Tag Archives: Hard choices

Celebrate May 12 International ME/CFS AWARENESS Day

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

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

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

But we never live only for ourselves

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

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

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

If not THE best.

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

After she FINISHED, one of my reviewers said,

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

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

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

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

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

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

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

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

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

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

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

But be aware it may change you.


I’d love to hear what you do.


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

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.

Side Effects: the dark side of medicines

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

THE HYPERSENSITIVE PATIENT REACTS WRONG TO DRUGS

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

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

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

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

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

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

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

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

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

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

Tough cookies.

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

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

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

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

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

Not a good system.

Better than none at all?

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

What if you KNOW you are not that patient?

Good luck.

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

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

They have the WRONG information on you

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

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

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

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

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

How is all this relevant right now?

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

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

EFFIENT. Prescription brand of prasugrel.

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

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

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

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

I determined never to eat anything again.

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

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

I did NOT take the Effient dose on Sunday night.

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

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

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

Monday morning quarterbacking

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

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

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

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

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

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

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

For now:

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

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

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

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

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

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

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

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

Am I still grateful to be alive?

Is our beloved Pope Francis Catholic?

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

What do I really want?

To not be on ANYTHING.

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

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

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

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

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

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


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

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


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

Quality independent literary writing must be nourished

Butterfly on cactus flower. Text: Beauty and quality are fragile. It takes effort to encourage them. Alicia Butcher EhrhardtWANT INDIE STORIES OF GREAT QUALITY TO READ?

Author Jay Lemming, who writes indie literary fiction (among many other things, including a good blog), has taken the lead in finding out how readers of well-written fiction – often categorized as literary fiction online – find their next book, and he’s created a survey for those readers.

Thank goodness for Jay, because this is exactly the kind of thing my energy doesn’t stretch to encompass.

Here’s the beginning of his latest post, making the survey available to readers:

Well, it’s finally here: the 2017 survey for readers of independently published literary fiction.

Click here to participate.

But before you do, you may want to read on for another moment…..

The market for independently published fiction has expanded for several genres: romance, sci-fi, fantasy, horror and all sub-genres therein.

But the market for independently published works of literary fiction has lagged due to the more conservative aspect of its readers…

CLICK HERE to go to Jay’s blog and read about the survey first – it will make great sense that way. Then please take the survey – there is a group of literary indie writers who will be able to use this information, results of which will not be restricted.

Jay will write about the results when the survey is complete; you should bookmark his blog or follow to get these results when they’re available.

Everyone complains that X% of indie work is cr*p – Jay is doing something about that, as are the writers who take the time and make the extra effort.

PLEASE NOTE: there is an amazing amount and variety of indie genre fiction

And plenty of quality work there to read as well – most people can find what they like, and the better writers in their favorite genres.

Literary has become the equivalent of ‘not-genre.’

However, this particular survey is for those who want what we have labeled as ‘literary’ on sites such as Amazon, because ‘mainstream,’ ‘commercial,’ and even ‘big book’ have disappeared as categories, leaving everything not specifically genre as ‘literary.’

The big publishers still have a stranglehold on some of this work – many of their authors (I know several) work very hard, but never see much remuneration except ‘prestige.’ Sometimes that’s because literary work is required for tenure or to maintain employment in an English, Literature, or Creative Writing program.

If indie literary work becomes popular, these authors will take the plunge into indie (as some have done already), and be able to pay for such frills as mortgages and college tuition for their kids.

And some of us, ahem, have started as indies/self-publishers, and have no intention of crawling off to submit our work to agents and traditional publishers big/medium/academic/small.

But if quality writing isn’t rewarded, readers won’t be able to find it.

Go help Jay. Take a few minutes and fill out his survey.


Support indie work in general – don’t forget the Wishing Shelf Awards and the lists of finalists. Children’s books by age groups first, followed by adult fiction and adult non-fiction (scroll down). Look for Pride’s Children – but there are not links to Amazon and other retailers on the Finalists list because it would be too unwieldy; PC is on Amazon here.


My continuing thanks to Stencil for making it easy to create graphics for these posts with a few mouse clicks.


