Monday, November 20, 2006
Well, it’s Monday evening and it’s been a fairly productive day.
Today’s accomplishments included getting some appointments cancelled and making some others. We’re making headway on the UCSF referral but are far from handled. The following is undoubtedly mundane and abore, but it is record of today's progress through the use of the phone.
Call and cancel the CT scan: Since I already had the CT scan while I was admitted this past time, there is no need for another scan. I called and left the message for them on the cancellation line. Theoretically they should receive it and cancel the appt.
Call to schedule an appt. with my primary physician or his covering physician: I scheduled an appt. with a doctor from his group this coming Wednesday. I was to have had a follow up with my primary following my release from the hospital, but he's on vacation and I gues the departmenal ball got droped on scheduling me with someone else, so we are following up on something they should have done. Sound familiar?
Call for an appt. with Nutritionist, Kirsten: I called and left a message for her on her line and got a call from CC that she had spoken to her and scheduled a meeting for next week, though I do not recall the day and time. She told CC that I should be eating more carbs than I am currently, but eating more often as well; the smaller meals approach we have tried to keep up from time to time. I'm looking forward to that meeting/appt.
Call UCSF regarding appt. time-frame: I called them and CC called them and determined that once we have the referral from Kaiser, they will double book me for the doctor as soon as possible to get me in ASAP. This has incredible potential to be a huge ball of red tape with a custom fringe of bickering, but I'm hopeful we will get what we need without too much more issue. I sent an email to Member Services at Kaiser stating that we want the referral now and do not believe we should wait until January (which is when the referral doc within Kaiser will see me for Kaiser's official Second Opinion) to get this done. My email left nothing to the imagination, and though you'll find it hard to believe, I wasn't wordy either.
Bracelet Information: I re-wrote the fax and bracelet information and sent and we need to fax it back to them and mail the bracelet to them for replacement. I will rest more securly once the bracelet has been fixed and I have it returned to me. This causes me some stress until it is completed. We'll try to get it off tomorrow.
Brian made it up safely and we had dinner brought to us by a family in the church. We have been truly blessed by the outpouring of love from different families within the church and we are humbled by it. It is so hard to receive, but such a blessing. Some who have given to us and some who have tried to give to us have shared with me that it is as important if not more important for them to give and us receive than not, in that, God is working with and through them and we are to receive when the gift is offered as an obedient act to help them as they help us.
Also, a good friend, George, returned a couple DVDs I had sent him and in return, sent me some DVDs to watch while convalescing, which is very cool. I watched Genesis Live at Wembley this afternoon with Bri.
Killer show.
Well, I’m tired and it’s time to call this a night. Let’s check out tomorrow, shall we?
peace
w
Monday, November 20, 2006
Sunday, November 19, 2006
Sunday Cometh
Sunday, November 19, 2006
It’s Sunday evening and B52’s “Love Shack” is the tune of choice at the moment. Just before it was “The Sign” by Ace of Bass, a pretty vicious write about dumping someone, and not just leaving them but questioning how they could have been foolish enough to have been with them in the first place. That was a nasty inspiration, I’m certain. Anyway, it a tune and band I haven’t heard in quite some time. I liked their debut release but not much after that. Wow, digression so early in the write…
Slept in (again) this morning and have slowly been gaining on my lost sleep. I’m not feeling rested yet, but I’m hopeful I will soon. Angel went home this afternoon after staying with us since Friday. It’s been wonderful having her here and she’s such a help to CC. That was the biggest impact besides the kid’s joy of having her here.
CC wanted to take the family to the Sacramento Library in downtown, so we piled into the van and went down there this afternoon. The library is featuring special events each Sunday afternoon and this afternoon was an A Capella trio representing a 5 person ensemble called “Sovosos” I think…uh oh…memory is fading….oh well. They’re from Oakland and the trio did a great job. Very creative and very fresh. The gent covering the beat-box was exceptional, in my opinion. I really enjoyed their product. Afterwards was a treat for Angel; TCBY yogurt in Arden. I found out that the average smoothie there has from 86 to 116 Grams of Carbs. SERIOUS Carbs. I did not partake. Ya think?
(It’s Prince “When Doves Cry” currently) After yogurt was the trip back home and Missy’s preparation to go to the church tonight for the Agape Feast, which is a church-wide potluck. To my knowledge, there hasn’t been an all-church potluck and this was themed in the “original church”, in the time of the apostles. Sara asked certain folks to dress in old Israel garb and had one person per 3 tables act as host for those tables. She, Don Bowes and a few others played parts and had some lines, but overall, it was just an informal potluck with a theme. At the end of the night Chris directed everyone in communion, which was done separately at each table, and Pastor Henry prayed. 200+ came tonight which is cool on the one and, the hand that looks at the night itself and having a turnout, but it was frustrating on the other hand that the church, FOPC, has over 2000+ members on the roles and a turnout of 200 seems pretty low to me. As the dinner progressed, I began to feel light and started sweating like crazy again, but it mellowed out a little wile later. CC’s amazing; she noticed the sweating and cold hands and asked if I was alright, just after it started. I was pleased to not have to leave the dinner prematurely and by not leaving early I was able to say good evening to my crew who was working the event.
The high point of the night was to see my tech family who I haven’t been able to see since I was hospitalized. These are the folks I miss and love on a weekly-basis. It was so heartwarming to see them and get hugs and handshakes. I try to tell them week in and week out how much I appreciate them and tonight made it very tangible for me, in that I have missed them and not just as colleagues but really as my friends and extended family. Rob, Chris P, Robert P, Scott and Leslie, Madoli and Carl…Blessings to me, each of them. I can write it because I know I’ve said it to them over and over, otherwise I feel writing something like that knowing some of them may or might see it is akin to thanking someone while in prayer to avoid saying in person, on to one, if you understand what I mean. I received a call from Erin Creasey, another of my regular, long suffering tech team, and he said he was calling to see how I am doing. Without a doubt, consider him in the list above as well.
I miss them.
I used the cane most of the day today; I was tired and my right leg still feels weaker and occasionally obnoxious. I don’t like it much but it does make the walking a bit easier and for that, if nothing else, I should shut up. At least I can walk.
(Young MC’s “Bust a Move”) I’ve had my meds now and am typing from the bed. The body is mellowing out as the minutes pass. Last night, this was not the case; I got ready to get into bed and as I was climbing in, I could just feel the vibrations begin within my chest and instantly I was hit with the chills which cause me to become either ridged like a board while I shake almost uncontrollably or I curl into a fetal position to try to maintain some warmth. Last night was ridged and CC was quickly beside me calming me back down and helping me to get warmer. My shirt and sweat pants were soaked through before I knew it and after the chills receded it was very difficult to fall asleep, even though I the chills generally leave me exhausted. I’m pretty sure that those episodes are somehow related to HKPP but I don’t know exactly how. They just destroy me physically when they hit and when they stop, I’m left completely wiped and weak with everything hurting. No fun happening here…
(Paul Revere and the Raiders “Cherokee Nation”…remember that one?) Tomorrow or Tuesday should bring the Cardy! I’m excited to get it and get it into use. It would be great to have in cases like last night, to see if it is potassium related or not.
Also tomorrow, my bud Brian Kunz from Portola Valley is coming for a day to hang, chill at my casa and play with the kids, who are VERY excited to see him, so CC and I can complete some paperwork and get some errands done that would be tough to do with them in tow. Bri was my right hand man when I was at MPPC and is a good and faithful friend of ‘round 8 years now. A very, very good drummer and percussionist with a serious imagination, he is also an exceptional mixing engineer with some skilled live chops. I think he’d refer to himself as “Wacky” on a good day. Bri brings cool, good stuff to the mixing table.
(David Bowie’s “Fame”) Thanksgiving is this week, no it’s no shock, I know, but sometimes I have to be reminded of some of the basic OBVIOUS things, all right? Sheesh. So anyway, before I so rudely interrupted my self, Thanksgiving means my birthday is somewhere nearby. That of course means that, the reason I feel so damn old is, that I am...I ‘spose. Sorry for the brief profane expression…kinda. It was the right word…
I was hoping that 42 was going to be a better year than 41 was, being that 41 began with some major back/muscle/spiritual issues and was tough to get through. 42 looked decent until March when the first of these attacks began. Over half a dozen trips to the ER and 3 hospital admissions since then have rendered this year “unfavorable” at best and my hope is now for 43. Family will be coming next weekend and I’m really looking forward to that, though my niece, Kirsten, is in Hungary and thus the weekend won’t be all it could be, but will be as good as it can without her here. I miss you, hun.
So, on to Monday to see what it holds.
-w
It’s Sunday evening and B52’s “Love Shack” is the tune of choice at the moment. Just before it was “The Sign” by Ace of Bass, a pretty vicious write about dumping someone, and not just leaving them but questioning how they could have been foolish enough to have been with them in the first place. That was a nasty inspiration, I’m certain. Anyway, it a tune and band I haven’t heard in quite some time. I liked their debut release but not much after that. Wow, digression so early in the write…
Slept in (again) this morning and have slowly been gaining on my lost sleep. I’m not feeling rested yet, but I’m hopeful I will soon. Angel went home this afternoon after staying with us since Friday. It’s been wonderful having her here and she’s such a help to CC. That was the biggest impact besides the kid’s joy of having her here.
CC wanted to take the family to the Sacramento Library in downtown, so we piled into the van and went down there this afternoon. The library is featuring special events each Sunday afternoon and this afternoon was an A Capella trio representing a 5 person ensemble called “Sovosos” I think…uh oh…memory is fading….oh well. They’re from Oakland and the trio did a great job. Very creative and very fresh. The gent covering the beat-box was exceptional, in my opinion. I really enjoyed their product. Afterwards was a treat for Angel; TCBY yogurt in Arden. I found out that the average smoothie there has from 86 to 116 Grams of Carbs. SERIOUS Carbs. I did not partake. Ya think?
(It’s Prince “When Doves Cry” currently) After yogurt was the trip back home and Missy’s preparation to go to the church tonight for the Agape Feast, which is a church-wide potluck. To my knowledge, there hasn’t been an all-church potluck and this was themed in the “original church”, in the time of the apostles. Sara asked certain folks to dress in old Israel garb and had one person per 3 tables act as host for those tables. She, Don Bowes and a few others played parts and had some lines, but overall, it was just an informal potluck with a theme. At the end of the night Chris directed everyone in communion, which was done separately at each table, and Pastor Henry prayed. 200+ came tonight which is cool on the one and, the hand that looks at the night itself and having a turnout, but it was frustrating on the other hand that the church, FOPC, has over 2000+ members on the roles and a turnout of 200 seems pretty low to me. As the dinner progressed, I began to feel light and started sweating like crazy again, but it mellowed out a little wile later. CC’s amazing; she noticed the sweating and cold hands and asked if I was alright, just after it started. I was pleased to not have to leave the dinner prematurely and by not leaving early I was able to say good evening to my crew who was working the event.
