Wednesday, January 31, 2007
Current:
Today was not a particularly bad day, but it felt like just a day helping me move onto the next…if that makes sense. After charging my truck battery all night, I took my truck down to AAA in Sac off Folsom Rd to Carl (from the tech team) who works there, and he put it through the diagnostic paces. Turns out the alternator is not putting anything out, so it needs to be pulled and returned to Kragen. It’ll cost almost $350 for AAA to replace it (part and labor) so I’ll do that tomorrow myself, but the rest if the work, the approximately $2,500.00 worth of work, cannot be pursued. Bummer. I really like this truck but we can’t make it a project too or a $$ drain at this point in our lives. I’m bummed by that, but so appreciative of Carl and Madoli who took care of having my truck looked at and Madoli kept me company while I waited for the inspection to finish.
I guess it is time to look for a new mode of transportation as well…
Seriously worthy of note was having the chance to let the kids see their cousin Kirsten in Hungary via webcam this morning. CC and I got to see her yesterday but couldn't speak to her due to our bad mic. The kids were SERIOUSLY thrilled as were we!
We love you hon, see you very soon!!!
Turning to late this morning and this afternoon...
Some symptoms have crept back; lower back pain, more weakness on right side, extreme fatigue and I’ve come to realize another one (like I needed another one). It has been progressively difficult for me to maintain a visual focus whether driving or typing, without having to blink and re-orient my sightlines since November. I don’t understand it and it has come to concern me. Driving for any extended period of time is proving difficult for me. With all the BS going on with Kaiser now, I don’t feel like I have anyone to bring THIS to as well. Driving home was requiring my re-focus about every minute while driving (I tried to time it) and that becomes very, very tiring and I think that is why I become increasingly tired when I drive; I’m making my mind and eyes work extra hard just to do simple exercises. Prayers on that are truly appreciated.
I took a nap for a couple hours after 3:30 and found it very difficult to get up from. I’m aware of CC’s concern to some level. Her concern is my concern. Sounds simple but is true.
I’ve learned more on the UCSF side; Dr. Ralph of their Neurology department is currently treating HKPP patients. That’s the place I believe I need to be at this point and that place we will tell Kaiser that we need to be referred to ASAP.
I’ve been crafting a letter to Kaiser for quite some time and hope to have it ready for hand delivery by the end of the week. We don’t want to wait any longer on that front.
Today’s entry is brief. More tomorrow, hopefully.
peace
Wednesday, January 31, 2007
Sunday, January 28, 2007
Sunday, January 28, 2007
Sunday, January 28, 2007
Yesterday was a “hang out” day for the most part. Missy’s friend, Jacie, spent the night Friday night and hung out here for the morning and then mom and dad came up around noonish. In the afternoon, shortly after my parents arrived, CC and her mom stayed at the house as my parents, the kids and I traveled up highway 80 to Auburn to the church that Novo had done the installation at, and my dad and I finished the final two punches on our list; to install the second wireless receiver into the rack we built and to place some cable raceway on the wall to conceal the incoming wires in the sound room coming from the wall and going to the rack. We (my dad and I) completed our mission while grandma and the kids hung out outside and played around until we were done. After finishing, we took a leisurely drive into downtown Old Town, Auburn and eventually found a Marie Calendar’s restaurant and had dinner there. We bought a Lemon Meringue pie and brought it home to CC, which was well received and seriously good. Marie Calendar’s ha sa pie sale on now through March, $5.99 per pie, except for cheesecakes. Wow.
Yesterday was a “hang out” day for the most part. Missy’s friend, Jacie, spent the night Friday night and hung out here for the morning and then mom and dad came up around noonish. In the afternoon, shortly after my parents arrived, CC and her mom stayed at the house as my parents, the kids and I traveled up highway 80 to Auburn to the church that Novo had done the installation at, and my dad and I finished the final two punches on our list; to install the second wireless receiver into the rack we built and to place some cable raceway on the wall to conceal the incoming wires in the sound room coming from the wall and going to the rack. We (my dad and I) completed our mission while grandma and the kids hung out outside and played around until we were done. After finishing, we took a leisurely drive into downtown Old Town, Auburn and eventually found a Marie Calendar’s restaurant and had dinner there. We bought a Lemon Meringue pie and brought it home to CC, which was well received and seriously good. Marie Calendar’s ha sa pie sale on now through March, $5.99 per pie, except for cheesecakes. Wow.
Also, kind of a fun note for the morning yesterday was that when I got up, Jacie and Missy had been up for quite a while and decided to make pancakes. Now before you freak, Missy’s been taught how to make them, but one of us has always been “there” when she’s made them. I got up to find them in the kitchen and she gleefully exclaims, “See daddy?! I made pancakes for you and for us! I was caught so off guard that I did not give the proper and expected reaction and missed my moment and she nearly went to tears because I wasn’t excited like she had thought I’d be. Talk about moments where you just want to crawl in a hole somewhere and rot by yourself. I held her for a while and explained I was tired and surprised and told her she could have bought me a car and I would have reacted similarly being so tired from just waking up. She forgave me and I reassured her how proud I truly was and am of her and asked her to tell me all about the makings and her morning so she could re-live the excitement and I could have a kind of second chance to be excited, after the fact. Buisquick and milk was truly all over the counter, no joke. They had used Nestle chocolate milk powder to make chocolate pancakes…I’d not have thought of that…I was truly impressed, appropriately. When I saw that I had hurt her by my lack of reaction, I’d like to have just died right then. I felt horrible. It’s a terrible feeling, unlike most any other and those who have very young kids, my prayer for you is to not know what I’m talking about, but life normally has that within its balance. It’s not fun, but their triumphs are.
This morning we all got up in time to make it to a 11:15 contemporary church service at Capital Christian Church (AOG) off Bradshaw and 50. CC determined that her mom was “with it” enough to remain home by herself that we went without her since she said flatly that she did not want to go with us or leave the house. 
We left in time to make it about 10 minutes early for service and we sat in the center section on the floor (there’s a balcony as well). The place is pretty big with all kinds of seating front to back and side to side. 
The lights were fairly contemporary which included moving gobos and changing colors, etc. My dad felt they were distracting, but for me they weren’t as distracting as Bayside’s lighting approach, so I was fine with them for the most part. I though that they were fairly tastefully done. All of us felt the volume was higher than necessary, but again, for me, it wasn’t painfully too loud, per se. The bad was 2 guitars, 1 bass, keys and drums with one guitarist leading in vocals and the keyboardist doing BGVs. CC noted that she would have preferred to hear a female voice in the mix, that it was missing for her ear in the all male band. 
Also, the band was just that, a band, not a worship team. Huge difference in package presentation, consistency, blend, stage spacing/look and communication. I saw what I used to have years ago and appreciated what they have now.The preacher was a guest preacher from India. He’s Chinese but born and raised in India. His name is Solomon Wang (pronounced Wong) and he made the joke a number of time that if you called him Wang, then you got it Wong…get it? We did…over and over. It got kind of old, but he was fast and furious in his excited delivery and he was a story teller who packed in a number of stories but no so much bible. I’d like to go back to hear their Preaching and Pastoring staff in the pulpit. I was pleased with the band, I’d like to have a chance to hear the teaching too. They had an advertisement up that showed David Crowder will be there February 8th, I think. We hope to take Missy and Josh to the show. Missy really enjoyed the “feeling” there and the music. Joshy liked the “funny man who kept telling the jokes and making everyone laugh and clap their hands”.
As we began to leave, exiting the aisle, I young guy, probably mid twenties came up to me from the adjoining section, walked straight, directly to me (my mom and Missy were with me) and he introduced himself, Andre I think…, anyway, he introduced himself and said he saw me walking with my cane and asked how long I’ve been using it/needing it. I told him and he said he’s with the healing team in the church and he asked me if he may pray for my healing. I said no and…kidding…I said of course and we stopped there in the aisle and he placed his hands on my head and shoulder and then prayed for me while my mom had her hand on my other should and Missy held my hand tightly. He finished his prayer by praying in tongues then thanking me for allowing him to pray for me. Missy was quite struck by that and immediately asked, after he had walked away, if we could start going to church here (at that church). I shared her sentiment but also said there’s more to it than just that, but how that‘s what you want to find in a church, no doubt.
After leaving the church, we drove to Logan’s Roadhouse in Citrus Height for lunch. Lunch was good and kick back which was great. While we waited for our food and as we began to eat, my dad shared much of his growing up, some of the stories of his youth and childhood which kept us all attentive, except for Joshy who was distracted by the TV screens with the snowboarding and motocross going on. As the conversation progressed, a lady in an adjacent booth to us got up as to leave but came to our booth and wiping away her tears, shared with us how blessed we are to have the opportunity to listen and share stories within the generations being that her parents both are in their 90’s and incapable of sharing anything due to the ravages of long lives and Alzheimer’s and such. She said she had just been listening to my dad tell the stories and was deeply touched by it. Before departing, she encourage d us to record his stories for the grandchildren and great-grandchildren to come and then she left, wiping her eyes as she walked away. We were all caught in the moment and felt how special our time was there.
