Sorry I've been gone a while. Been a bit depressed lately, as my surgeon disagrees with Dr. Bouncy on just about everything, including his assessment that the tumor is shrinking. I can't decide which doctor is right - the darned thing seems to change daily, shrinking and growing like a puffer fish. Since treatment is in some part decided by this issue, it's a bit scary... unfortunately there is little we can do to accurately scan this monster for size, so we won't know for sure until we take it out - and then we won't really know, because we never got an accurate idea of exactly where it was from biopsy to extraction.
Frustrating.
Also my sister had to have an endometrial/uterine biopsy last week, and it will be a while before we get the results on that. So we are generally holding our breath a lot around here. Perhaps we are restricting the oxygen to our brains a bit too much...
In the meantime, I am supplementing with D3 (I am VERY low in D), E, CoQ10, ground flax seeds, and trying to figure out how to get in calcium/magnesium without also getting the unpleasant intestinal issues that keep me up all night.
Does anybody know of something yummy to do with sardines that doesn't *also* have something to do with crackers or bread?
2/24/09
2/17/09
Alert
Vitamin D deficiency has a PRIMARY link to *all* cancers, including and especially hormonally-linked ones such as prostate and breast cancer. It is also linked to other serious diseases - MS, heart disease, autism, etc. Information can be found on the Vitamin D Council website, or if you want a good video to start with (takes about 30 minutes, but you get the idea within the first 10 or so):
http://www.youtube.com/watch?v=1PsyaYNX1dw
There is a huge health-care threat flying under the radar right now - see below - and our opportunity to respond is rapidly shrinking. Please take action now, if you can!
(And if you haven't been tested already, please get tested asap)
~Eileen
Vitamin D Council Newsletter
Friday the 13th, February, 2009.
Emergency!
On Friday, February 6, 2009, Medicare announced its intention to stop paying for vitamin D blood tests in many Medicare districts. If this rule passes, the change will quickly extend to all Medicare districts. Private insurers will then follow suit, denying payment for vitamin D blood tests, even for the diagnoses of vitamin D deficiency. Medicare proposes to pay for vitamin D blood tests for only few limited indications, such as rickets, osteomalacia and chronic renal failure.
Draft LCD for Vitamin D Assay Testing (DL29510)
This rule change flies in the face of an enormous amount of research, some of it published in the last few months. For example, several weeks ago, the British Journal of Cancer reported that in men with prostate cancer, those with highest vitamin D blood levels were 7 (seven) times more likely to survive than were men with the lowest levels (RR 0.16). If any media stories appeared about this amazing discovery, I am unable to locate them.
Association between serum 25(OH)D and death from prostate cancer
Apparently, Medicare's reasoning is not understood in England. A week ago, researchers at Oxford discovered the long-sort genetic link vitamin D has with multiple sclerosis. According to Medicare's new rules, if you have MS, or don't want your unborn baby to develop it, or have a family history of MS, or just don't want to get MS, you will have to pay for the blood test to decide how much vitamin D you should take to optimize your 25-hydroxy-vitamin D level.
MS link to vitamin D deficiency hailed by politicians as giant leap forward
If you are pregnant, and want to reduce your risk of caesarian section by four-fold, you will have to anti up.
Low vitamin D may increase chance of a caesarean delivery
Patients with diagnosed colon cancer are 48% less likely to die if their vitamin D levels are high. If you have this dreaded cancer, how do you know if your levels are high?
Vitamin D May Promote Colon Cancer Survival
If you fear getting demented, pay up. Recent research indicates people with impaired cognition are twice as likely to have vitamin D deficiency.
Vitamin D is mental health aid
If you have Parkinson's disease, or don't want to get it, get our your wallet.
Study finds link between low vitamin D and Parkinson's disease
Even the American Academy of Pediatrics recently stated,
"Given the growing evidence that adequate maternal vitamin D status is essential during pregnancy, not only for maternal well-being but also for fetal development, health care professionals who provide obstetric care should consider assessing maternal vitamin D status by measuring the 25-hydroxy-vitamin D concentrations of pregnant women."
