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.

Sunday Unfunnies

Content Note/(trigger warning): Among other things, the following post discusses death and grief and includes a brief description of a violent death.

Whelmed, am I. Totally and completely whelmed. More than that. Beyond whelmed. Uber whelmed. Utterly overwhelmed. Which is redundant, technically. (Look it up. I dare you!)

Welcome to Sunday morning thoughts with Underlying Conditions Lady in the midst of another prednisone-mediated lupus(+) flare. Here you’ll find a mixture of to-do lists, pain scales, grief, dogs at play, gratitude, shame, feelings of obligation, feelings of failure, loneliness, word etymologies, questions of science, questions of art, the letters P-T-S and D, and a few audiobook highlights, all in a misty fog, flavored with a soupçon of irritability á la that little bitter pill.

Prednisone, it’s a hell of a drug!*

I’m more than two weeks overdue for my monthly infusion of my DMARD, because of yet another urinary tract infection.* Antibiotics and my Biologic, a sophisticated immune system … modifier(?) … modulator(?) … Wolf tamer (?), do not get along. They’re rather at cross purposes. And this was a kidney infection, in truth. An aggressive affair. You know how colonizers be!

All I want to do is sleep. Which I do. Badly. That’s not really true. I’m working on the sleep thing. It has taken a lifetime and now chronic, debilitating illness (yeah, I said it) and the various resources of the internet to sort out which sleep disorders I do not have, the one I very well may have, the continuing role PTSD plays in my bedtime behaviors, and a commitment to being kind to myself to arrive at this place of lovingly addressing my sleep issues. That last part is the hardest. But you probably guessed that.

The Wolf in predator mode that is a flare of autoimmune disease activity and the common yet somehow extraordinary drug that is prednisone are at odds when it comes to sleep. They’re at odds regarding just about everything, really. Except they both destroy the body from within. They are terrible houseguests, awful to their hosts. No, that’s not it. It’s more like a hostage negotiation. In your home. With a repeat offender. And the only way to achieve any success is with that negotiator you hate, who wrecks your house — every single time — but is still the only one who knows how to keep the offender from stabbing you in the gut repeatedly.

But this post isn’t about having a flare. Or prednisone. Or sleep issues. It’s about … something. Being foggy? Overwhelmed. Needing a break. Ok, wanting a break. I want a guarantee that no more big stressors will hit until, say, after I finish the taxes. Yes, I know that won’t happen. I mean, I won’t even be able to get this post finished and published this sunny Sunday, due to the interruptions and intrusions of Life in the Foggy Brain Lane.

Did that sound whiny? Am I doing it? Am I doing it right?! My psychotherapist is a believer in whining. Moaning, that is. Expressing one’s pain out loud. I totally agree — in theory. For other people. Although I’ve been seeing this therapist for several months, she still feels new. Fresh. I like her a lot. I want to please her — and I know I need to be careful about that impulse, or at least aware of it — but, moaning out loud? Me? I mean, even my autocorrect avoids the word! Meaning … Moving … Morning?

What about … Mourning?

500,000 dead. Well over that. In just under a year of COVID-19 in the US. I correctly predicted the date we hit 150,000. Nailed 250,000. Was within two days of 350,000. Then I stopped that mental “exercise”. Not good for my mental health. And other things occupied my mind. Christmas in the ER. Not long after S moved out. Because her aunt died. Now it’s lonely here again. Then the insurrection was live on television. And Facebook. Reddit. Twitter. The ‘Gram. And then T died all of a sudden. I wanted to hug her mother for a week, but we just talked, masked, over the fence. Texted, a little. That was just a month after Aunt I died. (Not my aunt.) Valentine’s was Aunt P’s first yahrzeit. My Aunt P. But not only mine. I miss her. May 31st will be our dog Duke’s 14th birthday. If he gets there, that is. He’s been a very, very good boy.

This is about loss.

In less than a year five people died on our street. None from COVID-19. Not directly, at least. Three deaths were due to long-standing health problems that probably weren’t being treated as well as should have been due to pandemic conditions and were likewise exacerbated by the stressors of the pandemic and the lack of concern by so many for one’s fellow human being. One person died by an overdose that may have been intentional. And one death was of a man having a mental health crisis. Body cam footage shows he had a knife. The police disarmed him with several gunshots to his body at close range.

