Tag Archives: brain fog

Depression: unavoidable consequence of life-altering surgery?

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

THERE IS SUCH A THING AS TOO MUCH LOSS

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

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

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

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

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

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

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

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

How do you handle depression?

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

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

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

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

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

But it has the advantages of:

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

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

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

Back to the life-altering part

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

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

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

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

It helps to focus you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is such a thing as too much loss.

I’m perilously close to that point.

Comments?

Adult drugs mess with your mind

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

NAVEL-GAZING CAN SAVE LIFE OR SANITY

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


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

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

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

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

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

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

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

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

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

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

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

And wondered why I was still a zombie

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

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

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

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

My solution: don’t take that crap

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

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

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

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

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

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

From my journal:

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

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

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

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

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

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

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

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

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

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

Talk about trepidation!

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

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

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

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

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

The day went along, the best day in ages

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

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

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

I had obviously made the right decision.

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

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

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

You see where this is going, right?

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

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

And the blood pressure spike HITS.

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

I take the emergency BP med (amlodipine).

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

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

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

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

So, what did you DO, Alicia Guadalupe?

Nothing.

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

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

I told him the whole stupid story.

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

He was calm, calmer than I would have been.

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

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

What do I do now?

Play by ear again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m thinking about it.

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

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

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

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

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

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

And there you have it.

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

Medical research and you – reading the literature

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

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

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

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

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

That does NOT mean I lose all choices.

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

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

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

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

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

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

I HAVE DODGED A NUMBER OF BULLETS

I will be terrified for a while.

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

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

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

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

The whole subject is incredibly boring.

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

As part of a community, I value my online friends

Enormously. Probably more than most people.

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

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

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

I OWE EVERYONE MORE. REALLY.

THE SHORT(EST) version

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Some aftermath, still iffy

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

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

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

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

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

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

The followup cardiologist visit – too soon?

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

So what next?

Anyone who cares is now up to date.

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

What do I want?

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

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

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


I WANT ALL OF YOU TO LISTEN TO THE LESSON:

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

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


I’m wiped and going to try Next Nap.

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

Chest pain is not always heart-related

chest-pain

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

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

Get that through your head.

Before you read what follows. And remember it.

The Perfect Storm

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

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

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

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

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

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

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

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

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

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

And then, that night, the first trigger?

Triggers for chest pain

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

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

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

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

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

I hung up after those words.

On the cusp here.

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

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

And then it happened: decision time

An unbelievable wave of pain hits me in the chest.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No, the drugs don’t lower cholesterol.

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

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

The end? The summary? The conclusions?

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

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

Sometimes there’s a reason you can’t write

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

COUNTING ON YOUR IMMUNE SYSTEM?

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

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

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

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

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

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

The past ten years have been mostly on an even keel

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

I got cocky.

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

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

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

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

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

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

What went wrong/wronger?

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

It should have been enough.

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

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

The fear of further deterioration

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

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

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

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

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

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

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

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

My brain came back this morning

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

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

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

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

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

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

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

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

How to fix post holiday blues

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

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

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

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

Anyone else in the same slump?

PWCs (people with CFS) handle change very badly

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

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

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

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

EVERYTHING claws its way to the top of the priority list

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

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

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

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

I am probably not unique

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

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

Why am I telling you any of this?

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

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

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

I’m working on it

That’s my motto for everything.

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

Routine will return.

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

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

Because $300 is not peanuts.

Oh, well.

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

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

Peace out.

You, too?

 

Give a friend a book for Christmas

easy-xmas

LET’S SEND 2016 OUT IN STYLE

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

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

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

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

The latest reviews have been amazing

Sam Umek said,

The characters feel like real people that you meet everyday

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

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

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

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

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

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

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

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

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

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

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

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

What do I want?

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

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

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

We love reviews and sales and publicity and…

But most of all, we want to be read.

Because that encourages us to write more.

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

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

Comments make me happy.


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

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

My morning walk through my Internet village

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

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

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

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

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

HOME COMPUTER: Email first – well Duh!

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

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

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

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

FIREFOX: First stop on the Internet are my own blogs

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

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

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

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

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

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

WU – ‘about the craft and business of fiction’

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

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

FB – for friends and support groups

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

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

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

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

CHROME: GR and my British friends

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

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

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

The comics – and Dear Abby

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

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

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

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

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

Yahoo news

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

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

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

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

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

Keeps me sane.

And productive.

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


Thanks to Stencil for images I can create or edit.

Do you have a morning computer routine?

Hope in NIH research budget commitments for ME/CFS?

cross-start-line

OCCUPY M.E. FOLLOWS NIH RESEARCH ON CFS

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

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

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

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

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

The weekly update post

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

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

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

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

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

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

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

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

And every week I’m outraged.

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

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

Application to fiction

After all, this is my writing blog, too.

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

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

Pray for us. But also be outraged with us.

Comments make for happiness and the feeling of being heard.

The curious incident of the train in the nighttime

Picture of dog. Words: No. You can't. Alicia Butcher Ehrhardt

WARNING: DETAILED ANALYSIS OF A FAILURE. MAY BE BORING.

It is my nature to analyze ‘what happened,’ especially with the physical and mental details of what it is to live – and try to write – with ME/CFS, and the only way I have of remembering for sure is to write them down.

I share – because there may be useful information there for others, with or without CFS.

The beginning: when I could have and should have made a small decision

We’re sitting watching TV (the second part of Luther, Season 4), and it is exciting, as TV shows go. This is relevant.

The text comes from child in NYC at 9:49 PM: “I’m getting in at 11:08.”

I text back: “Will pick you up at 11:08.”

This is our system: if I don’t confirm with the correct time, we’re not good yet, because I’ve gotten it wrong before. And she had to wait at the train station.

