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
Tuesday, November 14, 2006
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.
Tuesday, November 07, 2006
Challenging Tuesday
Tuesday November 7-
Today was as hard as Monday, I think.
I realized that part of my frustration with yesterday was that Kaiser Genetics department called yesterday to say that my gene mutation is not on their file list and thus they cannot say for certain which strain I have. It’s ok on one level but at the same time, you want to know specifically what it is if you are going to use medicine to control it. So it will be diet, wisdom and prayer controlling the disease now.
I was in a meeting today where I was taking notes and realized there was a small pool of sweat gathered where my arm was resting on the table while I wrote. Besides being gross, I KNOW that’s not right. CC wanted me to check my weight when I got home and I’ve lost 5 more pounds since a couple weeks ago…which again, is cool on one side of it, but is not ok on another side. It’s starting to concern me.
It’s some of the simple things at work that frustrate me the most. My boss tells me to let the stuff go and not be anxious about things, but that is very difficult for me. I take pretty easy issue with things I feel or believe are unjust or unfair. I was tasked with a job which I was unable to fully complete because of issues outside my control. I can’t get much into detail for fear some folks from work take an interest in this, I guess. Anyway, work was very frustrating today though I was able to succeed in accomplishing some of my tasks.
It’s been a couple tough days and I’m hoping for a decent attitude to return shortly. Sorry to drag on and be fragmented in thought…it’s kind of how I am now, I guess.
Peace
w
~~~~~~~~~~~~~~~~~~
B=3 eggs
L=1.5 apples and 2 bananas
D=pot roast with small potatoes and carrots. (seriously GOOD)
Today was as hard as Monday, I think.
I realized that part of my frustration with yesterday was that Kaiser Genetics department called yesterday to say that my gene mutation is not on their file list and thus they cannot say for certain which strain I have. It’s ok on one level but at the same time, you want to know specifically what it is if you are going to use medicine to control it. So it will be diet, wisdom and prayer controlling the disease now.
I was in a meeting today where I was taking notes and realized there was a small pool of sweat gathered where my arm was resting on the table while I wrote. Besides being gross, I KNOW that’s not right. CC wanted me to check my weight when I got home and I’ve lost 5 more pounds since a couple weeks ago…which again, is cool on one side of it, but is not ok on another side. It’s starting to concern me.
It’s some of the simple things at work that frustrate me the most. My boss tells me to let the stuff go and not be anxious about things, but that is very difficult for me. I take pretty easy issue with things I feel or believe are unjust or unfair. I was tasked with a job which I was unable to fully complete because of issues outside my control. I can’t get much into detail for fear some folks from work take an interest in this, I guess. Anyway, work was very frustrating today though I was able to succeed in accomplishing some of my tasks.
It’s been a couple tough days and I’m hoping for a decent attitude to return shortly. Sorry to drag on and be fragmented in thought…it’s kind of how I am now, I guess.
Peace
w
~~~~~~~~~~~~~~~~~~
B=3 eggs
L=1.5 apples and 2 bananas
D=pot roast with small potatoes and carrots. (seriously GOOD)
Monday, November 06, 2006
Monday feeling like a Monday.
Monday, November 06
I’m writing from work briefly.
It’s been a strange day so far; moods seem stressed kinda everywhere, which makes me immediately suspicious of my own perspectives being twisted, you know?
I’ve got a rehearsal tonight in the WC for the SML band in its new configuration. I’m going to give them wedges instead of In Ears since they aren’t going to be using In Ears over in the FLC where they play each weekend. They are used to wedges and until the actual service moves locations sometime this winter, they might as well stay with wedges.
Breakfast was 3 eggs again and lunch was a salad with thousand Island and celery.
I’m in a funky mood I guess and it’s not looking to change any time soon.
Good note from this morning was getting in touch with Medic Alert and getting the bracelet ordered. My parents offered to cover the bracelet cost (I think I’m set for birthday and Christmas for a couple years.) Serious blessing for us. There’s one of you who knows that your offer to help leaves me humbled and thankful to have a friend like you. You know who you are.
My buddy Josh, our Youth Pastor, just came in to help me set up my KVM and second computer I have to do video editing on. Just got 2 19” screens for the editing and the KVM switch box and need him to make it all work. Uh, I got the audio working on it, thank you very much…let’s remember that audio’s my gig, not so much computers, k? Okay.
So we’ve got to do some cabling and such and I’ll write some more tonight and maybe flesh-out what’s causing my bad mood.
