Inside My Bipolar Week

At the beginning of this month I vowed to change my life, starting with working harder on my mind. Is it working? Maybe. I am keeping on with it. That's what I can say. Waking up is so hard to do, from one standpoint. Easy from another: All you have to do is follow own breath in...out...rest.  For even the few seconds of one complete breath you are turning away from your itches and wallows and, as the Buddha said, "when you forget yourself, you are free." Unfortunately, it isn't as easy as one breath; if it were, everyone would be enlightened.

In the mess of my last five years of sick and sicker, I thought the first thing to get in place was my practice. I have been reliably doing my morning practice for some time now, and added an evening sit with Tom. He and I are each in a conflagration of problems with difficult people in our lives, and meditating together helps us get to the evening practice. Part of what you are practice when you sit zazen is putting your gnawing problems aside. The problems are still in motion, reality is gnawing at everyone involved and changing them, and you get off the carousel for awhile.

My biggest problem this past year has been my mood swings.  They have been dramatic, and the psychiatrist washed his hands of me, afraid to try any other chemicals.  So I've been trying to get a handle on them myself.  Recently I was looking at TCM and hypothesized that I might be expending a lot of energy/dopamine on a good day, talkinglaughingcookingmakingartgeneratingideas, so that the next day I am naturally exhausted (from the Latin, emptied out, drained).  So I set out to curb my enthusiasms, to move more quietly through  high-energy days. Impulse control. This was hard the first day, but is getting easier with practice.  Sitting still and poised, no matter how you feel, is central to zazen, and maybe to equanimity.

Yesterday seemed to be somewhat better, as bad days go. I didn't cry or carry on angrily at anyone. I got a couple of important practical things done by following my day's to-do list strictly in priority.  I still went semi-comatose around 4:00 pm, despite an infusion of energy from a visit from Chris, and a few minutes enjoying the garden with her. I was sad that I can't work in the gardens myself anymore, but happy to have her help getting the peonies under control.

I talked too much visiting with Chris. I keep doing that. Right speech-and-listening is a lifetime project. In fact, it's singled out on the Eightfold Path.

Chris is a kind person, and tolerated me well. We couldn't hug because she was covered in allergens. That's another thing I accomplished yesterday; I made an appointment with a local acupuncturist my grandson found for me, who has special training in allergy.

There's much more to a week, of course, but I'll close with touching down on my sleep and lack of it. Last night I felt clammy and discouraged, and couldn't fall asleep until after midnight.  Then I awoke at the traditional time for insomniacs, 3:00 am.  However, I remembered the intention I set before I went to bed, to light some incense and meditate if that happened, and I did.

Meditating by candlelight in a dark house in the middle of the night is pleasant, quiet and easy. It is not yet full Pink Moon, but getting closer. The moon is always full, of course. "Full moon" means only that we can see it all from where we stand.

Pink Moon phlox

I Really Am Bipolar

I have been officially bipolar since 1978, when I was correctly diagnosed after three years of hell.  First they got me settled down with lithium and stellazine, and I don't know what else; then someone confirmed the diagnosis; you are bipolar when your condition stabilizes on lithium.  I was so relieved that I immediately accepted the diagnosis.  From there on I let psychiatrists push psychotropics on me to such a degree that I lived like a sane person, got jobs, got into a good marriage, went to grad school and got a PhD, and realized that being a college professor was not a dream, but a nightmare.  My life felt tinted gray, but they weren't the worst years of my life.

But I digress.  That's one feature of hypermania.

Still, after all these years I don't think I quite realized what it meant to be stuck with bipolar.  This truth has been forcing its way in since that meeting last Tuesday in which the shrink he said he couldn't do a thing for me.  At the moment, I am sleeping okay.  The moodswings are another story.  The regular cycling of up/down days that Seroquel had damped has returned.

Meanwhile, life goes on.  On the heels of Tom's last fall, we are in the process of figuring out when and how to move to the retirement home we like.  At first we thought I would go there into a one-bedroom, where I might have a stress-free life while Tom stayed in the house and got some things done (and didn't fall down again).  But our financial counselor nixed that - just too expensive month by month.  By that time, though, I had chosen the colors for my beautiful little one bedroom.  (They paint for you.)  And just last week I got to see them on the walls.  Here is the living room -

 I chose those colors from a favorite still life with apples.  The windowsill is not purple, but brown, and the coral is really that bright.  It seems much brighter than it did on an apple and a little paint sample.  The yellow is pretty yellow, too.  I wanted the living room to be warm and stimulating. 

Above is a view of the living room from the bedroom.  Fortunately, I was inspired to choose the bedroom colors by a serene mountain scene.  That's a kind of French blue, not too vibrant, and the window wall is the faintest blush pink.  Actually, this room is a little bright too, in daylight, but feels overall serene and pretty.

The bathroom turned out perfect though.  The aqua is well-represented in the photo to the right.  I might go for that in the next place.

Here's my point:  When the admissions officer opened the door to that warm, really warm coral and yellow, I thought, "You can tell these colors were ordered by a manic."  It was one of those small experiences that keep coming along; some people call that gradual enlightenment.