It’s a good system. I know when she’s getting in, she know I know, and we both have it in writing.

I don’t have to remember.

The MY problem starts

But note: at 9:49 she is already ON the train. And I have one hour and 19 minutes before someone has to be at the train station to pick her up.

It’s still good – and she doesn’t know what train she’ll be on unless she’s either on it, or is close, and knows she has enough time.

There’s always another train (until 2 AM? sometime, and then they start up again a few hours later) from NY to NJ.

At worst, she’ll spend an uncomfortable few hours sitting in the train station.

I mention the arrival time to husband sitting next to me.

He says (and this is the crucial bit), “I’ll pick her up.”

The next bits are on me, and are why I’m writing.

I said, “If I have to get her, I need to take a nap before.” See? I know my limits.

He says, “I’ll go.”

The problem sticks up a finger to the wind

We watch the rest of the program, another twenty minutes or so, chat about the ending.

I see what I should have suspected, given how the last couple of days have gone: he is falling asleep.

I say, “I’ll get her.”

He says, “You sure?”

I say (big lie, it turns out), “I’ll be okay. It’s only ten minutes to the train station.”

He says, “Okay.”

It’s now about 10:10, maybe 10:15 (reconstructing from memory here).

I LET the MY problem compound – because I’m not making good decisions

And this is where I made my fatal mistake (well, okay, not fatal fatal, but fatal as in fatal mistake): I futz around a bit putting my embroidery away, and don’t head straight up to bed for a nap before picking her up, because I’ve been skipping that last night lately (it happens inconveniently in the middle of watching the little bit of TV or a movie we do in the evenings – which is also our chatting time for the day).

But I forget that it doesn’t matter if I’m sitting at my computer wasting time, surfing, writing an email to a friend: I am not risking anything major by missing that nap and being rather non-functional. After all, who can tell what level of non-functional I’m at late at night, and I ALWAYS resist lying down for these naps I need, because that’s what mental two-year-old do.

He trundles up to bed, I look at the clock – it’s now 10:35.

And I’ve just, by being non-functional already, priced myself out of that nap.

The MY avalanche begins

Because I do what I should have done when I said I’d go: the calculus of napping and time and leaving the house that is required – for me to be a safe driver on the road.

Here is what I HAVE to do: start getting ready 10-15 minutes before I need to leave the house, dressed, with shoes on, having my purse and PHONE with me. And my driving glasses, which I don’t keep in my purse all the time necessarily because I have two sets – day and night – and keeping them both there makes the purse too full and heavier.

I need to leave an extra minute or two if I decide to wear my leg braces. They’re an annoyance when driving, just a bit awkward, but help if I need to walk or stand more than a minute. I decide to just put on sandals. It will take me longer to walk to the car, but I won’t have them on while driving, and I won’t have to put them on.

I need to put clothes on, because I am in jammie-equivalents 99.99% of the time.

I need a pit stop.

I need to get out of the house, get into the car, and settle the controls and mirrors. I know others have used my car, and they won’t be in the right place.

The avalanche gets a’rolling/sliding

So I look at the time again, and there MIGHT be time for a shorty – a 10-15 minute mini nap (oh, how I wish I’d taken it!), but only if I get a move on, make the decision, and MOVE.
This is me, non-functional at night. I don’t make the decision.

Instead, my stupid mind moves to ‘what I need to do to just drive safely to the train station.’
If necessary, she can drive back. Unless she’s too tired.

I decide: Diet Coke.

I know it’s late at night, and caffeine after 3PM is a huge no no because it keeps me up at night.

But we’re in not-thinking-straight-crisis-mode now, and the Diet Coke WILL give me the kick I need.

I can take just a sip, right?

I change my mind: I won’t drink it before I leave. I will take it WITH me in the car, and that way won’t use it unless I need it.

Execution

I get dressed, grab my purse, put the sandals on.

One last pit stop and out to the car.

I sit in the car, adjust the mirrors.

And yup, you guessed it: it is now 10:55 on the car’s clock – and I forgot to bring the Diet Coke.

Damn.

Decision time.

I figure out I probably have created enough adrenaline to do this.

It would take me 5 minutes to walk slowly back into the house, climb the stairs and get the forgotten Coke, and get back to the car.

I know the train may or may not be on time, it sometimes takes them a long time to let passengers off, and there is a long walk from the far platform, and the Hamilton Train Station is a relatively safe place for her to wait for me if I am a few minutes late, even at 11 PM.

My mind emphasizes ‘relatively.’ I decide to skip getting the Coke, go the ten minutes or shorter in my immediate future, and get there on time.

Remember, these are all MY decisions. I want to be the perfect mother, saying, “It’s fine – I’ll get her,” to my husband, and showing up on time for my daughter, then one who can be counted on in an emergency to do what’s necessary.

Never mind that I’ve CREATED the EMERGENCY.

Because I so often can’t do these things. Because it is humiliating to be sick and ALWAYS dependent on other people. Because I rarely leave the house, and this is a short trip which should be within my limited capabilities. Because, because, because…

And the folly succeeds!

I do it.

I drive to the train station – and hit ALL the red lights on the way, at their maximum durations. It doesn’t matter – I’ve allowed for the maximum times, ten minutes.

I’m fine.

I get to the train station, and the train pulls in as I stop in the little parking lot opposite the entrance.

In a couple of minutes, the passengers start coming down the long staircase from the overpass.

This time she is the second person.

I flash my lights, she comes on over, and we head home.

On the way home I mention a tiny bit of the above. She says, “I could have driven from the station.”

I say, “I know, but I’m fine.” With a second person in the car, my anxieties calm down just fine.

Another bad decision? Probably. But easier – and we really are that close to the train station. 5 minutes – if you get all the green lights. Which we did. On the way back, of course.

