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.

Fun and Games with Transcription and Closed Captioning

I really like both my voicemail transcription service and closed captioning (and subtitles) for a number of reasons. But the errors are sometimes quite … amusing, shall we say. Mistakes are in bold and correction in parentheses. Comments in italics.

Hi Debra it is Mona with confusion … (Infusion)

Hi Debra it is Mom with infusion … (Mona)

Put those first two together and that’s our relationship the last couple years of her life.

Hello this is Boss Kane mental health … (Bosque – pronounced boss-kay)

So, security answer = Rosebud?

Hi Debra this is Naomi calling from project with office … (Pacheco’s)

Ok, so my transcription AI is maybe just a little bit racist?

Andrew seven digit call back code is 347-15 to 6 Inc. you goodbye (And your) (3471526) (Thank you)

This took more brain power to work out than I care to admit!

… can connect you to a trained and Roman specialist who can help find a plan that your knees… (enrollment) (that fits your needs)

That last one may be my favorite so far. It is quite possible my knees do, in fact, require a “trained and Roman” specialist!

Stephen Colbert show captioning on YouTube app: “You’re all sharing the same spats and the same air” (space)

Trevor Noah show captioning on YouTube app: “We’re a mosque” (Wear a mask.) Really?!

Amber Ruffin show captioning on Peacock app: “… but because of KROOIFRSZ I’m not allowed to have an audience” (coronavirus) Seriously!?!

Seriously! I paused and took a screenshot to be sure to get the spelling right. Ms. Ruffin did not slur that word — no how, no way. No way, no how.

Young panda cub lies belly down on table , looking at camera/viewer — I did not keep that Amber Ruffin captioning screenshot, because I need to save space for important mental health supporting images such as the panda cub cuteness, provided courtesy of the Smithsonian National Zoo!

Young panda cub, lying belly down on table, seen from the back. See soles of hind paws and round, fluffy butt. — The end!

Excuses, Excuses … Ex-Cue-Says … X Q Sez!

I have not posted anything — nope, not a damn thing — in 3 months. Here are all the WHYs, in no particular order:

Doubt
Depression
Thanksgiving tradition of a visit from my Big Bad Wolf, annual flare of autoimmune disease activity that dwarfs the others, leading me to deny my distress and need for help during those lesser flares, but also …
Prednisone is a hell of a drug!
Fatigue
Brain fog
Broken tooth
The shiva of “Auntie” I
Pandemic everything
Perfectionism
Publishing is the problem. There, I said it. Not writing. Not editing. Finishing. Committing to transferring to this platform — in some cases to typing or {gulp} dictating first — and then I have to end it. Stop myself from writing about the next connection and the next my mind makes. Or discovers. Is it important to distinguish between the two? Is one better than the other? Ha! Define “better.”
Doubt
Fuhteegue!
Say it. I mean, write it. Do it. Own it!
Pain
Foggy brain
PTSD
Post-Traumatic Stress Disorder, Ole Friend variant
Another broken tooth
I almost got through 2020 without going to the ER.* But that’s where I spent 6 hours of Christmas morning. Viral gastroenteritis, turns out. Great news that I didn’t have a certain respiratory virus, but {sigh} I could have been treated better. Trying to follow up with troubling test results, but …
New medical insurance
It’s not “prior authorization” — it’s authorization! You either do it with or without authorization. I have enough trouble with time as it is!
Ok, I have to dedicate more of my loving-kindness meditation to the insurance industry. Obviously.
Doubt
Insurrection Coup Riot totally predictable yet also incredible thing
T died suddenly
MuthaFuhteegue!
I can’t post anything else, until I publish part 3 of Collaborating with My Wolf. And I can’t post that until I finish it. Which I very nearly have. Except that’s only true of the longer version. I could publish the shorter one right now. Except I haven’t been able to do that for over 5 weeks. The other version keeps pulling me toward disclosing my abuse history, or at least part of it, and I don’t know if it’s ok to disclose part and not all at once and that last thought reads as super odd as it feels, but I’ve kept all these secrets for so long, because I’m a good girl, and I don’t know how to spill them without confirming that I am the terrible person that I have secretly thought myself to be most of my life.
It might be ok to publish a post or two while working on part 3. I just can’t make the official launch until I finish and publish part 3.
I now have 4 other posts in Drafts.
Deleted the poetry posts. Formatting disaster. Category 4. Will try again. Promise.
Anxiety. Is that fear + doubt? Feubt? Looks German or French; however, I don’t believe it is either. I could be wrong.
The consistency of split pea soup, it comes on little cat feet and causes my brain to lose track of all the usual routes in its atlas. Wow. Metaphor-maggedon!
Pandemic burnout
Lupus burnout
I just don’t feel good burnout
Despite my best motivational speeches, neither the dishes nor the laundry will “do” themselves!
And now … taxes!

