Eye Candy

Why in the world would someone do a search using the terms "crps rsd porn xxx"?

It cheered me immensely that a visitor from LLeida, Spain found me via this interesting and insightful method.

Creo que tiene buen gusto, mi nuevo amigo! Bienvenido a mi blog.

I am Number 1 in "crps rsd porn xxx"! Who knew that my ravaged limbs were actually eye candy?

Interesting that the post you'd think might catch the eye of Google's roving bot --XXX Porn Live, Totally Naked Women! XXX Porn! -- actually comes in second, behind a post whose obscenity the discerning little bot did well to perceive: The Hammer Dance: A Terrifying Update.

CRPS is certainly obscene. I don't even need to think twice on the matter. But am I willing to consider this degenerative neurological disease as participatory in the more acceptable category of pornography? Is it possible that there is any aspect to it that sexually excites?

I imagine the foot fetishist taking a gander at my right leg, at The Thing posited as its purported end.

I imagine said fetishist reaching out a quivering hand to stroke my beleaguered foot.

In my mind's eye? I see the poor deviant flying through the air (with the greatest of ease), having not sufficiently accounted for the violence of my allodynia.

The endings to "Blow in my ear and I..." provided by CRPSers are all likely to include spontaneous dismemberment and attempts to impale.

(Wouldn't My Allodynia make a lovely long lost title? The manuscript just recently discovered tucked inside the crinkly brown-paper backing of an understated masterpiece's understated frame? Writ longhand by a Brontë, it is the story of misfires and agonies, pain quietly endured by a quiet life -- on the quiet, requisite, heathered moors.)

So much of what I do out of deference to this disease has to do with The Sensual. I can only bear the touch of the softest cottons -- flannels, preferably, though my climate does not always allow them. I no longer can sleep under sheets, not even under the amazing linens I searched out in the early days of CRPS. These days, I am sandwiched between a soft, soft quilt and one that is so worn its batting is mostly entirely gone, that has been washed over 650 times, and that I drape carefully over just my midsection. Occasionally, when it is very cold, I will cover my arms. From just above the knee, down -- there can be nothing, no sheet, nothing. Lounge wear is just about my only-wear, though the one or two times a month that I go out, I do make efforts to look nice.

I focus on things that cannot hurt me: perfumes, perfumed lotions, jewelry (though the agony of rings and watches can be overwhelming).

For some perverse reason, I began to collect socks shortly after acquiring this disorder. Today, I am always barefoot but, periodically, I enjoy getting out my socks, remembering how I got my hopes up for this pair, pink and open-gauged, or for that pair, which promised to improve circulation. For a few years, I could wear a sock on my left foot but as things advanced, those socks joined their partners in the cardboard box tucked in the closet beside shoes unworn since 2002.

It has become the height of sexual fantasy for Fred to be able to hold my hand, and when he forgets and reaches for me, the pain in my heart eclipses the burning, stabbing predictability of my various neuropathies and dystrophies. Our kisses have become so chaste.

So, yeah. Okay -- it's fine by me if you should find something of desire here.

Talk dirty, why dontcha, and tell us about it.

XXX Porn! Live, Totally Naked Women! XXX Porn!

Now that I have your attention...

One of the top ten subject searches that brings Virgin Readers to elle est belle la seine la seine elle est belle is "Laura Beckett."

Please note that she has nothing whatsoever to do with pornography!

In case you did not know, it's easy as pie to accumulate information about how, when, and from where people access an internet site, even such a humble one as this. The search information provides the occasional hint as to "why" you are here, too! So if you don't want me to know that it is you popping in, que c'est bien toi que est arrivé -- oh, just relax! I'm clueless and your anonymity is assured.

Really. I mean it!

I'll never tell.

Unless they beat it out of me. But even then, I'm not likely to remember.

Honest!

Anyway, I got to thinking [it happens, now and then]:

The last I "heard" -- through my own searching -- Laura Beckett remains paralyzed after her struggle with MRSA that began while she was in Germany pursuing the Ketamine coma treatment for CRPS/RSD. I seem to recall that she is currently in a rehab -- a situation that I hope is temporary. I believe she continues to require assistance breathing -- but I am not completely, reliably sure.

Indeed, we all send out hopeful, curative thoughts into the universe on her behalf.

There is a danger in the "I-read-it-somewhere" proliferation of information. Yes, I know I am participating in that danger -- I may even have a proprietary involvement, at this rate. But the serious searches that lead people to this blog most often pertain to some form of ketamine research, whether it be in Mexico, Germany, or in booster form within the United States, or to CRPS clinical trials.

I am sometimes moved to tears by the search terms -- the descriptive terms for the pain, most often expressed as burning, or as fire, itself; the unanswerable questions, safely posed when alone with a computer, usually about mobility, the loss of a job, of friends, of family, of sanity.

So if you get here by accident, by some haphazard search for new information about CRPS/RSD, please know that you are not alone, and that, as weird as this blog likely seems to you, it is the evidence of my effort to defy this disorder in as major a way as I can. I encourage you to curb your incessant searching and to turn, instead, to creation. You can safely trust that RSDSA, among other organizations, is more up to speed than you or I could ever be, alone.

And didn't Your Mama ever tell you not to trust strangers?

EDIT: My memory is not too messed up. The source of my tidbits of information regarding Mrs. Beckett turns out to be the August 10, 2009 issue of People magazine:

In October 2008, RSD patient and mother of three Laura Beckett, 47, of Magnolia, N.J., developed pneumonia while in a coma in Germany and was kept under for three weeks as doctors fought to save her. She woke up paralyzed from the neck down and now lives at a rehabilitation center. "It's an understatement to say things went wrong," says husband Karl, though he adds his wife's pain was so unbearable they would likely choose the coma again. Says Schwartzman: 'We've had tragic outcomes. But this is only attempted after every other treatment has been tried."

And that reminds me of two other thing I wish to stress:

**My profound respect for Dr. Robert J. Schwartzman, neurology chairman at Philadelphia's Drexel University College of Medicine -- and my gratitude on a personal level for his dedication to helping those living with CRPS.

**My belief that experiences with MRSA (and variations) can be had at any hospital in the world, no matter how clean, no matter how excellent. I do not know the particulars of Laura Beckett's infection. I understand, and am sympathetic to, the desire to blame some person, place, or thing -- but there is nothing good in that, beyond correcting whatever may need correcting. MRSA is a monster of our own creation.

Photo credit for Kitty Porn: Let's Talk Politics

If you came for the porn but stayed anyway, this one's for you!

Good  morning, Friend.

The pain from the devious trio of CRPS, AVN / ON * and SLE ** has been complicated by a summer cold.  Fred is toying with the same summer cold.  He also plays at being in a snit.

You can either pull off a snit or you cannot.  I'm just sayin'.

Most of my blog traffic comes from searches for "XXX Porn Live Naked Women."

That would be, I suppose, because I once accidentally titled a post:  XXX Porn! Live, Totally Naked Women! XXX Porn!

