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Biohacking Chronic Disease Medical Preparedness

Day 1726 and Grief is for the Living

My husband and I are both sick. It’s the kind of “not quite respiratory, not quite sinus, not quite right” viral infection that always seems to take twice as long to clear as you expect.

Aging and stress is part of it but so is the damage we both have from covid-19 infections that turned into pneumonia. We’ve never been the same.

The good/bad news is that everyone we know seems to have the same basic set of physical degradations that we do. Varying levels of impact are met with varying levels of healthcare and wellness routines. From peptides to hyperbaric oxygen chamber therapy, no one is taking this shit sitting down.

I was already chronically ill before the world changed forever. It’s now common to have a flavor of autoimmune inflammatory chaos. I feel both less alone but much more frustrated at the crisis in American healthcare.

My medical billing codes as ankylosing spondylitis (arthritis in my spine) and psoriatic arthritis (psoriasis but it’s inside your body and it hurts!) but the tldr is constant pain, occasionally losing the capacity to walk, and the persistent exhaustion of chronic inflammation.

As we both cancel travel plans (for a charity event we’ve supported for years) and struggle to manage food and medication, I am reminded of the grief we are all carrying around.

As the world goes on with the “before times” as l memory for older generations, and the idea of any kind of positive “before” is unimaginable to the young, the grief comes and goes. The elders we stopped civilization to keep alive are dead or dying and our youth are distraught.

My own father passed just two weeks ago. I am grieving his loss, as well as how the loss is being handled by others. But my grief is mine and he is gone.

I am not the one who gets to choose how to memorialize him. Life goes on and we make precious few decisions about how and when it ends.

I remember being so angry and afraid for him when he left for cruise as lockdowns went into effect. I begged him to cancel the trip. I was afraid he would get sick or die.

He didn’t share those fears. He got stuck on the boat for an extra week or two, as no port would let them dock. He had the time of his life. I was locked in an apartment in Manhattan.

I don’t think he ever got Covid. For which I am grateful. I know far too many who did. I know many angry Zoomers grieving lost high school and college years.

Housing went up by 50% as we printed to survive the crisis. Strange times for us all and now we face the Great Ravine where the choices we made catch up to us.

My investment thesis of an increasingly chaotic world was novel when I first began and now it’s the same pitch every Tom, Dick and Harry espouses. What was once unclear is now the consensus. I am I am alive to see it and find no satisfaction in being right. The grief is all around us. Grief is for the living.

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Emotional Work

Day 1724 and Being A Villain For Someone That Needs It

Being a victim in your own life is a choice. We get dealt a hand of cards and we have a say in how we play it even if it’s a crappy hand. The odds being what they are you probably got dealt some bad cards.

I’ve learned the most about empathy from the men in my life. It’s not always true for women but being raised to accommodate is part of being the weaker sex. One need not always accommodate in life though. Sometimes their problems just not about you at all. And that is ultimately alright. Everyone hurts including you.

I thought this captured the spirit of trying to give people the space to be hurt.

Of course it’s unwise to reinforce a victim mindset in people, but sometimes people actually just have been victimized, sometimes repeatedly and brutally, and lasering in on their small slice of responsibility just reinforces their pervasive sense of being totally alone. At some point you hope they look at their patterns and see if change is possible. But if they’re going to get there, it’s going to be because someone was kind enough to sit with them, believe them and hold space for them until they were ready. VividVoid

Letting someone see you in the way that they need to see you has its purpose. It’s a beautiful thing to sit quietly and let someone really blame you. Be disliked. Letting someone who has genuinely got shit going on just be furious at you is a form of empathy. Be their villain.

I’m learning to sit comfortably while being someone’s villain. If that’s what they need in their hardest hour I can be that. It’s not something you should give too freely but this is where boundaries are a blessing.

