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.
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.
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.
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.
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.
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.
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 …
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!
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.
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?!
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!!
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 …
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.
*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 …
Content Note/(trigger warning): Among other things, the following post discusses death and grief and includes a brief description of a violent death.
Whelmed, am I. Totally and completely whelmed. More than that. Beyond whelmed. Uber whelmed. Utterly overwhelmed. Which is redundant, technically. (Look it up. I dare you!)
Welcome to Sunday morning thoughts with Underlying Conditions Lady in the midst of another prednisone-mediated lupus(+) flare. Here you’ll find a mixture of to-do lists, pain scales, grief, dogs at play, gratitude, shame, feelings of obligation, feelings of failure, loneliness, word etymologies, questions of science, questions of art, the letters P-T-S and D, and a few audiobook highlights, all in a misty fog, flavored with a soupçon of irritability á la that little bitter pill.
Prednisone, it’s a hell of a drug!*
I’m more than two weeks overdue for my monthly infusion of my DMARD, because of yet another urinary tract infection.* Antibiotics and my Biologic, a sophisticated immune system … modifier(?) … modulator(?) … Wolf tamer (?), do not get along. They’re rather at cross purposes. And this was a kidney infection, in truth. An aggressive affair. You know how colonizers be!
All I want to do is sleep. Which I do. Badly. That’s not really true. I’m working on the sleep thing. It has taken a lifetime and now chronic, debilitating illness (yeah, I said it) and the various resources of the internet to sort out which sleep disorders I do not have, the one I very well may have, the continuing role PTSD plays in my bedtime behaviors, and a commitment to being kind to myself to arrive at this place of lovingly addressing my sleep issues. That last part is the hardest. But you probably guessed that.
The Wolf in predator mode that is a flare of autoimmune disease activity and the common yet somehow extraordinary drug that is prednisone are at odds when it comes to sleep. They’re at odds regarding just about everything, really. Except they both destroy the body from within. They are terrible houseguests, awful to their hosts. No, that’s not it. It’s more like a hostage negotiation. In your home. With a repeat offender. And the only way to achieve any success is with that negotiator you hate, who wrecks your house — every single time — but is still the only one who knows how to keep the offender from stabbing you in the gut repeatedly.
But this post isn’t about having a flare. Or prednisone. Or sleep issues. It’s about … something. Being foggy? Overwhelmed. Needing a break. Ok, wanting a break. I want a guarantee that no more big stressors will hit until, say, after I finish the taxes. Yes, I know that won’t happen. I mean, I won’t even be able to get this post finished and published this sunny Sunday, due to the interruptions and intrusions of Life in the Foggy Brain Lane.
Did that sound whiny? Am I doing it? Am I doing it right?! My psychotherapist is a believer in whining. Moaning, that is. Expressing one’s pain out loud. I totally agree — in theory. For other people. Although I’ve been seeing this therapist for several months, she still feels new. Fresh. I like her a lot. I want to please her — and I know I need to be careful about that impulse, or at least aware of it — but, moaning out loud? Me? I mean, even my autocorrect avoids the word! Meaning … Moving … Morning?
What about … Mourning?
500,000 dead. Well over that. In just under a year of COVID-19 in the US. I correctly predicted the date we hit 150,000. Nailed 250,000. Was within two days of 350,000. Then I stopped that mental “exercise”. Not good for my mental health. And other things occupied my mind. Christmas in the ER. Not long after S moved out. Because her aunt died. Now it’s lonely here again. Then the insurrection was live on television. And Facebook. Reddit. Twitter. The ‘Gram. And then T died all of a sudden. I wanted to hug her mother for a week, but we just talked, masked, over the fence. Texted, a little. That was just a month after Aunt I died. (Not my aunt.) Valentine’s was Aunt P’s first yahrzeit. My Aunt P. But not only mine. I miss her. May 31st will be our dog Duke’s 14th birthday. If he gets there, that is. He’s been a very, very good boy.
This is about loss.
In less than a year five people died on our street. None from COVID-19. Not directly, at least. Three deaths were due to long-standing health problems that probably weren’t being treated as well as should have been due to pandemic conditions and were likewise exacerbated by the stressors of the pandemic and the lack of concern by so many for one’s fellow human being. One person died by an overdose that may have been intentional. And one death was of a man having a mental health crisis. Body cam footage shows he had a knife. The police disarmed him with several gunshots to his body at close range.
A descanso* marks the place up the street where he died. There was a small, peaceful, at times joyous protest there last summer. The cops parked a couple squad cars in the middle of our street, a couple doors down, and hubby and I, masked, watched them standing there, drinking sodas, talking and laughing easily with each other, their torsos heavy with armor and weaponry.
I’ve been dealing with loss all my life. I should have an honorary doctorate or two in loss by now. Except the older I get, the more unsure I feel about what I know. And don’t know. I know I feel a heaviness in our neighborhood. As if all this absence left by these losses and their rippling effects has a weight to it. We can bear this unseen weight, isolated behind masks well enough. For a while, at least. But, dense as it is, this absence is also weightless somehow. Intangible. Just out of reach. It hangs there — like a fog. Yes, time heals. But community is a balm like no other. Funerary rites are important. Displays of remembrance and communal grief. We need follow up, too. Restoration. Good grief. My neighborhood is hurting.
Good grief! I remember being very confused by Charlie Brown when I was a kid. Why was he shouting out grief? Aren’t you supposed to keep that sort of thing quiet, locked within you, gnawing at your joy and sanity slowly over time? And why did he keep playing football with punkster Lucy? Given my so-called best friend at the time told me in all sincerity that I was bound for Hell, I probably should just move on.
My basic thesis of loss has long been thus: Each relationship is unique. Each relationship makes an indelible impact on each party. The more intimate the relationship — for better, worse, both — the more intricate the connections. Death severs that relationship and thereby changes the survivor further. I had an Aunt P. I loved her. She loved me. I love her still. I am forever a person who was deeply affected and influenced by my Aunt P and now I am a person without her. I am grateful. Truly grateful. And I am sad. For the aunts and the many people who loved them. For my neighborhood. For our rabbits.* For my friends who are struggling in various states of isolation. For over half a million COVID-19 deaths here. For I don’t know how many around the world. For the healthy life I thought I would live in middle age. For my darling dog.
I grew up in the foggy Pacific Northwest. There I learned that sometimes it’s okay to drive through fog. But sometimes you are at its ephemeral mercy. You cannot control it. You have to accept its existence and wait for it to dissipate, to let you through. I suppose brain fog is like that. Maybe? Or maybe that’s grief. Or both. A heavy, obscuring blanket of emptiness. Impenetrable, even as you move right through it.
I’m just so sad.
I could use a break. But that’s not how it goes. One has to roll with the punches … adapt in order to survive … yadda yadda. No breaks guaranteed. Fine. In that case, I could use a good house cleaner. Must like dogs!
*Appreciation to Rick James and Dave Chappelle! (If you don’t understand that reference, well, I just can’t help you.)
*Autocorrect actually filled in, urinary Tracy infection. Apologies to all Tracy’s out there! Also, DMARD = disease-modifying, anti-rheumatic drug. Do you feel enlightened now? Well, do ya?!
*Descanso, a roadside memorial or marker that commemorates a site where a person died suddenly and unexpectedly.
*In the near future I will write about Bunnytown USA, a 25-year adventure that concluded just before that first lockdown of March 2020.