Anyway, what has been humbling since that accidental entitlement are the number of Folk who decided to hang around Marlinspike Hall after achieving sexual satiety.  Since they didn't get here by virtue of searching for information on odd neurological (CRPS), bone (AVN/ON), or autoimmune disorders (SLE), the many acronyms I toss about must sometimes be confusing.  Also confusing, of course, is trying to figure the layout of The Manor and the latest in La Bonne et Belle Bianca Castafiore's hijinks.  The only cure for that confusion is to read, read, read.

But I will try to clear up the medicalese, and with my usual clarity, too.

CRPS or RSD refers to Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy.  CRPS is the more accurate term, by far, and is further divided into Type 1 and Type 2.  Wikipedia, excerpted at the end of this post, does a fair enough job synthesizing the utter weirdness by which this disease is characterized.
 
For what it's worth, if you have CRPS for any real length of time, you will not just exhibit the symptoms of pain, edema, spasms, distorted spatial perception, and changes to skin, bone, nails, and hair -- you will also be certifiably Mental.  Depressed?  Well, of course.  But I mean MENTAL.  You might be so desperate for distraction that you will coopt the work of a dead Belgian cartoonist and author, fashioning your own sad virtual territory from his original brilliance.   You might hurt so badly that you sleep in strict 45-minute discrete segments and are so fatigued that you just don't know how to free The Submarine from the moat's algae overgrowth, much less fathom the intricate rules of animal husbandry necessary to maintain the herd of miniature Jamaican llamas (the Kingston strain).  Some people are so addlepated from allodynia that they take to their sheetless, coverletless beds with their arms and legs held carefully in the air, looking very much like a dead insect lying on its little dead back.  Mental.

I hurt my darling partner's feelings two nights ago when I called him a "G_d-damned, ****-sucking a$$hole" because he caused the air near my legs to move.  He was folding towels roughly 10 feet from my feet at the time.  It just flew out of my mouth before I could stop it.  It's tough to then try and fashion anything remotely like an acceptable apology.  And I can't take it back.  Mental.

If you think that's bad -- well.  Hmm.  I've never shared this before.  Hmm. 

Way back in the beginning of our CRPS saga, before we had ever heard of it, I had just had three major surgeries, one of which was to repair a badly broken ankle.  I was home, but confused by the pain and lack of sleep.  I had been in the hospital for weeks, and that left me squirrelly to begin with.  Two of the three surgeries had been due to what I now know was a Sentinel Event.  Anyway... Fred was a wonderful nurse, as I was restricted to a rented hospital bed. (O! The horror of that mattress!)  From baths to bedpans, he did it all, and without too much complaint.  He could not fathom my continuous complaints of horrible pain, pain that I claimed was getting worse instead of better.  I had plenty of pain medication, and was continually on the verge of unconsciousness from it, so what was I bitching about?  Part of his duties was the removal and application of a splint to my right leg.  It was our initiation into the fashion world of gray plastics with blue Velcro trim.

That splint came to represent a lot of stuff.  It brought unspeakable pain to me, and unspeakable frustration to Fred. 

When you experience a substantial amount of pain, you have been trained by life and nature to look for (and eliminate) its cause.  Our nightly mutual torture ritual, when Fred would align my right lower leg and apply the hard plastic splint, always brought me to tears.  I often screamed.  He, in turn, claimed sometimes that he had not even touched me or that he had only lightly brushed a toenail.  And because life and nature had trained me, I looked for an explanation for this obscene pain. 

I decided that Fred was doing something -- on purpose -- to cause it.  Seriously, I did.  I even emailed my brother and a friend, even said as much to my pastor.  Yep -- there I was, trapped in a hospital bed, unable to defend myself against this demonic physical abuse.  I was James Caan and Fred was Kathy Bates.  It's a testament to Fred's character and to my insanity that no one believed me.  Fred didn't know that I'd labelled him an abuser until the day the CRPS was finally "officially" diagnosed, when I broke down in tears.  Tears of relief that there was some external explanation for all that misery that did not involve loved ones trying to kill me...

Mental.

This blog was birthed from the pain of CRPS but has mostly served as a home for the craziness it induces.  It is hard, I know, for you folks to believe or understand that severe pain can be constant, especially as you've read about opiates and other comfort measures.  Equally difficult, and not just for laypeople, but for most non-specialist health professionals, is to deal with what has become a central nervous system disorder when what "presents" looks so purely orthopedic, or vascular. 

Some people have told me they understand better since seeing this short little art film I made back in May.  A woman with CRPS out in California Land has promoted it as an actual resource to her CRPS support group and to her doctors.  Makes me wish I hadn't been so flippant in making it, but what-the-hey... 

It's important to recognize that this is just how MY hands and feet look (a few months later, and my feet/legs are about the same, but my hands and forearms are much worse).  Some people don't have as many visual clues that something has gone awry with their neurological system, some have more.  Most people have symptoms restricted to one limb.  CRPS can and will "spread," however, which is how I ended up with all four extremities afflicted, as well as the bottom part of my face.  That is how, for example, I am now diagnosed with both CRPS Type 1 and Type 2.  The sites of original injury, my lower right leg and my left forearm/hand, represent Type 2 (causalgia), and have demonstrable nerve injuries (peroneal, tibial, ulnar). The left leg and right arm (plus the gorgeous visage) all represent the concept of "spread" and happened over the years since the original injury.  We like to call the original injury The Noxious Event.  (You have to wrinkle your nose as if smelling the scent of a dozen rotten eggs to give the expression its total oomph.) Umm, yeah, so my areas of "spread" would be CRPS Type 1, or what folks used to misrepresent as RSD, but really it just means that there is no identifiable nerve injury.

Is that clear as mud?!

Most importantly, if YOU have CRPS, don't get all boo-hoo-ey and think that you will end up like me.  Turn into a proactive (but polite) maniac and make sure you are promptly and correctly diagnosed, referred to a neurologist with experience in CRPS who will start treatment straight away.  Just DO IT.  There is an excellent chance, in that initial window of opportunity, for a cure, for a remission -- but you will likely have to take the lead.  So just DO IT.  It's confusing, it's hard, and you will meet your share of idiots along the way -- but do not lose focus.    If I may help you in any way, please don't hesitate to email me or leave a message in the comment area.  The very best place to start, and a place that will remain a great resource for you, is the RSDSA, which I urge you to join, and support.  Good luck and God speed.

And don't ever stop laughing.

Complex regional pain syndrome (CRPS) is a chronic progressive disease characterized by severe pain, swelling and changes in the skin. Though treatment is often unsatisfactory, early multimodal therapy can cause dramatic improvement or remission of the syndrome in some patients. The International Association for the Study of Pain has proposed dividing CRPS into two types based on the presence of nerve lesion following the injury.

Type I, formerly known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy, does not have demonstrable nerve lesions.
Type II, formerly known as causalgia, has evidence of obvious nerve damage.


The cause of this syndrome is currently unknown. Precipitating factors include injury and surgery, although there are documented cases that have no demonstrable injury to the original site. [...]


