"but oh, that magic feeling, nowhere to go..."

i'm boring you with another repost of the past glorious because... the title song has been circling 'round my cerebral marquee all day, being the song to which i woke.  yes, the irony -- and you know the irony rule.  

no, not "irony rules!" -- jeez.

rather: "share the irony!" -- duh.

originally published 28 february 2011, just prior to beginning ketamine subanesthetic infusions. "oh, that magic feeling, nowhere to go..." i must have had some foreboding of the proverbial k-hole to come.

I have decided not to be ashamed of my behavior today.  There's nothing to be gained from such shame.

Honestly, the reasons for my outbursts aren't clear, even to me.  Stress, pain, blahblah?  It's likely that I've maxed those accounts out long ago.  There is no further purchase to be had from tired woes.

It started in the elevator, as these things do.

Giggle.

No, it started promptly at 4 am -- as Fred came to bed, I rose.  Sleep hadn't put in an appearance, though I had drifted near a nightmare.  I have had nightmares for the last four or five nights -- real ones, the kind that leave you dripping with sweat, heart pounding, images runningdancingjumping left-to-right and back, fast.  My response is automatic, as much an echo as the dying scream I imagine hearing fade through the cracked bedroom door, slipping quickly around the corner into my office and hiding, crouching behind the freeform green rocking chair that Fred once said frightened him.  ("Can we get rid of that rocker?  It scares me.") (I am still so very sorry to have laughed.  He was very serious.)

The first night of mares had me shouting "I don't know where I am!" --
The second night, I queried, "What is that?" (pointing to a shadow on the ceiling)
The third night I don't remember any words, just a bunch o'guttural goo and a whistle.
Last night -- emphasis on speed -- "I-don't-think-so-I-don't-think-so..." (wherever I was, I was lost)

There's a theme.  It's facile.  Boring, even.

It's the first week off of antibiotics in a month and darned if I don't think these things are related to a resurgence of those feisty bone-smacking bacteria sorts, those pestilent punks.

So, anyway, restorative sleep continues to be a mythic thing.  As Fred faded, I shifted gears and pretended the things I did in that darkling time were important.  The kibble bowls needed scrubbing, the rosemary trimming, online bills scheduling, biscuits a gentle touch -- Nephews needed birthday checks, brothers an unexpected kind word, strange and cancered children prayers.

I finally got myself a Laughing Buddha -- it's been a lifelong desire -- and I do not fail to rub His Belly in these chiaroscuro mornings.  Dobby the Runt Cat rides my lap, leaning into the wind kicked up by this speeding wheelchair, nose raised to the unknown, looking like nothing so much as a faithful dog.  He goes eyeball-to-eyeball with the smiling Buddha and does not blink first.  He's a remarkable cat and loves these early hours.

By the way, if anyone knows how to train a cat to modulate his voice... I need suggestions.  Dobby has adopted a permanent scream that is grating, that flails strips of inner ear and takes tiny melon balls of brain matter... It's truly awful and we don't know exactly when or why it began.  He wants something, desperately, but after checking on hunger and thirst, general comfort, humidity levels, belly rubs and fanny whacks, and yes, even laser lights, we are left with what we had -- a cat that levels an intensely meaningful gaze within a strangely wizened little face, then screams.

I wanted Fred to sleep as long as possible before we had to head out for my ophthalmologist's office, a good 40 minutes of Tête de Hergé highway away. 

Two weeks ago, I reintroduced myself to the good EyeMan, I, the errant glaucoma patient having gone missing due to distraction and a lack of insurance.  Nonetheless, I kept up the eyedrop regime and kind of enjoyed the respite from appointment upon appointment. 

Of course, I was also losing vision, a distressing thing.  It turned out I have cataracts in both eyes and -- much more importantly -- out of control eye pressures, despite the medication.

So he fiddled with the eyedrop prescription and had me back today for a visual field test and another pressure check. 

To get there, of course, we rode in red, red Ruby.
As he and his colleagues are hunkered down on the eighth floor, we took the elevator up.
I don't often board elevators that are full, preferring not to risk being touched.  You'd be amazed at the number of people who think a wheelchair is an invitation to pat a shoulder (oy! always the shoulder!) or to reach down to my sorry knobby knee, all the while speaking to whomever serves as that day's Gimp Escort, because the person in the chair could not possibly have higher brain function.

But I did today.  Get on a crowded elevator -- in case you lost track of the relevant antecedent.

And sat staring into what amounted to a huge mirror as we stopped on every floor.

It wasn't that I did not recognize myself.  I'd know those small, beady, darting eyes anywhere.

But... what happened?  Where did my face go?  When was I smushed down, squashed, and caricatured as an unfinished lumpy dough, resting between rises?  Cast blame on steroids, on a cushingoid effect, on collapsing joints and bones, on a lack of regular tennis and even fewer occasions for a morning run.

So, of course, right there in the blasted reflecting elevator car, I started to cry.  Thankfully, no one noticed, we made it unperturbed to the mighty eighth floor, I had the VF test, and was escorted to an exam room, where I promptly pissed everyone off.  Last visit, I transferred easily from wheelchair to their exam chair, then watched as the nurse laughingly drove my chair into a wall.  "Ooops!  I wish I had me one of these..."

Today, I was dizzy, febrile, and had recently wept.  No question but I was staying put.  The exam chairs slide out of the way very easily and the doctor, I knew from past visits, didn't mind at all.  But the nurse pursed her badly colored lips, went "tsk tsk tsk," and then huffed and puffed her way to a gathering of nurse-types in the hall, where she proceeded to "tsk tsk tsk" with renewed vigor.

Fuck 'er, I say.

And cried while I waited for The EyeMan.

