Thursday, January 10, 2013

"Even in this nicke of time, this very, very instant."

I'm probably the only person in the northern climes running the air conditioner.  My initial excuse was that the air needed dehumidifying.  When that got the bald eyeball, I admitted to being hot.  Now it's getting a bit cool but I'm safely ensconced in comfy bedding, hoping someone else will discover how to use the thermostat.

Life with fevers!  Hot, cold, sweaty.  I want frozen fruit, no, wait, I want hot soup, with many spices and several of TW's dried jalapeños, for good measure.  Wait, hold the soup, and gimme an ice pack!

But it's been kind of a nice day.  Pain sitting at a mere 6 out of 10 (whatever the heck that means) and Buddy has discovered all my old cashmere leg warmers.

Cashmere leg warmers, when sprinkled with catnip and then rolled into a ball, are objects of drooling adoration for Mr. Buddy.  And they're perfect for me -- I throw like a girl, so what better thing for me to be tossing about but bright red or sexy black cashmere leggings?  I am achieving amazing distances and Buddy is uprooting all the haphazardly strewn about area rugs in our chichi wing of Marlinspike Hall.

I have quarantined myself in our cozy little wing because the staff is coughing and sneezing and generally making any gross respiratory-related, gravelly noise possible.  Roughly 80% of the staff has the flu and the other 20% are apparent mimics.  I'm not letting those walking microbes across my line in the sand... not for nothing.

Every year, my MDVIP Go-To-Guy and I have the same conversation about the flu vaccine.

Oh, I probably haven't mentioned that I had the Grand Pooh-Bah of MDVIP Appointments last week, last Thursday to be exact.  I dread these annual affairs, and they always turn out... fine.
More on that later.

Back to the recurring flu vaccine conversation.  Back in 2005, I was an advocate of the vaccine, thought nothing of it, was very grateful for it, even though I'd had the flu a few times after getting it -- either getting a variant not covered by the flu-guessers or bad timing.  That year, I'd just had my right shoulder replaced by none other than our beloved ShoulderMan -- it was our first meeting, back when things seemed much more straightforward!  I had a few problems afterward, weird stuff, of course -- a necrotic lymph node right next to the surgical site, and a pretty severe anemia, despite having had a top-off at the hospital prior to discharge.

This was before Go-To-Guy went all MDVIP on everyone, back when he was one of the founding docs of a pretty large, very busy practice.  I came in because I was inexplicably getting weaker, and  blahblahblah we discovered I was just anemic.

"While you're here, why don't we give you your flu shot?  I know you're a little run down, but what could happen?"

Please pay attention to that phrase: "what could happen?"

Informed consent, wham, bam, thank you super nurse, I got my shot and we headed home.

Two hours later, I was deathly ill.  Fred, not always quick to pick up trouble, being a cheerful and positive kind of guy, went and bought the Mucinex that Go-To-Guy recommended.  And that's the last thing I remember until I woke up about five days later on a respirator, overwhelmed by the sensation that I had missed something.

Anyway, "what could happen?" became a catchphrase that reduces me and Fred to tearful hysteria.  It just cracks us up.

And Go-To-Guy wipes the story from his memory every year.  Psychic trauma does that to people.
Last Thursday, as he talked me into taking the pneumonia vaccine, he opened his mouth, which then sort of flapped around aimlessly, because you *know* what he was about to say!  It was almost the same situation as the phrase's début iteration -- we were dealing with being rundown from my stomach bleed, with a low hemoglobin (but so much better, thankyouverymuch!).

I about fell on the floor laughing.  (No, I didn't.  That would have been... rude.)

There's been nary a hint of a problem from the vaccine.  But think carefully the next time you're tempted to gloss over potential pitfalls with a blithe "what could happen?"!

So... part of these annual MDVIP "physicals" is a prompt summary letter afterward to remind you of what you just talked about the week before.