As realizations do, that truth has been soaking in.  When I feel real good, confident, joyful, that can be hypermania.  It can lead to poor decisions.  I have been revisiting memories of extravagant purchases, of spontaneous travel.  And from the depressed side I remember raising my voice at someone who was just trying to help, and saying too much in another situation.  These things are called "inappropriate behavior" in the psych wards.

 I really am bipolar.

I really am stuck with this self and its chemical swings. Whether bipolar is a disorder or a chronic illness it's hard to live with.  And I think it's true, there's no mood-stabilizer I can take.  So I need to take seriously the problem of life style, how to live well enough on up days and down days.  Getting through hypermania has challenges, but is somehow more manageable than depression.  And a depression is probably coming tomorrow.  We'll see. Sun-faced Buddha, moon-faced Buddha.

Stuck With It

My husband Tom had polio the year before the vaccine came out, and it changed his body in a number of ways, most seriously, diminished respiratory capacity.  Many surgeries were done on his hands and feet that allowed him to function well in the world, and to work.  But there is no getting around some of it, nerve damage, for instance, and he does not imagine that it will ever be possible to escape or control that; it's his body, and he's pretty content in this world.

It's hard for me to imagine being as accepting as he is, since I keep building fantasies of escaping from or controlling this bipolar disorder.  A new study of DNA comes out and I think, That's it.  This is going to lead to a cure for bipolar.  In my lifetime.  This disorder broke out to stay in my early thirties, so I've been dealing with these hopes and dreams for over three decades.  I modify them at times.  There has to be a way to medicate this that would leave me perfectly normal, without moodswings.  I mean, that could happen.

So this morning when I was reading an article by Bernie Glassman, I was struck by his words.  First, a photo to suggest one reason I like Roshi Glassman.  He clowns around, lest students take themselves too seriously. (That student is Jeff Bridges, BTW.)

And here's another photo of him leading a street retreat, a plunge into living homeless.

This is quite a person and teacher. 

In the article he says -

All of us have some degree of realization and, moment after moment, are manifesting our understanding of the oneness of life. Obviously, the greater the realization, the greater the clarity, the greater the confidence.
      And with all that, even while possessing great realization, we still have our conditioning, our own particular characteristics, our own particular paths. Little of that changes overnight. In fact, there is a great deal that remains unchanged throughout one's lifetime. We acquire from a very early age strong patterns of behavior; we have physical characteristics that we and others sometimes call limitations; we have traits embedded in our DNA that we are powerless to change in this lifetime. It is like drinking from a glass and then washing it of all trace. The washing itself leaves traces. So we wash some more, try different ways of cleaning and drying, yet no matter what we do, some trace is always left......

So you can see why that speaks to me, with my inherited mental condition.  Because if I'm not careful, I get into thinking I can beat this thing, that there is a perfect point between overmedicated and undermedicated that I could sustain day after day and be, you know, normal.  This is a 70-year-old woman who has yet to perfect the art of picking up after herself.  (I work on it, though.........)

Living With a Chemical Imbalance

When I woke up this morning, I knew this was a good day.  Actually, that's the schedule lately, good day, bad day, like clockwork.  Very strange, but then the bipolar mind is different than boring old sanity. As I was being glad I felt good, the koan came in, the one I've been carrying around for about thirty years.  I've written about it before.

If you do not say good
and you do not say not-good
then what is the nature of reality?

That got me thinking how I could describe these days without the evaluative terms good and bad. 

one type of day is -
high-energy in all chakras - it's remarkable
active,
interested in ideas
tend to talk and write a lot
very creative
motivated to do things,
enjoy art and beauty,
filled with loving impulses -
and I like that kind of day.  Who wouldn't?

the other type is -
low-energy all around
passive,
quiet,
uninterested,
unmotivated,
struggle to just do essential things
vaguely dissatisfied with everything, little feeling
tendency to sad, morbid thoughts - 
A mood too many people are familiar with, and no one I know likes it.

Like/don't like is about preference.  You may say everybody would prefer that high-energy day, and that wouldn't surprise me.  Still, the day is not intrinsically good or bad.  Those words are assessments.

If you just describe these moods, they are primarily different energy states.  There are roughly three approaches to any mood or condition:
.  just experience it
.  try to change it
.  try to escape it
I almost left out approach #4
.  grouse and whine.

Changing the state - You learn to do that when you feel too high. Sit down, shut up, breathe. Meditation is obviously good practice for this. And a bipolar needs to do it or come across like a Labrador Retriever puppy.  Changing the low state is harder, and often I just try to escape/endure.  Now that I think of it, there are ways to work with your own energy.  I studied kundalini with an excellent teacher once (Hi, Kit), and I know there are yoga poses that build energy.  I've also done some chi gung. There's a course in that at our local rec center, and I'm planning to sign up for that.

But what about the "just experiencing" part?  That sounds very Zen. Yet - who wouldn't want to pull the thorn out of your paw?  Enduring a mood is easy to do when it's high-energy full of dopamine and serotonin; I lose myself in whatever I'm doing.  Experiencing the low-energy state - not. I'm really fond of escaping it when I can find fiction to read or a movie.  This kind of chemically-based condition doesn't seem to benefit from self-examination and self-talk the way situational depression can.  And that's all I know.  Your thoughts are welcome.

