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
Wednesday, January 17, 2007
Wednesday, January 17, 2007
Wednesday, January 17, 2007
My Friend:
As I wrote on yesterday’s entry, my friend Jared Milos from the Bay Area was on his way up to spend some hours with me and hang out! Well, I didn’t restring my guitars like I should have but I didn’t break a string, so, all was cool. He made it up safe and sound and my prayer is that he has returned safe and sound as well. I had a really good time just hanging out with him and watching some G3 and recording some “Jared“ bass tracks on my “works in progress”. We skipped some of the tunes which weren’t much of an inspiration and he laid down some killer stuff on the tunes he was motivated by. I haven’t played with Jared since we were in MPPC’s Sanctuary Band together back in 2002 and 2003. I don’t remember us being “the” players for the band but we scheduled in when we could and played when our schedules jived. Last night and this morning he was playing a 5 string made in Chicago which sounded impressive simply direct. I wish I could remember the name. Anyway, it was really cool to have my sprits lifted by such kind and caring company.
J, if you read this, you really blessed me and my family by coming up and spending the time here for those few hours. Breakfast was relaxing and fun, just kicking back at Annie’s and chatting.
Missy asked where your truck was when I brought her home from school. When I told her that you had left to head back down to the Bay Area, she got a sad look and said that she was bummed and that she was really looking forward to learning more about you and getting to know “..one of your good friends, daddy”.
Thanks for investing in my kids as well as me, bro.
Medical:
So I’m scheduled for an appointment with the Rheumatology department this Thursday in the morning, and though I expect little progress in that field, it will be helpful to have another check mark on the medical record as to routes we have pursued, appropriately. The ongoing pain is often prohibitive and more than inconvenient. I have not asked the HKPP list yet if folks suffer attacks in their sleep, but I have read some emails where some have woken up with paralysis already having begun, so it is my theory that I could have an abortive attack or a mild paralytic attack which then wreaks havoc on my muscles afterwards. I’m going to email the list my question and will share what I learn once the replies come through. It will be interesting to see what the case is.
As I was more or less suggesting yesterday, I’m pretty certain that I’m dealing with muscular-based pain due to the issues with the fluctuating potassium which is quite possibly caused in part by the Hyperaldosteronism, though a normal factor in HKPP cases is that the potassium deficiency is due to the person’s body’s inability to retain potassium on a cellular level. I don’t know enough yet on these conditions to know if the two can be more related than is suggested by Kaiser; that is to say that Kaiser believes that HKPP is exceptionally rare and nearly impossible to diagnose without administering a saline test or without actually causing a “controlled” attack that they would then “bring the patient back from”. Since we know that saline triggers an attack with me we cannot run that particular test (though some might wish to suggest that the result of the saline being a trigger could be considered some form of “proof”. We also know that I almost died on November 8th due to the effects of the attack I suffered that afternoon and I’m not interested whatsoever in taking that risk ever again.
At this point, there are a few different medicines available for treating, which is to say “controlling” Hyperaldosteronism and those medicines essentially simply medicinally regulate and control the adrenal gland’s output of aldosterone. I take a medicine, Spironolactone, which has a primary purposes which is regulating aldosterone and it has a secondary effect, more of a side effect, really, which is that the medicine causes the body to retain potassium longer than it would “normally” and it regulates my adrenal gland’s secretion of aldosterone which controls my body’s sodium and potassium balance.
Home Front:
CC’s mom, Nana, who lives with us, had a doctor appointment this afternoon regarding her ongoing battle with Multiple Myloma cancer and after being seen by her oncologist, was admitted into UC Davis for dehydration and reactions to the new medication she’s taking for the cancer. I’m guessing shell be in for a few days while they hydrate her and get her meds balanced out again. CC’s up there with her as is her brother Chris. Chris is who took her to the appointment this time; normally it’s CC.
If you would, be praying for God’s touch on her and in her.
Also on the home front, I replaced the alternator on the truck and after it slipped position I put it back in place but the truck’s still not showing that the battery is charging or that the alternator is working. I’m not quite sure where to go from here at this point. I expect it needs to go to a shop and be tested sooner than later. Until then, thank the Lord for battery chargers…
Well, I’m calling it a night.
More tomorrow-
peace
My Friend:
As I wrote on yesterday’s entry, my friend Jared Milos from the Bay Area was on his way up to spend some hours with me and hang out! Well, I didn’t restring my guitars like I should have but I didn’t break a string, so, all was cool. He made it up safe and sound and my prayer is that he has returned safe and sound as well. I had a really good time just hanging out with him and watching some G3 and recording some “Jared“ bass tracks on my “works in progress”. We skipped some of the tunes which weren’t much of an inspiration and he laid down some killer stuff on the tunes he was motivated by. I haven’t played with Jared since we were in MPPC’s Sanctuary Band together back in 2002 and 2003. I don’t remember us being “the” players for the band but we scheduled in when we could and played when our schedules jived. Last night and this morning he was playing a 5 string made in Chicago which sounded impressive simply direct. I wish I could remember the name. Anyway, it was really cool to have my sprits lifted by such kind and caring company.
J, if you read this, you really blessed me and my family by coming up and spending the time here for those few hours. Breakfast was relaxing and fun, just kicking back at Annie’s and chatting.
Missy asked where your truck was when I brought her home from school. When I told her that you had left to head back down to the Bay Area, she got a sad look and said that she was bummed and that she was really looking forward to learning more about you and getting to know “..one of your good friends, daddy”.
Thanks for investing in my kids as well as me, bro.
Medical:
So I’m scheduled for an appointment with the Rheumatology department this Thursday in the morning, and though I expect little progress in that field, it will be helpful to have another check mark on the medical record as to routes we have pursued, appropriately. The ongoing pain is often prohibitive and more than inconvenient. I have not asked the HKPP list yet if folks suffer attacks in their sleep, but I have read some emails where some have woken up with paralysis already having begun, so it is my theory that I could have an abortive attack or a mild paralytic attack which then wreaks havoc on my muscles afterwards. I’m going to email the list my question and will share what I learn once the replies come through. It will be interesting to see what the case is.
As I was more or less suggesting yesterday, I’m pretty certain that I’m dealing with muscular-based pain due to the issues with the fluctuating potassium which is quite possibly caused in part by the Hyperaldosteronism, though a normal factor in HKPP cases is that the potassium deficiency is due to the person’s body’s inability to retain potassium on a cellular level. I don’t know enough yet on these conditions to know if the two can be more related than is suggested by Kaiser; that is to say that Kaiser believes that HKPP is exceptionally rare and nearly impossible to diagnose without administering a saline test or without actually causing a “controlled” attack that they would then “bring the patient back from”. Since we know that saline triggers an attack with me we cannot run that particular test (though some might wish to suggest that the result of the saline being a trigger could be considered some form of “proof”. We also know that I almost died on November 8th due to the effects of the attack I suffered that afternoon and I’m not interested whatsoever in taking that risk ever again.
At this point, there are a few different medicines available for treating, which is to say “controlling” Hyperaldosteronism and those medicines essentially simply medicinally regulate and control the adrenal gland’s output of aldosterone. I take a medicine, Spironolactone, which has a primary purposes which is regulating aldosterone and it has a secondary effect, more of a side effect, really, which is that the medicine causes the body to retain potassium longer than it would “normally” and it regulates my adrenal gland’s secretion of aldosterone which controls my body’s sodium and potassium balance.
Home Front:
CC’s mom, Nana, who lives with us, had a doctor appointment this afternoon regarding her ongoing battle with Multiple Myloma cancer and after being seen by her oncologist, was admitted into UC Davis for dehydration and reactions to the new medication she’s taking for the cancer. I’m guessing shell be in for a few days while they hydrate her and get her meds balanced out again. CC’s up there with her as is her brother Chris. Chris is who took her to the appointment this time; normally it’s CC.
If you would, be praying for God’s touch on her and in her.
Also on the home front, I replaced the alternator on the truck and after it slipped position I put it back in place but the truck’s still not showing that the battery is charging or that the alternator is working. I’m not quite sure where to go from here at this point. I expect it needs to go to a shop and be tested sooner than later. Until then, thank the Lord for battery chargers…
Well, I’m calling it a night.
