Tag Archives: CFS

Writers have only so many hours

Desktop with coffee and office supplies. Text: The longer the to do list, the less efficiently I handle it. Alicia Butcher Ehrhardt

OF 24 HOURS IN A DAY, 2 OR 3 OF THEM ARE GOOD

I mourn the loss of reading material online, which is hypocritical of me, as I’m also NOT producing any of it myself on a regular basis. Blog post reading material, that is.

With me, having two main tasks on the plate is a stretch. Right now I have several – and the blogging has suffered.

I apologize for the self-centered post to follow, but it may explain the hiatus a bit.

The A1 task has become ‘finding a place to live.’

I am vetting Continuing Care Retirement Communities (CCRCs) in California, with a few in NJ and PA for comparison.

I had hoped we’d be out of here by now, resting after our labors in a new community, preferably in California (land of better weather and my birth), with the time-consuming search behind us, and nothing more challenging, apart from my fiction, than using the new pool and gym and having dinner with other compatible residents.

The problem: it is a ‘forever home,’ and will require quite a lot of our money over the coming years, and, even though we could change once we got there if we didn’t like the one we picked, we’d be older, possibly frailer, and it would be a physical and financial challenge.

So, pick well – and give the community the rest of your life.

So, picking well is crucial. And hard.

The A2 task has become ‘get rid of this house.’

The reason we’re moving, and not aging in place, is that THIS house and yard and my lovely perennial garden consumes way too much of our energy, and our social life is diminishing to the vanishing point as OTHER people leave. And the common-in-this-day: our children do not live near us or each other, and that won’t change.

My mother, in Mexico City, is lovingly taken care of by a rotating staff of three aides – supervised by my whole family. I can’t expect that – no extended family here. I hope we get the kids to supervise when we’re older, but it will be remotely most of the time. We had our children very late as we established OUR careers, and they are barely getting started in many ways – one of the unforseen consequences of me listening to all the people who said you could wait. Plus I never expected to be sick. 28 years this November.

We are being responsible with time, money, and our wishes, and setting ourselves up now, BEFORE the crisis that usually precipitates moving (often then into Assisted Living or a Nursing Home) for older adults.

We also plan to enjoy the freer lifestyle – there is no point to having a suburban house unless you have a lot of family or friends there frequently. One of my ambitions is the ability to travel – because the grass is not our problem, nor the drains, nor freezing pipes… You get the picture.

Many of my generation are starting to see the benefits, and doing the same thing: move while you can enjoy the Independent Living part of the new place, be already situated in a place you chose when you need more care.

So: DEJUNK the place, fix it up, sell it – find new place, move in, fix it up a bit. Unfortunately, for someone like me, this is the same as a To Do list item: climb Everest.

The A3 task is: finish my dad’s last tax return

And do Mother’s for the last couple of years.

I finally got one step further on this task.

A bit of background: as the only child in the States, it has always been my duty to take care of such things as my parents needed. They were both American, and lived in Mexico. And my Daddy was, if not secretive, definitely of the older generation, which kept things close to their chests – especially finances – because it was nobody’s business but theirs. Daddy always paid whatever taxes he owed to the USA as an expat. He was a WWII veteran, and an honest man. I miss him a lot. I don’t get there to see Mother nearly enough – and it is a hugely exhausting trip for me.

That wasn’t a problem, but the orderly transition of information was never made, and a bunch of things had to be regenerated or reconstructed after Daddy died, and the IRS made this rather difficult because there were pieces I had to justify acquiring.

Needless to go into detail, but I now have the information I need to file those tax returns, which means that job goes to the head of the queue, as it has been several years. It wasn’t CRITICAL, because there will be no taxes OWED (fines are based on unpaid taxes), but I really don’t want to have to carry that paperwork with me as we move, and risk both losing it, and having the whole filing be postponed MUCH longer.

The A4 task is: writing Pride’s Children: NETHERWORLD (formerly A1).

This is the real reason for fewer posts: the writing is happening when I have the brain and the energy, and I’m much farther along than before. Book over blog posts.

On bad days, if I can write at all, the text seems leaden and ungraceful, but I plow ahead, and have been pleasantly surprised to find that the graceless prose requires far less work to bring it up to my standards than I expected: being tired and low while writing doesn’t get in the way of the fact that the PROCESS I use is solid.

Though, as I stated in a comment recently on FB, no one in their right mind would use my process.

But it WORKS for me, still allows me to put together this vast story by creating tiny individual mosaic tiles to cement into the solid overall framework with some tweaking but no loss. I marvel at this. It’s taken twenty years+ of writing to get to this point, of knowing exactly what to do (except for the art part – that comes from no conscious process I can see or summon): gather everything I have decided must go in a scene, and the process plus subconscious turns it into a short story.

