Absolute right to tell doctor NO

DOES NOT APPLY TO PUBLIC HEALTH EMERGENCIES

YOUR BODY, YOUR LIFE

Even if you’re wrong.

I had a surgeon, the other day, refuse to do a minor procedure – WITHOUT EVEN MEETING ME – after talking to the nurse practitioner who examined me, because their ‘guidelines’ stated another procedure HAD TO BE DONE FIRST to rule something out.

Now before anyone gets all worried, it is a minor procedure which would improve my life significantly.

I didn’t say no – I asked for statistics.

Was told they had guidelines.

It is my very real experience in previous cases that ‘guidelines’ are often years out of date, because, as one doctor told me, “It takes time for the research to be incorporated into the guidelines.” Lots of time. A decade and a half in the previous case.

But even that is a red herring

I don’t know what the statistics are in this case, but I’m guessing MOST of the ruling-out procedures are unnecessary. As in, don’t discover anything that needs being attended to in the majority of cases.

In the case of normal reasonably-healthy people, going through a ruling-out procedure is a minor inconvenience, the loss of a day or two of their time, and an allowable use of their medical leave (if they’re working).

FOR DISABLED PEOPLE WITH NO ENERGY, EVERY procedure

carries risks and an amazingly high load of days lost and physical inconvenience, minor and major misery, time, calling in of favors, arranging…

You name it.

And it is very reasonable to 1) ask if something is STRICTLY necessary, and 2) supported by research and statistics which show the procedure is worth the enormous effort it costs that disabled person.

If a restaurant meal is $50 for one person, and $50,000 for another, it is reasonable to ask first whether the second person wishes to pay that much (this is what prices on menus are for, among other things).

Not taking that into account in medical procedures is the equivalent of saying, “If you have to ask, you can’t afford it.”

So you can’t eat it, even if you’re hungry.

The ADA Factsheet states:

The ADA requires that health care entities provide full and equal access for people with disabilities.

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This can be done through:

• Reasonable Modifications of Policies, Practices, and Procedures. Adjusting policies, practices, and procedures, if needed, to provide goods, services, facilities, privileges, advantages, or accommodations.

At the end of the fact sheet there is a feedback form. Where it asks Is the information useful to you? I checked NO.

Where asked How could the usefulness be improved? I answered:

“Reasonable modifications (or changes) to policies, practices, and procedures” does not address RECOMMENDED procedures used to RULE OUT a possibility, when it isn’t a strict requirement, would be much more difficult for the disabled person to satisfy than for a normal healthy person, and is not wanted by the disabled patient – who understands but does not consent to the recommended procedure, and is thus prevented from having a service they DO need and want.

Where asked What are the most important changes we could make? I answered:

Directly address the fact that, for disabled people, things can be MUCH more difficult to do because of the disability itself (which in my case includes very little energy in a day), and it is not fair to insist they meet the same RECOMMENDED but not STRICTLY NECESSARY requirements an able person is presented with.

And where asked What other factsheets do you think we should write? I answered:

How to lower the barriers which prevent a disabled person from getting a necessary service/procedure when these barriers are ONEROUS to a disabled person compared with an able person.

Do I expect any help from the ADA people?

Not really.

The wheels of government move slowly in the best of cases, and there will be pushback and talk about ‘lowering standards’ and interfering with ‘recommendations by doctors and medical societies.’

And, more ominously, ‘disabled people not knowing what is good for them.’

Change would likely take longer than it does to update those guidelines they are so fond of, produced by a medical society, 15 years after the research changes, to CYA those who might be sued if they don’t follow ‘standard procedures.’

I’m pretty sure they were not thinking about the EFFECT of the above on a disabled person with limited capacity – just imagining what it would be like for a person like themselves (rarely disabled) to go through the procedure, say, with an emotional support miniature horse (yes, they are specifically included, but might be excluded if not housebroken).

I’m furious because there is no recourse

This is the only version of the medical procedure I need within my medical services system.

It takes me a lot of energy to even write about it here; the actual recommended but not in my estimation strictly necessary pre-requisite to the procedure I need is one that would take over a week of ALL my time and energy to do – and I’m not sure I could manage its requirements anyway.

Finding an alternate to their clinic is beyond my capabilities.

The minor procedure would improve my life immediately but isn’t going to happen.

And I don’t think I’m going to get anywhere with the ‘feedback request’ from my medical providers – thought I may just send them this post.

As the disabled person

I should not have to fight over things like this, but should be asked my preference without having to go through the stress of fighting the surgeon who hasn’t even met me.

I have wasted enough time and energy on this already.

I hope I can continue to manage the problem.

And I wonder exactly what they think ‘informed consent‘ means when I do NOT consent.

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And, if you’re worried, I’m not taking stupid chances – I’m not planning on dying of something preventable.

Why do disabled people have to fight so hard for stupidities like this?

Why isn’t the able world asking how to help?

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Preparation and then things just click?

WHETHER YOU’RE READY OR NOT

And we are so definitely NOT ready.

But the last flooring was installed, the staging ladies have done their thing, and our real estate agent is now our real estate agent (all the advice up front doesn’t count until you sign on the dotted line – at which point all kinds of things start happening, like open houses and a lock box on your front door…).

We haven’t recovered from the trip.

We have no place for our stuff – the stuff we need to function as inhabitants of a house (where is my skillet, and how will I make eggs when the gas isn’t reconnected yet?). Which may be a problem, as the period between when you put a house ‘on the market,’ and the time when you are removing your last belongings so you can hand over the keys, is an unknown variable.

I don’t know where anything is

It happens to everyone, but it is especially hard to deal with when you have ME/CFS and daily brain fog: and now it’s far worse because some of the stuff in this house was put away by someone other than me, in a hurry, and without labeling either the box or the corresponding card in my card file. Or worse still, labeled as ‘miscellaneous.’ Aargh!

I located a few of the critical items in very odd places. Not sure I have everything I need, as distinct from the comforts, even yet.

And the dryer vent, taped by the painter, is loose – so I’m not sure I can do laundry (I’m living with the absolute minimum amount of clothes out).