A descanso* marks the place up the street where he died. There was a small, peaceful, at times joyous protest there last summer. The cops parked a couple squad cars in the middle of our street, a couple doors down, and hubby and I, masked, watched them standing there, drinking sodas, talking and laughing easily with each other, their torsos heavy with armor and weaponry.

I’ve been dealing with loss all my life. I should have an honorary doctorate or two in loss by now. Except the older I get, the more unsure I feel about what I know. And don’t know. I know I feel a heaviness in our neighborhood. As if all this absence left by these losses and their rippling effects has a weight to it. We can bear this unseen weight, isolated behind masks well enough. For a while, at least. But, dense as it is, this absence is also weightless somehow. Intangible. Just out of reach. It hangs there — like a fog. Yes, time heals. But community is a balm like no other. Funerary rites are important. Displays of remembrance and communal grief. We need follow up, too. Restoration. Good grief. My neighborhood is hurting.

Good grief! I remember being very confused by Charlie Brown when I was a kid. Why was he shouting out grief? Aren’t you supposed to keep that sort of thing quiet, locked within you, gnawing at your joy and sanity slowly over time? And why did he keep playing football with punkster Lucy? Given my so-called best friend at the time told me in all sincerity that I was bound for Hell, I probably should just move on.

My basic thesis of loss has long been thus: Each relationship is unique. Each relationship makes an indelible impact on each party. The more intimate the relationship — for better, worse, both — the more intricate the connections. Death severs that relationship and thereby changes the survivor further. I had an Aunt P. I loved her. She loved me. I love her still. I am forever a person who was deeply affected and influenced by my Aunt P and now I am a person without her. I am grateful. Truly grateful. And I am sad. For the aunts and the many people who loved them. For my neighborhood. For our rabbits.* For my friends who are struggling in various states of isolation. For over half a million COVID-19 deaths here. For I don’t know how many around the world. For the healthy life I thought I would live in middle age. For my darling dog.

I grew up in the foggy Pacific Northwest. There I learned that sometimes it’s okay to drive through fog. But sometimes you are at its ephemeral mercy. You cannot control it. You have to accept its existence and wait for it to dissipate, to let you through. I suppose brain fog is like that. Maybe? Or maybe that’s grief. Or both. A heavy, obscuring blanket of emptiness. Impenetrable, even as you move right through it.

I’m just so sad.

I could use a break. But that’s not how it goes. One has to roll with the punches … adapt in order to survive … yadda yadda. No breaks guaranteed. Fine. In that case, I could use a good house cleaner. Must like dogs!

Black short-faced dog peers out from under bedding encircling her face. — Young Duchess Draymond Pugbelly is all about self-care!

*Appreciation to Rick James and Dave Chappelle! (If you don’t understand that reference, well, I just can’t help you.)

*Autocorrect actually filled in, urinary Tracy infection. Apologies to all Tracy’s out there! Also, DMARD = disease-modifying, anti-rheumatic drug. Do you feel enlightened now? Well, do ya?!

*Descanso, a roadside memorial or marker that commemorates a site where a person died suddenly and unexpectedly.

*In the near future I will write about Bunnytown USA, a 25-year adventure that concluded just before that first lockdown of March 2020.

Pandemicon: The worth of (some) human life

Underlying Conditions Lady Rants: I kvetch; therefore I is!

Content Note: My born of the pandemic alter ego, Underlying Conditions Lady, is unapologetically political and spicy. She speaks the hodge podge vernacular of my life: Caucasoid, Jewish American raised by Germans and an African American, living in New (shiny!) Mexico. Educated. Lower middle class at my luckiest. You’ve been warned.

And here we are, back again to where we started, only worse? 9 months and we have birthed what exactly? I love surrealism as an art form, but I have to say, I’m not a fan of it in public health!

