Goodbye Julie Julia
This one's tough. Last night, word started coming across the twitter feed on my phone that Julie Powell died unexpectedly at the young age of 49 due to cardiac arrest. I immediately wondered if it might be Covid-related.
I am what you'd call an unexpected fan of Julie's story. While I have a standard list of movies that I stop and watch while "channel surfing" (with the likes of Shawshank Redemption and Jaws,) my wife has a similar list that includes anything Nancy Meyer, of course The Devil Wears Prada, and the 2009 movie Julie and Julia. I had an atypical bond with Amy Adams character, Julie Powell as I am also a blogger and envied her meteoric rise.
Of course, every time we watched the film, I'd inevitably break out Meryl Streep's "beef bourguignon" followed by Dan Aykroyd's SNL "save the liver" skit also shown in the film.
As the steroids used for my IVIG infusions for my Long Covid journey once again wreaked havoc with my sleep last night, I reached for my phone in darkness at 4AM and started to see Julie's connection with my online Long Covid community. A day before her death, she tweeted about her "black hairy tongue" and that her doctor dismissed it and said it would go away. (I'll preface the above and below with the fact that I'm not a doctor nor have I intimately followed her Covid journey or symptoms.) As Dr. Sarah Parcak tweeted,
"So, what you don't read in the NYT obit: beloved author Julie Powell had covid 6 weeks ago (she tweeted a bunch about it). There are countless men and women getting heart attacks, strokes, and blood clots following their infections. The covid public health disaster is infinite."
I've always stated that mortality should be the number one focus of Covid, but we're now seeing that "tsunami effect" that I keep talking about. That's the people suffering with what seems to be (in many cases like mine) permanent damage from Covid due to PASC (post-acute sequelae of COVID-19) or "Long Covid." We are now seeing PASC go from debilitating to deadly.
My (damaged) heart goes out to Julie's family as they're reconciling her death and won't make this about me, but I will make it about that tsunami that our government and society is ignoring. We have short attention spans in this country and as I've said here, the country has suffered from "story fatigue" on Covid just as we have with the Russian invasion of Ukraine.
One of my more graphic and least watched YouTube video blogs used the movie Alien as a metaphor for the madness brewing in my chest in the "chest burster scene." Not far from the truth as I've had many a night with my chest (in the area of my heart) going mad.
Exacerbating the issue was Joe Biden infamously going on 60 minutes stating the "Pandemic is over....we still have a problem with Covid" as he walked through a Detroit Auto Show. He went on to say, "everybody seem to be in pretty good shape." I have thrown most of my political blame on the deranged orange "circus peanut" (see Mad Vax post) but Joe now shares equally in the blame for the apathy around Covid and Long Covid.
Despite the obvious tragedy, Julie Powell's tweet from the day before struck a familiar chord with me. I have been (almost to a fault) been relentless in my treatment and have aligned myself with some of the best in this country; including five trips to Mayo Clinic, my new Long Covid clinic (RTHM) in California and Oregon, and locally at National Jewish Health and UC Health.
Despite that incredible team, we still are in a "research phase" of Long Covid and I've had more than my share of doctors pulling from the pre-Covid shelf of medical books and diagnoses. I can distinctly recall sitting on the white paper topped examination table and telling a lung doctor that it felt like "organs are cooking inside my chest" dating back to 2020. The response was facial expressions of befuddlement and dismissal--just like Julie's black hairy tongue.
My journey early on was marked with eliminating everything other than Covid or Long Covid; in part due to the fact that I'm part of the "first wave" club being sick now for 33 months (January '20.) Part of the follow-up for that "burning" description were "elimination" tests including gastrointestinal tests including a GERD test ruling out acid reflux. This isn't a reaction to a spicy burrito. I have vascular inflammation and suspect inflammation of the heart. More recently I had a doctor ask if my chest spasms were hiccups. I'll repeat, I know what a fart is, and I know what a hiccup is and my spasms are neither.
My anxiety was already at a peak as I'd received my latest "biomarker" panel yesterday from Radiance Diagnostics ordered by RTHM. Not surprised, my T-Cells were high and other monocytes were ridiculously low. This after other biomarker tests have fundamentally shown my immune system is "shot" and my inflammation is "off the charts." Googling at 4AM is not a good idea as my nonclassical (LH [CD14LO,CD16+]) monocytes were 2.1 with a "standard range" of 25.5 to 40.
My Google search revealed an image showing arrows pointing to my heart so I turned the screen dark. Not a good idea. Short of being a hypochondriac, my "bizarre" symptoms don't stop with my chest. I'm sure related to my broken immune system, ordinary cuts take longer to heal. I have odd "blotches" on my skin, and equally alarming is my continued cognition issues.
Not making this about me with Julie's tragic death, I'm not alone as I'm one of upwards of 33M Americans with Long Covid. Sounds absolutely shitty to say, but perhaps some good can come out of this. I don't know what it will take to wake up our government and even our deaf tone CDC and Director Wollensky to wake the fuck up. We don't need more deaths to shine a light on this topic, but perhaps more famous names need to take the story to the Hill like Dave Navarro (from Jane's Addiction) who also suffers from Long Covid.
Rochelle Wallensky's latest posturing (prior to her coming down with Covid) talked about "washing hands" to help thwart the dangers of respiratory dangers including RSV and Covid-19. No mention of masking. Herd immunity is an absolute joke, yet I'm also not naïve in that a reversal on masking recommendations or policy won't happen.
Not ironic, two other "Long Covid Superstars," Resia Pretorius and David Putrino are meeting this week at the Icahn School of Medicine at Mount Sinai to share their studies and "hopefully" bring more ubiquitous testing around "microclots" as the leading theory or culprit in this largely "stealth" and now as we're seeing deadly culprit with Long Covid.
As I learned from years of sales meetings in my previous (what now seems end of) career, there would always be a final slide on problems or what needs to be fixed. The best sales leaders always added the "what needs to be done" versus just complaining. I went into my thoughts in much greater detail (HERE) but funding, research, ubiquity (and affordable) long Covid clinics, education of the medical community, and Social Security reform are desperately needed.
Dark Brandon needs to go darker and put the "paddle cards" on the three dead House Bills that are collecting dust and frankly don't come close to addressing the above before more people like me meet their own literal defibrillator paddles.