Categories
Emotional Work Medical

Day 1865 and Letting Things Fester

I let something fester for far too long. A family member had some health troubles that were not immediately threatening and I didn’t want to push them. They promised to see to it after a lengthy set of other issues were resolved.

Well, now the list was all finished or at least that is the rationalizing we are all doing around it, as it’s gone too far to be left alone. And it has to be seen to with a surgery.

Now they are healthy, young and the damage can be undone with a little science but I can’t help but feel I failed them. I knew they were leaving it to fester but the first rule of medical ethics is informed consent. The patient chooses even if you think you know better. This goes for doctors just as much as family.

And so here I am feeling guilty that I knew they were putting it off based on actions that I was partially responsible for resolving. They kept pushing it off citing this and that needing to be done first.

Now budget was an oft cited reason and I aid on that to some degree but it was really about a whole tangle of issues or managing till it was unendurable. And I don’t control their endurance or capacity to tolerate discomfort.

I know I couldn’t have done anything to force the issue, especially when the pride of an individual is concerned, but I still feel like shit about it.

Why couldn’t I have pushed forward the other issues and projects to rid the excuses? Why wasn’t I more forceful insisting they get it looked at sooner?

You know how guilt works when you have some responsibility but no ultimate say in the doing of the deed.

Not only did they let it fester but now it will fester with me as I try to forgive myself for something I couldn’t have changed. The body is sovereign and it wasn’t mine so I better let it go and help them recover.

Categories
Chronic Disease

Day 1863 and Head Above Water

Yesterday I wrote that I had no gas in the tank. Today is not much better. I am barely keeping my head above the proverbial water line. I finished a major purchase which I thought would give me respite for a few days.

Alas changes in destination, an emergency dental appointment for a family member, and the promise of rest was more like a promise of fretful semi-consciousness.

After days of rushing around seem to have swept me off my feet and into bed I still am not quite rested.

I thought I was mended yesterday but it seems as if I’m on the second day of exaggerated sleeping patterns with long arcs of sleep in the wrong places and times. Add in a bit of overheating on top of it and something feels off.

It’s not unusual for me to absorb major changes and shifts throughout their unfolding via some migraine induced osmotic pressure. I feel the animal spirits and global vibes push in past my physical limits and I shut down. I hope I’ll reboot soon.

Categories
Biohacking Medical Travel

Day 1856 and Always Something So Always Trying Something

The world is a topsy turvy place and I am doing my best to meet it head on. Physically I’ve managed a surprisingly steady period from December through January, even though I spent a decent portion of that on the road.

I credit this mostly to using antibiotic and anti-fungal regimens prophylactically. The biologic immune suppressant I currently take for my ankylosing spondylitis is quite frankly too good at its job. And I’ve tried quite a few.

That means I am locked in a battle of constant vigilance in order to keep my inflammation numbers down while also not becoming a host to bacterial, fungal or other infections. It’s a balance that is anything but delicate.

In 2025 I had been unable to fight off skin, soft tissue and mucosal infections seemingly at all. Even with extensive protocols for decolonization (intranasal mupirocin, chlorhexidine washes, environmental decontamination) I had four major infections.

Of those infections, three required surgery and the fourth was the result of a very minor incision to insert testosterone and estradiol pellets. Those surgical interventions proved very trying and also very expensive.

The last one (testosterone) helped quite a bit with energy but being energetic doesn’t matter much if you can’t fight off infections.

So while I know there is an individual and social long‑term systemic risk in using antibiotic prophylaxis, I will say it does seem to be helpful in mediating say outbursts of allergens flaring into soft tissue infections from skin breakage or having exposure to molds and fungal growths that fester in old damp buildings and water systems creep their way into any opening available.

Since it is always something, I figure I need to always be trying something. Frankly I am over the push and pull of managing medical care in America. It’s a mess and mostly designed at risk mitigation for the health systems.

I have found going abroad to be much more useful and cost effective in many cases. I may even find that it would be useful to document the experience in a format beyond a blog as I doubt I’m the only person manage complex chronic disease.

Categories
Emotional Work

Day 1853 and American Boomer Betrayal

I wish I could shake some of the grief that has gripped me over the past few months. I grieve the revelation of human truths I wish I did not know. And underneath the grief, I feel betrayed.

