Being Sick

I'd like to stay with you a little - look how long it's been since I posted.  

I've been so sick so long, the shingles pain slowly receding, the serious side effects from the pain pills still a problem.  Trying to complete therapy for the frozen shoulder, and worst, a raging UTI that put me in the hospital.  Now I have a PICC, a sort of semi-permanent IV in my arm, and we do a dose of antibiotics every night.  Usually, the third day on an antibiotic is like a charm, the sun rises, I feel health.  Not this time.  This one really bit in.

UTI's bring depression with them.  So does February.  And I have a depressive disorder.  I constantly try things that might bring me out of it, and made the step of ordering Toni Bernhard's How to Be Sick for myself, gave the library back their copy.  I wish I had her life, to tell the truth.  She has a complex fatigue syndrome, and it seems pretty consistent.  And she is surrounded by Buddhists and teachers.  

The transplant has been different.  A huge shock to the system both with the surgery and the steroids.  Then one problem after another; I never get adjusted.  Any little gain, like getting a haircut, is followed by a major setback.  Tried joining the church choir, but then came the shingles, too much pain and fatigue.  Strange swelling in one foot and ankle meant a night in the ER.  It takes two days to recover from that. Tried a very promising art class, but that went very badly, a story I don't want to tell.  When I am depressed, I can't be around high-pitched people.


Maybe the class needed alcohol.  Alcohol depresses the central nervous system.  Our senses are blurred.  The jagged anxiety people spill all around themselves settles down a bit, and anyway, everyone's talking, nobody's listening.  But not me.  Alcohol just makes me tired and dull.


I don't think this antibiotic is working.  Or the depression is very powerful in its own right.  The acupuncturist put two tiny seeds in my ears that I can touch a bit and do acupuncture with them.  So I will.

What Oprah Doesn't Know

So was looking over a Nov. 2011 O magazine, a workbook on finding your bliss.  You did exercises and then looked to say what “type” you are, that is, what motivates you.  So, what you need in your work.

Five clusters were given, and as I read them and thought about my answers, none of them were about me.  But on the next page was one lonely left-over motivation - enlightenment.  Well, that’s a relief.  Surely that was me.  Though connection and reward and security matter to me, I want most to be my authentic self (or, for you Buddhists, my authentic changing self whose identity is never fixed).