Not dead yet

Update on personal body and soul -

Yesterday went to my PCP (primary care provider, as we now call family doctors) because a sharp recurring pain in my stomach was frightening me.  This doctor actually knows me, (despite every effort of the medical and insurance professions to make medicine impersonal), so he ordered a urine sample before he even talked to me.  And there it was again, a hidden bladder/kidney infection.  This one was not signalling itself with incontinence.  So I started on Macrobid again last night, and this morning on omeprazel for the stomach.  The shingles are acting like they should, crusting over, and they itch something terrible now, and if I sweat it makes them sting.  We discussed my pain medication.  I haven't been taking enough. 

As for my soul, I immediately felt relieved - the deep depression of this last week is not necessarily bipolar rising up again.  And in fact, the terrible depression in early September was simultaneous with a UTI.  Regular people who don't have mood disorders get depressed with these hidden infections, but a lot of them think they're just old and ready to die; and younger people can keep bulling their way through what they think they have to do, ignoring or drowning their bleakness or blaming it on their spouse.  But if you need any proof that we are one unit, and there is not one part of us separate from the others (like mind separate from bladder, say), this is it, living proof.

I've been so tired this week that I had to miss things that brighten my life - going to choir, coffee with a friend, having Otto over for the afternoon.  So tired that twice I forgot to take off the elastic sleeve I wear for lymphedema, and slept in it - dangerous for the skin.  In my usual I'll Conquer This attitude, I wrote a checklist and posted it in my bathroom,  so I remember to do the things I have to do at bedtime.  That's how tired I was, and waking up still tired.  But this morning I woke up to find I'd slept 11 hours, and my first real thought/sensation was that I didn't feel as bad, and my second was gratitude.

You know, you are not even in charge of your own will to live.  Today the sun is out here in southern Ohio, and every time I look out the window at the blue sky and take a breath, it feels healing.  I had a cupcake for breakfast and played Words with my grandson, whom I love more than my own life by far.  Now that I'm pulling out of that depression I can feel love again.  Even love is a matter of your health and the mix and flow of chemicals in your brain.

Now, that's all for now.  As for what I do in this blog, I just try to share my life, the reality. As for the image above, is God behind the clouds?  In the clouds?  Is God the sun and clouds, and the photographer?

Do atheists exist?

The TED talks are as good a place to begin your study of humankind as any - all these highly motivated people!  Motivated to do what?  Anything from cure blindness in Africa to swim a specific body of water at age 60.  The first you can certainly understand as a purpose in life, though it's going to run you into grave problems of overpopulation and famine.  The second, well, maybe you can see the point, but I can't.  I just never got into Amazing Feats of the Body.  Yet I've seen a world enthralled by a similarly ridiculous contest of minds, chess between a snotty kid named Bobby Fischer and the world champion, Boris Spassky.  This was decades before the personal computer could beat us all at anything.  You wouldn't believe how interested we all were in this, because it had something symbolic to do with the Cold War.  That doesn't exist now, either.  You could say it never did, just an idea.  Poor Bobby - his Wikipedia entry includes a section called "Sudden Obscurity."  No kidding.

Inflicted as I am with shingles (painful) and depression (worse) - and who knows whether they're related or just different neurons colliding in the mix - I found myself watching a TED talk by someone on whether I exist.  I won't name him or post it, because I've found it a bad policy in life for a little tiny bug to make an implacable enemy of a powerful person.  But really . . . it was a tasteless porridge of Buddhism for Toddlers and modern science.  
But this guy got himself a PhD in philosophy and went on to make a career out of talking about this kind of thing and writing books about the rock-bottom-dumb questions of (Western) philosophy, which must surely be as dead as chess by (snail-) mail.  

In that, a nerd sent another nerd a move on a postcard.  A penny postcard.  Nerd2 thought about it and made his move and sent a postcard.  Try to imagine a world that slow.  That was a world in which long distance calls cost a lot of money, and were only made in the event of a death.  But you knew you existed and so did everything else, and it never changed.  Every Sunday night Dinah Shore came out in what seemed to be the same prom dress and sang "See the USA in your Chevrolet . . . " and blew a kiss.  She does not exist anymore, but are you telling me she didn't?  I saw her. 


You, however.  No, according to this TED talk, you don't exist.  I mean, what made you think you did?  The fact that every night of your life you confront the same stubborn stupid oily skin?  Your exact  cowlick?  The food trap between the  molars on your lower left?

No, you're just a bunch of relationships, the way water is just a couple of hydrogen atoms mingling with an oxygen.  So if you thought there was Evian and Yellowstone and the Baltic Sea, there was rain and ice cubes, think again. 


There are opposing theories about existence, such as the belief that we are all ideas in the mind of God.  I rather like that, but if I were an atheist, it would make me nervous.

Control or Undo?

