Where are you in “recovering” a life that is meaningful to you?

The biggest loss after I was diagnosed was my poetry. Before my diagnosis, I wrote a lot — I filled a ring binder with it. Two inches of verse, mostly free. Then I stopped because I believed that going to readings and writing it made my condition worse. And I believed that I lost the ability to write it. I did not stop, but my output was meager and sparse. One poem a year. Some years I wrote nothing. But a part of me yearned for the truth and beauty of a fine image. So last spring, I conducted an experiment. Thanks to a psycho-stimulant that gave me a renewed ability to focus, I cautiously began to compose free verse and haiku. To my joy, I did not explode into mania. I was not writing long intense blogs as had been the signature of my mania and I did not lapse into consequent depressions. So I have begun thinking: If I can handle poetry what about spirituality? Could I attend a church without turning into a prophet? Could I handle being a member of a congregation and not its priest? So I have been contemplating where to go, what denomination suits my temperament. That is the next signpost.

Reminded of Algernon

Not sure what triggers so proceed with caution

I have 3 brothers and 2 sisters. I used to have 4 brothers. Pat passed away over 30 years ago. For a long time I didn’t speak about him. Everything upset me too much. I speak some now. But, it is I sad story and I don’t want to discourage people. Different times, different people.

Pat had a breakdown at 20 when he was at college. He came home a different person, first he would just stare. Then he was obviously mentally ill. He claimed he had been brainwashed by a cult,.he was also the soccer player Pele’ and other people. He was unpredictable and scared me. He would try to act ” normal” mimicking others, which was even worse. My father felt Pat could just stop it if he wanted and would yell and even hit him.

my father didn’t believe in mental health treatment and the only help my brother got was when he was picked up on 72 hour holds. They would give him typical antipsychotics, this was the late 70s, and send him home. He would be psychotic and sedated which just made his differences more apparent.

then, in 1985 he was picked up in a different county. They tried a different medication. lithium. Everyone told me he was back like his old self again. It was as close to a miracle as I could imagine. But, when I went to visit he wasn’t well. He was looking at me suspiciously. He was talking about the bible excessively and was hard to understand. My mother said they were having trouble finding the right dosage.of medication.

he took off that night. I never saw him again. He went to Yosemite. He fell at a large waterfall and died. Suicide or risky behavior? I am not sure.

I have all kinds of mixed up feelings. Mainly guilt. That I didn’t try to understand more and be closer and not so afraid, that I didn’t do more to get him some kind of help, that I am fine and he wasn’t.

and just sad that he was fine for a little while and then started to go back into the psychosis he had been trapped in for years.

(About how the title: my children were talking about ” Flowers for Algernon”. I know the story is about intellectual disability, but the idea of improving and then going back to the old state hit me as similar and sparked the memories)

 

How My Condition is Changing Over Time

I haven’t had the problem with side effects that others have had. Except for the weight. The fucking weight. I went to my endocrinologist the other day and learned that my A1C levels had gone down five points. Of course, I over-ate to celebrate, but the maddening thing is that my weight isn’t changing: I continue to hover between 250 and 260 pounds! We have no explanation for this, my doctor and I, but it is noted.

Damn the weight! The blame falls almost entirely on my Risperidone, an antypical anti-psychotic. My mood stabilizers are kind on this point, but my Risperdal has transformed me from a reed shaking in the wind to a baobab — a huge club of a tree that eats up city blocks in Africa. The other night I took a nearly nude selfie. My stomach stood out like a bump on an oak tree. I looked like I was heavily pregnant, ready to drop a cat or a foal. The hair on my belly spread out from my navel like grass on a tiny planet. But I have been rewarded with calmer moods, gentleness, and peace of mind. I’ll find a way to reduce the weight.

Conference of DBSA California, 2016

I have just returned from the conference of the Depression and Bipolar Support Alliance of California. Between keynote addresses and workshops, here are the things I attended (for some, I have notes).

Keynote speaker for Friday morning, stand up comic David Granirer, on “I’m OK But YOU Need Professional Help: Creating Recovery – One Laugh At A Time!” For obvious reasons, I didn’t take notes for this one.

