Tag Archives: Life

The delicate sensibilities of a writer

THE PRINCESS AND THE PEA

I’m sitting at my computer feeling sorry for myself, and I get a sign from God: a hair is annoying me by touching my wrist.

I look down, don’t see it.

But I feel it, and I know it’s there, so I reach down anyway, and pull that thin white invisible hair up with a ‘Gotcha!’ feeling – and I know what He’s trying to tell me today, just this minute, just for now: if you can feel a single hair on your wrist, and KNOW it’s there, you have the sensitivity you need to write.

It has been a tough time. The Amazon ads don’t work – I have not yet figured out properly how to attract the people who click on my ads to continue on to buying, followed, it is hope, by reading, and then by whatever post-reading effort a reader might make: review, recommend, …

Winter is coming.

The days are significantly shorter, and today is the Fall Equinox.

One more time, I have not used the summer well, and now it’s over.

I think the hummingbirds are gone – I haven’t seen one at the feeder in days. I wish them well, on their long and unbelievable journey to Central America. If I manage to move, as we hoped to, I won’t be here to see them next year – I will ask the next owners to put up the feeder. Maybe they will.

Or maybe they will decide that all these perennial flowers – the bee balm for the hummers, the black-eyed Susans, the butterfly bush, the lilies – are too much trouble to weed, and they will replace them with lawn.

If we are still here next spring, when things need weeding and pruning again, I will have failed – but the urgency isn’t making anything faster.

New beginnings.

I just want to be in a different place for the next thirty years, if God grants me that many. A place with other people around – we have become very isolated, and it’s not going to get better.

The cul-de-sac at the end of the street needs new children on tricycles.

I can clean the windows, with assistance, one more time, but it is getting to be an almost impossible task.

It hasn’t been a good year, what with fires in the West, hurricanes in the Southeast, and earthquakes in Mexico. And genocide in Myanmar. And stents in my arteries.

Will California really be better? I remind myself the Big One hasn’t hit yet. I’m scared of moving, but more scared of staying.

The real reason?

It’s too hard to write when I keep getting interrupted by things I can’t do well needing to be done, and I’m hoping that will be minimized when I no longer feel responsible for a house. And I have a narrow window here to make use of a gym and a pool to improve what capabilities I can, and I want to do that before it’s too late.

So I can write.

I’ve missed my 40s, 50s, and almost all of my 60s due to disability; I think living in a place where someone else is responsible for almost everything has the potential to be better.

I want to be selfish.

Does this resonate? Time passing and opportunities drying up before you get to use them?

 

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Queen of the Ninja Storage Vaults

IT’S THERE; RIGHT WHERE I TOLD YOU

Yes! With fist pump!

Today I found the solder. Let me tell you the story.

I am famous in my family, and even now that the kids have left home, my powers are intact.

IF nobody moved them (that is a fairly important part), I can tell you where an awful lot of things in this house are stored. (It’s also on a card in my storage card file, but nobody other than me looks there.)

I have had that power since before the children were born, but it was just a normal skill, and didn’t develop into a super-power until they were old enough to send on hunting expeditions to the basement (and other places, but the basement is notorious).

The object of my command

was, of course, to retrieve an item I needed (rarely one someone else needed, but it did happen) from the basement storage area WITHOUT me, the maternal parent, having to go down to the basement.

This is the object of the hunting expedition most mothers send most children on.

My mother used to catch me unawares and start her command with, “You’re younger than I am…,” something rather hard to dispute. So I learned from the best (she managed five daughters, a cook, a laundress, a gardener, and a maid or two, with aplomb, but these minions had regular hours, and these orders usually happened after those). Then she would send me upstairs if we were down, and vice versa.

So I would send the Ehrhardtlets down to the basement with very precise instructions describing the appropriate shelf, drawer, or box, and request the item I didn’t want to go up and down two flights of stairs to acquire.

The results of my command

“I can’t find it.”

Or worse: “It’s not there.”

Sigh.

Followed, if I really needed said item, by the traipsing down to the basement (or occasionally up to my office) with said offspring in tow.

And, usually, the highly satisfactory discovery of the item in question EXACTLY WHERE I SAID IT WAS.

Followed immediately by being accused of having ninjas which had quickly put it there, because it wasn’t there when they went down (or up – usually for my good scissors) to look.

Uh huh.

Not just the kids

“I’m going to the hardware store for some solder.”

“We have solder. Did you look in the solder box?”

“There’s no solder in the solder box.”

“Are you sure?” (I’m up three half-flights of stairs.)

“Can’t find it.”

“I’ll be right down; I’m pretty sure we put some away just the other day. You didn’t use all of it, did you?”

“No.”

I go down to the basement. I look to see – having some vague memory of using the labeling tool – whether I put the solder in a different plastic shoebox (and labeled it – because that’s what I do). I look – after asking him – in the boxes where we carefully placed all the parts of the current job that took over the workbench. Nope.

Frustrated, I go back to checking the solder shoebox for the third time.

And there it is! The solder is in the donut-shaped white plastic container, with a loose piece coiled up in the hole. It’s in the box clearly labeled ‘soldering supplies.’ I hand it to the husband, get an incredulous look back.

He has more sense than to mention ninjas, so I, having just located the solder where I said it was, IN ITS PLACE (even though even I couldn’t SEE it), mention them.

We laugh.

And I remain the Queen of the Ninja Storage Vaults.


PS Occasionally it was on the next shelf.

PPS This was used as an occasion of glee.

PPPS I am rarely wrong.

 

 

The slow posts of summer 2017

THE SUMMER SLOW DOWN IS ACTUALLY A SPEED UP

This is a stub, a placeholder, a tente-en-pié (keep you on your feet), an appetizer – lagniappe?

Any one of those words that means a quick update and not a thought-out post with a point.

Why? Because when other bloggers stop blogging, I worry a bit.

Don’t want you to worry. There have been no recent crises – Yay!

On the To Do list:

Writing NETHERWORLD. Yup. Main A1 priority that keeps getting a day here, a day there (the least efficient way for me to write). And publishing Too Late.

Finding a permanent place to live – for which I have, up to now, processed more than 110 CCRCs (Continuing Care Retirement Communities), most of them in California, to see if we can 1) afford them, and 2) find a community we’ll fit into.

