jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)

The HIV Crisis In The Deaf Community

This excellent article highlights big troubles.

Just one story:

A gay Deaf man new to DC attempts to set up an interpreted appoint at a queer friendly clinic; after waiting for 45 minutes he's escorted to a room with a video relay interpreter:

begin quote

All I wanted to do was to set up an appointment at a later date with the doctor and a live ASL interpreter. That’s all I want.

She looked at the note, smiled, and wrote, “We don’t do that here. ASL interpreters are expensive. This is a cheaper alternative.”

I looked at the note, shook my head, “No.” I got the feeling that this was not going to be a “Deaf-friendly” nor “Deaf accessible” and got up and started to leave when she grabbed my arm. I looked at her quizzically with her writing furiously on the note. She wrote, “You do qualify for our services but you have to understand, we can’t afford it.”

I looked at her disappointedly and wrote: “I find it ironic that the HIV-positive community is knowledgeable with the ADA law and uses it to the betterment for the community and yet can’t provide for their own.”

quote ends
Some context: Since Washington DC is home to Gallaudet University, they have a very large and skilled interpreter workforce. Two videos with ASL, captions, and audio )
jesse_the_k: Pill Headed Stick Person (pill head)
My doc just told me about a double-blind RCT study showing combo aspirin & acetaminophen was as effective as oral morphine (and both better than placebo) for post-surgical dental pain.

I'm doing it now and it helps )

jesse_the_k: Due South's Ray Kowalski and Benton Fraser both rubbing their foreheads (dS F/K headache)
This question has popped up many times in the last few years. Obamacare encourages "wellness programs," employer-sponsored activities which some disabled people simply can't do. So what's the law?
quote begins
There is a new conflict in town: employer-sponsored wellness programs and the Americans with Disabilities Act (ADA). On several occasions the EEOC has sued employers for allegedly forcing compulsory and intrusive wellness programs aimed to improve the general health of employees. Is there a possible compromise for employers to foster employee wellness while avoiding unlawful medical inquiries?
quote ends

You can hear an expert lawyer's understanding and pose questions
November 18, 2015 2:00pm to 3:30pm eastern time
Use this link to register

The regional ADA centers provide "webinars" open to all on many topics. Archives here:

signal boosts welcome
jesse_the_k: Due South's Ray Kowalski and Benton Fraser both rubbing their foreheads (dS F/K headache)
Been a while, but I've been amusing myself, as well as intermittent low bits. Turned my back on Facebook, abandoned Twitter after the SDS conference, spending way too much time on MetaFilter, which is beginning to annoy me in useful ways, as well as doodling away a happy hour on Tumblr posting nothing. Reading actualfax books—paper as well as e—and fanfiction, of course. Here's a sprinkling of things I've stumbled across. Ask me anything (as they say) in the comments and I'll bloviate.

I've worked as a freelance calligrapher, typesetter, and graphic designer. This cartoon beautifully, and painfully, captures the continual teeter-totter between "being true to your own self" and "getting paid"

I've been having more difficulty understanding speech, especially at noisy places like cons (use your mics!) and restaurants. I've also had a strange two-tone mechanical humming in my ears for the past year or so. Okay, time for a hearing test. Mostly painless: put on these headphones, play noise in one ear and words in the other, parrot back the words. But then there was
non-consensual penetration of body cavities )

That was a lesson in how to alienate prospective patients. It makes me wonder what in hell medicos mean when they say, "this will be uncomfortable, but let me know if it hurts"? Is there some level of pain which reliably causes a reflex response in humans, and therefore docs can ignore unreliable information like "Oww! That hurts! Stop that! NO."? I know that enough pain makes me pass right out. Or say if I vomit, does that mean I've crossed the line from "uncomfortable" to "hurts"? How about if I curl up on cool bathroom tiles? Or maybe when I sandbag myself with microwave hotpacks? I'm just working back from the "pain behaviors" I've demonstrated when it's hurt too much for me at home.

