What is one question you hate to be asked? Explain.
Have you tried … yoga?
No. Sorry. I am not a judge.
{rimshot}
Have you tried … yoga?
I mean, back in college practically everybody was doing it.
{rimshot}
Have you tried … yoga?
Yoga? Really!? I didn’t know it was edible.
{rimshot}
So, is it sweet or savory? Hmm. Guess it’d have to be sweet, seeing as how so many (modern) Big Time Yogis turn out to be such unsavory characters!
{rimshot}
Seriously, it seems every Big Time Yogi is eventually exposed as corrupt, guilty of multiple counts of fraud, tax evasion, money laundering, sex crimes. Like the Bikram guy. And the Kundalini guy. Aided and abetted by Akal Security and Yogi Tea. Corporations aren’t just people, they’re enablers, too.
{rimjob}
Have you tried … yoga?
As what? Exercise? Spiritual practice? Anti-depressant? Miraculous immune system restorer? Panacea? Whatever will shut me up about my ills already?
{rim around the Rosie}
Have you tried … yoga?
In the words of the late, great Frank “Yoda” Oz, “There is no try, only do!”
{Rosie the Riveting}
Have you tried … yoga?
I’ve practiced a few different styles of yoga, starting when I was a child, learning poses from Lilias on PBS. I can no longer practice the type of yoga I most enjoyed. Most poses are beyond my current abilities. Recently, Downward Facing Dog joined the list.
{riveting run round}
Have you tried … yoga?
Instead of wanting, even expecting basic sympathy and a little understanding from someone like you?
Hey, have you tried … just not giving unsolicited advice? Or shutting the fuck up? Listening? Realizing we’re equal; that you are not my superior now that I am disabled, just as I was not your superior when my earnings, education, and/or abilities/circumstances outshone yours! (In the time before my immune system “turned heel,” that is.)
What about acceptance? Have you tried accepting reality? Not all disease and injury can be prevented. Or fixed. Not all lost ground can be recovered. Healing is a natural response to being hurt or sick. We are ever-changing, our cells rolling over constantly. A persistent state of perfect “wellness” is unnatural and unattainable.
{shot rimmed out}*
For the record, I move as best I can, as often as I can. Below are my two awesome personal trainers, Roo and Draymond.
Moon rising over waters at Bosque del Apache National Wildlife Refuge, one of my favorite places!
PROLOGUE:
While trying to stay afloat the summer heat waves, Doctor Rheumy #5 (number 6, if you count JustSeeANeurologist Guy)declared this here Lupine Lady an Anomaly of the Medical variety and referred Our Strangeness to the Mayo Clinic in Phoenix, Arizona. And I began composing the following. Eventually, the Good People of You Should Not Leave That Out in This Climate of All Places decided against our rendezvous. Nonetheless, change was afoot. (And is now a-neck!) Details on Turning the Corner coming soon, including Not a Miracle Healing by most standards, and Embracing Life after once again having a sudden sit-down with Death takes over a year, a ragtag village, fairy godmother’s wheelchair, and a very special dog named Draymond.
Z: Welcome to Better You Than Us!
A: Oh, hey — hello!
Z: How may we serve you? [Z hands menu to patron A]
A: Oh, um, okay. Yeah… [A speaks while perusing menu.] It’s just that I — Wow, you have that!? Sorry! I apologize. It’s just a really impressive menu! But, I think maybe an order was called in for me?
Z: No need for apologies! Everybody gets overwhelmed when they first step in here. They get confused. Grow lightheaded. Start crying. Faint. Or, some just get really angry. I am so glad you are not one of those angry ones. Uh … or are you?
A: No, not generally angry. Generation removed from free-floating rage. I’m more of a non-squeaky wheel type, trying in my Middle Ages to identify how and when to properly squeak.
Z: Excellent! My name is Zqwjj and I’ll be your waitstaff-helper-guide-person.
A: I’m Auuiy’o, person in need of wait-guidan— or, um, help. I need help. Obviously.