When was it that I became Underlying Conditions Lady? When did I start truly fearing for my life? (Which is a big shift for me, I must say. I’ll save that for a later discussion.) Already in February there were the pronouncements, the risk categorizations: the elderly, diabetics, those with chronic respiratory diseases, cancer, cardiovascular disease, other underlying conditions.

This year would have been a really good time to educate about the difference between risk and cause and how those play out in disease. But, nah. Instead it was the usual who will give us the best return on our investment. Who has the stronger immune system and who not only gets but actually deserves modern medicine’s resources to help the worthy immune system hosts keep living their superior lives.

There is no such thing as a strong immune system. There, I said it. (I propose flexible. Agile, adaptable immune system is what you want. Yes, another topic for a later date!)

But an immune system can most def be compromised! And it don’t come cheap! HIV/AIDS, MS, ALS, SLE — but a few of the expensive abbreviations that will turn an immune system astray, if not turn it to the dark side of the force altogether. And I mean expensive in all the ways!

Underlying Conditions … I feel sure they really want(ed) to say preexisting conditions, to use the cost-benefit language of insurance. Your health in reference to when you started paying into their bottom line as opposed to, say, the context of your life. Around the so-called civilized world, people with Underlying Conditions sick with COVID-19 were denied ventilators and other potentially life-saving measures so that “healthy” people sick with COVID-19 could benefit. That they should live and we die was the difficult but ethical decision, as borne out by statistics. Or rather, the power brokers’ interpretation of the data. The odds of survival. For how long. Future productivity – in all the ways. And good old Quality Of Life, not only quantified, but monetized.

If I catch this thing, I ain’t got no chance.

It had been building for some time, the recognition of my relatively new status in my country as a disabled person. Now in 2020 it shines like a blinding beacon: I am well and truly marginalized!

In the spring I had the briefest of arguments on Twitter about the ethics of ventilator rationing. I could feel the abject horror of my opponent at the suggestion of first-come, first-served. But don’t all lives matter, Babycakes? Yes, that means you might get left out. Yes, you who have been deemed superior. This is “all [people] created equal” in action, Honey Shnoogums! Feels like Scheiße to be treated as if your life isn’t worth saving, doesn’t it? For how ever many years you may have left. At whatever quality others assign to it. Regardless of whatever metric you hold dear. What you’ve contributed to society to now. Your potential. How well you are loved and by whom.

Meanwhile, ethics demand we work to increase resources and decrease need. But we are stuck in this system that can’t quite shake its feudal roots. The many, the people on whom the economy truly relies, are the necessary foundation as a whole, but are expendable individually. Caught between a rock and a hard place, the Administration decided to deny the rock and act as if the dead bodies stacked up underneath them could prop them up, eventually getting them clear of the situation.

I do not apologize for the graphic nature of that metaphor.

Like so many nameless, faceless — but still masked — others, Underlying Conditions Lady has essentially been in quarantine since mid-March. There were a couple-three months when it seemed I might have a chance, when at least my state of New Mexico could maybe spare a ventilator or other limited and pricey measures for such as me. But no more. Again we are stretched to the breaking point. Medical providers are forced into the role of heroes, instead of people doing their jobs with adequate resources. Care is being rationed. And among so many other things, bodies are piling up — quite literally in some places. (Not to worry, we have inmates moving them. For a whole $2/day! With near adequate PPE, even! So not quite slave labor …)

T S Eliot proclaimed April to be the cruelest month. As that’s my birth month, I have some issues with that pronouncement. (My mother did an awesome impression of the guy reading The Wasteland. Just thought you should know.) November is feeling like the most surreal month, with November 2020 topping the charts. The Virus Dominator actively plans the continuation of his reign —claiming his pink slip was lost in the mail, which doesn’t exist because it did not work as he designed it to not work — and there are people being treated for COVID-19 in hospital, simultaneously denying they have COVID and demanding better treatment for COVID. (I have thoughts on how this denial might come to be. Yeah, that’s right. What we got here is yet another topic for another time.)

And so, in the words of my friend, the late, great Gurubhai Khalsa Singh, I’ll leave it there for today. Until next time, I remain yours in autoimmunity, Underlying Conditions Lady