Anyway, the exam result is: I have

  • excellent hearing in optimal conditions (cool)

  • difficulty "hearing in noise" (yeah, that's why I was there)

  • tinnitus (Checking just now at HearingLossHelp druglist (PDF), I'm taking three meds known to cause tinnitus in some people. Huh and

  • Hyperacusis

She says wearing 29dB earplugs only makes the hyperacusis worse. (I wear them swimming and when I'm on the bus.) She's making "musician's earplugs" for me which dampen all sound equally across the noise spectrum which should "take the edge off" of the loudness of things.
jesse_the_k: Pill Headed Stick Person (pill head)
"Supplements" are substances which we can use like drugs. In the U.S. and Canada, supplements are not regulated for purity or efficacy: we must trust the suppliers to ensure these important qualities. When I started using them, my pharmacist was also learning about supplements, and we spoke at length about this issue. She claimed to have researched the best manufacturers. She chose (and therefore I used) "Nature's Bounty."

Supplements have been part of my treatment plan for a long time: they include fish oils, vitamin D3, mysterious Chinese herbs compounded by my acupuncturist, cranberry powder, and a magnesium/riboflavin/feverfew tab called Migrelief (which really relieves my migraines). I've periodically tested their efficacy by stopping, assessing, and restarting them. They help. If that difference is founded on the placebo effect, I don't care.

Last month I had an experience which jerked me out of that happy place.
I mentioned to my p-doc that I was having trouble staying asleep. She suggested I try melatonin. I asked how much; she said, "knowing you, start small." I was pleased to find a liquid version with a marked dropper so I began with 0.25 mg equivalent. And that was enough! Lovely stuff: easy sleepiness within 20 minutes, stayed asleep with energetic and creative dreams, woke refreshed 8 hours later.

When I traveled the following week, I forgot my liquid melatonin. I went to a health food store and discovered the smallest tablet was 1mg, four times as large. I was able to halve it without totally crumbly results, so I thought I'd sleep like a lamb at twice my previous dose. But no—ZERO effect. Was this due to dosing sublingually versus through my digestive system? I kept doubling the pill dose with no result. When I made it home, I was taking 5mg (the typical dose available) with no pleasant sleep. Switched back to 0.25 liquid and slipped into the ocean like a sleepy seal.

The moral of the story: I don't know if a supplement isn't working because it's not effective in my body, or because there's not enough, or not even any, of the active ingredient in the bottle I bought.

And then this week, propinquity! A fascinating article in BioMedCentral:
DNA barcoding detects contamination and substitution in North American herbal products
Newmaster, Grguric, Shanmughanandhan, Ramalingam and Ragupathy

It provides extensive detail on how unreliable supplement labels can be, from a Canadian group with zero ties to the supplement production industry.

So, supplement users, how do you ensure their quality?
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (CKR fuck no!)
Probably news to nobody reading here, but it was such stunning evidence of greed in the hospital industry I just had to memorialize it.

This is from 17 May 2013 NYTimes article on the East Coast hospitals with the highest billing and payment. There's such a disconnect between what's charged and what's customarily paid that one must account for both. The users who pay the most are the uninsured; Medicare pays the least, and most insurance companies negotiate something in-between. Bayonne Medical Should be Bayonne Financial )
This is like buying a towing company, distributing your equipment to all roads in town, and then digging ditches across the road to guarantee business. As [personal profile] laceblade would undoubtedly say, This shit is wrong!

ETA to fix erroneous time travel
jesse_the_k: Cartoon of white male drowning in storm, right hand reaching out desperately, with text "Someone tweeted" (death by tweet)
ETA: Cut. Sorry about spamming your droll. :(

Let me offer you a link paté -- I've actually read all these stories, and wanted to share their greatness with you:

Link Paté )
jesse_the_k: Lucy the ACD snuggles up against the edge of her cozy dog bed, nose under her leg (LUCY snuggles)
Thanks to sophy, a primary care physician meditates on treating people with chronic illnesses in a letter addressed to us. Looking back on 25 years of good-to-awful interactions with doctors, I peg him "wise."

It's been an unlucky week at our house. Lovely Lucy was walking uncomfortably. She didn't show pain when we pushed & poked her legs. Then we had success with subtracting pain with an ice pack (instead of adding pain with our fingers). Isolated to one leg, we shuffled off to the vet. It's not a ruptured cranial cruciate ligament, but a probable tear. So 5 days of as little movement as possible. First day she was in pain from the vet exam, and basically a stuffed doggy. Second day beginning to be bored. Today she's been nosing me a lot. I was the big meanie who had to take away the squeaky toys she loves to squeeze as she zooms around the couch. Dreading tomorrow.

OTOH, MyGuy is going out to see if he can hit a bucket o' balls; first physical exertion since the surgery.

Monday is the 20th anniversary of the Americans with Disabilities Act, which triggers a stew of emotions. More on Monday, I hope.

