My Body Talks Too Loud

This afternoon I had to get out and see someplace that wasn’t the inside of the van I live in.

It’s been in the 40’s and 50’s here in Northern Arizona.  Very beautiful, too, when not spitting “wintry mix.”  Still not terribly comfortable for those of us with loud bodies.

To be truthful, I’m sick and tired of this body.  I’m grateful for what it’s done for me, carrying me around my life, into and out of some truly wonderful and outrageous and sometimes horrifying adventures.  I love that it carried me on horseback all over the place, allowed me to throw it down mountains on skiis, glided me through water salt and sweet.  It grew me a baby 32 years ago, and then fed and nurtured that baby, who is now his own human being with his own life.

I feel as if I’m saying goodbye to that nice body, the one that danced and played music night after night after night after dizzy exhausting night.

That body is, for all intents and purposes, gone.  That body, the one that I knew I had because it felt so fucking amazing lifting weights, powering up mountains, inching along rock ledges, is changed for one I can’t ignore, for entirely different reasons.

This new body tingles and buzzes.  Sometimes it bangs on pots and pans, other times it feels like zippers zipping up and down my arms.  Reaching for an object gets me electric shocks.  


My previous body had pain. Lots of pain, most of the time, in fact.  But as long as it still worked, carried me around, worked its way into the asanas I loved, I put up with the pain. As long as there was that confidence that if I kept on putting one foot in front of the other, I’d reach my goal, no matter how distant–the pain served as evidence of my progress.

There have been times when the pain put a stop to my activity.  I’ve had stretches of months at a time when simply getting out of bed took half a day’s energy, and getting back in took the other half.  This is discouraging.  But I’ve always pulled out of those nosedives, got back in the saddle and rode away.

Not this time.  

The bones in my neck are getting worn down because of ligamentous laxity.  I love that term, don’t you?  Say it a few times.  It’s fun!

Actually it’s not fun.  When your ligaments get over-stretched and no longer hold your bones in place, the bones slip around and rub against each other.  The cartilage wears off.  Bones grate against bones.

It’s not quite so awful if it’s one or two bones that are loose, but if you have a whole spine full of them, you have a problem.  I have that problem.

It’s not just my cartilage that is crumbling, either.  My muscles seem to have jumped into the act.  I’m nursing multiple rotator cuff tears, in both shoulders.  I have tendons that are shredding.  Ligaments, too, are becoming frayed.

We know this because of MRI information.  We also know this because my recent hand surgery revealed tissue damage that has been going on for decades, a representation in my wrist of the destruction in my whole body.

Of course now the nerves have come on board.  They buzz, they vibrate, they pinch, they stab.  They ache.

Something in my neck has changed for the worse, so I made an appointment with a local spine surgeon who I’ve seen in the past.  Unfortunately for me, he retired at the end of the year, so I saw his successor: a nice young man, full of algorithms and theory but not much experience.

“When did this start?”  His opener.

“In 1983.”  I felt myself slip away into dissociation.  

“Oh, but this time.  Did it start yesterday?”

Patience, Laura.  It’s not his fault he doesn’t know you.

“I have a genetic defect of collagen structure.”  I gave him a quick rundown of my history of spontaneous dislocations, spinal badness, surgery, injections, etc.  His eyes glazed over.

Fortunately, I collect CDs of all my MRIs, and they were on his computer already.  We aborted the attempt at oral history and just looked at the pictures.

Oh look, he says, you have at least three unstable levels in your neck.

Yes, I nodded (not much of a nod, because I can’t look up because my neck is stuck that way).  And something has very much changed, and that’s why I’m here.

And luckily, when the nitwits at the Cleveland Clinic did the Whole Nervous System 3 hour long MRI looking for MS, they used contrast, which showed the benign tumors that are inhabiting my vertebrae.

Did the New Guy think that hemangiomas (benign tumors made of blood vessels) would be a problem for surgery?

Certainly, he said.  But if you have a collagen problem, that alone might contraindicate surgery.

Yeah, I kind of thought so, I mumbled.

There must have been something on the floor, because we both stared at it for an awkward interval.

Well…he fidgeted with his cuticle…I guess the first thing is to get a new MRI.  Make an appointment to review it with me.

