Tag Archives: CFS

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.

Real Fiction: How to develop empathy

Girl holding heart made of lights at night. Text: Use Real Fiction (trademark) to develop empathin vicariously. Alicia Butcher Ehrhardt

EXPERIENCE MANY LIVES VICARIOUSLY – BY READING

Let’s start somewhere

NOTE: None of what I’m about to say is meant to ask for help or pity, and certainly not for special privileges. Just understanding. JUST. And, among those whose lives isn’t constrained, both happiness for what they have, and a little of that empathy for those who don’t have it.

Even though political events have made this development more urgent, I’m not going there: better writers than I are doing that right now.

I’m discussing the part of empathy associated with illness, chronic illness

When friends seem surprised that I’m still sick, I want to respond as a character in my novel, Pride’s Children: PURGATORY does:

“Has the word ‘chronic’ been marked in dictionaries as ‘Archaic’?”

They don’t ask this question of people who have ‘real’ illnesses such as Lupus or MS or Rheumatoid Arthritis, do they? If someone now lives with HIV, friends usually understand that there is no cure, and remission is bought by a DAILY regimen of pills under a doctor’s care.

They understand that many mental illnesses are chronic, and also managed with a drug regime – every TV viewer has seen the TV writer’s trope: a violent person who is turns out is to be pitied because he has a mental illness, and is ‘off his meds.’

Invisible illness – can’t see it, must be fake

But if you have one of the invisible illnesses, ME/CFS or FM or Gulf War Syndrome, that are not understood because they have been disbelieved by medical ‘professionals’ in general, you are expected to have made a miraculous and convenient recovery using supplements, alternative medicine, acupuncture, specialists, exercise, diet, or yoga, and are now back to full health because, the groups’ sick in-joke, “You don’t look sick.”

‘Chronic’ thus means ‘inconvenient’ to those inquiring, “Are you still sick?”

It doesn’t mean, ‘needs continuing care for symptoms that wax and wane and never go away.’ It doesn’t mean, to the friends, ‘let’s not forget her because she doesn’t have the energy to make new friends.’

And it doesn’t mean, ‘Advocate for her, because she doesn’t have the energy to do it for herself.’

Then something happens to THEM

And it is too late; they get a crash course in empathy – or not.

Until the ill one is their child, their spouse, or their parent or grandparent, and they have to provide or arrange for whatever care is necessary, ‘chronic’ is just plain inconvenient, unless it is also ‘malingering,’ ‘gold-bricking,’ ‘laziness (she’d get better if she just got out and exercised),’ or ‘playing the system so she doesn’t have to work.’

And then, unfortunately, once they understand, they are too busy to be useful – because they are taking care of said loved one, and the now know how much energy it takes to do that, and have little left for the advocacy that is so desperately needed. Catch-22.

Which brings me to the point of this essay:

There have to be other ways of developing empathy than suffering chronic illnesses in your own flesh.

One of the best – and highly underutilized – is fiction.

But not the special books for children – barely disguised non-fiction

‘Little Tommy has Cancer’ or ‘What Does Ostomy Mean’ or ‘You have diabetes – now what?’ – designed, usually, to help the child, school, teacher, or close friend understand what is going on with the child.

Not usually meant for the world in general, such a book might have a cover picture of a kid in a wheelchair, or with an oxygen supply device, or getting a shot. These books are necessary for the ‘different’ ones, the same as the Barbie with crutches is meant for the different child to see herself (as both handicapped AND held to impossible fashion standards).

They are less frequently bought for the kids who don’t have the disability, disease, or impairment – but are there in the library if necessary. These aren’t the fiction I mean, because they’re barely fiction.

Nor books (or movies) intended to promote suicide as noble

Those are just disgusting: if someone becomes broken their best option is to find a way to tidy themselves out of this world so as not to inconvenience their ‘loved ones.’

Ask any real family affected by suicide whether they feel loved by it.

Million Dollar Baby, The Ocean Within, Me Before You – it has become a trope.