After returning home, I set up the recording so I could sit with my dad and record some of his memories for compilation at a later date. We ended up recording about 50 minutes of his sharing while life happened all around us, so it’s not a silent recording with just the voice over kind of thing, but it sounds like your recording in a restaurant someplace with people coming and going all the time. It didn’t bother me then. We’ll see how I feel tomorrow when I listen to it back.
Oh yes, also, after returning home and before beginning the recording, Madoli and Carl came by to say hi and drop off a small gift to Missy. It was really neat to see them and touch bases. Their sincerity and love is truly a blessing and gift for me and for my family. They stayed for a short time before taking off to head out and grab some late lunch. I miss them. I miss my crew. I miss my friends. I miss engineering and mixing/blending; creating something from audible chaos, so to speak. That reads harsher than it truly is. Audio engineers take raw audio and blend it, weave it from channel to channel, from left to right, loud to soft, treble/tinny to muffled and boomy. That’s what I meant. In no way critical of one person or another.
Well, it’s time to bed…I’m yawning now.
-peace
Friday, January 26, 2007
Friday, January 26, 2007
Friday, January 26, 2007
A new direction for me this morning.
After writing my thoughts out last night, CC and I had a pretty significant talk regarding our individual views regarding what’s going on. As much as the fact that being flexible is not a gift of mine, I realized that the time is now for me to step further forward than I want to; to adopt a perspective uncomfortable and unpredictable to my normalcy.
My mother in law, Nana, is no longer capable of self care and independence. One of us must be home with her at all times now, due to the progression of and the condition of the bone cancer within her. Bone cancer eats away at the marrow of the bone (think termite and wood) and as it eats, it takes the calcium from the bones and slowly (or quickly if in the higher stages) distributes the calcium into the blood stream. This thickens the blood and thus, slows the travel of the blood through the body and brain, this forces the heart to work harder than it should or sometimes can and it blurs the brain’s ingestion of the nutrients and necessary bodies the blood is to carry to and from the brain.
Does your brain hurt yet…?
Her brain is not receiving the blood supply fast enough or pure enough, so it is slowly beginning to malfunction. Also, since the cancer is progressively eating away again, the bone pain is increasing. For several months now, she has refused to eat much food or drink much liquid, regardless of the strategies we would try, which is why she eventually ends up in the hospital for dehydration. She appears to understand what that is and why it happens, but does not think it will happen to her or she just is going to do what she’s going to do and she’ll tell you to leave her alone. Been there with her.
I understood last night that I must step into a caregiver role and frame of mind now, being that “things” have changed so significantly. Being a caregiver is a natural role for CC; a gift she flows in effortlessly. That’s not to say she has no problems in it or that the caregiving itself is easy. Anyone in the medical profession will tell you that caregiving is exhausting, non-stop, unrelenting and stressful. What I’m saying regarding CC, is that she understands the whole thing, pretty much in its entirety, and does it as if she’d already been through Med School with a straight A’s for grades. I, on the other hand, am often all thumbs when it comes to that disposition and further frustrating; I’m transparent in my lack of skill. Good thing is that I’m a damn quick study and I can acclimate in a pretty short period of time.
It’s difficult to care for someone when you yourself, don’t feel good. I’m sure that’s not new news for anyone and it’s rather basic, but it is the truth in a simple view. My responsibility now is to focus my energies between my care, my future, and the daily household responsibilities as well as Nana’s care and her state of health during any time that CC’s either not home or focused on a task which would take her full attention. There is another doc appointment for her within a week, I believe, and it will likely be a significant appointment; discussing her very recent past, current cancer progression and outlook/estimate, as well as addressing the level of her self care and accelerated health care and attention. I hope and expect that the whole topic of not eating/drinking will be addressed, but I also believe that the core issue there is depression, more than not.
Next.
Okay, as I went to bed last night, I took with me the printed out lab stats and notes from what appears to be 2005 and 2006. It’s possible that they go back as early as 2001, but I have not seen any from that time yet in my reading. As I scanned my way through several pages of lab numbers from the latter part of 2006, I came across the dictations of the treating physicians from my admissions and from my ER visits as well! Also found was the Neurologist’s notes from my visit with him in Walnut Creek! Specifically in that collection of information, he noted that I had tested negative for the 3 known HKPP gene mutations. Again, and I know that I’ve addressed this topic before, but let’s hit it again for clarity’s sake, shall we? Here are the facts: the three mutations that Kaiser searches for are calcium channel mutations; R528H, R1239H and R1239G. In fact, 14 mutations have been identified so far and not just in calcium channels, but also in sodium and potassium channels as well. Now, it must be noted that ALL hospitals and medical facilities are only searching for the three calcium channel mutations, not just Kaiser, which is a global frustration for those of *us* who are living with this condition known as HKPP. After reading his note to that regard, I KNEW that was a significant factor in his decision to oppose Dr. Iyengar’s diagnosis. From my “tiffany” view, in a world of rare and unusual conditions, symptoms and ideas must be combined in order to figure out the underlying issue(s) and be used in the inevitable conclusion which should be considered a diagnosis. The Walnut Creek neurologist does not want to consider multiple diagnoses for me, so he then must rule out one of the two proposed diagnoses, even if I have symptoms which suggest more than one issue at hand. He stated that I had “negative gene testing which excludes that consideration for three-fourths of patients.” I will be articulate and concise and will now sum up my reaction and response to his conclusion: bullshit. He concludes his dictation with this: “As he has only just recently started the spirinolactone and been doing better, I think it is reasonable not to rush into any next decision making.”
I am, of course, a bit more angry right now having just read it again, but you know, he’ll only know if I die from another attack if…:
1. he was to read about it in a newspaper article about a 43 year old man who died from a strange disease and he then thinks, “oh shit. He really did have multiple diagnoses."
2. my wife and family sue him, the hospital and the ER staff for their negligence and inevitable contribution to my death.
Okay, mellowing out now.
Reading his notes helps me understand why the whole process came to a stand still. He suggested it should and he thinks it’s unnecessary to move quickly in my care and investigation of my symptoms and condition.
It is time to be deliberate, intentional and correct in my (our) actions as we go forward. It’s time to be specific and move forward, legally, medically and morally.
I’ll be seeing about contacting the same law firm that we used back when we were dealing with our landlord from Fair Oaks, whose head began to spin around toward the end of our rental stay, but I digress…The law firm was based online and is out of Los Angeles and is apparently quite large and diversified with several branches handling different focuses of law. We need a couple of those now in our life and the charge is a monthly charge, if I remember correctly.
Knowing that Kaiser is intentionally not moving forward is a very important piece of information and enables us to address their Member Services Department in an informed manner with facts, not just feelings of frustration.
I talked to God all the way to the hospital yesterday; during the drive, during my waling through the garage, while I was in the elevator and silently when near or around anyone else in the vicinity, and I expressed my frustrations and hopes, my fears and concerns, my thoughts and perspectives and I asked for His intervention into this entire mess with my care at Kaiser and MetLife. I believe that the person in Member Services who gave me the free printed report (they aren’t allowed to print reports for patients) and who gave me the direct line to the supervisor in the Medical Secretaries offices did so because of His influence. And the supervisor in the Medical Secretaries office, who faxed a new document (one that should have been faxed but apparently was requested somewhere between the different departments) to MetLife and re-faxed the original document (she’s not to intervene in a task has been given to a secretary, that secretary and only that secretary can handle that paperwork) also did so at His influence.
Having this report gives us the doctors' own thoughts and perspectives in their own words.
Please continue your prayers for me and for us.
He is listening and moving in His ways and times and it will only be through Him that this whole process resolves.
CC’s exhausted. Please pray specifically for her.
Until I write again…
A new direction for me this morning.
After writing my thoughts out last night, CC and I had a pretty significant talk regarding our individual views regarding what’s going on. As much as the fact that being flexible is not a gift of mine, I realized that the time is now for me to step further forward than I want to; to adopt a perspective uncomfortable and unpredictable to my normalcy.
My mother in law, Nana, is no longer capable of self care and independence. One of us must be home with her at all times now, due to the progression of and the condition of the bone cancer within her. Bone cancer eats away at the marrow of the bone (think termite and wood) and as it eats, it takes the calcium from the bones and slowly (or quickly if in the higher stages) distributes the calcium into the blood stream. This thickens the blood and thus, slows the travel of the blood through the body and brain, this forces the heart to work harder than it should or sometimes can and it blurs the brain’s ingestion of the nutrients and necessary bodies the blood is to carry to and from the brain.
