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.

Tales From the Infusion Clinic: Out of Context

Part 3 of Sound of Fury is in the final stages. Meanwhile, here’s this.

“So you said, ‘Sorry, but I’m not licking anyone!’”

Their giggles grew into laughter as the receptionist on the phone and the colleague to her right saw my bemused self on the other side of the plexiglas. For 3 years I’ve checked in at the Rheumatology side of this elongated desk* once a month for Infusion with J, the receptionist who just spoke that fabulous line above through her headset. For the last 2.5 years we’ve only seen each other masked. I feel familiar with her voice, eyes, hairstyles, humor.

“Right! I don’t blame you!”

J motioned that she’d be right with me and would explain everything as she said into her headset,

“I mean, sometimes tragedy just can’t be avoided.”

Then she looked at me, then at her colleague, smiled, listened, and … burst out laughing. I enjoyed seeing J in high spirits. She’s always been an honest and efficient part of my team at Rheumatology and I look forward to seeing her. There have been times I’ve approached the desk just after someone has been discourteous to J, if not also disrespectful, and I sense it’s probably for something beyond her control and she’ll wave it off with a Well, I don’t know what he thought I could do about that? or Some people just — or {sigh} and then greets me with a smile.

Sometimes we patients are justified in our anxieties and rages. (That’s no excuse for abuse!**) Sometimes receptionists can not only not be part of the solution, but also contribute to the problem. Especially for a sick person in crisis. These receptionists feel they are gatekeepers for their bosses, the docs, rather more than they are part of the team that serves the patients. A great receptionist like J knows how to balance the two interests with aplomb. In most cases. Can’t please everybody, of course.

Surreal image of hot air balloons, miniaturized, seemingly floating in a giant glass of water with a droplet flowing up against gravity.
Falling Up by DÅL|é

Change is afoot! I had high hopes for this anti-lupus drug I’ve been infusing monthly for 3 years now. I’ve had high hopes for treatments in the 4 years before that. But … We gave it time. More than we planned, should it fail to elicit the desired results. Next up, while also a biologic, is a considerable step up in immune system wrangling, designed to aggressively address all 3 of my autoimmune diseases. Sort of. Close enough for government work! as my Uncle Tom used to say.

My rheumatologist, Dr. K, and I were first thwarted by covid19. Then by organ damage/cancer scares. (Benign!)*** Then Dr. K got sick.

Soon after the start of 2022, I heard Dr. K had just gone on indefinite medical leave. Rumors and dates of her return came and went. Finally, in late July, I saw Dr. T, who joined the practice a year ago, I think. He’s “young” and exuberant and pretty excited about my rare disease and somewhat unusual autoimmune disease profile. I like the geeks, as long as they’re caring as well, which he seems to be. Good thing, as Dr. T told me he is now my rheumatologist, as Dr. K is officially not coming back.

So, it’s serious. I truly wish the best for Dr. K. I’ve missed seeing her these last several months. I so hope this decision and what follows work out in the best possible way for her!

“I learned a long time ago the wisest thing I can do is be on my own side.” Maya Angelou
From Word Porn

Dr. T also claimed he read through my chart prior to my appointment (Wow!) and that he was going to start work on getting insurance to approve the biologic no. 2, the one Dr. K and I discussed. Promising. Scary. With a very different infusion schedule.

I was already scheduled to receive my monthly infusion the following week. Good thing, too, considering my insurance took a full month to give the ok. It appears my memorable check-in with J marks my last infusion of my first biologic!

Speaking of which … J explained that the person on the line had rescued two tiny kittens. Despite rescuer’s best efforts, one kitten died. Rescuer was relaying to J info/advice received from Humane Society expert, who pointed out (more than once, apparently) that mama cats lick the anuses of their young to stimulate bowel movement and keep it all clean down there. Thus, prompting the protestation against licking anyone. And the wholehearted agreement of same sentiment by our lovely J.