Everything is to be kept tidy

And by ‘tidy’ we mean the way the staging ladies left it (a model home look), or restorable to that condition on short warning, when someone uses the system to ‘book an appointment.’ Aargh!

Meanwhile, we do have to be allowed to eat. Other Half and his good friend are down there trying to reconnect, safely, the gas to the stove.

But the forever home may be available soon

Don’t know exactly when, as they actually have to get everything they asked us for, and decide whether they want us. It is possible for them to reject us.

And it is possible for us to be legally required to leave our ex-home because it belongs to someone else after all these years, before we have a place to land.

It’s a first-world type problem – and I’m not whining – except complicated by my limitations. Residence Inn America for two months? We probably could survive. Rent or buy an RV? Ditto. I think.

So we’re adjusting.

Again.

And I’m marveling that I’m still standing – and taking a nap every chance I get so that I can be coherent for the next crisis event. Such as talking to the people at our brokerage (Vanguard) and being able to satisfy them that I’m me, so we could transfer money. By phone. Since the money has actually been received at the other end by the right people, I did it.

A bit nerve-wracking: you will be asked a series of questions, based on (?) publicly available information, and if you miss one, you’ll have to go the long route of being identified some other way. I’m still chuckling over one question about a boat we owned. And wondering where husband hid it all these years.

I love Vanguard. They get things done, and always have alternatives. I am currently furious at one of our banks for the way they made a decision (which led to the nerve-wracking phone ID). And at the other for the fraught way they handle wire transfers, as if you were a criminal actively trying to circumvent laws. Why is it that the people the laws are intended to protect always feel the brunt, while the people who should be caught and punished never even feel a thing? Being law-abiding is becoming more difficult every day.

There is a For Sale sign on my yard. After 37 years.

Life is interesting, but I’m finding the watershed point was signing those papers, and I’m strangely free.

That and the deposit wire-transfer going through on the same day is… unexpected.

Off to the Gray Havens.

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I didn’t see the wild pineapples

BUT MY CHILDREN DID

And brought back photos. (Not this one.)

There is an oddness to the idea of pineapples in the wild that pleases me.

The modern pineapple is a huge, heavy fruit, supported by a strong stalk. Much like modern melons, watermelons, and papayas, it is hard to believe (okay, impossible) that they are the way we see in the supermarket solely due to evolution.

Evolution produces fruit which attracts animals that eat the fruit and scatter the plants’ seeds, with their poop (fertilizer) somewhat farther away than the plant can throw. In our case, the pineapple, continents away. Shop Rite has pineapples.

Why pineapples, and why now?

Because I have to get back to writing blog posts.

It has been a desert for a while, as all the chores crowded in to vacation and retirement community decision and coming back to a house where everything was in boxes (for the painters) and the staging ladies had transformed the now-sparse contents into a model home.

So many things that HAVE to be done crowded out the optional ones.

The lack of window shades on most windows makes it like living in a fish bowl, only fish are not required to clean their own bowl. It’s nice if they do (by eating the algae, etc.), but that’s asking for perfection. Husband has done marvels with something I didn’t even know existed: temporary paper shades from Amazon which get cut to the right width with scissors, and attached with temporary mounts.

Sleeping has been possible, at least in our bedroom.

Where did THIS pineapple come from?

Stencil – I was looking for an image to write some words on, and the pineapple grabbed me, since I know I saw a picture the kids took on a hike with a wild pineapple growing in a fields (might have been a former Dole plantation).

Today is the first day in a while that something major and required didn’t take over all the energy for the day, but I have gotten out of the habit of putting my thoughts into some kind of order, and I’ve been a total slug all day.

And now we come to the single part.

I check my emails several times a day. Just habit. And hoping there might be an interesting thing to read, or a tidbit of a conversation setting itself up. And one not purely utilitarian and needing an answer, like the email from the woman at the solar company who needs my monthly input to get me the solar energy credits (SRECS) from our installation.

With me ignoring my blogs, and all, I am reduced to input (you don’t get much if you’re not writing) from two people today who saved my brain from the mush: a patron on my Patreon who commented on the new scene available there (the finished scene from Book 2 that I’m serializing). A very favorite patron.

And one of a kind I hadn’t seen in a while: a reader on Wattpad who commented, and is reading the beginning of Pride’s Children which remains there as a sample, as allowed by Amazon’s KDP for books in KU.

With limited promotion for either of these sites, I don’t often get comments. But getting one – from someone discovering my writing for the first time – was a kick in the seat of the pants as to how much I need feedback.

Single project authors can get lost.

Forever.

Stories of authors saved by someone else: John Kennedy Toole, A Confederacy of Dunces, (whose mom insisted on getting his manuscript accepted for publication after he committed suicide in despair – and won the Pulitzer – posthumously). Austin Tappan Wright, Islandia (whose wife typed up his 2400 page manuscript after he died). Even Stephen King, whose wife rescued Carrie from the circular file.

How many more are there out there who spent years, decades on their creations (Tolkien) AND (the more important part) created something of great value?

Rescued by a single act of feedback from a reader?

Computers, word processing software, and the internet now make it possible for writers to create works which are massive and available to many – if the many only look.

As in everything, I fear the great majority of the epics are not great fiction (wouldn’t know, haven’t read them) simply because of Sturgeon’s Law: statistically, they can’t be. But those many projects include a few good ones for some reader somewhere.

Readers keep us writers working. It’s that simple.

Unless the writer has many other sources of support as a writer, the projects can seem hobbies, dilettantism, something to do that is not video games or watching TV.

I thank today’s two readers. It had gotten a bit parched. I’m still here. I love readers.

Must get moving both on writing – and promotion – to find more. I am not unhappy to admit I need them. Even if I claim to write for myself.

Do you ever feel invisible? What gets you out of that state?

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BEAUTIFUL BUT BITTERSWEET

This is the view from the balcony.

The water is SO blue.

We came here for the kids, and it has been a great gift to see our three plus one significant other – for meals, for pool time, for watching Moana last night with them all in a pile like puppies.

But you can probably figure out it isn’t as easy as I would like!

There is a lot of walking (for me).

There is seeing middle son spend seven hours biking up, and then down, 10,000 ft., using enough energy in one day to fuel me for a year.