No big deal – picking someone up at the train station and driving home.

The beginning of a really bad night

She says she’s tired. I tell her I’ll put the chinchilla to bed if she will feed Gizzy her treats. We agree. I add ‘put out foods for Gizzy’ to my pre-bedtime list. It’s a short chore in principle. If Gizzy has been out of her room, it may take longer to get her back if she’s hiding under the living room couch and I have to chase her out with a flashlight (the light, not the metal part).
Later, it will turn out that Gizzy never left her room (she sleeps under the bed) because it was Italian-American weekend at Mercer County Park, and they ended with fireworks, and fireworks turn Gizzy into a shell-shocked ball. No biggie – I leave out her food and close the door earlier than usual.

Now the payment for my folly really starts.

Daughter goes up to her nightly struggle with getting to sleep.

I am too wound up to go right to bed, but manage to force myself into bed at around 2AM, not too bad for me.

And the night of horror starts.

Why? Because I have broken the basic rule: you’re NOT normal

The root cause is the BRAIN FOG I live with.

The proximate cause is that I can’t metabolize adrenaline (which I know). My body insists on twitching every few seconds, just as I’m starting to fall asleep. It requires the FULL set of stretches and isometrics I do to get rid of the twitchies.

There are oh, about ten, bathroom trips. I have minimized water, though really thirsty. Doesn’t matter. I have a few sips.

I go up and down the stairs too many times.

I have a small protein shake – which, because it is full of ice, usually makes my core temperature go down and lets me get sleepy.

I end up eating two Atkins bars in the middle of the night.

I get up and play sudoku on the computer until I realize I cannot make that last column add up no matter how hard I try.

I spend time lying there with the lights off, exhausted, knowing it’s the end of the world, and I’m having trouble even doing my meditation breathing, and I’m going down hill so fast it’s scary, and I’ll never be any use to this family, and how could I possibly have thought I could do something useful like picking my own child up at the train station?

Eventually, around 5:30, I finally get to sleep.

Cost accounting: I lose a day of my writing life again

My happy body gets me up at 9, later than I’d generally like, ridiculously early after nights like this.

I put myself back to bed after what seems to be the twentieth bathroom trip of the night.
I sleep until almost noon.

And THEN it finally hits me: this is the AFTERMATH of adrenaline, you idiot. It happens every time – which is why you don’t allow yourself emotions, and you certainly don’t allow yourself adrenaline.

This is MY fault.

Again.

My decision-making functions don’t work, and especially don’t work when I’m tired. And go all to hell when I push them.

The conclusion: write it down.

Maybe it’ll serve as a cautionary tale, even though it’s a stupid little story of a single night.

But, you see, it will cost me today’s writing time (for fiction) because I’m singing at the Princeton U. chapel at the 4:30 Mass, and to get there for practice I have to leave the house at 3, which means, backtracking, I have to be in BED for the pre-nap by 2:10, and have to allow for something to eat in there somewhere, and I desperately need a shower, so I’ll have to nap with wet hair…

I started writing this at 12:03, and it’s almost 2 PM.

Another bad decision? Probably not. I can’t write fiction under these conditions – too jumpy.

Why do I write these things in such detail?

Because I’m working on a non-fiction book, working titled PAPER BRAIN, because no one has solved this for me in the almost 28 years I’ve had this stupid disease, and if I don’t write it now, I’ll forget.

This is, by the way, why Pride’s Children: NETHERWORLD will take a long time.

But I’m working on it.

And I could go on in this vein for another hour. Husband came in, and said, when given the mini-summary, “I could have woken myself up.”

I won’t even tell daughter – she has enough on her plate, and did NOTHING wrong.

But some day I’ll read this and remind myself, and maybe I’ll get smarter, or at least remember.

Or someone else will.

And I will continue to try to avoid adrenaline, the adrenaline I thought I wasn’t going to create or need – last night.

Be warned.


This was pretty much the way it happened. Stream of consciousness writing.

Don’t pity me. It’s my life. I try to learn from it.

I’m okay. I’m going for that nap – it’s 2:07.

Drop words in the box if it resonated. Thanks!


I keep forgetting: if you like the blog posts, consider buying the book in the sidebar – it’s written by the same detailed idiot with experience.

Copyright 2016 Alicia Butcher Ehrhardt

Writing a DRABBLE got me banned

A pair of small empty canvas sneakers between two sets of lower legs with sneakers; the word NO is in a yellow circle and the word BANNED is below.BANNED – FOR WRITING FICTION?

New milestone: my writing got me banned permanently on a site.

The reaction to a fictional drabble (100-words) was swift and disproportionate.

I was writing for FREE for a site which publishes a drabble a day (or none if they don’t have any they like). The reason: because, if they included your drabble on their newsletter, they would, by way of payment for your work, put up a link to your books.

Writers shouldn’t write for free, should they?

IF they choose to, and have a reason which makes business sense to them, now.

It’s fair enough: I write something you can choose to use, you give me a tiny bit of promotion by

1) letting me publish a sample of my work (NOT my book, just my writing), and

2) providing a link a newsletter reader can choose to click on to my Product Page on Amazon, where, as it happens, I have one single book up – 167,000 words of fiction (see that – I can write at more than one length!)

Drabbles? Is that like a haiku for prose?

Drabbles are an interesting story form. You get exactly 100 words and are supposed to tell a complete story, beginning, middle, and end, in that space. Obviously, you get little room for backstory or description, and editing a short story down to an even hundred word is an art in itself. I have written a few fiction ones before, and a whole book of non-fictional drabbles on Wattpad (64 at last count, I believe, mostly about the process of writing, editing, and publishing a novel).

Back to being banned, please!

I submitted some drabbles to the site as time permitted; the first five were, in due course, published.

