How to Watch Your Back

Here's the thing - pain medications are awful.  They don't eliminate the pain; they just move your brain away from it by putting down a soporific white fog.  But you really want them after, oh, abdominal surgery and childbirth.  Maybe you want them when you are dying.  And I wanted them after I fell a couple of weeks ago and compressed my poor T8, which has been giving me intimations of mortality for about 20 years.  I have not quite bird bones, but the long, thin bones characteristic of Airy poetical types.

There's that, and the slow bone erosion that comes with kidney failure.  And I hated to drink milk as a kid, hated it even when I was pregnant, and nutrition didn't get much attention in the press back then.  In short, I had bad karma.  Born with my father's bones instead of my mother's.  You can only do so much to protect yourself against your karma.  It's a real mistake to think otherwise.

My Good Doctor (a DO who does not himself do surgery, and therefore tells the truth about it) agreed with me that back surgery is a very bad idea in general, and on me in particular.  I am a Cranky Old Woman (I hear you thinking of the acronym for that) with a heart rhythm disorder and only one kidney.  I have to take  immune-suppressants, which make infection a real and present danger after any wounds, including surgery; and, of course, the best place to get an incurable infection is an American hospital.  You could google that.

In response to my pathetic condition, Good Doc prescribed Baclofen for the back pain.  It is prescribed for  spinal nerve pain, and it was serious back pain, augmented by the spasming in my neck from the fall. The disc was compressed by the fall, and I have some scoliosis in the lower spine anyway (maybe a mild, undiagnosed case of polio when I was a kid).  My back does not hurt at all in these situations:

• lying flat on a big heating pad in the afternoon and at bedtime
• lying curled fetally on my side to sleep
• sitting in the perfectly balanced upright posture they teach us in Zen
• cautiously lifting something light, using my legs 
• using one arm to wash my hair 
• doing 12 minutes (today) on the Nustep at the health club

Then there are things that make it hurt a lot:

• carrying over two pounds, such as my purse or an art book from the library*
• driving a car
• reaching up to clean the microwave
• some of my routine chi gong movements
• getting dinner plates out of the bottom of the dishwasher
• carrying more than one dinner plate to the table
• lifting my chin to watch HGTV while on the Nustep

~~~~~~~~~~~
* I gave a young man the opportunity to do a random act of kindness, and asked him carry it out to the van for me.  He was a little startled at the request, but seemed to enjoy it.
~~~~~~~~~~~
I know - you feel my pain (and Tom's, because he had to clean the microwave).  I feel my pain, too, again, because after a week on the Baclofen I was so confused I could hardly get my teeth brushed.  So, I quit it.  When I started on it, I had stopped the low dose of oxycodone I usually took at night, because sometimes pain from my torn rotator cuffs would keep me awake; I did not resume that.  It interferes with sleep, always a problem for bipolars.

So far, so good.  My system of digestion and elimination is glad to be rid of the opiates, and I love having a clearer mind.  The other advantage is that being alert to the pain helps me stay careful. And in a way, all of this is Zen.  A balancing act.

Warning: Major, Prolonged Whine.

 [images: my dining room, after Tom cleaned up some of the paperwork pertaining to his parents' finances.  And that's not even what I'm complaining about.]

Today air quality is "moderate," which translates to bad for people like me (elderly, and on immuno-suppressants).  Worse, weed pollen (ragweed, for example) is high and forecast to be VERY high the next two days, because it is not going to rain and tamp it down.  Mold activity outdoors is low, that's good, but it will soar if it rains.

What this means is that I can't go outside.  I can't sit on a porch or patio with a friend for half an hour.  I can't walk through the rose garden taking pictures, or go out in my own yard and mess around cleaning stuff up.  If I am outside in this weather, I get so much congestion that I develop the kind of ear ache that makes babies scream with pain.  Then I can't wear my right hearing aid, and have to use hot and cold compresses to get it to drain.  In case you're wondering, I hate that.  All of it.

