29 attempts to pick up 1 peanut

I have not been posting because even mine own ennui has become boring.  Not worth a groan, an utter waste of a moan.  An insult to adjectives, a baseball bat to the knees of my home-grown adverbs, really culled from your community gardens, picked wet with dew, the gourd mature yet not so large as to be tough, too seedy, but packaged under my name -- printed on squares of cellophane, attached with high tech red rubber bands.  Eggplant, cucumber, climbing the vine beans, I want them tender.

Surgery has been put off a bit, again, this time until June 18, something to do with giving more time to yet another humeral fracture to heal.  I don't know where they're coming from, these breaks.  Fred doesn't beat me about the upper arms. Marmy Fluffy Butt has stopped gnawing in an ill-advised attempt to strike tuna in my marrow, and terror in my heart.

I think a lot about dying.  That's right:  the height of ennui.  Fred even said, "I feel like I am just sitting in this chair waiting to die."

These are the dangers of days so hot and humid that we lose hope and our buttocks carve our cushy futures into the cheap styrofoam of way past cool paisley wing chairs and roll-about PETA-sanctioned pleather office furniture.

Between now and June 18, I need to have my right hip evaluated.  Maybe it'd be more accurate to say "located," because I swear it's gone off again, road-trippin'.  It was on my list of things to do, right after "everything else." However, it seems that during my ICU psychosis, I went on and on and on about how effing much my hip hurt.  To ShoulderGuy OrthoWizard, no less.  At a recent meeting, he intoned (and intoned is the only verb that works here), "I was very angry with you for not telling me about your hip."

Far be it from me to avoid repetitive testing that will clarify nothing, eat the stray orts of my checking account (influence of NYT Cross Word Omnibus) from among the other detritus seeding my dirt-strewn floors, or just shout out about insanity, frustration, pain, and crap like biofilm infection....

Good news?  The clonazepam is greatly helping quell the spaz attacks.  I am down to about one visit from the automatic shimmies a day.  The cost is worth it -- I feel very sedated.  Word is, though, that I'll adjust.  Even if I don't, even if I sort of slant-smile and fail to blink my way through religious services and medical appointments, that's fine with me.  God, or someone, finally took me seriously -- I cannot tolerate the dystonia, the jerks, the nadir of me.  Thank you, God, or someone.

There have been some supremely funny moments here at The Manor.  The telecommunications installer who couldn't stay because he was allergic to cats, forgot the protective cones to.... protect himself, and failed to bring the necessary equipment as detailed in the work order... which he'd love to go over with us but he was starting to itch and did I have any Benadryl?  The third instance in as many years of a person asking me if I knew their friend X, who was also in a wheelchair.  My 29 attempts to pick up a peanut off the floor using one of my new grabbers.  I mean, seriously, who keeps going after, say, the fifth time?

Oh, and the doctor whose name I did not recognize from his $1300 bill.  Something made me check his licensure status.  License?  What license?  Absolute giggles set in when I noticed that my insurance company paid his claim, in its entirety, without batting a corporate eye.

just a few of the available assistive devices.
29 attempts, people, to pick up a freaking peanut.

I'll try to write more, and better, soon.

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

What a mess...

It's a crazy time.  Given the extent of the wackiness around here, and the opportunity for more, I'll not be blogging for a few days.

Today I see the orthopedic surgeon, my old friend.  (I slept last night with my mp3 player set to repeat and repeat a Michelle Shocked album... "my old friend" is running around my brain to the tune of Anchorage... anchored down in Anchorage....

I took the time to write to my old friend

I walked across the burning bridge

I mailed my letter off to Dallas, but

Her reply came from Anchorage, Alaska

She said Hey girl it's about time you wrote

It's been over two years now my old friend

Take me back to the days of the foreign telegrams

And the all night rock 'n rollin' hey Chel

We was wild then

Yeah, well. So I'll be humming and buzzing along with the x-rays today.

Then we are rushing about Tête de Hergé like freaking maniacs, getting groceries (I am on a goodly dose of antibiotic and we are out of plain, lowfat yogurt.  Also vanilla extract, bread, and milk.  Not to mention caffeine-laced diet colas...) and a few other items of a more esoteric nature.

Then we are flying home to finish disassembling our wing of The Manor, Marlinspike Hall.

Why?  Are we being thrown out onto the streets?  If so, wouldn't The Brotherhood down the road take us in?  Yeah, couldn't we just crash at The Monastery?

No, we're not imminently homeless, we are just having some 16th century reclaimed beams and timbers -- heart of pine planks, specifically -- put in as "new" flooring here in our tiny section of the world. 

And don't knock The Cistercians, even in jest, because they're doing the installation...

What I really wanna know is:  Who bought all these damn books?

I have so much to do and such little space and time to do it in.  Also, I tend to injure myself.  Immediately.  Within five minutes of packing and piling and sorting and moving...  Yesterday, I spent the afternoon with tears rolling down my red, red face,  while putting my arcane collection of Objectivist Poetry into flimsy bags and boxes. 

When I was done, I heard this from My Darling Cohort:  Sweetie Pie?  Are you okay?  Do you need any help?

Wrong!  Well, only partially wrong.  Wrong in the sense that I implied that My Darling Cohort was not assisting.  Because he did.  A lot.  As in, a whole lot. 

Okay, I lied.  His offer to help preceded my headstrong and tearful attempts at packing up my tiny office. 

He's a good boy, is Fred!

The Felines are freaked and part of today's plan entails finding three carriers that we can safely stash them in, as the monks, who love them to pieces, tend to try and sneak them over the orchard wall, tucked in their voluminous robes.  When we retrieve them they reek of incense and garlic.

I have beaucoup medical stuff on tap for Monday and Wednesday of next week, too.  ["Too"?]  The thoughts and worries about the subanesthetic ketamine treatment never really leave my mind.  I am pinning a shitload of hope on this procedure.

So. Be good out there.  Stay warm, stay well, be happy.

The next time I talk at you, I will be able to zip around the place without the wheelchair meeting so much impedence in the form of medieval tapestries and persian rugs.  I'm gonna redefine the speed of light.

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

Okay, so... here I am blogging again, less than a day after swearing off the activity.  I've said it before, and look!  I am saying it again -- I need one of those pensieve thingies, like Albus Dumbledore had stashed in his office.  The basin with swirling, shimmering vapors.  Thoughts as strings to be pulled out of the head, twirled on the end of one's wand.  Though I suppose a chopstick will do, in a pinch.

The Pensieve has multiple functions.


At times, when one's head is so full of thoughts that one cannot hear oneself think, it is useful to be able to take some of those thoughts and literally set them aside. The practiced Wizard can extract a thought from his head and store it in a phial or in the Pensieve for another time. If it is in the Pensieve, it is possible to stir the thoughts stored there together and look for patterns. It appears that the wizard has the choice of extracting an entire memory, leaving no trace of it in his head, as Professor Snape does in Harry Potter and the Order of the Phoenix, or extracting a copy of a memory, retaining the original, as Professor Slughorn does in Harry Potter and the Half-Blood Prince. It is also apparently possible to edit these extracted memories, though it is a difficult task and one which is often not done well.


