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.

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!)

Collaborating with My Wolf (part 3)

Fight or Flight or Freeze or …fuggedaboudit — pronounced di-ˈnī(-ə)l! Or … work it out. Cooperate. Negotiate. Give and take. Federate.

Federate? Yeah, no. I’m going to have to forego alliteration here and stick with my go-to word for my favorite type of artistic process: collaborate.

For me, collaboration is not just working together. Rather, it is an intimate process of channeling different perspectives and talents toward a common goal. It’s often challenging and sometimes counterintuitive. It demands consideration (meaning deliberation, examination, attentiveness, respect) and letting go. In my experience, the most rewarding collaborative experiences involve a lot of letting go. Collaboration may not be the best process for every project, but when it works well, different visions and approaches accommodate each other and create something wholly unique that would not have been conceived without all those adaptations along the way.

So, what on this bluish orb teeming with life do I mean by collaborating with my Wolf? How do I accommodate and adapt to and with these diseases? Diseases of unknown causes, at that. Does collaboration mean we will never struggle? Hahahaha! Sorry, I meant to say, no. Hell no! Collaboration is a very different approach than fighting, to declaring oneself a warrior against a foe, but that doesn’t mean a collaborative effort will be free of conflict. No, not at all.

Originally, I titled this series, “Collaborating with a Predator” — then I quickly realized that sounded as if I were aiding and abetting the likes of Jeffrey Epstein. Nope! Hell no! Hell no to the 10th power! I just wanted to convey my idea that my systemic lupus is wolf-like, not just because of the Latin nomenclature, but due to its near-predatory nature. Wolves are true predators, organisms that primarily obtain food by hunting, killing, and consuming other organisms. Sharks are predators. So are humans. And Venus flytraps. Sea slugs, too. But I digress…

Obviously, I’m going for an analogy here. Metaphor, even. I think. But, clearly lupus is not an organism.* It does not hunt for food to bring back to its den of adorable, baby antibody luppies. But it is like a predator in that it claims its host as its territory and causes damage to the organs and tissues within by killing healthy cells. All sorts of prey all over its territory. (SLE is one of the more wide-ranging autoimmune diseases, quite the omnivore.) All this killing depletes the host and almost appears to feed the disease. It may not be accurate to say lupus targets its prey, but it has its favorites: skin, kidneys, heart, lungs, brain. Blood. Joints. Mucous membranes. And without intervention, it just keeps inflicting damage.

So, collaborating with a predator, something that naturally kills and for which there is no current means of eradication — a cure, in this case. There are treatments, attempts to tame the beast, if you will. Beat it back into remission, into hiding. But while some might protect the organs for a time, they may not help the person feel better. Or to know how to live with this enigmatic disease. This refractory disease.

“Lupus is an inflammatory, refractory disease.” That is one of the most affirming sentences my lovely rheumatologist has said unto my self-deprecating person. Refractory, as in resistant to treatment. So, it’s not my fault! This thing is just obstinate. And wily. Almost, slippery. I gotta learn to live with it. Even as it keeps changing, adapting.

I live with several chronic diseases. (It’s crowded round here. No wonder I’ve gained weight!)* One of them, asthma, has been with me since birth. Thankfully, my asthma has been well controlled for decades now. But that was not the case when I was young. As a child, I was persuaded to fight through asthma attacks — to “persevere” — despite drowning in mid air. I had a number of close calls. But hey, whatever doesn’t kill you, may damage your bronchi and your confidence in the adults assigned with your care.

I was told I would grow out of my asthma, but in my first college go-round, the miasma of chem labs and major personal stressors took my asthma to a whole new level. (Yes, I enjoyed that!) I had to stop fighting — on more than one front — and decide to accept and work with my chronic health condition. That shift in mindset led me to change my college major and my long term goals in really big ways — neither quick nor easy, but oh so necessary — and to become an advocate of affordable healthcare and accessibility services to boot.

In 2019, after a long internal struggle about social media, I joined Twitter.* Eventually I found the disability community there. My people! People owning their everything. People fighting for accessibility, economic justice, dignity, respect — but not against themselves. Not against their disabilities. Or their defining conditions or illnesses. Not against who they are.

Embracing my identity as disabled and feeling welcome in a marginalized community has been key to my wanting to live and to live well as I am now. And becoming disabled and proud is a product of my collaborating with my Wolf.

The last five years presented so many significant life changes and challenges — serious illness and disability were not the only components of that big-ass iceberg*— that all together left me feeling unmoored and unsure who I was through much of it. Was I a dancer, still? Or no more, after 33 years? (33 years … It just had to be 33, did it?) What was my role now? What did I want to do? What could I do? Why does everything keep changing?

But now I have a new identity. One that embraces my current reality and enfolds my past roles as well. And a community. I have support. I can be disabled and proud. I can be sick and live well, which is so much harder to do than it is to say. Or type. But that’s all part of the learning, adapting, and letting go of collaborating with my Wolf.

So, I have a collaborator. Not the collaborator I wanted, to be sure. At times I still have difficulty fully accepting this rest-of-my-life companion. However, the more I do — the more I dive into the collaborative experience with my Wolf — the more I learn. The partnership allows me to explore my health and investigate what does and does not help me from that unique perspective. For example, I’m now thinking about my near lifelong sleep issues in a new way. Instead of trying to fit my problem into other people’s models, I have motivation and (dare I say it?) chutzpah to draw up something personal, bespoke, if you will. A combination of a rare sleep disorder, cyclical pain, hypervigilance á la PTSD, and behaviors I’ve adopted over the years that reenact (or attempt to do so) aspects of my childhood abuse. (That last bit may sound strange; however, conscious or unconscious, “re-victimizing” behaviors are not uncommon among survivors of childhood abuse. More on that in future posts.)

