My Normal: Am I There Yet?

I'm trying like crazy to return to "my normal."  

Garderobe, Peveril Castle, Derbyshire

This is a term now in my daily lexicon -- it used to be set apart.  (In that there field, yonder, a little farther, a little farther, more to your left -- LEFT, I said -- yep!  Right there!  Good job, Dear Reader!)  It used to be confined to exam rooms.  "So, would you say you're close to 'your normal'?" might be an insightful question for Dr. Shoulderman to ask after giving me a prosthesis, taking away a prosthesis, putting in a spacer, taking out a spacer, or removing the shoulder joint altogether.


The only intelligent answer is a one-sided shrug and a heart-felt muttered: "I guess so." Or just omit the shrug.  We never wanted to hurt Dr. Shoulderman's feelings.

It's that time that comes every three years or so.  My private long term insurance company that pays me 60% of my pay, post retraction of any bit of money due any agency (even my union dues!) at the level of pay I was receiving in the year 2000.  The following year, of course, was when Fred had to stop working because "someone" had to be here to call 911 in case I didn't feel like it. [Ha?]

I'm pretty sure they surveilled us and I bet that was a grand old time for some poor soul.

Anyway, now it's pretty much as my go-to-guy MDVIP doctor promised me it would be:  "No one, ever, is going to question your need for disability coverage.  This is permanent, this is not going to get better."

He actually does have a sense of humor, this devout man.  I've heard him laugh, even inappropriately (the true test of mental health).  I've seen him hold his head in his hands more, though.  And since he and his partner left their huge group practice to go off and practice excellence, he's felt free to say he'd pray for me.

One of his best jokes yet?  I said, "I hope you had a good Passover." He responded, "Did you go to an Easter sunrise service?"

I about died laughing.

So first thing I do wrong this time -- and I'm back to talking about getting re-certified as a bona fide gimpette -- was not notifying the disability insurance company that my phone number had changed.  Oopsies. (I'm channeling Rick Perry.)  So when my "case coordinator" attempted to call, and got the old "disconnected" message, her natural assumption was that I'd grown new arms, legs, bones, and a better brain and had run off to Mexico, living high on Mexican hogs via that aforementioned 60% bounty.  Plus the extra pesos brought in by selling my mail-order drugs.

That's right. I -- me -- moi -- am a cartel.

I knew I was up to something!

Anyway, this is always a time of stress, in spite of my humor-possessing but humor-skewed beloved doctor's assurances that I am "totally and permanently disabled." This is always the juncture when the neighbors might have mailed the company that tell-all video of Fred and me waltzing on the veranda, or me jogging off to teach my early morning yoga class at the community center eight miles down the road.

Hey!  Did I tell you that I have new whatchamacallits?  Elbow crutches, you know, with the cuff the fits on your arm?  Two of 'em!  One for each side, and yes, that part is tricky.  The goal is to be able to stand for three minutes (still don't get how anyone chose "three" as a goal) which I absolutely CANNOT do -- BUT I can walk around for almost that long!  Maybe half that long!  So long as I am within crash reach of the bed or wheelchair!  It's actually pretty cool, even if annoying know-it-all people around me keep changing the various length settings on the suckers.  Fred has never been man enough to accept that I am way-y-y taller than he is.  Way-y-y.

So the forms are here for me to fill out.  I keep moving them around.  I doubt I'll be able to write legibly.  Maybe I can type out the answers, print them, and attach that to the original document?  Or do they want to see me scribble?

On the phone -- we did "connect" -- Gladys, or whatever her name was, seemed thrilled that I still had the same doctor as three years ago, as six years ago, as nine years ago.  "That makes it easier!" she crowed.
I had to pause as a vivid image of the man, his head gently knocking against the doorframe, overwhelmed me.

Like Fred, he had told me he was "overwhelmed."

Neither of them know it, but both of those moments were... sea change.  Pearls, eyes.  But it doesn't read that way, seem that way, exist that way, for Gladys.

I'm still having gastrointestinal bleeds on an ongoing basis, particularly when I don't follow the strict instructions not to take the drugs which help my bone pain the most.  I am doing so less and less, until the next time I cannot use my legs due to pain, cannot straighten them, and definitely cannot stand on them.
Here's something funny.  You know how people lose socks?  That great eternal mystery?  I lost the ankle brace that was making my right ankle fracture bearable.  No, I am NOT kidding.  And I always thought the punchline was that socks had PAIRS.  I only have the one sweet, little brace -- it has no sibling.  My theory?  It's here.  Somewhere.  Yes, that qualifies as a theory.  What do you want?  There was a thief in the night (swam the icky algae-afflicted-as-never-before moat, jumped into Marlinspike Hall via a well-used garderobe -- eww! -- bypassed the small golden museum quality pieces scattered about and took, instead, my damn ankle brace?  Here's the blatant flaw in your version, bud -- I am not sleeping, not since the return of the suicide-inducing spaz attacks.  Even the cats are staying away.  And since I've started guessing at how much insulin I might be needing, I've been in a jolly blood sugar roller coaster kind of mood.  A bit of advice for you:  don't take insulin, then half eat half a salad.  You might be unlucky enough to fall asleep.  I -- being forced awake -- simply transformed into Hulkette, snarling and green.  Fred did the bright thing and ran to get the jalapeño, red pepper-flaked with Thai chili sauce brown rice to shove down my throat... running right past the left over holiday peppermint candy.

What I dislike most about episodes of the sort?  I get paranoid afterward.  Fred must hate me.  The Domestic Staff seems distant.  Bianca has a sudden extra shift at the bar (the opera was among the first and hardest hit by Tête de Hergé's plunge into forced sequestration -- damn this proclivity for copying the politics of governing exhibited by failed and dying systems!).  Buddy came, but decided I'd be best comforted if he deposited his Maine Coon ass right where my shoulder used to be.  Buddy left shortly thereafter, as in:  Buddy fled.

I dunno.  Am I back to "my normal" or not?

What?  You afraid I'll bite your freaking head off if you try and answer?

"Even in this nicke of time, this very, very instant."

I'm probably the only person in the northern climes running the air conditioner.  My initial excuse was that the air needed dehumidifying.  When that got the bald eyeball, I admitted to being hot.  Now it's getting a bit cool but I'm safely ensconced in comfy bedding, hoping someone else will discover how to use the thermostat.

