I've had insomnia for as along as I can remember. If I didn't need to sleep to heal, I just say "who cares" and stay up all night watching Law and Order reruns, or tackle that mountain of paper in my office that needs filing. Or clean out my sock drawer. Well, that would probably wake up my husband. But I'd just get out of bed and do something productive with the lost sleep time. But I need to sleep to heal, or at least to keep from sliding downhill into a hospital bed.
But once I put that pressure on myself to that *must* sleep, now I have performance anxiety added to the mix- what if i can't sleep? Oh god, there's the paper delivery guy. Oh now I hear the trash trucks. it's getting light outside. crap.
I've been on bunches of sleep meds. Ambien just made my face puffy, still couldn't sleep. Rozaren has great commercials with Abe LIncoln and beavers, but my dreams were still missing me, even with a double dose. Attivan actually works for me, but it erases my memory and makes me tired (how can you tell - lupus makes you tired! OK, even more tired).
A great deal of the reason I can't sleep is that I can't shut off my brain. i worry about stupid crap that probably won't happen, or stupid stuff that already happened and I should have handled better, or stupid stuff that will happen but doesn't matter, or I can't do anything about... or, best of all, i worry about not getting enough sleep, causing me to not be able to fall asleep. Anti-anxiety meds work great for this, but for every drug there is a price to pay, and i don't just mean $, because attivan generic is cheap. Having no short-term memory is actually getting to be a problem. Thankfully, my husband is very trustworthy. Because when people tell me I said on Monday "I'd like to go to a 5-hour play about ringworms this weekend," i just have to take their word for it that I did indeed say that. CLearly it's time to get off the attivan. it's been 3 years.
I started taking it in the hospital when I was almost literally climbing the walls because 1) i hate being in the hospital 2) they pout me on a high dose of prednisone. I was about to check out A.M.A (funny how "American Medical Association" and "Against medical advice" have the same acronym) and they gave me some attivan to calm me down. Meanwhile I already had plans to sneak out that night for dinner with my fiance and my mom so get some real food. I took the attivan first. I remember getting the menu, and I remember signing the hospital log on the way back in as a "visitor" (I signed in as my sister coming to visit myself). The rest I have to take my fiance's word on.
Anyway, it's time to deal with this monster. So i bought this guided imagery cassette (yes a cassette) and listened to it on my walkman (yes a walkman) and listened to it with my pet rock (no, not really) as i lay in bed, and after 4 straight nights of lousy/ no sleep, I finally relaxed and fell asleep. I often use CNN when I can't sleep, but the content on CNN can't possibly be what I really want in my subconscious: political fighting, rape, murder, balloon boy. I need something more healing (which would be just about anything else short of Nightmare on Elm Street).
The cassette was so good I went looking to see if it had been re-released on CD, and it has, so I repurchased it. (Just like the good old days when I bought an album on LP, then cassette, then CD... then mp3). It's called "Health Journeys: A Guided Meditation to Help You with Rheumatoid Arthritis or Lupus" by
Belleruth Naparstek
The meditations are specifically for someone with RA or lupus. it's so nice not to be borrowing something from cancer and trying to adapt it. It is specifically for us, and right on target, and I've used it 2 nights in a row. Not only am I actually falling asleep, it's to something not just non-toxic, but actually healing.
Thursday, November 5, 2009
Monday, November 2, 2009
Low Dose Naltrexone
OK, so this is the next great hope for autoimmune disease, and I gotta say after 17 years of dealing with the horrible effects of lupus and the equally horrible effects of the drugs used to treat lupus, I am ready for something else, especially if it is cheap, non-toxic, and doesn't suppress your immune system!
I had 3 people tell me about LDN (low-dose naltrexone) in the course of a month, so I knew the universe was trying to tell me something! I printed out the info on the website and brought it to my rheumatologist this past Friday. he's supposed to call me Monday after he has a chance to research it and let me know whether he's be willing to prescribe it for me. If he doesn't call em Monday I will call him Tuesday. And id he doesn't prescribe it for me, I will be looking for another doctor.
My inflammation (sed rate) hasn't been below 55 all year, and living with that kind of inflammation is really dangerous. I managed to turn things around back in February and my tests even went negative briefly. But then i was exposed to mold and went into fibromyalgia attacks, then i got a neuroma in my foot form wearing tight shoes, and got rid of that and caught a virus. I'm tired of being so vulnerable!
So here's hoping. I'm hearing great things about this drug, which was developed in high doses to treat addiction. I'm not a fan of drugs in general, but with lupus, we just don't seem to be able to get by or get better without some kind of pharmaceutical assistance, at least during crisis. LDN is not an immune suppressant, nor an immune booster, but an immune modulator- it gets your body to make more endorphins (and who with lupus couldn't use some feel-good substances!) and to stop attacking itself. Really sounds like the right approach.
