SeekingBostonMarathon

The Painful Lies About Long Covid

2026-06-03T07:52:03.908-07:00

I made an attempt to reply to the atrocious hack piece by Alan Levinovitz’ online at Wired the day it came out on Monday, but everything hurt. I had my second (CT) scan as part of a prerequisite for my stage IV cancer treatment at UC Health in Denver. Laying on the hard scan bed after the weekend “did me in”—my pelvis, lower back, kidney-area ribs and shoulder all hurt too much. I took notes from the Apple News article on the sofa—extra strength Tylenol didn’t cut the pain, and it was too early to take my nighttime pain medication. Before I discuss the Wired piece, I think it’s important to understand my story as I’m one of the 20-30M Americans afflicted with Long Covid—my case goes back to international travel in the first quarter of the pandemic in 2020.

I thought the Jeff Wise (“Long Covid Comes Into the Light” in Slate Magazine) and Natalie Shure (“We Might Have Long Covid All Wrong,” in The New Republic) hack pieces telling us that Long Covid was fiction was behind us, but along came Allen and Wired Magazine.

Author’s note: Like Allen, I will anonymize or change some of the names and portions of this story to protect those involved.

I spent the better part of 2020 trying to figure out what was wrong with me after virtually racing for my Team Hoyt buddy Liam on March 15, 2020. I remember that date well as the world shut down that weekend. The race was cancelled and my wife (Mrs SBM,) and I went to Fort Collins for the weekend as we knew we’d be sequestered for weeks, or months. Fearing the unknown, we wiped down doorknobs and phones in our hotel room as the guidance was just starting to come out about the deadly virus called Covid-19.

The last race I ever ran. Virtual 13.1 for Liam Mar. 15, 2020

I virtually ran the 13.1 miles for Liam that day, we went out for dinner—I dressed in my kilt as it was also St. Patricks Day—we headed for our favorite bar in downtown FoCo but I walked in and out of the bar just like the Simpson’s meme where Grandpa Simpson walks in, hangs his hat, puts his hat back on, and walks out of the bar.

The next morning, I had a “crash” unlike anything I’d ever had; marathon hangovers were easier than this half. I knew then that the “garden variety virus” I’d been wrestling with for two months was something more serious.

Within two months, I couldn’t run a mile dispelling one of Allen’s myths that part of part of the Long Covid myth is deconditioning. Having raced for twenty years, I know about taking breaks after a big race and what deconditioning looks like. This was not deconditioning. This was “not a boat accident!” This was what would eventually be diagnosed as Long Covid.

I spent the better part of 2020 going to National Jewish Hospital in Denver performing every lung and heart test they had to understand my initial overnight dyspnea (shortness of breath) severe fatigue, chest madness, and violent leg “spasms.”

When traditional tests had no answers, Dr. Goldstein recommended I go to “Ketchup Clinic” in Minnesota (reminder that some names have been changed in this article.) I went through a battery of test over 72 hours and would return another three times looking for answers.

It was world class care, but I also encountered my first case of “world class gaslighting.” I sat down with one of their cardiologists and he proceeded to to tell me a story about one of his patients who had a urination issue (insert irony parallel three years later.) The patient wanted to go to the bathroom before sitting down with the doctor but doc said, he had a few questions first.

The gaslighting doctor talked to the patient for twenty minutes when he finally asked the patient, “I thought you had to go to the bathroom?” Befuddled, the patient said he guessed he didn’t need to go. The whole point of his bullshit story to me was that my difficulty breathing was “all in my head.”

The “Ketchup Clinic” for me was not a complete waste, Dr Van diagnosed me with Long Covid and helped document my case for eventual private insurance and Social Security Disability. He also said that they’ve seen this “movie before” in that post-acute illnesses (or viral persistence) have been around forever (even Long Covid Villain RFK Jr recognizes that in Lyme disease—see RFK Jr.’s commitment to Lyme just this week.)

The Wired piece does make some factual points; RECOVER spent $1B in observation studies and had little to show for it. There are no universally accepted tests or biomarkers nor treatments that exist for Long Covid.

He shares cases where patients are fully-recovered, and did quote Claire Every a patient who runs a Long Covid advocacy group in the UK, “it’s quite soul destroying as someone with severe long covid to be told that its either your trauma or your emotions, or your mental framing.”

Todd Davenport speaks to the labels associated with Long Covid in the article: “they get lazy and they get crazy,” but today retorted on X, “It’s always odd seeing your quotes used in service of a narrative but not supporting that narrative and totally out of context with the actual conversation that took place.”

The “un-Wired” hack piece had zero well-known Long Covid Experts quoted in the article. There was no Akiko, Putrino, Proal, Peluso, Resia,or Kell’s—but he did dismiss the later two experts hypothesis that the culprit was microclots.

Dershowitz did have lots of rage rage bait in the article;

“Rats can acquire a food aversion after eating food that makes them sick. Their gut reprograms their brain, and they will exhibit reflexive distaste for the food.”

“His wife, also a medical professional, became frantic. She thought Larson must be mentally ill—despite clear physical symptoms like inflammatory arthritis—and urged him to try antidepressants.”

“multiple studies have shown that self reports of crashes don’t line up with with researchers findings in controlled settings.”

I’m calling bullshit on that last quote, and redlining most of his article. Annie Leibovitz does interview some of his experts that fit his OpEd narrative including Becca Kennedy who was the former lead of a multistate Long Covid specialty group for Kaiser Permanente, Dr John Sarno (of Howard Stern fame,) and Howard Schubiner.

I’ll save you the time; their approach is a combination of GET (graded exercise therapy,) CBT (cognitive behavioral therapy,) and it’s “all in your head.”

Been there, done that.

I tried running two months after that cataclysmic 13.1 mile virtual race on March 15, 2020. I couldn’t run a block. Under expert care, I also tried three different GET programs—the last one was halted by the physical therapist as she saw the decline and damage before her own eyes that the incremental treatment (stretches, increased walking on the treadmill, light weights) was doing to my body. Six months prior I was a fitness fiend—often winning age-group podiums in run races and triathlons in the competitive Denver/Boulder run market.

I tried CBT as my eventual disability insurance benefits saw somewhere in my doctors notes that I try CBT (cognitive behavioral therapy)—I would have been better off trying CBD (or THC.)

Desperate to find something that helped, I also went through a (very expensive) version of brain retraining from BrainCode in Highlands Ranch. The only result was being over $5K lighter in the wallet for that treatment alone. I’ve spent well over $100K in medical bills since 2020, and cost me a million in lost future wages as a former software sales executive. All for the glamour of the sofa in my family room.

Perhaps Levinovitz or Kennedy or Schubiner can explain how my mind conjured up vasculitis, micro clots, endothelial damage, mitochondria damage, small fiber neuropathy and an immune system that was so diminished, I required IVIG infusions in 2022.

Perhaps Annie Leibovitz can also explain how the brain study I flew to Boston for with Dr Michael VanElzakker from Harvard Mass General Brigham Women’s Hospital scanned my brain and other study participants and found brain damage—not fog, not imagined. Brain damage.

I won’t link to the 1000’s of papers that describe the biological—NOT psychological damage that Long Covid can do, but I’ll quote Michael Hoerger, PhD MSCR MBA from X who replied to to the Wired piece yesterday;

As a clinical health psychologist who has written >20 papers on COVID, I would emphasize 4 facts:

1) Long COVID is not a psychological diagnosis nor manifestation of a psychological condition

2) Billions of dollars need to be invested in biomedical treatments and preventives, and that money is not being invested because of wealthy short-term interests, which prop up various narratives, including in the media

3) Behavioral interventions can help with infection/reinfection prevention (e.g., COVI-CAN pilot) and stress/coping support (gaslighting/ostracism as huge issues), but these are not cures, and the same interventions are relevant to people with cancer, organ failure, immunocompromising conditions, etc.

4) Many psychological/behavioral “treatments” for Long COVID are directly harmful to patients and are indirectly harmful to society by incorrectly framing the issues

I would consider these issues obvious in summer 2020.

Articles like this should not be written in 2026, but it is a consequences of cultural evolution, or organizational selection by consequences. The organizations that write puff pieces propping up pseudoscience get the gold, while truth tellers do not. It would be useful to examine the organizational practices at WIRED that led to the incentive systems that allowed this piece to manifest.

Lastly, I should point out to Mr Mankiewicz that I’ve lost friends to Long Covid—people ARE DYING FROM THIS. Me personally? With my documented broken immune system (as documented by actual blood tests,) my oncologist said that it either caused or exacerbated my stage IV cancer.

But don’t take my word for it, take a REAL Long Covid expert’s word from it; Akiko Iwasaki from Yale on The Butterfly Pavilion Podcast (hosted by myself and my daughter trying to find light in darkness along my stage IV cancer journey.)

(There are) “A few different ways in which a virus like SARS-CoV2 can lead to cancer.”

Before all the hate mail, no, a Covid infection won’t give you cancer, but a single infection (and exponentially with multiple infections,) can lead to Long Covid. and Long Covid can lead make you immunocompromised.

In other words, Long Covid is no joke, not imagined, and I wouldn’t wish it on my worst enemies—even Mr. Fawn Liebowitz.

I’ll anxiously await the retraction from Wired.

Follow my Long Covid and cancer journey on The Butterfly Pavilion Podcast.

Dragon's Breath

2026-05-29T05:00:00.000-07:00

Super excited to have Nikki back in the studio of The Butterfly Pavilion Podcast. Despite Ty’s sarcasm, Nikki was NOT in a contract dispute, she started a new job (Dad is super proud,) so she’s been super busy while we’ve had our first guests the last few months; Akiko, Putrino, and Jonathan Howard all talking different aspects of Long Covid. Taking a slight twist this month as we talk television (and streaming) influences over our lives. We open with some poignant comments from a book my wife read from her book club through Sharon McMahon (SharonSaysSo,) “Between Two Kingdoms” by Suleika Jaouad. A powerful book about a young woman hit with cancer, going through treatment, then trying to find herself after successful round(s) of treatment.

I found a lot in common with her journey despite; the decades difference in our age, I’ve never met Oprah, nor been on Stephen Colbert. I did party in my ‘20’s in New York City, have dealt with a myriad of personal interactions with my cancer, and have seen the toll it takes on my wife as a caregiver. Hope you enjoy the episode as much as we did.

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Guest inquiries, feedback (good kind only) email us: butterflypavilionpod@gmail.com

How to Talk to Someone With Cancer

2026-05-04T14:29:00.000-07:00

When I got the news in my oncologist’s office that I had stage IV cancer, he uttered the words…something to the effect of “we knew your numbers were high; it’s not good news.” They didn’t send us home with a pamphlet on how to manage life with cancer, how to talk to your (adult age) kids, family, or friends. We left with nothing but the salt of our tears still in our cheeks.

The absolute toughest conversations were that day. My favorite (West Coast) Aunt was in town for Thanksgiving. We summoned her from my sister’s house. My daughter was out-of-state, my other two boys were working. Eventually we had a quorum in the family room in front of the unlit fireplace. I couldn’t make eye contact and used similar words; “it’s not good news” eventually making eye contact with Aunt Marge who had lost two partners to cancer.

Since then, I’ve grown to accept my situation (most days,) and try and live by the mantra of the podcast (The Butterfly Pavilion Podcast) that I started with my daughter to talk about life stories and living with cancer—”finding light in darkness.” It may sound cliche, and I can’t always live by those words in practice. Today, I sang in the shower, I threw seeds along the back fence hoping they’d grow. That was me finding light in darkness.

Reactions and coping mechanisms for family and friends have varied from slightly putting feelings in a box on the shelf to ignore, to showing empathy (but not quite knowing what to say or do,) and in the case of my wife and daughter; exemplary balance of love, support, and quite often knowing what to say. Those aren’t the only two; I’ve had steaks sent from a cousin, all sorts of gifts and food from another, cards, and low level activity crafts. All meant to show that I’m loved and being thought of. It’s appreciated.

As I often share with those closest to me, I don’t want sympathy, but with those close to me it would be nice to have empathy. As the days and weeks go by, as the cancer is treated, as it simmers as a volcano, or percolating again, people quite often don’t know what to say. We’ve talked about it ad nauseum on the podcast in a number of episodes.

Perhaps the above is important for one to understand the feelings we might be going through as context for conversations you may have with me or someone that’s seriously ill. The most often used phrase is, “well, you look good.” While having a conversation is appreciated and the phrase is well-intentioned, it doesn’t always “land well.” It may not reflect the pain, emotions or fatigue that are smoldering in that volcano.

Early on, I would send either emails or texts to the family and close friends as the news and appointments are exhausting and as I learned with long Covid, even talking at length can wear me out, and multiplying that by x is not possible.

With that, I’ve compiled a list of perhaps what to say, or what not to say; especially if I’ve taken the time to share a cancer update.

When someone is suffering or shares a health update; it’s okay to say;

How are you holding up?

How are you doing?

Are you okay?

I don’t know what to say, but I’m thinking of you.

Is there anything I can do? (most often, no, but the offer is nice.)

I'm sorry, how are you?

Are you in any pain, are you exhausted? (most often yes, and yes.)

I don't understand, what does that mean?

What's next?

If I’ve taken the time to update, don’t simply reply with an emoji.

Sorry, but a heart emoji used for a cute puppy video shouldn’t be the same tool used for “I’ve stopped responding to treatment, or my numbers are growing.” Not replying at all, or ignoring it altogether deserves an angry or thumbs down emoji back to you. This isn’t meant as a “calling out” measure, but an attempt to help us both.

Ignoring can be painful especially if it’s someone close to you. I had a close family member that didn’t say a thing for over two years. That’s weird. Having said that, my wife helps keep me centered and we both subscribe to the theory of expecting a specific reaction from someone that doesn’t happen is setting one’s self up for disappointment.

While the above is used in the event of an update; it can be used over time in conversations or simply reaching out. I had a good friend from High School say in conversation, “I don’t really know what to say” was met by my response of, “you just did”—meaning, I could tell that he cared and I was in his thoughts. Use your own words, but the above could help if you’re struggling to find the words.

I met with another friend of over 30 years who I used to work with over dinner with a small group of friends from the same group. As we were saying our goodbyes, the laughter turned to tears welling up in his eyes, and I hugged him without crying myself. I told him I was okay; or at least that night at that dinner I was. He told me I was brave. I could tell that he genuinely cared. Thanks Ken. I appreciated that.

Well done.

Akiko Iwasaki: Finding Light in Darkness Podcast

2026-01-05T12:19:00.000-08:00

We had the privilege of interviewing over Thanksgiving week on The Butterfly Pavilion Podcast with Akiko Iwasaki from Yale University. I have been following Akiko for a few years now and she is also one of my long Covid Heroes.

Iwasaki is a Sterling Professor of Immunobiology at the Yale University School of Medicine. Her research focuses on the mechanisms of immune defense against viruses. Forbes 50 over 50 Innovation 2024, TIME 100 Most Influential People 2024,Keio Medical Science Prize in 2025.

I have been afflicted by long Covid since infection in January of 2020 and X became a good source of research around the topic. She has a huge following there and I'm fortunate to have her follow me and have the occasional engagement with her on that platform.

We covered a variety of topics including some of my history around long Covid and stage IV cancer. The outline of topics covered and ending like we often do with movie quotes--she was a good sport engaging with us there.

1) Introductions

2) At the holiday dinner table, how would you convince someone that long Covid is real that believes it's a hoax, or has never heard of it?

3) Impact on the research community given cutbacks this year.