Paperwork for my Dad’s estate, too long on the to do list, but the IRS has made each simple step complicated. I will persevere.

Getting healthier. Here I would like to report slightly better walking capacity (after days and days and days of lower back strengthening exercises), and continued cardiac rehab (though I haven’t been able to increase it much since I started, I’m now into my fifth month, which is some kind of record).

Dejunking the house prior to getting it on the market. This means the Christmas tree came down this week. You may applaud.

I think that’s the major ones.

CCRCs in California

The why? It’s drier (humidity and I don’t get along), and the places we’re looking at have better weather. I have been warned – not all places in California have ideal weather. The spouse put me onto the idea of getting an idea of each city from Wikipedia (who knew each has a page?). If there is a Climate section, the little graphic illustrates temperatures, rainfall, and sometimes humidity for a year – which is exactly what I need to compare, say, Sta. Barbara and Bakersfield (nice, not so nice).

I now have had hour-long conversations with about 21 salespeople (the shorter list), along with getting electronic and snail mailed information, and followups. I learned a lot.

The basic information on the websites seems to be 1) we have apartments and/or cottages, and 2) we are the best CCRC in California. So there’s some hype.

Considering that one of the major decision factors is cost, you’d think they’d be a bit more up-front, but if there is information at all, it is usually, ‘from (quotes entrance fee for tiniest unit and monthly fee for one person in it.’

Not very useful or realistic, and I hate to hang up the minute someone tells me the actual numbers (which implies I couldn’t go). The reality is that we have some choice in the matter, but a place is going to have to be perfect for us to go for the higher costs (and most of the for-profit places in the San Francisco area are simply not an option).

I’m to the point of running numbers past a calculator and guesstimating some scenarios on how long we’ll live (always a fun exercise) and how long we’ll need what kind of expensive assistance to do so.

Dejunking is slow going

Not because I can’t get rid of stuff, but because doing so requires me to give my assistant (who’s been a little erratic due to real problems) permission: ever single item in this house not in my husband’s office is my problem.

And some of it has to be kept around so the house doesn’t look razed when we show it.

My brain will tackle that problem far better when it doesn’t need to do phone calls and financial calculations with its little bit of energy, and we have a very short list of places we would willingly move to tomorrow.

And when the heat and humidity abate a bit, and we can stand to dejunk the garage some more.

It’s amazing how much stuff goes when an assistant takes it to its next owner for you (or makes it disappear). Until you get down to family photos and the CD collection you always meant to put on a hard drive.

Exercise, walking, etc.

Here I have to be extremely careful. We CFS folk can overdo things in an instant – and have to pay for it with days of getting nothing done, and huge amounts of extra rest.

I’m so far over capacity already with all the extra stuff on top of what I had before that all I have to do is go to a meeting with the financial advisor (a short meeting, he said – ’twasn’t) to lose two days.

I’m looking forward to living in a CCRC where the plan will be: write in the morning; get more fit/relax/float in the pool/do a short stint in the gym/walk to dinner, in the evening.

I swear.

Meanwhile I have to keep the spine from insisting on more surgery (so far, so good, and I don’t trust any of the surgeons I’ve seen). This requires daily exercise and stretching. Lots. The stronger the spine gets, what do you know: the easier the walking has become.

But we’re talking micrometers. I know – husband can’t even tell. And it’s made me do things I shouldn’t have done (leaving the walker in the car for something that turns out to be a longer walk than I planned is the #1 problem).

And the perennial: removing a few pounds from the joints would probably help; meanwhile, don’t add any.

Removing all cardiac meds made a huge difference to all of the above – zombies aren’t good at becoming healthier. Doctor doesn’t even want to see me for six months; BP and HR are behaving themselves nicely with meditation and rest and the rehab (I guess – had to tell).

The career as novelist

Taking a bit of a beating right now, but moving.

The biggest other time-eater is learning and running Amazon ads. I find I don’t do well when the sales are way down (depressing) because I’m not hand-selling, and going viral isn’t happening on its own.

Which means advertising. The last email I got (review pending) had ‘Loved it!’ four times in a row, so I do have a tiny tribe, but I have no reach – and everyone else on the planet (with energy) is writing bunches more books and ads.

I’m trying various targeting ideas. If any of them work…

But the very best time I spend, exhausted or not, is when I’m in Bianca’s skin (today) or Andrew’s skin (last week) or being Kary for a while (right before that). And that’s still good, if a little claustrophobic: I have to get awfully close before I can write them.

Drop a line

How’s YOUR summer going?

 

 

 

 

 

What to do with past insights

HUMMINGBIRD AT FEEDER

HUMMINGBIRD AT FEEDER

I AM WATCHING A HUMMINGBIRD ESCHEW THE FEEDER FOR FLOWERS

This is a photo so old that it’s my previous feeder! There is a birdie out there visiting the flowers (which have stopped blooming – I need to dead-head more of the bee balm) aggressively – and not stopping to cheat for a drink at the feeder I just replenished this morning. Smart bird! Go for the real stuff.

Not a very good picture – taken from my office window, and the birdies wiggle.

The hummingbird moving in my peripheral vision reminds me to stop, blink, breathe, and look further than two feet away at the monitor.

New feature (for me): bits from the past.

I’m starting a new feature with this post: Insights from my Notes.

I have several millions words worth of notes in notebooks and in my Scrivener writing files, and I occasionally read one – and promptly forget its insight again.

Since I seem dry lately on writing about writing – I’m actually in a place where I don’t want to change much of anything, but just to finish the Pride’s Children trilogy before I forget what the heck I’m doing, or go senile (always a possibility) – I haven’t had much to blog about except illness – and some of the insights of that process.

Illness? Three stents in my cardiac arteries

And I have reached such a place that my cardiologist won’t see me again until January – and didn’t even bring up the fact that I have stopped taking ALL the meds they recommended (on pain of immediate death by massive heart attack).

So the battle there is a stalemate. And I am keeping up the cardiac rehab in my basement – and trying to increase the amount of exercise by tiny amounts over the next few months.

