Diagnosis changes

My first diagnosis was social anxiety. That still fits, but when I started having more severe thought and mood symptoms it was obvious there was more going on.

Originally that was diagnosed as bipolar I. That never seemed to fit well. I would read the textbooks and they didn’t describe me well. I would go on-line or to in person support groups and I would feel like I didn’t quite fit in.

After a long period of psychosis where I had been in different mood states (including neutral) my diagnosis changed to schizoaffective disorder, bipolar type (as opposed to depressive type).

In a way this was a relief. My symptoms fit more neatly. It just made more sense. My psychiatrist told me he had always held that diagnosis as a rule-out, it just took him a long time to decide. Every doc since then has agreed. I was told the prognosis is the same.

It can be scary to have any mental illness diagnosis, but I think anything that starts with schiz can be particularly so. I just want to say that nothing changes with a label. You are still who you were and you can get more focused treatment.

When I was first reading up on mood disorders I came across a set of articles on schizoaffective disorder by Michael D. Crawford. I wanted to scream. this is me. No one cared, because it was a different label than bipolar. But, I went back to it when my diagnosis changed. It had moved to Psych central. I could still relate to it.

That was in 2006. I am sure there are other articles and blogs and some will speak to others differently. I do have a goal to make a webpage like that. Something that might help someone else who is floundering through.

“Citizens Commission on Human Rights”

Here is an organization that some of you may be familiar with.  It’s CCHR, the self-proclaimed “Citizens Commission on Human Rights.”  It refers to itself as a “watchdog investigating and exposing psychiatric human rights violations.”  www.cchr.org.  A review of its web site and claims provides a valuable lesson in prejudices and falsehoods about mental illness, as well as fallacious reasoning.

The group purports to “expose” the harmful effects that the supposedly bogus psychiatric drug industry has on Americans.  They deny the usefulness of psychiatric drugs to millions of people.  Indeed, they deny the very existence of psychiatric illness, as remarkable as that is.  Their web site is full of inaccuracies, distortions and hokum.

Here is a juicy piece from their web site that powerfully demonstrates their extreme ignorance of the uses and benefits of psychiatric drugs:

“Once reserved for the mentally disturbed, today it would be difficult to find someone—a family member, a friend or a neighbor—who hasn’t taken some form of psychiatric drug. In fact, these have become such a part of life for many people that “life without drugs” is simply unimaginable.”

“Mentally disturbed”?  What does that mean?  Would I find that in the DSM?  It’s also not a particularly flattering or respectful term for people with brain illnesses.

An excerpt from their web site incorrectly and disingenuously denies the very existence of psychiatric illness:

“Psychiatric disorders are not medical diseases. There are no lab tests, brain scans, X-rays or chemical imbalance tests that can verify any mental disorder is a physical condition. This is not to say that people do not get depressed, or that people can’t experience emotional or mental duress, but psychiatry has repackaged these emotions and behaviors as “disease” in order to sell drugs. This is a brilliant marketing campaign, but it is not science.”

This is a classic false premise fallacy.  If you cannot “prove” by a concrete lab test or “chemical imbalance test” that someone positively does or does not have a particular illness, it does not exist.  There is no “disease.”  False.  The presence of an illness need not depend upon a litmus test.  Brain illnesses are real medical diseases.  They do have roots in genetics and brain functioning, as well as personal history and other factors.  And they are diagnosed subtly through a process of rigorous questioning and psychological and medical treatment.  Diagnosing and treating mental illness is not as easy as this group makes it sound, but that does not detract one iota from the scientific nature of these processes or the illnesses they concern.

Here is an outright lie:

“Authors Richard Hughes and Robert Brewin, in their book, The Tranquilizing of America,warned that although psychotropic drugs may appear “to ‘take the edge off’ anxiety, pain, and stress, they also take the edge off life itself…these pills not only numb the pain but numb the whole mind.” In fact, close study reveals that none of them can cure, all have horrific side effects, and due to their addictive and psychotropic (mind-altering) properties, all are capable of ruining a person’s life.”

While some medications may cause a numbing effect in some people, it is totally misleading to suggest that all or even most psychiatric meds “numb the whole mind.”  It is even more outrageous to state that “close study reveals that none of them can cure” mental illnesses.  True, many mental illnesses are not “curable” as such, but neither is diabetes.  The point is that these medications help improve the lives of people living with real, devastating, and sometimes life-threatening illnesses.  Millions of people.

Here is a classic guilt by association fallacy:  “Consider also the fact that terrorists have used psychotropic drugs to brainwash young men to become suicide bombers.”  First, the term “psychotropic drug” could mean anything from prozac to heroin.  Just because some criminals or violent radicals use drugs to influence people to nefarious purposes has nothing to do with drugs used to help people.