The happy experience of discovering that my desire to be on "Do Not Resuscitate" status was not going to cause me or my treating physicians a boatload of upset or the need for reinventing the wheel -- well, I had not had the chance to even run it by my MDVIP Go-To-Guy Treasure of a Physician.  We had exchanged emails, but I was always in a snit over something, over-the-top, and he's a born optimist.  So I was never sure if we were talking about the same thing.

That my last hospitalization went so well, that this potentially thorny issue proved thornless, had nothing to do with him -- turns out, he didn't even know I had stayed as long as I had.

So last week, I let him know the day before the big exam that I was hurting a lot and would appreciate it if we skipped most everything so I could get home and rest my nasty bones.  We always need to go over meds and that takes a long time -- it's very useful and helpful, and it actually serves well as a guide for what is going on in each "system." As we discuss a drug, we discuss the problem, we make adjustments, etc.  We review my blood work, which, frankly, depresses me.  There is no way to dress up those results.

I couldn't bring myself to look at this kind man, or at his super kind nurse, and even say "DNR." But I found words, and delivered them with what I hoped was good humor and appreciation.

Here's the relevant paragraph from the letter I got today:

"Unfortunately, you continue to have severe pain with your hips being the most prevalent at this time.  It is certainly possible you have an infection in one or both of your hips and it sounds like your left shoulder may have infection in it as well.  The elevated white blood cell count and the persistent low grade temperature support this fact but we really have not been able to eradicate this infection by the use of either oral of IV antibiotics.  As you said to me, I think right now the best approach is pain management and 'putting out any of the fires that we can.' Ideally, surgical resection of any hardware in your joints with heavy doses of IV antibiotics would be the only way to eradicate this ongoing infection but I am not sure you are willing to proceed with anymore surgery and frankly, I am not sure if your body could take much more than what you have been through."

He did hear me.  He always has.  I am really blessed.  Because I did not make it easy for my physician to hear me.  I flirted with the concept of "stopping," but then, when it got hard, I called for help.  Now comes the test.  At any given time, there are "fires," but which are the ones that threaten the foundation?  Which are just flare-ups, little grease fires that can be squashed with a cooking lid or stifled with a damp towel?  When do I just drop and roll -- with prayer or mute begging to the universe, or, if I am doing well, and have done my work, the hope of resolution?  And when, prayer, begging, and work done, but Death dallying, do I call for help, because it's just a straightforward blaze that a spritz or two will stop?

Were he not such a good guy, I'd ask MDVIP Go-To-Guy, but it's not his place to be asked, and it's not his place to answer.  It's not Fred's place, though it will be his to endure the results.

It's time for me to grow up -- it's the very nick of time.  I'm gonna have me a chat with Buddy.



The English language gives us the opportunity to be 'in' many things - the doldrumsthe offingthe pink; we can even be down in the dumps. With all of these expressions it is pretty easy to see what they refer to, but what or where is the 'nick of time'? It may not be immediately obvious what the nick of time is, but we do know what it means to be in it, i.e. arriving at the last propitious moment. Prior to the 16th century there was another expression used to convey that meaning - 'pudding time'. This relates to the fact that pudding was the dish served first at mediaeval mealtimes. To arrive at pudding time was to arrive at the start of the meal, just in time to eat. Pudding was then a savoury dish - a form of sausage or haggis (see also the proof is in the pudding). Pudding time is first referred to in print in John Heywood's invaluable glossary A dialogue conteinyng the nomber in effect of all the prouerbes in the Englishe tongue, 1546:
This geare comth euen in puddyng time ryghtly.
In the nick of timeThat seems a perfectly serviceable idiom, so why did the Tudors change it to 'the nick of time'? The motivation appears to be the desire to express a finer degree of timing than the vague 'around the beginning of the meal'. The nick that was being referred to was a notch or small cut and was synonymous with precision. Such notches were used on 'tally' sticks to measure or keep score. Also, during the 16th century, pudding began being used as the name of sweet dishes and they were usually served at the end of the meal. As this trend continued 'pudding time' being used to mean 'in good time' made less and less sense.
Note: the expressions 'keeping score' and 'keeping tally' derive from this and so do 'stocks' and 'shares', which refer to the splitting of such sticks (stocks) along their length and sharing the two matching halves as a record of a deal.
If someone is now said to be 'in the nick' the English would expect him to be found in prison, the Scots would picture him in the valley between two hills and Australians would imagine him to be naked. To Shakespeare and his contemporaries if someone were 'in (or at, or upon) the (very) nick' they were in the precise place at the precise time. Watches and the strings of musical instruments were adjusted to precise pre-marked nicks to keep them in proper order. Ben Jonson makes a reference to that in the play Pans Anniversary, circa 1637:
For to these, there is annexed a clock-keeper, a grave person, as Time himself, who is to see that they all keep time to a nick.
Arthur Golding gave what is likely to be the first example of the use of 'nick' in this context in his translation of Ovid's Metamorphosis, 1565:
Another thing cleane overthwart there commeth in the nicke:
The Ladie Semell great with childe by Jove as then was quicke.
The 'time' in 'the nick of time' is rather superfluous, as nick itself refers to time. The first example of the use of the phrase as we now know it comes in Arthur Day's Festivals, 1615:
Even in this nicke of time, this very, very instant.

