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Treatment Resistance

Posted on May 15, 2010 in DBSA Support Groups and Conferences Depression Psychotropics Stigma

square664Before I went to DBSA National two weeks ago, when I ran into a person for whom the meds weren’t working I had one response and that was to think “There but by the grace of God go I.” Encounters at that conference and with some of my own members have changed that reaction. I met — for one — a writer who had lived with depression for nearly twenty years. None of the medications she has tried — and she has been on them all — has worked, so she has chosen to take no meds at all. Members of her support group have told her that she is on a wicked path: if you don’t take the meds, they say, you are being noncompliant and willfully resisting treatment. Secretly, I suspect, they worry that some of her stand will rub off on them and they will stop taking their meds, returning to the dark lands of depression and mania from which the medications saved them.

I’m on her side here. The reason why I take medication is that the benefits they offer in the stabilization of my moods outweigh the side effects. But if they don’t work, all you get are the side effects. So why press her? She told me that she will keep trying new medications as they come out. Hope for a medical cure remains alive in her heart.

One of the speakers at the convention was Paula Kamen who wrote an interesting book about her experiences fighting a fifteen-year-plus-long unending headache (([amazonify]B002BWP68G::text::::All in my head – An epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening headache[/amazonify] by Paula Kamen)) writes of the different ways that people responding to those with untreatable chronic conditions fail to help. She gives several examples including the case of a Dallas, Texas neurologist who told his patient that the reason why her course of treatment wasn’t working was because she didn’t believe in God enough. Others will refuse to prescribe narcotics even when the pain is severe and all other remedies have been exhausted. Alternative healers with their kneejerk diagnosis of a “lack of balance” will often belittle patients when their poking, prodding, and remanipulation of the spinal column yields no relief. Of these, she writes

Don’t insult us and belittle us with the argument that pain is all a result of the body trying to communicate a message, like we’re too angry. If you told someone with cancer or diabetes that, you would be considered cruel and even stupid. This is a double standard for people in pain, another version of dismissing the pain as purely “psychosomatic”….don’t assume that the mind always has “control” over the body, that it is just a matter of changing thought patterns.

The control argument is often used as a hammer to goad those suffering from intractable depression. I know of one woman living with bipolar disorder for whom no antidepressant measure worked for six years. She enjoyed a period of remission, only to see it followed by the commencement of yet another episode. Psychiatrists attempted to pressure her into [[Electroconvulsive_therapy|ECT]], but she would have no truck with the notion of zapping her brain. When I visited her at the Quaker meeting house that she calls her spiritual home, I spent about half an hour talking to someone who felt that the solution was to get her off her medications. Yet doing so would lead to a catastrophic cascade of moods. She remains on the medications because despite their shortcomings, they do allot her a measure of relief. If this is not part of your equation, you have little business advising the person to choose one therapy option over another. You have no business at all warning against psychiatric or alternative health “conspiracies” if the person in question is finding acceptable comfort from therapy.

As for changing thought patterns, I have found that in my personal experience this can take the edge off of a depression, but it has never cured one for me. The woman who I met at National feels this to be true as well. She described a life where depression sits in her lap every day. She can’t dismiss it because it is potent. The Beast (as I have called it) can only be tamed by cognitive therapy to a certain degree for some of us. If the medications or other therapies work, then we live full lives. If they don’t, then we must eek out our existence doing what we can with tools that can blunt but never rid us of the sword.

To say to people with untreatable depression that they have failed in their drug regimen or their exercise program ((One symptom of depression is that sufferers just don’t feel like engaging in physical activity. Walking a mile can be more a sign that the depression is lifting than a cure.)) or herbal medicine or their thinking is insensitive and barbaric. Hope can go a little way. But what is most lost in any kind of pain is a sense of belonging to the human race. Friends don’t like to hear about our failure as we battle deterioration from disease. Yet their love is vital.

Please Shoot Down This Blimp

Posted on May 1, 2010 in DBSA Support Groups and Conferences Depression Encounters

square655I’m reaching that point where my earlier fears about where I was being taken have manifested themselves for real: a blimp of a depression rides in the middle of my head and I can’t pop it. Mitchell from New York said that he took me for an extrovert: like so many, he doesn’t understand that the issue is not dislike of people, but being quickly tired by them. And I have come to a place — of exhaustion, fear, and disappointment — where I both crave and vomit the company of others. Some extrovert I am who has run to a quiet corner of the DBSA National Conference to let his feelings bleed into an LCD screen.