Prevention of rickets and vitamin D deficiency in infants, children, and adolescents.
That is, the American Academy of Pediatrics now suggests vitamin D blood levels be measured in all pregnant women. Expectant mothers, concerned about their baby's "fetal development," will soon have to pay for the only test that will do what the American Academy of Pediatrics now advises, tell them if their unborn baby is vitamin D deficient.
I could go on and on. Now is the time the Vitamin D Council needs your help. I want you to do two things:
1) Email the person taking comments, Medicare's Ms. Gina Oliveri, at Gina.Oliveri@ugswlp.com, and tell her your feelings about this proposed rule change. Include your reason why this test is crucial for the health of Americans.
2) Send an email to your Congressperson and ask them to investigate Medicare's "Draft LCD for Vitamin D Assay Testing (DL29510)." Tell your representative not to let this happen. Simply click on the link below, fill in your state and zip code, go to your Congressperson's website, and then click on "contact."
Write Your Representative
Of course, this rule change will help the finances of the Vitamin D Council, as it will increase sales of ZRT's in-home Vitamin D test, which generates ten bucks per test to us. However, this rule change will end up killing Americans. We cannot let it happen.
I can't stress enough how important this is for the public health of the United States. On February 21st, in just nine days, Medicare will not allow any further input by citizens, so email both Gina.Oliveri@ugswlp.com and your Congressperson right now.
John Cannell, MD
The Vitamin D Council
9100 San Gregorio Road
Atascadero, CA 93422
http://www.youtube.com/watch?v=1PsyaYNX1dw
There is a huge health-care threat flying under the radar right now - see below - and our opportunity to respond is rapidly shrinking. Please take action now, if you can!
(And if you haven't been tested already, please get tested asap)
~Eileen
----------------------------------------------------------------------------------------
Vitamin D Council Newsletter
Friday the 13th, February, 2009.
Emergency!
On Friday, February 6, 2009, Medicare announced its intention to stop paying for vitamin D blood tests in many Medicare districts. If this rule passes, the change will quickly extend to all Medicare districts. Private insurers will then follow suit, denying payment for vitamin D blood tests, even for the diagnoses of vitamin D deficiency. Medicare proposes to pay for vitamin D blood tests for only few limited indications, such as rickets, osteomalacia and chronic renal failure.
Draft LCD for Vitamin D Assay Testing (DL29510)
This rule change flies in the face of an enormous amount of research, some of it published in the last few months. For example, several weeks ago, the British Journal of Cancer reported that in men with prostate cancer, those with highest vitamin D blood levels were 7 (seven) times more likely to survive than were men with the lowest levels (RR 0.16). If any media stories appeared about this amazing discovery, I am unable to locate them.
Association between serum 25(OH)D and death from prostate cancer
Apparently, Medicare's reasoning is not understood in England. A week ago, researchers at Oxford discovered the long-sort genetic link vitamin D has with multiple sclerosis. According to Medicare's new rules, if you have MS, or don't want your unborn baby to develop it, or have a family history of MS, or just don't want to get MS, you will have to pay for the blood test to decide how much vitamin D you should take to optimize your 25-hydroxy-vitamin D level.
MS link to vitamin D deficiency hailed by politicians as giant leap forward
If you are pregnant, and want to reduce your risk of caesarian section by four-fold, you will have to anti up.
Low vitamin D may increase chance of a caesarean delivery
Patients with diagnosed colon cancer are 48% less likely to die if their vitamin D levels are high. If you have this dreaded cancer, how do you know if your levels are high?
Vitamin D May Promote Colon Cancer Survival
If you fear getting demented, pay up. Recent research indicates people with impaired cognition are twice as likely to have vitamin D deficiency.
Vitamin D is mental health aid
If you have Parkinson's disease, or don't want to get it, get our your wallet.
