In the Merry Old Month of May

May is Lupus Awareness Month. May is also Myositis Awareness Month. Mental Health Awareness Month, too.

First is May Day (big to the Germans who raised me), plus our doggie Draymond’s birthday. On the Fourth everyone becomes a Star Wars parodist; May the Fourth be with you! Followed by Cinco de Mayo, on which day far too many Americans pronounce beers something very much like cervezas. Then there’s Mother’s Day, of course, and World Lupus Day a few days after that.

And about two weeks after that is the anniversary of when I took the plunge and bought the domain for this blog with high hopes — or maybe slightly elevated hopes — and various ideas and a plan of sorts. George Floyd’s murder was broadcast two days later, I think.

Black and white photograph of a cliff side. Digital pencil enhance shadows to create appearance of face with prominent nose, dark sunglasses, and neutral expression.
The Hills Have Sunglasses by DÅL|é

So, yeah, May is a busy month for me! I’m having a flare of my type of myositis (the best, most interesting type, obv) in honor of the occasion. I’m not being facetious. Well, I am about dermatomyositis being the best of the muscle-depleting autoimmune diseases, but not so much about the timing of this flare.

Events were set in motion last May from which I have yet to recover. We’d suffered so many losses at the end of 2019 and in 2020 — pets and people — and were enjoying a slight respite early 2021. We adopted a puppy. He chewed his way into our hearts for a month. Then he was stolen on May 5th. Never found. Many folks were supportive and sympathetic. Some, not. Some, really not. Because social media is truly bizarre. It can easily magnify both compassion and cruelty. A double-edged sword type thing. Reminds me of prednisone.

A creamy white puppy sits on a ramp with back to camera and adorable face looking over right shoulder at photographer.
Data, the Great Pyrenees-Saint Bernard puppy who wreaked joy on our lives April of 2021.

The day before that violation, we realized there was no way we could sell our unique, beautiful business property, the erstwhile AirDance ArtSpace, to the guy with the community art center idea, as we had hoped. We had a pretty good offer with a hitch from people wanting to relocate their church. Community didn’t really need another church in our opinion, but … We made a counteroffer, sans hitch. Like you do.

They accepted our counteroffer the day after puppy Data was stolen. Or same day? I don’t have the energy to look it up. Point is, we were locked in by May 6th. Rather long, confusing, ugly story, short; we closed nearly 4 months later on August 25th.

Building with mission style adobe façade surrounded by blame of snow. Under a minimalist clock are silver block letters which read “AIRDANCE ARTSPACE”
The one and only AirDance ArtSpace, November 2000-August 2021

And then there’s Mother’s Day and the ever-so triggering onslaught of ads on what to buy and do — and, I dare say, think and feel — to honor and cherish one’s maternal parent. I’ll try to write about my mother in another post soon. She died in 2004. Yes, I think about her quite a bit, even now, nearly 18 years later. She really hated Mother’s Day.

I have agonized over how to “make a comeback” to my blog. My drafts folder is full of rejects. My new motto is Good Enough. Let go of perfection. And super high standards. And other people’s standards. Not as easy as it may sound to some of you. I feel guilty for things I’ve dreamt about. For questionable acts other people have done over which I’ve had no control. At 59 years of age I still worry about getting/being in trouble!

I’m going to close out this post with a tale of my trip to the infusion clinic. I was a week overdue, which makes a noticeable difference for a drug given monthly. I’ve experienced various delays over the last several months, mostly due to shipping issues. The fallback is prednisone. And that’s a whole other epic saga of tears and compromises.

Closeup of four bright yellow flowers, open in broad cups, sit atop green succulent cactus.
Prickly pear cactus in bloom

To get to the clinic I had to get out of bed, brush my teeth, dress, eat a little something, take meds, get in the car. Monumental achievements! I gave myself pep talks; took short rest breaks between tasks. Balked at the thought of styling my hair. (But the winds of May currently dictate the style for all who dare outside. In other words, Mess is in! It’s good enough! Thanks, Wind!) My thighs barely propelled me up the ramp. By the time I reached the counter, I was done, my hands and shoulders complaining about using the rollator.