The pathophysiology of CRPS is not fully understood. “Physiological wind-up” and central nervous system (CNS) sensitization, are key neurologic processes that appear to be involved in the induction and maintenance of CRPS. There is compelling evidence that the N-methyl-D-aspartate (NMDA) receptor has significant involvement in the CNS sensitization process. It is also hypothesized that elevated CNS glutamate levels promote "physiological wind-up" and CNS sensitization. In addition, there is experimental evidence that demonstrates NMDA receptors in peripheral nerves. Because immunological functions can modulate CNS physiology, it has also been hypothesized that a variety of immune processes may contribute to the initial development and maintenance of peripheral and central sensitization. Furthermore, trauma related cytokine release, exaggerated neurogenic inflammation, sympathetic afferent coupling, adrenoreceptor pathology, glial cell activation, cortical reorganisation, and oxidative damage (e.g. by free radicals) are all concepts that have been implicated in the pathophysiology of CRPS.


The symptoms of CRPS usually manifest near the site of an injury, which is usually minor. The most common symptoms overall are burning and electrical sensations, described to be like "shooting pain." The patient may also experience muscle spasms, local swelling, abnormally increased sweating, changes in skin temperature (usually hot but sometimes cold) and color (bright red or a reddish violet), softening and thinning of bones, joint tenderness or stiffness, and/or restricted or painful movement.


The pain of CRPS is continuous and may be heightened by emotional or physical stress. Moving or touching the limb is often intolerable. The symptoms of CRPS vary in severity and duration. There are three variants of CRPS, previously thought of as stages. It is now believed that patients with CRPS do not progress through these stages sequentially. These stages may not be time-constrained, and could possibly event-related, such as ground-level falls or re-injuries in previous areas. It is important to remember that often the parasympathetic nervous system is involved with CRPS, and a part (subset) of the parasympathetic system is the autonomic (think automatic, like blood pressure regulation or breathing or sweating) nervous system can go haywire and cause a wide variety of odd complaints that are not mental in origin. Be sure and investigate autonomic dysfunction or disorder if you think you may have one of the often distinct varieties of CRPS. Rather than a progression of CRPS from bad to worse, it is now thought, instead, patients are likely to have one of the three following types of disease progression:

1.Stage one is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm. The vasospasm is that which causes the changes in the color and temperature of the skin.
2.Stage two is characterized by more intense pain. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.
3.Stage three is characterized by irreversible changes in the skin and bones, while the pain becomes unyielding and may involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening and thinning is more dispersed.

* AVN / ON = avascular necrosis, osteonecrosis
** SLE = Systemic lupus erythematosus

did i tell you fred bought a piano?

Flickr -- By emster214  

 Emily Chastain

ready to stop, ready to give in, up.  give out.  [how many prepositions work with "to give"?]

monday got me.  the screaming meanies, the spaz attacks, dystonia, whatever -- and i don't give a royal poop if you are a regular reader and know what i'm talking about or if you stumbled onto this blog in your quest for "XXX Porn, Live, Totally Naked Women, XXX Porn!" -- variations of which are my number one search terms.

not that i was stunningly functional over the weekend... i got so low that i asked fred to simply sit and hold my hand. it helped because we got to talking about brooklyn and old maps, i got distracted, and so had a few minutes of wonderful.

i cannot see -- fuzz is the operative word.  double vision, or vision with a charming echo is what i trot out for medical types.  "i can't see shit" is what i say in more normal circumstances.  sometimes i say seemingly contradictory things, like "you see that?  i can't see that!"

of the three new drugs i was excited about, it looks like a possible triple play -- all called out before getting any chance to slide for home.  pain has returned to normal 8-9 out of 10 on the freaking pain scale.  the screaming ninny-meanies are worse than they've ever been, unrelenting and soul destroying. the memantine? how am i to judge?

last week i went to the eye doc, who snickered when i said i was ready to have that surgery she had been referencing -- a combo cataract/glaucoma operation.  it turned out none of the anesthesiologists at her hospital would touch me with this active bone infection.  she did give me permission to get new glasses, finally.

so... monday.  pain management dood's Nurse Practitioner, then Fred would peel off to the pharmacy while i went to the lab and made deposits, following which we'd meet up with dear darling ruby the honda crv and toodle off to Tête de Hergé's single WallyMart west of the Lone Alp.  the eye doc had opined that the new eyeglass script might last a month, three months, a year, five years, she had no freaking idea.  so i planned to sink very little money into these spectacles.

but i was shopping with the aid of one of the world's most reknowned consumer know-it-all. my fred.  when i rejoiced over finding a NINE dollar pair of frames that would do nicely, he snorted.  i found myself led by the nose to the maginc "flex" frames, frames he claimed i could not destroy.  i never plan, of course, to destroy my frames, but sometimes do.  i toss them on the bed and a feline waits for the dulcet tones of my sleep apneic snoring before snatching them for a good chew, to be followed by a great, fun game of "where the hell are my glasses, you nasty cat?"  i drop them several times a day and pick them up with the unforgiving tines of my grabbers.

so the flex frames were my pick.  yes, i looked at a grand total of 2 frames, and even those 2 i couldn't really see.  that's why fred was not set loose upon the WallyMart, he had to serve as fashion consultant to this prednisone moon-faced, fat pads galore, perpetually confused looking visage.

"um, you know this a pretty serious prescription," stammered the 12 year old eye specialist. "it's going to cost extra,"

of course, it is gonna cost extra, dear heart!  c'est moi!

then i had a shopping list that we proceeded to ignore because i was fading fast.  would someone please tell me these fat people are driving carts all over the store, stopping with a screech in front of the generic "muffin top" super-sized bags of cereal, leaping and pirouetting from the constraints of their motorized, armored golf carts to grab 'em?  some of these twirling folk stopped to talk to me, figuring i was both simple-minded and bodily disabled, as i was peering at the line up of products with a drooling incomprehension.  it looks like a yogurt container but it could be ricotta or cottage cheese.  it costs with 5-something or 8-something which seems ridiculous for any of those possibilities, except maybe a fine ricotta.  or a whole milk actual greek-from-greece yogurt.

i had a long grocery list but gave up after frozen strawberries, frozen peaches, frozen mixed berries, yogurt, and milk.  and fake sugar.  all of which fred had to find and i had to buy.  [these are my comfort foods.  frozen fruit with milk -- consumed while still frozen -- makes me feel, at least, less febrile.  yogurt is also a necessity in this world of eternal antibiotics.

we got home, i got into bed before going to the bathroom and cried for half-an-hour about that, got up and walked to the bathroom, crying the whole way, made it back to bed, but barely, as i was a-rockin' this a'way and that a'way.  then i just lay there and allowed my legs to jerk and spasm while i watched the wind-up to the foreign policy debate.  i thought for sure that would stop 'em.

and i lied.  i lied to friends, family, and doctors.  i kept up the story of the drugs helping 30%, or maybe 25%, except for the one drug that i had not yet titrated to the highest dose, of course.  the one making the spaz attacks worse?