Study finds link between low vitamin D and Parkinson's disease
Even the American Academy of Pediatrics recently stated,
"Given the growing evidence that adequate maternal vitamin D status is essential during pregnancy, not only for maternal well-being but also for fetal development, health care professionals who provide obstetric care should consider assessing maternal vitamin D status by measuring the 25-hydroxy-vitamin D concentrations of pregnant women."
Prevention of rickets and vitamin D deficiency in infants, children, and adolescents.
That is, the American Academy of Pediatrics now suggests vitamin D blood levels be measured in all pregnant women. Expectant mothers, concerned about their baby's "fetal development," will soon have to pay for the only test that will do what the American Academy of Pediatrics now advises, tell them if their unborn baby is vitamin D deficient.
I could go on and on. Now is the time the Vitamin D Council needs your help. I want you to do two things:
1) Email the person taking comments, Medicare's Ms. Gina Oliveri, at Gina.Oliveri@ugswlp.com, and tell her your feelings about this proposed rule change. Include your reason why this test is crucial for the health of Americans.
2) Send an email to your Congressperson and ask them to investigate Medicare's "Draft LCD for Vitamin D Assay Testing (DL29510)." Tell your representative not to let this happen. Simply click on the link below, fill in your state and zip code, go to your Congressperson's website, and then click on "contact."
Write Your Representative
Of course, this rule change will help the finances of the Vitamin D Council, as it will increase sales of ZRT's in-home Vitamin D test, which generates ten bucks per test to us. However, this rule change will end up killing Americans. We cannot let it happen.
I can't stress enough how important this is for the public health of the United States. On February 21st, in just nine days, Medicare will not allow any further input by citizens, so email both Gina.Oliveri@ugswlp.com and your Congressperson right now.
John Cannell, MD
The Vitamin D Council
9100 San Gregorio Road
Atascadero, CA 93422
2/13/09
On Today's Visit With Dr. Bouncy
With apologies to L. Frank Baum and his masterpiece:
I'm Melting, MELLLLLTINNNGGG....
(Happy Dance, Choirs Singing, The Peasants Rejoice)
I'm Melting, MELLLLLTINNNGGG....
(Happy Dance, Choirs Singing, The Peasants Rejoice)
2/12/09
"Pay Us For The Pain", As Played By Guy Tweedy
So now the bills are starting to pour in. It is ironic that the disease that is killing you kills your finances (and your family's finances) first.
Almost as frustrating is that the bills come in with no explanation of what each itemized amount is for... you get a date of service, but no explanation of what the service was.
So for instance, I went to see my oncologist on a particular date: we got his opinion on what should be done next (I should take truly horrific toxic drugs and see which dies first, the cancer or me - and no, he doesn't ever suggest alternatives, and yes [insert face like smelling rotten eggs here] I could get a second opinion but the next doctor will say the same thing**) and he had his lab draw blood for some tests for vitamin and mineral levels, etc. That's it.
Now I get a bill for that date of service and there's about 8 different amounts billed but no explanation of what they are for - and the billed amounts total to thousands of dollars. Thousands.
A little less than $400 was for the doctor's time with us. Wouldn't YOU like to make around $1,000 an hour for repeating the same thing over and over? Because it was pretty clear that that is what this guy does - he just says, "This is what I always prescribe for people in your situation," and that is that.
Well, okay, specialists make a lot of money - whether they are good at their job or not. They've got medical school to pay for, and specialist office drones they have to hire to push papers around to the 800 individual health insurance companies (which all have different forms and processes and negotiated discounts), and insurance premiums to pay in order to avoid being sued for treating people like they don't matter. So cough it up and stop complaining, or we'll stop perforating and irradiating and dissecting you.
But that was pretty much the smallest part of that bill, a bill which otherwise did not identify anything about the charges except that they were charging outrageous sums for... whatever it is they feel like charging for. Air pumped into the room, maybe? The $900 cotton ball they taped to my arm after taking my blood? Liquor distilled from the stamens of rare flowers grown in pristine mountain snow, hand-harvested by cloistered monks in Tibet and transported by Yeti so that the doctor can calm his nerves after having to actually talk to a patient?