More tomorrow-
peace
Tuesday, January 16, 2007
Tuesday, January 16, 2007
Tuesday, January 16, 2007
This will cover the last couple day’s events again since I have not managed to discipline myself to writing each night or day. It’s mostly just a matter of priority and discipline. So here’s what’s up:
Orlando:
A couple days ago I read an email on the HKPP list serve about a conference on PP (Periodic Paralysis) in October of this year in Orlando, Florida. The organizers have set it up at the Rosen Centre Hotel in downtown Orlando, a 5 star hotel (their suites, of which 3 are presidential, are all larger than our house…uh, yeah.) with over 1,300 rooms and centrally located in the middle of downtown. The conference is free to members of the PP association (which I am a member) and the conference is featuring guest speakers Dr. Frank Lehmann-Horn and Dr. Karin Jurkat-Rott, authorities on periodic paralysis. Incredibly, the room rate which is a normal $249.00 base rate has been reduced for the conference attendees and their families to $89.00 per night, thanks to the owner of the hotel. It was his decision and graciousness. We’ve made the preliminary reservations to go and have reserved a room for us and a room for my parents as well and will work on affording the trip between now and then. Some of my dad’s family are in Florida as well as a number of other East Coast states so we plan to make this a small family reunion of sorts and stay there for 10 days or so. The hotel management has granted us the discounted rate from October 23 through November 3 with the conference falling on the 27th and 28th of October. We have something to be excited about now for the end of the year; something to look forward to and plan towards. Outside of affording the room stay, I need to rent (for the first time in my life) an electric scooter for my stay there, which will run between $250 and $350 for the time that we’d be there, approximately. I’d never considered, in my most contemplative of nights, that I would need to rent some mode of assisted travel until all of this set in this past year.
Anyway, we are excited about this opportunity to go and learn more, meet the people I’ve been emailing with who suffer from the same thing as me and some in far worse shape than me. A number of folks on the list have immediate family suffering from the same thing and some of them have children with the same paralysis issues as well. I should be thanking God on an hourly basis that my children have not exhibited any symptoms to date and I should NEVER take my health for granted again.
Walking:
We went for a walk/ride on Sunday afternoon to the river. I walked for a little ways then retreated back to the van while the kids and CC went for a ride from the bridge in old town Fair Oaks up to the Hatchery on Hazel. They got in a seriously good ride and were understandably wiped when they returned. I was able to walk about ¼ mile before paying a price and managed to get back to the van without much more issue. I would have had a problem had I walked much further than I did as well as it being silly cold at the time.
While CC and the kids rode up to the hatchery, they saw numerous fishermen in the river and in rowboats in the river; trolling, casting and fly fishing as well. I’m expecting that they were looking for steelhead at this point. I saw one guy in the river in his waders, down near where I was and CC told me of the others up-river, so we packed up the bikes and drove up near the hatchery where we could see the folks fishing. It was a cool day’s outing for the weekend and was time well spent. I took some pics while we were out but can’t find the camera at the moment to post them here. I’ll find them later and get them up for viewing.
I’m walking better today then even yesterday, so I’m hoping that we are on the way back from someplace a few nights ago. I’m not sure if I wrote on my thoughts about this latest pain, but I think I had some form of an attack during the night, due to how badly I felt Saturday morning. I’m learning to not only identify the triggers of the attacks, but I am also learning the characteristics of the pain during the attacks and afterwards and how I feel following the battle.
I just came back from having lunch with Pastor Josh and it was so refreshing, as it always is, to have some time with him. He’s always humble while honest and forthright and the combination of those two qualities are unfortunately NOT as commonplace as we’d like them to be, even within the church itself. He manifests a Paul-like approach which I SO respect and wish I could reflect, even in some simple minor way. Our lunch together was very refreshing for me and calming in some ways as well since being with Josh requires no facades and no masks. You can just be “you” and not feel additionally convicted that your inadequacies are somehow glaringly obvious because he just cares for who you are and how you are instead of who you are acting like or trying hard to be. Hope that makes sense.
I know Josh “gets it” and he “get’s” me as well. If you read this bro, carry on my friend.
Movie: http://www.thetheoryofeverything.com/
Back when I was working at MPPC, Brian Mann was the organist and arranger for all things musical there, essentially and was the “go to” guy for scoring and creating parts within most all musical accompaniments. He’ll likely want to kick my butt for not writing his job responsibilities out correctly, but he’s in Texas now and I’m still in California :-o) …Anyway, his skills as an organist got him the gig but his skills as a musician opened some impressive doors for him as well and thanks to his pursuing the organist job at MPPC, I was blessed with a new friend and colleague with talent that was infectious and impressive. While he was there, a friend of his asked him to score a movie that this friend was creating and so Brian agreed to the task and in doing so gave a number of us who worked with him, the “once in a lifetime” (for most of us) opportunity to be involved in that process. I was blessed to have the opportunity to record the bulk of the audio tracks which were ultimately mixed down in the studio, I think by Robert Iriartborde, I believe (Robert was and is my successor at MPPC) anyway. So Brian sent out an email this afternoon noting that the movie is still alive in some other circles and there are some new trailers for it and they can be viewed at http://www.thetheoryofeverything.com/ How cool is that? I haven’t heard from him in quite some time so it was cool to get included in the email distro, but cooler than that was to check out the movie trailer again and remember the work we did together. The movie was well done and cool.
Jared Milos is on his way up here to spend some hours with me and hang out! Seriously cool. I haven’t been able to see hi other than pictures from his musical endeavors, in a few years now…could be considered several years now, unfortunately. Anyway, he’s a bassist among bassists and a good friend who I’m looking forward to seeing for a visit. Hopefully we’ll get to play around some musically before he splits in the morning to head back down to the Bay Area. If I know what’s good for me, I’ll re-string my guitars right now…we’ll see.
Medical:
I’m scheduled for an appointment with the Rheumatology department this Thursday in the morning, because of my ongoing pain. Though I’m not confident that my pain will be manageable via this particular department, I need to go and rule out those departments which will help in sifting out the department we’re ultimately looking for. We are pretty certain that what I’m dealing with is muscular-based pain due to the issues with the fluctuating potassium. I take a medicine, Spironolactone, which serves two primary purposes: the medicine causes my body to retain potassium longer than it would “normally” and it regulates my adrenal gland’s secretion of aldosterone which controls my body’s sodium and potassium.
Well, I’m mid-way through a thought but want to get this posted, so I’ll continue tomorrow perhaps…
-peace
This will cover the last couple day’s events again since I have not managed to discipline myself to writing each night or day. It’s mostly just a matter of priority and discipline. So here’s what’s up:
Orlando:
A couple days ago I read an email on the HKPP list serve about a conference on PP (Periodic Paralysis) in October of this year in Orlando, Florida. The organizers have set it up at the Rosen Centre Hotel in downtown Orlando, a 5 star hotel (their suites, of which 3 are presidential, are all larger than our house…uh, yeah.) with over 1,300 rooms and centrally located in the middle of downtown. The conference is free to members of the PP association (which I am a member) and the conference is featuring guest speakers Dr. Frank Lehmann-Horn and Dr. Karin Jurkat-Rott, authorities on periodic paralysis. Incredibly, the room rate which is a normal $249.00 base rate has been reduced for the conference attendees and their families to $89.00 per night, thanks to the owner of the hotel. It was his decision and graciousness. We’ve made the preliminary reservations to go and have reserved a room for us and a room for my parents as well and will work on affording the trip between now and then. Some of my dad’s family are in Florida as well as a number of other East Coast states so we plan to make this a small family reunion of sorts and stay there for 10 days or so. The hotel management has granted us the discounted rate from October 23 through November 3 with the conference falling on the 27th and 28th of October. We have something to be excited about now for the end of the year; something to look forward to and plan towards. Outside of affording the room stay, I need to rent (for the first time in my life) an electric scooter for my stay there, which will run between $250 and $350 for the time that we’d be there, approximately. I’d never considered, in my most contemplative of nights, that I would need to rent some mode of assisted travel until all of this set in this past year.
Anyway, we are excited about this opportunity to go and learn more, meet the people I’ve been emailing with who suffer from the same thing as me and some in far worse shape than me. A number of folks on the list have immediate family suffering from the same thing and some of them have children with the same paralysis issues as well. I should be thanking God on an hourly basis that my children have not exhibited any symptoms to date and I should NEVER take my health for granted again.
