Monday, October 24, 2011

A Card Reading

Well, on a little less medication it looks like I have more energy and less appetite. Lost the weight I gained on that minuscule dose of Seroquil, and I'm happy about that. Looking to lose more weight. Otherwise, art is going well, my mood is upbeat, and no complaints of symptoms of my illness. Today I'm lying low because I had over the weekend back to back days that I spent cleaning the house. The bathroom has never looked so good.

One of the reasons we cleaned so hard was because we had a guest Sunday evening. A woman came over to have her cards read. After, I asked my husband to do a card reading on me. Of course the number one question I had to ask was what is going to happen as I lower my medication?

There is a part of the card reading where there are three cards that represent fortune and three cards that represent fate. Fortune is your will, your actions, and your decisions that impact your life. Fortune is what you control. Fate is what God has in store for you, it is out of your control and it will come and happen if your will does not oppose it.

Interestingly my husband says that fortune and fate are not linked. One does not have to dominate, one does not have to occur, your will can be weak or you can seize the day. Its that old religious contradiction that Christians believe in an all powerful God, capable of manipulating events, who has a celestial plan for everyone, but that this all powerful God gave mankind, his creations, free will to govern their own lives.

Under my fortune was prudence, or careful consideration, pleasure, and stress. Under my fate was my husband's card (he said, look honey, God gave you me to be by your side!), truce, and disaster.

So my reading of the cards and what the future has in store for me, during the next six months (my husband says his card readings are only good for predicting a specific time period that mysteriously seems to be about six months) is that I will like cutting down on medication, and I will do it carefully and with prudence, but that something will cause me stress and a dose of unhappiness. I said to my husband, how can pleasure be next to unhappiness and he had no answer. Life is complicated.

What God has in store for me is loss (another interpretation of my husband's card - perhaps my present emotional stability will go bye-bye), but that my husband will steadfastly stand by my side, that I will come to some sort of truce with the medication, which in my mind is agreeing to be on some type of maintenance dose rather than going free, and that the effects of lowering my medication will be rather unpleasant. The last card for God's plan was ruin, the card of all cards that my husband is most afraid of.

It is interesting the people who will affect me. This is another three card combination. I don't remember the first card, but the second card was a father figure, my Dad, and the last card was a teacher and guider, most certainly my therapist. I had agreed to listen to my therapist's advice concerning medication, but it shocked me that I would listen to my Dad's advice. My Dad is a doctor, retired, but he is very interested in a stable daughter, in the past he would rather have me hospitalized and fixed (an impossibility but they locked me up for two years trying) then out in the world and living independently and eccentric. I joke with people that if science hadn't advanced to drug therapy my father would have had me lobotomized to get me under control and cure me. Nobody likes to think of their father as someone who would prefer lobotomization to your natural state, but this is how I see my father. As a child I thought that he wanted his kids to be dolls, beautiful and perfect, living in a dollhouse that he could show off to his associates in the hospital where he worked.

I called my Dad, a rare occurrence, to have a pleasant chat with him before I lowered my medication. I told my therapist that this phone call was me saying good-bye and giving him a nice memory to hold on to. I didn't know if I would be too sick with my mental illness to visit him for Christmas. I was going to fall from grace when he found out that I was tinkering with my meds, and so far, he doesn't know anything of my plan. My mother however knows all about it, and she is very supportive. Mom is rounding up people to pray for me. And I know that she too is praying for me.

The literature I'm reading is counter to many mainstream notions about schizophrenia and drugs used to treat schizophrenia. Currently the author Dr. Peter Breggin in "Toxic Psychiatry" is citing studies that conclude that schizophrenia is not genetically linked. He thinks that the environment had more to do with developing schizophrenia than the chromosomes do. Its funny because when he goes on television to debate the status quo his greatest enemy is NAMI, because NAMI likes to believe that parenting has nothing to do with who develops mental illness. Parents rather believe that everything is biology than that they might have contributed to their child's mental health deterioration. I guess in a parent's mind the successes are due to their good work and morality, and the failures are due to biology.

