Here is an e mail from a friend of mine, who is British and has been fighting myeloma for the last year or so. He wanted to et the record straight about government health care in England. (FYI I don't have a direct line of communication to Sarah Palin.)
Dear Carla
You're American - tell that lunatic Sarah Palin to stop peddling lies about our National Health Service! It appears from over here that some rather ugly people are coming out of the woodwork to try and persuade you all that the British NHS is some kind of communist conspiracy that, if adopted in the US will result in bodies lying in the street (I thought that was what happened after Hurricane Katrina thanks to neglected flood defences...) and doctors arbitrarily deciding who lives and dies.
Sure, the NHS isn't perfect, far from it is some respects due to our idiot government's obsession with targets being met to produce good-looking statistics, hence a top-heavy administration full of box-tickers and not enough actual workers like cleaners in some areas. I can't say though that I have anything to complain about after my experiences. While I was cooped up during most of February in the (spotlessly clean) isolation room, I asked one of the nurses what the difference was between the way I was being accomodated and treated and the private patients on another floor. She said they got a compliemntary newspaper and a better view out of the window.
What did you tell me about how much your various drugs had cost you in the last year? I think you mentioned the figure of $7000. Here in April they made cancer drugs free - previously I had been supplied with all my stuff using a card costing about $150 for a year, irrespective of the quantities. Prior to that I had to pay about $12 for each prescription, sometimes three or four a time, so the high use card became the better option, but as I say now no charge at all.
I wonder if Ms Palin gets paid by the drug and insurance companies in cash or with stock options and Mercedes sports cars.
There, I feel better now, having a little rant about these BS merchants!
Hope things are good with you. Best wishes
Martin
Thursday, August 20, 2009
Monday, August 3, 2009
Book Synopsis: Lupus Novice: Toward Self-Healing
Okay, just got done reading another lupus memoir:
Lupus Novice: Toward Self-Healing
by Laura Chester
original copyright 1987; 3rd edition 1999
How strange that I spent my first 17 years dealing with lupus having no idea that there was even *one* lupus memoir out there, and now in the course of a few weeks, i've read 2. And both books were out there in the world the entire time. Well, there was no internet when I first started my search for answers. And now, thanks to amazon.com, it's very easy to find a book (or 2 - or 3 - or 10) on just about anything now.
This author's lupus first showed up as discoid (skin) and progressed to involved joints and fatigue. She was married and had children at the time of onset. Her writing is very descriptive, poetic at times. Sometimes I'm a little uncomfortable with the level of personal detail- I feel like I'm reading someone's diary!- but I suppose that's how a memoir is supposed to be written. She is a writer by profession, both before and after the publication of this book. I actually prefer to read memoirs by people who are not professional writers, because it feels more like a conversation and less like a work of art. But maybe I'm just a lazy reader.
Writing style preference aside, this book is intriguing and important. Like the first memoir I read, Heartsearch, this author also searches the depths of her soul for any emotional poisons that may be at the least, inhibiting her healing, or at worst, actually causing her illness.
Like me, Laura resisted prednisone for months, trying various other medications and natural remedies first, until she was worn down into submission.
Laura uses some things I'm familiar with, such as juicing, detoxification, massage, coffee enemas, homeopathy, faith healing, yoga, bach flower remedies, prayer, affirmation, writing, talk therapy (and of course prednisone and placquenil; and stress and sun avoidance), but also some things I've never heard of, despite the fact that they've been around for decades: Certain teas, Eurythmy and anthroposophic healing.
Well it took me 17 years to find her book, so clearly I'm not at the hub of "breaking alternative medicine for lupus news."
Interesting note: both this author and the author of Heartsearch used and benefitted greatly from anthroposophic healing. I'm intrigued!
The anthroposophic approach, pioneered by the late Austrian, Rudolph Steiner, is about soul struggle, and resolving that. Well, who couldn't use that, even if they don't have lupus? It seems to be really hard work, but well worth it, and it seems that if you can lift the burden of inner conflict from yourself, it's much easier to heal physically. Maybe there is some truth to the claim of my friend Rosemarie, who says "All illness starts on an energetic level. By the time it manifests physically, it's a metaphor."
Or maybe a physical illness is just a physical illness and easing yourself of the stress of negative emotions allows you to heal. Maybe the answer lies somewhere in the middle. We do know you can't really separate mind and body. They are intertwined. When you do something good for the body, you feel better emotionally and vice versa.