Here’s where it comes together. I was signing a form at check-in and asked for the date, just before realizing it was the Fourth. The staff member and I chuckled and said, “The Fourth. May the Fourth be with you!” at the same time, much to the delight of the waiting drug rep. Then I asked the year. And I meant it. Because even as I wrote 2022, my brain, exhausted by the symptoms of my active myositis, lupus, and mental illnesses, was not convinced all those two’s were in the right order. I did not want to get in trouble for putting the wrong date on an official form! Doubly so with medical insurance involved! But did I have the energy to get out my phone? Plus eyeglasses?! I just want to sit down before this nausea gets worse.

Large black dog with some white markings lies on side cuddling toy squirrels under chin. Looks endearingly at camera.
This is Roo, a young dog of many passions. He’s way into these squirrels! He likes them two at a time. Such a Gemini! (First birthday on 13 June)

Infusion helped, by the way. Along with slight uptick in prednisone. And a great deal of sleep, which, of course, led to a blinding migraine, causing me to cancel on a couple folks (or hubster did; literally blinding), which naturally intensified my feelings of guilt — as if I am in control of the many and varied factors that contribute to the courses of my still little understood and largely unpredictable diseases — and now I’m just talking to myself …

Maybe I’m always just talking to myself? Not sure. Whether yes or no, it’ll have to be Good Enough.

Small short-faced black dog considers/noses a small rectangular toy which reads #SPOILED
Draymond celebrates zer fourth birthday with a new squeaky toy! Spoiled is synonymous with deserving in our dear Dray’s dictionary!

Meme-oh-graphics and Meme Mentos

Stuff I’ve collected during my long dark journey of the psyche these last many taciturn months. I will reveal some of my top secret adventures in due course. Meanwhile, some stuff …

Late 2019 and into 2020 death seemed all around us and especially close by. Late 2021 into this year has been something of a sequel. Plus pandemic season 3. (Series 3 for you Brit types?) What to do?! Before, I’ve had things to do and energy with which to do them. But this time, I shut down. It’s not easy finding a new starter for a 59 year old model!

I have rhupus hands! Woohoo! When lupus affects the hands as does rheumatoid arthritis. (No, I did not buy this product.)
At times I still can’t believe how much Nixon administration we retained through Reagan, Bush I, Bush II, Trump. Or more accurately, always there in the shadows, maneuvering, dealing, etc?
Voicemail transcription reads, in part, “Yes, … this is Kathy with the brownie OK honey fear of elections”
What Kathy said was, “Bernalillo [burn-a-Leo] County Bureau of Elections” 😂 Sooo… is my voicemail transcription service racist, still unable to familiarize itself with the Spanish words of my county and my therapist’s office? Gotta say, “brownie OK honey fear of elections” is surreal comedy gold!

Much of the best parts of our fabulous state of New Mexico is ablaze this month of May. None of the fires are truly near us in Albuquerque, but I feel the devastation all the same.

When the going gets tough, the tough get going. Because it’s their time to shine, to get going, do their thing. Right there in the name. They’ve been waiting, the tough have. Laid in supplies. Got the proper tires, presumably. Meanwhile, the tender can just take a break — yes?!

Moon in pale golden light about 2/3 risen over gently sloped hillside, silhouetting desert scrub
March’s Worm Moon rising over the Sandia Mountains. Aka Sleepy Moon, Moon of the Winds, Chaste Moon, Windy Moon and in Southern Hemisphere, Harvest Moon, Corn Moon. Photo by Jeff Hartzer.

I Can’t Even … with down and up and coming attractions

I Can’t Even

I just can’t
Right now

Really, I mean
How

Does anyone
Expect
Me

And
With
What


©️DÁLē
31 De 2021
Bathroom mirror selfie. Reflection of me taking image in which phone obscures all but my shiny forehead and my gray and brown self-inflicted bob!
New ‘do, old phone. Farewell, 2021!

