Category Archives: Gen. Musings

My thoughts on anything and everything not specifically categorized. Whimsical and opinionated. Read at your own risk.

An Open Letter to Rev. Franklin Graham from a “Small Church” Pastor

When Christianity is getting a bad name from people who call themselves Christian – without bothering to follow Christ – we all live in a hateful, more dangerous world.

Trinity's Portico

Dear Frank

Can I call you Frank? This is just pastor to pastor. Feel free to call me Peter. Anyway, I have to say I was flattered when I learned that your Decision America Tour took a detour off the beaten path to call upon us “small community churches.” We are nothing if not small. We seat 30-40 on a good Sunday. And we are a century old fixture of our small community. Most often we are overlooked and overshadowed by mega-churches and politically influential religious voices like your own. We don’t hold a candle to an auditorium filled with the music of a one hundred voice choir led by professional musicians. We probably will never be recognized in any nationally syndicated media. After all, we don’t do anything really “newsworthy.” We just preach the good news of Jesus Christ; love one another the best we can (which sometimes isn’t…

View original post 1,243 more words

How to make impossible health decisions

 Plant, desk lamp, laptop on desk. Text: Who gets to decide your life? Alicia Butcher Ehrhardt

GATHER ALL YE FACTORS

I’m trying very hard to make a rational decision on an important medical consideration with a brain that is being kept from thinking by the drug supposedly required to keep my new stents from causing me problems themselves.*

Why? Because the side effects are not only bad, but getting worse daily.

THE PROBLEM

What’s at stake?

Possibly life vs. being a thinking being.

What is a clear statement of the problem?

The drug clopidogrel (generic Plavix) has side effects which are making this writer’s life impossible to live: I can’t think, ergo I can’t write. And since writing is the only thing left in my life that I can do, this is a very big deal. Pain levels are hugely larger: I have acquired a chronic headache, and my pain control meds for CFS don’t work properly. Taking extra over-the-counter drugs is a problem for bleeding and long-term liver damage, and they are not really helping.

Timing considerations?

They want me to take the clopidogrel for 10 more months at a minimum.

I haven’t had enough energy + brainpower to write fiction since April 8; I started the drug in question (clopidogrel) on March 23 when the previous anti-platelet drug sent me to the ER with a huge BP spike (the BP had been increasing, hockey stick exponentially, for several days at that point).

Complicating factors

Chronic health conditions already in place: ME/CFS, twenty-seven years duration; severely limited mobility, due to botched back surgery ten years ago.

Clopidogrel has the side effect, among others, of bleeding; being on it increases my risk of stroke; since I’m also taking Celebrex and OTC NSAIDS, the risks are additive.

Due to the CFS, my body is highly intolerant of most meds; they started two BP meds and a cholesterol lowering statin at the same time as the Effient (anti-platelet); the side effects were ferocious. I dumped them all, except for the Effient, within three weeks of getting the stents.

When switched to clopidogrel, it took about two weeks for the side effects to build (typical for this drug), and three weeks for me to figure that out (typical for this brain on these drugs).

Alternatives?

Effient – which raised my blood pressure to high enough levels for me to end up at the ER five weeks after starting it; and Brillinta – which has its own whole host of potential side effects; the doctor said her patients on it complain fiercely of the side effect of shortness of breath.

NOTE: I have not yet tried Brillinta; would probably face a similar decision in whatever time it takes for its side effects to become intolerable.

Fish oil has some anti-platelet effect; I have taken it with no problem in the past.

Resources for making the decision:

Doctor’s recommendations – never stop clopidogrel for any reason. No concern about or help with side effects.

Online scientific papers exploring the drug and the possible complications both of taking it AND of not taking it.

Severely limited human brain – having zombie side effects from said clopidogrel while trying to make a decision.

Vague information in papers of the effectiveness – and dose – of fish oil.

Previous experience making difficult decisions:

While I was doing my PhD in Nuclear Engineering (plasma physics) at the U. Wisconsin-Madison, the only woman in my cohort, I would tell myself that I was under such stress it was impossible to make good decisions; that making a good decision on whether to quit the program and do something else with my life was too important to be made unless I did it well; and that I would have to be finished with the PhD before it would be possible for me to make a decision NOT to finish it. (With the complication that I planned to apply to the astronaut program, and KNEW NASA would never consider me if I dropped out of a PhD program.)

I am happy I finished. I got my chance at NASA, though one of my eyes missed their cutoff, and they had candidates without that limitation to choose from so did not make exceptions. But I made it to Houston, almost made the cutoff, and will always treasure that.

Difficult MEDICAL decision: I was 24. I started running. I developed bursitis in my right hip. Doctors at University of Wisconsin hospitals wanted to operate on my hip. That sounded crazy to me, so I got myself out of there, found an orthopedist who specialized in sports medicine (yeah, me, the total non-athlete), explained I had just started ‘running.’ He told me no guarantees, but built me orthotics – and that was all I needed for running for many years.

Difficult MEDICAL decision: After back surgery in 2007, I couldn’t walk properly, and had a fair amount of pain. The same surgeons who made this possible wanted to operate again, would not guarantee any improvement, only ‘keeping things from deteriorating further,’ and I walked out of there, learned to deal with the pain with yoga and stretching and strengthening exercises (THEN lost weight). In 2014, another round of the same – two more orthopedic surgeons – with the exact same words: ‘less than 50% chance of walking properly, but prevent further deterioration.’ Have not taken them up on their ludicrous offer; if I’m going to put myself through the hell of another 6-12 months recovering from back surgery, it’s going to be for someone who knows what he/she is doing enough to give me MUCH better odds of walking again. I don’t want even more scar tissue back there when I find the right surgeon. I’m not necessarily saying these are GOOD decisions, but they were certainly the right decision for THOSE doctors. I try again periodically, but there is little energy to work with.


THE GOAL

Simple: I wanted to go off the anti-platelet drugs, and I wanted to know how much risk I would assume by doing so, if such were known.

This is what is meant by ‘Informed consent.’

[NOTE: this is not my job, calculating risks, but it freaked the cardiologist out even to be asked. You would have thought I was intending to jump out of a plane with no parachute, and I was warned of immediate massive heart attacks and told anecdotes about same in people who were so foolish as to stop their anti-platelet ‘therapy’ and ended up immediately back in the hospital.]


THE DECISION PROCESS

*NOTE: I started this post when I had not made the decisions I’m talking about. WITH ZOMBIE BRAIN.

On inspection, I find it awkward and rough, and have decided NOT to change what I wrote precisely because that is the way most of us have to face these decisions: not in the comfort of hindsight, but right in the middle of the fray, with everything going on, with side effects rampant, and the doctor’s ‘advice’ ringing in our ears – and OFTEN without any actual DATA. The ‘recommendations’ created by a panel of medical experts are only as useful as the specificity they include; if they don’t take into account your gender, age, previous medical condition, and the particular side effects, they are USELESS for you in making an INFORMED DECISION.

So what did I do to acquire all the information to make the best decision?

I read. Probably a hundred scientific papers on:

  • Short- and long-term dual anti-platelet therapy (DAPT)
  • Anti-platelet drugs
  • Drug-eluting stents (DES), especially the second generation ones such as the ones I’ve had implanted
  • Discontinuation reasons and side effects

I also read about:

  • Cardiac rehab
  • Heart attacks in women and differences (heartily recommend Heart Sisters blog)

I consulted my online groups:

  • CFS Support group
  • CFS Exercise with a heart rate monitor group
  • and comments on my blog posts

I read the journals I have been maintaining since stent installation – I have over 60,000 of my own words recorded, side effects and observations and BP readings and drug history. (Okay – 10% of that is the automatic time stamp from Scrivener – everything has one.)

It was done with ZOMBIE BRAIN; my notes are erratic, and all over the place, when I want to find something I thought I had made a copy of.

Most researchers did NOT study the cohort of people who dropped out of their studies on the effectiveness of these drugs and stents. I find that medical malpractice: they had data, didn’t analyze it and/or didn’t publish it.

Once patterns started emerging, I was more focused, and could look for specific papers.

A specific link led the way: Medtronic, in 2013, announced that its new second-generation stent had ‘No Stent Thrombosis Seen When Plavix and Aspirin Stopped Early.‘ They actually STUDIED the people who stopped taking the drug for various reasons; out of a 5000 people study, ONE THOUSAND did so. The conclusion – not much difference in results, as long as the DAPT was maintained for the first month (during which it was hypothesized that the stents hadn’t finished their new inner layer of epithelial cells in the cases that had problems – or were not placed correctly – or some such).


THE DECISION

My decision – not to take clopidogrel any more, NOR ANY OTHER ANTI-PLATELET DRUG, after I’d already taken Effient for 5 weeks and clopidogrel for a month after that:

April 25, 2017 at 11:21 PM
Nervous – who wouldn’t be.
TAKING FISH OIL 1200 MG. CAPSULE WITH NIGHT PILLS, INCLUDING BABY ASPIRIN, BUT NOT CLOPIDOGREL.

[Note: fish oil has mild anti-platelet and BP lowering effects – I’ve taken it before with no problems; don’t remember why I stopped. Sympathetic magic?]

From what I had found and read, I expected a small – if any – additional risk factor. In the papers which were against taking this or any risks, the few numbers available often indicated a tiny ABSOLUTE risk increment (1.2% to 1.8%) blown up to look horrible by being quoted, based on the risks of taking the stuff, as a FIFTY PERCENT larger risk [RELATIVE risk: 1.2% plus 50%(1.2%) = 1.8% risk IS a 50% larger risk – the statistics are correct and insignificant and inflammatory – cf. How to Lie with Statistics, a wonderful little book for non-scientists and non-mathematicians.]

I assumed that risk knowingly, and in consultation with my life partner.