Then I realized I had two available there which had not been published, and that the daily newsletter had been appearing for a while with no drabble in it, either.

So I thought it reasonable to go investigate; sometimes software somewhere between the site and your home computer resets, and the defaults need to be changed.

I was totally surprised when I attempted to log into the site and received the message:

Totally barred for unprofessional behavior

or was it?

Permanently banned for unprofessional behavior

(didn’t get screen shot; can’t now)

Excuse me? Huh? I hadn’t done any behavior at the site for a while, much less anything I considered unprofessional – all I did was post a few drabbles a while back for their consideration (no obligation – they warn you at the beginning that your drabbles may not be posted – I was fine with that when I started submitting a few, after noticing what other writers had created with their 100 words). These drabbles were in the site’s SUBMISSION queue, posted to my account while waiting to see if they would be published or used.

Pause: If I had been informed at this stage that something was unsuitable, I would have removed or changed it. You can hardly afford, when sending work anywhere, even for free, to get upset if it isn’t published.

What do you do when something like that happens out of the blue?

Through a back channel, and assuming something technical had gone wrong somewhere along the line with them, and expecting an apology!, I cautiously sent the email:

I went to the site this morning intending to post another drabble, to find that I have been permanently barred for ‘unprofessional behavior.’

This mystifies me – the only behavior I’ve committed at the site has been to post a few drabbles, some of which have been published in the daily newsletter.

Would you please tell me what my next step should be? I would at least like to retrieve the unpublished ones – or see a list of them.

I’m assuming this is a mistake. If not, could you please let me know what I’ve done, so I don’t do it again?

No answer came over a several day period; I assumed the person I had written to was busy (it had happened before that I didn’t get a response, prompt or otherwise).


CAUTION

Before I do this next bit, PLEASE NOTICE I AM NOT NAMING NAMES! I’m making the information vague ON PURPOSE: I believe this site and every other has the right to control what they publish, to remove contents and comments they find objectionable (as I have at my site), and to not be publicly indicted for their behavior because of it. In fact, I consider TROLLING and FLAME WARS very unprofessional, and do not participate.

In addition, brain fog and extremely limited energy and awake time due to CFS, make it really not worth my while. I actually assumed I had missed something important in this whole event simply because I didn’t read something or understand it right.

So why post at all?

BECAUSE it is MY first banning anywhere for writing FICTION, and I choose to write about the experience on my own blog. That’s what writer’s blogs are for. It may even serve as a cautionary tale for other newbies.

If someone I know very well wants the information, I will be happy to supply it; I have warned some writers already. PRIVATELY.


When you got no response, what did you do next?

Next step, try the front channel. I sent the following email to the site directly:

Dear XXX site:

I had been happily supplying drabbles; you published four or five of mine for the daily newsletter.

Then drabbles didn’t appear for a while, when I knew I had two left that hadn’t been used.

I went to your site to find I’ve been ‘permanently banned for unprofessional behavior.’

Since I’ve done nothing on the site, much less anything that might be considered unprofessional in my book, I’d appreciate it if you’d take a look.

If I did do something you objected to, would you please let me know what it was? So I don’t do it again?

Really clueless here – no idea of what I did. They had even actually published a somewhat similar drabble of mine before.

The response was swift and abrupt:

[Short pause here: because the sender of a letter/email owns the copyright to the words, while I could show a friend the actual email, I may not publish it exactly as is, and it doesn’t come under the concept of Fair Use. So I’m going to paraphrase it, and try to be accurate, but you’ll have to trust me on the content. Of course, the owner of the copyright – the sender – would have to own up to it and make a big deal of it if I did publish exactly what I received – but I’m well read in copyright law, and not about to give that a chance, since I’m trying not to identify the person, but only write as to how this affected me, okay? Also, too bad, because there was a lovely typo.]

It’s not professional to request help, dislike the help offered, and write about murdering the person who offered the advice.

[I didn’t request the kind of unsolicited advice the drabble was writing about; it was sent by a marketing firm without being asked for or wanted. Especially not wanted. And the number of writers who have use an incident that happened to them to choose their next murder victim in their stories is Legion, to the point where it’s a meme for beginning writers (I did it myself when I started) to get rid of some hostility that way. It’s FICTION, folks. What else do you call The Silence of the Lambs or Misery?]

This is rubbish.

[The opinion of the site owner is valid on their site. It was an intense drabble, and it took me an hour to get it to say exactly what I wanted it to say, with no room to qualify or maneuver. I have the feeling I hit a nerve somewhere, but have no idea WHAT nerve, unless the responder has had unpleasant experiences – and how would I know that?]

It’s a permanent banning so don’t bother me again.

[Not bloody likely. Excuse me for asking when you provided no information at all, and I didn’t think that much of your site anyway, nyah, nyah, nyah!]

I asked a writer friend whose response was, “Banned for fiction? That’s absurd.”

What should the response have been to my original email?

Any one of the following, singly or in sequential emails (if I was insistent), would have been the professional response of a site open to the public. And remember, the drabble was never published by them. It was in their SUBMISSION queue. Something like:

Your drabble does not suit us at the present time.

We don’t think drabble X can be rewritten to be appropriate for our readers, so we have deleted it.

Your drabbles are too dark; please don’t send us any more. We don’t think we are the right publisher for them.

We find your work too disturbing for our site. Please do not send us more. And we don’t think we want to associate with your work. Thank you for your previous submissions. We have closed your account. Please do not open another account.

In other words, just about any formal rejection you’d get from a publisher after submitting, oh, say, Carrie. Or Hannibal. Or Cujo. Or any slasher thriller or novel with Jack the Ripper in it.

What next?

Nothing, really. No action is necessary on anyone’s part, least of all mine. I know where I’m not wanted, and would not return even with a very good quality formal apology (which I’m not likely to get). The drabbles are mine (those were the terms – they merely requested you not post them elsewhere until they had been used on the site – IF they were used on the site). I always intended to publish them myself later.

