How NOT to treat disabled patients

Medical personnel providing a service.

JUST BECAUSE THEY ARE HEALTHY AND WE ARE NOT

When did things become BACKWARD???

When did THEIR time become more important than ours?

When did CLIENTS become patients?

When did their needs to be in control become more important than the clients’ rights to timely and adequate and compassionate service?

When did their convenience supersede ours?

When did taking care of disabled clients become a burden to them, an inconvenience to their mission?

When did their control become more important that our PAIN?

When did it become acceptable for them to frighten patients, to threaten them with dire consequences for not obeying instructions to the letter, to TELL them they will end up in the ER with a massive attack of something? (This has now happened twice.)

When did THEY end up with all the cards – and the self-righteous belief that they know best for OTHER people with REAL LIVES?

This is the letter I would LIKE to send to my medical services group – if I dare, once I have carefully weighed the consequences to my future treatment.

Think about that: I have to worry that they might be bothered by something I, the person responsible for paying them, might say. As nicely as I can.

First, though, I would like to say: don’t mess with a writer – they are good at nuance, both reading it and writing it. Not on the spot, of course – that’s for narcissists and sociopaths and politicians and comedians – but afterward, when they’ve had a chance to think.

And to realize what just happened.

And rewrite what you think just happened into the correct narrative that takes the CLIENT into account.

Except rewriting the narrative created by the thoughtless ‘professional’ requires 1) rereading it (I won’t – too negative), and 2) putting in an enormous amount of my own time – knowing it probably won’t work. Or change anything.

THE LETTER TO MEDICAL PERSONNEL AT XXXXX which I may never send.

Because I need some kind of medical care, and all of these are similar in that they think they know it all, and they OVERWHELM you.

My mind keeps nagging about the letter I should write to my medical providers about energy, visits to specialists, and fear-mongering. Which was applied to me, a disabled person, at the end of a too-long-for-a-disabled-person day.

And the tone of the after-visit summary took my breath away – and made no mention of or accommodation for that disability which caused so many of the problems.
Bullying a disabled person is NOT nice.

I will NOT have the procedure unless I decide it is necessary, there are several more worrying symptoms, and they don’t respond immediately to medication.
And do NOT appreciate how I was treated so cavalierly.

I need to write the letter so it appears in my medical record, and I can point to it, but I don’t expect it to have any effect on anyone there.

Do NOT treat disabled people the way you treat normal people – we can’t take it.

And no, it doesn’t NECESSARILY help to bring someone else along. Then I have to deal with THEM, too.

The calculus of what I can take vs. what I need is ongoing: don’t assume, ASK.

And more than asking, could you make a climate where I will think of asking myself, EVEN when exhausted?

Thank you.

CLIENT (person who pays the bills)

The above is not coherent – I’m still going to let it stand, because the incoherence is generated by the system.

I’ve let this one stew for almost a month, and I’m still angry. I was going to just let it drop, leave the unfinished post among the almost 100 draft posts I never finished.

Not naming names – and I’ve decided it isn’t SAFE for me to let them know what I really think, so I’ll keep tweaking the interactions (as in my previous state – which was as bad or worse) instead of taking them head on.

Other options to minimize the problems

One is to do as much as possible via video visits; those are usually on time, one-on-one because the provider isn’t popping in and out or pawning you off on a nurse.

Another – based on my last visit to another city for treatment – is to make sure you have done the paperwork part of a visit SEPARATELY via video BEFORE the in-person appointment. I find it a major problem to have filled all the paperwork before the visit, and to be grilled over every single thing in my medical history again anyway.

I will explain that it is very difficult for me to do BOTH in a single visit – and, by the time I get the service, I am exhausted and frazzled and not being as coherent as I tried to prepare to be.

LEAVE the minute it gets to where I can’t keep going. I keep trying to respect THEIR time, at the cost of trying to continue to talk and even be awake and coherent when things go on too long. Going back is not a great option, but maybe I can finish by video.

Stand up for myself in some small way each time.

Say, “This is not helpful.”

Risk being labeled difficult.

Complain to higher management – with specifics (respectfully – that writer nuance).

Suggestions?

Because the stress of doctor visits has gotten to the point that all I want to do is avoid them.

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Writing a silk purse from a sow’s ear

I DON’T WRITE CLEAN COPY

For my kind of extreme plotter, you might think everything would be planned down to the last jot and tittle – before writing.

It seems that way for some scenes I’ve written – I know exactly what I’m doing when I go in, and then I do it, polish a bit, and get out – and we’re done.

Because having the content and the outline and the knowledge of where a scene will go can make it easier to see what fits and what doesn’t, as I go.

Unfortunately, they’re the minority of my scenes.

Another set of scenes takes more work because there is a lot to include, and the correct path through all the necessary points can take me a while to organize.

And then there’s 32.2.

The sow’s ear of the title.

Oddly enough, a scene for which I had plenty of content.

But it came out of my head very oddly, as almost a single long piece of dialogue, a phone call no less, with the banter between Kary and her best friend writing itself as I eavesdropped.

Very realistic – I could SEE them talking, SEE the little connections, the friendship, the gentle poking when one person thinks they know better what the other needs, a scene you might overhear at brunch, or in a park, or while watching the children on the swings at the playground…

And it was wrong

Very wrong.

Boring – to me!

And I could see a reader doing the thing writers dread: skimming. Skipping ahead to see where the meat starts again. Not seeing the content because it was in the form of a dialogue between two women.

Just getting to the realization of what was the problem took me days.

Because there was nothing obviously wrong, and I write dialogue all the time, and it wasn’t particularly bad.

Good dialogue doesn’t guarantee great scenes

Almost a thousand words of good, realistic but compressed dialog.

You hate to give that up – and it took quite a bit of practice to be able to do that in the first place, create dialogue that gives the reader necessary knowledge in the form of a story.

I almost did what I never do: let it stand, leave it to the beta reader, move on and come back to it later, live with what I knew was highly imperfect (in my standards) because I had no idea what was going on that produced it.

But I did know:

The brain fog was thick on the ground and I couldn’t see over, through, or around it.

And this is what I produce when I can’t think: ‘almost’ writing.

It depended too much on the reader’s previous knowledge.

There was not enough scene-setting.

And it repeated things the reader already knew – a capital sin if done in any quantity: do NOT give readers an excuse to start skipping!

I bit the bullet, lowered the dose of a medication I thought might be the culprit for the recent fog increase (it was), waited for a couple of days until, thankfully, the head cleared.

Then I took all of the scene except for the initial paragraph, and put it in another file in the Scrivener project, fully prepared to dump the whole thing if necessary.

And I was able to get back to work – because I was darned lucky.

My greatest fear in life is that I will reach one of these points, know something is wrong, and never more be able to do what I’ve been doing to analyze, understand, and, fingers-crossed, improve what I’ve written, from the first gasp to the final zinger.

I’ve had this happen before to a smaller extent – I had to learn to write every kind of scene (and there are more kinds, I’m sure) – and since I’m still writing, have emerged every time.

But brain fog is more insidious than exhaustion, and you can’t just rest it away.

Brain fog scares me

It alters my essential self.

This time I found the cause, and it was something I could change. There are consequences, of course – in this case more physical pain – but I have other alternatives for physical pain, even if I’m trying not to use them (to spare liver and kidneys from having to disassemble those molecules and get rid of them); in the worst case, I can just tough it out, do some of the physical things such as stretches or (in non-pandemic times) immerse myself in the therapy pool’s warm water, wait until it passes if it has a specific cause…

Do not recommend your favorite remedy for brain fog – thanks, but I’ve tried an awful lot of things over the years that didn’t work, and I don’t have the stomach to try more. Assuming you even have one – brain fog is a particularly difficult ‘symptom’ to treat because it is so vague and amorphous and non-specific.

It’s a Catch-22: you need to be able to think to work yourself out of brain fog, and you can’t think until you’ve worked yourself out of brain fog.

Sometimes the passage of time helps.

Sometimes the disappearance of a physical illness, or its successful treatment or management, helps.

Sometimes – the scary part – you’ve lost that part of yourself and it isn’t coming back.

And sometimes you figure it out.

Once that cleared

I took a hard look at what I had been ‘creating,’ that conversation that repeated things unnecessarily.

And I got to work.

I went back to process: I’ve detailed my Left Brain righT method before; I still use it, tweaked a bit but usually to add a detail, not change something already there, seven-and-a-half years later.

Step by step I followed my own prompts for considering, choosing, refining – including much smaller amounts of that big chunk of realistic dialogue – listening to the bits as I locked them in (to make sure the language flows), defining the structure, doing the work I call writing fiction, and little by little, 32.2 emerged from the shadows of a disaster.

It started doing what it was supposed to do, and I got less scared.

Until the next time.

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Preparation and then things just click?

WHETHER YOU’RE READY OR NOT

And we are so definitely NOT ready.

But the last flooring was installed, the staging ladies have done their thing, and our real estate agent is now our real estate agent (all the advice up front doesn’t count until you sign on the dotted line – at which point all kinds of things start happening, like open houses and a lock box on your front door…).

