The perfect title! The best title. One great title. A pretty good title. Fair to middling title. Good enough for government work title? Starting to turn title? A pretty bad title. The worst title!

As soon as I’m faced with a writing platform, all my brilliant ideas evaporate.

Why yes, I have been away for a good while. And yes, again, I have struggled mightily with how to make a comeback to my odd little blog. I’m fully aware it is a problem I’ve constructed for myself. I love silence and language both. I have a degree in Theater Arts/Dance and while I’m the dancer who speaks, the choreographer who incorporates words, most of my art (and much of my work) to date has been nonverbal.

I recently watched two different versions of Cyrano de Bergerac. Both were wonderful and distinct. Cyrano emphasized devotion and emotion. Cyrano, My Love went to the core of how difficult it is to express our feelings without a layer of protection, some distance — a mask, a messenger, an actor, a poet. That’s my quick take, at least.

Ironically, I can not articulate at this time how the Cyranos helped me better understand my social awkwardness and the role played by my “childhood gift” of being able to quietly entertain myself. Mon panache!

No, there is no theme here; no flow. I’m making my way back to posting. You’re on your own.

Is there a home COVID-19 test for the disabled? You know, one in which a disabled person is no worse for wear after completing all the fine-motor work and has not been brought to tears even once over the eternity it takes to wrangle all the parts while trying to follow the badly laid out instructional insert of this rapid antigen test?

I was once a biochemistry major. And I’ve worked in labs. Big part of why I left science: hated doing dishes.* Also, asthma and animal testing and depression. Plus, I needed to dance. (Dance and asthma is a whole other kettle of fish.) Meanwhile, though it was years ago and not my true calling after all, my lab experience should help me make short work of this rapid antigen test, according to my many-years spouse.

Loveofmylifeguy tested negative!❤️

Face of black chug dog with with eyes shut tight. Watercolor effects on photo.
Draymond will be having major knee surgery February 2nd!

I like counting in German. I like counting; have since I can remember. Started counting in German several years ago when still working but getting sick and external distractions were becoming problematic.

Today I said the word achtzig (“eighty” in German) in my head and aloud, and it sounded wrong to me. Just wrong. Later, it sounded just fine. I’ve experienced this phenomenon a few times. Usually, a migraine ensues. Most embarrassing instance was when a company member came in to rehearsal, fresh from ballet class, ecstatic about fondu and I shot her down, as the word did not sound at all correct to me right then. So very sorry, D!

As I return to a state of being in which I can not only read but also write complete sentences, I have faith I’ll be able to finish my infusion clinic series, among other things. Thank you for reading! I hope you’ll continue to check in.

Speaking of infusion … I am an anomaly! (A medical anomaly you do not want to be!) As you may recall, I was very excited for the upgrade in biologics** last autumn. However, I had a rather serious and unusual reaction to the new drug in October. I will write about it separately. I’m over the worst; still recovering.

“Full recovery” is not going back in time and reclaiming your health just as it was before the accident or surgery or calamity.

Spoiler alert: I had a brain scan in December and no red flags. In fact, no flags of any color. Entirely flag-free. Such a relief!

We seem to live in a time of superlatives. It’s the worst! (Although I’m going for ironic humor with that last statement, in some cases, especially those related to climate change and natural disasters, it’s true.) We’re bombarded with reports of unprecedented this and that. Progress or the road to oblivion? Time will tell. Meanwhile, you can only do your best! And hey, your best is good enough! Great! So my pretty good is, what, untreated cow manure?

I suppose I could sum up the last several years as various adventures in medical diagnoses and care, from traumatic to life-saving and life-affirming, dotted with occasional brushes with death. Surprising, yet spot on in retrospect, is the discovery that I am neurodivergent.

Divergent. Medical anomaly. Zebra.

I am a freak! Hear me quietly roar!

Photo of graffiti on concrete in desert artistically warped. A white painted frame is inset, suggesting a picture within a picture.
Strata by DÅL|é from an original photograph by Jeff Hartzer

*Undergraduate chemistry students generate a lot of “dirty dishes,” beakers, flasks, etc. Work-study students like me worked out which residue was what and “washed” the glassware in poorly ventilated closets. It was the early 1980s. It was dreadful.

**Very simply put, biologics (biologic pharmaceuticals) are those made from living organisms and/or containing parts thereof (e.g. amoebae, proteins) as opposed to wholly synthesized drugs. Biologics are all the rage in cancer and autoimmune disease treatment, as well as those mRNA vaccines of late, among others. My October surprise (no names will I give) is in a class of biologic drugs called CD20-directed cytolytic antibodies. And now you know.

Tales From the Infusion Clinic: Out of Context

Part 3 of Sound of Fury is in the final stages. Meanwhile, here’s this.

“So you said, ‘Sorry, but I’m not licking anyone!’”

Their giggles grew into laughter as the receptionist on the phone and the colleague to her right saw my bemused self on the other side of the plexiglas. For 3 years I’ve checked in at the Rheumatology side of this elongated desk* once a month for Infusion with J, the receptionist who just spoke that fabulous line above through her headset. For the last 2.5 years we’ve only seen each other masked. I feel familiar with her voice, eyes, hairstyles, humor.

“Right! I don’t blame you!”

J motioned that she’d be right with me and would explain everything as she said into her headset,

“I mean, sometimes tragedy just can’t be avoided.”