I reserve judgment in the case of ‘intractable pain or depression’ – and I could not possibly judge the person who chooses this exit if it is truly intractable – though I often hope it means they have been unsuccessful at finding help. It is not a matter for fiction, because fiction always conveniently leaves out the real details. Horribly depressed and wracked by pain people can and do have ‘quality of life’ in many cases – when their need to stay alive for those same loved ones is their prime imperative. YMMV.

Alternate preventive empathy development made easy via REAL FICTION

In Real Fiction (TM) of the empathy-developing variety, characters happen to also have a disability, illness, or difference – but it isn’t the focus of the story, while always being there.

Real fiction offers the reader a way to understand without being personally overwhelmed.

The writer can go into the thoughts of the character to show inner strength balancing outer pain.

The reader is thus safe to explore the consequences and conditions set up by the writer, to understand more, to literally be a voyeur – or in modern parlance to inhabit a virtual reality – that allows the reader to experience the life of a disabled person from the inside.

This alternate reality is temporary, and can be left or abandoned if it becomes too much for the reader to bear.

Fiction allows the small details that are important to the character to emerge, rather than be lectured about.

A great example is the book (and movie) Ordinary People, by Judith Guest. A family tries to understand why their son attempted suicide – and the family dynamics digs down into the real cause.

Pride’s Children is designed to be REAL FICTION

One of the main characters is a former physician who has CFS (ME/CFS), and is no longer able to practice medicine (which requires energy and brainpower), but has retrained herself as a novelist.

The story shows the development of her change in the area of personal worthiness for her goals, triggered by an accidental meeting with a charismatic actor which then affects her whole life.

Is she correct in the assumptions she’s taken on as to her own value as a PWC (a person with CFS)? Will chronic illness limit the rest of her life? Can she hope for and desire what ‘normal’ people are allowed by society to want?

At least you don’t have to get sick to find out. You will just have to read.

And be patient. It’s taking the writer a while to finish the story.

What’s your favorite vicariously-lived life? Who would you have liked to really be?

Do not allow Old Lady Medicine

Tunnel looking up at sky. Text: Don't accept old lady medicine. Your future is at stake. Alicia Butcher Ehrhardt.DOCTOR’S EXPECTATIONS DETERMINE YOUR MEDICAL CARE

Fight for your life and your chances

Husband hands me a magazine, the Health Check that our local hospital, Robert Wood Johnson at Hamilton (formerly Hamilton Hospital), sends out to everyone whose address they’ve ever received for any reason.

In it, it talks about the McKenzie method – a way for people to reduce back pain and sciatica by doing a series of exercises which reduce the pain and then strengthen the back.

And the suggestion to do this is given by the orthopedists for a woman who is ‘a dancer’ and very active. So she avoids surgery. And they are proud of themselves because they helped her ‘avoid surgery’ (PS: she had the same diagnosis I did, spondylolisthesis – vertebrae out of alignment).

THEY DIDN’T EVEN MENTION THE EXERCISES TO ME BEFORE SURGERY.

I was over 50, and had CFS already. I told them EVERY SINGLE VISIT that I wanted to walk properly again. They didn’t even send me for PT for walking.

Be warned: what comes is something you should know: doctors will make an arbitrary decision when you come in about whether you should have the ‘treatment for those who have a chance’ or ‘old lady medicine.’

And it will affect the rest of your life.

McKenzie back exercises

I do them every day. The book is called ‘7 Steps to a Pain-Free Life,’ by Robin McKenzie, an Australian physical therapist.

My PT taught me them – AFTER the orthopedic surgeon ruined my back.

When I wake up with sciatica (much less frequently now, and usually due to lying on my left side while asleep without the little pillow – for some reason that side doesn’t like flat), I head for the floor, and, within minutes, start working the vertebrae back to the non-painful position.

They wanted to operate again; all three of the surgeons I consulted – different operation each. I walked away. Still working on getting better at walking, but the surgery took me a YEAR to recover from, and had me back in the ER for non-existent pain control, so I’m not likely to repeat.

Why are older women more vulnerable?

Because, among other things, it’s easier. Cut, get fee, blame lack of success on the patient.

They don’t expect us to improve with exercises, or to do them, so they actually give us less useful PT (warm compresses?).

