Lazy Daze

So I played my "tease" earlier this afternoon, by mentioning that Fred and I had taken Ruby the Honda CR-V on a jaunt to the orthopedic surgeon's office.

That's right, we zigged north, then zagged a bit back to the south on a different parallel, turned left (which I like to call "west") and followed the edge of the Airport Lagoon (very near the government offices for the theocratic divisions of the Lost Alp canton) until we reached ShoulderMan's hip-and-happening, totally digital office suites.  We have been there so often since the summer of 2008 that Fred is considering adding it to the underground tunnels issuing from the Haddock's ancestral home, Marlinspike Hall.  But since we are really just Lower Caste Caretakers of The Manor, he feels like he needs Captain Haddock's permission before digging.

You will note that I did take the time to copy-and-paste an entry earlier, as I felt like blogging but also wanted to pout and drink a fifth of whiskey.  It was a long appointment and we got lost on the way home.  My fault completely, because for some reason I said "straight ahead" when I meant "northeast."

I just spent a fair amount of time filtering the day through my sieve of a brain as I composed an email to a dear friend, Ms. Diana-With-An-H.  And since another dear friend or five will be dropping by the blog tonight, I figured I'd post my second cut-and-pasted email of the day.  You'll probably learn more details about ShoulderMan's digs and doings that way than if I just sat down and started some sort of fantastical preamble...

So "Howdy High" to my several Carols, the Brother-Units, Tully, and the incomparable Pig Man -- plus to all my favorite Spammer Blog Bots and especially to whomever it is back in Berkeley who still visits every 17.2 hours, as well as The Weirdo from Ames, my most faithful reader.

And how is this for a promise?  The next post, which may come tonight, actually, will be the long awaited Feline Video Update you've been CLAMORING for.  "Clamoring,"  I say, "CLAMORING!"  Yes, we are in need of some not-so-serious amusement around here.

Here is the missive just delivered to one of the Interwebs Best Buddies, Diana-With-An-H.  Oh, so that I may be even *more* lazy, here's what you need to know about her, beyond her general wonderfulness: she was cooking up something awesome for her husband (a very lucky man, in ways I cannot begin to explain) and she has been helping nurse a friend who just had a mastectomy.  "Lazy Son" is, specifically, Nanette's son... and the three of them went out to lunch yesterday.

Krapola!  I probably should peck out a bunch of footnotes to further erode your reading pleasure!

But I won't!

hey.

good for you -- now come cook us something!  nah -- yesterday i whipped up some soup for fred and the lesbians (+ miss kitty, grrrr) for the famous wednesday night "church" supper.  i was so out of it, it took me about 4 hours, which was ridiculous.  but it was good!  cream of potato with charred red pepper, black beans, and caramelized veggies.  he brought home the leftovers and it fed us today, which was nice.

we are doing a lot better today, for some reason.  or ... NEWS FLASH:  when i don't say a word about how i am feeling, he perks up and chatters away, the sweet boy.

i bet brenda did feel awful today... she sounded a little too energetic the other day.  and the radiation can be very debilitating but she knows that. she sounds like one tough cookie.  i hope she gets some rest... bless her heart. (and yours)

hey, is lazy son any sharper when annette is around?  and how are you and annette doing these days?

okay... so.  the visit was not good.  there were, however, two hysterical moments.  

1.  remember, i practically LIVED in the man's office from august 2008 thru the fall of 2010, and even popped in after losing my insurance.  he has an intellectually-challenged guy who works as his nursing aide, named Rex.  Rex is sweet as heck and knows me very well.  when he called my name to go back to the exam room, i was filling out paperwork and promptly dropped the clipboard, sending the forms flying, then knocked over a sign on the table when i reached to retrieve them.  well, while i was picking all that up... a woman got up, said "here i am," and went back to the back with him!  so that left me in front of the closed lock door yelling "rex!  rex!  i am locked out!"  finally a receptionist went and opened the door for me.  and there was rex, giving me the evil eye.  i didn't know rex had an evil eye in him!  i said "hi" and flashed him a toothy grin.  he said, suspiciously, "who are you? and who is the woman i just put in your room?"  turns out this long, lithe, lovely lady was pissed at having had to wait, and that, according to her, she should gone before me, having arrived earlier.  i mean, who gives a shit about stuff like "appointment time"?!  rex thought he had lost his mind, or that there were two profderiens (an *absurd* proposition) or that i had experienced a miracle, been cured, and was out of the wheelchair, looking like a fox.  they didn't even make her go back to the waiting room, but he did at least get my chart out of the box on her exam room!  rex is really wonderful, usually -- the time i kept landing in icu hitched up to a respirator?  when i went for the first postop appt, rex gave me a bear hug (can you say OUCH?) and burst into tears. "i was so worried about you!" 