Walking:
We went for a walk/ride on Sunday afternoon to the river. I walked for a little ways then retreated back to the van while the kids and CC went for a ride from the bridge in old town Fair Oaks up to the Hatchery on Hazel. They got in a seriously good ride and were understandably wiped when they returned. I was able to walk about ¼ mile before paying a price and managed to get back to the van without much more issue. I would have had a problem had I walked much further than I did as well as it being silly cold at the time.
While CC and the kids rode up to the hatchery, they saw numerous fishermen in the river and in rowboats in the river; trolling, casting and fly fishing as well. I’m expecting that they were looking for steelhead at this point. I saw one guy in the river in his waders, down near where I was and CC told me of the others up-river, so we packed up the bikes and drove up near the hatchery where we could see the folks fishing. It was a cool day’s outing for the weekend and was time well spent. I took some pics while we were out but can’t find the camera at the moment to post them here. I’ll find them later and get them up for viewing.
I’m walking better today then even yesterday, so I’m hoping that we are on the way back from someplace a few nights ago. I’m not sure if I wrote on my thoughts about this latest pain, but I think I had some form of an attack during the night, due to how badly I felt Saturday morning. I’m learning to not only identify the triggers of the attacks, but I am also learning the characteristics of the pain during the attacks and afterwards and how I feel following the battle.
I just came back from having lunch with Pastor Josh and it was so refreshing, as it always is, to have some time with him. He’s always humble while honest and forthright and the combination of those two qualities are unfortunately NOT as commonplace as we’d like them to be, even within the church itself. He manifests a Paul-like approach which I SO respect and wish I could reflect, even in some simple minor way. Our lunch together was very refreshing for me and calming in some ways as well since being with Josh requires no facades and no masks. You can just be “you” and not feel additionally convicted that your inadequacies are somehow glaringly obvious because he just cares for who you are and how you are instead of who you are acting like or trying hard to be. Hope that makes sense.
I know Josh “gets it” and he “get’s” me as well. If you read this bro, carry on my friend.
Movie: http://www.thetheoryofeverything.com/
Back when I was working at MPPC, Brian Mann was the organist and arranger for all things musical there, essentially and was the “go to” guy for scoring and creating parts within most all musical accompaniments. He’ll likely want to kick my butt for not writing his job responsibilities out correctly, but he’s in Texas now and I’m still in California :-o) …Anyway, his skills as an organist got him the gig but his skills as a musician opened some impressive doors for him as well and thanks to his pursuing the organist job at MPPC, I was blessed with a new friend and colleague with talent that was infectious and impressive. While he was there, a friend of his asked him to score a movie that this friend was creating and so Brian agreed to the task and in doing so gave a number of us who worked with him, the “once in a lifetime” (for most of us) opportunity to be involved in that process. I was blessed to have the opportunity to record the bulk of the audio tracks which were ultimately mixed down in the studio, I think by Robert Iriartborde, I believe (Robert was and is my successor at MPPC) anyway. So Brian sent out an email this afternoon noting that the movie is still alive in some other circles and there are some new trailers for it and they can be viewed at http://www.thetheoryofeverything.com/ How cool is that? I haven’t heard from him in quite some time so it was cool to get included in the email distro, but cooler than that was to check out the movie trailer again and remember the work we did together. The movie was well done and cool.
Jared Milos is on his way up here to spend some hours with me and hang out! Seriously cool. I haven’t been able to see hi other than pictures from his musical endeavors, in a few years now…could be considered several years now, unfortunately. Anyway, he’s a bassist among bassists and a good friend who I’m looking forward to seeing for a visit. Hopefully we’ll get to play around some musically before he splits in the morning to head back down to the Bay Area. If I know what’s good for me, I’ll re-string my guitars right now…we’ll see.
Medical:
I’m scheduled for an appointment with the Rheumatology department this Thursday in the morning, because of my ongoing pain. Though I’m not confident that my pain will be manageable via this particular department, I need to go and rule out those departments which will help in sifting out the department we’re ultimately looking for. We are pretty certain that what I’m dealing with is muscular-based pain due to the issues with the fluctuating potassium. I take a medicine, Spironolactone, which serves two primary purposes: the medicine causes my body to retain potassium longer than it would “normally” and it regulates my adrenal gland’s secretion of aldosterone which controls my body’s sodium and potassium.
Well, I’m mid-way through a thought but want to get this posted, so I’ll continue tomorrow perhaps…
-peace
Saturday, January 13, 2007
Saturday, January 13, 2007
Saturday, January 13, 2007
This will cover the last couple day’s events and all. In this moment right now, I’m struggling to walk. My left leg and hip are very uncooperative and painful to move. Putting weight on it was not so much an option, as I found out when I got out of bed. CC just called from the van on her way home from work (around 11:15) and asked it I’ve checked my levels (K+) this morning yet, which I have not. I have to wait until I’ve had no food or drink for at least twenty minutes before I can test. I have about 10 more minutes now and then I’ll check. This pain is reminiscent of my hospital stay which is discouraging and hard to deal with. Though I take methadone and endocet (Percocet), the amount I take is quite minimal on a daily basis so I have nothing to handle the extraordinary pain versus the ordinary pain. Time to test for the potassium (K+). I just tried the test and it needs to be calibrated again, so no test for the time being until I stop everything and calibrate the unit again. The instructions state that the device must be calibrated once a month and it’s been a little over that now. A little more writing, then calibration.
On my mind; yesterday was a milestone. Not one I’m necessarily proud of or desiring of remembering, but since I’m writing, it’s worth noting; we went to Kaiser and picked up the DMV paperwork for a handicap placard and went to DMV and were given a permanent handicap placard. I guess when I had asked for it previously, I had expected a response something like “This is only temporary, Wade, you don’t need a placard and besides, you’ll feel better each day and shortly all of this will be behind you with no need for a placard.” The notation on the request form was for permanent use of a placard with chronic pain and muscle disease being the cause for the request. I guess that shows one of my dreams that won’t come true at this point. The other is more a nightmare than dream that hasn’t happened yet which is “the other shoe falling”, in other words, another attack of paralysis. Tonight is a dinner party at my aunt and uncle’s for my cousin’s birthday, but if I don’t feel better by then, I’ll not be going anywhere feeling like this. Pain tends to breed anger within me so it’s fairly consuming battle at this point.
I just finished calibrating the Cardy meter and my K+ is 4.2 which is within the “normal” range, but we have learned since having the meter that I experience pain under a K+ level of 4.8 and painful, paralytic symptoms if my potassium drops or is in the 3.9 or below range. Wow. Today is a really hard day. I’m on the couch with a couple cushions underneath my knees in an effort to take pressure off my back and torso in hopes that this will help.
A few hours have passed, it’s 7:00 PM and CC, the kids and her mom have gone over to my aunt’s place in Roseville since I really didn’t want to travel or visit like this. The house is pretty quiet, almost restful in a sense. Taking the time to just stay down is a very hard choice to make when there’s so much activity going on around me and especially when I feel like I’m not contributing. Yeah, of course I get that I can hardly walk on the one hand, but that doesn’t carry much weight when I’m not helping. It seems just that basic to me.
On the ongoing medical front, yesterday morning I received an email from my neurologist regarding further testing in regards to HKPP and his email was startling; he intends to pursue no more HKPP tests and is expecting me to follow up all future efforts with my nephrologist. Essentially, he’s bailing out of my care, completely. Why? CC and I think because his diagnosis was questioned by the neurologist in Walnut Creek and he’s out of his area of specialty. Had the second opinion doctor agreed with him, I believe he would have moved forward in some manner with my care, but since his diagnosis was questioned, I think he’d rather give up and focus on patients that he has familiarity with and confidence in treating. This is a pretty solid indication that Kaiser has no clue about HKPP, its characteristics or its treatment. I’m not ungrateful for their care of me, by any means. I’m alive right now, typing this blog because on that Wednesday in November they saved my life, simple as that. I’m frustrated that we have yet to receive consistent and knowledgeable care regarding my original diagnosis of HKPP. My primary doctor, though no more knowledgeable on HKPP than ANYONE else in Kaiser, has been more than cooperative and helpful in meeting my daily and normal care. Also worth noting is that he agreed to research and begin to learn about HKPP on my request, which I truly respect and appreciate. It will likely be through him that any further progress is made, at least medically.