I’m right there with them! Maybe a warm towelette?

I’m so grateful that I’ve had these years with Dr. K! After that last infusion I cried about not being able to take this next step with her, as planned. I’m truly thankful I can take it now with a new doctor and the same support team I’ve come to know and trust. Even though they’re not licking anyone! Not even to save a fragile life!

Spotlight on mutant cartoon duck: spiky mohawk, piercings, dog collar, metal plating wing, snake head on tail. “Likes to chew on pencils during meetings. Can walk through walls.”
One of my many very fine ducks, courtesy of ClusterDuck!!

September has become a difficult month for me, with occasions to dwell on the passing of a few loved ones. But this has been the second extraordinary August in a row! Last year’s was all about the most stressful business property sale we could have never imagined, intermixed with adopting a marvelous puppy (Roo!) with a nasty parasitic infection after a beloved dog (Duke!) died at the end of July.

Today, 25 August 2022, is the first anniversary of closing. Out of business, we are. Have been.

This month began with a week of migraines. One day I bent at the waist to get a bottle of water out of the fridge and was overcome with excruciating pain. For the next two weeks I was in varying degrees of debilitating and immobilizing pain and muscle spasms. Then I returned to my normal level of chronic pain, fatigue, etc. I can move! Cook dinner! Think! (With caveats you understand.) Halle-freaking-Berry-lu-jah!

And now the migraines are back, because —? But second biologic approved/authorized and now awaiting scheduling and then maybe wait a few months to make effectiveness known …

Meanwhile, don’t expect my team at rheumatology to lick anyone. They’re very good and professional. They have their limits. Good to maintain boundaries!

Small black and white puppy has nose mere millimeter from backside of slightly taller small adult black dog. Caption reads, “Learning to cue … Back it up, mate!”
Our little Roogele at ≈ 8-9 weeks of age. (Plus Draymond’s backside!)

*Rheumatology shares a long reception desk area with the Pain and Spine Clinic, which makes sense, or would, if they actually coordinated care, but they don’t. The receptionists make good use of their shared space, though.

**😇🐮! That rhymes! But also, prednisone can be an excuse for abuse. Another in my growing list of topics I mean to write about here sometime in the future. But when? I ain’t got no idea!

***I would not make you hunt for benign v malignant cancer determination in the footnotes! Who do you think I am? I will make you wait through much of 2021 and 2022 while I go through the whole process without telling anyone a thing about it, though. Yes, that I will do.

There is no title

I’ve officially lost track of what I’ve actually posted and what I’ve let languish in my drafts folder and elsewhere. I am finishing what appears to be a 4-parter on domestic violence that started as a Tales from the Infusion clinic post on June 1st. I’m debating posting that biggun serially. Might discourage endless editing and encourage finishing…

Meanwhile, June 30th infusion clinic topics were a)Dogs and Fireworks and b)Patients and Infusion Copays. As to the latter, insurance companies are doing their usual shenanigans and claiming inflation is forcing them to burden patients with more than their fair share. So, many patients are canceling and going without. Was lonely last week. As to the former, we got both herbals and pharmaceuticals for the comfort of our canine pals!

Dog with pleading look. Text reads, “Happy July 6th! Please say you’re DONE with the LOUD NOISES for a while! Thanks!!”
Generously gave y’all an extra day to shoot off any stragglers! (No, Roo did not enjoy his “first” July 4th. He thinks firecrackers are not smart!)

Am I Not a Woman?

I think I am a woman. Therefore, I am not a man?

Are those the only possibilities?

It’s International Women’s Day, people! How shall we celebrate?

Remember that nursery rhyme about girls being made of sugar and spice and everything nice and boys of snips and snails and puppy dog tails? (What is a “snip” in this context? Sounds like a cute but annoying magical critter from Harry Potter’s world.)

