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

Baking Scones or Rotting Turnips: You Be The Judge

SPEEDO

I *know* that it is poor form (Oops! Someone has been watching too much of the London Olympics on the telly.  I wonder what's for tea this afternoon.  Is that the aroma of baking scones wafting my way or is it the bag of turnips I let rot on top of a bag of potatoes and a sack of fresh garlic?  We better have some clotted cream and jam, either way.)...

As I was saying, I know that regaling you with emails is the lazy woman's blog tactic, but this is the best way to bring you up to date as to what is happening to moi at the moment.  I could lie and say that I just hate repeating myself, but, puh-leeze, my Readership wouldn't fall for that.

So... Youse Guys already know how much I rely on the judgment of my MDVIP Go-To-Guy, otherwise known as a pseudo-concierge set-up with a spot on (Heh-heh) internist.  Well, here's the latest, and please keep the info in mind should my blog posts get even weirder, if I'm not batting on a full wicket (ar ar!).

I think I may take a break from the shivers and do some imaginary badminton.  Or rowing.  But if I choose to swim around the moat, it'll have to done nekkid, as I've heard those swimsuit contraptions are nearly impossible to put on without Randy from Say "Yes" To The Dress.  Check out how hard it was for Summer Sanders... and then die laughing thinking of me trying to get even one thigh in the right spot of fabric.

FIRST EMAIL, FROM ME TO MDVIP GO-TO-GUY, YESTERDAY:


i had my PICC line pulled tuesday.  still having fevers, sweats, chills, spasms, the whole spiel.  dr.b was out of town, saw his PA jacqueline.  when i asked what the plan was now, i was told "there is no plan." of course!  what was i thinking?


is this slow drop in hgb/hct anything to worry about?  i know it's not enough to explain fatigue, but i am so tired.  they drew labs again this week to see if it is still dropping and i am to show up for one more appt next week.




7/3
HGB 11.1
HEMATOCRIT 34.4
CRP 1.27 (EXPECTED < .8)


7/10
HGB 11.2
HCT 34.9
CRP  10.49 


7/17
HGB 10.8
HCT 34.3
CRP 1.73


7/24
HGB 9.9
HCT 31.2
CRP 2.28 


i see dr.d today and will see if i can get him to somehow pave the way with next week's appt with dr. s's PA.  i expect that appt will be a bust, but who knows.


i don't know what to do about my eyes... dr. k probably thinks i've disappeared.  ID informed me that p. acnes is one of the most "catastrophic" of all infections after cataract surgeries (well, *of course* it is!) and that she probably will want some assurance that there aren't any p. acnes colonies hanging around.  right-o!


yesterday, i briefly blacked out twice, both times while walking to the bathroom.  each time, i was able to forestall any severe damage or need for 911 by simply landing against the wall, leading with my head.  so my head hurts, but i'm fine.  i knew that my brain would count for something one day.  if it gets worse, i guess i'll Pick-A-Specialist, probably dr. m.


i hope you had a restful and refreshing vacation.


what are the odds that i could get dr. d to come HERE, versus wickedly tired fred and cheery me hauling ourselves out to the airport office?


profderien,
laughing all the way to hell


SECOND EMAIL, FROM MDVIP GO-TO-GUY TO MOI, YESTERDAY:

The HGB dropping below 10 could cause some fatigue. The main concern with anemia is to be sure it’s not coming from GI blood loss.

Have you seen blood in your stools or black, tarry stools to suggest older blood from the upper GI tract? If not, the anemia may be from suppression of your bone marrow from your chronic infection. That will only improve as the infection improves.

The blackouts are another concern. Please rely on your walker or scooter more since you have the anemia. You are at increased risk for blacking out and falling.

Please keep me updated on the labs, etc. I would also hold off on Dr. K until we know there’s no infection.