Here they claim that 78 million Americans are taking psychiatric drugs:  http://www.cchrint.org/psychiatric-drugs/people-taking-psychiatric-drugs/

I have not been able to find the specific source of this alleged study, much less examined the results.  I would appreciate anyone who has a lead.

Here is another “source” that has worked its way around the internet:  “We do not know the causes [of any mental illness]. We don’t have the methods of ‘curing’ these illnesses yet.” —Dr. Rex Cowdry, psychiatrist and director of National Institute of Mental Health (NIMH), 1995″

I see this exact quote on many web sites, with the same brackets.  But I can’t find the full text in which this edited statement occurs.  If I can’t find the full text, I don’t know the context. In any event, even if it’s correct, it’s use is misleading.  We do not know with 100% accuracy the specific roots of mental illness in a given individual.  But science has a pretty good idea of the range of causes for mentally ill people in general.  They include, variously depending upon the individual: genetics, family history, personal history such as sexual or physical abuse, trauma such as the loss of a loved one or involvement in war, other stressors, alcohol or other substance abuse, and other factors.  These risk factors often work in combination.

Do we know everything about what causes mental illness?  No, of course not.  But neither do we know everything about cancer, but that does not mean that cancer is not a medical reality and that there are not treatments for it.  The point is that for both mental illness and many other medical illnesses–including cancer–we know just the tip of the iceberg.  But science is learning more and more people every day.  And it is able to help more and more people every day.

This is all not to deny that there may be some over-medication.  It’s also not to deny that there is a large, powerful corporate complex profiting from pushing all kinds of drugs on people.  But what it does mean that we cannot deny either the real, medical nature of psychiatric illness or the genuine benefit that many drugs do provide for millions of people.

In any event, I’ll finish my screed by pointing out the lesson of all this:  beware of bullshit and the many forms in which it comes.

A half forgotten song

I heard the song only once. It was the end of the quarter crunch at my college, and the computer center was crowded. The fact that we all had to go to a computer center with mainframes to get our work done, I know, dates me. I remember the song, or half remember it, partly because the tune was catchy, and the words just repetitive enough to be memorable, but also because the occasion was unusual. Many times I had listened to some other student sing and play guitar, in one or another living room or bedroom in student housing, or when the coffee house had an open mic night. Never before or since did I hear someone sing and play in the computer center, sitting right beside the terminal where we entered ourselves in the queue for computer time. As the queue was long, I got to listen to the whole song.

I don’t know whether it was a song by a professional artist, that I only heard the once, and can recover, if someone else happens to recognize the words I have remember, or whether it was a song composed by the student who sang it, perhaps now forgotten by nearly everyone else except the singer. I’ve half remembered both. There’s the song one of my college roommates loved, “Wake Me Up Gentle,” which I’ve recovered once I found someone else who knew it. But there’s also a snatch of lyrics that I still remember from a guy I knew in high school:

And it’s hey, hey, I’ve been in the night,

Looking for a brighter view of life.

I’ve been in the middle, when I should be on the side.

Time and again I’ve changed my aims,

And find myself on old St. James,

To see what I can salvage from what washes in the tide.

And there’s another that I half remember that was written by a college friend:

Leslie, can your guitar come out and play today?

It seems to me it gets a little lonely,

Sitting there in your chair.

Leslie, can your guitar come out and play?

This song might be one of those. It was, I would say, a passionately “one day at a time” song, and I am reminded of it often when someone says some version of that phrase. The first verse began, “If only I can make it through today,” and I remember some of the rhythm of the rest of the verse, but not the words, because a single hearing is rarely (only once, really) enough for me to learn a song. The second verse began, “If only I can make it through this week,” and the next line, perhaps, “Maybe then the future won’t look quite so bleak,” or something of the kind (that was definitely the right rhythm. And so it built up to the conclusion, “Still, I think I’ll try to make it through this life, if only I can make it through today.”

If anyone has ever heard of the song, and can fill in my memory, feel free to let me know. If no one else knows it, I have half a mind, someday, to write my own version of the rest of it, just so that, when it comes to mind, I can have a whole song running through my head rather than less than half a song.


Dealing with anxiety over the holidays

I wrote another article for “The Mighty” that I wanted to share


At my house, we celebrate both Christmas and Hanukkah. The kids love it; twice the parties, more gifts and more fun. But for me, this means twice the stress and more anxiety. And while most of the severe symptoms of my mental illness are under control, it can be harder to manage my anxiety as the holidays approach.

But I’ve learned little adjustments can make a huge difference. Here are some things that help reduce my anxiety over the holidays:

1. Take two cars to a holiday party.

It’s easier to relax when I know I have an exit plan. If my husband and I take separate cars to an event, I know I can leave at any time.