If you have an older relative, especially a female one, watch for this: the key is to DO YOUR EXERCISES – and to insist they give you ones which work – just like the ones they gave the young lady, or the teenage athlete. They will hurt, but it should be bearable if you’re doing them right, and it gets better. Takes me less than fifteen minutes on a really bad day, and I do them daily prophylactically.

Ask for ‘young woman exercises.’ Tell them you’re aware of ‘old lady medicine,’ and you don’t want it. Stay away from surgeons as long as possible – once cut, things are NEVER the same (there’s a whole section of my abdomen where the C-section left me with no feeling, and the hernia above my belly button has been ‘repaired’ THREE times – and is back).

Wish I could go back in time. What do you think?


Today is the last day of the 0.99 ebook sale for Pride’s Children (upper page on the right).

It has been my privilege to pretend to be normal

An autumn sunset. Text: Too Late, A prequel short story, Pride's Children. Is it my child? Alicia Butcher Ehrhardt

COVER REVEAL – TOO LATE, a Pride’s Children prequel short story

For the last few days, even though I haven’t changed, and rarely leave the house (and have done so even less than normal because the coughing reduced me to a quivering winter mess), I have had the excitement of participating, however vicariously, in the excesses of the new administration, and the marvelous Women’s marches worldwide.

It has been a privilege to be on Facebook, and write about my reactions, and pass on creative work of others. The activists knew where to start: make a BIG statement.

I like to think I would have gone, had I been able. Let’s leave it at that, so I don’t have to remember how much I hate crowds and uncertainty and noise and the feeling of not being in control which goes along with even peaceful demonstrations. And the fear of being cannon fodder should anything go wrong.

I am so proud – but I am not, by temperament or inclination, a participant or a rabble rouser or a shouter. Or a member of a group. That’s not, for better or worse, the way I think.

My charism is the individual effort

‘Charism’ is a good word, an important word. Wikipedia defines it as ‘in general denotes in Christian theology any good gift that flows from God’s love to humans.

When I was the only female student in my cohort in the joint Nuclear Engineering/Electrical Engineering/Physics PhD program at the U. Wisconsin-Madison, I wondered if God wanted me to be that, if that was my charism: to bring the presence of women to a heavily-male program, and that partly kept me working when things got hard (as graduate school does). There was a woman in the cohort ahead of me, and one behind, but it was a big program.

When I worked at the Princeton Plasma Physics Lab, I was one of three women PhDs – and wondered the same: was that where I was supposed to be? Again, a hotbed of male PhDs, where I learned early to identify myself as ‘Dr.Ehrhardt’ on the phone or be taken for a secretary (those same secretaries were my friends, the ones who knew me). ‘Dr.’ cut through a lot of BS.

And then I got sick, lost the physics, and became one of a whole host of women with a mystery disease (CFS) which mostly affects women. I maintained some small amount of individuality by being a homeschooler, using all that training for SOMETHING, even with no energy.

And then came writing.

It is in writing that you are truly an individual, because the kind of novels I write are NOT, in any way, a collaborative effort. I must have been struggling with that feeling of not mattering AT ALL to insist on doing everything myself.

I discovered I can do this. And I hope it will all be worth it, because the writing gives me joy, and the readers who get me, REALLY get me.

And this is what I do with my tiny bit of energy. Because there isn’t enough for both, I have to pour it all into the novels, and let other women (and men) have my admiration and support, whatever that means.

Because I am writing a trilogy about two women, one disabled, and the one man they both want – and why and how – in the backdrop of the world of entertainment, where fame is as fleeting as the last thing you did.

And I think it WILL make a difference.

Try my writing (click on the cover on the top right – 0.99 until Jan. 30. 2017). It is what I do, what makes me unique. Tell me what you think. Is it worth a woman’s life?

A day of peaceful marches succeeds

AMERICANS HAVE THE RIGHT TO PEACEFUL ASSEMBLY AND PROTEST

It’s guaranteed by our Constitution:

The First Amendment states that “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.”

Funny how many people don’t know that.

I spent a good part of the day on the computer, wishing I could be with the peaceable* men and women who marched, all over the States and the world, to remind the incoming president that his power is nowhere near absolute, and he is the servant of the people, not their master.

Friends of mine who posted pictures were in DC and Oakland and other marches, and one of my children was at the San Francisco march.

