I wish I still lived in Boston 

Lit Crawl Boston – Boston Book Festival
I grew up in the Boston suburbs and graduated from Emerson College when it was still in Back Bay. At 22, I left Massachusetts to spread my wings, moving first to Northern Virginia, then exploring the state New Jersey, eventually settling in Monmouth County (exit 117 😉).

Recently, I’ve felt a strong pull to be back in Boston. Several times during my illness (which started in 2009), different scenarios have been posited for moving back to Massachusetts. The bottom line is I haven’t been well enough to move: all of my doctors are here, and I’ve got a great team – that’s a challenge to put together and it wouldn’t be prudent to start over (especially now that I’m making some progress).

Nevertheless, I still feel the pull of the history and opportunities. I dream of going back, not as an invalid, but ready to make a contribution. My job now is to get well so I can make my dreams a reality. 

2nd Annual Lit Crawl!

  Get ready for a night of literary mayhem and merry making. The 2nd Annual Boston Lit Crawl is Thursday, October 26th from 6:30-9:30pm! This evening of fun is free, and it all takes place along Newbury Street and throughout the Literary District.  

 Check out the schedule and sign up for your favorite activities. 

 P.S. Be sure to add Literary Balderdash, a game show presented by GrubStreet and Brookline Booksmith, to your Lit Crawl itinerary!

https://bostonbookfest.org/festival/lit-crawl-boston-2/?

Advertisements

Word of the Day: Kakistocracy

It’s frightening, because it’s true.

I can speak from firsthand knowledge that living through 11 presidencies of varying degrees of competence (and the occasional scandal or criminality) gives you some perspective on what we are experiencing today. Norman Ornstein, political scientist and resident scholar at the conservative American Enterprise Institute, has lived through 13 of them. What he sees with the Trump Administration is something so unique it needs a special word to describe it, a word that has been out of popular usage for nearly two centuries. The word is “kakistocracy.”

 kakistocracy (English pronunciation: /kækɪsˈtɑkɹəsi/) is a system of government which is run by the worst, least qualified, or most unscrupulous citizens. … It was also used by English author Thomas Love Peacock in 1829, but gained significant usage in the 21st century.

Kakistocracy – Wikipedia

https://en.wikipedia.org/wiki/Kakistocracy

(Continued)

https://m.dailykos.com/stories/2017/10/10/1705723/-The-Atlantic-Confirms-It-We-Are-Living-In-A-Kakistocracy?detail=emaildkre

Word of the Day

A.Word.A.Day
with Anu Garg

mythomania

PRONUNCIATION: (mith-uh-MAY-nee-uh)

MEANING: noun: An abnormal tendency to exaggerate or lie.

ETYMOLOGY: From Greek mythos (myth) + -mania (excessive enthusiasm or craze).

Earliest documented use: 1909.

USAGE: “I humoured him by listening to his stories about all the grandchildren he probably didn’t have. His mythomania, which both terrified and exasperated me, somehow brought us together.” Marie-Renee Lavoie; Mister Roger and Me; Anansi; 2012.

See more usage examples of mythomania in Vocabulary.com’s dictionary.

Essay, Suddenly Seymour 

I had my IV antibiotics earlier today (administered at a local hospital per insurance requirements), came home and slept for several hours, then woke with “Suddenly Seymour” rattling around my brain. Several hours later it’s stuck in a loop. I watched the movie (Little Shop of Horrors), the day of the eclipse, so a week ago yesterday, and hadn’t consciously thought about the song since then. What strange things our brains are!

Though, it certainly would be nice to have someone (compatible and sane) declare him/herself in a ballad. 

One of these days I’ll start dating again… Perhaps I’ll be able to find my (kaboom) Seymour. 

Hurricane Harvey 2017: Texas, Trump, and SMH

I’ve been sharing a lot of information about Hurricane Harvey on Facebook. My heart or a out to everyone in the path. Watching from the area Hurricane Sandy devastated lives, I have seen what destruction can be caused, to individual lives, property, and entire communities. 

The preident’s response, though not a surprise is still shocking to me. 
Over the last year or so I’ve read with interest how Holland manages their water and plans for storm surge like this. I have wondered what citites, states, or federal agencies have taken any of that knowledge into account when planning or allocating resources. This is a fascinating article from June NYT: 

https://www.nytimes.com/interactive/2017/06/15/world/europe/climate-change-rotterdam.html

The two paragraphs quoted below, from a NYT article today, highlight the incongruity of Trump, his denial of climate change, “This very expensive GLOBAL WARMING bullshit has got to stop. Our planet is freezing, record low temps,and our GW scientists are stuck in ice,” https://twitter.com/realDonaldTrump/status/418542137899491328

and his insisting on cutting the very programs he his now praising. For more on this:
http://www.huffingtonpost.com/entry/pres-trumps-foolish-fema-budget-cuts-emergency_us_59a31222e4b0cb7715bfd6ab

“Wow,” he tweeted on Sunday morning. “Now experts are calling #Harvey a once in 500 year flood! We have an all out effort going, and going well!” An hour earlier, he noted, “Many people are now saying that this is the worst storm/hurricane they have ever seen. Good news is that we have great talent on the ground.”

“Mr. Trump did not wait long to start doling out praise. On Saturday, as relief efforts were just gearing up, the president tweeted to the administrator of the Federal Emergency Management Agency, Brock Long, “You are doing a great job — the world is watching! Be safe.” Quoted from:  Trump to Travel to Texas With Torrential Rain Still in the Forecast https://nyti.ms/2vARM5q

Picture from: https://weather.com/storms/hurricane/news/tropical-storm-hurricane-harvey-rain-flood-forecast-texas-louisiana

SMH.

