Still Practicing

My favorite cat-not-living-with-me, Henri, le chat noir, sent me this this morning ~

I miscalculated when jumping from the floor to a chair today, and tumbled to the floor in a heap. I immediately began licking my paw nonchalantly, so I'm pretty sure no one noticed.



That's what I do when I fall, or my human version, which is running my hand through my hair to make sure it's okay.  But I am not okay from this last fall two weeks ago.

Yesterday I had my follow-up with my Good Doctor. . . .
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Actually, that was Wednesday.  It's Friday now.  I just saw another doctor.  But before I launch into these stories, I'll just comment that I may have post-concussion syndrome from that fall about two weeks ago, and that could last the rest of my life.  However, that might not be very long.

When I saw the Good Doctor Wednesday afternoon, I got bad news from the x-rays he took after the fall.  I'll quote from the imaging report:  "an apparent compression deformity at T8 with loss of central and anterior vertebral body height of up to 30%."  We discussed this.  No physical therapy, no.  No surgery recommended, no.  He prescribed a pain pill specific to spinal nerve pain, and it helps.  He talked about not doing things that put my arms behind my back, or reaching up high.  I'd already told him about how some things like walking and carrying a purse make it hurt much worse.  So does typing.  He said meaningfully, "Don't fall again."  Rest, etc.  I felt he had a look in his eyes like he was talking to a dead man.  You know I'm fanciful.

I didn't tell him that the night before when I showered I was puzzled by a feeling of thick skin in one breast.  It looks odd too, and so on.  I knew about skin like orange peel; my sister-in-law got it when she had cancer.

Just now we saw the Substitute Internist. (Mine was scheduled up.)  He seems intelligent, did a professional exam.   He said, yes, a mass, we will schedule a diagnostic mammogram and ultrasound at Riverside, and then.  That will be next week.  Of course, we can't even schedule it until Tuesday.  You wouldn't want me to forget to complain that all the doctors will be taking a long weekend.  Monday is Memorial Day.  My peonies are in full bloom.


I almost don't want to post this because it is exactly don't know whether to laugh or cry.  I keep getting sort of silly and I love posting dumb things on Facebook and being in touch with people that way.  Went to the museum with a friend last night for a talk, and just loved it.  It's up/down anyway, you know me. Not long ago that was my worst problem.  Another thing - all my life I got through unbearable things by keeping up a front, which meant not telling anyone.  But I don't think that's a good idea, now. So in a way, posting this is practice on bearing witness to the truth of life.

Pain and Suffering

(Newser) – The FDA today mandated urgent “black box” warning labels on Cipro and other antibiotics of the powerful flouroquinolone family of drugs. The antibiotics carry a risk of tendinitis and tendon rupture, which could leave patients severely disabled, the AP reports. Particularly vulnerable are those over 60 and patients who have undergone heart, lung, or kidney transplants. 

That would be me.

I might have written already that I have another UTI.  This one is responsive only to one oral drug, Cipro, which is much safer than putting a PICC in again for an IV drug. I really hate to take Cipro, which can weaken tendons.  I had it over Christmas 2010, and we suspect it is responsible for my torn rotator cuffs - one side effect is on tendons.  I really hope my Achilles tendons don't tear.  Cipro is a very big drug, and there have been attempts to lower its use.

The nurse who called about it suggested I call my transplant doctor to see whether they wanted to adjust the dose of my cyclosporine (Neoral).  So I called the transplant nurse.  She called me back to say that they don't like to be adjusting it all the time, they don't worry about it as much as the outside doctors do.

Thank to the internet, I learned that Cipro tends to elevate the levels of Neoral in your blood.  And the light dawned.  I have this big, stuffy achy head.  Eyelids more swollen.  A sense of looking at the world through confusion.  Just like post-transplant, when they had me on 150 mg a day. After they lowered it to 125 mg, then to 100 mg, I felt better.  Not terrific, but relieved of some of those symptoms of Neoral.

But here we are again.  The Cipro is for only a week, we hope.  But you know, a lot about all this is not fun.  Still hurting from the shingles that appeared in February.  Awaiting double nephrectomy May 9 and hoping it will put a stop to these UTIs, and the e-coli that are having so much fun in there evolving into strains that no antibiotic can touch.  I picture them having big festivals to celebrate their success. 