Life with fevers!  Hot, cold, sweaty.  I want frozen fruit, no, wait, I want hot soup, with many spices and several of TW's dried jalapeños, for good measure.  Wait, hold the soup, and gimme an ice pack!

But it's been kind of a nice day.  Pain sitting at a mere 6 out of 10 (whatever the heck that means) and Buddy has discovered all my old cashmere leg warmers.

Cashmere leg warmers, when sprinkled with catnip and then rolled into a ball, are objects of drooling adoration for Mr. Buddy.  And they're perfect for me -- I throw like a girl, so what better thing for me to be tossing about but bright red or sexy black cashmere leggings?  I am achieving amazing distances and Buddy is uprooting all the haphazardly strewn about area rugs in our chichi wing of Marlinspike Hall.

I have quarantined myself in our cozy little wing because the staff is coughing and sneezing and generally making any gross respiratory-related, gravelly noise possible.  Roughly 80% of the staff has the flu and the other 20% are apparent mimics.  I'm not letting those walking microbes across my line in the sand... not for nothing.

Every year, my MDVIP Go-To-Guy and I have the same conversation about the flu vaccine.

Oh, I probably haven't mentioned that I had the Grand Pooh-Bah of MDVIP Appointments last week, last Thursday to be exact.  I dread these annual affairs, and they always turn out... fine.
More on that later.

Back to the recurring flu vaccine conversation.  Back in 2005, I was an advocate of the vaccine, thought nothing of it, was very grateful for it, even though I'd had the flu a few times after getting it -- either getting a variant not covered by the flu-guessers or bad timing.  That year, I'd just had my right shoulder replaced by none other than our beloved ShoulderMan -- it was our first meeting, back when things seemed much more straightforward!  I had a few problems afterward, weird stuff, of course -- a necrotic lymph node right next to the surgical site, and a pretty severe anemia, despite having had a top-off at the hospital prior to discharge.

This was before Go-To-Guy went all MDVIP on everyone, back when he was one of the founding docs of a pretty large, very busy practice.  I came in because I was inexplicably getting weaker, and  blahblahblah we discovered I was just anemic.

"While you're here, why don't we give you your flu shot?  I know you're a little run down, but what could happen?"

Please pay attention to that phrase: "what could happen?"

Informed consent, wham, bam, thank you super nurse, I got my shot and we headed home.

Two hours later, I was deathly ill.  Fred, not always quick to pick up trouble, being a cheerful and positive kind of guy, went and bought the Mucinex that Go-To-Guy recommended.  And that's the last thing I remember until I woke up about five days later on a respirator, overwhelmed by the sensation that I had missed something.

Anyway, "what could happen?" became a catchphrase that reduces me and Fred to tearful hysteria.  It just cracks us up.

And Go-To-Guy wipes the story from his memory every year.  Psychic trauma does that to people.
Last Thursday, as he talked me into taking the pneumonia vaccine, he opened his mouth, which then sort of flapped around aimlessly, because you *know* what he was about to say!  It was almost the same situation as the phrase's début iteration -- we were dealing with being rundown from my stomach bleed, with a low hemoglobin (but so much better, thankyouverymuch!).

I about fell on the floor laughing.  (No, I didn't.  That would have been... rude.)

There's been nary a hint of a problem from the vaccine.  But think carefully the next time you're tempted to gloss over potential pitfalls with a blithe "what could happen?"!

So... part of these annual MDVIP "physicals" is a prompt summary letter afterward to remind you of what you just talked about the week before.

The happy experience of discovering that my desire to be on "Do Not Resuscitate" status was not going to cause me or my treating physicians a boatload of upset or the need for reinventing the wheel -- well, I had not had the chance to even run it by my MDVIP Go-To-Guy Treasure of a Physician.  We had exchanged emails, but I was always in a snit over something, over-the-top, and he's a born optimist.  So I was never sure if we were talking about the same thing.

That my last hospitalization went so well, that this potentially thorny issue proved thornless, had nothing to do with him -- turns out, he didn't even know I had stayed as long as I had.

So last week, I let him know the day before the big exam that I was hurting a lot and would appreciate it if we skipped most everything so I could get home and rest my nasty bones.  We always need to go over meds and that takes a long time -- it's very useful and helpful, and it actually serves well as a guide for what is going on in each "system." As we discuss a drug, we discuss the problem, we make adjustments, etc.  We review my blood work, which, frankly, depresses me.  There is no way to dress up those results.

I couldn't bring myself to look at this kind man, or at his super kind nurse, and even say "DNR." But I found words, and delivered them with what I hoped was good humor and appreciation.

Here's the relevant paragraph from the letter I got today:

"Unfortunately, you continue to have severe pain with your hips being the most prevalent at this time.  It is certainly possible you have an infection in one or both of your hips and it sounds like your left shoulder may have infection in it as well.  The elevated white blood cell count and the persistent low grade temperature support this fact but we really have not been able to eradicate this infection by the use of either oral of IV antibiotics.  As you said to me, I think right now the best approach is pain management and 'putting out any of the fires that we can.' Ideally, surgical resection of any hardware in your joints with heavy doses of IV antibiotics would be the only way to eradicate this ongoing infection but I am not sure you are willing to proceed with anymore surgery and frankly, I am not sure if your body could take much more than what you have been through."

He did hear me.  He always has.  I am really blessed.  Because I did not make it easy for my physician to hear me.  I flirted with the concept of "stopping," but then, when it got hard, I called for help.  Now comes the test.  At any given time, there are "fires," but which are the ones that threaten the foundation?  Which are just flare-ups, little grease fires that can be squashed with a cooking lid or stifled with a damp towel?  When do I just drop and roll -- with prayer or mute begging to the universe, or, if I am doing well, and have done my work, the hope of resolution?  And when, prayer, begging, and work done, but Death dallying, do I call for help, because it's just a straightforward blaze that a spritz or two will stop?

Were he not such a good guy, I'd ask MDVIP Go-To-Guy, but it's not his place to be asked, and it's not his place to answer.  It's not Fred's place, though it will be his to endure the results.

It's time for me to grow up -- it's the very nick of time.  I'm gonna have me a chat with Buddy.