Lovely lunch with [personal profile] sasha_feather. I'd looked forward to Salade Niçoise, but the power went out and so did we.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
Still with the polysyllables.

MyGuy's surgery went very well. At his next-day eye check, the doc wanted him to report which lines he saw; MyGuy was able to not only see them but read them. Yay! He look like he's been kick-boxed by a particularly aggressive badger – deep purple restricted to a tiny area. If I posted the results to [community profile] shutterspeed I might induce vomiting.

He's having very little pain – yay*yay. He's off work for a week but doesn't have any impending deadlines – yay*yay*yay.

MagicB took me out to the grocery store on Friday. I made the huge mistake of relying on the store's scooter, instead of bringing my own chair. Operating that scooter in the (noisy crowded) store was a lot like piloting a barge in whitewater. Plus! It had a built-in backup alarm. (Which probably makes some sort of sense for very occasional users.) It consumed every last bit of executive functioning in the already low pool. But we've got enough to eat.

So, thanks all for your kind thoughts – they clearly worked!
jesse_the_k: Photo of baby wearing huge black glasses  (eyeglasses baby)
My latest excuse for not posting arrived around 4:30 this morning. MyGuy had a vitreal detachment in his weaker eye around 6 months ago. The eye doctor counseled "watchful waiting"; the unhappy sequel he was watching for happened this morning: a retinal tear. He will have scleral buckle surgery plus a vitrectomy tomorrow AM. Then they'll create a gas bubble to support the mended retina -- that's what Pneumatic Retinopexy means. He may have to spend the next couple days with his face down.

I hope for the best! The good news is this experience has introduced my dancing tongue to a host of polysyllabic words.
jesse_the_k: Photo of baby wearing huge black glasses  (eyeglasses baby)
by David Small
W.W.Norton, 2009

This 300-page graphic novel is a shatteringly creepy memoir. David Small's physician father, following the medical wisdom of the time, irradiated him many times for "sinus trouble." A colleague noticed a growth on his neck at age 11, but the family dynamic was so nonfunctional that no doctor checked this out until age 14, when the tumor, his thyroid and one vocal fold were removed.

The family didn't tell him that he'd been treated for cancer. That silence is mirrored in his own inability to speak until the vocal fold regrew some 15 years later.

Yeah, my mind boggled too. This beautifully drawn book really does evoke Hitchcock and Orson Welles in story and presentation. So the author's self-aggrandizing in this YouTube video isn't hyperbolic.


May. 6th, 2009 04:08 pm
jesse_the_k: Slings & Arrows' Anna sez: "I'll smack you so hard your cousin will fall down!" (Anna smacks hard)
[-same as text above with other folks' comments-]
jesse_the_k: Slings & Arrows' Anna sez: "I'll smack you so hard your cousin will fall down!" (Anna smacks hard)
In this week's Science Times, Dr. Pauline Chen meditates on her own reluctance to use interpreters, as well as a recent study in the Journal of Internal Medicine.
“[...] physician-patient communication is driven by the physician’s need for patient input rather than by the patient’s need to communicate. Communication is viewed as something that is supposed to change decisions that the doctor can foresee. So the use of interpreters may have more to do with how we think about communication with our patients and less to do with our views on interpreters, limited English proficiency patients or even time pressures.”
Chen provides a vivid example of the unquestioned medical assumption that what the doctor has to say is more important than the patient's needs. She decides her ability to ask Dolor? and that patient's response of thumbs'-up or thumbs'-down is adequate for "routine rounding" (i.e., post surgical check-ins).

Chen is a transplant surgeon; the patient she's routinely rounded has just had a liver transplant. As anyone who's been hospitalized for illness or injury will readily understand, there's nothing quite so intimidating, so important as those 5 minutes a day when you actually get to communicate with the doctor. This is thoughtless privilege at its most frightening. The JIM study concludes:
Although previous research has identified time constraints and lack of availability of interpreters as reasons for their underuse, our data suggest that the reasons are far more complex. Residents at the study institutions with interpreters readily available found it easier to “get by” without an interpreter, despite misgivings about negative implications for quality of care. Findings suggest that increasing interpreter use will require interventions targeted at both individual physicians and the practice environment.
The comments are interesting, if ill-informed. There's the predictable "don't get sick in a language you don't know," but most get stuck in two issues—cost and availability—for which the study controlled.