Does your brain hurt yet…?
Her brain is not receiving the blood supply fast enough or pure enough, so it is slowly beginning to malfunction. Also, since the cancer is progressively eating away again, the bone pain is increasing. For several months now, she has refused to eat much food or drink much liquid, regardless of the strategies we would try, which is why she eventually ends up in the hospital for dehydration. She appears to understand what that is and why it happens, but does not think it will happen to her or she just is going to do what she’s going to do and she’ll tell you to leave her alone. Been there with her.
I understood last night that I must step into a caregiver role and frame of mind now, being that “things” have changed so significantly. Being a caregiver is a natural role for CC; a gift she flows in effortlessly. That’s not to say she has no problems in it or that the caregiving itself is easy. Anyone in the medical profession will tell you that caregiving is exhausting, non-stop, unrelenting and stressful. What I’m saying regarding CC, is that she understands the whole thing, pretty much in its entirety, and does it as if she’d already been through Med School with a straight A’s for grades. I, on the other hand, am often all thumbs when it comes to that disposition and further frustrating; I’m transparent in my lack of skill. Good thing is that I’m a damn quick study and I can acclimate in a pretty short period of time.
It’s difficult to care for someone when you yourself, don’t feel good. I’m sure that’s not new news for anyone and it’s rather basic, but it is the truth in a simple view. My responsibility now is to focus my energies between my care, my future, and the daily household responsibilities as well as Nana’s care and her state of health during any time that CC’s either not home or focused on a task which would take her full attention. There is another doc appointment for her within a week, I believe, and it will likely be a significant appointment; discussing her very recent past, current cancer progression and outlook/estimate, as well as addressing the level of her self care and accelerated health care and attention. I hope and expect that the whole topic of not eating/drinking will be addressed, but I also believe that the core issue there is depression, more than not.
Next.
Okay, as I went to bed last night, I took with me the printed out lab stats and notes from what appears to be 2005 and 2006. It’s possible that they go back as early as 2001, but I have not seen any from that time yet in my reading. As I scanned my way through several pages of lab numbers from the latter part of 2006, I came across the dictations of the treating physicians from my admissions and from my ER visits as well! Also found was the Neurologist’s notes from my visit with him in Walnut Creek! Specifically in that collection of information, he noted that I had tested negative for the 3 known HKPP gene mutations. Again, and I know that I’ve addressed this topic before, but let’s hit it again for clarity’s sake, shall we? Here are the facts: the three mutations that Kaiser searches for are calcium channel mutations; R528H, R1239H and R1239G. In fact, 14 mutations have been identified so far and not just in calcium channels, but also in sodium and potassium channels as well. Now, it must be noted that ALL hospitals and medical facilities are only searching for the three calcium channel mutations, not just Kaiser, which is a global frustration for those of *us* who are living with this condition known as HKPP. After reading his note to that regard, I KNEW that was a significant factor in his decision to oppose Dr. Iyengar’s diagnosis. From my “tiffany” view, in a world of rare and unusual conditions, symptoms and ideas must be combined in order to figure out the underlying issue(s) and be used in the inevitable conclusion which should be considered a diagnosis. The Walnut Creek neurologist does not want to consider multiple diagnoses for me, so he then must rule out one of the two proposed diagnoses, even if I have symptoms which suggest more than one issue at hand. He stated that I had “negative gene testing which excludes that consideration for three-fourths of patients.” I will be articulate and concise and will now sum up my reaction and response to his conclusion: bullshit. He concludes his dictation with this: “As he has only just recently started the spirinolactone and been doing better, I think it is reasonable not to rush into any next decision making.”
I am, of course, a bit more angry right now having just read it again, but you know, he’ll only know if I die from another attack if…:
1. he was to read about it in a newspaper article about a 43 year old man who died from a strange disease and he then thinks, “oh shit. He really did have multiple diagnoses."
2. my wife and family sue him, the hospital and the ER staff for their negligence and inevitable contribution to my death.
Okay, mellowing out now.
Reading his notes helps me understand why the whole process came to a stand still. He suggested it should and he thinks it’s unnecessary to move quickly in my care and investigation of my symptoms and condition.
It is time to be deliberate, intentional and correct in my (our) actions as we go forward. It’s time to be specific and move forward, legally, medically and morally.
I’ll be seeing about contacting the same law firm that we used back when we were dealing with our landlord from Fair Oaks, whose head began to spin around toward the end of our rental stay, but I digress…The law firm was based online and is out of Los Angeles and is apparently quite large and diversified with several branches handling different focuses of law. We need a couple of those now in our life and the charge is a monthly charge, if I remember correctly.
Knowing that Kaiser is intentionally not moving forward is a very important piece of information and enables us to address their Member Services Department in an informed manner with facts, not just feelings of frustration.
I talked to God all the way to the hospital yesterday; during the drive, during my waling through the garage, while I was in the elevator and silently when near or around anyone else in the vicinity, and I expressed my frustrations and hopes, my fears and concerns, my thoughts and perspectives and I asked for His intervention into this entire mess with my care at Kaiser and MetLife. I believe that the person in Member Services who gave me the free printed report (they aren’t allowed to print reports for patients) and who gave me the direct line to the supervisor in the Medical Secretaries offices did so because of His influence. And the supervisor in the Medical Secretaries office, who faxed a new document (one that should have been faxed but apparently was requested somewhere between the different departments) to MetLife and re-faxed the original document (she’s not to intervene in a task has been given to a secretary, that secretary and only that secretary can handle that paperwork) also did so at His influence.
Having this report gives us the doctors' own thoughts and perspectives in their own words.
Please continue your prayers for me and for us.
He is listening and moving in His ways and times and it will only be through Him that this whole process resolves.
CC’s exhausted. Please pray specifically for her.
Until I write again…
Thursday, January 25, 2007
Thursday, January 25, 2007 pt.2
Thursday, January 25, 2007 pt.2
So, to pick up from where I left off, I went in to Kaiser around 10:00 or so and spent the follow 3 hours with Kaiser in one for or the other. I spent 2 hours with Member Services, filling out more forms and making phone calls form my cell and then another hour at my primary’s office waiting for an in-house form to be completed and returned to me. As it was, I had to leave my primary’s office before the form was returned to me, so I could go and pick up the kids from school and then there was no time to go back and check on it.
So what’s the bottom line at this point? The bottom line is:
- Kaiser has only record of sending any disability paperwork to EDD (State) and nothing to MetLife
- Kaiser says they faxed the medical records were faxed on Jan 11 but the person responsible for the fax (in Kaiser) is now on vacation and will not be back until February 5 and she is the only one permitted to re-send the fax.
- Kaiser has moved on the EDD claim for disability, which we are likely not qualified for, but has not moved on the actual claim from MetLife.
- I filled out more forms to get the MetLife disability claim moving, besides whatever it was that Kaiser faxed a couple weeks ago.
- My primary is deciding what length of disability I will be on and I should know that within a couple days, I would guess.
- I’ve requested my entire medical chart from Kaiser, but will have to pay $.25 cents per page for their copying, so who knows how much that will end up costing, but whatever the cost, I need to have those records for our own benefit and logistics and in case something goes pathetically wrong with the Kaiser relationship.
- A person within Member Services took pity on me in the moment I was there for the two hours and she printed out my entire lab results and tests from 2001. 30 pages, I believe, of notes and numbers. At least I have that.
That’s all I can think of from that trip.
Yesterday’s doc visit with my primary saw an increase in my methadone and the addition of a med called Gabapentin to help with the chronic nerve and muscle pain that is present 24x7 now. Dealing with the meds slowly and keeping an eye on them and the amounts and all that fun stuff.
Wow. Life’s really tough right now. Mental and emotional meat grinder on slow.
Uh, okay. Parent’s are looking to come up on Saturday as are my sister and nephew too. We’ll strive for a day out up in Nevada City or Auburn with everyone except CC and Nana who will remain here at home. Nana cannot be left unattended now (anymore) and that gig now falls squarely on us for this time being. Answers from the doctors will yield the likely direction we will take as a family and for CC’s brother and her. They have much to figure out, unenviable in its smallest factor. A whole different kind of emotional meat grinder there, only those blades are dull.
Yeah.
That’s it.
So, to pick up from where I left off, I went in to Kaiser around 10:00 or so and spent the follow 3 hours with Kaiser in one for or the other. I spent 2 hours with Member Services, filling out more forms and making phone calls form my cell and then another hour at my primary’s office waiting for an in-house form to be completed and returned to me. As it was, I had to leave my primary’s office before the form was returned to me, so I could go and pick up the kids from school and then there was no time to go back and check on it.