Z: All right! First things first. [Z checks electronic tablet.] We do have a third-party takeout order for you. Still needing insurance review and blood sacrifice, however.
A: Excuse me?!
Z: An Out of the Order (Nary) order of WhatIsWrongWithThisLadyPerson in a thick substrate of Gotta Be (Bloody) Rare was called in for you by Dr. TrulyGivesAShit.
A: I guess that’s what you call the pricey, intense, out-of-state, out-of-network, diagnostic work over— or, uh, workup, absent any and all guarantees for success?
Z: A week’s worth of poking, prodding, visualizing, repeating tests in all the ways, except this time with an air of self-righteousness and importance like you have never known and a very dry sense of … pretty much everything.
A: Surely, I’ll be granted the honor of paying for all that out of pocket, too — with my luck. While basking in the glory of the Sixth Circle of Hell!
Z: Oh … um …?! [Z worriedly checks tablet.] Says here your referral is to the Phoenix, Arizona clinic.
A: As I said, Sixth Circle; nicest one. You don’t offer a workup like that here, do you?
Z: Oh, no, no, no! However, we do cater the often long and soul-crushing waiting periods.You could start with our popular You Call That Accessible? crudités with I’m So Confused I Could Cry! dipping sauces.
A: That sounds … interesting.
Z: Are you being patronizing? The kind of patronizing a patron is not meant to be?
A: Sorry! It’s just … I, uh … I’m just not that excited about the whole Rising from the Ashes and Haboobs intensive deal right now. Not like I was.
Z: Ah. So, hold the Mayo?!
A: Yes, please.
Z: Sweet! Never had the opportunity to say that before! Professionally, I mean. [Z checks tablet.] Hmm… I see you have a long history of trauma and depression, and a complex medical profile, multiple autoimmune diseases (one rare), neurodivergent, lack of family support — lack of family, really —
A: Meaning?
Z: The Mayo may well hold itself.
A: What?!
Z: Even though there’s considerable evidence associating trauma, particularly ACEs (adverse childhood events), with autoimmune diseases — plus the fact that (worsening) depression is understandably common among those with autoimmune diseases — Mayo gets freaked out, if you will, by ongoing depression in cases like yours.
A: Anomalous rheumatology cases?
Z: Uh huh. Sure.
A: Rheumatological and apparently related conditions that overwhelmingly affect women and are therefore historically understudied, narrowly defined, and the sufferers maligned?
Z: As you said, “paternalistic.”
A: Did I? So … in cases of confusing, inconsistent test results and findings, blame the witches, oops, women as hysterical/borderline/whatever? Definitely do not find fault with the limits of current medical understanding?
Z: You’ve been misjudged before.
A: Last month I was told I was an entire medical practice’s one and only red flag. 1 out of 675. My occasional need for one particular type of legal medication is a stain on their otherwise spotless reputation.
Z: Ouch.
A: Been their patient for 9 years.
Z: Ah. May I suggest our Stir the Pot starter? Good for breaking out of stagnation.
A: No. Thanks. Actually, I think I’m ready to order my main course of action, now that Mayo’s off the table.
Z: Never good to leave the Mayo out on the table. [Z readies tablet for A’s order.] Now, what would you like?
A: [A reads from menu] Okay, I’d like an order of General Improvement, please, with greater ease of movement, no vertigo, clarity of mind, more stamina, normal digestive functioning, and significant reduction in pain.
Z: Well, I like the confidence, but …
A: Oh! And, an Abatement of Fear. On the side. [A closes menu.]
Z: [Tablet beeps and clicks briefly in Z’s hands.] Ah, yes, there are some, shall we say, compatibility issues with your current condition and that ask. Unless you want to start tithing? [Z looks at A who shows disapproval in no uncertain terms.] That’ll be a NO. Well, I’m sorry to say you’ve confused our General Improvement offering with our Full Remission special. But, from what I see here, I think an unassuming portion of General Improvement is a very good choice for you at this time.
A: Okay. What comes with that?