--------------------------------------------
It's 9:50 PM and Missy's just finished her shower...she had homework that had to get completed tonight, so she had to say up late to do it.
Turns out the KVM I bought won’t do what it said it would do, so Josh is going to find me the right one on-line. He SO rocks. But I did get my webcam working and the AUDIO to it too. I sent CC a video attached to the email and I am AMAZED at the quality. Technology is astounding.
Rehearsal was long tonight for me, even though the rehearsal itself ended early...it just felt long. I'm guessing my mood is reflective to my current state of mind which is overwhelmed and hopeless at the moment.
Found out today that a memorial has been planned for tomorrow late morning. That always brings a smile to one's face, no? *bleh*. Sorry.
My X-ray of my neck came back positive for degeneration which helps explain the neck pain I've been feeling which is different from the muscle pain; I can tell the two apart. Whine, whine, whine...
On an up note, Sean O’Brien and his new bride brought our white couch back to us, which is exciting and wonderful; I have actually missed it for some time now. We've been using Nana's couch from her house, but it hurts my back and legs to even sit on it
Yay! I have my couch back.
We're keeping both of them for the time being.
While I was writing part of this, my email alert came up to let me know that someone placed a video for sale on there called "The Rippington's Live in LA" which I have been searching for for almost 10 years!!!! The bid was 9.99 and I plan to follow it out to $15 or $20 as a bday present to myself...I'll have to be creative on how to make it happen, but I've been after this for so long, I just have to see if I can score it.
Well, Missy's out of her shower and in bed, so I'm off to tuck her in and then close out this day with HOPEFULLY some restful slumber.
peace
w
I’m writing from work briefly.
It’s been a strange day so far; moods seem stressed kinda everywhere, which makes me immediately suspicious of my own perspectives being twisted, you know?
I’ve got a rehearsal tonight in the WC for the SML band in its new configuration. I’m going to give them wedges instead of In Ears since they aren’t going to be using In Ears over in the FLC where they play each weekend. They are used to wedges and until the actual service moves locations sometime this winter, they might as well stay with wedges.
Breakfast was 3 eggs again and lunch was a salad with thousand Island and celery.
I’m in a funky mood I guess and it’s not looking to change any time soon.
Good note from this morning was getting in touch with Medic Alert and getting the bracelet ordered. My parents offered to cover the bracelet cost (I think I’m set for birthday and Christmas for a couple years.) Serious blessing for us. There’s one of you who knows that your offer to help leaves me humbled and thankful to have a friend like you. You know who you are.
My buddy Josh, our Youth Pastor, just came in to help me set up my KVM and second computer I have to do video editing on. Just got 2 19” screens for the editing and the KVM switch box and need him to make it all work. Uh, I got the audio working on it, thank you very much…let’s remember that audio’s my gig, not so much computers, k? Okay.
So we’ve got to do some cabling and such and I’ll write some more tonight and maybe flesh-out what’s causing my bad mood.
--------------------------------------------
It's 9:50 PM and Missy's just finished her shower...she had homework that had to get completed tonight, so she had to say up late to do it.
Turns out the KVM I bought won’t do what it said it would do, so Josh is going to find me the right one on-line. He SO rocks. But I did get my webcam working and the AUDIO to it too. I sent CC a video attached to the email and I am AMAZED at the quality. Technology is astounding.
Rehearsal was long tonight for me, even though the rehearsal itself ended early...it just felt long. I'm guessing my mood is reflective to my current state of mind which is overwhelmed and hopeless at the moment.
Found out today that a memorial has been planned for tomorrow late morning. That always brings a smile to one's face, no? *bleh*. Sorry.
My X-ray of my neck came back positive for degeneration which helps explain the neck pain I've been feeling which is different from the muscle pain; I can tell the two apart. Whine, whine, whine...
On an up note, Sean O’Brien and his new bride brought our white couch back to us, which is exciting and wonderful; I have actually missed it for some time now. We've been using Nana's couch from her house, but it hurts my back and legs to even sit on it
Yay! I have my couch back.
We're keeping both of them for the time being.
While I was writing part of this, my email alert came up to let me know that someone placed a video for sale on there called "The Rippington's Live in LA" which I have been searching for for almost 10 years!!!! The bid was 9.99 and I plan to follow it out to $15 or $20 as a bday present to myself...I'll have to be creative on how to make it happen, but I've been after this for so long, I just have to see if I can score it.