The high point of the night was to see my tech family who I haven’t been able to see since I was hospitalized. These are the folks I miss and love on a weekly-basis. It was so heartwarming to see them and get hugs and handshakes. I try to tell them week in and week out how much I appreciate them and tonight made it very tangible for me, in that I have missed them and not just as colleagues but really as my friends and extended family. Rob, Chris P, Robert P, Scott and Leslie, Madoli and Carl…Blessings to me, each of them. I can write it because I know I’ve said it to them over and over, otherwise I feel writing something like that knowing some of them may or might see it is akin to thanking someone while in prayer to avoid saying in person, on to one, if you understand what I mean. I received a call from Erin Creasey, another of my regular, long suffering tech team, and he said he was calling to see how I am doing. Without a doubt, consider him in the list above as well.
I miss them.
I used the cane most of the day today; I was tired and my right leg still feels weaker and occasionally obnoxious. I don’t like it much but it does make the walking a bit easier and for that, if nothing else, I should shut up. At least I can walk.
(Young MC’s “Bust a Move”) I’ve had my meds now and am typing from the bed. The body is mellowing out as the minutes pass. Last night, this was not the case; I got ready to get into bed and as I was climbing in, I could just feel the vibrations begin within my chest and instantly I was hit with the chills which cause me to become either ridged like a board while I shake almost uncontrollably or I curl into a fetal position to try to maintain some warmth. Last night was ridged and CC was quickly beside me calming me back down and helping me to get warmer. My shirt and sweat pants were soaked through before I knew it and after the chills receded it was very difficult to fall asleep, even though I the chills generally leave me exhausted. I’m pretty sure that those episodes are somehow related to HKPP but I don’t know exactly how. They just destroy me physically when they hit and when they stop, I’m left completely wiped and weak with everything hurting. No fun happening here…
(Paul Revere and the Raiders “Cherokee Nation”…remember that one?) Tomorrow or Tuesday should bring the Cardy! I’m excited to get it and get it into use. It would be great to have in cases like last night, to see if it is potassium related or not.
Also tomorrow, my bud Brian Kunz from Portola Valley is coming for a day to hang, chill at my casa and play with the kids, who are VERY excited to see him, so CC and I can complete some paperwork and get some errands done that would be tough to do with them in tow. Bri was my right hand man when I was at MPPC and is a good and faithful friend of ‘round 8 years now. A very, very good drummer and percussionist with a serious imagination, he is also an exceptional mixing engineer with some skilled live chops. I think he’d refer to himself as “Wacky” on a good day. Bri brings cool, good stuff to the mixing table.
(David Bowie’s “Fame”) Thanksgiving is this week, no it’s no shock, I know, but sometimes I have to be reminded of some of the basic OBVIOUS things, all right? Sheesh. So anyway, before I so rudely interrupted my self, Thanksgiving means my birthday is somewhere nearby. That of course means that, the reason I feel so damn old is, that I am...I ‘spose. Sorry for the brief profane expression…kinda. It was the right word…
I was hoping that 42 was going to be a better year than 41 was, being that 41 began with some major back/muscle/spiritual issues and was tough to get through. 42 looked decent until March when the first of these attacks began. Over half a dozen trips to the ER and 3 hospital admissions since then have rendered this year “unfavorable” at best and my hope is now for 43. Family will be coming next weekend and I’m really looking forward to that, though my niece, Kirsten, is in Hungary and thus the weekend won’t be all it could be, but will be as good as it can without her here. I miss you, hun.
So, on to Monday to see what it holds.
-w
Saturday, November 18, 2006
Saturday, November 18th, 2006
Saturday morning, November 18, 2006
Hi there-
This morning was Joshua’s final soccer game, CC works 6:00 AM to 11:00 AM and Missy has a drama rehearsal for tomorrow night’s Agape Feast…somewhat busy morning.
I got around 9 hours of sleep and feel pretty rested. I got up and woke up Josh, who was sleeping in our bed, apparently after he got up to see CC before she went to work. He’s having a seriously tough time with separation since my hospital stay. CC and I went to dinner last night with a very good friend last night and as we walked down the driveway, Josh kept calling to us from the doorway, telling us goodbye and crying/sobbing that we were leaving him. It was very hard. Our hearts just break for him knowing how real the fear is for him right now. All of that is to explain why he was sleeping in our bed after CC went to work. His thing right now is for her to wake him up before she leaves so he can say goodbye to her. After that, she puts him in our bed for his comfort and to go back to sleep. So that brings us back to this morning, waking up Josh and making breakfast for me and him while Angel does her morning treatments (for living with CF). After breakfast, she drove us to Josh’s soccer game at 9:00 and we hung out there while he played. The game ended in a tie, which is a pretty good way to close the season. Would have been cooler to win, but it’s better than losing. Missy had a rehearsal at 10:00 and Aunt Judy picked her up and took her there for that. Angel, Joshy and I arrived back at the house just before Missy did. Somewhat hectic morning.
CC has now taken Josh to the team party at Round Table Pizza and Angel, Missy and Nana are working on house work. My job was to keep Annie distracted for a bit and to work on computer stuff for the bracelet and a couple other computer items.
While I was tossing the ball for Annie, CC came outside and brought me the phone and to my wonderful surprise, Kirsten was on the line!!! How wonderful! I haven’t gotten to speak to her since she left for Hungary on her AFS excursion. That call TOTALLY made my day and week! She’s doing great, it sounds like, and she’s keeping the Hungarians on their toes I’d bet. I feel so much better having heard her voice. I brought the phone to Missy and she was quite elated to speak to her as well.
I’ve had some good time talking with Angel today as well. She’s such the sweetheart and also a very independent thinker; I love to listen to her and hear what she has to say and what she thinks. I was around when she was still an infant in a car seat, so it’s been wonderful to watch her grow up and become the beautiful young lady that she is.
Well, it’s back to research for the bracelet so we can get that back to them and returned to us as soon as possible. The Cardy meter has been ordered (last night) so we should see it Monday or Tuesday.
If you would, please be praying for CC and me right now as we face some huge decisions for us, ones on a global scale. Your thoughts and prayers are truly coveted.
Talk to you later-
peace
w
Hi there-
This morning was Joshua’s final soccer game, CC works 6:00 AM to 11:00 AM and Missy has a drama rehearsal for tomorrow night’s Agape Feast…somewhat busy morning.
I got around 9 hours of sleep and feel pretty rested. I got up and woke up Josh, who was sleeping in our bed, apparently after he got up to see CC before she went to work. He’s having a seriously tough time with separation since my hospital stay. CC and I went to dinner last night with a very good friend last night and as we walked down the driveway, Josh kept calling to us from the doorway, telling us goodbye and crying/sobbing that we were leaving him. It was very hard. Our hearts just break for him knowing how real the fear is for him right now. All of that is to explain why he was sleeping in our bed after CC went to work. His thing right now is for her to wake him up before she leaves so he can say goodbye to her. After that, she puts him in our bed for his comfort and to go back to sleep. So that brings us back to this morning, waking up Josh and making breakfast for me and him while Angel does her morning treatments (for living with CF). After breakfast, she drove us to Josh’s soccer game at 9:00 and we hung out there while he played. The game ended in a tie, which is a pretty good way to close the season. Would have been cooler to win, but it’s better than losing. Missy had a rehearsal at 10:00 and Aunt Judy picked her up and took her there for that. Angel, Joshy and I arrived back at the house just before Missy did. Somewhat hectic morning.
CC has now taken Josh to the team party at Round Table Pizza and Angel, Missy and Nana are working on house work. My job was to keep Annie distracted for a bit and to work on computer stuff for the bracelet and a couple other computer items.
While I was tossing the ball for Annie, CC came outside and brought me the phone and to my wonderful surprise, Kirsten was on the line!!! How wonderful! I haven’t gotten to speak to her since she left for Hungary on her AFS excursion. That call TOTALLY made my day and week! She’s doing great, it sounds like, and she’s keeping the Hungarians on their toes I’d bet. I feel so much better having heard her voice. I brought the phone to Missy and she was quite elated to speak to her as well.
I’ve had some good time talking with Angel today as well. She’s such the sweetheart and also a very independent thinker; I love to listen to her and hear what she has to say and what she thinks. I was around when she was still an infant in a car seat, so it’s been wonderful to watch her grow up and become the beautiful young lady that she is.
Well, it’s back to research for the bracelet so we can get that back to them and returned to us as soon as possible. The Cardy meter has been ordered (last night) so we should see it Monday or Tuesday.
If you would, please be praying for CC and me right now as we face some huge decisions for us, ones on a global scale. Your thoughts and prayers are truly coveted.
Talk to you later-
peace
w
Friday, November 17, 2006
Friday morning, November 17, 2006
Friday, November 17, 2006
So the morning started out fairly well, I slept another 11 hours again so I feel like I’m making up for lost time. I’m still able to walk around the house without the cane and am very thankful and encouraged.
After reading an email from a good friend, I re-read my morning email from yesterday and feel that I did not portray my thought very well, as they pertained to me and the kids and discipline, so without getting to far into a proverbial “hole”, I’d like to clarify my thoughts of yesterday.
Our home is the farthest from some kind of rogue military camp/school where the kids obey or are punished. CC also has their complete respect as well as mine and all of us operate very well as a family and CC and I as a team. Since the births of Missy and Joshua, my role has increasingly been the secondary and final stop in the response avenue of communications, in that I seldom interject into conversations that I was not a part of unless I heard phrasing, tone of voice or what I felt to be inappropriate inflection on the part of the children speaking to each other or to CC. I feel that today’s culture and society are increasingly breeding disrespect and creating an environment of desensitization in regards to respect and honor of parents and adults; from schools to family structures.
So with all that being said, my thoughts on the homestead are that our children and children who visit must abide by the respect and honor directed by biblical principles as I know them. I don’t necessarily expect “Sir and Ma’am” but “Mr. and Mrs. or Miss” for visiting adults and such. I do keep in mind that this is not enforced at school where the teachers prefer to be addressed by their first name, which I think is helping to break down the established structures of respect built by preceding generations. I prefer my children to speak to adults as I used to and was brought up to. When kids are visiting I strive for a level of respect but I do understand that their families may not be on the same page as me and thus my expectations can be deemed unreasonable. Some of the kids closest to our family already are used to calling us by our first names and in respect to them, I am watchful of the tone of voice, inflections and the common questioning of “why not?” or “How come” or “Why can’t we” and such like that. I’m a believer in obedience/compliance first then I’m happy to explain my reasoning and intent, but I am not alright with a child not doing something asked of them until they hear the reason why. I hope that makes sense in regards to what I wrote from yesterday and gives better understanding as to my frame of mind. I’m not sitting around waiting for the kids to make a mistake or something like that. I do correct what I feel is out of line or in appropriate and strive to be fair and correctable as well.
Well, I hope that covers that. I feel better about having written it down as well, so that should close that topic.
