more reasons to hang on to a good doctor

i've been meaning to write but things have been extraordinarily rough.  this morning, i forced myself to take care of some business, financial, medical, and the spots on the kitchen floor.  that kind of thing.

also, chasing one buddy the freakishly large kitten who had what we politely call a "cling-on," a game that he found hilarious, but which induced need of a nap in me.  the expedition was a success, i am glad to say, and buddy is now allowed back on the bed...  where his twitching, dreaming self suggests that he is reliving the fun of ridding his derrrière of stray matter.  his huge paws are twitching...

there have been many mentions in this blog of my MDVIP go-to-guy.  at my most destitute, i came up with the money to keep him as the center of my medical "team." he's just that good.  you can read about MDVIP HERE.  i cannot vouch for anyone save my guy, of course.  there are some things about the system that i still don't understand, but that's about average for me, and probably won't be an issue for smarty-panted old you, dear reader.

but i ask you, how many of you have doctors that would field an email such as this one, that i just fired off?  he's told me that he lacks time for extra research into biofilm infections and -- like everyone -- is stymied by my extensive CRPS.  that said, he's asked me to forward to him references and my "takes" on journal articles that my astute judgment deem possible sources of actual action.

gracious?  the man is gracious -- even if it is mostly the epitome of a polite and sympathetic blow-off.

this morning's email:

need order for annual echo + med adjustment + consideration for more medication adventures

profderien@gmail.com	2:15 PM (18 minutes ago)
to X, X  bcc: me

hi,

since insurance is at 100% coverage, i thought i would try to knock off any annual testing before the end of 2012.

• the most important thing to me is the annual echo. i called dr. w's office and they require dr. MDVIP's referral/order.  would you please ask them to call me to schedule the appointment? 

i also just pre-ordered most of my meds for the rest of the year, some rx have expired or need renewal, so i apologize in advance for the flurry of faxes that will be coming your way.  

• through experimentation, i've come to believe that taking two 200 mg generic plaquenil helps with bone pain better than just one.  if it is okay with you (and please pardon the experimentation), could the rx be changed to that dose amount?  i have never tried MORE than 400/day... ?  anyway, this is the rx# atmedco.com.  if you want me to stick to 200 mg/day, i surely will, in which case no changes are required at medco.  Hydroxychloroquine Sulfate Tabs 200MG  Rx# X

things are pretty miserable around here, mostly due to pain, spasm, fever, sweats, no sleep or too much -- otherwise known as "the usual"!  

• before the end of the year, i'd like to have my blood rechecked, if that makes sense, including sed rate and c-reactive protein.  i won't be returning to infectious disease dood who usually does the blood work as a matter of course.  would/could you order through quest, as there is one near our manor.

a piece of confidential health care cost gossip?  infectious disease dood's office has garnered over $275,000 since JANUARY.  can you say "wretched excess"? i know the drugs are expensive... but, please...

i am trying to do the groundwork on biofilm infections but have trouble concentrating and most of the info stresses the wonders of prevention, and the best ways to identify bugs from implanted devices (once removed) -- which is all irritating to someone who is on the other side of the thing.

• i am very interested in trying "drugs that work through TNF-alpha blockade" -- as there are many abstracts out there pushing for more studies of these biologics in CRPS -- going after the inflammation, i guess.  i am ready to skip the studies and go right to giving something an "off-label" try.  or maybe something like enbrel/remicade/humira wouldn't even need to be "off-label"?  how's about thalidomide?  i am wondering if my insurance would be suitably impressed just by a history of my c-reactive protein scores as justification... that'd knock their insurance socks off!
• i am also wondering if it is worth restarting "bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate" -- which we stopped because i had been on them so long. i've been off of them for well over a year now.  if yes, and they're all pretty much the same, my preference is for the cheapest! i'm doing my best not to bankrupt the country, though clearly, it is too late.
• if we scratch off methadone and ketamine, there are still some NMDA receptor antagonists i haven't ingested, namely amantadine, memantine, dextromethorphan (did you suggest this to me once?).  the discussions (anecdotal patient message boards) i've seen for dextromethorphan have a huge range of doses, but all recommend "compounded" versions rather than OTC which has alcohol in it.  amantadine seems to be used for neuropathic pain pretty frequently...  memantine's best study included a huge cohort of three patients, so i dunno... you gotta love the investment big pharma is making into CRPS.

