Tag: loss

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!

Meme-oh-graphics and Meme Mentos

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?
Voicemail transcription reads, in part, “Yes, … this is Kathy with the brownie OK honey fear of elections”
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.

Red convertible sports car distorted, lumpy, as if metal body swollen due to allergic reaction. Caption reads, “My face two weeks after starting prednisone again.”
My face will never be the same after repeated forays into the Danger ‘Sone! (Source: r/lupus)
Yoda seen reclining with eyes closed. Text reads, “Once I got lupus I finally understood the scene where Yoda gets so tired of life’s bullshit he just dies.”
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?!

Moon in pale golden light about 2/3 risen over gently sloped hillside, silhouetting desert scrub
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.

Mind Too Full Thoughts with Deb Whatsherface

Content note: I should probably write this before — no, wait, after I finish this post — (Should Em dashes ideally appear as pairs? The brain fog force is strong in this one! Brain fogorce? Foghornorce? Fogotorçé?) — but I’m trying to just go with it, down the line, as it were, in my nonlinear mind-state. So, beware, I guess. Be aware. Always. But not hyper aware. (Why no hyphen? Why?!) All things considered, I’ll probably use a swear word or two; whinge about my life with lupus and friends; possibly make mention of my September-grief connection; and reference mental illness and suicide, but not really get into it, because I’m a coward, which isn’t fair, I know, but I said it and there it is.

I’m having trouble finishing a thought.

Whatshisface is in spellcheck but not whatsherface or whatstheirface. Spellcheck is officially behind the times! Both truly unrelated and strangely connected, schizzinosamente is Italian for finically, the adverbial form of finicky. Schizzinosamente … wow!

Also, wow: I believe we have adopted the real-life, American-Aussie puppy version of Bitzer the sheepdog from Shaun the Sheep! Minus the hat. And the wristwatch.

“I’m grateful I don’t have any human children to disappoint right now, just this goofy puppy,” is probably not the best way to express my gratitude for having 3-month-old Roo galumphing* around the house and crawling under the bed I just can’t quite get out of today.

The scene I can’t stop playing in my head: The man sat still, huddled next to his wife, clutching his newborn child, on the verge of surrendering to his need to acknowledge the utter devastation they three had just barely survived in great, wet sobs, while the reporter relayed their harrowing ordeal of losing everything but their lives to the hurricane. Then the reporter asked the man, “How do you stay positive after all this?” The man looked into his child’s face and tears escaped his hold. A portrait of love and penetrating loss. “What the fuck is wrong with you?” I yelled at the reporter. At the television, that is. I have mixed feelings about the media.

Toxic positivity. Sounds like an oxymoron. I hate it. And yet … I’m experiencing the irony of wanting to get through this exacerbation or flare of autoimmune disease activity (flare for short, although I’m seeing flair more and more in this context lately, which is hilarious to me**), so that I can fully appreciate and finish reading the post by chronically ill writer, activist, and icon Brianne Benness, titled, “The Myth of Getting Better.” How long will this flare go on? Will I still have a left eyebrow when it’s over? I have a mosquito bite over my right eyebrow and one between the two. There should be a rule prohibiting assaults to the face. Not the face! Not–The–Faaaaccce!!

Black and white young puppy sits atop folded clothes in a drawer on the floor.
Roo is an opportunist.

Who decided kiwi fruit pairs best with strawberries? Do strawberries grow well in New Zealand? When I was a kid, we tried to tame wild Cascade/Mt. Rainier strawberries, but life at sea level didn’t quite agree with them. I totally relate. We had better luck with the regular kind. And it’s Euro-American buddy, rhubarb. Etymology of rhubarb hints at ancient (long-standing) belief that plant has medicinal, anti-rheumatic properties. There is evidence supporting that belief. And the nutrient combo in strawberries can relieve gout. I’m not saying a slice of strawberry-rhubarb pie is an anti-rheumatic treatment that could and maybe should be prescribed for the likes of one Underlying Conditions Lady, to be ingested, say, once a week, but … If people can sue hospitals to force the administration of a de-wormer for their loved ones in ICU ailing with a deadly virus, against medical advice and all available evidence, then I’d like to have my next mobility aid prescribed and fully covered by insurance without any hassle whatsoever, thank you very much!

Strawberries grow in cute little leafy plants connected by runners. Raspberries and blackberries grow in brambles. Thorny, overgrown, fruit-bearing brambles might be a good metaphor for our modern American, medical-insurance system, scheme-thingy. Complex complex. There’s no way to get to most of the fruit without getting hurt. The more you need, the more tangled, difficult, and painful the journey. You may get lost along the way. Sooner or later, there will be blood. It’s both compelling and repulsive. You just can’t stay away. Neither can those around you. It provides in numerous ways for many more living beings than are casually noticed. It is a natural barrier to some and a home to others. Occasionally, though all conditions portend a generous harvest, the pickings are rather slim and the only explanation is that it’s all behaving rather schizzinosamente. The easily accessible benefits are not accessible or easy or beneficial for all takers nor as advertised. But they do look good. And you know, you can’t please all the people all the time. That usually means fucking over the disabled.

You know that cannabis-infused syrup*** made solely from agave, blueberries, and medical marijuana I bought a little while back? Well, get this; it tastes exactly like agave syrup infused with blueberries and weed! Amazeballs! It’s like taking a little lick of agave crushed together with a plump, ripe blueberry right off the hoof of the horse that stomped on the sweet combo while standing there, waiting for its stall to be mucked out. Allegedly.