Our niece, Angel, just arrived and will be here for the weekend to get out of her surroundings for a weekend and help with the house and such for CC. She’s an amazing young lady who was born with Cystic Fibrosis and has chosen life over succumbing to the baggage of the disease. She’s a beautiful young lady who now engaged to a gentleman from her town, wonderfully in love with each other. It will be great to have her here for the few days.
Well, more work needs to be done on the bracelet and Cardy, so I’m off to work on those instead of type my thoughts any more.
peace
w
So the morning started out fairly well, I slept another 11 hours again so I feel like I’m making up for lost time. I’m still able to walk around the house without the cane and am very thankful and encouraged.
After reading an email from a good friend, I re-read my morning email from yesterday and feel that I did not portray my thought very well, as they pertained to me and the kids and discipline, so without getting to far into a proverbial “hole”, I’d like to clarify my thoughts of yesterday.
Our home is the farthest from some kind of rogue military camp/school where the kids obey or are punished. CC also has their complete respect as well as mine and all of us operate very well as a family and CC and I as a team. Since the births of Missy and Joshua, my role has increasingly been the secondary and final stop in the response avenue of communications, in that I seldom interject into conversations that I was not a part of unless I heard phrasing, tone of voice or what I felt to be inappropriate inflection on the part of the children speaking to each other or to CC. I feel that today’s culture and society are increasingly breeding disrespect and creating an environment of desensitization in regards to respect and honor of parents and adults; from schools to family structures.
So with all that being said, my thoughts on the homestead are that our children and children who visit must abide by the respect and honor directed by biblical principles as I know them. I don’t necessarily expect “Sir and Ma’am” but “Mr. and Mrs. or Miss” for visiting adults and such. I do keep in mind that this is not enforced at school where the teachers prefer to be addressed by their first name, which I think is helping to break down the established structures of respect built by preceding generations. I prefer my children to speak to adults as I used to and was brought up to. When kids are visiting I strive for a level of respect but I do understand that their families may not be on the same page as me and thus my expectations can be deemed unreasonable. Some of the kids closest to our family already are used to calling us by our first names and in respect to them, I am watchful of the tone of voice, inflections and the common questioning of “why not?” or “How come” or “Why can’t we” and such like that. I’m a believer in obedience/compliance first then I’m happy to explain my reasoning and intent, but I am not alright with a child not doing something asked of them until they hear the reason why. I hope that makes sense in regards to what I wrote from yesterday and gives better understanding as to my frame of mind. I’m not sitting around waiting for the kids to make a mistake or something like that. I do correct what I feel is out of line or in appropriate and strive to be fair and correctable as well.
Well, I hope that covers that. I feel better about having written it down as well, so that should close that topic.
Our niece, Angel, just arrived and will be here for the weekend to get out of her surroundings for a weekend and help with the house and such for CC. She’s an amazing young lady who was born with Cystic Fibrosis and has chosen life over succumbing to the baggage of the disease. She’s a beautiful young lady who now engaged to a gentleman from her town, wonderfully in love with each other. It will be great to have her here for the few days.
Well, more work needs to be done on the bracelet and Cardy, so I’m off to work on those instead of type my thoughts any more.
peace
w
Thursday, November 16, 2006
Thursday Evening
Thursday, November 16, 2006
So we’ve come to the close of another day and ANY day that is a day away from the hospital is a GRAND day! At least that’s what I think, anyway.
I went with CC to go get the kids from school and then to the medical center to get some labs drawn for my potassium count. That’s another thing we just have to accept until we get the Cardy, which is trips to the lab every 2 days to keep track of my levels. The Cardy will hopefully prove to be a gas saver as well as peace of mind benefit.
While we were out I got hungry, having skipped lunch, and asked if we might stop somewhere to pick up something to eat on our way home, so we went by McDonalds and I found out about 15 minutes later that I had made an error in judgment as to cuisine…I felt pretty sick. We had a couple more places to go then we came back home and I got back on the couch and laid still for the better part of an hour and my system seemed to forgive my idiocy. Lesson learned.
I got up when it was time for dinner and decided to try mobility without the cane and did well, so…maybe no more regular cane use…? We’ll see.
I also got my first shower in several days and that felt great, to say the least.
I’ve been working on my mood, which has been less than fair due to impromptu pity parties and things similar, so I’m trying to maintain a good musical base. Currently is “Stevie Ray Vaughn Live at Austin City Limits”. He’s the epitome of “the other side of the fence” from the boys of G3, which I was listening to just before dinner tonight. Stevie just mesmerizes me in no time at all. He’s got a wealth of chops that I would love to have, more-so than my desire to play like one of the G3 boys. I’m in awe of them and LOVE to listen to them but don’t have the drive to try to learn how to fly like they do on the fret board. John Petrucci from Dream Theater is on their “Live from Tokyo” video and just watching his right hand blows me away; the discipline it takes to move so fast on one string and maintain rhythm at that speed is just beyond me. Also in that concert you have Steve Vai with Tony MacAlpine on rhythm and keys and the seriously incredible bass playing of Billy Sheehan. The ending jam for that show was Hendrix’ “Foxy Lady”, ZZ Top’s La Grange and Deep Purple’s “Smoke on the Water”. As if their sets weren’t incredible enough, they close their show with 3 tunes which stand wonderfully on their own and each player solos in each tune. Billy Sheehan sings “La Grange”; very cool. If you dig guitar, you MUST check one or more of these shows out. I know of three videos of G3; each have Steve Vai and Joe Satriani and the third guitarist is different for each show/concert. 2001 Tokyo has John Petrucci, 2003 Denver has Yngwie Malmsteen and 1996 Minnesota has Eric Johnson (with Satriani’s bassist being the amazing and inspiring Stu Hamm). According to their website, G3, they've toured 6 years so far and are currently in Australia…Hey Neil, DON’T MISS THIS if you can possible help, bro. They've had several guitarists with Satriani, mostly Vai and others but the list of players is a vurtual "who's who" of axe men. The show with Yngwie is very good but Yngwie seems as arrogant as I remember him to be, but the boy has some lethal chops, no doubt.
Wow, I digressed…but then, I guess I can, huh? :-o)
I’ve also been looking at some MPEG clips from Live Aid 1985 (Dire Straights w/Sting, Led Zeppelin reunion) and some other live Zeppelin clips.
We have been checking into the possibility of being seen at San Francisco Medical thanks to my family having taken the initiative and made some calls and we found out tonight that I have to be seen by another Kaiser MD and get the same diagnosis before they will refer me to another medical center other than a Kaiser facility. So we will begin that process as soon as we can. It looks like we will go to Kaiser of Walnut Creek where our Neurologist normally refers his patients for second opinions. Once that’s done we can hopefully receive our referral.
I don’t know what God has in store for me at this point and that uncertainty causes friction within me and un-ease, but I guess I just have to learn to shut up and listen. As most of you know, I don’t shut up well… *sigh*.
So the specific praise for the day appears to be that I can move without the consistent need of the cane and that we know what our next step has to be with Kaiser to move forward. Let’s see what Friday holds…
Peace all
w
So we’ve come to the close of another day and ANY day that is a day away from the hospital is a GRAND day! At least that’s what I think, anyway.
I went with CC to go get the kids from school and then to the medical center to get some labs drawn for my potassium count. That’s another thing we just have to accept until we get the Cardy, which is trips to the lab every 2 days to keep track of my levels. The Cardy will hopefully prove to be a gas saver as well as peace of mind benefit.
While we were out I got hungry, having skipped lunch, and asked if we might stop somewhere to pick up something to eat on our way home, so we went by McDonalds and I found out about 15 minutes later that I had made an error in judgment as to cuisine…I felt pretty sick. We had a couple more places to go then we came back home and I got back on the couch and laid still for the better part of an hour and my system seemed to forgive my idiocy. Lesson learned.
I got up when it was time for dinner and decided to try mobility without the cane and did well, so…maybe no more regular cane use…? We’ll see.
I also got my first shower in several days and that felt great, to say the least.
I’ve been working on my mood, which has been less than fair due to impromptu pity parties and things similar, so I’m trying to maintain a good musical base. Currently is “Stevie Ray Vaughn Live at Austin City Limits”. He’s the epitome of “the other side of the fence” from the boys of G3, which I was listening to just before dinner tonight. Stevie just mesmerizes me in no time at all. He’s got a wealth of chops that I would love to have, more-so than my desire to play like one of the G3 boys. I’m in awe of them and LOVE to listen to them but don’t have the drive to try to learn how to fly like they do on the fret board. John Petrucci from Dream Theater is on their “Live from Tokyo” video and just watching his right hand blows me away; the discipline it takes to move so fast on one string and maintain rhythm at that speed is just beyond me. Also in that concert you have Steve Vai with Tony MacAlpine on rhythm and keys and the seriously incredible bass playing of Billy Sheehan. The ending jam for that show was Hendrix’ “Foxy Lady”, ZZ Top’s La Grange and Deep Purple’s “Smoke on the Water”. As if their sets weren’t incredible enough, they close their show with 3 tunes which stand wonderfully on their own and each player solos in each tune. Billy Sheehan sings “La Grange”; very cool. If you dig guitar, you MUST check one or more of these shows out. I know of three videos of G3; each have Steve Vai and Joe Satriani and the third guitarist is different for each show/concert. 2001 Tokyo has John Petrucci, 2003 Denver has Yngwie Malmsteen and 1996 Minnesota has Eric Johnson (with Satriani’s bassist being the amazing and inspiring Stu Hamm). According to their website, G3, they've toured 6 years so far and are currently in Australia…Hey Neil, DON’T MISS THIS if you can possible help, bro. They've had several guitarists with Satriani, mostly Vai and others but the list of players is a vurtual "who's who" of axe men. The show with Yngwie is very good but Yngwie seems as arrogant as I remember him to be, but the boy has some lethal chops, no doubt.
Wow, I digressed…but then, I guess I can, huh? :-o)
I’ve also been looking at some MPEG clips from Live Aid 1985 (Dire Straights w/Sting, Led Zeppelin reunion) and some other live Zeppelin clips.
We have been checking into the possibility of being seen at San Francisco Medical thanks to my family having taken the initiative and made some calls and we found out tonight that I have to be seen by another Kaiser MD and get the same diagnosis before they will refer me to another medical center other than a Kaiser facility. So we will begin that process as soon as we can. It looks like we will go to Kaiser of Walnut Creek where our Neurologist normally refers his patients for second opinions. Once that’s done we can hopefully receive our referral.
I don’t know what God has in store for me at this point and that uncertainty causes friction within me and un-ease, but I guess I just have to learn to shut up and listen. As most of you know, I don’t shut up well… *sigh*.
So the specific praise for the day appears to be that I can move without the consistent need of the cane and that we know what our next step has to be with Kaiser to move forward. Let’s see what Friday holds…
Peace all
w
Thursday morning
Thursday, November 16, 2006
It’s 11:25 and I slept about 11 hours last night, so I’m catching up night by night. It was harder to go to sleep last night for some reason, plus the muscle jerks are still happening once I get truly relaxed. I’m going to have to do some more research on that aspect, they are alarming and frustrating as well, but at least I know they are coming now, so they don’t catch me completely off guard.