Wednesday, January 9, 2013

Good Night, Sweet Dreams of Marshmallow Trees!

It's the middle of the night again -- funny how that happens, how compelled we feel to mention it.  "Oh, dear, it's the quiet time, and I am all noisy."

I've been reading and reading -- still determined to start jotting down the hysterical mistakes I come away with due to my bad eyes.  Sometimes the plots in fictions take downright odd turns;  Scientific texts tend toward the suddenly macabre.  At least it has become funny.

My stomach hurts pretty badly, so I am heading out for some yogurt and fruit.  Anything to absorb the acid.  We're starting the umpteenth medication against GERD and gastritis and ulcers tomorrow, *if* approved by insurance.  Something called Dexilant, which, of course, has no generic formulation.  Money, money, money...

But if my esophagus and stomach continue their slow leak, I'll never get any zip.  Any... you know... desire to do something besides consider, possibly, turning over.

Nah... it's getting better, except for these few bad moments that unfortunately are more likely to make me want to peck at the keyboard than those momentous periods of joy when I'm out dancing in the meadows and jumping rocks in streams.  You know, leaping from one granite boulder to the next, foamy eddies swirling -- so cold in these winter months.  When I fall in, oh, what a hoot, and we trudge back to the chalet and have hot cocoa with little melted marshmallows.

My stepmother had me believing in marshmallow trees when I was a kid.  Also money trees.  Trees of any sort, I would believe.  Not strong in her botany, my queries as to where things came from were unusually grounded in product-specific trees.

I'm supposed to add Pepcid, too, to the mix.  At "bedtime." I have a hard time not laughing at the standard advice, so well-meant.  "First thing in the morning..." Wellllll, that could be now, 2:30 AM or that might turn into 1 PM.  "Three times a day, before each meal..."  If I'm leaking blood, I'm nibbling all the time and there are no meals.  If I'm in pain, there is one meal.  If someone volunteers to cook, then there might be three meals in a day, but more likely one grand and sumptuous one.

But it is so rude to interrupt and try to explain one's odd habits.  It's like the student who drives the teacher nuts with "but at my old school we did it this way." The student who grows into the worker who whines "but at my last job..."

No one cares, we are just all trying to get through this!  Do the best you can!

Okay, I hear the piano.  Aha!  I think I will go scope out the musical action.

Good night?

From Blog Planet Pointless

Tuesday, January 8, 2013

::into::great::silence::by Philip Gröning

This is one of my "focal points," a centering place, for use on a tough day. It stands alone for its beauty, and its portrayal of monasticism, its good, its bad, its nonchalance, its difficulty, its surprising ease.

It's what I feel I need, when I get rarefied airs. It's what Abbot Truffatore flees when he hops the stone fence in the orchard, sheds his long frocks and golden do-dads, and dons plaid fleece shirts and pleated chinos.

Just to whet your appetite for the entire documentary, here is part one of seven.