Just after receiving the email from the neurologist, I began a more intentional comparison between HKPP and Hyper Aldosteronism (also known as Primary Aldosteronism) and though there are definite similarities and common symptoms, PA does not answer the questions as to why I hurt as much as I do and why I’ve had the experiences I’ve had. CC figured out that PA is one of the underlying causes of HKPP, so it should not simply be an “either or’ type of scenario with this.
More to be learned, I guess.
Here's the comparison I assembled:
Hyperaldosteronism/Primary Aldosteronism:
What:
Primary aldosteronism is a condition which your body's adrenal glands produce too much of the hormone aldosterone, causing you to retain sodium and lose potassium.
Sodium and potassium normally work together to help maintain the right balance of fluids in your body, transmit nerve impulses, and contract and relax your muscles. But excess aldosterone causes sodium retention, which in turn retains excess water, increasing your blood volume and blood pressure.
Doctors once considered primary aldosteronism rare. However, as screening for primary aldosteronism becomes more common, evidence is emerging that it may be responsible for as many as one in eight cases of high blood pressure.
Primary aldosteronism is more common in people with severe, uncontrolled high blood pressure. Treatment for primary aldosteronism depends on the underlying cause. Treatment options include medications, lifestyle modifications and surgery.
Symptoms:
High blood pressure that doesn't respond completely to medication is the most common sign of primary aldosteronism. Other common signs include low potassium levels (hypokalemia) and the presence of a non-cancerous (benign) tumor on one or both of the adrenal glands.
Symptoms of this condition may include:
- Headache
- Muscle weakness and cramps
- Fatigue
- Temporary paralysis
- Numbness
- Pricking, tingling sensation
- Excessive thirst
- Excessive urination
Causes:
Your adrenal glands are about half the size of your thumb, and they dictate much of what happens in your body.
They produce hormones that help regulate your metabolism, immune system, blood pressure and other essential functions.
One such hormone is aldosterone, which manages your body's balance of sodium and potassium. In primary aldosteronism, your body produces too much of this hormone, causing you to retain sodium and lose potassium.
The most common known cause of primary aldosteronism is a benign growth (aldosteronoma) in an adrenal gland — a condition also known as Conn's syndrome.
Other causes include:
- Over-activity of both adrenal glands (bilateral adrenal hyperplasia)
- Rarely, cancerous (malignant) growths in the outer layer (cortex) of the adrenal gland
- Rarely, genetic mutations
A rare type of primary aldosteronism called glucocorticoid-remediable aldosteronism (GRA) runs in families. This condition may cause high blood pressure in children and young adults. Genetic testing can identify people at risk.
Hypokalemic Periodic Paralysis
(HKPP)
What:
Hypokalemic Periodic Paralysis is a rare inherited muscle disorder that causes episodes of paralysis or weakness.
During episodes of muscle weakness, potassium flows from the bloodstream into muscle cells, affecting the ability of the cell to contract properly. Potassium levels usually fall during attacks but are normal between attacks.
Symptoms:
Patients may:
· Become totally unable to move
· Appear unconscious
· Unable to speak or open their eyes
· Typically begin showing symptoms in the first or second decade of life
· Experience progressive attacks in frequency and degrees
· Experience episodes lasting anywhere from an hour to days
· Experience attacks that vary in intensity from episode to episode, with mild localized weakness in a hand, foot, jaw or limbs one time and generalized paralysis the next.
· Experience extreme muscle tenderness and aching or be entirely painless
· Experience “Abortive Attacks” which are characterized by fluctuating daily weakness which lasts for extended periods. These have been mistaken for permanent weakness (This type of weakness becomes more common in patients as they enter their 40s and in some patients abortive episodes may replace paralytic episodes. Patients often find abortive attacks are more disabling than brief episodes of paralysis.)
Causes:
Periodic paralyses are caused by abnormalities in the ion channels (especially the sodium and calcium channels) of the muscle membrane. The ion channels control the movement of sodium, chloride, potassium and calcium across the cell membrane and from one cell compartment to another. This movement of ions produces the electrical 'spark' which allows our muscles to move. Hypokalemic Periodic Paralysis is caused by a flaw in an ion channel in the muscle membrane. This flaw makes the person with HypoKPP extremely sensitive to decreases in serum potassium that wouldn't bother the average person. Anyone can be made weak by a drastic lowering of serum potassium, but the person with HypoKPP gets weak with even a slight fall in potassium level, and patients with HypoKPP may become profoundly paralyzed while their potassium levels remain within normal limits.
~~~~~
On yet another front, I’ve been continuing to write some lyrics and am now up to 11 sets of lyrics. I’ve only matched one of them to a song that I put together which is probably par for my course; I’ve never been one to prefer to write and arrange alone. I like to collaborate and create with a partner. That’s much more fun and even exciting at times, to see what someone else is thinking and interpreting differently than me and yet still going for the same goal, topically or emotionally. I’m looking forward to writing more.
My truck has been “down” for several weeks now with what we (my dad, me and some of his colleagues) have surmised to be a dead alternator. I replaced it a couple days ago when the money was available and it worked fine for a day then it stopped working. I went under the hood and found that the alternator had slipped from its position due to some of the washers on the bolt slipping. I need to reposition it before I drive again; maybe tomorrow if I can walk and move better and more painlessly.
The kids have begun to play with PowerPoint on the computers and watching their unbridled creativity is inspiring and fun for us. They haven’t gotten very far in their presentations but are now asking to work on them as often as they ask to play computer games and watch TV. Pretty cool in my opinion.
Yesterday was ANOTHER milestone in CC’s life; she and I went and picked up her first pair of glasses since her early childhood. To say she’s not so excited is an understatement…she’s not very happy that she needs glasses now, but she does accept that her recent headaches and eye pain have been because of her eyes needing the help of glasses and not having them. I think the ones she bought look really attractive on her. It’s going to take some time for her to acclimate to wearing them, so your prayers on that will be appreciated.
Before all the pain began manifesting itself in the past couple days, I managed to strike all the outside Christmas décor form the house so all we have to do now is finish the clean out from the inside and get the boxes back up in the garage loft.
There’s some more to write, but I’m tired and have had enough for one day.
For those who pray, please be praying for a restful night’s sleep and a painless day tomorrow.
G’night.
This will cover the last couple day’s events and all. In this moment right now, I’m struggling to walk. My left leg and hip are very uncooperative and painful to move. Putting weight on it was not so much an option, as I found out when I got out of bed. CC just called from the van on her way home from work (around 11:15) and asked it I’ve checked my levels (K+) this morning yet, which I have not. I have to wait until I’ve had no food or drink for at least twenty minutes before I can test. I have about 10 more minutes now and then I’ll check. This pain is reminiscent of my hospital stay which is discouraging and hard to deal with. Though I take methadone and endocet (Percocet), the amount I take is quite minimal on a daily basis so I have nothing to handle the extraordinary pain versus the ordinary pain. Time to test for the potassium (K+). I just tried the test and it needs to be calibrated again, so no test for the time being until I stop everything and calibrate the unit again. The instructions state that the device must be calibrated once a month and it’s been a little over that now. A little more writing, then calibration.
On my mind; yesterday was a milestone. Not one I’m necessarily proud of or desiring of remembering, but since I’m writing, it’s worth noting; we went to Kaiser and picked up the DMV paperwork for a handicap placard and went to DMV and were given a permanent handicap placard. I guess when I had asked for it previously, I had expected a response something like “This is only temporary, Wade, you don’t need a placard and besides, you’ll feel better each day and shortly all of this will be behind you with no need for a placard.” The notation on the request form was for permanent use of a placard with chronic pain and muscle disease being the cause for the request. I guess that shows one of my dreams that won’t come true at this point. The other is more a nightmare than dream that hasn’t happened yet which is “the other shoe falling”, in other words, another attack of paralysis. Tonight is a dinner party at my aunt and uncle’s for my cousin’s birthday, but if I don’t feel better by then, I’ll not be going anywhere feeling like this. Pain tends to breed anger within me so it’s fairly consuming battle at this point.