I’m again blessed by the emails coming through; they bring a peace to my heart.
I’m going to pursue ordering the Cardy meter today and have been reading up on its use and calibration technique, which apparently takes some getting used to. Also, we are re-faxing our instructions for the Medic Alert bracelet today as well so we can get that back ASAP. I think I mentioned that it came but that it omitted a significant warning on the engraving so we asked them to re-do it.
I was thinking my parents were coming up today, but CC said they had talked with her this morning and that it makes more sense for them to come when they will have more time instead of today, so, if you guys are reading this, I love you and am looking forward to seeing you in a week or so. I’ll plan to call today as well.
I talked to my sis last night and that was reassuring and a blessing. I found after the fact, that I was starving for certain things while in the hospital and one of those things was family so it was very cool to hear her voice last night.
CC’s (and my) niece Angel is coming up tomorrow to help her with the house and stuff, which is HUGE for CC, since she has not been able to get to much of it at all and now especially with me home she wants it cleaned and such but hasn’t had time to do it, so they both will go after it tomorrow and she’ll feel far better.
We’ve got labs to do today so a trip back up the Kaiser is coming soon. It will be good to get back out and about, even if it is just to do an errand or two.
Since being home, though I’m stuck on the couch to a great extent, the disciplinarian seems to be back at home…the kids have been used to pushing the bar to the max or Joshy having a melt down and such and bringing CC to the point of locking it down or letting it go depending on her energy. It seems when I’m home, it always gets locked down so the kids are also acclimating back to that familiar territory. I’ve grown up caring about the tone of voice, the phrasing and inflection when a child speaks to an adult or parent and that matters to me, so the kids are learning that it will have to matter to them too.
Well, that’s it for now. I’ll check in later-
peace
w
It’s 11:25 and I slept about 11 hours last night, so I’m catching up night by night. It was harder to go to sleep last night for some reason, plus the muscle jerks are still happening once I get truly relaxed. I’m going to have to do some more research on that aspect, they are alarming and frustrating as well, but at least I know they are coming now, so they don’t catch me completely off guard.
I’m again blessed by the emails coming through; they bring a peace to my heart.
I’m going to pursue ordering the Cardy meter today and have been reading up on its use and calibration technique, which apparently takes some getting used to. Also, we are re-faxing our instructions for the Medic Alert bracelet today as well so we can get that back ASAP. I think I mentioned that it came but that it omitted a significant warning on the engraving so we asked them to re-do it.
I was thinking my parents were coming up today, but CC said they had talked with her this morning and that it makes more sense for them to come when they will have more time instead of today, so, if you guys are reading this, I love you and am looking forward to seeing you in a week or so. I’ll plan to call today as well.
I talked to my sis last night and that was reassuring and a blessing. I found after the fact, that I was starving for certain things while in the hospital and one of those things was family so it was very cool to hear her voice last night.
CC’s (and my) niece Angel is coming up tomorrow to help her with the house and stuff, which is HUGE for CC, since she has not been able to get to much of it at all and now especially with me home she wants it cleaned and such but hasn’t had time to do it, so they both will go after it tomorrow and she’ll feel far better.
We’ve got labs to do today so a trip back up the Kaiser is coming soon. It will be good to get back out and about, even if it is just to do an errand or two.
Since being home, though I’m stuck on the couch to a great extent, the disciplinarian seems to be back at home…the kids have been used to pushing the bar to the max or Joshy having a melt down and such and bringing CC to the point of locking it down or letting it go depending on her energy. It seems when I’m home, it always gets locked down so the kids are also acclimating back to that familiar territory. I’ve grown up caring about the tone of voice, the phrasing and inflection when a child speaks to an adult or parent and that matters to me, so the kids are learning that it will have to matter to them too.
Well, that’s it for now. I’ll check in later-
peace
w
Wednesday, November 15, 2006
Who are you?
Wednesday, November 15, 2006
This one's brief; I just received an email a few minutes ago from an anonymous sender who I guess emailed me through the blog site. It didn't give me any info except "Anonymous user" and I'd really like to know who was saying hi so I can say hi back.
Whoever you are, please email me again, same way if you wish, but include your name and a way to contact you, if you're willing.
Hope to hear back from you-
peace
w
This one's brief; I just received an email a few minutes ago from an anonymous sender who I guess emailed me through the blog site. It didn't give me any info except "Anonymous user" and I'd really like to know who was saying hi so I can say hi back.
Whoever you are, please email me again, same way if you wish, but include your name and a way to contact you, if you're willing.
Hope to hear back from you-
peace
w
Wednesday mornin'
Wednesday, November 15, 2006
Good morning-
I slept for 12 hours last night...Go figure. It's hard to describe how it feels to sleep back in familiar surroundings and not be woken up every 3 hours for another poke in the arm or medicine due. It is SO GOOD to be home!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Annie completely freaked out when she saw me. I had come in from the van and gotten onto the couch while Annie was outside and CC came to the patio doorway and Annie came to greet her and CC said "Where's daddy?" and she said that Annie cocked her head, and BOLTED into the living room where she couldn't control her excitement, licked me, then ran in a couple circles, licked me again ran some more circles and then ran outside to the back yard and ran laps around the hedge, full speed, which is something she does when she's excited. At close to 90lbs, I'm thankful the patio door was Open when she bolted outside. She spent the next number of hours coming and and checking on me, lying down beside the couch, often where I could lower my hand and touch her head. It's so cool to have the love of a pet.
Speechless. A very good and long time friend came by last night and brought us a gift to enable us to afford the Cardy meter. I haven't gotten to see him much just due to life schedules, mostly on my side, and our friendship goes back to my college days where we began a very cool and long lasting friendship. His visit last night just blew me away. He and I will always have a depth to our friendship which will be unlike any other, which is undoubtedly a God-thing and blessing. I'm still humbled to bottom of my heart.
Life for a life, bro.
My job for the next several days is to remember that I cannot do and move like I used to right now and to choose not to be angry and frustrated by that. I don't want to use a cane. I don't want to walk slowly. I don't want to have to ask for help. I know this isn't necessarily forever, but it always feels like it at the time. I have to accept that I cannot be alone for long periods of time or be places that people don't know about, in that I have to let people know where I am going to be so I'm not stuck in a situation where I've got no one knowing where I am. I have to keep my cell phone charged and likely change my quick-dial numbers to include 911, something that makes all kinds of sense, even if you aren't sick or at risk. I don't want my kids or wife scared anymore. Missy and Josh were scared that I wouldn't come home from the hospital, and I know it's not my fault, but I DO feel responsible for their fear of it. Case in point, CC just called and said she had visited Josh at school during lunch time today and had to bring Joshy into his classroom before lunch ended because he would not let her leave without tears and cries that she can't leave him. Much of it is due to age and emotions par for that course, but this has become intense since my attack last Wednesday. It is so hard on them. I don't want my family or friends feeling helpless to do something . I'll get through all this, I know it, but right now it's hard to do.
*Bleh*
Well, that's it for the morning, I guess.
Thank you for your emails; they are healing notes in this time of life.
We shall see what the afternoon holds in store...
peace all-
w
Good morning-
I slept for 12 hours last night...Go figure. It's hard to describe how it feels to sleep back in familiar surroundings and not be woken up every 3 hours for another poke in the arm or medicine due. It is SO GOOD to be home!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Annie completely freaked out when she saw me. I had come in from the van and gotten onto the couch while Annie was outside and CC came to the patio doorway and Annie came to greet her and CC said "Where's daddy?" and she said that Annie cocked her head, and BOLTED into the living room where she couldn't control her excitement, licked me, then ran in a couple circles, licked me again ran some more circles and then ran outside to the back yard and ran laps around the hedge, full speed, which is something she does when she's excited. At close to 90lbs, I'm thankful the patio door was Open when she bolted outside. She spent the next number of hours coming and and checking on me, lying down beside the couch, often where I could lower my hand and touch her head. It's so cool to have the love of a pet.
Speechless. A very good and long time friend came by last night and brought us a gift to enable us to afford the Cardy meter. I haven't gotten to see him much just due to life schedules, mostly on my side, and our friendship goes back to my college days where we began a very cool and long lasting friendship. His visit last night just blew me away. He and I will always have a depth to our friendship which will be unlike any other, which is undoubtedly a God-thing and blessing. I'm still humbled to bottom of my heart.
Life for a life, bro.
My job for the next several days is to remember that I cannot do and move like I used to right now and to choose not to be angry and frustrated by that. I don't want to use a cane. I don't want to walk slowly. I don't want to have to ask for help. I know this isn't necessarily forever, but it always feels like it at the time. I have to accept that I cannot be alone for long periods of time or be places that people don't know about, in that I have to let people know where I am going to be so I'm not stuck in a situation where I've got no one knowing where I am. I have to keep my cell phone charged and likely change my quick-dial numbers to include 911, something that makes all kinds of sense, even if you aren't sick or at risk. I don't want my kids or wife scared anymore. Missy and Josh were scared that I wouldn't come home from the hospital, and I know it's not my fault, but I DO feel responsible for their fear of it. Case in point, CC just called and said she had visited Josh at school during lunch time today and had to bring Joshy into his classroom before lunch ended because he would not let her leave without tears and cries that she can't leave him. Much of it is due to age and emotions par for that course, but this has become intense since my attack last Wednesday. It is so hard on them. I don't want my family or friends feeling helpless to do something . I'll get through all this, I know it, but right now it's hard to do.
*Bleh*
Well, that's it for the morning, I guess.
Thank you for your emails; they are healing notes in this time of life.
We shall see what the afternoon holds in store...
peace all-
w
Tuesday, November 14, 2006
So where I am now
Tuesday, November 14, 2006 at 3:17 PM
I realized that I didn't include a note to say that email is the best method to communicate right now or by leaving comments on this blog. I'm shying away from the phone for the time being while I come back around and get all the meds and rest stuff figured out and such.
I hope you understand and know that I'd love to get a comment on the blog or an email (v12.pilot@comcast.net) from you when you have a chance. It's cool if time doesn't permit, I totally understand. I look forward to hearing from you when time DOES permit.
Peace and blessings all-
w
I realized that I didn't include a note to say that email is the best method to communicate right now or by leaving comments on this blog. I'm shying away from the phone for the time being while I come back around and get all the meds and rest stuff figured out and such.
I hope you understand and know that I'd love to get a comment on the blog or an email (v12.pilot@comcast.net) from you when you have a chance. It's cool if time doesn't permit, I totally understand. I look forward to hearing from you when time DOES permit.
Peace and blessings all-
w
I'm back.
Tuesday, November 14, 2006
Hi all-
Well, another unwanted chapter has come to a fortunate close. CC came and picked me up today and brought me home. I'm THE most blessed and fortunate husband without question. I'm so thankful, it's hard to write.