Last time, both eyes were 30, I think.  Today, 29 in the left and 31 in the right.  Actually, I might have that mixed up.  So he added another medication -- and back I will go in a month.  We've picked up right where we left off, he and I.  A regular dance.

The new drops sting and blur my vision.  I threw the package insert away when I saw the prodigious number of side effects. 

Oh, and I cried some more on the way home, but at least had recourse to a pair of dark glasses and a driver distracted by squirrelly traffic.

Thursday looms large, as do my hopes for it.  There is, I think, a psych evaluation necessary for the ketamine infusions, so I'd best quit this bursting into tears business immediately.

Once there was a way to get back homeward

Once there was a way to get back home

Sleep pretty darling do not cry

And I will sing a lullabye

Golden slumbers fill your eyes

Smiles awake you when you rise

Sleep pretty darling do not cry

And I will sing a lullabye

Once there was a way to get back homeward

Once there was a way to get back home

Sleep pretty darling do not cry

And I will sing a lullabye

natural tears

hey all, hello, my beloveds!

please excuse any typos -- and let's pretend than any spelling error i might make is due to a typo and not ignorance! -- as my vision is really, really weird right now.

monday's surgery went much better than i expected.  my go-to-guy doctor paved the way admirably, as i should have known he would.  they told me, "he really cares about you... we don't get that very often from PCPs." brought me to tears.  i care about him, too.

the nurse who was with me pre-op?  her sister has CRPS!  no, i am not rejoicing that her poor sister is suffering, but i was wonderfully relieved at not having to explain what CRPS is, and so on and so forth. and when the anesthesiologist, freaking out at the sight of my legs, began demanding TED hose and such, she politely shut him down while i was still getting a whiny "n-n-n-n-n-oooooo" out of my mouth.

she had the wonderful idea that they wait and do any repositioning or whatever until after i was unconscious.

truly, the traumatized person in the whole affair was the poor anesthesiologist -- i felt for the poor fellow but it took him no time at all to adjust once he had the necessary information and was from then on a prince! a peach!  a pear!

anyway, i can see very well in the distance with my right eye, but everything within 4 feet is a blur.  my left eye remains legally blind, near, far, and in-between.  i have six drops with 16 different delivery times, eye patchs, wrap around sunglasses, and several pairs of old glasses with lenses poked out, and most of the time just want to keep both eyes closed.

my pressures thus far have been acceptable, unexpectedly accepable!  she told me to be ready for emergency surgery should the pressure spike, but thus far this eye has been toeing the line as instructed. i speak to it in a firm voice, and deviations from the plan are not to be tolerated.

the next surgery will be the 26th, followed by pressure checks (and navigating the world's traffic -- all together now: "Poor Fred!"

CRPS has, of course, gone on a rampage.  for some reason, it's decided my left side will be ice cold and my right hot enough to fry the proverbial egg.  spasms galore.  my meds are very messed up, as i am on a jacked up dose of steroids, and a higher dose of fentanyl.  the ankle that felt pretty much "healed" is barking loudly as well as an area high on the right femur.  and, just for giggles, the hardware in my right elbow seems to be slipping.  i know.  it can't really do that, can it?

my hair is going in directions i've never imagined, pulled, pushed, smashed by glasses and elastics and cords and bed-head.  i scared myself when i glanced in the mirror this morning.

in cat news -- buddy thinks all of this eye paraphernalia is meant for him, and he is very close to clawing my operated eye out in an effort to get himself the eye patch.  the elastic is too much for his little entitled soul to withstand.  dobby is frightened by all of it but intrigued by the smell of the drops, the "eye bag" (a lovely bright purple plastic thing, made in china), and my many different ocular incarnations.  i do a passable pirate just for him, full of args and ahoys and mateys.  the headline feline news, though?  ms. marmy fluffy butt decided, i guess, that i needed her!  after about a solid year of being on her shyte list, she comes to me now quite often, for loving and *ack*-*ack* solicitous inquiries.  it has cheered me immensely.  i don't have to explain myself to these three.  they are sort of like... youse guys.  out there.

well, that's not true.  the feline triumvirate DOES demand explanations, prompt ones, too, and delivered in an acceptable patois of cat and the queen's english, with the correct *ack*-*ack* cadence when addressing the queen of queens, the Marmy.  dobby requires several iterations of "good boy" to be worked seamlessly into any conversation, but buddy the incredibly large maine coon "kitten" can get by for hours with a wink and an index finger wisely set aside the nose.  he's strangely subtle, that one. should you fail, though, to uphold your end of the subtle interlocutory exchange?  buddy will punish you by finding a way to sit on your face.

not always the greatest configuration after eye surgeries.

fevers are within normal fever limits, so i've not had to call about that.  but there are now chills, so i am trying to be wise.  sagacious.  smart.  savvy.  don't tell anyone but there is building pressure and pain in the RIGHT shoulder, as well as an increase in pressure (but not pain) in the left.  the left "former" shoulder. (i actually hit 101.8 and stared, giggling, at the instruction sheet carefully setting the limit for a call to the ophthalmologist at 100.  chortle!  as there is no pus streaming from mine blessdèd eyeballs, but there is audible CRUNCHING in each shoulder and an ungodly, unholy amount of pain in my right hip, i'm gonna go rogue and say... it's not the eye!)

that reminds me -- another blessing from monday.  they understood how to treat my left side, as in, not to hyperextend that arm, since it has no "girding." in fact, they braced it brilliantly, and i need to pay attention to how they did it and copy it here at home, as that's one of my worst sins -- extending that arm.

just on the basis of my high steroid dose, traffic duty, little sleep, and his ever ready presence with coffee and pizza (well... he does what he does best, y'know?  he's a blessing, he is):

all together now -- "fred is a saint!"

on the very, very down side, i finally clicked on facebook -- I DESPISE FACEBOOK -- only to find a days old message relating that my mom FELL in the nursing home, breaking her leg in three different spots, requiring surgery and pinning.  she is doubtless frustrated and depressed, frightened and weary. i wish i could be there, with my natural charm and vivacious wit.  i used to be pretty darned good at taking care of people and i would love to take care of her.

instead, i will wash the eyedrops out of my eyes with natural tears.

