Tag Archives: brain fog

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?

 

 

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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


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

Patience is a virtue I don’t possess

Water drops. Text: How to survive Boredom. Not very well. Alicia Butcher EhrhardtWHAT AM I SUPPOSED TO DO WITH MY TIME?

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

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

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

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

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

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

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

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

Healing? Feels like a complete waste of time.

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

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

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

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

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

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

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

Exercise? A joke.

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

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

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

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

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

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

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

So what HAVE I been doing?

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

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

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

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

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

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

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

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

There IS no solution that comes from without

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

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

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

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

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

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

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

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


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

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

Dealing with stress after medical trauma

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

ACKNOWLEDGING DAMAGE

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

Humans are fragile.

The point of no return is frighteningly close.

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

Inappropriate drugs in the hospital pushed Dad over the edge.

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

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

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

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

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

Fear must be conquered over and over again

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


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

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

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

I am.

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

Fear. Common ordinary fear.

Ouch!

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

Ouch!

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

Ouch!

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

Ouch.

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

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

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

Common ordinary fear.

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Things are what they are

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

I don’t.

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

Because that’s what stress does.

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

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

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

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

The phenomenon of the one-book author

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

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

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

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

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

Ten Early Warning Signs for losing your mind to dementia

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

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

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

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

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

I am aware of NOT being myself

It’s pretty obvious.

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

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

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

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

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

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

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

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

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

How does this affect the READING PUBLIC?

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

Single novels written by indies MAY SINK WITHOUT A TRACE.

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

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

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

There is a very good reason sometimes

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

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

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

So, what does that mean for indies like me?

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

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

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

Want to make God laugh? Tell Him your plans.

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

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

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

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

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

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

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

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

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

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

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

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

But mostly because there would be no more.

I dunno.

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

The reason for this post:

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

Would I care? Yes.

Would I feel I should have spent my time otherwise?

NOT ON YOUR LIFE.

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

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

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

Assuming I have enough brain to write it.

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

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.

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.

Comments?

Adult drugs mess with your mind

Noisy diagonal stripes with text: Before you say 'Yes to drugs ASK a lot of QUESTIONS, Alicia Butcher Ehrhardt

NAVEL-GAZING CAN SAVE LIFE OR SANITY

****CAUTION: NOT medical advice – I’m not that kind of doctor ****


Written a week ago (Feb. 26, 2017); I didn’t dare post until I knew how this ended

I thought it was just me, by now a neurotic, introverted person overwhelmed by being in a scary situation (chest pain) and a not-safe-feeling place (ambulances, doctor’s offices, hospitals, and ERs, where EVERYONE but you seems to be healthy, loud, bossy, and telling you what to do).

But as I try to recover my sanity and my health from the three stents + angioplasty, and all that implied/implies, I ALSO finally realized that I’m having a major DRUG REACTION to a blood pressure medication called metoprolol (like Toprol), a beta blocker; amlodipine (like Norvasc), a long-acting calcium channel blocker; and/or atorvastatin (like Lipitor).

I never had high BP before (except doctor-induced), and I’ve not been on any BP meds, and as soon as I hit the first ER they start pushing drugs on me. I resisted most of the drugs the first time (and they only had me for an ER day, and then a cath lab in PA day), so it wasn’t until the SECOND ER VISIT, again with chest pains, that they started pushing harder, and I just gave in and let them make me swallow and inject whatever they thought was necessary, whatever was their ‘protocol’ for everyone the same.

The adult drug: metoprolol – an iffy, volatile beta blocker (my opinion)

And that’s when the metoprolol came into my life. For days, I got it twice a day (25 mg. dose). I took it – I wasn’t in a position to argue.

When I left the hospital, they gave me my very own set of everything, which I dutifully took every day – BP med (metoprolol) and emergency BP med (amlodipine – for that BP spike), statin (don’t even get me started about those), and the two drugs I PROMISED, before they gave me the med-imbued stents, to take every day for a year: Effient (a platelet-control thingy like Plavix but better, which is supposed to keep the stents from clogging while they become part of you – epithelialized) plus a baby aspirin (81 mg.). The last two I promised to take; I won’t break that promise if I absolutely can keep it.

Saw the doctor the day after I got out of the hospital, reviewed meds with her (but not problems), reminded her that because of the CFS, and by long experience, I DON’T TOLERATE MOST DRUGS, even in small quantities, and can never take enough to get to an actual therapeutic dose of them. Decades of experience trying to take various things suggested for the CFS had proven I could rarely tolerate something.

For example, it took over three years, and every pain-killing drug in the book (except for the opioids and narcotics, which I wouldn’t take after I found out how much they messed with the little mind I have left – not even for pain). Eventually, we found one that worked most of the time, Celebrex – a cox-2 inhibitor – which is an arthritis drug, and which I’ve been taking, 200mg twice a day, for 15 years. Regular blood tests didn’t show any problems, and I prayed it wouldn’t be removed from the market (like Vioxx – which had problems).

I had explained that I would need to continue this drug for a weird pain which makes all muscle fibers, nerves, and joints burn simultaneously. I KNOW when I’m off it, I KNOW when I’ve gone to bed without a dose. I never need more, can’t manage to reduce what I take to less than 2/day.

She was listening, but I left with no drug changes, and started journaling every single day every single thing that happened to me (the experience kind of focuses your attention on yourself).

And wondered why I was still a zombie

The thing that keeps me sane is writing fiction. I gauge my days by whether I got a bit of the ‘good time’ which allows me to write the insanely complex and layered novel I’m working on.

I journaled every bit of brain activity, food, anything out of the ordinary – and ability to write fiction.

It took me four days to figure it out: late two nights ago, with the worm of certainty gnawing at my gut (along with whatever was making my gut do that wave thing continuously), I looked up the side effects of metroprolol, and some of the inevitable internet comments of those who have gone before (which one has to be very careful with, for obvious reasons).

And convinced myself (I’m not going to bias you by listing them) that the powerful drugs they had me on, the metoprolol plus the statin plus calcium channel blocker, was the cause of me being a zombie AND having the gut symptoms and all the rest.

My solution: don’t take that crap

All I wanted to do, which I could NOT do – I completely lost the ability I’ve had for YEARS to meditate, rest, nap, and calm my heat beat – was get back to the place where I was in charge of my blood pressure and heart rate again.

The first, necessary part had been accomplished: get the hell out of the hospital. I’m trying to NOT be ungrateful for them saving my life and avoiding a heart attack sometime in the future, and chest pains now. Understand that. But getting out of the hospital, and back to a quiet, self-controlled place was not doing what I had expected it to do.

With the new stents, I figured I’d be in the best possible condition for someone like me – able to slowly start my little bits of bed exercise again, lose weight, and start the walking with a heart monitor which I had been unable to build up (probably because of the restricted blood flow making my heart rate go up above the aerobic limit too quickly, even before the chest pain – but I’ll never know that for sure).

So I was optimistic – and I was making NO progress in spite of that.

You might say – and I did – that I was being premature, that I should rest more, that I shouldn’t expect to write fiction for at least a couple of weeks.

Which would have been fine, except that the symptoms I’d been trying to ignore were getting worse, not going away. Sigh.

From my journal:

I made the decision around 4AM that I’m not taking anything but the Effient and the baby aspirin, because I literally promised I would take those for a year.

My gut hurts. Waves of intestinal rolling literally make me feel sick.
My left hip hurts.
I’m queasy – and have been for weeks now.

The beta blocker and statin are NOT required.
I never agreed to a blood pressure medication, because we ALL agreed I don’t have high blood pressure.

I understand keeping my BP down (illegitimi non carborundum) – but I can’t even calm myself down with my breathing right now. If it rises, we’ll talk about that then.

I understand they are more comfortable with a certain LDL target – I am committed to losing some of this weight, but have the feeling I should not be having this much trouble.

My HEAD is soggy and useless, and I can’t live that way. I can’t write that way.

And right now the pain in my universal joint is pretty bad – and I don’t dare take the appropriate painkillers.