THE ANTICLIMAX (of course)

AFTER I had made my agonized (and much discussed with spouse) decision, I found the paper I SHOULD have been pointed to in the manufacturer’s information on the stents in the family of second generation DES called XIENCE, and by the doctors:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706013/
ISRN Cardiol. 2013; 2013: 748736.
Published online 2013 Jun 23. doi:  10.1155/2013/748736
PMCID: PMC3706013
Risk Factors for Coronary Drug-Eluting Stent Thrombosis: Influence of Procedural, Patient, Lesion, and Stent Related Factors and Dual Antiplatelet Therapy
Krishnankutty Sudhir, 1 , 2 ,* James B. Hermiller, 3 Joanne M. Ferguson, 1 and Charles A. Simonton 1

NOTE THAT THE VERY TITLE MAKES IT UNLIKELY TO COME UP IN CASUAL SEARCHES. Title doesn’t even mention the brand of stents, nor does the title imply there will be far-reaching recommendations at the end about DAPT.

The relevant parts of the conclusions (ST is stent thrombosis, literally, the stent clogging up, a very rare but potentially fatal complication – see Sec. 8 of paper for details):

9. Conclusions
ST represents a major complication of DES implants, usually leading to either cardiac death or MI. Preclinical studies have shown that inflammation, parastrut fibrin, and endothelial coverage vary between stents, and more biocompatible polymers in newer DES may have improved endothelial coverage and thus less ST. The risk of ST in an individual patient is related to numerous factors that include patient and lesion complexity, suboptimal stent deployment, adherence to and duration of dual antiplatelet therapy, and stent type and design (see Table 1). There is emerging evidence that second-generation stents, particularly XIENCE V, have significantly lower ST rates compared to first generation stents. Various components of the newer DES… may all contribute synergistically to the preclinical and clinical evidence of enhanced safety. …Treatment with DAPT for a year is currently the standard of care for DES, but more potent antiplatelet agents such as prasugrel and ticagrelor may be beneficial in high-risk patients. DAPT interruption appears safe beyond 30 days in standard risk patients and beyond 6 months in an all-comers population that received the XIENCE V DES. The optimal duration of DAPT for DES is unknown; recent data indicate that short-term therapy may well be sufficient for real-world patients treated with XIENCE, a finding that should be systematically confirmed in large-scale randomized controlled trials.

Weasel wording in various places reminds us that these things – stents AND DAPT – are very big business (in 2011, Plavix was the second largest drug in the WORLD, bringing in 9 BILLION dollars for its creator; even now that generics are available, these are still very remunerative drugs), and researchers have to mind their ps and qs until recommendations change for the medical boards – if they ever do.

Bleeding risk due to DAPT not mentioned in this paper, but it is, of course, larger with clopidogrel than without. And one of the main problems of long-term DAPT.


THE AFTERMATH

I have NOT changed my decision, but finding this paper – on the very XIENCE stents I have in my arteries – really took a lot of the residual stress (stress is bad for cardiac patients; stress kills) out of my life.

I’m not saying I will not have an ‘adverse effect.’ No one can guarantee that. I’m saying that my INCREASED risk is negligible to zero, and now doesn’t include the component of BLEEDING that is the bane of long-term DAPT, and since I’m also terrified of strokes, and believe I may be at an increase risk of those because of my pain meds, that has ALSO reduced my stress.

For normal people, clopidogrel is out of their systems in 5.5 days. I’m not normal (my liver seems to process things very slowly, possibly why I have so many side effects), but it’s been that long now, and the first thing to go was the back pain, and the exaggeratedly painful flares after exercise (my EIGHT pitiful minutes of cardiac rehab three times a week set off days of unmanageable pain). I still haven’t heard back from the doctor’s office about my request for pain med prescriptions and advice on OTC amount limits. My next appointment is scheduled in three months. I guess I could call back, but maybe I’ll just wait until July. My husband knows what I did.

The brain may be coming back (this latter part of this post is far more coherent, I think) – I had a short period yesterday in which I was able to read my notes about where I am in Chapters 22 and 23 of Pride’s Children: NETHERWORLD, and sketch out a few dialogue exchanges. Rough when I reread them, possibly usable. I hope I was not on clopidogrel long enough to do actual damage.

This is part of me working through my Post-Traumatic Stress – writing and talking about things, and resuming control of my life where possible.

I am STILL grateful to be alive. I am STILL not happy with any of the process.

I would have willingly assumed a reasonable additional risk, as the side effects were escalating, and I had no desire to go through every anti-platelet drug in their arsenal to try the more esoteric ones. But I have the very strong feeling I have assumed NONE.


My thanks to Stencil for providing the ability – and a nice clean interface – to make the graphics I use for many of these posts. I’m using a free account, but would use them in a flash if I needed more than the 10 free images a month.


Keep me stress-free – recommend my fiction.

I couldn’t put a tenth of what I found into this post; please ask any questions you have.

ME/CFS is in the news but the novel is already written

CFS (ME/CFS) in the news

**** PART 1: NON-FICTION – Documentaries, etc. – The Facts ****

Facts – non-fiction books and documentaries – are incredibly important for getting the actual story of what is a major unsolved public health epidemic out.

There have been MANY, MANY books on the ME/CFS crisis – memoirs, Ostler’s Web, books getting out the story of the things which have happened, and how money has been consistently diverted from research in the disease because doctors don’t believe it’s even real.

And there will be many more. It is a very serious subject, and causes untold misery WORLDWIDE. It doesn’t affect only women, and the treatments proposed – such as the whole PACE ‘study’ in the UK (aimed at making sick people exercise in a way which makes them sicker – but saving money for their national health system AND blaming the victims) which has been totally debunked by statisticians as ‘bad science.’

But all of that keeps the reader who doesn’t have CFS OUTSIDE the loop of having the disease.

A new TED talk – more facts

My husband just came in, and told me, all excited, that he had just watched ‘this TED talk on CFS,’ and had I seen it?

He’s lived with me having it for 27+ years, and he still has this enthusiasm when the media give my disease, and the people who live with it, any attention.

I dedicated Pride’s Children: PURGATORY to him – because this man in my life is the reason I can write: now that he’s retired, he’s taken over the paperwork I used to do when he was teaching and had not a minute to spare, paperwork I did because it had to be done (educating the kids, getting them into college, paying for it; taxes; whatever was necessary for the house). Paperwork I did, not well, not efficiently, but until it was done.

He does it now, and it consumes all his time in retirement (because he IS doing it well, and setting things up for the rest of our lives, and dealing with how do you live so your nest egg makes it) – and I get more time to write. Which is good, because the writing and marketing have gotten more complex (market book #1 while writing Book #2 is, for someone like me, excruciatingly close to an oxymoron), and I have gotten older and less mobile and less functional.

But, in many ways, he accepts how I am – but he doesn’t read fiction. He hasn’t read Pride’s Children. That I can tell. And Pride’s Children arranges for you to understand CFS – without making it too hard for you.

So when he came up to mention the TED talk, it was almost new to him.

Jennifer Brea’s TED talk:

Should you watch? Yes. Is there treatment? No; only symptomatic

I asked him if I should watch it (I haven’t yet), and would I learn anything new? He thought a minute, and said no. Which didn’t surprise me. It’s a lovely TED talk, I’m sure, and cost Jennifer Brea an enormous number of spoons to do (Hugh Howey was all aglow on his blog when HE saw it), but there was little to nothing I, who have been living with CFS (okay, politically correct people, ME/CFS) over FIVE TIMES longer than Jennifer, and keep up with in various ways, didn’t already know.

I’m glad she did it, but it was for the general public who watches TED talks, not me.

I’m glad she did it, because it is harder for people to trivialize and marginalize and say it’s a woman’s disease, or hysterical, or all in her head, when the victim is a Princeton-educated Harvard PhD student. Princeton – which has as its motto “In the Nation’s Service,” trains its students to be activists and entrepreneurs – with a social conscience. I don’t want this lovely photogenic young lady to be sick, but since she is, I’m glad her entrepreneurial spirit – and help from her friends at Princeton and Harvard – makes MY disease harder to ignore.

Trust me. It is a huge gift to the world. Most people who watch this talk will be inspired, but they won’t get it – and will move on to the next cause. Whereas I KNOW what this effort must have cost her.

Hugh Howey said, on his blog:

…Another incredible talk came from a woman with myalgic encephalomyelitis, or chronic fatigue syndrome. It was one of the most powerful talks I’ve ever seen. Again, it came with a preamble and a warning. We were not to applaud at any time. Instead, we waved our hands above our heads like we would for someone who was deaf. Any kind of stimulation can be exhausting for someone with ME.

Watching Jennifer speak from her wheelchair, pausing to catch her breath now and then, laboring through both physical and emotional exhaustion, brought this disease to life. More people suffer from ME than MS, and the funding is sparse. A mere $5 spent per patient, compared to thousands per AIDS patient and hundreds per MS patient. Part of the problem with ME is that sufferers simply disappear from view. They crawl into darkness. It is an invisible but pernicious problem.

The other and more ruthless impediment is the shame and humiliation those with ME suffer as they are told there’s nothing wrong with them, that it’s all in their head, that they should just overcome the disease with a force of will. Because we do not yet fully understand ME, doctors look to psychological explanations. Jennifer tells us that it’s far better to say “We don’t know.” But the suffering is real. Jennifer will pay a heavy cost for traveling here from Boston, but she gives a face and a voice to the disease. It was a courageous display that brought me to tears…

But that enthusiasm hasn’t translated to something I can see. Yet?

I wrote to him in a comment:

July 9, 2016 at 5:41 pm

I’m glad you were able to learn about CFS at the TED conference.

I’m doing my best to make CFS better understood – but from the emotional side. I believe fiction has the power to break through the barriers people set up against having the outside world impinge on their consciousness to an undesirable level: we can’t exist if we worry continuously about every problem in our world.