4) Given long Covid is a heterogeneous disease with upwards of 200 symptoms, how do you summarize or categorize patients?

5) Why do some people get Long Covid while other(s) don't from a Covid-19 infection?

6) ME/CFS vs long Covid? Overlap, or different conditions requiring different research?

7) Correlation between long Covid and Cancer?

8) Vaccine injury vs long Covid?

9) Promising trials/treatments.

Listen to the Episode on Apple Podcasts

Listen to the Episode on Spotify

Watch the Episode on YouTube

The Butterfly Pavilion Podcast is a father and daughter podcast about his stage IV cancer journey and trying to find light in darkness along the journey. Ty also has long Covid.

Tree Hugger

2025-09-22T09:35:00.000-07:00

Perhaps the most misleading blog post title, "Tree Hugger." Almost as confusing as someone that was obsessed with unicorns (and the Boston Marathon) for years as a runner, and now talks about butterflies.

Like, what the H, E, double hockey sticks is he talking about now???

The latest episode of the Butterfly Pavilion Podcast, is "Tree Hugger." You'll have to listen to get the full reference, but has a story reference with Anna-Nicole (now Nikki and co-host of the Butterfly Pavilion Podcast.)

So, wander over to Spotify (HERE) or Apple Podcast (HERE) and listen to the latest episode of our podcast; "finding light in darkness" along my stage IV cancer journey. Or watch and subscribe to the Butterfly Pavilion Podcast on YouTube.

Butterflies and Unicorns

2025-08-01T09:06:00.000-07:00

First off, let me apologize for the long lapse in blogging. The last year has been a physical challenge as I've been treating my stage IV cancer. Huge props to my team at UC Health and CU Anschutz. I'm fortunate to be working with the same urology oncology department as Deion Sanders who announced this week that he's been treated and underwent a bladder transplant for bladder cancer. I'm the less famous patient.

You can imagine that blogging has been a low priority as I've been treated for my prostate cancer that's metastasized to bone. Last summer I underwent chemotherapy and for the last 18 months I have been treated with hormone deprivation therapy--think of cancer as a dinosaur and testosterone is the dino's food. Kill the food source to try and slow down Jurassic Park.

I'm not saying that my blogging days are over, but with my limited (low) energy, I have shifted focus to a new podcast. My daughter approached me with the idea of recording stories and conversation for prosperity and perhaps for grandkids someday to listen and watch (YouTube channel)

"The Butterfly Pavilion Podcast" hosted by my amazing daughter. We figured, why not turn it into a podcast. You'll have to give it a listen to understand why butterflies when everything with the blog has been all about the unicorn and the Boston Marathon; and subsequently long Covid advocacy since its' inception.

The feedback of the podcast has been overwhelming. A work colleague of 25 years emailed me this week and shared that he (very) recently discovered he was diagnosed with stage III multiple myeloma and an associated right lung mass. Devastating news, but he was touched by our podcast sharing, "Your daughter’s idea and connection are so special."

We both thought that (like my long Covid advocacy) perhaps my story and trying to find light in darkness might somehow touch or help someone with a similar experience. Don't get me wrong, that time between diagnosis in November 2023, and our first appointment in January of 2024, I had no idea if I had six months or six years to live--prognosis ultimately was 2-8 years but that's best effort medical prognosis.

I was devastated. Many sleepless nights and lots of tears. I can't say that I'm carefree but I try to listen to the inspiration of Nightbirde from America's Got Talent--she had an amazing outlook on life but ultimately succumbed to her cancer.

Anyway, we have released three podcast episodes thus far with "Purple Delight" coming out today (August 1, 2025.) Our goal is to provide updates on treatment but focus more on living life and telling a few funny or heartfelt stories along the way.

As always, you can keep in touch on the below socials as 140 characters are a lot easier that writing a full blog post--this summer has had a summer cold/sinus infection that's dragged on for two months that has really wiped me out. Cancer on top of long Covid is no joke, but we tell a few on our podcast.

https://www.instagram.com/butterflypavilionpod/

https://www.instagram.com/seekingbostonmarathon/

https://www.youtube.com/@thebutterflypavilionpodcast

https://x.com/seeksboston26mi

https://bsky.app/profile/seekingboston.bsky.social

https://www.youtube.com/@SeekingBoston

https://podcasts.apple.com/us/podcast/the-butterfly-pavilion-podcast/id1818183637

https://open.spotify.com/show/5YPniI4Pf9GLYOmJ2Fd6Bx

Be well, and thanks for all the support and love.

Last Christmas?

2024-12-11T10:12:00.000-08:00

I had a long and vivid dream and wake up as the sun is deciding to rise. I'm congested which made my mouth parched breathing through my mouth. I reach for my drawer full of meds organized in small rectanguar wood boxes for the decongestant spray.

My medications are organized into morning and evening and know which order they're lined up so I reach for them in the dark. My late mother used the same brand of spray as I'd commandeered a bottle of it from her home when she'd passed. We lived there while liquidating her estate. I've since bought more than a few of her Synex sprays, but still haven't used up all of the Reynolds aluminum foil she'd stocked up on. I lay there for a moment after clearing my breathways (thanks mom) and realize I may also have to pee.

I debate for a few minutes and slowly get out of our king-sized bad and try not to disturb my wife and twin bijon pups that nestle up against Mrs Seeking Boston. It's dark in the room. I skip putting on the robe even though it's quite cold with a recent dusting of snow.

As I make the first few steps on the cold hardwood floor, my pelvis has sharp pain. The stage four prostate cancer has metastisized to the bone. I steady myself for the first few steps with the long dresser at the foot of the bed on the way to our bathroom. My prostate and bladder debate whether or not it's time to go and they both decide it's okay to go.

I return to the bedroom as I see the silhouette of the Christmas tree in the front window of the Living Room. A dark yet light reminder that I survived one year since my diagnosis but I wonder if this is the last time I'll see the tree.

I'm not a defeatist but the pain of late brings the devil in my thoughts at night of my mortality. I return to bed and take a few gulps of cold water from my metal water bottle. I take my Zytiga which is part of my hormone deprivation cancer treatment.

As the cancer feeds off my testosterone, the pills diminish the hormone. I equate it to cancer is a dinosaur and testosterone is it's food we have to deprive it from. It's cold in the room and I check the Nest thermostat from the app on my phone and it's 62 degrees. I turn it up to 65 as it's our preferred temperature. I like it cold as a symptom of the drug is hot flashes.

My wife jokes that it's my "manopause." I pull the cool sheets and comforter up to my chin. I hear my wife half awake. I roll over close to her and wrap my left arm around her warm body. She tells me that one of the twins is behind her. She tells me this as "Finch" who is sometimes sensitive to abrupt touch--this would disrupt the morning peace. I kiss her on the forehead and tell her I love her. Half asleep she returns the phrase. I hold the embrace for another moment and roll back over to pull up the heating pad from the floor and set it to the medium setting and place it on my pelvis after taking something for the pain. I'm at peace and hope that all three of my (adult) kids can make it for Christmas. I drift off to sleep again.

When Long Covid Combusts into Turbo Cancer

2024-06-21T12:03:00.000-07:00

It's been awhile since I've updated the social universe beyond the snippets on x (formerly known as twitter) and Instagram on my cancer journey (see Feb post.) Or better named, "how much can a man take over four and half years of Long Covid and now stage IV cancer?"

So here it goes...

Yesterday was supposed to be my sixth and final chemotherapy session for prostate cancer that spread throughout my body in the bones; mainly pelvic bone pain, ribs (ironically located in the same area where I had my triathlon race accident--four broken ribs in 2014) and other areas. I'll get back to the "supposed" part later in this post.

The last two months have presented a cumulative effect of the chemotherapy which was expected. "Virgin Territory" is treating and dealing with cancer on top of Long Covid. I'd say that the first four chemo sessions were somewhat "mild" (if that's a thing) as I was dosed with anti-nausea medications so that part was not near as bad as I'd expected.

I would say that the first night (of each session) was a challenge and best way to describe it is being poisoned which in essence I was. With the "breadth" of the spread of the cancer, radiation (directed at a particular area) was not an option so "napalming" the body with chemo along with hormone deprivation (pills and shots) where the goal is to take the PSA (prostate specific antigen) down below the 1-4 normal range has been the strategy.

I jinxed myself by throwing it out into the universe that the first four went chemo treatments went reasonably well albeit with an added fatigue component on top of my already fatigued Long Covid body. Session number five packed a "wallop" as the normal 24 hours of poisoning was four days.

Somewhere along the way my oncologist recommended some strength training and trying walks around the block (can you say GET, or "graded exercise therapy--see my John Oliver YouTube post on that topic.) Around the 4-5 chemo round, I did try something I hadn't done in (perhaps) years and that's trying a walk around the block. Post-exertion malaise (PEM) or PESE (Post Exertion Symptom Exacerbation) was very real as it created a series of crashes that sent me to the hospital four times. So much for that feeble attempt to try mild exercise.

I'd clarify and expand by saying I have a great deal of confidence in my oncologist, Dr Eule (eye-lee) from UC Health Anchutz campus in Denver. It's a bonus that his PA, Erin who I see on alternate dates is an elite runner herself so it's good to have a common language with her and I'm equally impressed with her approach and experience.

One thing (that's impressive) and unique to UC Health is they have an oncology urgent care inside the hospital with the full resources of a hospital emergency department (ED) with doctors, equipment, and radiology. Over the four visits to the specialty urgent care and ED was ultimately diagnosed as pneumonia--repeat, "can this guy get a break!"

With an already compromised immune system and inflammation with Long Covid, this puts me "behind the eight ball" as chemotherapy lowers this even further--in my case, Dr. Eule used Docetaxel which is intended to stop the growth of cancer cells by blocking cell division.

Last week's visit to the oncology urgent care like the previous visits was tied to the most severe dyspnea (shortness of breath) I've had in four and a half years. This might best be amplified with my first Costco wheelchair shopping cart experience. I wanted to join my wife for the outing but there was no way I could walk the half mile around Costco, so "no shame in my game," I wheeled around as she shopped.

The attending PA (physicians assistant) at UC Health ordered another CT-scan of my lungs to compare to the one I had in May with the pneumonia. The interesting (and not good interesting) comparison was that the radiologist noticed an increase of inflammation in my lungs which they attributed to (or exacerbated by) my Long Covid.

This makes me wonder if inflammation has played a part in the dyspnea that's debilitated me for 4.5 years, but alas I digress.

Dr Eule up to this point had made (as I'd expect) many of the decisions left up to me (and Mrs. SBM); to enter into chemo in the first place, to continue after pneumonia for treatment number five, but number six was different in that he recommended against it as;

1) there really aren't studies around benefits of five vs six vs seven chemo treatments.

2) this would be considered "completed" chemo treatments that would have me eligible for future studies or treatments like Pluvicto that I'm highly interested in trying, and

3) the risk of further and permanent damage to the lungs didn't outweigh the reward of one final treatment.

4) previous CT scan showed expected "scabbing" of the pelvic area cancer lesions showing that chemotherapy was doing its' thing.

Overall, we left happy with the decision not to have one last "Putin cocktail."

In terms of next steps, I'll go in for a full scan again in July followed by another oncology consult to review resulting benefits of chemo and what's next. What's interesting that I learned yesterday is that a continual monitoring of my PSA levels not only is a barometer of my prostate cancer but also of the cancer in the bone areas of my body as it's technically prostate cancer in the bones.

That was the other area of optimism is that my PSA went from a meteoric rate of 117 at it's highest (again normal range is 1-4) and down to a .28 yesterday.

From a macro standpoint of Long Covid and cancer, my take is that the studies on correlation between Covid-19 and cancer are too new but emerging. What I can say is that my oncologist said that my "aggressive" cancer (I'd prefer mild) was likely caused or certainly accelerated by my Long Covid; damaged immune system, inflammation, and the industry fact that up to 20% of cancers are virus-born.

I've mentioned Akiko Iwasaki (Long Covid Hero) talking about (above) the concerns and potential correlation between Long Covid and cancer in Fortune, and earlier this month Washington Post posits, " ‘Unusual’ cancers emerged after the pandemic. Doctors ask if covid is to blame." Just this week, there was an even more damning study out of Japan stating, "SARS-CoV-2 infection increases the risk of worse outcomes in cancer patients, including those with breast cancer."

I'd suspect to see more and more studies and correlation between Covid-19, Long Covid, and cancer.

So what does this all mean? For one, we should continue to take Covid-19 as a serious pandemic illness that we know very little about. While society has moved on, the fact is that Covid infections continue to happen and result in Long Covid. While Long Covid does not necessarily mean you will get cancer, do you want to take the chance? Live your life, but understand the potential consequences of infections or multiple infections.

I'd end with that most of videos end with "Invest, Protect, and Reform." Too many tangents and details to delve into what that means (from my perspective,) but in terms of investment (at least in the U.S.) we need to continue to push our legislators including Senator Bernie Sanders to push through his (hopefully initial) $10B "moonshot."

June 2024 CT Scan showing inflammation of the lungs

Footnote: Fun fact. What do marathon runners and chemotherapy patients have in common? A "badge of honor" for runners is the black toenail that will inevitably fall off. Little did I know the same things happens with chemo, but I never lost a fingernail in a run race (or triathlon.)

The Vilification of Anthony Fauci

2024-06-04T14:24:00.000-07:00

Footnote: Since I announced that I have cancer at the end of 2023, you can imagine that blogging has been the furthest thing from my mind. For those that have kept up with my cancer recovery on top of my Long Covid journey on X (formerly known as Twitter,) Instagram, YouTube, and Tiktok, I thank you. While I may not live to understand the correlation between cancer and Long Covid in my lifetime, scientists are starting to draw inferences such as Akiko Iwasaki Akiko Iwasaki in Fortune Magazine. "Inside Long Covid's War on the Body: Researchers are trying to find out whether the virus has the potential to cause cancer."

While I can't say with 100% certainty that Long Covid lead to cancer, I do know that; I was cancer free from a full-body PET scan at the end of 2020, I have a broken immune system, I have a body rife with inflammation due to Long Covid, and my oncologist said the (later two factors) very likely lead to stage IV cancer.

I have completed five of six sessions of chemotherapy and up until the fifth one last week, I'd say I managed them well for the most part except fatigue from Long Covid plus cancer and chemo is no joke as my level of energy is the worst it's ever been and have had increased dyspnea (shortness of breath) of late. Chemo number five packed a wallop that wiped me out for nearly four days. When people ask, what it's like, most often I reply that it feels like I've been poisoned. Will be glad to get through this.

Just as I have with Long Covid, my wife and I (Mrs SBM) and I have tried to live a full life even if that's working on a puzzle with my limited energy. Last month, I pulled off what was perhaps the best day of my life orchestrating a "surprise" wedding proposal and vow renewal with the help of my daughter, Nikki.*

Since we gained hope from my oncologist in January, it's been an emotional roller-coaster as you'd expect. Many days we have optimism to live as long and full a life as possible; and other days I break down and cry when she talks about perhaps moving to Europe and I know I won't be there to enjoy it with her.

As John Oliver would say (still waiting for him to cover Long Covid,) on "Last Week Tonight," moving on, our main story tonight covers the most targeted villain of the Covid Pandemic, Anthony Fauci.

source Wapo

On Monday Cruella de Vil aka Marjorie Taylor Greene lead a crucifixion of Anthony Fauci over the management of Covid-19. The Republican-lead House panel covered topics ranging from social distancing and masking to the origins of the virus from Wuhan labs. MTG hammered away at Dr Fauci (refusing to refer to him as a Dr) complete with sympathetic graphics of cruel puppy experiments.