2.  where was fred during all of that?  well, last night, at the "church" supper, he was washing a dish, put his hand in the dish drainer and got stabbed in the finger by a knife that someone had left point-up.  in the doctor's waiting rm, it opened up and started bleeding again.  so he got up to ask for a bandaid... and the woman handed him a "medical history" form, saying "you'll have to fill this out, first."  
the whole room cracked up...

okay, now for the serious stuff.  there is a 2 mm "black-ish" space surrounding the shaft portion of the implant, extending around its end for at least 3-4 inches.  that's the major change... and it usually means you-know-what.  it is very likely an infection as the only other option is air and he didn't 
agree with me that maybe i hiccuped and the air went down the shaft of my prosthesis into 
the humerus itself.  

he's a spoil sport.

the other changes were not "new,"  they were just "worse."  my rotator cuff is *still* missing!  it ran away and just left me with a bunch of painful calcium deposits, and they aren't even in the bone (since there isn't anything but titanium in that area now) but are sitting in the soft tissue.  ouch.  okay, so i thought it might reappear after it first ran away back in february 
-- i have always been fond of my rotator cuff tendons.

come home to moi, my tendons!

shoulder humor.  sad.  

anyway, there's been a widening of the space between the "ball" and the "shaft" parts of the shoulder prosthesis as a result.  it was also just very... i dunno... irregular looking.

he did not even push the range of motion of the arm -- first, he sees what you can do, unassisted (which was almost nothing), then he asks you to relax it while he moves it.  he almost never STOPS when you say/yell "stop," but today he barely even tried to move it.  second, he asks you to put your palms together and then he tries to hold them together while you attempt to move them apart. we did some weird imaginary form of that part of the exam. then everyone stood around and made noises-of-sadness-and-pity over the progression of the CRPS in my arms and legs.  {rolling eyes toward heaven}  shoulderman won many points by asking "why did you shake my hand?" now *that*, my friend, is CRPS/RSD*awareness*.

there *may* be more fractures up above as well as perhaps in the shaft.  i don't really care about that but he does, because of the fact that the next prosthesis -- IF there will be a new one -- has to be a REVERSE prosthesis.  to understand how different that is, here is a normal prosthesis: 

and this... is a "reverse" prosthesis. The Tribunal of the Holy Office of the Spanish Inquisition is credited with its design:

anyway, for today, he gave me a shot of [what else?!] steroids and some local anesthetics.  he asked me to have go-to-guy try to get some sort of results from the CT scan they did while i was in the hospital last week.  in other words, like me, he doesn't believe that they "didn't scan the left shoulder."  i hate to be the queen of conspiracy theorists but hell, i was *there* and i *know* they scanned it.  the a-holes just didn't want to be suspected "liable" for even more damage to this rock star of a body than they already have been.  grumble, grumble, curse, curse.  they should know that if i haven't sued them by now, they are not gonna get sued... i've never sued anyone in my life. 

i should have taken every available penny from the bastards back in 2002. 

the plan is that i am going back in about 6 weeks -- if i can wait that long.  i get to go in early if i reach what we are calling "desperation."  i wanted to respond to that escape clause with something really snarky, but then realized i'd probably burst into wimp gimp tears.  he wants me to hang in there until after i finish the antibiotics i started last week, then get back on the other antibiotic that go-to-guy is experimenting with... after he chats with go-to-guy and orders maybe another aspiration of the joint (i am against that... we have done EIGHT aspirations and NOTHING grows in the damn lab... why do we keep doing them?), after more imaging studies... and then he will likely remove the current prosthesis and insert one of those spacers laced with antibiotics.  

why? because he can't put in any sort of prosthesis if there is infection.  the spacers can stay in for months, tho the last two he implanted on that side had to be taken out because they were causing fractures and blahblahblah. in other words, i may end up with a series of spacers.  i also have a pretty good chance of ending up without a shoulder at all.  but we won't go there now.

this is what a spacer looks like (modigliani design):

 he gave me one like that once, but he also made one on the spot in the operating room by shaping it himself out of surgical cement.  that, i would have liked to witness!