And I am deliberately ignoring all chest pains that are not mule kicks, and all sharp pains that come and go, and anything that doesn’t grab me by the neck and insist I do something, because I am literally tired of living on the edge and overthinking this thing. If the big one comes along, and is silent, it will get me anyway.

I have bigger fish to fry.

Today’s insight comes from March 8, 2016 at 9:51 AM

We have a tradition in this country: Flannery O’Connor, Margaret Mitchell, even Harper Lee, of pouring time, love, and everything you have into the slow writing of a novel. This is what I want.

Some shameless self-promotion now goes with the territory.

So be it.

Putting endless time into something does NOT guarantee it will be good. Not putting time into something does not guarantee it won’t be good.
But with my life, this is what I know, this is what I can do.

I could still be ridiculous, off key, have delusions of grandeur that are not justified.
My ego could be massive with no reason.

But I think it is because I actually have something to say, and this – fiction – is the way I can say it.
Others do plenty of advocacy [for CFS] – and I am shamelessly letting them do the work FOR me, since that is not my charism.
Fiction is mine.

I think I have something good going, and I need to spend the time to finish it – without the fear that dogs my steps.

I bid you all a good day – and hummingbirds.

Writing in a niche market is fraught

AND CAN BE VERY HARD ON THE EGO

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

What is the niche? INDIE NON-GENRE fiction

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

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

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

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

I have not. Yet.

Stubborn I have been since a small child

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

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

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

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

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

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

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

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

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

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

That’s where the niche part comes in.

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

What works for INDIE GENRE promotion?

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

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

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

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

Stealing fire from the indie gods

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

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

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

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

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

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

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

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

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

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

The HOW

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

It may not be doable.

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

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

What I’m NOT happy with

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

Negative:

Readers’ Comments
‘Interesting in many ways. The characters have considerable
depth and the plot is interesting. It could do with a good
editor in parts to ‘cut it down’ a little. Also, parts of it
are difficult to follow. I had to re-read the first chapter to
understand all of it. But, if you are prepared to work, you
will find here a fascinating story populated with strong
characters. Just a note, the cover’s a bit flat.’ Male reader,
aged 42
‘Powerful characters – yes. Interesting plot with plenty of
twists – yes. Well described setting – yes. Very complicated
and a hard-to-follow writing style – yes. This probably needs
an editor with a red pen to cut it. If that happened, it would
be a top-notch EPIC!’ Female reader, aged 56

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

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

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

Positive:

Thank God for positive!

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

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

Why point out only some people like it?

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

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

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

The topic is esoteric to the point of madness

For which I apologize.

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

So I share it with my friends.

You’re already used to me.

Walking around in fear is stressful

IT IS NECESSARY TO CHOOSE TO DUMP STRESS

I’m walking around fearing sudden death, sudden incapacitation, and the need for more time-sucking procedures/tests/doctor visits/hospitals…

It’s too stressful to LIVE THIS WAY.

But after a certain number of life hits on the head with a 2 x 4, there comes a state close to ‘learned helplessness,’ where, if you’re not careful, you LET the stress have free rein – and, while you can’t change reality (whatever that is for you), you have forgotten that you CAN change your attitude.

It never stops, the stress from life

In addition to the medical stuff, which came unbidden and must be dealt with, willy nilly, I now have some dental stuff – and what the dentist thinks is necessary to do.

And I’ve accepted the job of ‘person who locates and chooses our permanent abode.’

Permanent, as in ‘where we – husband and I – will live the rest of our lives.’

The permanent solution to life

We are looking at the particular model of a Continuing Care Retirement Community (CCRC) for a bunch of reasons, the main one being that we want to spare our children (none of whom live close to us now) the ‘problem of mom and dad’ – basically, what to do with us when we’re no longer competent to manage our own affairs, and they have to step in and make decisions FOR us.

We have seen, first hand, how our parents dealt with this.

First hand – and at a distance.

And it is an interesting general problem which we’ve now seen proceed four different ways!

In Mexico City, my four lovely younger sisters have done the ‘huge extended family takes care of mom and dad’ – and are continuing to date with Mother. Done with love, it has still taken a huge amount of resources, and I have been in no position to help with much – I barely manage to visit every couple of years, and do the tiny bit of US paperwork (still incomplete) because my parents are both US citizens.

In the States, my lovely sister-in-law, who has always lived much closer to my in-laws, has undertaken the huge and complete burden much of the time, shepherding her parents as they wished and she could, and pushing for more permanent solutions when they had to be undertaken. By herself, with occasional help from her brother – as she requested it – she is still supervising all the care for my FIL.

We will have no child close, geographically, unless we move close to one of ours (and that child doesn’t move following professional opportunities, the thing that took them far away in the first place). We have no extended family in the States.

And I, with my disabilities, could provide little help to them, even if I lived close.

Making our own choices requires an enormous amount of work NOW

Evaluating places to move to, figuring out finances (husband is doing most of this part), comparing the amenities – and the long-term healthcare options – at each place has become my additional task, added to trying to write, learning to advertise – and the energy-sucking cardiac rehab exercise.

The additional task that comes when you decide you no longer want to be in charge of a suburban NJ house is selling it. Which require getting it ready for market. Which in turn requires fixing a number of ‘little’ things which, while they don’t affect the quality of living in a house all that much (such as a bump on the driveway from a tree root), WILL affect either the salability or the eventual sales price.

And the final task: dejunking a house we moved into in 1981 and reared three children in (and homeschooled them in).

Even with an assistant – whose time has been mainly spent lately helping the Master with the annual gardening tasks, not me with the dejunking – the decisions are mostly mine. And I don’t make decisions easily (that brain fog thing you have with CFS) or quickly, even with help.

There are twin mottos to keep me going: ‘If it doesn’t give you joy, out it goes,’ and ‘If it won’t fit in a two-bedroom smaller apartment, out it goes.’

Even then it is hard to make the decisions, and they must come out of my tiny daily supply of ‘good time’ – which is also my WRITING time.

Compartmentalization – and all the other tricks

The stress accumulates. I notice. I poke holes in it, take the time to do my de-stressing yoga-type breathing. Repeat.

Because there IS too much stress right now, even if the ultimate goal is much less stress.