We haven’t recovered from the trip.

We have no place for our stuff – the stuff we need to function as inhabitants of a house (where is my skillet, and how will I make eggs when the gas isn’t reconnected yet?). Which may be a problem, as the period between when you put a house ‘on the market,’ and the time when you are removing your last belongings so you can hand over the keys, is an unknown variable.

I don’t know where anything is

It happens to everyone, but it is especially hard to deal with when you have ME/CFS and daily brain fog: and now it’s far worse because some of the stuff in this house was put away by someone other than me, in a hurry, and without labeling either the box or the corresponding card in my card file. Or worse still, labeled as ‘miscellaneous.’ Aargh!

I located a few of the critical items in very odd places. Not sure I have everything I need, as distinct from the comforts, even yet.

And the dryer vent, taped by the painter, is loose – so I’m not sure I can do laundry (I’m living with the absolute minimum amount of clothes out).

Everything is to be kept tidy

And by ‘tidy’ we mean the way the staging ladies left it (a model home look), or restorable to that condition on short warning, when someone uses the system to ‘book an appointment.’ Aargh!

Meanwhile, we do have to be allowed to eat. Other Half and his good friend are down there trying to reconnect, safely, the gas to the stove.

But the forever home may be available soon

Don’t know exactly when, as they actually have to get everything they asked us for, and decide whether they want us. It is possible for them to reject us.

And it is possible for us to be legally required to leave our ex-home because it belongs to someone else after all these years, before we have a place to land.

It’s a first-world type problem – and I’m not whining – except complicated by my limitations. Residence Inn America for two months? We probably could survive. Rent or buy an RV? Ditto. I think.

So we’re adjusting.

Again.

And I’m marveling that I’m still standing – and taking a nap every chance I get so that I can be coherent for the next crisis event. Such as talking to the people at our brokerage (Vanguard) and being able to satisfy them that I’m me, so we could transfer money. By phone. Since the money has actually been received at the other end by the right people, I did it.

A bit nerve-wracking: you will be asked a series of questions, based on (?) publicly available information, and if you miss one, you’ll have to go the long route of being identified some other way. I’m still chuckling over one question about a boat we owned. And wondering where husband hid it all these years.

I love Vanguard. They get things done, and always have alternatives. I am currently furious at one of our banks for the way they made a decision (which led to the nerve-wracking phone ID). And at the other for the fraught way they handle wire transfers, as if you were a criminal actively trying to circumvent laws. Why is it that the people the laws are intended to protect always feel the brunt, while the people who should be caught and punished never even feel a thing? Being law-abiding is becoming more difficult every day.

There is a For Sale sign on my yard. After 37 years.

Life is interesting, but I’m finding the watershed point was signing those papers, and I’m strangely free.

That and the deposit wire-transfer going through on the same day is… unexpected.

Off to the Gray Havens.

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Flexibility is worth working through pain

IT IS HARD WORK TO STAY FLEXIBLE

To keep writing

Over this past week, while struggling with the chore of de-junking a house, divesting myself of decades worth of stuff, and getting my singing in, I have been physically exhausted (even though I direct the work, not do it).

The sleep I’ve been getting has been fractured, erratic, odd – and never deep enough.

So, the perfect time in life to take on another major task?

So, of course I did

As I mentioned in the previous post, I started a Patreon page for Pride’s Children; NETHERWORLD, Book 2 in the trilogy (see button on sidebar – I figured out how to have one with a link!!!).

Because, among other things, I realized that the moving tasks are ordinary. And while they need to be done, and every detail has to be supervised by me, and there has been a huge emotional content (you try capturing in a few scrapbooks about twenty years worth of homeschooling three kids!), it wasn’t hard, or tricky, or complicated, or complex, or even challenging.

Ordinary stuff. Every homeschooling family has tons of stuff to dispose of. Every family moving out of a long-time home has a lot of stuff.

But there is no great intelligence or problem-solving ability necessary; in fact, that gets in the way because methodical and utilitarian are the words that describe the process. Just do it. Make a decision: box it for the move, declare it object unnecessary, give it away.

What keeps your brain usable as you get older?

I’m convinced it is USING that brain, not letting it get fuzzy and lazy and go easy.

Starting a page on another platform for promoting your work – that’s complex and challenging. Patreon doesn’t make it particularly easy – I find a lot of applications which are developed for online and Windows use somehow seem to lack menus and a sitemap which works and guides that are more than basic – and I had to keep poking to find even rudimentary details. Such as which is the best way to get your money out (when you get any).

Inexplicably, for Direct Deposit via Stripe,  the payment page gave you a form to fill out which required banking information AND your Social Security number, but which didn’t mention fees.

And for Paypal, it listed some fees which could reduce your take.

Thus giving you the impression that even though Stripe usually costs money, the direct deposit part didn’t. Making it better than Paypal.

Stuff like that. (It’s not true, BTW. But you have to figure it out based on the amount being transferred, by going to the two payment methods’ sites and doing the mental work.)

Digging and logical thinking

It would be nice to have no fees to deposit your money earned into your bank account – Amazon does it, right? Amazon’s fees are probably included in their calculation of their cut – they just don’t break it out.

Doing this kind of mental work, hard, new, in a different and unintuitive (for me) format is worth doing – because it keeps me flexible – for the next thing that comes along.

I’ve found myself getting lackadaisical about learning tasks like how to control the network of TV and Netflix and Amazon video and Youtube – the spouse clicks thousands of times a night while organizing a couple of hours of something to watch. I let him do it, most of the time.

But watching TV is not my profession. Writing is. And I take it seriously for now, and as long as I can do it. And it changes continuously, but no one is going to make it easier for me.

So I charge in, do the work, maintain the flexibility to attempt and conquer the next challenge, and revel in the ability to still master the new.

It’s exhausting – and necessary.

And then there’s all the daily physical exercise

Which keeps the physical pain under some sort of rough control, so I neither take too much additional medication nor sit here in a haze of pain, unable to think.

But physical pain is boring. Not intellectually challenging.

So I’m not talking about it.

But I gotta get my mental ‘steps’ in, and push that to the limit.

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Do you find yourself slacking off when there’s something new to be learned? Are you conscious that you’re passing up opportunities to keep the ol’ cerebrum functioning? Are you making an actual choice?

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Don’t forget to visit the Patreon page  – the first chapter’s on me (pages are public), and you don’t even need to figure out how to create an account, and then have to close it. Feedback welcome, whether or not you will use the platform to read.

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The major stressor and the Gordian knot

SOMETIMES THE SOLUTION IS OUTSIDE THE BOX

Things get tied in knots; sometimes the only solution to a bad marriage is a divorce. But that applies in other situations:

Teacher/student – this teacher has it in for your kid, for whatever reason, and the only way the kid will survive is switching to a different teacher, or a different school.

Parent/child – the child must leave home to get away from a controlling parent OR the parent must eject the nestling which has turned into a cuckoo bird and is eating the family out of house and home.

Boss/employee – leave that job, if you can, before it eats your soul; fire that employee before she sets the factory on fire.

And one I’ve done once before, in many years in the system: if the main stressor in your life is a particular doctor, switch before they stress you into the heart attack they think they’re protecting you from.

The signs were many.

Doctors have different outlooks on life, differing way of using ‘guidelines,’ different bedside manners.

Because change is so hard for me and others with ME/CFS (usually entails MORE doctor visits, transferring of many records, finding the new person, hoping you don’t have an emergency until you’re comfortable with the new one, getting them to read all your paperwork…), we often stay too long with one who ‘at least fills out the Social Security paperwork.’ I don’t need that any more – but worrying about blowing a gasket (ie, stroke) from an occasional blood pressure spike is a sure way to spend your life worrying about your pressure, which RAISES it.

I had reached the point of considering my home BP measuring device an additional stressor, and the taking of the BP another. But I have friends who have had strokes, and it ain’t pretty.

It reached the breaking point a month or so ago when something (I have an idea now, but no proof) led me to have a BP spike DURING my semi-annual cardiologist visit, in their office. ONE measurement. They refused to take it again (to see if it would be coming down), and instead went to full alert.

Full speed ahead, man the torpedoes!

To make a very long story short, after having an abysmal experience with – and stopping after ten pain-filled, zombie-brained, gut-wrenching (lit.) days – another BP med, I switched cardiologists – to the one I just saw (and had met during one of my hospital excursions and noted he was a breath of fresh air then).

He says, not only don’t worry about it, but don’t measure it! He realized the process had become stressful, but that my record of measurements didn’t show a real problem. He suggested, since I need salt to maintain blood volume, and don’t follow a low-salt cardiac diet, that I might have had too much some night (yes, yes, yes! very possible – when I add salt to the occasional popcorn or nuts!). NO ONE had ever told me it could set off a spike.

He actually listened to my difficulties with tolerating meds, said I’d tried most of the first-line ones, and reacted badly, and that the next line of them would likely have even worse side-effects. But that he didn’t think I needed any.