From Me to You in 2022!

Let me explain. No, there is too much. Let me sum up.

Indigo Montoya in The Princess Bride

At the start, I had a plan. Strategy, if you will. But, then, this happened. And then that. Followed by another and another. That. Then that. And that. That and that and that and that and that and … and …

So, I had me a bit of a shutdown, I did. I retreated. I’m ok. Rebooting, in a sense. I am writing about it and will post in time. Here’s what else I have planned for 2022 and My Good Wolf:

Structure!

As in organizational structure of some kind. Working on a menu with categories (i.e.; Lupus, Dogs, Mental Health, Unpopular Opinions, etc) into which posts will be sorted.

More Posts

More of the same: smattering or so of poetry amidst essays and other prose musings by me and my born of pandemic alter-ego, Underlying Conditions Lady.

Art and Fiction

If I hereby promise to publish my new forays into digital art, will that be the motivation I need to work through my Stuff* so that I will, in fact, post said art? ‘Tis the dream! (😇🐮! And I’m promising stories, too!)

And …

Nope. Notgonnadoit. Just leave it right there. That’s already a lot, you know. Yes, but it’s what I really want. And now that I have successfully asked for and received help, it feels doable!❤️**

Two black dogs lie side by side on bed. One is long-limbed, long-bodied, resembling a young German shepherd; the other is much smaller, sleek-coated, stocky pug-Chihuahua mix.
That’s the long and the short of it! (Roo at 6 months, Dray at 3.5 years)

*Thanks, predictive text, that word 💯 needs capitalization right here!

**{😇🐮}x2! Putting some self-love out there! On NYE while listening to celebratory gunfire, no less.

Black and white sleek dog lying belly up on sofa with back legs splayed and one front leg gracefully reaching overhead.
Roo at 6 months of age is both the most graceful and the goofiest of all the many dogs we’ve loved!

Avoidance and Punishment

Content Note: There are curse words in this post. If you’d like a version of this post without curse words, well, Sweetie Pie, you is shit outta luck. There is also a reference to a gruesome self-harm fantasy, toward the end of this overlong piece. Plus a book recommendation and a photo of a super cute dog.

I feel the need to apologize. And with it the need to justify my absence. I know this makes for a bad apology, but I’ve also been thoroughly immersed in the belief that an unexcused absence is … well, you know, inexcusable. So, if one checks out, drops the ball, retreats, doesn’t meet expectations and thus disappoints others and feels bad about it and wants to make it all right, then that personage, that disappointing lump of humanity, should just say, sorry, I let you down, I will try not to do it again, though I might because you never know based on this variable and that, meaning there’s context, but this is about you not me, so goes the rule of best amend making, excepting of course my regret and my reparations and my learning from how all this came to be, but you don’t need to know all that, unless you’re my boss or my teacher or the jury service and need a note from my doctor or, somewhat ironically, you’re my doctor and need at least 24 hours notice and a good excuse or a note from another doctor or I’m going to really have to pay!

I do apologize for that extra-super-fuck-long of a runaway sentence. I should edit that stream of consciousness crap, but I don’t have the energy and I guess I’m just not that sorry, truth be told.

Truth be told. Ha!

I am a much better liar than I profess to be. I’ve said more than once that I’m not a good liar, but that’s, of course, a lie. I do usually get caught with the straight-out lie. Historically, the consequences of my getting caught have at been spectacular and coincidental. But lying by omission, keeping secrets, deflecting, minimizing, etc. —I’ve long done all that quite well. And, of course, lying to myself is where I really shine. Maybe you knew that already. Ok, sorry I wasted your time.

Is it actually possible to waste someone’s time? Time is … a phenomenon, a dimension, a construct … Time is hard to define. Time is not something owned, stored, traded, manipulated, used inappropriately. It is relative and unstoppable. It can’t be stolen. Or replaced. There are no time byproducts. No barrels of toxic time waste buried next to vats of gravity sludge.