I just finished calibrating the Cardy meter and my K+ is 4.2 which is within the “normal” range, but we have learned since having the meter that I experience pain under a K+ level of 4.8 and painful, paralytic symptoms if my potassium drops or is in the 3.9 or below range. Wow. Today is a really hard day. I’m on the couch with a couple cushions underneath my knees in an effort to take pressure off my back and torso in hopes that this will help.
A few hours have passed, it’s 7:00 PM and CC, the kids and her mom have gone over to my aunt’s place in Roseville since I really didn’t want to travel or visit like this. The house is pretty quiet, almost restful in a sense. Taking the time to just stay down is a very hard choice to make when there’s so much activity going on around me and especially when I feel like I’m not contributing. Yeah, of course I get that I can hardly walk on the one hand, but that doesn’t carry much weight when I’m not helping. It seems just that basic to me.
On the ongoing medical front, yesterday morning I received an email from my neurologist regarding further testing in regards to HKPP and his email was startling; he intends to pursue no more HKPP tests and is expecting me to follow up all future efforts with my nephrologist. Essentially, he’s bailing out of my care, completely. Why? CC and I think because his diagnosis was questioned by the neurologist in Walnut Creek and he’s out of his area of specialty. Had the second opinion doctor agreed with him, I believe he would have moved forward in some manner with my care, but since his diagnosis was questioned, I think he’d rather give up and focus on patients that he has familiarity with and confidence in treating. This is a pretty solid indication that Kaiser has no clue about HKPP, its characteristics or its treatment. I’m not ungrateful for their care of me, by any means. I’m alive right now, typing this blog because on that Wednesday in November they saved my life, simple as that. I’m frustrated that we have yet to receive consistent and knowledgeable care regarding my original diagnosis of HKPP. My primary doctor, though no more knowledgeable on HKPP than ANYONE else in Kaiser, has been more than cooperative and helpful in meeting my daily and normal care. Also worth noting is that he agreed to research and begin to learn about HKPP on my request, which I truly respect and appreciate. It will likely be through him that any further progress is made, at least medically.
Just after receiving the email from the neurologist, I began a more intentional comparison between HKPP and Hyper Aldosteronism (also known as Primary Aldosteronism) and though there are definite similarities and common symptoms, PA does not answer the questions as to why I hurt as much as I do and why I’ve had the experiences I’ve had. CC figured out that PA is one of the underlying causes of HKPP, so it should not simply be an “either or’ type of scenario with this.
More to be learned, I guess.
Here's the comparison I assembled:
Hyperaldosteronism/Primary Aldosteronism:
What:
Primary aldosteronism is a condition which your body's adrenal glands produce too much of the hormone aldosterone, causing you to retain sodium and lose potassium.
Sodium and potassium normally work together to help maintain the right balance of fluids in your body, transmit nerve impulses, and contract and relax your muscles. But excess aldosterone causes sodium retention, which in turn retains excess water, increasing your blood volume and blood pressure.
Doctors once considered primary aldosteronism rare. However, as screening for primary aldosteronism becomes more common, evidence is emerging that it may be responsible for as many as one in eight cases of high blood pressure.
Primary aldosteronism is more common in people with severe, uncontrolled high blood pressure. Treatment for primary aldosteronism depends on the underlying cause. Treatment options include medications, lifestyle modifications and surgery.
Symptoms:
High blood pressure that doesn't respond completely to medication is the most common sign of primary aldosteronism. Other common signs include low potassium levels (hypokalemia) and the presence of a non-cancerous (benign) tumor on one or both of the adrenal glands.
Symptoms of this condition may include:
- Headache
- Muscle weakness and cramps
- Fatigue
- Temporary paralysis
- Numbness
- Pricking, tingling sensation
- Excessive thirst
- Excessive urination
Causes:
Your adrenal glands are about half the size of your thumb, and they dictate much of what happens in your body.
They produce hormones that help regulate your metabolism, immune system, blood pressure and other essential functions.
One such hormone is aldosterone, which manages your body's balance of sodium and potassium. In primary aldosteronism, your body produces too much of this hormone, causing you to retain sodium and lose potassium.
The most common known cause of primary aldosteronism is a benign growth (aldosteronoma) in an adrenal gland — a condition also known as Conn's syndrome.
Other causes include:
- Over-activity of both adrenal glands (bilateral adrenal hyperplasia)
- Rarely, cancerous (malignant) growths in the outer layer (cortex) of the adrenal gland
- Rarely, genetic mutations
A rare type of primary aldosteronism called glucocorticoid-remediable aldosteronism (GRA) runs in families. This condition may cause high blood pressure in children and young adults. Genetic testing can identify people at risk.
Hypokalemic Periodic Paralysis
(HKPP)
What:
Hypokalemic Periodic Paralysis is a rare inherited muscle disorder that causes episodes of paralysis or weakness.
During episodes of muscle weakness, potassium flows from the bloodstream into muscle cells, affecting the ability of the cell to contract properly. Potassium levels usually fall during attacks but are normal between attacks.
Symptoms:
Patients may:
· Become totally unable to move
· Appear unconscious
· Unable to speak or open their eyes
· Typically begin showing symptoms in the first or second decade of life
· Experience progressive attacks in frequency and degrees
· Experience episodes lasting anywhere from an hour to days
· Experience attacks that vary in intensity from episode to episode, with mild localized weakness in a hand, foot, jaw or limbs one time and generalized paralysis the next.
· Experience extreme muscle tenderness and aching or be entirely painless
· Experience “Abortive Attacks” which are characterized by fluctuating daily weakness which lasts for extended periods. These have been mistaken for permanent weakness (This type of weakness becomes more common in patients as they enter their 40s and in some patients abortive episodes may replace paralytic episodes. Patients often find abortive attacks are more disabling than brief episodes of paralysis.)
Causes:
Periodic paralyses are caused by abnormalities in the ion channels (especially the sodium and calcium channels) of the muscle membrane. The ion channels control the movement of sodium, chloride, potassium and calcium across the cell membrane and from one cell compartment to another. This movement of ions produces the electrical 'spark' which allows our muscles to move. Hypokalemic Periodic Paralysis is caused by a flaw in an ion channel in the muscle membrane. This flaw makes the person with HypoKPP extremely sensitive to decreases in serum potassium that wouldn't bother the average person. Anyone can be made weak by a drastic lowering of serum potassium, but the person with HypoKPP gets weak with even a slight fall in potassium level, and patients with HypoKPP may become profoundly paralyzed while their potassium levels remain within normal limits.
~~~~~
On yet another front, I’ve been continuing to write some lyrics and am now up to 11 sets of lyrics. I’ve only matched one of them to a song that I put together which is probably par for my course; I’ve never been one to prefer to write and arrange alone. I like to collaborate and create with a partner. That’s much more fun and even exciting at times, to see what someone else is thinking and interpreting differently than me and yet still going for the same goal, topically or emotionally. I’m looking forward to writing more.
My truck has been “down” for several weeks now with what we (my dad, me and some of his colleagues) have surmised to be a dead alternator. I replaced it a couple days ago when the money was available and it worked fine for a day then it stopped working. I went under the hood and found that the alternator had slipped from its position due to some of the washers on the bolt slipping. I need to reposition it before I drive again; maybe tomorrow if I can walk and move better and more painlessly.
The kids have begun to play with PowerPoint on the computers and watching their unbridled creativity is inspiring and fun for us. They haven’t gotten very far in their presentations but are now asking to work on them as often as they ask to play computer games and watch TV. Pretty cool in my opinion.
Yesterday was ANOTHER milestone in CC’s life; she and I went and picked up her first pair of glasses since her early childhood. To say she’s not so excited is an understatement…she’s not very happy that she needs glasses now, but she does accept that her recent headaches and eye pain have been because of her eyes needing the help of glasses and not having them. I think the ones she bought look really attractive on her. It’s going to take some time for her to acclimate to wearing them, so your prayers on that will be appreciated.
Before all the pain began manifesting itself in the past couple days, I managed to strike all the outside Christmas décor form the house so all we have to do now is finish the clean out from the inside and get the boxes back up in the garage loft.
There’s some more to write, but I’m tired and have had enough for one day.
For those who pray, please be praying for a restful night’s sleep and a painless day tomorrow.
G’night.