The book that started me thinking about coming off medication and Breggin's book both conclude that there is something addictive about antipsychotic medication and that a psychotic relapse is inevitable if you come off of them cold turkey. I sat in therapy and wiggled my finger at my therapist and said, "It might take me a year to come off my antipsychotics" and he said why are you wiggling your finger at me? And I said, it is to myself I point the finger, reminding me to be prudent and careful and that the predicted outcome, is in the short term, is very negative by all that I read.

"Don't do anything hasty" I remind myself, as I seem to lecture my therapist by wiggling my finger at him.

Friday, October 14, 2011

Going off Meds

I recently read a book that really disturbed me. It has led me to consider going off my antipsychotic medication or at least drastically reducing it.

In total, the book had a very negative outlook on what psychiatric drugs to do people (especially children, with their developing brain). Of specific interest to me was chapter 6 all about schizophrenia. Here are some direct quotes from the book.

Excerpts from “Anatomy of an Epidemic” by Robert Whitaker, copyright 2010

Pg 111
-“Investigators have dubbed this long-term cognitive deterioration tardive-dementia; in 1994, researchers found that three-fourths of medicated schizophrenia patients seventy years and older suffer from a brain pathology associated with Alzheimer’s disease.”

- “….But other researchers conducting MRI studies had found that the shrinkage of the frontal lobes was drug-related, and in a 2008 interview with the New York Times, Andereasen conceded that the ‘More drugs you’ve been given, the more brain tissue you lose. The shrinkage of the frontal lobes may be part of a disease process, which the drugs then exacerbate. ”What exactly do these drugs do?” Andereasen said. “They block basal ganglia activity. The prefrontal cortex doesn’t get the input it needs and is being shut down by drugs. That reduces the psychotic symptoms. It also causes the prefrontal cortex to slowly atrophy.”
Once again, Andereasen’s investigations revealed an iatrogenic process at work. The drugs block dopamine activity in the brain and this leads to brain shrinkage, which in turn correlates with a worsening of negative symptoms and cognitive impairment.”

Pg 115
-“Here is Harrow’s data. In 2007 he published a report on the patients fifteen-year outcomes in the Journal of Nervous and Mental Diseases and he further updated that review in his presentation at the APA’s 2008 meeting. At the end of two years the group not on antipsychotics were doing slightly better on a ‘global assessment scale” than the group on the drugs. Then, over the next thirty months, the collective fates of the two groups began to dramatically diverge. The off-med group began to improve significantly, and by the end of 4.5 years, 39 percent were ‘in recovery’ and more than 60 percent were working. In contrast, outcomes for the medication group worsened during this thirty-month period. As a group, their global functioning declined slightly, and at the 4.5 year mark, only 6 percent were in recovery and few were working. That stark divergence in outcomes remained for the next ten years. At the fifteen year follow up, 40 percent of those off drugs were in recovery, more than half were working and only 28 percent suffered from psychotic symptoms. In contrast only 5 percent of those taking antipsychotics were in recovery and 64 percent were actively psychotic. “I conclude that patients with schizophrenia not on antipsychotic medication for a long period of time have significantly better global functioning than those on antipsychotics,” Harrow told the APA audience.”

-“Indeed, it wasn’t just that there were more recoveries in the unmedicated group. There were also fewer terrible outcomes in this group. ….Ten of the twenty-five patients who stopped taking antipsychotics recovered, eleven had so-so outcomes, and only four (16 percent) had a “uniformly poor outcome.” In contrast only two of the thiry-nine patients who stayed on antipsychotics recovered, eighteen had so-so outcomes, and nineteen (49 percent) fell into the “uniformly poor” camp. Meicated patients had one-eighth the recovery rate of unmedicated patients, and threefold higher rate of faring miserably over the long term.
This is the outcomes picture revealed in an NIMH-funded study, the most up-to-date one we have today. It also provides us with insight into how long it takes for the better outcomes for monmedicated patients, as a group, to become apparent. Although this difference began to show up at the end of two years, it wasn’t until the 4.5 year mark that it become evident that the monmedicated group, as a whole, was dong much better. Furthermore, through his rigorous tracking of patients, Harrow discovered why psychiatrists remain blind to this fact. Those who got off their antipsychotic medications left the system, he said. They stopped going to day programs, they stopped seeing therapists, they stopped telling people they had ever been diagnosed with schizophrenia, and they disappeared into society.”