A literal "dog whistle;" (use of coded or suggestive language in political messaging to garner support from a particular group) the White Coat Waste Project from 2021 had absolutely ZERO to do with Covid, or Long Covid, but it makes for great theatre. There are questions around the project and Fauci's funding of the testing but I won't go down that rabbit hole in this post.

Perhaps the best coverage I came across yesterday was from Dan Diamond from the Washington Post, "the infectious-disease expert (Fauci) said Republicans have distorted emails between scientists as they discussed whether a lab leak of the coronavirus was possible."

"The hearing with Fauci, widely viewed as the face of the United States' coronavirus response, drew a circus-style environment to a covid panel that has often struggled for attention as the public has moved on from the pandemic."

To clarify the cobwebs in my own brain, I "googled," how is Covid transmitted. The CDC and WHO have pretty much the same definition. It's airborne (stupid,) so it baffles me that there's much in the way of debate about masking or social distancing. Let's use another analogy. If someone caught leprosy, would you want to be in the same room with them? No--they were banished to islands (see--Hawaii leper colony.) Yes, it was a thing, because you couldn't be far enough away from the infected.

It almost seems as if we forgot the refrigerated morgues in parking lots in 2020 or the "super spreader" event at the football match in Italy. They weren't having sex in the stands or doing blood transfusions at the match dubbed "game zero." They were BREATHING on each other. I had to look this one up. With the virus already entering the news, officials decided to proceed anyway with the match in February of 2020. It literally spread like wildfire after that in Europe.

There are countless studies that show the efficacy of wearing masks to prevent (or minimize the risk) of Covid infections including this one from Yale.

Yet Republicans were "clutching their pearls" yesterday suggesting Fauci sent people to their certain deaths by recommending guidelines. This is a good time for me to point out that I believe wearing a mask or using your own guidelines around social events is a PERSONAL choice. We lost the war of ubiquitous mask wearing as people wanted to move on with their lives. I get it. I do think that healthcare settings still make sense, but I'm not going to (pun intended) die on that Hill.

Boebert and Greene "time travel" to when America had to deal with Polio

What it does mean that if you encounter a stranger that's wearing a mask, they aren't the anti-Christ--they just want to protect themselves which is a personal freedom here in American.

Yet, the GOP fights like hell to deny science. A close family member is dating a "red hat" and he's constantly posting anti-masking on his Facebook page--so the GOP strategy worked. Republicans are hard-core against masks (even in healthcare) and they can't let go of the fact that protective measures were put in place to save lives.

So, how did it become political? In my first "Last Week Tonight" post from 2021, I tackled the subject and it all has to do with the Commander in Chief, Mango Mussolini who can never admit a mistake. When the pandemic rolled out, he didn't want it to affect the economy, approval ratings, or re-election chances so he initially downplayed it ("it will be gone by Easter.")

source: Science.org, Politico via AP

He mocked it (and mocked mask-wearing) and embraced a "cuckoo for cocoa puffs" science strategy with notions of bright lights, bleach, Ivermectin, and the Future Doctors of America vs. U.S. Agencies with decades of experience in infectious disease.

Just downright batshit crazy stuff. But once he bet on that trajectory, he could never admit that he was wrong so he (to this day) double-downed on it. My opinion is that, with the election coming up, no doubt his (mis)management of the Coronavirus will be a campaign topic so enter in the crazies to find a scapegoat--none better than the guy who had to rub his forehead at some of the lunacy spewing out of the White House briefings--Dr. Anthony Fauci.

You're beginning to understand which side of the ledger I fall on when it comes to Fauci. Personally, I believe the man dedicated his life to fighting and preventing infectious disease. I'm glad that many have come to his defense--shocker--real scientists and more shocking, Democrats.

Science.org stated, "Democrats rushed to defend the record of the longtime adviser to presidents, who retired in 2022. “Under the guise of investigating the pandemic’s origins, House Republicans have abdicated their responsibility to objectively examine how COVID-19 came to be, and instead weaponized concerns about a lab-related origin to fuel sentiment against our nation’s scientists and public health officials for partisan gain,” said Representative Raul Ruiz (CA), the panel’s ranking Democrat."

The one area that I haven't addressed was the "gain of function" topic. The Republicans tried to create a smoking gun yesterday, but were unsuccessful. I'd have to admit, I (with Long Covid and cancer) don't have the energy to do a "Watergate" investigation of Fauci on this point. I don't believe he's a James Bond Villain set to unleash a pathogen on all of humanity; rather he was fighting to help people survive it.

Another scientist that came to Fauci's defense was Professor Peter Hotez (again, with limited time and energy,) I was not prepared to tackle the vaccine aspect, but note that Hotez is a firm advocate of the science supporting the fact that the vaccine saved lives--oh, by the way, Mr. Mango took credit for "warp speed," but I'm guessing he'll get amnesia on that topic around the election.

Hotez made the point that it seems insane to demonize and force out of the segment of medicine that's designed to help and protect you. Fauci has been unable to fully enjoy retirement as he, his wife, and daughters are subject to death threats--from a guy trying to help. I'll end with an article he (and many others) re-posted from Nature, "Harassment of scientists is surging — institutions aren’t sure how to help." Hotez threats literally showed up on his doorstep--no doubt fueled by the orange prophet's lunancy.

Seriously, what are we doing here when we push experts out of trying to help us.

Not a villain, but "Saint Fauci."

Footnote: the partially completed illustration in a shelved project of mine is none other than Greene and Boebert who time-travelled in a flux-capacitor DeLoreon to the onset of polio to see science was evolving when it hit the earth just as the coronavirus did.

* Three points from my wedding video, don't mask shame, it was the best day of my life, don't piss on that. Second was (in case you were judging,) there was no booze in my glass, I can't tolerate alcohol. and lastly, there was no break dancing but there was a short "shuffle" dance with my limited energy--I was not going to disappoint the bride.

Long Covid, Turbo Cancer, and Fast Car

2024-02-09T08:00:00.000-08:00

I can't remember (insert Long Covid cognition joke) who said it that "nothing makes you appreciate living than nearly dying"--or maybe I was the one that said it back in 2014 when I crashed in a triathlon and nearly died on a Saturday night in the ICU of Memorial Hospital in Colorado Springs.

I had nearly come to terms with my disabled Long Covid life in July of last year with my wife. We traveled to Martinos Center for Biomedical Imaging at Massachusetts General Hospital in Boston for a Long Covid brain study with Dr. Michael VanElzakker. We'd parlayed the volunteer trip (on our dime) into a luxury hotel (Liberty Hotel) stay in downtown Boston.

It was a trip down memory lane as "Mrs Seeking Boston" and I had grand memories with my five Boston Marathons. Without working or running anymore, I hadn't been back to "Beantown" since my last marathon there in 2015. Energy limited what I could do, but we certainly spoiled ourselves with the phenomenal hotel and great meals while we were there. I felt we'd got to a point where we could both enjoy what we were able to do (even if it was room service in a five-star hotel) versus what I used to be able to do.

Then came some "new symptoms" that I couldn't tell if it was the impact of Long Covid or something new. Hard to tell, but I know it was mid-summer I felt like I'd "pulled something" and had some pain in my groin area. In parallel to that, I'd experience some "plumbing" issues with my urination--inability to empty the bladder and frequent urination at night. (see "growing old for men.") Perhaps lost in the blur of everything else going on medically, I reached out last July to my primary care to set an appointment to talk about it.

As usual, this post meanders a bit more like "kernels of popcorn in the microwave," but it certainly mimicked my migration to Medicare on July 1, 2023 as it was a confusing process. As part of being approved for Social Security Disability (on top of my private insurance disability--they deduct any SSDI from what they pay; which is why they funded my lawyer) I migrated to Medicare. Perhaps a whole blog post in and of itself, but I essentially migrated from (working with) great insurance, to very expensive COBRA insurance, to even more expensive private market insurance, to Medicare.

Along with Medicare we selected a supplemental Medicare Advantage plan--again; more money but far cheaper than private insurance or COBRA. We selected an Advantage plan that worked with my neurologist and my primary care--among other reasons. Our surprise was calling July 1st this last year (or thereabouts) to talk about my (ahem) "plumbing issues." To my disdain, they politely said "oh yeah, we need to fix that website, we don't work with that insurance." Curses...

PET Scan December 2024

This started the process of seeking a new primary care doctor that was in my insurance network that could at least spell "L-o-n-g C-o-v-i-d" or knew what it was. I found one but it was months out to get an onboarding appointment. Feeling the pain (of the experience trying to navigate Medicare,) the pain in my groin, and trying to find a new doctor, I called an "audible." I went in to urgent care this last August with chest pain (again) and figured I'd have them check out the plumbing as well.

The EKG was normal and I got yet another hypothesis for the chest pain. The physician assistant then had me "drop the drawers," turn my head and cough. The PA felt what he thought was a hernia and put in a referral to a surgeon. Three weeks later; the surgeon performed a sonagram to look at the area in question. I walked out without a Spiderman sticker and the test results were negative for a hernia. The doctor suggests a physical therapy consult.

Another month passes and I finally have my new primary care appointment in September; 3-4 months after I notice this new pain. I really liked the new doc and he seemed quite literate on Long Covid. He was also in the same hospital network as my neurologist which is UC Health. Dr Sanchez did a full "onboarding" with loads of questions, bloodwork, and among the blood tests he runs was a PSA (Prostate Specific Antigen) test which screens (not definitively) for prostate cancer.

Normal PSA levels are 1-4 and mine came back later that afternoon as 77. This prompted a cascade of appointments and tests with a Urology Oncologist who ordered an MRI and biopsy. I liked the urologist and he initially allayed my fears of the worst. At this point, I'd comment that the good news with medical "portals" is you get news right away; the bad news is you get news right away. A handful of scary words can be "triggering" read off a portal without the expertise immediately of the doctor who ordered them.

The MRI noted a "Gleason Score" of eight which (8-10) is the in the highest category of prostate cancer considered "high risk." My oncologist "talked me off the ledge" but indicated it was (with MRI and PSA in hand) likely stage III cancer that had metastasized but he needed the biopsy (and subsequent full-body PET scan) to definitively label the "level" of cancer and its' spread.

Once we had the biopsy completed (and again panic as my wife and I read it from the portal before the consult appointment) we met again with the doctor. His usual disarming conversational tone and charm (I'd established joking as my defense mechanism) had changed to a more somber conversation in his office just prior to Thanksgiving. I can't remember the exact words, but it was essentially "it's not good news." I had stage IV cancer that had metastasized to the bone. He would schedule that full body PET scan two days later.

Yet another MRI; this time focused on the groin area

My mortality panic ensued when I asked him "how much time do I have left" and quickly followed with; "how are we going to treat it, are we going to do chemo?" His answer was "are you sure you want to do that; wouldn't you rather live your life?" We interpreted that as it was too late for treatment. The doctor held my hand as I held my wife's. We cried in the office, we cried at the deli on Colfax Avenue in Denver on the way home.

"This can't be right," I'd continue to mutter to myself. I'd already "come to grips" with my life. I wouldn't likely see my 70's or 80's like both my parents did due to the decline of my Long Covid body. While we can't definitively connect my cancer with Long Covid, my urology oncologist said that my "broken" immune system likely set me up for not being able to "fend off" this cancer. Fortune Magazine said as much in their recent article, "

My urologist referred me to "the best" medical oncologist in their network, but that appointment seemed months away but set for January 4th. My aunt who's been my "favorite aunt" (no disrespect to my other favorite aunt Joan on the East Coast) was in town. I texted my sister that I needed them to come over to share the results. Aunt Marge (who was still grieving the loss of her sister and my Mom last year) showed up with my sister Kim, (her husband Marc,) and my brother Todd.

We sat on the sofa in front of the fireplace. I couldn't make eye contact as I didn't want to hurt my aunt and family. I stared at the floor and said, my doctor got my (biopsy) results back and it's "not good." I collapsed in tears and my wife shared the rest of the details. I had to then let my daughter know. For some reason that was the conversation I feared the most.

I'd gone to a family friend's wedding last summer and cried as I watched one of my best friends of nearly 40 years give the "father of the bride" speech and dance with his beautiful daughter Kaila. I cried as I wasn't sure I'd have this moment with my daughter. A wedding and grandkids seemed out of reach in the time I thought I had left. I was amazed with the maturity and optimism my daughter Nikki displayed when I told her. It gave me some strength.

As I pondered my life, I feel I've accomplished much with my marriage and raising three kids. I've traveled the world as far as the Taj Mahal in India and the Great Pyramids in Egypt, but I had so much more life to live in the (what I thought was) the final decades of my life.

Based on the Dr.'s consult and him discouraging treatment, I had the Christmas holiday and New Years to ponder my cancer and mortality. I had "new pain" coming from my bone cancer that was different than the arthritis I was able to manage for years attaining five Boston Marathons.

I took an obvious needed break from the online Long Covid community as that seemed insignificant despite the solace and solidarity I'd built through X (formerly known as Twitter.) I didn't miss it and focused on my wife, family, and living as much as I could.

This has been my longest hiatus between blog posts for my former running blog turned Long Covid recovery journey and advocacy blog, now to a fighting cancer blog. I felt like I needed to get words on paper (or typed on a laptop) to share or advocate just as I have throughout my Long Covid experience online.

Before entering the holidays and meeting with the medical oncologist, my urology oncologist said that the medical oncologist would likely start me on hormone deprivation therapy; so we started with two shots to the belly in our final (consult) appointment and another dose a month later. He described this as chemical castration. I won't delve deeper into what that meant but I'll let you Google that one on your own. Another thing stolen from me since 2020 when this all started.

Before the end of the year, I put my Long Covid clinic on pause as quite frankly, fighting cancer right now is a higher priority despite no breakthrough or change in my symptoms there--I still have (micro) blood clots, I have damaged mitochondria, endothelial damage, neuropathy, vasculitis, cognitive impairment to name a few all associated with Long Covid. For the first time, we both wept as I described my diagnosis to my RTHM (Long Covid clinic) doctor. He cared so much about getting me better, but now another leg of the marathon was ahead of me.

During a routine update to my private insurance senior case manager, I'd previously made her aware of the pending PSA tests and gave her my Stage IV cancer updated diagnosis. It seemed ironic when she (actually has been pleasant and understanding of my illness thus far) asked, "so how are you feeling otherwise?" I stifled a sarcastic laugh and explained that sofa and bed rest have increased and symptoms of Long Covid have not dissipated. I feel worse.

As I tried to maintain some level of decorum through Christmas, my wife was amazing. She knew what to say, sometimes not saying anything, or letting our emotions out. We tried to not let our mortality imaginations run wild. Despite this, this whole experience messed with my psyche during the day and especially at the "witching hour" as I call it; after 8 PM and whenever I eventually fall asleep each night as I pondered what lies ahead.

We did have two very special moments that stick out in my mind as we processed the news over the holidays; watching a sunset together one night and another night having a dinner date. Those nights I did feel like I loved her like it was a "first date" all over again. I was "George Bailey" (from the 1946 film, "It's a Wonderful Life") as "the richest man in town" when measured by the love of my wife and those closest to me. Maybe it was glimpses of either acceptance or a sliver of hope.

Once the few Christmas presents under the tree simply adorned only with lights (not having the energy to hang ornaments this year) were unwrapped, my adult kids went their separate ways and the house was empty except for the twin pups, my wife and I. The house was eerily silent and I tried to fill it by watching sports and Netflix--trying to distract and occupy time waiting for January 4th. The clock and the calendar moved slow.