Thursday, January 11, 2007
Addendum to Thursday the 11th
Thursday, January 11, 2006 addendum
This morning has been more of a downer in terms of my attitude. Partly due to my being up late and then getting up at 5:00 AM to wake up Missy, so I know that my state of energy has a direct reflection on my disposition, but I also called the insurance carrier for the disability to confirm what I had been told via friends and such, which is that my disability is non-tax and so the 60% I will receive will be of the gross income. Unfortunately, that is not the case with private carriers. It IS the case with State Disability which is likely what everyone was thinking. My income will be taxable and thus will be 60% of my take home amount and be literally 40% less than what I was bringing home.
I feel like I'm playing a life-game of the old game "Battleship" and it feels like, no matter where my ships are located on the board, I'm taking hits on each and every turn. I'm certain that's not accurate and I have NO desire to know that for a fact, but that is certainly how it feels this morning. It's so frustrating.
I guess I just need to continue to ask for prayers in a global sense; for emotional state, attitude, insight and awareness to see God's hand and control in this slow moving Category 4 tornado in my family's life, for financial balance and relief, for direction in every sense and for a sense of His caring shelter within the storm.
I realise that what I am experiencing could, in fact, be His protection and that He's carrying us right now even though we feel tired and worn as if from walking. I don't know is the bottom line but I don't want things to progress worse for me to get the "correct" perspective if I'm wrong.
*sigh*
-w
This morning has been more of a downer in terms of my attitude. Partly due to my being up late and then getting up at 5:00 AM to wake up Missy, so I know that my state of energy has a direct reflection on my disposition, but I also called the insurance carrier for the disability to confirm what I had been told via friends and such, which is that my disability is non-tax and so the 60% I will receive will be of the gross income. Unfortunately, that is not the case with private carriers. It IS the case with State Disability which is likely what everyone was thinking. My income will be taxable and thus will be 60% of my take home amount and be literally 40% less than what I was bringing home.
I feel like I'm playing a life-game of the old game "Battleship" and it feels like, no matter where my ships are located on the board, I'm taking hits on each and every turn. I'm certain that's not accurate and I have NO desire to know that for a fact, but that is certainly how it feels this morning. It's so frustrating.
I guess I just need to continue to ask for prayers in a global sense; for emotional state, attitude, insight and awareness to see God's hand and control in this slow moving Category 4 tornado in my family's life, for financial balance and relief, for direction in every sense and for a sense of His caring shelter within the storm.
I realise that what I am experiencing could, in fact, be His protection and that He's carrying us right now even though we feel tired and worn as if from walking. I don't know is the bottom line but I don't want things to progress worse for me to get the "correct" perspective if I'm wrong.
*sigh*
-w
January 11, 2007: Thursday morning
I realized as I lay awake in bed at 11:30 PM last night (just an hour ago) that I had iced tea this evening, and not just one glass of Red Robbin caffeinated iced tea, but 4 or 5 glasses of Red Robbin caffeinated iced tea. I took a sleep-gel cap 30 minutes ago and am waiting for the cavalry to arrive. Until then, the mind is flying and I'm locked into the seat until then.
I've realised another point of prayer: please pray for the housing market to rise in our area of Citrus Heights so we can have some options in our home and living. I have been counseled to be specific in our prayers, so here is one such specific. I know and believe that God is a God of specifics (take a look at the ark and the Ark of the Covenant) so I am going to be more specific. I was about to write "...so I am going to try to be more specific." and then heard my own words that I spoke to Joshua this evening as he said "I'm going to try and do better in class; really try and I'm going to try and not talk so much in class too." and I responded in true Yoda-like fashion, "Don't try. Do it. Trying implies the acceptance of not achieving your goal and we both know you are strong enough to succeed in what you know you need to do, so do it, don't try to do it. And I believe in you, Joshua. Mommy and I both do."
Nothing quite like self-conviction in real time.
Tag. I'm it...
I've realised another point of prayer: please pray for the housing market to rise in our area of Citrus Heights so we can have some options in our home and living. I have been counseled to be specific in our prayers, so here is one such specific. I know and believe that God is a God of specifics (take a look at the ark and the Ark of the Covenant) so I am going to be more specific. I was about to write "...so I am going to try to be more specific." and then heard my own words that I spoke to Joshua this evening as he said "I'm going to try and do better in class; really try and I'm going to try and not talk so much in class too." and I responded in true Yoda-like fashion, "Don't try. Do it. Trying implies the acceptance of not achieving your goal and we both know you are strong enough to succeed in what you know you need to do, so do it, don't try to do it. And I believe in you, Joshua. Mommy and I both do."
Nothing quite like self-conviction in real time.
Tag. I'm it...
Wednesday, January 10, 2007
Wednesday, January 10, 2007 - short
Wednesday, January 10, 2007
Hey there-
Well, there’s much going on right now, much thinking and praying to be done. Much analyzing and discerning to be accomplished.
Your prayers for us and for that are coveted.
There won’t be much to write right now and I’ll share more in the days to come, but we need prayer to be our platform on which we construct our lives and right now is certainly no exception.
There’ve been no prayer requests coming through form folks, so I’m figuring that to be a good thing in folks’ lives and hope that all is well. Use the blog if you wish to, it’s there for that purpose.
I expect, more tomorrow-
peace
Hey there-
Well, there’s much going on right now, much thinking and praying to be done. Much analyzing and discerning to be accomplished.
Your prayers for us and for that are coveted.
There won’t be much to write right now and I’ll share more in the days to come, but we need prayer to be our platform on which we construct our lives and right now is certainly no exception.
There’ve been no prayer requests coming through form folks, so I’m figuring that to be a good thing in folks’ lives and hope that all is well. Use the blog if you wish to, it’s there for that purpose.
I expect, more tomorrow-
peace
Sunday, January 07, 2007
Sunday Morning, January 7
Sunday, January 07, 2007
Today is a good Sunday, so far…not that it should be a “bad” Sunday in some sort of opposition, but it’s been a pretty good morning, which is cool. We went to First Pres. Roseville where my buddy Craig runs shop. The sound was good and the mics were nicely dialed in and sounded very natural. He’s done a very good job there. The mix was different than if The Fetter'd One had been mixing, I believe, but not a bad mix. Guitar solos were prominent when they were supposed to be as was a bass solo. Craig was overseeing the volunteer crew he has for the weekends and I think mixes the 11:00 traditional service in the Sanctuary. I hope to catch a Sunday mix there where Craig is at the desk. We also go to see Beth as she arrived for the 9:45 service; very cool. They’re a blessing wherever they go, in my opinion.
Yesterday was a very good day. A first in our family’s history, believe it or not, we drove up into Nevada City to a State Park up there and road our mountain bikes. Yes, even me for a short ride. How cool is that?! 
We just played it by ear and let me set the pace for the most part. Price today is being somewhat sore as expected, actually less sore than I was expecting to be. It had snowed the night before so there was even some light snow on the ground as we rode through part of the mining park. I was SUPER proud of us and pleased to have ACTUALLY gotten out and done something physical. 
Returning to the van, we found that when one mountain bikes on somewhat wet and muddy paths…one can get, um….muddy? Joshy’s bike is in serious need of a bath, as are our bikes as well. When Joshy got off his bike at the van, he exclaimed “My bike is TRASHED! That’s awesome! It’s because I’m such a fast rider, huh?” Very cool and very dirty.
I caned the evening as we walked through several of the Nevada City shops before leaving the area around 5 or 6PM. Just the day before, I needed the cane for mobility without added pain, so, though this physical roller coaster is obnoxious on it’s nicest of days, I need to set my goals and pursue them in spite of my pain and limitations.
Yesterday was a clear victory and example of that. Our family day out concluded with dinner at the Roseville Chili’s, thanks to a Christmas blessing from some very good friends of mine, Greg and Sue.
School begins tomorrow for the kids and for, subsequently, so no more leisurely mornings. Gone, big time. Missy now gets up at 5:00AM to get ready for school, right about the time CC is leaving to go to work.
More phone calls and emails for tomorrow as I try to figure out where to go from where we are now, medically and strategically.
Don’t forget to check out the prayer blog at http://prayersandintercessions.blogspot.com/ and you are welcome to email me any requests you may have and I’ll post them on the site indefinitely, more or less, until we have an answer to prayer or until you ask them to be removed or something like that. I’m a sincere believer in prayer but I’m the last in line when it comes to being consistent in it, at least at this point in my life. I’m striving to change that, not not striving as hard as I could, I’m sure. A little conviction with my writing…hhmmmm.