CC has shared with me the love and care from so many of you, it is hard to think of how to thank you for your caring and support. I guess it's easiest to say that I know I'm better because of your prayers and support and love and I'm indebted to God for the large, extended family he has given and built for me and us over the years. It's so good to be home.
To keep my head together while I was in the hospital, I decided to write and keep my mind on the here and now so I wrote about what happened and kept a daily journal as best I could. I'm pasting that below and you are welcome to read it or blow it off; it was necessary for me to do to remind myself of what reality is and was. I was telling CC on the way home that because I'm feeling better that I am having to accept that feeling better does not equate to healed and that a new chapter of our lives has begun and I just have to accept it and eventually embrace it so I can move forward.
So, below is the hospital journal. It's a LONG one so don't bother reading if you bore easily.
From here out, I will keep up as much as possible on a daily basis.
Peace all-
love, wade
~~~~~~~~~~~~~~~~~
Life is moving along at an unremarkable pace and then, all of a sudden, life changes and changes dramatically and as if that isn’t enough of a challenge, it changes without you blessing or foreknowledge. Who would have thought I would be writing this on a laptop from a bed in the Telemetry Unit in Kaiser Hospital. I sure didn’t.
Wednesday, November 8, 2006
This last one began at work, in a staff meeting regarding benefits updates and changes. Fortunately for me, work allowed spouses to attend this particular meeting, not just because I don’t do well in retaining that type of information to share with my wife afterwards, but fortunate because she was with me when this attack happened. I had been sitting through the meeting, next to CC (my wife), and taking pathetic notes and watching my wife take all the info in, when I began to sweat like crazy again (this sweating has happened before) and just like that I was irritated. Earlier, just prior to the meeting beginning, my boss walked over to me and put his hand on my shoulder and noticed it was cold and then put his hand on my head and remarked I was “cold as death” and asked another co-worker to feel my head and he remarked similar. Shortly thereafter the meeting started and my wife arrived. As the meeting concluded I was feeling somewhat light-headed and as I pushed my chair away from the table, I realized I was pushing harder with my hands and arms then my legs and thought “uh oh…”. When I stood up I had to hold the table for balance and could tell that I had lost most of the feeling in my feet and my lower legs. It had started again.
CC took hold of my hand and we walked, or better said she walked and I leaned, towards my office. As I moved, I was aware of decreased sensations in my legs and feet, so much so that I felt as though I was walking with someone else’s feet and legs. It was very difficult to walk. I was having to shift my hips in such a way as to propel them forward in kind of a swinging motion. Very strange and foreign feeling accompanying my underlying panic.
Once we got to my office I remained standing while leaning against the desk until CC brought my chair around from the other side of my desk and I sat. She gave me the dose of liquid potassium I had in my office but it didn’t make any difference, though granted, it was only a half dose. She left me to go get the van and in what I think was just a matter of a minute or two, she returned to help me to the car and I was having great difficulty in seeing at that point and she literally carried me (my arm over her shoulder) and got me to the van. She later told me that some of my colleagues were outside and saw her carrying me and came to help, one of them offering to drive my truck back our house while she drove me in the van, an offer she accepted. I have had some attacks in the past where my truck remained at the office and we had to ask for help to get it home or in one case she road her bike to work that night and brought the truck back home. I was and am very grateful that this was not going to be the case in this scenario.
When we got to the house, CC went in and grabbed the secondary dose of potassium and gave it to me but my condition didn’t change for the better. Very shortly thereafter the symptoms had progressed and I was having difficulty breathing and swallowing and couldn’t hold my head up or keep it still. I could hear but not see much except the dashboard as my head moved forward to back as we stopped and started at stoplights and stop signs. CC said she felt she could get me to the hospital in faster time than it would take and ambulance to be called, arrive and leave with me. I don’t know how long it took us to get to the ER, but she said she kept me talking to her throughout the ride; asking me questions and such. Once we got to the ER docking bay, she saw and asked two paramedics who were standing outside the ER top help get me into the ER itself. They grabbed a wheelchair and then got me from the car and into the chair and wheeled into the ER check in. I’m guessing we got fast-tracked but don’t know for sure, either way, I was wheeled in to the triage nurse who asked CC a couple questions and asked me a question and I couldn’t answer. She then felt my arm and then head and said I needed immediate attention. CC said we were quickly moved into one of the ER “rooms” and I have recollection of a bunch of movement all around, a huge oxygen mask being placed on my face, and CC said a doctor came in very shortly thereafter and checked me out and read the paperwork she’d brought explaining what HKPP is and what has taken place.
The next several hours are a blur to me which is probably just as well; it’s not necessarily the memory I want to keep.
Once again, my aunt and uncle showed up and came to my bedside to let me know they were their and to give their love. I think my uncle ended up spending the bulk of the 6 hours they stayed in the waiting room while my aunt stayed with CC and watched me like a hawk. I have only some blurred memories of her there and I can remember hearing my uncle’s voice saying “we’re here with you”. I wonder if they will ever know the level of investment that makes in me.
CC said that they hooked me up for an ongoing EKG and began to watch the heart rhythms carefully and got some labs sent off pretty quick and at some point before getting the labs back, gave me some IV potassium combined with a pain killer that was ineffective. She said I began to have a very difficult time with the pain in my arm due to the IV and she had them shut it off. Shortly after that I she said she spoke to me and asked me questions but that I didn’t answer her and was staring past her so she ran and got a nurse who came back and initially thought I was fine since my eyes were open but she told him otherwise and someone else came in with the lab result that my potassium was 7.5. I was told that things become dangerouse when the level is 5.5 or higher. Judging by their reaction, this was a battle I was quite apparently loosing. The excessive potassium will cause a stroke or heart attack. One of the nurses came in quickly with insulin and glucose and got them into the IV to counter-act the high potassium and after a while I was able to speak and can remember seeing CC and the nurses and feeling as though a truck had run me over. Apparently, insulin and glucose when used in a particular way can cause the body to “dump” potassium fairly quickly and since I was already neck deep in an attack, they had nothing to lose by this tactic.
Also during this time in the ER, my blood pressure was remaining low as it had been a number of times in the previous few days and that condition combined with the potassium got me admitted to Hotel Kaiser, once again.
Thursday morning, November 9, 2006
Somewhere in the midnight to 2:00 AM time frame I was moved from the ER to the ICU where they could monitor my heart more directly. Every three hours I was visited by someone in a smock or scrubs either bringing something in a syringe or taking something from me in a syringe, or so it seemed. The ICU room was fairly large in size and the wall that faced the nurse’s station was just a huge glass partition with a large sliding glass “patio door”, more or less. Their rule was that if you had a question you were to buzz them by intercom and not go out to the nurse’s station. Very controlled atmosphere. I don’t remember much at all from that room. CC was there until around 2ish in the morning and then she went home. I believe my bro Kev (Kern) came to see me in there but I can only recall his clothing was all black, I think. He stayed for a while with CC and me and then had to take off. I vaguely recall CC bringing the kids to see me in there. I don’t recall seeing anyone in there but the admitting doctor, CC (and the kids once) and Kev.
Friday, November 10, 2006
Around 3 AM this morning the nurse came in to let me know that they had opened a bed up in the Telemetry unit and that I would then be moved there. Around 5:30 AM the male nurse came in and got me into a wheelchair and moved me over into the Telemetry unit. They called and left a message for CC on her cell to let her know I’d been moved. A new doctor came to see me today, Dr. Hussa, who took a very distinct interest in my situation and condition. He agreed with the diagnosis of Hyperaldosteronism and though he hadn’t seen an HKPP patient prior, he felt I matched the criteria. Prior to seeing Dr. Hussa I had seen CC and during her visit, she had reminded me that Dr. Stewart had scheduled a CT scan for the end of the month to ascertain whether or not there was a tumor on my one of adrenal glands and asked me to ask the doctor to move the CT scan up to this visit. When the doctor and I spoke this morning I asked him if he would move the scan time frame up to today or tomorrow, if I’m still in that long, and he said he’d see what he cold do.
I tried to walk and found my legs not so cooperative or supportive, so I used a walker for the day and will likely use one tomorrow as well. It is so frustrating; I feel betrayed by my body. After my surgeries in ’96 and ’97, the walker was the means to being able to walk again, so pride had no place in the recovery and in this case it is the same; pride has no place in the recovery and I have to do what I have to do to get better, with or without a walker.
In the later afternoon, the nurse came in to say that I have a CT scan scheduled for 7 PM tonight and not to eat or drink anything else until after the scan. So that’s a mixed blessing; I get to have the scan moved up but cannot eat or drink until after the scan. While Cc and the kids were there, the nurse brought in the liquid I was to drink; 1½ cup at 5, 6 and then at 6:30. I made it through the first two hours but could not do the 6:30…This stuff tasted like luke warm, room temperature radio active old faucet water. It was WORSE than liquid potassium. When it was 6:45, a nurse came in to take me to Radiology for the CT scan. After getting into the room, I was asked to get onto the table, which I managed, and laid on my back the technician came over, raised up the table to machine height and put what I thought was the iodine in my IV, since the CT has to be done with iodine in your system mixed with the liquid yuck you have to drink prior. When I asked what it was, he said, “Just a regular saline flush to get the process started.” I had a brief moment of panic and asked him how much saline did he use and he told me the minimal amount and I quickly explained me reason for the concern and he felt badly but said he didn’t see anything in my chart saying anything about no saline (this is a moot point since the saline was used, now it is just a prayer and hope that it does not trigger another episode, which praise God, it did not.)
We did the test and came back to the room where CC had just returned to bringing dinner! I told her of the saline and we just hoped together that nothing would come of it. Sometimes an episode can happen up to 72 hours after the trigger itself, so it’s a waiting game now. The true highlight of my day was to see CC and the kids (Big Kev came by too and he is/was a blessing as well. He’s family)
Saturday, November 11, 2006
I’ve managed to walk now with the use of a cane to help my right side which seems to be losing the battle of muscle in this fight. The Physical Therapist came in today to help me start getting back into mobile shape. She gave me some tiring exercises to do on my legs and on my right shoulder. Tiring, but cool. Now I can walk the halls with the use of the cane and strengthen my legs and shoulder while I’m in bed. Hopefully I will be walking without the cane soon and can eventually get back to some degree of normalcy.
My boss, Pastor Chris Alford, came by to talk a bit and pray with me. He shared his heart and concern for me, in particular as it pertained to my working and such. He felt I returned too early to work the last time I had to deal with an attack, and I hesitantly agreed. It is worthy of note though, that the pressures of work build quickly and with great measure because my staff consists of just Rob (Fisher) and me and when one is gone it leaves much work on the shoulders of the other and I was made aware of those stresses while I was convalescing and felt the faster I return, the sooner Rob receives relief. Perhaps the outcome of this will somehow bless the church and Rob, though I cannot see immediately how as of yet.
