Several recent studies have brought to light some disturbing issues regarding patients, medical providers, and the relationships between them. These studies underscore the importance of positive relationships between patients and providers, and how important it is that healthcare consumers feel empowered to advocate for themselves.
Showing posts with label being a patient. Show all posts
Showing posts with label being a patient. Show all posts
Wednesday, September 19, 2012
Tuesday, September 04, 2012
Martine Ehrenclou and "The Take-Charge Patient"
Martine Ehrenclou is a well-known and talented writer whose books "Critical Conditions" and "The Take-Charge Patient" have received well-deserved attention and praise. I have been happy to become acquainted with Martine through our connections on social media, and I'm happy to provide this review of "The Take-Charge Patient", published by Lemon Grove Press in 2012. As always, I received no compensation for this post other than a review copy of the author's book.
Thursday, August 28, 2008
My Body, Digitized: Yet Another MRI
Ah, the whir, buzz, beep and drone of the machine almost drown out all thought. There are no lights, only the sensation that giant magnets embedded in the walls of this machine straight out of science fiction are taking cross-sectional views of my thoracic spine. How nice that I'm not actually being physically sliced in 1 mm-thick pieces. Rather, a virtual model of my spine is being transmitted to a computer that will deliver to my orthopedic surgeon and primary doctor a visually impactful set of images compressed onto a CD-ROM. My body, digitized.
I am once again squeezed into a cold plastic and metal cylinder, my nose just an inch or two from the smooth inner contours of the tube. I have removed my wedding ring, glasses and earring (I am pierced only on the left, dear Readers), and I'm wearing my own t-shirt (white, v-neck, 100% cotton, purchased at JC Penney's, if you must know) and a ridiculous pair of flimsy blue cotton pants with a fly that won't close given to me by the radiology tech. Having forgotten to wear socks (it's hot out and I came to the hospital in sandals and shorts), the aforementioned and very kind tech wrapped my feet in a white blanket and covered me with a second blanket in an effort to make me feel at home and cared for, not to forget the (completely ineffectual) orange earplugs placed in my tender ears. The efforts at creating some semblance of comfort were appreciated, and I did feel cared for and at home (well, as at-home one can feel in a cold room filled with computers, blinking lights, a gigantic magnetic donut, and switches and gauges of unknown purpose).
I have had several MRIs over the last few years, my first one immortalized in this post ("An MRI for I & I") back in 2006. At that time, apprehensive but curious about the machine and the experience of the tube (and the notorious noisiness of the test), I experienced what I can only call a medicotechnological (yes, it's really a word) epiphany.
A lifelong fan of electronic music, some of which many people might actually characterize as noise, I found the cacophony, drones, and loud beeping of the MRI magnets both intellectually and musically interesting. At that time, I had been listening to music by the band Matmos, their most famous recordings being music made from electronically recorded samples of noises made during medical procedures such as liposuction. So, to make a long story short, the almost onomatopoeic "noise" of the MRI's inner workings was actually like an electronic symphony as I lay in my 21st century sarcophagus, and , truth be told, this time my reaction and experience were no different. In fact, I eventually relaxed so much inside that friendly plastic cylinder, I actually had a nap during the last sequence. I guess I figured I had to lay absolutely still anyway, so why not catch a few winks on my insurance company's nickel? (Thanks to my insurance company's largesse and my doctor's clinical astuteness, I take Mirapex for fairly severe Restless Legs Syndrome and Periodic Limb Movement Disorder. Good thing, or trying to lay in that tube totally still may have looked---and felt---quite different.)
Based on my experience with both MRIs and electronic music, I would propose that, rather than medicating anxious and claustrophobic patients with Ativan or Valium prior to MRIs and other such noisome procedures, patients should be enrolled in a four-week course of "Electronic Music Appreciation". Following a thorough introduction to Brian Eno, Robert Fripp, John Cage, Philip Glass, Matmos, Kraftwerk, and The Boards of Canada, the would-be unhappy, claustrophobic and traumatized MRI recipient would be transformed into an appreciative and well-adjusted patient eager for a repeat MRI at a moment's notice. (Come to think of it, perhaps insurance companies would balk at actually making the MRI experience more enjoyable. After all, if patients aren't rattled by the noise and close quarters, they might demand that their doctors order more MRIs and CT Scans so that they can once again have the ultimate sonic and musical experience.
Anyway, if you're planning to have an MRI yourself, please feel free to email this writer for a primer on electronic music, and for a friendly reminder to always wear socks (preferably clean) when going to the hospital. If, for some reason, you're afraid that electronic music appreciation is simply not for you and there is virtually no way on Earth that you would actually enjoy (or even revel!) in the knocking and whirring of the giant magnets rotating around you in a plastic donut at 100 miles per hour, simply go your doctor, tell him you're claustrophobic, and say "Make mine a Valium, doc".
