Tag: Control

Categories
Chronic Disease Medical Politics

Day 1895 and If Not Us Then Who?

Despite persistent efforts to mitigate the downsides of my various medications, as well as maintaining dedicated wholistic lifestyle routines for my chronic diseases, I am not making adequate progress. I’d go so far as to say today it feels like I am sliding backwards.

But that is partially a function of luteal phase acute migraines and not the full picture on the ground. Yes, it’s true multiple metrics have gotten significantly worse over the 15-month span of my IL-17 inhibitor experiment with Bimselx and I am preparing to make the decision on what to do next. Many biometric markers are much better but the trade-offs are severe. It just feels like I can’t overcome them right now because I feel awful.

Nevertheless it’s important to remain grounded in the here and now. I think part of my trouble may be I am adjusting both to a new time zone and my normal altitude. Maybe I’m overly concerned by data points that will get smoothed out over time but it feels very spik.

Alas there is little room in life for downtime or bad days. Portfolio companies are fundraising, politics is getting uglier by the second, and one key blocker in my life has remained unsolved now for years.

I’ve never experienced a blocker quite so persistent as the American State Department’s handling of visa and immigration work. And yes that includes being disabled and chronically ill. That’s how bad state capacity is right now. My years-long attempt to get visas for family members to come help has not seen an iota of success.

But we keep going. There is much to be done, both practically and at higher levels of abstraction, and I am being whipsawed by hormone migraines over the last 48 hours. It is not an ideal time for weakness in one’s body.

Yesterday the best I could do in terms of writing was some rambling about my irritation with new retail sales cadences at Sephora feeling down market. Not that I necessarily need this space to be filled with decent content but I know that I am not running at even 10% capacity.

We all have to contribute our talents to this moment in time and there are projects that I wish to commit more time and energy to, even though it feels like it may be the death of me. But if not me then who? It’s a question we should all be asking ourselves and I hope more of us rise to the challenge.

Categories
Aesthetics Culture

Day 1881 and Attemplate

I’ve wandered far from the traditional life paths that might have recognizable to past generations of my kin.

It scares me. Any time I contemplate the change I have already experienced, I imagine how much more change I can expect to see.

How are we supposed to raise children, mentor young leaders or align artificial intelligence with the good, the true and the beautiful when we adult humans have experienced life so far from past ideals?

So I’ve been toying with a portmanteau blending attempt and template to express the idea of “an experimental framework” or “proto-template for living, learning, or skill-building.” I need templates to help me attempt to adapt while retaining my humanity.

We will all be re-skilling, re-learning, and re-engaging with our values and as I try to structure templates that help me walk a life and prototype styles that might work for myself and others.

I hoped to communicate both clarity and flexibility with the choice. We are building good ways of being in a world of rapid change. Templates must change and we must always be attempting to learn and adapt.

I liked that attemplate sounds like a natural word you felt like you may have already encountered. It does a nice job of mirroring the thoughtfulness of contemplate. A template for a new era which will be attempt to build, even if the foundations we thought were firm in the past give way to much broader ways of being.

I played with “attempate” which sounds procedural (almost bureaucratic) as if one would take a sheet of paper with an assigned attempate to fill out and live. Why yes, I took the project management attempate sheet to see if I had natural aptitude for detail work.

“Temptlate” sounded engineered. Maybe it would be suitable name for an internal tool or concept document. We will add that to the family Temptlate and see who bites on it for Saturday plans. It’s cute, playful and almost experimental, but not entirely as serious as the scaffolding one hopes to build upstairs n.

Maybe I’m the only one who feels like I lost decade between Trump Derangement Era through Pandemic Biden Gramsci End of March Institutional Capture.

What I thought was true slammed into things I wished were not. And then we fought years of anarcho-tyranny as the state refused to budge even if you attempted to follow its templates.

So here I am trying to find new ways of being for myself, for the future, and for my present. Maybe it’s entirely selfish. Templates for how to live are the anchors from which we used to build religion and power.