well... this is way too long, sorry.  my brain is on overdrive, my temp is 101, and i feel like my legs are aflame!  woo hoo!  it's party central in the manor tonight.

i hope you are in your jammies, warm, cozy, and chilling out.  tell brenda i send her good wishes and hope she kicks cancer's big fat ugly butt.

oh -- when we got home?  we found rampant destruction... since dobby and marmy fluffy butt both came for the butt whacks they love so much, it was easy enough to infer that the guilty party was one buddy the kitten, whom we found hiding in the dirty clothes hamper.  more on that in tomorrow's tome!

smooches galore and fruited loops,

moi 

NOT a marxist mammarian agenda

i just got home from the orthopedic surgeon's office and so, of course, i need to blog!  but instead of writing about my *awesome* early morning experience {sarcasm, intended}, i will share this email from Grader Boob, one of my brother-units.  he'd be the one who teaches, hence the sobriquet.  my other brother-unit, one Tumbleweed. is equally brilliant and could, i am guessing, offer up some kick-ass literary observations.  i think, however, he might become seriously depressed over the quality of his students' writing.  you gotta develop that specific grader-boob callus.

i don't want you thinkin' GB is afflicted with man-boobs or some other strange boobopathy.

no, he's just a grading fool!  seriously, he's the guy you want on the receiving end of your compositions -- if you're a serious writer and not entirely grade-obsessed.

really, Dear Reader -- if you are parent, sibling, or friend to a student in a college writing class, you might want to share Grader Boob's commentary with him or her.  being something of a former grade-boobing prof, i can appreciate what he's put together.  i wish i had had it, en français, back in those mammarian good times!

of course, you know that i espouse (or, according to some numbnuts, spew) a Marxist Mamamrian Agenda.

Howdy--I'm here, but I've been grading/marking online papers so I flee the computer whenever I can. It'll be this weekend before I can sit down and correspond.
[meaningful expressions of undying filial affection, deleted]
Love to thee and thine.GB
PS. I'm running a bit angry today, for I'm getting an inordinate amount of complaints about my grades from the online Lit class, so I gussied up the following, revising an announcement I posted years ago.(Hope it works!)

About the grades...It is a student’s right to complain about grades, but I’m going to institute some guidelines to see if we can give the complaints a purpose.First, let me clear up some misconceptions about the class, my grading in general, and the grading for this course:

•       This is an ENG 311 course. In signing up for this class, you are committing to attempting 16 weeks’ worth of reading and writing in half the time. Believe me, I have the utmost respect for anyone willing to try that. It is a hard task. But, at the end, should you pass, you’re given credit for the whole class, not 1.5 credit hours. Therefore, this class’s writing is held to the same standards as an on-campus class—as it should be and as I’m required to do. (If you’ve had a professor hold you to an easier mark, then that professor has devalued your degree pursuit.)

•       Some years ago, when the XXX English Department charted the grades of its faculty, my grades fell exactly smack dab in the middle. So I’m not holding all of you to some excessive standard, unreachable except by the finest of writers and thinkers. I grade this material just like I grade all ENG 311 essays.

•       I grade the work in front of me. In the past, I’ve had classes in which the lowest grade was a C+. I’ve also had classes in which there were no As. If everyone writes an A paper, then I’ll give that grade to all. I grade the work in front of me.

Now, should you want to talk with me about your grade, here are some recommendations:

•       Re-read the original assignment description/prompt found on your module. Make sure you’ve done what is required. If you’ve not met a requirement, I typically point it out in my comments on your work.

•       Read the comments. The points I note there—especially those dealing with focus, development, organization—are the key elements to any re-thinking or revising of the paper. A paper without a strong focus/thesis is doomed to wander. A paper underdeveloped is missing the logical backing drawn from a close reading of the text, and sometimes this paper fails to meet the length requirement. A paper’s organization should progress paragraph by paragraph, with clear viable links helping your argument—thesis—ring true.

•       Having read those comments, you should show me specifically where I’ve not given you credit for something in your paper. If your paper has a real thesis which I’ve missed, point it out to me. If the structure really builds when I say it doesn’t, show me the error of my interpretation. If your conclusion does more than just restate points you made moments earlier, point it out. Make sure you’ve got a real case, though.

•       But don’t mention your prior grades, your effort, or your life, for these play no part in an essay’s  grade. I'm grading the work in front of me.