I am once again squeezed into a cold plastic and metal cylinder, my nose just an inch or two from the smooth inner contours of the tube. I have removed my wedding ring, glasses and earring (I am pierced only on the left, dear Readers), and I'm wearing my own t-shirt (white, v-neck, 100% cotton, purchased at JC Penney's, if you must know) and a ridiculous pair of flimsy blue cotton pants with a fly that won't close given to me by the radiology tech. Having forgotten to wear socks (it's hot out and I came to the hospital in sandals and shorts), the aforementioned and very kind tech wrapped my feet in a white blanket and covered me with a second blanket in an effort to make me feel at home and cared for, not to forget the (completely ineffectual) orange earplugs placed in my tender ears. The efforts at creating some semblance of comfort were appreciated, and I did feel cared for and at home (well, as at-home one can feel in a cold room filled with computers, blinking lights, a gigantic magnetic donut, and switches and gauges of unknown purpose).
I have had several MRIs over the last few years, my first one immortalized in this post ("An MRI for I & I") back in 2006. At that time, apprehensive but curious about the machine and the experience of the tube (and the notorious noisiness of the test), I experienced what I can only call a medicotechnological (yes, it's really a word) epiphany.
A lifelong fan of electronic music, some of which many people might actually characterize as noise, I found the cacophony, drones, and loud beeping of the MRI magnets both intellectually and musically interesting. At that time, I had been listening to music by the band Matmos, their most famous recordings being music made from electronically recorded samples of noises made during medical procedures such as liposuction. So, to make a long story short, the almost onomatopoeic "noise" of the MRI's inner workings was actually like an electronic symphony as I lay in my 21st century sarcophagus, and , truth be told, this time my reaction and experience were no different. In fact, I eventually relaxed so much inside that friendly plastic cylinder, I actually had a nap during the last sequence. I guess I figured I had to lay absolutely still anyway, so why not catch a few winks on my insurance company's nickel? (Thanks to my insurance company's largesse and my doctor's clinical astuteness, I take Mirapex for fairly severe Restless Legs Syndrome and Periodic Limb Movement Disorder. Good thing, or trying to lay in that tube totally still may have looked---and felt---quite different.)
Based on my experience with both MRIs and electronic music, I would propose that, rather than medicating anxious and claustrophobic patients with Ativan or Valium prior to MRIs and other such noisome procedures, patients should be enrolled in a four-week course of "Electronic Music Appreciation". Following a thorough introduction to Brian Eno, Robert Fripp, John Cage, Philip Glass, Matmos, Kraftwerk, and The Boards of Canada, the would-be unhappy, claustrophobic and traumatized MRI recipient would be transformed into an appreciative and well-adjusted patient eager for a repeat MRI at a moment's notice. (Come to think of it, perhaps insurance companies would balk at actually making the MRI experience more enjoyable. After all, if patients aren't rattled by the noise and close quarters, they might demand that their doctors order more MRIs and CT Scans so that they can once again have the ultimate sonic and musical experience.
Anyway, if you're planning to have an MRI yourself, please feel free to email this writer for a primer on electronic music, and for a friendly reminder to always wear socks (preferably clean) when going to the hospital. If, for some reason, you're afraid that electronic music appreciation is simply not for you and there is virtually no way on Earth that you would actually enjoy (or even revel!) in the knocking and whirring of the giant magnets rotating around you in a plastic donut at 100 miles per hour, simply go your doctor, tell him you're claustrophobic, and say "Make mine a Valium, doc".
Saturday, March 31, 2007
And a Cast of Thousands.....
Over time, I have come to share my own health challenges relatively frequently here on Digital Doorway, from the humbling experience of being a patient, living with Multiple Chemical Sensitivity, long-term struggles with depression, and adventures with chronic pain. As my own healthcare becomes more complex and challenging, my personal, experiential understanding of my patients' struggles also becomes more keen.
As I have related before, the majority of my patients have multiple co-morbidities, many symptoms of which mimic, exacerbate, or otherwise interact with the other co-existing conditions and symptom constellations. The presence of multiple chronic illnesses and related symptoms generally leads to the individual in question navigating an increasing number of providers and medical specialists. As I have described in previous posts, I spend a great deal of my professional time assisting my patients with coordinating their complicated care, often serving as the liaison and conduit of information between multiple providers who may or may not freely choose to communicate clearly with one another in a timely manner. In many ways, I am the outside agent who helps the left hand of the medical treatment team to know what the right hand is doing. When there are more than two hands---which is generally the case in most instances---my work is multiplied, as is the room for mistakes, miscalculations, and poor (or absent) communication. The resulting day-to-day action draws on both the worlds of tragedy and comedy, with no lack of soap opera intrigue for those who like that sort of thing.
Lacking my own care manager vis-a-vis my multiple medical challenges (as do the majority of patients, really), I juggle multiple appointments, tests, and various treatments. Reviewing the litany of upcoming medical appointments in my Palm Pilot recently, I was struck by the growing cast of professional characters who I have enlisted in my own production known with the working title of: "Keith's Health Care; Being A Play With Too Many Acts, An Ever-Increasing Cast of Characters, and Far Too Few Intermissions." Most of the cast play themselves quite well, needing precious little coaching from the wings. The trouble these days, though, is that the curtain seems to always be up, and the plot just never gets resolved. Who wrote this thing, anyway, and where did that orchestra come from?