I think myself an odd duck — stuck in a place that perplexes even those who are allegedly most like me. I’ve wondered if I am truly bipolar, then am told that it is “not meet” as Shakespeare might have put it to label myself with the illness: I am required to see that I am a person living with bipolar disorder. In this place, I doubt I am even a person, certainly not like the ones who are all around me. I feel freakish, bizarre, a disturbing if interesting specimen of humanity who bores and perplexes. Then there is that other question: why, if I can remember the details about the things that I did while in episode, why can’t I remember the feelings that impelled me to be one way or another? I walk around feeling an imposter who takes Tegretal, feeling doubt that I belong among the so-called sane, and that amidst all these others I am a tile in the floor stepped on and ignored.

Last night I ate dinner alone and tonight I shall undoubtably do the same when there is no forcing together of the peoples by schedules and included-in-the-price servings at tables in the outdoor pavilion. A man comes to open his laptop on the other side of this table and I want to squeal Please go away. If I didn’t want to hear Glenn Close’s sister at 4 pm, I would end my day in my room. Someone please shoot down this blimp. It weighs me down.

Travel Nerves

Posted on September 9, 2009 in Travel - Conferences

square605I’m nearly shaking as we check our packing of the bags for our trip to Indianapolis for the DBSA National Conference. An empty pit in the stomach won’t be filled no matter what I shove into it. Have given much thought to how I am going to organize the contents of my pockets so that I won’t take up too much time when I go through airport security. Don’t worry. I’ll settle in as soon as I get through the gates.

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A Cow in a Marsh

Posted on October 7, 2008 in DBSA Support Groups and Conferences Depression

square485I’ve fallen in a depression which has more to do with my missing a dose of my mood-stabilizers two weeks ago followed by missing a dose of my anti-depressant yesterday than any life event. I fell so hard after a week or so of light mania that I began to ache in my chest and in my head as I mucked around like a cow in a marsh trying to find a meadow.

The California State Conference for DBSA was the subject of the weekend. The feel of this compared to the National Conference in Norfolk was interesting to observe. At National, there was an emphasis on finding a meaningful life for yourself while at State there was the usual “get a 40 hour a week job and we’ll call you cured”. With my volunteer activities (I recently received an award for them given by GWB of all people), I would qualify as a failure rather than a success.

I don’t get why therapists are so out to put you in a full time job, especially when stress has precipitated me into many a depressed or manic state. I’m told that at fifty years of age I should go back to school and get a “real career” instead of the volunteer mission that satisfies me. There’s the usual “do what society expects of you” instead of doing what feels right and good to you.

What bothers me the most now is that I don’t feel much like writing or photographing. The photographs that I have taken don’t seem to excite others, so what’s the use, I think, even if I find they do something for me? I know this is the depression talking, but would the others on the outside shut up so I can ride this through? The life whose leather I find myself wearing is my own. Don’t try to skin me and throw the hide of a wolf or a plough-horse on my back.

[tags]depression, bipolar disorder, careers, career, choice[/tags]

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2006: The Year in Review

Posted on January 2, 2007 in Roundup

square163There are those who have used things that I have written in this blog as a way to attack me for the sake of gathering power for themselves and those who have told me that because of these attacks, I should not keep a blog. This is a response, a testament of truth about the thoughts I had over the year. And in giving this, I offer my thanks to those who expressed their affection for me because I spoke my mind.

Began the year with reflections on the differences between me and the unafflicted. Some crosstalk about stigma and the way the unafflicted view us follows. I remember my first sociopath. (And more arrived in my life, unnoted, this year.) Questions about using sanity as an excuse for boorish behavior. The price of being deterred from seeking psychiatric help and the costs of living within a bubble beneath the sea. The Mania Meme. An encounter with an osteopath. Confused by my language? Here’s a glossary. Tom Cruise might learn from Why I take meds — but I doubt he’ll try. The depressive side of bipolar disorder as a black hot lava bomb of narcissism. Belief that there were WMDs in Iraq amounts to a normie delusion. A very rude man who needs to be on lithium. Feeding Ecstasy to pigs. “How are you?” as a means of interrogation. Tips and more tips for talking to a bipolar. Biblical parenting.

