on computer; sweat dripping from glasses, eye brows ears, chin...clear evidence of my body dumping major potassium for some reason. Maybe an attack while I sleep tonight...we shall know if CC wakes up from it and/or if the sheets are soaked from sweat when I wake up.
Kids go to school tomorrow... :-o( I like them being home with me. rats.
There's much to catch up on:
- Reporting on the family's time at Water World in Concord
- The kids weekend trip with Angel
- CC's control of the back yard
- My lasting for two shopping outings using the motorized chair
- Visit yesterday (Sunday) with Carl and Madoli
- Saturday was Mantis Day: My run-in with a praying mantis ( a most favorite insect)
- Movie reviews
Oh yes, two of my praying mantis pics...click on them to see them full size:
peace-
Thursday, August 14, 2008
2 Days in a Row Without a Full Attack
Thursday, August 14, 2008.
I left off in the last entry, speaking of medical miracles. There is one very specific and most memorable miraculous healing that took place; I believe it was May 3 of 1998. But before I get to that, I need to recall the day's history. The night before last, CC and I talked long and hard regarding going out down to Concord today, to the water park there and spending the night at a hotel in Concord, and then dropping off our kids with my niece and her husband so that the four of them could spend time on Saturday and Sunday. And then the plan was, after dropping them off on Friday, that we would drive back up here to the house and then sometime on Sunday, Angel, my niece, would bring the kids back to us or we would meet her somewhere midway between her house and ours.
Nothing is ever as simple as it could be, at least not for me anyway. After much discussion and consideration of the travel time in the Van, the expected high temperatures during the day and afternoon, the possible minimal shade opportunities at the water park, the stupid admission fee of $30 just for me to get in, unknown water temperatures contrasting with the exterior heat, and considering the distinct possibility of me having an attack while at the park, made looking at going on this trip, much more a difficult choice than an easy one. The bottom line is that I did not go, however CC and the kids did go.
On this trip, it was not the smart thing for me to go. To say that I miss them is the epitome of understatement. Was I lonely today, once everybody left? Very much so. Why wouldn't I be? It seemed logical to have those feelings so I had them; chose not to focus on them and put a DVD movie in and focused on that instead.
To make sure that I would be covered while CC was gone, I called my parents and asked if they would be able to come up for Thursday afternoon and evening and Friday, while CC was away. My parents arrived today around four o'clock, and spent a very low-key and relax afternoon and evening; just hanging out. I took a two hour nap shortly after they arrived, and then, after talking a bit more and then taking Annie for a walk around the block using the chair, I felt it was time to get ready to go to bed being that it was about nine o'clock.
What is interesting to note about today is that, similar to a certain point yesterday, I became extremely fatigued in just a matter of 30 seconds or so and had a very difficult time keeping my eyes open. It was as if I just had to pass out and go to sleep. That happened yesterday, and it's happened today as well. Prior to yesterday, it has happened on numerous days, normally only one time in a day; occasionally two times in a day, if the day involved longer hours and more activity. I'm sure that there is something to be noted within all of this at the moment. I'm not certain what parallels I could draw from a medically.
The Miracle of the Missing Person
As noted in a previous entry, in October of 1995, I broke my lower back at the L5/S1 location. I went through two surgeries; one surgery, where they fused the L5 and S1 bones together and placed in two metallic plates with bolts to hold it all together and then a second surgery a year later to remove the bolts and the plates and to test the strength of the fusion site. Now, what I had not mentioned in the other entries regarding this occurrence is that about three weeks after the bone actually broke, I began having severe painful shocks down my right leg, in my waist, in my lower back, in my hips, and I would have muscle jumps, where my whole body would jump almost violently, so much so that if I was holding something when one of those jumps would strike me I would throw whatever was in my hands. I didn't mean to throw it, I didn't try to throw it, my hand simply could not hold onto to it and my arms would shoot out in a burst of energy and then drop. CC's and my daughter, Missy, was about two years old at that time, and one of the most incredible things for me in my life at that time was to hold my daughter, but it was immediately clear to us that I could no longer hold her as long as whatever was happening to me was continuing to happen, because I couldn't bear the thought of something happening to her, should I have one of those attacks while I was holding her.