Even [hubby] takes ibuprofen when he needs it! But he’s not on Celebrex.

Can’t do this. Won’t do this to myself.
I tried.

The actual decision was to not take the daily dose of metoprolol+statin with breakfast.

Talk about trepidation!

And the results were weird. My head cleared for the first time in as long as I can remember.

The gut was still doing the wave – I shrugged: it wasn’t getting worse. And gut muscles and heart muscles are both smooth muscles – the drug affecting both made sense, and might take some time to wear off completely.

I finally got the timeline of events clear in my head. I know I blogged about it already, but there are significant mind warps with what I wrote (though the two segments, ER to PA and catheterizations are correct, there was actually a SIX DAY GAP between them when I was at home, dealing with chest pain I had been told was not cardiac, before I went to my own doctor to get some help with that…and the second ER to PA and catheterizations started).

Huh. I completely lost six days out of my life.

Yeah, stress. But more yeah, drugs cause memory problems – and confusion.

The day went along, the best day in ages

I almost wrote (I had to get back up to speed). I remembered why I loved this particular scene (22.1 if anyone is keeping track – first scene of second chapter in NETHERWORLD).

I got all enthused. I blocked the internet for 5 hours, and didn’t even mind not surfing – I don’t waste my good time on surfing.

I took my naps – and could do my meditation breathing and calming and even sleeping, just as ‘normal’ from before on a good day. It was still there; the drugs had blocked my abilities.

I had obviously made the right decision.

Hey, I’d only been on the stuff for a couple of weeks, it was supposedly a small dose (50 mg), and it shouldn’t be too hard to cut it out completely, and then discuss the thing later with the doctor (it’s a Saturday, and I’m sure I won’t be able to get through to her then).

I don’t want to be diverted – so I don’t even tell my husband (not such a hot idea in retrospect, but, hey, I’m fine, BP (I measure several times) is rock steady – and I’m feeling HUMAN for the first time in so long.

All I needed was to stop taking the drug which was causing the problem! Problem solved.

You see where this is going, right?

Husband has picked up a cold (I’m sure it’s all that stress of holding it together and driving to PA twice a day for me in the hospital), and is miserable, and I don’t want to bother him.

I am having absolutely no problems. He heads to bed at ten, early for us, and I stay up to surf a bit, feed the chinchilla, and put the house to bed for the night. With a still-working brain.

And the blood pressure spike HITS.

The short version (as if anything I ever write is short):

I take the emergency BP med (amlodipine).

Ten minutes later, and having argued with myself the whole time, I cut one of the metoprolol tablets in half (it’s late in the day), tell myself I should have titrated down more slowly anyway; remember someone on the internet saying that you COULD split these, even though the are extended release (tablet, not capsule – makes sense – or maybe I saw that on one of the side effects pages online); and swallow the damned thing.

And spent the next two hours taking my blood pressure every ten-fifteen minutes, journaling all this stuff, and wondering:

  • should I call paramedics and go to the ER again. For a drug adjustment? They don’t do that kind of stuff, and besides, I have neither had chest pain, nor gotten to the place where I even though of trying the nitroglycerin. I wasn’t stupid enough to even consider driving MYSELF to the ER (five minutes away).
  • should I wake the husband who is sick, who I didn’t tell about my little experiment, and who won’t have any particular ideas except to take me to the ER – why would he have any ideas on how to manage this little crisis?
  • should I take a SECOND amlodipine emergency blood pressure tablet? No one ever mentioned what to do if the first didn’t work! I have no data. Even the internet is silent on the topic.
  • was I feeling anything alarming – other than BP and pounding heart rate – and didn’t people live for years not even knowing they HAD elevated blood pressure?
  • would a short period of this damage my kidneys?

I KNEW calling someone (the Aetna 24 hour nurse, or the cardiologist’s on call person if they had one) would put me in the ER overnight for ‘observation.’ I KNEW that, the same way I know my own name (and birthdate, which I’m going to change, since they used it for ID about a million times in the hospital, and I’m tired of it).

So, what did you DO, Alicia Guadalupe?

Nothing.

But watched myself like a hawk, and wrote it all down for posterity. To go with the autopsy.

When the BP spike was more or less over, around midnight, two hours later, I added it to the list of dodged bullets, was mad that I still had metoprolol in my body – had that really been necessary? – and went to bed next to sleeping husband (who had now at least had a couple of hours of sleep and of course woke up).

I told him the whole stupid story.

He said I should have woken him. I told him why I hadn’t.

He was calm, calmer than I would have been.

We chatted for a while, and he reminded me (I had forgotten – it was 18 years ago) that he had had problems with the SAME drug, metoprolol, after HIS quadruple bypass, which had landed him in the hospital within a week of coming home.

We were awake for a while. The gut is still doing the wave – I’m ignoring it. And actually managed, both of us, to get to sleep before 2 AM and make it through to around 8 AM with only minimum breaks in sleep.

What do I do now?

Play by ear again.

Don’t take anything unless I feel I have to, and then try a one-QUARTER dose of the nasty drug later today if something happens again. And the emergency stuff.

I feel fine. I feel normal. I blogged – that’s something.

Yeah, yeah, I know. Call the doctor’s office. I would, if I could figure out how to phrase the statement of what I want:

Could you please tell me how to get off metoprolol properly?

I’ve done the following… – how do I finish the process?

I’ll call during the week, but is there anything I need to do meanwhile?

I’ve done something possibly stupid, but am okay – what should I expect next?

You see my dilemma, right? They HAVE to respond to ANY question like that with either ‘GO TO THE ER’ or ‘TAKE THE FULL DOSE NOW AND WE’LL DISCUSS IT AT THE OFFICE.’

THEY have no choice. THEY have protocols they must follow or be accused of malpractice.

These are, however, the same THEY who took three catheterizations and a lot of luck, for whatever reasons, to find the thing that actually needed stenting, and have put me through hell (and saved my life – I’m grateful).

THEY put ME into the situation by giving me drugs I never agreed to long-term, in the hospital, and then NOT discussing any of them with me in the after-hospital visit.

No warnings. No ‘Call if this happens.’ No ‘You can take X for pain.’ Nothing beyond ‘If you have chest pains, go to the ER.’

But I’M at least half-way off the stuff, half-way to freedom.

It was a reasonable thing to try (I tell myself). And write it all down in case it is ‘for posterity.’

I’m thinking about it.

I took a shower. I hadn’t had one except the crappy one when I left the hospital five days ago. I figured out how to take one sitting – very low stress – and my hair is now clean, my toenails now trimmed, for the first time in WEEKS.

I’m not worried – but then I wasn’t worried yesterday when I had my first good day, either. (Fool’s comfort.)

My MIND IS CLEAR. Do you have any idea how valuable that is and how horrible it’s been without my tiny bit of brain? Day after day after day?

I have and have had NO CHEST PAIN. The gut might even be slowing down.

Husband is home, seemed surprised when I asked him if it was because of me. No, he said – he didn’t take his cold to church to share with the congregation. Love that man.

I also tell myself that anxiety probably pushed a huge load of adrenaline, the adrenaline I don’t allow myself because my body take days to clear it, into my system, so I probably made it worse than it was. Hindsight allows you to do that.

And there you have it.

If you lived through this little misadventure with me, you have now probably decided what you might do in a similar circumstance – and thus may have learned something.

Most of ‘you’ do not have CFS, and cannot imagine the difference between being a zombie 24/7 for WEEKS, and having a few clear hours, that makes my life bearable. You probably think I’m a total idiot. You would have called. Someone. Anyone.

If you HAVE CFS or a similar chronic invisible illness, this may be more your life as usual than you really care to think about. The drug overreactions, the fear, the lack of understanding among ALL medical personnel, even the ones who seem to understand and agree you’re delicate. You might have done the same, or not, but the thought processes might be similar.

Or you might think: What’s the big deal? She had a BP spike. They happen.