The MRI is in a couple of days.  Then I’ll get the news: something I can live with till the next thing?  Something that’s going to cause further damage unless fixed?

Right.  I’ve already had that opinion.  In fact, I’ve had three separate opinions, from three separate spine centers, that all say the same thing: no surgery, not much life left.

I’m feeling like a box of cereal that’s past its expiration date.  Stale.  Crumbling.

And sooner than later, full of worms.

Bloody Hell.

It started up again last night.  My guts have been low-grade bleeding for…a long time.  It’s become kind of a fact of life.  I’ve come to accept it.  I do get mad that it wrecks my RV holding tank sensors, so I can’t tell how full the tank is.  I have my work-arounds for that, but still.

I get frustrated that I have absolutely no energy to do the things I love doing: hiking, dancing (my spine gets in the way of that too), dog sports, or anything that requires being up and around and away from a toilet for more than an hour.  Shopping leaves me exhausted for days.  I put off going out until I’m out of absolutely everything.

Apart from my holding tank sensors, the part I resent most is my hair.  It’s falling out.  I’ve got a bald spot in front, right above my hairline.  I really should see someone about this, but I’m just so damned tired.

Last evening just about sundown I went to take a crap, and whaddyaknow, a big blob of bloody mucus came out.  Ugh.  Well, thought I, I hope that’s the end of that!

It wasn’t.  

True that even a teaspoon of blood looks like a lot when it’s on toilet paper.  It is quite the shock.  

My first impulse with things like that is to find some alternate explanation.  Toddlers, for example, often ended up in my office, accompanied by a red diaper and a panic-stricken parent.  Most of the time the culprit was that awful red dye they put in Jello and “red” Koolaid.  Excellent teaching opportunity: don’t feed your kids anything you don’t want to see in their diaper!  Beets will also cause red diapers, but not as shocking.

I have eaten nothing red of late.  Not beets, or red Jello, or even the lovely rare steak I’ve been plotting to burn on the grill.

There’s a bit of dullish pain in my gut, nothing I can’t ignore; and a characteristic tinkling bowel sound that only occurs when I bleed.  I once recorded it to play for a doctor, but erased it after my last horror show encounter with the bozos they now call “physicians.”  I can’t wait for the robot docs.  At least they will hopefully be more objective.

When I started getting frank blood coming out of my poor ass, I considered packing up and heading for the local ER.  Then I considered what would happen.  Procedures.  Possibly admission.  A tube in my nose.  Antibiotics.  Colonoscopy.

You know what?  I’ve been there and done that.  My body can’t tolerate the steroids they shove at me.  I don’t want to get C. Diff.  In fact, I want nothing to do with the medical establishment.  At all.

I had plans for today: there is a knitting club at the RV park where I’m staying.  I wanted to pick the brains of the people who actually know what they’re doing.  I’m too damned tired.  I don’t seem to have bled enough acutely to bring my hemoglobin down, but I didn’t have to take my blood pressure pill this morning.

I’m tired.  I’m grieving the loss of my son.  I’m grieving the fact that I never had a real mother, even though I tried desperately to make her into one in my mind.  I feel like I lost my family in a fire.  But they’re still alive.  

Susan Sontag’s book Illness As Metaphor has provided me with a paradigm in which to understand my in illnesses, but not the one she herself offers.  Sontag was more about the way society stigmatizes  certain illnesses.  To my way of thinking, my illnesses are loud metaphors for my inner ecological disasters.

Bleeding Guts= I’m torn up inside

Asthma= I’m suffocated by the people and circumstances I live with

Spine disease= no support

Bipolar= No stability

Etc.

In case you’re wondering, I’ve worked with these metaphors for decades, trying to find some modicum of healing in therapy, NLP, hypnotherapy, support groups, even witchcraft!  I went to India to work with an Ayurvedic guru.  I’ve worked with healers from every continent on the globe.  

And although I can say that the metaphors do help in terms of putting sets of symptoms into a context, I cannot say that I’ve derived one iota of benefit from all this omphalospection.

If not for the Biggess Doggess, I would certainly pack it in.  It seems odd that I would stay alive and suffer for a wolfish beastie.  Somehow I just can’t let her down.  She has been through so much!  A victim of trafficking, quite literally, used and thrown away.  With love and care, she’s flourishing.  I can’t bear the thought of her going through any more trauma.  She totally freaks if I leave her sight.  I’ve committed to staying alive as long as she lives, if I can.  

