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January 19th, 2013 - Lakeshore
An author of no particular popularity

Jay Lake
Date: 2013-01-19 05:07
Subject: [links] Link salad comes out of the sun in a silk dress running like a watercolor in the rain
Security: Public
Tags:cancer, child, climate, cool, fundraiser, gay, gender, guns, health, healthcare, interviews, links, mars, nature, personal, photos, podcasts, politics, science, videos
The Acts of Whimsy cancer fundraiser and the Lakeside Kickstarter for the documentary about me, [info]the_child, and cancer are still live. Both have made goal, but additional support is always welcome. Please check them out if you have not done so yet. Note that the next unlock goal at $44,000 is [info]the_child's video, "How to Write Like My Dad".

Adding life saving science to the film — Waterloo Productions blogs on Kickstarter about their interactions with the lab which is going to do genetic testing on my tumor. We are communicating with the lab in southern California to schedule interviews with scientists and a tour of the facilities. They are eager to work with us. We believe that if this sequencing does in fact lead to a cure that saves Jay Lake's life that we must include it in the film and also help raise awareness until this process is included as a part of standard care for cancer patients.

A Worthy Kickstarter Project: Lakeside with Jay Lake

Interview with Donnie ReynoldsDonnie Reynolds is the director of LAKESIDE, the documentary about a year in the life of author Jay Lake and his family as he continues to fight stage iv metastatic colon cancer.

AISFP 184 – The Bright Light of New Possibilities — Podcast Adventures in SCIFI Publishing discusses, among other things, the "Acts of Whimsy" fundraiser.

A context-free photo from my Act of Whimsy

A Softer World hits my button — Sigh. Fucking cancer.

Friday Fellow: Bleeding Tooth Fungus — Nature is weird. And no, this is not quite as icky as you might think. Not quite. (Via Daily Idioms, Annotated.)

White Veins of Mars: Curiosity Hits 'A Jackpot' in Quest for Wetter Past — "White Veins of Mars" sounds like a terrific story title.

The Last Pictures: Contemporary Pessimism and Hope for the Future — Leaving messages behind, as a species.

A Short Rise Out of Depression — The uses, and lack thereof, of ketamine as an anti-depressant. Persistence counts. (Via David Goldman.)

What Gay Guys Think About Vaginas — Hahahah. Note: most people find this amazingly funny, but a few people have been offended. Possibly by the use of the word "vagina", I'm not sure why otherwise. Personally, I think this is both sweet and hilarious. (Via [info]garyomaha.)

The Inevitability of Global Warming and the Need for Resilience — A good weather blog. (Via [info]mmegaera.)

Gun restrictions have widespread public support: poll — Unfortunately, doing the entirely legal, Constitutional, moral and sane thing will never fly with the NRA, the GOP and America's gun owners. They would far prefer to be the opposite of those things in the comforting arms of their deadly weapons.

Hannity, Shapiro, and the Politics of Situational PatriotismRemember when conservatives used to say, "America, love it or leave it"? When just about any protest coming from somewhere else along the ideological spectrum was cause to question that person's loyalty and love of country? Ah yes. Those were the days.

?otD: Is there time to ask her questions?




1/19/2013
Writing time yesterday: 1.0 hour (2,300 words on "The Hills Are Alive…" to 2,400 words)
Hours slept: 8.25 hours (fitful)
Body movement: 0.5 hours (stationary bike)
Weight: n/a (forgot to weigh)
Number of FEMA troops on my block enforcing disability rights: 0
Currently reading: The Hydrogen Sonata by Iain M. Banks

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Jay Lake
Date: 2013-01-19 05:08
Subject: [photos] Your Saturday moment of zen
Security: Public
Tags:photos, zen
Your Saturday moment of zen.

IMG_2056.JPG

Walkway, sculpture garden, Saratoga Springs, NY © 2007, 2013, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

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Jay Lake
Date: 2013-01-19 05:11
Subject: [conventions] Announcing JayCon XIII
Security: Public
Tags:cancer, conventions, health, jaycon, personal, portland
Every year, some people tell me that I need to announce JayCon early so they can get it in on their calendars. Every year, some people tell me I need to announce JayCon later, because they don't plan that far ahead. Sometimes, these are the same people. So starting now, and going on through the spring, I will be reposting this announcement with occasional edits or updates as needed.

In celebration of my natal anniversary, JayCon XIII, my 13th annual 37th birthday party, is Saturday, June 15th, 2013 from 2 to 5 pm at the Flying Pie in SE Portland. We're partying because I was born, and because I have beat cancer again and again and again.

If you can read this, you're invited. Prior JayCon experience not required.

Also, if you're coming from out of town, and you think I might not be aware of that, please contact me. There are some limited capacity extended festivities from Friday to Sunday.

Flying Pie Pizzeria
7804 SE Stark Street
Portland, 97215
(503) 254-2016
http://www.flying-pie.com/
[ Google Maps ]

As is traditional for JayCon, Paul M. Carpentier is specifically not invited.