I am very proud of all the people who, in the face of frustration, marched with peaceful intent. They were marching even for the people who voted for the present administration, because those people will need healthcare and job rights, too.

They put their money where their mouths were: it took planning, organization, time, money, and effort to get that many people – literally millions – to the many march sites.

Crowds scare me – I avoid places I can’t get out of quickly

How much of that is me, and how much decades of chronic illness and no energy, is debatable, but I hope I would have made the effort, somewhere, if it were physically possible; I would have liked to march with friends.

It is not enough to be there in spirit. The Millions Missing protests this past year had people with CFS send in their shoes to represent themselves, and a pair of mine went. Symbols are important, but it is sad that my shoes could do something I cannot.

There have been marches by disabled people – but they are usually much smaller and require a lot of support.

My stamina is zilch: the marches were for reasonably healthy people who could travel, assemble, walk the distance, stand and listen – and then get home safely. These are the times when I miss that the most, when everyone else gets to go.

Most of the time I pretend I live in this room at my computer by choice; today that delusion was very hard, especially when my friends were posting selfies of themselves with the monuments on the Mall in the background. I got to go with them that way; I spent the day watching, reading, listening.

And sleeping. Thrilling it was not.

And glad I could stop worrying when the message came from San Francisco: Home safe.


*The previous version: If you want peace, prepare for war.


What’s better, working for justice or preparing for war?

Writers censorship by insiders still censorship

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

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

Alicia,

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

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

Thank you, [NW – name withheld]

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

A little background would set this in context

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

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

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

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

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

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

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

Fiction breaks down walls

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

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

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

And you’ve heard endlessly my statement that

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I guess that covers it:

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

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

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

I will happily listen to opinions civilly offered.

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?

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!)

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.

Pride’s Children’s rankings after a year

pc-1-yr-sales-rankSALES RANK

pc-1-yr-kindle-romance-contemporaryKINDLE, CONTEMPORARY ROMANCE

pc-1-yr-kindle-litfic-literaryKINDLE, LITERARY FICTION

pc-1-yr-author-rank

AUTHOR RANK

IT’S BEEN AN ODD YEAR AS A FIRST-TIME PUBLISHED NOVELIST

None of my sales have done much.

Word of mouth has been how most of the sales came about.

I am basically hand-selling to people I meet who also seem to have reading habits that mean they might like PC.

Now that I have a decent, if small, number of reviews (25), with at least one at every star ranking, I will be trying a few Fussy Librarian offers, to try to reach people outside of my immediate circle. If FL will have me.

KU, which I had high hopes for, has been a dud. Being in or out hasn’t made much difference.

The last Kindle Countdown Deal sold two copies (0.99 – so I got 0.67 each). Definitely not worth the effort.

Goodreads has provided friends – one or two sales; ditto FB and Wattpad. I have sent out a LOT of review copies (just ask – I will send you one). Everyone says I’m pricing wrong, but the 0.99 sales do nothing – and you can always have a free review copy!

I’m sure this is the way beginners start; I also spent way too much time watching it happen, as I’m sure many beginners do.

I’m well started with PC: NETHERWORLD, the middle book in the trilogy, full of surprises (if you can trust me).

And it’s been otherwise a very crazy year, so I think I’m going to put my head down (as soon as I can for sure is next Wednesday), and write, and try not to panic. Careers last a long time.

I liked the pretty graphs – and a year seemed to be a good time to review the results.

Oh, and I’ve sold, I believe, 7 paper copies.

I have avoided advertising which focuses on me, and kept it on story and writing (except for the online ME/CFS group where they already know me, and this blog, of course). I don’t know if that’s wise, but it is a one-way street to move into talking about a disabled writer, which does funny things to most people’s minds (such as lowering standards, and expecting inspiration, and just plain not wanting to read) which I’d rather avoid. On the other hand, an awful lot of books come out every year.

Hope this next 12 months works a bit better.

ETA: Author Rank pic.

 

The damaged brain: the OTHER writer’s block

A volleyball alone on the beach. Words: Will I know when the game is over? Or will my brain just slip away. Alicia Butcher EhrhardtOVER THREE WEEKS WITH NO REAL WRITING IS SCARY

I live with a major fear, that my damaged brain, so far able to eke out a couple of hours on a good day for being creative and writing fiction, will some day become unusable for this purpose.