Because that’s how I see every scene: a short story, as complete in itself as I can make it (without the redundancy of creating the world anew each time).

The A4′ task is: marketing Pride’s Children: PURGATORY (formerly A2).

With only one of me, and so much effort in the marketing department being unfruitful (you have no idea how much time I’ve spent on Amazon ads this year, but it was a huge commitment which hasn’t panned out, but may, one of these days), and that me being so low energy, it is currently stalled.

And likely to be ignored a lot, while at the same time I mourn having no sales or borrow except the occasional one I generate at great effort by hand. I’m mourning a lot of things right now – what’s one more?

But this one is actually a drain on the spirit, even though I hope the publication of more works will be the promised kick to sales of Book 1. This is practically an indie promise: write more books, and you will do better.

Which begs entirely the question: nothing will happen without marketing, and marketing two or three is more work.

The rest of the list: singing, a bit of socializing, life.

Less of all that every day – my folk group singing is yielding to the reality that I’ve been in this group for years, if not decades, and every single one of us is that much older – and now finding it hard to drive at night. In its current form, its days are numbered. We’re singing along, waiting for the old dear to have one of those crises I wrote about above.

I thought I had lost my choir singing on Sundays; after the stents, the meds gave me anxiety and panic attacks of major proportions, and I’ve written about the Post-Traumatic Stress created, but most of that seems under control since I am NOT on the meds (and I’m doing my cardiac rehab in the basement, thanks for asking, three times a week). I’m actually better at climbing the stairs to the crypt of the Princeton chapel where we practice (NOTE: shortness of breath IS a sign of possible artery blockage – you aren’t getting enough oxygen!). Now I’m worried about the voice part, which I always knew would happen some day, but it may get a bit better, at least until we leave, if the STRESS level drops. Singing is largely breath support, and stress makes that harder.

And the socializing, when it happens, really wipes me out – but is psychologically necessary. I look forward to it being less stressful in the CCRC, or why move? And I will be missing all my friends, which won’t help. I’ve asked to go to the annual folk-singing picnic by Skype.

That’s the update.

There sure has been a lot of adrenaline – which I handle badly – attached to these events and their outcomes, and the ability to cope, which involves being able to really rest for at least a half hour out of every three, has been severely compromised (and I have no idea how it will go when we visit 5-8 CCRCs in California in the 10-day or so trip I still have to plan).

But I am hopeful.

And I am WRITING many more days than not.

And I am making PROGRESS on NETHERWORLD, which is REALLY the A1.

Peace to all of you. How are you?

For your trouble, here is an epigraph from Chapter 22:


The heart does not rest
For at battle with itself
It can never win.

Tahiro Mizuki,
trans. by R. Heath


My appreciation, again, to Stencil for allowing me to produce the graphics which head many of my posts.

 

 

 

 

 

 

 

 

 

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Structure and me we’re old buddies

STRUCTURE – FREEING, NOT CONFINING

Doing my visits to my favorite blogs, I ran into a new post on Maverick Writer (recommended because has such novel ways of looking at writing) about a writer for whom the hallowed three-act structure, re-examined, provided new insight.

Catana writes in a number of fantasy sub-genres, and we’ve had some interesting conversations about many topics, but I didn’t realize until this post that she’s a dyed-in-the-wool pantser (at least I think she is, from the posts and her comments).

I always find it fascinating when someone tackles long-held beliefs and finds something usable in the opposite to what they’ve assumed, whether they change or just incorporate some of the ideas, because writers, especially older writers like me, NEED to do that and remain flexible and open to ideas.

I, myself, can pants for as long as maybe ten or twenty pages (which need revision). I have to work hard sometimes to bring my own posts into some kind of logical format before I send them out into the void, some days more successfully unified than on others.

Structure is how I manage to write

For me, with the brain fog and the CFS, who can’t remember from one day to the next sometimes what she had for breakfast, structure is critical.

I don’t have to create a soaring 150 floor building all at once – I can set up the structure, and decorate one apartment at a time. On bad days, I can decorate one room in the apartment. And on really bad days, I can paint the cabinet door in one room.

I’m very aware other writers can hold their entire book in their head. I might have been able to do that now had I not gotten sick, but that ship has sailed (I routinely carried an awful lot of subroutines in my head when I programmed, and their connections, so it’s not too farfetched).

But I can’t. And, to tell the truth, it’s an awful lot of stuff to carry around.

The three-act structure, revisited

She’s giving it a chance. I hope she finds some useful pieces, as the desired result is always a story that hangs together.