Well, Missy's out of her shower and in bed, so I'm off to tuck her in and then close out this day with HOPEFULLY some restful slumber.
peace
w
Sunday, November 05, 2006
It was certainly a Sunday...
Hey there-
I got very little sleep last night, not certain why. I couldn't get into a deep sleep which was annoying but I was good to go when the alarm went off at 5:00 AM. I’m really glad I went in last night to get ready for this morning; I would have been hosed if I hadn’t. I was seriously tired from the morning and ate 2 apples and a banana and drank a couple bottles of water to boot. Breakfast was 3 eggs, which seems to be working find for me. We were initially concerned about having the eggs, but if not, then truly, WHAT ELSE??
Our new band configuration has bass and guitar up behind keys and drums which leaves nice open real estate on the chancel floor. I got word last week that the SML band will be switching off Monday night rehearsals in the WC so that every Monday is a rehearsal and with the new configuration, I can set up both bands with no problem and not have to strike one for the other for the most part.
Services went alright, though there were some audio oddities that I think are due to the new flooring. More about that when I’m NOT likely to dose off while typing.
After services we got a fair amount done in the back yard including moving the boat to a different location and cleaning it out thoroughly. I finished repairing flat tires on 3 of the bikes in the garage. Funny how that stuff comes back from memory so quickly. I felt useful again, which unfortunately does mean something to me right now. That will get better I know, I know…
Yesterday I got a call from one of my dearest friends, somebody I haven’t seen since, around ‘91/’92 or something like that. He and his family moved to Australia, where is originally from. We don’t get to talk much, but hearing his voice just brings a big grin to my face. He was one of my very best friends while I lived in Garden Grove/Huntington Beach time while down in Southern Cal. He and I share a love for the Eagles, sweet acoustic guitars, appropriate relaxing “beverages” when hangin with company and true friends. God gave me and CC a sincere and true gift when He gave us the friendship with Neil and his wife Bobby. They’ve 3 kids; Becca, Bridgette and Christopher. It’s been that long since I’ve written their names, I may have spelled one or two wrong…but I remember them specifically.
More bouts with the weird sweating and soaking of the T-shirt with cold. Clammy hands and such. I’m just bringing a couple shirts now to work so I can change part way through.
Well, it’s 9:30 and I’m dozing off while I try to type. That’s my cue-
More tomorrow…
peace
w
~~~~~~~~~~~~~~~~~~~~~~~~
B: 3 eggs
L: 2 burger patties/small ketchup
D: meatballs in marinara sauce
Snacks: 4 apples, 2 bananas, handful of candy-corn
~~~~~~~~~~~~~~~~~~~~~~~~
I got very little sleep last night, not certain why. I couldn't get into a deep sleep which was annoying but I was good to go when the alarm went off at 5:00 AM. I’m really glad I went in last night to get ready for this morning; I would have been hosed if I hadn’t. I was seriously tired from the morning and ate 2 apples and a banana and drank a couple bottles of water to boot. Breakfast was 3 eggs, which seems to be working find for me. We were initially concerned about having the eggs, but if not, then truly, WHAT ELSE??
Our new band configuration has bass and guitar up behind keys and drums which leaves nice open real estate on the chancel floor. I got word last week that the SML band will be switching off Monday night rehearsals in the WC so that every Monday is a rehearsal and with the new configuration, I can set up both bands with no problem and not have to strike one for the other for the most part.
Services went alright, though there were some audio oddities that I think are due to the new flooring. More about that when I’m NOT likely to dose off while typing.
After services we got a fair amount done in the back yard including moving the boat to a different location and cleaning it out thoroughly. I finished repairing flat tires on 3 of the bikes in the garage. Funny how that stuff comes back from memory so quickly. I felt useful again, which unfortunately does mean something to me right now. That will get better I know, I know…
Yesterday I got a call from one of my dearest friends, somebody I haven’t seen since, around ‘91/’92 or something like that. He and his family moved to Australia, where is originally from. We don’t get to talk much, but hearing his voice just brings a big grin to my face. He was one of my very best friends while I lived in Garden Grove/Huntington Beach time while down in Southern Cal. He and I share a love for the Eagles, sweet acoustic guitars, appropriate relaxing “beverages” when hangin with company and true friends. God gave me and CC a sincere and true gift when He gave us the friendship with Neil and his wife Bobby. They’ve 3 kids; Becca, Bridgette and Christopher. It’s been that long since I’ve written their names, I may have spelled one or two wrong…but I remember them specifically.