So what’s the bottom line at this point? The bottom line is:
- Kaiser has only record of sending any disability paperwork to EDD (State) and nothing to MetLife
- Kaiser says they faxed the medical records were faxed on Jan 11 but the person responsible for the fax (in Kaiser) is now on vacation and will not be back until February 5 and she is the only one permitted to re-send the fax.
- Kaiser has moved on the EDD claim for disability, which we are likely not qualified for, but has not moved on the actual claim from MetLife.
- I filled out more forms to get the MetLife disability claim moving, besides whatever it was that Kaiser faxed a couple weeks ago.
- My primary is deciding what length of disability I will be on and I should know that within a couple days, I would guess.
- I’ve requested my entire medical chart from Kaiser, but will have to pay $.25 cents per page for their copying, so who knows how much that will end up costing, but whatever the cost, I need to have those records for our own benefit and logistics and in case something goes pathetically wrong with the Kaiser relationship.
- A person within Member Services took pity on me in the moment I was there for the two hours and she printed out my entire lab results and tests from 2001. 30 pages, I believe, of notes and numbers. At least I have that.
That’s all I can think of from that trip.
Yesterday’s doc visit with my primary saw an increase in my methadone and the addition of a med called Gabapentin to help with the chronic nerve and muscle pain that is present 24x7 now. Dealing with the meds slowly and keeping an eye on them and the amounts and all that fun stuff.
Wow. Life’s really tough right now. Mental and emotional meat grinder on slow.
Uh, okay. Parent’s are looking to come up on Saturday as are my sister and nephew too. We’ll strive for a day out up in Nevada City or Auburn with everyone except CC and Nana who will remain here at home. Nana cannot be left unattended now (anymore) and that gig now falls squarely on us for this time being. Answers from the doctors will yield the likely direction we will take as a family and for CC’s brother and her. They have much to figure out, unenviable in its smallest factor. A whole different kind of emotional meat grinder there, only those blades are dull.
Yeah.
That’s it.
Thursday Morning, January 25, 2007...Hmmm... mad.
Thursday, January 25, 2007
This morning started early enough; getting up at 5:00 AM to wake up Missy so she can shower and get ready for school in an un-rushed fashion and so that CC could sleep in for a change.
Both kids got going as should be and are now (it’s 8:03) on their way to school via a friend of ours. I made a call to the disability folks, just a bit ago, to verify that they received the fax from Kaiser (which Kaiser said they faxed last week) and I wanted to know what paperwork would be necessary from Kaiser should my “return to work” date be modified.
They said that they have not received any correspondence from Kaiser as of yet. Also, all that they will need from the doctor is a note with his signature, stating the new date for returning to work should it become modified from the original.
I was told by a receptionist at Member Services in Kaiser that they don’t take appointments, but to come to the office between 8:30 and 10:00 AM and the line should be minimal to nothing.
Looks as though I may be making that trip this morning or tomorrow morning, one way or another, since Kaiser stated to us that they had faxed and mailed the requested forms to MetLife last week and MetLife says they’ve received no communications. Someone’s lying. Could be less dramatic than that, but my feelings are that someone’s lying and whoever the hell it is, is putting our reimbursement pay in jeopardy. To date, I’m not impressed with Kaiser, except for my Primary Care doctor and my Nephrologist. Everyone else is pissing me off to no end, currently.
Time to decide if I want to get dressed fairly quick and gather my existing notes and head in to Member Services or filter more notes and such and go in tomorrow.
I’m angry now so I don’t feel much like writing anything else at the moment. The rest of today’s post will have to wait until I feel more like being nice (which is not right now.)
See ya
This morning started early enough; getting up at 5:00 AM to wake up Missy so she can shower and get ready for school in an un-rushed fashion and so that CC could sleep in for a change.
Both kids got going as should be and are now (it’s 8:03) on their way to school via a friend of ours. I made a call to the disability folks, just a bit ago, to verify that they received the fax from Kaiser (which Kaiser said they faxed last week) and I wanted to know what paperwork would be necessary from Kaiser should my “return to work” date be modified.
They said that they have not received any correspondence from Kaiser as of yet. Also, all that they will need from the doctor is a note with his signature, stating the new date for returning to work should it become modified from the original.
I was told by a receptionist at Member Services in Kaiser that they don’t take appointments, but to come to the office between 8:30 and 10:00 AM and the line should be minimal to nothing.
Looks as though I may be making that trip this morning or tomorrow morning, one way or another, since Kaiser stated to us that they had faxed and mailed the requested forms to MetLife last week and MetLife says they’ve received no communications. Someone’s lying. Could be less dramatic than that, but my feelings are that someone’s lying and whoever the hell it is, is putting our reimbursement pay in jeopardy. To date, I’m not impressed with Kaiser, except for my Primary Care doctor and my Nephrologist. Everyone else is pissing me off to no end, currently.
Time to decide if I want to get dressed fairly quick and gather my existing notes and head in to Member Services or filter more notes and such and go in tomorrow.
I’m angry now so I don’t feel much like writing anything else at the moment. The rest of today’s post will have to wait until I feel more like being nice (which is not right now.)
See ya
Wednesday, January 24, 2007
Wednesday Evening, January 24, 2007 - Inspiration
Wednesday, January 24, 2007
Pretty interesting moment this afternoon when CC and I sat down and watched a movie documentary called "Paper Clips" about a school in Tennessee that learned about the Holocaust and collected paper clips in honor of all of the people murdered by the Nazis in the death camps. The school even received a cattle car (one of the actual rail cars that carried the Jews to the camps) to make a memorial of with and to contain the over 29 million paper clips they collected.
It was an emotional documentary; very much worth your time to view, if you get the chance.
Here's a strange reality. What came from the movie was a moment when I hear myself think, "Don't disappear" and my thoughts instantly went to my father. He's not ill or sick or anything of that sort and I'm not certain why the inspiration was so clear and so strong, but it was and I sat down and wrote and titled the following moment in my mind.
My best understanding is that so many families were decimated and destroyed with no lineage, no history, no memories to carry on, no grandparents, no aunts, no uncles. Just death, absence and silence. My heart broke for them and yet was found reaching desperately for my family, to hold and to have as an actual blessing; to have as something invaluable that I don't want to conceive being without.
Maybe that makes sense. Maybe it doesn't. I guess it does for me and the bottom line is, when I hit the "publish" button to post this entry, I suppose that's all that really matters at this point.
He hasn't read it before this post. No one has. Strange to share like this.
Dedicated to my dad and my family.
Don’t Disappear
There’s so much to learn and so much I want to know
I want to sit at your feet while you share your heart
I look in your eyes and I see the past, it’s so clear
I see you smile as you remember your family so dear
Tell me again about your days growing up
I love to hear about all the family I’ve seen
The pictures black and white, discolored by age
My aunts and uncles, your sisters and brothers all on the same page
Don’t disappear, don’t go away
Please say you’ll stay with me for just another day
Don’t lose your words or let them fall quiet
Share the world with me, don’t be silent
It scares me so to think of the time
When I won’t have you, when I can’t keep what’s mine
So talk to me please and tell me all about
The life you’ve lived, don’t leave anything out
Don’t disappear, don’t go away
Please say you’ll stay with me for just another day
Don’t lose your words or let them fall quiet
Share the world with me, don’t be silent
Have you ever wondered where you’d be
Had you not moved out to this side of the country
What if you’d stayed and lived in the days
of your family’s thoughts and your family’s learned ways
Don’t disappear, don’t go away
Please say you’ll stay with me for just another day
Don’t lose your words or let them fall quiet
Share the world with me, don’t be silent
I close my eyes and think of how it would have been for me
Should I have been born into another family
But I thank my God for the family I love
For my sister and mother, my dad and my father above
The treasures I would miss exchanging time for a time
Only guessing I’d have no care for the rhyme
Would I have a sister and parents still married in love
Or a broken home or broken heart; the broken wings of the dove
Don’t disappear, don’t go away
Please say you’ll stay with me for just another day
Don’t lose your words or let them fall quiet
Share the world with me, don’t be silent
~~~~~~~~~~~~~~~~~~~~~~~~~~~
I'll write more later tonight or tomorrow; there's a fair amount more to say.
Medication changes, creative idea with a buddy, doctor visit from today, etc.
I can't tell if I'm in the place to share more of my writings (songs) or not...Hhmmm...I'll have to wait and see. I'm still uncertain.
Today was a cane day.
Potassium was 4.2 yesterday and about the same today.
Lower 4s and any 3s bring pain with them, so I'm learning.
peace
Pretty interesting moment this afternoon when CC and I sat down and watched a movie documentary called "Paper Clips" about a school in Tennessee that learned about the Holocaust and collected paper clips in honor of all of the people murdered by the Nazis in the death camps. The school even received a cattle car (one of the actual rail cars that carried the Jews to the camps) to make a memorial of with and to contain the over 29 million paper clips they collected.