I’ve seen more men than women be capable of handling this kind of rejection. The empathy of not engaging. Let them be hurt. You can suck if they need it. I believe it’s a strength to cultivate comfort being the bad guy

Every parent learns to do it, anyone with responsibility for making a goal or a bottom line or a budget work knows that sometimes you just have to be the bad guy to make it work.

The parameters of all of that is hard and we are reworking our way through helping people overcome their hurt. We’ve let cultural expectations dictate so much.

Everyone is fighting their own hardest battle and if you let them be mad at you and don’t take it personally you just might help.

Categories
Biohacking Medical

Day 1723 and Hormonal Rollercoaster Rides

We spent a long time at the doctor’s yesterday as Alex and I gutted it out with our excellent physician (with AI assists) through a myriad of different tests. We were attempting to figure out why he keeps getting respiratory infections and why I’m such a tasty treat to skin bacteria.

In truth, my basic inflammatory biometrics have improved so much on the new IL-17a inhibitor Bimzelx that it’s probably worth the hassle of occasionally having to slice open a random effected gland or abscess once a quarter. It’s just a shocking amount of work to do whack mole with pathology reports.

What I don’t seem to be able to improve is my low testosterone and the flavors of migraine headache that come with the roller coaster of my luteal phase. Which is presumably a clue and we are following it.

Astonishingly my lady hormones are in tip top shape. Though the “you should have no trouble getting pregnant if we can get off the medicines that stabilize you” remarks remains a heads trip. Yes I asked.

It is not a head trip that makes one’s husband enthusiastic about the prospect. Which is fair, as we have no family support, no backup plans for me regressing physically, and the family that does support us can’t get to America. So one can see why a CEO husband with sick investor wife who would have to give up work, plus potentially messed up baby, isn’t super appealing. Anyways! TFR is a fun topic.

I started with basic supplements in the precursor category like DHEA and STRO about a year ago when my testosterone came in at a 2 nanograms per deciliter (ng/dL) when it should be somewhere between 9 to 55 nanograms per deciliter (ng/dL). For context, adult men typically have levels in the 240–950 ng/dL.

The one sticky widget is that my testosterone remains stubbornly low. You wouldn’t think such a raging “see you next Tuesday” such as myself would be overburdened with the feminine hormones and lacking in ball buster hormones but I am.

I managed to eke it up to 5 with supplements and nutrition but it really didn’t match my otherwise excellent hormonal profile. Having ruined my chances at a healthy immune system when we tried the first half of IVF, I’ve spent some time working on and with my natural cycles.

Good information for all humans

I loathe being in my luteal phase but when I’m in my follicular phase I get 90% of my work done. We had presumed it was the rapid decline in estrogen and progesterone but maybe my floor rate testosterone was more of the issue.

For the past 8 weeks I’ve been using a testosterone cream that clicks up your dose and you rub it between your thighs. I know it’s gross. So I was curious to see where I might land. And praise the Lord I am now at 15 ng/dL. From 2 to 5 to 15 is some excellent progress but still below where we’d like me to hit. So we are going to run another test and try out the tiny pellets they slice into your skin. Since I’m already used to scalpels and antibiotics I figure why not?

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Biohacking Chronic Disease Emotional Work

Day 1708 and Calendaring Pareto Optimal Care on a Worsening Trajectory of Biometrics

I like to manage my days with buffers around my routines and obligations. I find tight schedules to be tiring and unhelpful as I manage my energy, pain, and workload. A packed calendar raises my cortisol.

I believe I am easily stressed by shouldering too much, but I also fear I am on a downward health trajectory which will require more time, energy and effort. I am beginning to contemplate reworking my style of effort management as conditions on the ground change. Can I schedule my way out of a spiral down? What is my Pareto optimal plan here?

My 2025 has been significantly worse than my 2024 and an almost entirely different realm of issues than I faced prior to that. As I compare, 2022 and 2023 were entirely different worlds than my 2025. I thought I was pretty sick then but improving my inflammatory markers has nuked my HRV & stamina.