About the film, from Wikipedia:

Into Great Silence (GermanDie Große Stille) is a documentary film directed by Philip Gröning that was first released in 2005. It is an intimate portrayal of the everyday lives of Carthusian monks of the Grande Chartreuse, high in the French Alps (Chartreuse Mountains).

The idea for the film was proposed to the monks in 1984, but the Carthusians said they wanted time to think about it. The Carthusians finally contacted Gröning 16 years later to say they were now willing to permit Gröning to shoot the movie, if he was still interested. Gröning then came alone to live at the monastery, where no visitors were ordinarily allowed, for four and a half months starting in mid-March 2002. He filmed and recorded the sound on his own, using no artificial light. Additional shooting of the documentary took place in December and January; Gröning spent a total of six months filming in the monastery and took about two and a half years to edit the film before its release. The film has neither commentary nor sound effects added, consisting only of images and sounds of the rhythm of monastic life.[1]

The film has experienced generally laudatory reception, with 89% critics responding with positive reviews at T-metric section of Rotten Tomatoes and a "certified fresh" rating.[2] United States Conference of Catholic Bishops' Office for Film and Broadcasting listed Into Great Silence as one of the best ten films of 2007.[3] The Carthusian monks themselves loved the film.[1]


Monday, January 7, 2013

CRPS Case Study: Recurrence After Use of Capsaicin patch

This is not me... but I've closely resembled this highly inflamed "red stage" in both hands and feet. The skin in CRPS' red phase can radiate heat that can be felt from a foot away.  This is close to how my extremities react to applications of lotions, medicated creams and patches.

Although this article has the limitations inherent to any case report, I am grateful to see it.  Just by coincidence, I've been inundated with suggestions from well-intentioned curious medical types about what lotions or patches I should apply to my legs and hands.  My response, that applying anything beyond the special antibiotic soap (a 2% solution of Hibiclens), any lotion, oil, or capsaicin cream/patches, lidocaine patches, cause an extreme, immediate, and long-lasting inflammatory response.  My entire lower leg or forearm immediately swells, turns boiled-lobster red, with what almost seems a boiled-lobster temp, and -- just for giggles -- breaks out in... welts.  Welts?  (I don't really know what to call them... maybe they're bubonic plague bullae or maybe they're more akin to a mess o'flea bites, whatever is ugliest or über gross.  Fluid-filled and not itchy, oh no, that would be too pleasant -- because they burn.)

Anyway, it's hard to explain why I cannot lather my extremely dry skin with soothing emollients... so as I said -- I'm grateful to see this case study!

Yes, damn it, I did recently praise myself to High Heaven for my circumspect descriptions of CRPS' impact on my body.  Be divine, and forgive the occasional slip-up?

In other news, I am multi-tasking my efforts at distraction for pain relief, and that's meant excessive television viewing these past few days.  Did you know there is an Amish Mafia?  Live and learn.  The episode blasting in the background right now features Big Bad Lebanon Levi and the "fights" -- they have MMA matches.  Good Wikipedia warns me, however, that the whole show may be nothing but lies, legends, and nonsense.  Whew.  Back to the norm for "reality" television.

Ahem, without further ado, here's the abstract of the case study in question:

Der Schmerz. 2012 Dec 9.

Pronounced symptom deterioration in complex regional pain syndrome type II after isolated application of a highly concentrated capsaicin patch : A case report.

[Article in German]

Girtler RKloimstein HGustorff B.

Abteilung für Anästhesie, Intensiv- und Schmerzmedizin, Wilhelminenspital der Stadt Wien, Montleartstr. 37, 1160, Wien, Österreich,

Topical 8 % capsaicin is an established therapeutic option for the treatment of peripheral neuropathic pain. In accordance with the internationally accepted definition, complex regional pain syndrome (CRPS) type II is a form of neuropathic pain so that capsaicin plasters represent a treatment option. However, for the treatment of CRPS it is recommended that painful stimuli should be avoided but capsaicin induces a strong nociceptive stimulation and so its use is at present controversial.We report on the course of such an application in a patient who developed CRPS type II with intractable neuropathic pain after hallux surgery. As a result of a single treatment with capsaicin a pronounced recurrence developed with central nervous symptoms.