 

Heart Sisters is an amazing blog

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

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

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

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

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

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

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

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.

Chest pain from striated versus smooth muscles

self-diagnosis

DEALING WITH PERSISTENT PAIN EXPECTED TO BE TEMPORARY

*** NOT medical advice. I’m not that kind of doctor. ***

Having abandoned the hospital last Tuesday with a relatively clean cardiac bill of health, and after the cardiologist visit on Wednesday, I noticed the pain hadn’t stopped. Not discomfort; PAIN.

(By the way, the cardiologists lose all interest in you at that point.)

It was a bit smaller due to relief – but that was all.

On Thursday, sensing it would finally work, I made the effort to voluntarily NOT cough when my body wanted to. That’s a trip, by the way: you have to catch it and distract it.

But it wasn’t enough. I was still setting off the kick-in-the-chest-by-a-mule feeling when I would do such small physical tasks as walk to the bathroom, go down 7 steps to the living room, and, the worst, coming UP those 7 steps and having to walk down the hall and across my tiny office to my desk chair, where I would sit, and grit my teeth until the pain started subsiding.

If I had not already done that, I probably would have made that hospital ER trip.

Why didn’t you go to yet another (or one of the same) doctor, Alicia?

Because I decided, if I knew I probably wasn’t going to die yet, that the whole experience had completely wiped out any chance I had of getting better without some serious rest time.

Internet lookup of possible sources of chest pain

Surprisingly not, it was hard to find the information online about non-cardiac causes. Because of course you push ‘get checked out by your doctor’ and ‘go to the ER’ as solutions, if you don’t want to have your patients’ families sue you.

Have you noticed how all sites that start with ‘Non-surgical ways to…’ quickly end up with dismissing those ways and heading for, ‘If you have to have surgery…’?

In the end I found NOT ONE SITE stating that coughing could CAUSE pain elsewhere that wouldn’t necessarily go away by itself.

And none of the sites talked about HOW long-term coughing might trigger TEMPORARY chest pain – I ended up deciding that one strictly on my own. Since it happened to me, I’ve decided it IS possible to cough so much that your chest gets supersensitive, and any little thing can then set it off.

Ibuprofen, which I now allowed myself, helped a bit – but not for long – and didn’t remove the crushing/tense feeling that minor exertion set off.

Some of the sites that talked about non-cardiac chest pain had a list of other serious things that it could be (with the ‘temporary’ part not discussed).

  • Some of them were pulmonary – things like pleurisy or pneumonia.
  • A bunch were gastrointestinal – having to do with spasms of just about anything from one digestive end of you to the other.
  • A very small number were musculoskeletal (specifically talking about the intercostal – between-ribs – muscles that help you get air in and out), and mostly seemed limited to sharp pains that might have been brought on by sudden muscular exertion.
  • And no one mentioned the specific area that seemed to be aching, the outer chest wall pectoral muscles.

Using the old noggin – a dangerous thing with mine

Assuming I’m not dying from something else wasn’t hard: I convinced myself the mule-kicks were induced by coughing, and would eventually go away if not continuously triggered.

So I decided to see if I could fix the phantom mule with things on hand in a regular household like ours, and figure out what it was. I also promised the husband I’d see my doctor again if the pain persisted despite my best efforts.

I decided, from the region affected, that the three candidates were:

  1. esophageal spasms
  2. pectoral muscle spasms
  3. intercostal muscle spasms

Tools on hand:

Last summer, I pulled my usual ‘I don’t want to go to the doctor’ routine when I’d had a bout of waxing and waning spasms of the GI tract, until, 8 days in, and 4 later than I would have taken anyone else, I went to Urgent Care and complained. I’d never had that intensity of pain before, and I was hoping it would go away before I had to have my insides subject to scoping – which would involve doctor visits, labs, tests, all things which are 1) exhausting, and 2) suck up my so-limited writing time because I have to leave the house.

When I finally went to UC, the doctor prescribed an anti-spasmodic called dicyclomine, and within a day or two my innards had stopped punishing me for eating, and drinking water. Much better. I stored the remainder, thinking it was a nifty thing to have with you on a vacation just in case.