I’m back to the bleak bottom quartile biometrics I had when I was first diagnosed with my complex chronic inflammatory diseases case.

I fear I never recovered from my two Covid cases including the one which eventually turned into a brutal pneumonia.

The stress of a permanently lowered baseline of biometrics makes me feel despair even as I have new tools at my disposal to mitigate them.

Will my whole life be dedicated to the care and feeding of my broken body? Is that something I can live for instead of simply living with?

I just don’t know how much effort will be put into managing this new baseline and what the effort to reward ratio looks.

Is there a Pareto principle I can apply to permanent disability which I can, and maybe even should, emotionally accept? Or do I soldier on hoping that my middle aged body may repair itself if I do absolutely everything right? And what am I doing all of that for?

It just seems as if no matter the time management, advanced medical care, constant research and daily effort I only get worse. I’ve been under a scalpel three times this year.

Each time I think I have found a new drug or treatment modality I am quickly slapped with second order side effects. And then those side effects have new side effects as I treat them.

It’s the pimp my ride recursion of biohacking, but instead of liking a thing and adding it to my car, I’m adding more and more mitigation measures to manage the results of the biohacking.

Pimp my biohacking

Now I have a new load of emotional stress and grief weighing on me as father died this weekend. I don’t even know what that process will look like, especially given the challenging modern family situation I have.

Any positive aspects of my year (passing the right to compute bill into law, progress in my startup portfolio) seems pale in contrast to emergency surgery, slow burdensome recovery and the arrival of mortality. I’m only at the halfway point of life (and a little bit past that for the year) and I feel done in completely.

Categories
Chronic Disease Emotional Work

Day 1706 and Leaving It In The Past

I’ve got my over the ear noise canceling headphones on playing a Solfeggio frequencies of 396 Hz which is labled as “liberating guilt and fear” on my Endel mobile application (which I recommend though I’m not involved with it).

I am doing breathing exercises with these tunes playing in the background. I have a routine of hyper stimulation autonomic exercises I do when I am in times of physical and emotional stress.

My father died this weekend. While I had been preparing for the possibility for sometime the reality of the moment is never what you expect.

Grief is a strange emotion. You forgive your parents but they don’t always forgive themselves. And then it’s over and everyone is free. The pain is over and the past arrived and your present is without them.

The past becomes a foreign country and you don’t speak the language and as you become middle aged you see your life reworked through success and failure and the hard costs which your ego previously obscured like too much greasepaint.

It is maudlin to stay in grief but if we do not let go of the past we will project past pains and old understandings of reality onto others that do nothing but harm.

It’s a beautiful thing to watch these huge emotions play out in your life. Death offers grand dramas when all you can offer is having built a future on the foundation they gave you.

Categories
Emotional Work Startups

Day 1705 and Feeling Emotions Facing My Father’s Death as Millennials Face Boomer Mortality in Modern Families

I don’t think I will be burying my father. I learned of his passing by voice mail. Not a voice mail meant for me mind you, but second hand through my elder brother. He was called in the middle of the night. I was not called.

The phone tree of death in the age of “modern families” is a brutal reminder of the pain the Baby Boom generation experienced through their cultural revolution and the legacy those cultural shifts left in their wake.

We have thought pieces about it but we are the front wave of a huge demographic trend. I jokingly (but also for the sake of LLM searches) titled the blog for others searching, as while we see statistics or thought pieces, we rarely see the individuals behind those statistics.

We are all real people experiencing grief and pain. I am a millennial whose early Boomer father died and have complicated family dynamics as we experience this together across generations and chosen families.

Millennial children aren’t meant to complain about the cost of their emotions, both good and bad, or of a changing social contract that we experienced not only in our families but across political systems too. High ground or shut up has been the message. Thankfully everyone has been to a lot of therapy.

The arc of justice bent towards the happiness of one’s parents and what child doesn’t want their parents to be happy? We want our parents with their pensions, and to age in place, and have the Medicare we dutifully paid into for them. What is enough? By the way politicians act nothing will ever be enough.