So I'll move fast forward to now passed all of the non-invasive methods of treatments I tried prior to surgery, of which none worked, so eventually I made an appointment with my orthopedic surgeon and I told him "Let's get this surgery done as soon as absolutely possible. This ongoing pain, and these muscle contractions are destroying me and they're destroying my life." The doctor made it very clear to me that the surgery would very likely fix the problems with my bones and the weakness in my back and, by clinical standards and perceptions, my surgeries will be deemed successful. However, he also made it very clear that it was only a 50%-50% chance that the surgery would, in some way, mitigate or stop the severe and debilitating muscle and nerve pain that I had begun to experience short weeks following the actual break. We'll jump ahead now to the end of the second of the two surgeries where both surgeries were deemed miraculous and in credible. And I was told that I have one of the strongest fused sections of vertebrae that he had ever performed. This of course made me feel very, very good about the hard work and the hardware that had been done on the bones. Turns out, that much nerve damage had been done at the moment of the bone break in the L5 vertebrae and in the following months before going into surgery with those loose pieces of bone touching different nerve centers and nerve clusters, possibly even the spinal cord itself on occasion. We had all been hoping and praying that the fixing of the bone in the fusion of the vertebrae would somehow miraculously heal the muscles and nerves in and around that whole area. I was never short on prayers; several churches, several prayer groups, many family, tons of friends were all praying for my healing and restoration and rapid relief of the vicious chronic pain that ultimately would only leave me with the use of heavy, strong narcotics.
A little extra backtrack; after the first surgery. We moved our family from living over in
Fast forward again. Shortly after beginning recovery, I began not sleeping. Simply due to the level of pain that I was experiencing. I could not go to sleep whenever you else went to go to sleep. I would lay awake waiting for some kind of relief so that my brain could take a break and shut off. Shortly after my first surgery in 1996, I was given a medicine that was to help me be able to go to sleep and numb me up enough so that I was not in constant pain. This medicine was Carisoprodol also known as SOMA. I took this medicine for nearly 2 years straight, during which time it served its purpose, very effectively. However, it is a highly addictive drug. Not many hospitals prescribe the use of that particular medicine due to the reality that once Soma goes into the brain and is broken down into its purely chemical form, it is literally the exact same metabolic compound as heroin. My original prescription was one to two 350 mg pills as needed, every four to six hours. After using the medicine for over 2 years, I took myself off the medicine on my own; I stopped cold turkey at the level of taking 12 to 14 pills at a time. The pain that I had been experiencing never went away and just as soon as the medicine would begin to wear off, the pain would ebb and flow right back in to my brain, so I would take more medicine, and on and on it went. I guess the reason that I'm sharing this with you is so that you can understand the magnitude of the miracle that was to come. Not only was I in incredible physical pain, but I was in incredible emotional pain as well. Watching my personality and happiness, slowly drift out of reach, all because I was in a pain that I couldn't escape and the only thing I knew to do was take more medicine. That's not to say that I wasn't trying to use physical therapy and exercising to make myself well, I was doing that as often as I was able, but when people are going through something like this, they tend to feel very much alone, and then if they take heavy narcotics then they spend much more time with themselves and their dreams and their imaginations more than they spend with real people, real friends in real family.