I resented the bejeezus out of that poem as a kid. I did not want to be defined as everything nice! I kinda identified as a tomboy, but that term didn’t make sense to my precocious self. Shouldn’t it be tomgirl? Either way, it didn’t really capture how I felt. I liked being a girl. I just didn’t like trying to fit into other people’s idea of what a girl should be.

(Also, what’s up with nursery rhymes and disembodied animal tails? Three blind mice lose theirs to a knife-wielding madwoman and puppy dogs have to sacrifice their tails to the formula for human boys? Mother Goose is a freak!*)

I am a cisgender, straight/hetero woman who firmly believes in and advocates for equal rights for all. I believe transgender and non-binary folks are the ones to dictate how they identify and wish to be known. (Goes for everyone, really.) I have no trouble respecting their wishes. Which is not to say I haven’t messed up a few times. I have. And, yes, I do still stumble occasionally over they/them/their in reference to an individual. Nowadays, mostly when reading. Progress — one awkward step after another. Awkwardness is a small price to pay in order to convey respect, to honor people for who they are, just as they are.

There is a new app designed to help “people who menstruate” track their periods. Some folks are incensed over this wording. Supposedly, not because women are people, but because, in the objectors’ opinions, only women menstruate. And get pregnant and give birth. (And endure endometriosis and undergo hysterectomies. Relish the joys of menopause…) These people feel threatened by non-cis folks, particularly by trans women.* Somehow, if society recognizes them for who they are and stops discriminating against them, they will not only no longer be marginalized, they will rise up, abuse cis-women, and roll back women’s rights to the early 20th Century. Or worse. (And worse?)

This kind of backlash against recognition of non-cisgender identities is not new. Last year JK Rowling* went public with her anti-trans thoughts that, among other things, only women menstruate; if allowed access, transgender women would threaten the safety (and sanctity?) of same-sex spaces such as women’s restrooms and changing rooms; and that all transgender persons should undergo extensive psychiatric testing and analysis before being permitted to transition — as in days of yore. Ah, 2020!

Sadly, none of her reactionary thinking is new. The only thing new here is that transgender people are gaining acceptance and progress is being made in ensuring their rights. Over 20 years ago(!) I listened to a group of women trot out fear-based, anti-trans ideas like Rowling’s to justify their policy of limiting participants for their women-only retreat to “women born as women.” Among the organizers were a couple self-described radical lesbians who were —how shall I put it — not fans of men. (I was a hired entertainer and had no say in the matter.) Their belief was that a person born (biologically) male, even one fully transitioned to female, could never shake the male privilege bestowed upon him by society. He/she* had the lived experience of a man for most of life so far, which colored his/her future as a so-called woman. Women at the retreat would not feel safe — maybe not be safe — with such people around.

Many of the women attending the retreat had been victimized by men in various ways. Some had been victimized by women. Some of us lucky born female types, by both sexes. I have yet to meet a person who has been physically or sexually assaulted by a transgender person. I do, however, know one person who was emotionally abused by a trans person. Which to me is a weird kind of progress. One’s gender identity or sexual orientation or race or religion or lack thereof (the list goes on) does not erase the possibility of being an abusive jerk. Or worse. Or better. Even much better.

By the time of the women’s retreat mentioned above, I had had the pleasure of meeting several gender non-conforming people, including persons born with indeterminate or otherwise unusual sex organs. All of them had experienced discrimination and most had survived more than one kind of abuse. In the years since, I have met several more such persons and all have had experiences of discrimination and some have endured abuse as well. Some of those experiences have been in women’s and men’s restrooms and locker rooms. That trans women were victimized in women-only spaces did not surprise me. As a woman, I have never felt all that safe in such spaces. Not only because I have seen Carrie and Mean Girls, but because my body and womanhood have been picked over and negatively assessed by other females in such spaces since puberty and I was once physically assaulted by a gang of teenage white girls for not knowing my place. As it is, little more than convention prevents a man, looking and feeling like a man, from entering a women’s restroom. Obviously female as I am, I have mistakenly entered a men’s restroom twice. Both times I found myself inside a urinal-lined facility, I apologized emphatically while making a hasty exit, flabbergasted at how easy it was to blithely go through the wrong door!