If one places one's head within the Pensieve, one becomes immersed in a memory that is stored in the Pensieve, and is able to relive it as if one was living that time over again. Harry experienced Professor Dumbledore's memories of the Wizengamot trials of several Death Eaters this way in Harry Potter and the Goblet of Fire, and Professor Snape's memories of Harry's father in Harry Potter and the Order of the Phoenix.


A thought or memory stored in the Pensieve can, with proper stimulus, appear to nearby viewers as if standing on the surface of the basin. Professor Dumbledore used this technique to show Harry the prophecy that had been made about him, in Harry Potter and the Order of the Phoenix, and it is used in Harry Potter and the Half-Blood Prince when full immersion in memory was not needed.


It is also possible to take another person's memories, place them in the Pensieve, and then enter them to relive them as if one were the person whose memories you have just added to the Pensieve. Harry and Professor Dumbledore do this a number of times in Harry Potter and the Half-Blood Prince in order to determine the salient points of the early history of Tom Riddle, or as he later styled himself, Lord Voldemort.

This blog is my pensieve.

So... although we spoke of it briefly the last time I saw him, it sort of blew my mind -- and all its twirling little vapors -- when the surgeon offered up an inverted total shoulder arthroplasty as my sole option for my left shoulder.  He is fabulously talented, so to hear him call something "difficult" was scary.  It looks like this... and this looks WEIRD!

I guess I sorta didn't believe him in October when he first pitched this.  Or I developed amnesia.  The Good Doc says I've not much left to work with -- remember (someone has to), I have rampant avascular necrosis going on as well as osteomyelitis.  Oh, and I am now missing one rotator cuff.

No problem!

He's been such a savior to me, this guy, that I simply don't believe there is a technique or an obstacle that he cannot conquer or overcome.  I mean, he's done... let's see... 8 of my 9 shoulder surgeries. 

We were doing a pre-exam chat -- I was bemoaning the mess at the manor, the monks and the flooring... then the ketamine infusion therapy popped in my head, and consequently, out of my mouth.  But instead of giving him some background, or even notifying him that we were leaving the discursive region of home improvement and religious adherents for the vague regions of dissociative drug therapy, I just blurted:

"Guess what!  I'm gonna do ketamine!"

And his eyes bugged out.
And he opened, then closed his mouth.  Several times.
I could see the confusion and what may have been a burgeoning certainty of my extreme moral turpitude spread across his usually composed visage...

So I explained.

Which made it worse.

He thinks I am nuts for doing this.  Well, ptooey on you, Fabulous Orthopedic Surgeon!  Ptooey, I say, on you!  Then he went on and on about this upside-down, spikey prosthesis -- only an option, of course, if the joint space and long bones are free of infection.

Why am I always so confused?  (No, I am serious.  Why?)  Is there a cumulative but late arriving deficit that hits a person after so many surgeries, after so many foreign bodies are implanted, after nine years of insufficient sleep?  After all the pain, fevers, sweats?  How is it that I can block out such important information?  Denial?  I don't think I am in denial about anything, but then who does?  Do you know that last week, I managed to forget entirely that I have an "aortic root dilation" of growing dimensions -- now sitting right at 5 cm..  I got there because of a run of something or other, that ended in about an hour of trigeminy, and this thought:  "It would be so nice to have a heart rate under 112..." We are so wrapped up in stopping this infection that we haven't even scheduled an echo.  The last one was in ICU back in... July 2009.  Whoa.

Just what I need to indulge in:  more catastrophic thinking!  (Thar she blows!)

See?  I DO need a pensieve -- just to get rid of boring, scary, fruitless thoughts about stuff I cannot do crap about. 

Okay... I feel better.  The reverse shoulder option will only come to be when/if we rid my body of sneaky pathogens and the pain reaches the I-CAN'T-STAND-IT-ANYMORE stage.  With careful coaxing, I can stand a whole hell of a lot!

The title of this post stands unchallenged:  What a mess...

A Good Night [repost]

the last of this series of reposts, each evidence that there is nothing new under the sun, I chose this one over 9,579,323,042 nearly identical others because my beloved sam-i-am is featured in it, asking for "an under." i don't know how he and i devised that whole "under" thing, or, for that matter, any number of other unique communications -- i just know that that was a huge part of sammy's charm and that i miss him. o readers, i am having such a hard time.

and yet? on the food network, this week's iron chef america challenge involves tongue (duck, lamb) and cheek (halibut, beef). tongue tartar, anyone? one of the judges just opined that he was looking forward to "the textures." i can relate. i really can.


i am working on several new posts, and if i can keep from deleting them, they should appear atop these nasty old reposts within the next few days.


tongue and cheek, ew.

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

Lemonade from lemons? Me? Not likely. Still, it being one of those days, I am trying to find some good in it, and am trying to *be* good, which is the considerably taller order.

I was up all of Saturday night from pain, but was very distracted from it by a rocking Australian Open men's final. While part of me feels so bad for Federer, things being, for so long, seemingly equal. Now, though, with this Grand Slam on hard court and Federer being well (he had mono last year), Nadal is clearly the better player. Yes, I know, "on any given day..." As a tennis fan, I am thrilled with this rivalry. I am thrilled by any hard fought five set match. Shoot, I am one of the crayzees that dearly wishes the women could move from best of three to best of five, as well. There should be no issues with conditioning in today's competitive tennis world. Anyway, it has been 21 years since the last five-set Aussie Open final -- Pat Cash versus Mats Wilander. 21 years. Wow.

I dozed through the women's final the night before! P-i-t-i-f-u-l. Something needs to give with the women's draw as the finals, more and more, seem to happen in the quarters and semis! Safina? Why did she even show up? Who wouldn't have preferred seeing Serena Williams and Jelena Jankovic battle it out? It seems like the departure of the Belgian contingent has taken away the magic. As usual, the Russians and Serbs are coming... I just wish they'd hurry up and establish themselves.

Serena's nose must have grown a yard. This is what she said after the match:

"Dinara was hitting the ball so hard that I had to go for broke, that was all I could do to stay in there. Dinara, thank you so much for putting on such a great show for women's tennis." I don't allow "OMG" on my blog... but if I did, this is where I might be tempted. Williams' wins the Hypocrisy Award and I am sure Safina might have picked up on this wee bit of condescension.

My brother the Grader Boob and I are always in close contact during tennis Grand Slams. Some people rely on birthdays, Christmas, those times of year. Not us. He told me last week to expect our Xmas gifts on Wednesday, and that my birthday cadeau might come next year. I wish we could agree to abolish gifts altogether.

I don't know what he is teaching this semester... I will have to wait, probably, until his first professorial meltdown. I always get to hear about those while they are still fresh! For some reason, he thinks I have wisdom to share. Ha.

