This is still our house, but really? Now? A month before we don’t own it any more?
Didn’t need the worry!
We have owned this house since it was built in 1981. March 5th we moved in, and it has had no other family in it. In all those years, we NEVER had a sewer problem connected to the street.
Well, just for funsies, the day AFTER the Open House, a small sink hole developed by the curb, right near the real estate sign, and we wondered whether they had nicked the water line into the house (since no markings were made on the grass and bushes, and no flags set by utility companies). So we duly reported it, the township fixed the small sink hole, and we thought that was that.
Told lawyer and real estate agent, so they wouldn’t say we didn’t inform them of potential problems (water line, sewer) that we might be required to disclose.
Then we got a message on our answering machine from the head of the Sewer Dept., stating there was a problem where our sewer pipe connected to the main – in the middle of the street (so not on our property).
When contacted, found out they would get it fixed by contractors as soon as they had enough for a day’s work for one. We thought it would be forever, but they started early this morning, did NOT (bless them!) ring our door bell until around 9am when they needed us not to send anything down the sewer line for a while (now over), and they proceeded to make a standard repair.
Which they are in the process of asphalting right this minute.
What was that sound?
The sound I heard, which was like every helicopter in every movie, was actually a man tamping down soil and gravel into the hole with a jackhammer-like device (probably called, with all due irony, a tamper), was not Black Hawks landing on our lawn.
Much more prosaic.
And over much sooner than I expected – so I am impressed by our township’s efficiency at keeping us in the loop, and the contractor’s at getting a ‘not uncommon’ problem fixed efficiently and quickly.
Yay, First World problems.
Not our responsibility, thank goodness – no digging up the front lawn and all the way to the house – no cost.
I have never been happier to pay property taxes which include infrastructure.
Of such is my life right now.
And y’all get such interesting but ultimately unimportant trivia because I can, courtesy of iPhone and WordPress, mail a photo snapped in a moment out my office window directly to my Media Library. Gotta love the modern world.
I CAN’T GET STARTED ON ANYTHING
Because I’m literally in the middle, feeling like a millipede, waiting for a shoe, any shoe, to drop, so I will know what to do next.
I can’t even plan. I have a general outline of what needs doing between now and some kind of stability: get whatever still needs fixing done on the house between now and the closing date, assuming the house inspections and the mortgage applications don’t run into snags we can’t resolve, which would toss us back to a Step a few before the current one, like Groundhog Day. Until we got it right.
I know we have to finish some kind of packing job to take whatever possessions we decide we want to retain with us.
The parameters are not mine to set
I’m on someone else’s time schedule.
We are waiting to find out, now that they finally have all our paperwork and deposit, whether the CCRC we’ve applied to will take us. We don’t have huge worries there – they were very nice when we visited, and are perfectly pleasant when I email, but I have been disabled for a long time now, and it shows. It shouldn’t keep me from moving into an Independent Living apartment, but I still haven’t heard. So I wait for that shoe.
Can’t seem to get hold of the handyman – that’s a surprise. He’s probably on vacation with his family – or something – but I’ve left a couple of messages over several days requesting a callback, and nothing yet. His work was excellent, and he was recommended by our agent (who doesn’t know him personally, nor his work), and we will need another couple of full days of his ministrations. I said on the voicemail that we’re not in a huge hurry. Maybe that was a mistake.
We can’t use him until the building inspector for the municipality comes on Friday…
…Oops. The above made me check my phone – two missed calls from Chris. Phew. We had a short talk; he’ll make time. One more down – except that this was nothing more than a ‘stay in touch’ call, requested by the husband. Nothing has actually happened.
Being in standby mode
That’s typical: I am to be available to do what needs to be done that I’m better at – as necessary.
Being in standby or sleep mode is very taxing.
I can’t start projects because it is likely I’ll get interrupted. I take an inordinately long time to get projects going, and much of that time involves figuring out where I was since last time I was able to put any effort into it. There’s really no point to doing anything new right now, and all my writing projects (ie, PC NETHERWORLD) are too involved to pick up for a short time before the next interruption. It’s just not worth the pain.
I have to be really, really careful with energy expenditure right now. The uncertainty cost me the ability to get to sleep two nights ago, and I didn’t get to sleep until 5am (that’s when dawn and birds are starting up), and then caught almost enough sleep by staying in that bed until almost noon. Which I’m still paying for, two days later, with a lot of time in which I can barely stare at the computer screen.
Ah, the computer
My entertainment and communication device, my MacBook, has been having storage problems. SOMETHING in my usual work/play setup was chewing up space on the internal drive, and the thing announced every couple of days that I was running out of space. I never found out what would happen if I actually ran out of space, and I still have absolutely no idea what is taking most of my space when that occurs, but I discovered an easy fix: restart the computer.
Which worked reasonably well for a while, except that I noticed I was fighting a losing battle: every time I did the restart, the amount of storage freed up was a bit smaller.
Well, we finally reached 2GB. Yup. GIGA bytes. More storage space than the whole world when I was growing up. Probably more storage than it took to get men to the moon.
So I thought I’d reinstall my system software, Yosemite, and clean things up a bit. Only Apple informed me 2GB wasn’t enough to reinstall anything.
So then I thought, well, let’s upgrade to the latest system, High Sierra (closest I’m getting to mountain climbing is Apple systems lately), and start clean. Well, that needed a lot MORE space.
So, trusting to the Time Machine backups (remind me not to trust anything any more), I went ahead and erased the internal disk, downloaded HS, and installed it.
You’d think there’d be a few more warnings about knowing what the heck ‘backups’ really means before you do anything.
Yup. I have a nice clean new system – and I can’t find anything over a week old. Not my emails. Not my bookmarks. Not my applications such as Word and Excel. And Scrivener – which I absolutely need to function every day. And Pixelmator. And Dramatica Story Expert, my ace in the hole.
Gone. All gone.
Where? Dunno. Probably retrievable, though I was planning on upgrading both Pixelmator and Scrivener. But not necessarily RIGHT NOW.
I have a vague memory of doing a specific backup of all the applications I use, a while back – but I’ve never tested whether they’ll come back when I want them (they’re in a separate folder, if they exist, on the backup drive I am NOT connecting to my computer until I know what I’m doing.
I can probably get it back, more better and up to date
But not exactly the kind of project you do when you’re going to be interrupted on a random schedule not your own.