I don't think this is "complaining" on my part, though my parents certainly would have called it that.  And there's an excess of Think Positive out there, especially on Facebook. But I'm just getting used to the Lyrica, for post-shingles pain, and it's not certain that it's helping with that. Meanwhile, I am a walking compendium of side effects.


Damn it.  I get tired of this stuff.  But our task is to not let it ruin our lives.  The promise of Buddhism is that you can minimize these kinds of suffering.  Or, let me say, fear, pain, inconvenience - they don't have to be suffering.  They don't have to ruin your day when the honeysuckle are blooming right outside your study window.  And it's time to meditate.

Coping

Saved again by art, at least a little, for a moment.  I had gone to YouTube looking for the original of Henri, the existentialist cat, as the sequel is now going around on Facebook.  But this came up, Henri Matisse, in his old age, still doing art the way he could.  And this lovely quote from Matisse was there:

There is nothing more difficult for a truly creative painter than to paint a rose, because before he can do so he has first to forget all the roses that were ever painted.

And we are having such grave concerns around here, I keep erasing Facebook entries just in time, and not posting things I've started. We are waiting to hear the scheduled date for surgery to remove my native kidneys.  That's enough on this for now.  Here is the original Henri -

How to search for work

Update:  Not feeling well this morning, after a busy week, maybe too stressed - I think I am getting another UTI, waiting for callback from nurse.  You know. Otherwise, physical stamina improving, pain under control, trouble getting to sleep at night, generally happy.  Not much energy to write.
~~~~~~~~~~
But this very good advice came my way this morning because I subscribe to Ocean of Dharma (a site about Chogyam Trungpa Rinpoche's work).  I know many people are looking for work.  For the fortunate rest of us, I suppose it would also apply to other things we undertake.  There is a way that it is about not being guided solely by ambition or concepts. One of my Zen teachers, Daniel Terragno, often said to me, in response to my koan work, "Too conceptual."  Often enough that it stuck.  Have a nice weekend, everyone.

You can plan everything, if you plan in accordance with your present state. You don’t plan something in terms of what you would like to be. No one can do that. You can only plan based on what you are now. Now you need a job, therefore you are working on finding one. The real way of being without aim or object is dealing with the present situation, the completely present situation. The more you are realistic about the present situation—how much money you need, what kind of job you are capable of doing, what state of health you are in—the better your chances when you look for a job. If a person is off the track of relating with the present moment, consumed with what might be, then quite likely her job search would be disastrous.  [from Work, Sex, Money by Chogyam Trungpa.]

Hire Human Beings, or How to Fix the Economy

Click here for story

So I am on hold with the nice clinic where we have what used to be called "family doctor" but they didn't make enough money, so now he's our PCP.  This is not a horse tranquilizer. . . . So spent 7 min. on this call, 6 min. of it on hold while their hideous execrable music blared at me, ruining a Brandenburg Concerto, sometimes interrupted by ads about how wonderful this clinic is.

Why?  Did you ever think about why most medical systems use these * menus now?  Which everyone hates. Because some sales rep, or some presentation at a convention paid for by drug companies, convinced them that - .
(a) it was very cool and state-of-the-art to use technology any way you can get it.
(b) it would save them $MONEY$

And it certainly seems these days that's why they went into this field.  American doctors earn much much much more money than I ever earned at the jobs women of my generation were allowed to do.  If you want to see how inflated US physician earnings are compared to others in the world, click here.

It is my dear hope that all the women and people of color entering medical school will make the pay scale go down by sheer supply and demand - i.e. more doctors than we actually need. Although I have noticed that capitalism doesn't work as logically as we think it would.

But let's go back to the * menus (* means "obscenity deleted").  What happens when a dr. installs an elaborate $50,000 piece of technology/software to answer the phone?  He thinks it saves money - how?  By firing or not hiring a low-skill person who can basically answer the phone and make appointments.

Who did get work from this?  Educated aggressive entrepreneurs who run companies that design stuff like this, and their salespeople.  I'm guessing that the guy (man or woman) who actually designed the actual system isn't paid much. Who doesn't get money?  The one or two people this phone menu system replaced.

So, Buddhist thought leads us to our old familiar poison, greed, doesn't it?  This is the kind of thing that happens when people feel their job is to Take Care of #1, and believe they are separated from the rest of the world, so it is not their responsibility.  This is what happens when people just don't think of the result of their behavior, don't ask, What effect will this action have?

Want to fix the lagging American economy?  Hire more human beings, folks.  Stop hiring technology to replace the many who couldn't afford a college education, who need work.

Okay, I have to make another appt. now. . . . There. That one only took 2 minutes.  Their menu efficiently directed me to a human being.  There are lots of those running around the McConnell Spine and Sports Center. Lots of people taking phone calls and efficiently making appointments.  I love them, and my doctor there, who has given me his cellphone number in case I need help on a weekend. He seems to be about more than making money.