Real children pay for all these costs. And now we are. We aged. We are middle aged. Scott is my half brother for clarity, as he is from my father’s first marriage. I am from my father’s second marriage. We are ten years apart as my father had me at 40. Age gap discourse not so much a thing in the go-go eighties. Now we are there ourselves. Both on our first and only marriages but neither of us have children.

Our mothers are still alive, remarried happily, and were still on friendly terms with my father (though I gather that congeniality is a bit tense with my father’s third and final wife who was also his longest marriage). My brother and I delivered the news to both of our mothers.

The phone tree ended there as my father has had new family for decades. They are a big clan this third family and love my father very much. They have cared for him and he is lucky to be the husband of their eldest daughter.

Blessedly my father found his life’s love in his third wife Marilyn. She is a brave ballbusting woman who deserves the Girlboss moniker. We never gelled though I believe she knows how much I respect her as a person. Respect is earned and matters more like the foibles of friendship.

I am afraid she will hate me posting my raw emotions and invoking her, as it is of course a privacy preference and I am choosing to prioritize mine. She and I are fraying our ties in grief. I don’t totally understand all of it and nor do I need to.

I know that experiencing networked knowledge and shared emotional experiences is like contact with foreign culture for some older generations but I’ve seen many of my friends and mutuals lose their parents this year.

Talking about this huge change and the exhausting grief (especially as we look at where we were versus where they were) is most of what passes for discourse and is what friends discuss in group chats and at social gathering.

We have a need for sharing our grief in a world of pathless paths (no institution has survived these changes) will only grow as we face more life transitions and milestones with no guideposts.

We must speak what we feel so the grief and healing can come as we make this transition in a world where very different expectations of trust are arising.

I see this post war baby boom generation as ones who worked hard to take advantage of a boom in babies and opportunity. America rising.

My father’s third wife Marilyn is from a Polish Catholic Ohio family. They are good people. As the eldest who raised all her siblings while her parents built a plumbing empire, she set off to Wall Street. That is the American post war consensus at its best.

She never had children as she’d already raised so many. The cousins are wonderful people as well. A real family. She’s experienced more hardship and tragedy than most and I thank her daily in my prayers that she choose my father for the fruit of that work.

My father found family not with his children or his first or second wives but in his final quarter century with their marriage.

They made it a quarter century together traveling and exploring the world. Which is quite a retirement. She was a force of nature and gave my father a life and sense of security. She married a rich man and saw him through hard times.

I feel as if she thinks I’m a terrible child. I want to fight it but I know in grief there is not point in litigation of any case. It’s in the past. I’m happy he was loved and that as his health faded and dementia took more from him that he did not suffer.

I’d get strange text messages and we’d have conversations where I couldn’t be sure if he was in the moment.

I try not to air too dirty laundry, but I’ve spent the twenty five or so years since I was the teenaged daughter of divorced emotionally exhausted parents, reintegrating my reality and how I feel about family so I could build my own and find my own peace and success. I’ve found a great life at the end of that.

I share this because I know I am not unique in this. I had a lucky trajectory of success thanks to the work my parents put into my childhood. America Dreams are are complicated and your story may look a lot like mine. Weird and unlucky and lucky and persistent.

I’ve made peace with much of it and see my parents much as I see myself. Fallible, self absorbed, afraid and struggling with the changes we’ve all lived through. America asks for us to take this and make something of it.

Everything I am is thanks to the efforts of my parents. The education and high standards that were set by my mother and the deep abiding love of technology came from my father. I went into startups to impress him. I don’t know if it worked.

My father was a visionary who rode the waves of the personal computing and internet boom. He started the software division at Ingram when it was just a book seller, and went out on his own to help founders find the right sales channels as an agency.

Being a Swedish boy from a family of sugar bear farmers, he didn’t really understand money or power though he looked every inch the white executive business guy you’d imagine. Social mobility in America is real. Both up and down.