Clin J Pain. 2006 Jun;22(5):425-9.

Pharmacologic management of complex regional pain syndrome.

Rowbotham MC.

UCSF Pain Clinical Research Center, Departments of Neurology and Anesthesia, University of California, San Francisco, School of Medicine, USA. mcrwind@itsa.ucsf.edu

Few randomized controlled trials of oral pharmacotherapy have been performed in patients with complex regional pain syndrome (CRPS). The prevalence of CRPS is uncertain. Severe and advanced cases of CRPS are easily recognized but difficult to treat and constitute a minority compared with those who meet minimum criteria for the diagnosis. Unsettled disability or liability claims limit pharmaceutical industry interest in the disorder. Many studies are small or anecdotal, or are reported on only via posters at meetings. Targeting the process of bone resorption with bisphosphonate-type compounds such as calcitonin, clodronate, and alendronate has shown efficacy in three published randomized controlled trials. Intravenous phentolamine has been studied both alone and in comparison to intravenous regional blockade or stellate ganglion block. Steroids continue to be administered by multiple routes without large-scale placebo-controlled trials. Topical medications have received little attention. There has been considerable interest in the use of thalidomide and TNF-alpha blockers for CRPS, but no published controlled trials as of yet. Numerous other oral drugs, including muscle relaxants, benzodiazepines, antidepressants, anticonvulsants, and opioids, have been reported on anecdotally. Some therapies have been the subject of early controlled studies, without subsequent follow-up (eg, ketanserin) or without an analogous well-tolerated and equally effective oral treatment (eg, intravenous ketamine). Gabapentin, tricyclic antidepressants, and opioids have been proven effective for chronic pain in disorders other than CRPS. Each has shown a broad enough spectrum of analgesic activity to be cautiously recommended for treatment of CRPS until adequate randomized controlled trials settle the issue. The relative benefit of oral medications compared with the widely used treatments of intensive physical therapy, nerve blocks, sympathectomy, intraspinally administered drugs, and neuromodulatory therapies (eg, spinal cord stimulation) remains uncertain. In summary, treatment of CRPS has received insufficient study and remains largely empirical.

your natural reaction will be that some specialist somewhere should look into all this and do any prescribing.  excuse me while i giggle, because there just aren't any brave souls lining up to help.  i am going to try to make an appointment with the hawaiian-shirted neuro-guy , but am pretty sure he no longer wants to deal with me, either. this may seem an odd complaint, but he tends to over-medicate me...

sorry to cram so much into one email.  please take your time responding, there is no rush (except for scheduling the echo and correcting the plaquenil, if that's okay).  and if you ever want to charge me for an office visit as part of dealing with such an email, i'm good with that, you brave, brave doctor man.

take care,

profderien

Alacrity of Crab and No Fear of Death

Set your sound system to mute.  I was thinking more of what Holly Near once looked like, on the steps of Sproul Plaza, than of the song, which I now realize that I hate.  It's a facile, good-for-nothing song.  And I'm just lazy enough not to want to spend five minutes reformatting this award-winning little vid so as to get rid of it.  

Plus, I have Cajun Blend Trail Mix seasoning stuck all over my fingertips, making them sticky, orange, and tangy.  I don't want to touch too much stuff, leaving cajun traces every which where.

Why don't I just wash my hands, spend the few minutes fixing the sound, and apologize to Holy Holly Near?  Well, who died and left you in charge?

There has been something potentially wonderful going on.  It's called clonazepam, and depending upon whom you ask, it is used to treat dystonia, anxiety, seizures, panic attacks, and insatiable lusting after good garlicky pickle juice.  I began noticing it being mentioned in articles about CRPS spasms/dystonia, mostly articles originating in the U.K.  Being at that "well, why the hell not?" stage of life, I emailed my good and faithful MDVIP physician, asking whether he thought it worth a try.  In lieu of a discussion, he called in a prescription to the Lone Alp Apothecary.