We’ll just have to see what happens.

Gut Shot

If you’ve watched a few Westerns, you’ve probably seen some poor bastard shot in the abdomen by a Bad Guy and left to die a slow and miserable death.  He’s been “gut shot!”  It’s a low down dirty trick.

Sunday morning I struggled out and in and back out of a hazy nightmare.  I had been gut shot, and I was dying alone in the desert, far from water or morphine.  Plus which, the bad guy had tied my hands to a stake above my head, and my feet likewise.  I couldn’t even writhe properly!

As I surfaced from the dream, I tried to move and found I couldn’t.  My abdominal cavity was a simmering cauldron of deep ache.  Some lousy sonovabitch gut shot me!  Not the first time, either.  If I can ever manage to catch the motherfucker who does this, I’ll…I’ll call Marshall Dillon, that’s what!

Saturday turned out to be a sick day instead of the quiet restful Sabbath I had planned.  The special food and the bottle of wine remained untouched, while the special RV toilet paper dwindled on the roll.  It wasn’t an unusual sick day.  Not even much in the way of blood or other nastiness.  Just sick in the typical way, for me.

So I was caught off guard by the gut shot deal.  (Yeah, right, do I ever get any warning?  No.)  It lasted fucking forever.  I couldn’t even think straight enough to remember my treasured stash of tramadol.  Hell, even had I remembered it, I wouldn’t have been capable of rolling over, sitting up, standing up, and walking to the cabinet to fetch it.  I was gut shot.

It was good that the pain woke me at dawn.  That gave me plenty of time to lie there in bloody hell agony contemplating how I was going to manage to get my sorry ass to North Carolina in order to register my new RV before the dealer tags wear off.

About 11 o’clock I had to haul out of bed to walk and feed my patient dog.  She had crept silently and gently into my bed, knowing I was in trouble and careful not to jostle me.  I don’t know how she knows these things.  She just does.  She stretched herself out alongside me like a giant heating pad.  It was very comforting, while I was tied hand and foot, shot in the gut, to have a giant heating pad.

So that was yesterday morning.  I got on my way a bit after noon, and drove a few hours before finding a place to rest.  I dosed myself up with my special “tummy drops,” drank a glass of kefir with lactase, fed and walked Miss Dog, gave both of us our pills, and hit the rack.  This morning was early and weary, but at least not painful.

I chose a route that took me through a lovely part of Ohio, passing through familiar towns in the hilly country approaching the Ohio River Valley.  I have lived quite a few years in Ohio, and have some fond memories of baling hay in the Dog Days of summer, finding new ways to cook the extremely prolific patty pan squash that invaded my garden, and losing our trampoline to a tornado that wandered through our front yard, only to have it returned, somewhat the worse for wear, by a farmer who lived a few miles down the road, who found it in his field as he was out with the combine.

I couldn’t resist doing at a farm stand that offered fresh-picked sweet corn and other veggies.  I steamed up a couple of ears, buttered and salted them, and crunched into the Kandy Korn kernels with relish (not pickles, just relish), all the while squelching that annoying little voice that whispered, “Laura!  Laura, do you think this is the wise thing to do, so soon after having been gut shot?”

Oh little voice, do fuck off!  I need to enjoy my Ohio corn fix, since I didn’t go through Illinois this trip for that most toothsome of sweet corns: Illini Super Sweet (pronounced: ill-EYE-nye, named for the University of Illinois football team, developed by the agricultural college) (and since the University of Illinois is one of my Almas Mater, I have eaten at least one ton of Illini Super Sweet).  So at least let me enjoy my fresh-picked (not exactly today, but it was certainly fresh-picked some time ago) Ohio Kandy Korn, and I won’t do it again for a long, long time.

Just to round out the dietary indiscretions, I bought a lovely ripe tomato that was winking at me.  Oh, how I love a good ripe ‘mater with salt and sushi vinegar on it!  Alas, it was the agent of my discovery of the latest episode of…aphthous ulcer mouth badness!  Ugh.  In the garbage with the lovely ripe ‘mater.