Feel free to weigh in. Politely. I’ll listen, even if I don’t change my mind. I can still take that dose of poison: full, half like last night, quarter. It’s noon, and I really should eat something.


The upshot? A week later I am ready to share the adventure (Mar. 6)

I ignored the third spike, smaller, Sunday night (Feb. 26) – and BP came down on its own, no emergency drugs.

Monday morning (Feb. 27) I called the doctor’s office, told them I’m off their drugs and won’t take them. Told them I am trying very hard not to have to get off the one they really want me to take, the Effient to keep the stents open.

I asked if I could switch cardiac rehab somewhere else more convenient (they really want me to try that).

And I asked how long it would take the huge bruise and tissue damage area to resolve.

They tell me I can switch the rehab to a closer location; ask me to consider taking a different drug after these are out of my system (Zetia, a cholesterol lowering drug); and send me for an ultrasound of the damaged area.

The internet supplied the lovely information that it can take six days for a normal person to clear the drugs I’ve been taking and their lovely side effects; I’m giving it far longer, as CFS people don’t clear things as fast as ‘normal’ people.

It’s far better now (Mar. 6) SEVEN days after the last day with a half dose. The symptoms are subsiding. The head is even clear for periods of time – and I wrote yesterday for a while.

The BP runs 120-130/60-80 just fine with no help. The spikes stopped. The gut is calming down. Every symptom is dropping slowly toward what I’m used to. (There were some interesting sensory hallucinations – I won’t miss those.)

I’m ‘authorized’ to use ibuprofen ‘lightly’ – which helps with the new back pain.

And the ultrasound shows damage, but not to the artery – I haven’t been told how long it will take to heal. The bruise is spectacular, belly-button to mid-thigh on the right, and leaking down like a Dalí painting of a clock on a hot day.

Medical research and you – reading the literature

And I have spent a very ‘interesting’ week reading a ton of research papers on all this stuff.

The more I read, the more I am convinced I will probably not take these drugs – and that prudence would have advised not even starting them, or getting off of them the minute I was out of the hospital. I shouldn’t have had to find that out on my own. Even if they do what they say, my body can’t handle them, so it won’t matter if they do what they say.

I won’t summarize what I found out, but it wasn’t pretty. There is a LOT of it. It gave me a lot of ammunition IF I can keep my BP in a good range as I have been doing for years with meditation, de-stressing, and biofeedback of a sort.

The statins will most likely not be something I can tolerate – I’m guessing the liver enzymes would have shown this in six weeks anyway, but I’d rather avoid the damage.

My conclusion: I am now a ‘cardiac patient,’ which I wasn’t a month ago

That does NOT mean I lose all choices.

I am grateful the blockages have been stented, hope they got them all, still wondering what really went on, and why it took over two weeks to find them all. Hope it lasts, and I don’t need more. Hope it was a quirk of anatomy.

Am pretty sure the relative immobility of a chronically-ill person didn’t help any.

I expect to be monitored, and there will probably be more tests.

But the drug-induced hell wasn’t really necessary: I told them about me, they didn’t listen, I paid. And I learned. ASK A LOT OF QUESTIONS, and if you have time, go to the primary sources.

Do right for your heart but be prepared for an awful ride

Sunset at sea. Text: There is only HOPE WHILE there's Life. Alicia Butcher Ehrhardt

I HAVE DODGED A NUMBER OF BULLETS

I will be terrified for a while.

I will have to deal with emotions both new and accumulated, and emotions are very hard to deal with if you have CFS, partly because the adrenaline which is the aftermath of much emotion takes forever to process out of my body, and so makes me ill for far longer than it is usually worth the original emotional outburst.

I have to deal with new medications I didn’t ever want to take, and which fight with CFS (potentially). I may have to deal with both more pain and with the cardiologists being unhappy I’m taking even the amount of pain meds I was taking before.

And I will have to learn to be more grateful for and more gracious about what may be the most important outcome: that, even in a reduced capacity, I’m still alive. Funny that, right?

I process things by writing about them (the brain doesn’t like to do internal processing, even when it can, any more).

The whole subject is incredibly boring.

And I have some obligation, willingly assumed, to share.

As part of a community, I value my online friends

Enormously. Probably more than most people.

I have a loving family – I am immensely grateful for them. And for the space they give me. They’d rather have me live in Mexico City with the rest of my sisters, live that lifestyle with help, and socialize more. I’ve had a limited capacity for that my whole life, but it doesn’t mean I don’t value it and feel wistful about it. I hope this post will clear up some of the details of the past three weeks for them, too.

But I’m trying to make sense of it AND bring my online friends up to date simultaneously, because there is no energy to do this for each of you (I will probably be sparser in replying to comments for quite a while), and the main lesson is easy and the personal details pretty obvious if you understand limited energy.

I don’t like it when my friends disappear from the blogosphere – but if we knew each other better we probably would be communicating by phone or email more. Even very good friends, family, people I’ve known for decades will have to be content with this for a while. I start from no energy when I’m my most ‘normal’ – and this ‘event’ (as the cardiologist calls it) has taken, and will take for a while, everything I have.

I OWE EVERYONE MORE. REALLY.

THE SHORT(EST) version

I had chest pains Superbowl Sunday after the game (no, I don’t care at ALL about sports, didn’t watch any of it). Kick in the chest by a mule.

Because it was Superbowl Sunday, I didn’t immediately go to the ER or call 911. This was my ONLY mistake, and it could have been fatal, but the chest pains subsided, I felt like I had avoided looking like an idiot, and I went to sleep. (Note: I had had a cold protein shake. This is relevant.)

The next morning (Monday) I called the cardiologist’s office, while drinking my (cold again) morning protein shake. They moved my appointment from later in the month forward to Wednesday, two days away. The nurse told me that if I had chest pains, I should call 911. I hung up – and a mule kick hit. Husband prepared to DRIVE me to the ER (we would have gotten there sooner, it turned out, but don’t do that unless you are VERY sure – another kick, and I lay down in the living room and TOLD him to call 911.)

Uneventful ride to local hospital (feeling like idiot already).

Absolutely horrible and boring day in ER being screamed at by an ER nurse who didn’t want me out of bed (long story – ignore – EVERYONE else was wonderful).

They take blood (3 sets of cardiac enzymes which tell them, over a long period, whether you have HAD a heart attack). Cardiologist who visits insists my symptoms go with a 90-95% blockage. Scares the heck out of me. They keep me overnight, send me from this hospital in NJ to PA one by ambulance in the morning, DO a cardiac catheterization – and RELEASE me because there is a ‘lesion’ but it doesn’t meet the guidelines for stenting (70% blockage). Surgeon does a flow test around it – blood flowing. Cardiac enzymes NEGATIVE.

Next day (Wed.), MY cardiologist goes over the results, tells me surgeon has not found anything stentable.

I PREPARE TO FIND A DIFFERENT REASON FOR THE PAIN, SINCE THE CARDIOLOGISTS HAVE ‘CLEARED ME.’ If you’ve seen my recent posts, the best candidate seemed to be an esophageal spasm. My assumption was that the months of coughing which had recently stopped had left things tetchy and easily triggered. The next morning, I dutifully call my primary doctor’s office, feeling like an idiot. They fit me in at 10. I drive myself.

I get there. BEFORE discussing my question with me (how do I figure out what this CERTIFIED NON-CARDIAC PAIN means and how to fix it), she has the nurse do an EKG, CALLS the paramedics immediately because of ‘changes’ happening right then during the EKG, and I end up in the SAME ER, and the whole process – boredom, cardiac bloodwork  – REPEATS. Cardiologist insists, keeps me overnight and does a stress test the next day – and he says he sees ‘something worrisome.’ I DON’T believe him, think he’s making a big deal out of my small reported comment of some chest pain FROM THE NUCLEAR CHEMICALS. Really, it was NOT a big deal. I want out.

Another overnight observation, and trip by ambulance to PA for a catheterization. This time, because there has been another chest pain event, and there are changes in the EKG from the stress test, the surgeon stents that lesion he’d seen before.