Meanwhile, I set up a browser, Mail, and communication with the exterior world (with no history – I have no idea how to get the 976 MB of mail messages on my computer back into sync). I suspect I need to use the Rebuild command – and I’m not doing that until I’m sure I won’t use the NEW mail messages.
I was functional enough to approve the changes the attorney wanted to know about (the sale and moving part of the world didn’t stop just because I screwed up the computer) via phone and email, so we are past attorney review. Phew!
But I’m sitting here daily at minimum capacity, playing nonograms.
Until a shoe drops – and I have to leap into action.
Minor disaster today
I’ve mentioned we’re living in someone else’s house, with someone else’s pale carpeting, white wood, and very light walls. And a new oak flooring laminate in the kitchen and dining room which shows every little fragment of coffee bean that leapt out of the grinder (I don’t drink coffee).
I go to the pantry to load up the bottom of the refrigerator door with more Diet Coke cans (two of those a day are my caffeine drug of choice – more, and I can’t sleep; less, and I can’t function). To notice that the Coke box is sopping wet on the bottom. No, it wasn’t the Coke (I drink the stuff regularly enough so it doesn’t get old). It was the Diet Pepsi we’ve had problems with before (to be fair, the cans in our basement the husband is bringing up so we drink them before we leave are literally ancient, and way past their sell-by date, way past) because they will randomly leak.
I thought soda cans couldn’t DO that, leak. Well, if something is old enough, it is allowed to leak (advance warning for human bodies, as well). And there was a small puddle on the BRAND NEW kitchen flooring we paid a mint for and was just installed less than two months ago and is probably the reason we have a buyer.
Stop. Panic never helps anything.
Clean up the spill. Make sure the floor is dry, and liquid isn’t allowed to pool on the NEW FLOOR. There was no damage. Phew. I put the whole box of Diet Pepsi in the SINK. Then I mentioned it casually when the spouse came in. He’s been working his little tail off pruning bushes that aren’t really ours any more. And the tree he like to keep pruned so we can see out the window. I said, helpfully, “Maybe the new owners will prefer to have that tree screen the neighbors from view.” Deer-in-headlights look from spouse – he hadn’t considered the possibility. Anyhoo.
Keep a jaundiced eye on the rest of the Pepsi in the basement. It has done this before. We are so frugal, but the stuff tastes old, if that makes any sense. Even in a sealed can and a cool basement, it deteriorates with time. You heard that from me.
This is my life for now
And it matters nothing that it is the worst possible life for someone chronically ill and with no energy and no flexibility whatsoever.
We are living as if our lives depended on no one knowing we’re here.
We can stop some of that now, since, in principle and if nothing goes really wrong, no more home viewers will come a’trampling through our home on short notice.
We were very lucky, as we had less than three weeks total of that, although there was a decent amount of traffic (which mysteriously died off completely before and after the 4th of July holiday). Husband thinks it has been just too darned hot for people to be willing to go look at houses. As if that were going to get better in SUMMER in NJ.
Technically, we’re under contract. They don’t have a mortgage approval yet. The house inspector could find aliens living in the attic.
I’m resting as much as I can while waiting for the next ABSOLUTELY REQUIRED thing than ONLY I CAN DO.
Oh, yeah. My assistant will be gone for the next two weeks.
The staging ladies will be coming back for their wares soon – they only lent them for the Open House and a month later – and I won’t be sad to see their delicate (and fake) plants going. We could rent them – but only if we fear the buyer will evaporate and we will have to resume hawking our home to uncaring strangers.
The spouse bought a small kitchen table – which I assembled! – so the wrought-iron ‘bistro table’ could go back outside where it can’t possibly scratch the NEW KITCHEN FLOORING. And promptly cut a slash in the brand new seat cushion (thank God it wasn’t my fault – I’d never hear the end of it), and the darn chairs are very uncomfortable anyway, so no desire to move them to California for meanwhile.
I can’t complain
Just because of my limitations, which make ANY change in routine difficult and fraught, the problems/opportunities/events are all first-world problems of people lucky enough to be able to sell a house and move. Soon, this will all be in the rear-view mirror, a source of amusing anecdotes for a small while (after which I promise never to bring them up again), and I will be slowly and carefully reconstructing my life better someplace where people make my dinner and it has veggies every night.
I fervently hope so, as I’d like to get back to writing NETHERWORLD.
But I realized that not being able to do or think anything was a reaction, not an indication that I’m losing my marbles. I’m overtired, and will be for the foreseeable future, and that’s just going to be the way it is. I have to conserve spoons, because I can’t been in spoon-deficit when the next Call to Action comes along.
Doing my best here. Everything is going along far better than I had any hope I could manage. It will happen. It is even possible it will happen efficiently (as in, getting us into a place without having to find an apartment to rent in between – that’s really amazing).
Pray. Send good wishes. Think, ‘there but for the grace of God…,’ and don’t wonder why I’m erratic. I can’t believe we’re really doing this, but it appears we are.
Thanks to Stencil – I was able to figure out my password and get back to using their ten free images a month wonderful plan.
This would be a lot shorter if I were capable of self-editing right now. Ignore typos. Just for now.
A summary of three lives intertwined in China, and the parents who fought for their daughter. Her life – and theirs – are worth what it cost.
HERE ARE THE WORDS THE CDC HAVE BEEN FORBIDDEN TO USE:
I’m sure my real scientific colleagues, the ones with PhDs and MSs and BSs and technician certificates and experience who have been doing science at the CDC before this miserable year, will find appropriate ways to get around Big Brother.
But they shouldn’t have to.
Yes, I know. Some of it is silly jargon, and sometimes overused, and God knows we scientists are nowhere near perfect.
But we CARE about our fellow humans, even the ones who… and we want them to be as happy, and especially healthy, as possible. And make their own adult choices about the number of children they can care for.
This above kind of nonsense wastes time, doesn’t produce anything, and is downright stupid as well as authoritarian and totalitarian and [insert your favorite here].
Meanwhile, it is my civic duty to make sure these words get their regular workout, so they are ready to serve when sanity returns.
Which it must, eventually.
While I’m at it:
CONGRATULATIONS TO THE GOOD FOLK OF
and the men and women who drove voters to the polls and got their friends and neighbors to register, and forced their fear down just long enough. Each American gets ONE vote, regardless of income or social standing.