I’m sorry. I know I lost you all with that last paragraph. It’s just that I was raised thoroughly steeped in the religion of WasteNot and I’m having a hell of a time giving myself some goddamn, ever-loving slack! I know what I want to get done and what I need to get done and I’m getting more and more accepting — if that’s the right word and I’m just very recently not entirely sure it is — of what I can do, but I don’t know what to do about them not syncing up. My ducks are not all in rows ready for the spooning. I am sinning. Wasting resources. Time. Money. Smarts. Food. Energy. The Venial and Mortal Sins of WasteNot.

And my penance is …?

I’m a Jew raised by ex-Catholics, so I’m entrenched in guilt. And the need to punish myself. I’m not a masochist. Not literally. Ain’t no sexual pleasure involved. In fact, I’ve had me a couple of coital headaches and unholy sheeeiiit do those suck ass! (And not in a good way. No, not at all.)

If only I could quantify my energy into discreet utensil units, then all would be well and there would be no waste. Right? Sporks feel more my speed than spoons. I need at least the illusion of some stabbing power, some targeted selectivity. And the spork is my talisman for my time inside — my 8 days in the mental hospital with chair yoga, music therapy games, crosswords, and no psychotherapy whatsoever.

In sorry, but I just don’t get Spoon Theory for myself. In practice.

For example, I had some trouble walking yesterday, but my trusty Rollator got me both to and from my long-awaited Pulmonology appointment, which was a lot of questions and ordering of tests, which was what I expected. My one big thing for the day complete, I didst doth rest and so didst then perform solely duties as needs must of a less taxing variety and verily not requiring myself to be fully upright and locked in.

Yet today, I can barely get out of bed. Last time this happened I started looking at folding wheelchairs. Wanting a wheelchair brings up so much! Fear, sadness, money concerns, flooring issues, questions, more questions, fear …

Damn, woman! Stop! Ok, first I’m sorry about the “didst doth” stuff. I had fun, though. Second, Spoon Theory is great for many. I just can’t make it work for me. Total spork-less loser. Also, I’m getting a lot of internal backlash for revealing I spent 8 days in a mental hospital — and maybe even more for revealing I did not receive promised care while there — but also for having not yet written about all that which I both very much do and do not want to do.

And I lied about having trouble walking today. Actually, that was last week, when I started writing this here thing.

This week it’s trigeminal neuralgia with migraine plus neck pain and immobility that’s got me down. Way down.

Trigeminal neuralgia, aka facial pain, aka suicide disease.

In addition to every other shitty malady I have, I have to have this goddamn, motherfucking, cocksucking nerve pain with the triggering up the ass nickname of “suicide disease” too?!

(Those are the only swear words I know. In English, that is. Entschuldigung. ¡Lo siento!)

I think this post may be about fear. Have I written about fear before? I’m afraid of repeating myself. I’m also afraid I repeat myself a lot. And yet, not nearly as much as I need to. I’m afraid of not making sense. Of not knowing that I’m not making sense. That no one will tell me that I’m not making sense.

Or that they will and I won’t understand.

My mother used to laughingly say that I was a very smart person with no common sense. She was herself a very smart person. I used to believe that statement of hers was more loving than insulting. Reasonable and accurate. Nah. Sorry, Mom. You were laughing off my trust in myself, my ability to learn from my mistakes, and replacing it with fear that I lacked the basic tools most people have in common and take for granted.

I forgive you, Mom. You were raised on fear. People fed off your fear most of your 60 years.

If you are right now thinking of that FDR line, “We have nothing to fear but fear itself,” please know that I am harboring homicidal feelings for you.

I’m sorry! That’s another lie. Hyperbole-style. That FDR line makes no sense out of context. Look it up. I dare you! However, it has been quoted ad nauseum for decades with no hint to its original context, so that it’s truly no wonder so many jump to it when good old fear comes up for discussion. Or dismissal.

I’m sorry, but autocorrect filled in “God old fear” and that tickled my figurative funny bone.