I see him in six months, and the largest stressor on my list (death due to not taking the doctor-prescribed cardiac meds) vamoosed in a puff of smoke. Plus the secondary stress I was also ignoring: going to that office and that doctor. It’s subtle.

Changing was the right thing to do – and a serious object lesson: listen to your stress level. If a doctor constantly puts you on red alert, consider whether this is the best doctor for you. With the other one, I felt every time that I was defending myself from being put on medication I didn’t need.

Such a relief: I agree.

I should have listened. To myself. We’re not all alike; neither are they.

I was just worried the first one would prejudice the second one, and I would then have to go far afield to find… You can always stress yourself out.

And I learned that the salt I need may cause BP spikes. Good to know – will watch that more carefully.

I write today in Uttar Pradesh

THE MOUNTAINS I CAN’T CLIMB ARE MINE

Years ago, when I set Pride’s Children in 2005-2006, I worked out Book 1, PURGATORY, in a little more detail than the remaining volumes of the trilogy (there being only so much you can carry in your head at a time, and Book 1 was quite a lot to handle).

I emphasize that the rough draft was complete, Book 1 to the end of Book 3. I know what is happening – I’m an extreme plotter, and little of importance has changed since 2000.

Some of my research has come back, not so much to haunt me, but to challenge me, as I work through turning an unbelievably rough first draft (don’t be fooled by the perfect spelling, and all the punctuation marks being in their places) into the final draft, a one-step scene by scene process for me.

Victory after a month?

I finished a scene, which took me over a month to write, yesterday. I listened to it (one of my final steps) and declared it finished to my exacting standards (hehe), posted in my victory journal, and started working on the next scene immediately.

And immediately ran into a road block at a deceptively-simple plot point:  What time do we leave the hotel in the morning?

Did a bit of quick research on distances, times, and roads in Uttar Pradesh, India, and realized I had a whopping big plot problem.

One part of the research held: I had changed the date of the scene by three days, but the sun still rose within two minutes of my original date. Don’t laugh at me – it’s a plot point, and I pay attention (so the readers doesn’t have to) in great detail when I can. I think I need that degree of detail myself, when writing, to fully go somewhere inside my head which I can’t go to in reality because of time or distance – or because it’s in the past.

Research tools have changed

But when I wrote the rough draft, I was not concerned with details of traffic and distance in India. I did a quick pass, found the things I needed, figured I could nudge or hedge enough to make it work – after all, the scene had bridging a time and spatial gap only as a minor part, and moved on to the more important character plot points.

Today, I had to pay for that.

I had to have characters be somewhere at that particular time – which meant they had to get in a car at an appropriate time, and go to bed at a time which went with the rest, and have dinner first (all of which should be transparent to the reader), and fly in from the other side of the world.

Google Earth: villain and hero

Google Earth showed me it wouldn’t work. Not as I set it up originally, because they do such silly things as calculate how long it will take you from Point A to Point B at a PARTICULAR time of day on a day which might not be in 2005 (that calculation is lost), but can be extrapolated, with some care and patience, from what it might take today. Or next Tuesday.

It’s designed for commuters and tour guides. It is amazingly useful for me.

I hope some day to have a host of Indian readers – it’s a huge market of English speakers which has been barely tapped because of other problems such as rural electrification, vast population density, and its immense size. But I’m not going to be successful with them (assuming they actually like and read my writing) if I mysteriously shorten the distance between two Indian cities in an area where people actually know how long it takes to go from one to the other. The suspension of disbelief will go Poof!

There are many side benefits to spending time with errant details

The area is more real to me than ever before. And it was pretty solid then.

Other details that are important – and peripherally hooked in – such as who sits next to whom during a conversation, suddenly have answers from logic, not imagination. Thank goodness for real-world anchors occasionally! It gets a little rarified in the cloud-cuckoo-land of making it all up as you go.

And because I started Pride’s Children to tell myself a real story, real in the sense that it could happen, not necessarily that it did, I can believe my own lies.

 

Life happens in between story moments

FENCE, WALL – THAT WAY IS BLOCKED

Where is the rest of life? FRIDAY

One illusion novels maintain is that nothing of importance happens in the moments the writer chooses not to present on the page.

I bank on that bit of prestidigitation myself; I’m not against it, but I have to remember to consult my story calendar, the plot, and logic, when I fill in one of the prompts I always use:

Timing considerations: Since last scene, or last scene for this character, what has changed/happened? Does it make sense? Does it have conflict opportunities? Does it have to be dealt with?

A novelist fills the gap with a word, a flashback later (if the reader is lucky), or a jump cut, simply switching to a new scene with the assumption that readers can figure it out.

And we do. Movies no longer need those silly calendars showing the pages blowing off – we get it.

There is still, in most novels, a sense of moving forward in time, and not bothering to document the smaller bits that make up existence: characters eat, take a taxi, work.

But readers have an innate sense of when an author left something important out. The reader’s mind goes, “Huh?” Too many of those, and the reader is no longer interested in the story because, truly, there isn’t one.

We’re watching a couple of streaming TV programs: Hinterland (set in Wales) and Crossing the Line (set in Europe), and have these little discussions about linearity of plot, because either they do things differently on the other side of the pond, or we’ve lost some important ability, because we don’t get things much more often than we expect not to understand.

It’s a minor annoyance when watching TV, and my guess is that something got cut between the script and the final edit – different people doing the work? The shows are atmospheric enough to carry through (though the first seems both skimping and padding because I think I could cut it from 90 to 50 or 60 minutes and it would be improved considerably).

Life is boring

And full of little details – things which have to be done – but which contribute nothing to the eternal verities. I spent my good time this morning talking to online pharmacy and doctor’s office personnel – and got no writing done. Eventually, the pills I depend on may make their appearance, and I won’t be in so much pain I can’t think, much less write. As many of us are finding, those drug-seekers out there (some of which are probably just getting crappy medical care, and are experiencing pain they should be) are making life much longer and more boring for those of us who are trying to follow the rules.

It’s always so: the rules are tightened, but the people who are breaking them aren’t affected, and the ones who were not doing anything wrong have to deal with more paperwork.

This makes the future scarier

I can sort of cope now – if I don’t do anything time-wasting such as trying to concentrate on my writing for a few hours.

Some day I won’t be able to cope at all, and someone else will have to do this stuff for me, and they probably will neither do it right nor efficiently, and I will have no choice but to suffer the consequences.It is laughably difficult to leave instructions for such things as “don’t feed me carbohydrates,” or ” I can’t lie comfortably very long on my left side without a VERY thin pillow under me,” or “I HATE raw tomatoes.”

I hope that doesn’t happen too soon.

Meanwhile, I cope day-to-day

Badly, because my coping skills are somewhat age-dependent, as everyone’s are, but much slower than most people’s to start with.

I really thought I’d be further along – that I’ve learned to gather the input for a scene faster, and turn it into prose faster – but it isn’t even keeping up with the increased pressure of “thing that must be done.”

The big ones

Settling my parents’ estates and filing the required tax returns – an exercise quite pointless, as there will be no tax money in it for the government.

Finding a retirement community – I have realized lately that financial information (ours and theirs), and knowledge of floor plans and meal plans, is barely the beginning. As I dig deeper, I find the questions of medical care when you can’t navigate it yourself, and even simply paying your bills in that condition, are much more important. And we haven’t even STARTED visiting the Assisted Living and Skilled Nursing components of the Continuing Care Retirement Communities (CCRCs), which are looming as more and more important to choose correctly from the beginning, because you’re going to end up in them if you live long enough! And you will not be gleefully looking forward to moving in to them in most cases.

Dejunking this house/Selling this house – a difficult pair of things to do requiring millions of decisions which we can repent of at leisure.

And the very worst of all

I resent not being able to work myself out of the current many holes. A lady doing the fast walking jog many people think is called ‘running,’ but won’t mess up her hair or get her too sweaty; the man with the white ponytail and the limp who goes out for a painful walk regardless of the temperature or conditions most days; the children – especially the one little grandson who spends HOURS trying skateboard tricks or shooting baskets when he visits next door – all these people are ‘working on it,’ my standard response when asked about anything, but they are actually working on something.

Me, I’m stuck. I get one little thing done, painfully, and the ‘things needing doing’ merely provides the next customer in a Black Friday-long line.

I gotta get out of this place, but it may end up being the last thing I ever do, at this rate.

I make a list, read it, pick one thing to do. It is the A1 now, and the system is to get it done, because it is the log that is holding everything in a jam. But I’ve been telling myself that for weeks, months, years – and it’s a lie. There’s always another. When do you know if something is real or just depression talking?

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What’s the answer? Is there a solution? SATURDAY

I’m hoping so. I’m hoping it is to focus on all the little good pieces:

the last message from the online pharmacy was that they had approved my prior authorization – without any further calls from me to them OR the doctor’s office; they may even manage to send me my perfectly legal, non-narcotic, non-opiate pain pills without me having to chase them down, and possibly even repeat that twice more in 3 and  months. Meanwhile, I pray the generics figure it out.