NICK OF TIME

Origin

The English language gives us the opportunity to be 'in' many things - the doldrums, the offing, the pink; we can even be down in the dumps. With all of these expressions it is pretty easy to see what they refer to, but what or where is the 'nick of time'? It may not be immediately obvious what the nick of time is, but we do know what it means to be in it, i.e. arriving at the last propitious moment. Prior to the 16th century there was another expression used to convey that meaning - 'pudding time'. This relates to the fact that pudding was the dish served first at mediaeval mealtimes. To arrive at pudding time was to arrive at the start of the meal, just in time to eat. Pudding was then a savoury dish - a form of sausage or haggis (see also the proof is in the pudding). Pudding time is first referred to in print in John Heywood's invaluable glossary A dialogue conteinyng the nomber in effect of all the prouerbes in the Englishe tongue, 1546:

This geare comth euen in puddyng time ryghtly.

That seems a perfectly serviceable idiom, so why did the Tudors change it to 'the nick of time'? The motivation appears to be the desire to express a finer degree of timing than the vague 'around the beginning of the meal'. The nick that was being referred to was a notch or small cut and was synonymous with precision. Such notches were used on 'tally' sticks to measure or keep score. Also, during the 16th century, pudding began being used as the name of sweet dishes and they were usually served at the end of the meal. As this trend continued 'pudding time' being used to mean 'in good time' made less and less sense.

Note: the expressions 'keeping score' and 'keeping tally' derive from this and so do 'stocks' and 'shares', which refer to the splitting of such sticks (stocks) along their length and sharing the two matching halves as a record of a deal.

If someone is now said to be 'in the nick' the English would expect him to be found in prison, the Scots would picture him in the valley between two hills and Australians would imagine him to be naked. To Shakespeare and his contemporaries if someone were 'in (or at, or upon) the (very) nick' they were in the precise place at the precise time. Watches and the strings of musical instruments were adjusted to precise pre-marked nicks to keep them in proper order. Ben Jonson makes a reference to that in the play Pans Anniversary, circa 1637:

For to these, there is annexed a clock-keeper, a grave person, as Time himself, who is to see that they all keep time to a nick.

Arthur Golding gave what is likely to be the first example of the use of 'nick' in this context in his translation of Ovid's Metamorphosis, 1565:

Another thing cleane overthwart there commeth in the nicke:
The Ladie Semell great with childe by Jove as then was quicke.

The 'time' in 'the nick of time' is rather superfluous, as nick itself refers to time. The first example of the use of the phrase as we now know it comes in Arthur Day's Festivals, 1615:

Even in this nicke of time, this very, very instant.

more reasons to hang on to a good doctor

i've been meaning to write but things have been extraordinarily rough.  this morning, i forced myself to take care of some business, financial, medical, and the spots on the kitchen floor.  that kind of thing.

also, chasing one buddy the freakishly large kitten who had what we politely call a "cling-on," a game that he found hilarious, but which induced need of a nap in me.  the expedition was a success, i am glad to say, and buddy is now allowed back on the bed...  where his twitching, dreaming self suggests that he is reliving the fun of ridding his derrrière of stray matter.  his huge paws are twitching...

there have been many mentions in this blog of my MDVIP go-to-guy.  at my most destitute, i came up with the money to keep him as the center of my medical "team." he's just that good.  you can read about MDVIP HERE.  i cannot vouch for anyone save my guy, of course.  there are some things about the system that i still don't understand, but that's about average for me, and probably won't be an issue for smarty-panted old you, dear reader.

but i ask you, how many of you have doctors that would field an email such as this one, that i just fired off?  he's told me that he lacks time for extra research into biofilm infections and -- like everyone -- is stymied by my extensive CRPS.  that said, he's asked me to forward to him references and my "takes" on journal articles that my astute judgment deem possible sources of actual action.

gracious?  the man is gracious -- even if it is mostly the epitome of a polite and sympathetic blow-off.

this morning's email:

need order for annual echo + med adjustment + consideration for more medication adventures

profderien@gmail.com	2:15 PM (18 minutes ago)
to X, X  bcc: me

hi,

since insurance is at 100% coverage, i thought i would try to knock off any annual testing before the end of 2012.

• the most important thing to me is the annual echo. i called dr. w's office and they require dr. MDVIP's referral/order.  would you please ask them to call me to schedule the appointment? 

i also just pre-ordered most of my meds for the rest of the year, some rx have expired or need renewal, so i apologize in advance for the flurry of faxes that will be coming your way.  

• through experimentation, i've come to believe that taking two 200 mg generic plaquenil helps with bone pain better than just one.  if it is okay with you (and please pardon the experimentation), could the rx be changed to that dose amount?  i have never tried MORE than 400/day... ?  anyway, this is the rx# atmedco.com.  if you want me to stick to 200 mg/day, i surely will, in which case no changes are required at medco.  Hydroxychloroquine Sulfate Tabs 200MG  Rx# X

things are pretty miserable around here, mostly due to pain, spasm, fever, sweats, no sleep or too much -- otherwise known as "the usual"!  

• before the end of the year, i'd like to have my blood rechecked, if that makes sense, including sed rate and c-reactive protein.  i won't be returning to infectious disease dood who usually does the blood work as a matter of course.  would/could you order through quest, as there is one near our manor.

a piece of confidential health care cost gossip?  infectious disease dood's office has garnered over $275,000 since JANUARY.  can you say "wretched excess"? i know the drugs are expensive... but, please...

i am trying to do the groundwork on biofilm infections but have trouble concentrating and most of the info stresses the wonders of prevention, and the best ways to identify bugs from implanted devices (once removed) -- which is all irritating to someone who is on the other side of the thing.

• i am very interested in trying "drugs that work through TNF-alpha blockade" -- as there are many abstracts out there pushing for more studies of these biologics in CRPS -- going after the inflammation, i guess.  i am ready to skip the studies and go right to giving something an "off-label" try.  or maybe something like enbrel/remicade/humira wouldn't even need to be "off-label"?  how's about thalidomide?  i am wondering if my insurance would be suitably impressed just by a history of my c-reactive protein scores as justification... that'd knock their insurance socks off!
• i am also wondering if it is worth restarting "bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate" -- which we stopped because i had been on them so long. i've been off of them for well over a year now.  if yes, and they're all pretty much the same, my preference is for the cheapest! i'm doing my best not to bankrupt the country, though clearly, it is too late.
• if we scratch off methadone and ketamine, there are still some NMDA receptor antagonists i haven't ingested, namely amantadine, memantine, dextromethorphan (did you suggest this to me once?).  the discussions (anecdotal patient message boards) i've seen for dextromethorphan have a huge range of doses, but all recommend "compounded" versions rather than OTC which has alcohol in it.  amantadine seems to be used for neuropathic pain pretty frequently...  memantine's best study included a huge cohort of three patients, so i dunno... you gotta love the investment big pharma is making into CRPS.