I feel betrayed by my elders, my country, its institutions and the power structures that have bounded my life and its path. It feels dramatic when I write it down but I know it to be true.

I have kept a lid on these simmering feelings because I am too afraid to unearth more truth that has the potential to rewrite my life and the internal (and external) perceptions of who I believe myself to be. And yet it is only change that has the power to overcome the entropy that destroys life. And that includes mine.

My feelings of betrayal seem too too ugly to look at and shake any sense of security or belonging that I might once have had. Which was in precious little supply already.

I don’t wish to be histrionic about it, but I am not the only American millennial who feels this way. I know many American Zoomers feel it more deeply than I do.

And there is plenty of evidence to support these feelings, which makes it all the worse. Feelings are not facts but there are facts beneath these emotions that are hard look at.

I don’t know why I cannot seem to unearth or articulate enough of my emotions to help me let go. I feel I have forgiven so much and it hasn’t been enough to change things. They say that betrayal creates a “double wound” as there is the act itself, and then the shattering of our belief in the fidelity and values that had scaffolded our lives.

I don’t want to look at the grief and betrayal straight on for reasons I hope I can slowly reveal to myself and others. Whatever protection it offers my ego and inner child must have some value but keeping things hidden is not helping me

I going to try to articulate these feelings, even if I am afraid of putting such enormous vulnerability out for scrutiny. I’ve done it before and it has only ever helped so I must find some courage to go further.

It’s not that I think anyone reads, or even notices what I say here, but rather once something is written into our public networks it stays. There is a reason “the word” has had such resonance for creation in faith. By writing it into a record I will create something that is real and will have consequences.

The relief I felt at the passing of my father at the end of last summer embarrassed me at first. I wanted to feel sadness, loss, love, and absence but all I could see was relief that he was gone.

I wished for more change and endings before the hungers of the past’s needs would eat more of my present. And I knew it would not come unless I made it so. Saturn devours his son. The son must slay his father.

I loved my father so deeply that I shaped my whole early life around impressing him in the hopes that he would find reason to be more present.

No achievement or milestone was ever enough to change his orientation and availability to me. Still I forgave him. He gave me so much. At the end I do not know (and must contend with not ever knowing) if he forgave himself.

This personal tragedy has anchored my feelings on the generation above mine and how they have conducted themselves in the management of America and all of its institutions.

The trust and fidelity has been broken. From education and health to politics, cultural and monetary systems the harms have compounded and the healing is slow. Family forgive but society needs scapegoats. And that makes me fearful.

The only systems that I feel has not actively betrayed me remain market capitalism and the edifice of our informational technologies. Ironically there are huge swathes of my generation who feel those are the systems that have harmed them the most.

I do not believe that free association and information are harmful. Indeed I see them as entirely beneficial even when there are obviously individual harms that the abstractions do not reveal so easily.

Some believe humans were simply not meant to live at a scale that showed us a world beyond our roots. How can we remain true to any values when all ruptured and greed, disgust, treachery and disloyalty is laid so bare and in such a brazen manner? To err is human and seeing our sins at such scale is a grievous harm we must overcome.

I myself am unsure if paradise lost to wider wisdom is only harm. We eat the fruit of the tree of the knowledge of good and evil and now see sin. But we also reveal the sustenance of divine love and redemption. Malus is not the same as malum.

Perhaps it is precisely because it is the wider world that has nurtured me even as family, elders, and institutions have ravaged the basics of life that I can see this horrifying but beautiful whole.

For millennia we have grounded the rituals and meaning of human life at a smaller scale with fewer hidden truths. Now it is laid bare to us all.

I am a citizen of the world with wealth but not health. I have built a beautiful family and marriage but likely will have no children. I have an incredible community of friends but we are scattered to the winds.

The personal middle ground of my life doesn’t exist because of the hunger of a generation and a nation that cared more about themselves and their reach and power than the future that would obviously arrive.

As younger generations wait to take the reins of their future, it threatens to never arrive. The grip of the past refuses to let go. And I wish to pry open that grip so we may try and do better.

They did the best that they could. And it hurts so much that it was not enough. The fear remains our efforts won’t be either.