Maybe more later or maybe just tomorrow.
Blessings. Peace-
Today is a good Sunday, so far…not that it should be a “bad” Sunday in some sort of opposition, but it’s been a pretty good morning, which is cool. We went to First Pres. Roseville where my buddy Craig runs shop. The sound was good and the mics were nicely dialed in and sounded very natural. He’s done a very good job there. The mix was different than if The Fetter'd One had been mixing, I believe, but not a bad mix. Guitar solos were prominent when they were supposed to be as was a bass solo. Craig was overseeing the volunteer crew he has for the weekends and I think mixes the 11:00 traditional service in the Sanctuary. I hope to catch a Sunday mix there where Craig is at the desk. We also go to see Beth as she arrived for the 9:45 service; very cool. They’re a blessing wherever they go, in my opinion.
Yesterday was a very good day. A first in our family’s history, believe it or not, we drove up into Nevada City to a State Park up there and road our mountain bikes. Yes, even me for a short ride. How cool is that?! 
We just played it by ear and let me set the pace for the most part. Price today is being somewhat sore as expected, actually less sore than I was expecting to be. It had snowed the night before so there was even some light snow on the ground as we rode through part of the mining park. I was SUPER proud of us and pleased to have ACTUALLY gotten out and done something physical. 
Returning to the van, we found that when one mountain bikes on somewhat wet and muddy paths…one can get, um….muddy? Joshy’s bike is in serious need of a bath, as are our bikes as well. When Joshy got off his bike at the van, he exclaimed “My bike is TRASHED! That’s awesome! It’s because I’m such a fast rider, huh?” Very cool and very dirty.I caned the evening as we walked through several of the Nevada City shops before leaving the area around 5 or 6PM. Just the day before, I needed the cane for mobility without added pain, so, though this physical roller coaster is obnoxious on it’s nicest of days, I need to set my goals and pursue them in spite of my pain and limitations.
Yesterday was a clear victory and example of that. Our family day out concluded with dinner at the Roseville Chili’s, thanks to a Christmas blessing from some very good friends of mine, Greg and Sue.School begins tomorrow for the kids and for, subsequently, so no more leisurely mornings. Gone, big time. Missy now gets up at 5:00AM to get ready for school, right about the time CC is leaving to go to work.
More phone calls and emails for tomorrow as I try to figure out where to go from where we are now, medically and strategically.
Don’t forget to check out the prayer blog at http://prayersandintercessions.blogspot.com/ and you are welcome to email me any requests you may have and I’ll post them on the site indefinitely, more or less, until we have an answer to prayer or until you ask them to be removed or something like that. I’m a sincere believer in prayer but I’m the last in line when it comes to being consistent in it, at least at this point in my life. I’m striving to change that, not not striving as hard as I could, I’m sure. A little conviction with my writing…hhmmmm.
Maybe more later or maybe just tomorrow.
Blessings. Peace-
Friday, January 05, 2007
Friday First...
Friday, January 5, 2007
Here is the address for the Prayer and Intercession Blog I wanted to create:
http://prayersandintercessions.blogspot.com/
What I'd like is to ask you to do is send any prayer requests to me at v12.pilot@comcast.net and include "Prayer Request" in the Subject Line. You can also send them to me via the comment feature on the blog site as well, but keep in mind that any comments left on the site will be visible to those reading the blog.
This is no big deal thing, but I hope it can be a blessing to those who wish to use it and to those mentioned within it.
Those who are comfortable using their name are encouraged to do so for the ease of those praying and interceding. If there is any concern of embarrassment or some kind of repercussion from a friend or family, then code the request as you choose. I hope you decide to take advantage of this and that it can become a tool in our spiritual tool box, so to speak.
I plan to use the new blog in addition to this blog for our prayer requests.
It only takes a couple minutes to shoot off an email if you're interested...
peace-
-w
Here is the address for the Prayer and Intercession Blog I wanted to create:
http://prayersandintercessions.blogspot.com/
What I'd like is to ask you to do is send any prayer requests to me at v12.pilot@comcast.net and include "Prayer Request" in the Subject Line. You can also send them to me via the comment feature on the blog site as well, but keep in mind that any comments left on the site will be visible to those reading the blog.
This is no big deal thing, but I hope it can be a blessing to those who wish to use it and to those mentioned within it.
Those who are comfortable using their name are encouraged to do so for the ease of those praying and interceding. If there is any concern of embarrassment or some kind of repercussion from a friend or family, then code the request as you choose. I hope you decide to take advantage of this and that it can become a tool in our spiritual tool box, so to speak.
I plan to use the new blog in addition to this blog for our prayer requests.
It only takes a couple minutes to shoot off an email if you're interested...
peace-
-w
Thursday, January 04, 2007
Thursday's Conclusions
Thursday, January 04, 2007
I forgot to add into yesterday’s blog entry that I had emailed my primary Doc, my 2 neurologists and my nephrologist regarding our current status of “nothing” at this moment. I did get replies from each of them, though they were not in any helpful accord. Let’s see…
...More or less, my emails contained the following:
I saw the second opinion Dr. who ultimately did not agree with the diagnosis, yet has NO particular idea as to what I might be dealing with. A “I don’t know what you are dealing with at all, but I am not convinced it is HKPP.” Kind of situation
He asserted that HKPP is usually mis-diagnosed which I find very strange. How such a rare condition would be a common mis-diagnosis.
I feel we have gone backwards in my care and treatment.
Without a confirming second opinion I cannot be referred to the clinical trial at UCSFQuestion; Has the secondary neurologist been contacted regarding my future care and treatment?Lastly, I feel that the genetic testing that I underwent has been used against the possible confirmation of my diagnosis. (I was tested for one of the three “known” strains of HKPP mutations but my mutation was not identified)From my own research, I have learned that the genetic testing I had done checks for three calcium channel mutations, (R528H, R1239H and R1239G) while 14 mutations (in calcium, sodium and potassium channels) have been identified so far. Please reply at your earliest.
~~~~~~~~~~~~~~~~
The following are not specifically quotes from the email exchanges but are include collections from the main focuses in the emails as well as some direct communications.
The following was taken from the reply from my Primary Neurologist:
The second opinion Dr. let me know that he did not think HKPP was the diagnosis and that Hyperaldosteronism may be the cause of the symptoms. He has more experience in neuromuscular disease and handles Kaiser’s difficult cases.
At this stage I have to agree that Hyperaldosteronism is a possible diagnosis.
It is also the only treatable diagnosis.
I suggest that you discuss with the Nephrologist and go ahead with testing for it once and for all. HKPP is a rare diagnosis with no treatment that is proven to help no matter whom you see and what trial you participate.
The following was taken from the reply from my Secondary Neurologist:
The study at UCSF hasn't been formally approved yet. If approved, it will be for comparing the typically used drug Diamox compared to a new medication in patients with Hypokalemic periodic paralysis. If you wind up diagnosed with Hypokalemic Periodic Paralysis, then you might be a candidate for the study or for just taking Diamox without the study. I spoke with your Nephrologist and the data favors the Hyperaldosteronism. You are being referred to the genetics department about possible genetic causes of Hyperaldosteronism.
And finally the following was taken from the reply from my Nephrologist:
Hope you had a Merry Christmas and a Happy New Year.The second opinion Dr. suggested the possibility of investigating hereditary forms of Hyperaldosteronism (the hormone disorder I suspect you have), however, it is very unlikely you have these, as you have responded so well to the Spironolactone. As for HKPP, what further testing could be done? I don’t know. This is not my area of specialty. I would have to refer you to the neurologists/geneticists. I know there are several more mutations identified, but clinical testing may not be available for them.
Your questions aside, how are you doing?
Have you been able to work at all?
How is your blood pressure?
~~~~~~~~~~~~~~~~~~~~~~
After all the email activity, I feel like I’m back at the beginning again with my primary Neurologist questioning his gut and researched diagnosis due to the similarities between Hyperaldosteronism and HKPP and the unfamiliarity of Kaiser’s Neurology Department with actual HKPP cases. I now understand clearly the frustrations of most of the folks on the HKPP list who are also battling, it seems, their own care givers who need some kind of “exact proof” in order to declare a lasting diagnosis.