I wonder how the other Brother-Unit, Tumbleweed, did over the weekend, what with all the betting activity on Super Bowl Sunday. (He's a bookie.) He emailed me that the thing he dreads the most seems to be happening with increasing frequency -- elderly folk trotting up, and saying, "I've never bet on anything before in my life! So how does this work?"

Last night, I spiked quite the temp and between that and lack of sleep, I was fairly miserable. Hot and cold, shivering and sweating, I prayed for some rest. And I got it -- only in hourly spurts and with cats. The Felines were in on it, I swear.

Sammy was chief prosecutor of the war. Marmy took the roll of Head *Ack*er and she seemed to enjoy standing on my chest *ack*-*ack*-*ack*ing away. Occasionally, she hissed -- a new behavior she is trying out. It's effective, garners her attention, but the attention is confused -- we've no clue what she is hissing about and suspect them to be gratuitous. Even the other cats ignore these verbalizations, fairly rolling their eyes in boredom. Should she add claws to the act, that will change, for sure, as she is well known for her deadly accurate slashing ability.

My Little Idiot, the Dobster? He is sent into the fray when I am alert enough to have a Cute Reflex. Dobby is disarmingly precious, and knows it, but as he is a certified Little Idiot, he cannot be obnoxious about it. I hate to be "one of those" pet owners? But? Dobby is perhaps the cutest, most intelligent of all domesticated cats. Ever.

I'm glad to have *that* settled.

The Felines are a wonderful gift from God and a fantastic source of comfort when I am so sick -- and terrific bearers of fun and distraction always.

They are so accustomed to my reclined body that they treat it much like an edifice. There are ports of entry -- they all want to hang out under the quilts and blankets, curl up under my raised knees -- and holy cow this is starting to sound like pet porn...

Anyway -- the concept of asking for "an under" must be understood. While it is true that a cat could burrow under the quilt from any perimeter point, the only correct and point-worthy entryway is over the left shoulder. And they know it. So while they might each half-heartedly attempt a foray via the feet, or under an elbow, they know that the One and Only True Path is along the left clavicle. (I have to stop saying "shoulder." I don't have any freaking shoulders anymore. I may *never*, at this rate, have a shoulder again. I am likely to be forever shoulder-less. Does anyone remember the "ruth-less" episodes of Firesign Theatre? I must keep laughing, I must keep laughing, I must keep laughing -- in between bouts of deep despair.)

Oh, Jesus. How did I get stuck on my woe-is-me again? The cats -- back, *ack*-*ack*, to the cats.

So they have learned what amounts to "knocking" at the door. Sure, they first attempt to get what they want without having to acknowledge B. F. Skinner, but they end up knocking. Sammy is the most endearing at it, I don't know why. He has always been able to project this very shy look and that's the look he adopts -- he drops his head and peers up at me with "big eyes." He waits until I ask, "What do you want?" and then, he takes his paw and taps several times on the ersatz shoulder. He also understands when I say, "I'm sorry, there is no Under under here." At those moments, he changes looks, adopts one that is pretty haughty, turns and stalks away.

The cat knows there is an Under under there and that I am just being petty.

Apparently, last night, The Felines decided that my penchant for sleep was me being petty. yet again. And for the first time, "knocking" knew a new context: waking me up. It's hard to explain the incongruety of my nascent dreams as they attempted to incorporate this physical *thud* *thud* into some sort of cogent storyline. Near nightmares? More like Kitty Cauchemars!

I found a way, ultimately, to make them stop. Surprisingly, it involved kibble. After a feeding frenzy, we all napped until 9:30 am. I started the day off with a temp of 100.6.

It's afternoon now, and I am topping off at 101.3. Not that great of an increase, but this is on top of Tylenol and ibuprofen. And it is all happening despite my daily dose of prednisone. I don't understand the dynamics of it, but most of my doctors will tell me that it is "impossible" for me to have a fever on prednisone. Well, all of this effing impossibility has been going on, almost DAILY, for over 14 months. I am ready for the impossibility of fevers. The banishment of sweats. The disappearance of dehydration. And emotional lability. And INSOMNIA!

The ceiling has probably not yet been met -- as it usually peaks in the late evening.

Most of the day has been spent meeting physical needs, checking tedious things off a tedious list.

Folding clothes, washing clothes, towels, sheets, washing dishes, putting up dishes, a little vacuuming (the price of having three cats), some dinner prep. Plus, I ate an organic apple and a small bowl of kettle popcorn, drank one diet cola and lots of water. Gee whiz, how can I complain about daily tedium?

I am not "supposed" to be doing most of these things... but here at the Manor deep deep in the Tête de Hergé? It's hard to get good help!

I am sure that I don't help my pain levels by vacuuming -- and wheelchair vacuuming is, in a way, more demanding than reg'lar vacuuming. But I assure you, it beats the upset that will happen should I have to see cat hair on my favorite raw silk pillows for one minute more than is necessary. The same goes for dinner -- having a good, healthy dinner with Fred and Bianca beats the heck out of some sad microwaved stuff eaten alone. Besides, Fred's cholesterol is sky high and someone has to counteract frozen pizza and sausage being added to anything edible. I love him. I want him to live forever, and healthily. Vibrantly. Joyfully!

Every fifteen minutes, I stop and rest. Sometimes the rest period lasts 24 hours! Not today, though. Today, I am dedicated to the proposition that Retired Educator can be worn out and, being worn out, sleep.

Where is all that laughter coming from?

The lack of sleep is hell on CRPS/RSD. I have had a severe worsening of it in my right arm, which figures, I suppose, since it seems the infection has returned there. But I also get to reexperience the symptoms that I remember from the very beginnings of the disease -- the shooting, lightening-like electrical impulses to individual toes, for example. They rarely occur when I am not febrile, infected, fatigued. I experienced many more tics and spasms when this tired.

There is a funny side to it -- for when it hits, either the shooting pain or the tic/spasm, I cry out involuntarily, and it is loud -- short, and loud, not unlike a BARK. Fred will roll his eyes but, at least, knows never to ask "What's wrong?" Nothing pisses me off more. I don't know why... it is just that I spend almost all my time fighting pain and part of me feels that he ought to know that -- he ought to know what is going on. Yet, given that I end here, and he begins there, how could he?

In two days, I see the orthopedic surgeon again. The poor man. He did my right shoulder replacement back in 2005, then removed the prosthesis last August -- needing two surgeries to get what he felt to be an acceptably clean field. He removed the left shoulder prosthesis in December... and now is going to have to go back in on the right side to remove what appears to be an infected shoulder spacer. In the interim, suspicious pain has set in in my left hip and lower back. My bloodwork sucks -- but just as in the preceding instances, nothing grows on cultures taken from these regions. Whatever is infecting me remains unknown, despite four aspirations and despite clearly infected samples taken during surgery and before antibiotics. Oh -- antibiotics! After each surgery, I have had 6 weeks of i.v. vancomycin.