Further Resources:
First two pages of text (the second has several photos)


  1. Anand P, Bley K (2011) Topical capsaicin for pain management: therapeutic potential and mechanisms of action of the new high-concentration capsaicin 8% patch. Br J Anaesth 107:490–502 CrossRef
  2. Cheshire WP, Snyder CR (1990) Treatment of reflex sympathetic dystrophy with topical capsaicin. Case report. Pain 42:307–311 CrossRef
  3. Harden RN (2005) Pharmacotherapy of complex regional pain syndrome. Am J Phys Med Rehabil 84:17–28
  4. Harden RN (2010) Validation of proposed diagnostic criteria (the „Budapest criteria“) for complex regional pain syndrome. Pain 150:268–274CrossRef
  5. Lanz S, Maihöfner C (2009) Symptome und pathophysiologische Mechanismen neuropathischer Schmerzsyndrome. Nervenarzt 80:430–444CrossRef
  6. Mackey S, Feinberg S (2007) Pharmacologic therapies for complex regional pain syndrome. Curr Pain Headache Rep 11:38–43 CrossRef
  7. Perez RS, Zollinger PE, Dijkstra PU et al (2010) Evidence based guidelines for complex regional pain syndrome type 1. BMC Neurol 10:20CrossRef
  8. Ribbers GM, Stam HJ (2001) Complex regional pain syndrome type I treated with topical capsaicin: a case report. Arch Phys Med Rehabil 82:851–852 CrossRef
  9. Ribbers GM, Geurts AC, Stam HJ et al (2003) Pharmacologic treatment of complex regional pain syndrome I: a conceptual framework. Arch Phys Med Rehabil 84:141–146 CrossRef
  10. Robbins WR, Staats PS, Levine J et al (1998) Treatment of intractable pain with topical large-dose capsaicin: preliminary report. Anesth Analg 86:597–583
  11. Eisenhart-Rothe R von, Rittmeister M (2004) Medikamentöse Therapie des komplexen regionalen Schmerzsyndroms Typ I. Orthopade 33:796–803
  12. AWMF-Leitlinien-Register Nr. 030/116 (2008) Diagnostik und Therapie komplexer regionaler Schmerzsyndrome (CRPS). Leitlinien für Diagnostik und Therapie in der Neurologie, 4. überarbeitete Aufl. Georg Thieme, Stuttgart

Description of Journal Der Schmerz

ISSN: 0932-433X (Print) 1432-2129 (Online)
Zielsetzung der Zeitschrift Der Schmerz ist ein international angesehenes Publikationsorgan und wendet sich an Ärzte aller Fachgebiete sowie an Allgemeinmediziner und Psychologen, die mit der Behandlung von Schmerzpatienten oder in der Schmerzforschung beschäftigt sind. Das Ziel der Zeitschrift ist es, die Versorgung von Schmerzpatienten langfristig zu verbessern. Praxisorientierte Übersichtsarbeiten greifen ausgewählte Themen auf und bieten dem Leser eine Zusammenstellung aktueller Erkenntnisse aus allen Bereichen der Schmerzforschung und Symptomkontrolle bei Schmerz. Neben der Vermittlung von relevantem Hintergrundwissen liegt der Schwerpunkt dabei auf der Bewertung wissenschaftlicher Ergebnisse unter Berücksichtigung praktischer Erfahrung. Frei eingereichte Originalien ermöglichen die Präsentation wichtiger klinischer Studien und dienen dem wissenschaftlichen Austausch. Kasuistiken zeigen interessante Fallbeispiele und ungewöhnliche Krankheits- bzw. Behandlungsverläufe. Beiträge der Rubrik „CME: Weiterbildung – Zertifizierte Fortbildung“ bieten gesicherte Ergebnisse wissenschaftlicher Forschung und machen ärztliche Erfahrung für die tägliche Praxis nutzbar. Nach Lektüre der Beiträge kann der Leser sein erworbenes Wissen überprüfen und online CME-Punkte erhalten. Die Rubrik orientiert sich an der Weiterbildungsordnung des Fachgebiets.
Aims & Scope Der Schmerz is an internationally recognized journal and addresses all scientists, practitioners and psychologists, dealing with the treatment of pain patients or working in pain research. The aim of the journal is to enhance the treatment of pain patients in the long run. Review articles provide an overview on selected topics and offer the reader a summary of current findings from all fields of pain research, pain management and pain symptom management. Freely submitted original papers allow the presentation of important clinical studies and serve the scientific exchange. Case reports feature interesting cases and aim at optimizing diagnostic and therapeutic strategies. Review articles under the rubric “Continuing Medical Education” present verified results of scientific research and their integration into daily practice. Review All articles of Der Schmerz are peer reviewed. Declaration of Helsinki All manuscripts submitted for publication presenting results from studies on probands or patients must comply with the Declaration of Helsinki. Indexed in Science Citation Index Expanded, Medline, Neuroscience Citation Index, Research Alert, EMBASE and Scopus.