I spoke to an old college friend's wife. He had a terminal cancer diagnosis with little time left. He's still here eight years later. In my mind, I felt if I'd get eight years I'd consider that a "win."

Sorry for the length of the update, but it's hard to fit this type of experience into a few words.

The day came and we'd joke later that you know you're getting older when your doctors are younger than you are. as young doctor Eule walked in and diffused the conversation quickly with a brief introduction and asked me, "what do you know?" (about my cancer.)

I repeated what I knew; my PSA was 77 and jumped to 117 which prompted an MRI, biopsy, and full-body PET scan. My urology oncologist said it was stage III cancer but pending the PET scan, it would likely be stage IV. Once again with the advantage of having the portal report of the PET scan we knew it had spread to several areas of bone, but hadn't spread to organs.

I shared what I thought I'd heard from a life expectancy standpoint, but "individual results" may vary.

He was surprised and stated that I summarized it well. It was in fact stage IV, but was quick to point out "there are treatment options" met with a huge sigh of relief from my wife and me. He said that it was common for prostate cancer to "jump" to bone but not common to spread to organs. He confirmed my hope that there was no organ involvement (yet) based on the testing. While prostate cancer is treatable, bone cancer (mine at least) couldn't be eliminated but we can treat and try and curb its' growth.

Think of testosterone as the food of the killer dinosaur named "cancer(us-attackus.") Kill the food (with the hormone therapy) and starve the dinosaur. My analogy not his.

The "plan" would start with the hormone therapy (the two injections I had in November and December) going to a periodic (every three month) basis. I would also start an oral (pill) version as well. Man--I guess they really want to starve "Cancerus-attackus." Seems odd to say this or type this but I was happy to hear him say we would then go with a "blast" (my understanding and word, not his) of chemotherapy. I never thought I'd be happy to hear, let's sign you up for chemo, but this meant we were going to fight. I still have fight in me.

More blood tests (one liver panel) and loads of details from the oncology pharmacist that educated us on the months and treatment ahead. It seems that cancer treatment has "advanced" quite a bit even in the last 3-5 years. There were also strategies to try and mitigate the side effects of chemotherapy including nausea. Another glimpse of hope is that Dr. Eule is also a professor at UC Health (Anschutz') associated University of Colorado.

Dad and daughter

He (professor) said that position of his could open me up to clinical trials, but none that immediately came to mind but also would have to begin with traditional treatment methods. In parallel, a good friend (and cousin) provided an introduction to UCLA's Prostate Cancer clinical trials--I got a similar response in that they'd want me to pursue traditional treatment before clinical trial consideration.

So this along with yet another researcher here locally that's done some research around mitochondria, Long Covid and cancer I've also been in touch with. Just as I have with my Long Covid, I'm approaching from a standpoint of a realistic understanding of what I have yet not conceding just yet. The most common advise I have got thus far is one's mental attitude means a lot in terms of length of time left and surviving cancer.

I've tried to "ward off" that "witching hour" as I've called it and to grab even the littlest thing I can in a day. With that, my wife and I tuned into the Grammy's this last Sunday night and was emotionally moved to tears by the Luke Combs and Tracy Chapman performance of "Fast Car." I can't explain why I was so emotional other than to see the beauty and grace that is the grand dame, Tracy Chapman; her singing seemed magically perfect.

I copied the link of her performance and sent it to my daughter the next day. She had been "nomading" this last year with her boyfriend while working from Oregon to Canada, Arizona, and Texas before returning home for the holidays. With the future uncertain and the unspoken word of wanting to be "around dad," they signed an 18 month lease to be in Denver. I didn't ask her to do this but like my wife, she's been a beacon of hope and energy of late with the news. Not that my two boys (young men) haven't either but something about the dad and daughter relationship.

After I'd sent her the video clip, I went to read the lyrics for the first time and became emotional again.

See, my old man’s got a problem...

He says his body’s too old for working

His body’s too young to look like his...

I said somebody’s got to take care of him.*

So anyway, thanks if you made to the end of this meandering post, and thank you to those who I may only know from online interaction and most importantly, thanks to Mrs. Seeking Boston, my kids, Aunt Marge, Ruth, and siblings that have been there for me on the latest leg of my toughest marathon yet.

Footnote: I will start the second oral method of hormone deprivation treatment this week. A month from that (early March) I will start chemo. Shorter updates you can find on my Twitter, or Instagram energy pending.

* I realize that "Fast Car" is based on a drunk, a wife who left a husband, and poverty. At this stage of my life, none of those apply. (smiling emoticon)

It's a Mad, Mad, Mad, Mad, Long Covid World

2023-09-28T14:17:00.133-07:00

I don't quite get it. I've given up on "can't we all get along," but don't quite understand how the Long Covid community has veered off onto such an ugly course. I get it. Of all people, I get it. For me, my "48-hour flu" that started back in January of 2020 is now at 32,459 hours. Not that I'm counting. Of course I may already be in trouble because I used the word "flu" when describing my world. Semantics is part of what got us into this mess.

My theory on "the why" before I get into "the what" is, people are at their wits end--there's another more graphic figure of speech I'd use but highly inappropriate given the high rate of suicide among those with Long Covid. Before you take that line out of context, we are depressed because we are sick and not the other way around as Natalie Shure and other gaslighting journalists would indicate with terms like "FND" or functional neurological disorder.

Before you become alarmed with my use of the "S" word, I am managing my mental health and in the best (poor choice of words) place I've been in terms of accepting my situation.

This is all a long way of saying, people are realizing they quite possibly will be disabled the rest of their lives with many getting worse. This is a tough pill to swallow and (and I've swallowed a lot of them over my Long Covid journey) is that people are on the brink and starting to lash out and act a bit out of character.

My run blog turned Long Covid recovery blog and related social (TikTok, Xwitter, Insta, YouTube) over time has found some solace and solidary in the Long Covid Community. I have made many good online friends as a result, but it is now becoming more and more divided and frayed. The "community" has been a source of group therapy in a sense (much cheaper as I often point out,) and for me, advocacy.

Taking it a step further, I have my "sophomoric" humor (at least I try to be funny and provide some levity in a very dire situation) with my "Man in the Robe Productions" Long Covid digital shorts which often take jabs at what I felt was the common enemy; Vinay Prasad (aka "The Angry Conspiracy Bear,") Steve (aka Harry Balsach) Kirsch in one of my favorites, "Long Covid Jeopardy" and the like.

Along the way there has been at least one high profile "grifter" that 90% of the community reviled as she seemed more into flying first class and shining a light on herself versus her stated mission to help the community. Her organization has since been dissolved.

There are a few "wolves in sheep's clothing" that enter Twitter (X) spaces then "sucker punch" with a tweet or quick jab in a space. Along the way, I have blocked my share but only two people with Long Covid that I can think of. One (featured in both Long Covid Jeopardy and in my latest Long Covid Mean Tweets) who put out a manifesto of everyone he despised in the Long Covid Community with a few personal attacks including calling me a "creepy looking dude." Fair point.

The second "block" is a frequent lounge participant and had previously told me to "fuck off" in so many words, but more recently told me to "enjoy your brain bleeds" as I'd started (somewhat controversial or certainly still in research mode) triple therapy for blood clots. Shocking to hear this from someone with Long Covid to wish this upon me.

I should point out AGAIN that I do not give out medical advise as I am a former art major turned to business major; not a neurologist, epidemiologist, and any doctor for that matter. I am OKAY with the community stating opinions about studies or treatment in general but I think that doling out personal medical opinions especially without asking is simply not cool. Most of these people and opinions are NOT in the medical profession so kindly keep your doctor conversations between you and your doctor.

Short of being defensive, I have tried practically everything; Ketotifen, anti-virals, tons of expensive vitamins I've peed down the toilet, prolonged Paxlovid, and low-dose Naltrexone to name a few. I have been open about my journey and felt this might be helpful (again short of giving out or endorsing any medical treatments) to others.

If anything I am getting worse, not better, so if I want to try triple therapy (three different blood thinners) and assume that risk, then that's my choice. I am doing it under a doctor's supervision at RTHM (aforementioned "blocked" friend also railed on them as grifters--which I take exception to.) I am frequently testing for any possible side effects, but then again, that's my business but I guess shame on me for sharing my experiences on twitter. BTW--I have tested for and my doctors have found clotting so it's my business to treat that.

My "microclots" test results

Same person has attacked the integrity of distinguished Professor Resia Pretorius and Professor Doug Kell--both prominent names in the Long Covid community doing research around microclots.

DISCLAIMER: I am not saying anyone should consider "triple therapy" without consulting with their doctor. I don't view microclots as a panacea for treatment of Long Covid, BUT, if I can't breathe and my lung and heart images are fine then what else could explain dyspnea?

The second area of "divide" among the community I've seen is "lashing out" at doctors, professors, and the research community working on finding solutions to the puzzle that's Long Covid. I recently came out with a DC Comic's inspired Villains and Super Heroes of Long Covid. The first list was universally praised with some mentioned above (like "Angry Bear" Joe Rogan, and Kevin Bass.) The later created controversary as many with Long Covid attacked my list as being "grifters."

Some of the Villains on my list (like current CDC Director Mandy Cohen) you might find "odd" given their stated position, but as I shared in a lounge yesterday, it's become harder and harder to discern between the "good guys" and the "bad guys" much like Star Wars where the stormtroopers working for Darth Vadar actually wear white. In the case of Mandy "the minimizer" she seems to lack the words "Long Covid" in her vocabulary and still thinks washing hands is protection against a potentially crippling virus.

I've seen (one of the above, or actually both my "blocked" Long Covidians) attack some of these "heroes" personally online. Names like Kell and Resia Pretorius who I think highly of were virtually "dissed" as being of the same ilk as the woman "banished from Long Covid Island" for posting her expensive rugs. I get it, it's America (for some of us) and everyone has a right to an opinion, but it seems that most all of the experts draw distain sometimes simply for word choice in a tweet.

Help me understand or "show me the receipts" where they are somehow diabolical or have some nefarious intent other than to solve this mystery of Long Covid and HELP us. I stand by both lists of Villains and Super Heroes.

My list of "Heroes" is not "gospel" and everyone has a right to an opinion, but it does say something that most everyone agreed with the villain list but many of the heroes were called into question. Everyone is entitled to their point of view but I think we've veered off course if we're attacking the very people trying to help us.

The latest (very much related) "divide" in the community is the biomarker paper (Nature Med) authored in part by (two of my Super Heroes,) Prof. Akiko Iwasaki and David Putrino of Putrino Labs; "Distinguishing Features of Long Covid Identified Through Immune Profiling."

The negative backlash was twofold; 1) people were saying, "I've been saying this since 2020!" and 2) it's a bit like the RECOVER scorecard that was universally panned. There are patients who don't quite fit some of the paper's findings; notably, low cortisol and EBV (Epstein Barr Virus) markers. Short of contradicting myself and stating medical opinion from a former art major, the one thing I've found is that there are many commonalities among people suffering from Long Covid but there are also many differences.

Some adversaries of the Long Covid Community in prominent roles not exactly our allies

Ironically, as I went to link to Putrino's Xwitter profile, I see that he's posted a response yesterday (HERE,) to the negative response he's encountered as a result of the paper and all the negative press it's received.

Once again, I'm scratching my head. Yes, it's frustrating as hell to still be at the "identification phase" of Long Covid versus the treatment and solution phase. I had three different people reach out to me and tell me about the article including my friend Tom Costello, NBC News Correspondent (who's covered my story.) The way I look at it is that mainstream media picked up the story and it had great traction shining a much-needed light on a colossal issue. Yes, seems there are areas to pick apart--like the total population affected by Long Covid, but it seems we're arming ourselves to quickly attack anyone trying to help.

Perhaps NOT ironic, the "Angry Bear" (Vinay Prasad,) Beth Hoeg and perplexing UCSF published the steaming pile of sewage this week titled, "Statistical and Numerical Errors Made by the US Centers for Disease Control and Prevention During the COVID-19 Pandemic." The article gaslights, and cherry-picks snips of data with more than a tinge of "dirty" money influence--specifically conservative PAC money (Arnold Ventures.) I won't link to their "steaming pile of (poo emoji)" paper.

UCSF is perplexing in that they allow the Angry Bear to completely ignore his Hippocratic oath and actually mock the Long Covid disabled community yet have a study that's showing some promise. In other words, even more confusing that there are white hats amongst the black hats.

Part of my point is that the "Angry Bear" and other gaslighting and minimizing "press" gets far more clicks and traction than a well-researched fact-based medical journal and the accompanied mainstream coverage so shedding MORE light on Long Covid is a "good thing."

As I was flying home from Boston after a Long Covid brain study, I got into a "healthy" debate with a fellow LC sufferer over a doctor's use of the word of "post viral." We went back and forth a bit in a healthy manner and I reached out to her via DM to try and understand her perspective which was the HIV community would be in an uproar over the use of the word "post viral."

My point to her was that dating back to 2020 at National Jewish Health and 2021 at Mayo Clinic, doctors would describe the multi-system chaos in my body as a post-viral illness. I didn't take exception to that language then or now. The metaphorically speaking (once in a 100 year "super" virus) Covid-19 tornado "left town" but the aftermath has created several severe ongoing issues. We had a civil exchange and hopefully both understood our respective points. This is how such conversations should go. In the end, we may agree to disagree but we are both suffering.

Another case where semantics gets us in trouble.

The last "leg of the stool" is the feverish divide between the Long Covid community and the ME/CFS community. This one I get to a degree as many with ME/CFS have suffered for decades and along comes Long Covid and it is a headline story. Where the divide begins is (in part) for the ME/CFS community wanting to rename or rebrand under one name.

In my opinion (not that this entire piece hasn't been) is that there can be overlap, but there are also unique differences so I don't care for the single "brand name." I also have found some commonality and solidarity with those with ME/CFS and have been on more than a few legislative calls trying to raise awareness for related legislature trying to help the disabled community. We can disagree on the brand, but we don't need a "war" with the ME/CFS community.

The "blocking" of fellow "Long Covidians" has increased in frequency and perplexity as has the number of "self-imposed" breaks from the toxicity of Twitter--myself included.

I'll use one last confusing example that I shared in Dave's lounge yesterday and that is (on my Hero list) Dr. Wes Ely. I became a "fan of his when I saw one of his TikTok videos that I've shared before (and I'll paraphrase) as he described the damage that our brains are having, we don't have answers yet, but people with Long Covid need to be heard and shown some compassion. Yes, I've seen him get roasted for "word choice" and he seems to have fallen into the questionable hero status. Broken record--I don't understand this.

To try and wrap this up, I get it. Whether you have been sick for approaching four years or one year, we are sick and tired of being sick and tired, but we are stronger as one than we are arguing amongst ourselves for a common goal and that's to find answers from people trying to help, and treatment to get some sliver of our lives back.

Thanks for listening. I'd welcome your comments here or on Twitter.

Slate Long Covid Hate

2023-08-28T11:17:00.003-07:00

What is it with Slate and their minimization and downright dismissal of Long Covid? If I didn't know any better, there has to be a similar "yarn on the corkboard" connection to PAC money or the likes of Jeffrey Tucker's Brownstone institute. The later explains the money-fueled bias of Vinay Prasad (aka the "Angry Conspiracy Bear.")

It certainly can't be that they (Slate) has it right and the lion's share of the medical and research community has it wrong. At this point, there's a pattern of gaslighting at Slate; first with the "hack" aviation (using the term lightly) journalist Jeff (not) Wise. I say hack as he is known for writing about aviation and more famously (or infamously) featured in the Netflix documentary on the missing Malaysia flight 370 "MH370: The Plane That Disappeared."