Also, from a previous doctor I had Skelaxin, a muscle relaxant – said doctor saying I could take up to three a day. I had found that I could barely tolerate 1/3 of a pill, very occasionally, and it would knock me out. I’m a bit sensitive to medicines, which is why I try not to take them! But I have a couple of bottles of the stuff left, which will probably last until I’m in a nursing home, non compos mentis.

Plus over the counter cough suppressant, and the nice cough syrup with codeine which is the only thing that really suppresses a cough – and wipes me out.

What to use – and why?

I figured out the important thing depended on a fact I learned in Anatomy in 1968: that we have two kinds of muscle fibers:

  • striated muscles – heart, skeletal muscles, with the heart muscles being INVOLUNTARY
  • smooth muscles – lining your gastrointestinal tract (also blood vessels?)

The difference is that the striated ones can be affected by a muscle relaxant, and the smooth ones need the anti-spasmodic anticholinergic meds.

Using the muscle relaxant had helped a bit with Mr. Mule, but once I found the dicyclomine, and took some, I’m finding that the same medicine which the UC doc prescribed for acute abdominal cramps seems to be helping with spasms in the chest region. Same system: GI.

Conclusions

Which brings me to the conclusion that the pain probably comes from an esophageal spasm – a scary thing to consider if it were persisting or getting worse – but taking a few doses of the anti-spasmodic dicyclomine seems to be bringing the severity and duration of the pain attacks down to bearable.

Where we will keep them until they stop happening.

7 steps now trigger a much smaller animal kick; a jackrabbit, maybe.

I’m still having to control coughing attempts voluntarily, but I can do that, and the severity of that is also going down, so a week after this stuff sent me on an ambulance adventure, I am in a state of less pain, I plan to continue to avoid the doctors, and maybe I can get enough rest to get back to not leaving the house so I can write.

I’m so glad I took anatomy.

I’m not a medical doctor, so don’t do what I do.

But if you do, tell me what you figured out about your body.

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.

Write memories down or risk losing them

Autumn tree and bush. Text: What's on your trip down memory lane? Alicia Butcher EhrhardtTIME PASSES SO FAST – AND YOU CAN’T GO BACK TO TAKE PICTURES

This was in my potential blog posts, dated March 23, 2016 at 1:10 PM – and I had forgotten most of it:

“While I was napping, I was overcome with memories – memories which I am terrified of losing from my head, memories I haven’t shared or saved or written down, memories that will come from the detritus of making ourselves small to move to a CCRC*, and which I have no time to save right now.

“Memories which might be read to me in the nursing home so they would spark real memories.

“It is a huge project, even writing down what I do remember, and asking those people who still remember some of the pieces to tell me those pieces.

“The present could take so much time in locking down those memories, time I won’t have while I can still DO some things, still create a few more.

“Today I went out for daffodils, brought some in, and wonder if I took energy I don’t have – or released some restlessness that needed a place.

“And here I am writing – that takes more time.

“MY memories. For me. For our kids. But mostly for me, though I want to give them theirs – and Gary is NOT getting back to me with the digitized videotapes**.

“And I don’t have time this week anyway.

“One more thing for the To Do list.

“I could at least start, ‘An annotated Life,’ as a Scrivener project. DONE”

What you don’t write down may disappear

*A CCRC is a Continuing Care Retirement Community – and we’re planning to move to one as soon as our last chick is settled. I need the pool and gym facilities, and we need to be free of the not-fun-anymore chores of taking care of a house and yard and having to drive around for the doctor appointments.

They are not for everyone – and they are sort of permanent, so we will choose carefully.

My main concern will be quiet, and congenial people to do things with. After this last election cycle, we will be VERY careful in picking the state as well as the people.

There is something like a 50% chance of developing dementia if you live to 85, which is a sobering thought for a couple.

I’ve seen amazing things done for people with memory problems, which include photos, music, and other memory triggers. But you have to pick a place which will do that.

Before they get any older

**Even though it was a lot of work, and I was always exhausted, I took the darned camcorder everywhere, forced people to smile for the camera or the recorder.