They stupidly tell me that IF the catheterization doesn’t stop the pain, they will be SURE it is non-cardiac, and I will be free to leave the hospital and go do what I was pursuing when I landed in the ER the SECOND time: a non-cardiac reason for the chest pain (about half of chest pain IS non-cardiac – I actually had a consult with a GI doctor who agrees an esophageal spasm is a possible explanation – triggered by cold food).

Imagine how pissed I am the NEXT morning when the mule kicks my chest and THEY WON’T LET ME LEAVE. This is Friday. They can’t force me, of course, so they overwhelm me with talk (I’m exhausted from days of this and hospitals and too many people and NO energy to start with – thank God husband was there and more coherent than me). I agree to let them look into it more. The next morning a different surgeon comes in, looks in more detail at the films ALREADY taken at the first two catheterizations and first stent (I’m a conundrum to them and they’re getting VERY concerned), DOESN’T come talk to me in person (it’s a Saturday – and he sends the cardiologist, another of the overwhelming talk-too-much knowitalls), and he somehow persuades husband and me that I need ANOTHER catheterization (third), that they are pretty sure they know what’s going on, that it NEEDS fixing. He also persuade me to wait for Monday staying flat in bed so the procedure won’t be an emergency weekend one.

It was a horrible weekend. For me. I’m pretty sure I was a hyper-controlled super-stressed trying-to-be-polite sure-I-was-right-and-they-were-wrong-again pain. Bedpans and being interrupted every 10 seconds and ‘cardiac’ tasteless diet will do that to an introvert, especially since we’re now at the two-week mark of this nonsense.

Finally, Monday the second surgeon, knowing I was refusing to go in until I had talked to him, stopped by (I haven’t eaten or had water since midnight and it’s past 11 am), came in, gave me a short and DATA-FILLED explanation, SAID personally (I think) he KNEW what the problem was. And I agree, if nothing more than to get out of there!

Why? Because the other alternative is to leave against medical advice – and I CAN’T DO THAT TO MY POOR HUSBAND. No matter HOW pissed I am, they may be right, and husband should not have to pay for my fit of pique, etc., etc.

They finally take me in for the procedure around 5PM. Cruel.

Surgeon talks to husband after procedure – he not only fixed the very complicated bifurcation lesion he had seen on the films, but found and fixed a 95% blockage lower on the same artery which was actually closer to the region the stress test had indicated was a problem, and which is an odd feature of my anatomy variation. This part is a little fuzzy, because husband thought he told me the details – he may have – but I was still under hypnotics and have odd and possibly false memories of some of it.

So I’m alive. The blockage which probably would have caused an actual heart attack at an inconvenient time has been stented. I have three stents, and the bifurcation got a balloon angioplasty in the other branch, because you can’t stent both branches, and I am on all the meds I didn’t want to even consider because of potential side effects for CFS folk.

Some aftermath, still iffy

The next morning, just for the heck of it, I blow the gasket in the groin, go through unbelievable pain (more than the mule kick – and lasts much longer!) while a burly male and female nurse ‘reduce’ it, and I spend ANOTHER lovely day in the hospital repeating the entire hole-closing procedure (a rate complication, they assure me).

We finally go home on Wed. (two days ago), after the most horribly protracted release process I could have imagined, with a bag of the new pills I have agreed to take until I see the cardiologist for the hospital followup visit I’m supposed to make within the week.

You cannot imagine – and I can’t describe – emotions and exhaustion.

That Wed. night, when I can’t get to sleep, I do a lot of thinking, internet research, and processing of implications. Rather incoherently, but I have to make at least a bit of sense of it.

Thursday morning I dutifully call in to make the cardiologist (mine) followup appointment, asking them to call me back in the afternoon and give me one, if possible, for Monday or Tuesday after the weekend (so I have a chance to rest, recover, and possibly become coherent again).

They drag me in that afternoon. Husband graciously cancels his appointment at the exact same time to take me. I really shouldn’t be driving. Damn. I thought I was going to have a break.

The followup cardiologist visit – too soon?

  • This is where we sorted some of the above stuff out. It was probably good that the bits and pieces were still clear, and necessary for husband to be there.
  • The odd sequence of THREE catheterizations, stress test results, EKGs both with and without problems, ending in the hardware I now own for life, is worked out. My cardiologist is amazed I’m coherent and functional (short periods between naps – I can work this), happy to explain ANYTHING I ask, amazed I’m willing to take their meds, agreeing I am special (that was funny) and that I need to be treated as such (here ‘special’ means ‘different from most other people because of ANATOMY and the CFS,’ but I still liked getting her to say it – whadda you want? I’m human).
  • The anatomy is special enough that it literally made it hard to figure out exactly what was going on. I am grateful that my big mouth didn’t cause them to give up on me – I assume I also worried the heck out of them. I am pretty sure, from her demeanor, she was prepared for anything when I came in.
  • Doing the research and thinking I did the night before was CRUCIAL for putting me in the right mental place to deal with her, the whole ‘story,’ anger, etc., etc., etc. I’m still amazed at that one myself. Though, remember, I’m still alive. All bets would have been off otherwise.
  • Because I’m special, the cardiac rehab will be special. And she is fully prepared to have to do a lot of work on meds if necessary. And isn’t demanding I give up my necessary CFS pain meds (which I finally got back to taking, defiantly, the last day in the hospital). There will be work on those – from a cooperative place.

So what next?

Anyone who cares is now up to date.

I’m exhausted, taking my meds, keeping VERY extensive journals of ALL details – there will be many days of this so I neither exaggerate nor minimize problems.

What do I want?

To get back to a place, mentally, where I can write fiction. Today has not been that place, and the aftereffects recorded in the journal are already at 3000 words, just for these three days so far. The crash is already ferocious; I don’t know how long it will last or how bad it will get, but am not sanguine about what this has done to me.

(Buy the first book if you haven’t and the Look Inside satisfies you in any way.)

I want to update anyone who cares – and then do the smallest amount of focusing on illness/disease/being a cardiac patient when I was no such thing less than a month ago – as possible. Consider this it. Be prepared for at least a couple of weeks of rather minimum interaction from me – not personal, as I love you all and wouldn’t have put myself through this post if I didn’t think it was important in some small way to get most of the chronology in writing and a first cut at accuracy.


I WANT ALL OF YOU TO LISTEN TO THE LESSON:

You MUST rule out cardiac causes of heart pain properly, because my cardiologist said I did EVERYTHING right (one of the reasons she agreed I’m special) and most people don’t, and many don’t make it (I didn’t tell her the one little bit of not going to the ER on Superbowl Sunday night, and going to bed – I am acutely conscious that night might have been my last – that 95% blockage bit).

Note the cardiac enzymes – done several times – never showed a heart attack – I never had it.


I’m wiped and going to try Next Nap.

Stay well. Take care of yourselves. Drop a comment. My online community is as real to me as the RL one. I will take up my responsibilities in it as soon as I possibly can.

Chest pain is not always heart-related

chest-pain

BUT CARDIAC CAUSES MUST BE RULED OUT FIRST –  THEY CAN BE FATAL

Your brain, the precious thing that makes you, YOU, cannot function without oxygen for more than a tiny number of minutes. After which, if it doesn’t get that oxygen, you are no longer YOU, even if you survive.

Get that through your head.

Before you read what follows. And remember it.

The Perfect Storm

I’ve hesitated to write this post all week because ‘The Perfect Storm’ is never apparent except in hindsight. And I’ve been feeling like crap.

As a result of the CFS I live with, you can consider me immuno-compromised all the time. Sometimes it helps to have my immune system cranked up all the time – I fight off many things with a shorter period of malaise than many people. But when it gets overwhelmed, it REALLY gets overwhelmed.

I had been coughing, as a result of first one virus, and then, probably another (probably caught from husband who thought he had caught it from me – and didn’t take precautions – and probably gave already-weakened me the horrible virus he picked up somewhere else), since around Nov. 1, 2016. Sometimes very violent coughing. Painful coughing. But not chest pain. Remember that. Not chest pain.