Just so I don’t wake up sick or gut shot tomorrow, OK?  I won’t eat the green beans either.  Whoever thought that “eating your veggies” could make you sick?

Oh, No, Not Again!

So my very good friend met this guy, and he thought that this guy and I might like to be in touch, because this guy and I have some things in common, and all this and that.

So I said fine, tell him he can call me, but if you think you’re matchmaking, well, don’t.  He said he didn’t.  Emphatically.

The guy calls.  He seems nice.  He seems interesting.  We do have stuff in common, and we jabber away for a couple of hours.

Now, this guy doesn’t use computers.  He has a smartphone, but no idea how to use it.  So no exchanges of ideas beyond voice calling.  And he lives far away.  And although he has a camper, he’s not so much into traveling.

Fine, no problem.  I’m not in the market.  I can’t even have sex due to the physical ravages of chronic illness, so even considering a regular relationship is silly.  Thankfully, my sex drive drove off without me some years back, so it’s just not an issue.  And even more thankfully, I’m not lonely.  The opposite: I can’t stand people in my space for long periods of time.  Like, for instance, five minutes would be too long.  I would like to have a friend who actually wants to know me, not a lover who only wants to know my booty.

So a few days ago we have our third phone conversation.

He gets right down to it:

“Where do we stand?  I need to know.”

I explained to him all of the above.  I told him that I’m totally up for meetings along the trail, circling up of wagons (Wild West reference, for you who were not raised on Spaghetti Westerns), serenading the coyotes, and other friendly activities.

Just.  Not.  Sex.  OK?

Judging by his chilly tone of voice, it seemed probable that it was not OK.

You know what?

I don’t give a shit.

Miss Biggess Doggess Has A New Toy!

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Flagstaff loves me.  The ball of yarn keeps getting bigger and bigger: that is to say, I am becoming more and more deeply involved with the workings of this tiny city that perches on the Coconino Plateau, at 7,000 feet above sea level, nestled among a flock of young volcanoes.

After my thirty-first medical provider visit this month, I was overcome by a sensation that something was lacking.

For one thing, I was drained to the tips of my finger and toenails from my appointment with the new Family Practice Nurse Practitioner.  I hate to think how drained she must have felt!

The purpose of this appointment was allegedly to seek a solution to my stubborn high blood pressure.  High blood pressure is bad.  It damages one’s kidneys, causes strokes and heart damage, eye damage, and basically messes you up, usually without any symptoms at all.

Having symptoms, like headaches and blurred vision, means the high blood pressure is getting to one’s brain.

God knows, I don’t need any more brain damage, so when I realized that my permanent headache and inability to read the Louis L’Amour paperback borrowed from the campground laundry room because my vision was blurry might just be high blood pressure symptoms, I went to the Walgreens and bought a fancy blood pressure machine.

The first time I tried it out, the damn thing read 165/106 (normal is about 120/75).  I ran it a couple more times and it said approximately the same thing.  I didn’t like that at all, so after a couple of hours on the phone I got the soonest primary care appointment available, which was two weeks away.  In between times I did all the things one is supposed to do to lower blood pressure, like exercise, breathing, meditation, cuddling with one’s Doggess, and fiddling with medication doses.  And hoping like hell that nothing bad would happen.

Last night my BP was dangerously high, so I took a rather large dose of my medication (don’t try this unless you’re medically qualified), and my usual dose this morning.  My BP in the office was perfectly normal, so of course I felt like a fool.

To make matters worse, I disclosed all of my psychiatric diagnoses and their respective meditations, and the NP completely unraveled.  Poor thing, who can blame her?

To her credit, she did a great job of picking out a team of specialists to help figure out what in the hell is wrong with my immune system and nervous system and skin, and whether all these are part of the same problem, or whether they are separate problems.  As for my blood pressure, she told me to keep doing whatever I did to bring it down, and gave me a script for more of that particular medicine.

Driving back from that exhausting appointment, I spied a grocery-store-cum-gas-station I’d seen before but never stopped at, because it looked down-at-heel and sad, like one of those discount groceries that appear and disappear in a matter of days like mushrooms after a good rain.  Today I needed gas, though, and the price was right, so I waited in line till a pump opened up.