Thank you, Founding Fathers. And those who have added the rest of us to the rolls of voters with the constitutional amendments and Supreme Court decisions.
May Doug Jones serve ALL the people of ALABAMA, who will be better off.
And my usual gratitude to Stencil for the ability to produce images for posts.
Forgive me for yelling.
It being Labor Day – and so many of us ME/CFS people remembering how much we used to be able to work, this post seemed especially relevant. Treating a physical illness as mental is bad for two reasons: the physical illness doesn’t get researched, and solved; and the real mental illnesses don’t either.
And my perennial: follow the money. Whose interest is it to keep ME/CFS classified as mental? Those who (mis)treat mental illnesses and have invested their professional careers in it.
This is the second in a three part series of articles looking at related issues. The first article can be found here, and explores Dr Sykes’ reply to the ME Association regarding the Science Media Centre’s recently coverage of new biological evidence in ME/CFS.
This article is going to explore the broader topic of why it matters whether the disease is considered physical or psychological.
Dr Sykes believes that, “Any organisation serious about CFS/ME should not care whether the causes of and treatments for an illness are physical, psychological, or a combination of the two.”
What an extraordinary statement. I would have to argue the opposite: Any organization serious about ME/CFS absolutely must care.
An example outside of ME/CFS
In 1980 the claim was still being made that incest occurred in fewer than one in a million women, and that its impact was not particularly damaging. (Bessel Van der…
View original post 1,405 more words
ALWAYS CELEBRATE MILESTONES
Big day for Pride’s Children! And, to mark the it (and surviving the eclipse), Pride’s Children is $2.99.
A Guest Post on Big Al’s Books and Pals
where I remind readers of the power of fiction:
“Fiction is uniquely positioned to develop and increase empathy, because it provides a way around and under and through the barriers most people put up around their hearts and minds.”
“Reading is just you and the book.”
“Oh, and the author.”
And I give away some of the writer’s secret tricks.
Al gave me space to write about how reading fiction is SPECIAL. Read the post here.
A lovely new review on Amazon
From a reader who took time when she didn’t have it:
“It truly is in the vein of old-school bestsellers; expansive story, larger-than-life characters, and a realistically detailed, interesting world.”
“Once I settled in to the story I was right there with Kary and Andrew. The pace is deliberate, but I was never bored, and in fact, often found myself reading longer than I’d intended. If I’d had the time, I might have read it in one sitting.”
The rest of the review is here.
From Bill Peschel, a book blogger with wide-ranging reading habits
A few tasty bits from an extensive review (I urge you to read the original):
“It deals with the reality of managing an illness that saps your energy and doesn’t leave visible marks, a rising star dealing with the risks of fame on his ability to trust and love, and the morality of his ambitious co-star who trades on her beauty to move up the Hollywood ladder.”
“Kary Ashe does not fit the model of a typical romance heroine…. Like most good writers, she is self-involved, self-protective, but also observant and hard-working.”
““Pride’s Children: Purgatory” reminded me of “Notting Hill,” particularly the problems a private person has moving into a star’s very hot and public orbit. But the resemblance ends there. This is the first book of the trilogy, so the story doesn’t end with the happy couple clenching and wedding bells chiming. That may be too long to wait for some readers, but I don’t mind. I loved submersing myself in Kary and Andrew’s worlds, and look forward to meeting them again.”
Read Bill’s complete review here.
The sale will go on as long as I still feel a bit giddy. Feedback makes me giddy (hint, hint).
GRAB THE READER BY THE THROAT?
The book is fixed; the advertising is not.
This is difficult for me, because in some ways I love my original book description for Pride’s Children: PURGATORY, but it isn’t doing well in sales to strangers. Without strangers finding your book on Amazon and BUYING it, you are essentially dead in the water.
This spring’s ad campaign on Amazon was a wash. I got a decent number of clicks, but far fewer sales once potential readers hit the product page. They’d already read the ad copy, and had seen the cover, so the culprit has to be the next thing in the click-path: the description. Without the KU borrows, it wouldn’t have even been that successful.
The price is also a potential problem, but setting it to 0.99 (I won’t do free – not a good plan with only one book because the question ‘loss leader to what?’ comes up) was not effective, and I’ve tried that several times, and with several promotional newsletters.
The original book description and back cover copy (minus praise):
Here’s the old description, for comparison purposes:
WHAT YOU DO WITH AN OBSESSION COUNTS
I, KARENNA ELIZABETH Ashe, being of sound mind, do… But that’s it, isn’t it? Being here proves I am not of sound mind…”
So begins Book 1 of the Pride’s Children trilogy: Kary immediately regrets the misplaced sense of noblesse oblige which compels her to appear, live on national television—at exorbitant personal cost.
What she cannot anticipate is an entanglement with Hollywood that may destroy her carefully-constructed solitudinarian life.
A contemporary mainstream love story, in the epic tradition of Jane Eyre, and Dorothy L. Sayers’ four-novel bond between Lord Peter Wimsey and Harriet Vane, Pride’s Children starts with a very public chance encounter, and will eventually stretch over three separate continents.
Note: no Selling Paragraph, no Call to Action.
A New Hope
So I’ve gritted my teeth, read tons of books and blogs on the ‘blurb’ – or book description, or many other names – and have decided to go for something which might appeal to a wider class of reader.
And hope that it doesn’t discourage the readers who would have been attracted to the original version – I still want those readers if 1) I can find them, and 2) I can persuade them that I know how to tell a story, and 3) they become convinced THIS story is worth a try.
Indies have a tough time. Readers don’t realize that we have to supply what a traditionally-published author gets with the deal: the book description comes from the publisher’s publicist.
I read bunches of descriptions on Amazon, noting which were big publisher creations. Some of these professionals are very, very good. And make bold, sweeping statements that pre-dispose you to be wowed.
My generation doesn’t self-praise very well.
Without further ado, here is the current contender:
IN A WORLD WHERE INSTANT LOVE IS PRIZED, WHAT IS INTEGRITY WORTH?
Reclusive ex-physician Kary Ashe transmutes personal tragedy into beloved best-selling novels. Actor Andrew O’Connell revels in the enviable status of leading man, with a reputation for perfectionism, an Irish temper, and broken hearts in his wake. Reigning Hollywood princess Bianca Doyle fears she’s already past her peak, and schemes to cement her position in the pantheon with Andrew as mate.