And yes, I had seen at least four doctors (including mine twice), had a chest X-ray, antibiotics, steroids, and an inhaler of albuterol. My lungs had been listened to carefully, and pronounced good, then diagnosed as bronchitis, then diagnosed as ‘tight’ (whatever that means).

I had the feeling that if I could just STOP COUGHING for a while, everything could get better. I really hope so – I’ve now managed to not cough for two days.

More scary symptoms added – caused by cough? Or revealed by cough?

Older white female, heavy, sick a long time, not very mobile, is not a good place to start anything from.

This is where things get a bit fuzzy. I don’t know when the extra shortness of breath started – because I didn’t record it. I just took my time climbing up the 33 steps from the crypt of the Princeton U. Chapel where I sing on Sundays with a tiny Catholic choir. Was it just the CFS lack of energy? Or was it something new? And was it a result of the coughing, or something made worse by the coughing? I honestly don’t know.

But shortness of breath is a symptom that shouldn’t be ignored if it gets worse. Nor should the tightness in the chest that went with it. If you wonder how I managed singing with the cough going on, it wasn’t continuous, I took over-the-counter meds to control it (paying for their help with the extra fuzziness that hits my brain as my body clears out the meds), and I really like to sing, and there was, accidentally, a long hiatus between the last time we sang in December (the 17th) and the first time I made it in February (the 5th). Vacation, the choir director canceling because he thought there wouldn’t be many people there, and a couple times I was too sick to go and didn’t want to cough on my choirmates. So, a big gap – during which I coughed a lot.

So I sang last Sunday. And noticed things were not good in the pain department, so I took the steps extra slowly.

And then, that night, the first trigger?

Triggers for chest pain

Are not always obvious. In retrospect only, the chest pain flare – significant and scary – Sunday evening was set off by me having a chocolate protein shake. Silly, right? I had had eggs for breakfast, so I decided to have my usual shake at night. I make it with lots of ice, and it’s very close to a milkshake (okay, for someone who doesn’t eat carbs if possible), cold and frosty and tasty.

And sometime shortly after I finished it, a wave of chest pain that stopped me short, raised my blood pressure, and scared the heck out of me – but slowly resolved, leaving me shaking and wondering whether I should be doing something. But you know what Sunday night after the Superbowl must be like at the ER, and if you’re not absolutely sure you should be going to the ER – after all, the pain resolved, right? – you pretend it wasn’t so bad and go to bed. Just to be sure, I took my blood pressure, which was high but came down slowly to almost normal.

That’s the place at which many fatalities happen, and yes, I’m perfectly aware of that.

The next morning I called the cardiologist’s office, and moved my appointment from Feb. 23rd to last Wednesday because they had an opening. The cardiologist was my primary’s idea BECAUSE SHE THOUGHT SHE HEARD A MURMUR – almost a year ago – and I had finally gone to see her, had had the recommended echocardiogram and ultrasound of the carotids, and had that appointment on the 23rd to get the results (which turned out not to be significant, or they would have made me come in). I was being reasonable.

The cardiologist’s nurse whom I was talking to – and had told about the spasms which resolved – concluded with, “If you have any significant symptoms, head to the ER.”

I hung up after those words.

On the cusp here.

Except that, while I was talking to her, I was having my morning protein shake – same as usual, full of ice, I was still coughing, and I drank it at normal speed, not really paying attention.

And in all this remember that I’m operating at much reduced brain speed – because of that infernal and exhausting coughing that just won’t go away completely. I haven’t, at this point, written fiction in weeks – because that requires that all the indicators align perfectly, and I haven’t had that in weeks. We CFS types call it brain fog.

And then it happened: decision time

An unbelievable wave of pain hits me in the chest.

Husband frantically puts on clothes, intending to drive me to the local hospital (in retrospect, I should have let him – they did nothing IN the ambulance), but I lie down on the living room floor when faced with the prospect of walking all the way out to the car, and make him call 911.

I’m coherent enough to walk him through FINDING a non-enteric-coated full size aspirin tablet (he had brough me four of the baby coated ones, and I though they might take too long to dissolve), as the dispatcher said to take. The people who make it first are the firemen – I guess they had nothing to do. They can’t do anything, and they don’t transport, but there they were. To be with us (I suppose they have CPR training) until the EMTs get there. To help me down the seven steps to the front hall (at which point they let me walk myself to the downstairs bathroom just fine – should have taken that as a sign).

The EMTs get there, transport to hospital – without doing a thing IN the ambulance except, as we practically pulled up to the hospital, rolling out the oxygen tubing you see on TV going into the nostrils – which was then on my head for less than 3 minutes. Revenue enhancement? The things you think about!

The chest hurts a lot, but it is, like Sunday night, slowly resolving. The BP has been high, but is coming down. I am trying hard to calm my breathing and heart beat.

At this point you are as committed as if you jumped out of a plane

NOBODY in this whole system can send you home now (and you’re still terrified anyway – chest pain really hurts).

Every bit of exertion IN the hospital sets off the waves to some extent. I duly report this.

I won’t bore you with the rest of the day, the admission to the hospital, the doctor from the cardiologist’s other office who tells me my symptoms are indicative of 90-95% blockage somewhere. And scares the hell out of me. And orders drugs which I later, when they are offered in the hospital that night, I decide can’t possibly help in one day, and I refuse to take drugs without discussing them thoroughly with MY cardiologist and bringing up the whole CFS thing (this was the statin; I think I took the aspirin).

By the way, if it had been cardiac, taking the statin right away is important (said MY cardiologist, but I still don’t see how – she said it prevents even more damage to the heart – must look that up).

And the train wreck continues (as well as the pain, enhanced by fear)

You can probably see where this is headed, but, after a totally miserable night on a hospital bed after being in an even worse, if possible, ER bed all day, with all other indignities not being related here, they haul me off by ambulance the next morning to the cath lab at St. Mary’s in another state (PA), and finally, after a circus of paperwork and other activity, actually go in and LOOK at the state of my arteries, etc., with the view to saving my life by stenting those presumed 95% blockages.

Only to find nothing major (though there are the beginnings of plaque they don’t like), and SEND ME HOME. No stents. No hospital stay. NO prescriptions.

With no one caring about the, you know, actual CHEST PAIN.

Which is the same theme when we see the cardiologist the next day, who now wants to treat me as if I’d come in for cardiac reasons (instead of the benign Level 1 heart murmur which tests show is accompanied by minor calcification) – and start me on meds: no, nothing important wrong, but you really should start taking these heavy-duty drugs which are known to cause significant muscle pain, especially in the CFS population, and memory problems in many (c’mon now – I have TWO brain cells left, and can’t afford to lose them).

No, the drugs don’t lower cholesterol.

No, the drugs don’t REVERSE plaque buildup. Nothing, apparently, nothing chemical can do that.

No discussion of alternate methods of lowering cholesterol (like diet, my only real option as exercise isn’t possible – can’t go aerobic because the body can’t produce energy aerobically).

The end? The summary? The conclusions?