More bouts with the weird sweating and soaking of the T-shirt with cold. Clammy hands and such. I’m just bringing a couple shirts now to work so I can change part way through.
Well, it’s 9:30 and I’m dozing off while I try to type. That’s my cue-
More tomorrow…
peace
w
~~~~~~~~~~~~~~~~~~~~~~~~
B: 3 eggs
L: 2 burger patties/small ketchup
D: meatballs in marinara sauce
Snacks: 4 apples, 2 bananas, handful of candy-corn
~~~~~~~~~~~~~~~~~~~~~~~~
Saturday, November 04, 2006
Saturday, November 4th, 2006
Evenin'-
Musical background is G3 video concert live...Satriani shredding at the moment. Gah, he's amazing. And then there's Stu Ham on bass...*sigh*
CC worked today and I took Josh to his soccer game in the late morning. On that note, everything went well except at the very end of the game, Josh was sitting out the last quarter of the game and kicking a ball around with a team mate and I asked him to get his soccer ball which he said he didn't know where it was. Longer story short, I asked him then told him to go find it and he lied when he said he'd looked everywhere and then continued to play with his friend. As I readied to look for it, he took off and went and found it where he said he's already looked. I hate and I mean detest lying. It struck strange that he would lie about something as simple as that. So, no TV/computer until next Friday. We'll see if it has an impact, if not I know what will...Lying is one thing I'm NOT patient with. So that set me in a frustrated mood which was hard to shake.
On top of that start to the morning/afternoon, my weird symptoms were back (full sweating of torso and head and thighs and very cold hands, feet and arms. When CC got home she suggested taking a potassium pill, which I did, and the symptoms backed off. Still weird to me.
I had to go in to work, yes on my day off, because I didn't want tomorrow morning to be hell, and it was a very good thing I did because there was much to do, more than I expected. While I was there, the sweating began again in full force and got so it was steaming up my glasses and dripping from them. When I got home I took more potassium and it seems better.
After getting home I've taken it pretty easy and laid low. My goal is to get to bed early again tonight so 5:00 AM doesn't hurt as much as it might otherwise. Tomorrow will be the first I've mixed since mid September. I covered a rehearsal on Monday night, but that doesn't count as mixing. That's more an extended line check.
Well, that's probably it for tonight. I'll take the meds and call it an evening.
peace
w
Musical background is G3 video concert live...Satriani shredding at the moment. Gah, he's amazing. And then there's Stu Ham on bass...*sigh*
CC worked today and I took Josh to his soccer game in the late morning. On that note, everything went well except at the very end of the game, Josh was sitting out the last quarter of the game and kicking a ball around with a team mate and I asked him to get his soccer ball which he said he didn't know where it was. Longer story short, I asked him then told him to go find it and he lied when he said he'd looked everywhere and then continued to play with his friend. As I readied to look for it, he took off and went and found it where he said he's already looked. I hate and I mean detest lying. It struck strange that he would lie about something as simple as that. So, no TV/computer until next Friday. We'll see if it has an impact, if not I know what will...Lying is one thing I'm NOT patient with. So that set me in a frustrated mood which was hard to shake.
On top of that start to the morning/afternoon, my weird symptoms were back (full sweating of torso and head and thighs and very cold hands, feet and arms. When CC got home she suggested taking a potassium pill, which I did, and the symptoms backed off. Still weird to me.
I had to go in to work, yes on my day off, because I didn't want tomorrow morning to be hell, and it was a very good thing I did because there was much to do, more than I expected. While I was there, the sweating began again in full force and got so it was steaming up my glasses and dripping from them. When I got home I took more potassium and it seems better.
After getting home I've taken it pretty easy and laid low. My goal is to get to bed early again tonight so 5:00 AM doesn't hurt as much as it might otherwise. Tomorrow will be the first I've mixed since mid September. I covered a rehearsal on Monday night, but that doesn't count as mixing. That's more an extended line check.
Well, that's probably it for tonight. I'll take the meds and call it an evening.
peace
w
Friday, November 03, 2006
Friday, November 3, 2006
Good morning-
I got to bed pretty early last night which meant that about 2:30 or so, I woke up because I have usually been getting about 6 hours of sleep and I was sleeping a bit before 9:00 PM.
When I got up this AM I felt pretty good, rejuvenated in a way.