To Do lists. Using a Scrivener Project for each of the tasks.

Doing the required things – I will not give up the cardiac rehab exercises, even if they are not yet providing anything much in the way of extra energy.

And letting go of the guilt, including the guilt that pops its head up because I can’t contribute what I should have been able to contribute to this household, had I not gotten sick all those years ago. A hardy perennial, that guilt.

And the guilt of actually spending that money we have carefully been not spending all these years, so we could take care of our needs in retirement.

And, almost daily, talking myself down from the ledge of ‘Woe is me!’

Writing suffers when the writer is stressed – normal

Blog posts have suffered, and will continue to, but, ironically, I need this outlet – because it de-stresses me to pin all this stuff to the ground in its little cages, where I let one problem child out at a time, on my better days.

The writing happens most days – though not as long. I have learned to accept that pinning something down on a timeline I haven’t looked at in two years WILL take that day’s energy – and is a GOOD use of that day’s writing time – because it MUST be done.

Most of these are from things I probably should have figured out long ago, but 15 years writing the first novel was already long enough!

I think there aren’t too many left, but have just dealt with a doozy.

And am very pleased with myself because it DID work out – and locked in, again, that odd feeling I have sometimes that I am a chronicler of an actual story. Good if you’re writing mainstream fiction with a long timeline, many characters (64 NAMED characters as of the last time I counted), covering locations in several different countries and states.

My solution to stress always includes writing it out

That’s how I make sense of the world, take the circling thoughts out of my head and acknowledge and record them, and eventually find ways to deal with them.

It is also part of my usual process to… I don’t want to say ‘cheer myself up,’ because that somehow implies putting a false face of happiness on top of the real problems. To talk back, to the stress, to the situational depression, to my feelings of inadequacy, to the long list of things I SHOULD have done and SHOULD be doing which get ignored.

Basically, the MORE dysfunctional I become, or allow myself to become before I notice that it’s gotten me again, the LESS I can do to change anything that’s causing the dysfunction, and so I have to get out of that state. And I’ve already proved – by trying – that I cannot accept chemical help and still get anything done.

So it’s my own resources, the written process after the thinking, and continuing to chip away at everything as long as God give me life and any ability to do.

And it’s a good time to prioritize (which I’m not doing as well as I need to).

MY motto is: “I’m working on it!”

Thought you’d like to know – and me to record – what ‘it’ is right now.

I’m working on it. 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

UNSTABLE ROCKS WILL CRUSH YOU

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

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

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

What sensations am I having that are worrisome?

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

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

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

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

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

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

The question: are these significant?

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

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

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

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

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

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

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

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

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

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

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

PTS anyone? Post-traumatic stress?

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

Always being on alert is more than exhausting.

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

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

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

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

Guest post: patience, boredom, and personal choice in dealing with them

Woman floating in turquoise water. Text: Attitude makes all the differenceWE MAY BE ABLE TO CHOOSE HOW TO RESPOND

Even when we don’t get to choose what happens.

My friend Gay Lyon responded thoughtfully to my whines about patience and boredom, and has kindly allowed me to share her words.

Gay, you’ve thought so much out. I haven’t gone there, because this is actually the first time in which it has hit me like this. I was always able to try to do something, and then that something would wipe me out, and I’d be too exhausted to do something for a while. Repeat.


Gay Lyon on Boredom, Patience, and how she deals with them – better than I do

Maybe there are people who are naturally patient, but I have my doubts. I’m inclined to believe that patience is developed by having no choice. I’ve spent a lot of time the past several years waiting to recover from a crash similar to yours, for days, weeks, months, at a time. I’m on month 5 of this current one. I’ve learned a certain amount of patience, because there’s not a darned thing I can do to hurry it along, and fretting only prolongs it.

In terms of boredom, it’s a question of what to do when you can’t do anything, isn’t it? I can tell you some of the things I do, but I don’t know that you’ll like it, because if anyone had said anything similar to me before I was forced to come up with them myself, I would have thought it sounded preachy and would have wanted to slap them.

My whole life before becoming sick was about DOing. Prolonged periods of having both brain and body conked out have forced me to reflect on simply BEing. Who am I, what am I, if I am not defined by what I do? Do I, does any human being, have any intrinsic worth outside of what we do? Are there ways in which a life which isn’t a life of service can have value? I have no answers to offer, but thinking about it is a way to occupy yourself when you are lying there staring at the ceiling.

Give thanks for boredom, because when I’m feeling really, really sick, I’m not bored, I’m just miserable. Boredom is a sign I’m starting to feel better.

I have to admit, I’m not often bored anymore. I was bored a lot more the first few years I was sick. Most of the time now, I’m too busy to be bored. Not because I do so much, but because I do everything so slowly that getting through the activities of daily living doesn’t leave a lot of time left over.

Another thing which I do when I can’t do anything else is pay attention. Be very observant. Look out the window. Really look. Look at the leaves on that tree; how many colors are there on one leaf? What shape is it? In what pattern do they grow on the branches? Is the top side different from the bottom? Can you see the veining? Applying that level of observation to everything around you fills up a lot of time.

And once you have observed it, as a writer, how would you describe it? Just thinking about how you would put it into words can help hone your craft.

You can apply the same type of observation to your internal self, too. For instance, what is this experience you identify as “boredom”? How does it actually feel? Is there a physical sensation connected to it? Where does it come from? Do you attach a positive or negative value to it, and if so, is that valid?

It’s a cliché to say that although you may not be able change your circumstances, you can change how you react to them. But I believe it’s true that misery comes from the longing for things to be other than what they are. I try to overcome that by actively looking for what’s good (the bright side, if you will) in my situation; things I can be thankful for. The bleaker your current situation, the more challenging that effort becomes.

My whole life, one of my greatest joys has been learning new things. So I ask myself, what can I learn from this? Or what have I already learned, without noticing it?

I hope your time having to rest both your body and your brain is short enough that your question becomes moot. But if not, maybe these thoughts will give you something to do in the meantime.


I’m trying, Gay. It does not come naturally.

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.