THIRD, AND FINAL OF THIS SERIES, FROM ME TO YOU-KNOW-WHOM:


dear dr. MDVIP Go-To-Guy,


i've put in a call to i.d., trying to get tuesday's lab results.  have both called and emailed.  i am feeling pretty awful, temp got to 101, dropped to 99, now back to 101, but more significantly, to me, i'm having chills, feel all woe-is-me-weepy, and exhausted.  there's been no feeling like passing out, just a feeling of distance/unreality.  and a headache.


if things get worse, i will contact them again, first, using the "emergency" line (my understanding is that dr. b is out of town), and do what they say.  if need be, i'll have fred drop me off at the Lone Alp ER.  unfortunately, he refuses to stay with me in the hospital any longer... he just hates that environment, and, it seems, me,  in that situation.  


i'm just letting you know in case there is a communication failure... for instance, when i had to go to the ER a few weeks ago, the EMTs reported that they picked me up in a "GP's office" [instead of the infectious disease infusion center] and that the problem was "a dislocated shoulder." i thought fred was following us over there but, no, he just got in the car and went home.  i was shivering so much i couldn't correct anyone, but wish i had a photo of the face of the x-ray tech who immediately filmed my shoulder.  she told me, "uh, we need to do this again because i seem to have cut off part of your... [long pause] ... clavicle."  sure, i could have told her there was no shoulder on that side, but why muck up a perfectly good learning opportunity?


it's often like that kid's game, "telephone," where you pass around a piece of information to see how changed it is at the end.


i hope to not be calling, but thought i'd give you a head's up.  thank you, thank you, for your good care and forbearance.  


much of that forbearance is put to use on these emails, i am sure.  sorry but when i feel this sick, i talk and talk.  i am afraid, and that's what i do!


so i at least hope that my verbose communication sometimes makes you smile, even if it kills an extra few minutes of your "free" time.


hey, j (j is his Super Nurse)!  come do private duty with me this weekend?????  movies, popcorn, wheelchair races?


oh, and the gut is fine, no obvious bleeding.


bowing out of another graceful communication,
profderien

So there you have it, Sweet Readership.

And as is always the case, I feel better already.

Cheerios and Fruitloops, Clotted Cream and Jam for all.

STOCKHOLM 1912

Passing the Duck Test

Late last week, I opened a blog post with those impossible to live down words:  "i'm sitting here weeping." 

Those words don't cause me shame, that's not the problem.  The lack of capitalization?  No, that could be readily fixed (I'm told).

Once again, it's the absence of heart, or as some WizKid might recast it all: my hopelessness.

Between you and me, I've been sitting around weeping a lot lately.  Of the twelve things most likely to be happening in our bedroom here in the Easternmost of the East Wings of Marlinspike Hall, me sitting whilst weeping is in the Top Four.

It's disgusting and not inspirational of anything except, perhaps, a triple-dose of nausea medication.

I saw my MDVIP Go-To-Guy on Monday, and left his office very confused, for he assured me that I made sense, thought logically, and was not being overly-demanding in my health care requests.

He intimated, even pretty much said, that my reactions, too, were not over-the-top, and that references to the Book of Job were correct within his understanding of the Biblical literary tradition.  Because I am not the type to interrupt my Physician while He is trying to speak, I thought -- demurely, quietly -- to myself, alone: "Doubtless the edition illustrated by William Blake!"

Lo, let that night be solitary, let no peaceful voice come therein (Job iii: 7).

Let the day perish wherein I was born (Job iii: 3)

So they sat down with him upon the ground seven days and seven nights, and none spake a word unto him: for they saw that his grief was very great (Job ii: 13).

In other words, he did the old "if it quacks like a duck" routine in reference to my suspicions that my left shoulder prosthesis remains, or is once again, infected.

He is a kind man, is my MDVIP Go-To-Guy, an excellent doctor, and I am glad we scrape the underpinnings of the more modern furniture, mostly reproductions, in The Manor's public vending areas and grateful that the miniature families on the domestic staff willingly sift the silty bottom of the moat for spare change.  We split the haul, fifty-fifty, because square is square.

You'd be amazed at the number of people who think that throwing things into the moat is an acceptable romantic substitution for tossing pennies into a well or euros in the Trevi fountain.  Of course, given that we sometimes attract a crowd heavily into the religious life, here more for our next door neighbors, The Cistercians, or equally heavy into heroin, hoping to score an inpatient bed at the posh Haddock Family Enterprises Addiction Center, headquartered in our barn -- we don't always come away rich in cast off coinage.

I didn't want to confuse you with haphazard detail, but most of those who drop by the Haddock homestead are also somehow related to the carnival, and are, in fact, often carnies.  Fred thinks its because we exude some sort of Rabelaisian exuberance, that we are, in short, relentlessly robust.  Fred obviously knows nothing of my time spent weeping and the suggestion that that might be one of the chief occupations of his boudoir would shame him.