I’ve put them on a new drabbles page; note that the drabble You Do What You Have To Do has a similar punchline and was published on the site (without ‘advice being offered’ by the victim, of course – which should make it worse, not better, as the results were applied without provocation).

I will put these on MY site, under MY control, from now on – it’s easier. I have apparently thin skin, probably too thin for indie, and it bothered me. I have now written the bother out, and it’s a closed matter as far as I’m concerned.


That all said, I don’t think it’s a bad thing for a writer to consider her words before putting them out into the wide world. Words have power – words can hurt.

Have you any experiences of being banned? With or without provocation? How did you react? (Not talking here to those who make a habit of being deliberately confrontational to get attention – you know who you are.)


Thanks to Stencil for the ability to make images for posts.

And, if you like the non-fiction and/or short fiction, consider purchasing and/or reading the long fiction – see sidebar. They’re written by the same person.

Mainstream: when your writing category vanishes

mainstream

THERE USED TO BE THREE GENERAL CLASSES OF WORK: MAINSTREAM/COMMERCIAL, LITERARY, AND GENRE.

Where did the mainstream go?

Caveats

I’m writing this post to dump the contents of my brain* about what has happened to the classification of novels on sites such as Amazon BECAUSE of the desire to categorize everything into smaller and smaller bins so the reader can find exactly the kind of book he is searching for.

It isn’t meant to be a scholarly discussion of any merit – and I welcome differing ideas, but would appreciate a general sticking to the question: Where did the mainstream go?

Mainstream fiction – as opposed to what?

This is a serious question. Type ‘mainstream’ into your Amazon search box and you won’t find the novels you expect. Maybe I should say that I’m older, and these aren’t the novels I expect.

‘General fiction’ brings up so much stuff I would consider genre fiction that it’s useless.

Although very well written genre work elevates a good story to a literary quality – which is where such novels as Margaret Atwood’s A Handmaid’s Tale are, in my opinion – it doesn’t make it mainstream or general fiction – the story is, in my mind, literary SF.

What IS ‘mainstream’ (IMHO)?

Mainstream fiction is meant to be appropriate and engaging for a majority audience.

Some books which I would call mainstream:

Love Story

The Thorn Birds (when it came out)

Gone With the Wind (ditto)

On The Beach and Trustee from the Toolroom (Nevil Shute)

Airport (and many of Alex Hailey’s other books)

Hawaii (ditto, Michener’s work)

Exodus, QB VII (and others by Leon Uris)

Authors such as Sidney Sheldon (The Other Side of Midnight) and John Fowles (The Magus)

The Bridges of Madison County and the novels of Nicholas Sparks

Some of these books are now classified as ‘classics,’ but were mainstream when they came out. Others are currently classified as ‘historical fiction,’ but the same applies: they were meant for a very large audience of literate people, an audience that went from children/young adults to older people, male and female, and encompassed much of the educated population.

There were no conventions; this audience could handle a WWII novel, a novel about finances, or The Key to Rebecca. Or Daphne Du Maurier’s Rebecca.

Mainstream. Commercial. Epic. General fiction.

Or simply what used to be called ‘a novel.’

And the category used to cover what was called a ‘big book’ – books with large casts of characters and elaborate plots, whether or not they were well-written, encompassing a spectrum of writing quality from Dan Brown to Ken Follett and Mary Stewart’s Arthurian legend novels starting with The Crystal Cave.

Mainstream novelists. People who wrote for the broad center of the complete reading public. Writers for whom plot and characterization were important.

But most importantly, people who did not want the reader to have to stop because of the language. The writing quality was sometimes awkward, generally competent, but stopped short of going into literary rhapsodies – because that would stop the readers’ flow.

Literary fiction then and now

A category which used to encompass everything from Proust (A la de temps perdu) to The Color Purple, ‘literary fiction’ used to mean stories that were intended for a more discerning audience than mainstream fiction, one with a more educated group in mind – and people who were comfortable with and appreciated language and description and minutiae and nuance. People who expect literary allusions and epigraphs and quotations from English poets, who can read Saul Bellow’s Seize the Day with pleasure.

I can’t. That kind of fiction, with its exaggerated precision and lack of plot (on the more literary or experimental end), makes me itch. These books are often taught in English and American Literature classes (the box where I found my husband’s copies had a large number of books of that kind) as ‘good for you’ and requiring study. It often meant work that was tinier in scope and more enamored of language than most readers were looking for.

Oddly enough, ‘literary’ as a category on Amazon is now used heavily by the big publishers to indicate that their books are better (and worth the much higher prices charged). When Data Guy puts out the quarterly charts of book prices by genre, the columns above 9.99 for ebooks are labeled literary and occupied mostly by traditional publishers: big 5, medium and small presses, and university presses.

Worse, literary is now the keyword associated with work which is the same as everything else, only better written. Literary fiction writers are probably screaming about that.

The problem with ‘literary’ as a category:

On Amazon, ‘literary’ has come to mean ‘mainstream.’

Now, ‘literary’ means anything not in a specific genre such as SFF or Romance or Thriller.

I’m sure authors of true literary books are not pleased to find their category invaded by everyone who thinks they write better than average prose.

The rise of genre fiction, partly propelled by Amazon and search categories

Books such as Asimov’s Foundation Trilogy were clearly science fiction. And The Lord of the Rings has always been fantasy.

Romance is a relatively recent category, but Pride and Prejudice is not a Romance; it is mainstream. Jane Eyre is now called ‘literature,’ but was mainstream when it came out.