Clin J Pain. 2006 Jun;22(5):425-9.

Pharmacologic management of complex regional pain syndrome.

Rowbotham MC.

UCSF Pain Clinical Research Center, Departments of Neurology and Anesthesia, University of California, San Francisco, School of Medicine, USA. mcrwind@itsa.ucsf.edu

Few randomized controlled trials of oral pharmacotherapy have been performed in patients with complex regional pain syndrome (CRPS). The prevalence of CRPS is uncertain. Severe and advanced cases of CRPS are easily recognized but difficult to treat and constitute a minority compared with those who meet minimum criteria for the diagnosis. Unsettled disability or liability claims limit pharmaceutical industry interest in the disorder. Many studies are small or anecdotal, or are reported on only via posters at meetings. Targeting the process of bone resorption with bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate has shown efficacy in three published randomized controlled trials. Intravenous phentolamine has been studied both alone and in comparison to intravenous regional blockade or stellate ganglion block. Steroids continue to be administered by multiple routes without large-scale placebo-controlled trials. Topical medications have received little attention. There has been considerable interest in the use of thalidomide and TNF-alpha blockers for CRPS, but no published controlled trials as of yet. Numerous other oral drugs, including muscle relaxants, benzodiazepines, antidepressants, anticonvulsants, and opioids, have been reported on anecdotally. Some therapies have been the subject of early controlled studies, without subsequent follow-up (eg, ketanserin) or without an analogous well-tolerated and equally effective oral treatment (eg, intravenous ketamine). Gabapentin, tricyclic antidepressants, and opioids have been proven effective for chronic pain in disorders other than CRPS. Each has shown a broad enough spectrum of analgesic activity to be cautiously recommended for treatment of CRPS until adequate randomized controlled trials settle the issue. The relative benefit of oral medications compared with the widely used treatments of intensive physical therapy, nerve blocks, sympathectomy, intraspinally administered drugs, and neuromodulatory therapies (eg, spinal cord stimulation) remains uncertain. In summary, treatment of CRPS has received insufficient study and remains largely empirical.

your natural reaction will be that some specialist somewhere should look into all this and do any prescribing.  excuse me while i giggle, because there just aren't any brave souls lining up to help.  i am going to try to make an appointment with the hawaiian-shirted neuro-guy , but am pretty sure he no longer wants to deal with me, either. this may seem an odd complaint, but he tends to over-medicate me...

sorry to cram so much into one email.  please take your time responding, there is no rush (except for scheduling the echo and correcting the plaquenil, if that's okay).  and if you ever want to charge me for an office visit as part of dealing with such an email, i'm good with that, you brave, brave doctor man.

take care,

profderien

Baking Scones or Rotting Turnips: You Be The Judge

SPEEDO

I *know* that it is poor form (Oops! Someone has been watching too much of the London Olympics on the telly.  I wonder what's for tea this afternoon.  Is that the aroma of baking scones wafting my way or is it the bag of turnips I let rot on top of a bag of potatoes and a sack of fresh garlic?  We better have some clotted cream and jam, either way.)...

As I was saying, I know that regaling you with emails is the lazy woman's blog tactic, but this is the best way to bring you up to date as to what is happening to moi at the moment.  I could lie and say that I just hate repeating myself, but, puh-leeze, my Readership wouldn't fall for that.

So... Youse Guys already know how much I rely on the judgment of my MDVIP Go-To-Guy, otherwise known as a pseudo-concierge set-up with a spot on (Heh-heh) internist.  Well, here's the latest, and please keep the info in mind should my blog posts get even weirder, if I'm not batting on a full wicket (ar ar!).

I think I may take a break from the shivers and do some imaginary badminton.  Or rowing.  But if I choose to swim around the moat, it'll have to done nekkid, as I've heard those swimsuit contraptions are nearly impossible to put on without Randy from Say "Yes" To The Dress.  Check out how hard it was for Summer Sanders... and then die laughing thinking of me trying to get even one thigh in the right spot of fabric.

FIRST EMAIL, FROM ME TO MDVIP GO-TO-GUY, YESTERDAY:


i had my PICC line pulled tuesday.  still having fevers, sweats, chills, spasms, the whole spiel.  dr.b was out of town, saw his PA jacqueline.  when i asked what the plan was now, i was told "there is no plan." of course!  what was i thinking?


is this slow drop in hgb/hct anything to worry about?  i know it's not enough to explain fatigue, but i am so tired.  they drew labs again this week to see if it is still dropping and i am to show up for one more appt next week.




7/3
HGB 11.1
HEMATOCRIT 34.4
CRP 1.27 (EXPECTED < .8)


7/10
HGB 11.2
HCT 34.9
CRP  10.49 


7/17
HGB 10.8
HCT 34.3
CRP 1.73


7/24
HGB 9.9
HCT 31.2
CRP 2.28 


i see dr.d today and will see if i can get him to somehow pave the way with next week's appt with dr. s's PA.  i expect that appt will be a bust, but who knows.


i don't know what to do about my eyes... dr. k probably thinks i've disappeared.  ID informed me that p. acnes is one of the most "catastrophic" of all infections after cataract surgeries (well, *of course* it is!) and that she probably will want some assurance that there aren't any p. acnes colonies hanging around.  right-o!


yesterday, i briefly blacked out twice, both times while walking to the bathroom.  each time, i was able to forestall any severe damage or need for 911 by simply landing against the wall, leading with my head.  so my head hurts, but i'm fine.  i knew that my brain would count for something one day.  if it gets worse, i guess i'll Pick-A-Specialist, probably dr. m.


i hope you had a restful and refreshing vacation.


what are the odds that i could get dr. d to come HERE, versus wickedly tired fred and cheery me hauling ourselves out to the airport office?


profderien,
laughing all the way to hell


SECOND EMAIL, FROM MDVIP GO-TO-GUY TO MOI, YESTERDAY:

The HGB dropping below 10 could cause some fatigue. The main concern with anemia is to be sure it’s not coming from GI blood loss.

Have you seen blood in your stools or black, tarry stools to suggest older blood from the upper GI tract? If not, the anemia may be from suppression of your bone marrow from your chronic infection. That will only improve as the infection improves.

The blackouts are another concern. Please rely on your walker or scooter more since you have the anemia. You are at increased risk for blacking out and falling.

Please keep me updated on the labs, etc. I would also hold off on Dr. K until we know there’s no infection.