My novel Pride’s Children: PURGATORY has a CFS main character.

I also believe that the harder a concept is going to be, the better the level of entertainment around it will need to be – I’ve tried to provide that. It’s on Amazon.

 I got no answer to my comment after moderation allowed it through.

Other huge efforts from people with CFS:

Laura Hillenbrand showed what could be done by first writing Seabiscuit, and then writing Unbroken – narrative non-fiction (not about CFS, but written by someone WITH CFS). It was amazing work, done over MANY years, by someone with NO energy.

Jen Brea ALSO was just featured for a documentary she worked hard on at Sundance which used to be titled ‘Canary in a Coal Mine’ (to indicate that what we don’t know about this illness and similar ones may be critical for more than just its victims) and has been retitled ‘Unrest.’ Again, kudos to this wonderful young lady for the effort, skills, and entrepreneurship which led to a prestigious documentary featured at a major film festival.



**** PART 2 – FICTION: BETTER than facts for developing empathy ****

The novel which lets you experience CFS from the inside is already written. It is called Pride’s Children.

Fiction – the kind I write – will make you FEEL as if you have CFS yourself. Without that being the main aim of the novel. You will still have to live, cope, and aspire to love – while ill.

Fiction gets under your skin.As I keep emphasizing:

Fiction gets around the barriers people put up to protect their hearts and minds.

From feeling too much. From really ‘getting’ it, and feeling its devastation PERSONALLY.

I started writing what I hope will be the definitive treatment in FICTION – in 2000.

Slowly, painstakingly, with a huge commitment to learning to write.I published the first third of the story in a mainstream novel in 2015, Pride’s Children: PURGATORY.

How the CFS part of the plot is woven in, from reviews:

Each obstacle the characters must over come is treated with depth and intimacy. It’s not gooey (I hate that) but gritty in an intelligent and classy way… (KR)
Kary is CLEARLY a hero, by any criteria you want to apply apart from armed combat, and she is the center of the book. She lives in isolation in New Hampshire, and writes; she suffers from Chronic Fatigue Syndrome, and it robbed her of her previous career as a physician, and gave her weak/treacherous husband the excuse he needed to rob her of her family. She has other grief in her life, but she does not share the pain casually. … 1. You get a private tour of the life of someone living with an incapacitating disease…. I compare it to the Thanksgiving feast we just celebrated at our house… (PP)
The main character copes with Chronic Fatigue Syndrome, one of those “invisible” illnesses that get people vilified by mouthy and judgmental people for using handicapped parking spaces when they don’t have an obvious limp…But it isn’t Disability Porn….These characters, you see, aren’t one-dimensional, they’re four-dimensional: They’re full-bodied and they exist in time. Like real people you meet in real life, they have histories, and they’re made up of all the people they’ve ever been and all the people they could possibly become. They’re the people they seem to be to others, the people they seem to be to themselves, the people they wish they were, the people they’re afraid they are, and the simmering stew of people-stuff that they actually are…. I couldn’t stop reading it, and I wanted it never to end. (AC)
Kary’s world revolves around her Chronic Fatigue Syndrome. Getting through a normal day is already an enormous challenge. From calculating nap times to building a sensory deprivation office, she does everything she can to keep functioning. The last thing she needs is to fall in love with Andrew. Fate, or maybe temptation, won’t let her off the hook. At every turn, there is Andrew, offering an alternative to the tried and true. (CG)

The best fiction is not ABOUT the illness

But it is a tiny part – though extremely important – of the total story. As any obstacle the characters deal with in a novel SHOULD be.

The STORY is key – or you won’t read. Anything that interfers with STORY doesn’t belong in fiction.

I’m not out to make you feel sorry for a character; that’s too easy. I’m out to make you BE a character, be Kary, live her story – from the INSIDE.

Try it – to see if it gets under your skin. Got to Amazon. Don’t buy it yet – just read the Look Inside feature – and live with CFS for a short while. You can leave that world behind. She can’t.


Thanks to Quozio for the ability to easily make images of quotes.

Chest pain is not always heart-related

chest-pain

BUT CARDIAC CAUSES MUST BE RULED OUT FIRST –  THEY CAN BE FATAL

Your brain, the precious thing that makes you, YOU, cannot function without oxygen for more than a tiny number of minutes. After which, if it doesn’t get that oxygen, you are no longer YOU, even if you survive.

Get that through your head.

Before you read what follows. And remember it.

The Perfect Storm

I’ve hesitated to write this post all week because ‘The Perfect Storm’ is never apparent except in hindsight. And I’ve been feeling like crap.

As a result of the CFS I live with, you can consider me immuno-compromised all the time. Sometimes it helps to have my immune system cranked up all the time – I fight off many things with a shorter period of malaise than many people. But when it gets overwhelmed, it REALLY gets overwhelmed.

I had been coughing, as a result of first one virus, and then, probably another (probably caught from husband who thought he had caught it from me – and didn’t take precautions – and probably gave already-weakened me the horrible virus he picked up somewhere else), since around Nov. 1, 2016. Sometimes very violent coughing. Painful coughing. But not chest pain. Remember that. Not chest pain.

And yes, I had seen at least four doctors (including mine twice), had a chest X-ray, antibiotics, steroids, and an inhaler of albuterol. My lungs had been listened to carefully, and pronounced good, then diagnosed as bronchitis, then diagnosed as ‘tight’ (whatever that means).

I had the feeling that if I could just STOP COUGHING for a while, everything could get better. I really hope so – I’ve now managed to not cough for two days.

More scary symptoms added – caused by cough? Or revealed by cough?

Older white female, heavy, sick a long time, not very mobile, is not a good place to start anything from.

This is where things get a bit fuzzy. I don’t know when the extra shortness of breath started – because I didn’t record it. I just took my time climbing up the 33 steps from the crypt of the Princeton U. Chapel where I sing on Sundays with a tiny Catholic choir. Was it just the CFS lack of energy? Or was it something new? And was it a result of the coughing, or something made worse by the coughing? I honestly don’t know.

But shortness of breath is a symptom that shouldn’t be ignored if it gets worse. Nor should the tightness in the chest that went with it. If you wonder how I managed singing with the cough going on, it wasn’t continuous, I took over-the-counter meds to control it (paying for their help with the extra fuzziness that hits my brain as my body clears out the meds), and I really like to sing, and there was, accidentally, a long hiatus between the last time we sang in December (the 17th) and the first time I made it in February (the 5th). Vacation, the choir director canceling because he thought there wouldn’t be many people there, and a couple times I was too sick to go and didn’t want to cough on my choirmates. So, a big gap – during which I coughed a lot.

So I sang last Sunday. And noticed things were not good in the pain department, so I took the steps extra slowly.

And then, that night, the first trigger?

Triggers for chest pain

Are not always obvious. In retrospect only, the chest pain flare – significant and scary – Sunday evening was set off by me having a chocolate protein shake. Silly, right? I had had eggs for breakfast, so I decided to have my usual shake at night. I make it with lots of ice, and it’s very close to a milkshake (okay, for someone who doesn’t eat carbs if possible), cold and frosty and tasty.

And sometime shortly after I finished it, a wave of chest pain that stopped me short, raised my blood pressure, and scared the heck out of me – but slowly resolved, leaving me shaking and wondering whether I should be doing something. But you know what Sunday night after the Superbowl must be like at the ER, and if you’re not absolutely sure you should be going to the ER – after all, the pain resolved, right? – you pretend it wasn’t so bad and go to bed. Just to be sure, I took my blood pressure, which was high but came down slowly to almost normal.

That’s the place at which many fatalities happen, and yes, I’m perfectly aware of that.

The next morning I called the cardiologist’s office, and moved my appointment from Feb. 23rd to last Wednesday because they had an opening. The cardiologist was my primary’s idea BECAUSE SHE THOUGHT SHE HEARD A MURMUR – almost a year ago – and I had finally gone to see her, had had the recommended echocardiogram and ultrasound of the carotids, and had that appointment on the 23rd to get the results (which turned out not to be significant, or they would have made me come in). I was being reasonable.

The cardiologist’s nurse whom I was talking to – and had told about the spasms which resolved – concluded with, “If you have any significant symptoms, head to the ER.”

I hung up after those words.

On the cusp here.

Except that, while I was talking to her, I was having my morning protein shake – same as usual, full of ice, I was still coughing, and I drank it at normal speed, not really paying attention.

And in all this remember that I’m operating at much reduced brain speed – because of that infernal and exhausting coughing that just won’t go away completely. I haven’t, at this point, written fiction in weeks – because that requires that all the indicators align perfectly, and I haven’t had that in weeks. We CFS types call it brain fog.

And then it happened: decision time

An unbelievable wave of pain hits me in the chest.

Husband frantically puts on clothes, intending to drive me to the local hospital (in retrospect, I should have let him – they did nothing IN the ambulance), but I lie down on the living room floor when faced with the prospect of walking all the way out to the car, and make him call 911.

I’m coherent enough to walk him through FINDING a non-enteric-coated full size aspirin tablet (he had brough me four of the baby coated ones, and I though they might take too long to dissolve), as the dispatcher said to take. The people who make it first are the firemen – I guess they had nothing to do. They can’t do anything, and they don’t transport, but there they were. To be with us (I suppose they have CPR training) until the EMTs get there. To help me down the seven steps to the front hall (at which point they let me walk myself to the downstairs bathroom just fine – should have taken that as a sign).

The EMTs get there, transport to hospital – without doing a thing IN the ambulance except, as we practically pulled up to the hospital, rolling out the oxygen tubing you see on TV going into the nostrils – which was then on my head for less than 3 minutes. Revenue enhancement? The things you think about!

The chest hurts a lot, but it is, like Sunday night, slowly resolving. The BP has been high, but is coming down. I am trying hard to calm my breathing and heart beat.

