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
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