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I AM MAD AS HELL

June 23rd, 2010

I got mad at my therapist yesterday. I hadn’t seen him since I read Robert Whitaker’s Anatomy of an Epidemic and watched my world slipped off its axis.

My therapist has read my book. He knows how my daughter and I were lead so deeply into the mental healthcare industry by the well-informed doctors running world-renown hospitals and clinics throughout this country. He kept nodding. Yes. Yes, he knows that there is no scientific evidence that brain chemistry is the root of all mental illness. He knows that the chemistry in the brain is changed by the medications. He knows the efficacy of psychiatric drugs is often short-lived and that too many cause side effects that require more and more medications. He knows that the pharmaceutical industry has promoted the use of their products to unsuspecting vulnerable people like my daughter creating chronically dependent users. Very solemnly he agreed that it is a travesty what has happened to the mentally ill in this country.

Why didn’t he say something to me? Why hadn’t ANYONE said something to me before I found this out on my own?

My therapist equivocated saying that many people do find relief in a quick-acting pill. The alternative – psychoanalysis – is a long, drawn-out process, requiring patience and the support of family and friends. Few people would chose that route given an alternative that might make them feel good in a matter of weeks – however temporary that may be.

But, I asked, how about someone like my daughter who never really found relief from meds and was treated to hundreds of different combinations of antidepressants and antipsychotics, truckloads of neuroleptics and yet she continued to struggle and got worse along the way?

From Anatomy of an Epidemic -

As a society, we put our trust in the medical profession to develop the best possible clinical care for diseases and ailments of all types. We expect that the profession will be honest with us as it goes about this task. And yet, as we look for ways to stem the epidemic of disabling mental illness that has erupted in this country, we cannot trust psychiatry, as a profession, to fulfill that responsibility.

For the past twenty-five years, the psychiatric establishment has told us a false story. It told us that schizophrenia, depression, and bipolar illness are known to be brain diseases, even though … it can’t direct us to any scientific studies that document this claim. It told us that psychiatric medications fix chemical imbalances in the brain, even though decades of research failed to find this to be so. It told us that Prozac and the other second-generation psychotropics were much better and safer than the first-generation drugs, even though the clinical studies had shown no such link. Most important of all, the psychiatric establishment failed  to tell us that the drugs worsen long-term outcomes. …

We need to become informed about the long-term outcomes …. and then we need to ask the National Institute of Mental Health, National Alliance on Mental Illness and the American Psychiatric Association, and all those who prescribe the medications to address the many questions raised (by Robert Whitaker’s research). In other words, we need to have an honest scientific discussion. We need to talk about what is truly known about the biology of mental disorders, about what the drugs actually do, and about how the drugs increase the risk that people will become chronically ill. If we could have that discussion, then change surely would follow. Our society would embrace and promote alternative forms of non-drug care. Physicians would prescribe the medications in a much more limited, cautious manner… In short, our societal delusions about “psychopharmacology” revolution could at last fade away, and good science could illuminate the path to a much better future.

From my book Collateral Damage -

I reviewed our bills from Austen Riggs and pulled out the statements from the pharmacy. This is the premier facility in the country for the treatment-resistant patient and they have been drugging the life out L. Pharmaceuticals may be the current protocol for treatment, the studied, well-documented and well-received modern approach, but they didn’t work for  L. My guess is that one hundred years from now the sedation techniques and useless attempts to corral L’s untamed mind with locked doors and rules will be viewed to have been as barbaric and innocuous as attaching a leach to cure a fever. Psychiatry seems to have lost its way. Poorly verified diagnoses and ineffectual medications, coupled with talk therapy that did not promote coping strategies, help with sorting out her reasoning skills or hone her ability to manage relationships had all failed L.

For a couple of months, it looked like they were tapering off the drug regime, clearing her system, but suddenly, there was a startling increase in medications being administered. More importantly, L’s anxiety continued through every drug recommended. Didn’t anybody notice?

I knew something was wrong, I just didn’t know about the fraud that was being perpetrated on my daughter and millions in our country just like her.

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Revised Model

June 22nd, 2010

I am spent. Days of discovery has me shaky and waiting for the next blow. Each nugget of plain-speaking honesty that has been hidden from me by  Big Pharma, hits like a hail storm.

I have kicked all my preconceived notions of mental healthcare and treatment to the gutter.