It was an emotional documentary; very much worth your time to view, if you get the chance.
Here's a strange reality. What came from the movie was a moment when I hear myself think, "Don't disappear" and my thoughts instantly went to my father. He's not ill or sick or anything of that sort and I'm not certain why the inspiration was so clear and so strong, but it was and I sat down and wrote and titled the following moment in my mind.
My best understanding is that so many families were decimated and destroyed with no lineage, no history, no memories to carry on, no grandparents, no aunts, no uncles. Just death, absence and silence. My heart broke for them and yet was found reaching desperately for my family, to hold and to have as an actual blessing; to have as something invaluable that I don't want to conceive being without.
Maybe that makes sense. Maybe it doesn't. I guess it does for me and the bottom line is, when I hit the "publish" button to post this entry, I suppose that's all that really matters at this point.
He hasn't read it before this post. No one has. Strange to share like this.
Dedicated to my dad and my family.
Don’t Disappear
There’s so much to learn and so much I want to know
I want to sit at your feet while you share your heart
I look in your eyes and I see the past, it’s so clear
I see you smile as you remember your family so dear
Tell me again about your days growing up
I love to hear about all the family I’ve seen
The pictures black and white, discolored by age
My aunts and uncles, your sisters and brothers all on the same page
Don’t disappear, don’t go away
Please say you’ll stay with me for just another day
Don’t lose your words or let them fall quiet
Share the world with me, don’t be silent
It scares me so to think of the time
When I won’t have you, when I can’t keep what’s mine
So talk to me please and tell me all about
The life you’ve lived, don’t leave anything out
Don’t disappear, don’t go away
Please say you’ll stay with me for just another day
Don’t lose your words or let them fall quiet
Share the world with me, don’t be silent
Have you ever wondered where you’d be
Had you not moved out to this side of the country
What if you’d stayed and lived in the days
of your family’s thoughts and your family’s learned ways
Don’t disappear, don’t go away
Please say you’ll stay with me for just another day
Don’t lose your words or let them fall quiet
Share the world with me, don’t be silent
I close my eyes and think of how it would have been for me
Should I have been born into another family
But I thank my God for the family I love
For my sister and mother, my dad and my father above
The treasures I would miss exchanging time for a time
Only guessing I’d have no care for the rhyme
Would I have a sister and parents still married in love
Or a broken home or broken heart; the broken wings of the dove
Don’t disappear, don’t go away
Please say you’ll stay with me for just another day
Don’t lose your words or let them fall quiet
Share the world with me, don’t be silent
~~~~~~~~~~~~~~~~~~~~~~~~~~~
I'll write more later tonight or tomorrow; there's a fair amount more to say.
Medication changes, creative idea with a buddy, doctor visit from today, etc.
I can't tell if I'm in the place to share more of my writings (songs) or not...Hhmmm...I'll have to wait and see. I'm still uncertain.
Today was a cane day.
Potassium was 4.2 yesterday and about the same today.
Lower 4s and any 3s bring pain with them, so I'm learning.
peace
Tuesday, January 23, 2007
Tuesday, January 23, 2007
Tuesday, January 23, 2007
Nana, CC’s mom, is being discharged tonight and will be coming back to our house at this point in time. She has obviously progressed back into a better state of health than where she was a week ago, but we are far from well at this point. There’s much to be discussed and decided now.
I went to the dentist this morning and had 6 original fillings replaced due to them fracturing with age and the subsequent damage they caused the filled tooth. After a fair amount discussion regarding HKPP and my history with dentistry, the dentist shared that he would use a new numbing agent rather than the standard Lignocaine, which has been proven to cause cancer in lab rats. Apparently, many practices are changing over from lignocaine to another agent because of the lab studies. Lignocaine is a trigger for HKPP in many cases and my history shows that true. While speaking to my mom tonight on the phone, she asked me if I recalled one of the dentist appointments I had in high school where my face began to go into paralysis, spreading from the injection site and progressively numbing my head, neck, shoulders and she was remembering my torso possibly as well. Until she had reminded me of it, I had no recollection of it. Once she brought it up, I could remember the actual appointment, being scared on the way home and being scared at home as the paralysis progressed. As I recall, it was right around then that everyone realized that the lignocaine and Novocain brought about no pain relief during the drilling and mouth-work and that I wasn’t just an over-sensitive patient. For most of my youth, the drilling was done without the areas being numbed. I’ve blocked a lot of memories.
I’m still dealing with the effects of the work from this morning; kind slow, brain fog, still some mouth numbness from the shots, but no pain from the work, which is great. I’m really hoping that the next 72 hours will pass without anything coming from the appointment. Prayers there would be more than appreciated. Prayers for our household tonight and for the next number of weeks will also be appreciated as we determine care for CC’s mom, our home and family and continued healing.
Nana, CC’s mom, is being discharged tonight and will be coming back to our house at this point in time. She has obviously progressed back into a better state of health than where she was a week ago, but we are far from well at this point. There’s much to be discussed and decided now.
I went to the dentist this morning and had 6 original fillings replaced due to them fracturing with age and the subsequent damage they caused the filled tooth. After a fair amount discussion regarding HKPP and my history with dentistry, the dentist shared that he would use a new numbing agent rather than the standard Lignocaine, which has been proven to cause cancer in lab rats. Apparently, many practices are changing over from lignocaine to another agent because of the lab studies. Lignocaine is a trigger for HKPP in many cases and my history shows that true. While speaking to my mom tonight on the phone, she asked me if I recalled one of the dentist appointments I had in high school where my face began to go into paralysis, spreading from the injection site and progressively numbing my head, neck, shoulders and she was remembering my torso possibly as well. Until she had reminded me of it, I had no recollection of it. Once she brought it up, I could remember the actual appointment, being scared on the way home and being scared at home as the paralysis progressed. As I recall, it was right around then that everyone realized that the lignocaine and Novocain brought about no pain relief during the drilling and mouth-work and that I wasn’t just an over-sensitive patient. For most of my youth, the drilling was done without the areas being numbed. I’ve blocked a lot of memories.
I’m still dealing with the effects of the work from this morning; kind slow, brain fog, still some mouth numbness from the shots, but no pain from the work, which is great. I’m really hoping that the next 72 hours will pass without anything coming from the appointment. Prayers there would be more than appreciated. Prayers for our household tonight and for the next number of weeks will also be appreciated as we determine care for CC’s mom, our home and family and continued healing.
Sunday, January 21, 2007
Sunday, January 21, 2007 - Quick update
Sunday, January 21, 2007
Evening'-
CC's mom is now stable and out of ICU. They're running several more tests to try an determine what has gone on in the past 24 hours. As I understand, the CAT scans came back negative for the different possibilities they were searching for so they are focusing on the labs at this point.
CC's back at home now (came home about 30 minutes ago) and is getting ready to go to bed and then get up at 4:00 AM to get ready and go to work tomorrow morning. No rest there.
Angel and her mom Kim, have gone back to Pacifica where Angel will then head down to Hollister. Chris and Brooke are on shift at the hospital tonight and I'm guessing that CC will be heading there after she gets off work in the morning.
Back to the grind with Kaiser and figuring out how to make progress there. Also need to call the Disability folks to make certain they have received all the documentation they have asked for.
Missy did some recording tonight but instead of recording music as I expected her to do, she instead, recorded a 4 person monologue (she created 4 people who were having a conversation) and she effected each person's voice differently to match the created personality. I was truly surprised. I then recorded a one-sided conversation with her and had her record the reactions/responses to my dialog and then showed her how to edit the WAVE form and move it around to eliminate dead air and make the two voicings sound conversational.
Wow. It was cool. And she caught on frighteningly quick to the audio editing...hmmmm.
'night-
Evening'-
CC's mom is now stable and out of ICU. They're running several more tests to try an determine what has gone on in the past 24 hours. As I understand, the CAT scans came back negative for the different possibilities they were searching for so they are focusing on the labs at this point.
CC's back at home now (came home about 30 minutes ago) and is getting ready to go to bed and then get up at 4:00 AM to get ready and go to work tomorrow morning. No rest there.
Angel and her mom Kim, have gone back to Pacifica where Angel will then head down to Hollister. Chris and Brooke are on shift at the hospital tonight and I'm guessing that CC will be heading there after she gets off work in the morning.
Back to the grind with Kaiser and figuring out how to make progress there. Also need to call the Disability folks to make certain they have received all the documentation they have asked for.
Missy did some recording tonight but instead of recording music as I expected her to do, she instead, recorded a 4 person monologue (she created 4 people who were having a conversation) and she effected each person's voice differently to match the created personality. I was truly surprised. I then recorded a one-sided conversation with her and had her record the reactions/responses to my dialog and then showed her how to edit the WAVE form and move it around to eliminate dead air and make the two voicings sound conversational.