I am much further along in the estate-settling – and can’t do anything further this weekend; I hope I have figured out the way that doesn’t require exorbitant taxes.

I think that ‘we have to get out of this place’ has finally penetrated – we’re both quite tired of the continuing stream of maintenance, and the computations are almost done; a trip to California may be in the offing (let’s hope I survive!).

I may have located the cause of a couple of physical problems – that would be a lovely set of things to remove from my life.

And my standby solution – rest and reset the brain – still seems to work. Happy weekend – I’m going to go use it now.

And maybe one of these days I’ll learn to advertise…

One for my side: Google confirms I can spell pretidigitation and know what it means!

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How’s your weekend going?

And thanks again to Stencil for the ability to make images out of thin air.

Writing in a niche market is fraught

AND CAN BE VERY HARD ON THE EGO

When feedback is rare, because, as an author, you haven’t ‘taken off’ yet, the individual pieces that come your way can carry far more power than you expect. And do more damage, or, in my case, make you a lot more stubborn.

What is the niche? INDIE NON-GENRE fiction

Classified – or should be – as General Fiction, ‘literary’ only if the quality is up to the standards of readers who specifically choose to read literary fiction (and omnivores).

That quality is subjective, to some extent. There are so many ways for a novel to fail, from poor characterization to too much characterization, from implausible plot to none at all, and from the habit of stopping the story for minute description of details to an overreliance on flowery language.

I amused myself for a while reading the negative reviews of popular literary fiction, until I realized that the authors were doing quite well – and their fans often didn’t bother to leave feedback (how many ways can you say ‘I liked this book’?), but their detractors did, so the ratings tended to be skewed.

These authors long ago learned to ignore the critics, write the next book, and feel confident it would be bought in reasonable numbers.

I have not. Yet.

Stubborn I have been since a small child

I was the kind of ugly duckling people hesitate to pick on. Unkindnesses were not uncommon, but outright bullying requires the consent of the bullied – or their physical inability to resist – to work properly, and that was not me.

I had a family to back me up (“our ugly duckling, right or wrong”), who loved me and still do (thanks, guys!). I didn’t have any of the easy pickings, gayness or excessive weight (though I was on the stocky side) or scandals in the family or dimness. It wasn’t much fun to pick on me, if I even noticed it, so I was mostly left to my own devices.

And I didn’t CARE about other people’s opinions (except my parents’). We felt we had the best possible parents compared to all our friends, so it was a serious failing not to be up to their standards, and we tried very hard

Why mention this unlovely trait? Because it affects not my writing directly (I’ve pretty much settled into a voice and style, at least for this set of books), but my mood.

Making my mood conscious, and then removing it if inconvenient, takes up some of my daily time. Sometimes the process results in reflection, and you get a post.

I’m trying to improve both sales and reviews/ratings

The plan was to have Pride’s Children: PURGATORY selling quietly at some rate in the background, with borrows from Kindle Unlimited a separate small stream of income, justifying the writing.

I tell myself that writing is a business, not a hobby. One may become a talented amateur painter, for example, but no hobbyist-painter spends every possible moment painting.

The difference is both the intention – and the time and effort put into the endeavor.

Which has led to me spending time looking at the means for promotion available to those pesky self-publishing indies.

That’s where the niche part comes in.

If you write, say, Science Fiction or Category Romance, you have a lot of company (writers) and a defined (and large) audience of potential readers. Within these genres, there is a sense of camaraderie, and a sharing – on the indie side – of information about which means of promotion work, and how to go about them.

What works for INDIE GENRE promotion?

I am well read on the methods – indie writers are very generous with information.

Nothing is a slam dunk, of course – people who think you just throw a book together, repeat at three-month intervals, set the first book to permafree or 0.99 and pay off your mortgage, find the field harder to plow than they expected. There is work, and savvy, and exploiting the available avenues, and marketing, and spending your money wisely on ads and promotions.

But a new indie writer – or one tiring of the traditional dance and swallowing her distaste and trying self-publishing (usually because traditional publishing has huge problems for genre writers, including skimpy advances (if you get one at all) and very low royalties) – finds many ideas to try.

Follow the methods. Write your books. LEARN. Cross-promote. And if you’re energetic and confident and prolific – and can write worth a damn, especially within genre conventions – you can make a career.

Stealing fire from the indie gods

I’ve been reading all this since I started reading the self-publishing blogs in 2012, and educating myself to the business side of writing.

And every thing I read was cause for reflection – and me looking for the other side to the idea, the one that might work for me. Because I knew, from the very beginning, I was different.

I doubt traditional publishers would take a chance – that pesky heroine, and some of those ideas – not at all ‘more of the same.’

And I also knew that ‘prolific, ‘energetic,’ and ‘genre conventions’ were not going to work for me.

I have been welcomed in many places, even as I bring in my weird differences, simply because most indies are welcoming people. Their success doesn’t depend on keeping me out of a traditional publisher’s catalog slot. We are competitors in only a very general sense.

The one I am trying now has to do with Amazon ads; I’ve joined a FaceBook group whose purpose is to learn how to master Amazon ads in two ways:

making you comfortable with advertising on Amazon – and teaching you how to create the ads, and

fine-tuning the ads to find a comfortable rate of return for your advertising dollar.

The people I share this group with are mostly indie (a few hybrid authors do traditional + self-publishing). And most of them are very firmly genre writers: thrillers and cozy mysteries, paranormal Romance and Christian Romance, SF and fantasy.

I haven’t found many ‘literary’ or mainstream or general fiction authors identifying themselves as such. So I’ve been mostly alone in my plan to see what I can adapt from genre techniques of marketing, reading every post with the intention of turning it on its head if that would help ME.

The HOW

I have a very specific set of techniques in my plan.

It may not be doable.

It may be doable, but so expensive that it’s not worth it.

I won’t share unless it works, because the techniques are also very frangible and friable and delicate. I can see them working – and then not working if even a relatively small group people decide to try to follow suit.

What I’m NOT happy with

This is the hard part, and I’ll illustrate it with two bits of feedback I received in the past two days:

Negative:

Readers’ Comments

‘Interesting in many ways. The characters have considerable
depth and the plot is interesting. It could do with a good
editor in parts to ‘cut it down’ a little. Also, parts of it
are difficult to follow. I had to re-read the first chapter to
understand all of it. But, if you are prepared to work, you
will find here a fascinating story populated with strong
characters. Just a note, the cover’s a bit flat.’ Male reader,
aged 42

‘Powerful characters – yes. Interesting plot with plenty of
twists – yes. Well described setting – yes. Very complicated
and a hard-to-follow writing style – yes. This probably needs
an editor with a red pen to cut it. If that happened, it would
be a top-notch EPIC!’ Female reader, aged 56

‘A bit too ‘wordy’ for me. If you read it, have a dictionary
handy. I’m guessing this was a huge job to write. And for
this, I congratulate the author. Her knowledge of her settings
and characters is stunning, and the illness of the author is
well-handled and adds a further element of interest. I enjoyed
it, though it was a rather exhausting read.’ Female reader,
aged 59

‘The stream of consciousness is interesting but killed the
book for me. It just over complicated the story and made it
difficult to follow. Personally, I would encourage the author
to cut the length of this story considerably. The characters
are interesting and well-handled, the plot is powerful with an
excellent ending. It just needs editing a little.’ Indie
Publisher, aged 51

I.e., Change your writing – it’s too long and too hard for me.

Positive:

Thank God for positive!

I have long finished your book and loved it. Loved it loved it loved it. It was entirely to my taste. “The Essex Serpent” had this kind of pacing as well, and I found myself absorbed in the balance between internal monologues and external events. I ended the book wanting to know what happens to Kary, Andrew and Bianca next.

I.e., I like it the way it is and want more.

Why point out only some people like it?

Because when you write to a niche, but there is a much larger pool of readers who won’t like what you write, or won’t quite ‘get it,’ you have to be very careful NOT to attract those other readers – who will then leave the exact kind of reviews you don’t want to be associated with, lower your rating, and attempt, in their kindness, to ‘fix’ you and your writing.

And when the readers you DO want to attract by your ads are firmly convinced that no indie author can write the right kind of novels, because if they could, these writers would go through the traditional gatekeepers and be blessed and vetted, the least thing can scare those readers off from even trying to read your book.

Ergo, fraught. Writing in such a niche. And even more fraught, is trying to find a way to do it indie anyway, including advertising. And still find readers.

The topic is esoteric to the point of madness

For which I apologize.

But I had to find SOMETHING to do with the feedback which showed up in my inbox, and with the well-intentioned comments (change your price, get a professional to edit your work, get a professional to design your cover, make it shorter, CHANGE your book) which has been my fare lately.

So I share it with my friends.

You’re already used to me.

How to pick a forever home

CHOOSE VERY, VERY CAREFULLY!

I’m in the middle of a huge search.

For a while now I have been staring the rest of my life, so to speak, in the face.