How anxiety makes us think better. My knee gives out. How compliments and positive predictions served to bring me down. Where blue stands for numb and green stands for living again. On being a boring bipolar. How I was affected by the film Capote. Life and the World reduced to two Big Black Steel Balls. Wreaking positive change tires the heart. Easter as a lonely holiday for an agnostic. Using bipolar disorder as a way to fend off Nigerian email scammers. What I said to a refusenik about the meds and the disease. The time I thought myself a stalker. The nature of my cycles does not follow the classic “crash” scenario. Lost at Sea with Vincent. Why I don’t see many blank faces. Bullroarer. Why it must be safe enough to talk about our symptoms and our frustrations and how some people make places unsafe. Where cotton replaces razor blades as the feeling of suffering.

Experiencing asthenia. Therapists among the bipolars. The odd knobs of the past and cloaks of confidentiality. Mania as a horizontal landslide. Hallucinations. The side effect of drumming my feet. Where I eschew the “different realities” cop out. (I do it again here.) The Sims 2 Bipolar Edition. A friend dies and a subsequent bout with angels. Then eight days of silence. Followed by an account of my recovery with notes on meal planning while depressed and about blown minds. I only wrote one article about my participation in the DBSA national conference. It was about Tom Wootton and The Bipolar Advantage.

Is finding myself interesting egotism? Being misdiagnosed in college. Aerosol chemotherapy (aka Santa Ana Winds). I describe the shape of the missing piece. What happens at four in the afternoon. I will not hold back holding back. On the origin of small hopes. Asking for a face instead of a hockey mask. Why I have trouble answering lies in a public setting. How the barroom afflicts even the sober. A single phrase about obsession. Don’t give me “I did the best I could“.

All of this and many things more were me.

Resolution for 2007: Not to punish myself for being more in touch with my feelings than others or for having the guts to be truthful and open where others prefer to hide.

(more…)

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YES!

Posted on August 7, 2006 in DBSA Support Groups and Conferences

I received a scholarship to the DBSA Conference in San Mateo!

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Are You Coming?

Posted on June 11, 2006 in DBSA Support Groups and Conferences

The conference details have arrived! (Click on the image!) Whether or not you are active in a DBSA chapter, you can apply for a $500 scholarship to attend! (Go ahead and try! You might get lucky!)

Sid says she wants to go to Chicago. I am going to San Mateo. What about you? Will you meet one of us at these conferences?

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X-People

Posted on October 13, 2005 in Compassion Stigma

square138Living with mental illness gets to be like appearing in the boxes of an X-Men comic book or film: either you seek to live with others like Professor Xavier or you revel in your mania as Magneto revels in his power. We have plenty to fear from the rest of you: we are four times more likely to be the victim than the perpetrator of violent crime.

Beast Policymakers and pundits pay as much attention to this fact as creationists and intelligent design proponents pay to the fossil record. They are quick to blame crime on mental illness, slow to admt that they represent more of a threat to us than we are to them. When they draft laws about the mentally ill, they draft them to contain us. It is true that sometimes we need to be constained until our medicines can take effect. None of us wants to end up burning up in her own tent because we don’t have the money to pay for our medications.

The people who attended last weekend’s conference were, for the most part, a lucky bunch when it came to being able to afford the meds they needed to function. We had good insurance or enough money of our own to cover it. Despite this, we remembered those who the system did not help, the ones who it locked away in “treatment facilities” like the Los Angeles County Jail which is the largest repository of the mentally ill in the world, where the mentally ill prisoners get to wear banana colored suits emblazoned with the yellow letter M. The lucky ones did not like what has been happening to the working class and the poor.

This is just one way that the police “misdiagnose” and mistreat sufferers of brain dysfunction. People in mania are often mistaken for meth addicts. Not a few are beaten. Many end up in jail where the System refuses to recognize or even check their claims. A few get to county hospitals where they might be misdiagnosed. Or else they are released by the courts into the hands of predators who either dump them on the street or attempt to exploit them.