At one point during my lumbar puncture (aka spinal tap), indescribable nerve pain shot down my left buttock and the full length of my left leg. I alerted the doc, moving only my mouth, eyelids, and all necessary for continued breathing for fear of making it worse. Doc said “tickled” my sciatic nerve. Nope, sorry, tickled is not the appropriate word here!

Fear is useful. Fear keeps people alive. Fright leads to flight or fright. Or freezing. (Sorry, that’s where the rhyme ends in English.) Make a goddamn decision! Now! Do something!

I don’t know what to do and I’m really sorry about that.

Have I chosen to freeze out of fear when it’s really not an f-word situation at all?

I’ve had this here blog for over a year now. Been thinking about it for I don’t know how long before that. I have plans for promoting it. Right after I finish this other task. And then there’s that other stuff I gots to do. Meanwhile, this thing and that thing came up. Far higher priority! Like, obv!

Sorry, but shouldn’t that be ob-v?

Self-promotion is so very hard for me. It’s always been a challenge. Was a easier when I was running an artistic company I started. Then I could promote the rest of the company and share the spotlight with them. I do enjoy receiving recognition for my work. But just me, on my own in the PR spotlight …

Sorry, sorry, sorry. I cannot continue. My internalized mother does not approve of the syntax of that last unfinished sentence of the last paragraph.

Oh, how I do enjoy punishing myself for my perceived transgressions! Probably why my mother has come up in this post, as she was likewise gifted in this realm. And really, truly, that is where I waste my energies the most, convincing myself of my lack of worth as a human being. Hurting myself in various ways — I am a rather creative person, you know (humble brag) — for somehow not deserving what I would not deny those I like the least. I know this sentiment to be true, as I honestly wanted the best, compassionate treatment for he who some might call my worst enemy.

I’m sorry I’m not more prolific with posts. And that I haven’t finished and posted so many others, temporarily lost in the fog of my gray matter. Or maybe lying in wait in a white matter lesion? Sorry, that metaphor doesn’t really work. Or does it? Not demyelinating lesions, by the way. Ruled out MS years ago. Just migraines. Occasionally, reality-bending migraines. Sanity-questioning migraines. Forgot how to tell time migraines. Fantasies of halfway scalping myself and then pulling individual hairs through the gap knowing that wouldn’t stop the migraine probably but it would be one hell of a distraction and might just get close to equaling the agony if only I had the strength and the will to do it migraines.

Oh, and also maybe lupus. Tricky wolf.

I have no excuse. I have every excuse. I tried to read an article or blog post or column or whatever on what brain fog feels like, written by a fellow chronically ill foggy brain-haver while in that unclear cognitive state, but I couldn’t do it. Yup, I was too foggy!

Last week I thought maybe this post would be about burnout, as defined by the most excellent and decidedly feminist book, Burnout: The Secret to Unlocking the Stress Cycle, and I would disclose some past events in which I have only now realized I have not completed the stress cycle. In part, because of lying to myself. And others. By keeping secrets. Out of fear. Not the useful kind.

Anyway … maybe I’ll start that big PR campaign next month, when the big sale I haven’t written about yet is final.

If you are right now thinking about recommending a handy-dandy webinar or webpage or any such thing that will guide me through “just a few easy steps” and then maybe a follow-up task or three, then please know that I’m feeling a return of those homicidal tendencies, as it seems you have not understood at all what I’ve been writing here.

And, for that, I’m not sorry.

Face of black dog, wearing blue, illuminated glasses, and with big, open-mouthed smile.
The glorious Princess Holly Peño did not know the meaning of the word sorry. Due to her being a dog!

If You Make That Face

Hit again and ‘gain
Two-fisted hammered
My face just won’t crack

Made that face long ‘go
And, indeed, it did
It stayed that way

Now my well-made face
At once young and old
Has no home with me

Bring down the hammer
Chips off the old block
Is all I can do

Proof in the pudding
I lack the strength
To destroy myself



Copyright 21 August 2020
Revised 19 April 2021
Closeup of black puppy face with protective cone around head, looking forlorn yet adorable
THAT face is absolutely priceless! (Super Puppy Draymond survived this indignity — I swear!)