Tuesday, June 15, 2010

Some Early Thoughts on Anatomy of an Epidemic

Robert Whitaker's latest book "Anatomy of an Epidemic" came out last month. I had been listening to it on tape (Audible) since I have problems reading print at the moment. Yesterday, the blessed package came from Amazon. His new book, and the reissue of "Mad in America". 

I made myself a sandwich, poured a glass of ice tea from the fridge, and sat down, to read it again. And from the minute I started, I realized one thing. The publisher made a huge mistake. The book should come with Kleenex. 

Like the spoken edition- which is  the same book - it's the type of non fiction book that will make you cry. Weep, copiously. And after your tear ducts are dry, I felt like I was watching one of my all time favorite movies- "Network", living the "Mad as hell" scene. I would have indeed gone to the window and shouted, but my downstairs neighbor is 88 and deaf, and ... what good is shouting "I'm mad as hell" if no one can hear you? 

I'm too numb right now, and it's 5 am in the morning to sit down and write a review worthy of the New York Times Book Review. Let's just say this. 

In the book he interviews many, many people, especially in the last page. I am fortunate thanks to Facebook, to have emailed  some of them and they inspire me.  

And I think about the ones in the book as true cases, especially the children, who were also hurt and maimed. Including the one I love the most- ME. In the fact that we were not killed outright but, as a friend said in a phone call, - "our brains were raped".

I don't know who is pro-Big Pharma or against it, and frankly it isn't salient here. What I want everyone who sees this is to arm themselves with knowledge, every time they get a script from the doctor. The doctor can be your GP, Gynecologist, Dentist, or Shrink. You get a script, ask what this is. What are the side effects. Please ask. Go home and look up the drug on the Internet. Knowledge is important. Don't be a sheeple. This can save your life. 

 I was brought up by a father who worked for Big Pharma, and believed in Whitaker's "Magic Bullets". You take the script from the doctor, and take it. No questions asked. Doctors are just a fraction below G-d. If you don't question , you really are taking Blue and Red Pills. Within ten miles from where I grew up, and about 3 miles from where I am now, is a town called "Milltown". My mother always beamed with pride as she reminded her girls in the back seat of the car this town we were driving through was named after a wonderful drug from the 50s. (Whitaker describes the town and the drug in detail in the book as well). 

I had only one doctor who, upon giving me a script for Lamictal back in 2001, told me about the rash. If I get any kind of rash, call him immediately. If I cannot reach him, go to the emergency room. No other doctor, from childhood on, ever did this. 

The first drug I ever had a problem with was Prozac, which I started in 87, about 12 months after I was diagnosed. Prozac was was the wonder drug of that age- on the cover of Newsweek and The New York Magazine at the same time.  The side effects were awful.  I couldn't sleep, I had nightmares. Then the fevers, ringing in my ears, and the sensation my skin was moulting and I couldn't stop scratching. My whole personality changed, I went from being a mild Casper Milquetoast type person to someone looking for a girl fight. Then I was told to quit the drug cold turkey, and fortunately, for me, I was put on both Zoloft, and later, Paxil, and fortunately, no side effects. Not like the Prozac. 

It wasn't until I was reading this book I saw i was not alone with side effects from Prozac that I experienced. And when I told the doctor how I was feeling on it, he told me to keep staying on it, and ride it out. Two psychiatrists later, I was finally moved off Prozac to something else. 

And now I sit, 2 years ago almost dying from Haldol, where every muscle in my body fell asleep and I had to re-learn how to do everything. Walk, talk,eat, even go to the bathroom. Yet in the book, over and over again- Haldol- muscle fatigue. I was as bad a case from this as possible, the worst would have been dying. I survived. I wouldn't wish this on my worst enemy. To this day I am haunted by something a nurse told me when my muscles started to wake, that my screams from the pain were exactly like the ones from burn victims. 

Three years ago, one P-doc put me on Remeron. After about two weeks on that I got so suicidal I checked myself into the hospital, because I reckoned, I would rather be shot up with Thorazine and be alive and get off this drug then stay home and I know I would suicide. While I was detoxing off Remeron, the same pdoc wanted to put me into Trenton Psychiatric Hospital due to the side effects I was experiencing with the meds. I fired him, and left the hospital against doctors orders. Alive. If I was put in Trenton Psych, I fear I would still be there, like a scene from "Cuckoo's nest" 

And being on lithium, since 87- with small respites on Depakote and Lamictal- well, I just wrote about loosing my hair. I am constantly sick to my stomach, and can only eat bland food. Anything spicy- no. Nexium has become a magic pill for me to be able to eat anything.  But the worst- is knowing that sometime between now and September I have to go for another bone marrow biopsy, and it's just a matter of time before I have leukemia unless by some miracle my white blood count should stop duplicating and go DOWN. Which it hasn't since 2003, it's been going up in some kind of Mathusian equation I haven't been able to crack.