Now, am I supposed to just assume that blood tests for my creatinine and glucose and hemoglobin levels are going to cost as much as $1,500 each, and just write out the check for my portion? Or is this an exercise (for which I will be billed) designed to make sure I keep my mind distracted from my unpleasant prognosis by forcing me to spend all the hours between doctors appointments in sitting with the phone glued to my ear***, listening to a) 'inoffensive' pop music as interpreted by Guy Tweedy And His Euphonium Orchestra, or b) endlessly repeated canned recordings assuring me that my insurance company values me, but they are too busy to talk to me right now, so please hold indefinitely, or c) the customer service rep, who really has no way of knowing exactly what most of this is for, she has no idea why I didn't get an itemized bill (for these or any other services I've been billed for) but she can put in an order on her computer for an itemized list to be sent to me as soon as the computers are back up, although she isn't sure when that might be.
I've got 38 bills listed by my insurance company so far, for things done in December and part of January alone, none of them itemized in either the bills from the providers or the website accounting of the insurance company's billing records (they have date of service and location, sometimes the name of a clinician, and amounts billed, but that's it). If I want to find out what the service actually was, I have to call and wait on hold for the customer service rep of each individual business office of each individual doctor or clinic or lab or hospital or technician or pharmacy... who may or may not be able to tell me what the bill was for. At one point I got a nearly $6,000 bill that both insurance company and clinic insisted was a mystery beyond their ability to explain, but they were sure that eventually it would wend its way through the system and they'd be able to tell me what it was for eventually.
I am also told that there is over $6,000 (different $6,000 from the above) still owing for bills that I didn't actually receive - so obviously I don't know what services those are for, either, and they can't tell me because I don't know the account number(s), since I never got the (unitemized) bill. There will be more bills coming in for December and January over the next few months. They won't be itemized, either. I'll have to call in on those. By then I'll be getting unitemized bills for services received in February and March. Oh, and also there are a couple unitemized bills for services done back in May and July of last year, services for which I already paid but there was an adjustment 'that (they) had to do by hand', so now I owe more on those. Thanks for checking in.
Yes, we have The Best Health Care System In The World. We know this because the politicians have been passionately and sincerely asserting this in their speeches every election cycle for at least the past five decades. Pay no attention to Big Pharma and the insurance companies behind the curtain...
I may not need to worry about the cancer. It's the raised blood pressure that's likely to get me. Or fatal ennui brought on by too many hours of Guy Tweedy And His Euphonium Orchestra.
** No, the next doctor did NOT say the same thing. The next doctor treated me like a real person with feelings and a life, which was refreshing. Of course, I haven't gotten the bills for that yet, so I don't know if that costs more.
*** This is a shortened version for dramatic effect. My mom is taking over most of the work involved with the billing issues, so soon she will be the one with the Tweedy version of "Tie a Yellow Ribbon" endlessly repeating in her head. THAT is true love, the sort only a mother can know...
Almost as frustrating is that the bills come in with no explanation of what each itemized amount is for... you get a date of service, but no explanation of what the service was.
So for instance, I went to see my oncologist on a particular date: we got his opinion on what should be done next (I should take truly horrific toxic drugs and see which dies first, the cancer or me - and no, he doesn't ever suggest alternatives, and yes [insert face like smelling rotten eggs here] I could get a second opinion but the next doctor will say the same thing**) and he had his lab draw blood for some tests for vitamin and mineral levels, etc. That's it.
Now I get a bill for that date of service and there's about 8 different amounts billed but no explanation of what they are for - and the billed amounts total to thousands of dollars. Thousands.
A little less than $400 was for the doctor's time with us. Wouldn't YOU like to make around $1,000 an hour for repeating the same thing over and over? Because it was pretty clear that that is what this guy does - he just says, "This is what I always prescribe for people in your situation," and that is that.