Do readers not really read? The willingness people have to defend the indefensible fascinates and repels me. Dr Chen has made a habit of bravely admitting hard realities in a national newspaper; the commenters largely want to give her a pass.

Out Loud

Feb. 28th, 2009 08:07 pm
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
[ profile] kestrell has a wonderful post about reading out loud (Reading Allowed)
The truth is, we do not live in a culture which gives people a lot of opportunities to read aloud, that is, to practise freely using their voices (or perhaps that should be, to free their voices through practice).

Radiolab is a witty, rigorous and beautifully produced radio show. It's an intersection between "This American Life" and SCIENCE magazine (and better than either).

The December 2008 episode Diagnosis tells five stories where things are not exactly what they seem. Along the way, Jad Abumrad and Robert Krulwich play around with soundscapes and blew my little brain.

They explore the social construction of both disability and disease. A father home-schools his son because he's ruthlessly teased in school because of his "oddness." He gets a diagnosis at age 28, late enough to escape the no-expectations non-education he might have received via sped. Doctors believe they're seeing pictures of moods on fMRIs. But in the 1920s, they were absolutely sure they knew the cause of SIDS, and confidently provided treatment that caused disease in healthy people and did nothing to prevent cot death.

According to MyGuy, who spent 18 years trying to work with doctors on quality issues, the med student's motto is: Sometimes wrong, never in doubt.

I know I'm particularly bitter on this topic.

My mother had difficulty carrying a pregnancy to term, and her OBGYN gave her DES, because he thought it would prevent miscarriage. It didn't, but it does make me more vulnerable to vaginal cancer (and more prone to infertility, which never bothered child-free me). At least Mummy was informed; thousands of women in the midwest were told they were getting prenatal vitamins when they were actually taking part in a drug study without consent.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (insane smarty)
As reported in this AM's New York Times, Bailout Provides More Mental Health Coverage: some politically savvy folks managed to include a very important car to the $7,000,000,000 "socializing risk" train: "mental health parity."

Currently US health insurers can and do arbitrarily limit coverage of mental-health treatments (talk therapy, drugs, or hospitalization). The parity bill means insurers must provide equal coverage for mental and physical illnesses. The article claims implementation at start of 2010. I'm betting there will be many plenty court cases before then.

One caveat: "A breakthrough occurred when sponsors of the House bill agreed to drop a provision that required insurers to cover treatment for any condition listed in the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association." Employer advocates complained that treatment should not be mandated for some conditions that DSM mentions, such as "caffeine intoxication" or "jet lag."

Revisions to create DSM-V are scheduled in 2012.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (on guard)
This is Your Brain on Music
The Science of a Human Obsession
Daniel J Levitin
ISBN 0-525-94969-0
Dutton, 2006

Eight out of ten stars.

A delightful, page-turning introduction to the neurological basis of musical performance and appreciation. I love "scientist-for-a-day" books, which explore a topic in enough depth to surprise and educate me, and are aimed at the curious lay reader who lacks calculus, chemistry, or other deep scientific fundamentals. I have the flattering illusion that I actually understand the material as I read it, and retain some high points. and you'll read about them in the cut )
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (insane smarty)
Some days it's not worth chewing through the leather restraints ... but then there's a story like this on NPR:

Supreme Court Hears Schizophrenia Case

The "Day to Day" hosts talk with a Supreme Court reporter, and then with a university professor who has been diagnosed as schizophrenic.

"Nothing about us without us!" was a cry first raised by South African disability rights campaigners.
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (insane smarty) is a traditional-medicine oriented, carefully-edited site offering mandated continuing medical education to docs, nurses and such (as well as material presented more simply for civilians).

I've lived with fibromyalgia for almost 3 decades, and observed with varying dismay and amusement as it's been dismissed and then, reluctantly "accepted" by mainstream medicine.

Medscape has recently posted a continuing medical education program -- pitched at practioners -- that summarizes the latest research on fibromyalgia. For those of us who've been struggling with chronic pain, the biochemical details may actually be comprehensible, and it's definitely worth a careful read. It includes an overview of pharmacological treatments, dividing drugs into those with strong, moderate, weak and no benefit.

Fibromyalgia: Defining the Disorder and its Diagnostic and Treatment Approaches

I'm not endorsing the article, but knowledge is power, and it might prove helpful for a doc who needs support in treating you seriously.

Many things were new to me... )

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Jesse the K

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