Wow. It was cool. And she caught on frighteningly quick to the audio editing...hmmmm.
'night-
Saturday, January 20, 2007
Saturday, January 20, 2007
Well it is 11:59 PM, so it’s technically still Saturday for this entry.
I received a call from CC who is down in Pacifica with her oldest sister, at about 11:25 PM to let me know that the hospital called her and asked her how soon she could get there…for those who’ve never dealt with a scenario where a loved one is in a hospital, to get a call asking you how soon you can get there is not a good thing. CC’s mom began labored breathing at some point tonight and sometime after that her blood pressure took off and she has become delusional to a significant extent. The hospital caller Chris, CC’s brother and caller her as well and her brother was able to get to the hospital fairly quickly, within the hour, I’d bet. CC’s going to drive up tomorrow morning first thing and go there as well. I have both kids and no ready-made plans for them to be covered in any way, so my participation at this point is not practical. The plan for her mom is that she is heading into ICU now and if they can’t calm her breathing down then they will intubate to relieve her labor in breathing and will get moving on some diagnostics to determine if she’s encountering a blood clot or not and go from there. That’s the first place they’ll begin anyway.
I spoke to her for a short while tonight and asked her how she was doing and she sounded somewhat labored in her breathing, but she’s done that in the past here at the house and under the stressful circumstances I thought it not unusual. She was hopeful for CC to come back up from the Bay Area sooner than later and wanted to know how the kids were doing. She said she was glad I called and I told her I’d call her tomorrow in the morning some time to see how she’s doing then.
For those who pray, you have a plethora of points to pray about, but I’d selfishly ask that you be praying for CC’s drive back up from the Bay Area and for her safety. Also that if we are “on a street where there will be no U turn this time”, that CC can make it safely to the hospital with time to spare to see her mom. I’d like to get there too, but it is much more important for CC to get there than me.
Okay.
I’ll share more in the next entry regarding my buddy from Nebraska visiting last night and this morning and seeing his family for lunch as well and some more accumulative thoughts regarding Kaiser, HKPP and the whole ISSUE a hand.
Oh yeah, almost forgot; Joshy recorded his first song tonight, EVER. He used a percussion WAV loop and then played a guitar part, a keyboard part (played specifically against the guitar part, very intentional and expressive), and 5, yes count them, 5 vocal parts. No words, just vocal improve; scat-like at points and also very intentional. I ran his vocal mic through my guitar processor so he could have some fun creative effects to use. Very interestingly, one of the vocal tracks he wanted left dry (dry means unaffected and untreated) which really surprised me as well. He was not the least bit embarrassed or bashful to do the vocal work with me right there. I’m as proud as I can be…
It’s now 12:25 AM on Sunday morning and the phone just rang a couple minutes ago. CC, her oldest sister Kim and Kim’s daughter, Angel are all on their way up to the hospital now, driving. Being that her father passed away from a blood clot while having been in the hospital for less than 48 hours and that the girls did not get to the hospital before he died, they’re on their way now to give themselves the best shot at it this time. I begged her to drive carefully knowing it’s useless to ask them not to speed and for her to call me when they get to the hospital.
Sleepless night on its way.
So, since that’s going to be the case, might as well continue to write, no?
So, my brother of many, many years Keith Nesja flew in to Sac on Friday night and I picked him up at the airport and brought him back to our house for the night. We hung out and talked until a little past midnight then called it quits and went to bed.
Waking up yesterday morning (Yes, I’ve gone ahead and changed days within the same entry and now am calling yesterday “Saturday”) was clear that it would be a cane day again. I woke up during the night with numbing in my hands and fingers and pain followed. Unfortunate and interesting correlation. Anyway, when I got up at 8:00, CC was finishing getting ready to leave for Pacifica so she could participate in the creation and construction of her niece Angel’s wedding invitations. They’d planned this excursion for some time and I had missed the bulk of that info, so my mood was kinda bummed that she was leaving for the day and night, but hooking up with Keith was a worthy distraction. She left as Keith was making pancakes for Joshy and Missy.
So there.
After breakfast, he took me to the garage and asked which of the many boxes are the Christmas boxes so he can put them back up into the garage loft storage. CC’s been gone so she doesn’t know and hasn’t seen his work in there yet, but I know it will bless her even more than it did me.
His parents and sister with two of her sons arrived around noonish to have lunch with any of the Odum clan on site and then collect Keith and take him to there place outside Jackson. Keith came into town because of a legal battle a former employer is in and Keith is there to help out in the case on Monday. It’ such a blessing that he was willing to allow time to hang at our place for a little while before hooking up with his parents and sister. I’m obviously still blessed.
We all went to Chili’s for lunch where everyone else ordered a burger…so…I did too. I don’t believe I had any major repercussions from it, at least not yet. According to documents, the triggers can be within 72 hours, so we’ll just have to wait and see. What I HAVE to do is get off my butt and create a food diary/journal like EVERY ONE ELSE who has this, so I can more effectively track my food triggers. I’m so intimidated by it and feel like it will be overwhelming and impossible to keep with any consistency, that I bail on it before I actually begin to pass the 48 hour mark.
After Keith and the family left after a fun lunch all together, I hung out on the couch and veg’d watching some cable. Gene Simmon’s Family Jewels” was on, in fact they were running a handful of episodes back to back so I was quite entertained for about an hour and a half. That show has clearly shown him in a far, far different light than I would have ever thought him to be in. There is so much more to Gene than what he has let everyone see and know of himself and this show is the perfect vehicle to let people see the husband, father and fragile *nice* person behind the demon KISS persona he enjoys so much. I could easily rant on him for a while and it’s tempting, but I’ll only share a couple more things.
The walking bridge in Fair Oaks
View from the path
View from the bridge.
Well it is 11:59 PM, so it’s technically still Saturday for this entry.
I received a call from CC who is down in Pacifica with her oldest sister, at about 11:25 PM to let me know that the hospital called her and asked her how soon she could get there…for those who’ve never dealt with a scenario where a loved one is in a hospital, to get a call asking you how soon you can get there is not a good thing. CC’s mom began labored breathing at some point tonight and sometime after that her blood pressure took off and she has become delusional to a significant extent. The hospital caller Chris, CC’s brother and caller her as well and her brother was able to get to the hospital fairly quickly, within the hour, I’d bet. CC’s going to drive up tomorrow morning first thing and go there as well. I have both kids and no ready-made plans for them to be covered in any way, so my participation at this point is not practical. The plan for her mom is that she is heading into ICU now and if they can’t calm her breathing down then they will intubate to relieve her labor in breathing and will get moving on some diagnostics to determine if she’s encountering a blood clot or not and go from there. That’s the first place they’ll begin anyway.
I spoke to her for a short while tonight and asked her how she was doing and she sounded somewhat labored in her breathing, but she’s done that in the past here at the house and under the stressful circumstances I thought it not unusual. She was hopeful for CC to come back up from the Bay Area sooner than later and wanted to know how the kids were doing. She said she was glad I called and I told her I’d call her tomorrow in the morning some time to see how she’s doing then.
For those who pray, you have a plethora of points to pray about, but I’d selfishly ask that you be praying for CC’s drive back up from the Bay Area and for her safety. Also that if we are “on a street where there will be no U turn this time”, that CC can make it safely to the hospital with time to spare to see her mom. I’d like to get there too, but it is much more important for CC to get there than me.
Okay.
I’ll share more in the next entry regarding my buddy from Nebraska visiting last night and this morning and seeing his family for lunch as well and some more accumulative thoughts regarding Kaiser, HKPP and the whole ISSUE a hand.
Oh yeah, almost forgot; Joshy recorded his first song tonight, EVER. He used a percussion WAV loop and then played a guitar part, a keyboard part (played specifically against the guitar part, very intentional and expressive), and 5, yes count them, 5 vocal parts. No words, just vocal improve; scat-like at points and also very intentional. I ran his vocal mic through my guitar processor so he could have some fun creative effects to use. Very interestingly, one of the vocal tracks he wanted left dry (dry means unaffected and untreated) which really surprised me as well. He was not the least bit embarrassed or bashful to do the vocal work with me right there. I’m as proud as I can be…
It’s now 12:25 AM on Sunday morning and the phone just rang a couple minutes ago. CC, her oldest sister Kim and Kim’s daughter, Angel are all on their way up to the hospital now, driving. Being that her father passed away from a blood clot while having been in the hospital for less than 48 hours and that the girls did not get to the hospital before he died, they’re on their way now to give themselves the best shot at it this time. I begged her to drive carefully knowing it’s useless to ask them not to speed and for her to call me when they get to the hospital.
Sleepless night on its way.
So, since that’s going to be the case, might as well continue to write, no?
So, my brother of many, many years Keith Nesja flew in to Sac on Friday night and I picked him up at the airport and brought him back to our house for the night. We hung out and talked until a little past midnight then called it quits and went to bed.