CC is working today so I took the kids to school which is a fun time for me. They like the same music I like and like to listen to it at a “moderate” volume like me too…When we got about half way to school, Missy reminded me it was time to pray so we took the next few minutes with each of us taking turns praying. Sometimes they both remember and sometimes just me. It’s a great way to start the day; listening to your children speak to God.
CC and Nana and Papa (my dad) spent yesterday knocking out the back yard work and it looks great. Dad moved the boat to the very back of the yard since they removed the hedge. We have the neighborhood clean up in a couple weeks and we will be set for it. The sucky part is I can’t do so much of what I used to do that some of the really laborious work has to be done by CC or others and that’s a real ego shot and frustration because I believe in and have always done my own work when humanly possible. Grrrrr.
I had funky symptoms again this morning and yesterday and some days past as well; sudden very evident sweating on my torso and head and thighs, but my lower legs, arms form the elbow down and my hands are as cold as a glass window on a winter day. It was difficult to type at the end of the day yesterday because my fingers didn’t have the dexterity or speed to move to the keys my mind told them to go to. Weird. CC gave me some liquid potassium last evening at work and within about 15 minutes I have warmth back in my hands and arms and legs and feet. I didn’t take any potassium this morning because I have no idea what my K+ (K+ stands for potassium) level is right now and I don’t want to max out on it either. My last test for it was beginning of the week and it was 5.2 which is one point below what is considered high potassium. Feast or famine, I guess.
My weight is down to 230 now and I’ve gone down one pant size in the waist !!! Serious cool, except all my jeans and slacks are 42 not the 40 I am now. From where I’ve been, this is a good problem to have. I was at 260 in July and thanks to CC’s hunch to pick up the blood type shopping guide and learning about it, I’ve lost the weight just because I’m eating the foods that my body can digest better and more efficiently and not eating the ones which stay in my system for a long time. Of course, combine that with the “Avoid these foods” regiment that comes from the HKPP and my *choices* became slim to none for how I used to eat.
I’ve completely cut out all pork, regular pasta, soy sauce, large helpings, corn, regular flour, white bread, high sodium foods and meals, etc. It’s been frustrating at times but the results are clear to me and worthy.
So, on to today…Many errands to run which means loud music in the car except…I think I’ll bring Annie with me so I’ll keep the music to a dull roar, so to speak.
Peace and blessings; I’ll plan to write some more tonight and post some more pics too-
peace
w
------------------------------------------ Friday afternoon---------------------------------------------------
I got to bed pretty early last night which meant that about 2:30 or so, I woke up because I have usually been getting about 6 hours of sleep and I was sleeping a bit before 9:00 PM.
When I got up this AM I felt pretty good, rejuvenated in a way.
CC is working today so I took the kids to school which is a fun time for me. They like the same music I like and like to listen to it at a “moderate” volume like me too…When we got about half way to school, Missy reminded me it was time to pray so we took the next few minutes with each of us taking turns praying. Sometimes they both remember and sometimes just me. It’s a great way to start the day; listening to your children speak to God.
CC and Nana and Papa (my dad) spent yesterday knocking out the back yard work and it looks great. Dad moved the boat to the very back of the yard since they removed the hedge. We have the neighborhood clean up in a couple weeks and we will be set for it. The sucky part is I can’t do so much of what I used to do that some of the really laborious work has to be done by CC or others and that’s a real ego shot and frustration because I believe in and have always done my own work when humanly possible. Grrrrr.
I had funky symptoms again this morning and yesterday and some days past as well; sudden very evident sweating on my torso and head and thighs, but my lower legs, arms form the elbow down and my hands are as cold as a glass window on a winter day. It was difficult to type at the end of the day yesterday because my fingers didn’t have the dexterity or speed to move to the keys my mind told them to go to. Weird. CC gave me some liquid potassium last evening at work and within about 15 minutes I have warmth back in my hands and arms and legs and feet. I didn’t take any potassium this morning because I have no idea what my K+ (K+ stands for potassium) level is right now and I don’t want to max out on it either. My last test for it was beginning of the week and it was 5.2 which is one point below what is considered high potassium. Feast or famine, I guess.
My weight is down to 230 now and I’ve gone down one pant size in the waist !!! Serious cool, except all my jeans and slacks are 42 not the 40 I am now. From where I’ve been, this is a good problem to have. I was at 260 in July and thanks to CC’s hunch to pick up the blood type shopping guide and learning about it, I’ve lost the weight just because I’m eating the foods that my body can digest better and more efficiently and not eating the ones which stay in my system for a long time. Of course, combine that with the “Avoid these foods” regiment that comes from the HKPP and my *choices* became slim to none for how I used to eat.
