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!)

In the Merry Old Month of May

May is Lupus Awareness Month. May is also Myositis Awareness Month. Mental Health Awareness Month, too.

First is May Day (big to the Germans who raised me), plus our doggie Draymond’s birthday. On the Fourth everyone becomes a Star Wars parodist; May the Fourth be with you! Followed by Cinco de Mayo, on which day far too many Americans pronounce beers something very much like cervezas. Then there’s Mother’s Day, of course, and World Lupus Day a few days after that.

And about two weeks after that is the anniversary of when I took the plunge and bought the domain for this blog with high hopes — or maybe slightly elevated hopes — and various ideas and a plan of sorts. George Floyd’s murder was broadcast two days later, I think.

Black and white photograph of a cliff side. Digital pencil enhance shadows to create appearance of face with prominent nose, dark sunglasses, and neutral expression. — The Hills Have Sunglasses by DÅL|é

So, yeah, May is a busy month for me! I’m having a flare of my type of myositis (the best, most interesting type, obv) in honor of the occasion. I’m not being facetious. Well, I am about dermatomyositis being the best of the muscle-depleting autoimmune diseases, but not so much about the timing of this flare.

Events were set in motion last May from which I have yet to recover. We’d suffered so many losses at the end of 2019 and in 2020 — pets and people — and were enjoying a slight respite early 2021. We adopted a puppy. He chewed his way into our hearts for a month. Then he was stolen on May 5th. Never found. Many folks were supportive and sympathetic. Some, not. Some, really not. Because social media is truly bizarre. It can easily magnify both compassion and cruelty. A double-edged sword type thing. Reminds me of prednisone.

A creamy white puppy sits on a ramp with back to camera and adorable face looking over right shoulder at photographer. — Data, the Great Pyrenees-Saint Bernard puppy who wreaked joy on our lives April of 2021.

The day before that violation, we realized there was no way we could sell our unique, beautiful business property, the erstwhile AirDance ArtSpace, to the guy with the community art center idea, as we had hoped. We had a pretty good offer with a hitch from people wanting to relocate their church. Community didn’t really need another church in our opinion, but … We made a counteroffer, sans hitch. Like you do.

They accepted our counteroffer the day after puppy Data was stolen. Or same day? I don’t have the energy to look it up. Point is, we were locked in by May 6th. Rather long, confusing, ugly story, short; we closed nearly 4 months later on August 25th.

Building with mission style adobe façade surrounded by blame of snow. Under a minimalist clock are silver block letters which read “AIRDANCE ARTSPACE” — The one and only AirDance ArtSpace, November 2000-August 2021

And then there’s Mother’s Day and the ever-so triggering onslaught of ads on what to buy and do — and, I dare say, think and feel — to honor and cherish one’s maternal parent. I’ll try to write about my mother in another post soon. She died in 2004. Yes, I think about her quite a bit, even now, nearly 18 years later. She really hated Mother’s Day.

I have agonized over how to “make a comeback” to my blog. My drafts folder is full of rejects. My new motto is Good Enough. Let go of perfection. And super high standards. And other people’s standards. Not as easy as it may sound to some of you. I feel guilty for things I’ve dreamt about. For questionable acts other people have done over which I’ve had no control. At 59 years of age I still worry about getting/being in trouble!

I’m going to close out this post with a tale of my trip to the infusion clinic. I was a week overdue, which makes a noticeable difference for a drug given monthly. I’ve experienced various delays over the last several months, mostly due to shipping issues. The fallback is prednisone. And that’s a whole other epic saga of tears and compromises.

Closeup of four bright yellow flowers, open in broad cups, sit atop green succulent cactus. — Prickly pear cactus in bloom

To get to the clinic I had to get out of bed, brush my teeth, dress, eat a little something, take meds, get in the car. Monumental achievements! I gave myself pep talks; took short rest breaks between tasks. Balked at the thought of styling my hair. (But the winds of May currently dictate the style for all who dare outside. In other words, Mess is in! It’s good enough! Thanks, Wind!) My thighs barely propelled me up the ramp. By the time I reached the counter, I was done, my hands and shoulders complaining about using the rollator.