As I said, "poor man." He is tops in his field nationwide, and I trust his skills implicitly. That is why I am so scared -- because he cannot forsee how this will end. He told me that he can see us chasing the infection from bone to bone, joint to joint. (Initially, we thought the infections were restricted to all of my orthopedic hardware -- then he discovered it hiding deep in my left humeral shaft... It literally exploded when he began to investigate. So osteomyelitis has been a new term to add to the list. This apparently means something -- I just don't know what.)

If the pathogen, be it bacterial, fungal, or whatever-al, were known, I think he would feel much better. So I don't know -- do we schedule this next surgery as we have the others, in haste, or could I possibly wait a while? I had hoped to be able to really rest and recover in this down time, but that isn't happening. Pain, fever, discomfort, and increasing disability and depression -- THAT is what's happening. Hopefully, and yes, probably, he will lead the way and be able to tell me what is best -- because I am so far down that I am not reasoning all that well. It shows even in my writing in this blog -- I barely recognize myself.

During the writing of this ridiculous post, I am glad to report that Sam-I-Am sought out, and received, permission for An Under. He is currently ensconced under a bright yellow blanket and a lovely, worn quilt -- and under a pair of aching, burning knees. He radiates a warmth that I really don't need but whose message of camradery I do embrace.

The Fredster, for his part, bought a DVD to watch, and some comfort snacks (whose cholesterol content I will have to approve). More importantly, he is willing to hang out with me. Even La Bonne et Belle Bianca has invested herself in the effort.

Good cat. Good partner. Good friends.

And, hopefully, a good night.

"Don't have no gun. Don't have no bullets, neither." [repost]

this is another repost from the same period of time -- the fall of 2008. why am i resubmitting these pieces? am i hoping that the very public shame of not having progressed even one iota of an inch forward in my ways of thinking will somehow so shake me that change will be inevitable (or shame permanent)? perhaps.


but i also think the lesson is simpler than that: what blessings might have been had proper permitting, appropriate ammunition, and heartfelt intent been allowed to coincide?

Last Wednesday, I had my second appointment at the Wound Care Center, and my six-week follow-up with the orthopedic surgeon:

We were 20 minutes late for the wound care. Two highway accidents with rubbernecking at high pitch, and then trouble finding a parking space. I apologized profusely, and meant it. That is, I meant it the first four times the tech deigned to elicit the response. As she began to deign for the fifth and sixth time, however, I felt fairly elicitless.

It was 9 am, and it turned out that I was hypertensive and febrile. (Yes, I was looking for an excuse.) Normally, my blood pressure is alarmingly low -- usually in the realm of 80/50. I have never given it much thought -- but since being told of the issues with my aortic arch, I have sort of cherished my low numbers. And so it was that when told my pressure was 160/110, I fairly laughed in their faces. "No way, no way! I am *always* low... check it again." Five rechecks later? 160/110.

The fever was more of an annoyance than anything else. I am tired of it -- tired of sweating -- tired of feeling *this* close to bursting into tears. Definitely tired of having to tell its story, having to let yet another clueless health care professional try to invent the freaking wheel. Why cannot they simply accede to the truth that it is being tracked, followed, and investigated -- just not by them! Why order bloodwork, why lather at the mouth, why cause me difficulties? Here is a clue: I am *sick* and had to deal with an ill-tempered partner to get here, through hellacious traffic, pain that you cannot imagine. All I want from you is treatment of my ulcered foot -- and, to be perfectly honest, I don't even want that. We are more than capable of taking care of this at home. We are here because of CYA Mentality Medicine.

Oh, if only you could see, and properly appreciate, the sentences that have been typed and then erased between the paragraph above and the next.

Anyway, they changed how we are to dress the cavernous ulcer on my foot (I dropped my laptop on my right foot -- ground zero for my CRPS / RSD -- and the tissue would not absorb the hematoma and extra fluid, so it all burst outward. Yuck. Then would not heal, apparently due to all the extant vascular and nerve damage.). We had used SelectSilver by Milliken for the first week, which drew out an incredible amount of fluid from the foot, and even the lower leg. I kid you not! There were times that the bandage was dripping wet a mere half hour after being applied. Now we will use plain wicking material but must use an ointment called Collagenase Santyl. As it was explained to me, the stuff is akin to a chemical leech. I am gifted with a fair amount of "slough" -- which they swore was a scientific term for the material that normally would be absorbed by the body. Detritus. Junk. Goo. Ick. It is supposedly "smart," in that it will chow down on necrotic tissues but leave untouched the healthy stuff.

The tech took her sweet time, dragging out the minutes, until I had but four of them to get across the street to the orthopod's office. Revenge?

Fred had gone to bed at 3 am; I got up at 3 am. We are, at times, ships passing in the night. And so we were basically Stupid Squared as we sat in the next waiting room.

I have to say, dear blog, that I came away from my meeting with my world-reknowned surgeon quite perturbed.

We verbally ran through all that happened with the two surgeries and what he thinks the future will hold for the right side of my body. I almost hated to tell him what his PA already knew -- that I am having fevers again, that there is now severe pain and restriction of movement in my *left* shoulder. And my white count is again hovering between 11.5 and 13,000.

He says what good luck it is that there is no metal on that side, no prosthesis to deal with.

I stared at him. "There *is* a prosthesis on that side," I tell him. His mouth falls open. "But I didn't do it," he counters, with unassailable logic. "True," I say, "but Dr. Do-DoHead did..."

It boggles my mind that he did not know there were more prostheses. Why do I fill out all the pre-op paperwork, get those pre-op clearances?

He thinks I have abscesses on that side.

He put his head in his hands.

My what an uncomplicated course I am looking at. A bad ulcer to heal -- now that I have this sucky history of hospital acquired MRSA. A long recovery after having one shoulder prosthesis removed due to massive infection. Apparent infection on the opposite side. A promised surgery to implant a new prosthesis... once all of these other things are cleared up. He was mumbling by then. He never looked me in the eye.

The daily pain of CRPS / RSD in all limbs and the lower half of my face. The pain and disability of avascular necrosis in all major joints. Juggling adrenal insufficiency. The ins-and-outs of SLE.

Depression, deepening. Isolation, deepening. Despair? Admitted to only here. Just between you and me.

I am dizzy. I am sad. I am mad. I am crying, again.

160/110. 100.7 (not supposed to be possible on steroids...). My heart rate stays in triple digits.

I feel like quitting. Like shooting myself in the head, say. Here I am, just as I was back in early August, and then as I was last October, November -- dripping wet with sweat, burning up, shivering, a sick insomniac with a wicked headache and out-of-this-world pain.

I just asked Fred if he would shoot me.

His reply? "Don't have no gun. Don't have no bullets, neither."

sometimes i rise above

I am struggling to climb the next rung of what, for lack of a better term, I call my challenge ladder.

Many years ago, during that time when I somehow managed a heavy courseload, worked 40-hours in a weekend, and maintained a fanatic interest in tennis -- oh, yes, and when I was quite busy dealing with an ex-boyfriend turned stalker -- I discovered and put into frequent practice some basic biofeedback techniques to fight the stress of exams, lack of sleep, and being held off the floor, against the wall, by a hand around my neck.

