This 1986 Press-Register article about me, Jamie and Mom, especially Jamie, surviving the rare disease, was digitized by my Aunt Nancy in Virginia. Thank you. Mom gave me permission to post this here. It’s so old the newspaper was still called the PRESS-REGISTER! Back then the medical knowledge and approach to mitochondrial myopathies was much … Continue reading “1986 Mobile Press-Register Article: on specialness and surviving”
Ebola hemorrhagic fever affects much of the mammalian family tree: its spread should make us remember our intimate connection with other mammals and the environment All animals sustain themselves on an ecological tightrope of sorts, delicately balancing so many needs, including water, food, space and safety, all tied to the habitat they live in. You … Continue reading “Ebola outbreak directly related to our cousin mammals, environmental destruction”
Nick Analysis: Focus on Long-term Policy Choices This attack ad put out by “The Agenda Project,” an org that apparently exists solely to place anti-GOP TV spots, is aimed at the electorate voting in the upcoming decisive midterm races for House and Senate. And it is unique in several ways. Most obviously, the ad is … Continue reading “Public Health Back on the Frontburner with Ebola Panic”
My Mom Taught Me – Subvert The Dominant Paradigm remember to turn the subtitles on. [my shirt says: FREE OUR PEOPLE BIG APPLE ADAPT] When Alejandra mentioned to me that even Raul, like me one of two brothers with an uber rare muscle mitochondrial thing, on a ventilator full time and an awesome advocate too, went ahead … Continue reading “The ADAPT Ice Bucket Challenge: An #IceBucketChallenge for Community Inclusion! /memeHijack”
Part 4 of 4 of the series When Life and Death is “A Matter of Policy” For part 2, I wrote an overview of some of the bad things that have occurred when people in medical settings follow policy strictly even when it leads to horrible consequences, or in the case of Eric Garner, they … Continue reading “Diamonds in the Rough ‘n Tumble Webternets: What Med-people of Conscience Are Blogging (Part 4/4)”
Part 3 of 4 of the series When Life and Death is “A Matter of Policy” In part 2, I examined some of the bad things that can happen when people in medical settings apply “the rules” strictly, unmodified by the patient involved or the dictates of conscience. Now I’ll look at the what and why … Continue reading “Human Nature, the Tendency to OBEY, Bad Incentives, and the U.S. Medical System (Part 3/4)”
Part 2 of 4 of the series When Life and Death is “A Matter of Policy” Annnnnnnnnd we’re back… in part one of this series, I detailed one policy driven by No Discernable Medical Purpose (NDMP), and that’s the “no foreign ventilator” policy hospitals have, affecting me in the past and maybe at points in the … Continue reading “Paramedics, the VA, and Eric Garner: When Deference to Authority Goes Horribly Wrong (Part 2/4)”
Part 1 of 4 of the series: When Life and Death is “A Matter of Policy” As I mentioned recently in the quasi-mission statement of the blog, I create bloggings to ask the right questions, to illuminate the unseen issues facing us ignored vulnerable groups, or that’s the goal. Within that is the idea that … Continue reading “Medical Bureaucracy: Switching Your Ventilator “Because Policy” (Part 1/4)”
I’m a bit late on this one… the holiday season’s crowding in on us, and soon people will consider it winter instead of fall, but I want to cover this anyway since few know there are autumn seasonal fruits. The source for this, primarily, is the Greatist.com list 19 Seasonal Fruits and Veggies to Eat … Continue reading “Recommended Seasonal Fruits for Autumn”
Summer 2013 This year from June to present (mid-August) I’ve been deep in the diagnostic jungle, repeatedly going back to Columbia Presbyterian hospital in hopes of answers, a diagnosis, a treatment, anything… and I’ve written a series of long Facebook posts/epic mito updates, trying to make sense of life, the universe and everything as we … Continue reading “A Summer of Metabolic Disease-related Updates…So Far”
It’s a new world, and those of us who have rare disorders are able to connect with and advise each other like never before. For me and my brother Jamie, the rare disorder is mitochondrial myopathy, and back in 1985 we were told we were among JUST 24 cases identified worldwide of what was then … Continue reading “Journeys with mitochondrial disease”
People in chronic pain need help, more options, more understanding. [the Institute of Medicine (IOM) report Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research] Issued at the request of Congress as part of President Obama’s health reform legislation, the report calls for a “cultural transformation” — an attitude shift on … Continue reading “Senator Schumer, Hands Off Our Meds Please”
Raw Food Police: When Government Won’t Even Let You Choose What’s For Dinner This is the ultimate unacceptable act by a nanny state+police state gone awry. Police Begin “Guns Drawn” Raids on Organic Food Stores in California LA Times: Raw-food raid (features actual surveillance video of the police storming an organic grocery store, pointing guns … Continue reading “When Government Won’t Even Let You Choose What’s For Dinner”
My other half and I have been playing and singing this ode to anesthesiologists (called anaesthetists in Britain) for over a week now! It’s really a classic parody! Video available in HD: My favorite lyrics from the song (sung to the tune of Total Eclipse of the Heart) are: ’cause we sometimes check the screen … Continue reading “This Song Has Been Stuck In My Head For Over A Week!”