When Kary appears on a national talk show to support a cherished cause, and becomes obsessed by Andrew, movie star, she thinks she’s safe because she will never see him again. While Bianca, watching from far-off LA, knows she brings him her coveted insider rank.
But his next movie is filming near Kary’s Sanctuary, with Bianca as costar. Can Kary risk friendship with this intriguing man? Or will Bianca seduce him and meld her star to his? And will either ultimately satisfy Andrew’s twin lusts for fame and love?
Pride’s Children: PURGATORY is powerful from the very first line. You don’t read PURGATORY: you live it. A deeply psychological experience, with no sleights of hand, from the drivers’ seat right behind the eyeballs of three passionate people who can’t all get what they want. The choices, the devastating decisions, the consequences are all presented with the intimacy of a conscience. Ehrhardt conveys to you the gut-wrenching secrets of a disabled writer at the peak of her powers, an actor waiting in the spot where lightning strikes, and a ruthless woman who sees a golden future if she can but stick the Hollywood landing once and for all, as if you were capable of wearing their skin.
Buy in ebook and print; or download from KU.
When Christianity is getting a bad name from people who call themselves Christian – without bothering to follow Christ – we all live in a hateful, more dangerous world.
Can I call you Frank? This is just pastor to pastor. Feel free to call me Peter. Anyway, I have to say I was flattered when I learned that your Decision America Tour took a detour off the beaten path to call upon us “small community churches.” We are nothing if not small. We seat 30-40 on a good Sunday. And we are a century old fixture of our small community. Most often we are overlooked and overshadowed by mega-churches and politically influential religious voices like your own. We don’t hold a candle to an auditorium filled with the music of a one hundred voice choir led by professional musicians. We probably will never be recognized in any nationally syndicated media. After all, we don’t do anything really “newsworthy.” We just preach the good news of Jesus Christ; love one another the best we can (which sometimes isn’t…
View original post 1,243 more words
GATHER ALL YE FACTORS
I’m trying very hard to make a rational decision on an important medical consideration with a brain that is being kept from thinking by the drug supposedly required to keep my new stents from causing me problems themselves.*
Why? Because the side effects are not only bad, but getting worse daily.
What’s at stake?
Possibly life vs. being a thinking being.
What is a clear statement of the problem?
The drug clopidogrel (generic Plavix) has side effects which are making this writer’s life impossible to live: I can’t think, ergo I can’t write. And since writing is the only thing left in my life that I can do, this is a very big deal. Pain levels are hugely larger: I have acquired a chronic headache, and my pain control meds for CFS don’t work properly. Taking extra over-the-counter drugs is a problem for bleeding and long-term liver damage, and they are not really helping.
They want me to take the clopidogrel for 10 more months at a minimum.
I haven’t had enough energy + brainpower to write fiction since April 8; I started the drug in question (clopidogrel) on March 23 when the previous anti-platelet drug sent me to the ER with a huge BP spike (the BP had been increasing, hockey stick exponentially, for several days at that point).
Chronic health conditions already in place: ME/CFS, twenty-seven years duration; severely limited mobility, due to botched back surgery ten years ago.
Clopidogrel has the side effect, among others, of bleeding; being on it increases my risk of stroke; since I’m also taking Celebrex and OTC NSAIDS, the risks are additive.
Due to the CFS, my body is highly intolerant of most meds; they started two BP meds and a cholesterol lowering statin at the same time as the Effient (anti-platelet); the side effects were ferocious. I dumped them all, except for the Effient, within three weeks of getting the stents.
When switched to clopidogrel, it took about two weeks for the side effects to build (typical for this drug), and three weeks for me to figure that out (typical for this brain on these drugs).
Effient – which raised my blood pressure to high enough levels for me to end up at the ER five weeks after starting it; and Brillinta – which has its own whole host of potential side effects; the doctor said her patients on it complain fiercely of the side effect of shortness of breath.
NOTE: I have not yet tried Brillinta; would probably face a similar decision in whatever time it takes for its side effects to become intolerable.
Fish oil has some anti-platelet effect; I have taken it with no problem in the past.
Resources for making the decision:
Doctor’s recommendations – never stop clopidogrel for any reason. No concern about or help with side effects.
Online scientific papers exploring the drug and the possible complications both of taking it AND of not taking it.
Severely limited human brain – having zombie side effects from said clopidogrel while trying to make a decision.
Vague information in papers of the effectiveness – and dose – of fish oil.
Previous experience making difficult decisions:
While I was doing my PhD in Nuclear Engineering (plasma physics) at the U. Wisconsin-Madison, the only woman in my cohort, I would tell myself that I was under such stress it was impossible to make good decisions; that making a good decision on whether to quit the program and do something else with my life was too important to be made unless I did it well; and that I would have to be finished with the PhD before it would be possible for me to make a decision NOT to finish it. (With the complication that I planned to apply to the astronaut program, and KNEW NASA would never consider me if I dropped out of a PhD program.)
I am happy I finished. I got my chance at NASA, though one of my eyes missed their cutoff, and they had candidates without that limitation to choose from so did not make exceptions. But I made it to Houston, almost made the cutoff, and will always treasure that.
Difficult MEDICAL decision: I was 24. I started running. I developed bursitis in my right hip. Doctors at University of Wisconsin hospitals wanted to operate on my hip. That sounded crazy to me, so I got myself out of there, found an orthopedist who specialized in sports medicine (yeah, me, the total non-athlete), explained I had just started ‘running.’ He told me no guarantees, but built me orthotics – and that was all I needed for running for many years.
Difficult MEDICAL decision: After back surgery in 2007, I couldn’t walk properly, and had a fair amount of pain. The same surgeons who made this possible wanted to operate again, would not guarantee any improvement, only ‘keeping things from deteriorating further,’ and I walked out of there, learned to deal with the pain with yoga and stretching and strengthening exercises (THEN lost weight). In 2014, another round of the same – two more orthopedic surgeons – with the exact same words: ‘less than 50% chance of walking properly, but prevent further deterioration.’ Have not taken them up on their ludicrous offer; if I’m going to put myself through the hell of another 6-12 months recovering from back surgery, it’s going to be for someone who knows what he/she is doing enough to give me MUCH better odds of walking again. I don’t want even more scar tissue back there when I find the right surgeon. I’m not necessarily saying these are GOOD decisions, but they were certainly the right decision for THOSE doctors. I try again periodically, but there is little energy to work with.