© 2013 L. Ryan

Go-To-Guy and Kick Ass Justine: The Good'uns

Hi all,

It's been a weird time.  Unable to sleep, not just a case of insomnia, but a complete dereliction of repose.  My repose sentinels have slacked off their duties, the lazy bums.

But there is good news!

My go-to-guy doctor gabbed on the phone with Doctor Sex Kitten, my ophthalmologist, and was able to work out an agreement so that I may undergo general anesthesia and eye surgery at an outpatient day surgical center.  He gave good guidance to her about dealing with CRPS, pain management, and advised against freaking out over my pre-operative blood results, as my goal in life is to redefine "normal." He's a good man, my go-to-guy.  As is his trusty sidekick, Kick Ass Justine.

I don't think he realizes all that Kick Ass Justine does for him.  Beyond the details of working as his nurse (she is a most excellent vampire), she serves, quietly as his Gate Keeper.  She also puts up with beaucoup nonsense, such as older white gentlemen of the Southeastern USAmerican sort who do not wish her black hands to apply, for example, the leads required to record their heart rhythms.  One of these Southern Gentlemen actually slammed a door on her foot after she refused to find a nurse blessed with lower levels of melanin to draw his sludgy putrefied blood.

We enjoy each other.  We shut the exam room door and -- somehow this must be the word -- dish.  We dish it out.  She tells me about the assholes, the women who come in every week with palpitations and the vapors, the man who calls every morning, certain of being near death, and who wanted to sue when psychiatry was mentioned.  She tells me about her grandparents, her daughter, who is just starting her own career in nursing, and the struggles of being a single parent in a bad economy.  She fervently prays before every blood draw and has the distinction of never having failed in that mission.  She advises me on my dysfunctional family issues, as her family is eerily like mine.  We talk about New Orleans a lot, why, I do not know.  We talk politics and Tea Baggers, and we curse like gilt-tongued sailors full of good grog.  Go-to-guy doc often has to tap on the door and ask if it'd be all right with us if he came in for a little visit.  Sometimes, we say "no, not yet... we'll get back to you."

She tells the sad tale of her nephew, a young man who was suffering a horrible stroke, turned away at the fine, award-winning facility across the street from their office, then carted around town until finally being dumped at the local charity hospital -- by which time, he was in a coma and remained in a vegetative state until his death years later.  She tended him, and led the family fight for justice against the fine, award-winning facility that did not like the color of his skin and his inability to produce his insurance card.  Kick Ass Justine has never forgiven me for not suing that same facility after my own disastrous experiences there, and even after all this time, will occasionally curse me out -- in her mildest curse-out mode.  "You could at least be comfortable..."

Anyway... she and the doc she looks for have again done good things for me, and I am so grateful for them both.

They filled out the annoying voluminous documentation required to renew my disability certification, patiently reassuring the huge corporation that keeps me in poverty that I remain "permanently and totally disabled."   Most physicians charge for this service -- but go-to-guy and his gate-keeper gather all the records and provide detailed documentation, and actually get it back before the deadline.  Try to thank them and they respond with weird comments like: "We're just doing our job."

So July will see preoperative clearances and testing, and come August 12 and August 26, Doctor Sex Kitten, my ophthalmologist, will slice and dice with joyous abandon.  At last check, Fred and I will be required to return to her office DAILY for a month to make sure that my glaucoma doesn't go rogue during the recovery period.

Which reminds me... a vent about parking fees is long overdue...

More Blogging Through Email: How to Embarrass Your Friends

hey girl.

do you know how i spent yesterday?  feeling my way around the house, running into walls, actually cooking a huge meal for fred's wednesday evening dinner with kitty (and 7 other people of the militant lesbian existentialist feminist types) -- using very sharp knives, hot oil, boiling water, the whole shebang -- while SEEING DOUBLE!

it seems like every wednesday i am supposed to double or increase one of these new meds, and whoa, nellie, does that make wednesdays (and thursdays and fridays) interesting.  "am i about to cut into this lovely dancing chicken breast or am i about to slice my shimmying index finger off?"  "is that a bouncing mushroom or the jumping bean of a wine cork?"

so... while fred was out turning on the local dykes and i was trying to watch the seven televisions in the bedroom, while petting the always multiplying number of cats ("there's marmy. there's dobby, there's buddy, there's buddy again, wait, there's dobby one more time, and look!  another marmy, no, two more marmies!"), feeling dizzy, dreading what going to the bathroom was going to be like... i ripped off my fentanyl patch, and passed on my 9 o'clock and midnight meds.  then, apparently, i passed out and slept from about 8 pm to 7 am.  if i had spasms, i didn't know it.  plus, i shut the door -- which is like putting an upside down crucifix as a sign -- open this door, wake me up, and your ass is the proverbial grass.  chasing out the dozen cats was hard, though.

and would you believe...?  i am still seeing at least one-and-a-half, if not double!  it's like everything has a visual echo. one and a half wheelchairs.  one and a half café presses to pour boiling water into...  but i can finally see well enough to type. with, praise the lord, spellcheck.