Decisions, decisions

This evening, after a lovely day with Tom's family, I find myself a hot smoking gun in writing comments and e-mails.  So I will reproduce two items below that I don't feel like developing any further.  As far as criticizing Oprah, it takes a brave or hopeless writer.  I believe I am both.
 ~~~~~~~~~~
Why I feel Oprah is a seriously bad influence on women:
1. She is airbrushed on the cover. To say nothing of professional hair, makeup, and all that Spanx.  Nobody actually looks like that, ever.
2. She tells us we can do Anything if we only fabricate outlandish goals and continually pump up our craving to achieve them. This is bullshit. It makes women cheer when they are in the studio audience, but the next day it can only make you very very depressed. Because you can't.  Do Anything.  Everyone is limited in many ways by many factors.  I mean, come on, I can hardly do anything, let alone Anything.  And I've tried.
~~~~~~~~~~~
Hi ----- to all who are contemplating kidney transplant -
In the 14 months since my transplant (live donor) I have had 15 bladder infections, and no. 16 showed up today the way they do, with major urge incontinence.  So charming.  They bring depression and apathy with them, and the antibiotics upset my digestive system, so I have to force-feed yogurt and acidopholus pills and carry various stomach medications.  I am having serious pain problems with degeneration in my spine, perhaps avascular necrosis caused by the huge doses of steroids at the time of the surgery.  I am limping, that's a hip, and recovering very slowly from a broken arm. The steroids caused me to start having exaggerated moodswings that require medication, and it took six months or more of trial and error to solve the insomnia they brought on.  Everyone tells me I look great (for 69).  Wow, reborn.  I have not had any rejection problems.  There are people in my family who are glad I'm still around, I guess.  :)  Otherwise, I have not earned the transplant or paid the universe back.  The main thing I have gained is that I am no longer afraid of dying.

I don't know whether I would do it again if I had foreseen all this, but I think that's not a very good question.  We don't get to undo our decisions.  Or control the outcome. Don't even think it.

Pissed-off Buddha

Well, this was weird - I don't know what key I might have hit, but it erased the paragraph I had written.  I'm not even more pissed off about it - just kind of interested how awful the hours of fire are in the month of Thunder Moon (which just passed full).

I had started to more or less apologize for the vulgarism, but explain that "pissed off" identifies exactly the mood I am in.  I am mentioning this in an educational way.  I like to alert people to how much we are affected by this weather.  I'll just bypass the unease we all have about the many weather disasters happening, the big drought in the southwest US, the fires, the heat waves. We have the feeling we don't know what's about to happen, which is exactly right.

August is a horrid month for many sensitive people, worse than February, and this year July is acting like August, except for the harvests, which are being killed off by the heat and drought.  Of course I'm talking US here, and I know some readers are not in our latitude, is it? Not in our climate. Hello Great Britain - you have your own problems now, but a marvelous scandal to take your mind off them (Goodbye, Rupert Murdoch).  August is high summer, which means the yang that brings summer in is decaying.  This is awful. Add to that the truth of the ancient medical theories that the hours of the day are ruled by different organs and elements in succession. What that means here is that roughly 10 a.m. to 2 p.m. are The Hours of Fire. (I wish I had a really wild font for that.)

Fire is an apt description for the high energy, the anger and restlessness and pain this can bring to us. Maybe not you. If you're an earth or water person, you may feel more energized, brighter, maybe you benefit from some fire.  But I am a Vata-Pitta (Ayurvedic system), air-fire.  Mostly Vata, the thin-boned artistic type, which is easily unbalanced and inflamed by getting too "hot."  Yow.

The truth of this came home to me half an hour ago as I sat in the cool dim (which I cultivate) at  my dining room table doing my weekly pills.  This is about a one-hour job demanding concentration.  It always generates tasks like seeing a doctor or getting a refill or updating the med list.  I did not have a bad attitude about it when I began.  But then I noticed I was mad at someone who was not in the room.  You know what I mean.  Then at something that might happen. What had happened to my quiet, pleasant mood?  What time is it? I asked.  Ten-thirty, Tom said.  I knew it!  Fire rising.

I just feel that part of my task in life is to elevate Westerner's awareness of the energies all around us.  We are deeply conditioned to believe we are individuals who determine our own destiny and attitude.  Well, what nonsense. We are connected profoundly to other energies of many kinds. You know this.  You've been places that felt all wrong.  If you were the scapegoat in an alcoholic family, you may have noticed that you felt depressed around the group, as if subtly you were being beaten - and you were, by their mental energies.  (Why would the electric storm of the brain stop at your skin?) If you've done spiritual practice, and maybe if you haven't, you've been around people you feel good around, people you might say have a nice presence. And then there's more interesting psychic experiences, which almost everyone has had at some time.

So, beware of high summer and especially the hours of fire.  They appear again at 10 pm to peak at midnight. Alcohol intensifies fire, no matter if it's in a frozen drink or not. Bright lights, loud music, a bunch of fired-up people - these things make it more and more.  I know some people seek that out.  Pay money to be in exciting fiery places.  I know.  I just hope they're not my grandson.

Meanwhile, if you want to stay cooler, avoid spicy foods and midday sun.  Keep your blinds drawn. Wear your blue sunglasses.  Be cool.
[The photo is me wearing mine. It was taken several years ago. I have a better haircut now.]
~~~~~
 
p.s.  Hello, Emma and Lola. Every person that joins this site encourages me to keep on being crazy honest.

Bipolar, Borderline, Enlightened

This morning my study feels more like a sanctuary than usual. It is dim and threatening rain, a relief after days of bright heat. I had eight hours of healing sleep. There is nothing on our agenda for the whole long weekend but to relax. Our grandson, and his vital energy, are gone. Tashi is relieved - cats are instinctively wary of change. I'm getting there myself.

I want to write somehow about being labeled.

Last night we watched Crazy Wisdom, a wonderful film about the life of Chogyam Trungpa, who brought Tibetan Buddhism to the West. I first knew him as the teacher of Pema Chodron, whom I have never met, but whose books and tapes taught me how to meditate.  Recently my aversion to Trungpa's famous drunkenness and sexual behavior melted away - thank God, my standards are eroding - and I have been studying his talks on my Kindle.  So here came this film, through the Tricycle film festival.

Every psychiatrist I've ever known would feel satisfied that Trungpa Rinpoche was Bipolar and Borderline. You could make that Bipolar with schizoaffective overtones, as he had visions, one famous one in the cave of an ancient Buddhist saint. Add to that Dual Diagnosis - his drinking was legendary.

It is not news to me that the very manifestations that are called Bipolar can be seen in religious terms. I once owned a book called Are you Getting Enlightened or Losing Your Mind?  In the mid-1970's my own behavior during periods of extreme emotions/sensations was labeled "manic," but if I'd been in a knowledgeable Buddhist community it might have been recognized as the heart chakra opening, as an enlightenment experience.  Labels are strictly cultural.  Words have no intrinsic truth.

A wise Buddhist teacher might have had me eat beef, which is grounding, and kept me in dim, quiet rooms, with advanced students being with me, encouraging me to sit silent, to fall asleep, helping me come down.  Other behavior/feelings that hit later would have been labeled not depression, but despair, a spiritual condition long recognized in the Christian tradition, and prominent in Jesus's story. I would been encouraged to keep doing my daily work, to get outside and contemplate nature, to do physical forms like walking meditation, yoga, or tai chi, to sit with my feelings and recognize how they modulate and pass moment by moment. But I didn't have a religious tradition to help me.

People who are caught by the American mental health system can resist being labeled, or be grateful and hopeful that it will help. In the absence of a good community approach to extreme behavior, medications can help. Equally, they harm. Lithium cost me my kidneys. You don't know what trouble is until your kidneys start failing.  I'm sorry that a good residential training program did not exist, and sorry that very few such programs exist now.

Here is the Buddhist understanding of extreme emotions: you never "are" some thing.  You are a dance or a traffic jam, a bunch of processes that are active as long as your body is alive.  What you call "me" changes all the time.  Labels are a convenience, but we need to understand they are not reality.

Here and there are other people like me, for whom religiosity is deep experience, not "symptom". Many other people who have gone through extreme experiences and have learned how to work with their feelings, thoughts, sensations. Who use little or no medication. Who are happy and useful. I am convinced that more of us need to come forth and be willing to be labeled crazy, who know that the truth is, we have crazy wisdom.  Some frightened people will avoid us, some sick people will enjoy gossiping and feeling superior. That's life. You can't help what other people think.

Those of us who have found paths that work need to share our own experience, not the long drama of being sick and disrupted, but the important story of how we let that pass and learned to be happy.

Our Zen garden from kitchen window

Against Positive Thinking, Again

Well, February almost over.  I had ideas to blog about today between about 10 and 11, now mostly gone.

Danger everywhere was one of them.  I am now doing mask and gloves when I scrape the litterbox, worry about touching own face or food after touching the little cat, which I do a lot.  It seems astonishing to say this animal is worth the risk to me.  But a facebook friend, Rusty, writes that his mother died of a virus you catch from a litterbox.  I recall New Year’s Eve saying, I don’t even want to live feeling like this, then going to Cat Welfare.  I so much mourned Sheba, the loss of an animal in the house.  Many tx patients feel like this, and do have pets.

I am discouraged with yet another UTI bad enough to require hospitalization, and a dangerous IV in my arm leading to my heart.  Taking a shower is a big risk, means wrapping arm very carefully in plastic wrap and silk tape.  It never stops, and it’s all making me feel hopeless, like why do I bother?  start looking - there is danger everywhere, everywhere.  A wooden-handled knife, are bacteria hiding in that wood?  Leftover cooked chicken in the frig could have listeria, you can get a horrible stomach infection.  No church food of course, no potlucks or buffets, you are taking your life in your hands to eat chili from Wendy’s which is at least governed by some sanitation laws.

A friend shares my discouragement - I do so many things to be healthy, she says, and she does, yet this.  Add to this in my case a badly damaged relationship with my tx surgeon, contradictory orders, and worst of all, his nurse (I assume he ordered her) throwing a tantrum at me because my PCP put me in the hospital where he has privileges.  She was probably just repeating the tantrum he threw at her.  I am waiting to hear about being assigned to someone else.  Yet, as Tom comments, sometimes the devil you know is better than the devil you don’t know.  Yes, you are stepping into unfamiliarity.  I have low expectations now.  By and large, doctors I have met over the years in teaching hospitals are unbearably arrogant, given to telling you what they are going to do without explanation of the options, and to hell with the common knowledge that patients do best when they feel in charge of their care. 

Cellphone alarm.  Now what?  Time for noon pills.  Rapamune.  Siroliumus, that is.  One after another these meds make me feel sick.  Nose bleed, upset stomach, headache, just plain disgusted with the medical profession.  It’s one thing to be sick and old and die, another thing when someone has promised you a new life and you get one infection after another (because of the immunosuppressants) and never a week off to feel good.

And this moodiness caused by who knows what - big weather keeps coming thru, I have fibromyalgia, which can cause depression among many other things.  Not helped by the conflict with Dr. God touching on my ancient beginningless issues around an abusive father not acting like a father should.  Well, of course, your ideas and expectations get you in trouble.

Good mood, bad mood - who the hell am I?  One day I love this new book of poetry I got by Tony Hoagland.  The next day it is boring.  I am bored by pretty much everything.  Okay, opportunity for a major Buddhist insight: Wun is constantly changing, influenced by everything, many of those things invisible to our stupid blinkered western eyes.  Hang on, this too will pass.

And you feel what you feel.  I've been arguing on facebook against "positive thinking," which is a synonym for what?  Optimism, which is often unfounded.  You hope, you get disappointed.  Just experience without judgment.  I told my friend Bob Parks, "Positive thinking is against my religion."  He is a minister widely read in various religions, and told me how he gently encourages people who are very ill to be with their experience.  He knew exactly what I was talking about.  So often that's all you need to comfort you a little, which is all anyone can do.

Working the life koan

This came to my facebook yesterday from the Dalai Lama: 

The more you think about your own self, the more self-centered you are, the more trouble even small problems can create in your mind. The stronger your sense of ‘I’, the narrower the scope of your thinking becomes; then even small obstacles become unbearable. On the other hand, if you concern yourself mainly with others, the broader your thinking becomes, and life’s inevitable difficulties disturb you less.

I wish I'd read it then - dealing with an exhausting day of medical appointments, mine and Tom's, grocery shopping, driving, and then getting home to find a letter from Huntington saying I had been overdrawn by $15 for seven days and they were charging me $23 for the first day and $7 every day after that.  This was my first notice except for a message in a little box online.  I don't read these messages every day, I bet no one does.They have always been general and didn't apply to me.

Interestingly, the letter was dated Feb. 4, mailed pre-sorted first class, mailed from Columbus, and took five (5) days to get here.  Do you believe that?  I think something's wrong.  The kindest assumption is that it's human error.  But do you know, some years ago another bank did the same thing to me.  (They relented when we discussed it.) Ordinary mail gets here much quicker than that, usually in one day.

So today I intend to go out in this awful cold and explain to them why I don't think I should pay all these fees, for one is supposed to have a 24-hour grace period with overdrafts - but that only works if you know about it. See what we can work out.  Pay what they want, or refuse to.  Then go and start a new checking account at Kemba, where we have our mortgage.  They are a nonprofit, and what a difference in attitude!  Then close the Huntington account.

My first impulse was, I hate these people.  But on examination, the feeling was not anger, but frustration. I'd like my life to be simpler, not more complicated. Ironically, the cause of the overdraft was a holiday gift to the church.  Told them they could withdraw it electronically, as they do my regular pledge, and then forgot to enter it in my checkbook.  Why?  Because I was very sick through December.

That takes me to another frustration today:  I now have tendonitis everywhere in my body that has a tendon, head to feet.  This is diagnosed as a side effect of Cipro, uncommon, but I have lots of risk factors.  It hurts.  Everything hurts.  I am not allowed to take major anti-inflammatories, really really don't want steroids, which throw me into worse moodswings.  And here it is:  it was the wrong antibiotic for the UTI.  I went to the OSU emergency room for, on my transplant nurse's advice.  They took a urine sample to culture. And nobody ever looked at the urine culture, which showed that the bug I had was resistant to Cipro, until I went to the Riverside ER six days later.  They called and asked for the results.  By then it was so bad I had to spend 10 days on an IV antibiotic.  Furthermore, Cipro is a big antibiotic you don't want to become resistant to; you might need it some day.

Okay, human error.  It was Christmas season, nobody wanted to work and serve people.  OSU has a big staffing and oversight problem.  It starts with the nursing and medical schools, which should be screening people not for IQ and grades, but for why they are going into medicine - is it just for money and status and regular employment?  Or do they really want to care for the sick?  Maybe the hospitals need to make it clear when they hire people that everyone will work over the holidays, when many many people get ill from the stress and partying.  It is the worst possible time for doctors to take the week off.  But obviously, many do.

About the pain, my excellent muscular/skeletal doc (sports doc) told me to call him anytime if I need to.  Even over the weekend.  Yes, he did.  He is an Ohio Health doctor.  They have a mission of service.

Okay.  Now, like the Dalai Lama, I need to transcend life's myriad difficulties.  I see the sky is blue outside my window, a sort of watercolor French blue.  The old Austrian pine loves it, you can tell.  The oak branches drink it in, so does the cedar near my window, though it is cold as hell.  It is bringing a koan to mind that I can't quite recall, about What do you do when you are plunged into intolerable cold (or is it heat)?  I know the answer, but can't recall the question.  Maybe someone out there can tell me how it goes. 

Meanwhile, it's time for very gentle body work and meditation, renewing my intention to be kind, including kind to myself and everyone I meet. Then off to the banks.

postscript January 2013.  It turned out they had tried to reach me by e-mail, but I hadn't updated my e-mail with them.  Whoops.  Furthermore, they were polite and agreed not to charge me this time.  There was perhaps an absence of warmth, but who could blame them?

When blue days are golden

Today I talked with a friend who suffers from depression, a more pervasive kind than the mood swings I have been experiencing since the steroids used during my transplant surgery in October.  She is a person who works on herself, and she's looking for what you could call coping skills. My doctors and I would rather not add to the medications I have to take, so I've also been working on how to be okay despite not feeling good.

A good color to look at when you're depressed

 Just now something came in my mail that ought to sober anyone up:  a letter from the veterinary clinic explaining why our favorite doctor has not been available for some months:  a neurological disease that began as a virus has attacked his spinal cord and brain stem.  It could have killed him and, the letter says, has left him with a lot of physical therapy to do.  He is young, compared to me, and so caring, so nice.  He always seemed healthy and full of life.

When you feel bad, you just feel bad, regardless of cause.  Depression is complicated.  You perceive the world differently, you think differently, you feel lifeless, you have no enthusiasm.  When I feel like this, it helps me to remember how bad off I could be, to remind myself what other people are going through - people like my doctor, his wife and kids and parents. 

On a bad day, remembering that I am not at all bad off has to take place in my logical left brain, a statement that seems detached from "me."  Nevertheless, it is true, as it is true that a feeling is just a feeling; a mood is just an emotion that is stuck, emotions have no reality, but come and go like the wind.  And there are plenty of things to be grateful for.

A couple of years ago a friend of mine had a heart attack.  I can imagine how frightening that must be, because I've since had two episodes of my heart going out of rhythm.  The second one was so big that I knew - didn't think it, knew - that I could die right then, with no warning, no chance to prevent it.  So I understand when Chris says that every morning now when he wakes up he feels grateful to be alive.  Me too.  Even - if you know what I mean - even when I'm not.

Signs of life

I am happy to see the snow juncos back, though they signal winter's coming.  And I am happy to notice myself thinking hard this Sunday morning about political action.  I haven't had the energy for that in at least five years.

I began by thinking about the young people I have known through the transplant and dialysis e-lists who blow out a transplant.  College age kids who want to live like their peers, getting drunk and doing drugs, which is called "partying" these days, neglecting their studies and assignments and then staying up all night to do them.  I thought, How these kids need a new peer group, need to make radically different friends - and there are some sober, mature kids to be found.  I thought, Wun could start something like that.  As it is, we don't even have a general support group for us new abdominal transplants in this city of a million - it apparently withered away.

My thoughts went to the national Opt-Out Law, which does not yet exist. Currently, you get a chance to donate your organs when you apply for a new driver's license; you have to opt in, that is, say Yes.  Otherwise, the heart, pancreas, two kidneys, liver, corneas, and I don't even know what all will be buried or burned with you.

An Opt-Out Law would simply change the procedure so that if you don't want to donate after death, you have to say that.  I don't know whether this exists anywhere but in a kidney doctor's dreams, but it sounds simple.  (A quick search found that such a law was introduced in New York state, but I didn't find anything to say it passed.)  Thousands of people die every year waiting for a transplant.

I thought about how I would seek out a legislator and talk to them - someone has to introduce this as a bill, I think (more study is needed), and surely it should be federal.  I thought how I would point out the financial advantage to oh, everyone, but especially the US budget.  Medicare is covering 80% of the cost of my transplant, or about $144,000.  That cost will be made up in less than three years, since dialysis costs about $60,000 a year, and that's just the basic cost.  People on dialysis usually have all sorts of health problems, more cost.  There is a greater social cost in a seriously shortened life span; and well less than half of those on dialysis are able to work, because it is an inadequate treatment.  But it's the savings that should make a good argument for a legislator.
~~~
later - A status update
Everyone I know tells me my color is so good - that's how pale and wan I was.  But I am noticing now the difference in my thoughts.  Even if only for an hour this morning, I was imagining taking action, doing something.  Thinking. 

This, too, will probably pass, as I ride the moodswings brought on by the massive doses of steroids.  This one bottomed out last Thursday, which found me irritable and pessimistic, wondering who I am, anyway.  Today, calm and happy.  Tomorrow the mood may go higher, and I'll be scattered and talking too much, though I try not to have expectations.  I mention this because I glossed over it in my last post, Oh yes, moodswings.  They're not fun and games - but still infinitely better than the alternatives.

Why not me?

Talking to a friend last night made me realize how accepting I’ve been about all this, the medical mistakes, the many discomforts of hospitalization, including dreadful food, the pain and difficulty doing the smallest things, the low-calcium event, the tremors and other side effects.  Now I have reason to think I have a UTI.  Hope it’s not in the new kidney - but I know that hoping won’t make any difference. It is not just my personal will and desire that’s running this convalescence, though I can take care of myself and take my meds on time.

Even five years ago this UTI would have frustrated and scared me.  But I know I’ve had a very good recovery so far, and that these things happen - when you take immunosuppressants, you get infections.  I have other helpful knowledge; having had many UTIs over the years, I know antibiotics kick them out.  But if I look back at the person I once was, any medical threat sent me into a very anxious state.

This relates to something I contemplated last week - my dislike of a really low mood.  I was alternating days low, fine, low, fine, and by “low” I mean absolutely flat and anhedonic, not able to take a walk in the sun, though I knew it would do me good.  Just trying to pass time, knowing that things change and I could start to feel better any time, at 6 pm, or next morning.  What I really didn’t like about the low moods was the tendency to pessimistic and cynical thoughts.  It reminded me unpleasantly of my father’s attitude.

The Witness in my mind knew the moodswings were predictable, as massive amounts of steroids slowly left my system.  Witness looked up endorphins and serotonin, which I was clearly lacking just then.  I couldn’t go jogging, and carbohydrates and chocolate weren’t working.  I didn’t know any other way to kick-start the neurotransmitters of feeling good.  So I called and made an appointment with one of the OSU resident shrinks, who would know whether I should have a medication.  That was last Friday.

Meanwhile, I was able to actually sat upright and meditate properly with the candle and incense I love.  During meditation my mind went to the issue of low moods, how I wished I could accept them without all these mental reactions like I hate feeling like this, this book doesn’t interest me either, everything on Netflix is stupid, I haven’t had one speck of joy today, I just want this day to end.  The Witness watched my mind do that, and we went back to my breath.

Then from my right brain, God bless it, came an image - of a becalmed sea.  Flat, smooth, motionless.  There was a little sailboat on it.  The verbal mind came in with the thought, If that boat doesn’t want to go anywhere, no problem.  It’s the desire to get somewhere that creates unhappiness.  I love my right brain.  It has been a friend to me in ways like this.

This seemed to qualify as another realization that emphasizing our desires just  makes us unhappy.

By the time I saw the doctor Wednesday morning I had had a series of just-fine days, no more lows, but was now being troubled by insomnia.  Another predictable event.  As a woman I met when I was in radiation therapy for cancer many years ago said, "Why not me?"  It took me years to understand what she meant - that  there's no reason she, or I, should be exempt from sickness, aging, and death.  And no reason to stop enjoying life when they hit.
~~~~~~~
postscript: With a new prescription for Ambien, I slept well last night.  What a difference that makes!


[image:  Spirit of Mystery, becalmed, by Pete Goss]

Demons

[Spinning wheel, Blood, Sweat and Tears, posted on YouTube by flutooth.]

I was going to write a post on my current experience with steroids titled "Two weeks in another town," but it is looking like more than two weeks. Before you kick me out of the Football Hall of Fame, let me explain.

Two weeks and two days ago I let the musculo-skeletal doctor ("sports doc") inject my ankle and hip with two half-doses of a gluticosteroid. I know I'm reactive to steroids, and I won't take them orally, but I had gone in limping with what turned out to be a magnificent flareup of arthritis and bursitis in two locations. And this doctor has done good things for me before. So I took the shots.

And my, I felt good, once I got over two nights of serious sleep disturbance. Interested in life, creative, generous, and - this is important - the pain reduced radically. I didn't mind a bit that my instructions were to "take it easy" the first week. As a poetic type, I've spent my life looking for an authority figure to tell me that.

I didn't realize I was up until after my mood switched. A couple of days of being too apathetic to run the Roomba found me telling Tom, "I have a sense that I'm coming closer to death, that I don't have long." Then the mood switched back last Sunday night, around 9:00. Hello, come on in!

As moodswings go, this one will. (I couldn't resist.) Seriously, as moodswings go, this has been okay, more like being a boat in a lock, the water rising, then back down, not like the biggest roller coaster in the world. There were also days in this little trip where I found myself in the blue lagoon, balanced, calm, happy, interested in everything, tending to use the adjective "beautiful." Sort of like we feel on those magical days in spring.

I once saw moodswings as a demon that popped its trollish head into my pleasant cave, or more accurately, did a home invasion. Now I think a mood is a mood, and the demon is more general than that. Around its neck it wears a name tag that says Attachment. Attaching to the high, attaching to the peaceful moment of balance, attaching to the idea of how I like to feel, seeing that preference as terribly important.

Shunryu Suzuki says we are given just enough problems (83). This morning I picked up the results of my last blood tests. My serum creatinine is high, which indicates lowered kidney function. Tom reminded me that this has happened before, and I recovered from an incipient drama that stars me being reintroduced to dialysis. The good thing, Tom reminded me, is that things always change. Yes, and sometimes for the better. In this case, my fresh problem took my mind off my mind.