Categories
Biohacking Medical Travel

Day 1846 and Doctor’s Orders

I have had a lot of experience with doctors over the last few years. A chronic autoimmune condition isn’t the sort of illness that gets “better” like a virus. It can only be managed.

I have come up with endless ways of collaborating with people who far too often believe they are more informed, powerful and intelligent than me.

Sometimes they are even right about that perception. It’s a frustrating fact of life that doctors value their status occasionally more than their patients.

Today I went to a tourist hospital renowned for its extensive offerings and professionalism. My usual interpreter (it’s in a foreign country as many nations from Mexico to Turkey to South Korea serve American patients) had a number of procedures and visits organized for me. I felt confident I’d learn a lot and maybe find new pathways to healthcare management.

I happened to have an aesthetic elective treatment first. A plastic surgeon met with me to refresh some Botox. That seemed excessive given a nurse does my light work back in Montana but why not get a professional opinion while you have the chance.

I’d intended to spend the afternoon at the hospital doing a number of more productive activities than smoothing my fine lines. I’d set up rheumatology and immunology lines of questioning and I was excited to get some holistic work done including ozone and an IV infusion of vitamins and minerals.

Alas I was stopped in my tracks by a physician who simply would not approve the IV I had set up, the ozone work, nor would she approve the alternatives I suggested (an intramuscular B vitamin shot). I made my case with the interpreter and my AI.

The doctor wouldn’t budge. She even obfuscated suggesting that glutathione was illegal though backed down when it turned out to be a malpractice issue related to compounding pharmacies.

I very much wanted to buff up my immune system, especially having chosen something elective to go first, and I could not make progress. It shut down my whole afternoon. All that was left was tests and waiting.

There was no order the doctor was willing to give for short term immune improvements unless I committed to five weeks of procedures which given it was a tourist hospital seemed a little ironic.

I am demoralized but doctors will be doctors. I never seem to manage to convince them when I really need it. Doctor’s orders are not always for the benefit of the patient. Maybe no one wanted a woman sitting around hooked up to a vitamin infusion. Who knows. I probably would have skipped the Botox though.

Categories
Aesthetics Biohacking Travel

Day 1845 and Lake Effects

I feel a ray of optimism emerging like a bulb who mistimes a false spring in late winter. I am in the dead of winter and I have the first glimmers of light.

“How you do one thing is how you do everything” is an aphorism about character that would take a natural born contrarian to engage.

I made a series of small decisions to keep myself still and make use of resources and skill clusters so I didn’t have to stress myself for a timeline that I didn’t make.

I took a few days to back off into medical tourism and longevity experiments. Nothing fancy or even novel. I wanted good sleep and a classic NAD+, Myers Cocktail, essential trace minerala, glutathione, Alpha-lipoic acid. Just good clean anti-inflammatory fun.

I want the good decisions about sleep habits and nutritional choices (sea bass, shaved vegetable salad, prawns and artichokes), the good exercise decisions (mobility and V02 max if I can’t push muscle too hard without impacting my my nervous system’s vagal tone).

I feel so lucky that this is a choice I can make. I need to be in fighting shape or the compounding choices of my health will have the wrong trend line. I want to see our future.

I am breathing slowly and watching a kind of lake effect whip up the water in the pool outside giving a fluid dynamics show to anyone who loves the movement of water and wind. That makes me want to live in our present.

Categories
Aesthetics Biohacking

Day 1843 and Does Enya Listen to Herself In The Bath?

As a woo child of the New Age 90’s era of music, I love listening to Enya in the bathtub. Pure Moods and a hippie mother set a tone for bathing for the remainder of my life.

Alas in Montana we do not have a bathtub in any of our bathrooms. We have a hot tub but the chemicals bother my skin so I only get to enjoy a bathtub when I’m traveling.

And you better believe I have Enya downloaded on Spotify for those occasions even though I’m certain at some point we probably owned all of her music on tape and CD.

While I love the classics (who doesn’t want to sail away?) I had Wild Child come up as I was soaking up magnesium yesterday. Which is not a bad checklist for becoming present in the moment.