There is me being unable to walk as far as the ocean – so I haven’t been in it. They say it is warmer than the pools – which have been ‘heated,’ but consistently too cool. And the hot tubs, except for one, late at night, too hot to stay in for very long, with an annoying sign that says the elderly shouldn’t use them! Bollocks to that.

Hawaii apparently doesn’t have all-inclusive resorts, so fooding has been more complicated, and the five of them (four plus husband) have had to go shopping several times.

Why am I complaining?

Because I’m pretty useless for most of the tasks. My chef offspring have been feeding me – we still respect the matriarch enough to keep her around.

But it is mildly annoying.

And I realize how marginal I am when it comes to taking care of myself in a strange place, I who used to take care of three little ones in strange places, more or less (I’ve had ME/CFS since before the third one – who is now the designated driver on the rental car!).

It galls a bit.

I don’t care.

It is wonderful to see their bonds still intact, and strengthened by the pleasure of being together, my far-flung kiddies. This is one of my prime concerns – so many people don’t know their own adult siblings all that well any more.

I had a lovely talk with a woman from Chicago; she said the idea – get together once a year with everyone for a vacation (not an original idea) – was brilliant. I told her SOMEONE has to initiate it – or it won’t happen.

Some families have a beach house of a cabin somewhere – that probably works, but I’ve heard stories of very uncomfortable accommodations, especially as little ones come along. I think using a resort is better.

The other part is making the three of them pick the dates – so they have to work together before – and the place. That way it isn’t foisted on them by Mom and Dad.

I suggested that it NOT be around the holidays – then they’ll be able to go to their in-laws for Christmas – when travel is expensive and complicated.

They picked May. It would have been perfect had we not been right in the middle of putting the house on the market, but even that has had its good side: the painter has repainted our interior while we are not there!

So hello from Maui

And we’re leaving tomorrow. I did note it took me until this morning to wake up feeling adjusted to the time zone.

Oh, well.

Just look at the picture: it’s gorgeous here.

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Reminder: royalties and page reads for Pride’s Children (above right) in May being donated to #MEAction for advocacy for us ME/CFS types – sorely needed. Thanks for all who have participated.

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Boosting Jennie Spotila’s post on dancing

TODAY IS ME AWARENESS DAY

Jennie uses her inability to dance as a metaphor – the entire post (and her blog in general) is always worth reading.

This excerpt chilled me, because we’ve been TOLD, by the NIH (National Institutes for Health) and its director who has been ignoring us for decades, Dr. Francis Collins, that we’ve getting DOUBLE the research money this year that we had last year:

If you see ME, you are watching a disaster advancing before your eyes. It’s not a disaster because the powers that be are simply unaware of it; they know. And it’s not a disaster because ME is a difficult disease to unravel. After all, cancer is a difficult disease to unravel. What can we do about complicated problems? We invest the resources needed to solve them.

ME is an unsolved mystery because the biomedical research enterprise has consistently refused to invest the funding and expertise needed to figure it out.

NIH points out that it has nearly doubled its investment in ME research from 2016 to 2017. But even NIH has admitted that ME funding must be 10 to 20 times its current level. Compared to the need, NIH funding went from .04% of the need in 2016 to .07% of the need in 2017. In other words, double of practically nothing is still practically nothing.

DOUBLE OF NOTHING IS NOTHING. Remember that – it’s an old joke.

Please read her whole, excellent post.

Dancing is a human right

No one should stop you from moving except yourself (and we all had that desire to move as small children, so ask where it went, if it’s gone).

Moving freely in your body, with energy, is a human right (and we’d be attached to rocks if we didn’t have it). Except I can’t any more, and haven’t had that energy in a long time.

I gave my remaining love of dance to my character, Kary, in Pride’s Children, because I know what it is to dance for a short while in my kitchen – something I lost years ago to both the ME/CFS and my back problems – and miss daily.

The end of Chapter 16 in Pride’s Children: PURGATORY (Andrew comes back unexpectedly to pick up a script):

I kind of like this one.

I REALLY miss dancing.

Shall we dance?

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Remember, my royalties for May go to the fight against ignorance and lack of research.

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Thanks again to Stencil, for giving me the free image (the words are mine) of a little girl dancing on the beach. It was perfect.

May 12 – ME/CFS Awareness Day – again

AND AGAIN THERE ISN’T ENOUGH ENERGY TO GO

I am represented by my shoes. Thanks to the people who take the shoes, label them, place them where people stop and look and ask: my shoes represent one of the #MillionsMissing. Me.

I am represented by my fiction. Specifically, ALL my royalties for May 2018 will go to support #MEAction‘s fundraiser – because they are being activists for all of us who have ME/CFS and need medical recognition, research, and training. I’m not delusional, trust me. I’m just sick. Lots of us are. You can ignore us – and make us even more miserable than we already are. But you can’t make us go away and not be sick, and, like AIDS patients before us, we are holding you accountable for this misery – because those wo do nothing when they could are enablers of the misery.

I am represented by my blogs. This one, and Pride’s Children’s blog – where there is a new post! About me learning to use a new marketing book which may help me find the people who will read and love and be waiting for the next book in the trilogy (coming – as fast as I possibly can – this year, or next at the latest). A curious thing (to me) has been a whole bunch of people signing up to follow it and liking the posts – without ever going to that site. I suspect the word ‘marketing’ kicked some bots into gear, but traffic is traffic. It’s difficult for me to market when the people who have left 5* reviews range from young women in their 20s to older men in their 80s. I’m greedy. I want more of you.

I am represented by my Patreon, where at least one lovely patron and I are having very interesting discussions – and the patrons get to read Pride’s Children: NETHERWORLD before anyone else. Curious? Drop by and read the free public posts – and ask yourself if you can REALLY wait another year…

I’m represented by my Facebook page, which is for RL friends and family, and a few extras (it’s not all that exciting, though I have boosted a few posts).