Hopefully, this clears up some of the emotion and lets you focus on the remaining readings and writings.

after too many words, a balm...

it seems suitable, after "too many words," to listen to a perfect pre-existing expression of... things:

too many words

in my previous post, i was unduly cavalier about my odd relatives.  my first electronic act upon getting home from the hospital friday evening was to jot down [or laboriously peck out on my lilliputian keyboard] an email to the best brother-unit a sister could wish to have. that's right, i found myself unleashing a week's worth of pent up emotion all over sweet Grader Boob -- the self-imposed and preferred nickname of my english professor sibling, forever wading his way through a swampy, gassy pool of purported essays and research papers.


he's been in the game a good 30 years, has Grader Boob, and still spends 45 careful minutes on 2-3 page bits of underclass erudition.  he provides the most helpful and attentive commentary these youthful writers are likely to ever receive. i'm not saying that 'cause he's my brother-unit;  i'm also saying that because his standards are not simply maintained over Lo, These Many Years, they are, if anything, more stringent.  it's a sign of hope for those of us who aren't as convinced of a cheery future based on what we witness in the classroom. 


you know, stuff like having your hip broken by a student because you were the only physical barrier to his escape from the police officer hot on his heels. and having your students steal your walker when you make it back to work after the hip replacement!  stuff like that.


yeah, i dunno why, but that large "instance" keeps coming back to haunt me and will always inform my assessment of today's yutes.


of course, that was my experience at the level of high school instruction.  there weren't, thank goodness, any corresponding moments of physical violence in my 19 years of university teaching.  


no, those years had other offerings designed to maintain a steady state of depression. 


you know, stuff like having college freshmen and sophomores assert that the crusades date from the early 1900s -- before the american civil war of the 1950s -- and after world war II, that awful conflict of the mid-nineteenth century.  this academic high point occurred during my oh-so-brief stint as a latin teacher.  decades of research in determining pedagogical best practices have shown that the intermingling of disciplines, in this case ancient history and classics*, leads to student confusion and decades of lower back pain.

* in case you were wondering just what sort of radical latin class i was conducting by my unreasonable expectation that tomorrow's leaders might see parallels between humanity's tedious insistence on holocausts in various guises across time... it was a freaking warm up exercise designed to seamlessly review a few expressions with bellum and to introduce a short essay assignment.  instead, my brain exploded.  for those of you interested, these chestnuts were to be the inspiration for those 2-3 sentence-long masterworks:

bella horrida bella  (Virgil)

bella detesta matribus (Horace)

bellum omnium in omnes

bellum domesticum 

Ibis redibis nunquam per bella peribis (Oracles of Dodona) [a teacher's favorite, this one]

honestly, i've no clue why my mind went on this bender but, as you know, the guiding philosophy here at elle est belle la seine la seine elle est belle is "whose blog is it, anyway?"


i blame everything on the nefarious influences of Grader Boob.  


has he made any suggestions to moi-même, as to how my writing might be improved?  yes.  one suggestion, repeatedly -- making me worry over the possibility of early onset dementia.


hmmm?  what?  oh... right!  "too many words."  

***  **  ***  **  ***  ***  **  ***  **  ***  ***  **  ***  **  ***  ***  **  ***  **  *** 

hi boob,

i spent the week in the hospital and am in a foul mood.  

you have been warned.

it was awful but could have been much worse.  i had the headache from hell, nausea and vomiting, topped off with more of a fever than "normal." called my MDVIP go-to-guy doc last saturday, taking care not to phone until he'd had time to get home after temple.  even though he encourages patients to call whenever there's a real need, i hate messing with anyone's sabbath.  god might get pissed.  so go-to-guy answered on the second ring and informed me he had just arrived in barcelona, to which i replied, "but you can still call in a prescription, right?"  


[i came close to demanding why he had not been available six hours earlier, that being the time differential between tête de hergé and spain, but managed to hold my tongue.]


so that's why his partner, dr. k, was on call when i decided i couldn't take this particular constellation of symptoms any longer.. then dr. k's aunt up and died and he flew off  to new york, making the time differences for my doctors simply untenable -- fred put one watch on each wrist but that only made things worse. 


i booked passage on the queen mary, anxious to keep up with the jet-setters in a manner befitting my socio-economic realities. but due to partner-man's in-flight telephonic insistence, we ended up at st. jo's emergency room instead.


why, yes!  that *is* the very same hospital what gifted me with crps to begin with, by a well orchestrated Sentinel Event back in 2002. had i lost my mind, returning to the scene of their crime?  well, yes, i suppose i had lost my mind... to a mother of a headache (imagine me, whimpering while rocking back and forth, to and fro...) and several days of high fever and nausea.  he tricked me, that wily partner, into expecting just a bag or two of fluids and some cortef.  


they wouldn't release me, of course, and as i was being wisked around the corridors and back alleys of that infernal place,  i decided to keep an open mind and a closed mouth... 


