Wednesday, September 5, 2012

the one where i finally show my face...

okay, friendly readers, i am wayyyyyy febrile and it's kind of evident.  i hate a sweaty head, in particular, and the shivers.  the burning eyes, not so bad, except that i have made it to then last 20 pages of a novel and now cannot decipher the ending.  maybe by bedtime, which, given that it's now 4 pm, might arrive any time!

here's my plan for this post.  a picture of my hero hannah, as she tests out a prosthesis and remains a young girl staring, unblinking, into big troubles, then flashing a beautifully defiant smile.

then, i am going to try to post a video update of my lovely hands and feet, and maybe a spot from my face, though we all know that'd break the camera, ha ha ha. it's a weird new development, kind of like the weird old bumps and bullae that plague my right leg.  it adds to my feelings of confidence and encourages my desire to appear in public.

as for an update on my relationship with the new specialist on The Team, and my cancellation of the big and important appointment i had with my dear mdvip go-to-guy, i'm gonna lift a "blog" post i put up over at, that cess pool of cess pools that attracts me like a cess pool fetishist. oh god.

sometime today, i need to clean our private quarters here in Marlinspike Hall, as Marmy Fluffy Butt has been  experimenting with projectile vomiting -- most impressive, i must say.  thank goodness that our stepdown living room space is populated with most of the mission style furniture put out by l.l. bean -- meaning that slip covers are removable and washable.  not by moi, of course, as this useless left arm is... useless, but by the dear, dear fred.

as for Marmy Fluffy Butt, herself, a large part of the issue, i feel, is that she is still avoiding me like the plague, and i am her main aesthetist.  i was her daily groomer, her weepy eye cleaner.  i kept Miss Thang free of hair balls and other such gross happenings.  however, ever since i administered her eye medicine, she runs from me.

nay, she flees.  it hurts my heart, as that daily time with her was precious and i miss it.

and now, we must worry that she has a gastric blockage, though she did, i believe, just go streaking and shrieking past my bedroom door, Buddy the Freakishly Large Kitten hot on her trail.  so maybe i am worrying needlessly.  but she is such a tiny thing, all hair, really, and she's so weird that i think we may be cosmic twins.

okay, so now that i've exposed the intricate details of this post's plan, i need to go take care of these plebian matters, the vacuuming of the futons, the spot cleaning. oh, and maybe i should begin the makings of a dinner for Fred, and a rapid damp mop of... everywhere.

i cannot tell you how badly i hurt, how much i have cried today.  how hopeless it all seems.  how much martin bashir irritates me.  how i hope michelle obama speaks tonight as we all know she can, and that it lifts my spirits.

msnbc (oh god, don't get me started...) has shown several times a short clip of barbara jordan today, and it has been a comfort, for some reason.  that voice, that dignity, that intelligence.  that humor, and all the unknown suffering turned into triumph simply by who and how she was...

there is hope, there is beauty, there are stolid, solid lovely people.  and i am off to vacuum, dust, and mop -- while the percocet is working.  but i promise to be back to fulfill my compositional promises.

in fact, before i go, here is hannah:

from Hannah's CaringBridge site
this girl rocks.  at the moment, she is getting a break from chemotherapy due to low numbers, not something that anyone wants, though i bet there is a secret bit of relief, a brief sense of vacation.  she's been steadily going through chemo, sometimes clearing her numbers like a champ, sometimes falling prey to fevers and nausea.  but what doesn't change is her steadfast attitude, her straightforward walk through this unexpected trouble.  is she still my hero?  you bet.

okay, i am up and heading for the mission living quarters. yay?
it's no longer today, it's tomorrow.
i slept so hard, so long, and am thinking about doing it again.  i missed michello obama's speech. drat.
but i remember the dear ms. keenan, of naral.  hooray!  i think she did a great job.
i have no clear recollection of even writing anything above the dotted line.  still, following my own intructions, i just snapped some photos -- because video is impossible due to my hands shaking.

first, five photos of my right foot, the site of onset for "my" CRPS.  i think i will eventually lose that leg.  this is the leg that the new superduper famous ortho i saw last week would not even look at. not a brave soul, him. he?

then comes the most painful, though not the most painful looking -- my left foot/leg.  only two shots because the pain just does not show.  the onset of CRPS in the left leg came about 2 years after the right foot/leg.  i simply woke one morning, and *poof* -- there it was, a purple, cold, burning left foot.  and now, this foot/leg is behind most of my extremely loud, hopeless verbalizations and castigations of God.

