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!

Collaborating with My Wolf (part 3)

Fight or Flight or Freeze or …fuggedaboudit — pronounced di-ˈnī(-ə)l! Or … work it out. Cooperate. Negotiate. Give and take. Federate.

Federate? Yeah, no. I’m going to have to forego alliteration here and stick with my go-to word for my favorite type of artistic process: collaborate.

For me, collaboration is not just working together. Rather, it is an intimate process of channeling different perspectives and talents toward a common goal. It’s often challenging and sometimes counterintuitive. It demands consideration (meaning deliberation, examination, attentiveness, respect) and letting go. In my experience, the most rewarding collaborative experiences involve a lot of letting go. Collaboration may not be the best process for every project, but when it works well, different visions and approaches accommodate each other and create something wholly unique that would not have been conceived without all those adaptations along the way.

So, what on this bluish orb teeming with life do I mean by collaborating with my Wolf? How do I accommodate and adapt to and with these diseases? Diseases of unknown causes, at that. Does collaboration mean we will never struggle? Hahahaha! Sorry, I meant to say, no. Hell no! Collaboration is a very different approach than fighting, to declaring oneself a warrior against a foe, but that doesn’t mean a collaborative effort will be free of conflict. No, not at all.

Originally, I titled this series, “Collaborating with a Predator” — then I quickly realized that sounded as if I were aiding and abetting the likes of Jeffrey Epstein. Nope! Hell no! Hell no to the 10th power! I just wanted to convey my idea that my systemic lupus is wolf-like, not just because of the Latin nomenclature, but due to its near-predatory nature. Wolves are true predators, organisms that primarily obtain food by hunting, killing, and consuming other organisms. Sharks are predators. So are humans. And Venus flytraps. Sea slugs, too. But I digress…

Obviously, I’m going for an analogy here. Metaphor, even. I think. But, clearly lupus is not an organism.* It does not hunt for food to bring back to its den of adorable, baby antibody luppies. But it is like a predator in that it claims its host as its territory and causes damage to the organs and tissues within by killing healthy cells. All sorts of prey all over its territory. (SLE is one of the more wide-ranging autoimmune diseases, quite the omnivore.) All this killing depletes the host and almost appears to feed the disease. It may not be accurate to say lupus targets its prey, but it has its favorites: skin, kidneys, heart, lungs, brain. Blood. Joints. Mucous membranes. And without intervention, it just keeps inflicting damage.

So, collaborating with a predator, something that naturally kills and for which there is no current means of eradication — a cure, in this case. There are treatments, attempts to tame the beast, if you will. Beat it back into remission, into hiding. But while some might protect the organs for a time, they may not help the person feel better. Or to know how to live with this enigmatic disease. This refractory disease.

“Lupus is an inflammatory, refractory disease.” That is one of the most affirming sentences my lovely rheumatologist has said unto my self-deprecating person. Refractory, as in resistant to treatment. So, it’s not my fault! This thing is just obstinate. And wily. Almost, slippery. I gotta learn to live with it. Even as it keeps changing, adapting.

I live with several chronic diseases. (It’s crowded round here. No wonder I’ve gained weight!)* One of them, asthma, has been with me since birth. Thankfully, my asthma has been well controlled for decades now. But that was not the case when I was young. As a child, I was persuaded to fight through asthma attacks — to “persevere” — despite drowning in mid air. I had a number of close calls. But hey, whatever doesn’t kill you, may damage your bronchi and your confidence in the adults assigned with your care.

I was told I would grow out of my asthma, but in my first college go-round, the miasma of chem labs and major personal stressors took my asthma to a whole new level. (Yes, I enjoyed that!) I had to stop fighting — on more than one front — and decide to accept and work with my chronic health condition. That shift in mindset led me to change my college major and my long term goals in really big ways — neither quick nor easy, but oh so necessary — and to become an advocate of affordable healthcare and accessibility services to boot.

In 2019, after a long internal struggle about social media, I joined Twitter.* Eventually I found the disability community there. My people! People owning their everything. People fighting for accessibility, economic justice, dignity, respect — but not against themselves. Not against their disabilities. Or their defining conditions or illnesses. Not against who they are.

Embracing my identity as disabled and feeling welcome in a marginalized community has been key to my wanting to live and to live well as I am now. And becoming disabled and proud is a product of my collaborating with my Wolf.

The last five years presented so many significant life changes and challenges — serious illness and disability were not the only components of that big-ass iceberg*— that all together left me feeling unmoored and unsure who I was through much of it. Was I a dancer, still? Or no more, after 33 years? (33 years … It just had to be 33, did it?) What was my role now? What did I want to do? What could I do? Why does everything keep changing?

