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

A Letter to My Doctor

Names have been changed, not to protect the innocent or to shield the guilty, but to hide the identity and location of some of the most talented medical professionals to grace the planet. I don't want to lose access to them due to a sudden spike in earthly demand.

I just emailed my MDVIP Go-To-Guy. This was the subject line: "I made a decision..."

What an ominous subject line!


In the last few weeks, despite a STELLAR lab report [!], it's become clear that whatever infectious/inflammatory process is going on in my left shoulder/arm has not been stopped even with the very best efforts of a lot of good people, not to mention considerable pain, suffering, and pity parties here at home. Looking back at all the surgeries involved, it's equally clear that I've begun pushing my luck, since the post-op periods have become harder and harder; It also seems that CRPS has decided to take a dim view of these efforts as well, as it has spread up this left arm like wildfire in the past 8 weeks.


So when I saw Dr. ShoulderMan yesterday, I beat him to the punch and told him that the best option looks to be a flail arm. He tried to hide it, but he looked so relieved. As he said, "There are worse things."


I don't know where you stand on all this, but I hope you can follow my reasoning, such as it is. I don't think the odds of this problem killing me change one bit whether we proceed with another prosthesis (and then, in all likelihood, resume the chase for wily pathogens) or remove all hardware (and still, perhaps, cannot stop those wily pathogens). All things being equal, I'd rather not die in Lone Alp Hospital, with good-intentioned people poking my legs and telling me my whole problem is undiagnosed cellulitis.


So... I am not thrilled at the idea of a useless left arm and have many fears for the well-being of the right one. Fred is upset with me, but will get over it, I hope. Dr. ShoulderMan says that after about 3 months, the scar tissue that forms helps to provide some stability, and may enable more movement.


In other news -- I'm plagued, again, with spasms, almost always for an hour or two in the late afternoon, then beginning again between 8 and 10 pm. I DO NOT KNOW WHAT TO DO. This one thing, more than any other, I cannot deal with...


Fever -- usual pattern, and staying mostly in the 100s -- for the last 8 days. Increasing pain in the shoulder, and returning pain in other bones as well, all of which is typical when fevers hit. And though it never seems to mean anything specific, I am exhausted! I am going to try and push myself some this weekend, as I need to get some stuff done around here. [ManorFest will not plan itself, y'know!]

That's about it. I think it's high time I stopped wasting medical resources -- looking over the bills from January and February, I am mostly shocked at the expense. There are more precious resources -- time, patience, and good will come to mind -- that have been wasted, too.


I am likely to get depressed thinking about the flail arm thing... My inspiration to counter that is going to be a young lady I've met online, named Hannah. Without complaint, she underwent a rotationplasty about two weeks ago. If she can do that and keep on trucking, I can do this little thing!


Take care -- and, as always, any ideas to defeat spasms are most welcome!


Retired Educator,
Prof-de-Rien

sunday night check-in

i apologize for not "checking in" before now -- and hope to post something worth a read tomorrow or tuesday.  my legs are giving me fits, and the pain/fevers/chills from the infected shoulder make me a very uninteresting person, indeed.

saw the surgeon thursday, and remembered why he and his staff will always be heros to me.  what they are attempting to do for me is technically and medically difficult, something my go-to-guy doctor and i both tend to forget.  so it mattered to take a few minutes thursday to recognize that fact.

the down side of such emoting was the ensuing hug fest -- which rapidly degenerated into friendly shoulder pats that nearly made me scream.

there was one little bit of unexpected news.

dr. shoulderman was trying to walk me through the process and i was only half-listening, as this is not exactly new territory.  he'd gone over the ins-and-outs of the first surgery, talked about the need for a new infectious disease specialist, the PICC line, and 6 weeks or so or intravenous antibiotics.  (he briefly cradled his head in what might have been exasperation at the news that i was still taking oral doxicycline when surgery was 10 days away.  so shoot me... no one told me to stop and it just did not occur to me that it would screw up the culture sampling.  i stopped taking it thursday and pray that was soon enough for it to exit my tissues.)

he paused, and i entertained notions of actually going home and curling up under a few inches of soft flannel, as i just could not get warm.  i have even resorted to covering my feet, something that causes severe burning pain, as even my feet feel cold these days -- and this, after a decade of sleeping with them uncovered.  i also thought about trying to line up the roto-rooter treatment for my port, which, at the moment, will allow stuff to be administered but will not, in turn, surrender any blood for testing.  and, to be honest, there were some thoughts of stopping somewhere for lunch.  i was thinking taco bell when dr. shoulderman's voice took on a new tone...