But I’m not represented by me. 😦 Because, as happened today, the spoons went to something silly and necessary that jumped to the top of the To Do list right during one of my four naps, and had to be done that minute. Today’s energy, and tomorrow’s, are used up already. And Sunday, I already know I won’t be able to go sing – there is nothing in the energy bank to allow me to do what I want to do. And I know perfectly well I’ll make myself much worse if I foolishly try. No problem – I can do it, go sing – but the cost will be days of staring at the wall, and I can’t afford them.

Thanks to all who are doing something and going to an event for May 12, ME/CFS Awareness Day – again, since we’re still not getting anywhere, and not only are we still sick, but new ones join us every day. I’ll be there in spirit. Spirits are invisible.

Living in a house for strangers

MY NEW JOB: LIVING WITH WHITE CARPETS

I have acquired a new job: living in a house with white carpets.

We made one of the two choices offered:

1. Sell the house after cleaning it up and fixing the obvious and/or necessary problems, or
2. Update the house as much as possible before putting it on the market.

The easy choice: sell more or less as is

Clean things up.

Touch up all the paint – I still have the cans of good quality Benjamin Moore paint in the basement, and a card file with a paint sample for each, and a list of which rooms are painted/trimmed in that color.

Have the carpets cleaned.

Dejunk.

Add a credit to the house price for new flooring to be chosen by the new owners to their taste – and which it would be so much simpler to have installed when the house is empty between us leaving and them moving in.

Put on market.

Live in your own home, only tidier, until it sells.

The hard and expensive choice: upgrades

The lovely staging ladies we hired and the husband decided to go with alternative #2.

They say (and I hope they are right!) that homes that look dated don’t sell – because the homebuyers of today lack the imagination to see their own possessions in a house decorated by and full of the belongings of – someone else.

Our real estate agent said that the division among buyers was about 50/50, and we should do what we wanted to. That many people who might buy a four bedroom house were locals moving up, and would be buying for the school district and for more room for a growing family.

But she seems excited that the upgrades are being done, and is hopeful they will help sell the house more quickly.

Houses that don’t sell can hold up future plans

Which puts us in an interesting position.

Because we are looking for the best fit in a CCRC (continuing care retirement community), and will go to a lot of trouble to pick a specific one (or small number thereof) which will suit us, and they tend to be close to full capacity, we may be on a waiting list for a while.

This means 1) we need to get on that waiting list asap, and 2) we may be living like gypsies in a caravan, with this one sold, and no place to go for sure, for an indefinite amount of time.

After all our planning!

The supposedly accepted method is to wait until they offer you the place you want at the CCRC of your choice, and THEN put your house on the market and sell it in the typical 60-90 days it takes for the CCRC to have the unit you are offered ready for habitation.

The cart has gotten before the horse

On the theory that even if we were doing the ‘accepted method,’ we might as well get started on the known necessary repairs, and we did – but I never expected them to turn us out of our home, and to be living in a house – sans window coverings because the painter wants them gone and houses show better without them (!) – for an indefinite time, with NO unit offered to us for us to move to.

Not exactly sure how it has happened.

Part of it was the wish to get the house to market during the supposed spring selling time frame (which we will have missed).

Another, other houses staying on the market for a long time.

The third – get other people involved, when the one of the homeowners has very little energy and really needs help – and the juggernaut takes hold and roles on.

And now everything we own is in boxes in the basement – to get it out of the way of the carpet installers (here all day yesterday), the kitchen/dining flooring installers (soon), and the painter (thankfully scheduled while we will be away).

Consequences

We’ll be living, for an indeterminate amount of time (hope it isn’t long), in a house with no shades.

And white carpets.

And white walls.

And everyone agreeing that it is much harder to get stains out of white carpets!

Learn from me: you can’t control the juggernaut, and you keep poking away at the things you can control (changing the carpets) before you realize what you’ve done.

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Corollary to Murphy’s Law: Anything that can go wrong will, and will cause a lot more work.

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Another reminder to do these things sooner rather than later if you want to have any choice in the matter. I can’t imagine doing this ten years from now.

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Sympathy and stories gratefully accepted.

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Think ahead about accessibility in housing

NEVER THOUGHT I’D HAVE TROUBLE WITH STAIRS

And it’s a bit of an exaggeration to think that every single home in the nation should be accessible to people with physical disabilities.

Or is it?

Odd development.

We bought this house when we were both young and childless because it was the ONLY home left in this particular subdivision, the ONLY one with mature trees that the real estate agents showed us, the ONLY one on a quiet cul-de-sac.

I fell in love with the trees.

New construction in New Jersey tends to be on former farmland. That’s because of the tax structure: farmland is encouraged, so vast tracts of land in the Garden State are technically farms, and something is planted often enough to keep this tax designation. Not for me to understand or go into the details of that.

But every once in a while, someone who needs money (probably), maybe as a result of a death in the family and land passing to a younger generation, or need for more McMansions, or whatever, sells a plot of land which is converted to residential and immediately turned into mushrooms: houses dotting the land with no trees around them.

Many of the young urban professionals who then move to the new suburbs are a bit cash-challenged, and they do minimum landscaping, so that years later the developments STILL look like blank canvases – with a few huge houses sticking up, one per acre or so, with a few bushes around the base of each.

Free exercise?

Our house is a split level. With the framed-in attic, it had FIVE levels, joined by FOUR staircases of 7, 7, 7, and 5 steps. We eventually turned that attic level into a fourth bedroom and bath – occupied first by the nanny for the two oldest, then me with the youngest after a couple of problems made it desirable for her and I to sleep together for the first year. After that, the oldest child still at home got the privacy and status of the aerie. Each in turn.

I noticed, even back before kids, that we tended to live on two of the levels – living room/dining room/kitchen plus main bedroom/master bath – and I was already limiting the number of times I’d go down to the basement.

Then I had the first two, and then I got ME/CFS, and things got rapidly worse, and then the third child…

For a healthy young mother who needs lots of exercise, and has a lot of energy, maybe wasting a bunch of it on stairs makes sense. Every time a baby needs changing, a toddler someone to help at the potty, a kid to be reminded of doing homework, a husband or wife to be called to dinner – stairs.