Several theories emerged and by the end of the documentary, other (seemingly more reputable experts) dismissed Jeff's stories as tin-foil induced drama which made him the perfect candidate to be an expert author on epidemiology (sarcasm) in the the article "Long Covid Comes Into the Light." Don't waste your time as there's lots of yarn and tinfoil in this gaslighting of Long Covid.

I guess gaslighting pays as it seems articles like the above and the latest are better "clickbait" thus advertising dollars than the truth. I actually had a "blog in a twitter thread" breakdown of this garbage (HERE.) but suffice it to say, there's a lot of conclusions he draws (as a non-expert) such as "chronic comorbidities (implies ya have to be sick to get sick) might be experiencing the onset of new symptoms...others might be affected by the sorts of mood disorders and psychiatric symptoms you'd expect to find in a population undergoing the stress of a global pandemic.

Such gaslighting joined Jeff Wise along with other notorious minimizers Vinay Prasad and Steve Kirsch in my Long Covid Jeopardy. Yes, when you've lost your ability to run and your career becoming disabled from Long Covid, I'm more of an expert than Jeff and yes, I use humor as a coping mechanism, but it's far from funny (but I think Long Covid Jeopardy is.)

Back to pay for clicks, Vinay's YouTube (I won't link to it) tinfoil segments garner 100K views while mine had a paltry 382 clicks; but 40K impressions on Twitter. The "angry bear" makes even more money on his paid substack which is a common grifter platform for him and Harry Balsach (you'd have to watch Jeopardy to understand that one.)

Anyway, as usual, I've veered off the path. Slate Hate. Back to that.

Just as the color returned to my face after being red-faced angry over the Wise piece, last week, Slate returned to "double down" with a piece surprisingly written by epidemiologist Gideon Meyerowitz-Katz who is an epidemiologist at the University of Wollongong. More like University of "load my bong."

I repeated my "blog in a Twitter thread" when my online friend (Mary Jo) from "The ReSisters" podcast dropped me a DM over the weekend asking if I'd read or had an opinion on the latest piece I hadn't seen yet from Slate. (BTW; My Podcast with them on YouTube HERE.) The article is based on a Nature Med article based on a Long Covid study that included work and expert opinion from Eric Topol and Ziyad Al-Aly. Shockingly, household names among the Long Covid community were not quoted or consulted from the hack piece by Slate. More yarn.

You'd be far better off reading the Nature Med link or a more credible news organization, like the Washington Post article that actually interviewed both Topol and Al-Aly.

You couldn't be further apart than the actually headlines. Slate's "What the Actual Evidence Actually Says About Long Covid"versus WaPo's "Many Long Covid Symptoms Linger Even After Two Years: New Study Shows" written by Amy Goldstein.

Did they read the same study?

Meyerowitz-Katz (who dropped me from Twitter faster than the spread of Covid at a Taylor Swift concert) after my weekend thread) veers off on several inaccurate gaslighting conclusions such as “There are still tens of thousands of people likely disabled due to their coronavirus infections.”

Ten's of thousands? You mean in Los Angeles county alone don't you? Sorry, sarcasm, but that number is way off. This is gaslighting and minimizing. Most estimates indicate 20+% of those that get Covid have long-term damage or Long Covid. This is MILLIONS of people. Not tens of thousands. "Non-hospitalized cohorts still displayed greater odds after two years of medical problems including organ systems."

Yes, the study was based on a VA study so Meyerowitz-Katz draws confidence for those in the Long Covid community as this is the (drum roll,) comorbidities playbook--only those old or with pre-existing conditions are more susceptible to getting Long Covid ignoring the fact that there are kids getting sick and young adults with Long Covid.

Which would explain why I was in the best shape of my life as a runner and triathlete and successful in the business world and now on Social Security Disability.

He uses the word "immunity" from the playbook as well which gives the internet a false sense of security that "the really bad stuff" can't "happen to me" because "I've had it before or must have had it by now."

Gideon writes, "I find the evidence quite reassuring." I get it. People are tired of talking about Covid, and want to move on to normalcy. Politics has killed Covid and Long Covid between the badminton played by Trump and now Biden to the point where Mandy "the minimizer" Cohen, CDC Director talks more about the common cold than Covid and doesn't seem to have Long Covid in her vocabulary.

Articles like this don't help the needed reform and research investments needed for the millions--not tens of thousands of people suffering from Long Covid. Shame on you Slate!

The rest of my thread on twitter (HERE.)

The Dirty Dozen Symptoms of Long Covid

2023-05-31T08:34:00.002-07:00

Good Lord. Where do I start?

There are two twitter storms within the Long Covid community stirring up quite a bit of dust; one being tensions boiling over with division starting to happen to what was a cohesive community and the second is the "bombshell" dropped by NIH defining Long Covid with twelve symptoms.

The later is one of the outcomes of the (not)RECOVER(ed) $1B initiative that has had "little to show for it."

The former, I don't understand (and perhaps a future post) but the "dirty dozen" is a hot topic and I'm likely already in trouble by stating that NIH and JAMA narrowed down and simplified to a mere dozen symptoms as being inaccurate.

One side of that coin is there WAS a patient advocate as part of the study which we'd hope would reflect the community in terms of definitions and what those definitions would be used for. That's the start of the problem. Lisa McCorkell was that advocate and is one of the co-founders of Patient Led Research. The Patient-Led Research Collaborative is a group of Long COVID patients who are also researchers born out of the Body Politic.

Before I get in trouble for the second time in the third paragraph, let me state I don't know Lisa but can only imagine the amount of (thankless) work that participation would entail. Me personally, I wouldn't have enough "spoons" to dedicate to such an effort--its' far easier for me to make Jr. High level humor videos on my own time on Long Covid.

In no way am I diminishing Lisa's efforts; but quite the opposite of pointing out there was at least some patient input (aside from the 9000+ study participants) so bravo to her.

Why am I in trouble for stating "(they) narrowed down and simplified to a mere dozen symptoms?" If you dive into the paper and the countless threads on twitter, you'll find acknowledgement that there are over 200 symptoms of Long Covid (as Lisa points out;) yet they came up with twelve to determine a PASC (Post-acute sequalae Covid--clinical term for "Long Covid") score. The crazy part was the scoring system outlined in the JAMA paper states, "The optimal PASC score threshold used was 12 or greater." (see Figure 2.)

It's kind of like the SAT in high school, but in this case (at least the larger interpretation is) if you score below twelve, you don't get into the college you wanted but in this case, congrats, you DON'T have Long Covid. Don't shoot the messenger or in this case the brain-fogged blogger, that's how the broad universe (and media) is interpreting this paper. Each symptom has a weighted point system with loss of taste and smell being the highest with eight points.

As an aside, I NEVER lost my sense of taste and smell; therefore no eight points for me. My "Spidey sense" and non-medical research opinion (based on my three years of Long Covid and interacting with hundreds of people with Long Covid) is that loss of taste and smell is a strong indicator of having Covid, but NOT EVERYONE loses these senses during onset of infection.

The JAMA paper shows a dendrogram indicating...I'm not entirely sure what it's indicating because I don't know what a dendrogram is; but shows of the 9764 participants scores a 100 in the n = 477 column. I have no idea what I just typed, but what I do know is that know very few who still haven't regained those senses. I'd say that universally the Long Covid community is baffled that it has such a high ranking vs (as an example) "it feels like the Alien from the movie of the same name is ready to burst out of my chest most nights."

I'm probably making the case for NOT sharing these type of papers with non-professionals, but I (like many of my Long Covid friends) seek guidance as we're trying to regain our lives and are hungry for answers.

As I state, I'm not qualified as a medical professional and have cognitive issues so I could be misinterpreting this wrong, but I'm not a alone as interpreting it (above) thus far. Where it starts to get worse is then how it's being reported in mainstream media. The CBS Headline was "Long COVID is defined by these 12 symptoms, new study finds." Not twelve of 200, not over 200, but these twelve define Long Covid.

In the above mentioned CBS Article, Professor Jodie Guest from Emory Epidemiology is interviewed (in the accompanied video) and states that "tiredness and fatigue" is the number one symptom which I believe DOES resonate with the community...soooo, again, why is taste/smell ranked so high??? (Good interview with Professor Guest and a good follow, but her interview didn't seem to match CBS' interpretation or headline.)

Some of the "ugly" within the Long Covid Community jumping all
over Hannah Davis

As a hack (former high school) journalist, I have deep respect for credible journalists like Tom Costello from NBC News that's covered my story and more recently Morgan Stephens (published in CNN.) I have not held back for others like Jeff (not) Wise and Natalie (not so) Shure who either connect dots that aren't there, gaslight those with Long Covid or are simply not qualified (as I state I am) to interpret complex medical topics and papers.

Back to the "Dirty Dozen" I've had numerous friends whose score is below twelve and are furious and feeling dismissed. I scored an eighteen, but that doesn't mean "Jack diddly Dick." Does that make me "more sick" than others? No.

That's where this rat's nest really starts to unravel. Could Doctors, Hospitals, Long Covid Clinics, insurance companies, and Social Security Disability use this ranking system to determine whether or not you have Long Covid? I don't know, but it's conceivable when the community is "marked" with gaslighting, dismissal of our condition, and lacking ubiquitous definitive tests to identify PASC thus far.

Having said all that, I acknowledge that this is a complex topic and difficult to boil down over 9000 participants into a pretty little box of a dozen symptoms, but I feel they "missed the mark." I often answer the question of what are your symptoms and what is your day like to the analogy of a kaleidoscope (see Figure 2.) It's a wide blend of symptoms (prisms) that change over the course of a day, a month and in my case, over three years.

I hit many of the quadrants of the dendogram with neuropathy that still sends me to the ice tub most nights, PEM (post exertion malaise,) fatigue, chest pain and spasms, advancing cognitive issues, extreme dyspnea, vasculitis, preload insufficiency of the heart, broken immune system, and rife with inflammation (and I'm sure I'm missing a few of the "garden variety" Long Covid symptoms.)

Not on the list is cranial instability--common and now part of my new set of symptoms--I now have a diagnosis of cranial stenosis (see RTHM YouTube video on Cranial Instability.) Double vision (only once for me,) weird rashes (what looks like according to my Google MD wife as Shingles) in the last week, swimming fingers (pruny fingers seen when spending time in the water,) losing fingernail "moons" and now tinnitus are relatively new for me but alas none are on the list.

But hey, I'm not a ten, I'm an eighteen so put that in your dendrogram.

UPDATE: The Long Covid Action Project and Action Network has a template to send a letter to your (U.S.) political representatives asking to retract the paper (HERE.)

The Art of Long Covid

2023-04-03T12:28:00.002-07:00

UPDATED: April 2023. Continuing to add more recent work at the top. Chronological art further below as noted.

Mango Mussolini pretended Covid didn't exist. Joe Biden is now pretending it's over. Parody video based on George Romero's classic film, "Night (Day) of the Living Dead."

One of my "pet peeve" terms around Long Covid, is brain fog. Medical journals are starting to label it in a more serious context. I call it brain damage.

I use "parody" as a way of expression and parody of sorts. The third in my series of "Long Covid Mean Tweets" showing a spotlight on those gaslighting and railing on those disabled with Long Covid or trying to protect themselves from Covid.

As President Biden has declared the pandemic is "over," we're seeing more and more commercials minimize the effects of Covid and Long Covid. There's the television ad with Pink, and Michael Phelps, but the worst idea an intern ever turned into garbage was the California Department of Public Health sing-a-long (seriously? people are dying and getting disabled and we're singing about it???) video. My alternate video of what they really should have produced below.

My second Long Covid "mean tweets video based on Jimmy Kimmel's celebrity mean tweets--in this case, people gaslighting and being downright nasty towards those suffering from Long Covid.

A common "victim" of my parody videos is the worst gaslighting (not really) medical professional, Vinay Prasad. I depicted Vinay and Natalie Shure who wrote the epic gaslighting article "We Might Have it All Wrong" in The New Republic rag. She failed to interview any notable names in the Long Covid medical community and suggested it was FND (functional neurological disorder.) She might want to check herself for disorders.

Joshua Pribanic and the Public Herald put together a masterful rebuttal with over 200 professionals tearing apart her trash piece. A great read HERE.

Natalie and Vinay are often on the receiving end of my ire covered in THIS POST including the illustration below and one of my biggest pride and joy pieces, "Vinay the Angry Conspiracy Bear" video.

And the original Long Covid Mean Tweets.

As 2022 came to an end, I put out a holiday video; a spoof based on the movie, Love Actually. Aptly named, "Long Covid Actually" putting my green screen at home to work.

When Long Covid comes to town, bad things happen (carnival background stock photo.)

As fears of Elon Musk completely melting down the servers at Twitter, I've got an escape strategy below to my Mastodon Account.

Prior to my Star Wars escape Pod, one of my #LongCovid peeps on Twitter suggested we lobby for the great Dolly Parton to share some of the $100M Jeff Bezos is purportedly giving her for charity. C'mon Dolly, can you help us out? #DollyHelpLongCovid

I must be feeling a '60s vibe of late as shown in my concert poster-style image below promoting "Long Covid Solidarity!"

ORIGINAL POST (OCT. '22) I'd engaged in conversation recently with someone on Twitter and she asked if I did the accompanied drawing in a tweet. My normal retort is that the production department consults with the legal department then I approve here at Seeking Boston Marathon. Without sarcasm, I'm a "one-man-band" with Long Covid that writes and illustrates my journey. Part therapy, part advocacy. With that, much has happened over my 1001 day experience with Long Covid so I thought I'd share that journey through the art I've created over those 33 months.

My first drawing showed the "Elephant in the Room" as in early 2020 I had issues with breathing (as I was still trying to train for a half marathon in March '20) and doctors had no answers. News was just erupting over the deadly Covid-19 pandemic.

I recall watching the stories in January 2020 from my hotel room in Cape Town, South Africa where I'd coughed all night and woke up with sheets soaked from the chills from the night before. My Long Covid journey had just begun, but I had no idea what I had or what I was getting into.

As the pandemic unfolded and everyone quarantined into their homes, there was a a nightly "howling" that hit the country at 8PM. I painted a "triptych" Beatles-themed painting in the front window of our home and I blasted "All you Need is Love" through my Sonos speakers into the neighborhood. A subtle jab at the early mocking of the administration shows a Covid squid and a certain POTUS' name on the whale--both attacking the Yellow Submarine.

As part of the quarantine life, also in 2020 I was sick but unsure of the nature of my illness as I started the first few of what would be close to 200 doctor appointments. Before my 100 day fever set in, I created a driveway mural as Denver's annual Larimer Square chalk art festival was cancelled but they encouraged people to create at home. I was sick but still uncertain what it was. I could not run at this point so perhaps it was a stubborn rebellion to create outdoors. I created a London street scene from our trip there in 2019.

As my conditions became worse and running abruptly ended in March 2020, I took to my Wacom tablet and redirected my energy into a digital painting of my Grandparents (Lela and Lyle) and Aunt and Uncle. Many thought this was merely applying a "paint filter" to a photograph. I created using 9+ pixel "wet brushes" with Photoshop to digitally recreate "Happy Hour on the Lanai." I presented to my mom who's since passed (HERE) on Mother's Day 2020.