But I never had energy for the next part: moving those precious memories to newer storage methods, making copies, annotating the contents beyond the label on the spine of the tape cassette.

By the time I really started panicking, 30 years had passed, and I had at least 18 tapes in everything from Beta to Super Hi8 (no digital!). Through Thumbtack, after posting a project, I found a person not too far away who seemed to understand what I wanted, and could do it: digitize those memories onto a state of the art hard drive.

Gary, of Films-4-good, did a wonderful job, but he had to fix our camcorder and find a beta machine (because the ones we thought we’d preserved were dead), so it took a while – and I felt the pressure of having those carefully saved memories out of my house.

They are safe now. We have five copies on five hard drives, so each kid has one – and therefore it is offsite storage. Phew! Annotation may take a while – even watching them will take a while – but the main part of the chore is done, and the relief is enormous.

Gary also processed the Butcher family movies, narrated by my Dad who is no longer with us, so I have digitized home movies and footage from the turn of the century. The TWENTIETH century – and the time of Mexican dictator Don Porfirio Diaz, with scenes from Mexico City back then, and my great-grandfather Nicolás García Colín and my great-grandmother Rosario.


Don’t delay – and keep updating.


***Pride’s Children is on sale at Amazon for the ridiculous price of 0.99 until Jan. 30.***


Did you take the pictures?

Writers censorship by insiders still censorship

A page of roses. Text: Artistic integrity is for the writer to decide. The road to hell is paved... Alicia Butcher EhrhardtACTIVISTS TELL ARTISTS TO BE POLITICALLY CORRECT?

I received an email today from someone in my own community which reads:

Alicia,

Please, please, PLEASE change the name from CFS to ME.  I have just watched [X]’s TED talk, and that only reinforces how important it is not to continue using this dreadful name. We must NOT add to the wrongness of all that is wrong or not happening with this disease.

[X] might well be putting ME on the mainstream map. …

Thank you, [NW – name withheld]

And it raised my gorge, for reasons I will now explain.

A little background would set this in context

I started Pride’s Children at the turn of this century, set it a few years later into the time period 2005-2006, and locked it down in my memory to keep the details accurate.

It took me a long time to write, a long time to get it right, and a fair amount of time to publish.

Promotion is not my thing, but I’m womanfully shouldering the task, which used to be a purely indie/self-publishing task, but has now become a task most writers, traditionally- or self-published must undertake (or risk selling no books – traditional publishers only market those books expected to be big sellers or for writers in their top 1-2% – everyone else gets bupkis in promotion).

SINCE publication, a bit over a year now, among other efforts, I have asked a lot of CFS people to read, and possibly make a mention of Pride’s Children on their blogs or sites – and haven’t even had the courtesy of a reply.

I shrug – figure they have more important things to do with their time.

My own Facebook ME/CFS community has been far more supportive, and people there have made a huge effort to read (even when they rarely read books any more, and even more rarely something of PC’s length (167K words for the first volume in a trilogy) and complexity. And several have given me the incredible additional gift of a review – and I know how much it costs me/them.

I’ve asked other people connected to the ME/CFS community to publicize, read, review – again, no interest.

Fiction breaks down walls

I emphasize that fiction is one of the prime ways (cf. Uncle Tom’s Cabin, Black Beauty, To Kill a Mockingbird… in novels; movies such as The Philadelphia Story with Tom Hanks) there is to get through the barriers people put up against involvement around their hearts and minds.

I understand; the world used to have a disease of the week, and now it is more like the disease/charity/cause of the second on the internet, TV, and the mails. ‘Compassion fatigue’ is real.

I think I’ve written well; some readers tell me so.

And you’ve heard endlessly my statement that

the more there is a message in the fiction, the better the entertainment value must be

because people don’t like being preached to. Have an important message? Don’t tell people – let them find out for themselves through your characters.

So why did this email bother me so much that I’m blogging about it?