As a nation, we don’t plan ahead for accessibility

Grab bars in showers, clearly helpful for anyone from a young child learning to shower on her own to a mother recovering from a C-section – should be required in every tub/shower enclosure. They aren’t. I have been using the shower door’s towel rack for this for decades, always conscious that it couldn’t take real stress – because it wasn’t designed for that.

Floor plans with hallways wide enough for a wheelchair aren’t built – who could possibly need them?

MOST homes become a trap for the disabled. I can’t tell you the number of days, when the back pain from botched back surgery in 2007 was particularly bad, that I literally crawled up those flights.

And as vertical stability even on good days has become a challenge, how many times I come down one of those short flights backward because one hand holds a few things, while the better right hand grabs the rail – because we have them only on one side of the stairs.

My husband’s mom hard a hard time getting up to the living room as she aged. Was that part of the reason they didn’t come often? I hope not.

Guests from a singing group had the same problem – as we all aged, some had a very hard time (at all the homes in the group), even those four or five steps to a front door became problematic.

So, at a time when some people would like to age in place a little longer, that much-loved home becomes dangerous.

The worst part?

When you go to sell a house, often to much younger people, accessibility features that are too obvious say ‘old’ and ‘dated’ and ‘belongs to someone I don’t want to think about becoming’ – and are literally detriments to a sale.

No one wants to think ahead.

The thought of needing accessibility features some time in the future scares off buyers.

Ours aren’t too obvious – we never installed those grab bars, or added the second handrail on each section of stairs, and don’t have wider hallways (it’s a tract house, lovingly landscaped over the years) or an accessible kitchen.

I’ve never had the energy to insist on making my own home more accessible and convenient for me, since I don’t absolutely have to have a wheelchair yet, and can get around on the bad days by hanging on to things.

Do I want to stay in this house?

We’re past that point now, as I also don’t want to be stuck in this climate, and we don’t need the two extra bedrooms any more, and more and more of my older friends have either moved away or don’t get out much either.

The kids are flown each to a different State of the Union. And as far from each other as possible.

But it’s never really been an option to stay.

We moved in in 1981!

And will move out in 2018.

I don’t have a choice: I have been defeated for a long time. I just didn’t want to admit it. Or rather, I did – at least five years ago – but it’s taken this long (and some life events) to get the husband fully committed to the idea of transitioning into a much smaller apartment in a retirement community with facilities – such as a pool, gym, and daily dinner. And one with, we hope, no accessibility problems.

This time I’m thinking it through, all the way to the possible wheelchair.

There’s a reason old homesteads used to have a suite built on the main floor – the ‘southwest corner’ – in advance of needing it, for a widowed parent or maiden aunt. Good view, warmth – and no stairs.

It’s about time.

Have you thought about accessibility?

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Thanks, as usual, to Stencil for the use of up to ten free graphics a month. It’s been fun to pick an image, think up some words, play with their text features, and insert at the beginning something that ‘goes with’ what the post is about.

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Donating royalties for May 2018 to #MEACTION

May is ME/CFS Awareness Month – the big day is MAY 12th.

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ALL  PRIDE’S CHILDREN:PURGATORY ROYALTIES DONATED TO THE #MEACTION FUNDRAISER FOR MAY 2018.

This is my contribution to the campaign – as a writer.

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Please pop over to Pride’s Children’s blog if you haven’t seen the post (same as the Facebook post) – and consider getting or gifting a copy – this disease has millions of us WORLDWIDE missing from life. We’d love to get back to work!

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Flexibility is worth working through pain

IT IS HARD WORK TO STAY FLEXIBLE

To keep writing

Over this past week, while struggling with the chore of de-junking a house, divesting myself of decades worth of stuff, and getting my singing in, I have been physically exhausted (even though I direct the work, not do it).

The sleep I’ve been getting has been fractured, erratic, odd – and never deep enough.

So, the perfect time in life to take on another major task?

So, of course I did

As I mentioned in the previous post, I started a Patreon page for Pride’s Children; NETHERWORLD, Book 2 in the trilogy (see button on sidebar – I figured out how to have one with a link!!!).

Because, among other things, I realized that the moving tasks are ordinary. And while they need to be done, and every detail has to be supervised by me, and there has been a huge emotional content (you try capturing in a few scrapbooks about twenty years worth of homeschooling three kids!), it wasn’t hard, or tricky, or complicated, or complex, or even challenging.

Ordinary stuff. Every homeschooling family has tons of stuff to dispose of. Every family moving out of a long-time home has a lot of stuff.

But there is no great intelligence or problem-solving ability necessary; in fact, that gets in the way because methodical and utilitarian are the words that describe the process. Just do it. Make a decision: box it for the move, declare it object unnecessary, give it away.

What keeps your brain usable as you get older?

I’m convinced it is USING that brain, not letting it get fuzzy and lazy and go easy.

Starting a page on another platform for promoting your work – that’s complex and challenging. Patreon doesn’t make it particularly easy – I find a lot of applications which are developed for online and Windows use somehow seem to lack menus and a sitemap which works and guides that are more than basic – and I had to keep poking to find even rudimentary details. Such as which is the best way to get your money out (when you get any).

Inexplicably, for Direct Deposit via Stripe,  the payment page gave you a form to fill out which required banking information AND your Social Security number, but which didn’t mention fees.

And for Paypal, it listed some fees which could reduce your take.

Thus giving you the impression that even though Stripe usually costs money, the direct deposit part didn’t. Making it better than Paypal.

Stuff like that. (It’s not true, BTW. But you have to figure it out based on the amount being transferred, by going to the two payment methods’ sites and doing the mental work.)

Digging and logical thinking

It would be nice to have no fees to deposit your money earned into your bank account – Amazon does it, right? Amazon’s fees are probably included in their calculation of their cut – they just don’t break it out.

Doing this kind of mental work, hard, new, in a different and unintuitive (for me) format is worth doing – because it keeps me flexible – for the next thing that comes along.

I’ve found myself getting lackadaisical about learning tasks like how to control the network of TV and Netflix and Amazon video and Youtube – the spouse clicks thousands of times a night while organizing a couple of hours of something to watch. I let him do it, most of the time.

But watching TV is not my profession. Writing is. And I take it seriously for now, and as long as I can do it. And it changes continuously, but no one is going to make it easier for me.