Then she looked at me, then at her colleague, smiled, listened, and … burst out laughing. I enjoyed seeing J in high spirits. She’s always been an honest and efficient part of my team at Rheumatology and I look forward to seeing her. There have been times I’ve approached the desk just after someone has been discourteous to J, if not also disrespectful, and I sense it’s probably for something beyond her control and she’ll wave it off with a Well, I don’t know what he thought I could do about that? or Some people just — or {sigh} and then greets me with a smile.

Sometimes we patients are justified in our anxieties and rages. (That’s no excuse for abuse!**) Sometimes receptionists can not only not be part of the solution, but also contribute to the problem. Especially for a sick person in crisis. These receptionists feel they are gatekeepers for their bosses, the docs, rather more than they are part of the team that serves the patients. A great receptionist like J knows how to balance the two interests with aplomb. In most cases. Can’t please everybody, of course.

Surreal image of hot air balloons, miniaturized, seemingly floating in a giant glass of water with a droplet flowing up against gravity.
Falling Up by DÅL|é

Change is afoot! I had high hopes for this anti-lupus drug I’ve been infusing monthly for 3 years now. I’ve had high hopes for treatments in the 4 years before that. But … We gave it time. More than we planned, should it fail to elicit the desired results. Next up, while also a biologic, is a considerable step up in immune system wrangling, designed to aggressively address all 3 of my autoimmune diseases. Sort of. Close enough for government work! as my Uncle Tom used to say.

My rheumatologist, Dr. K, and I were first thwarted by covid19. Then by organ damage/cancer scares. (Benign!)*** Then Dr. K got sick.

Soon after the start of 2022, I heard Dr. K had just gone on indefinite medical leave. Rumors and dates of her return came and went. Finally, in late July, I saw Dr. T, who joined the practice a year ago, I think. He’s “young” and exuberant and pretty excited about my rare disease and somewhat unusual autoimmune disease profile. I like the geeks, as long as they’re caring as well, which he seems to be. Good thing, as Dr. T told me he is now my rheumatologist, as Dr. K is officially not coming back.

So, it’s serious. I truly wish the best for Dr. K. I’ve missed seeing her these last several months. I so hope this decision and what follows work out in the best possible way for her!

“I learned a long time ago the wisest thing I can do is be on my own side.” Maya Angelou
From Word Porn

Dr. T also claimed he read through my chart prior to my appointment (Wow!) and that he was going to start work on getting insurance to approve the biologic no. 2, the one Dr. K and I discussed. Promising. Scary. With a very different infusion schedule.

I was already scheduled to receive my monthly infusion the following week. Good thing, too, considering my insurance took a full month to give the ok. It appears my memorable check-in with J marks my last infusion of my first biologic!

Speaking of which … J explained that the person on the line had rescued two tiny kittens. Despite rescuer’s best efforts, one kitten died. Rescuer was relaying to J info/advice received from Humane Society expert, who pointed out (more than once, apparently) that mama cats lick the anuses of their young to stimulate bowel movement and keep it all clean down there. Thus, prompting the protestation against licking anyone. And the wholehearted agreement of same sentiment by our lovely J.

I’m right there with them! Maybe a warm towelette?

I’m so grateful that I’ve had these years with Dr. K! After that last infusion I cried about not being able to take this next step with her, as planned. I’m truly thankful I can take it now with a new doctor and the same support team I’ve come to know and trust. Even though they’re not licking anyone! Not even to save a fragile life!

Spotlight on mutant cartoon duck: spiky mohawk, piercings, dog collar, metal plating wing, snake head on tail. “Likes to chew on pencils during meetings. Can walk through walls.”
One of my many very fine ducks, courtesy of ClusterDuck!!

September has become a difficult month for me, with occasions to dwell on the passing of a few loved ones. But this has been the second extraordinary August in a row! Last year’s was all about the most stressful business property sale we could have never imagined, intermixed with adopting a marvelous puppy (Roo!) with a nasty parasitic infection after a beloved dog (Duke!) died at the end of July.

Today, 25 August 2022, is the first anniversary of closing. Out of business, we are. Have been.

This month began with a week of migraines. One day I bent at the waist to get a bottle of water out of the fridge and was overcome with excruciating pain. For the next two weeks I was in varying degrees of debilitating and immobilizing pain and muscle spasms. Then I returned to my normal level of chronic pain, fatigue, etc. I can move! Cook dinner! Think! (With caveats you understand.) Halle-freaking-Berry-lu-jah!

And now the migraines are back, because —? But second biologic approved/authorized and now awaiting scheduling and then maybe wait a few months to make effectiveness known …

Meanwhile, don’t expect my team at rheumatology to lick anyone. They’re very good and professional. They have their limits. Good to maintain boundaries!

Small black and white puppy has nose mere millimeter from backside of slightly taller small adult black dog. Caption reads, “Learning to cue … Back it up, mate!”
Our little Roogele at ≈ 8-9 weeks of age. (Plus Draymond’s backside!)

*Rheumatology shares a long reception desk area with the Pain and Spine Clinic, which makes sense, or would, if they actually coordinated care, but they don’t. The receptionists make good use of their shared space, though.

**😇🐮! That rhymes! But also, prednisone can be an excuse for abuse. Another in my growing list of topics I mean to write about here sometime in the future. But when? I ain’t got no idea!

***I would not make you hunt for benign v malignant cancer determination in the footnotes! Who do you think I am? I will make you wait through much of 2021 and 2022 while I go through the whole process without telling anyone a thing about it, though. Yes, that I will do.

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!)