As you can imagine, the above took quite some time (approximately 80 hours) and have since not been able to take on a project of this magnitude. As I continued to write on these virtual pages, what was later diagnosed as small fiber polyneuropathy started on top of the shortness of breath that again abruptly ended my running life. "My Long Haul Nightmare" was featured on NBC Nightly News along with my story below. Aside from the "monster" itself, you can seek the capillary tentacles wrapping around my legs showing the madness that hasn't left my lower extremities and now numbs fingers and doctors speculate could be causing the nightly chest spasms.

Also shown above, my favorite Hoka run shoes and Pro Compression socks are set aside. The March '20 race with Liam was cancelled and I showed how much I missed running and Liam in the next gif illustration below. I no longer wear Pro Compression in races or to recover from them, but always have a pair in my nightstand for the more severe nights of neuropathy that prevents sleep.

The above illustration also showed the self-isolation that we were still all subjected to. The next two illustrations showed how we were all practicing (or at least should have) "social distancing." Seems crazy to think back to restaurants closing and delivering food and reopened with outdoor dining and pod tents to try and bring back normalcy.

Despite the "gaslighting" I got from a recent Dr. at a renowned hospital who wrote in my clinical summary that "Ty fancies himself as runner," (F-you by the way,) I was still trying to reach and relate to running with the body odor social distancing drawing and the "Runner's Social Distancing Bingo" post below including such gems as "Run Without a Snot Rocket."

As 2020 started to come to a close and the 100 day fever ended, I depicted the "fire" inside my body that included the chest burning that has never gone away in the dark image below.

My last illustration from 2020 showed the metaphor of Covid leaving town but leaving a swath of destruction behind being Long Covid. As the tornado swirled lifting cattle, cars and toilets into the air, once again someone's red tie was twisting around a tree as I sat in agony in my chair.

As we left 2020, my medical journey continued with National Jewish Health in Denver who eliminated earlier notions of asthma and all heart and lung (pre-2020) issues. Dr. Goldstein referred me to Mayo Clinic in Rochester, MN. Dr. Greg Vanichkachorn (Mayo's lead "Long Covid" doctor) finally diagnosed me as being a Covid "long hauler "and was featured on the Today Show.

Growing up on Dr. Seuss, my next whimsical illustration was a play on words with his "And to Think That I Saw It on Mulberry Street" but of course mine was on home Dexter Street. Another subtle political tone was Dr. Birks stuck in a tree with a sign saying, "Don't drink bleach." We all remember that cringe-worthy presser.

You can see a return of my famous gray robe in the Dexter Street illustration which I've since lost. A byproduct of "brain fog" (I more accurately call brain damage.) How does somebody lose a robe? I often draw inspiration from classic film and the drawing below features Violet Beauregarde from Willy Wonka. The famous gum scene that changes flavors ending on the doomed blueberry pie symbolizes the way symptoms drift from one to another within a day or a week or in combination to create the debilitating condition of Long Covid.

At this point, I was no longer working and on (private insurance) disability and applying for Social Security Disability. We rented out our home and moved into another family home to survive the financial impact of Long Covid. I had to begin pacing myself with writing and drawing. Reading became an issue as I could no longer read and retain often re-reading pages without being able to understand. Drawing continued to be my replacement for running and (trying to) be an advocate for my fellow Long Covid friends.

Perhaps my last most ambitious project was another inspiration from the movie "Alien." I created a few drawings that was once again a metaphor for the burning in my chest that I described to many doctors as "organs cooking inside my chest." I created a YouTube video of the famous "chestburster" scene that I felt aptly described that sensation.

I say most ambitious from a standpoint of how much time I can sit at a computer and draw. I went to more simple illustrations that define my journey. Again, I drew influence from film and the movie "The Ring." Looking inside a well, you can see symptoms etched on the stone wall along with feelings such as "despair" and "lost hope" as the Long Covid black crow circles over my head.

A simpler graphic at the end of 2021 showed symptoms and feelings as depression and brain fog became "thick" with my journey. Similar to being an alcoholic, I suppose depression will always be something I have to manage, but lately Braincode Centers neurofeedback therapy has helped with both depression and the "mind racing" I describe as I try to sleep each night.

I ended 2021 with my annual "Runner's Thanksgiving Toast: Covid Edition" that helps with that awkward time when everyone is supposed to say what they're thankful for. The Long Covid edition included, "I am most thankful for Zoom with Grandpa without his pants on." Sorry, TMI.

As the complexity of my drawings waned so did the frequency of blog posts symptoms got worse and I tried to manage the anxiety, depression, and "wicked mind racing." Some of my artwork is created in Adobe Photoshop but I also like to create videos with Adobe After Effects. The video below depicts the "burning feet" and chest issues that have continued to define my journey.

A quick piece but pretty much sums up the story of all of us with Long Covid is the "So Over It" graphic. #word

As my Social Security Disability (SSD) was denied, once again a few of my posts become political and it's hard not to. In the U.S., there are upwards of 33M Americans with Long Covid and roughly 70-80% of initial SSD claims get denied. Those two don't compute. I discussed navigating Social Security disability in the illustration below (and in this POST.)

My angst with the Country turning a "blind eye" to those with Long Covid and three House Bills stalled are covered along with what I think we need to do in (THIS POST) and a few related posts and videos below.

Another economy metaphor was my recent "Titanic" ship as I've tried to "turn up the heat" with my Federal Senate and House of Representatives who again seem to have their "head in the sand" on those with Long Covid and the economic impact.

A common challenge or "tease" if you will is some days you wake up and feel that this is the day I'm going to feel better, or more aptly, "I don't feel as bad as I normally do." This false sense of hope at least for me is often hit like a shovel on the back of the head as my symptoms tend to grow or appear stronger as the day wears on as shown in this short video below.

My latest Long Covid short video was featured on Long Covid SOS--thanks to Helen Lunt Davies and everyone there for advocating for people with Long Covid. (click on the image below for the YouTube short.)

As I continued to try and find treatment working with Mayo, National Jewish Health, UC Health in Denver and more recently with a Long Covid clinic in CA and OR called RTHM, the world mourned the loss of Queen Elizabeth. As I shared above, it was the last trip I went on with the family abroad to London. I created a tribute as I've always had a high regard for the Queen and the UK. Many of my best Long Covid friends are from the UK. Only seemed fitting.

This week marked 1000 days of Long Covid as I mentioned my "onset" was in January of 2020. Way too long to be sick. I created two videos to (can't really say celebrate) the milestone.

I didn't realize how many creations I've had over this journey. I'd like to think that I find the right treatment or as with some people with Long Covid, for no particular reason, they start to emerge from the fog. Regardless, running will remain a "carrot" to chase to get back to the life I had.

I'll leave you with one last "light" creation using character animator from Adobe.

Day of the Living Dead

2023-04-02T11:06:00.002-07:00

We've jumped the shark. Despite people continuing to die from Covid-19 and more people facing permanent disability with #longcovid, Joe Biden and the good 'ole US of A is ending the public health emergency for Covid and Long Covid. As I've shared on my twitter, the previous "guy" pretended Covid didn't exist and now Joe is pretending it's over.

With that, I present my latest digital short, "Day of the Living Dead."

Considering what you can do? I'm a firm believer of advocacy and solidarity in the Long Covid community. We just finished #longcovidawarenessmonth and April brings the Solve M.E. Advocacy Week. Details HERE.

Vinay the Conspiracy Bear

2023-02-26T16:12:00.003-08:00

If you've followed my blog or twitter, you've perhaps seen one or both of my #longcovid "Mean Tweets videos."

Both have featured the "king of gaslighting" Vinay Prasad of UCSF. On Friday, I dropped the audio version of his book, "Vinay the Angry Conspiracy Bear." Some understood the #parody while others were confused wondering, "what's up with the bear reference, why a children's book, and what the heck is the reference to sauna?"

I'll do my best to explain the insanity. First off, if you take a minute to watch "mean tweets" you will see his repeated encounters with people in a sauna who are wearing a mask. Thus, his bizarre infatuation and ensuing tweets. While I agree with the sentiment, that this sounds miserable, protecting one's self in a small confined environment with a mask is within one's right especially when the deadly part of pandemic is still just that--deadly.

Why the bear? He continues to feed me (pun intended) with ridiculous tweets that gaslight and spread misinformation around protecting against the dangers of Covid and potential of that leading to Long Covid? One might ask, why would he care?

The answer to that is in part, "follow the money" famously coined in the classic movie, "All the President's Men." Hal Holbrook, playing "deep throat" in a dimly lit garage explains to journalist Bob Woodward (played by Robert Redford) that he couldn't divulge everything, but suggested Woodward, "follow the money."

I'll admit, I didn't fully understand Prasad's "over-the-top" campaign against reasonable safety measures. A few replies to my video and a few DM's dropped in my twitter enlightened me as to the (what seems like) financial motivations. He does take on a lot of "headwind" against notable names like Putrino, Resia, Kell, and Ely who all warn of the dangers of Covid and Long Covid and are seeking a solution. Alternatively, Vinay chooses to gaslight.

I honestly asked Vinay (aka Dr. Seuss, aka #saunastalker,) to join the Long Covid Lounge hosted by Dave known as "D-Bone" on twitter to tune in and understand why his messaging is so hurtful. I also wondered as a supposed Dr. sworn by the hippocratic oath of ethics to be so unethical and how could the University of California San Francisco let him run amok.

The first domino to drop was shared by Kathryn on twitter.

Taylor Nichols helps explain and connect those "dots" in his article in Medium, "COVID Contrarians and the Influence of Funding in Medicine."

He states, "My opinions have continued to state that unfortunately, politics have played a dirty hand with the management or should I say mismanagement of Covid-19 in the U.S. and around the world."

In my opinion, Trump downplayed it, mocked mask-wearing, and vilified "Saint Fauci." As a result, those that vote "red" have become anti-science, anti-mask, and anti-vax.

Not to be outdone, Biden pretended to care and now pretends the danger(s) are over.

Back to the thread connecting photos of Vinay Prasad on the corkboard. Nichols does a much better job than I could, but the short version is that (John Arnold of) The Arnold Foundation has seemingly noble intentions but includes a mission statement that includes education and election reform and "scientific research reform."

This is where Vinay's insane motivations enter the picture. Nichols write, "He has been loud and wrong for years now, which has only been amplified over the course of the COVID pandemic."

Some of Arnold Foundations efforts "lean left" which is surprising that "masking" and vaccines (which are typically "left" positions) are strongly opposed by the "sauna stalker."

Despite not being a pediatrician, Vinay gets on his soapbox dishing out advise for parents and children around masking and vaccines.

The second "domino to fall" was an article by Jonathan Howard. He wrote for Science Based Medicine (what a novel concept,) "Are Vaccine-Advocates “Idiots”, Indifferent to the Death of a Mentally Ill Woman and Her Family?" Tragically, a woman ended her life along with her two boys and the king of empathy, tweeted and incorrectly connected the dots to societal failures around Covid. What? or more appropriately, "what the fuck??"

Howard writes,

"However, the connection between this tragedy and “idiots on Twitter” isn’t clear. Is Dr. Prasad actually suggesting that if only doctors had not advocated for pediatric vaccination on Twitter, this family might still be alive? Such tragedies happened before the pandemic, and I’ve been treating patients like Ms. Cannady for 20 years. Not once has anyone said, “This patient would have been just fine, were it not for the Twitter posts of vaccine-advocates“.

Large numbers of Dr. Prasad’s Twitter audience won’t know this however. They mindlessly clicked in agreement as Dr. Prasad absurdly linked Ms. Cannady’s death to the social media habits of vaccine-advocates. When they encounter a vaccine-advocate in the future, they’ll then see a cruel soul, someone who is indifferent to the deaths of a mentally ill woman and her children. That’s what Dr. Prasad is hoping for, and it’s no surprise vaccine-advocates often deal with abuse online. Esteemed doctors at esteemed universities told them we were “idiots” after all."

Since I posted I found another tweet (and) powerful YouTube video from Dr. Susan Oliver of Australia. She shreds the "little bear" and shares yet another bizarre thread from Sauna Stalker suggesting further the measures put in plus thus far will lead to a series of events that will end democracy. His tin foil hat on full display in her epic video below.

He's so "bat shit crazy," Doctors in Australia are speaking out.

Speaking "speaking out" and speaking of of Long Covid, I'm "spent" from writing this and feel I've barely scratched the surface of his motivations and depravity. At first I thought perhaps, I'd gone too far. Now, I feel I haven't gone far enough.

Mean Tweets: Long Covid Edition

2023-02-26T13:28:00.000-08:00

UPDATED: (February 26, 2023) Added #LongCovid Mean Tweets Second edition with a return appearance from Dr. Seuss (aka #saunastalker.)

For those fans of Jimmy Kimmel and his "Mean Tweets" segments, I present to you from Seeking Boston's creative studio; "Mean Tweets: Long Covid Edition."

While this is trying to add (dare I say) humor to a very serious topic, most people with Long Covid are tired due to the fatigue component of this post-Covid illness that sends many like myself into a life of disability. We are also tired of "gaslighting" Covid-19 and Long Covid. We are tired of (so-called) medical professionals that spout out anger and misinformation. Your words have consequences.

A family member confided in me and shared their Long Covid story. Yesterday, after firing their first doctor, the second one said that "losing weight" and waiting for the one year mark (oh, and exercising) will magically make all the symptoms go away. This is why I continue to campaign for awareness and reform. Write to your government officials. Raise your voice. We need research, reform, and investment. A deeper dive into my thoughts on what needs to happen in my previous post HERE.

References:

Is it Long COVID, or Dementia, or Both? WebMD

https://www.webmd.com/lung/news/20221128/is-it-long-covid-or-dementia-or-both

More proof COVID is a multi-system cluster bomb: Insight + Powered by AMPCo:

https://insightplus.mja.com.au/2022/46/more-proof-covid-is-a-multi-system-cluster-bomb/

Professor Kell Bioanalytical Sciences Group Publications: (with Multiple contributions from Resia Pretorius)

http://dbkgroup.org/publications/

COVID-19 infections increase risk of long-term brain problems

Washington University School of Medicine in St. Louis, Kristina Sauerwein, Ziyad Al-Aly, MD, Clinical epidemiologist at Washington University

https://medicine.wustl.edu/news/covid-19-infections-increase-risk-of-long-term-brain-problems/

Dr. Wes Ely Tiktok (Long Covid Videos and Bio)

https://www.tiktok.com/@weselymd/video/7169280417600638250?is_from_webapp=1&sender_device=pc&web_id=7148137907597231658

https://medicine.vumc.org/person/e-wesley-ely-md

Man sick with COVID-19 for 14 months details struggle with brain fog and more: Meet Ty Godwin, a man who has experienced ongoing COVID-19 symptoms for over a year.

Tom Costello, NBC News Correspondent, Chrissy Callahan, Journalist Today Show

https://www.today.com/health/covid-long-hauler-ty-godwin-details-brain-fog-symptoms-more-t212614

Long COVID: The impact on language and communication: Professor Louise Cummings, Hong Kong Polytechnic University

https://www.cambridgeblog.org/2022/04/long-covid-the-impact-on-language-and-communication/

Ignore it, Get it, Regret it

2023-02-21T10:25:00.001-08:00

The California Department of Public Health put out a "propaganda video" titled "Test It, Treat It, You Can Beat It." Absolutely shocking that a State as large as California that "leans left" would put out this level of misinformation. With that, I put the creative staff to work creating our rebuttal alternative video.

Navigating the Choppy Waters of Long Covid Disability

2023-02-03T10:50:00.002-08:00

UPDATE (February 2023.) Working with a law firm, I have been notified that I have been approved for Social Security Disability. My "Notice of Award" has not arrived but I received notice from my disability attorney and confirmed with my local Social Security office. Overall, this took 15 months with one rejection and WITHOUT a hearing--I hear that's quite uncommon. Not uncommon considering the breadth of my disabilities.