i won't get labs back until this afternoon but i got a preview late yesterday.  super nurse called to tell me to stick to the 150 dose of the spaz med and not double up to 300 on wednesday.  i took the chance to ask what my hemoglobin was, as i was convinced it had to be under 7, i was that tired.  nope, 11.  however, my wbc was 14.9, and, again i say, that is on the antibiotic...  i don't know about liver function or kidney function, or c-reactive protein, that'll be later today.

but i don't care.

i listened, as i could not watch, to frasier and the golden girls, followed by hours of i love lucy all night long.

i have failed at everything.

oh -- i did manage to ditch all my GOOG at $700 last week just after they resumed trading.  i guess that's something of a coup, as i only lost thousands of dollars versus more thousands of dollars.  yay, me.

i would like to be put in a nice, old-fashioned hospital, snowed, washed, wrapped in clean sheets and blankers, my vision made perfect, the nurses offering gentle massage whenever i should arch an eyelid open, followed quickly by more no-jerking, no-pain magic meds.  there would be a strange lack of doctors and tests and surgeries.

and fred, of course, would be set free with his guitars, ukulele, and the new piano.  did i tell you he bought a piano?  my only criteria was that my laughing buddha could still sit in that spot, front and center, belly begging a rubbing.

To Redmond, Washington: IE9, Windows Vista

[1/12/2015, Editorial Note to my new friend:  You are doing very well helping out with the statistics -- thank you! Your affinity for the tongue-in-cheek is duly noted, jotted down in a scrawling hand in the Friend Log of Preferences. What is your favorite color?  Still, the silence is deafening.  I worry about you, also -- worry being just one of my métiers. I worry that you are not getting enough sun, sufficient exercise, fresh air. When did you last have a good salad, dressed with peppers drenched in white balsamic vinegar?]

*****     *****     *****     *****     *****     *****     *****     *****     *****     *****

How may I assist you?  You are focusing, by my best guess, either on the Lindsey Baum case or my adoration of José Ochoa.  If it is my charming self that you study, we could drastically improve your time management issues,  Let me know in a comment and perhaps I can cut down on the amount of time you have to spend wandering these vast corridors, reading the same redundant, tired posts over and over, again and again, ad infinitum.

It would be a boon for me, too. Since, about 96% of your visits involve either whole months or, due to recent changes in the archive layout, whole weeks, you could really bump up my page view stats by choosing individual posts/pages.  You know, like you did last night, when you kept requesting "XXX Porn! Live, Totally Naked Women! XXX Porn!"

One hand washes the other!


18:55:01 -- 16 minutes ago


18:45:58 -- 24 minutes ago


15:04:51 -- 4 hours 2 mins ago


14:35:00 -- 4 hours 33 mins ago


14:17:37 -- 4 hours 51 mins ago


© 2015 L. Ryan

If It's Sunday, It's Bad Videos!

I'm going out on a limb and declaring someone's search for "baclofen porn" to be the weirdest search of this blog to date.  Baclofen is a drug for spasticity.  Baclofen porn?  I cannot even imagine what that means, but I'd love to know.  So... whomever you are, s'plain yourself!

Late last night, I decided to reintroduce myself to some of the minor technology that has piled up in our well-appointed apartments here in the West Wing of Marlinspike Hall.  Won't bore you with long stories about Best Buy, UPS, Amazon... but will divulge that they did not come off as brilliant marketers over the holidays.

I had trouble sleeping so I loaded and tweaked and played with a new mp3 player that will hold more than the 6 songs my last one managed.  I did the tweaking and playing part of that in the soft swinging hammock of the velvety dark -- and was repeatedly attacked by one Buddy, the outrageously large kitten, our Maine Coon.  He's undergoing yet another growth spurt and that means, too, a certain recidivism in his behaviors, mostly chewing -- wires, anything plastic, doors, canes, wheelchair wheels.  I got him settled down, eventually, by doing what he cannot resist -- toy with his elastic ears.  Pulling them, scratching them, praising their magnificence.  I set the player to a 60-minute sleep mode, blew all the tension out of my body via my mouth, and let my mind go with the music.

The little faker.  Five minutes into my relaxation, KABOOM.  Imagine Buddy landing on your chest, claws clawing, vocalizing like a feline maniac, going after those noisy little wires, yanking the earbuds from your aural cavity with fierce violence.

He's fascinated with music.  Or noise.  Fred bought an old spinet piano several weeks ago, and Buddy lurks as Fred pecks at the newly tuned keys, looking over his shoulder, trying to find a way inside (what is a piano, after all, but a big box?).  He walks on the keys, jumping straight in the air sometimes at the sound he himself produced.

Yeah, so another piece of electronics that mocks me is the video camera,  I loved my little Flip thingy, but I also dropped it into a sink full of hot soapy water.  The new one, refurbished, is a mainstream model, meaning:  it's not for me!  I can't get my hands to find one ergonomic boon in the design of the thing.

So, of course, we decide we're gonna make a movie of Buddy and the Piano.  I dug through piles of buzzing, whirring electronic gadgets, found the camcorder, and did a test shot of the Maine Coon flexing his paws and claws in preparation for a Beethoven piece he's been practicing.




Then, of course, as we proceeded in solemn cortège to the funky spinet piano (for which Fred has yet to purchase a bench), and Fred began a rousing version of Oh My Darling Clementine while the cat lolled on the cat tree just behind Fred's right shoulder.  Buddy mostly stared (glumly, very glumly) at me and the stupid camera.

The stupid camera's battery died.

Okay, fine.  So this morning, after the Night of MP3 Battles, I figured I would get the now properly charged camera out for some practice.  It requires too much of my hands but practice can occasionally improve performance, I hear.

But I only produced nonsense.  So, of course, I am posting it, with these caveats:
1.  I know my house is a mess, so hush;
2.  No, I do not abuse Miss Marmy Fluffybutt, I don't care what she tells the SPCA;
3.  I know my filming skills suck, thankyouverymuch (see aphorism about "practice" above)
4.  Fred was worshiping with the Militant Lesbian Existential Feminists;
5.  Yes, I know my feet and hands don't "look right." I have CRPS, you ninny;
6.  I'm really sorry for posting junk... but I am bored and the only other things to do right now are dishes, laundry, and vacuuming;
7.  Ignore the raspy voiced narrator, she is an idiot.

Oh, and I promise not to encourage Buddy in his interest in the microwave.






okay, so this video is even worse than i imagined... also, i forgot that youtube won't accept (from me, at present) vids longer than 10 minutes.  so you missed the update of my feet.  have no fear, we'll capture some beauty shots of those things at the end of my legs.

OMG: Bianca does Dr. Phil

We try, Fred and I really do. But we can't watch her all the time, and really? Why does the onus fall on us? Am I truly expected to monitor the computer use of a mumblymumbly year old grown woman, and in a place as huge as Marlinspike Hall, deep, deep in the Tête de Hergé?

It happened at 3:38 in the morning. Yes, I was up but hardly felt like looking over the shoulder of a drunken Castafiore, as she picked and pecked her way across the keyboard.

She's taken to frequenting local pubs after her evening performances at the Opera House, belting out encore performances of L'air des bijoux.

