Sunday, July 26, 2009

Book Synopsis: Heartsearch: Toward Healing Lupus

I stumbled on this book via
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...

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:

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.

Thursday, July 2, 2009

healthy (and not) sunscreens

Folks with lupus are warned to avoid the sun.
Sometimes we can't completely avoid it, so we use sunscreen. But some sunscreens are filled with nasty chemicals that are really bad for us. Here's a great resource for finding a healthy sunscreen: