My Really Bad No Good Horrible Life

I want to tell you what happened to me in early 2013. To start with, go to this former post, which came my way today via Facebook's throwback machine. See how creative it was, see the lightness of attitude? See me, as a person who was not brain damaged by a prescription medicine. A bipolar woman who did not have 48-hour rapid cycling.
So here's the cause and effect, laid out for you:

twenty zombie years of lithium damages my kidneys --> (that's an arrow, meaning leads to) 1,000 mg of steroids at kidney transplant -->
I can't sleep after that -->
Psychiatrist Darryl Brush prescribes Seroquel for sleep, then more -->
I notice facial tics. It's tardive dyskinesia -->

[Brush tells me to discontinue the Seroquel. Now I can't sleep again, but he says he can't prescribe anything more, I take too many medications for anti-rejection, blood pressure, fibrillation, thyroid. He doesn't tell me to be careful, that the TD might affect my balance, or prescribe gait and balance therapy. Later the neurologist will do that. But I've already fallen by then.]

The TD affects my balance and I fall. A bad fall off a stepstool. -->
I hit my head hard, and get a concussion.  -->

[and get a compression fracture in my back. That's not nothing, but it's another story.]

And that's the end of it for me.

I had entered the years of being weird.  After a while I noticed that I felt great one day and horrible the next. I marked predictable good days on my calendars and scheduled everything only on those days. But on the good days I was high, so I didn't get things done; instead I did crazy things like buy a Loudmouth Leo the animated speaker. I wrote lots of first drafts and forgot about them. I tried to find something about 48-hour cycling on the internet, but can't - I don't know that in studies this is called 48-hour rapid cycling. I didn't see another psychiatrist - would you? Thank God there's Leo to make me smile.

On the bad days I sometimes get dressed. I do not let myself dwell on ways to kill myself. There is no clear middle space, the kind of time in which normal people do ordinary things like balance the checkbook and get the oil changed.

At last my husband tells his doctor about this, and she says, Oh no, that won't do. She has to get this fixed. She writes down the names of three psychiatrists. I glance at the list, I have less than no confidence in psychiatrists now, but I've met one of them, so I make an appointment with him. He is not on Medicare and costs $10 a minute. And guess what - he knows about this condition. He prescribes epitol (brand name Tegretol), maybe the only psych drug I haven't had a bad reaction to. And guess what? This 48-hour rapid cycling is a known condition. It can happen to bipolar women who have a closed brain injury.

After a slow dazed week it worked. It worked so well that every day was the same. I started to have a normal life.  But the story didn't have a happy ending there. It suddenly stopped working. He raised the dose, another dazed week, now it's working again. He explained the mechanism, how this happens with Tegretol, and is confident it will stabilize within the year. Christ, I hope so.

I am writing this because I want to leave footprints for other bipolars. And most of all I want to spread this message --

Don't take Seroquel unless it's really necessary. 

Not even when it's called quetiapine, the generic. It can ruin your life. It's a powerful drug that should only be taken with care when severe episodes are a problem, not as a sleep aid. It can and does cause tardive dyskinesia. And TD can harm you as it did me. Permanently.

This is Your Life

There's anxiety, and there's pain; then there's anxiety about pain, which more than doubles the pain.  By 9:00 last night the pain in my back and neck had gone up through my TMJ until the left side of my face hurt, and I had to do hot compresses.  Dammit.  Part of it was just too much sitting upright, the rest was the irrational anxiety about what the MRI will show and what comes next for this back injury.
This pain has been worse since the MRI of my upper back and neck Monday night.  And I am waiting, waiting for a call from the neurologist who ordered the test, and who will, I hope, suggest some way to cut back on the pain, which seems to be made worse by walking.  Now it's Friday, which means if I don't hear today I'll have to go through the weekend trying not to imagine the worst, which is, for me, being in a hospital.  After that dreadful night last December - and that was in one of our better hospitals - my tolerance of the constant abuses there has turned to something quite negative.  Like hate.

Furthermore, the fact that my fall in May was caused by Seroquel has amplified my distrust of the whole American medical system and led me to notice that there have been a lot of lawsuits about these drugs, and the movement disorder they cause that never goes away.  (It is called tardive dyskinesia.)

I don't like to be anxious or angry.  Don't Want! any of this.

Well, this kind of adversity is a common enough feature in the landscape of old age, but I like to think it isn't necessary to melt down over it.  My formal Zen study led me to find a post from a blog by Ben Howard that happens to help just a bit my perspective. The author refers to a passage in Dogen's Instructions to the Cook, which I decided to format as if it were a poem:

Do not get carried away,
by the sounds of spring, 
nor become heavy-hearted 
upon seeing the colors of fall. 
View the changes of the seasons as a whole, 
and weigh the relativeness of light and heavy 
from a broad perspective.

My first teacher, Ama Samy, said to me, at least once, "Experience everything, but don't get carried away."  He has a rich Hindi accent, so it sounded like "Don't get caddied away."  This is good advice for anyone with moodswings, or who golfs.  

More from Howard's blog:  "Commenting on this passage, the Soto master Kosho Uchiyama urges us “to be resolved that whatever we meet is our life,” and to “see the four seasons of favorable circumstances, adversity, despair, and exaltation all as the scenery of [our lives].” Oh yes. The default scenery, in fact, that the Buddha warned us about. Life is not that fabled isle of bliss they promised . . .

but more like this at times:

Heavy.  And that's just the way it is.  Everything broken, including the medical system and, maybe, the doctor's phone.