Likewise, I have started on a novel approach to the common and very frustrating symptom of brain fog. I’ll write more on that as I discover what works and what doesn’t. Allowing room for failure is vital! In a holistic sense, this partnership is deepening my understanding of some of my unconventional ideas about the practice of medicine from my days as a movement therapist. It has further illuminated for me the reactionary nature of our healthcare system that puts patients on the defensive. That incorporates shame in matters of disease avoidance and treatment, with a subtext connected to morality, sin, and redemption. I’m talking about so-called Western modern medicine and so-called alternative medicine both.

I’m still working this out. Or, trying to. Failing … Succeeding? Learning! Is that the space between winning and losing? Also known as Life?! That’s what this here blog is for, sharing my failures and thoughts and lupine whatnot. I don’t want to fight or be heroic or inspirational. I don’t even particularly want to be a fine example. I just want to be okay, as I am. Worthy. Disabled, yet worthy of consideration. And access. Accommodation. Even if I fail. Especially, when I fail.

Collaboration is the aim. Accepting the shifting sands, letting go, exploring unusual ideas, grieving, relinquishing harmful judgments, adapting, embracing vulnerability. Partnering with my autoimmune diseases promises a bumpy road ahead. And the potential for a life lived on my terms. And maybe a little enlightenment now and again. Which I will share with y’all.

In collaboration with my good Wolf, I shall howl!

One of the yuccas we care for showing off for the pollinators.

*Nor is lupus caused by an organism, as far as medicine knows. Just wtf lupus is — it’s hard to say, other than major malfunction of the immune system. “It” can “attack” almost any organ and system in the body. So it’s like the immune system is now under the direction of Snidley Whiplash? Or, Jared Kushner! My sincere sympathies for all good, decent people named Jared!

*I believe one doc thinks I’m a type of disease hoarder. Calmly practicing my hysterical magic, collecting ills for some ridiculous womanly reason. More on that in the future!

*@aqrobattz Do you get it? Well, do you? Huh? Do you? I mean, seriously, do you get it? Huh?**

**I apologize for the obnoxious neediness of that last footnote!

*Respectfully, aren’t all icebergs big-assed? (Asking for a friend.)

Collaborating with My Wolf (part 2)

The Lupus Foundation of America (LFA) dubs its members with lupus, lupus warriors. Being cast as a perennial fighter due to chronic disease is not just an LFA thing. I’m also a migraine warrior, according to more than one support site/online community. Although I haven’t seen similar troop-like nomenclature for my other ills (Sjögren’s soldier? Nope. Myositis mercenary? Nah.), the notion of being thrust into battle with one’s disease is pervasive in many, if not most, types of medicine, wellness, healing, adjunct support groups, etc. A diagnosis serves as an induction notice.

Assigning the role of warrior to folks with lupus and other chronic illnesses seems to work for a lot of people. If it works for you, I am sincerely happy for you! I have no desire to dilute or deny something that helps others. At the same time, it really doesn’t work for me. And I’m confident I’m not alone. Well, pretty sure. Kinda sorta … Okay, my neurotic tendencies aside, this is for all those other sick non-warriors out there.

As is the case for most people with lupus, getting to that diagnosis was a long slog for me. Three years before, I was diagnosed with dermatomyositis, a rare autoimmune disease of skin and muscle. And 7 syllables! Unaware at the time, I jumped into the warrior role. I was following expectations, if not orders. Medicine and wellness are designed around doing one’s individual utmost to get better, be well. Fight the good fight. It is your responsibility to procure the best medical care, provide for your changing needs, do the research (but be careful!), rise to the challenge and live right – eat, sleep, exercise, reduce stress just so. It ain’t easy. In fact, it’s so hard it takes the heroic efforts of a warrior. There are no guarantees. But there is the promise of “victory.”

So seductive! Of course I want to be healed, to feel better —and not just temporarily. Or at least regain some lost ground. I definitely want to be the good patient and do everything the right way. I’ve had more than my share of hardship,* so I know I can persist, can do hard work. And, um, yeah … I’ve fantasied about others recognizing my struggles, praising my fortitude. But after a couple tours of duty, I realized this mindset was a trap for me.

Because – and this is truly radical, in my opinion – there is no right or wrong here. Lupus is not my enemy. It is a mysterious disease process in which the immune system attacks healthy tissues in the body. While I like to anthropomorphize as much as the next guy,** there is no clearly identifiable cause of lupus (or my other diseases) like a pathogen to cast as nemesis, despite a lot of very good research. And my immune system continues to function as it is supposed to in some ways, while also malfunctioning. As we have learned in these pandemic times, the immune system is hella complicated!

No, I’m not going to start smoking cigarettes or anything clearly contrary to my living as well as I can. On the surface, not much has changed, really. But philosophically, I’m letting go of the notion that I have to fight to live well. I reject the idea that accepting my health as is and embracing my disabilities in order to best accommodate them is defeat. I’ve spent most of my life fearing I’ve done wrong, convinced I am wrong. I am so ready to be done with all that! I do not need to be anyone’s hero or inspiration. I just want to live well as I am. I accept myself as chronically ill and disabled woman living with my very own inner wolf.

One of our ornate box turtles takes it all in. (Photo description: Turtle with green head and red eyes, with neck extended, surveys environs.)

*Where do Hardship Shares get traded? NASDAQ? S&P? Why on earth did I stock up on those?

**Obviously, The Next Guy is your go-to expert when it comes to trading in hardship shares!