Here’s where it comes together. I was signing a form at check-in and asked for the date, just before realizing it was the Fourth. The staff member and I chuckled and said, “The Fourth. May the Fourth be with you!” at the same time, much to the delight of the waiting drug rep. Then I asked the year. And I meant it. Because even as I wrote 2022, my brain, exhausted by the symptoms of my active myositis, lupus, and mental illnesses, was not convinced all those two’s were in the right order. I did not want to get in trouble for putting the wrong date on an official form! Doubly so with medical insurance involved! But did I have the energy to get out my phone? Plus eyeglasses?! I just want to sit down before this nausea gets worse.

Large black dog with some white markings lies on side cuddling toy squirrels under chin. Looks endearingly at camera. — This is Roo, a young dog of many passions. He’s way into these squirrels! He likes them two at a time. Such a Gemini! (First birthday on 13 June)

Infusion helped, by the way. Along with slight uptick in prednisone. And a great deal of sleep, which, of course, led to a blinding migraine, causing me to cancel on a couple folks (or hubster did; literally blinding), which naturally intensified my feelings of guilt — as if I am in control of the many and varied factors that contribute to the courses of my still little understood and largely unpredictable diseases — and now I’m just talking to myself …

Maybe I’m always just talking to myself? Not sure. Whether yes or no, it’ll have to be Good Enough.

Small short-faced black dog considers/noses a small rectangular toy which reads #SPOILED — Draymond celebrates zer fourth birthday with a new squeaky toy! Spoiled is synonymous with deserving in our dear Dray’s dictionary!

Meme-oh-graphics and Meme Mentos

Stuff I’ve collected during my long dark journey of the psyche these last many taciturn months. I will reveal some of my top secret adventures in due course. Meanwhile, some stuff …

That last line from *Fight Club* just feels ever so apropos!

Late 2019 and into 2020 death seemed all around us and especially close by. Late 2021 into this year has been something of a sequel. Plus pandemic season 3. (Series 3 for you Brit types?) What to do?! Before, I’ve had things to do and energy with which to do them. But this time, I shut down. It’s not easy finding a new starter for a 59 year old model!

I have rhupus hands! Woohoo! When lupus affects the hands as does rheumatoid arthritis. (No, I did not buy this product.)

At times I still can’t believe how much Nixon administration we retained through Reagan, Bush I, Bush II, Trump. Or more accurately, always there in the shadows, maneuvering, dealing, etc?

Voicemail transcription reads, in part, “Yes, … this is Kathy with the brownie OK honey fear of elections” — What Kathy said was, “Bernalillo [burn-a-Leo] County Bureau of Elections” 😂 Sooo… is my voicemail transcription service racist, still unable to familiarize itself with the Spanish words of my county and my therapist’s office? Gotta say, “brownie OK honey fear of elections” is surreal comedy gold!

Much of the best parts of our fabulous state of New Mexico is ablaze this month of May. None of the fires are truly near us in Albuquerque, but I feel the devastation all the same.

Red convertible sports car distorted, lumpy, as if metal body swollen due to allergic reaction. Caption reads, “My face two weeks after starting prednisone again.” — My face will never be the same after repeated forays into the Danger ‘Sone! (Source: r/lupus)

Yoda seen reclining with eyes closed. Text reads, “Once I got lupus I finally understood the scene where Yoda gets so tired of life’s bullshit he just dies.” — My face will never be the same after repeated forays into the Danger ‘Sone! (Source: r/lupus)

When the going gets tough, the tough get going. Because it’s their time to shine, to get going, do their thing. Right there in the name. They’ve been waiting, the tough have. Laid in supplies. Got the proper tires, presumably. Meanwhile, the tender can just take a break — yes?!

Moon in pale golden light about 2/3 risen over gently sloped hillside, silhouetting desert scrub — March’s Worm Moon rising over the Sandia Mountains. *Aka* Sleepy Moon, Moon of the Winds, Chaste Moon, Windy Moon and in Southern Hemisphere, Harvest Moon, Corn Moon. Photo by Jeff Hartzer.