Right now, as we sit here and stare at our computer screens, there are clinical trials going on in Europe using LDN to treat autoimmune diseases including lupus (SLE). There will probably not be any such trials in the US because the medicine is no longer under patent and therefore not profitable. But it is legal and ethical for doctors to prescribe it, if you can convince them to do so. It's called "off-label use."
To get more in-depth info on LDN, check out the LDN webpage. There are discussion groups you can join.
http://www.lowdosenaltrexone.org/
I had 3 people tell me about LDN (low-dose naltrexone) in the course of a month, so I knew the universe was trying to tell me something! I printed out the info on the website and brought it to my rheumatologist this past Friday. he's supposed to call me Monday after he has a chance to research it and let me know whether he's be willing to prescribe it for me. If he doesn't call em Monday I will call him Tuesday. And id he doesn't prescribe it for me, I will be looking for another doctor.
My inflammation (sed rate) hasn't been below 55 all year, and living with that kind of inflammation is really dangerous. I managed to turn things around back in February and my tests even went negative briefly. But then i was exposed to mold and went into fibromyalgia attacks, then i got a neuroma in my foot form wearing tight shoes, and got rid of that and caught a virus. I'm tired of being so vulnerable!
So here's hoping. I'm hearing great things about this drug, which was developed in high doses to treat addiction. I'm not a fan of drugs in general, but with lupus, we just don't seem to be able to get by or get better without some kind of pharmaceutical assistance, at least during crisis. LDN is not an immune suppressant, nor an immune booster, but an immune modulator- it gets your body to make more endorphins (and who with lupus couldn't use some feel-good substances!) and to stop attacking itself. Really sounds like the right approach.
Right now, as we sit here and stare at our computer screens, there are clinical trials going on in Europe using LDN to treat autoimmune diseases including lupus (SLE). There will probably not be any such trials in the US because the medicine is no longer under patent and therefore not profitable. But it is legal and ethical for doctors to prescribe it, if you can convince them to do so. It's called "off-label use."
To get more in-depth info on LDN, check out the LDN webpage. There are discussion groups you can join.
http://www.lowdosenaltrexone.org/
Wednesday, September 23, 2009
Smoothies- good for you?
In an attempt to get more fruit into my diet, I've been making lots of smoothies at home. I know what goes into them when I make them: fruit, ice, and a little rice milk. That's it.
Well, America, do not assume that is what goes into a smoothie at the mall. All smoothies are not created equal. Your mileage will most definitely vary. I was on a long trip, searching daily for something to eat that wasn't bad for me. The Luna bars in my suitcase were the healthiest things I had for 10 days. I went to many places looking for smoothies and nearly all of them were made of 8 ounces of sugar water, some ice, and a few berries. That is not health food. It is one step above Kool-Aid.
I have, however, found 2 chains that serve real honest-to-God smoothies: no added sugar, no corn syrup, just fruit and ice, maybe yogurt if you want it.
They are:
Jamba Juice
Smoothie King
If you're not sure what's in it, ask. Is there anything in it besides fruit and ice? Do you put water in it? If they hold up a gallon jug that looks like tea, that's the 8 ounces of sugar water that has no nutritional value whatsoever. Save yourself $7 and have a candy bar. It's about as (un)healthy. Or look around for a Jamba Juice or Smoothie King.
I am not connected to or paid by either company. Just sharing what I'm learning, in my effort to find good food.
Well, America, do not assume that is what goes into a smoothie at the mall. All smoothies are not created equal. Your mileage will most definitely vary. I was on a long trip, searching daily for something to eat that wasn't bad for me. The Luna bars in my suitcase were the healthiest things I had for 10 days. I went to many places looking for smoothies and nearly all of them were made of 8 ounces of sugar water, some ice, and a few berries. That is not health food. It is one step above Kool-Aid.
I have, however, found 2 chains that serve real honest-to-God smoothies: no added sugar, no corn syrup, just fruit and ice, maybe yogurt if you want it.
They are:
Jamba Juice
Smoothie King
If you're not sure what's in it, ask. Is there anything in it besides fruit and ice? Do you put water in it? If they hold up a gallon jug that looks like tea, that's the 8 ounces of sugar water that has no nutritional value whatsoever. Save yourself $7 and have a candy bar. It's about as (un)healthy. Or look around for a Jamba Juice or Smoothie King.
I am not connected to or paid by either company. Just sharing what I'm learning, in my effort to find good food.
Tuesday, August 25, 2009
Book Synopsis: The Last Lecture
I'm a little behind the curve on reading the latest best-sellers. But then that means I can get them at the library or really cheap used. So, I finally got around to reading The Last Lecture by (the late) Randy Pausch.