  1. If your chest hurts enough, or worries you enough, you HAVE TO GO TO THE ER. Period. You don’t belong at your doctor’s office, or even at urgent care – they don’t have the facilities should it be, you know, a heart attack. Only a hospital does. I did everything right. At the ER they take blood three times, 8 hours apart or so, and they look for certain cardiac enzymes to be present, to indicate you may have had a heart attack. But this takes a while. Meanwhile, they treat you as if. They have to.
  2. It may NOT be cardiac. Some 23% of chest pain is NOT cardiac OR pulmonary. It might be esophageal spasms, or intercostal muscle spasms (the intercostal muscles between your ribs pull air in and push it out, and they were already in revolt from the coughing. Probably). The pulmonary pain can be separated out a bit, but may not keep you from a full cario workup. I don’t know about that one. The pain/spasms could be chronic or acute, or getting there – you won’t know until analyzing all the evidence later.
  3. I ended up getting a heart catheterization, the gold standard for actually LOOKING, which might have taken a lot longer otherwise – but might also have never been done, especially if the pain resolved soon enough AFTER THE COUGHING stopped. So I have the baseline I, as a PWC (person with CFS) would not be able to get with a treadmill stress test (testing to exhaustion has horrible effects on PWCs; I won’t do it) or chemical stress test (same effects on PWCs; won’t do that either). But it didn’t have to be the whole ambulance/ER/cath lab emergency experience. IF the chest pain hadn’t stopped, I would probably have had the test eventually.
  4. If the doctor you see in the ER gives you meds he says you should take, take them. I did with the ER doc’s meds (I think). It was later, in the hospital bed alone all night (they slap a heart monitor on you and then only come if you call) when I decided not to take the meds the over-zealous cardiologist ordered. 50/50 on that one.
  5. It is possible (maybe) to stop your own coughing – IF it’s on the way out anyway, and you take it very easy, and use the OTC meds (and the cough syrup with codeine I was prescribed at one point in those 3+ months), but it’s a full-time job, and I may only have been fooling myself. By my husband’s symptoms – he who gave me the second virus – I had expected to be done with the coughing by this Wednesday. It happened/I forced it to stop on Thursday by fighting back with every cough attempt. Maybe my yoga breathing helped a bit. I couldn’t do it before, so maybe that’s also completely bogus.
  6. Don’t get sick. And even if you think someone else’s illness is the same as you have, it is STILL possible to hand it back and forth – so keep up with the precautions, don’t get near other sick people, wash your hands a lot… Everything spouse didn’t do.
  7. Try not to have overlapping illnesses. It messes up the diagnoses.
  8. Don’t be stupid – this was a royal pain, a huge expense, and a possibly wasted effort – and it was still the right thing to do.
  9. You may feel like an idiot when it turns out your heart is fine. I did. But you shouldn’t. They really can’t tell, and you really need to know, and you can’t take that chance. And you are the only one who can decide: What’s happening isn’t right, for me. Unless, of course, you’re passed out on the floor and trusting someone else will make the right call.
  10. I am SO glad it is over (or getting there).

Share your own happy experiences in the comments. I’ll listen. Might learn something.

Sometimes there’s a reason you can’t write

A road going off into the snow. Text: Who suffers? That's whose responsibility is it. Alicia Butcher Ehrhardt

COUNTING ON YOUR IMMUNE SYSTEM?

Just because you’re sick doesn’t mean you can’t get sicker

It has been an extraordinary two-month+ period, and I’m only now realizing that it was kind of not my fault. But it also was.

I was seriously worried that my ability to continue to function was deteriorating further. Since I have very little of it, losing more is a continuing concern.

I fight to retain mobility, and still hope, if we move to a place with the right facilities, to be able to regain some. I need access to a gym and a pool, and a safe indoor space to practice walking.

I hope, if we move, and reduce the list of things that go wrong with a house, I will have more time and energy for myself, to write with.

But all of that is useless if the brain has decided to go down another notch.

The past ten years have been mostly on an even keel

I got things, I felt sick for a day, the ‘thing’ went away: my always-on immune system seemed to fight it off. Other people got things like colds – I felt as if I was going to, but most of the time didn’t.

I got cocky.

And then ‘level’ and ‘normal for me even with CFS’ changed – and changed drastically

I’ve been sick, sick enough for it to impair my cognition, for most of the past ten weeks – but didn’t realize it.

My first written notes about the problem pin it to the beginning of November 2016, when I felt ill for a day in a pattern I’m used to, my over-active immune system seemed to deal with the problem, as I have come to  expect, but I developed a cough. I assumed I’d fought of another virus, but was experiencing its aftermath anyway.

Most people who have a post-viral cough will fight it off eventually, because their immune system keeps working away at it. This is where ‘walking pneumonia’ comes from: is it actually a form of pneumonia the body fights off well enough for the person not to need to be hospitalized for the pneumonia. It is serious; the person will feel tireder than normal, not quite right – but most people will fight it off.

For a few of those people, however, the continued coughing, and the strain the coughing and the viral infection put on the system will make the person vulnerable to catching something on top of the original.

So, first I had the post-viral cough. It went on a month – I visited the doctor, and she listened carefully, told me the lungs were perfectly clear, and that these things sometimes went a long time (she’d had it last herself). I was extra-tired, and the visit itself came from energy I was trying to protect. “Call if it doesn’t go away after the holidays,” she said.

What went wrong/wronger?

Another month passed. I was going to call her at the end of the first week of the new year (last week), when I realized a new symptom had appeared: wheezing, always a bad sign. I called the next day, she couldn’t see me, I was told to go to urgent care. Urgent care did a chest Xray to rule out pneumonia or something worse (like lung cancer, which can present as a persistent cough), diagnosed bronchitis (very uncomfortable, I tell you), and sent me home with a five-day course of Azithromycin. I took the last pill this morning.

It should have been enough.

But: During the week after New Year’s, husband developed a nasty cold – and cough. He assumed he’d gotten what I had, and, here’s the kicker, didn’t do anything special to avoid passing it on to me. To be fair, it was a reasonable assumption.

We should have paid far more attention: the cough he had was nothing like the one I had.

The fear of further deterioration

I haven’t been able to write consistently for weeks. Even the post-viral cough was enough strain on my system that it took that little bit of functionality and the little bit of good time I can usually count one every day.

It wasn’t just life (as I may have written). Yes, there was a lot going on with the last chick leaving the nest, and the holidays. I would have expected, did expect, not to get a lot of writing done under the year-end conditions. But, looking back, this was worse: almost no writing – even of blog posts – was going on. I’ve stated before I have 30-40 posts started – and I couldn’t complete one. Apparently, finishing up a post and publishing it takes a little of that ‘good time’ for the final effort to add a few headlines, to make sure the whole is coherent and has a point. I don’t just stop at some point: I clean up, reread, get the ducks in a row, edit, polish, check references, add links… It’s not hard on a normal day, but it does take a bit of that precious energy.

Every disabled person, every chronically ill person, fears one thing: getting worse.

Healthy people don’t constantly think about becoming unhealthy; they even sometimes feel invulnerable (teenagers, especially!). But, for the rest of us, our body has already failed to heal to full functionality, so we know we are vulnerable. Too vulnerable.

The first instinct when things seem worse is to hope it is temporary, and it will go away. If there is a new symptom, I watch to see if it will resolve, or if I can find a workaround.

But I have never in the past worried that I should be extra-vigilant when in that state, if indeed it is a state – and not the permanent downward step I fear.

I have learned a new and painful lesson: I am able to get sick/sicker. I am not immune to catching other things if I’m already under strain. My immune system, compromised as it is, can fail even more.

And there are some nasty bugs out there – and they don’t care whose body they hitchhike on.

My brain came back this morning

Somewhat. A bit. But at least coherent in the way I am used to (so, closer to my ‘normal with CFS’).

And the first thing I’ve done is to write all this down, to record it for my own edification (and possibly yours).

The big fail – which I hope not to repeat – was husband assuming he had what I had, and not taking the normal precautions against spreading whatever he was fighting off; compounded by me not insisting. When he’s sick, he is not thinking of anything but being miserable (it doesn’t happen that often – lucky stiff).

He handed me things, coughed in my direction, left tissues everywhere.

But it’s all really my fault (it always is): I let him hand me things, picked up tissues from the floor and emptied wastebaskets, didn’t insist he take precautions (because mostly that’s the way we’ve always operated).

I am the one who is vulnerable – I am the one who is going to have to remember this lesson, and enforce best practices from now on: if someone is sick, stay away, wash hands frequently, insist they pick up their own debris, and do everything I can to protect myself.

Because I am the one who can’t write if she doesn’t.

Hope this saves someone else from worse. What say you?

How to fix post holiday blues

Bleak winter landscape with one tree. Text: Trouble starting a new year is normal, Alicia Butcher EhrhardtUNIQUE TO DO LIST ITEMS DRIVE ME CRAZY

It’s surprisingly hard to get back to some kind of routine after holidays and a year ending – so many one-of-a-kind items – from tax paperwork to getting parking stickers for the next term to all those doctor’s appointments which have been put off to seeing friends in town for only a few days.