When 1998 had come around, I had become a pretty angry man. I felt God had forgotten me, and at the same time I felt that God owed me nothing, considering all the things that he had done for me in the past that I was not in a position to ask for anything else, because he done so much for me already. I took myself off the painkiller Soma and just began to accept the level of pain as a daily thing. And I took lesser painkillers that were less addictive, and they were less effective as well. During this time, a sore had begun on my left foot; it was a small sore in between my toes. I couldn't see it, let alone I couldn't reach it and I had noticed that my toes had begun to turn a reddish color. So I was figuring that I'm waiting for the infection to come to a head and then I'll deal with that and then the infection will be gone. I was wrong. Over a couple of nights the pain in my left leg had surpassed my threshold, and it had my complete attention. It had not hurt so much prior to this point because both of my legs during that time frame were 50% numb into my feet as well; as if the skin belonged to somebody else; the nerves were completely dead in certain areas and unfortunately, the infection site was one of those areas and the affected toes were also in that same area. My foot, ankle and lower leg (from my knee down) had all turned a brown/reddish color and had swollen as if filled with water. It just looked wrong, almost over night.
I was taken in to see my doctor and he walked in, looked at the foot, pulled the toes apart, looked to the foot again said "Just a minute..." and walked out of the room. Three minutes later walked back in the room with another doctor and this doctor did the same thing; looked at my foot, pulled the toes apart, looked at my foot then looked up at me and said "Can someone drive you over to the hospital or shall we call an ambulance for you?" I was stunned. I asked what the big deal is and can't we lance it and just give me some antibiotic cream to go home with? They both chuckled a nervous serious chuckle and said "No. That's not an option. You have an infection called cellulitis in your left foot, possibly left leg, and we need to get you into the hospital to get IV antibiotics into your body as soon as absolutely possible in order to save your foot and possibly your leg...so, do you have a car or not?" CC drove me over to the hospital, where they whisked me away into a room and hooked me up to multiple IV sites and started pumping antibiotics, fluids, and painkillers in to me. I believe I was in the hospital for 10 days, and both doctors were speechless that I suffered no tissue or bone damage from this infection that, thanks to the nerve damage, I could not feel. I was told that the infection grows quickly and does damage as quickly as it grows; my infection went uncontested for weeks, which should have prevented me from walking and numerous other activities, simply due to the level of pain that I should have been in. The doctors fully expected me to lose my left foot above the ankle and quite possibly below the knee. They had come in and talked with me about that, to help me understand it and to begin accepting and embracing this incredible change that was about to happen to my body because of a terrible infection.
Quite simply put; I guess God didn't want me to lose my left foot. There are no other reasons.
So, hopefully now you have kind of a larger picture of just how screwed up I was between 96 and 97 and into 98, and how angry I was, how careless I was, how apathetic I was, and yet...How desperate I was. By 1998 on a good day, I could walk with only a cane. On a mediocre day or a bad day, if I could walk at all, I had to walk with a cane and crutch, all the while fueling my anger. Oh yes, one of the last filters for you to look through while reading this story; from the middle of March in 1996 to the middle of 1998, my wife and I were unable to even sleep in the same bed.
The morning of May 3, 1998, I woke up in the same mood as I had gone to bed in and saw myself in the bedroom mirror and decided it was time to change the facial hair from one style to another style. I just needed a change of some kind. Something to represent some kind of new day that I was hoping I might be able to grasp onto. On this occasion, I decided to bring in a portable boombox into the bathroom so that I could play some music while I was in the bathroom getting cleaned up and seeing if I could fine-tune my pity party into a most effective state. I paid no attention to the disk in the CD player. I merely pushed play, turned on the hot water, grabbed the washcloths, got my razor out and began staring at myself in the mirror while preparing my scalp to be shaved with the razor and hot water.
Within mere seconds, I was in a trance; staring into my own eyes, locked in a daze that I could not break out of listening to a musical bed that was irresistible to hear, and then listening to words that slowly pulled away the scabs covering my hurts, covering my pains, covering my anger, covering the places that had become familiar, dependable hurts.
Another question in me
One for the powers that be
Its got me thrown and so
I put on my poker face
And try to figure it out
This undeniable doubt
A common occurrence
Feeling so out of place
Guarded and cynical now
Cant help but wondering how
My heart evolved into a
Rock beating inside of me
So I reel, such a stoic ordeal
Wheres that feeling that I dont feel?