Fred likes the more complicated explanations.  Me?  I'm all about Occam's Razor.  We attract addicted Catholic carnies because the Haddock Corporation opened a detox/rehab and decided to headquarter it in our barn, next to its tantalizing rope structures (connecting to the Manor proper via the Computer Turret), which fairly sings to those with gymnastic training, which is most everyone.  Oh, right, and we are smack dab next to Abbot Truffatore's Internet Office Supply Center, cleverly disguised as a rather ancient monastery.

Forgive the sarcasm, Abbot!

Anyway, I put every bit of money that we earn, find, and grow on trees into my MDVIP fund each year.  Even when I did not have the money for health insurance, at least, not at the rate charged by BCBS of Tête de Hergé, a cool $1513 per month -- Even then, I found the odd pile of silver so that I could continue under the care of an excellent physician who knew me well and was absolutely dedicated to keeping me out of the hospital and well, if the fates were so inclined.  Now that I have a PCIP health insurance policy, thanks to President Obama's Affordable Health Care Act For Expats Lost In The Heads Of Dead Belgians, I continue the tradition of remaining remarkably poor and still spending money I cannot spare on a boutique-type doctor.

Studies show that my method is both madness and cost-effective.  My MDVIP Go-To-Guy affords me the knowledge base and the organizational support I need as we go tripping and skipping around to the specialists, trying to keep the various disease conflagrations under control.

Like I said, he's a kind man, and an excellent doctor.  He answers his own phone, is forthright, and from what I hear around the custom coffee centre, plays passable tennis.  Add to that list of positives that his nurse has a superb head for politics and can always find a vein, and you've got overwhelming indicators for a fine medical practice of personalized primary care.

Monday afternoon, he was probably thinking, "Don't make any sudden moves... Smile a lot... Support her in her delusions..."

I felt about that crazy.  It's tiring, being led by the nose from one appointment or test to another, believing against the available evidence that you are following some master plan for a return to health, only to have that psychotic rug pulled out from under you.

It can lead to things like a bedroom dedicated to weeping and not wanton pleasure (or, if you cannot sleep, sex).

He carefully went over my lab work from the week before, and after pointing out the abnormal infection indicators, affirmed that I had, indeed, passed the Duck Test, and that he would call my orthopedic surgeon that very afternoon.

[The peculiar reason for which I was weeping in the boudoir last Thursday morning was an early morning call advising me that there was no need to keep my appointment with the surgeon that afternoon, as the (failed) aspiration of my shoulder had grown no pathogens in the lab.  "Great news," was the message.  "Great news, my chapped ass," was my ladylike response.]

Believe me, I know how strange it is to actually want surgery!  I feel downright odd fantasizing about ripping this bloody prosthesis from its slipping anchor, mwa ha ha!  If there were a home-based, non-surgical way to get rid of the infection, we'd have done it... three years ago.  If you are new to the Shoulder Saga, it is best summed up that way:  an infection of my bilateral shoulder prostheses that we are unable to eradicate or control, which is causing much pain and decline in quality of life.  Also, I am not serving anywhere near as many blistering aces as I oughta be.

The damned microbes refuse to show themselves when so invited by certified laboratory personnel.  They're exceedingly shy or something.

You may have noticed, as I sure had, that today was Wednesday.  There's been no crying or gnashing of teeth, but there has been a lot of pain and existing under cover of soft, worn quilts.  A quieter depression instead of a theatrical meltdown. Lots of pain and fever.  When I saw Go-To-Guy, I was at 100.5, and that's after I had taken a pound of Tylenol.  I have been hitting 101 most every afternoon, and feeling charming through chills and sweats, snarling with hypoglycemia, dry as a bone from dehydration, drifting off into polyuric dreams when the blood sugars climb too high from infection and steroids.

In all of those good times, I kept hearing him promise to speak with Surgeon ShoulderMan.  Bless the ShoulderMan's heart -- the infection persists in spite of his great skills.  He did my replacement on the right, then three years later, did a series of seven surgeries, yanking prostheses, putting in temporary spacers, regifting me with new prostheses, all the while managing my several sidetrips to Respirator Land.  It has been nothing short of a miracle, and my gratitude knows no bounds.  Unfortunately, neither does the infection in my left shoulder.