The only way I could tolerate a late night, early morning onslaught of je-ris-de-me-voir-si-belle-dans-ce-miroir-oir-oir-oir? Whiskey. Stoli. The dregs of a house red.

So, out of appreciation for my liver function, I stay safely ensconced in our designated area of The Manor.

La Bonne et Belle Bianca Castafiore decided to surf the net before passing out in her suite of rooms -- rooms that she and some of her ne'er-do-well operatic thugs refurbished last summer, in the style of François Ier. Now *that* was perhaps an episode that Fred and I might have prevented -- but she's wily, very wily, that Castafiore.

Apparently, she is a fan of this Dr. Phil person, a tall, chunky, bald man of indeterminate age -- or 59. As documented in the Dickipedia, Phil McGraw is a "doctortainer of the highest order." Still, Bianca is perhaps not the sort of fan base that The Dr. Phil Brand was designed to attract, and in that lies much of her charm and amazing ability to sour the stomachs of her interlocuteurs.

How was he to know that she idolizes Michael Vick? Still, had he known that she idolized Michael Vick, would he have curtailed the expression of his disdain for that fine, upstanding, dog-murdering human being? Probably not... but we will never know.

A docutainer who makes massive use of slapping around The Obvious with his down-on-the-farm and well-fertilized twangy wisdom, Dr. Phil wrote several blog entries on the controversial subject of animal torture, which obviously cried out for the inclusion of some Celebrity Twit as his Easy Mark, his Straw Man, his Bitch. To wit: Vick.

The doctor is a master of damning with faint praise, a trait that I've always found repugnant. As I perused his blog this morning, after discovering what La Bonne et Belle had done, I could see how Bianca's buttons might have taken a beating.

The man is brutal, despite his hominy homilies. He viciously attacked, not just people who murder animals, but "Mommies" who parent (and drive) while under the influence; He even dared to criticize the recent Gang of Gaffes -- including Serena Williams and Kanye West, though Joe Wilson got off with just a pinch of the cheek. Clearly, Dr. Phil is not afraid to wade hip deep into controversy.

Anyway, in the wee hours of the morning, The Castafiore let loose. I hope Dr. Phil is okay.

We've seized her laptop and hidden it well. The deal is that she'll get it back as soon as her behavior provides proof that she's no longer subject to the demon of stinkin' thinkin'.

She seems to have at least made judicious use of SpellCheck and her English language dictionary -- although she is typical of adult foreign language users, in that she is at her best when... well, when slightly "disinhibited":



Bianca Castafiore says:
September 22, 2009 at 3:38 am

Dr. Phil, you have begun to frustrate me.

Not because of your various (safe) opinions voiced in your blog, but because you couch some of your most interesting notions in disingenuous ways. Your tongue may get stuck in your cheek!

“I don’t drink, but…”
“I haven’t examined him, but…”

The worst of all, though? Your tacit approval of Joe Wilson’s staged and boorish behavior during a speech by the President of the United States.

He was wrong… but he gets a bit of a good-old-boy wink and a nod — because you’d never want to criticize him for being “passionate.”

Clearly, you are saying that Michael Vick is a sociopath. *That* is an interesting statement and I would love to hear you expound upon it.

Vick was convicted, sentenced, and served that sentence. He will never be free from constant public scrutiny. It doesn’t matter in the least whether he can check off as accomplished any of the things you’d like to mandate, because those mandates only exist in DrPhil Land.



In defense of La Bonne et Belle Bianca Castafiore, there are troubling things about -- as she put it -- life in DrPhil Land:
The Doctor Is Out (of Touch)

Symptom: Two high-profile fiascoes and a career of dubious decisions
Diagnosis: Dr. Phil doesn't have a license or a clue

By Barbara Card Atkinson
Special to MSN Entertainment

Maybe it's awful to kick a walrus-mustachioed man when he's down, but I am all for the recent public backlash against Dr. Phil. His producers bailed out one of the teens jailed for (allegedly) violently attacking a Florida teenager, in exchange for an exclusive interview with her, only to backpedal in the face of public disapproval. This boundary crossing is just the latest in a string of Dr. Phil's missteps; it's high time we all admitted that the good doctor is out -- out of touch, out of step and sometimes almost out of his homily-riddled mind.

Dr. Who?
Phillip Calvin McGraw, best known as Dr. Phil, hit the airwaves as Oprah's golden boy in 1998. She seemed to enjoy his straight talk and the way her audiences responded to his no-nonsense approach. It was refreshing, at first, to listen to a shrink who gave advice free of psychobabble buzzwords; he was even a little folksy, some homespun, gingham-aproned Freud. This is the guy who said, "Sometimes you make the right decision, sometimes you make the decision right." Adorable, right? Of course, he wasn't really a shrink, and he hasn't seemed to take his own advice. McGraw has a history of not making the right decisions, nor has he done much to right them.

Doc in a Cheap Suit
It's a sad fact that, these days, many a high-profile "personality" is going to have at least one good lawsuit lobbed his or her way, but Dr. Phil seems to repeatedly provoke lawsuits. The Texas attorney general investigated him for a possible health club scam in 1973. McGraw sold expensive lifetime memberships to a health club in Topeka, Kan., and resold the contracts to a financial institution, so the members had to keep paying whether the club existed or not. According to the court papers, three different Topeka banks sued him for more than $40,000, but he never showed in court and monies were never recovered. He had moved on to Texas, where he obtained a doctorate from the University of North Texas and began to practice psychology.

In 1989, the Texas State Board of Examiners of Psychologists imposed disciplinary sanctions against McGraw for what was deemed an inappropriate "dual relationship." McGraw admitted he hired one of his clients, a 19-year-old woman, to work in his office (can you say "breach of ethics"?), but denied her claim of a sexual relationship. The board ordered McGraw to pass a jurisprudence exam, undergo a psychological evaluation, take an ethics class and have his practice supervised for one year. Did he make amends and make it right? Well, as of 2008, no. Nineteen years in, and he still hasn't met the board's conditions. His license to practice psychology was revoked and, from that point on, he has not been licensed to practice psychology at all. As the man himself has noted, "Failure is no accident."

McGraw, who said, "We teach people how to treat us," exhibited poor judgment again when he decided to feature convicted murderer Laurie "Bambi" Bembenek. Bembenek was scheduled to appear on the "Dr. Phil" show in 2002 to clear her name. It didn't go well. She later filed a lawsuit against Dr. Phil and more than 50 of his staffers for, she said, being held against her will in an apartment with no way to contact the outside world, while awaiting potentially show-stopping, name-clearing DNA results. Bembenek claims the forced confinement led to a panic attack, which drove her to escape by climbing out a window. She fell and shattered her leg, which later had to be amputated below the knee. Despite whether Bembenek was detained against her will, one wonders at the "stinkin' thinking" involved in allowing an emotionally fragile, convicted murderer to become so agitated that she felt her only recourse was to shimmy down the outside of a building on a bed sheet ladder.

