Tag Archives: fears

I write today in Uttar Pradesh


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


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?

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!

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


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.


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:


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.


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


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.


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


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?’

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

‘Revenue-enhancing’ has become a dirty word


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

Lighthouse at night at end of pier. Text: What can change a writer's voice and style? Alicia Butcher Ehrhardt


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

Pile of rocks on mountain. Text: What is ready to fall on your head? Alicia Butcher Ehrhardt


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

Water drops. Text: How to survive Boredom. Not very well. Alicia Butcher EhrhardtWHAT 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.

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

Baby plant. Text: We have survived the winter. The goal has not changed. Alicia Butcher EhrhardtThis 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.

Dealing with stress after medical trauma

Painting and drawing tools. Text: Have the tools? Now do the WORK. Alicia Butcher Ehrhardt


Damage comes in many forms in the aftermath of a medically traumatic event to self or loved one.

Humans are fragile.

The point of no return is frighteningly close.

Way too many people I know have lost a parent permanently over a stupidity: the hospital ER staff didn’t consider Mom was dehydrated – until her kidneys were permanently damaged.

Inappropriate drugs in the hospital pushed Dad over the edge.

Cousin Larry went in for routine optional back surgery – at 70 – and didn’t come out. I am a couple of years younger only, and facing possible ‘routine optional back surgery’ to be able to walk properly.

The hospital gave a friend access to infections somehow, and he almost died after a routine biopsy.

I could EASILY not have made it: the 95% blockage causing the chest pain was missed TWICE by the ‘gold standard’ cardiac catheterization, and I was actually sent home as ‘fine’ the first time, to spend six days dealing with chest pain I had been assured was NON-CARDIAC.

Life is short and hard, and we all die at the end, but sudden death – and near misses – wreak havoc with one’s sense of self.

And most of the above happened to people I know in very recent memory, so you can say I’ve been more than usually primed/skittish/on edge. I was chronically ill, but okay because I could write, albeit slowly.

Fear must be conquered over and over again

I’m going to keep this short (ha!), and just put right here this afternoon’s fear thoughts. Maybe they – or the process of getting them out – will resonate with someone:

FROM THE FEAR JOURNALS: May 4, 2017 at 1:40 PM

PTS takes what it takes – I had to spend some time on it because I’m not just snapping back as hoped for.

Am I really that afraid to try to write, given the lame effort I produced on drugs?

I am.

I am afraid of having lost it somehow during this bad half-year, or just the bad three months past.

Fear. Common ordinary fear.


I don’t have enough of a following for them to read my writing if it isn’t great.


I wouldn’t WANT them to read my writing if it isn’t great.


What has taken a hit is my self-image as a great writer.


And the sad part is that I would never do that to someone else. Ouch.

Ego/fear. Takes something like this to shake you up again, because that self-confidence is a trifle fragile.

Or because talent is. Even with hard work, great writers lose it. The Peter Blatty example – Dimiter, which I found unreadable – is always before me (though I should reread The Exorcist – maybe I was less discriminating when I found it so gripping. Ouch.).

Common ordinary fear.

Which is fixed by work. If you’re lucky.

And now I can try to do the work again, and I am immensely grateful.

Even though I haven’t succeeded yet, and am getting frantic.

AFTER-EFFECT: It is taking me a lot longer to get the brain to the functional stage the way I used to, and some days there is no click, and THAT is the after-effect: time delay.

THAT is the drugs and getting them out of my body and the damage there still is.

Additional slowness – to a system that was marginal at best.

I refuse to consider that it may take a year to get ‘me’ back.

But it may take a few more days for everything to come back, for the damage to be repaired.

And I’m still afraid that the residual effects might be permanent: lots more prep – and much less functional time.

And I’m FAR tireder than I think I SHOULD be.

Silly me: where do I think all this effort came from?

Even good stress – defending my choice – is exhausting. None of it is cost free to people like me.

There’s never been any slack, which is why I excoriate myself when I think I’ve wasted time, like today, by not just gritting my teeth and getting back to work. Made it worse When I know I can’t write with that low an energy level.