Black wolf-like dog with white fur outlining his muzzle, lies asleep in a tight curl. Watercolor effect to photo — The marvelous schipperke Duke at rest

*Yes, really, it is the Emergency Department — not Room. I do know that. The issue is that nowadays “ED” is most often used for “erectile dysfunction” and most everyone in the US still understands “ER” basically means the same thing as Emergency Department. So, yeah, I am part of the problem.

How to Get Through the Weekend without Pain Pills — in 21 uneasy steps

Preface: My former health insurance up and quit as of 31 December. My new insurance needs prior authorizations (PAs) with detailed histories (and possibly small animal sacrifices) before covering some of the meds I’ve been taking for years, including pain meds. (Yup, opioids. Ever controlled in a way that punishes legal users while not addressing the true source of the crisis, opioids.)

The need for a PA is only generated when one tries to fill the prescription. One can’t fill such a scrip early and is suspect if has more than a few leftover pills. But, one may get a 7-day “credit” of pills against the month’s supply, which then voids the prescription. So, when the PA goes through, one needs a new scrip for the remaining 3 weeks. And, if it takes more than 7 days for PA/approval? Well then, you is shit outta luck!*

The Steps, according to Underlying Conditions Lady:

1. Ration your remaining pain pills for maximum ineffectiveness.

2. Think hopeful and liver-affirming thoughts while swallowing extra-strength generic acetaminophen/paracetamol.

3. Try not to feel like a loser as “dat dumb drug dat was poisoned, ja?” — as your German aunt referred to Tylenol — does little more than reduce your lupus fever and aches a little.

4. Distract yourself with NBA basketball, podcasts, and passing thoughts of fire bombing FDA headquarters.

5. Play with the dog until everything hurts too much.

6. Go ahead and have an edible. Medical marijuana is legal in New Mexico and you have consumables. Lemon-lime-flavored, weedy gummies* and dark chocolate with a ganja aftertaste. Yum, right?

7. Try to enjoy being high for several hours. Stretch. Do bed yoga. Fall into a deep and dreamless sleep, which does, in fact, help.

8. Make a comprehensive list of all the drugs you’ve tried over the years for your multiple forms of chronic pain, and how they failed you — or you failed yourself — so that now you take opioids, because, of course, you are a loser.

9. Cuddle in bed with the dogs.

10. Play a game on your phone. Try to ignore the tinnitus. Fail at that, but win the game.

11. Nod off while playing a game or three on your tablet.

12. Toss and turn, while trying to not disturb the husband or, more importantly, the dogs, and wonder why the fuck your leg won’t stop jumping around.

13. Embrace your identity as a total loser as you take a low-dose gabapentin from your dog’s stash. Think: This should take the edge off the nerve pain. But just one pill, lest I lose my ever-loving mind. (Not an exaggeration.)

14. Do a guided meditation by way of an app on your phone. Observe your mind wander to thoughts of insurance — not very complimentary thoughts. And to the nurse who said you were “not a very squeaky wheel.” And to the fellow patient at your rheumatologist’s office who giddily declared his pain level was 0!