At this point you are as committed as if you jumped out of a plane

NOBODY in this whole system can send you home now (and you’re still terrified anyway – chest pain really hurts).

Every bit of exertion IN the hospital sets off the waves to some extent. I duly report this.

I won’t bore you with the rest of the day, the admission to the hospital, the doctor from the cardiologist’s other office who tells me my symptoms are indicative of 90-95% blockage somewhere. And scares the hell out of me. And orders drugs which I later, when they are offered in the hospital that night, I decide can’t possibly help in one day, and I refuse to take drugs without discussing them thoroughly with MY cardiologist and bringing up the whole CFS thing (this was the statin; I think I took the aspirin).

By the way, if it had been cardiac, taking the statin right away is important (said MY cardiologist, but I still don’t see how – she said it prevents even more damage to the heart – must look that up).

And the train wreck continues (as well as the pain, enhanced by fear)

You can probably see where this is headed, but, after a totally miserable night on a hospital bed after being in an even worse, if possible, ER bed all day, with all other indignities not being related here, they haul me off by ambulance the next morning to the cath lab at St. Mary’s in another state (PA), and finally, after a circus of paperwork and other activity, actually go in and LOOK at the state of my arteries, etc., with the view to saving my life by stenting those presumed 95% blockages.

Only to find nothing major (though there are the beginnings of plaque they don’t like), and SEND ME HOME. No stents. No hospital stay. NO prescriptions.

With no one caring about the, you know, actual CHEST PAIN.

Which is the same theme when we see the cardiologist the next day, who now wants to treat me as if I’d come in for cardiac reasons (instead of the benign Level 1 heart murmur which tests show is accompanied by minor calcification) – and start me on meds: no, nothing important wrong, but you really should start taking these heavy-duty drugs which are known to cause significant muscle pain, especially in the CFS population, and memory problems in many (c’mon now – I have TWO brain cells left, and can’t afford to lose them).

No, the drugs don’t lower cholesterol.

No, the drugs don’t REVERSE plaque buildup. Nothing, apparently, nothing chemical can do that.

No discussion of alternate methods of lowering cholesterol (like diet, my only real option as exercise isn’t possible – can’t go aerobic because the body can’t produce energy aerobically).

The end? The summary? The conclusions?

  1. If your chest hurts enough, or worries you enough, you HAVE TO GO TO THE ER. Period. You don’t belong at your doctor’s office, or even at urgent care – they don’t have the facilities should it be, you know, a heart attack. Only a hospital does. I did everything right. At the ER they take blood three times, 8 hours apart or so, and they look for certain cardiac enzymes to be present, to indicate you may have had a heart attack. But this takes a while. Meanwhile, they treat you as if. They have to.
  2. It may NOT be cardiac. Some 23% of chest pain is NOT cardiac OR pulmonary. It might be esophageal spasms, or intercostal muscle spasms (the intercostal muscles between your ribs pull air in and push it out, and they were already in revolt from the coughing. Probably). The pulmonary pain can be separated out a bit, but may not keep you from a full cario workup. I don’t know about that one. The pain/spasms could be chronic or acute, or getting there – you won’t know until analyzing all the evidence later.
  3. I ended up getting a heart catheterization, the gold standard for actually LOOKING, which might have taken a lot longer otherwise – but might also have never been done, especially if the pain resolved soon enough AFTER THE COUGHING stopped. So I have the baseline I, as a PWC (person with CFS) would not be able to get with a treadmill stress test (testing to exhaustion has horrible effects on PWCs; I won’t do it) or chemical stress test (same effects on PWCs; won’t do that either). But it didn’t have to be the whole ambulance/ER/cath lab emergency experience. IF the chest pain hadn’t stopped, I would probably have had the test eventually.
  4. If the doctor you see in the ER gives you meds he says you should take, take them. I did with the ER doc’s meds (I think). It was later, in the hospital bed alone all night (they slap a heart monitor on you and then only come if you call) when I decided not to take the meds the over-zealous cardiologist ordered. 50/50 on that one.
  5. It is possible (maybe) to stop your own coughing – IF it’s on the way out anyway, and you take it very easy, and use the OTC meds (and the cough syrup with codeine I was prescribed at one point in those 3+ months), but it’s a full-time job, and I may only have been fooling myself. By my husband’s symptoms – he who gave me the second virus – I had expected to be done with the coughing by this Wednesday. It happened/I forced it to stop on Thursday by fighting back with every cough attempt. Maybe my yoga breathing helped a bit. I couldn’t do it before, so maybe that’s also completely bogus.
  6. Don’t get sick. And even if you think someone else’s illness is the same as you have, it is STILL possible to hand it back and forth – so keep up with the precautions, don’t get near other sick people, wash your hands a lot… Everything spouse didn’t do.
  7. Try not to have overlapping illnesses. It messes up the diagnoses.
  8. Don’t be stupid – this was a royal pain, a huge expense, and a possibly wasted effort – and it was still the right thing to do.
  9. You may feel like an idiot when it turns out your heart is fine. I did. But you shouldn’t. They really can’t tell, and you really need to know, and you can’t take that chance. And you are the only one who can decide: What’s happening isn’t right, for me. Unless, of course, you’re passed out on the floor and trusting someone else will make the right call.
  10. I am SO glad it is over (or getting there).

Share your own happy experiences in the comments. I’ll listen. Might learn something.

My morning walk through my Internet village

A pink-soled sneaker being tied onto a foot; Words: Every morning I take a walk and stop to say hi to all my Internet friendsSURFING? OR FREEDOM FOR PEOPLE WHO DON’T GET OUT MUCH?

What other people do so easily, would be impossible for me: I’m technically retired now, though the last 25 years of my working life were spent on disability, and I can’t just ‘go out for a walk’ like healthy people my age.

I’ve recently gotten to the place where I can walk more, but it isn’t easy or fast or convenient or unassisted, not like when I used to go out the front door, turn left (or right if I wanted to add an extra bit around the cul-de-sac), and just go, walk wherever I happened to decide, and come back when I’d had some exercise.

But I do something similar when I get on my computer in the mornings, and, while I’m waiting for the morning’s caffeine to decide if there are going to be working brain cells today, I walk around my Internet neighborhood – the sites on my navigation bar – and see what’s up.

Procrastinate first, except for the rare days when there’s something my limited brain can do in the writing department before it is warmed up. I’ve tried – nothing seems to work – so I’ve decided to enjoy my morning walk, do it as efficiently as possible, and not fret about the time wasted/spent. Angst is not helpful, so I don’t bother any more. And I almost never add any new stops to the navigation bar.

HOME COMPUTER: Email first – well Duh!

I check email several times a day, and make sure to deal with what I can asap, as friends write, and several newsletters show up with something new, and often a quick response saves much time and effort later.

Plus, as you can tell, I like to write back. Gets the brain moving and the fingers wiggling.

Sometimes I find responses I needed from missives I’ve sent out to friends or other sources, and know I’ll be able to move something forward.

Occasionally, I have to do something, such as go to the basement and read the numbers on the meter for the solar power system, near the first of the month. They can’t do their paperwork until they have my input, so it gets a high priority.

FIREFOX: First stop on the Internet are my own blogs

I refresh the page, and the thingy in the top right hand corner will tell me if I have visitors, and if they’ve commented. New comments on the blog always get first priority

First stop after 9AM – TPV; if much earlier, do this later

I stop by The Passive Voice for the morning publishing news (and several times more during the day because Passive Guy puts up five or six posts every day). It’s like a visit to a cafe where you get good commentary, and rude people aren’t tolerated. We mostly stay on topics related to publishing and books and such, but David has an interesting mind, and gets stuff from lots of places.

Extra points if posts have a comment at the bottom from our gracious, handsome, and intelligent host – his wry humor and delicate satire are things for joy.

People send him stuff. He is a good host, posting an excerpt – and a link to the original. He is careful not to ruin the original post, while giving you enough to decide if you’re going to visit it.

On most blogs, comments need supervision, and are often not worth the time to scan them; if you don’t read the comments on TPV – and subscribe so you get the late ones – you’re going to miss things. Useful things.

WU – ‘about the craft and business of fiction’

I stop by Writer Unboxed most mornings, at least to get a quick look at the topic and the post’s byline. I skip Flog a Pro – kind of hate the idea of people feeling they can freely trash work they couldn’t produce; mean-spirited and negative some times. Not me. Other bylines or topics I know I won’t respond to from the title or a bit of the post, I skip; otherwise, I read the post.

I consider whether there’s anything I’d like to add to the discussion (there’s usually a question or two at the end of the post as a prompt); I leave my little addition to world literature or my (usually different) take on the subject, read those of other people I recognize, and maybe pop back later; I like posters who bother to come back and join the discussion better, but not all of them have/take the time.

FB – for friends and support groups

You get out what you put in on FB. You are a contributing member of a community – or not. Since one group is a support groups for people I know have extremely limited energy, that group’s members get a pass – some can only afford to post when desperate, and we all respect that.

My group of friends is small, and I don’t sell or proselytize much – that’s not what friends are for. My blog posts automatically on my personal FB page; if there’s anything that the groups might find useful, I cross-post them on the group page. A little goes a long way.

I check out any friend requests – most are obvious spammers – easy to tell (and block permanently) if I take a peek at their page. I’ve even reached the point of checking with the ‘friends in common’ if a friend request is odd and unexpected in any way.

I have no author page – yet. It would be one more thing to maintain – maybe if it seems a good idea later.

CHROME: GR and my British friends

A daily stop, maybe several times, is a nice bunch of people on Goodreads in the UK Kindle group who have made me feel welcome. I’ve read enough British authors in my life to practically qualify on that alone. Occasionally there will be something in my inbox from a GR friend.

I usually save those for later response, but almost always read them right away.

The notifications function provides a quick way to keep track of the threads I comment on or read.