And [my assistant] is coming, and the other front patch needs weeding, and…

Things are what they are

And none of us expect sympathy or pity for whatever life throws at us and we are forced to handle.

I don’t.

This is part of dealing with the Post-medical-trauma-stress: realizing that it didn’t just add its own bits, but it REACTIVATED all the fears about myself and my writing that I had dealt with/shoved under a rock.

Because that’s what stress does.

It is so hard to let more days go by without getting anything any writing of fiction done.

At least I did my exercises in the morning, and I got out in the afternoon. Both may contribute to eventual improvement.

I’m still working on it. [I’d rest even more if I thought it would help.] Obstinate type.

Comments always welcome – thanks for all the support as I put myself back together.

PTSD from medical trauma is REAL

Silhouette of woman holding umbrella; Test: Patients need to be monitored for stress. Alicia Butcher Ehrhardt


And I shouldn’t have had to diagnose it myself.

I still find it unbelievable that, in all that has happened to me since the chest pains Feb. 4, 2017, not one medical person has 1) asked me how I was doing mentally, or 2) warned me that I was at risk for PTSD.

I even, at one point recently, called the cardiologists’ office, and asked if they had anyone on staff who handled, you know, the psychological side of things. Nope.

I do want to state first and foremost that I am grateful to be alive. Grateful that medical personnel eventually managed to figure out what was wrong with me – a 95% blocked artery that was causing the chest pain, I assume, since the pain went away when they finally put that third stent in on the third catheterization in two weeks. It would be churlish not to be grateful for being alive.

I am also lucky to not have been visibly damaged – no heart surgery scar, for example.

It doesn’t help.

‘Trauma’ includes medical trauma

There are a lot of websites out there dedicated to what I’ll have to call ‘classical’ PTSD: the reaction some soldiers have to being in combat, the reaction some people will have to being raped or mugged. The classical form, if I may, includes things like flashbacks and nightmares, and has been popularized on TV as almost an alternate reality, where the person with PTSD almost has an excuse for overreacting to loud noises by re-enacting the original trauma.

But medical procedures can be intensely stressful, and medical procedures done on an emergency basis even more so.

A couple of quotes might help:

From Medical Disorders as a Cause of Psychological Trauma and Posttraumatic Stress Disorder:

Research has increasingly targeted serious or life-threatening illnesses as traumatic events, and a growing literature on PTSD among medical patients has developed (e.g. cancer, myocardial infarct, HIV diagnosis).


From When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma

Trauma experienced as a result of medical procedures,
illnesses, and hospital stays can have lasting effects. Those who experience
medical trauma can develop clinically significant reactions such as PTSD,
anxiety, depression, complicated grief, and somatic complaints.

Women are more than twice as likely to develop PTSD

The numbers in general are 10% of women and 4% of men will develop PTSD during their lifetime (fuzzy numbers – not sure of the PTSD definition used), which probably reflects that women have more stressors such as problems associated with pregnancy (Caesareans, miscarriages, and even ‘normal’ birth can be quite traumatic) and rape, as well as being socialized to ‘not make a fuss.’

From Facts About Women and Trauma:

Although the majority of individuals will be able to absorb the trauma over time, many survivors will experience long-lasting problems.

Approximately 8% of survivors will develop Posttraumatic Stress Disorder (PTSD).

Many survivors currently living with PTSD experience symptoms that are both chronic and severe. These include: nightmares, insomnia, somatic disturbances, difficulty with intimate relationships, fear, anxiety, anger, shame, aggression, suicidal behaviors, loss of trust, and isolation.

Psychological disorders may also occur in conjunction with posttraumatic stress including depression, anxiety, and alcohol/substance abuse problems.

Research indicates that women are twice as likely to develop Posttraumatic Stress Disorder (PTSD), experience a longer duration of posttraumatic symptoms, and display more sensitivity to stimuli that remind them of the trauma.