Essay on Lyme and Tick Borne Disease 

A friend sent me this article:

Scientists Have Developed A Shot That Could Offer Complete Protection Against Lyme Disease

https://www.bicycling.com/training/lyme-disease-protection-shot?

Unfortunately, there are two things that make this headline and subsequent article a non-starter for me. 

First, in the past five (or more years), there have been many wonderful medical innovations, “2-3 years out”, that have never been heard from again; second: “The downside, however, is that this shot would not protect from the host of other diseases that ticks carry, including powassan virus, babesiosis, anaplasmosis, Rocky Mountain spotted fever, and ehrlichiosis.” From NIH.gov, “We report here the successful application of MLVA for strain discrimination among a group of 41 globally diverse Borrelia isolates including B. burgdorferi, B. afzelii, and B. garinii.” To expand… One tick may carry many diseases, sometimes for convience called Lyme, but also many other names, I personally like to use “tick borne disease” (TBD).

“Lyme borreliosis is the most common vector-borne disease in the Northern
48 Hemisphere and is caused by spirochete bacteria that belong to the Borrelia burgdorferi sensu
49 lato species complex. These tick-boren pathogens are transmitted among vertebrate hosts by
50 hard ticks of the genus Ixodes. Each Borrelia species can be further subdivided into
51 genetically distinct strains. Multiple-strain infections are common in both the vertebrate host
52 and the tick vector and can result in competitive interactions. To date, few studies on
53 multiple-strain vector-borne pathogens have investigated patterns of co-occurrence and
54 abundance in the arthropod vector. We demonstrate that the abundance of a given strain in the
55 tick vector is negatively affected by the presence of co-infecting strains. In addition, our study
56 suggests that the spirochete abundance in the tick is an important life history trait that can
57 explain why some strains are more common than others in nature.” Source: http://aem.asm.org/content/early/2016/11/07/AEM.02552-16.full.pdf
According to the International Lyme and Associated Diseases Society (ILADS), (of which one of my doctors was past president): “THERE ARE 5 SUBSPECIES OF BORRELIA BURGDORFERI, OVER 100 STRAINS IN THE US, AND 300 STRAINS WORLDWIDE
This diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection.”  http://www.ilads.org/lyme/lyme-quickfacts.php

So, articles like this I simply find frustrating….

And please, *never* follow the CDC guidelines or the website, in my personal experience, they are woefully, almost criminally inaccurate. Look for articles written by people who have actually experienced tick diseases, they tend to have a much better “boots on the ground” view of the subject. 

Clinical guidelines: Potential benefits, limitations, and harms of clinical guidelines NIH.gov

Why the term “opiod crisis” bothers me so much… heroin crisis and/or illegal prescription usage, or something else more targeted to an abusive population, please. Be precise. 

There are many chronic illness sufferers who need heavily regulated medications to fuction. If the government must “intervene”, regulate, label, and restrict, please offer us an alternative such as legal medical marijuana; I don’t want to smoke it, quite the contrary, however I do want to contribute to society, there are plenty of non-smoking options that assist with chronic pain and illness that could be made available in a legal and affordable manner (Colorado and California come to mind). In New Jersey the list of “acceptable” diseases is frustratingly limited, and even if I were a candidate, the dispersal facility is out of my transportation range, and since it’s not covered by insurance, I’m told it’s expensive. Nothing in this current model helps a chronic pain patient who would like another legal option.

I have been with the same doctor since 2010, I think he has a pretty good handle on my medical needs. Yet, because of several medications I take, he and I are both subjects of special scrutiny; in 2016, the paperwork I had to fill out was almost as much as when I bought my house (really). Now, I must go every three months, even though he books three months in advance; so if I’m not feeling well that day or my ride falls through  (county bus now says it’s out of my ride service, even though it’s in the county and they used to take me there), if I have no choice but to reschedule, i usually cant get another appointment until three months later. Because I don’t drive, I can’t take same or even next day cancellations. In addition, he doesn’t accept insurance so I have to pay out of pocket for each visit, simply to pee in a cup and document I was there. This is a  chronic illness (actually multiple), it’s not going away in three months. 

Someone might ask, why not find someone closer who takes my insurance? Because he has been my one constant since 2010 after my initial diagnosis. He found my gallbladder infection and helped me get through the system to get it removed last summer. None of my other doctors caught the problem.  He has tested me for other, rare problems because he knows me and can see when something isn’t right. Having said all that, I would like to spend the time and energy I am forced to see him in searching for a new neurologist, as I have been without one since December (she no longer takes insurance, is much more $ and in Manhattan). 

Rigid medical guidelines can cause harm.

“Potential limitations and harms of guidelines: 

“The most important limitation of guidelines is that the recommendations may be wrong (or at least wrong for individual patients). Apart from human considerations such as inadvertent oversights by busy or weary members of the guideline group, guideline developers may err in determining what is best for patients for three important reasons.

“Firstly, scientific evidence about what to recommend is often lacking, misleading, or misinterpreted. Only a small subset of what is done in medicine has been tested in appropriate, well designed studies. Where studies do exist, the findings may be misleading because of design flaws which contribute to bias or poor generalisability. Guideline development groups often lack the time, resources, and skills to gather and scrutinise every last piece of evidence. Even when the data are certain, recommendations for or against interventions will involve subjective value judgments when the benefits are weighed against the harms. The value judgment made by a guideline development group may be the wrong choice for individual patients.”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1114973/#!po=32.8571