Pg 118
-“There is no good evidence that antispsychotics improve long-term schizophrenia outcomes……”
- …..evidence that the drugs might worsen long-term outcomes showed up in the very first follow-up study conducted by the NIMH and then it appears again and again over the next fifty years.”

Pg 119
-“…..once researchers came to understand how antipsychotics affected the brain, Chouinard and Jones stepped forward with a biological explanation for why the drugs made patients more vulnerable to psychosis over the long term. They were also able to explain why the drug-induced brain changes made it so risky for people to go off the medications, and thus they revealed why the drug-withdrawal studies misled psychiatrists into believing that the drugs prevented relapse.
-“…tardive dyskinesia studies evidence that the drugs induce global brain dysfunction in a high percentage of patients over the long term.
-“….once a new tool for studying brain structures came along (MRIs) investigators discovered that antipsychotics cause morphological changes in the brain and that these changes are associated with a worsening of both positive and negative symptoms and with cognitive impairment as well…..for the most part, the psychiatric researchers who conducted these studies hoped and expected to find the reverse. They wanted to tell a story of drugs that help schizophrenia patients fare well over the long term, - their bias was in that direction.”

Pg 120
-“In the nonmedication era, my schizophrenic patients did far better than do those in the more modern era, “ said Maryland psychiatrist Ann Silver in an interview. “They chose careers, pursued them, and married. One patient, who had been called the sickest admitted to the adolescent division of her hospital is raising three children and works as a registered nurse. In the later medicated era, none chose a career, although many held various jobs, and none married or even had lasting relationships.”

After reading that my long term prognosis was cognitive deterioration it was like I felt in my heart a "pop" and a bubble burst. That pretty bubble had been my plans for old age. Artists usually get better as they age. As my artist father ages, he is getting better and better. I was looking forward to a golden time of retirement, not when I stopped making art, but when my art was at its most sophisticated, polished, intricate, and powerful. I always thought "the older I am, the better I'll be - damn the arthritis!" Alzheimer's does not run in my family. Neither does cancer (Unless you smoke. My grandfather smoked a lot and died of lung cancer.) On both sides of my genetic tree people live a long time. My parents are both in their seventies and they are dynamos.

I am doing fine, happy with my creative output, happy with my marriage, but very aware that by devoting myself to making art, as I have to a more and more significant degree, I cut myself off from society. In truth, I feel as restricted as when I was locked up on that psychiatric unit for two years way back when as a teenager. My life is very, very simple and this is because I want nothing to interfere with the narrow window of creativity I have every morning.

After reading this book I told my husband that I should try to go off the antipsychotics and see what happens. I was well aware that there was a probability I would relapse, and that I may not get better for years, if ever.

My husband said, "Make a plan." So here is the plan I made.

My Plan So Far

Stop drinking coffee and any beverage that contains caffeine. This will lesson anxiety. Slowly go off Geodone. Continue with MAO Inhibitors. Ween self off Klonopin, eventually to be used only as a drug for crisis intervention. Use the anti-psychotic 2mg dose of trilifon for crisis intervention.

Expected results – I will have problems with suicidal thoughts and anxiety and paranoia and general fragility (with perhaps some psychotic ideation) for at least 6 months to 4.5 years. I should take this amount of time at least before considering that that I am irrevocably addicted to neurolyptics and continue again with an antipsychotic. I anticipate having more energy, more joie de vivre, yet probably I will continue to be a disabled individual with cognitive defects. I don’t expect a reversal of cognitive damage already done, I still consider myself schizophrenic, however, I would like to prevent further damage by further use of antipsychotic medication.

