Hold the Mayo🚩🚩🚩🚩

Artistically altered photo of moon, clouds hanging low over New Mexican wetlands.Moon rising over waters at Bosque del Apache National Wildlife Refuge, one of my favorite places!

PROLOGUE:
While trying to stay afloat the summer heat waves, Doctor Rheumy #5 (number 6, if you count JustSeeANeurologist Guy) declared this here Lupine Lady an Anomaly of the Medical variety and referred Our Strangeness to the Mayo Clinic in Phoenix, Arizona. And I began composing the following. Eventually, the Good People of You Should Not Leave That Out in This Climate of All Places decided against our rendezvous. Nonetheless, change was afoot. (And is now a-neck!) Details on Turning the Corner coming soon, including Not a Miracle Healing by most standards, and Embracing Life after once again having a sudden sit-down with Death takes over a year, a ragtag village, fairy godmother’s wheelchair, and a very special dog named Draymond.


Z: Welcome to Better You Than Us!

A: Oh, hey — hello!

Z: How may we serve you? [Z hands menu to patron A]

A: Oh, um, okay. Yeah… [A speaks while perusing menu.] It’s just that I — Wow, you have that!? Sorry! I apologize. It’s just a really impressive menu! But, I think maybe an order was called in for me?

Z: No need for apologies! Everybody gets overwhelmed when they first step in here. They get confused. Grow lightheaded. Start crying. Faint. Or, some just get really angry. I am so glad you are not one of those angry ones. Uh … or are you?

A: No, not generally angry. Generation removed from free-floating rage. I’m more of a non-squeaky wheel type, trying in my Middle Ages to identify how and when to properly squeak.

Z: Excellent! My name is Zqwjj and I’ll be your waitstaff-helper-guide-person.

A: I’m Auuiy’o, person in need of wait-guidan— or, um, help. I need help. Obviously.

Z: All right! First things first. [Z checks electronic tablet.] We do have a third-party takeout order for you. Still needing insurance review and blood sacrifice, however.

A: ļæ¼Excuse me?!

Z: An Out of the Order (Nary) order of WhatIsWrongWithThisLadyPerson in a thick substrate of Gotta Be (Bloody) Rare was called in for you by Dr. TrulyGivesAShit.

A: I guess that’s what you call the pricey, intense, out-of-state, out-of-network, diagnostic work over— or, uh, workup, absent any and all guarantees for success?

Z: A week’s worth of poking, prodding, visualizing, repeating tests in all the ways, except this time with an air of self-righteousness and importance like you have never known and a very dry sense of … pretty much everything.

A: Surely, I’ll be granted the honor of paying for all that out of pocket, too — with my luck. While basking in the glory of the Sixth Circle of Hell!

Z: Oh … um …?! [Z worriedly checks tablet.] Says here your referral is to the Phoenix, Arizona clinic.

A: As I said, Sixth Circle; nicest one. You don’t offer a workup like that here, do you?

Z: Oh, no, no, no! However, we do cater the often long and soul-crushing waiting periods. You could start with our popular You Call That Accessible? cruditĆ©s with I’m So Confused I Could Cry! dipping sauces.

A: That sounds … interesting.

Z: Are you being patronizing? The kind of patronizing a patron is not meant to be?

A: Sorry! It’s just … I, uh … I’m just not that excited about the whole Rising from the Ashes and Haboobs intensive deal right now. Not like I was.

Z: Ah. So, hold the Mayo?!

A: Yes, please.

Z: Sweet! Never had the opportunity to say that before! Professionally, I mean. [Z checks tablet.] Hmm… I see you have a long history of trauma and depression, and a complex medical profile, multiple autoimmune diseases (one rare), neurodivergent, lack of family support — lack of family, really —

A: Meaning?

Z: The Mayo may well hold itself.

A: What?!

Z: Even though there’s considerable evidence associating trauma, particularly ACEs (adverse childhood events), with autoimmune diseases — plus the fact that (worsening) depression is understandably common among those with autoimmune diseases — Mayo gets freaked out, if you will, by ongoing depression in cases like yours.

A: Anomalous rheumatology cases?

Z: Uh huh. Sure.

A: Rheumatological and apparently related conditions that overwhelmingly affect women and are therefore historically understudied, narrowly defined, and the sufferers maligned?

Z: As you said, ā€œpaternalistic.ā€

ļæ¼A: Did I? So … in cases of confusing, inconsistent test results and findings, blame the witches, oops, women as hysterical/borderline/whatever? Definitely do not find fault with the limits of current medical understanding?

Z: You’ve been misjudged before.

A: Last month I was told I was an entire medical practice’s one and only red flag. 1 out of 675. My occasional need for one particular type of legal medication is a stain on their otherwise spotless reputation.

Z: Ouch.

A: Been their patient for 9 years.

Z: Ah. May I suggest our Stir the Pot starter? Good for breaking out of stagnation.