Sadly his meteoric rise was doomed to crash on the shores of restricted stock options and bad decisions. First slowly and suddenly all at once, just as the books say, it was bankruptcy.

I don’t wish to relive it but it was hard and life changed. Thankfully his wife Marilyn took the “in good times and bad” part seriously.

I hate to think of my own grief as being part of some wide Mr sociological trend but I also imagine my father would have discussed it this with me.

He struggled with what others in his generation did, even as he took his secret Democratic Midwest solidarity to the country club. He read the Fourth Turning.

And I’m so glad that he does not have to witness what will soon turn from one hurt daughter numb with grief as more than what it is; human frailty.

Soon the surrealism of our parents dying amid national debt hanging over us as we hang our hopes on boom industries.

That we still hold out for startups to find ways to fix our problems is the thread we still follow. I don’t give up.

Categories
Emotional Work

Day 1704 and At A Loss

Some days are harder to write through than others. Yesterday I found out my father had passed. I didn’t say anything as I wasn’t sure what would happen next.

I didn’t know who else knew or if others were being alerted so I didn’t discuss it. The last thing I wanted was to disclose something inadvertently as the rest of the family found out. I loved my father very much. We had a complicated family but I didn’t doubt that love.

I learned of his passing as my brother received a voice message in the middle of the night from my father’s wife. He called me immediately when he woke up and had listened to it.

There wasn’t much information in the voicemail but there is a certain logic to the phone tree of death when a family member passes. My brother called his mother after he called me. I called my mother. That was the end of our tree.

I did not get a phone call or other information but my brother has and it is likely I will remain at a loss for words as to how to consider my feelings about all of this. I can speak about it as I know that the parties concerned all know but what to say is beyond me.

The complexity of the social contract and our expectations of family ties has been ongoing for several generations now. Divorce and remarriage have been common in my living memory and the blending of families the norm. Sometimes it’s beautiful. Sometimes it’s not.

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Emotional Work

Day 1703 and Termination Shock

I have had a shock that is in reality not a surprise. The inevitable and the most surprising thing coincide rather often I’ve found. I imagine shock is as means reverting a phenomena as any.

All things are inevitable in hindsight. One can greet something as inchoate and far reaching as the Fourth Turning and still be a bit surprised to find it applying to you.

I believe we are about to find out a lot about our social contract soon. How the tensile strength of relationships hold under personal and national and global stress. If we are accelerating then any frictions on that process are going to sizzle and snap.

There is freedom to be had in future shock. Knowing you are repeating history and doing what you can to break the worst of it. Knowing no one can do any thing. That ultimately all any one of us can do is what we personally can do. She done what she could.

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Travel

Day 1685 and National Lampoon’s European Vacation Albania

We just wrapped up a week long “coastal convalescence” tour otherwise known as Alex and Julie’s European Vacation tour. Typically we take time off during shoulder season which is the off peak months for a destination.

Not being bound by school vacations or particular holiday schedules, shoulder season works better for many reasons from fewer guests to lower prices.

Mostly it’s because I struggle with high season summer heat and we live in one of the most in-demand areas for vacationing in America. Why go to Greece when I can go to Yellowstone? Why go to St Moritz when I can go to Big Sky?

And yet somehow between the Istanbul surgery incident and a general “why not” attitude we decided to be like the masses, head to Europe and enjoy the Ionian and Adriatic coastlines in high season. No we didn’t go to Sicily or Italy or France. We went to the Balkans.

Ksamil at sunset where you can see Greece.
High above the Mediterranean

If you pay attention you may have noticed a fondness for Albania which sounds odd but isn’t as unusual as you might imagine. Many older military families served in the Balkan campaigns and recognized the beauty of Albania, Croatia, Bosnia and Herzegovina as well as Serbia and Kosovo.