We are praying for God’s complete healing in me, but that is impressively NOT up to me and God knows and has reminded me of His hand in my life; the miracles upon miracles, the moments of Divine insight and direction, Angelic protection, Holy patience and undeserved grace, mercy and compassion which have all been the building stones in my life. I can, and perhaps at some point will, recount the number of times He saved me from certain death and logical harm. When He placed his Touch upon my head and healed me of my back pain on May 4, 1998. He owed me nothing, just as He owes no one, yet he chose to pity me in my painful and pathetic state. It somewhat makes me want to simply say, “I’m all out of miracles…I’ve used them all up” as if I had any stored up somewhere. I don’t want this, but who am I to say it is not mine to have?
Okay, I wipe my eyes and continue. Back to the “here and now” and leave the “what will be” to Him.
I love what I do for a living. I especially love my co-workers and especially those I work with so closely. I fear the uncertainty of having a solid handle on my disease; if I work in a building alone or I suffer an attack, I’ll be hard pressed to get help in time and will put someone I work with in the very hard and terrible position of having to summon help for me and feel some responsibility for that which they have no control over. Now, I realize that reads rather dramatic, but consider what Mark from Facilities had to deal with when I collapsed in the Rec Hall and what possible baggage it offers to his memory. Though I’m so very grateful for his friendship and help that afternoon, I don’t feel that I gave him a choice. All that is to say that I have to be more responsible and accepting of my circumstances and conditions, which has to include the possibility of suffering an attack at a very inopportune time.
Okay, so with all that being said, there’s not much more to the day; no more drama or pain.
After CC and the kids left, I asked for my pain medicine and planned to go to sleep. Unfortunately, my mind had some unrelenting fears it wanted to court but not divulge, so I have spent the next several hours wondering if I would see my wife and kids again, “will I die tonight” and other wonderful topics worthy of a sensational pity/fear party for one.
Morning cannot come too soon.
Sunday, November 12, 2006
I woke up in a better frame of mind today; less stressed and worried. I don’t know the cause of my fears from last night, but at least they aren’t present today.
CC came this morning and sat with me while we waited for the doctor to come by. During the time we waited we talked quite a bit, discussed our current situation with my work, her work, insurance and stuff like that. We got out for a couple of walks around the unit floor which is relaxing for me; just being with her changes my mind-frame and my spirit and joy comes back into my heart. While we continued to wait, she encouraged me to take a nap and I slept for a good 2 hours. I had no idea I’d sleep like that. While I was falling asleep I suffered several body jerks/muscle spasms which can be very disturbing, like a jolt or how’d you’d jump if startled. My issues with them besides the uncomforting of the jolt and the quick, snapping to consciousness, are that they often hurt my shoulder, arm and/or neck when they strike. They seem to hit each time I go to sleep no matter where I am, whether it’s a nap or a night’s sleep.
Anyway, after waking from the nap, we asked the nurse to page the doctor and shortly thereafter he came in and spent a good 15 to 20 minutes with us explaining what he believes has gone on and where we are now. I’ll try to bullet-point these, though CC probably has the more accurate recount of that conversation:
It is probable that I will be hospitalized until Tuesday or Wednesday
My blood pressure is becoming less volatile and more controlled
He believes that the Spironolactone has made a significant difference in my BP and what is being attempted is a rapid change-over from my “normal” blood pressure medicine to more calculated amounts of the Spironolactone.
He believes (as CC has from the beginning) that the blood pressure is directly related to the Hypokalemia and he explains that when the blood pressure is low, the body tries to kick up the pressure by pushing sodium and such into the blood and pushing out the potassium
He believes that even the slightest amount of saline could certainly trigger an attack duo to the evident fragile balance with my system.
The CT scan shows no tumors, which is good, though it has little to do with the adrenal glands continuing to screw up in my system, meaning that a tumor would have immediately explained the hyperaldosteronism but the lack of seeing one simply means that the adrenal glands are malfunctioning for other reasons, genetic or otherwise and still have to be controlled medically.
He anticipates and is recommending that more invasive tests be done to ascertain more specifically how the adrenal glands are functioning, one of which is running a very small tube into the adrenal vein and taking a direct sample of its production to determine the level of imbalance that they are responsible for.
After meeting with him, CC left to go pick up the kids and a few movies for us to watch as a family (Joshy or Missy sits beside me on the bed and cuddles up pretty close while we watch the movies. Missy seems to be very much the “Daddy’s girl” at this point and the cuddling helps her to relax from her current fears that I won’t be coming back from my stay here.) And CC got a couple for me to watch on my alone time.
Oh yeah, CC got an email from the neurologist we have been working with and he plans to come visit me tomorrow. That should be a good and hopefully informative meeting.
So that’s today, Sunday day and evening…
Sunday night/Monday morning
It’s now Monday morning, November 13, 2006 at 12:41 AM. About 11:00PM I asked the nurse for a sleeping pill since I had just previously taken some pain pills for the shoulder and lower back pain, and I wanted to go right to sleep…Well, I went right to sleep alright, right straight into a dream that was eerily familiar but moving in fast motion and no matter what I did in the dream, I could not slow my vision down or mellow out my mind. It was nearly hallucination in it’s realism. Everything felt like it was unstoppable and I tried to wake up a few times but couldn’t get out of the dream. Somehow, on one more attempt, my eyes opened and I saw the window blinds that face the hallway in the unit and I snapped back to reality that I was in the hospital and not in that horror-land that I couldn’t get away from, but I also realized instantly that it was the sleeping pill that brought it on and that I cannot go back to sleep until the pill has left most of my system. So, what am I doing now? I’m typing this at 12:57 AM, watching American Idol Rewind and just finished eating a banana, an apple and 2 mozzarella cheese sticks.
I believe that “regular” or un-induced nightmares are fairly easy to exit in most cases, meaning, I can identify them as a dream and can close them out, BUT nightmares that come after taking some kind of medicine or sleeping pill are painfully hard to close out or wake up from. This one I just had contained so many familiar faces and people that it blurred reality and fiction as quickly as it started and I couldn’t tell is I was awake or asleep most of the time. Wow. It was so hard to exit. I’m going to try the whole “sleep-thing” again now that it is 2:00 AM and see what happens.
Monday, November 13, 2006
This morning came with no after effects of this morning’s mind-games, thank God (truly).
CC came right after work this morning. It is remarkable to me how she brings light with her wherever she goes and coming to me brings me peace and rest, just seeing her.
We talked more and made some phone calls for hooking up with Kaiser’s Nutrition Department and Member Services. We also put a call in to Aflac regarding my disability. While she was here my neurologist came in to see me and it was a very helpful meeting with him. He is certain that I have two very rare conditions (Hyperaldosteronism and HKPP) and feels it is likely that I may have issues with Hyperkalemia as well as Hypokalemia, in that I suffered from excessive potassium in my system as well. He feels that my system is fairly unstable versus a normal body which manages itself chemically and such internally. Mine does not manage itself and has become increasingly unstable requiring closer attention to my wellbeing. He completely agrees that I must get the Cardy meter even if Kaiser won’t purchase it. He feels it will be a critical part of our puzzle in keeping me in balance. He was also concerned at my excessive sweating (I now have had to have my bed sheets changed 3 to 4 times a day due to my sweating through the linens. I have had to change gowns 3 to 5 times a day as well since I have been getting up and around on my own) and cold limbs, but doesn’t know what that is at this point. He also let us know he had a lengthy conversation with my Nephrologist, Dr. Stewart, who has been managing my BP meds. We are very encouraged by this because we believe one of the real keys for getting through this faster than not, is to have the doctors in communication with each other and trying to work together.
Shortly after he left my new doctor, Dr. Mitchell, came in who took over my care from Dr. Hussa, who worked the weekend. We got caught up with him and he noted that I’m now one just TWO BP meds; Spironolactone and Atenolol. I came in taking, like 5 or something like that. Anyway, he expects me to be able to leave tomorrow or Wednesday if my BP remains in the “normal” range. Light at the end of this particular tunnel! The meeting and introduction was very cool for both CC and me. We are making progress.
After he left, CC left to go and pick up the kids and grab dinner and bring them all back to see me. While she was gone, my Physical Therapist came back and we did some exercises and went for a walk, WITHOUT the use of the cane, thank you very much. When we returned, Sara Dills was at my room door and she and I talked for 15 minutes or so before she had to leave. It was SO good to see her and have a visitor. She’s one of my colleagues at work, with whom I work with each weekend and for all dramatic events and such (being that she’d the Director for Worship Arts). It was great to see her. She was unaware of what happened on Wednesday even though she attended the same meeting that CC and I were attending when this whole thing began.
When CC returned with the kids, she brought me a couple more movies and what Missy had said she wanted to bring me today; a frozen yogurt. I enjoyed about a third of the yogurt and began to get cold so I stopped eating it and decided to go for a walk to warm up…Wrong call. Though nothing substantial came of it, due to my sweating and remaining in bed, my gown was again wet and the combination of having eaten the frozen yogurt with the cool air on the gown began to give me shivers. I took the blanket CC had brought me from home and she helped me put it over my shoulders and we began to walk and I made it a short distance when I knew I was going to have chills shortly, so we returned to the room and I put the blanket around me and a nurse came in to change my bedding. Once the bedding was changed, I got back into bed and had the blanket still around me and in a matter of a minute or two, my body temp was back to normal and rising again. I’m like my own microwave oven…
I watched one of the movies she brought the day before, “Click”, which ended just as she and the kids arrived today. The second movie she brought “Underworld: Evolution”, was one I had asked for and though most of my friends now wouldn’t watch it and I KNOW CC would never watch it (it’s about vampires and lycans i.e. werewolves), it touches that part of me from my youth that really enjoyed D&D and fantasy role play. The movie is shot incredibly and it is impressively produced and directed. I was going to watch it tonight, but thought better of it since I had so much fun with the nightmare from a previous evening.
It was a quiet night after the family left and I called it a night after watching some more TV.
Tuesday, November 14, 2006
I just finished watching “Underworld” and the doctor came in to let me know that my potassium has remained between 4.5 and 4.7 and that I am taking 50mg of Atenolol morning and night and now on 100mg of Spironolactone morning and night and THAT’S IT! How COOL! He said that I can go home today! I asked for the caution light numbers for the BP and he said if it goes into the low 100’s or above the 140’s. Also that if it does go there, to just head in to Emergency because it is very likely that I will end up there shortly thereafter. We MUST get the potassium meter ASAP to avoid as much of this as possible. With it, we can monitor my potassium and better know when to administer it and when not to take it. If an attack begins, theoretically, CC can get a reading from me and know within a minute or so as to my K+ level.
I’m so pleased to close this chapter of “medical visitation”.
It’s my intent to post this on the Blog site that I know has been vacant now for a week, so that folks can learn of what has gone on these last 6 days and I won’t have to email everyone the same thing or bother folks with it who don’t necessarily want to know.