The comics – and Dear Abby

And I’ve had my bit of entertainment for the day; I have them set up for easy refreshing on the Chrome browser, and can update and read and pass on good ones to friends with a few minutes’ effort. Doesn’t that happen to you? A comic just makes you have to send it to a particular friend?

Extra points when the friend later emails back that it was especially appropriate or welcome.

The daily brain puzzles – measuring brain speed (if any)

Usually the last stop on my little trek, I set up a few hard sudokus, maybe do one or two, to gauge whether my brain is starting to work the way I need it to work for writing fiction.

I’m looking for a completion time below seven minutes; and I monitor, with a partial brain, how the math processing is going. I can literally feel it when I’m not tracking – I can still do them most of the time, but they feel like slogging through mud, and take forever. The CFS brain fog is clearly at work here; sometimes it won’t go away. I can work a bit, but it almost isn’t worth it without a brain. I’ll get ten minutes worth of writing done in three hours.

Yahoo news

If it makes it to Yahoo, I take a quick scan; other news items will show up in paper (The Economist and other magazines), or someone will boost them on FB, so this is really a desperate measure to find SOMETHING to read before I have to (want to/have to) get to work.

The end of the walk – home again, home again, higglety pen

After a final quick check of the emails, and possibly TPV depending on timing, and a superquick and usually pointless visit to Amazon’s pages that show book sales, I grit my metaphorical teeth and start up Freedom or Anti-Social to block the internet for my available writing time.

Then have chocolate protein shake, and take First Nap (sounds counterproductive, but isn’t – search for ‘mental dialysis’ posts), and when I wake up again and come back to the computer, the writing is sitting there ready to go, I’ve checked out that the whole world is okay until I have time to look again, and I don’t even think about all my friends for hours.

Turning into a routine makes it much more efficient than it used to be.

Keeps me sane.

And productive.

And connected – the most important part of all. My internet friends are REAL friends. I just maybe don’t really know how tall they are.


Thanks to Stencil for images I can create or edit.

Do you have a morning computer routine?

Censorship, prudence, peace-making, black-listing

nuanceIT IS IMPOSSIBLE TO BE VALUE-FREE WHEN WRITING

I’m having a very hard time blogging, commenting, and being a responsible citizen on Facebook right now.

Responsible, because I want to stand by my words online, even if you read them in a month when the craziness is muted. Not gone – the consequences of this election will haunt this nation for years.

Born in California, reared in Mexico City, and living permanently in the States since I went to Seattle U. to finish a college career interrupted by non-student communists shutting down the National Autonomous University of Mexico (UNAM) in 1968-69, I have NEVER seen an election like this one.

Being an INFJ (sliding to an INTP depending on my mood when answering questions – it’s impossible to tell with older people who have adapted the world to themselves with practice), supposedly makes me a peacemaker who, according to one online site,

‘their real passion is to get to the heart of the issue so that people need not be rescued at all.’

and

‘Egalitarianism and karma are very attractive ideas to INFJs, and they tend to believe that nothing would help the world so much as using love and compassion to soften the hearts of tyrants.’

The problem is I’m censoring myself

I’ve always tried to express my own opinions, and not jump on bandwagons too quickly. I spend time writing comments, re-read before posting, and tone down things which might be taken as fighting words.

The touchstone: not saying anything online I wouldn’t be willing to say in person, with that willingness being tempered by having to achieve something positive, or what is the purpose of talking.

I get snippy occasionally – everyone does – but tend more to pour oil on water than light it up for flames.

But I can’t tell you how many times lately I’m deleting entire comments, leaving challenging statements unchallenged, NOT saying something I really think should be said.

And not just about politics, but on Goodreads, in private FB groups, and even on that bastion of even-handedness and civility, ThePassiveVoice.

And it’s causing me some real discomfort.

Firebrands exhaust me

I’m not the best person for defending or advocating for anything – my energy is too limited.

I have the comments. I WRITE the comments.

And then I delete them, because the climate seems fraught. Everyone’s temper is short. People who claim to be Christian use language Christ would blanch at to impugn someone else’s ancestry.

Racism, sexism, ableism – all are alive and kicking. And punching. And screaming.

I blocked someone on my Facebook page I’ve homeschooled with, and known for twenty years (not close lately, but still).

We used to paper over differences, not mention differences in beliefs where it was not important, strive to find the common ground. Our homeschool group had several Jewish families, at least one Muslim one, ours (the Catholics), and a large collection of mainline and evangelical Protestants – and we coexisted and went on field trips together.

Nuance, thesauri, satire

It’s easier to stay out of the fray.

Indie publishing and traditional publishing long ago developed into separate camps with entirely different belief systems. I read, formed my own opinions, chose the indie camp and don’t regret it.

But, as a writer, I know perfectly well how to slant word choices to make a subtle point. Except that the subtlety seems gone, and everything said seems to lead to an assault on the castle walls.

I hope to hell it’s temporary

And that I won’t be ashamed of anything of said during the proceedings.

But I’m shaken. And unhappy. I’ve always thought it was a great thing to be an American, and that, regardless of problems, this is where I want to live. I’m looking forward to when diversity is even greater in our country, and education serves ALL our kids well, so they have futures.

And now we’re going down a possible black hole. And even the possibility of the black hole has done huge damage with its gravitational force.

Surely we can do better than this.

What to do? What to do?

I’ll gird my loins, go back into the fray, keep attempting to use reason while understanding there is always injustice.

And hope the rest of us are shaken enough to look seriously at ourselves and make sure we’re not making things worse. Platitudes, all, but I intend to try.

This can’t be, as someone said, ‘the end of the American experiment.’

Have you had a similar experience?

The damaged brain: the OTHER writer’s block

A volleyball alone on the beach. Words: Will I know when the game is over? Or will my brain just slip away. Alicia Butcher EhrhardtOVER THREE WEEKS WITH NO REAL WRITING IS SCARY

I live with a major fear, that my damaged brain, so far able to eke out a couple of hours on a good day for being creative and writing fiction, will some day become unusable for this purpose.

Add aging decline to the damage sustained from illness or trauma, with the inevitability of death at the far end of the descent, and the conclusion is inescapable: one of these days I will write my last, whether I know it at the time or not, and I won’t be able to cajole the neurons into working for me ever again.

This happens to Alzheimer’s patients, such as novelist Iris Murdoch. One day, after not much work, the pen is put down – and never taken up again.

Or a stressful interlude may divert the writer for a while to other matters, and the synapses break down in the interval – and writing is never resumed.

What will the end be like and when will it come?

I don’t fear it so much if I don’t notice it, though I fear greatly the depredations dementia perpetrates on its victims, including the lucid interludes which come and go, with the old desires undimmed.

What I fear is what happens every time I take an enforced break – taxes used to do it to me, preparing for/going on/recovering from vacation does it now every time – of not having my good time available to write with regularly because said good time is required for more pressing matters which I have decided to allow/have forced on me.

This vacation, which ended last Sunday, Oct. 9, with a long day of travel, has been followed by an extraordinarily non-productive week. Unproductive of fiction, though I’ve written several blog posts.

Because I’ve sat myself down at the computer most of every day to write fiction. And it isn’t coming out because I’m not having my good time. It isn’t happening.

Interruptions are harder for me, and take longer to come back from

What I’m having a lot of is interruptions. Hubby is doing taxes, belatedly, for NJ – and has decided to investigate various long-overdue details from the years when I was doing them because he was working – and ‘needs’ things, and he needs them now so he can move forward with his plans, and he doesn’t know what he will need ahead of time so I can locate them the night before, and he can’t divert his attention to something else because whatever it is is on the critical path. One or two of these diversions, which cost people in general almost a half hour each to recover from, and me much longer, and that day is dead to fiction. Yes, I’m that fragile.

Daughter is moving out, coming and going at random, requiring something very small at times – where are the decongestants? Or rather where is the box where I usually find decongestants? Which requires that I stop what I’m doing, important or not, and find them in the suitcase we took on vacation, which I meant to return to the box on the floor which will then go back to its natural place in the bathroom closet – where she would have found the decongestants without bothering me, had I made it that far on unpacking.

A friend who moved precipitously to Florida, without me having a chance to take her out to lunch and talk with, calls. We spend an hour on the phone, and I will take her out to lunch when she comes back to get the house ready for putting on the market – we’ve been friends thirty years – and I want to talk to her. Up until recently, she was right across the street – and we rarely found time to talk because I can’t easily walk over there, and she has grandchildren, and there was always tomorrow – only now there isn’t.

This Saturday started with the leaf-blowing neighbor and his lawn cutting service making a constant noise I could only partially block with my ear-plug-and-industrial-strength-headgear solution – which isn’t really comfortable enough to write with on the days where I’m so close to the edge of not being able to write – like today. The leaf blower just came back for a second session, forcing me to wear headgear again for my afternoon nap.

Coming back from a sea-side vacation with wet bathing suits and T-shirts requires laundry. It has taken chunks out of four days, and will take more: gather and wash, put in the dryer before it gets moldy, get daughter to bring up because heavy loads are getting too much to me, and folding – but it’s sitting on top of my still full suitcase, instead of being stored where it belongs, closets and drawers in several rooms, because it is ‘vacation stuff.’

Healthy people don’t have these fears, even when they get sick

Daughter pushed through, loaded the car on Thursday, drove four hours, unloaded in NY state. Today she drove back with the feeling of being sick, and went out for the evening and possibly overnight – as soon as she had some lunch. I used to be able to do that, LONG ago.

I wrote the above a while ago, before a nap and dinner, and then the hubby came in and complained about being under the weather (he napped all afternoon) since we got back, and the fear died down a bit. Maybe we’re still fighting off that small vague illness we all brought back – and the aftereffects will go away.

I hope so. Even at my pace, I want to use what’s there to write.

But that fear won’t ever go away.


Do you experience this kind of writer’s block? For the same – or a different reason?