If you're like my husband, and unable to read or talk about death, then this book will not be enjoyable for you. But if you're like me, and you've already faced your own mortality, the mentions of death, mortality and illness won't bother you. That's not really what the book is about- it's about living life fully. But to understand why he is giving the lecture, you have to know the circumstances of his life. He had been diagnosed with pancreatic cancer, one of the scariest cancers with the highest mortality rates. He was given months to live. According to his blog, he seems to have lived 2 years after diagnosis, thanks in part to a radical surgery shortly after diagnosis. Randy and his wife had 3 young kids, and he had a career he loved, so he had every reason to live, and this lecture was his attempt to bottle up everything he wanted to tell their kids once they were old enough to understand it. We just get to listen in. The lecture was given live at the university where he worked; they actually had a legacy of "last Lectures," where, strangely enough, professors were asked to give a lecture addressing "What wisdom would we impart to the world if we knew it was our last chance." And the author was asked to speak in the series.
The book is not a transcript of the lecture. It was written afterward, as Randy went on long bike rides and his co-author transcribed the conversation. It's something of a memoir, but Randy tries to squeeze in as many life lessons as possible throughout. The most tangible, practical advice is contained in his time management section. When you haven't got much time to live, you haven't got any to waste, so here's a guy who knows the value of time management. FYI, it is not really about conquering or living with illness.
I found it an easy, uplifting read with some good advice on conducting your life.
Right now I am reading Eat to Live. I actually had lunch at the same table as Dr Fuhrman and his wife yesterday. They live what they preach and are very passionate about nutrition and healing. More on that soon. My progress on that book may be slowed a bit by my intermittent reading of David Leee Roth's autobiography (gotta balance out that Last lecture seriousness somehow, right?)
If you're like my husband, and unable to read or talk about death, then this book will not be enjoyable for you. But if you're like me, and you've already faced your own mortality, the mentions of death, mortality and illness won't bother you. That's not really what the book is about- it's about living life fully. But to understand why he is giving the lecture, you have to know the circumstances of his life. He had been diagnosed with pancreatic cancer, one of the scariest cancers with the highest mortality rates. He was given months to live. According to his blog, he seems to have lived 2 years after diagnosis, thanks in part to a radical surgery shortly after diagnosis. Randy and his wife had 3 young kids, and he had a career he loved, so he had every reason to live, and this lecture was his attempt to bottle up everything he wanted to tell their kids once they were old enough to understand it. We just get to listen in. The lecture was given live at the university where he worked; they actually had a legacy of "last Lectures," where, strangely enough, professors were asked to give a lecture addressing "What wisdom would we impart to the world if we knew it was our last chance." And the author was asked to speak in the series.
The book is not a transcript of the lecture. It was written afterward, as Randy went on long bike rides and his co-author transcribed the conversation. It's something of a memoir, but Randy tries to squeeze in as many life lessons as possible throughout. The most tangible, practical advice is contained in his time management section. When you haven't got much time to live, you haven't got any to waste, so here's a guy who knows the value of time management. FYI, it is not really about conquering or living with illness.
I found it an easy, uplifting read with some good advice on conducting your life.
Right now I am reading Eat to Live. I actually had lunch at the same table as Dr Fuhrman and his wife yesterday. They live what they preach and are very passionate about nutrition and healing. More on that soon. My progress on that book may be slowed a bit by my intermittent reading of David Leee Roth's autobiography (gotta balance out that Last lecture seriousness somehow, right?)
Thursday, August 20, 2009
What British health care is really like
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
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
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.
Thursday, July 9, 2009
Did Michael jackson have lupus?
If michael jackson had lupus, he would have to hide it in order to be able to keep working. that's how show biz works. you can't get anyone to insure your tour if you might end up sick and cancel because of a rpe-existing condition. so if i were him and wanted to keep open the option of working, i would hide the fact that i had lupus. also, lupus is so misunderstood that i imagine he did not want to have to be the poster child for it and have ot educate everyone on this misunderstood disease. he had enough crap swirling around him as it was.
lupus would explain everything- the umbrellas shielding him from the sun, the autoimmune skin disease, the need for pain killers and other drugs. And the cardiac arrest. Most people who die from lupus die of cardiac arrest.
some say that anna nicole smith had lupus, and that she hid it because she didn't want to be remembered that way.
very few celebs come out and admit to a chronic illness. lots of them come out and talk about cancer, because cancer has had a great public campaign of awareness and no stigma attached to it anymore. also, it's something that happens, then you get better. the chronic illness... is chronic.
lupus would explain everything- the umbrellas shielding him from the sun, the autoimmune skin disease, the need for pain killers and other drugs. And the cardiac arrest. Most people who die from lupus die of cardiac arrest.
some say that anna nicole smith had lupus, and that she hid it because she didn't want to be remembered that way.
very few celebs come out and admit to a chronic illness. lots of them come out and talk about cancer, because cancer has had a great public campaign of awareness and no stigma attached to it anymore. also, it's something that happens, then you get better. the chronic illness... is chronic.
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