There are so many housekeeping chores that need doing to get this blog back in shape.
I promised to follow three things in particular -- news and developments about missing child
Lindsey Baum; news and developments about
Dr. Scott Reuben; and updated information on
CRPS Clinical Trials.
Now, of course, I would add the four cancer kids that I follow, as well as the continuing truth that
Dr. Jose Ochoa is a Turd.
And then, well, there is my fascinated hatred for creatures like Dr. Phil and Oprah, and my desire to wrench others away from their mesmerizing bullshit. These are people of quality who just refuse to trust themselves, who have a tendency to love being on the receiving end of domination. (What? It's only the truth. Domination, even cruelty, equals attention, and they have been denied attention their whole lives. All they want is to be seen and heard -- no matter that they are being used, pimped, fucked.)
Of course, dealing with osteomyelitis and CRPS (the biggies) has completely taken over
elle est belle la seine la seine elle est belle, whether I allow a safari vacation into Amerikan politics, French politics, socialist circles, or even the wild and woolly adventures we have in the various kitchens of Marlinspike Hall. My pus-dripping bones and my wildly contorting legs and hands trump the hell out of the Militant Lesbian Existentialist Feminists, even the three of them who'd switch teams in a New York minute if it meant they could hunker down with my oblivious Fred. I did not fall off of the produce truck recently and although I was born at night, they had to use pitocin.
I've put life in The Manor and the many fascinating details of maintaining such a landmark on the blog's back burner, too, but, O! There are reasons for that and fear not, as soon as we are covered by the expected extensions of President Obama's Dream Act to us outlanders, Tante Louise will call off the surveillance.. Okay, so we're not young, but we are illegal, and we are immigrants.
We are squatters!
La Bonne et Belle Bianca Castafiore is so head-over-heels in lust with Sven, and they both are steadfastly and stealthily kept in view by Sven's lad Cabana Boy -- and to tell the truth, this has killed some of my desire to write. They keep the air redolent with stinky tension.
I almost and by complete ACCIDENT killed myself yesterday -- by gentle respiratory depression. Fentanyl patches, according to the manufacturer, are to be changed every 72 hours. My pain guru wants me to change them every 48 hours. I, of course, allow the earlier applied one to stay on an extra day, thereby milking out, or so I hope, every bit of pink-unicorn-fart pain relief.
The things do not stick well to my skin, mostly because I constantly cycle between being hot and dry, having sweats and chills. Also, I bathe. I bathe a lot.
Okay, this bothers me, so just let me get it out of my system, as if it were a bit of toxic fentanyl floating around in my psychic innards. I love a bath. I haven't been able to take a bath since... 2000. I shower. I use a shower chair and one of those wunnerful, wunnerful wand shower heads. I leave the bathroom sobbing and usually have to take a rescue dose of endocet and climb in bed, praying and crying, snot all over the place, sweating, destroying that fresh, clean feeling a shower is supposed to impart. Now, due to weakness and spasms, I shower twice a week. I bathe at the bathroom sink twice a day, usually more often. I use various antiseptic products, especially the ones that are commonly used as preop washes, trying to destroy any goddamn p. acnes bacteria hanging around. I've been told this is a ridiculous thing to do, as well as impossible and perhaps undesirable... but I do it anyway. I stomp on those toxic bastard bacteria.
Whew. Okay. Yeah, so bless my Stepmother who inculcated in me an obsession for cleanliness. Captain Haddock sure gets his money's worth out of my hyperfocus -- there are no cleaner medieval tapestries than the ones hanging on his manor's walls. I was born a maid.
Okay, let's reword that: I was born with maid tendencies. When I took career assessment testing in junior high school, the answer was always, "be a maid."
There are twisted ways that could have gone. I clean up. I believe I'd also have been a great assassin. I used to maintain a list of People Who Need Killing -- but someone, somewhere, must have snagged a copy, because they all just sort of started dying without me doing a doggone thing. And now, the world has changed so much, so quickly, that I am scared of making a mistake -- so no one has been added to the People Who Need Killing List since Pinochet died. Six years of no entries. A rusty assassin is a useless assassin. Just ask Clint Eastwood, or the chair.
I spent the night screaming. Pain. Muscle Deformations. I kept dreaming that my Father, recently deceased, who had been dreamily safely ensconced in a federal prison, had been released and no one knew where he was. I dreamt he was comin' after me. Then I would wake to find my right leg jammed into the wheelchair, and my body turned on my left non-existent shoulder. And so on and so forth. I finally got up at 3 am, mad. Mad at whom, I've no idea, but Fred was up, so I treated him to some of the door-slamming he so loves. He didn't notice a thing, the benevolent abstraction!
So I decided to calm myself and quiet down the door banging by taking a shower.
At which time I discovered FOUR fentanyl patches, all firmly adhering to my skin. All should have been neatly labelled with the day applied (I put a bandaid over them to help keep them on when the sweats and chills kick in, and write the application date onto the bandaid).
To the best of my muddled recollection, twice I thought the thing had fallen off, and so twice had replaced the supposedly missing pain patch with a new one. And in each case, it was the bandaid that was gone, not the patch. Yes, I had opened a new box of Made in the USA bandaids, a pharmacy brand that shall be henceforth banished from this usage, at least.