  1. Historical context: for a disease that has been called yuppie flu, CFIDS (chronic fatigue and immune dysfunction syndrome), SEID (recently – something to do with our post-exercise exhaustion), ME (for myalgic encephalomyelitis or encephalomyopathy), and others that didn’t stick very long, it is disingenuous to decide that ‘ME’ (with the first description- one I don’t understand because I always though myelitis was an inflammation the covering on the outside of nerve fibers (Google: infection or the inflammation of the white matter or gray matter of the spinal cord), and I don’t even remember what ‘myalgic’ means (Google: muscle pain). In any case, ME always has to be explained.
  2. Everyone’s CFS is different, though there is a core of symptoms (like a Chinese menu – so many from Column A, so many from Column B). I was diagnosed with CFS in 1989, and nobody did anything then or since to see whether there’s inflammation somewhere on my spinal cord (nor would I let them – the symptoms are bad enough).
  3. There is no approved designation worldwide – the European ME people say we US people with CFS don’t have the same disease, for example.
  4. There are no approved tests – up until now, and especially in 1989 and 2005, the diagnosis was made BY EXCLUSION of everything else they could think of that gave you the same symptoms. We’re hoping for research that will nail down a cause, and possibly give hope for treatment, at least for those who are more recent victims, or possibly not full of co-morbidities after all these years.
  5. Insurance companies and the CDC and the NIH change their designations all the time, for reasons which they always claim are ‘the best.’ I’ve seen a lot of these in 27 years, and few have stuck, and each one claims to be the one which will put us on the map (and wastes a lot of money on talk, administration, and stationary each time).

Another name change could come along tomorrow – and I hope it will when they figure out the cause – some exotic virus or virus fragment or new quasibiological entity – which will give the whole thing the correct context (cf. HIV). CFS is as good as any of these other designations – and has the advantage of being far better known (and not pronounced ‘me’ as in ‘I have me.’)

But of course the most important part is that I choose what I write

And was careful to make some of the above distinctions (ones which would be known in the time period the book was set in), before using CFS consistently in the rest of Pride’s Children, BECAUSE THAT’S WHAT WE USED BACK THEN.

And I guided the reader in and out of those distinctions with care and deliberateness to emphasize the (at that time and still now) UNKNOWN quality of this illness.

If you own a copy, it’s in Pride’s Children, Chapter 2, where Kary explains it to Dana. If you don’t own a copy, the Look Inside feature on the book’s Amazon page includes that chapter in the sample.

C’mon, wouldn’t it be an easy change, and shouldn’t I play ball?

In addition, the email sender shows a cluelessness about how a book is written, published in ebook and in print that tells me blithely to put in hours, days, weeks to change something – because X gave a TED talk.

Good for X (who belongs to one of the organizations I’ve gotten no response from – an organization within a few miles of me, by their address). This is X’s mission – along with more advocacy that I am very grateful for – and which I cannot do. X has put a life on hold (no choice in the matter because, well, of CFS. ME/CFS. ME.) and chosen to use connections I can’t do anything but drool over. I am happy for X.

And one of X’s project, which may make X famous (15 min.? hope not), had a very catchy and expressive name, which was JUST CHANGED to something entirely different I don’t like!

But I spent FIFTEEN years writing the first third (and outlining the rest) of what I consider a major novel with a CFS main character, before any of this other stuff happened (X has been sick for five years, and was in elementary school when I started this project).

I started serializing the final polished novel in 2012 – when X’s project was not even begun.

And there is no way in hell I’m going to make a change to my published story to accommodate anyone, just because they may end up being (probably will – those connections I mentioned – and a HUGE amount of effort) much more famous than I am.

I guess that covers it:

  • it was inappropriate to ask me to change MY book
  • it couldn’t be done, even if I wanted to, without an enormous effort on my sole part
  • and where were you, NW (name withheld) when I asked – I couldn’t even get you to read
  • I don’t think, personally, that CFS is all that dreadful a name; the name recognition, you see

It isn’t ignorance; the person (NW) who wrote has known me and my book’s existence for FAR longer than those five years I mentioned.

Thanks for listening. It is good to get these things written down – and out of my mind, where they tend to fester.

I will happily listen to opinions civilly offered.