It has become – even before the events earlier this year which resulted in three stents – very obvious that living in a 4-bedroom, 2.5-bath NJ suburban home was becoming untenable.

Like the older pet which needs to be rehomed so it can live out its remaining days in relative peace, I can’t handle the little I used to be able to handle of my life – without some major changes.

ALL OF THE FOLLOWING ASSUMES YOU HAVE SOME CHOICES.

When you have no choices to make, you live the best you can, going along from one step to the next as well as you’re able. Your choices are dictated by the moment, by an illness, by something external you have no control over.

To a large extent, this depends on prior choices – did you take care of yourself physically? And did that work for you? Did you put some money into savings – assuming there was some to spare? Have you invested in a house which can be sold now? Are you able to move if that’s the best choice, or does something anchor you in place?

If you are poor, your choices are limited all the way along life.

If your health is not good, your choices are extremely limited. I’ve dealt with that one myself for 27+ years, with no end in sight; any change in that part of my life will be created, within the disease of CFS by me, and without, by some unknown researcher some day. Even if a cause and treatment are found, or a treatment only, there is no guarantee that it will reverse the damage I live with. Me managing like crazy, just to stay on a slowly-declining plane, is already doing the best that I can.

If life is unkind, you are already stuck, but there may be a possibility of becoming unstuck some day.

Facing the facts in time

Many people wait too long to make the decision where to go, what to do – and end up making that decision by accident, when a life crisis comes along.

Friends of my parents gave me a model. I didn’t understand it at the time, since they were living in a fair amount of material comfort in Guadalajara, but they went and bought into a community in, I believe, El Paso, TX. J at least was an American citizen, and one or both of them would probably have had Medicare by that age, and possibly they wanted to be in a place with access to American hospitals and healthcare. I know none of the details, but it seemed odd at the time (my own parents didn’t do the same, due to large extended family in Mexico City, and more limited funds) because of their family in Guadalajara, but now I see they were making a decision for a whole bunch of things while they were still capable and competent to make those decisions.

It has stuck with me, even though it has taken until the last couple of years for me to see the why.

I began four or five years ago to seriously consider the future. The kids were not all launched, but that time was coming closer.

I remember pointing out the advantages to a planned change – rather than a chaotic one induced by circumstances – to a colleague in a support group who was older, and whose wife was older, as well as to family.

No one listened; and the colleague’s wife now has advancing dementia – making it very difficult for him to move, for her to adjust to somewhere new, and for her to help in the decision and the move. Family has reached a different solution, and it was as a response to crises, just as I predicted, crises that might have been avoided.

The stories are everywhere: people whose parents refused to ‘be put in a home’ until a major illness or crisis caused a non-optimal solution to be hastily implemented. People who didn’t move until one of a couple faced significant health problems, at which point it was too late to enjoy the move.

We are fortunate to have options

Which is almost funny, since the story of my life lately is that I’m completely out of options.

I preach the necessity of disability insurance, if it is at all possible (and recommend you pay for it yourself – which has huge tax advantages if you need it), because you are five times more likely to become disabled during your working years than to die – and everyone has life insurance, but most don’t have disability insurance. Private disability insurance goes beyond SS disability (which is downright stingy): it kept us middle class when I became unable to work.

Consider also the possibility of a disability lasting long enough that you really need some built-in inflation protection. I had none, and it really hurt.

I would have been able to save more money had I worked. I prefer working – keeping myself sane these many years has not been easy.

So, facing the decision of what to do with the rest of our life is happening with me still sick, but with some retirement accounts and a house which can be sold.

The parameters to the decision

I am fortunate to have a living spouse in reasonably good health – right now. In fact, I would like to preserve that health: when he goes out to clear the snow or mow the grass on a hot humid day or prune bushes standing on a platform, I worry. I used to help with the snow – can’t do that any more (but he FINALLY bought a snowplow). I used to do a fair amount of the weeding – can’t do that any more, because sitting on the ground or a low chair or bending over cause significant pain over the next couple of days, and that heat and humidity are probably what landed me in the hospital this last time.

So he’s doing ALL the work, and even with some help from an assistant, he’s still IN CHARGE of all the work. We had people last year; they were ultimately unsatisfactory.

Taking care of house and yard consumes too much of his energy, all of mine, and just has to be done again. That doesn’t even take into account ‘things that go wrong,’ such as the roof or the AC or the driveway or the trees that die.

So, the obvious is a place where we do none of the maintenance work, in or out.

Another stressor has been how hard it is to leave the house to go somewhere for a vacation, added to how long it takes us to pack – and leave the house so someone else can do the bare minimum. Homeownership had its joys when we did everything ourselves (BC – before children); then it became just work while the kids were home and things got done when they had to be done, in among all the other chores; now it’s impossible.

Pet care – you’d never believe how hard it is to take care of one tiny chinchilla, and how difficult to arrange for someone to keep her alive while we’re gone. Impossible without an assistant (thank goodness I have one now for a few hours every week), still tricky even with someone who potentially can drop by every couple of days to make sure Gizzy has food and water and the AC hasn’t died (if it gets too hot, she won’t make it – that thick silky fur coat). Already seriously considering finding her another home (anyone want a slightly spoiled chinchilla?), and am making sure anywhere we consider allows pets in case she goes with us.

These will be the best years we have left

Seems obvious, but we’re not getting any younger.

I want a place where I can make the big push for 1) getting as much exercise as the CFS will allow, 2) making the best use of any improvements in walking ability, 3) hoping that reduced stress will contributed to better overall health and mobility.

This means I need a year-round pool and gym, and PT people on-site, somewhere I can actually get to without spending a day of my energy.

And we need bike paths. Even though I can’t go far, not being able to walk doesn’t mean I can’t ride a bike! My limitation is actually the energy – I can go short rides, hope to be able to increase those a bit.

And I want good weather: in NJ, if you miss a ‘good day,’ there may not be another for a while. I grew up in Southern California and Mexico City, where weather was a stable thing, and the next day would be much like today, and both would be pleasant. Then, going out to do something will be governed by whether I have the energy today, not by whether it’s feasible!

I require a heated year-round pool. No quarter given on this one: I’m a water baby, even if I’m not actually swimming, and I’m not moving somewhere for the rest of my life that doesn’t have a pool. Not happening.

I tell the spouse that the next 5-10 years of our lives are the good ones – and if we are to do ANY traveling, it will be now. I want to see my mother and my extended family in Mexico, possibly at family reunions in Michigan. I want to go to the beach in the Riviera Maya or in places like Acapulco and Huatulco, which have warm ocean water in the winter. Because I know I can do these – at my extremely slow pace (once I cope with a week of packing and survive the week when we come back). I want to spend time doing a vacation with the kids while it still is fun for most of the family.

The solution? I’m working my tail off to find it

California has, at last count, 102 CCRCs (Continuing Care Retirement Communities) – places we can move to and get all those things above.

Some of them are unsuitable because they are retirement communities for particular religious groups we don’t belong to; others are urban and have no pool; still others are way too expensive for us (I’ve eliminated all the for-profits). Some would make it difficult for me to get to the gym or pool – my time being coherent is also limited, and the more energy I expend in getting, the less time I have for the activity; the independent cottages, ‘just a short walk away,’ seem, by definition, to require more health to get to the pool or gym – I believe an apartment in the same building as the facilities is my best option.

The CCRC concept is doing well. It is recommended you stick with places over 90% occupancy (proof of continuing fiscal responsibility), but when a place is 98% full, by definition there are few units left! People move on to assisted living or nursing home care (a CCRC by definition has both available to its residents when they need the next step), and some pass on, but the rates are not high, and I’d like to move fairly soon (once the pesky house is dejunked and sold).

It is a lot of research work and no one can do it for you. Not really. I have spent hours talking to nice sales and marketing people – only to hang up and realize there is no way we can afford their lovely CCRC. The main reason: they don’t put their prices on their websites (probably because then people won’t call and talk to the nice salespeople), but it is inefficient and wearying when you really do know how much you can afford and what you need, which most people on this search don’t yet. A tendency to put information such as ‘apartments start at…’ out for view means people think they might be able to swing it – and then can’t when the range of prices becomes known.

Don’t cry for me, Argentina

I’ll figure it out. We’ll pick 5-8 of these places, and then take ‘the trip’: stay in a few, see the physical plant, smell the nursing home portion (apparently, that’s the biggie – clean places take work and money), and have lunch with some residents in assisted living to see how they are really living – and being treated.

Then we will make a decision, hope the house-selling sill support that decision, and spend an enormous amount of my good time – and all of husband’s – actually doing this.

The average age of entrance used to be 80; it’s already dropping as people realize they can’t live worry-free if they have a house on their hands. Even with a lot of money and a lot of help, it’s a constant set of chores.

Think about this sooner, rather than later, if this kind of solution to our common problem appeals to you. Time goes by much faster than you expect.

Wish us luck (even if you would never consider leaving your home, or living with a bunch of strangers horrifies you).

