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!

Fun and Games with Transcription and Closed Captioning

I really like both my voicemail transcription service and closed captioning (and subtitles) for a number of reasons. But the errors are sometimes quite … amusing, shall we say. Mistakes are in bold and correction in parentheses. Comments in italics.

Hi Debra it is Mona with confusion … (Infusion)

Hi Debra it is Mom with infusion … (Mona)

Put those first two together and that’s our relationship the last couple years of her life.

Hello this is Boss Kane mental health … (Bosque – pronounced boss-kay)

So, security answer = Rosebud?

Hi Debra this is Naomi calling from project with office … (Pacheco’s)

Ok, so my transcription AI is maybe just a little bit racist?

Andrew seven digit call back code is 347-15 to 6 Inc. you goodbye (And your) (3471526) (Thank you)

This took more brain power to work out than I care to admit!

… can connect you to a trained and Roman specialist who can help find a plan that your knees… (enrollment) (that fits your needs)

That last one may be my favorite so far. It is quite possible my knees do, in fact, require a “trained and Roman” specialist!

Stephen Colbert show captioning on YouTube app: “You’re all sharing the same spats and the same air” (space)

Trevor Noah show captioning on YouTube app: “We’re a mosque” (Wear a mask.) Really?!

Amber Ruffin show captioning on Peacock app: “… but because of KROOIFRSZ I’m not allowed to have an audience” (coronavirus) Seriously!?!

Seriously! I paused and took a screenshot to be sure to get the spelling right. Ms. Ruffin did not slur that word — no how, no way. No way, no how.

Young panda cub lies belly down on table , looking at camera/viewer
I did not keep that Amber Ruffin captioning screenshot, because I need to save space for important mental health supporting images such as the panda cub cuteness, provided courtesy of the Smithsonian National Zoo!
Young panda cub, lying belly down on table, seen from the back. See soles of hind paws and round, fluffy butt.
The end!

Tales from the Infusion Clinic

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.

Dearie, you are not a hummingbird! Photo description: Male ladderback woodpecker hangs precariously from red base of hummingbird feeder.

*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!

I’m a woman of contradictions. I adore yellow/golden flowers, fish, birds, etc. Photo description: Wealth of sunflowers surround a wooden post with a partially obscured house number and a light fixture.