Back to the memoir: While the author admits that her case of lupus was not as severe as many, she does state in this, the 3rd edition that she has been relatively free of lupus symptoms (except for skin eruptions from overexposure to the sun) and off the meds for 20 years. This is very good news and reason for all of us to hope for and work for a life off the meds and free from the big bad wolf.
I've veered from my stated mission, "Lupus and humor"- If you're looking for humor, read the oldest posts.
I'm just presently on a search for more and deeper answers.
Coming soon: my thoughts on:
Healing Lupus: Steps in a Personal Journey by Waverly Evans
This one is a workbook, so it may take me a while to have any useful comments to offer. But it is important to note that the author also encourages deep emotional work and claims "I do not have lupus anymore." Now that's the kinda news I'm looking to hear.
Lupus Novice: Toward Self-Healing
by Laura Chester
original copyright 1987; 3rd edition 1999
How strange that I spent my first 17 years dealing with lupus having no idea that there was even *one* lupus memoir out there, and now in the course of a few weeks, i've read 2. And both books were out there in the world the entire time. Well, there was no internet when I first started my search for answers. And now, thanks to amazon.com, it's very easy to find a book (or 2 - or 3 - or 10) on just about anything now.
This author's lupus first showed up as discoid (skin) and progressed to involved joints and fatigue. She was married and had children at the time of onset. Her writing is very descriptive, poetic at times. Sometimes I'm a little uncomfortable with the level of personal detail- I feel like I'm reading someone's diary!- but I suppose that's how a memoir is supposed to be written. She is a writer by profession, both before and after the publication of this book. I actually prefer to read memoirs by people who are not professional writers, because it feels more like a conversation and less like a work of art. But maybe I'm just a lazy reader.
Writing style preference aside, this book is intriguing and important. Like the first memoir I read, Heartsearch, this author also searches the depths of her soul for any emotional poisons that may be at the least, inhibiting her healing, or at worst, actually causing her illness.
Like me, Laura resisted prednisone for months, trying various other medications and natural remedies first, until she was worn down into submission.
Laura uses some things I'm familiar with, such as juicing, detoxification, massage, coffee enemas, homeopathy, faith healing, yoga, bach flower remedies, prayer, affirmation, writing, talk therapy (and of course prednisone and placquenil; and stress and sun avoidance), but also some things I've never heard of, despite the fact that they've been around for decades: Certain teas, Eurythmy and anthroposophic healing.
Well it took me 17 years to find her book, so clearly I'm not at the hub of "breaking alternative medicine for lupus news."
Interesting note: both this author and the author of Heartsearch used and benefitted greatly from anthroposophic healing. I'm intrigued!
The anthroposophic approach, pioneered by the late Austrian, Rudolph Steiner, is about soul struggle, and resolving that. Well, who couldn't use that, even if they don't have lupus? It seems to be really hard work, but well worth it, and it seems that if you can lift the burden of inner conflict from yourself, it's much easier to heal physically. Maybe there is some truth to the claim of my friend Rosemarie, who says "All illness starts on an energetic level. By the time it manifests physically, it's a metaphor."
Or maybe a physical illness is just a physical illness and easing yourself of the stress of negative emotions allows you to heal. Maybe the answer lies somewhere in the middle. We do know you can't really separate mind and body. They are intertwined. When you do something good for the body, you feel better emotionally and vice versa.
Back to the memoir: While the author admits that her case of lupus was not as severe as many, she does state in this, the 3rd edition that she has been relatively free of lupus symptoms (except for skin eruptions from overexposure to the sun) and off the meds for 20 years. This is very good news and reason for all of us to hope for and work for a life off the meds and free from the big bad wolf.
I've veered from my stated mission, "Lupus and humor"- If you're looking for humor, read the oldest posts.
I'm just presently on a search for more and deeper answers.
Coming soon: my thoughts on:
Healing Lupus: Steps in a Personal Journey by Waverly Evans
This one is a workbook, so it may take me a while to have any useful comments to offer. But it is important to note that the author also encourages deep emotional work and claims "I do not have lupus anymore." Now that's the kinda news I'm looking to hear.
Sunday, July 26, 2009
Book Synopsis: Heartsearch: Toward Healing Lupus
I stumbled on this book via Amazon.com
Heartsearch: Toward Healing Lupus by Donna Hamil Talman
When I saw the description of the book, I knew I needed to read it, because it tackled a question I've been wondering about ever since my diagnosis: is there a connection between emotions and lupus? Is there a personality profile for a lupus patient (similar to the profile of heart attack victims being type-A overachievers)? Was lupus a metaphor for some specific unresolved emotional conflict?