In 2006, Dr. Phil was named as a co-defendant (along with CBS) in a lawsuit filed by two brothers in relation to the Aruban disappearance of U.S. citizen Natalee Holloway. McGraw hired a private investigator to interview the Kalpoe brothers. They claimed they were recorded without their knowledge and the material was doctored, but later broadcast as being a true representation, portraying them "as engaging in criminal activity against Natalee Holloway ..."

Sure, maybe McGraw's involvement would break open the case as the one tactic that had so far eluded the combined forces of the U.S. and Aruban officials -- a trained television host.

Daddy Issues
McGraw has long been an outspoken critic of pornography. Eyebrows were raised, then, when he stood as the best man in his son, Jay's, 2006 wedding to Playboy playmate Erica Dahm; the elder McGraw even hosted the wedding at his Beverly Hills, Calif., mansion. Against porn? Fine. Supportive of his son, regardless? Terrific. Altering his "Dr. Phil" Web site to remove all of his comments about porn right after the fact? Umm, "What in the hell were you thinking?"

In January 2008, McGraw's behavior motivated a psychologist (an actual one, with a license and everything) to lodge a complaint with the California Board of Psychology, alleging that Dr. Phil was practicing illegally when he visited Britney Spears at Cedars-Sinai. McGraw was, reportedly, counseling Spears as well as inviting her to join her family on his stage for an upcoming televised intervention. After his unannounced hour-long visit, he made several long-winded statements on his show about Britney's mental state, which really chapped the family spokesperson. ..

Testing Patience
Who hasn't Dr. Phil ticked off? Thelma Box, a former business partner, alleges that McGraw sold his stake in Pathways, their self-help company (started in 1984), an entire year before he told her. Box also insists she co-created and co-authored the materials used in Pathways seminars, material that McGraw uses today in his show, but she has never been given any credit. [...]

And now this: Last week, Dr. Phil had his producers bail out Mercades Nichols, one of the six teenage Florida cheerleaders accused of beating another girl, videotaping it and posting the footage on YouTube. Nichols signed an exclusivity contract with McGraw's people, allegedly in exchange for her $30,000 bail. In light of the public outcry, producers have since announced they made an error in judgment and they have no plans to go forward with the show. Dr. Phil has yet to make his usual half-apologetic public statement, although now might be just the time for McGraw to heed his own advice: "If you want more, you have to require more from yourself." [...]

Maybe the problem isn't McGraw and his stern-talkin' daddy-tude; maybe the problem is that people are listening to him as if he's got a clue, or at least more of a clue than the rest of us. All facts point to the contrary. Just glance at McGraw's personal life (read his unauthorized biography, "The Making of Dr. Phil," for details about his never-mentioned first marriage and early company dealings); look at his business track record. Or take it from me. Just like Dr. Phil, I'm an unlicensed unpsychologist, and my advice to you, in classic Dr. Phil speak is this: "That dog really, really don't hunt."

Barbara Card Atkinson is a frequent contributor to MSN Entertainment.

On CRPS: Physiotherapist Holly v. Psychiatrist Bass

A wonderful response to what amounts to a poor opinion piece.  Here is the road map to the original "personal view":

VIEWS & REVIEWS
Personal View
Complex regional pain syndrome medicalises limb pain
BMJ 2014; 348 doi: http://dx.doi.org/10.1136/bmj.g2631 (Published 28 April 2014)

The "Personal View" was proffered by:

Christopher Bass 

consultant liaison psychiatrist, 

John Radcliffe Hospital, 

Oxford OX3 9DU, UK

Christopher.bass@oxfordhealth.nhs.uk

Psychosocial factors may be more important than biomedical ones in type 1 disorder, writes Christopher Bass... 

I am a psychiatrist who has worked in general hospitals and pain clinics since the 1970s and have assessed many patients given a diagnosis of type 1 complex regional pain syndrome (CRPS). The syndrome is often diagnosed by inexperienced junior doctors when confronted by patients with unexplained symptoms, especially pain in the hands and feet. CRPS was once called algodystrophy, then reflex sympathetic dystrophy, but by 1994 the sympathetic component was abandoned and the current term was introduced.1 CRPS is part of a larger problem in chronic pain and reflects our lack of knowledge of causal mechanisms. 

It has been my impression that increasing numbers of patients are being diagnosed with this disorder, and that incidence rates are increasing (estimates in 2007 of 50 000 new cases annually in USA).2 In my opinion excessive reliance on this so called biomedical diagnosis for these patients is misguided. How has this occurred? 

Several new diagnostic criteria have been proposed,3 but they are not sufficiently objective or reliable.4 For example, criteria such as “continuing pain that is disproportionate to … 

 [This is where you have to fork over some bucks to continue reading... Entirely your call... Sign up for the temporary 14 day free trial to BMJ... But I bet Domino's has a hell of a special, maybe some sort of Kentucky Derby celebration... And for what it is worth, I have a current balance of $22,000 in credit card bills, most of at a very acceptable short term APR, so don't get too excited, youse true friends and relatives, especially given the rest of my medical debts, not subsidized by corrupt corporate banking, but by mine feeble monthly payments, designed to confound the best of creditors!]

This is where I insert more of my personal crap, because... because..?  Come on, you know why! Because:  Whose blog is it, anyway?

Because:  I've established my bona fides in these pages.

Because:  I'm in a shitload of pain right now, such that breathing in, so crucial to establishing one's shield against shitloads of pain, hurts so much that I am questioning the value of such a dull, repetitive bodily function.  Given that, you can just eat my grits should the rude insertion of my overblown opinions get your tidy whities in a discomfiting bunch.  If you're reading my erudite blog without the girding of underwear, perhaps you're looking for THIS (every blog post containing the word "porn").

My inserted personal crap amounts to this:  BMJ is worth the money.  Yes, more so than pizza.

Okay, returning to this exchange of opinions over several topics of common disagreement among health care professionals both interested in CRPS and interested as well as INFORMED about CRPS.

Sure, the response also is opinionated, but restrained by science, and supported by it, as well. It was written [well] by: 

 
Janet T Holly, Physiotherapist Clinical Specialist in Pain Sciences; 

Clinical Researcher at The Ottawa Hospital Rehabilitation Centre; 

Clinical Epidemiology Program, 

The Ottawa Hospital Research Institute, 

505 Smyth Road 

Ottawa, Ontario, Canada

If I could fit her "rapid response" on a tee shirt, my holiday shopping for the year would be complete.

Maybe a custom coffee mug?  Or a very large shot glass?  En tout cas, here it is, earning the text background color of light, healing green versus the hint at purple prose given the good psychiatrist who first opined above.

It was with great interest that I read Dr. Bass’s viewpoint in BMJ. I am a physiotherapist who is a Clinical Specialist in Pain Sciences working in Canada and long have been frustrated by the impact of clinician language and behaviour on many rehabilitation diagnoses. I have 23 years working with pain patients and 5 to 6 years working with Complex Regional Pain Patients as a critical mass. I too have felt at times labels can be harmful for patients receiving adequate comprehensive care. Unlike Dr Bass however, I find the label chronic pain or non-specific pain can be just as harmful as patients are frequently told, “there is nothing I can do” or “get over it”. Both responses are inappropriate but aid to highlight that changing the label does not change the problem that Dr. Bass is trying to address. Non-specific pain does not immediately lead to proper assessment and treatment of psychosocial flags.

