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!

If You Make That Face

Hit again and ‘gain
Two-fisted hammered
My face just won’t crack

Made that face long ‘go
And, indeed, it did
It stayed that way

Now my well-made face
At once young and old
Has no home with me

Bring down the hammer
Chips off the old block
Is all I can do

Proof in the pudding
I lack the strength
To destroy myself



Copyright 21 August 2020
Revised 19 April 2021
Closeup of black puppy face with protective cone around head, looking forlorn yet adorable
THAT face is absolutely priceless! (Super Puppy Draymond survived this indignity — I swear!)

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.

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.