This is making me think it's time to publish a poem I wrote years ago after being forgotten in an exam room. Really.  (A nod of thanks to Ken Vail, who drove me to that doctor and waited patiently.)

                             Doctor
or, Jean-Paul Sartre in the Examining Room           
           
Here in a windowless room–this dying body–
naked beneath a paper towel,
waiting, waiting for Doctor to come and ask,
How are you?  Where do you hurt?
How long have you felt this way?
Doctor is busy, invisible accountants
issue denials of benefits,
nurses in running shoes flash smiles.

Doctor is here I think he is running late,
this will explain our policies.
You are responsible sorry
I know these rooms are cold
but Doctor wears a suit under his lab coat
we keep it comfortable for him
here, here is a paper blanket
sorry we have no tea, the pot is broken
no one has time, time . . .

Are you still here?
sorry the office is closed
the computer is down please call
tomorrow for an appointment we are
automated for your inconvenience
please hold please remain
on the line, your call is important to us
your call will be received in the order 
in which you enter your patient account number
date of birth and death, social
followed by the pound   invalid   invalid

Sorry, Doctor has no more appointments
this year.  Doctor is at a convention
and does not answer his page
someone
will try to get back to you
in the order your call
was tomorrow

Wait—we have just been informed
Doctor is no longer with us. 
Doctor is dead.
You are condemned to be free.
~~~~~~~~~~~~
p.s.  Put in one more call to the doctor just now.

Snap!

A further note on how we handle things, springing off yesterday's post.  Barry Magid says we can have two approaches to illness or pain:
1.  try to always tough it out, and never admit anything is too much for us.
Or
 2.  easily feel overwhelmed and always think things are too much for us to handle.
But wait - for me, though perhaps not for everyone, there is a third way "I", my bipolar body/mind, can react:
                      Snap!
I do snap.  People do.  You might be surprised.  My own mother did when she found my father carrying the phone number of a slim, intelligent divorcee.  I won't put the whole story here, but he apologized and she came home and spent months sitting in a housecoat in the breakfast nook smoking and saying over and over, "That woman's evil.  Evil."  My mother was a regular ordinary non-bipolar oppressed woman of her generation, and her generation didn't put crazy people away or even on medication.  I tell you, my father paid heavily for apparently not even having the affair yet.

Part of my problem is simple chemistry.  I need to get off Seroquel, it's causing tardive dyskinesia, an ugly problem.  But without it I can't sleep.  I have not been able to get to sleep without medications since the transplant until Seroquel because of the 1000 mg of steroids they injected me with because they think that helps prevent rejection.  There was no negotiating a damn thing with them. They are surgeons.

When he saw the symptoms, the shrink had me ramp down and off on the Seroquel and I did and now I can't sleep again, and furthermore, I am going snap! snap! at people like a f--------- bowl of sugar snap peas.  The shrink now recommends 3 mg of melatonin.  I recall that the transplant people took me off that at the time of the transplant, and told me not to use it.  So I called the transplant nurse this morning and told her my story.  She explained why it may be Monday before she can get with the doctor about this.  Okay.  Meanwhile, I still have Seroquel, which, BTW, is a hideous drug of the kind mentally ill people go off of, because it makes you stupid. STOOPID.  Next thing you know, you're capitalizing things and using lots of exclamation points!!!!!!!!! and trying to think positive.

And here's something else that occurred just now, NOW, in the f------ present moment.  Backstory:  Tom has been going around in a black cloud of anxiety for a month about a family meeting with his mother's estate attorney that was to take place this morning at 10:00 this morning.  Meanwhile there was all his angst about, IF they ever got his new van ready, IF he had the van in time, then should he drive up there, if so should he have a friend help him drive or should he drive alone and stay the night. There are no simple decisions in the Tucker family. Christ, you ought to see them make macaroni and cheese.  I'm sorry folks, I seem to have turned into Phyllis Diller or something, only without the facelifts.  But if it's funny it's not mean, right?

Anyway, they called at 10:00 am, the time the meeting was scheduled for, to say the meeting is abruptly cancelled.  Without explanation.  Not the first evidence of this lawyer's flakiness.

See, it's not about me, it's all just karma wheeling all around in that vast potential, things happening for reasons that are not my fault or choice, entwinement through no act on my part in the lawyer's karma (maybe she killed herself because she just couldn't face another meeting with the Tuckers!).  But it comes down here and bites me because Karma is a bitch, and I go Snap!

I am not a little dot at war with the universe, as if the universe was sending evil ugly orcs up over the hill one after another specifically to fight me, and all I have is my magic sword.  Anyway, girls don't have swords, for obvious symbolic reasons.  I have to rely on Wonder Woman and her magic jewelry for imagery.  She's not all bad if you can see past the soft-porn costume.  Neither is her Wikipedia article.  Reading it I feel better already.  Maybe I've snapped out of it.
~~~~~~~~~~~~~~~~~~~
p.s. It's Saturday now, 10 am, and the financial planner who was coming to meet with us called to cancel. Merciful Buddha giving another lesson in how to roll with the punches. Ah, no meeting!