He is correct that there is some cause for criticism of the Budapest Criteria and those involved in the world of research of complex regional pain are striving to improve upon these. However, The Budapest Criteria do have a specificity of 0.68 and a sensitivity of 0.99. In the world of clinical diagnostic testing, there are certainly worst tests for sensitivity and specificity. Continuing pain, which is disproportionate to the inciting event, is not the sole diagnostic criteria but rather they must report both one symptom in three or more categories and one sign in two or more categories at the time of the assessment. 1

The studies he alluded to re brief immobilisation and prolonged casting of a limb producing signs and symptoms mimicking CRPS drew no definitive conclusions re causation or potential future treatment. 2,3 Rather they were an insight as to where researchers may want to direct their efforts further. It is far too early in the game to be taking two studies and drawing conclusions re causation when the neurophysiology and immunology behind CRPS is complex and still being determined.

CRPS can cause profound disability in some but not all patients. The reference he used to support psychosocial factors being a potential causative factor is for general chronic pain.

Beerthuizen et al, 2011 actually did not find psychosocial factors pre-disposed individuals to CRPS. 4 This also is only one study and as such too early to make a judgment.

There are some distinct differences in those with chronic pain versus those with CRPS and the literature should not be intertwined. One of the main principles of applying best practice principles to a population is the literature has to match the context of the population. 5 Patients with chronic low back pain do not get spontaneous swelling, cooling or heating of a body area, loss of motor initiation, trophic changes, extensive loss of sensation etc…. the two groups cannot be compared. In addition, there is a subgroup of CRPS that have pain but the biggest disabling features are the temperature changes, trophic changes and swelling, not pain. As such, the term arm ache or leg ache or non-specific arm pain does not describe the population well at all. In addition, there are treatment techniques such as graded motor imagery that have some clinical level of success for CRPS but are not so useful for chronic non-specific low back and neck pain. 6 Lumping all pain diagnoses together will limit the usefulness of matching treatments that have positive effects on the subgroups where they are successful.

I agree screening for psychosocial factors is necessary to manage any condition, not just pain conditions. The tools he mentions are good ones for depression and pain and easy to use by all clinicians in busy practices. I would add screening for sleep dysfunction as this too has a large impact on healing and pain control. Screening for depression, anxiety and sleep dysfunction was recommended by Rakesh, 2012 at the International Association for the Study of Pain Congress in Milan based on published literature. 7,8

Dr Bass makes a good point in his title that CRPS should not be medicalised. However, this holds true for any condition in medicine from pain to cardiac issues. The key to health in any domain is self-reflection and self-management with occasional interventional procedures from physicians or allied health professionals. True health is a work in progress and takes time. If we add medicalization and the usual resultant fear to any diagnosis, we disempower patients from managing their own care. Iatrogenic harm happens in all medical diagnostic groups not just pain patients. We, the entire medical community, do not cure patients. We teach them to manage the changes that aging, trauma and exposure to illnesses cause. The problem Dr. Bass wants to tackle is not the label we put on our patients but rather the lack of evidenced based knowledge of health professionals and ability at identification of psychosocial flags early on (optimally before CRPS even occurs by their general practitioner) and management of these flags. We must practice holistically not just in our areas of specialization. We also must start and continue to train incoming practitioners about the power of language, excessive diagnostic procedures and the need to be truly present with all diagnostic groups of patients. We need to let patients tell their narrative so that belief systems/fears etc... can be expressed and addressed immediately in every day non-threatening language. No one is too busy for this as we spend the time later down the line managing beliefs once they are ingrained. We also need to teach our clinicians about knowledge translation to patients, styles of learning, readiness to change and barriers to learning. Without practicing with all these tools in place we cannot demedicalise any diagnosis nor empower our patients to manage it. Changing the label only pushes the problem to a new label.

1. Harden, R. N., Bruehl, S., Perez, R. S., Birklein, F., Marinus, J., Maihofner, C., Lubenow, T., Buvanendran, A., Mackey, S., Graciosa, J., Moqilevski, M., Ramsden, C., Chont, M., Vatine, J. (2010). Validation of proposed diagnositc criteria (the "Budapest Criteria") for complex regional pain syndrome. Pain ,Aug 150, 268-274. doi:10.1016/j.pain.2010.04.030

2. Schott Gd. Complex?Regional?Pain ?Syndrome? Pract Neurol 2007;7:145-57

3. Singh HP, Davis TR. The effects of short-term dependency and immobility on skin temperature and colour in the hand. J Hand Surg Br 2006;31:611-5

4. Beerthuizwn A, Stronks DL, Huygen FJ et al. The association between psychological factors and the development of complex regional pain syndrome type 1 – a prospective multicenter study. Eur J Pain 2011; 15:971-5

5. Dartnell J, Hemming M, Collier J, Ollenschlaeger G. Putting evidence into context: some advice for guideline writers. Evid Based Nurs 2008; 11:6-8 doi:10.1136ebn.11.1.6

6.. Moseley GL: Graded motor imagery is effective for long-standing complex regional pain syndrome. Pain 108:192-198.

7. Gupta A, Silman AJ, Ray D, Morriss R, et al. (2007). The role of psychosocial factors in predicting the onset of chronic widespread pain: results from a prospective population-based study. Rheumatology 46(4):666-71.

8. Meyer-rosberg K, Kvarnstrom A, Kinnman E, Gordh T, Nordfors L-O, Kristofferson A. Peripheral neuropathic pain – a multidimensional burden for patients. EJP 5(4):379-89 doi:10.1053/eujp.2001.0259

Competing interests: None declared

Write on, Janet T Holly, Physiotherapist Clinical Specialist in Pain Sciences and Clinical Researcher at The Ottawa Hospital Rehabilitation Centre, undoubted star of the Clinical Epidemiology Program... and, apparently, skier extraordinaire. 

Faust Before Coffee

For someone who loves language, to be reduced to a series of acronyms is beyond insulting. For the divine Bianca Castafiore -- such a fate would be a horror, although I suppose it would ultimately be recuperated as aria, as Italian air.

Me, I do not often wake "in the morning," but to claim some measure of normality, I will prepositionally use the phrase (precious, precious, much too precious).

I'm sorry about that. I cannot, however, allow you to touch my sentence.

Get the hell away from my sentence!

Du calme, du calme, ma chère...

When I wake in the morning, there is no thunder of trumpets in my brain announcing the triumphant news that I remain the inimitable Bianca Castafiore -- as in "(blow blow flap lips) congratulations! you remain (lip buzz) Bianca Castafiore (slowly slide the pitch)!"

No, when I wake, I make no sudden sound, no sudden movement, and pray that none are made on or around me. The cats that have kept me safely in the bed all scatter, willing to let me face the risks of our little pocket of weak gravity in their strong feline hope of kibble. Bianca, she would break into song, she would dance the mirror before her Bianca-face, singing "ah, je ris de me voir si belle dans ce miroir..."