Well, okay, specialists make a lot of money - whether they are good at their job or not. They've got medical school to pay for, and specialist office drones they have to hire to push papers around to the 800 individual health insurance companies (which all have different forms and processes and negotiated discounts), and insurance premiums to pay in order to avoid being sued for treating people like they don't matter. So cough it up and stop complaining, or we'll stop perforating and irradiating and dissecting you.
But that was pretty much the smallest part of that bill, a bill which otherwise did not identify anything about the charges except that they were charging outrageous sums for... whatever it is they feel like charging for. Air pumped into the room, maybe? The $900 cotton ball they taped to my arm after taking my blood? Liquor distilled from the stamens of rare flowers grown in pristine mountain snow, hand-harvested by cloistered monks in Tibet and transported by Yeti so that the doctor can calm his nerves after having to actually talk to a patient?
Now, am I supposed to just assume that blood tests for my creatinine and glucose and hemoglobin levels are going to cost as much as $1,500 each, and just write out the check for my portion? Or is this an exercise (for which I will be billed) designed to make sure I keep my mind distracted from my unpleasant prognosis by forcing me to spend all the hours between doctors appointments in sitting with the phone glued to my ear***, listening to a) 'inoffensive' pop music as interpreted by Guy Tweedy And His Euphonium Orchestra, or b) endlessly repeated canned recordings assuring me that my insurance company values me, but they are too busy to talk to me right now, so please hold indefinitely, or c) the customer service rep, who really has no way of knowing exactly what most of this is for, she has no idea why I didn't get an itemized bill (for these or any other services I've been billed for) but she can put in an order on her computer for an itemized list to be sent to me as soon as the computers are back up, although she isn't sure when that might be.
I've got 38 bills listed by my insurance company so far, for things done in December and part of January alone, none of them itemized in either the bills from the providers or the website accounting of the insurance company's billing records (they have date of service and location, sometimes the name of a clinician, and amounts billed, but that's it). If I want to find out what the service actually was, I have to call and wait on hold for the customer service rep of each individual business office of each individual doctor or clinic or lab or hospital or technician or pharmacy... who may or may not be able to tell me what the bill was for. At one point I got a nearly $6,000 bill that both insurance company and clinic insisted was a mystery beyond their ability to explain, but they were sure that eventually it would wend its way through the system and they'd be able to tell me what it was for eventually.
I am also told that there is over $6,000 (different $6,000 from the above) still owing for bills that I didn't actually receive - so obviously I don't know what services those are for, either, and they can't tell me because I don't know the account number(s), since I never got the (unitemized) bill. There will be more bills coming in for December and January over the next few months. They won't be itemized, either. I'll have to call in on those. By then I'll be getting unitemized bills for services received in February and March. Oh, and also there are a couple unitemized bills for services done back in May and July of last year, services for which I already paid but there was an adjustment 'that (they) had to do by hand', so now I owe more on those. Thanks for checking in.
Yes, we have The Best Health Care System In The World. We know this because the politicians have been passionately and sincerely asserting this in their speeches every election cycle for at least the past five decades. Pay no attention to Big Pharma and the insurance companies behind the curtain...
I may not need to worry about the cancer. It's the raised blood pressure that's likely to get me. Or fatal ennui brought on by too many hours of Guy Tweedy And His Euphonium Orchestra.
** No, the next doctor did NOT say the same thing. The next doctor treated me like a real person with feelings and a life, which was refreshing. Of course, I haven't gotten the bills for that yet, so I don't know if that costs more.
*** This is a shortened version for dramatic effect. My mom is taking over most of the work involved with the billing issues, so soon she will be the one with the Tweedy version of "Tie a Yellow Ribbon" endlessly repeating in her head. THAT is true love, the sort only a mother can know...
2/9/09
Patient and Patience
Being a Patient is hard work. And it's not a skill that I excel at, by any means.
Well, I kind of suck at it, actually.