Hi all-
Well, another unwanted chapter has come to a fortunate close. CC came and picked me up today and brought me home. I'm THE most blessed and fortunate husband without question. I'm so thankful, it's hard to write.
CC has shared with me the love and care from so many of you, it is hard to think of how to thank you for your caring and support. I guess it's easiest to say that I know I'm better because of your prayers and support and love and I'm indebted to God for the large, extended family he has given and built for me and us over the years. It's so good to be home.
To keep my head together while I was in the hospital, I decided to write and keep my mind on the here and now so I wrote about what happened and kept a daily journal as best I could. I'm pasting that below and you are welcome to read it or blow it off; it was necessary for me to do to remind myself of what reality is and was. I was telling CC on the way home that because I'm feeling better that I am having to accept that feeling better does not equate to healed and that a new chapter of our lives has begun and I just have to accept it and eventually embrace it so I can move forward.
So, below is the hospital journal. It's a LONG one so don't bother reading if you bore easily.
From here out, I will keep up as much as possible on a daily basis.
Peace all-
love, wade
~~~~~~~~~~~~~~~~~
Life is moving along at an unremarkable pace and then, all of a sudden, life changes and changes dramatically and as if that isn’t enough of a challenge, it changes without you blessing or foreknowledge. Who would have thought I would be writing this on a laptop from a bed in the Telemetry Unit in Kaiser Hospital. I sure didn’t.
Wednesday, November 8, 2006
This last one began at work, in a staff meeting regarding benefits updates and changes. Fortunately for me, work allowed spouses to attend this particular meeting, not just because I don’t do well in retaining that type of information to share with my wife afterwards, but fortunate because she was with me when this attack happened. I had been sitting through the meeting, next to CC (my wife), and taking pathetic notes and watching my wife take all the info in, when I began to sweat like crazy again (this sweating has happened before) and just like that I was irritated. Earlier, just prior to the meeting beginning, my boss walked over to me and put his hand on my shoulder and noticed it was cold and then put his hand on my head and remarked I was “cold as death” and asked another co-worker to feel my head and he remarked similar. Shortly thereafter the meeting started and my wife arrived. As the meeting concluded I was feeling somewhat light-headed and as I pushed my chair away from the table, I realized I was pushing harder with my hands and arms then my legs and thought “uh oh…”. When I stood up I had to hold the table for balance and could tell that I had lost most of the feeling in my feet and my lower legs. It had started again.
CC took hold of my hand and we walked, or better said she walked and I leaned, towards my office. As I moved, I was aware of decreased sensations in my legs and feet, so much so that I felt as though I was walking with someone else’s feet and legs. It was very difficult to walk. I was having to shift my hips in such a way as to propel them forward in kind of a swinging motion. Very strange and foreign feeling accompanying my underlying panic.
Once we got to my office I remained standing while leaning against the desk until CC brought my chair around from the other side of my desk and I sat. She gave me the dose of liquid potassium I had in my office but it didn’t make any difference, though granted, it was only a half dose. She left me to go get the van and in what I think was just a matter of a minute or two, she returned to help me to the car and I was having great difficulty in seeing at that point and she literally carried me (my arm over her shoulder) and got me to the van. She later told me that some of my colleagues were outside and saw her carrying me and came to help, one of them offering to drive my truck back our house while she drove me in the van, an offer she accepted. I have had some attacks in the past where my truck remained at the office and we had to ask for help to get it home or in one case she road her bike to work that night and brought the truck back home. I was and am very grateful that this was not going to be the case in this scenario.
When we got to the house, CC went in and grabbed the secondary dose of potassium and gave it to me but my condition didn’t change for the better. Very shortly thereafter the symptoms had progressed and I was having difficulty breathing and swallowing and couldn’t hold my head up or keep it still. I could hear but not see much except the dashboard as my head moved forward to back as we stopped and started at stoplights and stop signs. CC said she felt she could get me to the hospital in faster time than it would take and ambulance to be called, arrive and leave with me. I don’t know how long it took us to get to the ER, but she said she kept me talking to her throughout the ride; asking me questions and such. Once we got to the ER docking bay, she saw and asked two paramedics who were standing outside the ER top help get me into the ER itself. They grabbed a wheelchair and then got me from the car and into the chair and wheeled into the ER check in. I’m guessing we got fast-tracked but don’t know for sure, either way, I was wheeled in to the triage nurse who asked CC a couple questions and asked me a question and I couldn’t answer. She then felt my arm and then head and said I needed immediate attention. CC said we were quickly moved into one of the ER “rooms” and I have recollection of a bunch of movement all around, a huge oxygen mask being placed on my face, and CC said a doctor came in very shortly thereafter and checked me out and read the paperwork she’d brought explaining what HKPP is and what has taken place.
The next several hours are a blur to me which is probably just as well; it’s not necessarily the memory I want to keep.
Once again, my aunt and uncle showed up and came to my bedside to let me know they were their and to give their love. I think my uncle ended up spending the bulk of the 6 hours they stayed in the waiting room while my aunt stayed with CC and watched me like a hawk. I have only some blurred memories of her there and I can remember hearing my uncle’s voice saying “we’re here with you”. I wonder if they will ever know the level of investment that makes in me.
CC said that they hooked me up for an ongoing EKG and began to watch the heart rhythms carefully and got some labs sent off pretty quick and at some point before getting the labs back, gave me some IV potassium combined with a pain killer that was ineffective. She said I began to have a very difficult time with the pain in my arm due to the IV and she had them shut it off. Shortly after that I she said she spoke to me and asked me questions but that I didn’t answer her and was staring past her so she ran and got a nurse who came back and initially thought I was fine since my eyes were open but she told him otherwise and someone else came in with the lab result that my potassium was 7.5. I was told that things become dangerouse when the level is 5.5 or higher. Judging by their reaction, this was a battle I was quite apparently loosing. The excessive potassium will cause a stroke or heart attack. One of the nurses came in quickly with insulin and glucose and got them into the IV to counter-act the high potassium and after a while I was able to speak and can remember seeing CC and the nurses and feeling as though a truck had run me over. Apparently, insulin and glucose when used in a particular way can cause the body to “dump” potassium fairly quickly and since I was already neck deep in an attack, they had nothing to lose by this tactic.
Also during this time in the ER, my blood pressure was remaining low as it had been a number of times in the previous few days and that condition combined with the potassium got me admitted to Hotel Kaiser, once again.
Thursday morning, November 9, 2006
Somewhere in the midnight to 2:00 AM time frame I was moved from the ER to the ICU where they could monitor my heart more directly. Every three hours I was visited by someone in a smock or scrubs either bringing something in a syringe or taking something from me in a syringe, or so it seemed. The ICU room was fairly large in size and the wall that faced the nurse’s station was just a huge glass partition with a large sliding glass “patio door”, more or less. Their rule was that if you had a question you were to buzz them by intercom and not go out to the nurse’s station. Very controlled atmosphere. I don’t remember much at all from that room. CC was there until around 2ish in the morning and then she went home. I believe my bro Kev (Kern) came to see me in there but I can only recall his clothing was all black, I think. He stayed for a while with CC and me and then had to take off. I vaguely recall CC bringing the kids to see me in there. I don’t recall seeing anyone in there but the admitting doctor, CC (and the kids once) and Kev.
Friday, November 10, 2006
Around 3 AM this morning the nurse came in to let me know that they had opened a bed up in the Telemetry unit and that I would then be moved there. Around 5:30 AM the male nurse came in and got me into a wheelchair and moved me over into the Telemetry unit. They called and left a message for CC on her cell to let her know I’d been moved. A new doctor came to see me today, Dr. Hussa, who took a very distinct interest in my situation and condition. He agreed with the diagnosis of Hyperaldosteronism and though he hadn’t seen an HKPP patient prior, he felt I matched the criteria. Prior to seeing Dr. Hussa I had seen CC and during her visit, she had reminded me that Dr. Stewart had scheduled a CT scan for the end of the month to ascertain whether or not there was a tumor on my one of adrenal glands and asked me to ask the doctor to move the CT scan up to this visit. When the doctor and I spoke this morning I asked him if he would move the scan time frame up to today or tomorrow, if I’m still in that long, and he said he’d see what he cold do.
I tried to walk and found my legs not so cooperative or supportive, so I used a walker for the day and will likely use one tomorrow as well. It is so frustrating; I feel betrayed by my body. After my surgeries in ’96 and ’97, the walker was the means to being able to walk again, so pride had no place in the recovery and in this case it is the same; pride has no place in the recovery and I have to do what I have to do to get better, with or without a walker.
In the later afternoon, the nurse came in to say that I have a CT scan scheduled for 7 PM tonight and not to eat or drink anything else until after the scan. So that’s a mixed blessing; I get to have the scan moved up but cannot eat or drink until after the scan. While Cc and the kids were there, the nurse brought in the liquid I was to drink; 1½ cup at 5, 6 and then at 6:30. I made it through the first two hours but could not do the 6:30…This stuff tasted like luke warm, room temperature radio active old faucet water. It was WORSE than liquid potassium. When it was 6:45, a nurse came in to take me to Radiology for the CT scan. After getting into the room, I was asked to get onto the table, which I managed, and laid on my back the technician came over, raised up the table to machine height and put what I thought was the iodine in my IV, since the CT has to be done with iodine in your system mixed with the liquid yuck you have to drink prior. When I asked what it was, he said, “Just a regular saline flush to get the process started.” I had a brief moment of panic and asked him how much saline did he use and he told me the minimal amount and I quickly explained me reason for the concern and he felt badly but said he didn’t see anything in my chart saying anything about no saline (this is a moot point since the saline was used, now it is just a prayer and hope that it does not trigger another episode, which praise God, it did not.)
We did the test and came back to the room where CC had just returned to bringing dinner! I told her of the saline and we just hoped together that nothing would come of it. Sometimes an episode can happen up to 72 hours after the trigger itself, so it’s a waiting game now. The true highlight of my day was to see CC and the kids (Big Kev came by too and he is/was a blessing as well. He’s family)
Saturday, November 11, 2006
I’ve managed to walk now with the use of a cane to help my right side which seems to be losing the battle of muscle in this fight. The Physical Therapist came in today to help me start getting back into mobile shape. She gave me some tiring exercises to do on my legs and on my right shoulder. Tiring, but cool. Now I can walk the halls with the use of the cane and strengthen my legs and shoulder while I’m in bed. Hopefully I will be walking without the cane soon and can eventually get back to some degree of normalcy.
My boss, Pastor Chris Alford, came by to talk a bit and pray with me. He shared his heart and concern for me, in particular as it pertained to my working and such. He felt I returned too early to work the last time I had to deal with an attack, and I hesitantly agreed. It is worthy of note though, that the pressures of work build quickly and with great measure because my staff consists of just Rob (Fisher) and me and when one is gone it leaves much work on the shoulders of the other and I was made aware of those stresses while I was convalescing and felt the faster I return, the sooner Rob receives relief. Perhaps the outcome of this will somehow bless the church and Rob, though I cannot see immediately how as of yet.