I’ve completely cut out all pork, regular pasta, soy sauce, large helpings, corn, regular flour, white bread, high sodium foods and meals, etc. It’s been frustrating at times but the results are clear to me and worthy.
So, on to today…Many errands to run which means loud music in the car except…I think I’ll bring Annie with me so I’ll keep the music to a dull roar, so to speak.
Peace and blessings; I’ll plan to write some more tonight and post some more pics too-
peace
w
------------------------------------------ Friday afternoon---------------------------------------------------
So it’s mid-afternoon and these weird symptoms of major sweating and freezing hands, legs and arms is getting pretty old. I mean, my glasses are fogging up…how ridiculous is that? CC has gone to go get her mom from the beauty salon and then I will go with her to get the kids from school (we have Noah and Anna with us today too until the late afternoon) and after getting the kids we are heading to Kaiser to get some blood drawn and see if anything is reflected as abnormal from the potassium draw.
Something’s not right but we don’t know what it is.
While CC was at my office with the kids last night, she took it upon herself to re-arrange the room per a discussion I had had with a colleague and I thought the idea was great, but couldn’t do the actual work to make the changes. CC knocked it out in a matter of a few minutes and the office looks great now.
Well, we’ll see what happens with the labs. My primary emailed us back that he put in a “standing order” for potassium draw whenever we want it. I tell you, being able to email our doctors is excellent! And, not only do you get some faster communications happening, but everything you email becomes part of your record or file at the hospital. It’s a VERY effective way to make certain specific issues or concerns are documented and available for the practitioners to read. It’s like “going on record” each time you communicate and that’s been great for us.
Well, I guess there will be more later…peace.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Yesterday’s (Thursday) breakfast was 3 eggs and hot tea
Lunch was Chicken Caesar Salad from Chili’s with Iced tea
Dinner was chicken and dumpling soup of which I had a medium sized bowl with 2/3 chicken to 1/3 dough dumplings
Thursday, November 02, 2006
Coming to Friday...
This one is short for the moment so CC can use the laptop before she goes to bed.
A couple incidents today with sweating like crazy and weakness and ice cold hands/arms and feet. We couldn't get through to a doc, so I''l try tomorrow.
We did the liquid potassium after the first issue with the sweating and it did resolve it, so...I don't know what I have such a screwed up body...just do, I guess.
I'll write more tomorrow morning.
peace
w
A couple incidents today with sweating like crazy and weakness and ice cold hands/arms and feet. We couldn't get through to a doc, so I''l try tomorrow.
We did the liquid potassium after the first issue with the sweating and it did resolve it, so...I don't know what I have such a screwed up body...just do, I guess.
I'll write more tomorrow morning.
peace
w
Wednesday, November 01, 2006
Time for some images...check back 'cause I'll be adding more as I go...I thnk...
Mr. Peter Gabriel at the NAB convention this year. Once in a lifetime shot for me.He co-owns SSL (Solid State Logic), a company that makes world reknown (sp?) mixing desks, both analog and digital. FOPC purchased one of their digital boards, a C100, for the Worship Center sound remodel of 2 years ago.
Mr. Deny Savage, Celine Dion's FOH engineer since she began touring.
My buddy Craig Fetter (on the right) and I were "roomies" while in Vegas for the NAB show and we had the killer opportunity to check out Caeser's Palace Theater where Celine Dion currently does her weekly concert/show from. Like the year before, we were given a tour of the facility and had the honor of watching a master craftsman (Deny) while he mixed audio for the video demo for the group of us there for the tour. All he had to do was hit the "play" button and the show was beautifully mixed (via him previously) but as it played, he still had to have his hands on the faders, making subtle changes here and there.
Craig and I were really blessed by the time spent in there and watching him work.
Wow.
I will find some more shots (I don't have many on this laptop) and will share them in the next few days,,,
Peace
w
It's been a Wednesday...
Well it's been a pretty fair day, all things considered. I am feeling the best today that I have felt since my visit to Hotel Kaiser. I have more energy and thanks to the methadone, I have less noticeable pain for most of the day. I won’t over-do it, but at least it’s back to being tempting...
Tomorrow has quite a bit of work to accomplish on campus so it will be a busy day I’m sure.