THIRD, AND FINAL OF THIS SERIES, FROM ME TO YOU-KNOW-WHOM:


dear dr. MDVIP Go-To-Guy,


i've put in a call to i.d., trying to get tuesday's lab results.  have both called and emailed.  i am feeling pretty awful, temp got to 101, dropped to 99, now back to 101, but more significantly, to me, i'm having chills, feel all woe-is-me-weepy, and exhausted.  there's been no feeling like passing out, just a feeling of distance/unreality.  and a headache.


if things get worse, i will contact them again, first, using the "emergency" line (my understanding is that dr. b is out of town), and do what they say.  if need be, i'll have fred drop me off at the Lone Alp ER.  unfortunately, he refuses to stay with me in the hospital any longer... he just hates that environment, and, it seems, me,  in that situation.  


i'm just letting you know in case there is a communication failure... for instance, when i had to go to the ER a few weeks ago, the EMTs reported that they picked me up in a "GP's office" [instead of the infectious disease infusion center] and that the problem was "a dislocated shoulder." i thought fred was following us over there but, no, he just got in the car and went home.  i was shivering so much i couldn't correct anyone, but wish i had a photo of the face of the x-ray tech who immediately filmed my shoulder.  she told me, "uh, we need to do this again because i seem to have cut off part of your... [long pause] ... clavicle."  sure, i could have told her there was no shoulder on that side, but why muck up a perfectly good learning opportunity?


it's often like that kid's game, "telephone," where you pass around a piece of information to see how changed it is at the end.


i hope to not be calling, but thought i'd give you a head's up.  thank you, thank you, for your good care and forbearance.  


much of that forbearance is put to use on these emails, i am sure.  sorry but when i feel this sick, i talk and talk.  i am afraid, and that's what i do!


so i at least hope that my verbose communication sometimes makes you smile, even if it kills an extra few minutes of your "free" time.


hey, j (j is his Super Nurse)!  come do private duty with me this weekend?????  movies, popcorn, wheelchair races?


oh, and the gut is fine, no obvious bleeding.


bowing out of another graceful communication,
profderien

So there you have it, Sweet Readership.

And as is always the case, I feel better already.

Cheerios and Fruitloops, Clotted Cream and Jam for all.

STOCKHOLM 1912

Compassion and Goodness

One of the things I do quite a bit these days is cry.  If I did it prettier and without a runny nose, I'd say that I "weep," but who am I kidding?  I have been known to blow my nose on my tee shirt and wipe my eyes with the back of my hand, flicking the moisture willy-nilly, or letting Dobby clean me up.  He does a great job, even if it does mean that I have to go disinfect myself afterward. He gives a bit of a cheshire smile when I attempt a purr. If someone, even a cat, shows you that much love, you don't interrupt so as to make a critique.

Despite the growing proclivity for leaking saline, which, given my fevers, I can ill afford, emotional stuff builds and builds until bursting seems the only option.

 From Compassion and Goodness

That's when having a best friend sitting close, gently, with savvy, holding my CRPS hands just right -- not stroking, but holding firmly -- would be nice to have.  That I don't is entirely my fault, but doesn't keep me from that morsel of self-pity. I could change this friendship dearth in a mere moment, but I don't, and that's stupid.

Add it to the Stupid List.

Back when I tried to help out some in the fight against people being homeless or so flirting with homelessness that their days were built of bricks dense with stress, back when I spent the day encouraging and fussing, modeling and experimenting with young minds, chalk in hand, back when rushing home to make simple pasta, marinara, music on, back when... I never cried, wept, or had many ocular leaks at all.  The lesson?  Stay busy, do what you love, give back, and be open to the day's unexpected gifts.  Lacking a means of transportation, the men at the shelter welcomed me onto their duct-taped, prayed-over bus that left at 5:30 AM sharp, and got me to the closest metro station for the second stage of my journey to school.  They were sleepy sweet, bitter sharp, funny, depressed, hopeful, a boon one to the other, and to me, the hitchhiker.  It got more complicated as I lost mobility and my scooter joined the dangerous pile of wheelchairs and walkers that we very illegally stashed in the doorwell.  But no tears, not even from the men who surely had reasons to dissolve.

I need to recreate that experience -- without the "elderly, sick, and/or disabled" men without physical or emotional shelter to call their own, without the ensuing two-hour trip to school, without the talented teens on hormone overdrive (and their equally uneven instructors), without the pots of roiling, boiling water and rotini, the rush back to the shelter for evenings of laundry and serious competitions of hearts, spades.  In between hands, grade a paper here, grade a paper there.

Please don't stop, don't allow yourself to be stopped.  If you pause, even, covet the busy-ness with love, and return to it refreshed.

Should you, though, find things rough going, and going rough for too long... Should you not feel rested after resting... Should you lose the joy in passing as yourself through hard things, remembering your swollen feet on the crowded platform, and not the too-cool-for-school fourteen year old goth giggling with a cardiganed lady who, given their shared nose stylings, must be his grandmother... Should that happen, don't stop, still don't stop, even if it means a decade or so of traveling to a hard cadence, of walking from the same points back to the same points.  

If you've read much of this odd blog, you will have found the occasional reference to a man called "my MDVIP Go-To-Guy." He's a doctor who stepped out of most of the madness that has overcome medical practice, deciding instead to have a smaller practice, dedicated to wellness and the spending of adequate time and attention to each patient.  I remember him saying that he wanted to enjoy practicing medicine again, that he was spending excessive time on paperwork and insurance companies and we all know to what he is referring.  I suspect he is a Republican, but I forgive him.

When I had to go without insurance because BCBS priced me out of coverage (They raised my premium four times in a year, to $1513/month, plus a hefty deductible;  They simultaneously began denying me coverage for procedures that needed repeating, like cultures to identify nefarious infective bugaroos.)  Left uninsured with an active bone/prosthesis infection, my MDVIP Go-To-Guy got me through that time by researching the cheapest drugs, by being so vigilant that I never once had to be hospitalized.  He was often praised with the highest praise we have here in Tête de Hergé, being named "a prince, a peach, a pear." 

But when the Affordable Care Act passed, with its life-saving provision of PCIP (The Pre-Existing Condition Insurance Plan), I had to have the infections addressed by a bevy of specialists, the bevy-est of micro-managers who saw me as an eyeball, a shoulder (sometimes left, sometimes right), sticky red blood, and ill-behaved connective tissues, some odd neurological disorder, and a twinge of an attitude.