 

 

I have weeded for the last time

FEELING FOOLISH IS NO EXCUSE FOR TAKING RISKS

This may be a bit incoherent. I’ve had a rough week again.

As you grow older, there is an interesting concept of trying to identify when you do something for the last time, and whether that last doing is bittersweet. I have weeded possibly for the last time, because the personal cost was too high.

As someone who has so little functionality, these events have been coming at an accelerated rate.

I fight back. Try to continue doing things. Try to pick them up again when I haven’t been able to do them for a while.

During the spring, I weeded when my assistant was weeding, both to show her what was a weed (she’d never had a garden), and to do a bit of work that I used to love on my own garden. Several times I overdid it, and was stiff and sore for several days after.

Does weeding cause chest pain?

On Monday, with my brand new WORKING heart rate monitor, I did exercises up to the limits, which I hadn’t dared to do with an erratic old monitor.

On Tuesday, I spent maybe an hour outside, lying on a boogie board, pulling weeds, while husband and assistant pruned bushes. It was doable. I’m so proud of my ability to sit on the ground, and get up and down, that I overdo it. And it was nice to be out of the house. And not TOO warm, I thought.

On Wednesday afternoon of this week I asked myself:

Today’s contretemps was that I did exercise to a higher level (new HR monitor – this one actually works and displays continuously) on Monday, and weeding on Tuesday, and last night felt very odd, and have had the shakes, and a high BP, and a lot of (most probably muscular) pain, including in the chest area – because I was foolish enough to do my weeding while sitting/lying on a mat on the ground.

That may have been my last weeding, ever. Sigh. I love tending the garden, but I can’t afford the after effects.

Or it could be more of the other – and I’m fervently hoping it is not.

I may have to see someone and talk it all out – the hospital and stuff came back very vividly during this ‘episode’ – that’s what PTSD does.

I don’t mind the fuss IF there’s something wrong that needs caring for, but I really don’t want to go through it again unless strictly necessary, and I can’t tell. So the anxiety level is higher than I’d like, and I kept husband home from this morning’s bike ride with friends – and then spent the whole time asleep, because I didn’t get a good night’s sleep.

The perfect storm: adding small effects to get a scary one

Wednesday night, after a bunch of stuff, we went to the hospital.

Because the BP was increasing all evening. When it hits 200+/100+ I get nervous.

Because I felt unwell – shakes and chills (part of my normal temperature control problems, but were they at a higher level?).

Because I was out of it – not myself – not thinking clearly.

Because the stiffness across the front of the chest would not go away or yield to stretching. Not so much pain as incredible tightness.

Because, when I was weeding, it was much hotter out than it had been. I had a can of soda when I came in, but that’s all.

Because, apparently, I stopped drinking water, with the absurd idea that if they needed to do a test, not having water in my stomach would mean they could do it the same day instead of making me stay overnight (like last time).

You go to the hospital if you’re really worried it’s serious.

I should have known, when we went at 9PM, that something was wrong because I needed to use the bathroom as they were taking me to a room (after an ‘abnormal’ EKG) but nothing happened.

Of course, they don’t let you have water in the ER – and once you’re there, you do as they want you to do. So, as the time passed, I got more and more dehydrated.

I should have known when they said the veins on the back of my hands were standing out very well, and would be easy to draw blood from. But none of my veins, usually so cooperative, were easy Wednesday night.

When they gave me some water a bit later, I was able to produce a sample – but didn’t do a very good job of it.

I have learned this year to advocate for myself better

They came to tell me that they were admitting me. The older you get, the more risk factors you accumulate, and they want to be careful.

But they also told me both blood and urine showed that I had a massive infection, and they rolled in an IV bag of an antibiotic I’d never heard of.

I stopped them. I asked, since I had no UTI symptoms, whether it wouldn’t be better to wait until we were sure, and how long I would be okay postponing an antibiotic if I needed it, and they were willing to wait until after tests the next morning when I explained that I overreact to drugs and was worried about side effects. The nurse said the main one was diarrhea – but they could give me a probiotic for that. And seemed taken aback when I said that would be TWO new drugs for me, and I would rather wait until after the test. She said, “But it’s just a probiotic.” I explained they’ve made me sick before.

So I spent the predictable night in the hospital, disturbed every time I started getting some sleep, with a roommate who had a sister – they talked softly most of the night, but at least I was on a heart monitor, and someone was aware and available.

I asked how to stop the bed from automatically changing its setting every time I got slightly comfortable. I was told the only way was to unplug it – and lose all capability of adjusting it at all. I unplugged it. Horrible lumpy thing either way.

Once I realized I was dehydrated, I poured glass after glass of ice water down my throat. Made for a busy night, but it scared me that I could let myself get so dry and not even have an idea it was happening.

Vitals and blood tests through the night gave them data. The morning BP was normal!

I got the nurse to order another urine test, and made darn sure it was a clean sample. When they finally sent the results back, the evidence of bacterial infection was minimal. In this light, the extra white blood cells in my blood – the same on sequential tests – was labeled ‘mild’ and, since it was not increasing, deemed not worrisome.

So I let them keep their antibiotic, after worrying all night about having delayed the START of the antibiotic if I actually needed it.

My new favorite cardiologist

At half past ten, the cardiologist (another new one from the same practice) came to talk to me. He said the EKG was abnormal – but the same abnormal as my EKGs have been since the stents, so nothing to worry about. He said the monitoring all night long didn’t show any problems. He said the sequential tests for cardiac enzymes in the blood was negative after two tests, and that should be enough, given no other symptoms.

We discussed indications for coming to the hospital – and I got reassured that while high BP is bad, it takes days before it can do any major damage unless it stays very high continuously, and mine wasn’t in that region.

We discussed all the factors that made me go in – and basically concluded it was a perfect storm. He told me I was right to have come in.

I got bold – that advocacy I’m talking about – and handed him a copy of the paper on my family of stents which concludes that a month or two is as good as 12-18 months of antiplatelet drugs. He shrugged and said guidelines take a long time to catch up to research! I told him it seemed to bother my own doctor to be queried on these details – he thought my doctor must have had an off day.

I asked him if he knew my history – and he recited it back to me, correctly!

And he released me!

Subject to the rest of protocol, of course.

Which took until 4 PM.

An unexpected test – and refusing meds

When someone came in to do an echocardiogram, I asked who had ordered it and why it had been ordered, since the cardiologist had said I was free, not ‘free subject to X.’ The tech took her machine with her, and went to check it out as I did not recognize any of the names on the paperwork.

She never came back, and my nurse said it was some kind of mistake when she came to tell me she would be doing the paperwork. My nurse seemed annoyed about it, too.

I refused all the medicines the hospital had prepared for me: my own meds, but supplied by the hospital pharmacy, would be charged at huge rates. I stopped the whole procedure by telling the nurse I had already swallowed the morning ones (I had – forestalls arguments), and that the others I would take at home at the regular time with my dinner.

This also prevented the whole foofarah which would have arisen because my pain specialist has authorized brand name Celebrex because I tried four generics a year ago when they came out – and only one worked. Pharmacies that operate on bulk go by the lowest bidder, and cannot guarantee a manufacturer for generics.

I sympathize with hospitals trying to make their money in the current climate, but it is no reason to cooperate with unnecessary – and potentially damaging – things to me.

I’m fine – what did I learn?

I spent Thursday evening vegged out, Friday as a very slow recovery from all the assaults on everything (I joke I made my quota of people for the month in the first two hours in the ER – it is SO hard for me to cope with new people, new situations, noises, and bright lights). And Saturday I seem relatively okay, if slow.

I haven’t done any exercise yet. Possibly will do a shortened version of the cardiac rehab tomorrow or Monday, and ease back in.

And I have some new benchmarks. I know more kinds of chest pain that are just muscular. One doctor told me that if I could find the exact place where the muscle hurt, it was probably muscular, whereas if it seemed behind rather than in the muscle, to worry. A bit vague, but helpful. I know it’s only sustained high BP which puts me at risk for stroke. I was told only to take my BP in the mornings if asymptomatic. Duh.

I made the right call. After all the prior stuff – and the addition of all the above into SOMETHING, I didn’t have the right to put my husband through the stress. I even sent him home from the ER when they told me I’d be staying.

I managed to pack most of what I would need, quickly, in a small bag. Ate something with protein (I hadn’t been hungry all day), grabbed some Atkins low carb bars. (One ended up being dinner.)

Next time I will take salt and potassium in my own baggies, because food services and nurses simply do not believe me when I tell them I need to take a lot of both to keep my blood volume up, and by the time I see a doctor, it isn’t high on my priority list, and it is actually dangerous for me NOT to have them. The food they offered me was disgusting; I choked it down for the protein.

It took several days of my life away from me, put me through another bunch of stuff, and has left me behinder.

I hope there isn’t a ‘next time.’

Don’t take stupid chances.

Have you had similar ‘learning experiences?’

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Thanks to Stencil for the image and ability to add words.

‘Revenue-enhancing’ has become a dirty word

DO YOU KNOW WHAT YOU SIGNED AND WHAT IT OBLIGATES YOU TO?