And cardiac events in women can be extra stressful

From the HeartSisters blog (where you can find a large number of articles by searching for PTSD):

By the latest account, one in eight heart attack survivors experiences a reaction called post-traumatic stress disorder (PTSD). Although PTSD is usually associated with extreme trauma such as war, rape or a natural disaster, heart attack survivors can experience the same key symptoms: flashbacks that occur as nightmares or intrusive thoughts. As a result, the survivor actively tries to avoid being reminded of the event and becomes hyper-vigilant worrying that it will happen again.

It’s a high price to pay for having your life spared.

In the three studies that reported clinical outcomes, heart attack survivors with PTSD had double the risk of dying or experiencing a second heart attack as those without PTSD. The work was published online in the journal, Public Library of Science One.

Identifying PTSD early is an important step to coping with it. The sooner treatment is started, the more likely it will be successful.

My own risk factors should have warned someone:

Since my energy runs so low from CFS, almost anything extra will overwhelm my already-limited coping skills. I cannot suddenly manufacture more energy to cope with a crisis.

For whatever reasons, I experienced a particularly clumsy set of medical procedures which took over two weeks, three cardiac catheterizations and a nuclear stress test, and nine days in two different admissions to two hospitals each time, before they found and stented the right arterial blockage. Instead of going in for chest pains, having the catheterization, and waking up with the proper place stented – which should have happened on the first two days, the procedure was prolonged beyond anything reasonable. I still have no satisfactory explanation for this.

And, because of the same CFS, and which I warned them about, I have had a constant and continuous string of side effects from the medicines prescribed – and eventually withdrawn. I told them I always overreact to meds, and usually can’t tolerate them, but I was required to prove that by doing so. Did I get smaller doses than they would have given someone else? I don’t know. What I do know is that my body has rejected every drug so far with violent side effects, physical AND mental, and I am still experiencing some which may be related to the last drug they really want me to take (we’ll see about that).

‘Opinionated, over-educated female suddenly experiences total loss of control’ – that would have warned even me! Loss of control, by the way, makes any of the ‘consent’ forms I signed under those conditions meaningless. As well as the fiction that you actually get to choose any of what happens; I found that fiction – unwillingness of the doctors to say what I should do as if they stood behind their ‘recommendations’ – added incredibly to the stress.

Introvert suddenly having to deal with literally hundreds of new people – duh!

And the unfortunate major side effect that the meds kept me from using my main coping mechanism for stress: 3-5 half-hour naps/rests daily during which I spend most of the time doing yoga-type breathing which slows my heart rate and removes stress and allows me to process away the mental debris. Add the meds causing an increased heart rate for a nice recipe for PTSD simply from sleep deprivation.

Oh, and the pain. I cope with a large amount of pain normally on a daily basis; the increase – and them not wanting me to take additional pain medications I normally use – made excessive pain a constant companion, to the point that it was difficult to separate the pain into parts I could cope with – and all the rest. At one point I realized that I was putting up with a whole host of side effects making me a non-functional zombie, simply because those side effects didn’t hurt!

None of this is prescriptive: how do I know I have PTSD?

Here we go back to some of the symptoms and assessments, of which there are many on the web, with the caution that many if not most are for the more classical form.

From Screening for PTSD:

  • I am troubled by having experienced a life-threatening event that caused intense fear and helplessness.
  • I reexperience the events by repeated, distressing memories; and I have intense physical and emotional distress when I am exposed to things that remind me of the event.
  • Reminders of the events affect me by avoiding activities and places or people who remind me of it; blanking on important parts of it; losing interest in significant activities of my life; sensing that my future has shrunk; and feeling my range of emotions is restricted.
  • And I am troubled by problems sleeping; irritability and outbursts of anger; problems concentrating; feeling ‘on guard’; and have an exaggerated startle response.

What will I do about dealing with PTSD in myself?

There are a number of ways of dealing with PTSD which have been developed for the classic forms (and which can be, I read, amazingly effective for those who will seek help). They include talk therapy, some interesting procedures, and medications.

I am brought right smack up against my limitations again: I wouldn’t try a drug for this if you paid me, not after all the problems I’ve had with drugs recently; leaving the house another time a week to talk to someone – for a therapy which would probably take many weeks – isn’t a real possibility unless nothing else works; and I’m not new age enough to try things like the eye movement thing.