2. Find a “safe space.”

When we’re at a holiday party or family gathering, I make sure I find a quieter room or place outside to get away from all the noise. Or I spend time with the animals if there are any pets. It just needs to be a space where I can recharge.

3. Give yourself permission to walk away from upsetting conversations.

There’s always that one person who wants to argue about politics or compare achievements. I used to dread holidays mainly because of these uncomfortable interactions. Now, I know I don’t have to listen. I can walk away or not participate.

4. Keep it low-key.

In my house, we don’t feel pressure to entertain guests or worry about buying the “perfect gift.” There’s so much going on already, we don’t want to add to the stress by holding unrealistic expectations. We try to keep it low-pressure and enjoy what we have.

5. Know it’s OK to say, “No.”

Around the holidays there are lots of opportunities to help others, but if making that batch of cookies or running that errand is going to cause me too much stress, I have started saying no. The holidays are a time to give, but it’s important to know your limits.

6. Accept help.

On the other hand, if people do offer me help, I’ve learned it’s OK to accept it. I try to remind myself they wouldn’t ask if they weren’t willing.

7. Remember to actually enjoy yourself.

As much as there are parts about holiday gatherings I don’t enjoy, there are things I like. Certain foods, smells, people and seeing the children’s excitement. I try to enjoy those special moments — it keeps the holidays in perspective.

The Life and Times of the Agnostic Messiah

This is a slightly modified version of the email that I sent to Joel a few days after my most recent psychotic episode.

Hey Joel. This is Misrael. I have some stuff I need to get off my chest, and I’m not sure I’d be great at sharing verbally right now.

For one thing…when I thought I was G-d? I always knew I was Misrael too. About halfway through my stay…I realized I was not the Messiah. I realized I only had the potential to be (this person is called the Moshiach in Judaism). I was yelling about that in the clearest terms I knew how, and yet that shift in thinking is probably not even on my medical records. When I was talking to you in word salad? I knew I couldn’t speak properly. Believe me, I was humiliated. I was also humiliated that I had to beg all day for restraints, and only got them when I started banging my head against the wall out of frustration. I was so humiliated by being on the Ward that I was begging onlookers to rape me. I only felt there might be hope when they started taking me semi-seriously. All I know is that I was closer to losing my identity as Misrael than I was to losing my identity as G-d!

I had a lot more respect for the other patients on the Ward than I did for the nurses. Despite that, I always took my meds. And I’m glad! They shoved meds up this one girls butt. I discussed this with my psychologist. Even she thinks it was unnecessary, considering the circumstances. I told the patient to file a complaint at the time. Most ornery patient on the Ward, and she brought me a cup of water. She knew I was constantly thirsty. I’d get into rages…but I don’t remember being angry…just scared.

So now you have the highlights. What did I learn? That it’s the little things in life that matter. That you don’t have to be a theist to have religious mania. I can’t even listen to popular music without thinking I’m G-d these days! And in some ways, this is normal. In other ways, it’s not.


P.S. You did the right thing where my boyfriend is concerned. I wish you’d put up a poll on Moodswingers so that we could all have a say in whether he is welcome…but what you did was good enough. So thank you.

Do not resuscitate

The hardest thing about taking an elderly dog to urgent care for a possible seizure is the decisions to be made. I think that the little dog, who is all heart, would, if he were the one making the decisions for me, say, spend every penny for the least chance of keeping his mommy with him a little longer. But I, more analytical, weigh the odds of success and what I expect his quality of life would be. I turn down the X-rays, to search for possible cancer elsewhere in the body that might have spread to the brain, because if a thirteen-year-old dog with a heart murmur now has metastatic cancer that includes a brain tumor, there is no way I’m taking him through cancer treatment. In fact, if he has a brain tumor at all, I won’t treat it. I’ll keep him comfortable and happy for as long as possible. For the same reason, I mark “Do not resuscitate” instead of “CPR” or “Advanced CPR.” And say yes to the overnight observation, the IV, the blood tests that he didn’t already get from his regular vet last month, and an anti-convulsant should he have a seizure while they’re watching him.

He didn’t have another seizure. We’re not sure if what he had yesterday (a couple of minutes of being unable to stand) was a seizure; some cardiac event is also possible. The blood tests came back fine, and Drake stayed chipper overnight, and is in good spirits and walking and climbing stairs today. It’s anyone’s guess how long he’ll stay well, and how much longer we’ll have with him.



Sorry, I haven’t written for awhile. I got a job and it has thrown me off my regular routine.

I almost can’t believe I am working. It is part-time, as a peer mentor. They know of my diagnosis and will understand if I have symptoms.

I have only been there for a month. I was excited to get a paycheck. I took my mother-in-law out to dinner. It was nice being able to treat her.

It is really slow right now. We are just getting ready to open. I know it will change. I have a great schedule, but I don’t know how I will adapt to getting going in the morning.