***** Just a few more days until the end of the fall Kindle Countdown deal – 0.99 US, UK *****

Amazon US & Amazon UK:

Social Security and disability retrials in Kentucky

If you’ve been following this blog for a while, you know that I have occasionally boosted posts from an online friend about the almost 1500 cases the SSA is re-trying in Kentucky – because the lawyer who won disability for these clients has turned out to be not what he should have been.

The SSA is blaming the legitimately disabled clients – for their poor choice of lawyer (Eric Conn) YEARS ago.

Well, there may be hope on the horizon – a judge in one of the cases has stated:

Federal Judge Thapar just entered an order declaring that the SSA has treated Conn’s former clients worse than Al QAEDA members in ruling that the ongoing hearings are unconstitutional!

Visit DC’s site to see the links and more information, but I would like to pray that this is the break the disabled clients need to get through some of the unbelievable machinations (What is there to hide? is my question) of the SSA.

If you have the stomach for it, read more of the posts on the site, boosted from Ned Pillendorf’s site (he’s the lawyer coordinating the efforts to defend all these folk).


I am no longer subject to the whims of the SSA, as I am ‘retired,’ but found it incredibly frustrating myself (was turned down the first two times, and got very little retroactive disability income when it was finally granted) to deal with them.

And I never did manage to find a way wherein a disabled person can publish (assuming they’re up to writing) – knowing what I now know about how erratic writing income can be – because the SSA can only deal with X hours per week at Y dollars as being a source of income for a disabled person. I’d give you more details, but it is incredibly short-sighted and BORING, and I wasn’t able for years to get them to look at how writing income would affect disability income.

Also fortunately for me, I had nothing publishable until well after I was ‘retired,’ so it didn’t matter to me (I didn’t withhold Pride’s Children – it took me that long to finish it) that they couldn’t handle it, but young disabled writers would be destroyed by the rules.

This effectively silences them – unless they write for free.


Remember – disability and illness can happen (and are five times more likely than death) to anyone in the years before retirement. This affects all of us, especially artists and writers, and we don’t even know about it until it is too late.

The odd reason Pride’s Children will never be free

Text showing a Google search of a site infringing on IP by offering a free download of Pride's Children.IF YOUR BOOK HAS NEVER BEEN FREE, THE PIRATES STICK OUT

I’m not as blasé as some indies about ebook piracy. I’m not spending a lot of time and energy on something I have no control over, such as sending DMCA take-down notices to websites which post supposedly free access to millions of ebooks, mine being a small minnow in their insatiable maws.

For one thing, I don’t think I’d have any real effect.

For another, I’m not sure I want those people mad at me.

And again, I’m sure a great many of those sites, if not all, are phishing sites, and people who attempt to get a free book are sufficiently punished by having their personal information harvested.

And finally, although the greats in the indie world like Hugh Howey and Joe Konrath think that if anyone ever reads these downloads they might turn into a fan and buy your other books (or which I have none right now), I’m skeptical.

And I already offer a free ebook Review Copy to anyone who will consider writing a review (consider only – there is no way I could enforce a promise anyway), so if you want to read it, drop me a line. There’s no real need to pirate. A copy from me will just be a nice clean file (and possibly you need a format other than .mobi for Kindle, too).

Does the price of an ebook encourage pirates?

I follow Kris Rusch’s and Dean Wesley Smith’s pricing strategies. I do understand that there are some readers who have been burned, and won’t try indie work unless it is very inexpensive – in some way, that’s the cost of the new freedom to publish. It will sort itself out.

I don’t think the listed price for an ebook affects pirates at all, though. I think they just grab everything for their lists with computer algorithms, and don’t take any time to curate their selections.

The automated service to protect IP – Blasty (beta)

I’m a beta user for Blasty, a program being developed to defend your intellectual property by automating the process of identifying infringements and issuing the take-down notices for you. As far as I know, they’re still not charging beta users as they develop their program, but I’m sure it will be a service with a fee when they’ve gotten it tuned up.

But right now the process involves them showing me everywhere on the web the phrase ‘Free download PC’ appears, and asking me to click ‘Blast’ if it is infringing.

And it is super-simple for me to BLAST! when I can scan Google’s 24th page of results quickly, check the ‘free download…’ phrase, know that I have NEVER made Pride’s Children free for ebook download, and click the Blast button. I don’t have to THINK.

And, since I’m well past a thousand completed blasts, and just had to spend a while blasting another 15+ pages worth of Google results (at about ten a page), I’m grateful for shortcuts.

The furor for free is a feeding frenzy

When I homeschooled, I discovered that even caring homeschooling families had an odd quirk. I’d go to the trouble of arranging, say, a visit – FREE! – to the NJ State Museum. Families who got their registration in first got the 20 places the museum reserved for us, with a staffer to take us around and do activities with our kids. And people would simply not show up. When families could be 7 members, that left me looking like an idiot with the museum, and besmirched the name of homeschoolers, AND annoyed the heck out of people who didn’t get on the list because they took too long to respond – and could have gone.

So I started charging a small per-person registration fee – say $5 – and refunding that (essentially just returning the check to the parent) if they showed up! To an event they had signed up for and committed to. In principle.

Principle: if you have skin in the game, your commitment is real.

I think ‘free’ in indie ebooks has had its best run already. I feel people grab something free (which now doesn’t stand out much), but haven’t invested even a buck, and never get to most of what they grabbed.

Permafree – such as the first book in a series – seems to be an exception. I’ll know if I ever finish a series! That makes sense, as a ‘loss leader’ to tempt a reader to try a new author. I haven’t taken any on myself to read, so I don’t know whether it is a good tactic.

Conclusion, summary, will she ever shut up?

Thought it would be a way to introduce you to Blasty, and payment (I get a blog post out of spending the time clicking those red buttons), and a little oddity for your reading stream.

Now that I’ve started blasting – a never-ending process, it seems – I’m wondering where this is going to go. Pirates adjust their algorithms every time something new comes along, I’m sure. I’m not worried about them at this point, possibly never (if the indie greats have thought things through, with their experience, I’m good with the concept of not worrying about piracy).

But if Blasty manages to automate this process even more, so I don’t have to inspect those pages and pages of people offering free downloads of MY book, the phrase which includes ‘free download’ will be the automatic giveaway.

Because I’m not making Pride’s Children free. Ever.


Advance warning: there will be a Kindle Countdown sale the first week of October – US and UK 0.99. If you’re following, you’ll get the post which announces it.

And the offer – contact me if you want to read it for free (abehrhardt [AT] gmail) – is still open. I’d love it if you would then post a review on Amazon if you like it.

New post over at Pride’s Children

QUICK UPDATE:

I put stuff that is more book-related on the other site – and if you have been supportive lately – for which I thank you – there is a list of the things that keep me going over there.

It’s constantly amazing how much effort it takes to get a book launch off the ground, but it’s a very big world, and I haven’t wanted to play some of the cards I have.

I would always rather books made it on their own merit, but there is that pesky bit about people even hearing that it exists, and with 7 billion people on the planet – and it seems 7 million other books competing for attention – maybe a little noise has to be made.

I’m just reading, studying, and searching for the RIGHT noise.

There are cards which are hard to un-play, information about an author which, though relevant, makes you think of the author and not the book, so I’m holding onto some of those.

All writers (okay, most – those generalizations are always wrong. Hehe.) want to be read, and read widely. I’m no different.

Even ‘merit’ is a slippery concept. You are advised all around to ‘write a good book’ and ‘know your audience.’ Hard to do when you don’t write in a particular genre, and are at the mainstream/commercial end of the literary spectrum (i.e., well written, I hope, but not high-falutin’).

IN ANY CASE – I’m always glad to have y’all talking back to me.

If you write literary/commercial/mainstream, know where the audience is, and how to interest them, PLEASE let me know. I’ll make you cupcakes or something.

Rhetorical questions in fiction: good or bad?

Healthy dessert with grapes, cherries, and granola, with the words: What do you think? 3 question marks. Good? Bad? and Alicia Butcher EhrhardtSHOULD YOU USE RHETORICAL QUESTIONS WHEN WRITING FICTION?

This was a shocker.

When working on Pride’s Children: NETHERWORLD, I came across a note:

Sue Coletta: don’t use rhetorical questions. They take you out of the story.

Like all other blanket prohibitions, this one is wrong.

But it sounded good. And I had stored it away for a reason, specifically to make sure I didn’t do something that took my readers out of my stories.

How many rhetorical questions are too many? One? Two? In how much ‘scene’?

I had just finished writing the first scene for one of my main characters, and it seemed a good time to 1) check to see if I had many rhetorical questions in it, and 2) to go back to Book 1, Pride’s Children: PURGATORY, and see if I had that problem there, too.

I startled myself: this main character, Kary, had TWENTY-SEVEN rhetorical questions in her new scene. Wow. Certainly too many.

So I check a different main character, Andrew, and found he had a couple. (My scenes have 800-1500 words in them, typically.)

I went back to Book 1 and found Kary had another huge number of rhetoricals in her last scene. Andrew, only had a few in his last scene in Book 1.

And I realized how different I had made these characters in how they talk to themselves – and I didn’t even know I’d done it!

One of my ‘go to’s on my Left Brain righT method is to ‘Become the character’ before attempting to write the character’s next scene. It includes going back and reading that character’s last previous scene, and possibly a few before that, to get into the character’s voice and mannerisms.

This turned out to have a vastly different style in something I prized, the interior life of the character – and I didn’t even do it on purpose.

Characters are different – duh!

I’m not sure whether I’m channeling or inventing these characters.

But it spooked me.

I don’t know when this happened, and yet there it was.

I just knew they were different, and I knew how they were different (from spending years living with them in my head and in my notes), and the characterizations came out by themselves.

I like things like this in my writing, but I always thought I did them deliberately.