Monday afternoon, Tuesday, Wednesday.  Wednesday afternoon.

Yay!  MDVIP Go-To-Guy's nurse called this afternoon and I answered the telephone as if it were my greatest friend and not the object of my phobia.  She knew to cut to the chase, so she did: "Doc spoke with ShoulderMan.  His office will be calling you later today to set up surgery."

It made no sense that I was tongue-tied, but I was, and still am.  Of course, it is now 8:30 pm and nary a soul from that office has phoned, but maybe they are flying around the world backward on a rainbow jet stream of surgical gel and are experiencing a different time zone.

Maybe Buddy the Freakishly Large Kitten chewed through the landline phone wires again... Hmm.  (Nope, they're okay!)

If the past holds true, scheduling an infected joint "clean out" can be a bear.  They want you to be their last case of the day, so that the surgical suite can be thoroughly disinfected before they operate on anyone else -- but these are kind people and they know that sitting in a waiting room for hours, waiting to be called for major surgery, is stressful, too.  Factor in that it is the holiday season ("We celebrate them all!") and that they have a few gazillion other patients clamoring for action, as well... and it may be Friday before they call with info.

[How's that for pretending to be cool, calm, and collected?]

But there you go, Dear Readers, we are off on another surgical tour of the gunk inside these necrotic bones.  There is, literally, no other option that makes any sense, and even though we've failed in subduing these tiny forces of unrepentant evil thus far, this time we are gonna prevail... or I will come out of the experiment sans shoulders.  At least I know what that is like, now, and am not afraid of living without that thing defined by the area between the arm and the neck.

It's not like my brain is involved, duh.

Thank you so much, MDVIP Go-To-Guy.

No more sitting weeping from frustration.  Maybe I'll give fearlessness a try and give hopelessness a rest.  It could happen.

And... we're off!

How is it that hearing exactly what I expected to hear from the surgeon could depress me?  What is the point of even having expectations if they don't shield you from the negative effects of your own neurotransmitters?  Hmm?                              

Also, in case anyone had any lingering doubts, yes, pain is, indeed, subjective.

I recall this scenario having unfolded every time I've received the "we need to operate" response from ShoulderMan, a scenario that is now over the half-dozen mark.  By the time we are back home at The Manor, my pain levels rise to an obscene point, approaching the landmark "ten."  It honestly seems to hurt worse just because my excellent surgeon has opined that yes, surgery does look necessary.  That's nuts, makes no sense, and yet, is true.

We are going to proceed with the usual futility first, though:  Yes, another aspiration of the shoulder under fluoroscopy!  The eighth one.  May it be productive, because the first seven were not... Then, in 2 weeks, I will go back to hear how nothing continues to grow in the lab, and to finalize the scheduling for surgery.

At least I have an excellent excuse for bailing on the Wheelchair Negotiations for today.  The man handling my case is an idiot.  No, really, he is.  He also lies with excessive ease.  I don't know whether we are going to take our relationship to the next level of actually acquiring the new lightweight and speedy transport.

But, as I am trying to convince myself -- let that go until tomorrow.  I am spoiling for a fight, for anything that might distract me from the prospect of major surgery during the holidays, PICC lines and vancomycin (can't use the bleepety-bleep-bleep port installed in my chest wall for the post-op antibiotics), surgical cement spacers, and the subsequent surgery or surgeries to try and put in another prosthetic shoulder.

It's a darned good thing that The Nutcracker is such a piece of crap, both as music and as ballet -- because I am going to miss seeing it performed again this year!

That was supposed to be funny.

Fred has that deer caught in the headlights stare going on. Bless his heart, bless his bones.

The only good thing thus far today?  My surgeon just got back from Haiti, where things are, of course, really bad -- though he said things were more settled than they were immediately following the major quake, at least.  They desperately need orthopedic supplies -- crutches, walkers, canes, splints, slings, etc. -- and we have at our disposal an entire closet dedicated to the storage of such supplies.  It feels good to be able to put the stuff to some use, or it will, once Fred, Bianca, Sven, and I go over each item and refurbish things as best we can.  So that is one good thing for the day...

I just feel like weeping:  Therefore, let's post some cat videos!  If sending my orthopedic closet collection to Haiti and uploading a bunch of cute cat action doesn't dry my tears, what will?