Adult Suicide Prevention Training (presenter Liam Mina, MSW): Liam Mina is a social worker with Didi Hirsch, a Southern California organization founded in 1942, which works on suicide prevention. After the death of Marilyn Monroe, in which they were involved in a “psychological autopsy,” they started getting phone calls, not about Monroe, but from people who themselves wanted help. So they established the first suicide hotline in the US. Now they have 24/7 service in English and Spanish, along with texting and chat for the deaf, and Korean and Vietnamese from 4:30 pm to midnight Pacific time. 90% of suicide is associated with mental illness, but 50% are not in treatment. Responding to warning signs of suicide: Build rapport, assess risk (ask directly, and for people who do say that they are thinking about suicide assess degree of risk by asking about plans and with scaling questions), establish safety (make a plan, connect to resources, ask to repeat back plan).

Ask the Pros: Kent Layton and Himasiri Da Silva. This always popular session allows people to pose questions to a clinical psychologist (Layton) and a psychiatrist (Da Silva). Topics included what to do in a crisis, what to do if you’re allergic to all the meds, what are the effects of different strains of marijuana, the difference between ADHD or ADD and bipolar disorder, whether ketamine is recommended for treatment-resistant depression (and the same question for Lexapro), what about food supplements, and the DSM-V.  A few notes from the answers: Medical marijuana isn’t recommended for bipolar disorder. Useful supplements include fish oil (omega-3) and folic acid (not in place of medication, but alongside it). Da Silva feels that the DSM needs to build in more bioevidence; bipolar disorder had a large genetic component. As time goes on the DSM will become more biologically and evidence based. If you’re in crisis, keep showing up and suiting up, get up even if you can only manage a walk around the block, and don’t give up even if getting your meds right takes trial and error.

Bipolar Disorder: A Family Affair (presenter Angela Paccini): I didn’t take many notes on this one. It focused a lot on family stories, in the interest of showing what knowing roles and triggers and providing support looks like.

Bipolar Disorder – The Future (presented Da Silva): There have been four eras in psychiatry: The Asylum Era, the Psychodynamic Era, the Psychopharmacology Era, and what we are now entering, the Molecular Neurobiology Era. We still draw on what was learned in earlier eras (e.g. psychotherapy, especially CBT and DBT, helps, as do medications developed in the psychopharmacology era), but a new improvement in treatment is our understanding of pharmacokinetics and pharmacodynamics. Medications don’t provide chemicals in the form effective in the brain; first they need to be processed by the liver. Here, pharmacokinetic genes, such as CYP450, are important. The CYP450 system involves 57 enzymes responsible for drug metabolism, primarily in the liver. People can be normal, fast, or slow metabolizers, and a genetic test can show which you are. For example, only 55% of people metabolize Seroquel normally, while others metabolize faster than normal (and therefore see less effect) or slower than normal (and therefore see more side effects). Medication interactions are important (for instance, the estrogen in birth control pills can speed up the breakdown process for Lamictal). So is folate, and some people, with a variant form of the MTHFR gene, lack the ability to metabolize folate and may need, instead, to take methylfolate. Genesight offers genetic testing. Da Silva also talked about evidence based practices governing which medications should be given first (ones for which there are large scale studies supporting efficacy and few side effects).

Saturday morning keynote speaker: Antoinette Brunasso spoke on Coping with Depression and Bipolar Disorder: The Impact on Self and Family. This was a very good talk, at a level easy for a lay person to understand, largely around developing what Brunasso calls a “solid, flexible sense of self,” one that allows you to tolerate anxiety, and avoid reacting to conflict by reflexively caving, avoiding, or locking in your position, but rather work through the conflict toward a solution that works for both partners. How “fusion” can lead a spouse to get stuck in the same place as the bipolar or depressed spouse, and how developing a healthier sense of self can help you work through marital conflicts better even when one of you is also dealing with mental illness.

Reflective Functioning and Mentalization in Relation to Bipolar Disorder (presenter Nazare Magaz): Mentalizing is the capacity to imagine inner states in self and others. It can be affected by your early attachment process, which can lead either to secure attachment or to less secure forms (anxious avoidant, anxious preoccupied, disorganized); if you are a therapist, both knowing your own attachment style and recognizing that of your patient can be useful (don’t crowd someone whose attachment style is anxious avoidant). In bipolar disorder, ability to mentalize drops when you go into episode. Signs of mentalizing: You can imagine multiple states of mind that could lead another person to behave as he or she does. If you can only think of one possibility, you may be falling out of the open, curious state you need to mentalize, and instead in a place of psychic equivalence, where you have a thought about what another person is thinking and then assume it’s true. What do you do when someone else is in a place of psychic equivalence? You need to empathize with that person first. How do you develop mentalizing ability? By being around and learning from people who have it.

