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.
*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!
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.”
*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?
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!
*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.)
Here is where I shall occasionally draw back the curtain and let you in on the best snippets of gossip and whatnot heard during my monthly visit to the Infusion Clinic, during which I spend the afternoon in a gray lay-z-boy enjoying a bag of drugs with other gray-recliner-ensconced “stuck-up” types.
22 July 2020
Sad to say, but for the first time in nearly 1.5 years of regular visits to the clinic, I overheard stereotyping and intolerance. Although the subjects weren’t called out by subspecies, the grouping by color made the racism impossible to ignore. We just don’t have many varieties of hummingbird in New Mexico!
⚠️ Warning: What follows is an example of ornithological racism*…
“Those orange hummingbirds are jerks! Who knew? Bright yellow and orange. The plain ones are nice – with green wings – but those orange-red ones are always fighting over the feeders.”
Yes, dear readers, male rufous hummers are flashy golden, orange, red and can be quite territorial. I am a birdwatcher and lover of hummingbirds and I can assure you that all of those little hovering wonders are jerks. Generally the males tend to be more aggressive dillweeds than the females, but the womenfolk can lay down just as well as the men if they want. And in the midst of summer round here, they often do want. Yup, even the unassuming female black-chinned, described above as plain with green wings.
*aka Bird Bias. Not to be confused with Big Bird Bias, which is absolutely fine between consenting adults — not for me to judge. Though I will say, yellow is not my color. Especially unclothed. Holy frijoles, I’m pale!
Following is a letter I submitted to the fine folks of The Atlantic in response to their request for feedback on their app. I had fun. Judge as you will.
As much as I love reading The Atlantic through the very well designed app, I just don’t know how much longer I can deal with the passive-aggressive greetings before I lose what little sanity and self worth I’ve been able to hold onto in these pandemic times! It’s midnight here in New Mexico and I wish to relax with 30 minutes of reading, but my app — shall we call her Karen? — chooses to admonish me with, “Still awake?” Oh no, I’ve been caught! I’ve done something wrong! I can feel the shame in my body, face burning, chest tight, stomach — I don’t know how to describe the stomach thing. Then I think, “Obviously I’m awake, Karen. Unless there’s such a thing as sleep-phoning? Sleep-tabletting? Sleep-smart-thinging?” I gird up my loins (figuratively, as my actual loins aren’t much for the girding) and scroll through the highlights for Today like the desperate, late-night addict I apparently am, my interest piqued here and there, my mood lifting with anticipation of some satisfying reading, only to have Karen emerge at the end to shout at me, “Go to bed!” I’m left feeling small and wanting. I was looking forward to this. But Karen knows best. Or does she? I start negotiating with her. “It’s only a little after midnight, not 3:00 a.m.” “You know I’m on prednisone again for the lupus and I’m just not going to go right to sleep?”
Wait a minute, who the hell put Karen in charge of my schedule? Shouldn’t I be in charge of Karen’s schedule? Why can’t Karen tell me what a great reader I am or show a groovy graphic or really anything that doesn’t make me feel like a piece of crap for wanting to enjoy the reading room after hours? My private reading room, at that. Nothing would also work. I’ve looked in Settings more than once to see if there was a way to simply turn off the “Greetings” but no joy.