while i am gabbing about eyes -- i saw the eye doctor -- a lovely, romney-like (as in "all business"), whirlwind of a teeny woman who runs at 100 mph on the most beautiful italian stilettos, in mini-dresses, all doctored-up, of course, by a long prim white coat (tailored).  her name is dr. k and she is very good.  i could kick myself in the booty for sticking with that guy we used to waste an hour on the highway to get to... and then, he would never answer my questions, and used to laugh when i asked about a plan.  the straw that broke that camel's back came when i asked him when he planned to remove my cataracts and he said, "never, if i can help it." and laughed.  so i almost ran to good old dr. MDVIP go-to-guy, begging for a referral.  i am mad at him, too, though, because for all those years i would tell him how the guy made me feel minuscule and unimportant, and that my only option was to slowly go blind. or to go slowly blind. whatever.  see? it's the blindness behind my bad grammar.  or am i confuising french weeth zee anglais?

well, now that  i AM going blind, it's largely that a-hole's fault.  he let my eye pressures stay much too high for much too long, did not track the damage to my optic nerve often enough, etc.

anyway... she does more testing than any doctor i have ever visited (and yes, i admit that impresses me, particularly because she explains -- quickly, very quickly -- what they mean), compares results, and even runs additional tests because "the data shows a tie... we must break the tie!"

she has a drably dressed female flunky, who is apparently her Scribe, who hovers behind her writing down all the numbers, parameters, and codes that the good dr. k barks out in a voice much larger than her person.
i had to visit five different rooms for the visit, no biggie, unless you are in a wheelchair and have to transfer an ungodly amount of times, in the presence of medical techs unused to people so impaired.  nothing more fun than plunking one's ass down on an unsecured rolling office chair, for example.

also, who knew that having to put your chin in the thingy, while pressing your forehead against the other thingy puts horrid pressure on the area where you used to have a shoulder?  useful trivia, eh?

BOTTOM LINE:  removing a cataract is normally a 15-minute l'il operation with local anaglesia.  "you have terrible glaucoma. everyone experiences a huge rise in eye pressure after any eye surgery... but for a glaucoma patient that can mean blindness... also, you still have this p.acnes infection in your body.  we would need to use general analgesia, and perform two surgeries at once, a glaucoma surgery as well.  and so... the decision willl not be mine [dr. k's] but the anesthesiologist's at the hospital. let me go make some calls..."

and no anesthesiologist would agree to touch me.

so... she said i could at least go ahead and get new glasses, so they tested my vision, which could easily have been a comedy routine in and of itself.  "okay, read that line for me." "what line?"  and so on...

anyway, i get to have some 9-inch thick glasses in lieu of having my cataracts removed.  she said to let her work on the anesthesiologists.  i figure all she has to do is pick a young, feisty, unmarried one, take off her white coat, and invite him out for some fresh squeezed carrot juice at the local health food store.  sit on a bar stool, cross her little legs, and show those million dolllar shoes...

now i need to figure out whether to wait until i adjust to this freaking medication increase before i go try to try on glasses and get that script filled.  hank could be my fashion adviser, i guess.  oh, god.  he gets excited when i wear something besides an oversized men's short-sleeve button-up, button-down shirt -- they happen to be the kindest tops i can wear after losing one shoulder and having the other in constant pain from overuse.  it's oh-so-attractive!  oh... and they go over neutral-toned oversized scrub pants because they are the easiest for me to put on, and kindest to my legs. so hank gets excited and compliments me when i turn up in my faded "cal" t-shirt and sweat pants!  "you look nice, honey!"

what a sweet boy.  of course, some idiot at the first existentialist church of angry lesbian feminists gave him TWELVE kelly green tees promoting the local elementary school down the street.  this thrills my snazzy dresser, and now all i see are HIS sweat pants (complete with air holes) topped by these green well-made-so-as-to-NEVER-wear-out EXISTENTIAL ELEMENTARY -- WE LOVE LEARNING t-shirts.

the good news, and i imagine you would like some:  the memantine is helping the neuropathic pain -- by maybe 20%?  and the mobic, my god, a drug that has been around forever!  why wasn't it ever offered, or even mentioned, before?  okay, so it may make me bleed to death... but that aside, it is helping at least... 30%. some days more, even, but some days not at all.

it's the dantrolene that is kicking butt. and supposed to be stopping the seizures, and it AIN'T.  but i am not yet at the full dosage.  i've gone from 25 mg a day to 150 mg (as of yesterday) and next wednesday?  300 mg.  at that point, my vision may resemble what one sees looking through a kaleidoscope.  so someone come up with enough money for a week of joints, and i will just lay in bed and dooby on down...

what else, healthwise?  my depression is better. i only think of suicide after about 4 pm.

my right leg is still leaking.  so yes, i have a huge kotex pad from the mitt-romney-50s (since holding an aspirin between my knees would accomplish nothing) wrapped around my leg at all the spout spots.  you haven't lived until you wake up and try to figure out why your bed is wet... not under your bottom, not with urine, not from a spilled water bottle, not a cat contribution, but from a leg that has sprung a leak...

hank and i are doing the best we can to be together.  he is scared.  i am scared.  so we meet in the middle of scared.  and joke around a lot, which -- if we have any brilliance to us at all -- is our brilliance.  the presidential race provides a lot of material.  i know, i know, you are either a republican or a libertarian (my bet is libertarian) and i am a socialist, and hank is mr. independent (he thinks)... so i should leave politics alone.  but really, when you can't see and you're about to perhaps lose your health coverage AGAIN, and you are descending wayyyyy into poverty -- along with your fellow 47 per-centers -- and after 4 pm you consider applying a dozen fentanyl patches and taking 500 mg of baclofen?  2012 amerikan politics is your friend!  i do have to stray from foreign policy because then i just get overwrought.

so.... HOW THE HECK ARE YOU? are cindy and amber still on The List?  and would you come deep clean my bathroom (no one should be allowed in there...)?  ruby the honda needs help, too.  whenever i climb insdie ruby the honda, i start grabbing tissues and wiping... which does nothing beyond make fred give me the stink eye.  "i know, i know," he says.  then he forgets, forgets.  i scrambled in there last week, for the eye appt, and it REEKED of pesticide.  he said he got in the night before and there were ants everywhere.  duh.  he eats in the car and i just cannot figure why ants would be all over my dear baby ruby.

okay, who knows when i will be able to write again.  i will try. and i send you love and hope, love and hope.

profderien

Behaving Badly

I'm so thankful for my well-developed sense of humor.  You guys need to leave Allen West alone.