...until i couldn't any longer.  i managed four whole days without a single smart-assed comment, without any hint of the fear for my life that emerges whenever i'm within a nautical mile of that place.  did the fact that i was under a gag order by their risk management department legal eagles assist me in holding my tongue?  nope.  forgot completely about it.  fred's eyes bugged out.


how am i to remember that the murderous staff there cannot be held in any way accountable for their crimes against humanity? let's review, darling boob:  pounding head, empty and spasming stomach, high heat, extreme pain -- much of that pain from the pre-existing crap for which they are largely responsible -- adrenal (and renal!) insufficiency, lupus, avascular necrosis, osteomyelitis, and a partridge in a pear tree.  i think four days was admirable.


i strongly suggested discharge home to the hospitalist who rounded this morning. the bottom line?  despite kidney and sinus infections that were piddly and refusing to grow in cultures (that's my leitmotif), the ID docs decided it was my left shoulder at fault and ordered a CT scan of the whole area -- head, left shoulder, kidneys, hips, the squatters in my estomac, etc.  they even seemed to have clear ideas of why the pus in my shoulder wouldn't grow in the lab -- blaming the phenom on one of two sort of ordinary bacteria that have become resistant to antibiotics. since i am immunosuppressed, these average-joe sorts of bugs can be a problem. not the zebras doctors have been chasing for the past three years, but good old pedestrian plow horses.   


so we were all anxious to get the CT results.  i actually entertained thoughts of getting cured of these accursed bone infections! drum roll, please... because radiology, despite discussing the areas to be scanned with me, despite the written orders, despite doing preliminary imaging to make sure all was fine... radiology reported that they failed to scan the left shoulder.  


remember the port i had put in some time in march, before the ketamine infusions?  well, it has never been accessible for blood draws.  fine for infusions, but not available for anything else.  [grrr.]  the nurses, in attempting to explain to ID why some labs were not done, blamed the confusion on a member of the "iv team" who was supposed to draw the blood from my port...  i may have, kind of, sort of, sat there like a silent lump while the lying liars lied.  


yes, scientific method remains at its finest at st.jo's;  the brainiacs are still at the wheel.  


the thing that sent me over the edge, however, was the damned rsd/crps.  


fred and i have tried every trick we can think of, from making cute little signs for the bed, distributing informational fliers, having doctors write entries in the chart,  putting notes on the door, even suggesting it as a great topic for an in-service, etc. 


all we are asking is that folks not touch my legs and ask before touching my hands.  we have never had a positive response.  tell a nurse (or doctor or phlebotomist or tech) not to touch and you engender, apparently, that very urge in them.  the unfailing pattern:

me:  please don't touch my legs.  thanks!

health care professional:  of course not! [pokes at feet in order to feel pedal pulses, grabs calves for some unknown reason]

me [from the ceiling]:  DON'T TOUCH MY FREAKING LEGS!

health care professional:  you don't have to get nasty.  all you have to do is tell me nicely, profderien. [hates me for the remainder of my stay]

common variations involve "oh, i didn't think you meant me" and "i can't help it if the stethoscope around my neck swings down and hits your feet."

very, very, very disturbing?  since the declaration by the state that their screwup in 2002 was a Sentinel Event?  i kind of thought they would know by now what CRPS *was*.  it was disheartening in the extreme to find only two doctors (the ER doc and an ID doc) and ONE nurse who knew that it is a central nervous system disorder involving severe pain, allodynia, movement disorders, etc. -- just, in general, what it is about.

everyone else said yes when i asked if they knew what crps/rsd was (i unpacked the acronyms for them as well).  these folks all proceeded to then do you know what, leaving me on the ceiling again...  i cried, not from the pain, but from pure sadness and frustration.  the doctor who was in charge kept telling me it was a combination connective tissue disorder and cellulitis.  she apparently wrote that in the chart and the nurses all thought it a great quote.