Since the author is both a lupus patient and a psychotherapist, I was intrigued about what she might have to say, to say the least.
I was sick for 2 years, then diagnosed in 1993. I didn't have internet- was there even a public internet in 2003?- so I spent a lot of time in the library, writing letters, and on the phone. I read a lot of books on body-mind connection, and although this book is copyright 1991, I never found it 'til now. In fact, I think it's out of print, because I had to buy a used copy.
The book has a lot of personal detail in it, almost like reading a diary. The first chapter describes an orgasm in detail. I don't think I would have the courage to write and publish anything so personal. And I imagine some folks are going to be a little shocked by it- but therapists, I'm sure, are accustomed to talking about such things openly.
The author was married and had a young child at the time of falling ill. I can only imagine how much more difficult it must be to go through this with a young active child, though she does a pretty good job describing it. Being married when first getting sick., which I was not, seems to have its own upand downsides, as there is someone there to help, but on the other hand, they must feel like this was not what they signed up for when they got married to a healthy person! All in all, it's a vivid description of what it's like to go through working, being married, raising a child, and dealing with doctors when sick with a confusing illness. If you don't have any idea what it's like before reading the book, you will by the end.
Now, the subject of lupus as metaphor, what intrigued me most into buying the book. What seems to be a common thread among lupus patients, from what I've read in this book, Bernie Seigel's Love Medicine and Miracles, and what I am now reading in Lupus Novice is this: trouble with authority and unmet needs; blocked feelings, long, sadness; and a need for nurturing because of lack of early nurturing (of course a devastating illness is also going to cause a need for nurturing, and dealing with our ridiculous health care system is going to cause problems with authority. But I digress..) If there is a profile, we tend to be rebellious and angry.
The profile for someone with RA was listed, and RA is also chronic and autoimmune; shy, self-conscious, inhibited; martyrs, perfectionists; nervous, moody, tense; unable to express anger; convinced their mothers had rejected them and their fathers were very strict. and the weirdest one: fond of sports. Of course, RA is not lupus, but it's an interesting starting point.
Regardless of finding the exact profile for lupus, which the author eventually decides is less important than pursuing health (I agree- and yet, I still wish someone would find the profile of a lupus patient!) and dealing with unresolved emotions, which is only going to lead to better health for anyone, the author seems to have found a better level of health (though not without a daily "maintenance dose" of the dreaded prednisone) through natural diet, meditation, allowing her self regular self-case such as weekly massages, cutting back on work, taking caution in the sun, writing, and, yes, having released pent-up emotion.
As the author is an academic, sometimes the writing is a little lofty and graphic, but the questions she asks are profound and interesting (I'm so glad to hear someone else voice the same questions!), and she is well-read, which I appreciate. Her journey gives us all some starting points for our own. And I wonder what she's up to now. I googled her named and got a photographer. Think she's moved on to a new profession?
I've got a bunch more books I'm reading and old ones I'm re-reading. I will continue to post synopses of them here.
Heartsearch: Toward Healing Lupus by Donna Hamil Talman
When I saw the description of the book, I knew I needed to read it, because it tackled a question I've been wondering about ever since my diagnosis: is there a connection between emotions and lupus? Is there a personality profile for a lupus patient (similar to the profile of heart attack victims being type-A overachievers)? Was lupus a metaphor for some specific unresolved emotional conflict?
Since the author is both a lupus patient and a psychotherapist, I was intrigued about what she might have to say, to say the least.
I was sick for 2 years, then diagnosed in 1993. I didn't have internet- was there even a public internet in 2003?- so I spent a lot of time in the library, writing letters, and on the phone. I read a lot of books on body-mind connection, and although this book is copyright 1991, I never found it 'til now. In fact, I think it's out of print, because I had to buy a used copy.
The book has a lot of personal detail in it, almost like reading a diary. The first chapter describes an orgasm in detail. I don't think I would have the courage to write and publish anything so personal. And I imagine some folks are going to be a little shocked by it- but therapists, I'm sure, are accustomed to talking about such things openly.
The author was married and had a young child at the time of falling ill. I can only imagine how much more difficult it must be to go through this with a young active child, though she does a pretty good job describing it. Being married when first getting sick., which I was not, seems to have its own upand downsides, as there is someone there to help, but on the other hand, they must feel like this was not what they signed up for when they got married to a healthy person! All in all, it's a vivid description of what it's like to go through working, being married, raising a child, and dealing with doctors when sick with a confusing illness. If you don't have any idea what it's like before reading the book, you will by the end.