Patience is something that I do not have by nature. I want to do everything NOW, while I still remember what it is I want to do. I want to do it NOW, before I get distracted. I want to do it NOW, while the opportunity is ripe. I want to do it NOW, before it gets snatched away. I want to do it NOW, while I still can.
So this whole healing thing is not a good fit for me. Being waited on hand and foot is sort of amusing, for about ten minutes - and then it gets frustrating to wait for someone else to do it. It gets tempting to nag at people about HOW to do it... and eventually the compulsion is too much for my limited self-control, and I just have to do it myself.
Ow.
Dammit.
Are there lessons for this sort of thing? Or am I just doomed to sit at the back of the class?
Well, I kind of suck at it, actually.
Patience is something that I do not have by nature. I want to do everything NOW, while I still remember what it is I want to do. I want to do it NOW, before I get distracted. I want to do it NOW, while the opportunity is ripe. I want to do it NOW, before it gets snatched away. I want to do it NOW, while I still can.
So this whole healing thing is not a good fit for me. Being waited on hand and foot is sort of amusing, for about ten minutes - and then it gets frustrating to wait for someone else to do it. It gets tempting to nag at people about HOW to do it... and eventually the compulsion is too much for my limited self-control, and I just have to do it myself.
Ow.
Dammit.
Are there lessons for this sort of thing? Or am I just doomed to sit at the back of the class?
2/5/09
I've Been Down How Long?
It's amazing how out of shape you can get in a few short weeks. I went out today with mom - just out to lunch and a few turns around two grocery stores - and by the end my heart was all kerflubbity. Just from getting in and out of the car and walking around a little bit!
I'd get out walking more, but the sidewalks around here are a maze of ice rinks just waiting to send you to the orthopedist's. Forget it, I've got enough to worry about, thanks. But I definitely need to get going on the driving thing soon, or I won't be able to manage the thing at all... not because of the incisions, but because I won't be able to handle the aerobic exercise involved in going from peddle to peddle (and yes, I DO drive a manual transmission - don't you?)
I'd get out walking more, but the sidewalks around here are a maze of ice rinks just waiting to send you to the orthopedist's. Forget it, I've got enough to worry about, thanks. But I definitely need to get going on the driving thing soon, or I won't be able to manage the thing at all... not because of the incisions, but because I won't be able to handle the aerobic exercise involved in going from peddle to peddle (and yes, I DO drive a manual transmission - don't you?)
2/4/09
Home
Greetings, all! I'm home from the wars... well, I've brought the battle home, at any rate.
Many, many thanks to all the wonderful folks who sent messages, flowers, gifts, etc. I cannot express how much it meant to me to have you there, cheering me on, and how instrumental it was in my relatively rapid recovery. If I get through this stage of things without major problems, I owe it all to you and your encouragement and kindness.
I've had a few minor setbacks since coming home, one being an infection of the incision (it's amazing how low a little infection can bring you), and I think I may have slightly torn an inner incision last night - which may put a dent in my ambition to get driving again by the end of the week. I'm not a patient person, and the Cabin Fever is definitely getting to me. That said, things have otherwise been going pretty well, and I can't complain.
(Well, I can complain, of course, because I'm good at it, but I can't legitimately complain)
Onward and upward!!
Many, many thanks to all the wonderful folks who sent messages, flowers, gifts, etc. I cannot express how much it meant to me to have you there, cheering me on, and how instrumental it was in my relatively rapid recovery. If I get through this stage of things without major problems, I owe it all to you and your encouragement and kindness.
I've had a few minor setbacks since coming home, one being an infection of the incision (it's amazing how low a little infection can bring you), and I think I may have slightly torn an inner incision last night - which may put a dent in my ambition to get driving again by the end of the week. I'm not a patient person, and the Cabin Fever is definitely getting to me. That said, things have otherwise been going pretty well, and I can't complain.
(Well, I can complain, of course, because I'm good at it, but I can't legitimately complain)
Onward and upward!!
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