Even if you have insurance!

It didn’t used to be like this, and I’m sure they have plenty of good reasons, probably having to do with nitpicking by insurance companies, but I’m getting really tired of getting lied to, and having to be on my guard all the time for every little thing when I go to the office of some medical professionals.

I don’t want to name names, as I suspect it’s widespread, but I’m finding that I can’t get out of a medical/dental office without little enhancements  to the experience being offered as if they were included, or as ‘covered by insurance, so don’t worry about the cost,’ and when I check turn out to be covered – yes, but at 50%. Or with a ‘credit toward’ some expense which is entirely optional.

Or in the case of one practitioner, when he informed us that our insurance allowed us the reduced cost which had been negotiated by the insurance company – they didn’t actually pay him anything! I felt cheapened by the experience (which was expensive), and wondered whether I was supposed to be offering him his full price!

The lists of what isn’t covered can depend on whether someone entirely separate from you has called this (whatever it is) by one name or a different name, such as people being warned lately that a hospital admission (going in and staying over night) is not necessarily a ‘hospital admission,’ covered by insurance!

It wouldn’t be my problem, except that these little untruths are destined to cost ME big money, if not just time and effort. And hours on the phone to attempt to straighten out with person after person on the phone in ‘billing.’

Is it necessary – and if so, why isn’t it covered?

I depend on my insurance company to, in some sense, control the costs of medical procedures, which, having written this, may be the problem.

But I can’t change the contract negotiated between whoever is paying for the medical insurance and whoever is paying the providers of medical services by one iota.

I don’t expect to hear, from an insurance company, “doctors recommend this as completely necessary, but we won’t pay for it.”

Also, I don’t actually hear from a provider, “this is absolutely recommended, but insurance won’t pay for it.”

Instead, I will turn up at an appointment for a covered service, and find I have to see the billing person first, because I have a HUGE ‘copay.’ At which point my choices are to leave, or to pay for a bill I wasn’t expecting. For a service the doctor says is entirely optional – but necessary.

The result? Constant vigilance is required.

And I can’t go to one of these visits and deal with something that pops up on the spot (there is a small additional charge for X because insurance doesn’t cover it) – done in such a way that you are a cheapskate if you don’t get the extra candy-flavored teeth protection for your growing offspring.

Or you have to respond to the eye doctor’s in-house glasses representative that yes, you know the frames available at Retailer-X are cheap – and that you don’t care.

You can’t get home, as I did today, and find out that the service you received as ‘it’s time for your X-rays’ is only covered by your insurer every 60 months. And you didn’t ask, because you assumed that was their job.

Am I exaggerating?

I think not. This has happened in at least five different places and kinds of medical services in the past six months.

And even the blood tests are done by a place which hands you a form that says ‘Medicare may not pay for these services’ and requires that you sign that YOU will pay for them if Medicare rejects something – the doctor ordered!

Every time you decide you’re not going to take the risk, you end up spending gobs MORE time there, and may have to fast all night again if your doctor’s office doesn’t happen to be open that early on the day you went in.

Because, ultimately, the buck stops with you, and this stuff is unbelievably expensive (when billed at full rates), and they will send bill collectors after you.

So it’s important, you have little control, you can prepare for one thing and be bowled over by something else completely without realizing it, and every single thing will cause you stress, time, and energy.

I wonder how the older folk cope?

Has this bitten you?

 

When there’s been a hole in your writing

HOW DO YOU KNOW IF YOU STILL WRITE LIKE YOURSELF?

The Holy Grail for authors is to be recognized from their writing, because it’s distinctive and personal and memorable. It’s called voice, and goes along with having a style, sometimes for series, sometimes for all your books.

It is an interesting milestone when you find you have developed such features.

And the question I’ve been asking myself since all the garbage happened (starting way back in November of last year) is: Am I still myself as a writer?

Life events change people

And writers are people.

On some of the days I’ve been able to write since the side effects of medications have mostly been out of my system, I have noted with some pleasure that I seem to have learned how to do writing the way I do it – faster.

The process hasn’t changed – I gather a lot of bits my plotting process has decided will be in a particular scene, fill in some lists I have made for myself with such things as ‘What is the heart of this scene?’ and ‘What would happen if this scene weren’t here?’ and such, and start organizing the material into beats which make some kind of sense to me – and then the actual writing seems to flow, dreamlike, from all the little pieces, as they show me where they belong.

Maybe it’s faster because I’ve stopped second-guessing myself: most of the material will fit in, and occasional bits will be postponed, and very rarely a piece will be added to an earlier finished scene.

But I question such gifts.

Is it real?

And is it still me?

I don’t want a reader to notice that something ineffable has changed, and Book 2 feels wrong.

I won’t know the answer to this for a while, but I made a plea to my beta reader to be especially aware of the concept of change as she reads the new material (my method is to send it to her, polished, a chapter at a time).

I’m not sure what the heck I will do it I’ve been changed in my writing by the recent health events. I will accept that maybe the speed has come because I value my tiny bit of functionality even more, now that I’ve experienced how it can disappear completely for months on end.

But first I have to know.

I await her judgment. If she’s not sure, I will get more readers from those who loved PURGATORY, and beg them to look at a couple of chapters.

It’s a scary thought – and one of the things that’s been worrying me along with the obvious aftermath to health problems.

If you notice

anything specific in my NON-fiction – comments and posts and emails – that makes you wonder whether I’m still here, please let me know.

I have literally run to the end of my DIY ways: I can’t tell. And I don’t know why I’m slightly uneasy, unless it’s simply the kind of unease that makes you question EVERYTHING once you trip over something that shouldn’t have been there.

Oh, and: has this ever happened to you?

 

 

Writing poised under the Sword of Damocles

UNSTABLE ROCKS WILL CRUSH YOU

There are too many things going on in my life, and all of them critical.

But the thing that is making it hard to write right now is one I hadn’t expected: I can’t remember quite how I felt BS (BEFORE STENTS), when I ONLY had CFS.

And by ‘feel’ in this instance I mean sensations in the BODY.

What sensations am I having that are worrisome?

I’m writing about these because they are both common and keep happening.

I’m doing far more exercise (even in my pitiful little amounts) that I was doing before. Part of it has involved a rowing motion with my arms against a resistance, which uses the chest muscles (pectorals) in an unaccustomed way.

So it isn’t really surprising that these muscles have a spot or two where there is sensation. By which I DON’T necessarily mean pain. Just a tightness that is in the muscle, in places which vary but are repeatable. Over and above the left breast. Outer, center, inner – is what I call them. Once of them seems to be relieved by burping. There are one or two similar spots on the right side – but the right side is dominant, and the muscles may be more used to being used. So, less noticeable?

Are those spots connected to the stents? Or are they simply the same spots on the same muscles – because that doesn’t change. Are they INSIDE the ribcage? Or outside, in the overlying muscles. It’s hard to tell.

There is a slight shortness of breath – when I climb a bunch of steps in a row. Or walk a longer distance than usual unsupported, such as when I walk from the house to the car. Or walk across the lawn to the mailbox and back. The heart rate can go up noticeably – until I sit down and let myself relax. I should expect SOMETHING when I do that – when is it too much?

There are muscles in my upper arms which get a bit weird – sometimes one will make it impossible to sleep because it waits about 6 seconds, and gives me an electric shock – for very long times, until I get up and do some range of motion exercises and some stretches and maybe eat something, and sometimes take ibuprofen (I’m trying to minimize NSAIDs, so I resist).

The question: are these significant?

All of these things could be symptoms. Of clogging arteries. Of something about to happen again. Of something not quite right.

But the thing is that they are not up to the level of being ‘reportable’ – or, heaven forbid, calling the doctor about on a weekend, or going to the ER.

I feel I’m on permanent ‘symptom watch.’ I’m waiting for the symptoms to get worse before doing something, in the same way I should have done something when the shortness of breath happened BS.

They used to drive me crazy in the hospital asking me to rate my pain. For someone who lives with a fair level of constant other pain, it is difficult to choose the higher numbers on the scale, and I’m aware of both minimizing and exaggerating as possibilities.

So, not being able to say ‘this is significant,’ and instead being in ‘wait and watch’ mode continuously is stressful. And stress is bad.

It would help if I could remember which of these were life BS

Standing has been a problem for years, and causes pain. So is my exercise making that worse? Or is something more nefarious going on?

If I walked with the walker BS, I often had pain the next day – I’m supporting part of my body weight with those chest muscles and arms on the walker.

I did as much exercise as I could do prudently before – including a lot of isometrics, which involve clenching a muscle and holding it. I know there were times when I did more than usual, and really noticed it.

And I used to ride the bike, too. The next day I usually felt it.

But I had no reason before to make an accurate record of pains and locations – my modus operandi has always been to ignore most of this stuff as much as possible so as not to waste energy on what I couldn’t change anyway.

PTS anyone? Post-traumatic stress?

It’s one of the major symptoms, being hyperalert, and wondering and worrying about things which may or may not be triggers.