Essentially leaving the attentive care of the prince, the peach, the pear for Infectious Disease Dood, Shoulder Guy, and a host of White Coats that often didn't even bother to introduce themselves before billing me $300 for scribbling in my chart after sticking their pointed heads inside my hospital room to swap howdies, I felt very much left on my own, and helpless.

What was the plan?

Who was in charge?

Why won't you answer my questions?

Because he accepted email communication, I began a process designed to keep my MDVIP Go-To-Guy up to date on the goings-on, because Lord knows, in this technical age, it's nigh unto impossible to fax, scan, email, or convey telephonically any results, plans, ideas related to my care.  We were dealing with an infection whose bacterial, viral, or fungal basis refused to grow in the laboratory, despite being abundantly evident in surgery.

But then, you know all that old story.

Lately, I have abused the email privilege.  Well, honestly, I don't think I have, but I know that most would say so. 

I don't know what I would have done these last few weeks were he not there at the other end of these garbled messages.  He is limited -- by good sense, and by, I am sure, legalities -- in how he can respond.  But that he does respond, and hasn't yet ordered me put in a special quiet quilted-walled room in some out of the way facility?  Well, it's life-saving.

But I do violence to him with my words -- you've seen me do the same here, you know what I am capable of, and how I excuse myself by calling it "honesty." 

This is the wound I inflicted yesterday:

Hi MDVIP Go-ToGuy,
I have to thank Nathalie at Dr. G's for suggesting that I try to get you to have more control over the specialists that are handling my care.  They're great, talented, and all have tunnel vision.
This morning I had another experience like the one last Tuesday, a rapid and distressing temperature spike, with dripping sweats and a heart rate ranging from the 50s to 120s -- within a half-hour of doing my first antibiotic infusion of the day.  You'll forgive me, but I had already had 2 Endocet for pain (=650 Tylenol), so I dug up my bottle of ibuprofen and took 800 mg, got in bed under a heavy blanket, and just got through it.
The second infusion -- about 2 hours later -- also brought on a reaction, but a smaller spike.  I hit 102, nothing near the 103.5 from last week, but it felt pretty awful.  This time I added ice packs.
THE PICC LINE IS INFECTED, it has to be.  Both of Dr. B's PAs, Susan and Jacqueline, came to that conclusion last week, but he overruled them, saying that even if it is, the cefepime should "cover" me according to whatever grew in the blood cultures.  It only occurred to me today to wonder if my aortic valve is at risk.  Wouldn't that be a hoot.  But there's no "hardware" in my heart, so blahblahblah!
Outside the semi-crises that occur with infusions and flushing the lines, the rest of the time, I am exhausted, in extreme pain, but forcing myself to be an admirable domestic.
The pain in what-was-formerly-my-shoulder is worse.  Now this could be because I am forcing its use, trying to grow some of that scar tissue that supposedly will one day function like muscle.   But who knows?  The hip pain is now in both, with the right remaining much worse.
The spasms are back, as well as blood sugars that defy logic. That's at 50 units of 70/30 twice a day and sliding scale before meals.
I'm going to put my four years of experience with prosthesis/bone infection to the test, go out on a limb and cry, "infection!"   And my specialists are all going to look at each other but no one is going to look me in the eye.  If this is going to kill me out right, or some complication of it, just tell me  It won't be a shock.
So long as I have an ID doctor who doesn't even check my weekly CBC results -- only blood culture results matter -- and a super shoulder specialist who only looks at... shoulders, etcetera -- I don't have a chance.  Yes, I believe there are some of those nasty bugs in my hips, so making the appts to see Dr. S's team is smart.  But I'm exhausted, depressed, and tired of telling this story to doctors who then look at ME as if I'm crazy.
I can tell you now that he'll order a "tap" of the hip under guided fluoroscope, they won't get anything to work with, and he'll say, "well, everything looks fine..."  I've had 10 taps, without results, that turned out to all be in infected areas.
Speaking of crazy -- I think my brain is infected, or that CRPS is having more of an impact up there than I expected.  For the first 15 minutes or so at the start of every episode of spasm, I am suicidal.  That's not an exaggeration, I am not trying to get attention.  It lasts almost exactly 15 minutes and it is a real struggle.  Then, I cry a bit, and it's gone.  Not the spasms, of course, they hang around for hours!  I use the mantra of "it's only 15 minutes," but one day, that 15 minutes is going to coincide with something else, and that will be that.
I've passed out twice this week, both times during a transfer from bleeping wheelchair to the bed -- if you have to have a brief black out, doing it on the bed is a good choice.  I am trying to drink more, because it's got to be dehydration...
Beyond a puerile "please just make it all stop" request, is there some way to draw up a plan, slow things down?  I always feel like I need ID help right when they have checked off their to-do list of 6 weeks of X and 4 weeks of Y -- because I go by symptoms, and the rousing sense of failure that hits when they say "we're done, call us if you need us!"  Same deal with Dr. D -- now that the shoulder is gone, why should he care that the pain is worse and eerily familiar to earlier pains from infection?  And, trust me, there's no one to call during my 15 minute dalliances with suicide -- or if I did call someone, it would be a CYA response.  Who do I tell that I am just crazy enough to think my brain is infected?
So... when you were signing up hale-and-hearty patients for the preventive medicine you were hoping to practice via MDVIP, you must have rolled your eyes to see that I wanted to tag along, eh?
Ah -- the worst fever symptom of all?  Over 101 degrees and I want all physical issues solved, as of yesterday.  I am also rude, weepy, and annoying, even to myself.  I hope to avoid a hit of spasms with these fever attributes -- I wouldn't be able to find a single reason to justify my existence, not in a mere 15 minutes.  My reason for living is Fred -- not love of Fred or even fondness of Fred -- but the need to be able to leave him a little more money than I have right now, and with organized finances, and a house in good repair.  Otherwise, he will be lost.
So what can my MDVIP Go-To-Guy pull out of his hat to help this mess?  No, thank you, I don't care to speak to a counselor or a psychiatrist -- that detracts from my primary objective of accumulating massive amounts of wealth to bequeath the guy snoozing in front of his computer, oblivious to all...

This time, I thought, I might well get a "cease and desist" courier-delivered letter on fine linen stationery, thanking me for having made his practice so much fun and encouraging me to go spread enjoyment elsewhere.  The main thing, you're just not supposed to use the S-word.  I use it and use it often, as part of my effort to use the most appropriate word for sign/signifier/signified/referent.  I got bit with the Saussure bug.