I am ready for all that to be over, and get back to routine, any kind of routine. Even snow – which is predicted for this weekend.

I should be writing up a storm – instead of chasing down the meter reading on the solar panels.

Anyone else in the same slump?

PWCs (people with CFS) handle change very badly

We’re bad enough with things we do routinely, such as laying out today’s pills, and watering the plants.

But each new thing attempted requires the use of a scarce resource: good time (i.e., when the brain is on).

I normally reserve that time for writing, and have ‘FIGHT for the RIGHT to WRITE‘ where I can see it easily.

But this time of year – between the end of one and the slipping-into-routine beginning of the next year – is a constant barrage of exceptions.

EVERYTHING claws its way to the top of the priority list

We have a solar system. On the first of the month I get an email which reminds me to send in the meter reading so they can credit us with SRECs (solar credits – don’t ask me to stop and look up the acronym!) so that we will eventually get a small check for any excess energy we pour back into the grid. There was a $500 extra cost when we were required to pay for and install a new meter (the government wouldn’t take our reading of the old one) if we wanted it to wirelessly send the solar company the reading – and of course we said no thanks.

The idea is that, once a month on being reminded of the need to send this information, I will go down to the basement, read the meter, and, while down there, perform the cleaning of the system that involves pouring bleach into the pipes and the pump, which will otherwise grow algae.

Except that I’m now having to force myself to at least go down to the basement once a day, because moving is difficult, the heart rate goes up, and my chest hurts if I do stairs. And yes, I have an appointment to visit a cardiologist for reassurance/whatever already scheduled.

So it had to be done, now – and I cheated. I just got the number and emailed it in and didn’t do the maintenance part. Which means half of the task – and a trip to the basement out of no energy – is still pending.

I am probably not unique

Everyone has these things on their lists; everyone has more stuff to do at the end of the year and beginning of another.

But I’m drowning, my assistant hasn’t made it for a week (she’s sick, on top of the holidays), and there is no end in sight.

Why am I telling you any of this?

Because I normally blog – and I have 30-40 half done posts, none of which I seem to be able to finish.

Not being able to finish a blog post is new to me, and I’m scratching my head. I understand how writing doesn’t get done – I can’t focus if I know I’m going to be interrupted in 15 minutes – but I hadn’t realized how even blogging needs some coherence.

I’ve been worried about obvious mental deterioration, and then I realized this morning that I’m probably not unique, but I am getting older, and changes in habitation location are coming, as well as a whole slew of problems related to that, and that the world probably won’t come to an end if I don’t have my handicapped parking space set up before this Sunday (another task which took time this morning) but that it was wise of me to try calling on a working day (they assure me it’s in the works, but they were just off for eleven days).

I’m working on it

That’s my motto for everything.

I will get to it, whatever ‘it’ is. Eventually.

Routine will return.

I will be able to finish something (I’m almost ready to hit ‘post’).

And now I go to find the proposal from 2004 from the HVAC people that shows we paid for – and didn’t receive – a duct cleaning back then. Because I promised the lady I’d send it today. Because THEY shred their records older than ten years – and I never throw anything out.

Because $300 is not peanuts.

Oh, well.

Happy New Year to all of my bemused readers (bemused at this odd post, not bemused themselves).

Stay warm (or cool, if you’re in the southern hemisphere). Breathe. Pray for the crazy lady.

Peace out.

You, too?

 

Give a friend a book for Christmas

easy-xmas

LET’S SEND 2016 OUT IN STYLE

If you’ve always wanted to try Pride’s Children – now is the time.

If you’ve read Kary’s story, and wanted to recommend it – now is the time.

If you want to give it to a friend – now is the time.

If you’ve hesitated because it’s long, and you’re not sure, and it seemed too big a commitment – now is the time.

The latest reviews have been amazing

Sam Umek said,

The characters feel like real people that you meet everyday

…One reviewer complained about the length, but I found it too short. I am used to reading BIG books. Alicia has written a book that is spellbinding and you don’t want the story to end.

Pat Patterson, a self-identified ‘simple man, a Southern redneck,’ said,

This book was a feast, and I am quietly stepping into the line for the next one

…Kary is CLEARLY a hero, by any criteria you want to apply apart from armed combat, and she is the center of the book.

…I found myself turning page after page, and DEVOURING the words, licking my lips figuratively at how delicious they were, and thinking: SHE CAN’T KEEP THIS UP! There is no way she can continue to let me walk around and see and hear and feel what the characters are experiencing; except she did.

Indie freedom means I can do this when and if I want to

One of the big advantages to being a self-published author is that I can turn on a dime.

If I wake up one morning, check my sales and ads, and don’t think my marketing plan is working well for this book, I can change it – or I can ditch the whole thing RIGHT THIS MINUTE and do something else.

This means that the marketing – an entirely separate skill from writing – is a work in progress.

I don’t want to think about it too much for the rest of this – interesting? – year.

But if the price I chose for the ebook doesn’t work for some readers who might otherwise enjoy Pride’s Children: PURGATORY, I can find that out by playing around with the price point.

A Top Reviewer, I am told, said that Pride’s Children was the best 0.99 novel she’d ever read.

What do I want?

New authors want readers. And the beginning of word-of-mouth recommendations.

Of course we want fame and fortune, but realize that may take a while – and more books published.

We want readers waiting for the next book with bated breath.

We love reviews and sales and publicity and…

But most of all, we want to be read.

Because that encourages us to write more.

I’ve tried many things both ways: with positive reinforcement or with stubbornness. I’m sufficiently persistent to keep writing, with no regard for the outside world, but the encouraged way is far easier. I don’t like taking good time to write myself back into writing fiction; with my CFS brain, this happens far too often.

I want your most precious gift: your time. And I want you to feel it was well spent.

Comments make me happy.


Thanks to Stencil for holiday images and the ability to make quick images that look professional, to illustrate posts. If I needed more than a few images a month, I’d get the paid version in a flash.

Especially thanks to those who have written reviews since Pride’s Children came out – I am reliably informed it is doing quite well in that department (27 reviews, 24 of them positive!)

My morning walk through my Internet village

A pink-soled sneaker being tied onto a foot; Words: Every morning I take a walk and stop to say hi to all my Internet friendsSURFING? OR FREEDOM FOR PEOPLE WHO DON’T GET OUT MUCH?

What other people do so easily, would be impossible for me: I’m technically retired now, though the last 25 years of my working life were spent on disability, and I can’t just ‘go out for a walk’ like healthy people my age.

I’ve recently gotten to the place where I can walk more, but it isn’t easy or fast or convenient or unassisted, not like when I used to go out the front door, turn left (or right if I wanted to add an extra bit around the cul-de-sac), and just go, walk wherever I happened to decide, and come back when I’d had some exercise.

But I do something similar when I get on my computer in the mornings, and, while I’m waiting for the morning’s caffeine to decide if there are going to be working brain cells today, I walk around my Internet neighborhood – the sites on my navigation bar – and see what’s up.

Procrastinate first, except for the rare days when there’s something my limited brain can do in the writing department before it is warmed up. I’ve tried – nothing seems to work – so I’ve decided to enjoy my morning walk, do it as efficiently as possible, and not fret about the time wasted/spent. Angst is not helpful, so I don’t bother any more. And I almost never add any new stops to the navigation bar.

HOME COMPUTER: Email first – well Duh!

I check email several times a day, and make sure to deal with what I can asap, as friends write, and several newsletters show up with something new, and often a quick response saves much time and effort later.

Plus, as you can tell, I like to write back. Gets the brain moving and the fingers wiggling.

Sometimes I find responses I needed from missives I’ve sent out to friends or other sources, and know I’ll be able to move something forward.

Occasionally, I have to do something, such as go to the basement and read the numbers on the meter for the solar power system, near the first of the month. They can’t do their paperwork until they have my input, so it gets a high priority.