my favorite moment?  two nurses leaning over, their elbows propped on the the footboard of the bed, staring at my feet.  one of them has a big smile on her face, and keeps advancing her index finger toward my swollen, dark-purple and decaying right foot, saying, "i can't touch this, hmm?  what would happen? i seen this before, ms. profderien.  this here is cellulitis.  you got to keep it clean. what would happen if i touched it, hmmm? we need to scrub this foot." she actually winked at the nurse next to her.  yep, she's gonna wash off discoloration from lack of blood supply and i shall be cured by soap and water.  i confess:  i didn't bother with please or thank you, or if you don't mind... and went directly to cursing at her.

okay, i feel better now.  
i guess i let things build up a bit too much.
okay, so maybe tears are still running down my moon face.

the ID docs want me to see dr. d (ShoulderMan!) asap.  it just so happens that i had already made an appt for next week, because the shoulder was getting pretty awful.  the best advice, though, was "go where they know you, know crps, and until you get there here are some antibiotics, stay in bed, but come back to the ER for a fever of 100.5 or higher." 


at that moment, the tech came in to check my temp, and it was 100.7!  we all had a good chuckle and then i went straight home where i promptly threw my thermometer away.  really.  i did.

i wouldn't mind one bit being something of an ambassador for crps, because it is very odd and despite not being all that rare, is something rarely encountered by your average medico. i am, for instance, my MDVIP go-to-guy doctor's only crps patient in 30 years of practice.  so i had to become an expert -- a dread occupation -- in order to get any kind of decent care. now, of course, go-to-guy is a crps pro.  


but to discover that the hospital that compounded error upon error such that crps was the end result has not even taught the staff to recognize it during the nine years since the sentinel event... leaves me tired, depressed, destitute -- and angry.

so much so that my dear brother has to field another rabid communication in a litany of rabid communications.

fred has had it,  is very tired -- of me, of everything.  i don't blame him at all.  just wish i could just wish it all away.

let me know more about classes and your writers... are you enjoying the reprieve from freshmen? i wish you knew how good a teacher you are. 

love,

your sister-unit, the gimp

SENTINEL EVENT: “An unexpected occurrence involving death or serious physical or psychological injury, or the risk thereof.  Serious injury specifically includes loss of limb or function.  The phrase, 'or the risk thereof' includes any process variation for which a recurrence would carry a significant chance of a serious adverse outcome.  Such events are called 'sentinel' because they signal the need for immediate investigation and response.”

My apologies

Dear Readers, Friends, and Odd Family Members --

Well, that greeting sounded nice in my head... but I guess it is too full of assumptions.  Then, O Misery, I would have to explain those assumptions, and would lose all my "Readers," most of my "Friends," and definitely the majority of those oddities known as blood relations.

So I shall keep it brief.

I just got released from the hospital, an unexpected stay, to say the least.  Nothing was accomplished and despite days of truly dubious treatment, I am home feeling about as bad as I did seven days ago, when the detritus hit the fan.

O, how I love the Manor and all of its art and tapestries, its bizarre twists and turns and unexpected staircases.
O, how I love Fred.
O, how I adore the Domestic Staff, whether genetically pre-determined as Marlinspike Hall servants or whether servants by the exercise of good old fashioned Free Will!
O, how I prefer The Big Round Bed with my Big Old Quilts, washed into soft submission years ago.
O, how I missed the Feline Remnant... all three demanded immediate brushing and kisses.  It's nice to feel needed, no matter how that need comes.

But I did pick a nice title, I think.  I do apologize -- for neglecting visitors to elle est belle la seine la seine elle est belle, and neglecting people I care about, the two sometimes not being mutually exclusive.

At least I can promise that my time spent attached to i.v. solutions and at the mercy of medicos was not a total waste.  I feel an onslaught of blog posts coming on...

Hillbilly Handfishin' and Some Good News for Kate! Woo Hoo!

Kate, 9.13.2011, "Waiting to hear..."

Good news for the McRae family and their many friends and supporters (We're everywhere!):  Daughter Kate's MRI yesterday was unchanged from the one in July.  Her mom Holly explains in her journal post on CaringBridge how difficult it is to plan treatment in this type of cancer after remission.  They've decided to continue her current chemo regimen for a year, contingent on continued good scan results.  Her next scheduled scan is in November.

