"Guess you better slow that Mustang down..."

My fever reached such a pitch that I found myself babbling to Dobby -- as, once again, Dobby was the only living entity williing (even eager, sweet thing) to be with me as I crossed the 102 degree mark.

He likes to hear the story of his birth as I brush his belly.  Don't even try to leave out a part, or his tail starts twitching and he glares.  Should you try to skip over the part where Marmy went to sleep with Dobby only maybe an eighth born, Dobby might gently scratch you or gnaw on your nearest part, in my case, a juicy  thumb.  If you attempt to gloss over his inability to find teat, much less mother's milk, and his early propensity for climbing Marmy in lieu of using her for sustenance, not even a dose of nip will save you.

It was Tuesday, today, infectious disease doods and doodettes day, and I dislike them.  The day, not the doods.  The Tuesdays.

I saw the head honcho ID dood, and that apparently made me forget every question or thing I wished to discuss.  For his part, he had prepared by reviewing all the blood cultures but not the regular lab work.  It wasn't until I got shuffled back to the Infusion Center, where the nurse was giving an inspired rendition of her favorite Zumba workout routine, that I ogled and "oh no-ed" over last week's labs.  She's entertained her captive audience of infected persons, tied to tubing and cuffs, beeping things, before, and usually I don't mind, but today... my head hurt, and my PICC line would not give up any blood, so I was having to sit and wait for this magic roto-rooter stuff to clear the clog. Meaning more shaking, jostling booty Zumba dancing for me.

I first met her last fall, and we went through the whole CRPS explanation and the shoulder situation, and still, today, she likes to punctuate her Zumba Joy by gifting me with little slaps on my left shoulder.  When I ask her to please not touch me, she gives a Zumba Joy Impish Grin and cries, "Why, I guess it's just the nurse in me!" (The desire to touch?)

I should probably call it the body-part-formerly-known-as-shoulder.





Whatever, she is a good nurse but I think something she did today may have triggered this spike.  I think we need to pull this damn PICC line out because it may be the source of the new infection.  After she gave me the clot-busting medicine and so was able to draw labs, I started getting chills, and by the time we got home, I was downright lousy.

Is it crazy to think the PICC line might be infected, even though they've added cefepime?  Two Tuesdays ago, when I got tossed back into Hospital Hilton, I spiked within an hour after doing an infusion.

Okay, I don't have a medical degree, and I know that what looks like cause and effect to a non-sect member makes real medicos chuckle in the dark of night, but come on!

I broke the rules [SURPRISE!] when Tylenol did its usual nothing and dug out my beloved ibuprofen.  I took 600 mg and if I could cross my fingers, oh, sistren and brethren, they'd be so freaking crossed!

I had promised Fred a special tilapia hash stuffed poblano pepper dinner but as he curled up into a blessed nap and I fainted getting out of the wheelchair into bed -- it's San Miguel beer and greek yogurt for everyone!

Feel free to join us.  Dobby's all a-flutter, as he finds poblano peppers pretty tame as far as peppers go, but the dear boy is a yogurt maniac.

When things occasionally really sucked in my life, my Dad used to make me repeat after him that "the sun is still going to come up tomorrow."  How is that comfort, when the evidence screams that tomorrow will be very much like today?

Zumba Nurse was trying, for some reason, to play me her ringtone as I was caterwall-wheeling my way out of the infusion center.  "Mustang Sally." 

Propionibacterium acnes

After 10 surgeries in 3 years, and probably hundreds of attempts to grow cultures...


an intra-operative deep tissue culture sample finally grew something!


As was often opined, the bastard culprit turned out to be an ordinary ugly old bug that we all have on our skin.  Propionibacterium acnes, however, just adores creating little thriving bio-communities on orthopedic hardware.


It's a bear to get rid of (as the last three years have surely shown) and I am down, essentially, to one antibiotic.  


Somehow, though, just having a name and imagining an ugly little butt-smushed smarmy face to it makes the battle seem more... winnable.  


There's some suspicion (mostly mine) that the ugly little butt-smushed smarmy faced bastardized community piled into a stolen VW bus and made tracks to my right hip.


One war at a time... One war at a time.


So the hope now is that my liver enzymes and muscles will tolerate the antibiotic for about 5 more weeks, followed by signs of victory, like a low white count, and normal ESRs and CRPs, no fevers, and all that stuff.


Then it's on to the hip!


did i make the right decision, to remove the shoulder?  tell me i made the right decision...  but i ain't removin' no damn hips...

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