How to live with other people and still stay sane

not-entitledTHANKSGIVING IS A SEASON, NOT A DAY

Every day I suffer silently through a ton of tiny insults:

my special cleaning tool left out instead of put in its place,
ice cubes used and not replaced,
a mess in the sink,
a surface which I cleared and cleaned mysteriously being full of ‘stuff’ again,

The list is endless. I wouldn’t, I don’t do those things to other people, and yet they do them to me.

And, like my Mother, who one day realized – and told me – that my Father leaving the cap off the toothpaste yet once more meant that he was still alive and with her, I know, and savor, this as the very small price of having other people in my life.

And I’m tearfully grateful.

The upstairs bathroom is once again clean all the time, and the carpeting vacuumed in the attic bedroom, and the bed made – and I miss our last chick every day, because it can only be that way when there is no one living in that space.

When I am no longer cleaning bits of hay out of random places in the house where our chinchilla Gizzy is allowed to roam for a bit of time in the evenings (she likes to run, and loves stairs), for whatever reason she won’t be with me any more.

I don’t know what it is they find especially annoying about me. The husband is a saint and actually looks confused when I ask him. The children have learned mom is opinionated and has relatively little trouble expressing herself, nicely, of course. The chinchilla, well, I provide food and special treats, and she consents to occasionally giving me her paw on command.

Those tiny insults? Bring them on. Writing them down? It’s one of the ways I store the memories.

And the ice cubes? At least there are still ways I can serve.


Thanks for the ability to make images, Stencil!

If you had only one year, what would you write?

gratitudeA THANKSGIVING REFLECTION

Today is turkey day for many people, including my huge and wonderful extended family in Mexico City, Detroit, and all over the western world. I am so grateful for them. I wish I were with them.

I am grateful for friends.

For self-publishing. Even for Amazon.

I realize how grateful I am for the ability to write, however slowly, but I’ve been feeling lately it is slipping away.

Part of that is the normal losses of life: the last chick has left the nest (we hope, for her sake and happiness, for good). I am in the middle of a huge effort to downsize. And another huge effort to walk properly again. Both these efforts take a lot of energy – and the energy has to come from somewhere.

A big part is chronic illness; it demands more than anyone can afford.

But part is also aging, and the thought that if I slow down much more, I will be at a standstill.

Time is finite – will you be happy what you do with yours?

So this morning I asked myself the title question: If you only had one more year to be a writer, what would you choose to be your legacy?

Many writers have had this question thrust on them. Some have quit writing – they’ve said what they want to say, and the work is getting onerous.

Others, like Sir Terry and Iris Murdoch, were taken from us by the disease no one seems to be able to fix except in mice – Alzheimer’s Disease. I hope AD also removed from them the pain of knowing they were losing it, because it is the most awful feeling.

But still others – and I hope to be in this group – use this question to focus, to re-prioritize and re-aim their writing, and to ask themselves if they really are doing everything they can – and whether the work is important enough to warrant the expenditure of so many chits.

I have a very short professional list:

I have to finish Pride’s Children: NETHERWORLD, and Book 3, tentatively subtitled LIMBO & PARADISE. Or maybe just PARADISE. And get them both published on Amazon.

I want to put the prequel short story, Too Late, up on Amazon.

I want them read, and I hope they will have an effect on people who consider the disabled ‘other,’ and not worth considering – or reading about.

I think I can accomplish those things IF I focus. Tempus fugit.

It is nice to consider that I have all the time in the world. But nobody ever really does. Life can strike the writer at any age.

Note that I’m also asking this question of people who don’t consider themselves writers – is there someone you should write to, or something you could write, need to write? That letter to your children? The one where you tell someone how much they’ve really meant to you?

What’s on your list?

There is always a new writing fear

A single red leaf on a concrete background. Words: Fear of failing. When you have something to lose. Alicia Butcher EhrhardtFEAR OF LOSING WHAT YOU HAVE IS PARALYZING

One of fear’s main jobs is keeping us safe: safe from falling, safe from making mistakes – from failing.

But, as many things, it is a more useful servant than it is a master.

I visited WriterUnboxed.com this morning, as I do most mornings, to get my brain in gear, give it time to focus, possibly preload it with something creative.

And I run smack into a blog post by Annie Neugebauer in which she talks about how to overcome the fear of making a mistake.