You Readers are pretty sharp.  You might well have already imagined MDVIP Go-To-Guy's response, which I just got, right in the middle of a weep.

Sorry for the late response. To be honest with you, I read this late last night but was so overwhelmed by the email, I wasn’t sure how to respond. 

Your issues are clearly not simple and this is way out of my expertise.
The only thing I can suggest is that I call and speak with Dr. B myself to get a clearer understanding of what his plan is. 

Unfortunately, I am leaving town in the morning for a much needed vacation...
I will try and call him [on my return].

I’m sorry that I cannot give you any better advice than this but I truly have no other ideas of what to do. 

In my 23 years of practice, this is clearly nothing I’ve ever dealt with and I must rely on the specialists for advice and guidance.

The office will be open with Dr. K manning the ship in my absence. J will be here.
If you’d prefer to see me for an appt when I return next week, I’m happy to see you.

Like I said, "a prince, a peach, a pear." 

Just being heard, feeling heard, relieves the pressure that threatened to make a protoplasmic mess all over my clean floors.

So I was able to fire off the last word... 

All right, MDVIP Go-To-Guy, I've hit upon a brilliant plan.
You need a vacation (of that I am sure!).  I need a vacation, too.
So I'll make some version of one... maybe do a virtual world tour, immerse myself in the Olympics, remember how to laugh again.  Renew some of the family relationships that oddly seem to start up again after someone dies (very perverse, that).
Maybe I should try doing a good deed now and then.
So... let the vacations begin, PICC lines, and brain dysfunctions be damned!
You are possibly the best doctor around -- but don't get a swelled head.  That's MY purview.
Thank you.

So once I publish this, you will have, and I will have, proof tangible, bolded and in color, that I am far from alone, far from uncared for, and that fighting that 15-minute fight -- for now -- is worth every bit of the effort.

in lieu of originality....

in lieu of a post dedicated to marlinspike hall and manor fans alone, please allow me to copy the high wit and zaniness that i sent out to my friends and family list last night and this morning.

i must highlight a scientific discovery, however:  dark chocolate seems to be the cure for most illness.  dark, dark chocolate -- low sugar.  sensuous.  you heard it here first.

okay, here are my cut and paste offerings:

#1.  To MDVIP  Go-To-Guy and his hopping nurse, Jalapeño:



HI -- 


I just called yesterday to say that I was going home from X Hospital.  Dr. D felt good about the surgery, did not see obvious infection, removed the spacer, etc. so I am shoulderless on the left.   Dr.B did not feel so optimistic -- seems more worried about the situation in the bone and less about the joint space, and ordered another bleeping PICC line and a month to 6 weeks of intravenous antibiotics.-- daptomycin.


He said I need either vancomycin or daptomycin -- vanco messes up my ears, and I get high liver enzymes on daptomycin, but those are my only choices [?].


I am exhausted and depressed and hurt.... BUT if we had not been able to stop the CRPS spasms beforehand?  This would have been a disaster -- so I THANK YOU FROM THE BOTTOM OF MY HEART for helping to get those stopped.


We have to make numerous trips back and forth to Dr. B's office and Fred is unhappy.  Five minutes before we left the Manor Monday to check in for surgery, he told me he was not going to stay with me after surgery, and "so what should I do with your stuff?" [like a *wheelchair*]  I made him leave once he dropped me off, because all I was getting was more ADHD/PTSD stuff and I couldn't take it anymore.  So I went into surgery sobbing like a nincompoop and he didn't show up until 4 on Tuesday, just in time to leave the hospital... I don't believe he remembers doing or saying any of that stuff on Monday.  It's amazing, infuriating, depressing, scary, and it makes me very lonely sometimes.  But love is miraculous, and on the way home he stopped of his own accord to get me some chocolate.  Sometimes buying your partner chocolate is the biggest "I love you" you are gonna get.


This time, though, even if he has to lose it for a little while, I am okay, I am not febrile and falling down!  It's time to take care of Fred for a bit.  And ManorFest is now just weeks away.  We are thinking of submitting the film of this surgery to the Sundance Festival Competition, Cannes, and have a preliminary showing here, shown on the outside wall of the Labyrinth -- which is now big enough to serve as an IMAX screen.


Okay, well, let me get busy trying to see what life without a shoulder is like!  So far, I haven't even had the guts to look at the wound but Dr. D seemed very pleased.


You all are wonderful.  There is no need for home nursing or any of that -- Fred, Bianca, or I (probably me) will do the PICC infusions -- they are just once a day.  If I can get the long extensions put on the PICC do-dads, then I can use my left hand for flushing the lines.  Fun, fun, fun!


Nathalie at G's switched me to 25 fentanyl patches.  Do you think she will believe me that we went through 3 of them in 3 days?  One fell off in the shower on Sunday, they pulled the next one off in pre-op, put a new one on that Hank pulled off, thinking it was tape,  We are a lot like the Marx Brothers.


Much love and appreciation for your prayers and good thoughts.  If I spike a temp or feel really rotten, I will call: you, D, B -- in that order!


Profderien, Gimp par excellence


PS My new least favorite experience?  Being given the paralytic medicine in the operating room before having access to any breathing tube... can you say "panic"?






#2 To Friends and Family, with a few foes thrown in for good measure:



howdy, group --


i am home, but now you can only cry on one shoulder.  you can only put your head on one shoulder... i can't think of any decent shoulder jokes!


there was a divergence of opinion -- the surgeon felt there was no "significant infection," and the infectious disease doctor was more concerned with the state of the bone, not the joint space.  in battles between infectious disease bigwigs and shoulder surgeon bigwigs, it's the "ID" guy who wins.


so they inserted another bleepety-bleep PICC line yesterday and started 6 weeks of daptomycin.  never mind that it gives me liver toxicity, ID Man says "we'll keep an eye on it and if it gets too bad, we'll switch to vancomycin."  vancomycin makes me have auditory hallucinations, and ringing in the ears which can be permanent.


if i did not like and trust ID Man so much, i'd have taken off at high speed in my trusty chair, clearing the way with a cane wielded with fierce precision.


okay, so it hurts like the dickens, i have not had the guts to look at the wound, and we have to be at ID Man's office in just a bit.  so this well-written, well-thought out missive must end.  don't cry...


fred is fine.  i about killed him, but he's fine.  i don't think he has any memory of the crap he pulled prior to surgery, which is just as well....


i love all of y'all, and have appreciated your support over the ten surgeries these past three years!


if you are not an obama supporter, and i suppose that is in the realm of possibility, please still give thanks to the man for giving me the opportunity to buy insurance when all the private companies refused to cover me any longer.  it is still a bankrupting situation, but i am covered and treated well.  i grieve for those who are not.  i am pretty sure that romney would not recognize me as either a corporation or a "person." 


love ya,
profderien, the one-shouldered gimplet

Alacrity of Crab and No Fear of Death

Set your sound system to mute.  I was thinking more of what Holly Near once looked like, on the steps of Sproul Plaza, than of the song, which I now realize that I hate.  It's a facile, good-for-nothing song.  And I'm just lazy enough not to want to spend five minutes reformatting this award-winning little vid so as to get rid of it.  