So I charge in, do the work, maintain the flexibility to attempt and conquer the next challenge, and revel in the ability to still master the new.

It’s exhausting – and necessary.

And then there’s all the daily physical exercise

Which keeps the physical pain under some sort of rough control, so I neither take too much additional medication nor sit here in a haze of pain, unable to think.

But physical pain is boring. Not intellectually challenging.

So I’m not talking about it.

But I gotta get my mental ‘steps’ in, and push that to the limit.

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Do you find yourself slacking off when there’s something new to be learned? Are you conscious that you’re passing up opportunities to keep the ol’ cerebrum functioning? Are you making an actual choice?

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Don’t forget to visit the Patreon page  – the first chapter’s on me (pages are public), and you don’t even need to figure out how to create an account, and then have to close it. Feedback welcome, whether or not you will use the platform to read.

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The major stressor and the Gordian knot

SOMETIMES THE SOLUTION IS OUTSIDE THE BOX

Things get tied in knots; sometimes the only solution to a bad marriage is a divorce. But that applies in other situations:

Teacher/student – this teacher has it in for your kid, for whatever reason, and the only way the kid will survive is switching to a different teacher, or a different school.

Parent/child – the child must leave home to get away from a controlling parent OR the parent must eject the nestling which has turned into a cuckoo bird and is eating the family out of house and home.

Boss/employee – leave that job, if you can, before it eats your soul; fire that employee before she sets the factory on fire.

And one I’ve done once before, in many years in the system: if the main stressor in your life is a particular doctor, switch before they stress you into the heart attack they think they’re protecting you from.

The signs were many.

Doctors have different outlooks on life, differing way of using ‘guidelines,’ different bedside manners.

Because change is so hard for me and others with ME/CFS (usually entails MORE doctor visits, transferring of many records, finding the new person, hoping you don’t have an emergency until you’re comfortable with the new one, getting them to read all your paperwork…), we often stay too long with one who ‘at least fills out the Social Security paperwork.’ I don’t need that any more – but worrying about blowing a gasket (ie, stroke) from an occasional blood pressure spike is a sure way to spend your life worrying about your pressure, which RAISES it.

I had reached the point of considering my home BP measuring device an additional stressor, and the taking of the BP another. But I have friends who have had strokes, and it ain’t pretty.

It reached the breaking point a month or so ago when something (I have an idea now, but no proof) led me to have a BP spike DURING my semi-annual cardiologist visit, in their office. ONE measurement. They refused to take it again (to see if it would be coming down), and instead went to full alert.

Full speed ahead, man the torpedoes!

To make a very long story short, after having an abysmal experience with – and stopping after ten pain-filled, zombie-brained, gut-wrenching (lit.) days – another BP med, I switched cardiologists – to the one I just saw (and had met during one of my hospital excursions and noted he was a breath of fresh air then).

He says, not only don’t worry about it, but don’t measure it! He realized the process had become stressful, but that my record of measurements didn’t show a real problem. He suggested, since I need salt to maintain blood volume, and don’t follow a low-salt cardiac diet, that I might have had too much some night (yes, yes, yes! very possible – when I add salt to the occasional popcorn or nuts!). NO ONE had ever told me it could set off a spike.

He actually listened to my difficulties with tolerating meds, said I’d tried most of the first-line ones, and reacted badly, and that the next line of them would likely have even worse side-effects. But that he didn’t think I needed any.

I see him in six months, and the largest stressor on my list (death due to not taking the doctor-prescribed cardiac meds) vamoosed in a puff of smoke. Plus the secondary stress I was also ignoring: going to that office and that doctor. It’s subtle.

Changing was the right thing to do – and a serious object lesson: listen to your stress level. If a doctor constantly puts you on red alert, consider whether this is the best doctor for you. With the other one, I felt every time that I was defending myself from being put on medication I didn’t need.

Such a relief: I agree.

I should have listened. To myself. We’re not all alike; neither are they.

I was just worried the first one would prejudice the second one, and I would then have to go far afield to find… You can always stress yourself out.

And I learned that the salt I need may cause BP spikes. Good to know – will watch that more carefully.

Update on Pi day 2018: almost alive

JUST SURVIVED ANOTHER SH*T STORM

Concerned about occasional blood pressure spikes, I asked the cardiologist to prescribe something with the fewest side effects possible, and was given a prescription for an angiotensin II receptor antagonist (ARB) called Diovan, which was filled with a generic called Valsartan – and I’ve again lost ten days of my life.

After I’ve had a horrible pain and zombie-brain time with it, I start getting more detailed with my research, and find out the Celebrex (my pain med and ONLY other prescription med, which I finally found after trying about thirty other things) and Valsartan (and not only other ARBs, but also ACE inhibitors and betablockers (my old pal from last year, metoprolol – which contributed to last year’s hell, and which I also won’t take again)) are contraindicated because each drug makes the other drug less effective.

I’m getting very annoyed at people who don’t check drug interactions.

Also, people like me, with ME/CFS, are often sensitive to even small doses of meds. Starting on a SMALL dose would make a lot more sense. Maybe they think it was a small dose. I don’t. Ask my husband about my pain-filled week+. I don’t like to spend a long period of time breathing through pain I can’t seem to get control over, while worrying about the extra load in painkillers and what they will do to me and my poor overloaded liver and kidneys.

Just generally annoyed – and farther behind – AGAIN. It gets tiring. And when they don’t even call back after a week after I reported side effects (they said they would), even more.

I halved the dose, then quartered it, then stopped. Five days later, I’m starting to regain control, and my mind worked last night for a couple of hours. Woo hoo!

And yes, I’m aware I’m two days late for Pi Day, and didn’t get any pie. Hope your life is more even-tempered.

And I’m still worried about those occasional spikes. But no med will help if I CAN’T TAKE IT!

New review post on Pride’s Children site

NO RESPECTER OF PERSONS

If you’ve wondered where I’ve been, part of is these last two weeks has been entertaining a guest: Mr. FLU.

And yes, I did get the flu shot back in October (I always get one), and every year as far back as I remember; possibly that’s why the worst effects lasted about a week.