In justifying her anti-trans position last year, JK Rowling disclosed that she has been a victim of domestic abuse and sexual assault. In Rowling’s reasoning, this history that she shares with so many women is why she so fervently advocates for “safe” same-sex spaces. And thus, those efforts are to protect women and further the cause of women’s rights, as opposed to seeking to deny transgender persons their rights. (Or to police who is and is not truly a transgender woman.) In my opinion, Rowling’s position does disservice to women, men, and transgender people. Yes, women have a long history of being abused by men. In that history there is no such thing as a truly safe place. (Sorry, but that’s just factual.) It is also true that men are not the only abusers and women not the only victims. Awareness of the problem has grown, women have learned how to protect themselves, ensure their rights, and lead the effort (with many men and gender nonconforming folks working with them) to prevent such abuses, and the societal issues that often factor in to them, from occurring. In other words, I feel Rowling’s position, similar to the anti-trans policy of the retreat organizers, pits women against men, and sacrifices transgender people’s rights in the name of promoting the illusion of a safe and loving sisterhood of the female sex. A sisterhood that embraces menstruation, the “miracle” of birth, and a rather fragile view of femininity.

My celebration of womanhood need not narrowly define woman by bodily functions like menstruation. Nor do I need to blame “others” for what has befallen women over the years. I don’t need to have enemies to get ahead. The ongoing fight for women’s rights, healthcare, pay equity, and against domestic and sexual violence will not be diluted by including others. Quite the contrary, the more the merrier and stronger. In fact there is a lesson here in past women’s movements excluding more marginalized groups (usually fellow women) for fear of weakening the effort, only to regret it later. People’s rights are not a limited resource. A transgender person enjoying their rights does not do so at the expense of any of my rights as a woman.

And just in case it needs to be said, the idea that a transgender woman is nothing more than male privilege in women’s clothing, hormones, and maybe genitalia, is a profound misunderstanding of who transgender women are.

Yes, some people menstruate. Most of those folks are women, born as such. But not all. And some women don’t menstruate — and never did. Born with clear female genitalia but no uterus, for example. Or cancerous ovaries removed before puberty. I rather envy them. I haven’t menstruated since I was 36, when a surgeon liberated me from my uterus. (I almost wrote the uterus, but it was definitely mine.) Recovery was rough. In part because of the interconnectedness of the thing, but also due to a couple life-altering deaths that came on the metaphorical heels of that organ removal. (What kind of heels would my uterus have worn? I’m thinking impossibly tall stilettos that cause bleeding blisters, painful bunions, etc!)

I am a woman. One who has not menstruated for 20 years. I have birthed no babies. I have recently survived menopause. (For me that is very much the appropriate verb and, frankly, I want a badge attesting to same!) I am also a survivor of abuse and assault. You may share my public restroom, if you like. No matter what your gender identity, I respect you as a person. Because denying people their rights based on fear and stereotypes does not ensure anyone’s safety. I will also not let my guard down in such a place. Because I am strong and aware and am not a readymade victim because I am a woman. And because it’s a goddamn public restroom FFS!

*Don’t get me started on that Aesop fella!

*I’m using “trans woman” instead of “transgender female/woman” as the shorter is how my transgender women friends identify themselves. A couple of whom have had menopause-like hot flashes. Sorry, gals! Would have spared you that if I could’ve, but, you know — estrogen!

*Why, yes, that Harry Potter reference earlier was a foreshadowing device. Nice of you to notice!

*We didn’t use “they” back then. Even so, “she” would have been appropriate in this context, but the anti-trans women would not allow themselves to use female pronouns for trans women.

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.)