Intrathecal Baclofen in CRPS

Anesthesia & Analgesia 2013 Jan; 116(1):211-5.

Efficacy of intrathecal baclofen on different pain qualities in complex regional pain syndrome.

van der Plas AAvan Rijn MAMarinus JPutter Hvan Hilten JJ.

Department of Neurology, Leiden University Medical Center, PO Box 9600, 2300 RC
Leiden, the Netherlands.  A.A.van_der_Plas@lumc.n.

BACKGROUND: Complex regional pain syndrome (CRPS) is characterized by severe
debilitating chronic pain. Patients with CRPS may experience various pain
sensations, which likely embody different pathophysiologic mechanisms. In this
study, we evaluated the differential effects of central γ-aminobutyric acid (B)
receptor stimulation on the different pain qualities in CRPS patients with

METHODS: The 10 pain qualities of the neuropathic pain scale, dystonia severity,
and changes in use of antinociceptive drugs were evaluated every 3 months for a
period of 1 year in 42 CRPS patients with dystonia receiving titrated doses of
intrathecal baclofen (ITB) treatment in an open design.

RESULTS: Using a linear mixed model analysis and controlling for global dystonia
severity and the use of supplemental analgesics, we found a significant
improvement in global intense pain, sharp pain, dull pain, and deep pain during
the first 6 months. After this period, the scores leveled off despite further
improvement of dystonia and continued ITB dose escalation.

CONCLUSIONS: γ-Aminobutyric acid (B) receptor stimulation by ITB exerts
differential antinociceptive effects on specific pain qualities in CRPS patients
with dystonia.

PMID: 23223108  [PubMed - in process]


Have you seen Scott Reuben?

Another bit of housekeeping, this related to a promise to keep half-an-eye on ex-con physician Scott Reuben.  To read my previous posts on "doctor" Reuben, click HERE.  While we wait for him to make [up] the news again, here's the obvious question on many peoples' minds:

Big Pharma's Ghostwriters
Why Are These Fraudulent Papers Unretracted?

According to Science Times, the Tuesday science section in the New York Times, scientific retractions are on the rise because of a “dysfunctional scientific climate” that has created a “winner-take-all game with perverse incentives that lead scientists to cut corners and, in some cases, commit acts of misconduct.”

But elsewhere, audacious, falsified research stands unretracted–including the work of authors who actually went to prison for fraud!

Richard Borison, MD, former psychiatry chief at the Augusta Veterans Affairs medical center and Medical College of Georgia, was sentenced to 15 years in prison for a $10 million clinical trial fraud[2] but his 1996 US Seroquel® Study Group research is unretracted.[3] In fact, it is cited in 173 works and medical textbooks, misleading future medical professionals.[4]

Scott Reuben, MD, the “Bernie Madoff” of medicine who published research on clinical trials that never existed, was sentenced to six months in prison in 2010.[5] But his "research" on popular pain killers like Celebrex and Lyrica is unretracted.[6] If going to prison for research fraud is not enough reason for retraction, what is? [Please read the rest of the article HERE.]