But getting over the whole thing is no picnic. I am on tissues with extra softness – by necessity. I can’t wait for my heart rate, which went up to 100 bpm and stayed there for days during the worst part (normally, for me, around 60-66) is driving me crazy because it is still hanging up there at almost 80. It’s exhausting in itself.

Life and my Universes

Also had lovely houseguests.

And today, by dint of I don’t know what force, I finished a scene I started, according to my notes, on Jan. 21. Way too long, but had only sketchy notes as to what absolutely had to go in it, no rough draft for this one, and no brain. I swear it feels no different, finished, than the ones I have more to go on than a title and several Dramatica appreciations. I even listened to it in the robot voice, and can pronounce myself satisfied (if I ever get there).

New post (with cookies) – thanks, Stencil.

New post at Pride’s Children with a lovely new review that has lifted my spirits.

Said spirits have been on a rollercoaster ride; still trying to figure out how to post about the stress load I’m carrying – and will be until we’ve moved.

Be well.

The Discipline of the Long-Distance Writer

SITTING HERE – RESTARTING MY BRAIN

I am NOT a sports fan, but Philadelphia is around the corner, and I’m pretty sure they put a great amount of very hard work into preparing for their win. As did the other team – so there is that elusive luck quantity about peaking at the right time, and having everything work out when you need it.

BUT: it is not luck that wins most times. It is luck on top of preparation. Most ‘overnight successes’ aren’t. And if you have the great win right out of the starting gate, you still have to do it again – witness the number of debut award-winning novels whose authors can’t repeat the win. And are never heard from again (unless they whine about how hard it is in the pages of The New Yorker.

Everything about Cary Tennis’ aphorism:

The most heroic thing a creative person can do is to live an orderly life so the work can get done.

is true. I don’t get anywhere without hours at the keyboard.

I’m acutely aware that, because I start at such a low level every day, a little thing like the cold that is messing with my mind is enough to render me useless to my chosen profession for both the days when I’m actually sick, and the aftermath days when I wonder where the Mack truck came from, because everything aches.

It’s not the pain that bothers me – lots of people live in pain. It’s that after a certain amount, I can’t think. And I’m way over that amount right now, sitting at my computer trying to think.

Priorities

When you have choices, at least some of the responsibility for what gets done in your life is yours. If you choose to go to the gym regularly, your body may be stronger and more reliable. If you could, but you don’t, the deterioration or lack of strength is partly your fault.

I have to get back to my basement exercises as soon as I can breathe normally, so I don’t get worse.

One thing at a time!

Use what you have in your writing

I was wondering where that extra edge of tension would come from in the scene I’m writing, and it occurred to me that I’m living it.

A common phenomenon for people who live with ME/CFS is the PEM crash. PEM – post-exertional malaise – is another one of those phrases which minimize a real disaster. PEM is really post-exertional exhaustion – a crash that can last for days after you do something more than you could really handle at the time. A crash that is made worse by trying to do things before you’re past it. A crash that is created, somehow, by taking energy out of your muscles with adrenaline.

I don’t know if it’s the adrenaline itself, being very slowly processed by a damaged liver, or if something else in the fragile body system is triggered by the push that precedes the crash. There is no known cure, though fluids, proper nutrition, and LOTS of rest can help.

It is another of those realities which cannot be ignored.

We’re watching the Olympics, and hearing about the athletes pushing through their pain and damage. And about permanent damage that can end an athlete’s career. Sometimes, they can work through the pain; sometimes, if they do the hard rehab work, they can improve their performance. Sometimes they try to ignore it; sometimes that works, or works long enough for them to achieve the next milestone. Hard to know whether they can take the chance – and win in spite of an injury – or whether, this time, it doesn’t matter how much pain they can tolerate in a broken foot, because they still can’t use it right.

I always come back

So far. Eventually.

But I’ve both speeded up (due to experience and practice) and slowed down (due to having been ill longer, and, that favorite of everyone, getting older).

I’ve reached an odd-enough spot that I want to document it, to see how to improve process, if possible, or to just move it along this time.

The immediate projects are competing fiercely

And they are getting done – albeit at a speed that would make a tortoise cry: my parents’ final tax returns (VERY long story) have been in the mail long enough that it’s the IRS’ problem, not mine. Yay! But talk about soul-sucking, useless tasks that teach you nothing you can use in the future.

I have a couple of small typos/errors I want to fix – but will have to re-load all the information about making files for Amazon and CreateSpace into my head, and then learn the new task: how to post a change in a published work. Good to know, not so easy to acquire; I’ll have to take notes, too, or I will forget.

I’m putting off working on putting Too Late, the Pride’s Children prequel, up on Amazon because it is TOO SHORT, and I fear a backlash. From whom? Dunno. But my fertile mind throws up roadblocks whenever it can find them. It would throw up roadblocks if I decided to STOP WRITING and just ENJOY OLD AGE. So it’s no reason to stop.

On the record: I am now more afraid of doing a short story wrong on Amazon and forever ruining my reputation than I am of having gotten my parents’ tax returns wrong and being jailed by the IRS for tax evasion. Easier to laugh at that once I’ve pinned it to a blog post.

The long-term move is back on the horizon

We have to get out of this house. Not because it isn’t lovely here – it is – but because the maintenance is something I can’t help with any more, and it is unreasonable to let the husband do it all, and difficult to find people consistently to do it for you. Plus the complete social isolation of rarely getting out of this room.

But now, following the last days of all four of our parents over the past three years, we have a whole lot more questions to ask and details to worry about that we hadn’t even realized – and won’t be in a position to control at whatever age they happen, because you are not all that functional at that time of life. Way too many things went wrong. Things like nurses in the hospital who won’t make the effort to make sure their patient can HEAR them. Things like ‘hospice’ – a lovely idea from the 70s – having been turned into another Medicare supplier which is farmed out to the lowest bidder, and has failed, dramatically, when most needed. They don’t even have hospices any more – just services dependent on funding and staffing. Once would have been bad luck. Twice is systematic.