I haven't meditated yet today - and I hate that.  But I got up late, and I hate that, but I hate waking up to alarm clocks, and I haven't been able to sleep until 2:00 a.m. for several days, despite the best pharmaceutical interventions.  And it's 3:00 pm now.  So I am going to stop this and, as we say in Zen, sit down and shut up.  I don't feel like doing that.   It takes discipline.

But before I go, I want to mention that I'm pushing water right now, meaning drinking down whole glasses, because I have to drink 4 liters a day to prevent bladder infections.  If you think that's nothing to whine about, do it for one day.  Go ahead.  And BTW, mine has to be room temperature water, not ice water, not water without ice from the ice water tap in the restaurant, which puts me into painful esophogeal spasms, just because I am old.  Go ahead, try to get simple room-temperature water in a restaurant.  You will learn, like me, that you just have to carry your own water.

However.  Water is one more thing to carry.  I have a torn rotator cuff on my right shoulder; the one on my left shoulder is relatively healed because I had to use it heavily when I broke my arm last fall in weather like this.  No, it does not have a good chance of being repaired, and PT was just making it too painful.

So if I am bringing in groceries and I carry a five-pound bag with each hand, and my purse with water in it, pain shoots down my right arm and up my neck on that side.  This is not my fault.  I have to carry stuff sometimes.  Tom is always willing to help, but he is handicapped.  He has to use a crutch to walk; that occupies his one good arm (he had polio).  He is not in a position to carry things.  So I carry what I think I can, or use my wheeled walker (from when I had bone edema in the left ankle, which still hurts every single moment of my life).

Before you offer me a solution, like get a neighbor to help carry groceries in, I want you to try it yourself.  Go ahead.  See what it takes to round up a neighbor, see how much time it takes.

If there's a point I'm making, it's that nobody knows the trouble I've seen, and therefore nobody should attempt to tell me how to solve the insoluble problems of old age.  Because, you know what?  I also have diminished capacity, because I'm old, and process slowly, and get tired, and can't figure things out.  And I'm in a bad mood right now because it's August, and this time of year I have depressed days that alternate with pissed-off days, because I am bipolar with SAD.  That's just my bad luck.  My good luck is that today I managed to shop and get in and out of Kroger's parking lot, which was all torn up, and not get in an accident. 

Contemplating chin lift while relaxing with a facial

Old age is one damn thing after another.  You are putting patches on a vehicle whose drive train is outmoded and whose transmission clanks and balks.  The tires are bald and can't be replaced, the hood is tied down with string, and at least one window doesn't work anymore.

In old age, a new problem doesn't mean an old problem got solved and went away.  It's just one more part going bad.  Oh, and yes:  Monday night I had what I am pretty sure was a gallbladder attack, characterized by intense pain and nausea.  I had one of these last year, and I've known a couple of people with gallbladder problems, so I recognize it.

You want me to go to the doctor about it, don't you?  You would.  But then, you might not be sick and tired of doctors who have nothing to suggest but one more surgery.  I hope you live long enough to have this tremendous growth opportunity.  If you do, all I can recommend is, cultivate your sense of humor.

Okay.  Now I'll meditate.
p.s.  I did, and it helped.

The Best Thing You Can Do For Your Health

Common snapdragon

And I just did it - I acted as my own doctor.

I don't mean the kinds of odd things we come up with that stand outside Western medicine, which is, generally speaking, based on science, on studies and lab results and radiology and chemistry.  I do plenty of things for my health outside that province, like oil of rosemary to perk up and eucalyptus to sleep, yogurt, apple cider vinegar and garlic and d-Mannose, and lately, wearing cotton on the advice of yoga teachers.  Four liters of water a day and various spiritual practices, including a church. And more that Western science is just catching on to, like singing, laughing, getting enough sleep, and making art.  And I have several doctors and take many prescribed pills on schedule and get blood draws.......you know.  Almost 70 here, basically you work on staying alive.

But what I'm rejoicing today about is a triumph of Western medicine.  Basically, getting established with a doctor I  can get in to see, and who will listen to me and, sometimes, go along with what I want.  Yes!