The first change of note was blubbery.  Babalushka bablubbery.  Sleeping as if it were le dernier cri and all the babalushka bablubbery surrounding it were refined messes worthy of literary awards.  I decided this was how I wished to die -- asleep, or contemplating sleep.  I kept all my other meds the same -- maxed out on Baclofen, even adding the odd tizanidine to the usual pain meds of methadone and endocet.  "Did I want to die?" you unsufferables are muttering, shaking your locks to-and-fro.

Why, yes, you unsufferables (and mutterers, too) -- I did hope to traipse off to death land.  I couldn't take it anymore.  The time awake was spent in rocking, tendon-splitting spasm, uncontrollable sobs that bored even the Feline Remnant.  The time asleep ordered itself around oneiric alphabetizing of what I could expect upon waking.  And upon waking?  Well, I was made to know that I was... "overwhelming." 

I put a lot of hope in an appointment chez Dr. PainManagementDood.  I know, I am stupid.  My previous appointment, to my recollection, had ended with the promise that the next one would entail a shift away from methadone, which, frankly, frightens me, and toward a better management of my baseline pain.  But -- AGAIN -- I was met with a Nurse Practitioner's big round eyeballs, and a "Uh, did we say we were going to do that?  Did you tell us your pain was out of control?  Can we take that up next month?"  I went home and vomited

So slipping away into babalushka bablubbery was a smiling, gently smiling thing, though lonely, and scary.

Then my spasms decreased in frequency.  Not in severity, ugliness, painfulness, no -- just stopped happening as much, as often.  I pushed the dosage of the clonazepam to the most recommended by good MDVIP go-to-guy, and cut back some on the baclofen.  

I started to be able to predict the babalushka bablubbery, so that a warm quilt could be at the ready, other important maintenance drugs could be taken on schedule, the room could be darkened, there was a semblance of... intent.  Occasionally, I risked thinking beyond the impending babalushka bablubbery, and plan to cook dinner for Fred, myself, and Bianca, because if I had to listen to that god-forsaken *ding* of the microwave one more time, I was going to revive Mengele's most promising experiments.  The secret lore of the Haddock clan includes the updated names and addresses of Auschwitz twins.  Sometimes, Reader, looking the good captain Archibald in the eye is a soul-sucking trauma.

It's been about a week now, I think.  I am not sure, at all.  I am not sure what day it is, not sure whether I believe the sources that yearn to ease my mind about it.  Is it 2:07 PM 5/18/2012 or is that just what you all want me to believe?  Hmm?  My pain level is very, very, very high -- I'd rank it around a nine, and it's distracting, it's evil.  I know I took my breakthrough pain medication and so cannot have more until roughly 7 PM.

The spasms are lasting only about 3-4 hours per day.  That is PER DAY.  TOTAL.  I am afraid to type it, afraid to publish it, afraid to believe it.

So God bless MDVIP Go-To-Guy, God bless him as he has never blessed a soul before.  You see, he believed me, he believed my desperation, he found merit, apparently, in my suggestion, and above all, Sweet Reader, he tried.  

He even heard me when I said I'd had it with Dr. PainManagementDood, and suggested another doctor, by name.  Unfortunately, that doctor has gone the route of ka-ching::ka-ching procedure land, and so only treats CRPS with sympathetic and regional blocks.  Oh, and SCS -- which would fly in the face of my recent decision to rip from my body all extraneous implants.  

Here is the kicker, though:  when he found that his referral was actually no referral at all, MDVIP Go-To-Guy offered to take over my pain management himself.  I probably should have said "Yes, and yay!" but a smarter self intervened to thank him but decline.  It's beyond unfair, to dump everything on him.  The current climate of looking over prescriber's shoulders and second-guessing their pain management decisions is not what I want to wish on him -- though there is little doubt my treatment would raise more than an odd and poorly tweezed eyebrow.

But here is a "Yay" for the man, anyway, because the combination of tizanidine, baclofen, endocet, methadone, and CLONAZEPAM seem to have quelled the spasticity enough that I must reconsider life.

Um, it also seems to have triggered something that I will call "automatic eating," which results in finding half empty yogurt containers in bed, and bowls of popcorn with kernels all hither, all yon.