FIREFOX: First stop on the Internet are my own blogs

I refresh the page, and the thingy in the top right hand corner will tell me if I have visitors, and if they’ve commented. New comments on the blog always get first priority

First stop after 9AM – TPV; if much earlier, do this later

I stop by The Passive Voice for the morning publishing news (and several times more during the day because Passive Guy puts up five or six posts every day). It’s like a visit to a cafe where you get good commentary, and rude people aren’t tolerated. We mostly stay on topics related to publishing and books and such, but David has an interesting mind, and gets stuff from lots of places.

Extra points if posts have a comment at the bottom from our gracious, handsome, and intelligent host – his wry humor and delicate satire are things for joy.

People send him stuff. He is a good host, posting an excerpt – and a link to the original. He is careful not to ruin the original post, while giving you enough to decide if you’re going to visit it.

On most blogs, comments need supervision, and are often not worth the time to scan them; if you don’t read the comments on TPV – and subscribe so you get the late ones – you’re going to miss things. Useful things.

WU – ‘about the craft and business of fiction’

I stop by Writer Unboxed most mornings, at least to get a quick look at the topic and the post’s byline. I skip Flog a Pro – kind of hate the idea of people feeling they can freely trash work they couldn’t produce; mean-spirited and negative some times. Not me. Other bylines or topics I know I won’t respond to from the title or a bit of the post, I skip; otherwise, I read the post.

I consider whether there’s anything I’d like to add to the discussion (there’s usually a question or two at the end of the post as a prompt); I leave my little addition to world literature or my (usually different) take on the subject, read those of other people I recognize, and maybe pop back later; I like posters who bother to come back and join the discussion better, but not all of them have/take the time.

FB – for friends and support groups

You get out what you put in on FB. You are a contributing member of a community – or not. Since one group is a support groups for people I know have extremely limited energy, that group’s members get a pass – some can only afford to post when desperate, and we all respect that.

My group of friends is small, and I don’t sell or proselytize much – that’s not what friends are for. My blog posts automatically on my personal FB page; if there’s anything that the groups might find useful, I cross-post them on the group page. A little goes a long way.

I check out any friend requests – most are obvious spammers – easy to tell (and block permanently) if I take a peek at their page. I’ve even reached the point of checking with the ‘friends in common’ if a friend request is odd and unexpected in any way.

I have no author page – yet. It would be one more thing to maintain – maybe if it seems a good idea later.

CHROME: GR and my British friends

A daily stop, maybe several times, is a nice bunch of people on Goodreads in the UK Kindle group who have made me feel welcome. I’ve read enough British authors in my life to practically qualify on that alone. Occasionally there will be something in my inbox from a GR friend.

I usually save those for later response, but almost always read them right away.

The notifications function provides a quick way to keep track of the threads I comment on or read.

The comics – and Dear Abby

And I’ve had my bit of entertainment for the day; I have them set up for easy refreshing on the Chrome browser, and can update and read and pass on good ones to friends with a few minutes’ effort. Doesn’t that happen to you? A comic just makes you have to send it to a particular friend?

Extra points when the friend later emails back that it was especially appropriate or welcome.

The daily brain puzzles – measuring brain speed (if any)

Usually the last stop on my little trek, I set up a few hard sudokus, maybe do one or two, to gauge whether my brain is starting to work the way I need it to work for writing fiction.

I’m looking for a completion time below seven minutes; and I monitor, with a partial brain, how the math processing is going. I can literally feel it when I’m not tracking – I can still do them most of the time, but they feel like slogging through mud, and take forever. The CFS brain fog is clearly at work here; sometimes it won’t go away. I can work a bit, but it almost isn’t worth it without a brain. I’ll get ten minutes worth of writing done in three hours.

Yahoo news

If it makes it to Yahoo, I take a quick scan; other news items will show up in paper (The Economist and other magazines), or someone will boost them on FB, so this is really a desperate measure to find SOMETHING to read before I have to (want to/have to) get to work.

The end of the walk – home again, home again, higglety pen

After a final quick check of the emails, and possibly TPV depending on timing, and a superquick and usually pointless visit to Amazon’s pages that show book sales, I grit my metaphorical teeth and start up Freedom or Anti-Social to block the internet for my available writing time.

Then have chocolate protein shake, and take First Nap (sounds counterproductive, but isn’t – search for ‘mental dialysis’ posts), and when I wake up again and come back to the computer, the writing is sitting there ready to go, I’ve checked out that the whole world is okay until I have time to look again, and I don’t even think about all my friends for hours.

Turning into a routine makes it much more efficient than it used to be.

Keeps me sane.

And productive.

And connected – the most important part of all. My internet friends are REAL friends. I just maybe don’t really know how tall they are.


Thanks to Stencil for images I can create or edit.

Do you have a morning computer routine?

Hope in NIH research budget commitments for ME/CFS?

cross-start-line

OCCUPY M.E. FOLLOWS NIH RESEARCH ON CFS

This is a CFS blog as well as my writing blog. There are much better CFS bloggers, so I don’t do much with it here, but I read and follow developments, as we all wait for some kind of answer.

Jennie Spotila does a lot of things, and in particular, runs a blog called Occupy M.E., where she analyzes what the information actually says.

She’s been running a features for almost a year now, called ‘The NIH RFA Ticker.’ With it she examines every week how the NIH allocates research grant money. In her words in the initial post:

“RFA” stands for Request for Applications, and it is an announcement from NIH saying, basically, we will fund $X amount of research on Y topic. This is different from regular funding opportunities, because the money has been set aside. If enough meritorious grants are received, that money WILL be awarded. That’s different from tossing your application into the general pool and hoping it floats.

NIH last issued an RFA for CFS research in 2006, and we’ve been begging for another ever since.

The weekly update post

Every week she sees how much money has been allocate by RFA by the NIH, and every week since she started, the RFA money for ME/CFS research has been ZERO.

From the Nov. 7, 2016 post, the totals for fiscal year 2016 were:

352 RFAs issued, $2,840,680,617 committed to RFAs, and ZERO RFA money for ME/CFS. Yup. That’s over 2.8 BILLION dollars in your tax money and mine.

The latest update (Nov. 14, 2016) showed how much money is committed so far in FY 2017:

51 RFAs issued, $252,167,563 committed to RFAs, and ZERO RFA money for ME/CFS.

We’ve been promised research, and attention, and money for about thirty years now. MOre recently, with activists holding protests, the promises have been made that they’re going to figure out what’s wrong with us.

Jennie just posts, every week, that actions speak louder than words, and, so far, the actions tell us we don’t count, and there is no one interested in studying us (they have to apply for those research grants), and we should stop bothering them because they’re trying.

I dunno. Jennie posts the numbers. I am giving them a tiny bit more visibility here. I visit Occupy M.E. for the weekly update. She is very polite – these are public numbers. She is much more polite than I am.

And every week I’m outraged.

I don’t know where she finds the energy. I can only shudder at how disabled people with unappealing disease and conditions will be treated these next few years.

You might click through and leave her some encouragement; it has been a lonely haul for so long, it would be nice to see that number, that ZERO, actually change. Even then, it will be a beginning, not an answer, to fund research. But to start a marathon, you have to cross the line.

Application to fiction

After all, this is my writing blog, too.

When I started Pride’s Children, and gave Kary this disease as something to deal with, I was afraid that the disease conundrum would be solved – and the story rendered moot – before I finished it. It would still be a story worth telling, set as it is in 2005, but the edge, the urgency, would be lost if the reader knew that CFS, like, say, AIDS, had been solved. Historic, but not critical.

I needn’t have worried. It may take me years to finish the remaining two books in the trilogy – but we don’t even have a start in this one important area of funding. NIH funding. Government research money spent for the needs of citizens who would love to be productive again, and would settle for not feeling quite as sick. I’ll probably win this race.

Pray for us. But also be outraged with us.

Comments make for happiness and the feeling of being heard.