About those twenty-seven rhetorical questions that Kary had? I couldn’t change a one.

Takeaway?

Sue’s admonition – Don’t ask rhetorical questions because they take you out of the story – needs to be changed.

To: ‘Don’t ask the READER rhetorical questions.’

Because it takes the READER out of the story.

It’s fine for the CHARACTER to ask herself questions without answers. How often? As often as she would do it if she were real.

Is she?

Dunno.

What is real?


Do you ask rhetorical questions?


Thanks, Sue. You made me think – and that’s always, uh, interesting.


If you find any of this intriguing, and/or want to see rhetorical questions in action, you can find Kary’s scenes in Pride’s Children at Amazon US, written by the same person who writes these posts. Note: the link leads to the reviews; the product page link is in the right sidebar. Don’t you like to see what other people think about a writer before considering buying?

PS I’m depending on word of mouth right now, as I can either write, it turns out, or market. Or you could go out and find a cure for CFS, so I can do both (might be a wee bit harder).

Mainstream: when your writing category vanishes

mainstream

THERE USED TO BE THREE GENERAL CLASSES OF WORK: MAINSTREAM/COMMERCIAL, LITERARY, AND GENRE.

Where did the mainstream go?

Caveats

I’m writing this post to dump the contents of my brain* about what has happened to the classification of novels on sites such as Amazon BECAUSE of the desire to categorize everything into smaller and smaller bins so the reader can find exactly the kind of book he is searching for.

It isn’t meant to be a scholarly discussion of any merit – and I welcome differing ideas, but would appreciate a general sticking to the question: Where did the mainstream go?

Mainstream fiction – as opposed to what?

This is a serious question. Type ‘mainstream’ into your Amazon search box and you won’t find the novels you expect. Maybe I should say that I’m older, and these aren’t the novels I expect.

‘General fiction’ brings up so much stuff I would consider genre fiction that it’s useless.

Although very well written genre work elevates a good story to a literary quality – which is where such novels as Margaret Atwood’s A Handmaid’s Tale are, in my opinion – it doesn’t make it mainstream or general fiction – the story is, in my mind, literary SF.

What IS ‘mainstream’ (IMHO)?

Mainstream fiction is meant to be appropriate and engaging for a majority audience.

Some books which I would call mainstream:

Love Story

The Thorn Birds (when it came out)

Gone With the Wind (ditto)

On The Beach and Trustee from the Toolroom (Nevil Shute)

Airport (and many of Alex Hailey’s other books)

Hawaii (ditto, Michener’s work)

Exodus, QB VII (and others by Leon Uris)

Authors such as Sidney Sheldon (The Other Side of Midnight) and John Fowles (The Magus)

The Bridges of Madison County and the novels of Nicholas Sparks

Some of these books are now classified as ‘classics,’ but were mainstream when they came out. Others are currently classified as ‘historical fiction,’ but the same applies: they were meant for a very large audience of literate people, an audience that went from children/young adults to older people, male and female, and encompassed much of the educated population.

There were no conventions; this audience could handle a WWII novel, a novel about finances, or The Key to Rebecca. Or Daphne Du Maurier’s Rebecca.

Mainstream. Commercial. Epic. General fiction.

Or simply what used to be called ‘a novel.’

And the category used to cover what was called a ‘big book’ – books with large casts of characters and elaborate plots, whether or not they were well-written, encompassing a spectrum of writing quality from Dan Brown to Ken Follett and Mary Stewart’s Arthurian legend novels starting with The Crystal Cave.

Mainstream novelists. People who wrote for the broad center of the complete reading public. Writers for whom plot and characterization were important.

But most importantly, people who did not want the reader to have to stop because of the language. The writing quality was sometimes awkward, generally competent, but stopped short of going into literary rhapsodies – because that would stop the readers’ flow.

Literary fiction then and now

A category which used to encompass everything from Proust (A la de temps perdu) to The Color Purple, ‘literary fiction’ used to mean stories that were intended for a more discerning audience than mainstream fiction, one with a more educated group in mind – and people who were comfortable with and appreciated language and description and minutiae and nuance. People who expect literary allusions and epigraphs and quotations from English poets, who can read Saul Bellow’s Seize the Day with pleasure.

I can’t. That kind of fiction, with its exaggerated precision and lack of plot (on the more literary or experimental end), makes me itch. These books are often taught in English and American Literature classes (the box where I found my husband’s copies had a large number of books of that kind) as ‘good for you’ and requiring study. It often meant work that was tinier in scope and more enamored of language than most readers were looking for.

Oddly enough, ‘literary’ as a category on Amazon is now used heavily by the big publishers to indicate that their books are better (and worth the much higher prices charged). When Data Guy puts out the quarterly charts of book prices by genre, the columns above 9.99 for ebooks are labeled literary and occupied mostly by traditional publishers: big 5, medium and small presses, and university presses.

Worse, literary is now the keyword associated with work which is the same as everything else, only better written. Literary fiction writers are probably screaming about that.

The problem with ‘literary’ as a category:

On Amazon, ‘literary’ has come to mean ‘mainstream.’

Now, ‘literary’ means anything not in a specific genre such as SFF or Romance or Thriller.

I’m sure authors of true literary books are not pleased to find their category invaded by everyone who thinks they write better than average prose.

The rise of genre fiction, partly propelled by Amazon and search categories

Books such as Asimov’s Foundation Trilogy were clearly science fiction. And The Lord of the Rings has always been fantasy.

Romance is a relatively recent category, but Pride and Prejudice is not a Romance; it is mainstream. Jane Eyre is now called ‘literature,’ but was mainstream when it came out.

Thrillers, mysteries, and such have always been genre – and some of its practitioners have elevated these genres by writing so well that we could probably call them literary mysteries, etc. – but the general audience I’m trying to delineate wouldn’t call them mainstream.

NOTE: there have always been omnivorous readers (I was one) who read anything they could get their little hands on, but we knew what we were reading when we chose a mystery or a science fiction story like Dune. Same stuff – only very well written.

Amazon provides all these categories and subcategories and sub-subcategories, but it doesn’t curate the lists. If you write ‘literary’ on your fantasy novel, it says ‘fine’ and shows that book with the literary novels and the fantasy novels, depending on other things like reviews and sales.

Nobody curates these lists online – it takes too much human time and trouble. Algorithms do it.

But it renders categories almost useless when anyone can put a paranormal romance with werewolves into general fiction. Or call their work literary. And I’ve had writers tell me they do this because their appropriate category is too crowded. Aargh!

What to do about this – assuming anyone cares?

And I do care – because I WRITE mainstream fiction, and I aim for the literary end of the writing quality spectrum – careful language. With the very strong warning to myself that it is NOT allowed to stop the flow.

I label it ‘literary’ and ‘general fiction’ and ‘psychological’ and ‘contemporary Romance’ (it IS a love story.

And I cringe when I do it.

I want my mainstream back. I probably won’t get it.


NOTE: If you’d like to see what the heck I’m talking about, Pride’s Children: PURGATORY, the first book in my mainstream contemporary love story trilogy, is available on Amazon US in ebook and print. For other countries, it’s easiest to type in the book’s name.

Thanks to Stencil for the ability to create images. I use fewer than 10 a month, so I have one of their free accounts. When I need more, they have very reasonably priced services with a LOT of flexibility.


*How and why I noticed the disappearance of the mainstream

I’m ideally positioned to answer this question because of an accident: for the past twenty-seven years, most of the energy normal people use for reading and writing fiction has been denied to me due to the energy-sapping disease called CFS – Chronic Fatigue Syndrome.

In the beginning, merely surviving the illness and coping with the children took everything I had. After a number of years, things improved a bit (or older children require somewhat less intense mothering), and I started thinking how to stay sane, not merely alive.

Writing was the answer – something I could learn to do and had always wanted to and planned to do.

We won’t argue names and etiologies here, but CFS has a constellation of symptoms, and my worst three are:

  • Brain fog
  • Exhaustion
  • Pain

The relevance of this is that I don’t have energy for reading AND writing, and, because I wanted to write, and had a story to tell, I have spent most of that time on the debut novel Pride’s Children: PURGATORY. And I didn’t read much during that period. When I woke up, ‘mainstream’ had vanished.

It’s a subject close to my heart – as I write mainstream fiction, and, as an indie, I’m having a very hard time connecting with the right readers. A collection of terms such as ‘literary’ and ‘contemporary’ and ‘romance’ does NOT add up to ‘mainstream love story which deals realistically with disability, fame, and integrity,’ does it?

‘Write the book you want to read’ is then followed by ‘find the people LIKE YOU who want to read the same book but can’t/don’t write it.’ The problem: I have no idea how I would attract ME to my book. And the categories aren’t helping.

What say you?

Non-24: When someone you love is an okapi

Hoofbeats‘WHEN YOU HEAR HOOFBEATS, THINK HORSES, NOT ZEBRAS’ IS A STANDARD INSTRUCTION GIVEN TO DOCTORS.

In other words, the problem is more likely to be caused by something common and well-known, than by some esoteric illness or virus or unknown bacterium.

More likely, yes.

But what happens to the person who isn’t even a zebra’s worth of common? To the person with the weird (ie, not yet well understood) illness?

Why am I asking this question? Because I just got a request for feedback from a ‘second opinion’ company, about which more in a bit.

I didn’t think three things could strike the same family: me, a father who is an extreme geek with experimental data, and an okapi*.

Never heard of an okapi? An okapi is an African ungulate that looks a bit like a gazelle someone has exchanged the legs of with a zebra. Yup. The legs are striped, the body plain brown.

It is real.

Once you see one, you will remember. Here is one from Wikipedia Commons for your convenience:

Okapi2.jpg

Horse treatment is standard – What, it doesn’t work for you?