There are increasing deficits, too, and these are the reasons for cutting back on dosages in the hope of finding a happy medium.  Legs not working too well, hands not grabbing with the alacrity of crabs. An absolute absence of the fear of death.

Someone asked for a visual update of hands and feet, so I pieced together the video below.  Again, I had fun with favorite things in juxtaposition.  

Which brings me back to Holly Near and her glorious red hair back in the mid-eighties, being all troubleshooting troubadour-ish on Sproul Plaza.  But really, what a shit of a song.

You know it and I know it -- were we really singing for our lives, it wouldn't be such a whine.  It'd be glorious.  It'd be red hair glinting in a setting sun.

gratuitous east coker: wanna know what i'm doing?

want to know what i am doing... right now, this very minute?

this:

addendum:  mdvip go-to-guy added clonazepam to my drug arsenal but it's too soon to say whether it's helping. yesterday (sunday) was the first full dose day.  due to constant clinching/declenching, my hips are sources of agony, and my knees, totally unreliable, and reluctant to bend. hard as it is for *me* to understand, i cannot expect for you to get it... but the cries and curses are a surprise -- the pain, a shock.

note that even dear dobby and dim buddy no longer respond to my whimpers. why should they? do i whine and give them a treat?  no.  do i yelp and offer a wunnerful wunnerful ear scratch?  no.  in all terms of feline / human interchange, i am a big nada zero zilch, the big nil.




So here I am, in the middle way, having had twenty years—

Twenty years largely wasted, the years of l'entre deux guerres
Trying to learn to use words, and every attempt 
Is a wholly new start, and a different kind of failure
Because one has only learnt to get the better of words
For the thing one no longer has to say, or the way in which
One is no longer disposed to say it. And so each venture
Is a new beginning, a raid on the inarticulate
With shabby equipment always deteriorating
In the general mess of imprecision of feeling,
Undisciplined squads of emotion. And what there is to conquer
By strength and submission, has already been discovered
Once or twice, or several times, by men whom one cannot hope
To emulate—but there is no competition—
There is only the fight to recover what has been lost
And found and lost again and again: and now, under conditions
That seem unpropitious. But perhaps neither gain nor loss.
For us, there is only the trying. The rest is not our business.

  Home is where one starts from. As we grow older
The world becomes stranger, the pattern more complicated
Of dead and living. Not the intense moment 
Isolated, with no before and after,
But a lifetime burning in every moment
And not the lifetime of one man only
But of old stones that cannot be deciphered.
There is a time for the evening under starlight,
A time for the evening under lamplight
(The evening with the photograph album).
Love is most nearly itself
When here and now cease to matter.

Old men ought to be explorers
Here and there does not matter
We must be still and still moving
Into another intensity
For a further union, a deeper communion
Through the dark cold and empty desolation,
The wave cry, the wind cry, the vast waters
Of the petrel and the porpoise. In my end is my beginning.
 

Just That Elemental

I've increased some of my medications in an effort to stop the spasms.  These demonic twitches have been starting up three times a day, lasting anywhere from just thirty minutes to an interminable three hours.  Their three instances vary, but the last few days have seen a pretty early first onset, around 11 am, with the second visit in the late afternoon, and the unforgiving third beginning almost promptly at 8:30 pm.  What has prompted me to resort to grabbing more pills, though, instead of white-knuckling my way through, are the changes in frequency and in the sly adjustments my enemy has made in how it conducts its wily, ugly, piece-of-crap self.

I'd never given much thought to how much time was elapsing between spasms, but when my screams seemed to be piling up, one shriek right on top of the echo of the last yell?  I decided to be oh-so-crafty, too, and count off the intervals.  My first attempt at counting, I made sure to follow the tenets of "one one-thousand, two one-thousand," calm, steady, and every time, I got to "eighteen one-thousand" before I had to scream.  Even when I felt stubborn and resolved not to make a sound when I hit "eighteen one-thousand," I had no ability -- none -- to stop that disturbing vocalization.  The second go-round with counting off the time?  I couldn't even maintain the pattern, that comforting rhythm, because the short-circuiting area of my brain decided on irregular firing, on pulses of 18, then twenty-two, then 12.  My point?  That is a very short amount of time between onslaughts;  There is no time for recovery.  This is new.