And I think that all of us fundamentally want something we believe security or enlightenment will bring us: happiness.  That’s the flaw in Opah’s whole scheme - it doesn’t go down to the deep layer.  If we are not fundamentally contented and in touch with reality, nothing will make us happy.  If you want an example, look at the latest dead celebrity, or go back to Michael Jackson.  There is no such thing as enough achievement - external reward - if that really matters to you.
~~~~~~~
Health Update:
Monday I went up to my doctor and gave a urine sample.  If it shows too many bacteria, they send it out for sensitivity culture.  You’d think that would be back by Wednesday, but it was after hours Thursday when they called to say it’s a bad UTI and I need to go on an IV antibiotic.
 
So today the Home Health nurse came at 12:30 and made four (4) attempts to get an IV in my one poor skinny overworked arm (the other arm has lymphedema).  She got more and more distressed, but at 1:30 had to give up and make phone calls.  So the word came trickling back that I would have to be admitted to the hospital to have a PIC line put in, a sort of long, fancy IV that stays in place.  Not through the ER, I said.  No, no, we’ll have you admitted directly to the Med Ward.  We’ll call back. 

No call back yet.  I know the PIC team usually works until 5:00 and is in a very bad mood if they are kept over.  So, sigh.  And they just called.  And yes, I’ll be there.  And will have to add a photo to this later.
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Update 11:00 pm
Admitted to hospital 4 pm.  Total confusion, what a mess.  Finally at 7pm. PICC inserted, X-ray comes back, it isn't right.  PICC re-inserted, X-ray says okay.  Home 9 pm beyond exhausted and hungry.  Enjoyed grilled cheese and tea and Lilyhammer.  11 pm, PICC bleeding.  Call the help line.  It's normal.  Go to bed.  That's good, because I did not have it in me to go back there.  Turns out you can have a PICC inserted outpatient; you make an appointment.  My doctor didn't know that.  This is so typical.  It's all too complicated and specialized, so nobody ever knows how the system works.  Not for the first time, I wish I was one of Queen Elizabeth's Corgis.  You bet they get good medical care.
Yeah yeah, accept reality.  But you don't have to like it.

Grandma Talks With God, a very short play

God:  You again.
Me:  [shamefaced nod]
God:  Okay.  What's up?
Me:  Well, now there's this odd swelling on my left ankle, and the foot hurts.  I'm thinking it might be the bone edema again.  Also this.  [indicates stomach] Hurts.  It might be from the pain med for the shingles. 
God:  Ah yes.  Now I remember you.  That was what, last month?
Me:  [nods vigorously]  That's  right.  And I'm not over that.
God:  [nods sympathetically.]  I got you the pain med.
Me:  And don't think I'm not grateful.
God:  How can I help you, then?  There's no warranty, you know.
Me:  I know, I know.  I mean, it does seem you ought to get over one thing before...
God:  Does it?
Me:  I mean who designed this anyway?  
God:  Don't ask.
Me:  [sigh]  Anyway, I was thinking, maybe I'm ready to talk about a trade-in.  Trading up.  I mean, I must have some Reward points.  Maybe something with heated leather seats.
God:  [slowly shakes head]
Me:  It doesn't work that way, does it? . . . Okay.  What can I choose?  Country, maybe?
God:  Nope
Me:  Gender? Built-in longevity?  Intelligence?
God:  No.  Sorry.  Your soul - if you have one, I don't know, you're a Unitarian and a Buddhist, aren't you, I'd have to check your records.  Your soul, if you have one, lands wherever it does.  Luck of the draw.  One poor guy last week, he wasn't paying attention and he ended up an embryo in a pig.
Me:  Sounds boring.
God:  You have no idea. 
Me:  What if I don't have a soul?
God:  Ah, yes.  Then zap you're gone.  Your parts, we can call them pixels, go all over the place.  You come up as a buttercup, a drop of water.  You might like it.
Me:  Well, I guess I need to think about this.
God:  Take your time.  I'm not going anywhere.  Any more questions, you know who to call.

The Community of the Wistfully Unwell

[Watch the lion cubs for a dose of oxytocin, the love chemical.]

Well, we're definitely not in church - just got up at 10:30.  Which means I took some necessary pills, cleaned last week's newspapers off the kitchen table, and am still on my first cup of coffee, in my robe.  I doubt that we're going to be up to meeting folks for lunch.

Slept a lot yesterday, too.  A night in the ER just takes it out of you at my age.  At least Tom got to go home at 1:00 and get maybe 7 hours of sleep.  But they woke me up every hour until 4:30 for some stupid thing, like my list of meds - which they should have gotten first thing.  I finally got in an observation room and was let to sleep at 4:30.  Interrupted by a very loud girl to take me to get the goddam ultrasound, which is why we were there - as in why is the left foot swollen?  I woke up at 9:00 with a tray beside me of cold coffee, cold white flour pancakes and cold wheat toast.  What are they thinking?  The ER is definitely worse than the regular hospital, and it is not built around your comfort and rest.

When you're young, you miss a night of sleep and you can recover in a day.  This is going slowly. 

Looking forward to Downton Abbey!  This makes my life almost worth living, this and friends, especially Laurie, who e-mails, comments, and plays Words with me.  She is often invalided by back pain herself.  How good it is that we poor invalids found each other and can share our dumb invalid lives online.  The community of the wistfully unwell. 

I am reading this book, I've mentioned it, How to Be Sick.  Toni Bernhard, the author is just permanently very sick following a strange virus, pretty much lives in bed.  Even after years of this she finds herself hoping to be able to attend something important, but flattened by fatigue.  I think that, like me, she hopes she might feel better some day. That's the killer. I am not impressed with glib talk about accepting uncertainty when it comes from someone who is healthy, can work, thinks they have decades ahead of them.  But when Toni talks about it, she knows what it's about.

As for my trip to the ER, the doppler ruled out obstruction by a blood clot or some other mass.  That is a start.  But it feels like a failure, somehow. 

On Art

This morning I had the experience of hearing music the way I could hear it when I was young.  This was because it came directly to my ears via earphones, not coarsely filtered by tiny "hearing aid"radios, or fuzzy and indistinct as my unaided hearing is.  And the above is a really clean recording, unlike so much that's on YouTube.