Currently I am as withdrawn from society as I have ever been. No church, no painting classes, no writing classes, no socialization other than with family members and some interaction with other mentally ill persons on-line or in peer support group meetings. My quality of life has slowly deteriorated to a point where I do not see any difference whether or not I am on or off of medication. I live like a hermit – if I am sick or well concerns no one else except my husband. My life revolves around my husband, my dog, and my artwork, and these three elements are all that I care about. If my marriage is threatened or I find I cannot make artwork or I am hospitalized I would advise myself to continue taking antipsychotic medication.

Strategies to stay sane

– use art as therapy as much as possible. Draw and paint any psychotic thoughts or suicidal thoughts. Before go off Geodone stock drawing supplies. I may not be able to drive far when I am relapsing. Draw when I feel anxiety or any other mood or thought disturbance.

-Start seeing my therapist Jim once a week. Switch therapy time so that it does not coincide on the day that evening mental illness community peer support meets. This will cut down on stress.

-Continue seeing Viki and communicate to both her and Jim how I am doing.

- My husband if needed has offered to curtail overtime hours at work to take care of me. Prepare for economical difficulties as his overtime pay is cut. This means living perhaps on a more stringent budget, at least until I have stabilized more to not need his presence.

-Try, if have more energy, to exercise more. A dream of mine is to once again start jogging. I was very happy jogging.

-call a suicide hotline if I feel suicidal. Get the phone number before going off Geodone.

I have met with my therapist and printed out from him both the quotes from the book and my plan of action. He said several things. First of all he definately wanted to see me once a week and that we could bump it up to twice a week if things started going badly. I was not to go off my Geodone until several things had happened in preparation. It might be several weeks for things to fall into place.

He gave me the titles of three books to buy from Amazon and read. In essence, they define madness as a spiritual crisis, one that a therapist can guide the patient through with the power of love and I don't know what. They are very famous books that tend to be pro-therapy and anti-drug. The books are purchased but haven't been delivered yet.

My therapist wants a meeting that my husband attends.

My therapist wants to document everything. I am supposed to journal. Nothing polished, just a journal. I said, you can tape record our sessions, and he said he might do that.

I must agree that if my therapist says "Go back on medication" I will do so. And we both agreed that a hospitalization would be a situation where I would go back on medication.

The hardest part of what I must do to prepare is to have a meeting with my medication nurse and inform her of what is happening. She is very very pro-drugs. But we have always worked in a partnership together - I feel from her a great deal of respect for me personally and ironically, I feel that she pretty much lets me run the show. I chose the drug that I will take. She has a vast knowledge about drugs, so she guides me, but innovative changes in my drug regimen are a shared responsibility.

My therapist asked me if I was prepared to be an eccentric. I said all I ever wanted to be was an artist.

My husband is optimistic. Since its been ten years since I've been off medication, he rather thinks "my brain has healed". I rather think, that because of the antipsychotic medication, "my brain is now drastically chemically imbalanced."

This would be the thesis of the book I just read.

Monday, October 10, 2011

Threat From Above

I've been working on this oil painting for a long time. I'd guess six months. It is titled "Threat From Above" and is 16"x20". The camera doesn't quite capture the vivid color, nor the fact that every single blade of grass is painted in tiny detail. I asked my husband to use one camera to take the picture, he declined for reasons I can't fathom and used an inferior camera. That's marriage, when your partner is going to be bull headed you just throw your hands up in the air and sigh.

At one point in painting this picture I couldn't touch the paint brush. I had given the painting such close scrutiny for so long that it became loathsome to me. I switched over to drawing for a little while in order to let the joy of painting percolate in me and after spending a time apart, come back to me. The lust for painting has finally returned, but with this painting, I have poured over its every detail for so long that I don't know what to think about it. Is it any good? Are the colors bizarre? Yes, the colors are bizarre. I used a strange green and an odd type of red for the shadows in the horse woman and the little people. This gives them more of a hallucinogenic glow than anything that might be close to natural. To say I had no idea how this painting would look like finished is an understatement. It got away from me and became its own thing.