It was washed away by the flood of information from: Dr. Carlat, Robert Whitaker, Furious Season, Stephany’s amazing compiling of information on her blog, Soulful Sepulcher. The list of what I have been reading goes on and on and I will update my blogroll, organizations and articles listed on my blog site to reflect it in the coming days.

I was caught unaware. I  blindly accepted and stupidly followed the masses. I stuck with the medical model long after my daughter announced that it wasn’t working and that she was, in fact, getting sicker.

How could I be so duped by a system? Me the “questioner”, the feisty one who never let anyone get away with anything.

“Sometimes things seem worse before they improve.” We did notice that my daughter seemed to be getting worse with each subsequent treatment center stay. Every new doctor approached my daughter with another drug regime to try. “You have to give it time.” And, I believed in the doctors and endless treatment teams.

Why did I keep believing in them?

I am afraid that it was just a simple desperate need to make things right. I wanted to relieve my daughter of the demons that were destroying her life. I wanted a quick fix and permanent results. I remember driving cross country to yet another treatment center imploring my daughter to give it a try, begging her to do the work, take the drugs, toe the line and maybe, just maybe, she would feel better.

She turned to me one day, devoid of emotion, and stated as an irrefutable fact:

They have tried everything. You know this mom. Let’s just stop.”

No. No. NO! There HAS to be a treatment that will work! I was so sure of myself. Do it, PLEASE, for me.

I wanted my daughter back.

Selfish me, I should have listened to her.

Instead, I am spending my days looking up benzodiazepine withdrawal by slow tapering, reading articles by Eric Milgram, Ph.D., Pharmalot,  and Pharma Gossip trying to find a way to fix the damage done to my daughter by the pharmaceutical industry and my ignorance.

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You Are Beautiful Blogger Award

June 19th, 2010


A Beautiful Blogger is someone who blogs with truth, honesty and integrity. They blog from their heart, sharing their story, humor, and life with others. They go out of their way to support others, giving of themselves to provide encouragement and brighten someone’s day. They glow with a beauty that comes from within, and it shows in what they write and how they interact with others.

Kris from Our Journey Through Life gave me this award. I am honored. It is sometimes so difficult to write but I feel that now that I have started, it feels necessary. Like I have an obligation to myself to make sense of it all and, by writing about the ups and downs, I validate our story.

Kris fleshes out her blog with real life. L is a husband, father and firefly catcher with his daughter. He is so much more than the illness that he lives with. I am trying to do the same thing; show my daughter as a vital, funny, complex individual.

I am happy to pass this award to Barbara at Recovery Happens. She is simply amazing as she negotiates the difficult terrain of her son’s addiction and the recent discovery of his underlying mental illness. It is scary and overwhelming and she continues to be a big-hearted contributor to other blogs with compassionate comments.

I will also pass this award onto Sandy at A Glass Half Shattered who without reservation gives us a glimpse into her battle with mental illness. She is a wonderful wife, mom and writer – so much more than the label of her illness would indicate. Transcending her difficulties, Sandy writes with honesty and humor. I look forward to reading her posts, hearing about her kids and lately about her fabulous husband. I read  hope in her blog. The hope that I hold out for my daughter. Sandy’s full life is an inspiration.

I am also very excited to be able to pass this award onto Stephany at Soulful Sepulcher who has given me so much in recent weeks. This woman is a force to be reckoned with! She is smart and sensitive. She is a fighter but has learned over the years to take care of herself so she’ll be available for the long haul with her daughter. Stephany has given me more than she’ll ever know and I am happy to be able to give her what seems so small in comparison. Thank you, Stephany.

xxxxxxx

On another topic entirely, does anyone ever get comments that are copies of something that either you have written or that has been written to you in a previous comment. Recently, I received a comment that sounded very familiar and I realized that it was one that was sent a couple of months ago from a reliable, kind source copied word for word. Today’s was even more unusual as it was a quote of something that I wrote to someone who doesn’t comment here but on facebook. Same topic but not part of the blog. It seems like a lot of work to copy and paste and why? I deleted both to the spam folder. I was just wondering, what is the point?

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Label-less Living

June 17th, 2010

I am going to reconsider how I am going to refer to “mental illness” from here on out.

What exactly are the qualifiers?

My daughter matches the criteria for BPD – every single one of the  nine listed in the Diagnostic Statistical Manual of Mental Disorders. But, not long ago, she was told that she matched the bipolar guidelines, too. There is also the OCD, mild autism and PTSD.