Lunchtime keynote speaker: David Miklowitz, on Child and Adolescent Mood Disorders. I didn’t take notes on this one, because having notepaper around a lunch table is awkward, but I did live tweet some of it after I had eaten.

Happiness with music (presenter Mike Sullivan): We played ukeleles. I didn’t take notes.

Trauma Effects – Depression and Bipolar (presenter Christine Monroe): Trauma is always part of psychotherapy. It’s part of life. This talk covered: What is trauma? How does PTSD compare to bipolar disorder (e.g. flashbacks to traumatic event compared to depressive ruminating)? What events can lead to PTSD? What puts people at risk? References: Ross Rosenberg on trauma levels. Dan Siegel on parenting. Evidence based treatments: Trauma focused CBT, exposure therapy (start mild), relational therapy, and, a particularly good therapy for PTSD, EMDR.

And that was my last workshop. I condensed my notes a lot for this post, so I may, if I find time, have a longer post on one or another of the individual sessions.

 

 

No matter how beautiful your strategy …

Today was the day of the Meeting of the Minds, the largest mental health conference in Orange County, California. It is an annual conference sponsored by the Mental Health Association, for patients and family (“consumers”), clinicians, and first responders.

This year, we had a table. We arrived at 7am and set up. We were quickly flooded with people making the rounds (memo for next year: bring more literature). By the time of the first session, another member of our chapter had showed up. I went to the session while Joel stayed at the table, just for the first session, he said, but when I got back just before lunch, it turned out that he and the other member had been busy at the table the whole time. I took the table after lunch so they could go to their favorite sessions.

Here is what the talks were like (the ones that I attended).

First session: I went to a panel discussion on Recovery, with the panel coming from a local Wellness Center. The session unfortunately started late, as some people were held up by unexpected traffic, but we did get to hear all four speakers. The first two speakers had suffered horrific child abuse, and then grown up to struggle with mental illness. The second two had come from more supportive families, but faced other troubles and, again, mental illness. But whatever their different paths, a common theme was that recovery involved (besides meds) the support of others, and then giving back that support to others in turn. Some quotes from the last speaker, just for an example:

Instead of praying every day to God for my health, I prayed for my death. What turned it around was NAMI…. I could believe in people the way that people believed in me…. four years sober … believe in people who have mental illness.

Second session: Two psychiatrists from the John Henry Foundation spoke about “Schizophrenia: Cognitive Testing to Enhance Diagnostic and Treatment Options.” “An ab workout for your brain.” Schizophrenia involves positive systems (delusions and hallucinations), and negative symptoms (flat affect and poverty of thought), but also problems in cognition: processing of information, flexible thinking, and memory. There are medications for positive symptoms, and even some medications for negative symptoms, for for cognitive deficits, the speakers said, you need something else. The John Henry Foundation uses cognitive testing to evaluate people’s abilities in seven domains: Processing Speed, Attention, Working Memory, Verbal Learning, Visual Learning, Problem Solving, and Social Cognition. Once your weak areas are identified, you can build them through simple cognitive exercises, done daily. We got taken through some games that tested us in each area. (I appear to be way better at processing speed and working memory than at visual memory.) These exercises can be useful not just for people with schizophrenia but for anyone. Even neurotypical people can use them to build their weak areas, and people with other DSM diagnoses, such as ADD or borderline personality disorder, can use them (for example, exercises that help with attention for people with ADD, and meditation or exercises that help with emotional gating for people with borderline personality disorder).

As I didn’t go to the afternoon session, the final talk I heard was the keynote address right after lunch, “Dream with your Eyes Open,” by Eric Arauz, who went from the childhood trauma of seeing his family unravel when his father became mentally ill, to repeating his father’s mental illness, to, unlike his father, finding his way to recovery. Now he is the president of the Trauma Institute of New Jersey, and also an impressive public speaker, going by his keynote address. I got a copy of his book for our chapter, which I’ll read and hope to review later. My title comes from a line in his talk that struck me: “No matter how beautiful your strategy, you have to eventually look at the outcomes.” For Arauz, that outcome involved moving from what he calls a “Chaos Narrative: No Map or Destination” to one that rewrote his story in a more positive way.

 

World Bipolar Day

Today is March 30. It was Van Gogh’s birthday. It is also world bipolar day. A day to bring awareness to decrease stigma and not feel alone.

I haven’t done much this year. I tweeted on the hashtag #worldbipolarday a picture of me I have used in the past, with a list of other things about me than my diagnosis.

I am facilitating a DBSA group today. It seems appropriate.