It is a rare woman who can bring off Faust before coffee.

My right hand snakes toward the bedside table and snags first the hillaryclinton.com red, white, and blue water bottle, and then the other (more amber) bottles of momentary import: of percocet, of ibuprofen.

There are days I need help taking the pills, and assistance drinking the water. But those days are rare. Mostly, I medicate myself by myself.

Not quite alone. There *are* those cats: Marmy, Dobby, and Sam-I-Am. Were my bed a raft out on the sea, those three would be... sharks, circling. They know from experience, though, that it will be a good half-hour before I budge, and they are kind. While we wait for the medicine to kick in, we gently pet, we purr. Yes, we vibrate!

Bianca Castafiore *only* sings L'air des bijoux of Marguerite from Gounod's Faust; She sings it loud and she sings it often. As she is not called on to sing a high C, we do not know if she can shatter glass. We do not know if *she* vibrates.

"Ah, je ris, de me voir si belle, dans ce miroir..." O! Marguerite! Beware! It is Méphistophélès who gives you jewels and a mirror! Infernal, insightful, so clever -- the devil. And there you are, decked out and loving what you see.

Looks can be deceiving. This post will bear the label of "The Acronyms." The acronyms to which I will usually be referring are:

SLE = Systemic Lupus Erythematosus
CRPS/RSD =Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy
AVN = Avascular Necrosis
AI (times two: AI! AI!) = Adrenal Insufficiency & Aortic Insufficiency

Lupus is often treated with steroids, judiciously, it is hoped, as prolonged use of corticosteroids involves a good number of significant side effects. Somehow, I ended up on high doses of steroids over much too long a time. Not always for SLE. Sometimes for CHF. Sometimes for asthma.

As the kids say: Whatever.

It is possible, even probable, that treating my SLE in that manner resulted in a killer case of avascular necrosis, AVN. Don't suggest that to your average medico, though, as it will cause them to go dark and mutter something that sounds like "informedconsentinformedconsent..." and then they poop their pants.

AVN also serves as the acronym for an adult video organization. Porn. Not erotica. Pure unadulterated smut. The good stuff.

With AVN, the bones, in layman's terms, errr... well, they rot. They become necrotic.

(Yes, you genius! Exactly! As in necrosis. Very good. All of that Latin eventually pays off -- you can decipher much medical terminology thanks to the etymologies still swarming within the brain pan, that great bucket of os!)

It hurts quite a bit. Untreated, the involved joints eventually collapse. I had some joints replaced -- a few successfully -- a few badly. Then, when further treatment became impossible, my life was in large part subsumed by the pain of bone-on-bone. Bone-on-Bone like Stratford-on-Avon.

Ashton-under-Lyne. Bexhill-on-Sea. Stoke-on-Trent.

Where was I?

Tête de Hergé?

The arm that inches toward the water, the hand that pries the pills from their plastic home --they hurt more than I have the capacity to express.

The pain of AVN, though, pales next to the pain of CRPS/RSD.

There will be time for the packing and unpacking of these alphabets. For now, I am content to remember that first half hour, each minute that much closer to movement, to the chachacha of the hobble to the bathroom, the graceless kerplunk into the power chair.

Marmy, Dobby, and Sam-I-Am precede me and lead the way to good chow, good kibble, and mugs of snooty white liberal fair trade coffee, steaming. We are deceitful in our appearances; We hum as if we could sing; We smile as if we mean it; We feel so much more Bianca Castafiore now, and so much less a dumpy, dull, decrepit educator, retired.

"Ah, je ris de me voir si belle dans ce miroir..."

Brayden Martin: Always on My Mind

Hi, Dear Readers --

It is good to be back after my hiatus dealing with spamming and reprobate relatives.  How did those problems work out?  Well, amazingly enough, the universe conspired to remind me what matters, and what does not.

If you're smiling, it's likely that you rank quite high on my "He/She Matters List."  It's akin to a gratitude journal in shorthand.

Relatives that I don't really know who are acting like hoodlums are hoodlums and, insofar as they do not cause my Mother-Unit stress or steal her worldly goods and happy outlook, they may merrily launch themselves off their local choice of cliffs.

Pornographic spam was generated due to my vocal refusal to allow truly suffering people to be taken advantage of by CALMARE / CTTC and the shady practitioners who are having a last ditch moment of money-grubbing as the whole affair circles the drain.  I think flooding my blog with porn spam is a bit ridiculous but these are not ethical people.

So let's concentrate on someone who matters.

Brayden Martin comes to mind.  He's had another rough spell, and, finally, his mom Maranda and his primary oncologist decided an early MRI to assess the efficacy of this new chemo protocol was warranted.
That happened yesterday and today Maranda and Brayden found out that, unfortunately, his tumors have doubled -- which was, I think, what Maranda already sensed.

She (and he, of course) is a tough cookie.  But no one is tough or ever prepared for this journey, be it the journey of a child or an aged beloved grandparent.  There is no preparation.

Brayden is charting new territory for relapsed pediatric medulloblastoma.  There are NO protocols to which they can refer for guidance.  And so Maranda and her guiding physicians, and her faith, are groping in the dark.

This is what she wrote today and it details the next treatment to be tried:

To just be blunt, the chemotherapy did not work at all. Instead of having two spots lighting up he now has 4. We have one option left and it was a road we were trying to avoid. Photon Radiation. It is dangerous with many side effects. Even the chance we could lose Braydens personality. I believe with prayer with everyone praying, we can keep those negative things from happening. With prayer we will keep those good cells from being damaged. With prayers we will hopefully get all of this cancer dealt with. I am going to pray that this treatment works and that he will come out the other side, the ornery, funny, little rockstar, we all know and love. Right now he is on a triple dose of steroid, that is always a ton of fun :o). Three weeks after the radiation is done he will start in patient chemotherapy. We were hoping this chemo would work, but I never had a great feeling about the treatment he was on, and this one I feel has a better chance of destroying this cancer. We have to stay positive. We are stronger than cancer will ever be. We love each other all the way to the moon and stars. We are going home this afternoon, there is no point and staying and doing in patient rehab, we need to start radiation as soon as possible. We will get back to doing therapy as well. Brayden went all over the hospital today in a little car, using his legs like a pro. He is tough as nails. I asked him if there was anything he wanted me to tell you all. He said that he likes to play a lot, with cars, and he likes to play guitar, and be a rockstar, and play on the Wii. We cannot wait to get home, this is an even more difficult place to be when you are sad. Every time he has progression it gets harder. I will continue to try and stay positive. We need some prayers to get through this meeting we will have this afternoon with Dr Aguilera. My Mom is here with me, and we are trying to find someone to come and sit with the boys while I go to this meeting at 3 o clock. We love you all. I will update once we are home and after my meeting with Dr Aguilera. 
                                           Love Always,                        Maranda, Brayden, and Mason 

We love you, Brayden!

© 2013 L. Ryan