[2]  Steve Stecklow and Laura Johannes, “Test Case: Drug Makers Relied on Two Researchers Who Now Await Trial,” Wall Street Journal, August 8, 1997

[3] Richard Borison et al., “ICI 204,636, an Atypical Antipsychotic: Efficacy and Safety in a Multicenter, Placebo-Controlled Trial in Patients with Schizophrenia,” Journal of Clinical Psychopharmacology 16, no. 2 (April 1996): 158–69

[4] Alan F. Schatzberg and Charles B. Nemeroff, Textbook of Psychopharmacology (New York: American Psychiatric Publishing, 2009) p. 609


[6] Scott Reuben et al., “The Analgesic Efficacy of Celecoxib, Pregabalin, and Their Combination for Spinal Fusion Surgery,” Anesthesia & Analgesia 103, no. 5 (November 2006): 1271–77.

Have You Seen Lindsey Baum?

There is no news about missing child Lindsey Baum but I've been remiss at keeping her name and face fresh here... The following is taken from the initial page of the Official Website for Missing Child Lindsey Baum.

At *this* moment, it has been 1290 Days, 16 Hours, 36 Minutes, and 31 Seconds since her abduction.

Lindsey Jo Baum 

Missing Since: 06/26/09
Missing From: McCleary, WA
Classification: Endangered Missing
Age at Disappearance: 10
Date Of Birth: 07/07/98
Height: 4’10
Weight: 90 lbs
Eyes: Brown
Hair: Brown/Dark Blonde
Colored fillings in her teeth
Clothing: long sleeve hooded shirt (not sweatshirt) light bluish/gray, jeans with knees cut out, black slip on american eagle shoes with white rubber soles, no socks. bathing suit under clothes red/white/blue in color for both pieces but mismatched bottoms a floral print, top stripes and polka dots.

Details of Disappearance:

Lindsey disappeared on June 26,2009 while walking home [from a friend's home] in McCleary, WA at about 9:30 in the evening. This was one of the longest days of the year and didn’t get dark until around 10:30 that night. It was still daylight out as she left for the short 5-10 minute walk home.

She never made it home that night.

Who to Contact with Information:
Grays Harbor County Information Hot-line (Tip line) (866) 915-8299, Email: or you may submit a tip via the contact us link on Lindsey’s Official website and the information will be passed on to the Law Enforcement officials working Lindsey’s case.
[OR DIAL 911]

Sunday, January 6, 2013

CRPS: Feet Update

It's many hours later. I am enjoying the season premier of Downton Abbey and was thrilled to discover that the DVR has also, apparently of its own volition, recorded a good many of the old Upstairs, Downstairs, and I guess these tidbits of confessional viewing habits tell you quite a bit!

Fred cannot abide looking at my hands.

He offers, freely, and with good intentions, to do anything for me -- I've but to ask. I've asked many times for help with my feet, until now the asking has degenerated into jokes (jokes unreceived, unnoticed but jokes, still -- usually something about a "spa").

They need tender, loving care, as the saying goes. Then reality sets in... you cannot touch the buggers without eliciting a scream or a melodramatic moan that attempts octaves. Even if I manage a good measure of pain control, and keep a hold on my emotions, as well, I cannot bring myself to ask for tender, loving care. It requires definition for Fred, detail, a play-by-play description of what and how and, even, why. It bleeds every bit of the tender, loving care from the process before it begins, so it never, ever... begins.