What I wanted from my kidney doctor was that he reassess the immunosuppressants I take to keep my body from rejecting the kidney Laura Brown gave me 20 months ago.  Why?  Because I can't spend five minutes outside without my allergies getting even worse than they are when I stay home in filtered air.  I figured that having my whole immune system suppressed might be behind this, though it's true that here in midwestern America we have had so much in bloom all the time this year that everyone's allergies are worse.  (What, you don't believe in climate change?)

I actually have two kidney docs, one at the research hospital that did the transplant and a private doctor.  They usually alternate, each one seeing me once a year.  But I thought the right one to talk to was my private-practice doctor, Dr. D.  He is that unusual thing, an extrovert who enjoys talking to patients and telling us what he knows.  He's just about the only guy left who does the hospital - there is a vogue now for something called a hospitalier who works there and never saw you before in his life.  So I waited a month to get in with Dr. D, and saw him this morning.

I do my best to look respectable when I visit a doctor, and to seem reasonable, though I do have orange shoelaces. And Tom goes with me.  Whether you like reality or not, they respect men a little bit more.  Tom testifies to my truth and helps me remember things.  I gave my pitch, and Dr. D quizzed me about other symptoms.  I hadn't complained about the GERD which has been constant since the transplant.  He knew about the multiple UTIs.  And I reminded him I am almost 70.  Said that before, didn't I?  "I'm an old lady," I said, without even blushing.  Because I know that, generally, it is good to lower doses as you age. 

He looked over his printouts on my labs, and talked a while about how there are some newer drugs than Rapamune, which a lot of people don't tolerate; and how stable I've been since the transplant.  He thought maybe my dose could be lowered.  He takes pains to work closely with the research docs, worked there once himself.  So he called that doctor and then called me.  Yes, the doctor called me himself, they can dial the phone it turns out, rather than having the message filter through a nurse or two.

I actually couldn't have implemented the changes they are prescribing without a new prescription.  And I wouldn't have done it on my own - kidney rejection could kill me.  They want a new blood draw after a week, and I would have wanted that if I'd thought to ask. The fact is, I need professional help to be my own doctor sometimes.  But this wouldn't have happened at all if I didn't pay attention to my body and act on its behalf; that's what being your own doctor means.
 
It turned out that Research Dr. agreed.  Lower the Rapamune and lower the Neoral a little, too.  He told Dr. D, "I didn't realize how old she was."  Of course I am way too cool to be grinning as I write that. 

Life is not fair, but you knew that

Well, I thought I would comment on how my Spring form-new-habits project is going. 

Getting back into meditating every morning has been easier than I expected. It reminded me of the power a habit has, which is why I never smoke "just one" cigarette.  (Quit in 1988, and it wasn't easy.)

Hanging up my clothes at night - pretty good. I've tended to forget, maybe even get into bed and then see them draped over the hamper, waiting to be hung up, and say Uh-oh.  Last night I had a lapse, a sort of binge of not hanging up clothes.  I'd had one of those really bad days, from start to finish, and was feeling a little wild at bedtime, but I'm glad to say, got to sleep.

So, about that day.  I had signed up several weeks ago for a two-hour workshop on decorating eggs Ukranian style, taught by a church friend.  Right away I was in trouble, because I had to get up with an alarm clock at 8:00 to leave the house by 9:15.  I don't really know what I did in that time, coffee, dress, eat an energy bar, take a million pills, but I didn't meditate.

Pysanky is an intricate, beautiful traditional art - you can see examples here.  That's what the instructor's eggs were like. We were warned that our first eggs weren't going to look like that.  Actually, the people around me at the table were absorbed in doing some nice-looking things, and nobody else wanted to ever leave, I guess.  But I learned something:  I have a tremor.

It's just a small tremor.  I'd noticed that my handwriting isn't pretty, a bit jerky, but thought it was arthritis, because my hands do hurt when I write a few sentences.  No, it is enough of a tremor to make drawing with hot wax on a curved surface impossible.  So my two attempts came out like this -

 That stick is what you use to do this - the blackened head is copper, you hold it in your candle flame, stab stab your beeswax, draw.  Then you do a resist process, like batik.  You note that the egg on the left is signed and dated by me, as suggested, so future generations would know who did it. Yes, that says 2012.  See what I mean?  The egg on the right is broken because as I was working on it after the first dye, I dropped it.  This happens.