Now, the subject of lupus as metaphor, what intrigued me most into buying the book. What seems to be a common thread among lupus patients, from what I've read in this book, Bernie Seigel's Love Medicine and Miracles, and what I am now reading in Lupus Novice is this: trouble with authority and unmet needs; blocked feelings, long, sadness; and a need for nurturing because of lack of early nurturing (of course a devastating illness is also going to cause a need for nurturing, and dealing with our ridiculous health care system is going to cause problems with authority. But I digress..) If there is a profile, we tend to be rebellious and angry.
The profile for someone with RA was listed, and RA is also chronic and autoimmune; shy, self-conscious, inhibited; martyrs, perfectionists; nervous, moody, tense; unable to express anger; convinced their mothers had rejected them and their fathers were very strict. and the weirdest one: fond of sports. Of course, RA is not lupus, but it's an interesting starting point.
Regardless of finding the exact profile for lupus, which the author eventually decides is less important than pursuing health (I agree- and yet, I still wish someone would find the profile of a lupus patient!) and dealing with unresolved emotions, which is only going to lead to better health for anyone, the author seems to have found a better level of health (though not without a daily "maintenance dose" of the dreaded prednisone) through natural diet, meditation, allowing her self regular self-case such as weekly massages, cutting back on work, taking caution in the sun, writing, and, yes, having released pent-up emotion.
As the author is an academic, sometimes the writing is a little lofty and graphic, but the questions she asks are profound and interesting (I'm so glad to hear someone else voice the same questions!), and she is well-read, which I appreciate. Her journey gives us all some starting points for our own. And I wonder what she's up to now. I googled her named and got a photographer. Think she's moved on to a new profession?
I've got a bunch more books I'm reading and old ones I'm re-reading. I will continue to post synopses of them here.
Saturday, July 18, 2009
illness and emotions: michael jackson and deepak chopra
Maybe some of you saw on the news when Deepak Chopra was claiming that Michael Jackson's lupus was caused by childhood physical abuse. I have to say this statement was reckless and extremely not helpful to the cause of getting the public to take this illness seriously.
On the other hand, I do believe there is *some* emotional component to all disease. Our emotions are affected by our physical well-being and vice versa. And maybe some or even all illnesses are expressions of something hidden, deep and troubling. But it isn't fair to set lupus apart as a disease that is caused by emotional issues while other diseases such as cancer and MS are taken seriously and treated with compassion. Isn't it bad enough to suffer with a painful chronic illness without people throwing unfounded theories about emotional causes at us? Where's the compassion that so many other illnesses are treated with? What if lupus really is just caused by toxic overload from enviromental pollutants and vaccines? I seriously doubt that everyone with lupus was abused as a child. There are 1.5 million of us, and my parents were not perfect but they did not beat me. My troubles started shortly after a bad experience getting my wisdom teeth extracted, and subsequent allergic reaction to the drugs they gave me. Maybe we should blame dentists for all cases of lupus. Sigh.
Anyway, angry as I am about Chopra's statement- here we are, finally in the news spotlight and *this* is what is said!!!- I do entertain the idea that there are underlying *contributing factors* to disease. Louise Hay says the emotional contributors to all disease are anger and fear. Well, that at least gives me something I can work on. Everyone can benefit from letting go of anger and fear, both of which are toxic.
I had a friend who was very angry over the death of a friend of his, and he blamed the doctor. It was all he thought about, every day. He died a year later at 36 of a tumor wrapped around his heart. Symbolic, yes. A fine example of emotions manifesting physically. But we all had enough class not to sit there and say it to his face while he was suffering.
We can't single out lupus and say it's entirely caused by emotions and all the other diseases are "real" diseases caused by "real" things like germs and genes and viruses. I'm tired of being the redheaded stepchild of illness. It's real, Mr Chopra. Yes, there are emotional factors, just as there are with every single disease ever diagnosed. Anger and fear are bad for everyone. So is telling them their problem isn't real. Now I've got more anger to go deal with...