Do I have Hyperaldosteronism? Yes, I believe I do as does a medical specialist in the field of Nephrology due to my positive reaction to a medication specifically for that condition.
Do I have HKPP? I believe so; due to my medical history, my unanswered questions of strange paralytic attacks throughout my youth and twenties and due to my positive reaction to the ingesting of potassium after this year’s attacks. Is it incredibly unlikely to have both conditions? Yes.
Is it impossible? No.
Are there any other reasonable answers as to my muscle deteriority? To my ongoing fatigue? To my daily muscle pains and spasms? Without the consideration of HKPP, no there aren’t any.
Lastly, note that the Nephrologist was the only one of the three to actually ask how I am and how I’m doing. We like him the most, even though he’s the most skeptical one of the bunch. He’s been skeptical from the beginning but his skepticism has not interfered in ANY way with his care and concern for me and that has not gone unnoticed. Both CC and I have shared our appreciation of his care with him, to his natural discomfort.
Yesterday, I put together a list of topics and titles for a Media Technologies resource that I’m looking into forming and creating. Tonight it came more into view than ever before and I’m quite intrigued to investigate it more and more. I’ll share more on that front once I have more of a handle on it. I was up until 2 AM working on it and I’m feeling the wear and tear from that decision, even now; it’s 11:14 PM.
Stress levels have been pretty high today with fragile emotions on all sides, actually. No one wins. No one. In fact, it pretty much is a “Everyone loses” kind of reality, actually. Short tempers, unrealized expectations, feeling overwhelmed, scared for paying the mortgage, for paying our “normal bills”. The clock continues to click with more pleading and begging laying before me again. Anxiousness is a given.
Those who pray, please do for our “well being” due this month in a variety of forms.
Please also be praying for my very good friend and spiritual mentor in many respects, Karl, who lives in Orange County and suffers from horrible kidney stones and chronic pain. He is also facing a vocation change and needs God’s provision on all fronts. He’s an amazing and Godly man and I’m blessed to call him friend.
Hhmmmm...Just a thought…perhaps a Prayer Blog could be constructed on this site and those who pray could check in with that blog as well and I would include people’s requests and when possible, His answers to those prayers as well. His answers could be in a different color font…? Shoot me an email if you are in favor of this idea and we can go from there. The requests would be anonymous or identified as you would choose, with only me knowing one from another as the one inputting the prayer requests. Let me know what you think.
peace-
I forgot to add into yesterday’s blog entry that I had emailed my primary Doc, my 2 neurologists and my nephrologist regarding our current status of “nothing” at this moment. I did get replies from each of them, though they were not in any helpful accord. Let’s see…
...More or less, my emails contained the following:
I saw the second opinion Dr. who ultimately did not agree with the diagnosis, yet has NO particular idea as to what I might be dealing with. A “I don’t know what you are dealing with at all, but I am not convinced it is HKPP.” Kind of situation
He asserted that HKPP is usually mis-diagnosed which I find very strange. How such a rare condition would be a common mis-diagnosis.
I feel we have gone backwards in my care and treatment.
Without a confirming second opinion I cannot be referred to the clinical trial at UCSFQuestion; Has the secondary neurologist been contacted regarding my future care and treatment?Lastly, I feel that the genetic testing that I underwent has been used against the possible confirmation of my diagnosis. (I was tested for one of the three “known” strains of HKPP mutations but my mutation was not identified)From my own research, I have learned that the genetic testing I had done checks for three calcium channel mutations, (R528H, R1239H and R1239G) while 14 mutations (in calcium, sodium and potassium channels) have been identified so far. Please reply at your earliest.
~~~~~~~~~~~~~~~~
The following are not specifically quotes from the email exchanges but are include collections from the main focuses in the emails as well as some direct communications.
The following was taken from the reply from my Primary Neurologist:
The second opinion Dr. let me know that he did not think HKPP was the diagnosis and that Hyperaldosteronism may be the cause of the symptoms. He has more experience in neuromuscular disease and handles Kaiser’s difficult cases.
At this stage I have to agree that Hyperaldosteronism is a possible diagnosis.
It is also the only treatable diagnosis.
I suggest that you discuss with the Nephrologist and go ahead with testing for it once and for all. HKPP is a rare diagnosis with no treatment that is proven to help no matter whom you see and what trial you participate.
The following was taken from the reply from my Secondary Neurologist:
The study at UCSF hasn't been formally approved yet. If approved, it will be for comparing the typically used drug Diamox compared to a new medication in patients with Hypokalemic periodic paralysis. If you wind up diagnosed with Hypokalemic Periodic Paralysis, then you might be a candidate for the study or for just taking Diamox without the study. I spoke with your Nephrologist and the data favors the Hyperaldosteronism. You are being referred to the genetics department about possible genetic causes of Hyperaldosteronism.
And finally the following was taken from the reply from my Nephrologist:
Hope you had a Merry Christmas and a Happy New Year.The second opinion Dr. suggested the possibility of investigating hereditary forms of Hyperaldosteronism (the hormone disorder I suspect you have), however, it is very unlikely you have these, as you have responded so well to the Spironolactone. As for HKPP, what further testing could be done? I don’t know. This is not my area of specialty. I would have to refer you to the neurologists/geneticists. I know there are several more mutations identified, but clinical testing may not be available for them.
Your questions aside, how are you doing?
Have you been able to work at all?
How is your blood pressure?
~~~~~~~~~~~~~~~~~~~~~~
After all the email activity, I feel like I’m back at the beginning again with my primary Neurologist questioning his gut and researched diagnosis due to the similarities between Hyperaldosteronism and HKPP and the unfamiliarity of Kaiser’s Neurology Department with actual HKPP cases. I now understand clearly the frustrations of most of the folks on the HKPP list who are also battling, it seems, their own care givers who need some kind of “exact proof” in order to declare a lasting diagnosis.
Do I have Hyperaldosteronism? Yes, I believe I do as does a medical specialist in the field of Nephrology due to my positive reaction to a medication specifically for that condition.
Do I have HKPP? I believe so; due to my medical history, my unanswered questions of strange paralytic attacks throughout my youth and twenties and due to my positive reaction to the ingesting of potassium after this year’s attacks. Is it incredibly unlikely to have both conditions? Yes.
Is it impossible? No.
Are there any other reasonable answers as to my muscle deteriority? To my ongoing fatigue? To my daily muscle pains and spasms? Without the consideration of HKPP, no there aren’t any.
Lastly, note that the Nephrologist was the only one of the three to actually ask how I am and how I’m doing. We like him the most, even though he’s the most skeptical one of the bunch. He’s been skeptical from the beginning but his skepticism has not interfered in ANY way with his care and concern for me and that has not gone unnoticed. Both CC and I have shared our appreciation of his care with him, to his natural discomfort.
Yesterday, I put together a list of topics and titles for a Media Technologies resource that I’m looking into forming and creating. Tonight it came more into view than ever before and I’m quite intrigued to investigate it more and more. I’ll share more on that front once I have more of a handle on it. I was up until 2 AM working on it and I’m feeling the wear and tear from that decision, even now; it’s 11:14 PM.
Stress levels have been pretty high today with fragile emotions on all sides, actually. No one wins. No one. In fact, it pretty much is a “Everyone loses” kind of reality, actually. Short tempers, unrealized expectations, feeling overwhelmed, scared for paying the mortgage, for paying our “normal bills”. The clock continues to click with more pleading and begging laying before me again. Anxiousness is a given.
Those who pray, please do for our “well being” due this month in a variety of forms.
Please also be praying for my very good friend and spiritual mentor in many respects, Karl, who lives in Orange County and suffers from horrible kidney stones and chronic pain. He is also facing a vocation change and needs God’s provision on all fronts. He’s an amazing and Godly man and I’m blessed to call him friend.
Hhmmmm...Just a thought…perhaps a Prayer Blog could be constructed on this site and those who pray could check in with that blog as well and I would include people’s requests and when possible, His answers to those prayers as well. His answers could be in a different color font…? Shoot me an email if you are in favor of this idea and we can go from there. The requests would be anonymous or identified as you would choose, with only me knowing one from another as the one inputting the prayer requests. Let me know what you think.
peace-
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