The photographers among you may notice that I have messed with these photos, since I have the use of special effects with Picasa just for two more weeks (an editor that came with my phone).  In other words, I made them look as good as I could.

The farther you get from these eggs, the better they look, so here.

The teacher is very experienced, and complimented the beautiful russet I got on the left-hand egg by following a pale yellow dye with brown.  That egg  was actually covered with horrible scrawls - here you see the bottom, its best view.  And the mottled effect of the pink, which happened because I didn't prepare the eggs with vinegar the night before, as suggested, though not required.

I think I sound light-hearted about this, but I did not feel that way when I left the workshop - first one to leave, too. I just felt down. I was thinking some good thoughts, how I've been satisfying myself artistically with photography and collage, how good this is, because I don't know now whether I can paint or draw. I am usually steady enough with the camera, and collage is forgiving.  But I had a new fact about my body, and it's likely it's a side effect of the Rapamune I take - these immunosuppressants have big side effects.  Nobody takes them unless they have to.

Just two days before this, I got a diagnosis of chronic gout in my left big toe, which hurts right now. It always hurts, and the more I walk, the worse it feels.  I feel like I should get a break, one new ailment a week.  But it doesn't work that way, does it?

And that's why I didn't hang up my clothes last night. 

Of course I feel better today, loved church, cried during the anthem, wrote a poem about all this.  And did meditate before I went.

How I learned to stop worrying

Mandala

 

I think the artistic creation above is more attractive than a photo of my ankles, so you will have to imagine my peripheral edema.  Peripheral means on the outskirts of your body, usually your lower legs, as they sort of hang down all day, which encourages fluid to accumulate in them.  Edema is the visible swelling caused by that fluid.  I only make a point of this because I know many of you have a grandma in your life who has to go to the store in bedroom slippers, and you don't understand it.

Here's the thing:  it's not good when both ankles swell, but when just one is swollen, everyone worries.  So several weeks ago we saw my primary care doctor about it - this was on a Thursday - and he scheduled the soonest possible ultrasound, the next Monday, to rule out blood clots.  You really don't want a blood clot to form and travel to your heart or lungs.

But Friday night we noticed how bad the ankle looked, and Tom called our doctor's clinic about it, hoping for reassurance.  But the doctor on call said, of course we should go right to the ER and get it scanned, and not end up suing them for negligence. 

So we did, and this is getting to be a long story.  So I will skip the part about how they shut the ultrasound down at night and those people go home, so it was spend the night in the ER, having many other stupid tests done.  And finally the scan in the morning, and finally they said it was just fine.  I did not have a blood clot.

I'm trying to wind my way to now, several weeks later. We went back to primary care doc yesterday, because the damn swelling hadn't gone down, and I also suspected another UTI.  And this led to a thorough review of all the stupid tests done in the ER, which are right there on his laptop (!).  Blood draws, liver, kidney, and so on.  And everything looks fine.  This was a huge relief to us.  Nobody had told us to see him for a follow-through. This is modern American medicine at its best, unless you are very rich.

He explained that with age the arteries and veins can grow slack, and edema happens.  We could see a vascular specialist, but it was clear enough that the only thing that would accomplish would be to assure us further that nothing was wrong.  I should wear my compression stockings.

But most interesting, he had gone to some computer program with the extensive list of my medications, and returned with three pages detailing which meds are most likely to cause - guess what - peripheral edema.  When a doctor does things like this, you don't mind if he's wearing bespoke pants and Italian leather shoes.

And guess what?  One of the immunosuppressants (Rapamune) is a HUGE culprit in this, causing it in over 50% of the poor transplant patients who have to take it.  And furthermore, it commonly, their word, causes half a dozen other things, some of which I don't have yet, like headaches (but I'm thinking about it).  Nobody tells you these things.