I said this book belongs on every one's bookshelf. It does.This book deserves to be on the Times Top Ten list. But no matter your stance- pro pharma, anti pharma know this.  But please, question the doctor for everything. Don't be blind trust, there are good ones and bad ones out there- but you are the most important person in the world, and you must know every option out there, and question. Likewise, there are good drugs out there- Penicillin, for example has saved lives. But question. Question everything. Question authority like you haven't done since you are 18-19.  The life you save will be your own, your husbands, child's or parents. You owe them and yourself the chance to live long and prosper. 

ETA: After I posted this, Pharma Gossip put this book review on it's site as the book of the month. It's an article also worth reading. 

8 comments:

Red Pill Junkie said...

"I don't know who is pro-Big Pharma or against it, and frankly it isn't salient here. What I want everyone who sees this is to arm themselves with knowledge, every time they get a script from the doctor. The doctor can be your GP, Gynecologist, Dentist, or Shrink. You get a script, ask what this is. What are the side effects. Please ask. Go home and look up the drug on the Internet. Knowledge is important. Don't be a sheeple. This can save your life."

I'm an iconoclast by nature, so I'm always questioning authority.

Problem is, there's a lot of garbage and bogus information right now, it's increasingly difficult to filter out the useful data from the junk.

Any advice you might give to people who want to arm themselves with GOOD information?

susan said...

RPJ- the only thing I can think of is when someone buys a new car- they usually spend hours figuring out what they want. They read the consumer magazines, check the Kelly Blue Book and take car for a test drive.

We as consumers need to behave like this for anything and all products we use. We do this for the things we have like TV's, furniture, clothing and food. But people don't do this so much for health care- check out the hospitals check out the doc if you need surgery. Ask around. If you don't like the doc, find another one. Get the second opinion.

I don't know the answers. But it seems to me, and I hope I am wrong, that people, a lot of people, spend more time deciding what car to buy, then checking out a doctor and then asking what this medication they are getting a script for will or won't do.

As for good information, I am proud of my blog list and there are some really good blogs on it that talk about this very subject. Or go to Crazy Meds.

Anyone else?

Anonymous said...

Thank you for the book review. I will check it out.

It always amazes me when people have no idea the names of the pills they take. With a nursing background I always arm myself with reliable info.

I don't care how many letters are behind someones name...I know my body best and I am willing to fight if necessary to get the best care.

Give Holly a scratch under the chin from me.

Laura (USA)

susan said...

Thank you Laura. It's hard knowing all your meds, so many of them even sound alike but do other things. I have to write them all down now in my Filofax.

Holly just got her scritch. ;-)

Andrew said...

Experience has taught me to do as you suggest here. Find out what these meds do and do not do.

Marcie said...

I guess a lot of it has to do with what kind of relationship you have with your doctor. Fortunately, I have a pretty good one. He'll hear me out if I have issues with a drug. He tries to explain to me what he's trying to do chemically.

The biggest side effect has been to my bank account. If I have to lay down $100 for a prescription (my co-pay) I expect miracles.

Kristin said...

When my daughter was in the throws of her worst psychotic episodes, she would take anything to quiet down her mind. I sat helpless by her side and watched haldol and seroquel and cogentin take effect. The time I am thinking about, it took a very long time - as if her body were trying very hard to fight it all off. Her arm kept flinging out, unattached to any reason. Finally, the meds took over and she slumped in the passenger seat next to me. She turned her face and I read complete surrender.
It was maybe the saddest thing I have ever witnessed.
Reading Anatomy of an Epidemic made me so mad that I want to scream. I KNEW there was a better way. But, in the moment, those terribly frightening minutes of complete and utter fear, I understand wanting an out with an easily swallowed pill.
I only wish that the system were different and that my daughter had been treated without meds from the get-go - with talk therapy, a slow, methodical approach, but one with lasting benefits that far outweigh the pill-popping-quick-fixes.
It is amazing how squashed the publication of this book has been. No national press other that Time Mag did a review. Big Pharma has their thumbs on all the little fires popping up.
But, let's start something!
Your review was great.
xx kris

newt said...

Hello...I am a pink capsule junkie, and certainly agree that being "schooled" about drugs and there side effects is extremely important, and I went through many before finally finding a cocktail that keeps me out of the pit of hell, but I still get a little high every once in a while. Lipitor almost killed me, I was bedridden and suicidal for 2 months, because i thought that my Fibro had spiralled out of control, meanwhile it was a common side effect of Lipitor that noone (except my Psychiatrist) decided to tell me that! My son is also on meds, and battling with Psychiatrists for him is equally exhausting. Somehow it's easier to fighht for him than it is for myself. Love your blog...going to link it. Thanks

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