After filling my gas tank, my mind returned to my own stomach.  The grocery had a Starbucks logo on the wall.  Hmmm, a green tea soy latte might perk me up!  I went in.

Have you ever had the experience of going into a drab, shabby building, and finding the inside bright, beautiful, and full of your favorite fresh fruits, veggies, and gluten free foods?  Heaven.  I got my green tea soy latte and headed for the aisles.

Half an hour into the orgy I came to the pet stuff aisle and was struck by a largish wave of guilt, since Atina had spent most of her day in the van, while I was enjoying my medical appointment and now shopping my heart out; therefore, I sprung for the $8 on sale “un-stuffed” furry critter with a squeaker at its head and tail.

I paid for my order (Jeezus Kreezus, $120 for those few things?  And this isn’t even Whole Foods!) and hauled my cart out to the van with my one good hand.  Atina glared at me from her spot on the bed.  She had good reason to be sick of being locked up!

The moment I cut the tag off the new Critter and threw it at her, all was forgotten.

She caught it.  It squeaked!  Just like the squirrels that taunt her all day around here would do if she could ever get her pearly whites on one!

Since then, the Critter has been relentlessly shaken, chewed, squeaked (my ears, my head!), and is sodden with Doggess spit.  Now she sleeps, worn out with worrying the new Critter to death.

The best $8 I’ve ever spent.

I am sick of this.

This morning I woke up and stretched out my right hand, and it started shaking as if I were being electrocuted.   No kidding.  I was scared to death.  I drew my hand back under the covers, thinking maybe I had slept on it wrong, except it didn’t feel numb or tingly.  Then I tried it again: I stretched my hand out as if to grab something, and my hand is shaking like a leaf in the wind.  OMG, WTF.  What now?

I have been struggling with a major depression for the past couple of weeks.  I don’t know what happens to my days.  I have all this stuff to do, and none of it gets done.  The bills aren’t paid; I can see them from here, still in their envelopes on the dusty old wire spool that would serve me for a coffee table if I would clear off the propane lantern, the iron, the scrub brush, the pile of catalogs I will never look at, miscellaneous empty jars that I can’t bring myself to throw out/recycle for a variety of lame reasons, and oh yes, the bills.

Part of this depression probably stems from the short days.  I haven’t been able to haul myself out of bed in the morning; I am not a morning person to begin with; my mornings usually begin at eight.  Lately I’m lucky to drag myself out of the rack by ten.  If I let myself, I’d sleep all day.  I really meant, the short days this time of year; but yes, my days are that much shorter because I can’t get out of bed.

Oh, and my attention span has been downgraded from “flea” to “gnat.”

I texted my psychiatrist about the tremor and the depression.  He prefers texting.  I also left him a phone message, because he has his own attention issues and I’ve learned over the twelve years that we’ve been doing this thing together that it’s best to hit him with two different message modes.

He called me after his work day, as I expected he would.  I explained the situation.

“What do you think is the problem?” he asked, as he always does.

“I don’t KNOW what the problem is!” I groan, exasperated.  He always does this.

Then he started going through my meds with a fine tooth comb.  Half an hour later, his feeling was that for some reason, my nervous system just isn’t tolerating the combination of lithium and lamotrigine.  But, since I’m depressed, I can’t take a break from either of them; in fact, I have to increase the lamotrigine by 50 mg.  If I want to, I can take some Propranolol for the tremor.  It’s a beta blocker, lowers blood pressure and gets rid of tremors.

But oh, no, not me, I can’t take Propranolol because I have asthma.  The same mechanism that lowers heart rate and blood pressure can also trigger a fatal asthma attack in susceptible individuals: that would be me.  And even in my depressed state, where ceasing to exist looks pretty good, suffocating to death is not my choice of exit strategies.

My shrink likes me to take an active role in my medication management.  That is why he gives me such a pain in my ass every time I call him for advice.  He is certainly capable of simply telling me what to do; but since I have a chronic illness, he prefers that I engage with the process of disease management.

Frankly, I would prefer it if he just said, “Take more of this, take less of that, try this other thing,” because then I could just go on ahead and not think about the fact that I have this disease, and it is not going to just go **poof** and disappear.

No, I will not wake up normal one morning.  This is a life sentence, without possibility of parole.