Celebrate May 12 International ME/CFS AWARENESS Day

Landscape with sea and mountains; Text: I may never see this in person, because I can't spare the energy. Alicia Butcher EhrhardtWITH A BOOST IN EMPATHY

I wasn’t going to do a post today – what’s the point of celebrating ANOTHER year passing with no real progress?

Mostly I keep quietly to myself, don’t leave home, try to write. Try mainly not to be a bigger burden to my family than I already am, by not being able to carry my share of the normal load of the wife and mother and daughter. I lost the ability to carry the load of the working person so long ago that it seems fictional.

But we never live only for ourselves

And even if I’m already too old to take advantage of the cure and treatment when they come – because they WILL come – I’m here to do the one thing I can still do for others: raise awareness. Raise empathy, sympathy, understanding.

Make the world a slightly better place by pointing out such obvious things as that the person who parked in the handicapped spot MAY have an invisible disability – and your mind should go there FIRST before judging, because it gets so awfully exhausting to be judged able-bodied when you know that after a short while in that store you will barely be able to make it home. And you usually don’t even go.

Fiction is one of the BEST ways to get through the barriers we set up to protect our hearts and minds

If not THE best.

Think of what Black Beauty, On The Beach, Uncle Tom’s Cabin – and countless novels through the ages that have not only SHOWN it like it IS, but have made the reading of that story so compelling that the reader becomes educated while being entertained. And I use ‘entertained’ here in the sense of the reader’s attention staying with the story until the end, even far into the night.

After she FINISHED, one of my reviewers said,

I honestly don’t know how to explain the grip this book had on me from the first. I couldn’t stop reading it, and I wanted it never to end.

When I mentioned on Goodreads that I don’t have many borrows from Kindle Unlimited (KU), so I sometimes get the pleasure of watching Pride’s Children be read in a single day, 0-984 KENP*, my reader identified herself, and said,

“Hi Alicia, I think that would have been me, because that’s exactly what I did yesterday.

You write superbly, and while I appreciate you’ll have readers hungry for more, the care and attention to detail you’ve lavished on Pride’s Children makes me willing not to harangue you about the next book. I was a bit concerned about the depth of emotion experienced by your reviewers – I tend to keep my reading on the light side these days – but I needed something absorbing yesterday and Pride’s Children delivered in spades.”

FICTION has that CAPACITY, of engaging deeply and not letting go until the author is finished with you.

And reading is different. It’s really not the same as binge watching House of Cards. You can distance yourself from HoC. You don’t become Francis Underwood (I hope).

Things you can do – free or low cost – to painlessly develop empathy:

So this is, after all the above, my Call to Action for May 12, International ME/CFS Awareness Day:

One of the things you cannot avoid if you read Pride’s Children is becoming sensitized to the plight of millions worldwide who are victims of ME/CFS. Because you live, for a short while, with what they cannot escape. (PS It’s also an epic love story)

In honor of developing that empathy, it’s a good day/month to:

  • Ask me for an electronic review copy (review optional)
  • Read the beginning sample on GoodReads or on Amazon
  • Read the copy you already have and were meaning to one day
  • Read some reviews and ask yourself if it’s your kind of book
  • Write the review you had toyed with the idea of writing
  • Buy a copy on Amazon in ebook or print
  • Lend a friend your copy, or recommend they get one
  • Borrow Pride’s Children from KU

But be aware it may change you.


I’d love to hear what you do.


*KENP = Kindle Enhanced Normalized Pages (the way Amazon counts ebook pages, which have no actual size)

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

ACKNOWLEDGING DAMAGE

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.

Ouch!

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

Ouch!

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

Ouch!

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

Ouch.

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.

The phenomenon of the one-book author

Image of single orange flower, half open; Text: If you only have ONE STORY, is it worth writing? Alicia Butcher EhrhardtTHIS IS A QUESTION FOR FICTION WRITERS

I have been, since last November, in a position I had not been in in years, and which I neither like nor have coped with particularly well: not being able to write due to major illness and health problems.

Which is kind of ironic, since I’ve been out of commission as a scientist, my true and original career (though I planned to write in retirement, and DAMN! here I am at retirement age and technically retired from a job I was forced to abandon in 1989) for almost THIRTY years. A real shame after all those years in grad school battling to get a degree in a man’s field, Nuclear Engineering, and thirteen good years at major US science labs. But Life does things like that to you, and you roll with the punches, or don’t make it.

So, not to belabor the point, I’ve been out of commission for half a year almost; and now, due to the medications prescribed by my doctors, am facing the very real possibility that my brain will not come back to me, that the cognitive dysfunction which has been a result of the FIVE medications recommended for me to take (and which I’m fighting), and the still head-shaking INCREASE in exhaustion which I didn’t think could get worse.

Yes, I know we all get old and eventually die, and some don’t get to become old first, and there is dementia lurking on the horizon, but at my age, I felt I still had a number of usable years left – until now. Now, I hope I have years left, but I’m starting to get seriously worried about what has happened to my brain to make it even LESS usable.

Ten Early Warning Signs for losing your mind to dementia

This one particularly scares me because I store it years ago, AND I CAN’T REMEMBER – OR FIND VIA GOOGLE – WHERE I GOT IT.

The signs are the same in many places, so I am apologizing in advance to the person whose particular phrasing of them I’m going to show you (please let me know if you are that person, and what you want me to do):

  • Memory loss for recent or new information – repeats self frequently
  • Difficulty doing familiar, but difficult tasks – managing money, medications, driving
  • Problems with word finding, mis-naming, or mis-understanding
  • Getting confused about time or place – getting lost while driving, missing several appointments
  • Worsening judgment – not thinking thing through like before
  • Difficulty problem solving or reasoning
  • Misplacing things – putting them in ‘odd places’
  • Changes in mood or behavior
  • Changes in typical personality
  • Loss of initiation – withdraws from normal patterns of activities and interests

It doesn’t say in this list, or the one a an Alzheimer’s site, that the person’s AWARENESS of their own increasing problems is or isn’t a risk factor; my personal experience was the ability to hope that my people who had this problem were NOT scared and living in a hell of knowing their minds were going, when it was obvious to all of us – probably including THEM.

Since being put on cardiac drugs starting in February of this year, I have had EVERY SINGLE ONE OF THESE EARLY SIGNS HAPPEN TO ME. REPEATEDLY. Sometimes I’m very aware of it, and other times have had to have it pointed out to me that I was not thinking clearly.