You may have come to this post hoping I had a clue about how not to worry.  In a way, it's implicit in the story.  Identify the problem, take steps, get information, don't push it away.  It is easier to face your worries when you meditate; in fact, it is impossible not to, eventually.  Sometimes it's when the anxieties start to break through the bliss that people drop the practice.  But that's when it's started working.

[The image is me having fun with a recent photograph.  Now we're down to it - you can do so much with photography, the only reason to paint or draw is that you enjoy the feel and smell of the materials.  Which is a good reason, after all.]

The saddest thing I ever read

I want to adopt a cat
I take a lot of peels that make my immune system very weak
So I get sick very easily
My mom said that I should not have a cat because it might be easy for me to get diseases from it.
It their really such a danger with cats
They don’t look like a disease caring animal.

This is from a site called lookfordiagnosis.com.  The answer is, yes, there are significant diseases you can get, but owning a pet lowers the blood pressure and so on.  Ask your doctor (as if he cares about your quality of life).

I felt so sorry for the child who wrote this, I can't tell when or how old s/he is.  I "take a lot of peels" too, and after Sheba died I decided not to get another cat until I see the great surgeon next Monday for my three-month checkup and, I hope, he lowers my immunosuppressants, which are making me anemic and liable to infections, and giving me a chronic headache.  But these past weeks have been so bad, I will start searching for a cat whatever he says.  Maybe I'll go to Cat Welfare today or over the weekend - unlike the gods of medicine, they don't close down for holidays. That leads me to the -

part you don't want to read if you read this blog for inspiration
(I have been sick since before Christmas, and no help anywhere, including the OSU ER, where they had me on the wrong antibiotic for six days until someone got back to work and took a look at my urine culture.  But by then I'd been to another ER for huge pain, which turned out to be kidney stones passing.  There they admitted me, got it right, and discovered I had no iron stores - another medical mistake.  My hemoglobin is 8 - you'd be depressed with that even if you weren't depressed.)

Back to cats.  Many transplant patients wrote to tell me they would never do without their pets.  If you have a cat, you are supposed to wear a face mask and gloves to scrape the litter box, I can live with that; but you are told to wash or sterilize your hands every time you pet them.  Please, give me a break.  What I will do is take the potential companion to my vet before adoption, not after, and ask for a very thorough exam.  And once I have a cat, I'll try not to touch my face or eat without cleaning my hands.

Our beloved cat Sheba died suddenly Nov. 6, three weeks after my transplant, apparently of simple old age.  I was so torn up by this I couldn't even tell my friends about it for weeks, except those who routinely asked how she was.  I felt like that sweet, affectionate cat was holding my life together with her insistence on our routines, her willingness to oblige, her love of being petted.  How she liked to fall asleep beside me with her chin on my hand while I read in bed.  How she was there whenever I came in the house.  We'd made her very happy by adopting her.

So that's that.  A horrible holiday season.  But I am better off than the child who wrote the above, who has God knows what illness that requires a lot of immunosuppressants.  Could be transplant, could be something worse.  And the poor kid does not get to make her own decision about a pet.  That's the awful thing about being a child, that helplessness.

I had one good room-mate in the hospital earlier this week - a 75-year-old woman with spinal stenosis causing terrific back pain. As her doctor explained to her, anything that impacts pain is a narcotic and will affect your brain (and constipate you, too).  I can testify to that - on Percocet all I wanted to do was lie on the couch with my back to the world.  I was soon willing to endure a certain amount of pain and just take Tylenol instead (careful not to overdose and harm my liver). 

Yes, there is always something to be grateful for, and I really am grateful that years of Zen meditation and retreats have taught me how to endure a certain level of pain.  When it comes to pain, you are much better off when you can accept a certain amount of it rather than being a nonperson on heavy meds.

My room-mate and I got to talking about it, and I remembered another room-mate I had a long time ago.  She'd had both feet amputated, diabetes, and just groaned all the time.  We agreed that you never have to look far to find someone worse off than you.  I wasn't looking for someone worse off this morning, was looking at zootropic diseases, but came across this child.  I hope her mom let her get a kitten, never mind the risks.  It will give her something to love and to live for.