Over time, we've all been trained to navigate life by icon.  Mad men rule, really.  The last few days, I've come to dislike brands and very dense signifiers, and not only because they're the ruination of language and conversation.

I'm supposed to use two kinds of eye drops to treat glaucoma.  Both cause redness, stinging, and blurry vision. My vision is further impaired by cataracts -- gifts, we believe, of corticosteroids.  My new eye doc wants to remove those suckers and also perform some kind of stabbery to the back wall of the eye, to help reduce eye pressures.

Problem is, I tend to "forget" the drops, entirely, or, magically, just the one with the worst side effects. My forgetfulness dates from around mid-December 2011, when I scored my best eye pressures in years during a week when I'd only used one of the two drops due to mail order pharmacy confusion. "Hmm," I said to myself.  "And huh!"

Checking out the calendar for upcoming krapola, my appointment with NewEyeDoc waved and blew me a kiss.  She'd scheduled it with the hope that all the bone infection nonsense would be resolved by then, and that we could concentrate on recovering and preserving vision.  This was to be our pre-op planning time.  I don't know how comfortable she will be proceeding with the infection still active, or whether she wants to wait until after the spacer removal (also known as The Gift of Flail).

Clearly, however, it was time for me to start using the drops as prescribed.

And so I've been blind as a bat and crabby as can be, either as a result or as a highly unlikely freakishly malicious coincidence.  "Crabby" is all wrong.  Forgetful, trapped in a headache, spiraling blood pressure.  We don't know why my blood pressure shoots up on these drops, but it does.  I don't know whether the jangling::clang:clang::screech of my headache is related to the elevated blood pressure or just a haphazard kiss of the divine, but the message received from the accumulated misery is... don't move, don't turn on that light, don't try to make the lines of the novel separate, enjoy them as a crossword puzzle!

[Above all, if anyone offers to help you, scream "No!" as if the notion were ludicrous.  Be sure your voice is heavy-laden with annoyance.  Poor Fred.]

Yes, I could make this another Poor Fred post.  Instead, unless you think I need the impetus of more debasement, I'll make today a new day.

For years, Fred and I have struggled to conquer the complicated notion of "when does Retired Educator Prof-de-Rien need and want help."  I think there is an elegant solution that ought to be self-evident.  I need help when I ask for it.  As for how that help should look?  Well, again, I refer you to the asking component, which should contain all necessary specificity.

Ah, yes, perhaps I should refer you to the famous laxative post.  Otherwise, you'll be left with this:  I want WHAT I want, WHEN I want it.  To put it any other way would be dishonest.

Let's imagine {guffaw} that I make a list of things that need to be done around The Manor, things that I am not physically able to do.  Shoot -- given last night's post -- let's just use the example of putting birdseed into the feeders.  It's important to me, but Fred also enjoys the birds, and we both are hoping that the bluebird romances of last year will be rekindled so that we'll have babies in the nesting boxes.

So, one month ago, noticing that the feeders were empty, I put "birdseed" on the grocery list.  And I continued to put "birdseed" on the list, the lists usually occuring biweekly, until this past Sunday, when I not only put it on the list but put yellow Post-Its bearing the same message all over the bathroom mirror, on Fred's computer monitor, and around Ruby the Honda CR-V's steering wheel.  You may be assured that verbal reminders had been issued with great regularity and -- really -- with relative good humor.  I mean, needing birdseed is not like needing a laxative, you ninnies!

The listings, in sequence, looked something like this:
birdseed
birdseed
birdseed
birdseed
birdseed

The conversations about birdseed also followed a progression.  Beginning with Fred's "You should write it down on the list," and ending with Fred's "Oh, you still want birdseed? That was on last week's list, I thought."

I was very proud of him when I saw the 50-pound bag of seed nestled among the ten 40-pound containers of cat litter.  And when I found him weeping into his pillow, a heating pad on his lower back, I told him how moved I was by his purchase.  "Arggh and arggh," was his predictably selfless reply.

But he was clearly just angry yesterday, when I rolled up to his carpeted and paneled Man Cave, cleared my throat and said, "You know, it's great that the 50-pound bag of seed is nestled among the ten 40-pound containers of cat litter out in the laundry room..."

"I know.  I haven't had time to put any outside..."

I had gone too far.  In my defense, I was frustrated by my failure to accomplish one single solitarity bit of anything.  Of course, the fact that I turned on my partner at that moment doesn't say much about my character, and I won't defend it, either.

[All references to ADHD and youknow and blahblahblah have been removed to preserve normal brain function in both Author and Reader.  Efforts to foreshadow -- beyond the reference to the laxative post -- were abandoned.]

At midnight, I heard grunts and the sound of pouring grains. The crunch of dirty gray crocs on flagstone walkways. The blare of Fred standing in the moonlight, face open, face up. If we had modern doors, I would have heard them slamming, all modern-like, and -- seconds later -- locks locking.

There was good-natured fighting and some fierce short chases, flits, really, among the chickadees this morning. We still have some suet up, so the nuthatches did their breakaway thing, snacking -- snarkily -- upside down, while the other birds fought. A titmouse stood up to a woodpecker, or tried.  We've never had mockingbirds before but now have two dedicated couples who share the chore of dive-bombing humans, even those bearing seed, so we are hoping for little mocklettes.

No bluebirds yet.

I most enjoy watching the nuthatch.  Jerky, quick, assured, intelligent. They "creep" but are not creepers!
Very tame.  Also, stubborn.  And did I mention that they're often upside down?