If you have a serious mental illness and have been disabled for many years, there is hope that you can achieve your goals.

I have no idea what the future holds but I really wanted to at least attempt to work again.

Travel and Stress

We’re back from our big trip, and we have had a week to recover from jet lag. On the whole, the trip was great. But since this is a blog about mood swings, I’ll talk about the stressful parts, and dealing with them.

For me, the more neurotypical member of the family, the main stress of travel is the fact that I have a lifelong phobia of vomiting. Travel offers triggers for that. I’m going on a plane. What if I get air sick? I’ve never been air sick, but there’s always a first time. So I put sea bands on my wrists, and take Dramamine, and bring ginger candy to eat, just in case. Then there’s the opportunity to get sick in other countries. We saw a travel doctor, and got all the cautions: Don’t drink the water. Don’t take ice in your drinks. Don’t eat fresh vegetables. (When you get a tasty looking salad brought to the table along with the cooked meal you ordered, just eat the cooked food and give the salad a pass.) And we got antibiotics, which came in handy when my husband slipped, had a sandwich with a bit of lettuce and tomato, and got sick.

For my husband, who has bipolar disorder, there’s another source of stress: time changes. We had a couple of long days when we barely got any sleep because we were travelling for, say, 24 hours. He got an increase in his mood stabilizer to ward off mania, and did his best to get onto a good sleep schedule quickly.

Then there are the ordinary stresses of the trip: He lost a crown in London, and needed an emergency dental visit. We got pickpocketed in Paris, at the cost of 80 euros. We almost missed one flight (but convinced them to let us check in an hour before departure, though they said at first that check in was closed). And there are a large number of things that must not be lost, meaning inevitable searches to find one or another of these things.

Finally, there’s the return home, with all the ordinary household inconveniences while we’re still jet lagged.

On the whole, I think we did pretty well. Seeing the travel doctor beforehand helped, and having my husband talk with all his doctors and his psychiatrist ahead of time also helped.


Madness in Senegal

I wasn’t able to arrange any interviews. The doctors in the Senegalese mental hospitals were defensive, fearful that I would paint a bad picture of conditions, or busy. The assurances of the State Department staff who were helping me didn’t sooth this naive patriotism or persuade them to give me half an hour, but I learned a little. There’s no social security in Senegal, so the mentally ill either rely on the care of their family or begging. I didn’t see many people who struck me as being afflicted on the streets (unlike London and Paris), so I assumed that they had been assimilated into the crowd and received care of sorts from other dwellers of Dakar’s streets.

The luckier among the mentally ill receive support from their families who send them to mental institutions where they receive treatment in the form of psychotropics. These help as long as the money holds out — a familiar story to those of us who remember the dark days before Obamacare. I can’t tell you about the conditions in the hospitals; so, I don’t know if they followed the best standards of care or if they were dank prisons where patients were chained or locked into padded cells.

Mental illness is recognized even in the more remote and traditional areas, which refutes the myth that people in Africa regard people living with schizophrenia and bipolar disorder as holy. Instead, they are ostracized and feared — as they have always been.

Most of the mentally ill disappear into the mass of people walking the streets of this city. They are ignored and forgotten, their symptoms shrugged off which is not the reverence of the myth makers. There’s rumor of an American in one of the suburbs who is in episode; there is no retrieving him and taking him home, however, because he will not come into the embassy for evaluation.

If I stayed around, I might see more; time is running out, however.

The Flatland Dilemma in Interpreting Bipolar Mania.

People in mania are known for flights of fancy and the rapid association of ideas. Of all the forms of intelligence that we may possess, it is only the ability to recognize analogies and build associations that suffers when we go on mood stabilizers. I think it can be a mistake for outsiders to believe that this ability leads to wild, random, and unusable linkages in our mind. I find that my ability to write poetry — meaningful poetry — suffered after I started taking lithium; I lost insights. Of course, many other more negative traits like my irritability, grandiosity, and racing thoughts disappeared so I consider it a net gain.

The things we bring back from our adventures in mania land aren’t all rubbish. Poets such as Shelley and Byron depended on their manic states to generate compelling material. Some scientists have conceived startling new concepts. Isaac Newton is a classic example of a maniac whose insights transformed the science of his day and enabled him to revolutionize mathematics with his invention of calculus. The trouble comes when we try to bring our insights back from the fine and private place of our sickness.

William Knowland’s Flatland — which was written to explain the difficulties inherent in Faith — presents a useful allegory for our struggle to explain what we have found. Imagine a two dimensional figure, say a square. Imagine that it is you. Your perceptions are limited to two dimensions, so while you can make out one dimensional figures such as lines and points, you cannot appreciate three dimensional ones. If you were one dimensional, squares would appear as lines to you. Angles and other aspects of the square would invisible.

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