First, we have Buddy in a Box.  Unfortunately, most of the footage of Buddy in a Box consists of no sign of Buddy but minute after minute of a mysteriously wiggling box.  Since he is more interested in me, for some reason, than his Bodacious Box, you lucked out this time, Beloved Readers!

Isn't it amazing how HUGE he has gotten, this freakishly large kitten that turned out to be a Maine Coon? Fred and I peer helplessly at one another and cry, "Who knew?" several times each day.

Next we have the Old Married Couple Series.  These are three videos of Dobby and Buddy, who suddenly have decided to promulgate peace, love, and understanding instead of trying to wipe each other from the face of the planet.  Okay, so Buddy is something of a recidivist, as he goes for Dobby's throat in the second video -- but he gets over the impulse and is soon right back to being a perversely large kitten, and all cuddly again in the third take.

As usual, please ignore the audio.  Seriously, it's embarrassing.

That would be heaven

I am having a weird day.  No, I don't feel like justifying either my definition of weird or exactly how any other day might be called less weird.

Part of the problem is that I am on a new medication that is kicking mine buttocks.  Of course, I looked it up, sure to find big old looming black-boxed warnings and pictures of necrotizing fasciitis -- only to find bolded and underlined reassurances as to how freaking mild a drug it is, how virtually no one has ever experienced even a twinge of a negative sensation from this pharmacological concoction (it's two, two, two drugs in one!).  Yes, according to my research, even an overdose is cause for balloons, cake, and karaoke.  The most severe reaction ever recorded?  A sneeze.

Me?  I've had the room go black three times since starting it yesterday morning.  You know, that lovely feeling of the lips going cold as vision fades and the floor rocks-and-rolls.  Given that the other endearing side effect is diarrhea, the fainting part -- from orthostatic hypotension -- is not much appreciated.  I don't stand very often... In fact, the only standing I do is when I take the perilous journey of five steps from wheelchair to toilet, or from door to bathtub, also about five steps.

I am a tough person.  I know that I have to give medicines a chance, have to allow time for adjustment, and so on, but I do get tired of the process.  There's little point in calling anyone, the situation doesn't demand a brainiac to decipher its intricacies, and besides, the prevailing attitude is that I can, and should, put up with most any physical./mental/emotional problem.  It's my lot.  It's the dealt hand.  It's -- well, you get it.

Since "we" are talking medications...

Twice yesterday my judgmental self went into overdrive over "wrong" attitudes.  Of course, in my present mood, an attitude that is wrong would be any attitude that deviates from my own, "right" one.  I need life to be simple for a day or two.

Let's see.  First, Fred came begging for tizanidine because he has a terrible backache.  That's fine -- he showed up begging because I suggested he take some of the drug to begin with.  I had given him about 10 or so a few months back, as his back has become more and more of an issue.  For Fred to make an issue of pain is an occasion of note, to be taken seriously.  Another important detail?  We are both, after our fairly extensive experimentation with recreational drugging as middle-aged youth, ardently against drug abuse and tend to undermedicate ourselves as a result.  In other words, I know that Fred would never wrongly or casually take medication.

But the boy does suffer from a sometimes severe case of ADHD, as well as living with the tough distractions that come from PTSD.  Organization is a constant struggle, memory more an ideal than a reality!

He moves around the Manor, showing me that he is actively searching for the aforementioned previously gifted bottle of tizanidine.  "Look," his actions cry out, "See me search?  See me search and not find?"

Rather than have *that* to watch all afternoon, I decided to gift him with some more tablets.  I was hurting rather awfully myself, had just put mine self in bed, and didn't want to move a single muscle.  So I asked him to bring me an empty pill bottle for the stuff...

He first brings an old pill cutter thingy that also has three compartments for pills.  The problem is, each compartment is full, occupied by previous pharmaceutical offerings on my part.  Me being me, each compartment is labelled, and none of the labels say "tizanidine."

"You actually expect me to mix tizanidine, a round white pill, in with this prednisone, also a round white pill?" Knowing, as you do, Dear Reader, that I am feeling pissy and that I'm a dyed-in-the-wool teacher-type, you can imagine the tone I adopted.  (Yes, I also find that tone repulsive.)

"Hmmm?  What?  Oh, yeah, that will be fine.  I'll remember the difference,"  he proffers, while staring distractedly at the Nadal-Roddick match on the telly.