next... my hands are kind of freaky right now, and embarrassing... so i just showed you the extreme weirdness of the nails.  it began on my left hand a couple of years ago -- the thumb and middle finger only.  then, one morning -- *poof* -- i noticed that the thumb and middle finger of my *right* hand had begun to ape the left side.  the symmetry of CRPS is just... creepy.

i had to show you poor marmy, hiding away.  she's upset that we washed and vacuumed and generally rendered antiseptic her favorite furniture, plus she feels like crap and won't accept any nuggles or loving.  i did see her scarf down a few treats though, so she's okay...

also, marmy is there as a buffer for the first time i've ever shown even a bit of my face.  maybe now my family, constantly demanding photos of "me" can understand.  i have CRPS crapola even on my face.  please respect how absolutely ugly and socially WRONG that makes me feel.

besides, you know the rule:  no wearing of CRPS faces out-of-doors or in photography/videography after labor day.

without further ado:

oops, i almost forgot the cess pool of cess pools, the "community blog" area of drphil dot com.  why i put it there is anyone's guess.  oh, i know:  i think dr. phil can cure me.  i think he is one hunk of a brilliant psychologist.  yeah, that was it.  so here it is.  stylistic differences and lack of cussing that may be of note are due to an ongoing war with moderators there, who do not like publishing ANYTHING i write.  hmmm, maybe that is why i am over there, pelleting them with writing!

summing up  [stolen from, mwa ha ha ha!]
i have to redefine my relationship with my "mdvip go-to-guy," my pseudo-concierge internist who has been keeping me alive for about 13 years now.  i cancelled a huge appointment i had set up with him for tuesday after my experience with the new ortho specialist i saw last week.

basically, the hip dude (as we shall call the new specialist) said he would be "too scared" and even "terrified" to operate -- and he's purportedly one of the top hip dudes in the country.  he looked mostly at the floor while he talked to me.  he had already spoken -- twice -- to my infectious disease dood guy, and, to shoulderman, as well.  he did not even want to proceed with a simple ultrasound, and really, really wanted to avoid discussing doing an aspiration under fluoroscopy.

i drove him to his bottom line and that turned out to be... no one thinks even a wash out of the right hip is worth doing.  they don't think any more effort should be expended on trying to defeat this infection.

i pointed out, with what i consider amazing calm, that this leaves me with daily fevers, chills, sweats, whole days in bed, whole weeks in bed, and diminished.... everything.  i did not mention pain, because then my sangfroid would have boiled over.  i did not mention pain because, hey!  that wasn't his specialty.

i tried to poke at him enough to see if the CRPS in that leg, in particular, was part of his reluctance to go after the infection.  just as he wouldn't look at me, he wouldn't look at that leg.

so... i am to keep a follow-up appointment with infectious disease dood, even though that appointment does not exist.  i am to wait another month, for a reason i cannot remember -- but i think he wants more time between ending abx and testing.

but then, what to do with the message:  if we grow a pathogen from the aspiration, i still won't operate?

so i came home, crying in the car, because, damn it, it hurt -- and then looked at the calendar and  saw my upcoming big assessment appointment with mdvip go-to-guy.... and emailed him to cancel.  he's been very brave, very helpful... but if the specialists won't do any more, what can he?

my last visit with nathalie, i begged for an injection of toradol.  she said they didn't have any.... "sorry." so when we were in the pharmacy, filling all the damn opiate prescriptions, i pulled the dear pharmacist aside and asked him if toradol was available in non-injection form.  "yeah, and i don't know why, but no one prescribes it anymore except as inpatient, by i.v...." so i ran (okay, rode) back up to the office, and left a note marked URGENT for nathalie... and lo!  the angel of the lord guided her hand and mind, and she called down a 5 day prescription.  it's a pretty dangerous drug, and that's as long as i can have it.  so this is my first whole 24 hours off and i can feel it.  will she let me have it one week out of the month, do you thnk?  one week when the bone pain can be brought down to non-screaming levels?

go-to-guy doesn't know this happened, nor shoulderman.  i've had serious bleeds in the past and all that jazz, my hemoglobin is dropping about a point a week (until i stopped going in to have it drawn) -- "for some reason."

i feel like i need to tell fred that i've reached the end... the trouble is, he thinks i've been there so many times before, he won't pay attention, or he'll think it is the pain talking.  i had hoped to leave him more money and a more organized house (one that could practically run itself!) -- but i have done the best i can.

so i am blowing off all the specialty dudes, and even my dear mdvip go-to-guy, though i know he is there for me, and always will be.  god bless the man.  this is how he answered my email:  "Sorry for what you're having to go through. I wish there's more I could do to help you."

and that about sums it up, eh?

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