I have a friend who went through just about all of this recently. During her mania, she stole a pair of shoes. Or rather walked out of a store wearing said pair of shoes. At her trial, she produced papers which showed that she’d spent the following weeks in a hospital. The cold eye of the law as fashioned by Retrogrades chose to ignore this fact and threw a $300 penalty at her. Not much if you are cared for by a spouse, but a lot of money if you’re scraping by on Social Security.

Hearing about the danger of “lunatics” running around on our streets makes me laugh blackly. True, I have seen one or two people who have hurt others in rampant manias, but these rages are hardly organized — unlike the methodical actions of sociopaths (who do not suffer from brain dysfunctions for the most part), gangs, religious zealots, parents, spouses, law enforcement, and politicians who draft laws to contain us. If you want to understand the obstinancy of bipolars and schizophrenics who do not want to take their pills, then you need only reflect on how many people around them want to run their lives for them; an ambition of power that is often accompanied by violence.

I do take my medications as do most of the DBSAers I know. Looking back at the era when mania and depression wrestled like Jacob and the Angel for my brain, I can also understand the origins of the paranoia. I need only read a news story which has to identify a criminal as “suffering from bipolar disorder” (do they ever say “And the culprit showed no signs of any mental illness?”) ; or hear about how hard the baton of an uneducated cop can be when it is cracked across the hips or over the skull; or listen to a clueless pulp blogger call someone else “bipolar” or schizophrenic — to know what they fear. They don’t want to give their minds over to the ignorant and I only half-blame them.

These represent the Magnetos of the mental health clientel, the ones who rage rage rage against the curing light. I would number myself among the X-Men, ones who have good reason not to trust “the normies” but who continue to try. All our lives we have been told to get along with them. We do our best. Those who live around us owe us a return favor: learn to get along with us. Statistics show that the “well” are the dangerous ones. Don’t lock us up for crimes we do not commit or let those who assault us go free.

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Glenn and the Strange World of Sleep

Posted on October 11, 2005 in Travel - Conferences

square135When you travel on a scholarship to a national mental health conference, to save money the sponsoring organization will bestow a roommate upon you. Some are demons who pitchfork every rule, eviscerate every common decency, and then lose their temper when you stand up for yourself. Occasionally you get an angel whose entry and exit flutters by so softly that you could almost believe that you have the room to yourself. And then there is Glenn who was neither. Glenn was just himself.

I won’t speak of Glenn’s positive or negative qualities. Rather, I shall attempt to write about the synthesis that results from Glenn being Glenn. I’d have him as a roommate again. He was easy to work with. And his idiosyncracies made me laugh.

Glenn’s shorter than I am by nearly a foot. He walked around in Fort Worth’s fifty degree weather wearing a Hawaiian shirt and shorts. (None of us had thought to bring sweaters. After all this was Texas.) His bad hip did not prevent him from walking from the hotel into downtown Fort Worth and back. The only indication he gave that he was suffering was his slower pace. Gay, another DBSAer from Southern California, and I either stopped to wait for him or slowed our pace. Glenn did not complain, though we urged him to do something for himself about his damaged hip.

On our first night in Fort Worth, Glenn fell asleep on his bed with the television control in his hand. Now and then, his thumb would twitch, changing the channel. I waited until this technique found something I liked and then gingerly removed the control so I could watch it uninterrupted.

When the program finished, I called Lynn to tell her the number of the hotel. As I read it off the stationery, Glenn repeated each number:

“Eight,” I said.

“Eight” said Glenn.

“One.”

“One.”

“Seven.”

“Seven.”

And so on through the seven remaining digits of the number. Then I said “We’re in Room 805.”

“Room 805,” said Glenn. He paused for a few seconds. “That’s our room.” I glanced over at him, barely able to restrain a choking laugh. My roomate lay slightly over the side of the bed, almost falling. His eyes were shut and his mouth half open. His glasses teetered on the edge of his nose. My man was deep in his own skull and he snored. I let him be.

The next day, I told him about his echolalic behavior. He tilted his head forward and adopted a serious look. What had caused it? Should he tell his psychiatrist? Was a new era of lunacy dawning. Glenn, Gay and I assured him, it was probably nothing. Just a ghost from the strange world of sleep.

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