"after 3-6 months, if all goes well, we will want to go in and remove the spacer, of course.  if it appears successful and we find no obvious evidence of infection, there are then two choices."

i think i probably smiled.  i didn't know i had choices!  this was great news!  i thought there was just the one option, the option we had bandied about for over a year -- the old reverse total shoulder replacement.  a woman with choice, a woman with options, now that's a happening woman.  i put taco bell and roto-rooting plans away, and tried to pay attention.

"we can put in a new prosthesis..." he said this in the most desultory way, as if it were something too awful to contemplate.  odd, i thought, since that is, of course, the best outcome -- a clean shoulder, a new bit of bionic wonder.

"i thought of you last week as we finished surgery on a gentleman in much the same situation. i put in a new prosthesis, the frozen sections looked good, it seems like he had beat the infection.  then eight days later, i get a call saying that something has grown in his cultures -- p. acnes.(this is the major suspect in my case, as well) -- and now he is back on the merry-go-round."

why, dr. shoulderman, that sounds suspiciously like a cautionary tale!

more sober talking, more somber scenarios in which it looks like i have beat the pathogens all to pieces when, behold!  the suckers were just lurking in the hope of reasserting themselves on some new implant.  there were dire descriptions of the state of my bones (no news there), and at the opportune moment, shoulderman shifted gears...

"and so it may very well be that at the time of the second surgery, i will have to assess the situation and consider leaving you with a flail shoulder."

the smile stayed on my face because i had not the least notion of what a flail shoulder was.  i knew the term flail chest from some EMT courses way back when -- and knew it to be a horrible trauma that basically unhinged the rib cage in folks who slam into the steering wheel in a car wreck.  inane smile still plastered on my face, i interrupted to make my inquiry into our brave new lexicon.

turns out that flail shoulder is the polite surgical term for no-freaking-shoulder-at-all.


in truth, this result had been mentioned before, but only in passing, and only, i thought, as a conversational oddity, a bit of ripley's believe it or not.  i remember, most specifically, my go-to-guy doctor whispering, several years back, "this is not going to end well."

dr. shoulderman, kind and handsome, talked on.  some people were able to train themselves to use scar tissue as a kind of new muscle, thereby allowing for some arm movement. i was particularly thrilled to hear that "some people can learn to bring their hand to the mouth."

unfortunately, even the most scintillating of conversations have to end (this one, as that one!).  but i've carried on the talk inside my head, a few minutes at a time, more if the fever spikes a good bit and my frustrations pop out.  i keep imagining what ifs that don't help one bit but are nonetheless all too probable.  how will i do x now, how will i do y?

within two days, fred was already able to think productive, forward-inclining thoughts.  yesterday, he even inquired about the possibility of an external bit of hardware with which i might regain control of my left arm, once it's been rendered flail.  i was dismissive, as it seems like dr. shoulderman would have brought that up right away in his extemporaneous powerpoint presentation.  fred, as usual, is a great point man, and a quick googling of "flail arm" turns up many examples of braces, hooks, and goth-inspired hardware that can be strapped on, and, if nothing else, used to make me look fierce, tough, and borderline biker.

Stanmore orthosis with hook:
Add a clutch and silvertone choker studded with Swarovski crystals for an easy day-to-evening look.

i don't know whether it is the stress of it all, suddenly, or what, but my left leg is now the fugly spitting image of the right one, and both are spasming to the beat of a whacked-out drummer.  i refuse to repeat the die hard description that one crps-er after another has ripped off and reiterated: "imagine being doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and knowing it was never going to be put out..." it's... depressing.

dr. shoulderman is wonderfully cognizant of my crps, and though we rarely discuss it, he is well-informed, as every orthopedic surgeon should be.  he has been distressed by the obvious crps spread, and the condition of my arms, as surgery anywhere is never wise with crps on board, and repeated surgeries in an area of lots of rsd activity is what polite society calls a "no-no."  so he decided to order repeat regional blocks in an effort to prevent further spread.  it was comforting, reassuring -- he cited a recent study, and did so in depth, an impressive feat for a man whose brain must be chock full o'important stuff.

tomorrow will be a long and uncomfortable day.  it's off to the hospital we go, for testing, testing, testing, and -- i predict -- some arguing with the billing office.  they say i owe over $3000 from a few years back -- they didn't file with my insurance company until 18 months passed from the date-of-service, and by then, i had switched to a new insurance, and -- of course -- the former company refused to pay.  if they make this admission contingent on paying that bill?  i will be in a tough spot.

ah, and tomorrow they'll culture skin and nares for mrsa... i have cultured positive several times before, therefore spending my time in isolation, with a very frustrated fred having to wear those awful yellow paper gowns, and be gloved up.

maybe i can have them give me the roto-rooter port clean-up tomorrow.  if we have to spend the day, may as well check off as many chores as possible.

so that's what has me away from the blog... although my heart is always at the manor, safe in marlinspike hall.