I will do as much as I can to handle this myself, now that I have a name for what is going on.

From HeartSisters again:

* UPDATE, August 13, 2013:  U.S. Staff Sargent and military Medal of Honor recipient Ty Carter has launched a campaign to remove the D from PTSD: “Post Traumatic Stress Disorder is really a formal diagnosis for natural stress that one experiences after a traumatic event. The formal title of PTSD sometimes gives a false impression that the ‘disorder’ is something associated with a disease or a chemical imbalance, when in reality it is simply a biological response.

Three steps are necessary to successfully treat the condition:
•    acknowledging one has symptoms
•    communicating with others about it
•    seeking treatment without fear of judgment

This post is the review of the first step – acknowledging my symptoms and what they mean.

The second step (yes, I told my husband, and I will tell the doctor this Thursday when I see her, trying very hard to not be judgmental) – I am communicating with anyone who reads this. And I’m hoping it will prevent distress in someone else when they realize how easily PTSD can happen, and how common it is. And that it isn’t just the classical war and rape form.

And I will, if I cannot handle it myself, seek professional help. Because those activities I used to enjoy, and my ability to write, are what was making life bearable for someone with a chronic illness and zero energy, and I’m not going to give them up without the fight of my life. For my life.

I don’t feel sorry for myself, and I’m trying hard not to feel too angry.

As always, comments are welcome. It isn’t really communicating unless it’s a two-way street.

Fragility and vulnerability after the stent

Woman looking up at tall grey wall; Text: I sed to be me. Alicia Butcher Ehrhardt


The more things that happen to you, one after another, which you have no control over, the more stressed out you’re going to be.

Some people, with an invincible attitude, do well under stress – they aren’t going to let it bother them.

Others learn with yoga and breathing techniques, to manage the unmanageable somewhat, and have something they can do when they feel stressed – which makes the stress bearable.

I’m running scared.

I’m not going to claim PTSD – the disorder part in particular – but I can see a bit of how people get to that point.

And when the solutions don’t work, when the medications given to alleviate the ‘problems’ don’t work, and instead have side effects as bad as, or worse than, the problems themselves, one starts to feel fragile and vulnerable – and scared.

I can no longer count on myself

I drove myself to church Sunday, finally getting back to my little choir at the Princeton U. chapel I love singing with, and things were going about as normal as you could expect. I left home having both eaten something and had a nap, and was even on the road a bit early, a good start. The substitute choir leader was kind and gentle and treated us as professionals. I brought a few people quickly up to date as to why I hadn’t been there since Feb. 4, and the singing went well.

Even climbing the steps from the crypt – which had become a problem I didn’t realize is called ‘shortness of breath,’ and which I mistakenly assigned to CFS or to simply getting older – was more doable than it had been – I took it slow from caution, not necessity.

Afterward, I chatted a few minutes, hit the bathroom (halfway down to the crypt), and set out for home after peeling an Atkins bar so I wouldn’t be empty, and starting to munch it in the car.

Getting home was the problem

Mind you, I’ve been driving myself just fine for at LEAST four years, maybe longer. I drove myself home the night of Feb. 4, when I ended up in the hospital the first time for chest pain the next morning. This is something I do: I am – I was – an independent adult.

I was about halfway home, when I had an episode of feeling extremely sleepy, and then having the sensation of being scared, and a rapid heart rate, not a good situation when you’re driving.

I got into the right-hand lane, which helped some, and pulled off into a mall parking lot soon after that. I wanted to call home – but my cell had no service. I walked around a bit, photographed (maybe – don’t really know how to use the camera on the phone) some WILD TURKEYS – or escapees from the turkey farm.

Back on the road (it’s a total drive of 20-25 minutes, no biggie), the feelings persisted, and I pulled into a strip mall further down the road – to find that every store was closed (Sunday after 6PM), and there were no other people, and the cell STILL had no service. I couldn’t call home to tell my husband I would take a nap in the car and would be a while.