15. Zero? Zero! Schweine Hund! Arschloch! ¡Pendejo! You can not remember the last time your pain level was below 3! WTF?!

16. Breathe! Remember that you’re working on radical self-love, which means not using dehumanizing language, among other things. But … Fuck it! You hate the goddamn pain scale. And all this prior authorization shite. Also, reactionary and ineffective FDA policy. But mostly now not being able to sleep.

17. Eventually, you decide to make a gratitude entry in your journal and that helps a bit.

18. Next day you go ahead and take the nsaid meloxicam and cross your fingers that your stomach can take it. Maybe take one of your man’s omeprazoles. Or not really, as that’s illegal. And you don’t actually cross your fingers, but you do worry, because that’s just as useless.

19. Just go ahead and have another edible. Maybe you can read a short story or two before you nod off. (Current library loan, Ayiti by Roxane Gay!) Hey, maybe you’ll feel creative and write something. No pressure.

20. Realize you don’t have the strength to launch fireballs at the FDA; hence, you’d need to hire a catapult operator. Wonder what that might cost.

21. Recognize that you have taken a break from your loving-kindness practice, temporarily, in lieu of other meditation foci — and it shows! Give it a shot while stoned, because, why not? Direct it at yourself. It is possible that you may not, in fact, be a total loser.

Face of black dog with pointy ears, round forehead, and loving eyes. — The one of a kind presence that was Princess Holly Bollywood, she of many nicknames and much adorable ridiculousness.

*As opioids can be a little to very constipating, this may be literal for many patients.

*I still pronounce these rubbery treats as goo-mees, as did my German aunt for the 35 years I knew her, all in the USA. Never been a fan of anything gummy — worms, bears, etc. But I’ll readily take them over sweet-ass marzipan! I’m a freak!

Who Do You Think You Are? About Imposter Syndrome and The Fails

There are many things I quite love about the Millennials. I’m on the Boomer/GenX cusp myself: technically a Boomer, but I feel more early GenX. Of course, I’ve done my duty and complained about and cajoled the younger generation for this and that, but really, truly, the kids are all right. Among many other things, I’m grateful they have brought the term Imposter Syndrome into the larger national conversation about mental health and well-being.

According to this well-researched Wikipedia article, Imposter Syndrome, coined in 1978 after a study of high-achieving women,* is a “psychological pattern in which an individual doubts their skills, talents or accomplishments and has a persistent internalized fear of being exposed as a ‘fraud’.”

According to many of us in the chronic illness and disability communities, a type of Imposter Syndrome affects us’ns* as well, in which we doubt our level of authority about our bodies. We may doubt and downplay our symptoms or even withhold relief, even as we outwardly strive for recognition, respect, equitable care, and basic accommodations. Especially vulnerable to this type of Imposter Syndrome are those of us with so-called invisible illnesses and disabilities who have been dismissed and whose presentations have been diminished by various persons over the years. Many have been treated as if they themselves are invisible.

Yes! I am not alone! I mean, I guess I should be upset that there are so many of us who have been mistreated and denied and now have to wrestle with doubts and fears about what we know to be true — and I am — yet it’s also such a relief to know I am not the only one. Not by a long shot.

Despite the visible changes to my body, various test results, a long list of diagnoses, and statements from friends attesting to the effects of my diseases they’ve witnessed, I still have times when I fear someone — myself included — will expose me as a lazy-ass faker. I never wanted lupus and yet I knew on some level that I had some type of the enigmatic disease long before diagnosis. Along the way, a few people said, “No way you have that!” What if they were right? What if I’m really manifesting and/or exaggerating symptoms? Or both? Which symptoms? How do I …

This sort of internal battle is not a good fight. For me it’s a product of societal pressures and notions about the worth of being healthy and productive; a combination of disparagement, mistreatment, gaslighting, and denial of illness and resulting disability in childhood; entrenched ableism in much of the alternative health and wellness community;* and the bad doctoring I endured the last several years. Not to mention all those people whose response to hearing I’m sick was, “But you look really good.” (Except I did just mention them now, didn’t I?)