When I told the woman on the phone that I was having enhanced pain she asked, "Will you be able to get through the weekend?"  Jesus, I almost got tears in my eyes. Yes, I thought I would.  This kind of pain won't kill me.  Calling it fibromyalgia doesn't really get me anywhere - just a label for inexplicable pain in lots of places.

If you want to think Buddhist about this, think about Right Livelihood, one of the precepts, and one point of that Eight-fold Path I wrote about recently, which can help us discard our suffering.  (Along those lines, I should probably stop and meditate, which would cool my irritability here.)

Right livelihood starts with not harming, just like the Hippocratic Oath American doctors take.  Why do I even go to the clinic with the maddening menu system?  Because there are lots of things musculo-skeletal docs don't do.  Because it has the best doctors I've been able to find. And surely, having it take from 6 to 12 minutes to just make a * appointment is not enough reason to change doctors.  Is it?

Now, sigh, to make an appt with a dermatologist I will have to be totally naked in front of while she examines every square inch of my body to make sure the immunosuppressants have not yet given rise to skin cancers.  Yes. Staying alive is a full-time occupation. . . . flash:  I got a human being there. It was so easy, so nice.

Having an Unconventional Mind

I keep searching for a way to describe those of us who have the advantage of creative, unconventional minds. I don't like being categorized as "mentally ill."  This being me is not "illness," and in fact, in Zen practice we aspire to leave labels lying discarded by the side of the path and just be in reality (like a frog).

Some of us have body/minds that can perceive intensely and transform reality in highly individual ways, mind/bodies that feel deeply, that fire many impulses, that can get carried away into their own creativity or stuck in emotional states.  What if you don't call these tendencies "sick"?  The film "A Beautiful Mind" didn't do enough, in my opinion, to emphasize the beauty of Nash's gifted creative mind. (I read that it also falsified the story - he didn't have visual hallucinations.) But the term is useful. Not an ordinary mind or an ordered mind, not a dis-ordered mind - a special, interesting mind.

It is certainly also true that the term "mental illness" is a code for "has scared other people."  I've often read that there is really very little violence among the beautiful minds; that's a media fiction.  Horrible crimes are done by sane people.

Most of the time, what scares people about the beautiful is our unconventionality.  Like our close cousins, the monkeys or the wolves, humans have rigid social structures. There are big ones, like governments with their encompassing laws, and the little ones in which we live and move in our neighborhoods, churches, workplaces. You can call these patterns of unspoken laws our "culture."  In mine, for instance, it is weird not to shave your legs.  If you're a woman, that is - it's gender-specific.

Overall, these zillions of unwritten laws are about giving a group of monkeys a sense of security, predictability.  But they can get too tight for comfort.

To have a beautiful mind is to be noticeably individual and to break some of these rules.  Often we don't quite get it, don't know the rules. Maybe we detect reality better than rules.  I know I do.  Once, for instance, I wore some plaid flannel pants to a women's group I belonged to.  One woman made reference to my pajama bottoms.  Hmmm.  What made them pajama bottoms? The catalog called them pants.  They had cuffs - surely pajamas don't have cuffs.  I had to guess it was the flannel; my friend thought there was a rule, flannel was only for shirts, and pajamas.  It bemused me.

Quite recently I was tempted by a loose, pretty sort of shift I thought would be comfortable in the heat.  Then I noticed it was in the nightwear department.  Whoops.  Wearing a nightgown out of doors is the kind of thing that is called "inappropriate behavior" in the wards and hospitals that specialize in keeping Beautiful Minds from upsetting other people.


Where was I?  It is kind of fun to go with this seed-scattering mind just now.  It is certainly high summer, goof-off time.  Recognize that.  We are connected with this universe quite intimately.  Even in our air-conditioning, there is summer outside, the kind of bright energy that makes some of us (me) want to go into a cave in the Himalayas this time of year. Dim, cool, quiet.  Be careful about exciting things and places in this weather, especially be cautious with alcohol, which enhances the element of fire, the element that usually gets you in trouble.

About how we label our minds. First, a very important point - maybe the most important:  your mind is not a noun sitting there like Grandma's rag rug (though there are certain similarities). It is a verb.  It dances, it moves in certain patterns.  When you die and the life energy that held you together flows back out into the universe, your mind will mostly be gone, I think.  Its life is in activity.

In the industry they are talking a lot these days about plasticity, meaning your mind can learn and change even when you are (gasp) old.  Or when you're young.  That is what Buddhist meditation is about, exactly.  It is about letting your real mind come forth, so to speak, discarding the rigid outer layers of what to think and not to think.  A great relief.  It gets called enlightenment, but it's really not that special.

And my mind is reminding me forcefully that I have to go take 12 pills, drink some juice with powdered calcium in it, get dressed, contemplate the schedule which today has me going to argue with a kidney surgeon.  There goes another morning, wasted staying alive.  Damn.
~~~~~~~~~~~~
p.s. We waited two hours for the surgeon, but were calm, enjoyed the peace and quiet, conversed some, read a magazine.  Wasted time. The word is, When things are going well, the infections have stopped, you're not broken, so don't fix yourself.  So hey, wouldn't it be wonderful to go on for many years and never have another surgery?  Yes.