Plus, I have Cajun Blend Trail Mix seasoning stuck all over my fingertips, making them sticky, orange, and tangy.  I don't want to touch too much stuff, leaving cajun traces every which where.

Why don't I just wash my hands, spend the few minutes fixing the sound, and apologize to Holy Holly Near?  Well, who died and left you in charge?

There has been something potentially wonderful going on.  It's called clonazepam, and depending upon whom you ask, it is used to treat dystonia, anxiety, seizures, panic attacks, and insatiable lusting after good garlicky pickle juice.  I began noticing it being mentioned in articles about CRPS spasms/dystonia, mostly articles originating in the U.K.  Being at that "well, why the hell not?" stage of life, I emailed my good and faithful MDVIP physician, asking whether he thought it worth a try.  In lieu of a discussion, he called in a prescription to the Lone Alp Apothecary.

The first change of note was blubbery.  Babalushka bablubbery.  Sleeping as if it were le dernier cri and all the babalushka bablubbery surrounding it were refined messes worthy of literary awards.  I decided this was how I wished to die -- asleep, or contemplating sleep.  I kept all my other meds the same -- maxed out on Baclofen, even adding the odd tizanidine to the usual pain meds of methadone and endocet.  "Did I want to die?" you unsufferables are muttering, shaking your locks to-and-fro.

Why, yes, you unsufferables (and mutterers, too) -- I did hope to traipse off to death land.  I couldn't take it anymore.  The time awake was spent in rocking, tendon-splitting spasm, uncontrollable sobs that bored even the Feline Remnant.  The time asleep ordered itself around oneiric alphabetizing of what I could expect upon waking.  And upon waking?  Well, I was made to know that I was... "overwhelming." 

I put a lot of hope in an appointment chez Dr. PainManagementDood.  I know, I am stupid.  My previous appointment, to my recollection, had ended with the promise that the next one would entail a shift away from methadone, which, frankly, frightens me, and toward a better management of my baseline pain.  But -- AGAIN -- I was met with a Nurse Practitioner's big round eyeballs, and a "Uh, did we say we were going to do that?  Did you tell us your pain was out of control?  Can we take that up next month?"  I went home and vomited

So slipping away into babalushka bablubbery was a smiling, gently smiling thing, though lonely, and scary.

Then my spasms decreased in frequency.  Not in severity, ugliness, painfulness, no -- just stopped happening as much, as often.  I pushed the dosage of the clonazepam to the most recommended by good MDVIP go-to-guy, and cut back some on the baclofen.  

I started to be able to predict the babalushka bablubbery, so that a warm quilt could be at the ready, other important maintenance drugs could be taken on schedule, the room could be darkened, there was a semblance of... intent.  Occasionally, I risked thinking beyond the impending babalushka bablubbery, and plan to cook dinner for Fred, myself, and Bianca, because if I had to listen to that god-forsaken *ding* of the microwave one more time, I was going to revive Mengele's most promising experiments.  The secret lore of the Haddock clan includes the updated names and addresses of Auschwitz twins.  Sometimes, Reader, looking the good captain Archibald in the eye is a soul-sucking trauma.

It's been about a week now, I think.  I am not sure, at all.  I am not sure what day it is, not sure whether I believe the sources that yearn to ease my mind about it.  Is it 2:07 PM 5/18/2012 or is that just what you all want me to believe?  Hmm?  My pain level is very, very, very high -- I'd rank it around a nine, and it's distracting, it's evil.  I know I took my breakthrough pain medication and so cannot have more until roughly 7 PM.

The spasms are lasting only about 3-4 hours per day.  That is PER DAY.  TOTAL.  I am afraid to type it, afraid to publish it, afraid to believe it.

So God bless MDVIP Go-To-Guy, God bless him as he has never blessed a soul before.  You see, he believed me, he believed my desperation, he found merit, apparently, in my suggestion, and above all, Sweet Reader, he tried.  

He even heard me when I said I'd had it with Dr. PainManagementDood, and suggested another doctor, by name.  Unfortunately, that doctor has gone the route of ka-ching::ka-ching procedure land, and so only treats CRPS with sympathetic and regional blocks.  Oh, and SCS -- which would fly in the face of my recent decision to rip from my body all extraneous implants.  

Here is the kicker, though:  when he found that his referral was actually no referral at all, MDVIP Go-To-Guy offered to take over my pain management himself.  I probably should have said "Yes, and yay!" but a smarter self intervened to thank him but decline.  It's beyond unfair, to dump everything on him.  The current climate of looking over prescriber's shoulders and second-guessing their pain management decisions is not what I want to wish on him -- though there is little doubt my treatment would raise more than an odd and poorly tweezed eyebrow.

But here is a "Yay" for the man, anyway, because the combination of tizanidine, baclofen, endocet, methadone, and CLONAZEPAM seem to have quelled the spasticity enough that I must reconsider life.

Um, it also seems to have triggered something that I will call "automatic eating," which results in finding half empty yogurt containers in bed, and bowls of popcorn with kernels all hither, all yon.

There are increasing deficits, too, and these are the reasons for cutting back on dosages in the hope of finding a happy medium.  Legs not working too well, hands not grabbing with the alacrity of crabs. An absolute absence of the fear of death.

Someone asked for a visual update of hands and feet, so I pieced together the video below.  Again, I had fun with favorite things in juxtaposition.  

Which brings me back to Holly Near and her glorious red hair back in the mid-eighties, being all troubleshooting troubadour-ish on Sproul Plaza.  But really, what a shit of a song.

You know it and I know it -- were we really singing for our lives, it wouldn't be such a whine.  It'd be glorious.  It'd be red hair glinting in a setting sun.