I am aware of NOT being myself

It’s pretty obvious.

And when I haven’t been able to write fiction, the one thing I do which exercises my creative brain for a few hours on a good day (assuming all the incantations and spells have been laid, and the careful management of the physical body with rest, food, fasting, pain meds from before, and caffeine), and this started to go on and on and on, I’ve gotten pretty scared.

It’s subtle – NOT being yourself. It includes so many little things you can try to ignore, such as having literal trouble forming a word before you speak it…

So now, rather than bore you with my mental decline…

I would like to examine the title phenomenon: the one-book author.

Where is the place in the pantheon of writers for the person who chooses to or is forced to write but one book during their lifetime?

We have a bunch of famous ones, such as Margaret Mitchell and Anne Frank and Harper Lee (yes, in spite of the abomination of GSAW, which I refuse to blame her for).

In many of these cases, the process took a very long time. The reason for those is that the writer had to learn how to write, and if you have ever tried this little exercise, you know that the first thing you have to overcome is the sparkling story in your brain, compared with what you are able to set in permanent form when you try, especially the first time.

The authors may simply have not wished to do that process again. Or found more interesting and exciting things to do. Or ran up against the world and critics and the nether regions of fame, and decided strongly never to do that again.

Some of them were no longer with us when their one book was available for purchase. John Kennedy Toole (I believe he only has A Confederacy of Dunces out, with a Pulitzer in fiction to his memory) committed suicide; his mother stubbornly kept nagging editors until one published his novel.

How does this affect the READING PUBLIC?

That’s the part in curious about, and it may have changed in these days of self-publishing AND self-promoting.

Single novels written by indies MAY SINK WITHOUT A TRACE.

The continuation of the writing career, a pickup in merchandising, readers discovering the writer and reading their backlog – all of these things are necessary for all but the VERY LUCKY INDIE who catches the eye of someone in just the right position with just the right book.

Many of our successful overnight indie wonders are no more overnight than persistent: they have been writing – and publishing – longer than I have been writing, but fame just found them. A couple go viral each year: in one year it was Darcie Chan and The Mill River Recluse – which she sold 600k of at 0.99. I don’t know what she wrote before that (it was advertised as a debut novel); after that, she was picked up by a publisher, her prices were raised, and I don’t think the following two books did anything like the first in sales. I like her success (though would not want to be picked up by a traditional publisher without having the terms very carefully vetted); the books aren’t my style (they have, like WAY too many books nowadays, a REALLY NASTY SECRET in the past).

But aside from Chan, I haven’t seen a book sell two million copies like The Goldfinch, which was hyped and marketed by big pub (also, not a debut novel, IIRC).

There is a very good reason sometimes

When the first book is not as good as it could be.

Indies fictioneers don’t usually have the means to push that first book; reasonable indies expect their career to pay for itself, more or less, as they go. There’s no point to pushing a first one, if the writer can’t repeat the process in a reasonable period (write, publish, promote the hell out of).

And the most important reason is usually lack of knowledge. An indie, like myself, who spent 15 years writing a book, trying more to finish it properly than market before it’s finished, may have READ about marketing techniques, but has not MARKETED a real book yet, and there’s a huge conceptual and executional chasm between the cliffs.

So, what does that mean for indies like me?

If my career ended with To Be Continued at the end of Pride’s Children PURGATORY, because MY brain never returns capable of writing fiction, what happens to that book? What happens to the story, the ONLY one I want to write until it is finished.

I have been sitting at my desk for upwards of five hours daily since April 8 – with the result of a few notes.

The sad part: I had learned what parts of my ‘process’ could be sped up, and was actually doing quite well writing the second book, NETHERWORLD. Well started, completely planned, and in possession of a ratty old first draft and knowledge of my changed. My plan was to take less than a year to do the next book, another year for the third.

Want to make God laugh? Tell Him your plans.

I’m a good Christian, and a realist: God know exactly what will happen to me, what I will choose in the future, when I will go Home to Him. I can’t change an iota of all that.

Sometimes in the past two months and a half, I would have been perfectly happy for Him to say, “Okay, pack your bags – you’re coming home!” It has been that bad. Many times.

Not my choice, but a realist says, “Yes, Lord,” and brings very little in those bags.

That would leave me with nothing else published, and an unfinished story – which I’m assuming would do the proverbial sinking, sitting on the Kindles of the few people who discovered it since late 2015 for a while – and mostly abandoned.

It hasn’t done that well since it came out – I have a hard time with various of the components.

Price is one – few people want to pay $8.99 for an indie ebook of 167K tightly woven words, regardless of the fact that it’s cheaper than two 80K $4.99 books, or three 55K $2.99 books, and they can get an eARC for free by just asking.

Cover is another – if I had $10 for each ‘change your cover’ suggestion, I’d have a nice little advertising budget.

People who expected a Romance are cutting that it is too long or too slow.

And most readers (mine do better than average) simply don’t review OR tell their friends OR gift a book they like. Sometimes I wonder if they’re feeling guilty that they got pulled in to such a thing about a disabled woman.

And, of course, the ads – have NOT hit my stride there.

So what will happen to PC? PC 1-and-only?

If this is it for me, or my brain, which are roughly equal in importance for me.

But mostly because there would be no more.

I dunno.

I think the famous ones like GWTW had a lot of push in their day FIRST, and then it slowly became apparent the author was not going to write a sequel.

The reason for this post:

Suppose all of that were true: no more of the trilogy, no more books by me, no more writing to push what I already have to justify having spent my entire FREE time during the past 17 years doing nothing else.

Would I care? Yes.

Would I feel I should have spent my time otherwise?

NOT ON YOUR LIFE.

I hope it doesn’t sink like a stone, but I still have it available next to my bed in the nursing home for as long as I’m alive, whether I can read it or not.

And if God gives me life, and a brain to live it with, I will keep going forward.

Otherwise, I’ll try to remember to write out a quick outline of the rest of the story, as my daughter has advised, for anyone curious. They can post it on PridesChildren.com when I’m not here any more.

Assuming I have enough brain to write it.