We are praying for God’s complete healing in me, but that is impressively NOT up to me and God knows and has reminded me of His hand in my life; the miracles upon miracles, the moments of Divine insight and direction, Angelic protection, Holy patience and undeserved grace, mercy and compassion which have all been the building stones in my life. I can, and perhaps at some point will, recount the number of times He saved me from certain death and logical harm. When He placed his Touch upon my head and healed me of my back pain on May 4, 1998. He owed me nothing, just as He owes no one, yet he chose to pity me in my painful and pathetic state. It somewhat makes me want to simply say, “I’m all out of miracles…I’ve used them all up” as if I had any stored up somewhere. I don’t want this, but who am I to say it is not mine to have?
Okay, I wipe my eyes and continue. Back to the “here and now” and leave the “what will be” to Him.
I love what I do for a living. I especially love my co-workers and especially those I work with so closely. I fear the uncertainty of having a solid handle on my disease; if I work in a building alone or I suffer an attack, I’ll be hard pressed to get help in time and will put someone I work with in the very hard and terrible position of having to summon help for me and feel some responsibility for that which they have no control over. Now, I realize that reads rather dramatic, but consider what Mark from Facilities had to deal with when I collapsed in the Rec Hall and what possible baggage it offers to his memory. Though I’m so very grateful for his friendship and help that afternoon, I don’t feel that I gave him a choice. All that is to say that I have to be more responsible and accepting of my circumstances and conditions, which has to include the possibility of suffering an attack at a very inopportune time.
Okay, so with all that being said, there’s not much more to the day; no more drama or pain.
After CC and the kids left, I asked for my pain medicine and planned to go to sleep. Unfortunately, my mind had some unrelenting fears it wanted to court but not divulge, so I have spent the next several hours wondering if I would see my wife and kids again, “will I die tonight” and other wonderful topics worthy of a sensational pity/fear party for one.
Morning cannot come too soon.
Sunday, November 12, 2006
I woke up in a better frame of mind today; less stressed and worried. I don’t know the cause of my fears from last night, but at least they aren’t present today.
CC came this morning and sat with me while we waited for the doctor to come by. During the time we waited we talked quite a bit, discussed our current situation with my work, her work, insurance and stuff like that. We got out for a couple of walks around the unit floor which is relaxing for me; just being with her changes my mind-frame and my spirit and joy comes back into my heart. While we continued to wait, she encouraged me to take a nap and I slept for a good 2 hours. I had no idea I’d sleep like that. While I was falling asleep I suffered several body jerks/muscle spasms which can be very disturbing, like a jolt or how’d you’d jump if startled. My issues with them besides the uncomforting of the jolt and the quick, snapping to consciousness, are that they often hurt my shoulder, arm and/or neck when they strike. They seem to hit each time I go to sleep no matter where I am, whether it’s a nap or a night’s sleep.
Anyway, after waking from the nap, we asked the nurse to page the doctor and shortly thereafter he came in and spent a good 15 to 20 minutes with us explaining what he believes has gone on and where we are now. I’ll try to bullet-point these, though CC probably has the more accurate recount of that conversation:
It is probable that I will be hospitalized until Tuesday or Wednesday
My blood pressure is becoming less volatile and more controlled
He believes that the Spironolactone has made a significant difference in my BP and what is being attempted is a rapid change-over from my “normal” blood pressure medicine to more calculated amounts of the Spironolactone.
He believes (as CC has from the beginning) that the blood pressure is directly related to the Hypokalemia and he explains that when the blood pressure is low, the body tries to kick up the pressure by pushing sodium and such into the blood and pushing out the potassium
He believes that even the slightest amount of saline could certainly trigger an attack duo to the evident fragile balance with my system.
The CT scan shows no tumors, which is good, though it has little to do with the adrenal glands continuing to screw up in my system, meaning that a tumor would have immediately explained the hyperaldosteronism but the lack of seeing one simply means that the adrenal glands are malfunctioning for other reasons, genetic or otherwise and still have to be controlled medically.
He anticipates and is recommending that more invasive tests be done to ascertain more specifically how the adrenal glands are functioning, one of which is running a very small tube into the adrenal vein and taking a direct sample of its production to determine the level of imbalance that they are responsible for.
After meeting with him, CC left to go pick up the kids and a few movies for us to watch as a family (Joshy or Missy sits beside me on the bed and cuddles up pretty close while we watch the movies. Missy seems to be very much the “Daddy’s girl” at this point and the cuddling helps her to relax from her current fears that I won’t be coming back from my stay here.) And CC got a couple for me to watch on my alone time.
Oh yeah, CC got an email from the neurologist we have been working with and he plans to come visit me tomorrow. That should be a good and hopefully informative meeting.
So that’s today, Sunday day and evening…
Sunday night/Monday morning
It’s now Monday morning, November 13, 2006 at 12:41 AM. About 11:00PM I asked the nurse for a sleeping pill since I had just previously taken some pain pills for the shoulder and lower back pain, and I wanted to go right to sleep…Well, I went right to sleep alright, right straight into a dream that was eerily familiar but moving in fast motion and no matter what I did in the dream, I could not slow my vision down or mellow out my mind. It was nearly hallucination in it’s realism. Everything felt like it was unstoppable and I tried to wake up a few times but couldn’t get out of the dream. Somehow, on one more attempt, my eyes opened and I saw the window blinds that face the hallway in the unit and I snapped back to reality that I was in the hospital and not in that horror-land that I couldn’t get away from, but I also realized instantly that it was the sleeping pill that brought it on and that I cannot go back to sleep until the pill has left most of my system. So, what am I doing now? I’m typing this at 12:57 AM, watching American Idol Rewind and just finished eating a banana, an apple and 2 mozzarella cheese sticks.
I believe that “regular” or un-induced nightmares are fairly easy to exit in most cases, meaning, I can identify them as a dream and can close them out, BUT nightmares that come after taking some kind of medicine or sleeping pill are painfully hard to close out or wake up from. This one I just had contained so many familiar faces and people that it blurred reality and fiction as quickly as it started and I couldn’t tell is I was awake or asleep most of the time. Wow. It was so hard to exit. I’m going to try the whole “sleep-thing” again now that it is 2:00 AM and see what happens.
Monday, November 13, 2006
This morning came with no after effects of this morning’s mind-games, thank God (truly).
CC came right after work this morning. It is remarkable to me how she brings light with her wherever she goes and coming to me brings me peace and rest, just seeing her.
We talked more and made some phone calls for hooking up with Kaiser’s Nutrition Department and Member Services. We also put a call in to Aflac regarding my disability. While she was here my neurologist came in to see me and it was a very helpful meeting with him. He is certain that I have two very rare conditions (Hyperaldosteronism and HKPP) and feels it is likely that I may have issues with Hyperkalemia as well as Hypokalemia, in that I suffered from excessive potassium in my system as well. He feels that my system is fairly unstable versus a normal body which manages itself chemically and such internally. Mine does not manage itself and has become increasingly unstable requiring closer attention to my wellbeing. He completely agrees that I must get the Cardy meter even if Kaiser won’t purchase it. He feels it will be a critical part of our puzzle in keeping me in balance. He was also concerned at my excessive sweating (I now have had to have my bed sheets changed 3 to 4 times a day due to my sweating through the linens. I have had to change gowns 3 to 5 times a day as well since I have been getting up and around on my own) and cold limbs, but doesn’t know what that is at this point. He also let us know he had a lengthy conversation with my Nephrologist, Dr. Stewart, who has been managing my BP meds. We are very encouraged by this because we believe one of the real keys for getting through this faster than not, is to have the doctors in communication with each other and trying to work together.
Shortly after he left my new doctor, Dr. Mitchell, came in who took over my care from Dr. Hussa, who worked the weekend. We got caught up with him and he noted that I’m now one just TWO BP meds; Spironolactone and Atenolol. I came in taking, like 5 or something like that. Anyway, he expects me to be able to leave tomorrow or Wednesday if my BP remains in the “normal” range. Light at the end of this particular tunnel! The meeting and introduction was very cool for both CC and me. We are making progress.
After he left, CC left to go and pick up the kids and grab dinner and bring them all back to see me. While she was gone, my Physical Therapist came back and we did some exercises and went for a walk, WITHOUT the use of the cane, thank you very much. When we returned, Sara Dills was at my room door and she and I talked for 15 minutes or so before she had to leave. It was SO good to see her and have a visitor. She’s one of my colleagues at work, with whom I work with each weekend and for all dramatic events and such (being that she’d the Director for Worship Arts). It was great to see her. She was unaware of what happened on Wednesday even though she attended the same meeting that CC and I were attending when this whole thing began.
When CC returned with the kids, she brought me a couple more movies and what Missy had said she wanted to bring me today; a frozen yogurt. I enjoyed about a third of the yogurt and began to get cold so I stopped eating it and decided to go for a walk to warm up…Wrong call. Though nothing substantial came of it, due to my sweating and remaining in bed, my gown was again wet and the combination of having eaten the frozen yogurt with the cool air on the gown began to give me shivers. I took the blanket CC had brought me from home and she helped me put it over my shoulders and we began to walk and I made it a short distance when I knew I was going to have chills shortly, so we returned to the room and I put the blanket around me and a nurse came in to change my bedding. Once the bedding was changed, I got back into bed and had the blanket still around me and in a matter of a minute or two, my body temp was back to normal and rising again. I’m like my own microwave oven…
I watched one of the movies she brought the day before, “Click”, which ended just as she and the kids arrived today. The second movie she brought “Underworld: Evolution”, was one I had asked for and though most of my friends now wouldn’t watch it and I KNOW CC would never watch it (it’s about vampires and lycans i.e. werewolves), it touches that part of me from my youth that really enjoyed D&D and fantasy role play. The movie is shot incredibly and it is impressively produced and directed. I was going to watch it tonight, but thought better of it since I had so much fun with the nightmare from a previous evening.
It was a quiet night after the family left and I called it a night after watching some more TV.
Tuesday, November 14, 2006
I just finished watching “Underworld” and the doctor came in to let me know that my potassium has remained between 4.5 and 4.7 and that I am taking 50mg of Atenolol morning and night and now on 100mg of Spironolactone morning and night and THAT’S IT! How COOL! He said that I can go home today! I asked for the caution light numbers for the BP and he said if it goes into the low 100’s or above the 140’s. Also that if it does go there, to just head in to Emergency because it is very likely that I will end up there shortly thereafter. We MUST get the potassium meter ASAP to avoid as much of this as possible. With it, we can monitor my potassium and better know when to administer it and when not to take it. If an attack begins, theoretically, CC can get a reading from me and know within a minute or so as to my K+ level.
I’m so pleased to close this chapter of “medical visitation”.
It’s my intent to post this on the Blog site that I know has been vacant now for a week, so that folks can learn of what has gone on these last 6 days and I won’t have to email everyone the same thing or bother folks with it who don’t necessarily want to know.
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