Nurse Keith----played by none other than Nurse Keith (Who else could do it? Maybe a cross between Ben Stiller and Woody Allen?)
Primary Care Physician----important and consistent, sometimes seems superfluous
Psychotherapist----newest cast member, but sure to be a star
Oral Surgeon----hopefully making only a brief cameo, never to be seen again
Physiatrist----kind and professional but limited in scope, may fade to background
Psychiatrist----useful and insightful; only makes an appearance every six months, thank God
Dentist----infrequent cast member, as well, but still important, along with rotating hygienist
Environmental Illness/MCS Specialist MD----the indispensable cornerstone of current care team
MCS Doc's Nurse----very important resource for information and support
Gastroenterologist----will debut in May, hopefully for a very brief appearance
Neuromuscular Therapist---someone I always look forward to seeing, even when it hurts
Chiropractor----currently on the back-burner, but a casting-call may soon be advertised
Acupuncturist----character in development
While the reviews are slow in coming, some positive press has been seen in the blogosphere. Some feel there are not enough holistic providers in the cast, while others think allopathic medical providers should dominate the ranks of the dramatis personae. Parts of the script may need re-working, while some critics have panned the whole effort as self-indulgent and wasteful. Nonetheless, the cast will push forward with the current season, mixing comedy, drama, tragedy, farce, as well as Theatre of the Absurd.
So dear Readers, feel free to add your reviews to that of the others, and join us at any time for another installment in this post-modern journey of human existence. The show runs daily, and admission is, as always, simply a small payment of your precious time and attention.
As I have related before, the majority of my patients have multiple co-morbidities, many symptoms of which mimic, exacerbate, or otherwise interact with the other co-existing conditions and symptom constellations. The presence of multiple chronic illnesses and related symptoms generally leads to the individual in question navigating an increasing number of providers and medical specialists. As I have described in previous posts, I spend a great deal of my professional time assisting my patients with coordinating their complicated care, often serving as the liaison and conduit of information between multiple providers who may or may not freely choose to communicate clearly with one another in a timely manner. In many ways, I am the outside agent who helps the left hand of the medical treatment team to know what the right hand is doing. When there are more than two hands---which is generally the case in most instances---my work is multiplied, as is the room for mistakes, miscalculations, and poor (or absent) communication. The resulting day-to-day action draws on both the worlds of tragedy and comedy, with no lack of soap opera intrigue for those who like that sort of thing.
Lacking my own care manager vis-a-vis my multiple medical challenges (as do the majority of patients, really), I juggle multiple appointments, tests, and various treatments. Reviewing the litany of upcoming medical appointments in my Palm Pilot recently, I was struck by the growing cast of professional characters who I have enlisted in my own production known with the working title of: "Keith's Health Care; Being A Play With Too Many Acts, An Ever-Increasing Cast of Characters, and Far Too Few Intermissions." Most of the cast play themselves quite well, needing precious little coaching from the wings. The trouble these days, though, is that the curtain seems to always be up, and the plot just never gets resolved. Who wrote this thing, anyway, and where did that orchestra come from?
The Cast
(not necessarily in order of appearance)
(not necessarily in order of appearance)
Nurse Keith----played by none other than Nurse Keith (Who else could do it? Maybe a cross between Ben Stiller and Woody Allen?)
Primary Care Physician----important and consistent, sometimes seems superfluous
Psychotherapist----newest cast member, but sure to be a star
Oral Surgeon----hopefully making only a brief cameo, never to be seen again
Physiatrist----kind and professional but limited in scope, may fade to background
Psychiatrist----useful and insightful; only makes an appearance every six months, thank God
Dentist----infrequent cast member, as well, but still important, along with rotating hygienist
Environmental Illness/MCS Specialist MD----the indispensable cornerstone of current care team
MCS Doc's Nurse----very important resource for information and support
Gastroenterologist----will debut in May, hopefully for a very brief appearance
Neuromuscular Therapist---someone I always look forward to seeing, even when it hurts
Chiropractor----currently on the back-burner, but a casting-call may soon be advertised
Acupuncturist----character in development
While the reviews are slow in coming, some positive press has been seen in the blogosphere. Some feel there are not enough holistic providers in the cast, while others think allopathic medical providers should dominate the ranks of the dramatis personae. Parts of the script may need re-working, while some critics have panned the whole effort as self-indulgent and wasteful. Nonetheless, the cast will push forward with the current season, mixing comedy, drama, tragedy, farce, as well as Theatre of the Absurd.
So dear Readers, feel free to add your reviews to that of the others, and join us at any time for another installment in this post-modern journey of human existence. The show runs daily, and admission is, as always, simply a small payment of your precious time and attention.
Subscribe to:
Posts (Atom)