If you are kind, please pray the dementia is reversible.

Fragility and vulnerability after the stent

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

WHEN ISN’T IT WORTH IT BECAUSE YOU’RE NOT YOU?

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…


 

Side Effects: the dark side of medicines

Chair in front of white desk and white wall. Text: When you KNOW you are not the standard patient, it takes courage to protect yourself. Alicia Butcher Ehrhardt

THE HYPERSENSITIVE PATIENT REACTS WRONG TO DRUGS

As I keep telling doctors who don’t listen, we CFS folk like me often have a very low tolerance for drugs – and have a very difficult time with new ones, because the side effects become difficult or worse before we reach a therapeutic dose (if we start low, and titrate up) that will do something useful for us.

If we get thrown onto a full adult human dose, side effects can come fast and furious and land one more medicine on the list of ‘I’ll never use that cr*p again’ drugs which we’ve tried and not been able to tolerate.

I blame the system which clears drugs from the body, liver and kidneys. For drugs which must be disassembled into metabolites after they do their jobs, this is often the liver. And our livers seem to be delicate, compromised by the job of dealing with the aftermath of NOT being able to convert our food and stores into usable energy. Stuff piles up, and must be processed more slowly.

I can’t tolerate much alcohol (1/3 of a glass of wine two or three times a year, a dilute Margarita on vacation) for the same reason: alcohol is processed by the liver, and I feel unpleasantly drunk on the small quantity – and the feeling lasts for much too long a time for me to look forward to drinking.

I say blame, but the poor liver is doing the best that it can.

It is MY job to try to protect my liver from unreasonable additional demands.

I say try, because the one thing you know for sure when you end up in a hospital with chest pains is that ‘they’ are going to try to do something about that, and the something is often drugs – drugs designed and tested on (usually) adult males. Leaving aside the shameful proportion of women in most studies (0-25%), and the idiocy of using results on men to dose women, the insistence of the cardiologists on interfering with anything cardiac in your system – blood pressure, cholesterol, platelets – with drugs is hard to refuse or moderate when you are in the middle of an emergency.

So you get subjected to ‘the protocol’ of recommendations from some panel at NIH or the American Institute of Cardiology or whatever – because, supposedly, this is best for the majority of people in your ‘condition,’ which, at this point, has often not even been properly diagnosed.

‘Statistics’ show more people survive out of the center of the bell curve. So that becomes the norm for EVERYONE.

But what if you’re NOT everyone, and out on a tail of the distribution?

Tough cookies.

The protocols are so regimented that doctors will NOT ignore them – they fear being sued.

If they damage you by following the protocol, they have given you the ‘standard of care,’ the best guess of the whole medical establishment (that sounds so formidable, doesn’t it?), and no jury will convict.

If they have, instead, NOT followed the guidelines, and they damage you (you are damaged, ergo ‘they’ must have damaged you), they may find themselves defending going ‘off protocol’ in front of some jury without a medical degree in the bunch. And will be accused of following their own judgement over the combined wisdom of the medical profession and all the professional licensing boards, and… you get the drift.

They will even TELL you this, and tell you that it is all UP TO YOU to make a decision, knowing perfectly well that people in the throes of a heart attack are in no condition to make an informed decision about LUNCH. And will sign the form, regardless of whether they would do that on any day in which they knew what they were doing.

Add to that the fact that many of these drugs mess with your mind, and your spouse and children are terrified, and you’re afraid the doctor will refuse to treat you if you refuse to follow instructions – and most people open their mouths or bare their midriffs and accept the doctor’s ‘choice’ of drug.

Not a good system.

Better than none at all?

Just hope you’re in the middle of the bell curve and are having a nice standard heart attack – the one that generated all those lovely statistics and is helped by the protocol.

What if you KNOW you are not that patient?

Good luck.

Keep track, as best you can, of what you have taken, why (if you even find out), how much, and whether you had any alternatives at the time. This is extremely hard to do with zombie-mind; a spouse or other person with you – and a single notebook – is the best protective device: don’t leave home without one.

Make the person giving you things SLOW DOWN and explain them. Have them slow down enough so you can WRITE what they say down in your notebook – and read it back to them.

They have the WRONG information on you

I found an awful lot of errors of very basic details when I slowed people down to ask these questions.

“You’ve been taking this for your blood pressure…” “No, I’ve never had a BP problem, and the first time I took that drug was yesterday when YOU told me to take it.”

“It says here that you are a diabetic so I’ve ordered the diabetic diet…” “No, I am NOT a diabetic, have never been one, and have never even had a glucose tolerance test. Someone before you decided a single lab result ten years ago where a single reading was higher than normal and in the PRE-diabetic range made an annotation, and I can’t get hospital records to remove it.”

“I see you had three stents put in yesterday.” “No, I’ve had three catheterizations. On the first, two weeks ago, they did nothing, said the pain wasn’t cardiac, and sent me home. On the second – last week – they stented a place which turned out not to be related to my chest pain. And on their third try, they finally seem to have placed one of two more stents in the right place.”

“I see you have a cardiac problem, so you’ve been ordered the low-salt diet.” “I don’t EAT a low salt diet. Maintaining proper blood volume is a serious problem for those of us with CFS, and I take EXTRA salt and EXTRA potassium on my food EVERY DAY so I don’t need IVs of saline.” (This last one is a non-starter: they are so wedded to their ideas that they can’t comprehend this. I have my husband bring in a salt shaker.)

How is all this relevant right now?

For the last three weeks, after I dumped all the other cardiac drugs they gave me in the hospital, which had major and impossible side effects (see prior posts), I have been trying VERY hard to stay on the dual anti-platelet therapy (DAPT) which the interventional cardiologist (the guy who places stents) insisted was absolutely required to keep the stents open, and wanted me to take Effient + a baby aspirin for at least a year, probably a lot longer.

So, for more than two weeks, since the other drugs were out of the system, and not – finally – causing the side effects I stopped taking them because of, I have been on a SINGLE drug.

EFFIENT. Prescription brand of prasugrel.

Nothing else, except the Celebrex I’ve been on, at the SAME dose, for more than 15 years – the only drug I could tolerate which would remove most of the CFS pain. (Let me tell you some day about that years-long struggle with pain specialists to find SOMETHING that would work. Not today.)