Success is a mighty antedote for stress and worry.  During the period when I ruled the Literary and Academic world with an iron hand in a velveteen glove, being overwrought with nervous energy was something of a boon, and certainly to be expected when living on Diet Coke and Gitanes Brunes. 

Okay, so my rise up the Ivory Tower might actually more resemble the route taken by Window Washers and professional Masonry Weeders.

But the part about the Diet Coke and the Gitanes is true.

I rediscovered and returned to relaxation techniques when I left hoity-toity academia for the urban trenches of educational warfare:  high school teaching.  At the time, we also volunteered many hours a week at a homeless shelter for elderly, disabled, and actively ill men.  There was a lot of slow, deep breathing going on, let me tell you!

When did these tools morph into a ladder, a challenge ladder?  Precisely when I realized that certain situations, if not all, depended on my ability to transcend my circumstances and, almost literally, to rise above them. 

"To rise" is an inadequate verb.  "To scramble in a generally positive, vertical direction, spewing caramel-colored cola and spitting scraps of nicotine hay" -- that is the more apt verbal expression.

I dreamed the ladder up.

In preparation for a transesophageal echocardiogram, a nurse began spraying my throat with a topical analgesic called Cetacaine.  My throat promptly swelled up, and about a minute later, I coded.  Somewhere in my head, I could hear the stylings of Seinfeld's Soup Nazi, trapped in the wrong episode, yelling "No echo for you!"

The couple of hours I spent circling the drain were marked by brief excursions into consciousness and the subsequent awareness of pain.  Extreme pain.  It hurt bad enough that I preferred being comatose to the option of fully-sentient existence.

And yet, even then, I grew tired of myself.

"Self," said I, "We're in quite a pickle,* a real jam."

I don't know why so much pain set in following this incident.  There was no reason for such a worsening, no reasoning, either, that I should face such a reckoning.'

In my mind, the fog of confusion began to clear.  I saw myself -- no, that is not right.

Before I saw anything, I felt.  I felt a pleasant warmth on my face and arms, felt a soft breeze. 

I heard the breeze, too, and that through which it blew, the leaves, mostly, rustling, rustling. 

I was on a tall ladder that was leaning against the second story of a three-story house, a well-kept wooden home, painted a cheerful yellow with white trim.  The sun was shining, but gently.  I don't recall ever breathing such pure air -- better even than beach air, with its hints of sea bird and salt.

Were I concise and reductive in nature, I would say I experienced an incredible sense of well being.

There was no cogent sense of time in this illusion I was hosting, but after a while, the pain in my legs, hips, and shoulders reasserted itself, the sun slid behind clouds, the breeze turned stale.

Clearly, I needed to climb higher on the ladder.  That looks like a patch of sunlight up there, and over there, there is almost a shimmer to the air...

I "remembered" how once I marshalled my resources to survive a lover's grip, an examiner's query, a student's quarrel.  I remembered being the real eye of an imaginary hurricane. 

My feet found the next rung, tested it, my hands reached for the warmth of yellow, and I climbed the ladder from pain into no-pain, my chest fairly bursting with the effort to breathe right, breathe slow, measured.

[Do you remember when you first understood the how and why of Prufrock, who "measured out [his] life with coffee spoons"?]

I never said a mumblin' word to Fred, to the doctors or the nurses, never divulged even the existence of my clapboard house, held cupped in the bottom of a balsam-scented valley, never shared the function of my rickety, trusted ladder.

Unfortunately, I visited often.  The owners have added a few stories -- the ladder, likewise, has magically grown extensions.

Every time that I get a weepy, sad-faced doctor, every time I hear "there is nothing more blahblahblah..."?  Sure, I sink deep into the blues, and sometimes for an embarrassing length of time, but then, one day, twisted from no sleep, unable to stand, dropping coffee cups left and right...

I feel the breeze tease my face, smell the pine...and I climb.

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

*The earliest pickles were spicy sauces made to accompany meat dishes. Later, in the 16th century, the name pickle was also given to a mixture of spiced, salted vinegar that was used as a preservative. The word comes from the Dutch or Low German pekel, with the meaning of 'something piquant'. Later still, in the 17th century, the vegetables that were preserved, for example cucumbers and gherkins, also came to be called pickles.

The 'in trouble' meaning of 'in a pickle' was an allusion to being as disoriented and mixed up as the stewed vegetables that made up pickles. This was partway to being a literal allusion, as fanciful stories of the day related to hapless people who found themselves on the menu. The earliest known use of pickle in English contains such an citation. The Morte Arthure, circa 1440, relates the gory imagined ingredients of King Arthur's diet:

He soupes all this sesoun with seuen knaue childre, Choppid in a chargour of chalke-whytt syluer, With pekill & powdyre of precious spycez.
[He dines all season on seven rascal children, chopped, in a bowl of white silver, with pickle and precious spices]

The figurative version of the phrase, meaning simply 'in a fix' or, in the almost identical 19th century phrase 'in a stew', arrives during the next century. Thomas Tusser's Five Hundreth Pointes of Good Husbandrie, 1573, contains this useful advice:

Reape barlie with sickle, that lies in ill pickle.

Presumably, barley that wasn't in ill pickle, i.e. the corn that was standing up straight, would be cut with the larger and more efficient scythe.

There are a few references to ill pickles and this pickle etc. in print in the late 16th century, and Shakespeare was one of the first to use in a pickle, in The Tempest, 1610:

ALONSO:
And Trinculo is reeling ripe: where should they
Find this grand liquor that hath gilded 'em?
How camest thou in this pickle?

TRINCULO:
I have been in such a pickle since I
saw you last that, I fear me, will never out of
my bones: I shall not fear fly-blowing.

A return to the more literal interpretation of the phrase came about in the late 1700s. The Duke of Rutland had toured Britain and wrote up his experiences in a travelogue - Journal of a Tour to the Northern Parts of Great Britain, 1796. He was present at the disinterment of the 350 year-old body of Thomas Beaufort, which he claimed to have been pickled and 'as perfect as when living':

The corpse was done up in a pickle, and the face wrapped up in a sear cloth.

Just nine years later the most celebrated personage ever to have been literally in a pickle - Admiral Horatio Nelson, met his end, although some pedants might argue that, being preserved in brandy, he found himself in more of a liquor than a pickle.

suicide by doctors

okay, so in the few hours since i published this scintillating example of self-pity, guilt at having bad-mouthed the good people who are trying hard to help me, and who are as talented as they come, has gnawed a hole in my inflated psyche.  and i thought the pain of rotting bones and insane nerve fibers was hard to deal with -- well, that pain is nothing compared with guilt.

so... i'm sorry, okay?  it's just that every now and then i decompensate.

[which would be a reason but not an excuse.  jeez, but you people are rough on a girl.]