Chorus:
There was a boy who had the faith to move a mountain
And like a child he would believe without a reason
Without a trace he disappeared into the void and
Ive been searching for that missing person
Under a lavender moon
So many thoughts consume me
Who dimmed that glowing light
That once burned so bright in me
Is this a radical phase
A problematical age
That keeps me running
From all that I used to be
Is there a way to return
Is there a way to unlearn
That carnal knowledge
Thats chipping away at my soul
Ive been gone too long
Will I ever find my way home?
Chorus:
There was a boy who had the faith to move a mountain
And like a child he would believe without a reason
Without a trace he disappeared into the void and
Ive been searching for that missing person
He used to want to try to walk the straight and narrow
He had a fire and he could feel it in the marrow
Its been a long time and I haven’t seen him lately but
Ive been searching for that missing person
When the song came to an end, my eyes were streaming tears and I knew, right then and there, I KNEW that God was speaking to me. He chose a method (music) an artist (Michael W. Smith) and a mirror for no distractions to share with me that He does love me and that He never left the path we were walking on together,,,I did. He didn't choose the many things that befell me leading up to my back issues and such...I chose them, each one of them, one at a time.
Hearing that song and seeing myself, I knew I was the boy in the song and that song would change my life forever. As I consciously asked forgiveness for my stone casings around my heart and spirit, I felt the undeniable touch of something upon the very top of my head; as if you walk through a doorway and part of a low hanging spider web brushes the very top of your head, I felt that physical touch. It was simultaneously followed by hot electricity which coursed through every part of my body; fingertips to littlest toes. As I blinked my eyes in response to the shock, my eyes opened and the room appeared brighter and more clear/colorful than just seconds before. As if I had taken off smudged contact lenses for the first time, only I don't wear them and didn't wear them then either. Then came more uncontrollable tears, rinsing me out.
I was in a state of shock. Now, I knew what joy felt like; I remembered it vividly. I was in it.
I played the song again and just listened some more and just cried some more while I washed out my insides from the crap and the pain I had been struggling to carry along with me everywhere I went. I realized that I couldn't think of anything to be angry about in that moment. I had truly been healed by an actual PHYSICAL touch of the Holy Spirit upon my shaved head and had been purged and purified through an electrical fire that ran rampantly, terrifically through my broken emotional catacombs and He burned away all the luggage that was no longer mine to keep and drag; He simply did away with it since He knew I'd not the strength to even open their rusty and broken latches.
In those moments of lucid clarity, I promised Him (Jesus, God, Holy Spirit, the Biggest of the Big Dogs) that I would tell this story in short or long fashion to anyone who would ask of me how my back is doing or "what happened with your back?". I would tell of His wonders that morning when I walked into a bathroom with a cane and a crutch and then walked out some time later, walking with no cane, no limp, no crutch, no pain. I did not use a cane again until November of 2006 when it became clear that my disease, HKPP, has brought about permanent muscle damage and weakness in my right leg and right side.
Of everything that I have written up though now in this blog, this entry is unquestionably the most important entry I've written.
Wednesday, August 13, 2008
Recollections & Thoughts
Wednesday, August 12, 2008
Okay, onto the lengthy part of the blog…over 3,000 words, I think…
I got to thinking two nights ago, as I was going to sleep, that it would be good to remember in this blog, some of the miracles that have taken place in my life. So, my hope here is to recall as accurately as I can, some of the many miracles that God has done in my life, and it is through remembering these incredible events that I can share with others what God has done for me and in me and I can remind myself that regardless of how I feel and regardless of what is going on, that He is in control. This will not be a short entry, nor should it be, I guess…
Orange county truck
A few years back, CC and I took Missy and Joshua down to
I put this event in the "miracle" category, because:
1.) I was in a position to be able to help the person in the truck
2.) When I opened the passenger door, it opened without issue
3.) My arm and my shoulder didn't break when all that weight fell on it
4.) I was able to help pull him out of the truck with two of us pulling essentially 250 plus pounds of dead weight (no he wasn't dead, but you know what I mean)
when I saw the truck flipped over, something inside me new that I was going to go, and that I was supposed to go and help the person in the truck. It did not occur to me to call 911 and to wait and watch for somebody else to go and help him or for me to wait for somebody else to come and help me to help him. Anytime I feel that God has given me a directive, something nearly audible in my head that I feel is an instruction of something to do, I consider that miraculous in my life while at the same time, being completely aware of the reality of how small I am and how great He is.