Ever close your eyes
Ever stop and listen
Ever feel alive
And you’ve nothing missing
You don’t need a reason
Let the day go on and on

Let the rain fall down
Everywhere around you
Give into it now
Let the day surround you
You don’t need a reason
Let the rain go on and on

What a day
What a day to take to
What a way
What a way
To make it through
What a day
What a day to take to
A wild child – Enya

I’m no wild child but I don’t need a reason to enjoy a bath or a day. Rest up and rejuvenate.

Categories
Chronic Disease Emotional Work Travel

Day 1841 and Lapping It Up

As we do our yearly family planning retreat (such as startup couple cliche) I’ve been balancing the stress of the wider chaos of the moment and my body’s turmoil.

It’s contrasted with the calm and removed relaxation of a hotel with excellent hospitality. The soft attention to detail is a blessing on a body that is not quite up to factory standards.

As we go over goals, budgets, allocations and timelines the stress is buffered by being able to take breaks to walk alongside the waterfront or swim laps in the quiet infinity pool.

That might not seem like a triumph, if you don’t know me it sounds like a stupid humble brag about my very fine life. But I’ve spent years unable to wear a bathing suit at all because of the pain cause by Lycra’s pressure on inflamed tendons and tissues. Three years ago I wrote about the bathing suit I’d never work

And today I was able to dive in and do the butterfly and the backstroke as if it were the kind of workout I do all the time. The possibility of improvement is here.

One of the planning goals is to see how far we can take my health with nutrition, sleep, physical therapy and other modalities that rely on movement and self healing over the many intense drugs I’ve needed to calm the flares. I almost believe it’s possible. And I sure plan to try.

Categories
Biohacking Media Medical

Day 1832 and Beaten With My Own Measuring Stick

It being the new year “the new thing” to talk about is “the new you!” As if you weren’t the same person as you were a few days ago. But you have this convenient convention that allows you to decide now is the time for change.

I used to call this time of year “eating disorder season” but GLP-1s have turned down the volume on that noise. We still have New Year’s resolutions and media just love having a topic tentpole to discuss new trends, habits, and opportunities.

We may not have as much of the fat chatter to contend with anymore (thankfully) but I do have reams of biometrics and plenty of concerns about my own health so the season of changing yourself remains even if the material conditions have improved. The app chatter is still in my head.

My Whoop continues to nudge me on the “aging” metrics and which ones are hurting my healthspan the most. I hide it for a peace of mind but on the latest update it is openly admitting that it’s given me goals that are impossible for me given my limitations.

It’s a relief to see the application get better but of course I’ve know the algorithm and my limitations don’t always mix. It’s been workable when I’m in Montana walking outside but it swings my numbers a lot when I’m in a small apartment in a polluted city. It’s a “short hallway” problem.

I move a lot inside (safer and less polluted) but it doesn’t those short bursts and turns as steps so I push to get more steps counted and it overwhelms my nervous system and immunocompromised state.

I am being beaten by my own measuring stick. I always suspected this was the case but at least now Whoop can talk back and tell me just how it nudges me into worry and concern. Which is a good lesson for all of us.

Categories
Biohacking Chronic Disease

Day 1830 and Itchy Twitchy Bitchy

It’s one of life’s truisms that we may wish for prestige, power and money, but none matter without your health.

The first wealth is health” by Ralph Waldo Emerson.”

I don’t think it is self flattering to admit I have got some amount of respect, influence and capital. And yet every spare dollar and moment I have I spend trying to improve my health.

The other types of wealth I have don’t matter if I’m in too much pain to think or I am so regularly infected that my resting heart rate is in the mid nineties.

Yesterday I started getting what I call itchy and twitchy. It’s often the first sign of an infection that has broken through an altered window of immunity.

My entire body will itchy. Sometimes it will be accompanied by a rash like eczema. If the rash is bad enough to be opened through itching I can easily get a bad infection. The discomfort of all that makes me twitchy from the anxiety of it all.

I suspect I am itchy twitchy at the moment as I am in a city with polluted air from major construction and high air mold counts from the winter rains. It makes me want to hit the road immediately for dryer climates but I’ll take prednisone first.

That should make me very pleasant. Anyone who has taken the steroid knows it’s a joke as the drug makes everyone who takes it feel a bit crazy. And you get fat and moon faced for added insult to injury. So apologies in advance if I’m going to be a bit bitchy.