I want human touch, warmth, sweet-smelling waters, I want to see love of my feet shine in his eyes. Lotions of any sort just incite inflammation, burning, swelling, and the reddest red you've never seen. My feet will spend at least 12 hours emanating unbelievable amounts of heat just from the application of a simple cream. You can feel a force field, a threatening volcano, holding your hand a foot away. Do I exaggerate? No. The words get weird, the words get strange, the attempt to make someone understand ruins language, and makes me an object of ridicule. I've learned to shut up, to make my descriptions brief and ordinary. The weirdness of CRPS interests no one, not even the scientific types who ought to be interested in accuracy. I could tell a researcher that my pain level was an 8 or 9 out of 10, which would caused a brief raised eyebrow of disbelief or I could calmly explain:

What's the pain like? Like a thousand tiny paper cuts, never cleansed, reopening with every step. Like scrubbing the kitchen floor and ammonia spills onto an open wound. Like Fourth of July sparklers spitting through my foot and leg. Like a Kansas City hail storm raging through my foot. Like Dante's words in The Inferno when he wrote [my pain is] "….ever burning, but never consumed."
Not my words, obviously, being so circumspect and free of obscenity. It's a description I ran into while grazing around the RSDSA website, choosing to expose my cynical, nasty self to a section called "Stories of Hope." The quote is from one Kathleen Campbell, M. Div, in a fine piece called "Transformation and Hope—The Means to Recovery." It leaped off the page, buried as it was in cool, pastoral prose, and that levelheadedness one assigns to people who counsel others with all expectation of success. I routinely beg CRPSers not to talk about feeling doused with gasoline and set on fire... but not entirely for the reasons you probably assume! Mostly, it's because few of us have had the experience, though we all share dreams of self-immolation, flirting with a notion of martyrdom just to elevate this trashpile of an experience to something with a more ennobling history.

Thích Quảng Đức in the full photo of his self-immolation,
 in protest of South Vietnam's
Roman Catholic government's persecution of Buddhists, during which
he remained perfectly still.
It was a Pulitzer Prize-winning photograph by Malcolm Browne.

Over the ten years I've "had" CRPS, I've managed to hem in and refine my verbal descriptions of CRPS pain, except, as you, Dear Reader. can attest, for the pages of this blog.

"It's Hell," I say.

I don't suppose any of us really share a clear notion of what Hell is like, but I've noticed that following its mention, the eyes slightly lose focus, and there's often a flicker of fear.

And I've yet to be made fun of for saying it.

But I'd rather the medical types listen to the fine details:  though the right leg is more edematous, and the pain deep and throbbing, extending from inside the right prosthetic hip to the tips of the twinkling toes, and is covered with strange outbreaks, sometimes blisters -- it is the left leg and foot that cause me to issue regular invitations to Do-It-Yourself Amputations and Bar-B-Ques.  The left leg's pain is intolerable and usually the instrument of those God-damned spasms.

See?  It's best not to allow even the specialists to query one's pain.  The truth?  It's not that they cannot "handle the truth..." It's just that no one can sit quietly in the company of, in the contemplation of a personal Hell.

Still there?

If you are, don't blush or get over-emotional, but I love you.  (Fat chance that I'll admit it in the morning...)

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

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

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

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

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

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

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

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

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

The stupid camera's battery died.

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

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

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

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

"this love is stronger..."

Dominic Balli - Daisy's Song Live 2012
Published on Mar 30, 2012
by dominicballi

When that storm comes
Like a hurricane
And the sun seems far away

We will not fear the wind
We will not fear the waves
I can feel your calm within

When this life is shaken
By ragin' seas
We are not gon' be afraid

So if ya walk on waves and wind
Then hold my hand and I'll walk again

This love is stronger than the blood that beats my heart
This love is deeper, than the pain of all these scars
This love goes farther than the hope in answer's arms
This love is stronger
It's strong enough for me

You lived our sorrows,
Befriended all our pain
All that we might rise again

You stole my sickness,
Rested in my disease
All that I might rest in thee

And you alone bring healing,
And for you I'll wait
But we are not gon' be afraid

This love is stronger than the blood that beats my heart
This love is deeper, than the pain of all these scars
This love goes farther than the hope in answer's arms
This love is stronger
It's strong enough for me

We may be crushed but we are not ever forsaken
We may be struck down but we are not ever destroyed
Then when that fire comes to shine through me your glory
We are not gonna be afraid