Once upon a time, I was sitting in class at Spring Hill College, and overheard some pre-class chatter that included a girl mentioning that she worked as a “pharmacy technician” at the CVS Pharmacy my family and I frequently used. Given that this particular girl was not a day over 20, and was about as … Continue reading “Are Pharmacies Operated By 19 Year-Old Girls Safe?”
I’ve inadvertently stirred up some shit controversy at one of the major medical blogs, Happy Hospitalist (a hospitalist is a relatively new term for a doctor specializing in the care of hospitalized patients). Don’t get me wrong, this story is not black and white; there’s plenty of value in much of what “Happy” writes, I’ve … Continue reading “Nick And The Not So Happy Hospitalist”
Congratulations, Regina Benjamin!! I couldn’t think of a better candidate for Surgeon General than Dr. Benjamin, and I was surprised and pleased that someone from my old hometown that I am familiar with hit the big-time! Dr. Benjamin works in a clinic in Bayou La Batre just south of Mobile, Alabama (where I’m from). As … Continue reading “Alabama’s Own Regina Benjamin, Advocate For Nick’s Crusade, Named Surgeon General Of US”
I’m on Tylenol 3 with codeine. I’ve used it daily since the horrifyingly botched L-rods surgery in 1991 left me in serious pain. I try not to complain, and keep taking the codeine on my schedule to keep the persistent metal-on-bone pain under control. I’ve been reluctant to go to heavier narcotics, and when they … Continue reading “Opioid-Acetaminophen Combination Painkillers. Easier to Get, Also Easier to Destroy Your Liver”
Last Friday, I was on the Medicare Part D(rugs) web site (which itself is possibly a conspiracy to break the spirit of the elderly and disabled, and make us give up on life) tabulating my medications and their costs. While crunching the numbers, I found that (as Mom had faced when I was living at … Continue reading “Beware of “Evergreening”: The Pharmaceutical Scam That Could Cost Your Family Thousands”
Instead of PAYING THE RENT to the rightful landowners, the White American government stole all the Indians’ land, and now that we control everything, we deny adequate health care on reservations and let them suffer and die. According to this AP story, the U.S. spends more on health care for FELONS in federal prison alone … Continue reading “Native Americans Denied Health Care By Grossly Underfunded IHS”
My last post on swine flu paranoia got some responses. Here’s why I think they are wrong. First, Eric: While I agree with the content of this article, I disagree with the intent. Wearing a mask may not be very helpful in keeping you from catching a disease, but it is quite effective at helping … Continue reading “No, Really, Swine Flu Is Not A Threat”
The hysteria over swine flu has spread much faster than the virus itself. People as far away from the disease as Malaysia and Spain are donning surgical masks in public. In Mexico City, the epicenter of the outbreak, troops are fanning out all over the city to give commuters surgical masks. The problem is, SURGICAL … Continue reading “Stop Wearing Surgical Masks, It Doesn’t Protect Against Swine Flu”
New York City’s hospitals, already strained and overcrowded, are experiencing a spree of closings, felled by the economic crisis. St. John’s Queens Hospital and Mary Immaculate Hospital have gone bankrupt and boarded up the entrances. This leaves Queens-dwellers with few options, and those few options in an awful overcrowding situation. “It’s a real failure of … Continue reading “More NYC Hospitals Lost To Economic Crisis”
As I wrote in my last post, hospitals are dangerous. Doctors often don’t believe the patient, don’t listen and screw up. There are nearly unlimited ways hospitals can make mistakes; I even can’t count how many times I’ve been harmed. You can’t just sit back, relax and say “oh, I’m sure they know what they’re … Continue reading “Hospitals Are Very Dangerous Places”
Two weeks ago I detailed the government’s offensive, destructive policy of slashing Medicaid in my post, Vigorously Insisting On A More Perfect Union: Fighting Cuts, Demanding Universal Health Care. But last year and the year before that, I was blogging in posts like this, about the cuts to Tennessee Medicaid, the largest cuts in … Continue reading “More About Culling of the Sick in TN. Also, Bush Weighs In”