Anyway, after I reject that idea, he repeats it... and later, when my own pain pills have kicked in, I give him a properly labelled, single-use bottle.  But I make a point of adding a review of all those bottles on his side of the Big Round Bed to my Long List Of Seemingly Pointless Tasks.  It scares me, the thought of him reaching for one thing and possibly ingesting another.

My other pet peeve is activated, usually, on the internet.  I am incredibly judgmental of "pain" patients when they allow their tone to become too casual in referencing opiates, or any other strong medication.  It's my contention that that very laxity is what can get us in trouble, perhaps addicted to opiates even when/if our condition improves.

Language *is* attitude.  So when I read "perks," in lieu of Percocet, or "meth" instead of Methadone, I respond pretty negatively.  To everyone rolling their eyes, I say that vigilance in these smaller reflections of larger attitudes is warranted.

Even writing "scripts" for prescription bugs me.  I'm hyper-aware, hyper-judgmental -- which is just as abnormal as romanticizing tablets and pills, but I'd rather be sick with an abundance of caution than sick with opiate withdrawal.  Oh, dear God, I will never forget the Great Jump Off back in May and June! Never, ever.

Along with an inevitable hardening of my arteries, I am experiencing a hardening of my heart.  On the one hand, I am generous and would do anything for a loved one;  On that other hand, I am amassing a disturbingly long list of things that I find notably distasteful.  I thought that the apotheosis of my propensity for Hate came with the cut-out picture of Jesse Helms (next to one of Augusto Pinochet) that was neatly held to my apartment door by the knife embedded in his forehead.

I was wrong.

I'd better change the subject.

I bought a vacuum cleaner.  Two vacuum cleaners, actually.  Sad to say, I am all a-dither over my purchase.  Once upon a time, I felt that way about a new pair of shoes, a dress, a book, a reliable source of endive, inexpensive printer ink, or a sale on my favorite tennis balls.

I spent about a week researching vacuums.  I engaged the dichotomy of canister versus upright.  I did Consumer Reports, I did customer reviews.  I gauged the importance of  pet hair;  I pondered the impact of noise on my hearing.

I role-played.  I envisioned.  I convened a Blue Ribbon Panel.

Vacuuming via wheelchair is different from doing it while standing.  That's pretty obvious! Also different is losing the use of one's shoulders and having diminishing strength in the hands.  Clearly, we needed lightweight sucking tools and maneuverability, simplicity.  Ah, but the first thing that goes, I found, when you push those requirements to the head of the list?  Power!  Effectiveness!

So... I dragged out the adage of my youth:  It only costs 10% more to go First Class (an adage not known for its accuracy).  A more popular variation:  You get what you pay for.

So, yes, I spent a small fortune on my vacuum duo -- being both a lightweight upright and a canister with on board tools.  Rave reviews from me on the upright -- and consternation on the canister. That will change into the anticipated joy once I figure out how to carry it.  I looped it around my neck yesterday and that was quickly very painful.  It was designed to be tossed casually over the shoulder, but that I cannot do, so... I will have to find an alternative method of canister vacuuming.

O, but it has a beautiful telescoping wand for easy clean-up of things like slats and air vents!  O!

Ideally, I'd have gotten cordless devices but cordless and power don't go together any better than my initial demands.  And in this instance, the problem isn't solved by spending more money.

I do have a point, in case you are bored with reading about my Hoovering prospects: I end up spending more money (and working harder at the task at hand) than able-bodied people in order to achieve the same boring, everyday results.  Because I cannot work, I have less money to begin with... And it just is pissing me off.

It wasn't supposed to be this way.

Is it living when, at the end of a long day, I reflect on its various hours only to discover that almost every moment was dedicated to the alleviation of, or distraction from, physical pain, a goal never actually accomplished, and forever put off to the next day?  I don't think so.  It's not the way I wish to live.

At least the available remedies aren't difficult to assemble -- suicide, asinine sublimation, or less-asinine sublimation.  Whatever I chose to do, I am either dead, essentially dead, or a living-falsehood-biding-its-time -and-wasting-everyone-else's-time-until-dead.

You know what would really improve the gimp-friendly high end vacuum cleaners -- until that glorious day when cordless cleaners truly are powerful enough to clean Marlinspike Hall's peculiar kind of filth?  If they were all equipped with retractable cords.  That would be heaven.