After a bit, a pickup truck pulled in. I asked the other driver if I could use his phone – and he said it was not charge. He asked if there was anything I needed. I told him I’d be fine – and headed for home again.

It was a very uncomfortable drive the rest of the way, because there are no places such as stores to stop at, and I didn’t think I was so far gone as to need emergency services, but I can tell you I took it really slow, stayed in the right lane, made the easiest choices for streets, and was prepared to pull over at any moment.

I considered stopping at a house, preferably one with a lot of cars, and I’m sure one of my neighbors would have listened – but I was closer and closer to home, and just didn’t want the fuss that would have to ensue.

I made it, obviously, but I really needed that outing to be one which took me back to the tiny bit of normal I have, and it ALMOST did, but didn’t.

Side effects, stress, post-trauma reactions, anxiety?

I don’t know whether to blame some of these things – which came out of the blue without warning – on the same drugs I’m taking which have confusion, dizziness, lightheadedness, palpitations, and other such listed as side effects.

That night, and every night since, I take those drugs again – and it’s become a Scylla and Charybdis: there is no certainty close to either side.

I don’t dare stop the calcium channel blocker (amlodipine) which I was told to take after the previous Sunday resulted in an ER visit in the middle of the night because of really high blood pressures, but I don’t know if that drug is CAUSING the problems with its side effects. This week has been getting off one drug (Effient) that sent me to the hospital that last Sunday, and getting on two others (clopidogrel – Plavix-clone plus the amlodipine which barely brought the high BP down from the Effient).

Side effects are common when getting on new drugs.

Side effects take a while to fade when you stop taking a drug.

Meanwhile, my system feels like a funhouse.

The whole week has been fraught – high blood pressure spikes (not high enough for the ER, but much higher than I’m used to) – with a host of minor symptoms – enough of a daily variation that it seriously worried me, but knowing that they would tell me to just keep taking the drugs).

I want somebody to KNOW, to fix things, to tell me it’s okay. I want to be able to get through a weekend without monitoring every time I feel shaky or the heart is racing. I’ll see the doctor – April 20th. That seems awfully far away.

It’s not any individual thing; it’s the accumulation, the unpredictability, and the fact that I have demonstrated paradoxical responses to everything they’ve given me so far.

I want to be stable. I don’t want to take ANY drugs that are not strictly necessary – I worry that they will accumulate like the Effient and cause problems simply because I’m not clearing them out properly.

And I worry about the stents, stent blockage, and the bleeding risks of taking drugs which keep you from clotting.

I do not believe in taking one drug to counteract the side effects of another. The principle is wrong. And I don’t react well to it anyway – plus it leaves me in a position of not knowing which to stop.

I guess I can say I’ve had every side effect in the book; well, about 50% of them – so far.

I am not happy.

And I’m scared.

And I keep remembering that I did NOT have a blood pressure problem even when one of my arteries was getting quite blocked! So I don’t understand why I have one now – it must be their drugs.

It’s getting worse by the day.

In a week, nothing has changed – except that I can’t write. No brain kicking on, not for even an hour to write with.

And I’m not myself.

And I can’t function this way.

I didn’t have much, but now it’s gone.

I have a sing tonight.

I will have to drive myself home around 11PM. My husband (who isn’t even awake at that time) has offered to drop me off and pick me up – the very last thing I want.

I’m already a significant burden, since there are so few things I can do for us.

I don’t know if I’m going.

If I have another reaction like last Sunday, this time at night…


Heart Sisters is an amazing blog

A hand writing. Text: Bookmark Hear Sister for when you need it. A blog for women on heart attacks, etc.SOMETIMES YOU JUST HAVE TO PASS ON INFORMATION

I have been reading post after post on Carolyn Thomas’s blog, Heart Sisters, and I want to pass on the information that it is FULL of stories about how heart attacks and other cardiac events are different in women – and how bad we are at paying attention to some of the symptoms, and getting ourselves safely (don’t drive yourself, don’t let someone drive you – call 911) to the ER.

All about women and heart disease from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women’s health advocate, heart attack survivor, blogger, speaker on the west coast of Canada

My suggestion? Go visit – and read a few posts.