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

i'm taking another mini-break from blogging, although experience tells me that merely making that announcement is a surefire way to recapture my own flagging interest.

the visit to the surgeon yesterday was good, in that i like him and he tends to get the various balls rolling. the visit was bad, in that so much remains... hors la portée. 

we cannot rule out infection of the left prosthesis but we now have another very evident reason for some of the pain and dysfunction, at least.  there is supposed to be a subacromial space in the shoulder, a gap in the joint, that is generally of around 9 or 10 cm. 

below 6 cm of space, it's considered a problem.

i am in the negative -- i have no space.  i have negative space.  were the prosthesis not there -- and there with such élan! for it is there, and jauntily! -- were that hunk o'metal absent, it'd be just another one of my collapsed joints.  i am too familiar with the concept of collapsed joints and rotting bones -- with all their translations into krapola and ouch -- thanks to years of avascular necrosis.  there is also the odd klunk of bones trying to settle into some acceptable version of order and boniness (that'd be the weird audio component of AVN:  the sound of joints settling.  disconcerting, this sound.)

the quote i love so much is burrowing through my very depressed mind.  next, then, the traditional moment with spinoza:

each thing, in so far as it is in itself, endeavors to persist in its own being.

i would rather hear and know this than all the promises of heaven and salvation.  sometimes, don't you just want the truth?  unvarnished, prickly?  capable of collapse, were it bones?

oh, hell, the important distinctions, the big ass caveat:  the endeavor is NOT what has been called the [evolutionary] struggle for existence, no way, jose!  it is simpler -- and harder -- than that:

it is the result of a thing being what it is

[from translator r.h.m. elwes' 1883 "introduction," to the ethics].

a translator who likes to nail things down, elwes also adds:

When it is spoken of in reference to the human mind only, it is equivalent to the will; in reference to the whole man, it may be called appetite.

there.  now spinoza and his scrappy translator grace the page.  i can relax. 

or i can persevere and persist in my (own) being.  how about it? wanna join me?

okay, so we have the squirrelly case of the disappearing rotator cuff muscles, which, being trapped between pitiful bones were nonetheless dispatched, disappeared, and definitively poofed away, away!

he gave me a cortisone injection, which helped for about an hour, thanks not to the steroids but to the hefty dose of anesthetic involved.  knowing how i feel about such injections, he gave rapid lip service to the benefit/risk ratio.  bless the man.  he may be the only one on the ball... and since he's the one with all the scalpels, that's a good thing.

no word had been passed to him by either my go-to-guy or the new infectious disease dood.  the three of them all chatted today, however, and i have been sending emails back and forth to go-to-guy.  new ID dood opines, as did the consult we got last august, that if there is a bacterial bad boy, he votes for propionibacterium acnes, based on the deep reasoning that -- now, follow along: 

since nothing has grown,

the culprit must be

difficult to grow,

and the most difficult bacterium to hatch,

 in terms of joint contaminants,

is p. acnes,

so it must be p. acnes

that is not growing.

sigh.

i feel like i am surrounded by idiots.

that is a dangerous thing to say, the kind of thing that can get a person condemned to hell, or that can at least give you a terrible reputation and keep you out of the country club.

so go-to-guy has come up with what feels novel to him [because he has completely forgotten about the lame ass consult of last summer, the one where fred and i traversed the wilds of tête de hergé (très décédé, d'ailleurs) aboard a convivial ruby, the honda crv, only to spend a total of 7 minutes with the illustrious doctor man.  illustrious doctor man hemmed and hawed (but not much -- i mean, it took all of 7 minutes... that's including the disrobing, the exam, the review of records, the documentation -- in fact, he had it all written up already, he had already concluded, the book was déjà closed.  "i took the liberty of speaking with your surgeon, who is known to me...."  sigh. dickwad.  and that was the genesis of the propionibacterium acnes element of our folklore.] --

whoa, nellie!  if i were you, gentle reader?  i would bale out of that paragraph!  [whether you are to BAIL or BALE out is but another conundrum] what a mess! 

anyway, back to go-to-guy, who is doing an admirable job of ignoring every reference i make to impending suicide.  he wants to do a course of doxycycline.  a course, that is, of ORAL doxycycline.  i think the poor boy is confusing a bad case of zits (a shout out to my former friends at PTZ!) with the lingering, well-hid pestilence known as osteomyelitis.  but whatever floats his boat and more power to him for deigning to do anything!  something, anything!  i came * this close to quizzing him about the types of barriers that would have to be traversed, etcetera but, thankfully, i managed to be a teeny bit decorous.

my crp is so high no one will tell me what it is.  that bugs the good bejesus out of me.  i can pass along all the other lab values... but the crp is gonna... what?  make me faint?

i am being referred to one of shoulder man's colleagues, the hipster, because my right hip is refractured.

the easiest solution of all, in terms of diagnostic testing, would be one fucker of an mri.  and that won't happen because of the incredible number of implants, screws, and such that cause the images to torque to high heaven.

shoulder man introduced the idea of a reverse shoulder replacement, a funky little design that is exactly what it sounds like:

it would be a last resort, this slicing off of the humeral head!  but his little blue shoulder man eyes, they were

a-gleamin'!  with the disappearing rotator cuff, the collapse of the joint, this is what remains as a surgical option.

of course, we must be reasonable.   especially since the foremost contraindication is the same as the foremost complication.   

why, yes!  that would be infection.  {as god falls into the groaning maw of his own smart-assedness.}

so this all has me beyond blue.  they want me to renew my relationship with the medical school rheumatology department, try the antibiotic (orally, orally!), and open my mind to a reverse replacement.

maybe i won't take a hiatus from blogging. 

i fear the implosion of everything, and sometimes it is only the writing that successfully squares off with the sucking abyss...

and tames my natural tendency toward dramatic excess -- rare though it may be.

jeez, louise, but i am tired.

the one where i wallow in it

i am way likely to delete this post when rational thought makes a reappearance; on the other hand, my growing, playful, and just darned whimsy-laden devil-may-care attitude might also win out, in which case i will likely shrug and deny everything.

of course, to shrug implies the possession of shoulders, and as i continue courting the opinions of every medic within a 150 mile radius of the Lone Alp smack-dab in the middle of Tête de Hergé (très décédé, d'ailleurs), the more i am convinced that The Shrug will not figure in my repertoire much longer.


--Opus for Shoulders (5 minutes) by Ruth Eshel.
Performed by Beta Dance Troupe from Haifa, Israel.

today, the fredster and i boogied over to the pain management people.  okay, so i am trying to sound important.  you know, like i actually have "pain management people."  what i *do* have is a wunnerful::wunnerful physician assistant with whom i meet monthly and discuss dogs, cats, ex-fiancés, life partners, the private lives of doctors, fred, the beach, the wunnerful::wunnerful-ness of being a bitch, sarcasm and sarcasm's failures, grandmas, the nature of pain, wii, and, occasionally, the pain of crps, avn, and the completely ape shit nutzoid condition of my infected and defective bones.

that's a lot to cover in just a little bit of time.  amazingly, she also manages to finesse the pharmaceutical management of my pain so that i exit their office with between four to six prescriptions, of which i usually fill two.

i consider her a friend, as she sometimes lets me weep, and does me the enormous favor of just letting me be.

it has been only in the last few months, though, that i've pumped her for insider information on The Shoulder Situation & Escapade.  see, she used to work for the brother of my orthopedic surgeon, as well as once having a position on the ortho floor (that'd be the fifth -- i know it well...) of his preferred hearsepital. oh, and i have deduced a quickie of a romantic relationship with my surgeon's PA.  it's a veritable hornet's nest of interwoven nonsense.

the short version of our october meeting can be read in my swollen red eyes, and this well-worn, well-loved quilt, completed by the memory of sammy nuggled in it to best share his warm commiseration.  i am admonished to take my pain medicines as ordered.  my vainglory is ridiculed, my legs, my arms, my face.

an antique kaleidoscope of broken bits of largely red glass.