A: No. Thanks. Actually, I think I’m ready to order my main course of action, now that Mayo’s off the table.

Z: Never good to leave the Mayo out on the table. [Z readies tablet for A’s order.] Now, what would you like?

A: [A reads from menu] Okay, I’d like an order of General Improvement, please, with greater ease of movement, no vertigo, clarity of mind, more stamina, normal digestive functioning, and significant reduction in pain.

Z: Well, I like the confidence, but …

A: Oh! And, an Abatement of Fear. On the side. [A closes menu.]

Z: [Tablet beeps and clicks briefly in Z’s hands.] Ah, yes, there are some, shall we say, compatibility issues with your current condition and that ask. Unless you want to start tithing? [Z looks at A who shows disapproval in no uncertain terms.] That’ll be a NO. Well, I’m sorry to say you’ve confused our General Improvement offering with our Full Remission special. But, from what I see here, I think an unassuming portion of General Improvement is a very good choice for you at this time.

A: Okay. What comes with that?

Z: You get your choice of greater ease of movement, reduced vertigo, and sporadic clarity of mind — OR — increased stamina, normal digestive function with rare, epic failures for no discernible reasons, and dizziness, no vertigo. Instead of reduction in pain, both choices come with better pain management. Served on a panorama of changing seasons or layered with an ever-evolving sense of peace with a series of devastating losses.

A: I see. Well, they’re both tempting, but I’ll go with the ease of movement/clarity of mind option with better pain management, layered with sense of peace stuff. And may I still have a side of Abatement of Fear?

Z: Yes, great choice! What flavor of Fear Abatement would you like? Milquetoast? Vague? Distinct? BlackWoman? HolyShit? Psychopath?

A: Distinct, please.

Z: Very nice. Now, how about a starter? OurPieInTheSkyHighHopes are popular.

A: No, thank you. Had it. That mix of sticky, sweet promise followed by enduring, bitter emptiness does not agree with me at all!

Z: Oh. [Z consults tablet.] Oh, right! My apologies! Of course, … That starter is not recommended for persons with Lupus.

A: Yup. Makes sense.

Z: For the Chronically Lupine, especially when ordering from our limited optimism menus, Hope Slivers and Cloud Linings, we usually recommend our Relativity Disclaimer starter, served with a delightful Cliché Blocker salsa.

A: Tell me about that.

Z: Our Relativity Disclaimer enhances the idiosyncratic nature of your main course, in this case, General Improvement. It’s all about how you feel now and not next week or last year. It’s not about you compared to someone else or somebody else’s idea of you.

A: Should I take that personally?

Z: Absolutely! It’s a bespoke savory starter. The ClichĆ© Blocker salsa ranges from a mild, passive-aggressive, guess you mean well, to a hot, offensive, burn it all the fuck down. Medium is a spicy, assertive, be real or shut up.

A: Spicy, it is!

Z: Excellent! And for dessert? May I suggest a modest serving of our house specialty, Self-Acceptance, topped off with our renowned self-esteem boost, Is This Self-Love?

A: Oooh, I’ve always wanted to try that! But, I’ve heard it’s very rich.

Z: Oh, no, not really. You’ll be pleasantly surprised at how well Self-Acceptance complements General Improvement! Admittedly, Self-Acceptance can be difficult to digest, especially in combination with selections from our Stagnation and Decline menus. But for the disabled, especially the dynamically disabled like yourself, Self-Acceptance is often described as light and refreshing. Also fleeting, for many. You could probably indulge daily, if you wanted. Best part: Just save whatever you can’t finish for another time. It never goes bad.

A: Self-Acceptance never goes bad? No matter what?!

Z: Think about it.

A: What about the folks who claim it can have an enduring aftertaste?

Z: Consider the source.

A: Privileged, healthy, able-bodied people who perceive chronic illness and disability as threats to their worldview? Oh …

Z: So, that’s an unassuming order of General Improvement, with greater ease of movement, decreased vertigo, and sporadic clarity of mind, plus better pain management. For your side, a distinct Abatement of Fear. For starter, Relativity Disclaimer with spicy ClichĆ© Blocker. And for dessert, Self-Acceptance, with a self-esteem boost of Is This Self-Love? Anything else?

A: Hold the Mayo.

Z: Done. Expires 6 months after issued. If properly stored, that is. Just FYI.

A: Noted.

Z: So, proceed?

A: Yes, let’s move on. Thank you!

Z: My pleasure! And soon, yours, too!

Mayo Clinic logo with tag line, ā€œYou know where to go.ā€
Hey! Shouldn’t you tell me where? ā€˜Cause I don’t know!

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 ā€œdidst dothā€ 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 ā€œsuicide diseaseā€ 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, ā€œWe have nothing to fear but fear itself,ā€ 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 ā€œGod old fearā€ 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 ā€œtickledā€ 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 ā€œjust a few easy stepsā€ 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 PeƱo did not know the meaning of the word sorry. Due to her being a dog!