Why not take a few minutes and watch one now?

• Tool use in birds is rare, but the Brown-headed Nuthatch will use a piece of bark as a lever to pry up other bark to look for food. It may carry the bark tool from tree to tree, and may use it to cover a seed cache.
• Nests of Brown-headed Nuthatches are regularly attended by extra birds, usually young males. Whether these helpers-at-the-nest are older offspring of the breeding pair is not yet known.

a nod is as good as a wink

I have glaucoma that is advancing kind of fast -- and now cataracts in each eye -- so there are some unanticipated difficulties in day to day blog maintenance.  You may have noticed some odd things going on, font-wise, for instance!  Bizarre spacing strategies.  More than a few instances of original spellings!  After hours of messing around with formats and styles this morning, in a vain attempt to avoid doing anything of real consequence, I have hit on this font style as being easiest on the old eyeballs.  Even though a couple of people suggested color changes as well, probably because I've put together a pretty boring scheme, I am keeping a basic stark dark-on-white.  Still, the white background is a problem.  White and light are both my biggest visual challenges, really, and they only become more troublesome as the day progresses.  By the time I pack it in, usually in the wee hours, my vision fairly throbs from all the brightness.

I have built-in strobe!

For some reason, my ophthalmologist refuses to entertain any discussion of removing the cataracts.  You probably wouldn't believe me capable of tolerating obtuse and deflecting responses to my health questions, but you'd be surprised how fear can still the tongue.

The oft-mentioned MDVIP Go-To-Guy, a true Godsend, finally deciphered my frequent whine about the eye doctor, finally figured out how scary I find this ongoing loss of vision, and suggested a new specialist.

This change is not at all like yesterday's defection to a new cardiologist.  My former Heart Dude was and is simply outstanding;  It was his hospital affiliation that spooked me, not him.

Where does this guilt at changing doctors come from?  Why do I care what my ophthalmologist thinks of me, if he even does?  It's ridiculous, this ego-driven world view of mine.  We simply don't communicate well.

No, that's not true!

He ignores my complaints and will either talk over my questions or answer them with sarcasm that I just don't get.  Before every appointment, and Good Lord there have been enough of them, I would sternly tell Fred that "this time" I would not leave until I understood the "plan." About five years ago, the doctor made the only clear statement of intent that I can recall, saying that "[his] job is to preserve what vision [I] have."

Well, that battle has been lost!  I asked when he planned to remove the cataracts, and he answered with "Never, if I can help it."  That left me speechless but also finally motivated me to turn to Go-To-Guy.  In addition to refering me to a new dude, Go-To-Guy explained that glaucoma complicated the seemingly simple decision of how and when to remove a cloudy lens.

This is one area of my health concerns where I can be considered non-compliant and generally a rotten patient.  I had years to observe the stubbornness of my grandfather as he went completely blind from glaucoma.

One day, heh-heh, I should regale you with the stories of the Old Man firing a gun in the general vicinity of his brother-in-law, who had the unfortunate habit of belittling him.  People tended to allow his bullying, in large part because he was a wealthy old cuss, and without an heir.

I'm sure that, years later, when mean old James died, a lot of vague relations blamed their failure to inherit his millions on my blind gun-toting grandfather.

And it was something, too, to see him mow the lawn.  With a riding mower, without any discernible guide beyond his intimate knowledge of his own property.

He managed huge vegetable and flower gardens without apparent difficulty.  The only thing he clearly gave up was driving a car.

I am nowhere close to having his bravery or substance.

My failure to use the eyedrops designed to lower eye pressure is not a complicated behavior.  The whole issue scares me to death.  The drops may lower my pressures, but they also mess up my vision so much that I cannot function as a seeing adult -- can't read, can't write, can't watch television, play bridge, or make a discerning judgment based on the casting of one of Those Looks.  My eyes become red and irritated, the world shows up as a great big blur.  It's not even the kind of deficit where applying magnification has any effect whatsoever.  Granddad used to peer at the New York Times through binoculars.  That's not going to work for me.  I'd end up with magnified mess.

blah::blah::yadda::yadda

There is actually something else going on with these orbs but I cannot remember the term.  It has to do with the center part of my vision going to heck.  I take the stance of it-hardly-matters because I was told by Eye Guy that there was nothing to be done about it, sorry!  I was legally blind before being diagnosed with glaucoma and I guess that has given me a bit of fatalism over the whole business.

Predeterminism.

Defeatism.

blah::blah::yadda::yadda

If anyone out there has any expertise in layout/design with an aim toward ease on the eyes, particularly how to  handle disturbances that come from "halos" and distortions due to cataracts, please lay your opinion and advice upon me! Also, Eye Guy told me not to pay for new glasses, as my vision will be unstable for a good while... Is that right?  Am I just supposed to break out the Braille?

Jeez.

Wednesday Morning Blahs

What a long night. I would sleep maybe 40 minutes at a stretch, then get up (and getting up ain't easy), wander around a while, get back in bed (again, not easy), lather, rinse, repeat.

There is a lot on my mind but none of it is new, none of it is particularly remarkable.

There is pain, unremarkable pain. There is spasticity, funky jumpy spasticity. There is something that doesn't qualify as pain -- not discomfort, no, it's more mobile than your ordinary "oh my..." It shoots by; It pivots, twists, turns; It burns.

Visual trickery drags my mood down low -- When I wake and turn on the light, the lamp goes in and out of focus, is confusing, has no depth. That's what is happening more and more -- a loss of light, a loss of depth. I did not realize how much we depend on depth in the not-so-simple activity of identifying the things around us, the familiar things we don't have to mull much over... usually. In the last few days, I have not been able to identify the following: an overhead fan, a foot, a pillow.