In between throwing the box into the recycling and putting the frozen meal into the microwave, I entered a state of confusion about the nature of its contents; as in, Are those green beans? Cool! That’s how thick my brain fogotorçé is right now. (Okay, yes, I had to go back to the beginning to check the spelling of my made up word that I’m kinda proud of.)

I’m having trouble finishing more than thoughts.

Should I be proud? Isn’t pride a sin? Of the deadly variety, in fact. A gang of white girls from my junior high put the beatdown on my white ass in the parking lot of a record store because I was “conceited” and “didn’t know my place”. Allegedly. One of those I will never forget moments. Unless I do. I’m Jewish. With moderate asthma. And thick thighs. Raised by a divorced German woman, an African-American man, and another, older German. I’m not sure what disqualified me from cheerleading, being on the Honor Council, campaigning for my Latina friend in a scoliosis brace to be class VP, and dating a popular guy of a social class a couple-three tiers above mine and theirs, but I believe it was at least one of those things I could not change, if not a combo.

I don’t believe in sin. I don’t entirely understand the concept. I mean, I do and I don’t. I believe in disappointment. And being bad. My being a bad person. Not because I’ve done bad things. Because I am broken. Wrong. Down to my core. Not due to original sin. No, it’s a depression thing. Clinical Depression, both inherited and acquired. The mental illness that ultimately killed my mother. Trauma and alcoholism were contributing factors. And that last doctor of hers that I’m not supposed to talk about.

I am listening to Paradise Lost, the 2009 audiobook. I could never finish the print version …

Black and white puppy lounges in recliner, its head cocked to one side, a paw on the chair’s arm
The Casual Puppy

Why is the declaration, “Your mother would be so proud of you!” meant to be comforting? Why is pride in oneself a sin against Divinity, but a desirable pain reliever if obtained by a parent’s ghost? Allegedly. My mother loved me. That was enough. I’d rather she’d been proud of herself. Better yet, if she could have loved herself. Would she have been proud if I had loved myself? If I do so now, I do it for me.

News of Michael K. Williams’ death (6 Sep 2021) hit me as hard as that of Chadwick Boseman (28 Aug 2020). September. Had to be September. Or as close as makes no difference. The death month. In Christian/Julian/commercial-enterprise-the-world-over calendar terms, that is. The month of my sister’s death. My mother’s. 9/11. Never forget! Just one day after World Suicide Prevention Day. The month of my aunt’s birthday. My mother’s sister. Hers was the death that broke my mother. For the last time. The month of the High Holidays, usually. Or at least New Years, Jewishtically speaking.

Happy New Year 5782 to all the Jews tuning in! No one else cares. At all. You’d think the nefarious cabal of Semites set on world domination that Henry Ford, et al., warned about would have insisted on putting the aforementioned solar calendar on the back burner in favor of a certain lunar almanac, but … not so much. And yes, the word cabal is etymologically rooted in the word Kabbalah. Oy ge– Wait. Scheiße! What is it? There’s Oy vey, short for Oy vey iz mir! and, Oy ge– WTF? What is it? ¡Mierda! Fogotorçé rocks my world! Wow, predictive text has already cached my word! Meanwhile, autocorrect is trying to keep it clean in alles las lenguas.

My husband of 34 years is pretty sick right now. Not as sick as he was yesterday or the day before that. I’m hoping he’s getting better — really, truly. We have lived together for 36 years; first 22 months in sin. Neither of us is up for playing with the puppy right now. Hat or no hat.

Yesterday, I came up with an excellent metaphor for perfectionism. It was so good I thought I would remember it, foggy flare-flair and all. So, I didn’t make note of it and now it’s gone, which feels oddly appropriate.

From what I can gather, there are about as many Native Americans living in the US right now as there are Jews. Supposedly, some indigenous peoples of the Americas buried dead fish with their seedling crops. Maybe still do. We did that, when I was a kid. We white females and Black male hoed and troweled in fish heads and guts with the baby collards and beets and rhubarb. Death and rebirth. My mother’s happiest time was probably her 8 years on the Navajo reservation.

Roo is very possibly the happiest puppy to ever galumph across the face of the earth! He is perfectly imperfect, odd, and wonderful. I am thankful. I am in love. I may be feeling some pride.

Oy gevalt! That’s it!

I want pie.

Bust of black and white puppy with endearing expression on face
Our boy Roo at 11 weeks of age

*Roo’s galumphing consists of gawky galloping, pouncing, attempted and occasionally successful leaping, and glorious slides and spills. Roo also enjoys playing with Dray while making strangely childlike noises and sleeping while growing at a nearly audible rate. And chewing trees! Well, a bit of everything, really, but twigs and branches are great, apparently. Tree bark is good, too. Oh, so good!

**One of my fave movie quotes to take out of context and use in reference to my disease flares is, “I don’t really like talking about my flair,” from Officespace, delivered by Jennifer Aniston’s beleaguered and minimally flair’d chain-restaurant server character. Does my flare have flair? Can my flair flare? The flair of my flare is … (I’ll stop now.)

***I know it’s for cooking. Relax, people! Here, just put a drop of this stuff on your tongue …