Last night I woke up around midnight in the process of recognizing an attack of chills coming on and Bam! They hit full swing for I don't know how long. Brutal effects with the complete tensing and spasm through-out my body, but most painful in the back of my thighs where they began to cramp up and release over and over. All I can do is shake uncontrollably (kind of like the people who exaggerate the cold on TV and their teeth chatter and they shake like their freezing) and breathe through them until my body temp gets back to normal or my body simply gives in and they stop from my shear exhaustion. I woke up seriously sore this morning but I knew what it was from and at least they came and went. My dad suffers from them sometimes but I don’t know if it is independently hereditary or if it is an extension of the Periodic Paralysis affects on my muscles. Whichever it is, it sucks.
I got a call from Kaiser regarding them purchasing a “Cardy Meter” (a meter for measuring potassium) and they will not get it for us. We are on our own, but we figured that was coming due to it not being FDA approved yet and the fact that HKPP is not researched by most ANYONE in Kaiser. Once we pursue a potassium meter then I can get a much more accurate reading of my normal K+ level and can know what drop in numbers constitutes an attack.
Speaking of potassium, CC went by the pharmacy and got a small spill proof plastic bottle to hold a reviving dose of liquid potassium for me to carry with me. How dramatic is that? Sheesh...It’s difficult to right about all this stuff without me reading it through and seeing drama written all through it. Yuck. Just know that the writings on here are NOT intended for dramatic purposes but matter of fact accounting and venting and such. In many ways, hopefully this will serve as a positive tool in my process of getting a handle on this disease and prove helpful.
Histroy recorded.
We have a CT scan scheduled for a couple weeks from now to see if there is anything visible on the adrenal glands that doesn’t belong. Oh yeah, I also forgot to note that we did a blood draw a few weeks back that was sent off, through Kaiser’s Genetics Department, to Harvard Medical to see if they can identify the specific gene that mutated to cause the HKPP. They said that about 70% have been identified but not to get our hopes up on it. The benefit of knowing the specific strand or gene is that for the ones they’ve identified, they have figured out some medicine which helps to prevent the attacks. We are doing everything we can from this end and any help from the medical field will be warmly received.
On the very cool front, my dad came up this morning to help us with our back yard which needs some attention. Between him and CC, they cut down half of the large hedge in our back yard. CC and I have a vision for the back yard and very little chance to realize it with schedules and life the way it is, so dad’s coming up kicked it into forward motion and much progress was made today.
Completely OFF topic and slightly random; it was pretty interesting seeing an old friend today who is checking out a ministry position at FOP. Once I know it’s okay, and if I remember, I’ll note him on the blog, but I don’t want him compromised. Ooh...the mystery.
I also had the opportunity to spend a block of time with our Pastor to Youth, Josh Flood. We went to Fry’s in Sac to check out some computer flat panels and some other stuff. I had such a great time talking with him and listening as well. He’s got such a wonderful heart, refreshing vision and perspective. He’s got my complete respect. I consider him a good friend even though we don’t have much opportunity to hang out. He’s quite the video guy too. He’s got a very good eye.
So I’m writing this from my bed with my laptop while listening to Siouxie and the Banshees “Peek-a-boo” and watching Joshy who’s sitting on the bed with me playing his plastic guitar to the songs. How cool is that? He enjoys quiet bands like...Whitesnake, Siouxie et all, Van Halen, Sammy Hagar, TNT...you know...mellow bands.
He’s conservative like me.
He asked me tonight if I would video tape him singing and playing guitar to the COPS theme song, while he’s dressed as his version of a cop which includes a Batman T-Shirt. I dig him.
So many folks have emailed about the blog, it has been very, very cool to hear from each of you. It was far more than I thought would come out of making this available to you and is such a blessing to hear from you all. Truly. Your love and support is such a blessing, you have no idea to what an extent. I think I will also combine the meal diary with this so I am not keep to records at the same time, so you will see B, L & D at the end of the entry for my records.
Well it’s time for closing down. We shall see what tomorrow holds...
Peace all-
w
~~~~~~~~~~~~~
B=3 eggs
L=2 grilled chicken breasts with whole grain rice
D=grilled steak, salad with thousand.
Tomorrow has quite a bit of work to accomplish on campus so it will be a busy day I’m sure.