Disclaimer: This is my experience and opinion; NOT professional employment or disability advise. Consult with your spouse, partner, family, and attorney before navigating these "choppy waters."

If you've read any of my blog posts, you know I draw quotes and analogies from film quite often. When talking or writing about Long Covid Disability, I'd quote Chief Brody (from Jaws, "You're gonna need a bigger boat" to navigate these waters.

It's hard to put my Long Covid life into perspective. It's not appropriate or fitting to use the word "fortunate" with the "cards in my hand," (in my case, an inside straight missing the inside card) but sometimes I do feel "more fortunate" than others when it comes to my healing journey and treatment for #LongCovid.

I feel fortunate in the sense that (while under review AGAIN,) I'm on private insurance disability. A recent article from NPR estimates that there are 4M people out of work in the United States due to Long Covid. I think that number may be "light" in that most estimates vary between 20-30% (some lower and higher,) of those that get Covid will develop into Long Covid. Even if you called it 20%, that's 18.6M people with Long Covid in the United States (based on the CDC number of 93M people who've contracted Covid in the U.S.)

What's my point? That's a ton of people either out of work or people working through illness--like I did for awhile before I went on disability.

My non-scientific study based on feedback from Twitter and Instagram (totally not scientific) is that the vast majority of those struggling with work and Long Covid didn't think to file for FMLA (Family Medical Leave Act) or short-term disability (or long) while still employed. This is NOT legal advise as free legal advise is like buying a discount parachute. My "two cents" of legal advise is to immediately file for FMLA and if warranted, file for short-term disability. FMLA (usually filed with HR or your manager) provides protection against (fundamentally) being fired because you are sick.

I've lost track of how many people I've heard from with Long Covid that tried to continue working yet management reprimanded or ultimately fired them because they couldn't perform their duties.

I dove into a twitter thread recently on the topic where someone struggling with Long Covid in the workplace said, "who wants to employ someone who may be able to work 5-10 hours a week but can't guarantee it?" To which I replied, "Add to that; can't guarantee what time I show up to work. Likely will call in sick the next day if I overdo the 1.5 hours I work that day and I'm highly prone to mistakes (due to brain fog.) What does brain fog look like? Paying bills twice or forgetting to pay them. Forgetting my kids birthdates, inability to read and retain, forgetting where I'm driving to, and sluggish responses to basic questions.

All that makes me super desirable as a potential employee. #sarcasm

Add to that, I'll be going in for IV/IG infusions every three weeks for four days a week over the next six months. The first round of treatment landed me in the Emergency Room (future post on IV/IG treatment.)

Depending on your employer's benefit package, you typically have health, dental, 401K, flex spending which we all generally sign up for. Near the bottom of that benefit list is usually a modest life insurance policy and short-term and long-term disability. AGAIN...this is not universal and you should check your current employer benefits with your Human Resources.

In my case, I initially filed for FMLA then eventually short-term then long-term disability while still employed. For the moment, I have long-term disability payments in place even though I haven't worked for my previous employer for over a year. My policy warrants that since the disability happened while employed, and I "filed" while employed then (in theory) I'd have disability benefits until retirement age.

That all sounds great but it's paying out (at least in my case) at roughly 50% of what I was making so it is quite a "haircut" in income. This explains why we rented out our home and have been living with family for most of 2022 to try and cover that income "gap" and pay for the exorbitantly expensive COBRA Insurance. COBRA is a Federally-supported program that allows you to pay "out-of-pocket" (#understatement) for continuation of health, dental and vision insurance when you're "let go" from an employer. Something most of us thought we'd never need.

Given the 170+ Dr. appointments I've had since getting sick in January '20, continuation of health insurance was not optional for our household, but it ain't cheap. We are paying nearly $1,700 a month for COBRA--combine that with a 50% reduction in income and AGAIN, you can "do the math." My healthcare is "north" of $100,000 and while insurance covers most of this; it doesn't cover all of it.

This brings us to private insurance versus Social Security Disability. Depending on income history, the former would likely pay more than the later but I can't state that as "universal" but would certainly love your comments at the end of this post on your experience. In my case, my disability insurance company is paying for a law firm to apply for Social Security Disability. Why would they do that? Math again.

Any benefits I'd potentially get from Social Security Disability would be deducted from what the insurance company would have to pay so you can see where they'd be motivated to go this route. IF approved (I've already been rejected on my initial application) they would pay in arrears to the time of disability. Don't get too excited. In my case, (if approved,) any "balloon payment for the above would be "clawed back" by the insurance company--again--this is why they're offering the legal service.

One more nuance to this whole SSDI formula is that (as I understood it,) you're also financially motivated to file as this fundamentally stops recording income history. In my case, I was in a lucrative industry as a software sales executive. Social Security continues to record year-to-year income so with drastic "drops" in income for me in the last two years would lower my eventual Social Security benefits (non-SSD) once I go on retirement Social Security.

Let's suppose in the above example, you made $60K a year for 15 years on average. If you'd dropped to zero or even half of that, your annual income average would drop over time as they average in those disability years.(In this example, suppose you didn't work two of those fifteen years, your average income would drop to $56K working the last two years at half pay and $52K without pay those last two years.) Fundamentally that drops your income average THUS lowers eventual Social Security payments.

All of the above is why I continue to push my Senator Hickenlooper for action (sorry this post is U.S. focused, but again would love to hear global nuances on twitter or in comments below) on Social Security Disability reform. Yes, Long Covid now has a diagnosis code and is now recognized as a Disability according to the Americans With Disability Act., but what reform is needed?

1) My initial disability claim was denied suggesting there are other jobs I could fulfill. Based on my twitter dialogue, I'm un-employable. We need a stronger acceptance for Long Covid as a Disability (despite it now being recognized,) in my case it certainly doesn't appear to be recognized as a limitation. Some (sub)diagnosis may qualify on their own such as neuropathy. A good starting point is to have a diagnosis from your doctor or Long Covid clinic such as RTHM for Long Covid.

From Aetna, Providers should list U09.9 secondary to specific codes for ongoing conditions after a COVID-19 infection, such as shortness of breath (R06.02), fatigue (R53), myalgia (M79.1), multisystem inflammatory syndrome (M35.81), and others, according to new tabular instructions for the code.

I have had help from Mayo Clinic dating back to 2021 for diagnosis and assistance with (private insurance) disability and Social Security. If possible find an "occupational medicine" specialist--they are experts in dealing with employee/employer and disability.

(UPDATE: Since this original post, the (US) Federal Government does recognize Long Covid as a disability.

This guidance explains that long COVID can be a disability under Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973 (Section 504), and Section 1557 of the Patient Protection and Affordable Care Act (Section 1557).

2) Shorter approval periods. My "no" from Social Security took eight months. According to the Social Security Administration, they reject 67% of claims. Most feedback I've got is that percentage is quite low. For anyone that wasn't able to get private disability insurance benefits while applying and waiting for Social Security, how is someone supposed to pay bills, and keep their homes with this timetable? I have no idea how long my appeal will take, but I understand that many appeals are again denied and IF approved, it's in the third phase which is a hearing.

3) COBRA reform. In my example, I'm paying near $1,700 to continue my medical (dental, and vision) coverage via COBRA. Who can afford that when they potentially go to ZERO income? Whether it's universal health care or reform of the Affordable Care Act (ACA,) something's got to give here. Waaaay too expensive for any household.

4) Social Security benefit reform. In my case, with private insurance I'm getting half of what I was earning. I understand Social Security is potentially less. Suicide rates are climbing with this paradox; losing all your identity via limitations combined with an untenable financial situation is driving depression and some resorting to the unthinkable. Benefits need to be more in line with previous income history.

Overall (as seen in the Capitol Hill briefing, "Understanding and Addressing Long Covid and its Consequences" to the Oversite Select Committee on Coronavirus Crisis last month) we are clearly still at an educating and informative stage with our government. Dr. Verduzco-Gutierrez was one of the panel presenters and I'd highly recommend following her on Twitter. She gets it.

Perhaps if they realized this has a potential $16T impact (according to JAMA) they might do something for us. I'll save you the 1:27 minutes, we barely achieved cursory knowledge with our politicians, but I recognize the need for continued awaremess.

Back to the word, "fortunate." The entire paradox above is exponentially greater within certain racial, or socia-economic demographics. I have disability insurance. I (largely with my wife) and a portion of my brain have been able to navigate this complex process thus far. What about someone without disability insurance or the wherewithal to file for FMLA, engage a lawyer, or get creative around finances to weather this storm?

I'm not an economist but $16T sounds like a big "hit" on our economy; not to mention the moral obligation to take care of those like me that have been paying into Social Security since I was bussing tables forty years ago.

Income goes to zero + High Cost of COBRA + long process to get anything out of SSD = "You're F'ed!"

Diamond in the Sky

2023-01-10T15:18:00.002-08:00

I had an online twitter friend post a question last night, "People don't talk about Covid because________?"

My reply was simply a non-flattering image of "TFG." The same day, news broke that Lynette (Diamond) Hardaway of "Diamond and Silk" had passed away. TFG posted on "Truth Social" that "Diamond's death was totally unexpected, probably her big and precious heart just plain gave out."

Having my life (in what seems to be) permanently altered by Covid, I honestly would never wish the worst possible outcome on anyone. The second worst possible outcome seems to be permanent for me with Long Covid as I approach 36 months from the onset of my illness in January 2020.

This is a good time to point out that I'm not a doctor, nor a scientist, (or autopsy expert) but I certainly know more than most having gone through over 200 doctor appointments and following "credible" research sources (some of which are listed at the end of this post) around the world on the topic as I continue to try and snap the cycle of Long Covid.

I won't correlate Ms. Hardaway's death to Covid other than to point out she was apparently hospitalized with Covid in November.

Back to the online poll last night on why people don't talk about Covid. One reason I've pointed out is "story fatigue" similar to the Ukraine conflict with Russia. People generally get tired of a story and lose interest. That's certainly one component. The other (stronger) reason is the politicization of Covid; and subsequently "Long Covid" (or Post Acute Sequalae Syndrome; also known as PASC.) I wrote (or should I say VBLOG'ed) about this in my John Oliver-style "Mad Vax" post in July '21 on how Covid became such a political hot topic.

The short version of "Mad Vax" is that for some unforeseen political reasons, Covid started out as "I would love to have the country opened up and just raring to go by Easter" ('21.)

As I used to tell my kids, one "white lie" turns into another then a plethora of untruths follow. Trump's little white lie mushroomed into a political position that Covid is nothing more than the flu. I also believe it was greed and power as TFG saw the potential of what a pandemic could do to the economy, his re-election prospects and his "grift" of the office and American people. This evolved further into a staunch QoP political position against; science, research, quarantines, masking, and vaccinations. It also vilified Dr. Anthony Fauci, WHO and the CDC.

Enter in Diamond and Silk (D&S) as big fans of TFG. The conservative VLOGGERs stirred the conspiracy "machine" suggesting that it was invented by the media to make Trump "look bad." Um, sorry, Mr. Covfefe did a fine job of that on his own. The conspiracies did not stop there. D&S also claimed that "Quarantining people inside of their houses for extended periods will make people sick." Lest we forget that deaths were so rampant that hospitals ran out of room and temporary morgues were set up in parking lots for the spiraling death toll in 2020.

These claims seem somewhat benign but the Diamond and Silk's lunacy went "further down the rabbit hole" suggesting, "Bill Gates' desire for a vaccine was somehow aimed at "population control" and wanted verification of where the dead bodies were in New York City. Donning their "tin foil hats" they further speculated that 5G technology was being used to infect people with coronavirus.

Diamond and Silk are not alone here as James Woods, Jon Voight, Kirstie Alley, and Kevin Sorbo (among other washed up actors) all "angry tweet" against science and logic with regards to Covid-19. The late Ms. Alley got into a fracas with CNN suggesting the network spun up viewers in "sheer terror" over what might happen. Yes, death and dying can be scary stuff and actors are not scientists nor are they experts on Covid.

Regardless of which side of the aisle you sit on politically, it's obvious that Democrats embraced practical measures and Republicans downplayed the virus and any guidelines around protection or prevention. Unfortunately, words have consequences and virtually half the country (United States) subscribe to one stance or the other. The later can have deadly consequences.

Before you start your "whataboutism," my written wrath is not exclusive to the QoP. This year, Joe Biden famously went on 60 Minutes and declared Covid all but over. New variants continue. Deaths continue and Long Covid continues.

As a byproduct of not thinking Covid is real, there's similar wrath about "Long Covid" being a hoax or mental illness. If you don't believe in Covid, you're not going to believe in Long Covid.

This weekend, someone in my Twitter feed suggested, " it's bad that they're (people with Long Covid) too lazy to work and try to grift the government for money though." I quickly replied that I'd paid over $2M in taxes in my lifetime and have taken literally zero $ from the government in the three years I've been sick. He went silent.

Short of invoking "sheer terror" there are statistics coming out that risk of heart attack and stroke are significantly higher after having Covid, or experiencing Long Covid. Researchers adjusted for pre-existing conditions and found that after one year, those who had COVID-19 were 63% more likely to have some kind of cardiovascular issue, resulting in about 45 additional cases per 1,000 people. Risks were elevated even among people who did not have severe COVID-19.

I learned in my career that you don't complain without presenting answers. I've written ad nauseum about solutions. Unfortunately, (at least in the US,) there have been three House Bill introduced that all fall short of covering all the issues. All of them (shocker) have been authored by Democrats including Senator Tim Kaine who suffers from Long Covid. Now with the QoP having a majority in the House, I hold little hope that anything will be done. Joe caved into political pressure and now the party that think's it's a hoax is in charge.

Unfortunately, one little white lie about Easter snowballed into a political movement that creates serious headwind towards change. With that, I appreciate those that still stick to science and are searching for solutions (including but not limited to Professor Resia Pretorius, Putrino Labs, Professor Doug Kell, Dr. Wes Ely, RTHM, Dr. Claire Taylor, LongCovidPharmD, Professor Akiko, Dr. Monica Verduzco-Gutierrez, and Dr. Elisa Perigo) to help prevent death or permanent disability related to Covid-19.

Part of my point here is listen to experts; not actors, bloggers, VLOGGERS, or even necessarily politicians for advise on Covid. Consult experts.

The Diamond and Silk twitter account (which was reinstated from dispelling misinformation about Covid-19) has a donation page. No details about where those funds go other than funds go to Silk--her remaining sister. My condolences to Ms. Diamond's family.

Long Covid Actually: A Love Actually Christmas Homage

2022-12-21T16:09:00.010-08:00

From the creative group at Seeking Boston Marathon, I present to you a timeless classic holiday film, Love Actually sliiightly different. Long Covid Actually.

Enjoy!

Long Covid Brain Fog is not Fog: It's Brain Damage

2022-11-30T07:25:00.005-08:00

At my fifth "home" this year as a vagabond moving around as we rented out our home to cover some finances due to Long Covid, I was having my morning coffee with my wife and brother-in-law. Marc started to ask me something. Google Show was playing the morning news before I was to head out for my IVIG infusions and I told Google to politely shut up. Sorry, I exclaimed to him, " I have OCD and ACD." My wife quickly asked, "don't you mean ADD?"

I quickly retorted, "no I mean ACD." She then asked, "What does that stand for?" Like my late father who succumbed to Dementia this year, I find myself sometimes "making up answers" or explanations to my gaffes. "It's Attention Chronic Deficit," I explained. (Patent Pending.) We all laughed at the exchange--sometimes you have to laugh instead of cry--it's good medicine.

