Tag Archives: disaster

I write today in Uttar Pradesh

THE MOUNTAINS I CAN’T CLIMB ARE MINE

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

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

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

Victory after a month?

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

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

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

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

Research tools have changed

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

Today, I had to pay for that.

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

Google Earth: villain and hero

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

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

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

There are many side benefits to spending time with errant details

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

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

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

 

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The delicate sensibilities of a writer

THE PRINCESS AND THE PEA

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

I look down, don’t see it.

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

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

Winter is coming.

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

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

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

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

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

New beginnings.

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

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

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

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

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

The real reason?

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

So I can write.

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

I want to be selfish.

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

 

Writer education: the first one-star review

Created by Melony Paradise.

Melony Paradise Sure. The laurel wreath is from pixabay so it’s CC0 with no worries of copyright blah blah blah lol. I did grab the stars from Amazon, not sure if that matters… But, feel free to use it however you wish.

AS A WRITER, I DO NOT APPEAL TO EVERYONE!

I am writing this post in solidarity with another writer in one of my writing groups, who is feeling the ouch of the first 1* review.

He/she has received a lot of good advice – from ‘consider the source,’ to ‘what the heck do they know?’ Melony created a badge to be used, because we all told the writer that it is a step every writer has to go through, and it is a badge of honor to go through the process, and that you are NOT a REAL WRITER (TM) until someone has given you a 1* review, especially a nasty one (we’re skipping the little old lady of apocryphal fame who thought she had given the writer a nice Gold Star for her book).

Every writer gets these reviews, and I took notes on mine, intending to let them marinate and simmer a while before doing anything with them, as it isn’t nice to bite reviewers back, and it is considered whopping bad form to do so (for many reasons.) If you wait long enough, and don’t name names, you will accumulate more negative reviews, and you can let off a little steam without identifying anyone.

‘When you publish, you’re going to get negative reviews.’

Notes, April 7, 2015: write your own negative review – to be prepared!

This seems to be blindingly obvious truth. It doesn’t matter what you write, someone somewhere will take exception to something in it, from your title to your name to anything in your content.

I’m wondering whether it isn’t possible to immure yourself and toughen your spirit so that you are prepared to deal with this automatic gotcha, to put up Kevlar walls before you read your first review.

Come on: be creative. You’re a writer. If your imagination isn’t up to this, there are always one-star reviews on Amazon to give you examples.

I would stop short of wishing yourself physical or psychological harm, but that’s just me. You could get creative in that part, too, and find out if you’re selling yourself short, and should be writing thrillers or worse.

There are two main things to attack when writing a negative review about a book: the book – and the author.

I’m limiting this post to the book: if you find yourself wandering off into the part of the internet mentality where you get people whose manners wouldn’t pass muster, and who think that attacking an author for writing something they didn’t like, don’t post the results below (but you may do whatever you want with them otherwise, obviously).

Getting negative reviews written by readers – or non-readers:

Notes: GoodReads reviews, a while back.

Education continues apace here at chez Liebja.

My turn finally came up on a promotional thread at Goodreads (thanks, guys). Three people had enough interest to request a copy for review purposes. They are each supposed to read and then post a review within three weeks.

Two new reviews came in today. [redacted]

I’ve never expected to appeal to everyone – that would be foolish.

That point was illustrated very clearly today, when one review was a 4* review – a Goodreads member’s first review (thank you) which said the story had pulled her in. Thank you!

And the other was a 1* review.

Reacting to a new and different negative review

I’ve had one 2* review before – I was not that reader’s taste. And I was fine with that one, as I am with the new one. I am not to this reader’s taste, either (and no, I’m deliberately not providing a link – if you MUST see it, it’s easy enough to find).

But this one was curiously different. I’m still trying to figure out whether I understand it. Not the review – that’s clear enough. Reader didn’t like it – got it. Not her style. Got it.

But she did what the other one did on a smaller scale, and which I would never do. She made statements about me, rather than the book, and ascribed a status to me based on what I had written.

We call those ad hominem attacks: about the person, not the work.

What is a negative review?

You have to remember that the review is one person’s opinion, and they are entitled to their opinion.

You asked for their opinion. If in their opinion you are a terrible writer and your book is utter trash and needs a lot of work, it’s their opinion. That’s all.

It isn’t truth you need to hew to.

You aren’t going to go out and do penance because you’re so terrible.

It’s just a review.

Go look at popular writers’ bad reviews

Pick an author you really like, one whose books you look forward to and enjoy.

There will be negative reviews. You will disagree with them.

What I consider useful information is that a popular writer isn’t affected by the reviews (too much), and goes on to cash Amazon’s money anyway. Some popular writers have more negative reviews than positive ones!

Your reaction to the 5* author/book

Is “Yeah, right. Must be all from friends and relatives.”

Adjusted reaction to your first 1* review

So go back to work, happy and secure in the knowledge that you have the REAL WRITER’s (TM) credential – at least one negative review, preferably a 1* review – and have survived your Baptism of Fire. (You did survive, didn’t you?)

 

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?

 

 

 

 

 

 

 

I have weeded for the last time

FEELING FOOLISH IS NO EXCUSE FOR TAKING RISKS

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

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

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

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

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

Does weeding cause chest pain?

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

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

On Wednesday afternoon of this week I asked myself:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I have learned this year to advocate for myself better

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

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

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

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

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

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

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

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

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

My new favorite cardiologist

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

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

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

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

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

And he released me!

Subject to the rest of protocol, of course.

Which took until 4 PM.

An unexpected test – and refusing meds

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

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

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

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

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

I’m fine – what did I learn?

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

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

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

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

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

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

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

I hope there isn’t a ‘next time.’

Don’t take stupid chances.

Have you had similar ‘learning experiences?’


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

‘Revenue-enhancing’ has become a dirty word

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

Even if you have insurance!

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

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

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

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

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

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

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

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

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

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

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

The result? Constant vigilance is required.

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

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

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

Am I exaggerating?

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

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

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

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

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

I wonder how the older folk cope?

Has this bitten you?

 

When there’s been a hole in your writing

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?

 

 

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.

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?

Heart Sisters is an amazing blog

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

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

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

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

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

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

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

Depression: unavoidable consequence of life-altering surgery?

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

THERE IS SUCH A THING AS TOO MUCH LOSS

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

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

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

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

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

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

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

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

How do you handle depression?

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

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

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

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

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

But it has the advantages of:

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

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

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

Back to the life-altering part

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

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

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

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

It helps to focus you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is such a thing as too much loss.

I’m perilously close to that point.

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