Yes, my eyes are that bad, also the patches are pretty much translucent. I had been fretting about the cats, fearing that they'd find the fallen fentanyl "pain systems," lick them, play with them, and promptly die. Sven, Bianca, and Cabana Boy? They are more drinkers than druggies. And Fred laughs at the idea that exposure to fentanyl could harm him. I also had a good fret or two over the koi, thinking that maybe the patches went flying out some window and down into the moat.
We've banned the carnies and Cirque du Soleil habitués from entering The Manor, so I couldn't see how the true fierce addicts around me could have gotten hold of them -- and lately, they've all been confined to The Barn. Long story.
Yeah, so I almost died, sorta. I mean, I guess I could have. I was certainly drowsy enough and snoring like a giraffe troubled by amplified adenoids -- before all the pain (despite four fentanyl patches) and contractions pushed me from the bed, to work, to a good sweat, to another shower.
The irony is that this week I am meeting with a lawyer to rework my living will, my standard will, my various powers of attorney, and seeking guidance on getting a DNR.
I can tell you that there is NO news about Lindsey Baum, that Scott Reuben chafes under the restrictions placed upon him (I'm sure it is a mystery to him why trust is so hard to come by), and if you want the latest CRPS clinical trials, it's easy -- just go
HERE. The only extra gifts I ever offered in my listings of the clinical trials were my not-so-expert opinions, and adding some suggested reading to better understand what was at stake. But you, Dear Reader, don't require that. It was more along the lines of me, as a high school sophomore, "showing my work" on a geometry test. Yes, a "proof" of some kind.
Of the four young ones fighting cancer that I follow, Hannah is doing great, as is Kate (she shows no evidence of *any* tumor!), Braydon struggles, and the last young man will not live much longer. I am also following a teenager, mostly because I saw her picture after she had died her hair a beautiful punk pink -- before losing it all, of course, by a new course of chemotherapy. She has relapsed but is kicking cancer's big fat butt by a punked out perky attitude, and by loving parents who never leave her side, and who pray all the live long day. There are others -- you cannot help yourself, because the kids you follow all have blogging parents who do not cease to ask for your consideration for the kid in the room next door, or for so-and-so who has developed a nagging pain but whose MRI is not scheduled until October... I can tell you that pediatric oncologists must have a healthy respect for parents and their "gut feelings," their intuition, their "something is not right with my child." In short, my cancer kids are doing better, as a group, than they usually are, and they are inspiring and uplifting, each and every one.
I posted a piece called "
Billy" on September 5. He's not a cancer kid, he's a cancer grown-up! He has stage 4 lung cancer, and I will save my speeches on smoking, because, as an ex-smoker, I do understand. No, not true, he continues to smoke, and THAT, I cannot fathom.
Anyway, Dear Readers, Billy and Joyce are an odd couple, getting closer now that it is too late to say their marriage was a good one. But they do understand one another and they do love each other. She has carried on her back the welfare of two grown daughters, both of whom refused to leave home, one of whom has three boys, all with what we like to call "issue." Joyce's siblings and other close relatives all struggle with addiction. She is raising one of her sister's children, which is the working miracle in that child's life, because Joyce never gave in to addiction, never gave in to the lifestyle and values around her. So Shawna is a star student with a bright future. Joyce is disabled now, living entirely on entitlement programs, as is everyone in the family, really.
Billy is schizophrenic. He is a U.S. military veteran.
They have *nothing* but the items in their apartment, in material terms. No vehicle. The vast wealth of their benefits tend to run out before the month does.
And now he has been dumped there, in a hospital bed, with oxygen, a walker, and all that good stuff. Hospice is supposedly on the case, but mostly they have dumped him, too -- telling Joyce to do this, this, and this... and Joyce is sick and tired, and also still overseeing her girls and her three grandsons. She has to walk everywhere, and most of her pain is centered in her legs and back, so those walks, that she used to love, are now akin to traipsing from Bataan to Corregidor.
Give them some money. Christina, one of Joyce's daughters, has set up a fundraiser through the very legitimate
FundRazr. Ask questions, if you are dubious. Give a dollar, two, or three. That's more than they have, even after digging under the cushions on the sofa.
Listen -- they save stray cats. They keep those sons and grandsons in scouting, in church. They guard their innocence fiercely. They tend to Billy as best they can but are obsessed with not having the money to bury him. Joyce hates vegetables. Her other daughter is mentally ill but helping out as best she can. Shawna's biological mom is back on drugs and as recently as yesterday, Joyce forced her off the premises with the instincts of a good, protective parent.
The problems are a burden even to listen to. But they're real... and Joyce has begun to turn her life around, and where her life goes, all those other lives glommed onto her for sustenance? They get turned around, too.
I don't want to see one iota of the beautiful progress this beautiful woman has made degraded by something as obscene as CANCER and a Veteran's Administration that just doesn't give a hoot.
That's about it for me right now. One of the 843 smoke and carbon monoxide detectors in Marlinspike Hall is chirping, letting me know it's in need of a fresh battery. I'm going to get The Gun and shoot it. As soon as I find it....
Joyce Ann Long 