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Jay Lake
Date: 2013-01-19 05:41
Subject: [cancer] One example of the weird things sick people have to deal with
Security: Public
Tags:business, cancer, health, personal, weird, work
Our system is so strange, and so unkind to the seriously ill. Insurance and benefit processes are optimized to mitigate fraud, not to help people in need. That means real people in real, desperate need have to jump through sometimes bizarre hoops to achieve compliance. This at a time in their lives when they are least equipped to deal with bullshit. As I've said before, I wonder if it would be cheaper to remove all the complex infrastructure of compliance enforcement and fraud management and just accept a percentage of free-riding scammers in any given benefit program. Basically, shift the overhead to kinder place. Not that we'll ever do that, because of the apparently horrible thought that someone, somewhere, might be enjoying an unearned benefit at our expense. As a society, we value punishing the non-compliant far, far above the value we place on actually helping people in worst need of their lives.

Sobeit. That's the system we live under. During the 43 years I enjoyed the privilege of good health, I didn't question it either. I don't really expect healthy people to question it now. Once you need the system, it's a bit late to start protesting. Frankly, none of us seriously ill people have the time and energy to do so. We're too exhausted trapped in our conditions, and too busy dealing with the Byzantine healthcare and benefits systems. Meanwhile, very few of you healthy people are even aware of the need to do so.

So here's the latest wheeze: Disability benefits.

Like most people with a white collar job, I have coverage for both short term disability (STD — Yes, I know. Quit giggling in the back.) and long term disability (LTD). STD is a benefit my employer provides, LTD is an elective benefit that I pay for with a little dip into every paycheck.

As it happens, determining what qualifies as a disability under either coverage umbrella is a pretty strange process. STD isn't quite as weird as LTD, but it has its quirks. The rules are complex and contradictory, and require cross-referencing different systems and rulesets written to differing standards. In LTD, for example, the question of whether I qualify under the rules of the Social Security Administration (SSA) affects whether or not I will qualify under my private, employer-sponsored, self-paid plan. Likewise, the precise information my physician provides to my health insurance carrier can make a significant difference.

I'm not seeking LTD yet. I don't need it right now. But I am trying to understand the process so that if and when my cancer goes terminal, or if I reach a point where I will likely be in continuous treatment for the rest of my life — either or both of these things are probable in the next year or so — I'd like to know what to do. STD applies to my forthcoming surgery leave, albeit with some weird conditions.

Something cropped up yesterday in the LTD discussion that struck me as especially strange. (My Dad has been researching a lot of this for me. As a retired senior Federal bureaucrat who's managed some very large budgets under Federal accounting rules, as well as living under the strict requirements of high level security clearances for almost four decades, he's quite good at sorting out paperwork and rules.) As it happens, I hold a small LTD plan as a rollover benefit from a job I left over a decade ago. I pay a modest quarterly premium, and the plan will provide me with a modest supplementary income should I ever claim LTD status. Their criteria are, of course, different from that of the SSA or my employer-sponsored plan.

Yesterday, the payroll department at my Day Jobbe informed me that according to the rules of my employer-sponsored LTD plan, any income from other LTD sources, including SSA or my privately-paid LTD plan, will be deducted from my employer-sponsored LTD benefit.

What? The? Hell?

I pointed out that this was both illogical and punitive, and asked what the reasoning was. The response I received was sympathetic but unhelpful. Basically, they don't know, and they also find it weird. To be clear, my employer has been fantastically supportive through these past five years, both in terms of corporate policy and in terms of my individual managers and co-workers. I am very lucky to work where I do. They are not creating this problem in any direct sense. I told payroll I would be consulting an attorney, and they asked me to please share whatever opinion I received with them.

Here's what I see as the problem in this case. If I'm wise and foresighted enough to have a separate LTD benefit paid for privately, what does that have to do with the insurance plan that would pay out my LTD claim? Presumably their premium rates and actuarial calculations are geared toward paying full benefit. My secondary, private plan is essentially income supplementation, as the employer-sponsored LTD pays out at 66-2/3% of my income level. So because I was smart enough to buy "gap" insurance against the possible income loss, now I am to be punished by having the amount of that "gap" benefit deducted to cap me at 66-2/3%? What possible justification is there for this? How is this even legal?

Note that health insurance carriers do something similar, but it's logical enough. They're trying to avoid double paying claims. That makes sense to me. But health insurance plans don't work on a defined benefit basis. They're at-need, and they're paying for that need. With two carriers covering the same patient, they can negotiate amongst themselves as to which carrier will pay what percentage of which needs.

LTD benefits are defined — in my case, 66-2/3% of base salary. Income from other sources is irrelevant to that benefit definition. This would be like your 401(k) provider deducting any other income from your retirement account payout. The LTD benefit is defined, and paid for according to a specific schedule.

I have not yet been able to speak to an attorney. I suspect the answer I'm going to ultimately receive is that this is somehow written into Federal law. This is still an illogical and punitive step on the part of my LTD provider which makes no sense to me. If nothing else, I may as well quit paying the premiums for my private LTD plan, as it is literally useless to me in light of these rules from my employer-sponsored LTD plan.

So, one more example of the kind of weird things sick people have to deal with. While sick and unable to cope with the bizarre details. I'm lucky I have my Dad in the loop, because I can't imagine how I'd be fielding this all by myself along with everything else.

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