--Opus for Shoulders 2 by Ruth Eshel.
Music: Deganit Elyakim. Costumes: Noga Weiss.

i watched fred -- in profile -- as he drove us home -- and knew as well as i know anything these days that i just cannot inflict much more of this on him.

or his beautiful profile.

the one where i break my leg...

hi there, sports fans! as usual, you will just have to trust that i have scintillating posts in the works for My Dear Readers.

in fact, on my list of sixteen things to do this week, item number sixteen reads: "kindly finish the two scintillating blog posts that you have on deck" -- {that'd be the requisite sporting terminology}.

la bonne et belle bianca castafiore is driving me and fred nigh unto insanity due to her obsession with all things "Jeux-O." last night, we caught her chatting online claiming to be québécoise, d'une vieille famille acadienne. she is a riot, though, when she affects the accent, when she really puts her prodigious nose into it.

plus, it is fashion week here at Marlinspike Hall, just as it is in the greater world of haute couture. for The Castafiore, though, its purpose serves a greater urgency, that of preparing her outfits for March Madness and College Basketball viewing. sports and fashion go hand-in-hand.

[you may recall "The ACC Semis," from last March:

"La Bonne et Belle Bianca Castafiore is decked out in a bold, strapless, beaded animal print (specifically, leopard), her considerable self poured into the sweetheart neckline whose décolletage is set off by rhinestones, the fitted silhouette amply accenting her curves, the mid-thigh slit in the front allowing the bright orange lining to flash like a stroboscopic lamp. She is plopped next to me on the bed, rounding out her come hither look with a pair of orthopedic alpaca fuzzy slippers.

During the first semi-final, she kept up a steady effff-ah you! effff-ah you! -- despite my efforts to turn that into the more accurate chant of FSU! FSU! Eventually, The Castafiore burst out of the lace-up corset that constituted the back of that safari prom dress. She's been pretty quiet since."]


you sweet folks deserve an explanation for the dearth of original posting here at elle est belle la seine la seine elle est belle. lacking that, here is what i ranted just a bit ago to some acquaintances at my favored fetish site:

good morning! i am frustrated. that's the extent of the rant, really.

oh, why am i frustrated?

in a previous rant, i explained that i have crps in all 4 limbs + the lower part of my face -- i also have severe avascular necrosis pretty much everwhere thanks to years of steroids for lupus -- plus there is that pesky osteomyelitis in my shoulders (and probably one knee, too). are you up to speed? basically, my bones suck. sometimes they rot. sometimes they fester. and... very often! they break.

i fractured my tibia saturday morning. it was a brilliant moment. i am wheelchair bound (sniff, sniff) -- it's a power chair because i cannot use my shoulders, i mean, my fake shoulders, to self-propel. i was already doing what i am not supposed to do --i was rotating our mattress.

now, i keep the thermostat very low -- as in 58 degrees. so we don sweatshirts and sweaters and are just generally swathed in layers of fabric. i try to keep the various sleeves carefully rolled up, so as to avoid accidents.

what kind of accidents? ohhhhh, the kind where your sleeve catches on the "joystick" of your power chair and drives you willy-nilly at high speed into the METAL bedframe. not possessing intelligence, the chair continues to push, push, push until the idiot driver manages to smash the OFF button in between screams.

i love the various sounds of the erupting zit: schlurp! pa-pa-pop-splat!

i HATE the sound of a bone breaking: ccccc-r-aaaa-ccccc-k.

given that it was, of course, my right leg, the one my doctor suggested amputating back in november (?), the increase in pain is practically meaningless. going from a steady pain score of 8/10 to 9/10 just doesn't mean crap, y'know? i mean, what am i going to do, take more pain medication? i don't think so.

before crps, when my bones broke, i'd surround the offending skeleton with ice. after crps, ice is contraindicated.

so we sat around and watched it swell and change colors. more fun than a movie and popcorn.

and we discussed how annoying it was that my health insurance is no more. yes, i called the medic and my doc wanted it splinted right away. i knew he was going to say that, so we had already launched an expedition into our Orthopedic Supply Closet, crammed full of boots, splints (cloth and metal as well as air), velcro, exercise bands, a collection of walkers, canes, and wheelchair batteries. thanks to dislike of organization, there were also bedpans, tennis rackets, gallons of biofreeze and betadine, bendy shoelaces (back in the day, i used to wear shoes), and a few embarrassing romance novels.

my leg, though, had decided to swell quickly, too fast for the application of a splint.

PRAISE THE LORD, because if i cannot wear a sock on my feet due to pain? i surely can no longer tolerate the pressure, touch, and weight of a booted splint.

so, no weight-bearing is the rule, also the joke, as i cannot abuse that left leg either, and cannot use any type of crutch -- for those exciting trips of 15-20 feet to get from bed or chair to the bathroom.

whew. okay, thanks, y'all. i feel better. everytime i think, "oh, fuck, i *cannot* do this..."? it works itself out. not to say that i don't sometimes look forward to the day when i truly will give up! no time soon, no time soon.

wow, heavy-duty self-pity.

the good news is that having vented, i do indeed feel better.

news that you may or may not consider "good," i think i have it in me to write again. the problem is finishing. getting it to the point where it won't be a total embarrassment if viewed by others.

you dig?

Extreme Unction: Last Rites of the Insured

Here we go, Gentle Readers, setting out on our first LIVE blogging event!

The occasion? If you will direct your eyes to the upper left corner of the page, you'll see a countdown clock, ticking away the seconds until I join the ranks of The Uninsured. See it?

As I write this, it reads: 1 day, 12 hours, 51 minutes, 35 seconds. 34, 33...

And so, down to the wire, with my sour stomach in a knot, I am getting ready to submit for refill as many prescriptions as I can -- because at the moment, I am covered at 100% for medications. That'll drop to zero in 1 day, 12 hours, 48 minutes, and 51 seconds. 50, 49...

Yes, right *now*, I am fulling covered for everything from hospitalization, tests, and office visits to durable medical goods (I'm tempted to try and get a new wheelchair while I can... but don't worry, I won't).

"How wonderful for you!" you may be thinking. Good thing you're not actually here. I might have to hurt you. I might have to explain that in order to reach this level of coverage, I had to bleed many, many dollars -- an amount far beyond what I can actually afford, such that now (1 day, 12 hours, 42 minutes, 6 seconds to go! 5, 4...) I am up the creek without insurance.