It is endless but maybe also pointless to try to put a label on her “illness”.

I am not even sure that you can categorize my daughter’s episodes consistently. Sometimes she is mortifyingly depressed and feels that life isn’t worth living. Sobbing and sitting inert on the couch, I can barely get her to eat or stop eating.  Other times she is so obsessed with finding the right combination of clothes that she couldn’t  contemplate anything except the texture of her skirt against the tee shirt she has on.

Whatever is going on, it is not consistent. So, why try to categorize it. There is a blip, a tremor in the works. But, it evens out and she makes plans to go to Australia.

Since she fled Austen Riggs, now more than a year ago, there have been many quakes. Some have been earth-shattering and others were just quivers on the scale. She recovered from all of them without the help of antipsychotics. I helped only in holding up the edges of her world, a solid grounding force field in her midst.

The only meds she takes consistently are the benzodiazepines to help her sleep (and because she is addicted to them and couldn’t stop them now without a years-long painful battle) along with an occasional Ambien. Street drugs? I don’t know. Does Adderall count in this category? Yes, that too. Alcohol? Yes, probably too much. I don’t know what the continuing use of benzos does to her brain. Loss of memory, inability to concentrate…  I can only guess that the benzos along with the alcohol can’t be good. But, it is relief that she knows she can rely on.

I am wondering if the episodes she experiences aren’t the leftover life-long damage that the psychiatric drugs did to her brain. She was definitely not well when we started to look for help. But, is she any better now after years of heavy psychiatric drug use? Are the episodes any different?

Since I am now convinced that it cannot be solved by rearranging the chemicals in her brain, her only recourse is to do what she is doing: She lives her life between episodes like there is nothing “wrong”.

When she left Austen Riggs in the winter of 2009, she didn’t bring any labels along with her. She left behind years of doctors’ and treatment “experts” classifications. Their branding haunts my daughter but, they also plague me. Every time that I uttered the sentence, “My daughter is mentally ill” my stomach clenched and the words felt like rocks in my mouth.  I had to use huge effort to enunciate the words. They made me choke up. After and encounter where I’ve  had to explain my daughter’s behavior, whereabouts, etc.,  I feel wasted.

I don’t know how I will answer this question in the future.

How is she? I told someone yesterday that she was going to Australia and the person nearly tipped over. Ha! It was great!

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The Cycle

June 16th, 2010

My daughter is doing well. Lots of plans. Off to Australia for a photo shoot the first week in July. She is busy getting her apartment packed up because when she returns she will have surgery on her foot. She is in a fifth floor walkup and wouldn’t be able to negotiate the stairs with the crutches that she will be on for a couple of months. She is sorting through her things and arranging for a mover. She is going to try to find someone to sublet her place for the final couple of months of the lease.

When her foot has healed, she and the ex-father are going to try again in their off-and-on-again relationship. He is putting her in charge as the manager of a new restaurant he is opening.

Exciting? YES! But also stressful and demanding.

Yesterday I asked how she was. “Good, mom. Really good.” We talked for about a minute. She sounded chipper but tired.

It was less than a month ago that she was unable to get dressed or leave her apartment for days.

The cyclical nature of this illness makes me nervous.

What if? What if it all comes tumbling down and she is on a BMX bike (subject of the photo shoot) thousands of miles away and all systems shut down? Then what? I can’t go to Australia to pick up the pieces!

I want her to live her life to the fullest. I know that she will self-medicate to push through but even that sometimes doesn’t work. Example: two weeks ago when she called and I came running.

But, then again… maybe it will all be ok.

Stress is her nemesis. She is already worrying about the impending surgery. The photographer is a friend but there will be lots of pressure to preform in a timely fashion. All the while, she will have the anxiety of functioning at her best for the ex-father hanging over head. He has never believed that she is struggling with anything other than being a spoiled brat.

I am holding my breath. I want her to succeed. I want my daughter to be everything that she believes that she can be. But, I also know that she has put a lot on her plate and she is a perfectionist and when the smallest part of the plan falls through, she might go down with it.

I am the keeper of the HOPE TORCH. I am forever optimistic that she will conquer her problems and step into her old/new life. The one where she is funny and smart – all the time. The one where she gets up in the morning, gets dressed and hits the day full of confidence.

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