Concert Fight Night
During 1988 through 1991, I was in a band called Forthright, a Christian, hard rock/metal band that played some of the clubs in
What I failed to mention earlier is that, as a band, we chose to dress the part of a hard rock/metal band, which meant that all of us had long hair and that we wore denim, leather, boots and sometimes long coats to increase our stage presence. This night was no different from any other concert night, so I was wearing my cowboy boots denim jeans, a white T-shirt under my black leather biker jacket, which had a sleeveless denim vest over the top of it and the vest itself had metal chains going from the front to the back. So, when I got out of the truck and began running towards this group of guys, I know that they saw a 6' 2", bigger than life, biker-looking guy running towards them, yelling at them to "knock it off" and "stop fighting". Now, in hindsight, I completely realize how stupid this must have seemed and even how stupid it must seem even now, but there was no question in my mind at all that I was supposed to go and break up this fight. I guess I was still on a spiritual high from our concert an hour or so before, and I didn't think twice about what I was supposed to go and do. Brian, on the other hand, had thought more than twice about what I was going to be doing in the brief moments while I was turning the truck around was pleading with me not to go do something stupid. At any rate, when the truck stopped, Brian got out and ran across the street to a gas station and I got out, and started running at the guys in the fight. As I got near to the group of guys, most all of them, including the one who was beating the other one senseless, turned their heads and looked at me, and it was as if the blood ran out of their faces; to me they looked briefly pale with the scared look on their face and all of them scattered, running back to their cars and leaving their friend to die in the street. When I got up to the guy who was lying in the street. His eyes had rolled back into his head and he was bleeding badly from the back of his head and on his neck. Somehow, I was able to cradle him in my arms with his head and neck resting on my right arm with my left arm under his knees, and I picked him up off of the street. It was then that I realized he was probably 5'10" to 6' tall and kind of chubby, so he weighed at lease 200 pounds. When I turned to look into the parking lot, a group of guys were in a convertible, gesturing at me to bring him to them, so I walked as quickly as I could to their car and as I neared their car, one of the guys got out and took off his shirt and wrapped it around the injured guys head, and I handed him off to the guys in the car. No sooner had he left my arms, they peeled out of the parking lot, over the curb and down the cross boulevard, hopefully on their way to a hospital. In the distance I could hear the sounds of sirens approaching so I ran back to my truck where Brian was waiting for me, and we both got into the truck, and I turned it around and headed on home. We got to my house, I went into the bathroom to wash the blood off of my jacket and off of my hands and CC had asked what had happened, because she had not gone to the concert that night. I explained everything to her, and likewise, when the rest of the band got to the house.
I cannot remember if it was the following day or a few days after that I spoke to a pastor friend of mine, pretty much my spiritual mentor at the time, and I shared with him what had happened. I wasn't shaking any longer from the adrenaline that had surged through me that evening, but I was wrestling with what I felt was a slight lack of intelligence and wisdom in that moment of running into a gang fight with the intention to break it up. He shared with me that I had done exactly what God had called me to do in that moment and that, though, it was physically just me running from my truck towards the guys, it is quite likely that the guys saw me plus a number of angelic fighters running towards them that caused them fear, and so much so, that they would all run away. I had not considered that possibility, but after thinking about it, his words seemed almost like the missing piece of the puzzle and to this day, I'm absolutely certain that they did not see me running towards them, but they saw what God wanted them to see.
I don't think I need to clarify the miraculous elements of this occasion, there are far too many of them.