Waking up yesterday morning (Yes, I’ve gone ahead and changed days within the same entry and now am calling yesterday “Saturday”) was clear that it would be a cane day again. I woke up during the night with numbing in my hands and fingers and pain followed. Unfortunate and interesting correlation. Anyway, when I got up at 8:00, CC was finishing getting ready to leave for Pacifica so she could participate in the creation and construction of her niece Angel’s wedding invitations. They’d planned this excursion for some time and I had missed the bulk of that info, so my mood was kinda bummed that she was leaving for the day and night, but hooking up with Keith was a worthy distraction. She left as Keith was making pancakes for Joshy and Missy.
Now before you get in my face about my guest making and serving food, let's remember the following, shall we? Here we go:
1. Keith is more my brother than guest, and I mean that in the most familial and appreciative way I possibly can.
2. Joshy asked HIM to make the pancakes and before I could choose to be miffed that I WASN’T asked, Keith had asked where the Bisquick box was located.
3. Keith is a dad of 3 (oldest is twelve) and is always in “dad-mode” whenever I’ve seen him since he’s had his family of children.
4. Keith is my brother and has always been an example of a servant, right down to making pancakes for his friend’s kids.
1. Keith is more my brother than guest, and I mean that in the most familial and appreciative way I possibly can.
2. Joshy asked HIM to make the pancakes and before I could choose to be miffed that I WASN’T asked, Keith had asked where the Bisquick box was located.
3. Keith is a dad of 3 (oldest is twelve) and is always in “dad-mode” whenever I’ve seen him since he’s had his family of children.
4. Keith is my brother and has always been an example of a servant, right down to making pancakes for his friend’s kids.
So there.
After breakfast, he took me to the garage and asked which of the many boxes are the Christmas boxes so he can put them back up into the garage loft storage. CC’s been gone so she doesn’t know and hasn’t seen his work in there yet, but I know it will bless her even more than it did me.
His parents and sister with two of her sons arrived around noonish to have lunch with any of the Odum clan on site and then collect Keith and take him to there place outside Jackson. Keith came into town because of a legal battle a former employer is in and Keith is there to help out in the case on Monday. It’ such a blessing that he was willing to allow time to hang at our place for a little while before hooking up with his parents and sister. I’m obviously still blessed.
We all went to Chili’s for lunch where everyone else ordered a burger…so…I did too. I don’t believe I had any major repercussions from it, at least not yet. According to documents, the triggers can be within 72 hours, so we’ll just have to wait and see. What I HAVE to do is get off my butt and create a food diary/journal like EVERY ONE ELSE who has this, so I can more effectively track my food triggers. I’m so intimidated by it and feel like it will be overwhelming and impossible to keep with any consistency, that I bail on it before I actually begin to pass the 48 hour mark.
After Keith and the family left after a fun lunch all together, I hung out on the couch and veg’d watching some cable. Gene Simmon’s Family Jewels” was on, in fact they were running a handful of episodes back to back so I was quite entertained for about an hour and a half. That show has clearly shown him in a far, far different light than I would have ever thought him to be in. There is so much more to Gene than what he has let everyone see and know of himself and this show is the perfect vehicle to let people see the husband, father and fragile *nice* person behind the demon KISS persona he enjoys so much. I could easily rant on him for a while and it’s tempting, but I’ll only share a couple more things.
He’s Hebrew. Born and early-raised in Israel. That fact dumbfounded me. No wonder he knows scripture well enough to knock the verbal crap out of those who have tried to force him into some kind of Christian persuasion through knowledge of the scriptures. God knows the hearts of man, including Gene’s heart and his relationship is between God and him. I think there was a time in the eighties when some in Hollywood thought it “the” victory to “convert” Gene Simmons and even then it angered me. Keep in mind that I lived in LA as well as Orange County for a number of years and gigged there with the band I was in, Forthright, and we played some of the LA clubs (for those who remember Gazzari’s on the Sunset strip) and hung out quite a few times on the strip on Friday and Saturday nights and we were in the middle of the Christian metal and rock buzz of that time. For what it’s worth, if I recall correctly, we had to buy 50 $20.00 tickets to perform at Gazzari’s (it cost us $1,000.00 to play there) in 1990, I believe.
Oh well, I digressed again, but hey, it’s now 1:40 AM and I may not have much left but digression…
Now it is 1:48 and I just talked to Cs who’s just passing through Davis so they should be to the hospital before too much longer. I won’t be able to sleep until she reaches the hospital.
Here are some picks from my walk last week when the kids and CC rode up to the hatchery.
Peace.
Look for the mocking bird (black and white)
Oh well, I digressed again, but hey, it’s now 1:40 AM and I may not have much left but digression…
Now it is 1:48 and I just talked to Cs who’s just passing through Davis so they should be to the hospital before too much longer. I won’t be able to sleep until she reaches the hospital.
Here are some picks from my walk last week when the kids and CC rode up to the hatchery.
Peace.
Look for the mocking bird (black and white)
The walking bridge in Fair Oaks
View from the path
View from the bridge.
Friday, January 19, 2007
Friday, January 19, 2007
Friday, January 19, 2007
This will be a shorter write at this point; I am compiling as much data as I can to put together what I will need to take to the Kaiser Brass, as it were, and demand better care or referral.
I've been suggested to contact and pursue MDA (Muscular Dystrophy Association) in this whole process, so I am checking that out.
Here's a link to an MDA article on Periodic Paralysis from a 1998 Quest edition: http://www.mda.org/publications/Quest/q53periodic.html
Definitely worth the read, though it gets thick towards the end of the article as they describe the nuts and bolts of what Hyper/Hypo Kalemic Periodic Paralysis is.
I'm pooling my memories and understandings into a single Word document and I'll copy that info into this entry as well. I'm not certain I'll leave this entery up, but I did want to get it out where I could read it and digest it.
Attacks Recalled:
*Earliest Recollection: 5 years of age
- Very painful re-entry from anesthesia and surgery
- Body paralysis for 24 hours as a result of surgery/anesthetic
*In the Teen Years (1973 – 1982)
- One to three attacks per year
- Normally treated at home with rest and diet change.
- I believed them to be hypoglycemia attacks.
- Attacks after or during a flu or virus
- Attacks after playing in a concert or heavy exertion.
- Affects of the attack lasted 24 to 72 hours
*In My 20’s (1983 – 1992)
- Attacks after performing in concerts
- Besides concerts, attacks were minimal
- Generally treated with rest, diet
- Affects of the attack lasted 24 to 72 hours
*In My 30’s (1993 – 2002)
- Attacks after performing in concerts between ages 30 to 35
- Approximately 5 attacks through the 10 year period
- Affects of the attack lasted 3 to 5 days
- 2000 - high blood pressure and low potassium ER visit
- “Stubborn Blood Pressure” diagnosed
- Affect of attack lasted 2 weeks
*In My 40’s (2003 to present)
2003 – high blood pressure and low potassium ER visit
- Affect of attack lasted 2 -3 weeks
- Low energy and fatigue symptoms
- Body muscle soreness and pain
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness
2004 – 2 attacks within the year
- Home treatment: rest, diet modification
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness
2005 – No known attacks within the year
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness
2006 – 8 documented attacks within the year
- 8 ER visits; ambulance and self admission
- 4 hospital admissions
- Attacks in the workplace and at home
- Affects of attacks last 2 weeks to 3 months (current affect from November 8 attack)
- Lowest documented potassium: 2.8
- Highest documented potassium: 7.6
- High blood pressure issues (220/120)
- Low blood pressure issues (65/40)
- Diagnosed with Type II Diabetes
- Global diet change; lost over 40 lbs in 8 to 12 weeks
- Random glucose tests now show normal range (>100)
- Diagnosed with Sleep Apnea
- Discontinued use of valium and “muscle relaxers”
- Received a CPAP Machine
- Began daily use of Spirinolactone in October
- Put on long term disability in November
- Purchased a Medic Alert bracelet
- Cane necessary for extended normal walking
- Chronic right shoulder pain
- Weakness on right side; arm, shoulder, leg
- Completely changed diet intake;
- 0 to few carbs as possible
- Very low sodium
- No bacon or ham
- Dr. Iyengar, Neurologist, diagnosed HKPP in August
- Dr. Stewart, Nephrologist, additionally diagnosed Primary Aldosteronism in November
Attack symptoms:
- Profuse body sweats
- Often cold and clammy to touch
- Progressive numbing in fingers, hands, feet, limbs, eye lids, jaw
- Unable to sit up under own power
- Unable to walk
- Unable to stand
- Eventual inability to move
- Progressive difficulty in speaking
- Progressive difficulty in breathing (occasional)
- Extreme fatigue
- Muscle spasms in thighs, calves, chest, arms, eyes and eyelids
- “Brain fog” and light-headedness, slow to understand
- Extreme right shoulder pain during
- Neck and shoulder stiffness immediately following
Known Triggers:
- High carbohydrate meals (large servings of pastas, pizza and some large fast food meals)
- High Carbohydrate drink (Starbucks)
- High sodium intake
- Sudden extreme exposure to cold
- Exhausted rest (following a heavy work out or strenuous physical activity at work)
- Saline infusion (flush, IV bag)
- Lignocaine (we think)
- Intense or overwhelming stress
Home Treatments:
- Diet management
- 5 smaller meal approach
- Very low salt
- Very low carb
- Random K+ level testing
- Intentional intake of high potassium foods
- K+ supplements (if needed, non-emergency)
- K+ liquid (if needed, emergency)
- Rest / no heavy excursions
Medical Treatments:
- Routine daily dose of Spironolactone (100MG twice daily)
- Narcotic pain management of daily muscle pain and weakness
- Use of cane for walking
Medical Tests Completed and Considered to date from July 2006 to the present:
Electro-muscular – testing nerve condition in right arm/hand and testing for muscle damage in right arm/hand.