So the thought of moving near where at least one of our children might locate permanently (San Francisco), rather than generally to California and taking care of ourselves, has reared its ugly head to mess up the choices. But most people don’t move out of a retirement community once they’re in (except when they can’t pay for it), so choices made now are crucial for the future. When we won’t be in a position to make them for ourselves.

This is what I do when I feel a tiny bit better

I hope being able to think a few things out, and blog about it however lamely, means the cold is on its way out. I’ll still be a dishrag for a couple of days, but the drive to write SOMETHING, and to try to make it coherent, first comes back when I realize I haven’t posted in a while.

And if I can use that idea in the scene in progress, well, I won’t say it’s been worth it, precisely, but I may be able to profit from it anyway.

And here we go. And there’s another bunch of semi-connected thoughts out of the mind and onto the page.

And I’m more terrified than ever of getting the flu!

How’s your winter going?

The Greatest Generation is now gone

AND, UNTIL IT’S YOUR TURN, LIVE

At the beginning of 2014, my children had four living grandparents 90 or over.

As of last week, they have none. Husband’s dad, a good man, at 97, the last of our beloved parents, now knows if there is an afterlife or not. Our parents are missed, and there is nothing anyone can do about it except remember them.

It is sobering to think about now being the matriarch and patriarch of anything: husband and I are both eldest children. My parents did that so well for so long, and I can still remember my grandparents in Mexico doing the same thing. And I am not capable of doing any of what they did, keeping the family together by having everyone over for dinner on Sundays or Mondays, holidays and birthdays. I have been the beneficiary, and can’t pass it on. Our kids are currently in San Francisco, Boulder, and Troy, NY.

I have so many stories, and I have passed them on (ask my kids – I’ve talked their ears off), but I have not the energy to write many of them, not while I’m still writing fiction myself: there are only so many hours in a day I can use, and stories are best transmitted in person.

Making new traditions

I have come up with the idea of us going to a resort once a year, all of us. Not at Christmas or Thanksgiving, but at a convenient time. We can see each other every day, spend time with slow Mom on the beach or in the pool, and then those who can will take advantage of whatever the resort and local area have to offer, and maybe gather for dinner. For that talking part. A way to bring together someone with no energy and descendants with it in abundance. As long as the old folk can travel.

This way, I reason, they can go to the in-laws (when they have them) for holidays without trying to be in two places at once.

We’ll see if it works out; but we can’t maintain the family homestead, an awkward but much loved house with way too much space and maintenance, and too many stairs, just so the small clan can gather at a time when travel is horrible and in a place (suburban central NJ) where you have to go elsewhere to do anything. I have failed the task of ‘everyone is going to Grandma’s house.’

So be it.

At home in Mexico, a gigantic extended family still gathers – but we don’t go.

Now to focus on the two of us

I have to make my tiny daily allotment of energy cover getting out from under the responsibilities, which are becoming overwhelming (mostly for husband), and out of the social isolation which comes from having little energy to go anywhere.

Selling a house and moving, possibly cross-country, and settling in to a retirement community, is non-trivial, but it is only going to get harder. Most people leave it too long, and move in a crisis. I need things I can’t walk to here: a pool, a gym, facilities like a sound studio – and many of the Continuing Care Retirement Communities (CCRCs) have them. We need to find friends – ours here are moving away, or are no longer with us.

And I am aware of how delicate my ability to write is: everything that has come along has stolen days worth of writing because it needed that focus and clarity I can only achieve for a couple of hours a day at most.

The last of the big brain-sucking tasks,

finishing the tax returns for my parents, who were both American citizens even though they lived in Mexico since 1957 (and Pepita when she was a child), was finished yesterday. Daddy’s went with the postman.

I gritted my teeth and filled out Mother’s immediately following, aware that if I set the second task down I would have to learn from scratch all the tasks and arcane instructions – when I could force myself to do it again some time in the future. It was such a huge task (for me – not for a normal human), and consumed so many hours since June 2016 when my sisters gave up and asked me to do it, that I despaired of ever finishing. Mother’s is sitting in a sealed envelope for the postman today.

Each return was four simple pages. Above the surface there is no evidence of the frantic paddling below that reading and filing take, IRS worksheets and arcane bits from processes intended to make it hard for the very rich to take everything with them (ie, hand it over to their rich heirs). To finally end up at the same point for each detour: $0.00 – insert in box X of form 1040.

And on the bottom line: no tax owed. Which is good, because, IIRC, IRS penalties for filing late are some percentage of the tax owed.

I made every mistake possible during my filing of this twice-in-a-lifetime (mine) paperwork, including, yesterday, deleting the just completed return by writing the IRS instructions over it. Don’t tell me I should have let a tax accountant do it. Just believe me that it would have been far worse, and on someone else’s brisk timetable (the horror!).

I can do this stuff: but it takes days’ and days’ worth of all the energy I have.

And I learn nothing that I can use again. I fervently hope.

I’m a writer now, and still working

I plan to finish Pride’s Children, Books 2 and 3. Several nice people have claimed they’re waiting for the rest of the trilogy. As long as life and brain hold out, that’s the plan, and I’m very aware it doesn’t depend on my intentions. I hope God isn’t laughing too hard.

With the latest marvelous review, I have made some new connections on Goodreads, and possibly learned some useful marketing tips.

I despair at where the energy will have to come from to do a better marketing job, but obscurity is the other option, and I’m not happy with that, either.

When I do settle in to the writing, though, the deep pleasure is still there; my beta reader is content and says I haven’t lost it; and I still experience that moment, for each scene, when it all clicks and I know: that’s the way it really happened.

Given that Olympic skiing is off my list of possibilities, I’m glad I have the writing one for the story only I can finish.

There is so much yet to learn

A huge part of life is doing the best I can so that, if they every figure out ME/CFS, and it isn’t too late for me, I will be able to take advantage of the medical research, and maybe write faster. Or go skiing again.

My support group on Facebook has other people like me, and invaluable sustenance (as well as overwhelming loss). We CFS folk have little hope, but losing it all hasn’t happened for me yet.

If I did, I have no idea what I’d do all day.

But we are the oldest generation now, husband and I, and we don’t give up. Yet.

That’s why I’ve been missing from the blogging world. Hope you’ve all been okay.