And not just any mistake, but the fear of falling flat on your face when taking a risk in your writing.

It is possible to miss the source of your fears

I left the following comment:

I have found that what scares you to write doesn’t often get the scary reaction – it’s more likely to be ignored, after all that courage it took to face the fear. In either case, though, you’re absolutely right: taking the dive feels good.

I’m doing that right now, diving into the fears I deliberately planted in the middle book of a trilogy – from the very beginning. I have spent years asking myself if I really had to go this route. The answer is that I do – there’s no way around it, and there’s never been a way around it.

If no one else in the world likes it or thinks it’s essential, oh well.

But now that a small number of readers have said they’re waiting for the second book, and the first one is slow, I just realized that I have been afraid of disappointing those readers! Who didn’t even exist when I started the first book.

What a concept: being able to disappoint readers.

Understand this first: the whole of what will be the Pride’s Children trilogy was meant to be, was planned out to be, a single book.

Due to my plotting with Dramatica, when the story got too long in the telling, the breakpoints to split it up were obvious (one of the great pleasures of plotting thusly), and it took very little to separate the pieces out into three volumes instead of one.

Writing Pride’s Children: NETHERWORLD has not been automatic

I expected it to be easy; after all, I was just going to the next scene in a long list of scenes, and thought I would merely be doing what I always do: gather what I have assigned to the scene in Dramatica, Save the Cat, The Key…Power of Myth, The Fire in Fiction – my go-to books while writing; structure everything into a scene that ‘happens’ in time, instead of a collection of bullet points; become the character – and write.

And I’ve been baffled by how hard it’s been.

I even started a post (in draft) about how hard the first scene was to write (short version: a new kind of scene required some new thinking).

But it wasn’t until this morning, after Annie’s questions:

What scary drop have you been avoiding?

and

And are you willing to accept any bruises or ego dents that may come?

that I realize what was going on: a brand new kind of fear, one I’d been vaguely aware of, but hadn’t fully engaged with.

I may get reassurances on this one, of the “I’ll like anything you write” or “Whatever you’re planning can’t be that bad,” from my friends who really believe that, and have taken risks of their own.

Facing reality may not change it

But those reactions are promises made to a future which doesn’t exist yet. When making the comment – and encouraging writers to take the risks – readers and other writers don’t know what they’re endorsing: they are writing a blank check.

If I blithely accept the recommendation to keep going – it could still turn out to be something my readers hate.

All I can say at this point is that it is built into the story from the beginning, and if you liked PURGATORY, you have already bought into the foreshadowed premise, whether you know it yet or not.

If you don’t like it, remember it was a choice made with full realization that it is dangerous – and that I tried my darndest to make sure it was the best choice. The only choice I have is to write it as well as I can – and to be as accurate as I can be to the mind of the character I’m writing in.

I am trying to sneak it past the reader, which, paradoxically, may require mentioning it early, and then being almost too subtle.

You just gotta trust the writer

I remember being delighted by a comment in a review:

I honestly don’t know how to explain the grip this book had on me from the first. I couldn’t stop reading it, and I wanted it never to end. I’ve read other books that affected me this way, but the authors always hurt the spell by tossing a plot bomb in through the window. Ehrhardt may do that before the trilogy is over, I can’t see the future, but she doesn’t do it in this book.

That’s, of course, one of the readers I don’t want to disappoint, who were kind enough to say I knew how to finish a book.

Maybe, when it’s all finished, I will describe why it must be the way it is.

I hope it will gain more readers than it loses me. If not, I am still writing this trilogy for me.

As a reader, what do you do when the ending of a book doesn’t satisfy you?

As a writer, have you come to this place?

Comments are most welcome.


Thanks to Stencil for the ability to create ten images a month – for free. If I ever need more, I will be using them.

Also, thanks to Blasty for helping me try to remove unauthorized downloads of Pride’s Children from Google search results. They are looking for more free beta readers to help them finish figuring out their methods. They have removed over 2000 infringements already for me. I mind, because I don’t want my work enticing readers to phishing sites. If you want to read for free, ask for an electronic Review Copy and consider writing a review.