Conclusions:
- Nerves unremarkable
- Verifiable muscle damage in right shoulder/arm. Distinct difference between arms.
Kaiser Genetic testing for 3 of the 14 known gene mutations
Conclusions:
- My genes did not indicate any of the three mutations tested.
- 11 remaining known mutations untested
Kaiser EKG/EEG testing each of the 8 ER visits
Conclusions:
- My tests came back “normal” on some of the ER visits and on some occasions were “abnormal” and considered unusual. Specifically, one such test came back “unusual” when it was given to me during the ambulance ride to the hospital.
Kaiser Chest X-Rays each of the 8 ER visits
Conclusions:
- All X-Rays returned “Negative”
Kaiser Thyroid Lab test
Conclusions:
- Negative for any anomalies
List of known physicians nationally who have diagnosed and currently treat patients with Hypokalemic Period Paralysis:
- Dr. Gwendolyn Claussen (Professor of Neurology) University of Alabama Birmingham
- Dr. Trivedi at the MDA clinic of Dallas
- Dr. Sharon Nations at University of Texas Southwestern Medical Center
- Dr. Gil Wolfe at University of Texas Southwestern Medical Center
- Dr. Tawil in Rochester, New York
- Dr Hills –Neurologist, Oregon
- Dr Reyes – Cardiologist, Oregon
- Dr. David Simpson, Neurologist (MDA Clinic), Garden City, Michigan
This will be a shorter write at this point; I am compiling as much data as I can to put together what I will need to take to the Kaiser Brass, as it were, and demand better care or referral.
I've been suggested to contact and pursue MDA (Muscular Dystrophy Association) in this whole process, so I am checking that out.
Here's a link to an MDA article on Periodic Paralysis from a 1998 Quest edition: http://www.mda.org/publications/Quest/q53periodic.html
Definitely worth the read, though it gets thick towards the end of the article as they describe the nuts and bolts of what Hyper/Hypo Kalemic Periodic Paralysis is.
I'm pooling my memories and understandings into a single Word document and I'll copy that info into this entry as well. I'm not certain I'll leave this entery up, but I did want to get it out where I could read it and digest it.
Attacks Recalled:
*Earliest Recollection: 5 years of age
- Very painful re-entry from anesthesia and surgery
- Body paralysis for 24 hours as a result of surgery/anesthetic
*In the Teen Years (1973 – 1982)
- One to three attacks per year
- Normally treated at home with rest and diet change.
- I believed them to be hypoglycemia attacks.
- Attacks after or during a flu or virus
- Attacks after playing in a concert or heavy exertion.
- Affects of the attack lasted 24 to 72 hours
*In My 20’s (1983 – 1992)
- Attacks after performing in concerts
- Besides concerts, attacks were minimal
- Generally treated with rest, diet
- Affects of the attack lasted 24 to 72 hours
*In My 30’s (1993 – 2002)
- Attacks after performing in concerts between ages 30 to 35
- Approximately 5 attacks through the 10 year period
- Affects of the attack lasted 3 to 5 days
- 2000 - high blood pressure and low potassium ER visit
- “Stubborn Blood Pressure” diagnosed
- Affect of attack lasted 2 weeks
*In My 40’s (2003 to present)
2003 – high blood pressure and low potassium ER visit
- Affect of attack lasted 2 -3 weeks
- Low energy and fatigue symptoms
- Body muscle soreness and pain
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness
2004 – 2 attacks within the year
- Home treatment: rest, diet modification
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness
2005 – No known attacks within the year
- Possible attacks while sleeping
- Daily fatigue and muscle pain and soreness
2006 – 8 documented attacks within the year
- 8 ER visits; ambulance and self admission
- 4 hospital admissions
- Attacks in the workplace and at home
- Affects of attacks last 2 weeks to 3 months (current affect from November 8 attack)
- Lowest documented potassium: 2.8
- Highest documented potassium: 7.6
- High blood pressure issues (220/120)
- Low blood pressure issues (65/40)
- Diagnosed with Type II Diabetes
- Global diet change; lost over 40 lbs in 8 to 12 weeks
- Random glucose tests now show normal range (>100)
- Diagnosed with Sleep Apnea
- Discontinued use of valium and “muscle relaxers”
- Received a CPAP Machine
- Began daily use of Spirinolactone in October
- Put on long term disability in November
- Purchased a Medic Alert bracelet
- Cane necessary for extended normal walking
- Chronic right shoulder pain
- Weakness on right side; arm, shoulder, leg
- Completely changed diet intake;
- 0 to few carbs as possible
- Very low sodium
- No bacon or ham
- Dr. Iyengar, Neurologist, diagnosed HKPP in August
- Dr. Stewart, Nephrologist, additionally diagnosed Primary Aldosteronism in November
Attack symptoms:
- Profuse body sweats
- Often cold and clammy to touch
- Progressive numbing in fingers, hands, feet, limbs, eye lids, jaw
- Unable to sit up under own power
- Unable to walk
- Unable to stand
- Eventual inability to move
- Progressive difficulty in speaking
- Progressive difficulty in breathing (occasional)
- Extreme fatigue
- Muscle spasms in thighs, calves, chest, arms, eyes and eyelids
- “Brain fog” and light-headedness, slow to understand
- Extreme right shoulder pain during
- Neck and shoulder stiffness immediately following
Known Triggers:
- High carbohydrate meals (large servings of pastas, pizza and some large fast food meals)
- High Carbohydrate drink (Starbucks)
- High sodium intake
- Sudden extreme exposure to cold
- Exhausted rest (following a heavy work out or strenuous physical activity at work)
- Saline infusion (flush, IV bag)
- Lignocaine (we think)
- Intense or overwhelming stress
Home Treatments:
- Diet management
- 5 smaller meal approach
- Very low salt
- Very low carb
- Random K+ level testing
- Intentional intake of high potassium foods
- K+ supplements (if needed, non-emergency)
- K+ liquid (if needed, emergency)
- Rest / no heavy excursions
Medical Treatments:
- Routine daily dose of Spironolactone (100MG twice daily)
- Narcotic pain management of daily muscle pain and weakness
- Use of cane for walking
Medical Tests Completed and Considered to date from July 2006 to the present:
Electro-muscular – testing nerve condition in right arm/hand and testing for muscle damage in right arm/hand.
Conclusions:
- Nerves unremarkable
- Verifiable muscle damage in right shoulder/arm. Distinct difference between arms.
Kaiser Genetic testing for 3 of the 14 known gene mutations
Conclusions:
- My genes did not indicate any of the three mutations tested.
- 11 remaining known mutations untested
Kaiser EKG/EEG testing each of the 8 ER visits
Conclusions:
- My tests came back “normal” on some of the ER visits and on some occasions were “abnormal” and considered unusual. Specifically, one such test came back “unusual” when it was given to me during the ambulance ride to the hospital.
Kaiser Chest X-Rays each of the 8 ER visits
Conclusions:
- All X-Rays returned “Negative”
Kaiser Thyroid Lab test
Conclusions:
- Negative for any anomalies
List of known physicians nationally who have diagnosed and currently treat patients with Hypokalemic Period Paralysis:
- Dr. Gwendolyn Claussen (Professor of Neurology) University of Alabama Birmingham
- Dr. Trivedi at the MDA clinic of Dallas
- Dr. Sharon Nations at University of Texas Southwestern Medical Center
- Dr. Gil Wolfe at University of Texas Southwestern Medical Center
- Dr. Tawil in Rochester, New York
- Dr Hills –Neurologist, Oregon
- Dr Reyes – Cardiologist, Oregon
- Dr. David Simpson, Neurologist (MDA Clinic), Garden City, Michigan
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