Simple: I wanted to go off the anti-platelet drugs, and I wanted to know how much risk I would assume by doing so, if such were known.
This is what is meant by ‘Informed consent.’
[NOTE: this is not my job, calculating risks, but it freaked the cardiologist out even to be asked. You would have thought I was intending to jump out of a plane with no parachute, and I was warned of immediate massive heart attacks and told anecdotes about same in people who were so foolish as to stop their anti-platelet ‘therapy’ and ended up immediately back in the hospital.]
THE DECISION PROCESS
*NOTE: I started this post when I had not made the decisions I’m talking about. WITH ZOMBIE BRAIN.
On inspection, I find it awkward and rough, and have decided NOT to change what I wrote precisely because that is the way most of us have to face these decisions: not in the comfort of hindsight, but right in the middle of the fray, with everything going on, with side effects rampant, and the doctor’s ‘advice’ ringing in our ears – and OFTEN without any actual DATA. The ‘recommendations’ created by a panel of medical experts are only as useful as the specificity they include; if they don’t take into account your gender, age, previous medical condition, and the particular side effects, they are USELESS for you in making an INFORMED DECISION.
So what did I do to acquire all the information to make the best decision?
I read. Probably a hundred scientific papers on:
- Short- and long-term dual anti-platelet therapy (DAPT)
- Anti-platelet drugs
- Drug-eluting stents (DES), especially the second generation ones such as the ones I’ve had implanted
- Discontinuation reasons and side effects
I also read about:
- Cardiac rehab
- Heart attacks in women and differences (heartily recommend Heart Sisters blog)
I consulted my online groups:
- CFS Support group
- CFS Exercise with a heart rate monitor group
- and comments on my blog posts
I read the journals I have been maintaining since stent installation – I have over 60,000 of my own words recorded, side effects and observations and BP readings and drug history. (Okay – 10% of that is the automatic time stamp from Scrivener – everything has one.)
It was done with ZOMBIE BRAIN; my notes are erratic, and all over the place, when I want to find something I thought I had made a copy of.
Most researchers did NOT study the cohort of people who dropped out of their studies on the effectiveness of these drugs and stents. I find that medical malpractice: they had data, didn’t analyze it and/or didn’t publish it.
Once patterns started emerging, I was more focused, and could look for specific papers.
A specific link led the way: Medtronic, in 2013, announced that its new second-generation stent had ‘No Stent Thrombosis Seen When Plavix and Aspirin Stopped Early.‘ They actually STUDIED the people who stopped taking the drug for various reasons; out of a 5000 people study, ONE THOUSAND did so. The conclusion – not much difference in results, as long as the DAPT was maintained for the first month (during which it was hypothesized that the stents hadn’t finished their new inner layer of epithelial cells in the cases that had problems – or were not placed correctly – or some such).
My decision – not to take clopidogrel any more, NOR ANY OTHER ANTI-PLATELET DRUG, after I’d already taken Effient for 5 weeks and clopidogrel for a month after that:
April 25, 2017 at 11:21 PM
Nervous – who wouldn’t be.
TAKING FISH OIL 1200 MG. CAPSULE WITH NIGHT PILLS, INCLUDING BABY ASPIRIN, BUT NOT CLOPIDOGREL.
[Note: fish oil has mild anti-platelet and BP lowering effects – I’ve taken it before with no problems; don’t remember why I stopped. Sympathetic magic?]
From what I had found and read, I expected a small – if any – additional risk factor. In the papers which were against taking this or any risks, the few numbers available often indicated a tiny ABSOLUTE risk increment (1.2% to 1.8%) blown up to look horrible by being quoted, based on the risks of taking the stuff, as a FIFTY PERCENT larger risk [RELATIVE risk: 1.2% plus 50%(1.2%) = 1.8% risk IS a 50% larger risk – the statistics are correct and insignificant and inflammatory – cf. How to Lie with Statistics, a wonderful little book for non-scientists and non-mathematicians.]
I assumed that risk knowingly, and in consultation with my life partner.
THE ANTICLIMAX (of course)
AFTER I had made my agonized (and much discussed with spouse) decision, I found the paper I SHOULD have been pointed to in the manufacturer’s information on the stents in the family of second generation DES called XIENCE, and by the doctors:
ISRN Cardiol. 2013; 2013: 748736.
Published online 2013 Jun 23. doi: 10.1155/2013/748736
Risk Factors for Coronary Drug-Eluting Stent Thrombosis: Influence of Procedural, Patient, Lesion, and Stent Related Factors and Dual Antiplatelet Therapy
Krishnankutty Sudhir, 1 , 2 ,* James B. Hermiller, 3 Joanne M. Ferguson, 1 and Charles A. Simonton 1
NOTE THAT THE VERY TITLE MAKES IT UNLIKELY TO COME UP IN CASUAL SEARCHES. Title doesn’t even mention the brand of stents, nor does the title imply there will be far-reaching recommendations at the end about DAPT.
The relevant parts of the conclusions (ST is stent thrombosis, literally, the stent clogging up, a very rare but potentially fatal complication – see Sec. 8 of paper for details):
ST represents a major complication of DES implants, usually leading to either cardiac death or MI. Preclinical studies have shown that inflammation, parastrut fibrin, and endothelial coverage vary between stents, and more biocompatible polymers in newer DES may have improved endothelial coverage and thus less ST. The risk of ST in an individual patient is related to numerous factors that include patient and lesion complexity, suboptimal stent deployment, adherence to and duration of dual antiplatelet therapy, and stent type and design (see Table 1). There is emerging evidence that second-generation stents, particularly XIENCE V, have significantly lower ST rates compared to first generation stents. Various components of the newer DES… may all contribute synergistically to the preclinical and clinical evidence of enhanced safety. …Treatment with DAPT for a year is currently the standard of care for DES, but more potent antiplatelet agents such as prasugrel and ticagrelor may be beneficial in high-risk patients. DAPT interruption appears safe beyond 30 days in standard risk patients and beyond 6 months in an all-comers population that received the XIENCE V DES. The optimal duration of DAPT for DES is unknown; recent data indicate that short-term therapy may well be sufficient for real-world patients treated with XIENCE, a finding that should be systematically confirmed in large-scale randomized controlled trials.