Thrillers, mysteries, and such have always been genre – and some of its practitioners have elevated these genres by writing so well that we could probably call them literary mysteries, etc. – but the general audience I’m trying to delineate wouldn’t call them mainstream.

NOTE: there have always been omnivorous readers (I was one) who read anything they could get their little hands on, but we knew what we were reading when we chose a mystery or a science fiction story like Dune. Same stuff – only very well written.

Amazon provides all these categories and subcategories and sub-subcategories, but it doesn’t curate the lists. If you write ‘literary’ on your fantasy novel, it says ‘fine’ and shows that book with the literary novels and the fantasy novels, depending on other things like reviews and sales.

Nobody curates these lists online – it takes too much human time and trouble. Algorithms do it.

But it renders categories almost useless when anyone can put a paranormal romance with werewolves into general fiction. Or call their work literary. And I’ve had writers tell me they do this because their appropriate category is too crowded. Aargh!

What to do about this – assuming anyone cares?

And I do care – because I WRITE mainstream fiction, and I aim for the literary end of the writing quality spectrum – careful language. With the very strong warning to myself that it is NOT allowed to stop the flow.

I label it ‘literary’ and ‘general fiction’ and ‘psychological’ and ‘contemporary Romance’ (it IS a love story.

And I cringe when I do it.

I want my mainstream back. I probably won’t get it.


NOTE: If you’d like to see what the heck I’m talking about, Pride’s Children: PURGATORY, the first book in my mainstream contemporary love story trilogy, is available on Amazon US in ebook and print. For other countries, it’s easiest to type in the book’s name.

Thanks to Stencil for the ability to create images. I use fewer than 10 a month, so I have one of their free accounts. When I need more, they have very reasonably priced services with a LOT of flexibility.


*How and why I noticed the disappearance of the mainstream

I’m ideally positioned to answer this question because of an accident: for the past twenty-seven years, most of the energy normal people use for reading and writing fiction has been denied to me due to the energy-sapping disease called CFS – Chronic Fatigue Syndrome.

In the beginning, merely surviving the illness and coping with the children took everything I had. After a number of years, things improved a bit (or older children require somewhat less intense mothering), and I started thinking how to stay sane, not merely alive.

Writing was the answer – something I could learn to do and had always wanted to and planned to do.

We won’t argue names and etiologies here, but CFS has a constellation of symptoms, and my worst three are:

  • Brain fog
  • Exhaustion
  • Pain

The relevance of this is that I don’t have energy for reading AND writing, and, because I wanted to write, and had a story to tell, I have spent most of that time on the debut novel Pride’s Children: PURGATORY. And I didn’t read much during that period. When I woke up, ‘mainstream’ had vanished.

It’s a subject close to my heart – as I write mainstream fiction, and, as an indie, I’m having a very hard time connecting with the right readers. A collection of terms such as ‘literary’ and ‘contemporary’ and ‘romance’ does NOT add up to ‘mainstream love story which deals realistically with disability, fame, and integrity,’ does it?

‘Write the book you want to read’ is then followed by ‘find the people LIKE YOU who want to read the same book but can’t/don’t write it.’ The problem: I have no idea how I would attract ME to my book. And the categories aren’t helping.

What say you?

Using your writer RESET button asap

reset hit againSTEP ONE – CREATE RESET BUTTON; STEP TWO – USE IT

RESET just hit. Again. It’s been crazy – the day before yesterday I had to be coherent for over an hour in a meeting with the H/AC people – a sudden crisis because of an uh-oh! noise coming from the compressor/condenser/whatever they call the external unit, noticed by hubby when mowing the lawn.

Needless to say, I don’t do well without AC – my brain is as fragile as the chinchilla’s, and as useless when overheated.

And yesterday was the expected day from hell: with a whole bunch of incentives, all vanishing as the summer progresses, we bit the bullet and ordered the new system to be installed – immediately. Which meant they were here before 8AM on one of the hottest days of the year.

Did anything go wrong? Do we have AC?

They left by 2:30 – pretty amazing. It all works. We had a cool house by 3PM. Also amazing. Gizzy and daughter each had their room AC to keep them cool while they slept, sort of, as the gentlemen from A.J. Perri SLAMMED the door each time, about a thousand, they came in and out of the house. The whole house vibrates when you do that, and the sound is like having a two-ton piano dropped on the sidewalk behind you. I imagine, never having actually been present when they did it.

Note: when daughter or I leave the house, you can’t tell the door was closed, because we just close it.

ANYWAY.

It doesn’t matter – it still stops forward progress in my brain

Yesterday, all day after they left, I was completely fried and frazzled. Got almost nothing done except feeding myself. I couldn’t even get to sleep until 5AM. Naps and counted breaths and all my stretching yoga tricks – nope. Resisting carbs – nope. It is quite comical as I watch myself completely out of control – once I can watch myself. Which took until about a half hour ago.

So I just read my own post – this is why I write these things – and will continue the reset process with 1) starting to wake up daughter with sleep disorder, and 2) nap. Again. Until the process works, I’m back where I need to be, and I can function again. Which, if this comment is reasonably coherent, shows I’m starting to get to.

Toodle-oo!

Is there a moral to this story?

I’ve been doing this for years, folks – and I still have to drag my brain out of the deep well it goes to hide – with the slightest provocation.

It still feels gut-wrenching, fraught with all kinds of dire thoughts and worries, and hours of simply not being human. I can’t describe it any better – maybe it’s that my brain is so full of debris, a special kind of debris from things I try not to let get in there in the first place, things such as having to make a decision in very little time, feeling pressured, worrying like crazy about the alternatives, worrying if we can afford it, worrying whether we can afford NOT to do it…

On and on for hours – and not stopping until we make the best decision we can – at which point the consequences will start.