Then BOOKMARK the blog for the future, for when you may need the information from a woman’s perspective that will make you do the right thing.

The link above goes to the archives. I wish I’d had this information before today – everything I’ve been reading and writing was in reaction to the distinctly male style of research papers.

Medicine could really use an overhaul of how it presents information to women; meanwhile, we have Carolyn.

Depression: unavoidable consequence of life-altering surgery?

Bird flying into the sunset. Text: How far away are the Grey Havens. Alicia Butcher Ehrhardt


I don’t want to have to write this post, but I’m coming to the conclusion that this is the final ‘tail’ I have to deal with.

I don’t want to believe that it may be a consequences of having my life saved that, for a year, the last drug I’m on may dog my steps, make me wish I hadn’t made it, drive me to a different place where it isn’t worth getting up in the morning.

Maybe I’m writing this prematurely, but even if the whole experience disappeared tomorrow into a (tiny) burst of continuing ability to write, it HAS existed. It is REAL. And I’m probably not alone in having it.

Why would a platelet control drug (Effient) cause problems?

Because one of its side effects is ‘low energy.’

I thought getting the drugs with the major side effects out of my system would take me back to where I used to exist, in my low-energy CFS state that allowed a couple of hours a day for writing fiction – my ‘good time’ – if I did everything right: got enough sleep, took my naps, didn’t eat until after writing (to avoid diverting blood to digestion I needed for thinking), didn’t eat carbs, didn’t leave the house much, kept the adrenaline low by suppressing most of the effect of emotions…

What this actually means is that I need to achieve an energy level somewhat above bare-existence levels for part of the day, and don’t have much of a margin of safety. Many days, especially if something else HAD to be done, by ME, I had to use it for something other than writing fiction. But most of the time – maybe 5 or 6 out of 7 days – I could count on that piece of my old mind hanging around for a bit.

And now I’m down to 1 or 2 out of 7 – and it’s simply not enough to keep me from getting depressed – and then having to use some of those days and some of that energy to drag myself out of the pit of despair.

How do you handle depression?

A long time ago, when I first got CFS, there was some evidence that taking small quantities – about 10% of a regular dose – of antidepressants, and my doctor at the time tried four or five of them over a period when I was desperate to get some of myself back.

And the reaction to medication that still is with me – overreacting to small amounts, and usually not being able to take enough to reach a therapeutic dose – happened back then. None of the drugs I tried had any positive effect; all had side effects which made me beg off them; and on none of them did I reach even that 10% dose before this happened.

It seems to be my version (I’m far from alone in this among people with CFS (PWCs)) of this d**ned disease.

But because of this experiment, I won’t try anti-depressant medications again.

Long ago I learned Cognitive Behavior Therapy – from Feeling Good: the new mood therapy, Dr. David Burns. It takes time, involves, for me, a fair amount of writing it all down and dealing with it on paper.

But it has the advantages of:

  • no drugs for my system to deal with
  • no side effects
  • available in the middle of the night – or any other time and place
  • completely under my control
  • always works for me (eventually)
  • doesn’t need a therapist, a doctor, or a pharmacist – or a prescription
  • no cost

I can’t tell you the number of times in almost three decades that I’ve realized I’m getting overwhelmed, started writing about it, figured out what the important threads were, and worked my way out of depression that was making my life uninhabitable.

I don’t push this on other people – many other people can handle a drug just fine, don’t get many side effects, and just need their brain chemistry adjusted; or, if in a major depression, need far more help than they can manage this way. But it’s what I’ve used all these years, and it works for me – if I put the time and effort in. Which I always end up doing because I can, I don’t like inflicting this self on my family, and depression ruins what life I have left – and bring my fiction to a standstill.

Back to the life-altering part

It is characteristic of many events in life that change you from one person into another – love, marriage, a child, getting kicked out of school, divorce, joining the military, losing a parent… – to make you reassess what is important to you, what you are doing with your life.

Having stents installed, and finding out you might have been heading for a heart attack otherwise, changes you. It is a curious ‘surgery’ because there is little in the way of cutting and healing from that (except in my unlucky case, where I blew a gasket in the hole in my femoral artery – I still have the damage from that).