The pharmacy I use for all medications except the strong painkillers I take is only a few blocks away, part of a large national grocery chain. The drugs for pain I fill, monthly, in the pharmacy housed in the same building as my pain management doctor, so that the pharmacist knows me or can easily doublecheck my legitimacy. I fully understand -- dispensing methadone and endocet is serious business. I saw the pain doctor last week -- or rather, I saw the PA, who is infinitely more on the ball than he is. She, at least, knows how to keep a small measure of hope alive. Whereas he makes a Pointed Point of telling me, whenever he sees me, that there is nothing more to try in my fight against the pain, primarily from CRPS/RSD and collapsing joints -- except for pharmaceuticals. His average time with me is under two minutes, and given that this includes that Pep Talk? Well, it really is a freaking shot in the arm to talk to that... man. His PA, though, shares information from the conferences she attends, tells me of things other CRPS patients are trying, and tries to resuscitate my flagging faith in the medical arts. Through her efforts, I believe I am taking the appropriate amount of narcotics; When he was running my show, I was overmedicated. I would rather hurt, which I surely do, than be befuddled and vacant. It is a fine line and I am happy to have her help me walk it.

I didn't tell her I was losing my insurance coverage. I sat there, chatting away and panicky inside because I knew time was running out. The way this physician operates, you must make a $195 office visit every month in order to receive pharmaceutical pain management. He is a physiatrist -- a specialty foreign to most people. In fact, most times, when I write "physiatry," I receive kind corrections from people who explain that the correct spelling is "psychiatry." I don't mind. I understand how they might make that assumption! A physiatrist is a doctor specializing in rehabilitation:

Rehabilitation physicians are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move. Rehabilitation physicians have completed training in the medical specialty physical medicine and rehabilitation (PM&R).

In other words, my doctor resents like hell being asked by my s.u.p.e.r.b primary care physician to write monthly prescriptions for pain medications. He does not like to treat patients solely with drugs. It's confusing, sometimes, his attitude --which is fairly legible upon his face. He is so resolute about there not being anything else to try -- when common sense might dictate that he would be first in line in favor of alternative, and more permanent, measures.

In fact, he and one of his partners proved to be the roadblock preventing me from getting a Spinal Cord Stimulator or an Intrathecal Pain Pump -- both things that might afford me real relief. And now, of course, as it has turned out -- there is not a surgeon in the world who would agree to implant another foreign body. Until the source of this osteomyelitis is found, it is too risky. Even then, since I am now severely immunosuppressed -- well, blah. And bleck, too.

Now, of course, I have no choice but to tell him and the PA that I'll be paying out-of-pocket. I am scared he will say that he won't negotiate with me -- neither about price nor about frequency of visits. Perhaps he will seize this as an opportunity to finally dump me as a patient altogether.

Sometimes I wish I felt secure enough to tell him how I never take as much pain medication as I am "supposed" to... how I force myself to take drug holidays every few weeks... but I don't think his reaction would be positive.

1 day, 11 hours, 52 minutes, 39 seconds. 38, 37...

Well, there is no putting it off, this list of medication refills. The pharmacy I'm using allows for submission of refills via the internet, so I'm just clicking from this window to another to finally be done with this.

Since the latest Wordle Contest has been such a bust, maybe I should start a "Guess the Grand Total" Competition. The closest to the actual cost paid by BCBS gets The Castafiore for a day! It matters to me, the total, even when they pick up the final tab -- because I pay upfront, and then am reimbursed. I've never had too many problems with them refunding my money (in about 3 weeks or so) but, at the moment? I would not be surprised by anything that bleeping insurance company does...

It can be scary to put all of these things on a credit card every month, trusting that a refund will arrive in a timely fashion. For what it is worth, I pay my credit card balances in full each month. At least, that was my habit.

Here's the list, in no particular order. Last week, methadone and endocet were filled at a cost of $106.28 (remember, too, that these are the negotiated prices).

Prednisone (generic)
Hydrocortisone (generic)
Plaquenil (hydroxychloroquine, generic)
Lumigan
Nexium
Starlix
Glimepiride (generic)
Baclofen
Tizanidine
Amitriptyline (elavil, generic)
Alendronate sodium (fosamax, generic)*
Cymbalta
Lasix (furosemide, generic)
Zofran (ondansetron, generic)
Diabetic testing supplies**

PLUS -- I'll be calling my trusty pharmacist to see if I have any antibiotics with refills, just to have some on hand in case Infectious Disease Dood wants to give any another try.

*I'm filling this instead of Forteo. I mean, scope out how much that costs! I am afraid to charge it this final go 'round, because several times already, BCBS and my doctor have come close to brawling over it. I'll tell you a secret. Shhhh! We are. No, we were giving this daily injectable a shot (sorry) in the hopes that my poor disappearing, "avascular," and infected bones might be reincarnated. I do have severe osteoporosis, but it is as a function of osteomyelitis, severe AVN, and CRPS. If my s.u.p.e.r.b primary care physician had his way, I'd take both Fosamax and Forteo.

**Actually, I may pass on these. I am not technically diabetic. However, due to the combination of steroids and infection, my blood sugars have been too high. I know any doctors and diabetics out there are likely to curse me -- but I prefer not to do a lot of testing. The results don't influence what I do and I think the hemoglobin A1C is superior to my dripping blood all over the damned place. As I lose fine function in my hands? Diabetic testing is not so easy anymore.

There's been quite a lag in between the last paragraph and this one. I'm starting the daily afternoon climb of Febrile Mountain, and that, combined with pure anxiety, has left me acting much like someone hopped up on speed. I've dealt with paying the mortgage, VISA, the electric and gas bills, as well as the phone and internet.

I had a brief internal debate as to whether or not internet service should continue to be a necessity, or whether it was a luxury I cannot afford. The decision -- to keep it -- was based on its capacity to entertain and distract me, lessening the need for breakthrough pain medication. Does that sound strange to you? Hmm. It probably does! Makes perfect sense to moi. Also involved in that decision is the fact that The Fredster, La Bonne et Belle Bianca Castafiore, and
-- though she doesn't think I know -- Marmy, all rely on the internet as well.

I may start passing the hat, though! Uncle Kitty Big Balls is in charge of Feline Accounts Receivable and has hissed in my general direction that some "accomodation" might be possible.

Anyway... so I've been wasting time, trying not to deal with this Final Rite of the Insured. Did you know that "Anointing of the Sick" has replaced "Extreme Unction"?

1 day, 10 hours, 46 minutes, 58 seconds... going, going, gone.

photo credit -- f 128 Simple, Strange, Roots Photography

Geoffe Haney is a photographer that holds a BFA in with a concentration in photography. He enjoys alternative process to make his images. He utilizes digital, pinhole, Polaroid and other methods to create the perfect image to his eye...

Prints are available in limited editions. If you are interested...He can be contacted by writing to geoffe@gmail.com