And Alberta Hunter was a genuine singer.  She means the song.  As her patter shows, the song comes from her experience.  The song goes from her to the listener.

I recently discovered a book like this song, The Illumination by Kevin Brockmeier - I've mentioned it before.  It is art, or Art, if you like.  The writer has shaped his vision and experience carefully, as if to present it to you as a gift.  I can't read this book slowly enough - there is such wealth in every paragraph.  I keep coming to sentences I want to hold out and share with someone.  Appreciating literature is really what I was trained to do as an English major.  Taking it, respecting it, going in to be with it.

From me to you - that is the essence of Art.  It ignores the outside roar of the crowd.  Shuts it out.  It does not try to win accolades, or promote itself.  It is not a commodity, not a toy or entertainment or a way of making money, but an authentic experience.  It is created with fidelity to the work itself.  It comes from the writer's private world, and is an opening into that world.  And because it is really human and intimate, and shaped with love, it is sacred, and can give our difficult lives green pastures in which we can rest for a while. 

(Van Gogh said he created The Starry Night out of "a terrible need for religion.")

Wise inactivity

Stuck in a vow.  A recent post from a friend about how hard it is for her to write, no matter what she does to ease her circumstance, made me wonder whether writing fiction is really what she wants to do.  We speak of "getting in a rut."  Someone has said a rut is just a grave with the ends kicked out.  That's what happens when we make a major life choice and decide that this is IT!  This will be my life from now on.  I vow to succeed in this. But you can't know what it's like and what you're like until you try.  This is similar to the procrastination problem; people think they have a problem with procrastination.  But my own experience is that if I'm putting something off, I have my reasons, and they need to be looked at. 

This has nothing at all to do with my life right now.  A couple of years ago I gave up my commitments and vows one painful thing after another, and I still haven't been well enough for long enough to get going again.  

Right now all the energy I have goes to minimizing my pain, and otherwise keeping myself as healthy as possible, which involves complex things like managing my GI system, and remembering to take Tussin for the chest congestion that never leaves after the cold this year.  

And relaxing.  Shingles is not just about excruciating pain.  It is a virus that can also cause other symptoms, including fatigue.  Last night, left to myself, I slept twelve hours - !!!

This morning I turned to a book that helps me relax with all this, How to Be Sick by Toni Bernhard.  It was a useful short chapter about being wise in our actions, and how being wise sometimes mean choosing to do nothing.

A friend suggested icing the rash, and that turned out to be helpful.  The pain is at a place right now where anything touching ever so lightly hurts.  Anything, a soft cotton t-shirt.  So I am trying something another friend told me about, wearing minimal clothing around the house.  This is not sexy when you are 69.

My neighbor Cindy has been talking to me about a collage class she is taking.  We thought about getting together to do collage, but I tire too easily, so she and her daughter Lauren came over bringing me materials and inspiration from their collages.  We're hoping I can come with them to the next class.  Getting out a little and around other energies is very good for me.  So is artistic inspiration.  

Another friend and I talked about an author he admires, and that got me to reading The Illumination by Kevin Brockmeier.  It's very good, deep characterization, a beautiful command of the language, so you read slowly and really put your attention into it - you have to be a creative reader.  I read some paragraphs twice, because they are so good, and think about them and why they're so good.  


And today made it to church all dressed up in purple earrings Laurie made.  Yes, I wore other clothes too.  Hey, it's cold outside. . . . And the way to get this posted is to just go ahead and do it without a photo, must get ready to watch Downton Abbey.  Love to all.

You saying this is a good day?

Irrelevant image - Tashi vanquishes the Mu (that black shape upper left)

Grandma's health update.  The shingles rash is now mostly healed, and what they call post-herpetic pain has set in.  It is more than twice as bad.  At the beginning, 5 mg of Oxycodone was enough, maybe 3xday.  Now it's 20 mg every 4 hours, if I can wait that long, and that doesn't do it.  The only worse pain I've had was labor and the sharp pain of a bone in my foot breaking.  The pain wakes me up at night and I have to take a dose.

How long?  Nobody knows.  I did get my wits together today and had an acupuncture treatment.  They are best with pain.  He actually put needles at spots in the rash, and I gasped.  And a low, easy electric feed through them.  It was okay.  

Got a mailing from Lew Richmond, a Zen teacher I like who had a horrific health event he wrote about in Healing Lazarus.  He had this to say about the koan that troubles me most -

Each of us is Phil the groundhog . . . each of us is a monk in Ummon's assembly, facing the mystery of our human life as it unfolds day by day. "Every day is a good day" means every day is incomparable, every day stands on its own. It's our responsibility to make of each day the best we can, knowing this.

Sometimes it's oh, getting my warm bathrobe washed.  Doing a big grocery shopping, being patient with the carry-out guy.  Being patient with the pharmacy not having enough oxycodone and seeming dumb as an ox about what we could do about it.  Being patient with the multiple phone calls from my doctor's office about lidocaine patches, and how I had to keep telling different people why I. Don't. Want. To. Use. Them.  (And why would anyone think you could stand to peel adhesive off this tender skin that feels like a third-degree burn.  Or first-degree.  Whichever is worse.)

And as for making the best of the day, rather ardently focusing on gratitude for such things as a pain manual from a friend - and beating Tom at Words with Friends by one point.

So, daily life, that's what I do.