Medical Miracles
Back in October of 1995, I broke my L5 vertebrae into three pieces and subsequently in April of 1996, underwent surgery to remove the broken pieces of vertebrae, and to implant to steel plates with bolts called Steffi plates, which were used to solidify and protect the broken area of my back. Approximately 1 year later, in March of 1997, I had a second surgery in which the surgeons went in and took out all of the metal that they had put in as well as tested the fusion point of the L5 and S1 repair.
The miraculous elements of these two surgeries were that age surgery should have taken between five and seven hours, however in my case, each surgery took approximately 3 hours. This may not seem like a very big deal, but what needs to be factored in his bat. I chose to donate my own blood to each surgery, so a matter of weeks before the intended surgery date, I went in and they collected kinds of blood from me that were to be used for the surgery date. So that I would not have to use common blood from the blood bank. The blood available in the blood bank is not guaranteed to be free of hepatitis or AIDS so it makes the most possible sense to donate your own blood to your surgical procedure so that they simply put your blood back into your body during the surgery as needed. In my case, I had donated blood before the first surgery and had donated enough blood. So that there would be enough to last five to seven hours of surgery time. I received a call two days before my first surgery to let me know that an error had been made within the department that handles the blood in the hospital and that two thirds of the blood that I had donated for my surgery had been destroyed, which meant that once I got into surgery, they would likely use up all the blood that I had left and I would then have to use blood bank blood to finish the surgery out. The thought of this scared me as much as I have ever been scared in my life, but I could not conceive of putting off this long awaited surgery, even for a matter of a couple months in order to donate more blood to the surgery; preparing my mind to go into the surgery was taking all of my conscious effort that I had available. Being that most of my mind and energies were spent trying to get through the terrible pain. That resulted from a broken back. So I told them that we would go ahead and do the surgery and I would take my luck with the blood bank. The miracle is that by the time. My donated blood was running out, the surgery was finishing so that I did not need any additional blood from the blood bank. Both the orthopedic surgeon and the Neuro surgeon were left nearly speechless as to explaining why my surgery took only three hours to complete. In independent appointments with each of them, they shared that they had never had a surgery like mine go that quickly and that well. As far as I'm concerned, that was clearly a God thing. Then comes the second surgery in which they are to take out the metal from my back and the night before the surgery was to take place. I received a call from the neuro surgeon, who told me that the anesthesiologist, who was slated to do my surgery in the morning, happened to come across one of my previous lab results and in that lab results. He noted that certain levels with my kidneys and my liver were abnormally high and that there was nearly 100% chance that, if I was to go into surgery the following morning, and go under the anesthesia, that my body would not be able to recover and come back out from the anesthetic. Bottom line, best case scenario I would go into a coma, worst case and most probable, I would die in recovery. The neurosurgeon shared this with me, including that it is very unusual for an anesthesiologist to look into older labs from a patient going into surgery instead of simply working from the most recent and current labs. This particular anesthesiologist saved my life simply because he decided to look at previous labs as well as the current ones. I believe that God’s hand was in that moment and that He was the reason that the older labs were looked up. Oh yes, I forgot to mention that the second surgery took less time than the first did; also to the complete surprise and shock of both surgeons. One of them asked me, while I was in recovery, if I had asked people to be praying for me that morning. CC or I told him yes and he then nodded his head and said “that’s the only thing that would make any sense then. Amazing.” And then he left.
In This Body: Living with HKPP through Faith and Love of family & community with Wade Odum This was recorded on March 19, 2024 On today...
-
Wednesday, August 08, 2007 I’m back at home on my bed. It hurts to walk and stand and I’m more than tired. No sleep while we stayed at Rosev...
-
Thursday, May 03, 2007 Pretty tired. Kind of long day with only one point of light headedness. My productivity was in emailing and research...
-
4-23-2018 Well, hello there. Pushing towards 2 years of absence from my own blog...I'm frustrated that I haven't kept this ...