Healing with Music

the music
Exploring YouTube I came up with this.  After several starts, it was the one that went straight to my core, started me singing along and moving in rhythm.  Listening to music before breakfast is a new practice I have found energizes me.  I believe it is healing, too . . . thinking how it is a way of breathing, and how very human it is.
 
on the medical side
My friend is in the infusion lab right now getting chemotherapy.  I wrote to her about it.  I did infusion once for several days for iron stores "in the toilet."  There was nothing threatening, as there would be with cancer, no major side effects, and I enjoyed the rest and the peaceful atmosphere.  It also reminded me that everyone there was probably worse off than me.  I didn't know then how awful chronic kidney disease would become, that I would be facing death or dialysis - a more prolonged dying - by the time Laurie heard I needed a kidney.  I knew the iron would make me feel better.

The day I had to be on the drip 3 hours I took a book by Lama Surya Das, who is an easy read, and elected to be in a hospital bed instead of a chair, and enjoyed reading and breathing.  They even brought you a packed lunch if you wanted.  I felt pampered.  It is my nature to feel overloaded by my sense of responsibility, and being sick all these years I really can never get things done, so I sort of enjoy being tied down, even being in the hospital (for a short stay), having someone bring me food, choosing just what I want.  However, I do like normal life better.  Whatever normal is these days.  And there is no "normal," is there - that's just a statistical term.

Today promises to be my last IV dose of cefepime, with all its damn uncomfortable side effects, so maybe I'll have a week or so of wellness before the next UTI hits.  Have to work on getting a new kidney doc and examining this problem.  Meanwhile, "sufficient unto the day is the evil thereof."

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.

Things to do, and toxic begonia

Here's the gist of my e-mail this morning to Cindy:

Good morning.  Yes, we are nice and warm.
I have labs this morning at exactly 10:00, then stop at Riverside to pick up a CD of my latest CT scan to take to kidney-stone doctor on Friday.  Oh yes, need to order four med refills.  That's today's medical.
And maybe I will get at least some of that Xmas stuff cleared off the dining room table.
And a load of personal laundry done.
Meanwhile, it's possible Tom's sister is coming tomorrow for a couple of days.
And I have to do something about this blind cord Tasha finds so appealing.
Don't you hate it when you wake up with a long to do list circling you like a shark?
Thank you!!! for the shoveling.
lvu,
Jeanne
p.s.  And they are threatening to jail me if I don't return a stupid library book.