Her father Aaron tweeted yesterday, as they faced the anxious period of waiting for results:

Hoping @hollymcrae and I can watch another episode of 

'Hillbilly Handfishin' to distract ourselves tonight!

{rolling::eyes}
Say it ain't so, Aaron and Holly, say it ain't so!

This whole family is on a journey and so here's a shout out to Kate's Most Excellent Siblings -- Olivia and Will.  Maybe the three of you can influence your parents' television choices?!  As always, Kate, you are very special and much loved by everyone here at The Manor.  Keep up the great work in school and at therapy.  I so much admire your good attitude, too, about chemo and all the testing, appointments and stuff.  My dear friends Captain Haddock and La Bonne et Belle Bianca Castafiore are also big fans of you and your family, and want to send along their best wishes.  The Captain is thinking of naming his next miniature pink submarine The McRae, and Bianca loves to sing "Little Light" in the shower...




Uploaded to YouTube by Brian Wurzell on Jul 12, 2009

This song was written by Audrey Assad, a Nashville Singer-Songwriter, during an online Global Night of Prayer for Kate McRae. The lyrics came in one pass that night and the chords/melody came the following morning.

 Little Light

(Audrey Assad)

                                                                                                                                                 Look at all the angels watching you

They’re singing songs that we have never heard

Their voices ring like bells over the mountains

Oh, if only we could hear their words

God is near, little girl.

                                                                                                                                             Your eyes are brilliant, deep sky blue.

Your quiet wisdom is an evening song.

The angels must be breathless at your beauty

Like the world catches its breath before the dawn.

God is near, little one.

                                                                                                                                             And Jesus bends to hear you breathe;

His tender hands are holding you tonight.

His heart is ravished when you look at Him,

and oh, the endless mercy in His eyes;

God is here, little light.

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.

Me, and Damien Walters; Damien Walters and I!

parkour:  The art of moving through your environment as swiftly and effectively as possible using only the human body.

You should have seen me. You would have cheered.


It was the perfect storm of good things:  I slept an incredible four hours straight, enjoyed a balanced, rich cup of coffee in the predawn, then relaxed and laughed with the flitting, fighting chickadees.  


And, if I do say so myself, I was quite nattily dressed.


Yes, there were the normal oddities.  La Bonne et Belle Bianca Castafiore was, inexplicably, curled up on the lower shelf of the kitchen block table, covered with an antique Point de Venise lace tablecloth.  Granted, she was sacked out in a kitchen that I don't normally use, as the replica of the Karaboudjan's galley is not my idea of the ideal place to prepare or consume food.  Still, for an early morning view of the cluster of spruce trees and the bud- and canker- worms so beloved by my beloved chickadees, nothing beats the view out of the galley's over-sized portholes.


Right. Well, anyway, things began well.  That's all I am saying.
I was feeling good; I was feeling lean and mean.


I had an early morning cardiology appointment and let's face it, early mornings are not exactly what we are known for around here.  Fred and I even retrained the circadian rhythms of all the livestock and domestic animals so that their days don't actually start until mid-afternoon.


Despite my penchant for equating left with west and north with straight ahead, we had an uneventful trip into Lone Alp. 

My MDVIP Go-To-Guy referred me to a new cardiologist this year.  It's not that the old one was in any way not a great doctor, he was.  Is.  No, it is more, for me, that I just cannot tolerate dealing with anyone or anything associated with the CrapAss Hospital that has so contributed to the demise of my earthly usefulness.  Not that I've given that much thought or anything!  


I remember, in fact, my Former Cardiologist with great affection, for he once told me that I would not die so long as he was taking care of me.  I loved that brash idiocy.


Unfortunately, ever since he actually had the chance to snatch me from the jaws of death, he has been caught up in the evil machinery of CrapAss Hospital.  Because of the great Shoulder Adventures of the last three years, I've only gone in to get an echo done, and only once, and did not deal with the doctor at all -- except to have one of his partners bless me out over the phone.  (When he was done blessing me out for having skipped a few echos, he told me not to worry about my aortic dilation blowing up, "because you will never see it coming...")


Oops!  Oh, well!


So we cruised into the Free Gimp Parking, gave Ruby the Honda CR-V a pat on the butt, and found the office with nary a wrong turn and not a bit of confusion.  [We don't do well in new office buildings.  Sometimes we duck into the first cozy looking waiting room and pretend we're in the right place.  It's usually the urologist's or the plastic surgeon's joint, though, and they catch on pretty quickly and toss us out.]