I have been struggling mightily with this here blog.

What am I doing? No one needs another blog. I don’t know what I’m talking about. I’m not sick enough to be interesting. I’m too sick to figure this out. There have to be other people doing this way better than I. I can’t do this. No one cares. No one will like it. Oh crap, what if people do like it? I can’t do this. I don’t know what this is. I haven’t carefully planned it out. Is this even the format I want? I should start over.

And the beat down goes on.

I had a major episode of The Fails the week before Christmas. According to Debapedia,* The Fails is a state of mind in which the afflicted is convinced they have failed everyone in their sphere of influence in ways that are utterly despicable, because … well, because they failed. Duh. It’s related to perfectionism, but it’s so much more than that. The feeling of worthlessness, of having let everyone down and having no way to rectify it feels bone-marrow-deep. Of course the kicker is that often there is no evidence to support this claim to failure and few if anyone else sees any failure at all — and certainly not irreparable fiasco.

Like Imposter Syndrome, The Fails only makes sense to the person feeling it at the time. Both mental phenomena are rooted in fear — that one doesn’t measure up, has less worth than others, doesn’t deserve praise or respect. And for me at least, shame plays a significant role as well. And then one ridiculous notion dovetails into the next. I’m a fraud — I’m not really that sick — so why can’t I get these things done? — because I’m worthless and I ruin everything, including my health.

The solution? To my knowledge, lasting change takes committed work with the usual suspects: psychotherapy and/or support group(s); a solid support network (including healthcare providers, ideally); journaling and/or artistic modalities that aid in addressing negative self-image and deprecating thoughts; meditation or another centering and affirming practice; adequate nutrition and sleep; whatever movement you can and do enjoy.

I also heartily recommend Sonya Renee Taylor’s course of radical self-love, as laid out in her book, The Body Is Not an Apology. I’ve been (re-)reading this wonderful, radical, next to impossible book for over a year now, loving and struggling with the seemingly simple exercises. Among other offerings, daily affirmations delivered free of charge are available on the TBINAA website.

In the short run, here are some things that have helped me: crying; laughing; breathing exercises; playing with the dogs; listing, saying aloud all supposed Fails and hearing how bizarre, even laughable they sound; listing or sometimes arranging evidence, documents supporting accomplishments and/or illness and disability and directly contradicting the concept of repeat failures. Music. Sketching. Gratitude.

One of my accomplishments during this year of Underlying Conditions Lady in pandemic lockdown is that I have read a great many books! Mostly ebooks and audiobooks borrowed from my local library. Hurray for public libraries! Recently, I checked out a book of essays by Audre Lorde and the following quotes stood out as a shield against feeling like a fraud or a failure. I leave you with Audre Loree’s wisdom.

“For we have been socialized to respect fear more than our own needs for language and definition. And while we wait in silence for that final luxury of fearlessness, the wait of that silence will choke us. For it is not difference which immobilizes us, but silence. And there are so many silences to be broken.”

Audre Lorde, “For there are no new ideas, there are only new ways of making them felt.”

Head of large rabbit with floppy ears lookung content at being held in by human. (Person largely unseen.) — Tig the Notorious of Bunnytown USA. He was the rare bunny in both looks and in liking being held and cuddled.

*The phenomenon is not exclusive to women, by the way. I just think it’s mighty interesting that it was first observed in high- achieving women. We see you Dr. Jill Biden!

*Pronounced just like it’s spelld.

*I will write more about all that stuff in the future, especially regarding the anti-disability prejudice of some “wellness” thought and practice. Keep your outrage on simmer until then.

*Debapedia is my mate’s favorite reference tool, far and above Siri and The Goog. Debapedia is affected by occasional dense fog, which obscures information access. Rest assured, if it’s in there, the Deb read it somewhere at some time. Or heard it and wrote it down. In a notebook. Or my journal. Maybe the back of an envelope. Or could be in the cloud … somewhere … over the rainbow?