Always being on alert is more than exhausting.

Wondering exactly where on the continuum you’re supposed to do something wears you down. That and wondering if it’s new/real/important. Or ignorable.

So I’m sharing with my blog, and hoping that noticing and documenting feeling physical and mental is enough to disarm them – and that the PTS is slowly going away as I do so.

I really don’t want to have to find someone and take the energy to explain all this stuff to.

Thanks for listening, if you got this far. Share if it resonates.

Patience is a virtue I don’t possess

WHAT AM I SUPPOSED TO DO WITH MY TIME?

I apologize to God every day for the time I’ve been given and have wasted.

I’m not a big believer in just letting time float by, which makes this akin to the sin of laziness.

I don’t mind hard work – never have – and always intended to work hard my whole life, to use my time wisely, and to help others: family, friends, community, nation.

I always felt, when I was young, that I could work my way out of any dead end, find a way to proceed from where I was to where I wanted to go.

I trusted that there was a purpose for me, and I tried to discern that purpose. Since I seemed to be able to handle math and science better than my peers, I determined I would be a physicist. After that, the PhD seemed a useful next step – I would do research. There was a paucity of women in hard science, so that must be my goal in life, what I was meant to do, and I enjoyed it a lot of the time, too.

It turned out I liked programming computers, and I preferred doing so with a worthwhile use for all that power: scientific computing in between the experimentalists and the theorists in my chosen field fit perfectly as a home.

Even when I got sick, I found ways to make myself useful, and that gave shape to what was left of my life: kids, husband, home – the energy went there. Instead of spending time and energy getting kids to school at the same time with a lunch, we homeschooled, and the science was poured into projects and fairs, competitions and internships.

As the kids needed me less, I taught myself to write fiction, poured into writing what I could spare.

Healing? Feels like a complete waste of time.

In a week it will be three months since they finally figured out what was wrong and installed the magic third stent in the right place. It’s been longer since the beginning of the whole thing, much longer if you add the three months of coughing that started last Nov. 1.

I am trying hard to be grateful for being alive: while there’s life, there’s hope.

But this status right now, waiting to see if I will even get back to that very basic writing level I had over half a year ago, having days go by without producing anything, week after week after week, feels not like healing, but like waste.

I can force myself to do a few things when they’re critical – but the ones I need to do with a bit of a brain are on the list of things piling up by the day.

And I can’t force myself to write fiction. It is a higher ability which can be encouraged but not ordered, and it had disappeared completely as of over a month ago, with the zombie brain that came from the last, unnecessary, drug: clopidogrel – generic Plavix. I stopped taking it two weeks ago, and it took ten days before I could say it was letting go of its grip.

I’m not back yet. All my schedules and timings are off. It takes me far longer to have the brain click on – and it stays on for a very short time, and then clicks back off.

So I wait, and another day goes by with nothing to show.

Exercise? A joke.

My online CFS friends tell me it can be four months before I will even see the beginning effects of my tiny bit of exercise. The exercise? Eight minutes, three times a week, of deliberately sub-aerobic recumbent rowing motion for arms or legs, in four 2-min. bursts, separated by 4-min. rests. Even I can’t see how that will add up to anything in four months, since I can’t increase it, as I barely tolerate it now. It will be two months in a week.

Without the clopidogrel, there is no huge pain surge after the exercise. But there is also only the slightest hint that I will be able to increase the intensity. I’m grateful for the eight minutes – but it is pitiful.

I do my exercise – missed one day because I got too much walking to be functional later – because it is the one thing I’m doing which the doctor told me to do. I was trying to exercise before I found out one of my arteries (I don’t believe the other stents were necessary) was almost blocked, and it hadn’t been going well, for what now looks like obvious reasons. So I will keep that one up, hope for improvement, and be prepared for it to take a long time.

I haven’t tried a bike ride yet – I could do that before, but I have a residual ‘vertical instability’ feeling from the drugs, and I’m not sure I’m safe yet.

Which still leaves me with 17 hours a day to ‘use’

And during which I’m still tireder than I was before, which makes no sense to me since supposedly I have better blood flow!

I have been bored out of my gourd. I can’t read – that uses energy I haven’t had. I can only watch a bit of TV in the evening – two shows, and I’m tired. From watching the friggin TV! I can’t do useful things – no energy. Though I’ve managed a couple of weeding sessions, sitting on the ground for a couple of hours getting those pesky strawberries and onions out – losing the complete next day because I did too much SITTING. Honestly – it’s appalling.

So what HAVE I been doing?

Writing. The journals for every day since I got out of the hospital now include 62,000 words; and the auxiliary material – drugs, stents, papers – another 36,000. About 5% of that is time stamps; the rest is a good size novel. Boring and repetitious, but it has allowed me to see patterns, which identified the side effects – and the consequences of drug changes. I haven’t had the energy to report the side effects to the FDA – a huge item on my to do list.

Reading. I forced myself to read that bunch of scientific papers (okay, SKIM, not read, looking for the necessary parts – because things were getting worse by the day in the side effects department, and I needed to get off drugs). Unbelievably exhausting – but I found what I needed – thank you, Dr. Google and online medical papers.

Blogging. I think I’ve put out around ten posts of about 1500 words each, turning some of that journaling into semi-coherent pieces of description of one or another topic in those journals.

Surfing. THERE IS NOTHING TO READ ON THE INTERNET. I don’t know where most of the content went, but it seems WAY down from when I started educating myself on self-publishing back in 2012. Several prominent bloggers then have either stopped posting, or have cut way back.

Games. No, don’t get excited – I haven’t had the brainpower for real games. Sudoku and Drench, a simple flash game, things I can play rather mindlessly (even the hard Sudokus which I use to gauge mental speed); very occasionally Bee Cells on my Color Nook – the only thing I sometimes charge it up to take somewhere (I can’t leave it charged – no ability to stop playing).

Sleeping. Night runs 6-7 interrupted hours; and I’m still aiming for 3-5 half-hour naps during which my brain dumps the junk (I call it ‘mental dialysis’ – used to work much better). I meditate during the naps, keep the heart rate and blood pressure down, calm myself, get through.

Sitting. Here, at the computer, waiting each day for my brain to come back. Getting an hour once a week up until quite recently. Now I’m up to an hour every second or third day. Note that it takes me 5-6 hours to GET that hour, and involves rituals having to do with Diet Coke, food, naps, and what I’m allowed to do while there is any possibility the brain might visit that day (mostly that surfing, and the leaving of comments if there’s ANYTHING I can contribute to a discussion).

Can’t: listen to music – it hurts my ears. Do anything artistic, even coloring in a coloring book, because it seems both boring and pointless. Embroider. Sew. Clean. Work on getting this house ready for market when my assistant is here a few hours a week. Talk to people – phone, video, or in person are exhausting. Leave the house – I think I’m up to once or twice a week, and pay for it, and most of them have been visits to the you-know-whos.

There IS no solution that comes from without

I don’t need pity. Suggestions are pretty useless in the present conditions, though they have been lovely from people showing concern.

All I can do is HOPE that this extremely slow process – doing what I can, exercising my 8 min. three times a week, continuing to eat carefully so it doesn’t set off the new gut instabilities and I lose a bit of weight (good for heart and joints), praying, not giving up – will result in something positive.

I got that hour of ‘brain on’ today – and finished a scene I started six weeks ago. It isn’t me, it isn’t writer’s block – the instant the brain is on, I head for the WIP (work in progress) and get started. It isn’t depression keeping me from writing (though I’m rather depressed about the situation, it’s just that, situational). And it isn’t even dealing with the post-traumatic stress – I’ve done that, I’m doing that, and without the drugs in my system some of the more hallucinatory effects have disappeared (which proves they’ve never been me in the first place).

I can’t even eat chocolate! I tried a couple of times, made two tablespoonfuls of chocolate chips last an hour – and then was hit with a rapid heart rate and elevated temperature period afterward, each time, that has made me very skittish.

I feel like Job in the Old Testament – hopeful, yet subject to boils and all other disasters. My trust in the Almightly hasn’t wavered (much), but I sure wish I could ask Him a lot of questions.

As I said, PATIENCE is a virtue I don’t have.

I’m being forced to pretend. Got it. I don’t need to disturb my poor friends and family any more than I’ve already done.

If I’ve missed something obvious, please feel free. Pray. I don’t see what else to do.

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Thank you for letting me vent. I will be happy to listen to YOU vent.

And yes, I’m still grateful to be alive, however pointless it seems right now. It CAN get a LOT worse. But then boredom wouldn’t really be the problem any more – survival would.

Progress of a sort is better than none

This is a stub to my Pride’s Children site.

I felt the progress report on Pride’s Children: NETHERWORLD is more appropriate on the books’ site.

I continue to appreciate the support and cheering words in response to my last series of posts about me, which, though necessary, have been navel-gazing as I plowed through the events of the past few months.

I may be whistling in the dark, but what else can we do? I am a religious person with free will. If I can, I will finish the planned trilogy of Pride’s Children.