I was going to comment, and it got too long, so:

As for me, extreme plotter that I am

I live and breathe structure, because it FREES me from the plot after I set it up. Then I can concentrate on characters, and themes, and just the right amount of scenery, and language…

Today I was working on a scene which is pivotal to Book 2, even more than many. I started from scratch – the old rough draft is hilarious. But I knew why this scene needed to be here, and what would happen if it were not (the story comes to an abrupt halt). I knew who was probably in the scene – and it didn’t change the structure to make a few small changes there. The scene had no preferred physical location, as long as its aim was accomplished (and it is in Uttar Pradesh, India), so I had the fun of brainstorming – and came up with something I never would have thought of before that I think will give it a great punch.

When I got to my question on foreshadowing (every scene gets asked that question), I saw oooh! a perfect opportunity. In it went – because I know the foreshadowed event will be happening, and this will make it not seem to come out of nowhere. Moving an interaction from a later scene into this one – because the structure allows it – lets me add some conflict which actually affects the aim in a usable way.

Etc.

Getting the whole to hang together

Otherwise, each one of the ideas that come to me while writing could be a dead end, and waste hours and pages, and mire me in mud.

I hate throwing away usable words, because I work hard now while writing the words to make them be good from the beginning. I toss lots of stuff – but compare it to the structure as I decide to toss (or move it elsewhere – after all, my brain gave me those words for a reason).

I think this one will be fine with around two beats, and the material is starting to organize itself into two piles that ‘go together’. Beats are my in-scene structure. Each scene needs a first and last line – which connect the scene to the chapter and the book. Within the scene I need (as per The Fire in Fiction) an outer and an inner turning point so the scene is coherent as a whole.

Anyway (nobody ever asks about structure, and you didn’t really ask, but I love it), when I start tomorrow, I will have all the sequins – and the costume cut out, and the assembly may take as little as a day (assuming my brain is on). Works for me.

Like making a collage: first I gather substrate and pieces, then I affix them where they please me, then I hang it where I always intended to.

Reader or writer, what is your gut feeling about books that do – and don’t have structure?


Stencil gets my thanks for making easy graphics possible. Give them a visit.

Check out PC’s reviews on Amazon – just got a sparkly new one!


 

Writing in a niche market is fraught

AND CAN BE VERY HARD ON THE EGO

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

What is the niche? INDIE NON-GENRE fiction

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

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

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

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

I have not. Yet.

Stubborn I have been since a small child

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

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

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

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

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

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

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

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

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

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

That’s where the niche part comes in.

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

What works for INDIE GENRE promotion?

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

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

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

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

Stealing fire from the indie gods

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

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

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

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

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

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

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

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

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

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

The HOW

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

It may not be doable.

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

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

What I’m NOT happy with

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

Negative:

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

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

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

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

Positive:

Thank God for positive!

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

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

Why point out only some people like it?

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

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

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

The topic is esoteric to the point of madness

For which I apologize.

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

So I share it with my friends.

You’re already used to me.

How to pick a forever home

CHOOSE VERY, VERY CAREFULLY!

I’m in the middle of a huge search.

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

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

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

ALL OF THE FOLLOWING ASSUMES YOU HAVE SOME CHOICES.

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

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

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

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

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

Facing the facts in time

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

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

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

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

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

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

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

We are fortunate to have options

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

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

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

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

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

The parameters to the decision

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

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

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

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

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

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

These will be the best years we have left

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

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

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

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

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

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

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

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

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

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

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

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

Don’t cry for me, Argentina

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

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

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

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

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

 

 

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?

 

 

 

 

 

 

 

‘Revenue-enhancing’ has become a dirty word

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

Even if you have insurance!

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

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

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

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

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

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

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

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

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

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

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

The result? Constant vigilance is required.

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

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

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

Am I exaggerating?

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

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

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

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

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

I wonder how the older folk cope?

Has this bitten you?

 

When there’s been a hole in your writing

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

HOW DO YOU KNOW IF YOU STILL WRITE LIKE YOURSELF?

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

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

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

Life events change people

And writers are people.

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

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

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

But I question such gifts.

Is it real?

And is it still me?

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

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

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

But first I have to know.

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

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

If you notice

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

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

Oh, and: has this ever happened to you?

 

 

Writing poised under the Sword of Damocles

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)

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.

PTSD from medical trauma is REAL

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

I HAVE PTSD

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

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

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

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

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

It doesn’t help.

‘Trauma’ includes medical trauma

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

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

A couple of quotes might help:

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

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

and

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

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

Women are more than twice as likely to develop PTSD

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

From Facts About Women and Trauma:

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

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

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

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

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

And cardiac events in women can be extra stressful

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

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

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

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

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

My own risk factors should have warned someone:

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

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

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

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

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

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

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

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

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

From Screening for PTSD:

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

What will I do about dealing with PTSD in myself?

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

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

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

From HeartSisters again:

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

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

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

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

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

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

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

Fragility and vulnerability after the stent

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

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?