I am having great fun, however, with the many misreadings I make of novels, blogs, instructions, and even traffic signage.  (Not to worry, I am not driving.)  Sometimes it is fun to just go with the misperception -- very revealing, too, as all is supplied by one's own errant brain. 

Sometimes.
Not today, though.
It's raining, a little on the cool side. It is early, even for me, and my eyes are so messed up that subjecting them to close reading seems cruel and pointless.
Besides, someone needs to use this Flip Video thingy. 
Hmm, let's see.  I'm not dressed, Fred is still abed, and I don't hear any Domestic Staff bustling around.  It's just me and the cats.  Hmmmmmm.

How are the cats these days, you ask?  (And aren't you the Sweet One!)  In the ongoing battle with our environment here in this wing of Marlinspike Hall, we are making a concerted effort to wean The Extant Felines {{waving to Sam-I-Am, my Heaven-based liege lord}} from their habit of scratching furniture.  In our wisdom, we decided this would best be achieved by eliminating even the whiff of boredom from their daily fare.

Since, absent Sammy, they are a familial unit, there's not too much rivalry among them, it's mostly a matter of not letting them succomb to ennui. Marmy Fluffy Butt and Uncle Kitty Big Balls (a.k.a. Little Boy) are siblings. Marmy rules, but only because she went through the fiery initiation of surviving on the street for eight months, the last weeks with a hell of a big belly on her tiny frame -- a belly full of kittens. We don't know what she went through out there, but it wasn't sweetness and light. So what Marmy wants, Marmy gets.

She has done the proverbial 180 since Sammy died. Suddenly, I was her greatest find since kibble. There are nights when it is *precisely* Miss Marmy Fluffy Butt's doing that I fail to sleep, for she must be attached to me, on top of me, head-butting me, murmuring her *ack*-*ack*s and staring, with great intent, deep into my burning red eyes.

                                              Ms. Marmy Fluffy Butt, Sister to Uncle Kitty Big Balls, Mother to Dobby

We have a relationship based on Attention Paid to Marmy, Marmy's Grooming, BellyRubs of Marmy, and, most of all, Whispered Expressions of Admiration for Marmy.  She does not much like boys of any sort, lacks -- completely -- maternal instincts, and is about as blatantly manipulative as they come.

She's a hard girl to love, and her delight at having Master SamWise disappear from her competitive world did nothing to endear her.  Of all the group, she is the most strange, estranged, separate.  But then she will go and do something silly, and most all her hardness is forgiven.  Lately, that has been her wild trips on slippery new floors, trips begun back in Fred's work room, full speed achieved while weaving her way through our tiny wing's living quarters, dodging tables, leaping over rugs, sliding under the odd davenport, sling-shotting her way around tight corners, and slamming on the brakes about 15 feet from the book case packed with old, soft paperbacks...  Chin in the air, paws prancing, a red glint peeking out the corner of an eye, she accepts your admiration, your glee at her uninjured state, then she goes all cartoon on you again, and reverses direction...

We are not sure she realizes that she is mother to Dobby. It doesn't matter.  He is, in any event, acceptable to her as a playmate from time to time.  She has been known to slap him silly for no discernable reason, behavior that makes her a frequent object of his contemplation.  He is a forgiving little soul, is Dobby.

He was the runt of the litter.  Marmy, in fact, had just up and quit the birthing process with Dobby's arrival in the queue.  Fred delivered him -- she took no interest.  We were convinced he'd never make it, as his contrary nature showed itself from the very beginning.  He would bypass a teat in favor of climbing as high as possible and often ended up perched on her confused head while his sisters and brothers gorged on milk.  Like most runts, he could be found either excluded and alone, or surrounded and smushed at the bottom of a pile-o'-kittens.  He was the one who promptly fell off the bed, thought the litter box a fine place to sleep... oh, and he was the one who was fascinated by the great big cat, Sammy.  Very David and Goliath.  A weeks old kitten purring at the hissing, wild-eyed (terrified) grown boy.

[Sammy was so afraid of Marmy and her kittens that we had to CARRY him past them in order to get him to the litter box.]

So, of course, Dobby and Sam-I-Am became best buddies, and spent most of their time together, sleeping and playing.  It was wonderful to witness how Sammy grew into himself at long last with the help of this weird little star-faced runt.

Dobby and Sam-I-Am

Dobby definitely rules the roost without knowing it.  His needs are easy to meet, his desires mostly reasonable. 

He still spends several hours each evening looking for Sammy, going from room to room, calling.  We try our best to distract him but lately it has started to piss me off.  I don't want to think about a dead cat every evening.  I don't want to repeatedly comfort this little manipulative elf, not when it drags me down to do it.  Anyway...

We haven't filmed it yet -- but we will.  One of Dobby's massage sessions.  They are... um... weird.  Fred started it when he was but a gaseous kitten and now The Dobster insists upon it several times a day.  What?  Well, I guess you could call it an intestinal rub, a very deep tissue massage.  He promptly assumes the position, a sort of intense in-folding, living origami.  It looks, frankly, like a sexual torture session, except that there is no genital contact, no sexual overtone, undertone, nada.  Just a strange, wild-eyed look upon a feline's face while his body contorts with painful pleasure.

If you can keep your hand from cramping, at about the 5-minute mark, the little guy usually falls asleep.

Uncle Kitty Big Balls, Dobby's uncle, has made a remarkable recovery from the sorry state he was in at the beginning of his stay here at Marlinspike Hall.  Mostly bald with weeping sores, severely underweight, abscessed -- he lost most of one foot and just generally had a tough time.

I had refused to allow his adoption at the time we took his preggers sister Marmy in -- he looked rough and mean.  Plus he didn't like me.  He loved Fred.  Didn't like me one bit. 