Weasel wording in various places reminds us that these things – stents AND DAPT – are very big business (in 2011, Plavix was the second largest drug in the WORLD, bringing in 9 BILLION dollars for its creator; even now that generics are available, these are still very remunerative drugs), and researchers have to mind their ps and qs until recommendations change for the medical boards – if they ever do.
Bleeding risk due to DAPT not mentioned in this paper, but it is, of course, larger with clopidogrel than without. And one of the main problems of long-term DAPT.
I have NOT changed my decision, but finding this paper – on the very XIENCE stents I have in my arteries – really took a lot of the residual stress (stress is bad for cardiac patients; stress kills) out of my life.
I’m not saying I will not have an ‘adverse effect.’ No one can guarantee that. I’m saying that my INCREASED risk is negligible to zero, and now doesn’t include the component of BLEEDING that is the bane of long-term DAPT, and since I’m also terrified of strokes, and believe I may be at an increase risk of those because of my pain meds, that has ALSO reduced my stress.
For normal people, clopidogrel is out of their systems in 5.5 days. I’m not normal (my liver seems to process things very slowly, possibly why I have so many side effects), but it’s been that long now, and the first thing to go was the back pain, and the exaggeratedly painful flares after exercise (my EIGHT pitiful minutes of cardiac rehab three times a week set off days of unmanageable pain). I still haven’t heard back from the doctor’s office about my request for pain med prescriptions and advice on OTC amount limits. My next appointment is scheduled in three months. I guess I could call back, but maybe I’ll just wait until July. My husband knows what I did.
The brain may be coming back (this latter part of this post is far more coherent, I think) – I had a short period yesterday in which I was able to read my notes about where I am in Chapters 22 and 23 of Pride’s Children: NETHERWORLD, and sketch out a few dialogue exchanges. Rough when I reread them, possibly usable. I hope I was not on clopidogrel long enough to do actual damage.
This is part of me working through my Post-Traumatic Stress – writing and talking about things, and resuming control of my life where possible.
I am STILL grateful to be alive. I am STILL not happy with any of the process.
I would have willingly assumed a reasonable additional risk, as the side effects were escalating, and I had no desire to go through every anti-platelet drug in their arsenal to try the more esoteric ones. But I have the very strong feeling I have assumed NONE.
My thanks to Stencil for providing the ability – and a nice clean interface – to make the graphics I use for many of these posts. I’m using a free account, but would use them in a flash if I needed more than the 10 free images a month.
Keep me stress-free – recommend my fiction.
I couldn’t put a tenth of what I found into this post; please ask any questions you have.
CFS (ME/CFS) in the news
**** PART 1: NON-FICTION – Documentaries, etc. – The Facts ****
Facts – non-fiction books and documentaries – are incredibly important for getting the actual story of what is a major unsolved public health epidemic out.
There have been MANY, MANY books on the ME/CFS crisis – memoirs, Ostler’s Web, books getting out the story of the things which have happened, and how money has been consistently diverted from research in the disease because doctors don’t believe it’s even real.
And there will be many more. It is a very serious subject, and causes untold misery WORLDWIDE. It doesn’t affect only women, and the treatments proposed – such as the whole PACE ‘study’ in the UK (aimed at making sick people exercise in a way which makes them sicker – but saving money for their national health system AND blaming the victims) which has been totally debunked by statisticians as ‘bad science.’
But all of that keeps the reader who doesn’t have CFS OUTSIDE the loop of having the disease.
A new TED talk – more facts
My husband just came in, and told me, all excited, that he had just watched ‘this TED talk on CFS,’ and had I seen it?
He’s lived with me having it for 27+ years, and he still has this enthusiasm when the media give my disease, and the people who live with it, any attention.
I dedicated Pride’s Children: PURGATORY to him – because this man in my life is the reason I can write: now that he’s retired, he’s taken over the paperwork I used to do when he was teaching and had not a minute to spare, paperwork I did because it had to be done (educating the kids, getting them into college, paying for it; taxes; whatever was necessary for the house). Paperwork I did, not well, not efficiently, but until it was done.
He does it now, and it consumes all his time in retirement (because he IS doing it well, and setting things up for the rest of our lives, and dealing with how do you live so your nest egg makes it) – and I get more time to write. Which is good, because the writing and marketing have gotten more complex (market book #1 while writing Book #2 is, for someone like me, excruciatingly close to an oxymoron), and I have gotten older and less mobile and less functional.
But, in many ways, he accepts how I am – but he doesn’t read fiction. He hasn’t read Pride’s Children. That I can tell. And Pride’s Children arranges for you to understand CFS – without making it too hard for you.
So when he came up to mention the TED talk, it was almost new to him.
Jennifer Brea’s TED talk:
Should you watch? Yes. Is there treatment? No; only symptomatic
I asked him if I should watch it (I haven’t yet), and would I learn anything new? He thought a minute, and said no. Which didn’t surprise me. It’s a lovely TED talk, I’m sure, and cost Jennifer Brea an enormous number of spoons to do (Hugh Howey was all aglow on his blog when HE saw it), but there was little to nothing I, who have been living with CFS (okay, politically correct people, ME/CFS) over FIVE TIMES longer than Jennifer, and keep up with in various ways, didn’t already know.
I’m glad she did it, but it was for the general public who watches TED talks, not me.
I’m glad she did it, because it is harder for people to trivialize and marginalize and say it’s a woman’s disease, or hysterical, or all in her head, when the victim is a Princeton-educated Harvard PhD student. Princeton – which has as its motto “In the Nation’s Service,” trains its students to be activists and entrepreneurs – with a social conscience. I don’t want this lovely photogenic young lady to be sick, but since she is, I’m glad her entrepreneurial spirit – and help from her friends at Princeton and Harvard – makes MY disease harder to ignore.
Trust me. It is a huge gift to the world. Most people who watch this talk will be inspired, but they won’t get it – and will move on to the next cause. Whereas I KNOW what this effort must have cost her.
Hugh Howey said, on his blog:
…Another incredible talk came from a woman with myalgic encephalomyelitis, or chronic fatigue syndrome. It was one of the most powerful talks I’ve ever seen. Again, it came with a preamble and a warning. We were not to applaud at any time. Instead, we waved our hands above our heads like we would for someone who was deaf. Any kind of stimulation can be exhausting for someone with ME.