No wonder I haven't posted for so long. Or bought my new camera, yet (first I have to balance my checkbook, which I haven't done since the surgery).  So far, I haven't got any good pictures of Tasha-kitty, without flash -

or with flash:

This could be better, if I could learn Photoshop and take out that reflection of the flash.  I should know better.  She looks a little odd because her belly was shaved for her surgery.  And this doesn't show her silvery sheen.  It does show her willingness to walk on a 1-inch windowsill, giving no thought to what might be (or might have been) on that sill. 

And I should have taken a picture of the Wreck of the Begonia, a large, aged Angel-wings Begonia that was a gift, and which I loved.  When we realized she was stripping off the leaves, I looked it up, and begonias are one of many, many plants that are toxic to cats.  I had to kill the Angel-wings, nowhere to put it where she couldn't get to.  The three little ones - which I bought at Cat Welfare, BTW - I have moved to a crowded surface she does not get on.  So far.  We are watching.

I have started the camera research, narrowing it down to a Canon I can afford.  So I promise more pix, of her amazing eyes, green ringed with gold, of her star paws, of her new endeavor to climb up on my shoulder.

All in all, a good day.  I got done all the things I had to do and then some.  That laundry is dry about now.

My post-transplant nurse, Karen, told me that people don't usually feel well ("human," my word) for six to nine months.  I said, "They don't tell us that."

She said, "I know.  But I do.  That's why they don't want me in pre-transplant." 

But I actually do feel good today - my GP's nurse called to say the urine culture was negative, meaning, I am healed from the horrible UTI that manifested December 20.  Maybe I'll stay healed. Wouldn't that be nice?  But I don't count on it.  Believe me, every good day's - a real good day.

A new year, a new cat

Hello, especially to friends whose calls I haven't returned or whose e-mails are languishing in my inbox, along with 900 other items from 2010 I intend to go through. I have excuses, believe me. Illness - generally covered in my last post. In me, illness tends to be accompanied by depression; so do the holidays.

But maybe missing the holidays is worse. We still haven't had our Christmas with Cassie and company, don't even have the gifts wrapped. I missed the Christmas Eve service at church, still sick and on the wrong antibiotic. Missed the post-Christmas service too, busy throwing up with a kidney stone passing. But I wasn't wholly enthusiastic about attending these things, because post-transplant I am afraid of "church food," that wonderful reception that follows the Christmas Eve service, a hundred kinds of treats made in home kitchens and handled by many unsterile hands, and even by people harboring germs of colds, pneumonias, TB . . . it's true, folks.

But on New Year's Eve day, after I posted, desperation overcame my reasonable paranoia about zootropic disease, and went to Cat Welfare just to visit, to scout the kitties (as they are called there, though most of the cats are mature, and people only want kittens). Let them know what I was looking for. I thought I'd wear the mask I keep in my purse, but I tell you, I dropped it in the van and couldn't find it, not that it would be useful after that. And I thought, To hell with it. I'd rather be dead than feel like this.

And sure enough, petting a cat filled my chest with that baby-love feeling. And it seems possible that The Next Cat found me. In any case, I brought her home that afternoon - on warranty. A six-month-old girl, just fixed, looking much like a Russian Blue, maybe with bigger ears, and acting like a nervous Meezer once she was here.  She absolutely loves being petted, once you coax her near, and pick her up.  But inbetween pettings and knocking over plants, she acts like we are strangers, the menacing kind, and tears through the rooms, skidding on the wood floors when she reverses directions.  You have to admit, it's cute.

Nameless Cat is waiting for Laurie D. to come and suggest alternatives to Tami, the name the shelter gave her, and Amanda Starpaws, the name I came up with, which doesn't lend itself to calling and nicknames.  I am waiting and hoping NC will get over this nervous-cat thing.  I see now that years of old cats spoiled me; Sweetheart is still a kitten, very interested in the cords that dangle from the laptop in the den, and clearly exploring my bead table at night, selectively knocking things over.  Ah, yes.  A house is not a home without an animal as the heart.
[photo:  Rubber Duck Nativity.  Why not?  We take ourselves too seriously.  Some day I'll take a picture of my Buddha Cat and post it here.]