Last night I woke up around midnight in the process of recognizing an attack of chills coming on and Bam! They hit full swing for I don't know how long. Brutal effects with the complete tensing and spasm through-out my body, but most painful in the back of my thighs where they began to cramp up and release over and over. All I can do is shake uncontrollably (kind of like the people who exaggerate the cold on TV and their teeth chatter and they shake like their freezing) and breathe through them until my body temp gets back to normal or my body simply gives in and they stop from my shear exhaustion. I woke up seriously sore this morning but I knew what it was from and at least they came and went. My dad suffers from them sometimes but I don’t know if it is independently hereditary or if it is an extension of the Periodic Paralysis affects on my muscles. Whichever it is, it sucks.
I got a call from Kaiser regarding them purchasing a “Cardy Meter” (a meter for measuring potassium) and they will not get it for us. We are on our own, but we figured that was coming due to it not being FDA approved yet and the fact that HKPP is not researched by most ANYONE in Kaiser. Once we pursue a potassium meter then I can get a much more accurate reading of my normal K+ level and can know what drop in numbers constitutes an attack.
Speaking of potassium, CC went by the pharmacy and got a small spill proof plastic bottle to hold a reviving dose of liquid potassium for me to carry with me. How dramatic is that? Sheesh...It’s difficult to right about all this stuff without me reading it through and seeing drama written all through it. Yuck. Just know that the writings on here are NOT intended for dramatic purposes but matter of fact accounting and venting and such. In many ways, hopefully this will serve as a positive tool in my process of getting a handle on this disease and prove helpful.
Histroy recorded.
We have a CT scan scheduled for a couple weeks from now to see if there is anything visible on the adrenal glands that doesn’t belong. Oh yeah, I also forgot to note that we did a blood draw a few weeks back that was sent off, through Kaiser’s Genetics Department, to Harvard Medical to see if they can identify the specific gene that mutated to cause the HKPP. They said that about 70% have been identified but not to get our hopes up on it. The benefit of knowing the specific strand or gene is that for the ones they’ve identified, they have figured out some medicine which helps to prevent the attacks. We are doing everything we can from this end and any help from the medical field will be warmly received.
On the very cool front, my dad came up this morning to help us with our back yard which needs some attention. Between him and CC, they cut down half of the large hedge in our back yard. CC and I have a vision for the back yard and very little chance to realize it with schedules and life the way it is, so dad’s coming up kicked it into forward motion and much progress was made today.
Completely OFF topic and slightly random; it was pretty interesting seeing an old friend today who is checking out a ministry position at FOP. Once I know it’s okay, and if I remember, I’ll note him on the blog, but I don’t want him compromised. Ooh...the mystery.
I also had the opportunity to spend a block of time with our Pastor to Youth, Josh Flood. We went to Fry’s in Sac to check out some computer flat panels and some other stuff. I had such a great time talking with him and listening as well. He’s got such a wonderful heart, refreshing vision and perspective. He’s got my complete respect. I consider him a good friend even though we don’t have much opportunity to hang out. He’s quite the video guy too. He’s got a very good eye.
So I’m writing this from my bed with my laptop while listening to Siouxie and the Banshees “Peek-a-boo” and watching Joshy who’s sitting on the bed with me playing his plastic guitar to the songs. How cool is that? He enjoys quiet bands like...Whitesnake, Siouxie et all, Van Halen, Sammy Hagar, TNT...you know...mellow bands.
He’s conservative like me.
He asked me tonight if I would video tape him singing and playing guitar to the COPS theme song, while he’s dressed as his version of a cop which includes a Batman T-Shirt. I dig him.
So many folks have emailed about the blog, it has been very, very cool to hear from each of you. It was far more than I thought would come out of making this available to you and is such a blessing to hear from you all. Truly. Your love and support is such a blessing, you have no idea to what an extent. I think I will also combine the meal diary with this so I am not keep to records at the same time, so you will see B, L & D at the end of the entry for my records.
Well it’s time for closing down. We shall see what tomorrow holds...
Peace all-
w
~~~~~~~~~~~~~
B=3 eggs
L=2 grilled chicken breasts with whole grain rice
D=grilled steak, salad with thousand.
Subscribe to:
Posts (Atom)
In This Body: Living with HKPP through Faith and Love of family & community with Wade Odum This was recorded on March 19, 2024 On today...
-
4-23-2018 Well, hello there. Pushing towards 2 years of absence from my own blog...I'm frustrated that I haven't kept this ... -
Until I can get some newer music up on Sound Cloud, here is what's up there now, which includes some favorite Forthright demo tunes we r...
-
Wednesday, September 17, 2008 I'm behind again on posting...sorry. My focus has been around the house and with family more so than not,...