Watching Jennifer speak from her wheelchair, pausing to catch her breath now and then, laboring through both physical and emotional exhaustion, brought this disease to life. More people suffer from ME than MS, and the funding is sparse. A mere $5 spent per patient, compared to thousands per AIDS patient and hundreds per MS patient. Part of the problem with ME is that sufferers simply disappear from view. They crawl into darkness. It is an invisible but pernicious problem.
The other and more ruthless impediment is the shame and humiliation those with ME suffer as they are told there’s nothing wrong with them, that it’s all in their head, that they should just overcome the disease with a force of will. Because we do not yet fully understand ME, doctors look to psychological explanations. Jennifer tells us that it’s far better to say “We don’t know.” But the suffering is real. Jennifer will pay a heavy cost for traveling here from Boston, but she gives a face and a voice to the disease. It was a courageous display that brought me to tears…
But that enthusiasm hasn’t translated to something I can see. Yet?
I wrote to him in a comment:
Other huge efforts from people with CFS:
Laura Hillenbrand showed what could be done by first writing Seabiscuit, and then writing Unbroken – narrative non-fiction (not about CFS, but written by someone WITH CFS). It was amazing work, done over MANY years, by someone with NO energy.
Jen Brea ALSO was just featured for a documentary she worked hard on at Sundance which used to be titled ‘Canary in a Coal Mine’ (to indicate that what we don’t know about this illness and similar ones may be critical for more than just its victims) and has been retitled ‘Unrest.’ Again, kudos to this wonderful young lady for the effort, skills, and entrepreneurship which led to a prestigious documentary featured at a major film festival.
**** PART 2 – FICTION: BETTER than facts for developing empathy ****
The novel which lets you experience CFS from the inside is already written. It is called Pride’s Children.
Fiction – the kind I write – will make you FEEL as if you have CFS yourself. Without that being the main aim of the novel. You will still have to live, cope, and aspire to love – while ill.
Fiction gets under your skin.As I keep emphasizing:
Fiction gets around the barriers people put up to protect their hearts and minds.
From feeling too much. From really ‘getting’ it, and feeling its devastation PERSONALLY.
I started writing what I hope will be the definitive treatment in FICTION – in 2000.
Slowly, painstakingly, with a huge commitment to learning to write.I published the first third of the story in a mainstream novel in 2015, Pride’s Children: PURGATORY.
How the CFS part of the plot is woven in, from reviews:
Each obstacle the characters must over come is treated with depth and intimacy. It’s not gooey (I hate that) but gritty in an intelligent and classy way… (KR)
Thanks to Quozio for the ability to easily make images of quotes.
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?
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Try not to have overlapping illnesses. It messes up the diagnoses.
- 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.
- 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.
- I am SO glad it is over (or getting there).
Share your own happy experiences in the comments. I’ll listen. Might learn something.
What other people do so easily, would be impossible for me: I’m technically retired now, though the last 25 years of my working life were spent on disability, and I can’t just ‘go out for a walk’ like healthy people my age.
I’ve recently gotten to the place where I can walk more, but it isn’t easy or fast or convenient or unassisted, not like when I used to go out the front door, turn left (or right if I wanted to add an extra bit around the cul-de-sac), and just go, walk wherever I happened to decide, and come back when I’d had some exercise.
But I do something similar when I get on my computer in the mornings, and, while I’m waiting for the morning’s caffeine to decide if there are going to be working brain cells today, I walk around my Internet neighborhood – the sites on my navigation bar – and see what’s up.
Procrastinate first, except for the rare days when there’s something my limited brain can do in the writing department before it is warmed up. I’ve tried – nothing seems to work – so I’ve decided to enjoy my morning walk, do it as efficiently as possible, and not fret about the time wasted/spent. Angst is not helpful, so I don’t bother any more. And I almost never add any new stops to the navigation bar.
HOME COMPUTER: Email first – well Duh!
I check email several times a day, and make sure to deal with what I can asap, as friends write, and several newsletters show up with something new, and often a quick response saves much time and effort later.
Plus, as you can tell, I like to write back. Gets the brain moving and the fingers wiggling.
Sometimes I find responses I needed from missives I’ve sent out to friends or other sources, and know I’ll be able to move something forward.
Occasionally, I have to do something, such as go to the basement and read the numbers on the meter for the solar power system, near the first of the month. They can’t do their paperwork until they have my input, so it gets a high priority.
FIREFOX: First stop on the Internet are my own blogs
I refresh the page, and the thingy in the top right hand corner will tell me if I have visitors, and if they’ve commented. New comments on the blog always get first priority
First stop after 9AM – TPV; if much earlier, do this later
I stop by The Passive Voice for the morning publishing news (and several times more during the day because Passive Guy puts up five or six posts every day). It’s like a visit to a cafe where you get good commentary, and rude people aren’t tolerated. We mostly stay on topics related to publishing and books and such, but David has an interesting mind, and gets stuff from lots of places.
Extra points if posts have a comment at the bottom from our gracious, handsome, and intelligent host – his wry humor and delicate satire are things for joy.
People send him stuff. He is a good host, posting an excerpt – and a link to the original. He is careful not to ruin the original post, while giving you enough to decide if you’re going to visit it.
On most blogs, comments need supervision, and are often not worth the time to scan them; if you don’t read the comments on TPV – and subscribe so you get the late ones – you’re going to miss things. Useful things.
WU – ‘about the craft and business of fiction’
I stop by Writer Unboxed most mornings, at least to get a quick look at the topic and the post’s byline. I skip Flog a Pro – kind of hate the idea of people feeling they can freely trash work they couldn’t produce; mean-spirited and negative some times. Not me. Other bylines or topics I know I won’t respond to from the title or a bit of the post, I skip; otherwise, I read the post.
I consider whether there’s anything I’d like to add to the discussion (there’s usually a question or two at the end of the post as a prompt); I leave my little addition to world literature or my (usually different) take on the subject, read those of other people I recognize, and maybe pop back later; I like posters who bother to come back and join the discussion better, but not all of them have/take the time.
FB – for friends and support groups
You get out what you put in on FB. You are a contributing member of a community – or not. Since one group is a support groups for people I know have extremely limited energy, that group’s members get a pass – some can only afford to post when desperate, and we all respect that.