But now I have a new identity. One that embraces my current reality and enfolds my past roles as well. And a community. I have support. I can be disabled and proud. I can be sick and live well, which is so much harder to do than it is to say. Or type. But that’s all part of the learning, adapting, and letting go of collaborating with my Wolf.

So, I have a collaborator. Not the collaborator I wanted, to be sure. At times I still have difficulty fully accepting this rest-of-my-life companion. However, the more I do — the more I dive into the collaborative experience with my Wolf — the more I learn. The partnership allows me to explore my health and investigate what does and does not help me from that unique perspective. For example, I’m now thinking about my near lifelong sleep issues in a new way. Instead of trying to fit my problem into other people’s models, I have motivation and (dare I say it?) chutzpah to draw up something personal, bespoke, if you will. A combination of a rare sleep disorder, cyclical pain, hypervigilance á la PTSD, and behaviors I’ve adopted over the years that reenact (or attempt to do so) aspects of my childhood abuse. (That last bit may sound strange; however, conscious or unconscious, “re-victimizing” behaviors are not uncommon among survivors of childhood abuse. More on that in future posts.)

Likewise, I have started on a novel approach to the common and very frustrating symptom of brain fog. I’ll write more on that as I discover what works and what doesn’t. Allowing room for failure is vital! In a holistic sense, this partnership is deepening my understanding of some of my unconventional ideas about the practice of medicine from my days as a movement therapist. It has further illuminated for me the reactionary nature of our healthcare system that puts patients on the defensive. That incorporates shame in matters of disease avoidance and treatment, with a subtext connected to morality, sin, and redemption. I’m talking about so-called Western modern medicine and so-called alternative medicine both.

I’m still working this out. Or, trying to. Failing … Succeeding? Learning! Is that the space between winning and losing? Also known as Life?! That’s what this here blog is for, sharing my failures and thoughts and lupine whatnot. I don’t want to fight or be heroic or inspirational. I don’t even particularly want to be a fine example. I just want to be okay, as I am. Worthy. Disabled, yet worthy of consideration. And access. Accommodation. Even if I fail. Especially, when I fail.

Collaboration is the aim. Accepting the shifting sands, letting go, exploring unusual ideas, grieving, relinquishing harmful judgments, adapting, embracing vulnerability. Partnering with my autoimmune diseases promises a bumpy road ahead. And the potential for a life lived on my terms. And maybe a little enlightenment now and again. Which I will share with y’all.

In collaboration with my good Wolf, I shall howl!

One of the yuccas we care for showing off for the pollinators.

*Nor is lupus caused by an organism, as far as medicine knows. Just wtf lupus is — it’s hard to say, other than major malfunction of the immune system. “It” can “attack” almost any organ and system in the body. So it’s like the immune system is now under the direction of Snidley Whiplash? Or, Jared Kushner! My sincere sympathies for all good, decent people named Jared!

*I believe one doc thinks I’m a type of disease hoarder. Calmly practicing my hysterical magic, collecting ills for some ridiculous womanly reason. More on that in the future!

*@aqrobattz Do you get it? Well, do you? Huh? Do you? I mean, seriously, do you get it? Huh?**

**I apologize for the obnoxious neediness of that last footnote!

*Respectfully, aren’t all icebergs big-assed? (Asking for a friend.)

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

Superperfectionisticshamefilledprocrastinatious

And now for something completely different … kinda sorta maybe. When comparing similar things, my Aunt Lore liked to say a thing was “exactly the same only different.” So, yeah, it’s like that?

Three weeks ago I quietly went public with this here blog. My plan was to promptly add a Part 3 to my opening trilogy and scan in my hand-drawn logo, followed by an email campaign. Perfect!

But I couldn’t do it. I labored over Part 3 – in part due to a heavy brain fog. “Like pea soup,” is how my folks used to describe the thick fogs of my Pacific Northwest childhood home. Fact check: Fogs not nearly that green or smelly. (I hate split pea soup. Can you tell?) Also, I broke a tooth. It’s gone now, in its eternal resting place in molar hell. Grind in Power?!

I am a recovering perfectionist and I had me a relapse! Actually, my real addiction is to shame. According to Brené Brown, shame is the root cause of perfectionism and of much procrastination. I could find a link to BB … I’mma gonna let that go for now.

So, in the spirit of the following Sam Shepard quote, I may post other stuff before getting to Part 3: Collaboration means what now? (Non-working title)

I’m a great believer in chaos. I don’t believe that you start with a formula and then you fulfill the formula. Chaos is a much better instigator, because we live in chaos – we don’t live in rigorous form. –Sam Shepard–

The Duchess Draymond Pugbelly is ready for her romp in the snow!

Photo description: Adorable, black, short-faced dog wearing blue vest perched on closed SUV tailgate.