The New Cardiologist's place is incredibly well-organized.  I didn't realize how much I appreciated that until I was there, in the midst of streamlined forms and efficient people.  Everyone was so good at what they did, and they communicated!  Not just with me and Fred, but with each other.


Excuse my excitement.  Little things just send me!


Now... here is the part where it's all about me, and Damien Walters, Damien Walters and I!  That's this post's title, in case you've been distracted. 


I've long been a fan of parkour, then free running, free styling -- the martial arts, too.  As my body has crapped out and essentially imploded on itself, I've traveled beyond this body via the Internet and television, finally carving out for myself niches of the imagination.  


On one of my baseline days, I'll cue up the greatest of tennis matches, admire the most powerful and musical ballet dancers, and I let my body go.  It's enjoyment.  It's distraction.  For a few years, I could even pretend it was muscle memory!


On intolerable days, I might visit PopThatZit and replay Pete Popped a Pustulant Pimple ten times in a row... or I might not!  But I will *always* end up watching Damien Walters, usually his showreels, one right after the other.  I fly, jump, fall, push, pull, defy gravity and embrace gravity, all at the same time.  I feel no pain and my tendons never retract, my muscles never seize.  I'm lithe, light as air, fast as lightening.  Pliant, compliant, but steel, I am jiu-jitsu.


When I was escorted back to the echo room, this morning, the first thing that jumped out at me was the behemoth of an exam table.  It looked as tall as a freaking elephant.


The nurse asked me if I could change into the gown on my own.  "Sure!" I said.  She asked if I could walk to the exam table.  "You betcha!" I crowed, adding, "I brought my magic cane, even. But then you are out of luck, because there's no way I can get *on* it." 


"Not even with this stepladder?  How about if I hold you up?  How about if you hang onto me?"


Because of the instability, swelling, and pain in my ankles, knees, and hips, I cannot step up or down.  The last time I tried to use one of those stepladders was in a radiology department and the tech did not entirely believe my protests that I couldn't trust my legs.  I ended up on the floor that day, and pretty mad about it, too.  I have fallen quite enough in this lifetime, thankyouverymuch.


She picked up the phone to call for the nearest Big Guy, so that my own petard could be hoisted...


But something of the spirit of Damien Walters showed up in me, today, unexpectedly.  I told her that, no, we would not be needing assistance, and that, yes, I could do this if she wouldn't mind parking my wheelchair somewhere out of the way once I vaulted out of it, pirouetted in midair, onto the beastie table.


She looked a tad bit skeptical.  She was staring at my legs and wincing.


It might have been choreographed by Balanchine.  Danced by Edward Villella.  You'd easily imagine that I was inhabited by Martina, Chris, Monica, Hana, and Steffi, tour à tour.  


But it was in every way inspired by Damien Walters.


I planted one leg here, the other there, becoming my own source of symmetry.  I plumbed the potential energy of every surface.  Briefly, I was here, then there, now attracted, now repelled.  Once, twice, I was standing --sideways -- on a cabinet.  Thereafter, I was free of surfaces altogether.


I usually crane my neck and nervously watch the progress of the echo -- it's kind of neat to see your heart as it beats, to listen to the woosh-woosh.  The nurse, after verifying that I had survived my feats of athleticism with bones and internal organs intact, was all business.  She reminded me that talking, coughing, and such interfered with the test, so I stopped talking, never coughed, held my breath when instructed, but mostly just ran Damien Walters' videos in my head.


In a first, I managed to crack up both myself and the test operator, and did, I guess, disrupt things.  They record the sounds produced by various parts of the heart, concentrating, I think, on the valves.  I heard a series that were familiar from past tests... and then, out of the blue, came what can only be described as Island Music.  "They're having a party in there!" came out before I could stop myself from talking.  Seriously, we are talking ukuleles, tambours, maracas, and seven kinds of guitars.  


Go, mine heart, go!


There were a few abnormal results from the echo, but none of them were new, none of them were worse, and one of them was actually better.  I'm really happy with this new place.


The nurse was on the warpath as we left, threatening to quit if she wasn't given an adjustable table for her echocardiogram patients, going on and on about some "debilitated" people of her acquaintance.  Whoever they are, I hope they get better soon.


And I hope the cardiologists keep that massively tall, unwieldy table, maybe tucked away in some storage room for when I come back next year.  


I haven't had so much fun in I-don't-know-when.