This is a tough post to write in more ways than one. As someone with Long Covid (famously coined Post Acute Sequalae Covid or PASC by "Saint Fauci,") one of the many symptoms has been labeled as "brain fog." I'll get into the "hard to write" part later, but first let's talk about that term I hate which is Long Covid "brain fog" or ACD.

Brain fog sounds like describing a compound leg fracture as a "lower body injury" in the NHL. Brain fog sounds like you're just a bit fuzzy and has connotations of a temporary condition. The later is yet to be determined. This is a good place for me to point out that I'm not a Dr, nor a Long Covid expert other than the fact that I've been living with it for 34 months. I'm certainly more of an expert than the ER doctor in October that asked me "what is Long Covid?"

Another thing I consistently point out (as relayed from world experts) is that we are still very much in the "research phase" of Long Covid. Having said that, there are recent studies that would indicate that "Timmy's little brain boo-boo" is not something to be taken lightly.

Just as there's a cascade of symptoms, there have been a cascade of medical studies on the impact on the brain. This morning, Carlos McCone (great Twitter follow for #pwLC) posted a WebMD article that stated, "People who got COVID-19 were twice as likely to receive a diagnosis of Alzheimer’s disease in the 12 months after infection, compared to those who didn’t get COVID."

Great...the gift that keeps on giving.

From the Medical Journal of Australia they state, "more proof COVID is a multi-system cluster bomb"--"bomb" sounds a bit more serious than fog to me. The most consistent description I get on Long Covid is that is a post-viral condition that attacks multiple systems in the body so "multi-system is right."

Phd candidate Stacey Rowe (and her MJA colleagues) go on to say;

“You are 15 times more likely to acquire myocarditis requiring hospitalizations following COVID-19 compared with beforehand."

“The incidence of hospitalisation with cerebral infarction was twice as high after COVID-19 onset as during the baseline period..Other investigators...have estimated the risk of stroke to be 2–13 times as high for people with COVID-19.”

Clinical epidemiologist Ziyad Al-Aly, MD, clinical at Washington University shared findings published Sept. 22 in Nature Medicine; "The results show the devastating long-term effects of COVID-19. These are part and parcel of long COVID. The virus is not always as benign as some people think it is...Memory problems — colloquially called brain fog — are one of the most common brain-related, long-COVID symptoms. Compared with those in the control groups, people who contracted the virus were at a 77% increased risk of developing memory problems."

One of my (future blog post? #longcovid superstars,) Dr. Wes Ely of Vanderbilt has an excellent series of TikTok videos (sorry...one social channel I haven't globbed onto,) and recently talked about how micro clots (essentially) cause brain fog (there's that term I hate again.) (Video post HERE.) One of my biomarker panels from RTHM (out of California) indicates I have vascular inflammation (sCD40L nearly 4x higher than it should be and VEGF over 4x.) Can you say "Maxi" micro clots?

But again "the jury is still out" on diagnosis and treatment as Dr. Ely shares in his video, "Why not just give them blood thinners? How to treat this is still up for grabs. We're trying..large controlled trials...talk to your doctor." Three other "gold standards to follow the micro clot topic are Professor Doug Kell, Professor Resia Pretorius, and Dr. Elisa Perego. Professor Pretorius recently visited with David Putrino from Putrino labs and discussed this topic (and I'm hoping) how to transform research-centric testing to be more ubiquitous. You can't exactly stroll down to LabCorp and request the "Fluorescence microscopy" micro clot testing.

If you're wondering how it may present itself; with me, I can best explain with a variety of examples--many I've chronicled here or I put in my phone to try and remember later.

Some symptoms present themself physically. My equilibrium is off using rails more often, sitting in the shower, and falling a few times--the later resulting in a broken bone in my foot and a couple contusions.

Dating back to my Today Show interview in 2021, I talked about picking out dinner to be picked up for the night. I recommended the restaurant (I can't remember the name as I type,) we ordered and I agreed to pick it up. Ten minutes away from the house, I pulled over to look at my Google search to remember the name and location of where I was going.

My wife has learned to recognize there are awkward pauses to questions she asks--sometimes out of habit (as she has spent twenty years with my "old self",) she quickly restates or asks the question again. I often abruptly snap, "I'm thinking!" Not something I'm proud of.

Just as my symptoms have "morphed" over the months, weeks, and sometimes within a day, my cognition issues have seemingly got worse. The latest is word jumbling; almost drunk I asked my wife to "chest the chicken (meaning check.) I will also lose words to things I should know. Similar meal exchange, I pointed to my wife's sandwich and asked, "how is your_____?" Drawing a blank she completed the sentence with "prosuitto." Of course I can't pronounce the word either.

My mental gaffes and gaps mirror Professor Louise Cummings recent Long Covid Survey including "I struggle to find words, I forget what I wanted to say, and mix words up." Go HERE to take the survey yourself if you have Long Covid and feel you are struggling with "Brain Fog."

My social activities are curtailed significantly but did decide to attend one of my closest friend's daughter's wedding this last summer. I figured, I could rest all day, sit through a short ceremony, have dinner and skip out on all the dancing and late night drinking. Alcohol and Long Covid don't mix.

The month before was the bridal shower. I picked up my wife and told my very good friend that I "didn't recognize your son" as he'd grown a beard and was wearing a hat. It was his brother. I knew this but jumbled the exchange.

The night before the wedding I ran into the father of the bride's sister-in-law. At the wedding the next day, I told her "I'm sorry we didn't get a chance to chat last night." She looked at me very confused, and said, "we talked last night." I brushed it off just as my dad often did when explaining lapses in memory due to his dementia.

On my disability journey, I had to go in for what I thought was a psychology interview--I freaked out thinking this sure smells like the gas from "gaslighting." The first 30-45 minutes was a function interview--can I bathe, what can I do around the house, and I said that mental activities that are intense (like my former job) I can only handle about 90 minutes worth before a symptom tsunami. I'd then have to take a nap that afternoon and likely call in sick the next day--in other words, "super employable."

What came next was a cognition test--in all it took about four hours. Think Trump and "person, woman, man, camera, TV." Both were pure torture.

I consulted my notes I'd sent off to my disability legal team on what I recalled from the session. Looking back, most of my notes were around my function, but the bulk of the four hours of "Helga's House of Pain" was the (Pearson?) cognitive test. Some shape puzzles, recalling details of a story, and as we neared the end, word combinations.

For some reason, the one I seemed to recall the most that day was woman/zoo. Perhaps because it was such a nonsensical combination of words. Other word combinations, I could tell I was guessing most of the time and guessing wrong. I also talking about reading and the fact that I've given up on novel/pleasure reading as I would have to read and re-read pages several times without recollection. I can't remember the name of the book I last tried to read.

I'd add that many of the articles and studies I've mentioned above, I have to either skim, certainly re-read, or jump to the conclusion section as Long Covid is a complex topic.

Brain Fog has been labeled (but couldn't find the reference) as "rapid dementia." In my case, I've seen a decline from '20 to '21 to '22. It's especially hard to hear that as my dad (preceded by the death of my mother this year) died from Dementia after a bout with (ironically) Covid-19. I'm not saying my dad died of Covid-19 and as harsh as it sounds, his Dementia had advanced to the point where he didn't have much quality of life. I miss them both as they worried about me until they died.

Now getting to the "hard part" of trying to put thoughts on (virtual) paper. As my cognitive issues seem worst at the 34 month mark. It's humbling and damning to one's self worth to admit you have issues with your brain. It's also hard to write as "the internet is forever." My wife (God bless her) reminds me of this often and I used to hammer that into my kids as they were growing up.

I still have hopes of returning to some semblance of my former self. The "brain fog" is one of those symptoms that I fear would prevent me from returning to any meaningful employment--that also assumes other disabling symptoms also go away. I "drift" into that fantasy future and imagine the hiring manager or HR manager Googling, "Ty Godwin." The results would yield my very public journey; my LinkedIn profile, Instagram, twitter, this blog, Facebook, and Today Show Interview back in 2021.

My "previous life" was in the telecommunications and software industry as a software sales executive. I sold complex solutions including analytics and cloud compute. This was a former art major in college so much of what I sold, I had to learn--with lots of reading. I'd built an amazing career but haven't worked in almost two years--I tried to work through illness for much of 2020 before going on disability and becoming unemployed.

Back to that nirvana of returning to my former self and going back to work, my manifesto doesn't exactly make me a desired employee so that's the final reason that this post is hard.

Trying to wrap this winding foggy journey post up, why would I share this? One is for awareness and advocacy. Many believe that Covid isn't real or no more dangerous than the flu. This is potentially a deadly misconception. Secondly is writing about this for me is therapy. Third related to the first is that I hope that awareness and my advocacy can lead to change.

There was a sliver of good news in terms of research in the USA (which lags the world on research) with Patient Led Research announcing this month, "The Patient-Led Research Collaborative’s Patient-Led Research Fund announced $4.8 million in biomedical research awards today, funding 9 research projects in Long COVID, ME/CFS, dysautonomia, and associated conditions." This is a great start as the NIH has bumbled (IMHO) the $B in funding notably passing on the micro clot research request from Putrino Labs.

Aside from research I go into greater detail on what changes need to happen in my recent blog as our Government seems to have "moved on" and is ignoring the Long Covid "tsunami" that's followed Covid-19. Thanks for reading, and keep advocating.

References:

Is it Long COVID, or Dementia, or Both? WebMD

https://www.webmd.com/lung/news/20221128/is-it-long-covid-or-dementia-or-both

More proof COVID is a multi-system cluster bomb: Insight + Powered by AMPCo:

https://insightplus.mja.com.au/2022/46/more-proof-covid-is-a-multi-system-cluster-bomb/

Professor Kell Bioanalytical Sciences Group Publications: (with Multiple contributions from Resia Pretorius)

http://dbkgroup.org/publications/

COVID-19 infections increase risk of long-term brain problems

Washington University School of Medicine in St. Louis, Kristina Sauerwein, Ziyad Al-Aly, MD, Clinical epidemiologist at Washington University

https://medicine.wustl.edu/news/covid-19-infections-increase-risk-of-long-term-brain-problems/

Dr. Wes Ely Tiktok (Long Covid Videos and Bio)

https://www.tiktok.com/@weselymd/video/7169280417600638250?is_from_webapp=1&sender_device=pc&web_id=7148137907597231658

https://medicine.vumc.org/person/e-wesley-ely-md

Man sick with COVID-19 for 14 months details struggle with brain fog and more: Meet Ty Godwin, a man who has experienced ongoing COVID-19 symptoms for over a year.

Tom Costello, NBC News Correspondent, Chrissy Callahan, Journalist Today Show

https://www.today.com/health/covid-long-hauler-ty-godwin-details-brain-fog-symptoms-more-t212614

Long COVID: The impact on language and communication: Professor Louise Cummings, Hong Kong Polytechnic University

https://www.cambridgeblog.org/2022/04/long-covid-the-impact-on-language-and-communication/

Thanksgiving Toast Cheat Sheet: 2022 Long Covid Edition

2022-11-23T02:52:00.003-08:00

Once again, it's that time of year in the United States when families gather for Thanksgiving. For those of us with Long Covid, it potentially brings a layer of anxiety as getting another round of 'the Rona" is not what any of us want for the Holidays. Many may avoid a gathering and others may have family that didn't vax, don't mask, and potentially traveled home for the holidays--all this raising the risk of another infection.

Aside from the Covid fears, there's also the subtle nuances of family dynamics. Uncle "Ed" who smells of Old Spice cologne and cheap bourbon wanting to nuzzle his cute nieces and nephews with his bristly 10AM shadow. Then comes the time during the dinner when someone prompts the Thanksgiving toast or "what are you thankful for" ritual.

In case you have anxiety over all this, I present to you, the "Thanksgiving Toast Cheat Sheet: 2022 Long Covid Editon" to help should the moment or words not present itself.

Dolly Parton. Please Help Long Covid!

2022-11-16T09:21:00.002-08:00

#DollyHelpLongCovid

Well hello Dolly. The word is spreading like wildfire on the internet that Jeff Bezos is giving you $100M for charity. I know you likely already have your designated charities. Please, please consider for a moment the Long Covid crisis. Upwards to 20-33M Americans are suffering from long-term damage from Covid; known as post-acute sequalae Covid (PASC) or "Long Covid." This is a global crisis, and due to the political "ping-pong" in our country, our government has dismissed this crisis.

What is Long Covid? It's a post viral illness that attacks multiple organs in the body including vascular, heart, lung, and brain. The symptoms can be maddening and endless including neuropathy, body spasms, tinnitus, vascular inflammation, brain fog (a polite way of saying brain damage,) and heart failure. In many cases it disables the immune system and wreaks inflammation havoc.

Trump mocked Covid-19, and now Biden has deemed the pandemic "over." It's not over. I used to run marathons and had a successful career in software. I have been sick for almost three years and haven't worked in two years. Our (USA) country's Social Security System is broken. Most are denied (upwards to 70-80%) claims and the appeal process takes months (mine has been in process over a year.)

I (difficult to say) believe my situation is better than most. My wife owns a small business and we've rented out our home over the last year. Others are losing their homes. Imagine those without resources to hire a lawyer to navigate this process? How do you pay rent or pay for groceries when you can't work while waiting over a year for a "no" from Social Security? Navigating this process is a "nightmare."

This is NOT just the old or person with pre-existing comorbidities. This affects children and healthy people like I was before getting sick.

Research is nearly non-existent in the U.S. in terms of funding. The NIH denied funding to Putrino Labs for the most-likely theory around "microclots."

There have been three Bills introduced to Congress but they are collecting dust. Our country has turned a "blind eye" to those with Long Covid and it's not unique to the United States (although other countries like Germany and South Africa are ahead of the U.S in terms of research.)

All of this despair has lead to a high suicide rate among people with Long Covid with the financial despair, loss of identity, and maddening symptoms.

So what's the answer? I have detailed my ideas HERE, but more specifically we need funding. Here are a few of my suggestions;

Putrino Labs: a group of scientists lead by David Putrino; clinicians, engineers, artists, and story-tellers with one collective goal: using technology to help people perform better. It doesn't matter if you're recovering from a stroke or preparing for the Olympics, we use technology to build communities, empower, treat and inform. Investing in microclot and other leading theories around Long Covid.

#MEActionNetwork: A global network fighting for equality for Myalgic Encephalomyelitis. #MEAction #pwME #MillionsMissing Donate: http://meaction.net/donate/ Now expanded to fight for those with Long Covid.

Body Politic: Grassroots health justice org at the forefront of the patient-led #LongCovid movement. Home of Body Politic COVID-19 Support Group. Info@wearebodypolitic.com

Long Covid SOS: Grassroots health justice org at the forefront of the patient-led #LongCovid movement. Home of Body Politic COVID-19 Support Group. Info@wearebodypolitic.com

BloomingMagOrg: #MentalHealth Advocacy 501(c)(3) nonprofit organization for people struggling with Long Covid. Provides direct cash payments to those in need. Need Support? Join us at http://BloomingMagnoliaNetwork.com

Love you Dolly. Hope you would consider helping those around the world with #longcovid.

#DollyHelpLongCovid

Goodbye Julie Julia

2022-11-02T12:06:00.002-07:00

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.

The "bad idea" of Googling yielded an image of that particular monocyte showing it's attention to the heart. I've posted Dr. Wes Ely's TikTok video describing the very real impact on the brain.

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.