Z: You get your choice of greater ease of movement, reduced vertigo, and sporadic clarity of mind — OR — increased stamina, normal digestive function with rare, epic failures for no discernible reasons, and dizziness, no vertigo. Instead of reduction in pain, both choices come with better pain management. Served on a panorama of changing seasons or layered with an ever-evolving sense of peace with a series of devastating losses.
A: I see. Well, they’re both tempting, but I’ll go with the ease of movement/clarity of mind option with better pain management, layered with sense of peace stuff. And may I still have a side of Abatement of Fear?
Z: Yes, great choice! What flavor of Fear Abatement would you like? Milquetoast? Vague? Distinct? BlackWoman? HolyShit? Psychopath?
A: Distinct, please.
Z: Very nice. Now, how about a starter? OurPieInTheSkyHighHopes are popular.
A: No, thank you. Had it. That mix of sticky, sweet promise followed by enduring, bitter emptiness does not agree with me at all!
Z: Oh. [Z consults tablet.] Oh, right! My apologies! Of course, … That starter is not recommended for persons with Lupus.
A: Yup. Makes sense.
Z: For the Chronically Lupine, especially when ordering from our limited optimism menus, Hope Slivers and Cloud Linings, we usually recommend our Relativity Disclaimer starter, served with a delightful Cliché Blocker salsa.
A: Tell me about that.
Z: Our Relativity Disclaimer enhances the idiosyncratic nature of your main course, in this case, General Improvement. It’s all about how you feel now and not next week or last year. It’s not about you compared to someone else or somebody else’s idea of you.
A: Should I take that personally?
Z: Absolutely! It’s a bespoke savory starter. The Cliché Blocker salsa ranges from a mild, passive-aggressive, guess you mean well, to a hot, offensive, burn it all the fuck down. Medium is a spicy, assertive, be real or shut up.
A: Spicy, it is!
Z: Excellent! And for dessert? May I suggest a modest serving of our house specialty, Self-Acceptance, topped off with our renowned self-esteem boost, Is This Self-Love?
A: Oooh, I’ve always wanted to try that! But, I’ve heard it’s very rich.
Z: Oh, no, not really. You’ll be pleasantly surprised at how well Self-Acceptance complements General Improvement! Admittedly, Self-Acceptance can be difficult to digest, especially in combination with selections from our Stagnation and Decline menus. But for the disabled, especially the dynamically disabled like yourself, Self-Acceptance is often described as light and refreshing. Also fleeting, for many. You could probably indulge daily, if you wanted. Best part: Just save whatever you can’t finish for another time. It never goes bad.
A: Self-Acceptance never goes bad? No matter what?!
Z: Think about it.
A: What about the folks who claim it can have an enduring aftertaste?
Z: Consider the source.
A: Privileged, healthy, able-bodied people who perceive chronic illness and disability as threats to their worldview? Oh …
Z: So, that’s an unassuming order of General Improvement, with greater ease of movement, decreased vertigo, and sporadic clarity of mind, plus better pain management. For your side, a distinctAbatement of Fear. For starter, Relativity Disclaimer with spicyCliché Blocker. And for dessert, Self-Acceptance, with a self-esteem boost of Is This Self-Love? Anything else?
A: Hold the Mayo.
Z: Done. Expires 6 months after issued. If properly stored, that is. Just FYI.
A: Noted.
Z: So, proceed?
A: Yes, let’s move on. Thank you!
Z: My pleasure! And soon, yours, too!
Hey! Shouldn’t you tell me where? ‘Cause I don’t know!
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.
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!
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!
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!
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.
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.
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.
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.
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.
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.
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.
Draymond celebrates zer fourth birthday with a new squeaky toy! Spoiled is synonymous with deserving in our dear Dray’s dictionary!
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!Safety is an illusion, too. So, sleep well!😁Replace raincoat with windbreaker. Better make it fireproof!
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?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.
My face will never be the same after repeated forays into the Danger ‘Sone! (Source: r/lupus)So, you’re saying that was not a healthy shade of green for Yoda? (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?!
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.
My Good Wolf 