What I am finding is that the cycle is shorter now. I KNEW I had written a post on having a functioning RESET process (as a writer, but that’s basically my life, so really everything). I read it with the beginning of the returning threads of whatever it is that happens in there (and which I wish would happen MUCH closer to the actual crisis, but I also wish to be 30 years younger and have a metabolism like a teenage boy (the skinny ones – I already have the other kind).

Sooner, rather than later, IF possible

This is the fastest I’ve processed.

Maybe I’ll learn – IF there is time (there wasn’t) – to set up the RESET process BEFORE it is needed.

There’s a thought. For when I have some extra energy.

Push the button, folks. The warnings sirens – like the ones the installers of our AC set off during the process of installing, I believe, a new CO2 detector – will stop eventually.

Do you know when to push your RESET button?

Creating and improving the dreaded Author Photo: Part 2

look like 2CHOOSE YOUR GOAL: HOW SHOULD YOUR READERS SEE YOU?

This is a toughie, because we would prefer to be attractive naturally (‘attractive’ here meaning strictly to find more readers who will like your writing), and then any picture would do.

So you have to instead suss out what those readers expect to see, and trust to produce the kind of writing they like to read.

You can go with mysterious, and skip all forms of visual presence. Your choice. Which will be destroyed if you ever get interviewed, do a book signing, go to a convention – and someone takes a photo of the ‘mysterious author’ and makes it public.

“But,” you say, “I never go out in public.” Like me. Okay, not never, just rarely. Maybe then it’s even MORE important to have a photo you like be your representative out in the world.

I’m sure it varies widely by genre, and a fresh-faced young beautiful blonde girl would lack the picture creds to write a really nasty military thriller conspiracy. We trust Stephen King to write horror – he LOOKS like he writes horror. We have these ideas in our head…

If you don’t look like the stereotype, can you modify yourself to look like the stereotype? No.

Can you modify your PHOTO to look like the stereotype? Yes.

Determining the stereotype requires a bit of detective work

Pride’s Children: PURGATORY is a mainstream contemporary literary love story.

Here’s my analysis:

  • The author of such doesn’t have to be as pretty as the author of a Romance (who should at least look a bit like her (usually young and beautiful) heroine).
  • She should be older than the ‘pretty young thing,’ but maybe not ‘old.’
  • She should be smiling. Love, after all, makes us happy. But not grinning.
  • She should NOT look like a business person, yet she should look competent. She will be your guide on an adventure.
  • She should be slightly soft, rather than hard.
  • She should not look deeply worried.
  • She should definitely not look realistic, warts and all.
  • She should be dressed in something that does NOT signal Romance or Romance writer (think of Meryl Streep in She-Devil with Rosanne Barr – go look; I’ll wait). Nor should she dress like Roseanne Barr on that poster (which is a parody of the Romance-reading suburban housewife). Roseanne Barr is a beautiful woman, and so is Kathy Bates, but they have made a career out of allowing themselves to be portrayed as ugly or frumpy – I’ve been startled by how well they clean up!

How does this translate to what I hope to aim for in the Author Photo?

Plan to ‘airbrush’ or ‘retouch’ the heck out of anything I choose. This is not the time to be starkly realistic.

Plan to pick a background to enhance the person; here’s the Kristin Hannah photo on Amazon – if I looked like her… but older? A really good makeup session, and a really good photographer would do that for me. The choice of clothing and the background combination bring out her eyes beautifully.

A forward-facing but slightly un-centered and three-quarter body position is better than one squarely facing the camera, like a mug shot or a photo for a job application.

Look directly at the reader. Readers need to be able to trust the writer of an improbable tale.

Smiling, but not grinning.

No plastic hair for this – enough said? Soft, flowing, but tidy, a frame for the face. This part is me: no bangs/fringe. Not too much hair obscuring the face. No hint of hiding.

And, of course, the EXPRESSION – the overall ‘feel’ of the image – has to be right. And no, I can’t define ‘right’ in this context; I hope I’ll know it if I see it. It’s not just ‘pretty’ or ‘confident’ or ‘competent.’

It’s the same reason I licensed the photo for the cover that I chose: I could not find another that had the right ‘expression’ as a whole – and that one worked for me, though in that case the face is not visible – it’s the whole body and body position that expresses the longing.

Okay now – skillset? Acquire or farm out?


CAUTION

*** This is how a PWC* is doing this, not how you should if you want a beautiful photo. ***


I thought about going to fiverr for the retouching after I picked out a photo with a suitable expression. There are a lot of people there who will retouch for a very reasonable fee, and the portfolios I saw were impressive.

Maybe I’ll go there later, if Richard Avedon still doesn’t live in Hamilton, NJ.

For me, it’s always the balance between how much energy it takes to set up and work with another person, usually a healthy, energetic person. But more importantly, people with their own ideas and opinions, whom you hire because of those, are not going to get exactly what you want without a good deal of back and forth over a suitable period of time. And it would take a lot of time to vet the portfolios, and go through the whole process with several people. I might be surprised and pleased – the same way I might be surprised and pleased with some of our local photographers – but I don’t have a history of success in that department.

Maybe I’ll just send the picture I choose, pay three or four people, tell them ‘glamorous,’ and see what comes back. Still sounds like a lot of work.

I don’t have a friend who just had a gorgeous head shot taken.

I don’t live near my sisters, or their hairdressers.

Pixelmator and Youtube to the rescue!

With the caveat that the best way to get a great picture by retouching is to start with a very good picture that is almost what you want, but needs a little enhancing and cleanup – and I lack said good picture – I located online, free, available any time (my kind of energy saving), a series of videos giving me exactly the tools and instruction I need, and which I am learning, taking notes on, and starting to follow.

As usual, I talk/write too much, so I’m going to cut the ‘goal’ post off here, and write the rest as I try to achieve my goal: to look like me as you should see me, not as the cold harsh light of day does.


