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!
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!❤️
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!
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.
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.
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!
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!)
My Good Wolf 