So when I noticed that my BP was creeping up, after having been reasonable (under 140/80), and that the intestinal cramping which has become a major problem was getting worse, I wondered what was going on.

I have been writing EVERYTHING down since the hospital, so I have a record of every drug taken, when I ate what, what the ultimate results have been, and any other symptoms (my temperature variation has been much worse than normal, for example).

Saturday evening I had a BP spike that got up to 180 something. A racing heartrate was uncomfortable. I went to bed, got some rest, and the next morning things seemed better. The spiking seemed to correlate with the cramping (correlation is not causation), and eating made things worse.

I determined never to eat anything again.

Sunday afternoon, I started feeling the prickly sensation on the back of my hands and arms and a spaciness which is annoying, and started taking my blood pressure at hourly intervals. The racing heartrate was there part of the time, but not always, and rest helped.

I finally figured it out: I was on ONE drug. It HAD to be the Effient.

I did NOT take the Effient dose on Sunday night.

When the BP hit 224/107, around 12:30 that night, husband drove me to the hospital.

There, the triage nurse got 200 something/117, and they decided I needed an EKG. And then, oh joy, they stuck me in an ER cubicle – a doctor came in, bothered the cardiologist on duty, and eventually something odd happened: the BP slowly came down over the next four hours in the middle of the night, me trying to get some sleep, and husband hunched over a chair.

But they didn’t give me anything – which actually turned out to be a saving grace – and sent us home after 4AM to recover, sleep, and with instructions to go to the cardiologist that very day.

Monday morning quarterbacking

I talked to the office nurse because the BP was climbing alarmingly again as soon as there was someone there. She arranged for an appointment that afternoon. I had remembered during the night that one of the meds I dumped earlier was amlodipine, a calcium channel blocker, which carried the label designation: take if BP is over 160/85. I asked the nurse if I should take it. She said yes – I swallowed one of the little devils.

By the time I got to the office that afternoon, the BP was down under 150, and we all stopped freaking out. Well, okay, only husband and I were freaking out. There is nothing like the nurse telling you your BP is fine to calm you down (and no, I don’t have anxiety), and make you willing to listen. Somewhat.

The cardiologist I saw (another new one – I’ve seen eight of them at this practice now) because mine was not there on Mondays, noting in my chart that I refuse to take the Effient any more, put me on clopidogrel (Plavix generic), retaining the baby aspirin, and sent me home.

Nice guy – but the first thing he did was lie to me about how absolutely necessary it is to take your DAPT because the results of not doing it are catastrophic (they are not – I’ve been reading the literature). He implied IMMEDIATELY catastrophic (gave anecdote – not data).

He also lied – and said, TO MY FACE, that a high blood pressure is not a side effect of Effient.

I decided not to argue at this particular point, since he’s not my regular cardiologist, and left with instructions to take the plavix, the baby aspiring, and the amlodipine again, until, in three weeks, I see my cardiologist.

Good enough for me – when I see her, I’ll have bloodwork and three more weeks of journaling.

For now:

I took the little devil plavix-clone last night – and will take it tonight.

I took the little devil amlodipine this morning – and will continue to take it for at least a while…

But I already know the amlodipine and the plavix have an overlap of potential side effects (so I won’t be able to pin any problems on one or the other), and that the Effient in my system would take a NORMAL person 7 days to clear, and have no idea how many days it will take this particular person with CFS to get rid of.

So I have no idea what to blame the rollercoaster BP of today on, nor the exhaustion (hospital, too many doctor visits and research papers read, the plavix), nor anything else.

Especially not having a brain which would write fiction today. Which is why I sound so grumpy – I was finally starting to make progress when the side effects decided to take me out again.

The gut cramping has been erratic, but seems less horrible, and I’ve been able to eat without setting horrible side effects off (just minor racing heart, and the BP fluctuations).

Because of surviving the hospital without anything, I’m going to assume I can just ride out anything the amlodipine doesn’t clobber (or causes itself).

Unless the BP diastolic (lower number) reaches 110 (apparently that’s when you’re supposed to head for the hospital). At which point I will consider a second amlodipine – and go to bed – rather than waste the taxpayer’s money being observed. ERs are NOT friendly to people with CFS: those required protocols again.

Am I still grateful to be alive?

Is our beloved Pope Francis Catholic?

Yes, I guess, but by the standard of expense (this is all being VERY expensive) and inconvenience, this whole drug-roll is taking the tiny bit of quality of life I was starting to regain back out to sea.

What do I really want?

To not be on ANYTHING.

There is research which shows practically no difference between a month of DAPT and a year or longer. It’s been a month.

I have no desire to play Russian roulette by trying every BP drug out there – when we all agreed I didn’t have a BP problem until their drugs gave me one. And the new stuff has no guarantees (regardless of what they say at the cardiologists’ about how wonderful these drugs are – I now KNOW better; before, I only suspected it).

I suppose I could continue to take the baby aspirin if they insist.

To be allowed to go back to my hole, now with the better blood flow due to the stents (I AM grateful), and slowly work my way up to a slightly fitter version of sick me, something I was starting to do late last year – but which was probably impeded by the lack of adequate blood flow to the muscles. Even for me, things were not working well.

If in cardiac rehab*, fine; if not, I’ll do rehab on my own once they tell me what they need me to do, because the CFS standard there is to do 5 min. several times a day; rather than 40 at a gym followed by a crash. [*More on that little adventure, which has begun with an awful intake process, later. I moved it back a week since I had this additional ‘experience.’]

Film at 11 – hope I survive the next couple of weeks, or there will be phone calls – and blog posts.


Don’t forget to leave a review at Amazon for Book One of the Pride’s Children trilogy if you are so moved. They always lift my spirits, especially when days pass and writing is on hold.

I am VERY proud of myself – before the last weekend, I was going gangbusters with writing Book 2, and any time my brain cells are ON, I am writing. I am determined – not that I wasn’t before – but this STUFF reminds me what I want (other than not being on drugs).


Has anything like this happened to you? Or are you lucky, like my husband, to usually not get much in the way of the side effects roller coaster ride?