And when your little okapi keeps getting standard medical treatment as a HORSE, and you finally figure out what the matter is, and ‘they’ (the medical establishment) could have figured it out a LOT sooner if they had even considered your input as a parent, well, the fury is rather large. Especially when this has been going on at LEAST EIGHT years and has ruined your little okapi’s life.

It is ironic, literally, that the mother in this family (me) has an invisible illness that is characterized as ‘of unknown origin, caused by attention-seeking, probably psychosomatic’ by most of said medical establishment. If you have one of these, you know how you are treated by doctors. Because this mother does, she has learned to be very determined and to question EVERYTHING.

But when you go to see doctors, TELL THEM what is going on with the okapi-child, and they basically ignore you because they can’t find something their little horse-tests tells them is treatable by normal horse-treatment methods, and they blame your little okapi for not following useless horse-recommendations better, then you start to get VERY frustrated.

Horse treatment makes okapis worse, but it must be the okapi’s fault

Worse, they give your poor little okapi things that don’t work, and then say that’s all they have. And refuse to dig deeper!

And the medical establishment is happier with a multiple-disease ‘diagnosis’ of which two parts are psychiatric and the third is ‘mild’ – and not responding to their ‘treatment’ because the patient isn’t following it – that you start to feel as if you, the mother of the okapi, must also be insane.

Small rant against the medical profession

You trust ‘medical professionals’ to deal with the medical side, the physical and mental side of living in a body.

They cultivate this to the point of absurdity by their authoritative demeanor and white coats and beeping machines.

And then they let you down, over and over and over – which is normal because these body/mind things are complicated, and insurance companies – but they make it worse by telling you, the victim here, that it’s your fault.

Bad enough the SLEEP DOCTORS – over all these years – couldn’t figure it out; after all, they’re HORSE-doctors. But you’d think they’d know there were other animals in existence, and that they might run across one every great while. They should be LOOKING.

The insurance company pays for a SECOND OPINION

The ‘second opinion’ people took a very careful history – and  ignored everything we told them. (These are the people you’re supposed to be able to rely on when the ‘first opinion horse-doctors’ don’t seem to be solving anything and are recommending things you are not so sure about.)

And didn’t even say, “if you think that’s what it is, here is what it will take to confirm or deny that.” And gave as a suggestion something that had already been tried for a LONGER period , and then ignored by the originating doctor AND the supposed specialist.

So we parents got involved. I took the information we’d been telling the latest batch of doctors, sleep and otherwise, and asked myself what it meant. I discovered a rare sleep disorder called Non-24 Hour Sleep/Wake Disorder. And it fit.

Non-24 Hour Sleep/Wake Disorder – inability to sync to the 24-hour day

Non-24 is a disease of the inability to sync circadian clocks with the normal day. Normal people have a 24+ hour day, which is synced, via light through the eyes to the pineal gland, to the actual day, adjusting as necessary for the seasonal changes in the amount of daylight. About half of all totally blind people can’t do this – they have Non-24.

And an unknown number of sighted people have Non-24.

Reported day-lengths range from a bit over 24 to several hours more. Our little okapi has a visible rotation, which turned out to be 27 hours. Once you get started on such a rotation, many things conspire to make it a bit longer, few to shorten it, and almost none to shorten it spontaneously to ‘normal.’

If you look up the medical websites and the literature, the disorder is considered rare in sighted people. After going through what we’ve gone through, my guess is that, since erratic sleep behavior, late nights, staying up all night, sleeping late, etc., are common behaviors among teens and young adults (especially college students), Non-24 may instead be highly underdiagnosed.

“I can’t help you if you don’t follow the protocol.”

How to find out if you’re lazy and characterless – or suffering from a sleep disorder:

We had to go to the extreme effort of getting 10 weeks worth of data ourselves, and having a professional statistician analyze it, and then find our own specialist (which the insurance company refused to pay for in-network, saying they have competent doctors there – colleagues of the horse-treatment one in the SAME building).

The specialist took one look at the graphs produced by the okapi’s father and said, “Yup. That’s it. You got it.”

No, the mother is not crazy. She is being ignored and discounted and treated like an idiot.

No, the child is NOT a horse. It isn’t even a zebra. It is an okapi.

And damned lucky to have the crazy determined woman for a mother and the extreme geek statistician for a father.

And incredibly lucky to find a researcher who studies okapis. And just might know how to treat them.

The moral of this story:

  • Listen to the crazy woman
  • Or: at least consider the possibility of okapis because you actually listened.
  • Or: a determined mother is worth something.
  • Or: be persistent – and be prepared for it to take a LONG time when you’re up against the medical/insurance establishment.

The sad part:

The treatment may take some time, but is not even expensive. It could have been tried a year ago, years ago. The standard horse-treatment actually makes the problem worse – because of the timing – though it MAY accidentally work if several weeks of it are followed (long enough to hit the right spot by accident – could be four weeks of misery). Maybe – as it might not be recognized???

I guess we should be happy this didn’t happen, because there is no understanding attached to accidental cures or treatments if the next time the problem recurs, it doesn’t work again by accident because, for example, it it not done for the right number of weeks again.

Even sadder: we picked the original sleep doctor (this time) because we were told she knew N24SWD. She didn’t, really. But we were getting surer and surer; she didn’t listen. She pooh-poohed the idea, said the data didn’t confirm it, said the insurance company wouldn’t approve a longer trial of actigraphy, said it wouldn’t show the patterns if the okapi was trying to pretend it was a horse so as not to be completely isolated; this isn’t true: the 10 weeks data we provided, and the scientific papers we were shown, took this into account, and talked about people trying to live with N24SWD and a social 24-hour day.

We are incredibly lucky, too, that a researcher was located in Philadelphia, a reasonable driving distance for us in NJ. We are incredibly lucky that he picks up his own phone! – listened to me! – accepted the data we sent him – and had a spot for us within a week. And that he has two sighted patients, and knows of more, and knows the researchers working on the larger problem of N24SWD in blind patients, who have the scientific integrity not to just study the patients who might be helped by the drug companies supporting the research (blind patients) but sighted ones as well.

And that feedback I mentioned at the beginning?

We had submitted ALL of the available data (they went back 8 years, to the first sleep doctor when she was a teen who was tired all the time, and the first sleep studies; plus took an extensive intake interview – almost an hour on the phone – during which we emphasized over and over that she was rotating), submitted it to a ‘specialist’ at a major university, and he didn’t even say, ‘This needs further looking into,’ except to recommend another week’s data-gathering with an actigraph. The company wants feedback. I restrained myself. Their ‘analysis’ was useless – and set us back three months while they took forever to gather the ‘data’ and run through a couple of ‘specialists.’

I’m still trying to figure out how to give them ‘feedback’ when they obviously don’t listen.

* How do you find out if you have Non-24?

The gold standard is to wear an actigraph for long enough to show the rotating pattern. A sleep log will show the pattern if kept accurately.

But the easiest first step is to notice the rotation: always going to bed later (if allowed to), culminating with entire nights spent up; long daytime sleep (if allowed); inability to wake up; chronic daytime exhaustion; missing important things in life such as exams by sleeping through them; and the inability to just ‘go to bed.’

NOTE: Actigraphy is done with a special wrist monitor – expensive, and borrowed through the sleep doctor (covered by insurance if it covers sleep studies). Unless conditions are perfect, the two-week period doesn’t show enough of the pattern. Instead, we bought and used a Jawbone UP3 because my husband was able to download the actual data, and massage it into the same kind of graphs produced by the commercial device. It was non-trivial; he is the expert statistician. Okapi uses it routinely now – the Non-24 specialist appreciates the data.


If you like my prose, consider reading my stories – they are written by the same person. Free short stories here, debut novel on Amazon. I’m working on more.

Thanks to Quozio.com for the quote software used to make the first image.

You like a writer’s style and voice – or you don’t

PRIDE'S CHILDREN

let fiction bloomEDITING? REALLY?

Way back in the dark ages, I submitted the manuscript (digiscript?) of Pride’s Children to an organization dedicated to vetting indie novelists, and giving them a ‘Seal of Approval’ which could be used on the cover of their novel to indicate ‘quality’ or ‘goodness’ or ‘lack of indie crap content.’ I will call them XXX.

And then I forgot all about it.

I just received their reply, a reply to which I take a great deal of umbrage.

Here is their email:

Dear Alicia,

I regret to inform you that your book Pride’s Children did not gain XXX approval. Our assessor said that though the book had an interesting premise, it would need a thorough line edit before it could be considered for approval.

In particular, she found the following issues:

Extreme overuse of incomplete sentences to the point where it becomes a repetitive sentence structure.

Too…

View original post 666 more words

Amazon PRIME plus a Kindle equals a free book a month

Jan 2016 free bookFREE MONTHLY BOOK BORROW FOR KINDLE, FIRE OWNERS with PRIME

January 2016 is almost over – have you borrowed your free book this month? There’s a snowstorm on its way where I live (NJ), and you should make sure your Kindle or Fire device is charged up – and loaded with books – so you will have something to do if all else fails.

You do it FROM the Kindle; it’s on the list of options on the starting pages.

Many people have Prime – the benefits are significant even if all you do is order from them several times a year.

Many people either don’t know – or don’t remember – that one of the Prime benefits for people who own ‘a Kindle, a Fire tablet, or a Fire phone’ is the FREE ability to borrow a book from the Kindle Owners Lending Library (KOLL) once a month – and keep it until they finish it. (Not Kindle apps 😦 – it’s their way of making the devices even more attractive.)

Any book in a storm (if the publisher agrees)

The book’s publisher has to have put it into Kindle Unlimited (KU) for you to be able to borrow it (I have put Pride’s Children: PURGATORY in KU); the author will get paid for pages read out of the Amazon fund for that.

Books priced right make their authors about the same for a borrow as a sale – and it doesn’t cost you a penny.

READ A BOOK – ANY BOOK – (even mine).

And don’t forget to do it again EVERY month.