My group of friends is small, and I don’t sell or proselytize much – that’s not what friends are for. My blog posts automatically on my personal FB page; if there’s anything that the groups might find useful, I cross-post them on the group page. A little goes a long way.
I check out any friend requests – most are obvious spammers – easy to tell (and block permanently) if I take a peek at their page. I’ve even reached the point of checking with the ‘friends in common’ if a friend request is odd and unexpected in any way.
I have no author page – yet. It would be one more thing to maintain – maybe if it seems a good idea later.
CHROME: GR and my British friends
A daily stop, maybe several times, is a nice bunch of people on Goodreads in the UK Kindle group who have made me feel welcome. I’ve read enough British authors in my life to practically qualify on that alone. Occasionally there will be something in my inbox from a GR friend.
I usually save those for later response, but almost always read them right away.
The notifications function provides a quick way to keep track of the threads I comment on or read.
The comics – and Dear Abby
And I’ve had my bit of entertainment for the day; I have them set up for easy refreshing on the Chrome browser, and can update and read and pass on good ones to friends with a few minutes’ effort. Doesn’t that happen to you? A comic just makes you have to send it to a particular friend?
Extra points when the friend later emails back that it was especially appropriate or welcome.
The daily brain puzzles – measuring brain speed (if any)
Usually the last stop on my little trek, I set up a few hard sudokus, maybe do one or two, to gauge whether my brain is starting to work the way I need it to work for writing fiction.
I’m looking for a completion time below seven minutes; and I monitor, with a partial brain, how the math processing is going. I can literally feel it when I’m not tracking – I can still do them most of the time, but they feel like slogging through mud, and take forever. The CFS brain fog is clearly at work here; sometimes it won’t go away. I can work a bit, but it almost isn’t worth it without a brain. I’ll get ten minutes worth of writing done in three hours.
If it makes it to Yahoo, I take a quick scan; other news items will show up in paper (The Economist and other magazines), or someone will boost them on FB, so this is really a desperate measure to find SOMETHING to read before I have to (want to/have to) get to work.
The end of the walk – home again, home again, higglety pen
After a final quick check of the emails, and possibly TPV depending on timing, and a superquick and usually pointless visit to Amazon’s pages that show book sales, I grit my metaphorical teeth and start up Freedom or Anti-Social to block the internet for my available writing time.
Then have chocolate protein shake, and take First Nap (sounds counterproductive, but isn’t – search for ‘mental dialysis’ posts), and when I wake up again and come back to the computer, the writing is sitting there ready to go, I’ve checked out that the whole world is okay until I have time to look again, and I don’t even think about all my friends for hours.
Turning into a routine makes it much more efficient than it used to be.
Keeps me sane.
And connected – the most important part of all. My internet friends are REAL friends. I just maybe don’t really know how tall they are.
Thanks to Stencil for images I can create or edit.
Do you have a morning computer routine?
I’m having a very hard time blogging, commenting, and being a responsible citizen on Facebook right now.
Responsible, because I want to stand by my words online, even if you read them in a month when the craziness is muted. Not gone – the consequences of this election will haunt this nation for years.
Born in California, reared in Mexico City, and living permanently in the States since I went to Seattle U. to finish a college career interrupted by non-student communists shutting down the National Autonomous University of Mexico (UNAM) in 1968-69, I have NEVER seen an election like this one.
Being an INFJ (sliding to an INTP depending on my mood when answering questions – it’s impossible to tell with older people who have adapted the world to themselves with practice), supposedly makes me a peacemaker who, according to one online site,
‘their real passion is to get to the heart of the issue so that people need not be rescued at all.’
‘Egalitarianism and karma are very attractive ideas to INFJs, and they tend to believe that nothing would help the world so much as using love and compassion to soften the hearts of tyrants.’
The problem is I’m censoring myself
I’ve always tried to express my own opinions, and not jump on bandwagons too quickly. I spend time writing comments, re-read before posting, and tone down things which might be taken as fighting words.
The touchstone: not saying anything online I wouldn’t be willing to say in person, with that willingness being tempered by having to achieve something positive, or what is the purpose of talking.
I get snippy occasionally – everyone does – but tend more to pour oil on water than light it up for flames.
But I can’t tell you how many times lately I’m deleting entire comments, leaving challenging statements unchallenged, NOT saying something I really think should be said.
And not just about politics, but on Goodreads, in private FB groups, and even on that bastion of even-handedness and civility, ThePassiveVoice.
And it’s causing me some real discomfort.
Firebrands exhaust me
I’m not the best person for defending or advocating for anything – my energy is too limited.
I have the comments. I WRITE the comments.
And then I delete them, because the climate seems fraught. Everyone’s temper is short. People who claim to be Christian use language Christ would blanch at to impugn someone else’s ancestry.
Racism, sexism, ableism – all are alive and kicking. And punching. And screaming.
I blocked someone on my Facebook page I’ve homeschooled with, and known for twenty years (not close lately, but still).
We used to paper over differences, not mention differences in beliefs where it was not important, strive to find the common ground. Our homeschool group had several Jewish families, at least one Muslim one, ours (the Catholics), and a large collection of mainline and evangelical Protestants – and we coexisted and went on field trips together.
Nuance, thesauri, satire
It’s easier to stay out of the fray.
Indie publishing and traditional publishing long ago developed into separate camps with entirely different belief systems. I read, formed my own opinions, chose the indie camp and don’t regret it.
But, as a writer, I know perfectly well how to slant word choices to make a subtle point. Except that the subtlety seems gone, and everything said seems to lead to an assault on the castle walls.
I hope to hell it’s temporary
And that I won’t be ashamed of anything of said during the proceedings.
But I’m shaken. And unhappy. I’ve always thought it was a great thing to be an American, and that, regardless of problems, this is where I want to live. I’m looking forward to when diversity is even greater in our country, and education serves ALL our kids well, so they have futures.
And now we’re going down a possible black hole. And even the possibility of the black hole has done huge damage with its gravitational force.
Surely we can do better than this.
What to do? What to do?
I’ll gird my loins, go back into the fray, keep attempting to use reason while understanding there is always injustice.
And hope the rest of us are shaken enough to look seriously at ourselves and make sure we’re not making things worse. Platitudes, all, but I intend to try.
This can’t be, as someone said, ‘the end of the American experiment.’
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?
***** Just a few more days until the end of the fall Kindle Countdown deal – 0.99 US, UK *****