Your place to dump the insecurities that make this dreaded – from the Author Bio post comments, I assume many other authors (and normal people) have the same problem, or I wouldn’t be posting this!


*PWC: Person with CFS (chronic fatigue syndrome).

Also, thanks to Stencil for the free account I’m using to do the images at the beginnings of my posts. They have paid accounts if you need more than an occasional image.

Creating and improving the dreaded Author Photo: Part 1

look likeYOUR CHANCE TO CONTROL HOW THE WORLD SEES YOU. LITERALLY.

After having just interacted online about the dreaded Author Bio, and navigated that to a conclusion (satisfactory or not), I continue on my mission: to have every useful feature that connects me to potential readers for my fiction neatly and professionally (in the DIY sense) filled out.


CAUTION

*** This is how a PWC* is doing this, not how you should if you want a beautiful photo. ***


I COULD go out and find a photographer, get the professional headshot created, and post that. In fact, that’s on my To Do list. Has been for YEARS. NOT very near the top. If I ever become famous, have some extra time to waste, or decide I absolutely must, well, there are photographers in Hamilton, NJ. Every once in a while I look them up online. Richard Avedon is NOT in Hamilton, NJ.

I want to return to writing – and I’ve seen so many headshots that I positively hate, and few that I don’t – so, in my ‘fools rush in’ usual manner, I’m trying to make do with no help from anyone. Because I can count on me, and my tools, and everyone else seems elusive and slippery.

I have a nice little camera, courtesy of husband a few birthdays ago. It has lots of megapixels. It is the source of the snapshot that is the current photo of me in most places online. I’ll put it here, because the whole point is that it’s about to change.

AliciaHeadshotNO

It has, of course, been edited. Taken in New Orleans on a family vacation a couple of years back, it is cunningly calculated to fool all automatic editing by the cunning collection of windows and other architectural features from the cathedral I was standing in front of when someone caught a snap of the least objectionable expression on my face of the whole vacation.

Truly.

The source of the problem is…

That I, like many women (including models), don’t like the way I look in photographs.

There are PLENTY of photographs of me.

I come from a photogenic family – any picture of my sisters will show you how beautiful, polished, smiley, and always impeccably dressed and made up and coiffed (even on the golf course) my sisters are. Mother’s cheekbones are still impressive and lovely, and she just turned 93. She is ALSO kept beautifully coiffed by her lovely helpers.

But I rarely measure up. The CFS means the energy it takes – and it is considerable, ask my sisters – is not available. I throw myself together the best and quickest I can (cleanliness IS next to godliness, if not before it – I manage that often), with no thought for style.

This little detail is a very large part of why ‘Have professional headshot taken’ is so low on the priority list, BTW. Besides the four months of doing nothing but dieting required, I would have to get hairstyling and makeupping and fashion updates which are out of my energy budget from the sheer amount of time they would take, not to even mention the energy.

Your excuse may vary.

So the solution comes from…?

Well, I’m working on it.

For people like me, there are two sources of an acceptable photo:

  1. Candid shots taken by someone else – the source of the one I’ve been using
  2. Shots taken by me on daughter’s forward-facing iPhone camera – one of these days; for reasons which will be discussed below, it won’t help until I have some extra energy
  3. Shots taken by me on my computer – with the software and hardware already available to me – in this case, the wretched Photo Booth

Why wretched? Because it turns out the resolution is absolutely crappy, and there is no way to change it! The resolution settings for the camera – which sends much better quality pictures of me to Skype and such (so I know it can) – have NO way to be accessed ON the computer.

But it has the ONE advantage I need: I can see what I look like as I take a picture. Or rather, what I THINK I look like. So I can manipulate the heck out of that.

The source photos I accidentally acquired

One day within the past year, I went to church, where I sing in a tiny choir.

As I try to do, I was tidy, had a tiny bit of makeup on (okay, eyeliner – it makes my pale lashes stand out a little; possibly lip gloss – easy compared to lipstick), my favorite purple shirt, and my hair was as clean and soft as it gets with my limited haircutting and maintenance routine (yes, I cut it myself when it drives me crazy; very fast compared to that energy-sucking salon trip which normal people use).

So, basically, I looked as good as it gets nowadays (don’t expect that much).

For an unknown reason, I had a bit more energy than usual when I got home from church (maybe daughter drove), I sat at my computer, and it hit me: take some quick snapshots – and we’ll process them later and see if we can kick this headshot thing up the next step. I took my glasses off to avoid reflections. Besides, I don’t usually wear them EXCEPT at the computer, so you wouldn’t expect to see me in glasses.

I quickly took about 20 photos with Photo Booth – and the day’s extra energy was used up.

When I looked at them a few days later, I discovered that Apple, which usually does much better for me, had chosen the low resolution photo as the output of this app which comes with the computer AND there is no way to change that!

Aargh! After blowing my energy wad, I had 20 low resolution photos of me at all kinds of coy angles, every one of which would go straight to the garbage if I had my druthers, and not one of them was suitable as taken because of the background, the coloring, and the subject.

But I’m nothing if not game, and I will be using one of these photos (I might even dare post beginning and after versions) as the source of the dreaded Author Photo, which, unless you are beautiful may actually be better a little fuzzy. Okay – a lot.

Thus endeth Part 1.


LAST KINDLE COUNTDOWN DAY US AND UK!

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If you like my prose, consider purchasing my fiction. It’s written by the same person.


Your place to dump the insecurities that make this dreaded – from the Author Bio post comments, I assume many other authors (and normal people) have the same problem, or I wouldn’t be posting this!


*PWC: Person with CFS (chronic fatigue syndrome).

Also, thanks to Stencil for the free account I’m using to do the images at the beginnings of my posts. They have paid accounts if you need more than an occasional image.