This is horrible.  I understand the meaning now of "I wouldn't wish it on my worst enemy." Okay, well, that is something of a sad confession.  Until this, until now, I had little problem wishing stuff upon my enemies, and I admit it.

A doctor told me recently that he would kill himself if he had CRPS.  I assume he meant CRPS as I have it  -- bad and unbeatable.  What else could I assume, since I was the only "CRPS referent" in the vicinity of the conversation, a conversation being held aloft by just three human tongues?  What is sad is not his comment (it's more in the category of neutral, a rhetorical ecru) but my complete lack of shock, the absence of any surprise.  "What? My God!  Why ever would you say such a thing?" has faded away and left me with "What?  What?  Oh, that?"


I can't kill myself right now because Fred would be lost, financially.  I promised, at some point, to take care of him -- and what I cannot explain here, though I assure you it is true, is how Fred has given up more than you can imagine, and that he did it for me, and that I owe him, as is said, big time.  He has not been able to travel certain paths, plan for life as he would have.

I have to keep my promises.

Yeah, so.  I don't know how I got to talking about *that*.  Good grief.

The other change in the current Shift Toward Intolerable?  The center for these bits of seizure has shifted so that I would swear (and bet all of Fred's inheritance, no matter the odds) my hips were grinding themselves to bony bits.  Actually, I have a prosthesis for a right hip, and the left hip is pinned. The right one is okay, most of the time.  I can tell there is activity on the right by the degree of generalized soreness.  It's my best major joint, that right hip!  Yay, right hip!

But the left hip, despite still having its original parts, is the Devil's Spawn.

Oh, I give up.  There's no explaining it, and why should there be?

The amount of Baclofen required to just get through the day is not enough to stop the pain.  Somehow, my mind is supposed to keep that knowledge front and center, available to reason.  As in:  Don't take more just because the pain continues, the screaming continues, the smashing and grinding continue.  It won't help and it could kill.  It's the same with the other meds -- with any medication, any drug.  It's imperative that I remember that in the middle of all the awfulness.

I think, every day, several times every day, how understandable it would be were I to forget.

On the way to the orthopedic surgeon's office on Thursday, I had just escaped the first of the three spasm periods for the day and hadn't had an opportunity to really process the night -- I woke myself with my own screams.  He was driving.  I was riding.  I thought we were okay.  I began telling him about the night, about the pain. He stopped me, said I overwhelm him.

All I could do then was cry.

Because -- of course, I overwhelm him.  Who would not be overwhelmed?  Who would not feel trapped?  Who would not be sick of pain, talk of pain, the sound of pain, its look?

But what makes me angry, besides being told, basically, to shut up, is that he thinks he knows what I am dealing with -- and he does not.  He thinks that if I feel it, I blurt it out -- I blurt it out all over him, and rush to do so -- and feel better afterward.  As if it were a beneficial purge.  Except that I don't.  I don't tell him most things, and I surely don't share with him most pains.

And it has been many years since I have felt better for having shared with him.

He is controlling me, in many ways, and I resent each of them.  I resent him.

He passes himself off as a "caretaker."

He does not.  He does not take care.  I tell you -- he could not discern another person's needs if you paid him to -- and, ha!  I do!  And he doesn't.  And I don't deserve this.  I have to keep living because of him and his inability to care for himself, never mind anyone else.

All of this is true, but all of this is nothing but me, unabashed, unfiltered ego, the moi at the center of the universe -- it lacks the grace of the angels, it lacks the child that shines from Fred, it doesn't pray for what the congregants are pleading.

It just freaking overwhelms.

I'm going to be twitching for a while yet tonight, and then later again. I need to wash and change my clothes, do the dishes, write my mother a letter, my brother Grader Boob an email.  Wave at the moon that is the same moon shining over the Grand Canyon, and over my brilliant brother Tumbleweed (and friends).  We got a postcard from him today. I swear, the boy is having a good time!

I wish I could be among those pilgrims.

Fred is asleep right now, curled up on the sofa.  He looked cold so I covered him with a blanket.
We need things just that elemental.