On the other hand, I do believe there is *some* emotional component to all disease. Our emotions are affected by our physical well-being and vice versa. And maybe some or even all illnesses are expressions of something hidden, deep and troubling. But it isn't fair to set lupus apart as a disease that is caused by emotional issues while other diseases such as cancer and MS are taken seriously and treated with compassion. Isn't it bad enough to suffer with a painful chronic illness without people throwing unfounded theories about emotional causes at us? Where's the compassion that so many other illnesses are treated with? What if lupus really is just caused by toxic overload from enviromental pollutants and vaccines? I seriously doubt that everyone with lupus was abused as a child. There are 1.5 million of us, and my parents were not perfect but they did not beat me. My troubles started shortly after a bad experience getting my wisdom teeth extracted, and subsequent allergic reaction to the drugs they gave me. Maybe we should blame dentists for all cases of lupus. Sigh.
Anyway, angry as I am about Chopra's statement- here we are, finally in the news spotlight and *this* is what is said!!!- I do entertain the idea that there are underlying *contributing factors* to disease. Louise Hay says the emotional contributors to all disease are anger and fear. Well, that at least gives me something I can work on. Everyone can benefit from letting go of anger and fear, both of which are toxic.
I had a friend who was very angry over the death of a friend of his, and he blamed the doctor. It was all he thought about, every day. He died a year later at 36 of a tumor wrapped around his heart. Symbolic, yes. A fine example of emotions manifesting physically. But we all had enough class not to sit there and say it to his face while he was suffering.
We can't single out lupus and say it's entirely caused by emotions and all the other diseases are "real" diseases caused by "real" things like germs and genes and viruses. I'm tired of being the redheaded stepchild of illness. It's real, Mr Chopra. Yes, there are emotional factors, just as there are with every single disease ever diagnosed. Anger and fear are bad for everyone. So is telling them their problem isn't real. Now I've got more anger to go deal with...
Wednesday, July 15, 2009
finding a good doctor
One of my friends just asked me how you find a good doctor.
First, i'd suggest checking out a DO (osteopath). they have all the training of an MD but they don't go through the "hazing" of internship, so they're still human. they also are more open to alternative medicine and self-care, not just ramming pills down your throat and sending you for a million tests.
Many M.D.s started out kind, curious and idealistic. then the system squashed and dehumanized them (ever see the movie patch adams?) so that, as in every cycle of abuse, they pass it on- to us, the patients, the vulnerable powerless group. the only cure is love, to love them even tho they are wrong.
Sometimes i feel singled out. even tho i know they treat everyone that rudely, somehow that doesn't make me feel any better knowing.
If you are stuck with the doc you have you can always try to make him/ her more human. Suggestions from bernie seigel and patch adams (both doctors) about how to get better care form your doc include hugging your doctor, looking at them compassionately, bringing them cookies or some other token of friendship, or act as you would if you were trying to get someone to like you.
it's ridiculous, but we as patients have to give the lvoe first if we want ot get it. being a dr right now really sucks
the pressure they are under and the BS they have ot deal with sucks the joy right out of their calling. it's no excuse for being rude or abusive, but it does help to remember that when dealing with someone who is only marginally offensive
you may find you like a cash-only doctor. Find one at one of these websites:
http://www.simplecare.com/
http://www.pricedoc.com/
ultimately, the best thing is word of mouth- ask around to people who live near you for someone who is still human.
First, i'd suggest checking out a DO (osteopath). they have all the training of an MD but they don't go through the "hazing" of internship, so they're still human. they also are more open to alternative medicine and self-care, not just ramming pills down your throat and sending you for a million tests.
Many M.D.s started out kind, curious and idealistic. then the system squashed and dehumanized them (ever see the movie patch adams?) so that, as in every cycle of abuse, they pass it on- to us, the patients, the vulnerable powerless group. the only cure is love, to love them even tho they are wrong.
Sometimes i feel singled out. even tho i know they treat everyone that rudely, somehow that doesn't make me feel any better knowing.
If you are stuck with the doc you have you can always try to make him/ her more human. Suggestions from bernie seigel and patch adams (both doctors) about how to get better care form your doc include hugging your doctor, looking at them compassionately, bringing them cookies or some other token of friendship, or act as you would if you were trying to get someone to like you.
it's ridiculous, but we as patients have to give the lvoe first if we want ot get it. being a dr right now really sucks
the pressure they are under and the BS they have ot deal with sucks the joy right out of their calling. it's no excuse for being rude or abusive, but it does help to remember that when dealing with someone who is only marginally offensive
you may find you like a cash-only doctor. Find one at one of these websites:
http://www.simplecare.com/
http://www.pricedoc.com/
ultimately, the best thing is word of mouth- ask around to people who live near you for someone who is still human.
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