But that almost doesn’t matter, because I KNOW I am now another person/body. For one, I am now a ‘cardiac patient,’ with the implications of doctor supervision, meds, visits to the cardiologist, tests, and whatever changes these things may force on me.

And of course there is the mortality thing – events remind you time is limited.

It helps to focus you.

But I had ONE thing left to me, writing fiction, and I am dealing with not being able to do that ONE thing.

The rest of life doesn’t conveniently take up the slack

In addition to writing book 2 in the Pride’s Children trilogy, I am trying to market book 1. This has slowed to a standstill – I am hand-selling a couple of copies a month at best. It takes me a lot of time and many emails to get someone to accept a free copy for a possible review – which I’m happy to do when I can, but is happening very rarely lately.

I’m running Amazon ads (thanks to Brian Meeks for getting me started where I couldn’t figure out the basics); so far, since Feb. 4, Amazon tells me I’ve spent $30 on ads, and have sold one copy (though I think they may be responsible for a few more, but possibly not directly from someone clicking on my ads, which is what they track). I can leave that running in the background, and hope for a groundswell in the future.

I am also trying to finish putting up a short story prequel, Too Late, so that those who don’t want to read it here on the free fiction tab – or who prefer their own copy managed by Amazon for their Kindle – can have it for 0.99. Or people who get to my Author Page can select a low-cost alternative to the outrageous-for-an-indie price of $8.99 for an ebook (compare to big publisher prices which are higher) to read to see if I can write. Or even so I can make it available for download to anyone joining my newsletter or following my blog.

And of course there is cardiac rehab – and its attendant paperwork. I don’t even want to tell you how much time I’ve wasted on that, and I haven’t even started yet. When it happens, in a few weeks, it will also sap my energy by making me leave the house two more times per week, and expend energy I don’t have. The hope is that it might also eventually help. Not in the conventional way: I can’t do aerobic exercise, so there is no ability to increase aerobic capacity; the best I can hope for is a tiny increase in ‘fitness’ over time that might offset the decline I’ve been in.

If nothing else, it will shut the cardiologist up that I’ve tried it.

I’m not blogging as much – have nothing interesting to say other than to relate my experiences with the medical system as I’m doing – another indication of low energy.

And I’ve started going for the heart-rate limited slow walks which I’ve been trying to get to for ages (and may have been made more difficult by that blockage) – the only way I know for a PWC to increase fitness on her own. That is, I got ONE walk in – to the middle of the next block and back – when it was 66 degrees the other day. We’re back in the 30s, so I can’t do that for a while again, but will try to find the energy in the hopes that there might be eventual improvement in something, anything.

I still have to finish things such as my mom and dad’s tax returns (he died in Aug. 2014, I got the paperwork to do the next year, and the IRS has stymied my every effort so far to get the right information by… well, you don’t need the horrible details; sufficient to say it’s not done yet).

We want to get this house on the market – and move so husband doesn’t have to deal with me by himself in the future. And because it is so much work just to maintain a home and yard, and I’m not capable of helping any more.

Moving will be its own can of worms – as will finding the right place.

So, more stuff on the to do list – and less to do it with

I’m not surprised to be depressed under these conditions, but I’m not managing to get control of it, because the one reliable thing I had that helped – writing fiction – isn’t coming back fast enough.

I should be happy to be alive. I am grateful, but not happy. All it does right now is remind me how I’ve lost another huge chunk of me, and I can’t figure out how to get that miserable chunk back.

I don’t think most people realize how tiny my life is already. I haven’t had the energy to go to church, or to sing at the Princeton chapel, or to go to the Folk Music Society sings and concerts – the few things that used to get me out of the house.

I have an assistant – so she has been getting some of the backlog things, and the recurring things, done – we need to move to the dejunking, final fixing, getting rid of, downsizing and losing even more things from your life to fit a smaller place. I barely manage to work with her by giving her instructions when she comes. I’m no help any more lately.

There is such a thing as too much loss.

I’m perilously close to that point.