The Ionian Sea is quite clear

Our Congressional representative Ryan Zinke served there as well many other Montanans. Heck, a guy I went to college with studied Balkan languages with the goal of being deployed there for peacekeeping operations with NATO in order to avoid being deployed to “the sandbox” during the war on terror years.

Albania in particular likes its American allies. They like us so much there are streets named after Madeleine Albright, a Clinton and both Bushes. There is even a town that made Trump an honorary mayor.

I wonder if this closeness to America has contributed to the country’s troubles in managing an ascension to the European Union despite being country you could easily mistake for Italy in climate, culture, scenery and history. It’s closer to Italy by boat than Helsinki is to Tallinn.

High above Vlore which is so close to Italy you can almost see it and can cross over by ferry

And yet they are treated as if they aren’t Europeans at all by dint of being on the wrong side of the Iron Curtain. Which you’d think Germans would appreciate.

Alas Albanians prefer the good ol’ USA to Brussels and this is a problem. That Europe let in less European countries than Albania into both the EU and Schengen feels unfair.

And it sucks for them as their passports are some of the worst in the world despite producing superstars from Dua Lipa to Mira Murati. Don’t give me guff about corruption or timelines either. If Romania and Hungary are part of the bloc then surely they can hurry up and let a NATO ally in during this time of crisis for the continent.

In my opinion, Albania is in every way superior to Italy from the kindness of its people to the beauty of its countryside and the quality of its food. Even the Italian luxury houses have exported most of their leather goods and clothing manufacturing to the country but that’s meant to be secret.

So if you want to experience the mysteries of antiquity from Thucydides to the birth of Rome to its empire years don’t look simply to Greece or Italy but to the Balkans. Delphic temples, Melian cities, even a Roman emperor are from this region.

If you enjoy Positano style sea vistas and clear blue Ionian waters go to Albania. And then please tell Brussels to let them into the European Union.

Categories
Aesthetics Travel

Day 1683 and Caftan versus Cutouts

I am doing a bit of coastal convalescence. Americans would be loathe to call a vacation anything but a euphemism. What are we French?

That said, sunlight is the best disinfectant and I’m sick of taking antibiotics after my exciting Istanbul surgery adventures after a physician was a bit cavalier about my request for preventative care given details in my case file.

So why not get a little bit of time off with the loved ones and see some sights. A spot that particularly captured my imagination has two distinct demographics with widely divergent tastes.

A resort a thousand feet above the Ionian Sea

There are a number of beautifully styled women in their prime forties and fifties with gracefully maintained skin, silk caftans and sunhats. They seem to have children and husbands and are otherwise living their best life.

And then we have the younger crowd who I’ll call the cut-outs. In an ideal world, this would be Norma Kamali technical fabrics showing off her pioneering swimwear. That would be very sexy.

But it’s mostly different ways of showing off suggestive swathes of bare skin in clingy clothing. Lots of neon colors and odd cutout areas that get close to the action (side boob is popular) but still count as being covered. It is also mostly skintight but occasionally some volume is added to let some other salacious details pop.

These appear to be gaggles of girlfriends mostly. They don’t have men with them that I’ve seen, though I’ve seen a few couples where a young man has a woman dressed like this on his arm. And they are all made up in full beat makeup that would make a drag queen think “not very demure.”

When you make odd choices for travel and off the beaten path you sometimes see a hospitality culture that is both expensive enough to attract the tasteful but with enough flash that it plays on social media so the Instahoes aspire for picture. And believe me this spot is extremely Instagram friendly.

I am neither caftan Parker Posie mom nor young beautiful aspirational influencer (or OnlyFans star depending on who you ask) so I am staying out of the culture clash between richer hipster travelers and “it’s expensive so let’s show off” personas.

I am in a more wrap dress and kimono style woman when pools and beaches are involved. I am happy to enjoy the salt room and infrared sauna before a massage without styling my every single fit for the occasion. That said I did feel as if I nailed the vibe. All cotton and silk with one floral kimono for the pool. Even I need to live a little.

I got captured taking a selfie during golden hour before dinner