Crossing Zones

Travel is one of the greatest dangers facing someone with bipolar disorder. The majority of medical evacuations from overseas happen when someone enters a manic or a psychotic state. I am no stranger to these issues: I have noticed that when I cross the country to attend DBSA conventions, the combination of the excitement of the convention and the messing up of my sleep cycles — especially when I am compelled to wake up earlier — often conspire to pushing me into a slightly manic and obnoxious state.

So when we made plans to visit my brother-in-law in Senegal, I took the time to confer with all my doctors but especially my GP and my psychiatrist. In addition to the necessary shots such as typhoid and yellow fever, we bought medical evacuation insurance for me. I also discussed my plans at length with my psychiatrist, particularly since I would find myself not merely in one different timezone, but four — Salt Lake City, Paris, London, and Dakar. Together, we hatched out a plan which involved my taking an extra tablet of carbamazepine while I was gone. Two days before my departure, I began taking the increased dose — two first thing in the morning, one with dinner, and one at bedtime.

Not even the hint of mania afflicted me. I kept my temper, didn’t laugh too much, kept my bearings, and didn’t engage in compulsive spending. We stuck to our plan in London and Paris, not doing too much in a day and always discussing our expenses as we went along.

When I came back, I felt so good on the new dose — who in their right mind misses the rages? — I asked my psychiatrist if I could stay at that dose. She let me under the condition that my drug and white blood cell levels were closely monitored at least in the beginning to be sure that they didn’t destabilize me. Four months after my trip, I continue to do well.

If you live with bipolar disorder, you can learn this from my trip. First, talk to your psychiatrist and consider raising your dosages of your mood stabilizer. Second, take pains to adjust your sleeping schedule. For two weeks before I left, I starting setting my going to bed time an hour ahead of when I usually woke until I was getting up at Paris time, about mid-afternoon. When I arrived at Orly, I felt fine. When we arrived in London that evening, I went right to sleep and woke up shortly after dawn. I wore a sleep mask and ear plugs to minimize disturbances. I used an alarm clock to wake myself and it worked. I jumped out of bed and I enjoyed each day. My regimen kept my mind stable. My sanity never wobbled.

Cards

I was going through some things, and I found a card from a friend. It was a nice home made card. I don’t remember when she gave it to me.

It got me thinking of my most memorable card. I can’t find it. Probably threw it out. I wanted to forget that time.

When I had babies people were able to visit at pretty reasonable hours. They brought balloons, cards, flowers.

When I was in the psychiatric ward, it was totally different. Restricted visiting hours and limited visitors. No flowers or cards.

They did have different groups and activities where I stayed. I was in an art class and they had us make cards. I made a get well card for myself.

Lori,

I hope you feel better soon

From,

Me

With a design on front

What could go wrong?

FDA asked to consider adherence sensor on Abilify

http://www.modernhealthcare.com/article/20150910/NEWS/150919997

http://www.proteus.com/press-releases/u-s-fda-accepts-first-digital-medicine-new-drug-application-for-otsuka-and-proteus-digital-health/

Proteus Health, located in Redwood City CA, along with Tokyo based Otsuka Pharmaceutical Co. have a new drug application that is ready for review by regulators determined by the FDA.

The new drug is embedded with an ingestible sensor. When the medication, and sensor, reach the stomach, it sends a signal to a patch the patient wears externally. The information can be sent to physicians or caregivers with consent.

The sensor has previously been approved in a placebo taken along with a medication.

The goal is to help with medication compliance. All well and good up to this point. But, what is the first drug they choose? Abilify, an atypical anti-psychotic. It isn’t always taken for psychosis. It can be used as an add-on for depression and other ways. But, it is also used to treat psychosis.

Some, not uncommon, delusions are that:

you have sensors embedded, that your medicine has been poisoned or tampered with or that people are tracking you. This is to be taken by consent, but personally, I think they chose a bad medication.

I don’t know what is wrong with injectable abilify? That would be my choice.

 

Low-Grade Depression?

I have been trying to discern if I have been in a low grade depression or not. It can be tough to recognize these borderlands. The signs can be subtle. While I do not have negative thoughts coming at me and trying to carry me off on the backs of lemmings flooding over a cliff, I have found it harder to complete tasks and sleep less than 11 hours a day. If I am not in a depression, I am very near one, I think.

Two things in particular seem to be helping at this point. The first is my Vyvanse. The second is exercise. Vyvanse is known for raising people out of funks. Exercise is a remedy that I have used for a long time. But it only helps when I am gasping at the surface of that great ocean of drowning. So if I am down, it is not very far.