Add aging decline to the damage sustained from illness or trauma, with the inevitability of death at the far end of the descent, and the conclusion is inescapable: one of these days I will write my last, whether I know it at the time or not, and I won’t be able to cajole the neurons into working for me ever again.

This happens to Alzheimer’s patients, such as novelist Iris Murdoch. One day, after not much work, the pen is put down – and never taken up again.

Or a stressful interlude may divert the writer for a while to other matters, and the synapses break down in the interval – and writing is never resumed.

What will the end be like and when will it come?

I don’t fear it so much if I don’t notice it, though I fear greatly the depredations dementia perpetrates on its victims, including the lucid interludes which come and go, with the old desires undimmed.

What I fear is what happens every time I take an enforced break – taxes used to do it to me, preparing for/going on/recovering from vacation does it now every time – of not having my good time available to write with regularly because said good time is required for more pressing matters which I have decided to allow/have forced on me.

This vacation, which ended last Sunday, Oct. 9, with a long day of travel, has been followed by an extraordinarily non-productive week. Unproductive of fiction, though I’ve written several blog posts.

Because I’ve sat myself down at the computer most of every day to write fiction. And it isn’t coming out because I’m not having my good time. It isn’t happening.

Interruptions are harder for me, and take longer to come back from

What I’m having a lot of is interruptions. Hubby is doing taxes, belatedly, for NJ – and has decided to investigate various long-overdue details from the years when I was doing them because he was working – and ‘needs’ things, and he needs them now so he can move forward with his plans, and he doesn’t know what he will need ahead of time so I can locate them the night before, and he can’t divert his attention to something else because whatever it is is on the critical path. One or two of these diversions, which cost people in general almost a half hour each to recover from, and me much longer, and that day is dead to fiction. Yes, I’m that fragile.

Daughter is moving out, coming and going at random, requiring something very small at times – where are the decongestants? Or rather where is the box where I usually find decongestants? Which requires that I stop what I’m doing, important or not, and find them in the suitcase we took on vacation, which I meant to return to the box on the floor which will then go back to its natural place in the bathroom closet – where she would have found the decongestants without bothering me, had I made it that far on unpacking.

A friend who moved precipitously to Florida, without me having a chance to take her out to lunch and talk with, calls. We spend an hour on the phone, and I will take her out to lunch when she comes back to get the house ready for putting on the market – we’ve been friends thirty years – and I want to talk to her. Up until recently, she was right across the street – and we rarely found time to talk because I can’t easily walk over there, and she has grandchildren, and there was always tomorrow – only now there isn’t.

This Saturday started with the leaf-blowing neighbor and his lawn cutting service making a constant noise I could only partially block with my ear-plug-and-industrial-strength-headgear solution – which isn’t really comfortable enough to write with on the days where I’m so close to the edge of not being able to write – like today. The leaf blower just came back for a second session, forcing me to wear headgear again for my afternoon nap.

Coming back from a sea-side vacation with wet bathing suits and T-shirts requires laundry. It has taken chunks out of four days, and will take more: gather and wash, put in the dryer before it gets moldy, get daughter to bring up because heavy loads are getting too much to me, and folding – but it’s sitting on top of my still full suitcase, instead of being stored where it belongs, closets and drawers in several rooms, because it is ‘vacation stuff.’

Healthy people don’t have these fears, even when they get sick

Daughter pushed through, loaded the car on Thursday, drove four hours, unloaded in NY state. Today she drove back with the feeling of being sick, and went out for the evening and possibly overnight – as soon as she had some lunch. I used to be able to do that, LONG ago.

I wrote the above a while ago, before a nap and dinner, and then the hubby came in and complained about being under the weather (he napped all afternoon) since we got back, and the fear died down a bit. Maybe we’re still fighting off that small vague illness we all brought back – and the aftereffects will go away.

I hope so. Even at my pace, I want to use what’s there to write.

But that fear won’t ever go away.


Do you experience this kind of writer’s block? For the same – or a different reason?


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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