Convinced he would do well as a sort of "neighborhood cat," I chose to ignore his obvious love affair with Fred.  You could hear Fred crooning to him as they sat by the moat late at night in the warm summer months.  Then he disappeared.  The cat, not Fred.  Without discussing it, we each concluded that he must have been hit by a car...

Last April, I was hanging out in the ICU, being lazy, letting a ventilator do the hard work of breathing, when Fred charged into the unit and announced that he had something vitally important to discuss with me.

"He wants to turn off the machines and let me die...  Hmm.  Wait a minute.  I thought I was doing better!
Oh, God, he's having an affair..."

No, it was the cat.  "He's back!  It's a miracle!  I am going to trap him and take him to the vet.  I want to adopt him.  I know it is extra work, extra vet costs.  I will take care of him... I'll pay the difference... blahblahblah." 

What did I care?  I was on a freaking respirator.

So Uncle Kitty Big Balls began his own private medical odyssey while I eventually got back to my stunning baseline, and we both came "home" on the same day -- me from the fancy-schmancy medical center, and he from the vet.

He's a gentle soul, it turns out, and so content just being warm, dry, and fed.  If you add affection and the familial predilection for the tummy rub, he's ecstatic with joy.

He went, however, from underfed and sickly-looking to overfed and excessively corpular.  Robust.  I call him El Gordo when Fred is not around.  He clearly has plans for avoiding any future episodes of hunger.  Because he sincerely seems hungry and because feeding three cats is enough of a headache already without individualizing one of those diets... we aren't putting him on a diet.  Per se.

I found the perfect thing:  The PetSafe SlimCat Food Distributor Ball, Blue.  $5.65 at Amazon.  What could be better than a food-based exercise program?

So I introduced this new bit of higher education to the Extant Felines this morning... and this is what, ummm, "happened":  

Shhhh! [Part 2]

Okay, so the doctor with whom I had an appointment on the 23rd turns out to be a quack.  I cannot tell you how badly I took that news.  There were numerous red flags, and to mix some good metaphors, the icing on the cake was being told that there was a good possibility that I could come home with the infusion pump and do the subanesthetic ketamine treatments by myself.

Ummm, okay-y-y.

I kept turning up other things and can only say that I spent a lot of time bursting into tears as I watched my chance at getting some real relief slip away.

Enter Jim Broatch, Executive Director over at RSDSA.  I sent out a Hail Mary email to the organization, and he wrote back with the name of another doctor I might try. 

I have to say... this new doctor does not check out as... what?  Pristine, I guess. He has had action taken against him in the past for lying on an application.  But he is actually a rocket scientist, so he is at least interesting.  Really!  He was an aerospace engineer originally...  Moreover, my friends, he has hospital privileges and is on the staff of a famous rehab hospital.  He's board certified and is included on my insurance's provider list. 

The first dood wasn't on that list and had no privileges anywhere.  His former partner left a patient brain dead a few years ago when he interpreted an O2 sat monitor alarm as being the alarm's problem... He just replaced the monitor without checking the patient.  [Reportedly, the nursing staff was having a collective cow at that point.]  Even after replacing the monitor, then finally realizing the patient was, indeed, coding, he failed to get him to the hospital in "a timely manner."  Worst of all, though?  He claimed people were out to get him because he (the doctor) was recovering from cancer.  Uh-huh.  Right.  That would explain the other 5+ malpractice insurance settlements as well.  I tell you, if a physician is impaired because of serious illness, I kind of expect him or her to recuse themselves from active patient care.  But that's just me...

Anyway, the first dood won't admit that this friend of his, who lost his license, is on staff at his facility -- but I managed to somehow talk to the guy on the phone there.  Same guy outlined the "take-the-ketamine-home-with-ya" bizarro program.

No, thanks. 

Fred was fairly smirking, which hurt my feelings. 

And when I told him I had a new, more better lead?  He looked crestfallen.

I don't feel much support for this.  It feels very lonely, scary.  I know I am being silly, but crapola!  There is NO other treatment available to me beyond polypharmacy, and besides not working very well, that just sucks. 

So... I am waiting for a call from the Hail Mary doctor that Jim told me about.  As a result of an immensely stressful couple of weeks and abuse of the old body, I am in a high pain period. 

I saw the ophthalmologist yesterday.  I dreaded it.  He wanted to see me, on average, every three months, as I have glaucoma.  So I waited two-and-a-half years.  What?  I was busy having surgery after surgery, infection after infection, fever upon fever, and so on.  You know the drill.  Also, my vision was getting bad despite treatment and I just didn't want to face it.

My grandfather was blind, and I watched his sight decline throughout my childhood, until he was living in the dark.

I cannot imagine not being able to read.
Not being able to see Fred's face.

Back in 2002, when Dr. DooDooHead was fervently trying to kill me and left me on a respirator with failing systems due to a completely avoidable adrenal crisis, the only bright moment I had to hang onto was the vision of Fred's face as he bent down to me when I finally opened my eyes in ICU.  He had a smile like I have never seen since, a smile that absolutely blessed me and made me want to fight, and live, because I wanted to be with that man, forever.

I have cataracts in both eyes, my eye guy said yesterday, and my pressures were both over 30 -- historically, they hung out in the low 20s.

The redeeming feature of my life right now is that worry will accomplish nothing.  It won't cure my infected bones, the massive inflammation throughout my body, the pain, the fractures, lupus' nefarious effect on kidneys and heart muscle.  It won't make my legs work, or my hands.  Worry won't make ketamine heal me, and worry won't allow me to pick a doctor with the right bright ideas. 

It will only make the pain seem worse, and the troubles, insurmountable.

Much better to remember that beaming face, enjoying his company while I knock out those ADLs that make life so incredibly meaningful.

Look, Ma!  I dressed myself today...

Sorry. Don't fret -- this pity party will be over before I bring out the first tray of hors d'oeuvres.