We’ve stripped much of the meat from life and turned past ideals into brands and merchandised them into outfits and starter packs. But it’s worth an attempt don’t you think?

Categories
Travel

Day 1870 and Cutting Down On Packing Time

I am a very thorough, well honed and time tested, and Karen hardened packing methodology.

I have a little bit of childhood anxiety around packing for having moved around a lot that has alas never left me. Many people having anxiety about flying so at least it is a bit relatable but I don’t know if packing anxiety is as common.

For me it’s not about being in the air but rather leaving behind an established base for parts unknown. Will I be able to find medicine for issue that arise or soap that won’t trigger eczema? What if I need to appear at an event requiring a dress & makeup? What if I need to walk for two miles with all those things?

Every time I pack I go through the same routine and I use the same bags with the same labeling system to manage all the permutations I might encounter. And it is a science.

I have a small pajama bag I carry in my backpack in case of an unexpected overnight or long delay. I carry small clear vanity case to clean & groom myself with full allergy protocols that passes even the crankiest Heathrow checkpoint. I am prepared.

I carry on my person a a small pill bag with every detail labeled that can handled medical incidents big and small along with my first responder certificate. If you have an issue on an airplane you want to be seated next to me.

From there in my carry on suitcase I label the packing cubes with every item I bring, from underwear to wrap dress and ballet flats. Everything that is packed in my larger Tumi that gets checked is also labeled and I place an itinerary on top as I find my bags opened more frequently than seems reasonable.

There are no questions from the TSA or the most belligerent customs agent that won’t be immediately cleared up with minor inspection. Now with artificial intelligence I can translate my labels on the fly into any language.

Despite this clarity and organization, I admit I’ve had a few amusing incidents. Once through Heathrow I unsettled a British Airways agent with my fiber and protein powder baggies. Because clearly middle aged woman would smuggle in a quart sized baggie of cocaine in her purse.

I really wish with all the travel I do and my very strict system that this would all somehow take a little bit less time than it does. I generally allow myself two days to pack as I like to check and double check as it’s an iron law that things will be forgotten. And Montana is remote enough that if I forget a fancy serum or a favored sweater I won’t get a replacement easily. We only just got a Sephora this year.

I am however headed for a large American city that has absolutely everything I could possibly want in short order. So as I leave behind a European home base where I do keep things on hand (I didn’t always but extended family has been kind to me) I feel much less pressure this time. And still somehow I will allow myself to let it take more time than I’d prefer.

Categories
Culture Travel

Day 1869 and Dumb Knuckleheads Driving Poorly

I’m surely not even the millionth person to make note of this phenomena, but drivers are getting worse and it’s very much the sorts of drivers you’d expect to be the culprits.

Let me tell you a humorous story about getting sideswiped not once but twice in less than week by ditzy women driving bottom of the barrel vehicles. Meanwhile I was in a decent sized higher end SUV which very much helped. Imagine the culprits driving a Golf or a Peugeot.

Now to preserve some privacy for all involved this did not happen in America but in Europe and the timing is being buffered. To protect the not at all innocent.

The first instance was (and I swear I’m not making this up) while I was helping a family member with the equivalent of a trip to the department of motor vehicles.

Turning into a parking space in their lot, a middle aged woman (who was not paying attention) backed out and scraped two feet down the right side of the vehicle. She stopped and gave the impression of us waiting to park. As soon as we settled she immediately scattered. So much for her stopping.

Fortunately a worker at the bureau saw it and knew that the driver was employed there which made sorting it feasible. She gave over her insurance and the paint easily buffed out the scratch. She didn’t act at all embarrassed for having clearly been caught.

Then forty eight hours later another near miss by a ditzy Zoomer got us. We were making a slow left turn to merge into a larger road. We’d already crossed the yellow line with just half the front of the car into the new lane. As one does when politely coming into a left turn.

Just as we began to accelerate into the lane having slowed traffic in then opposite lane, a cheap car continued barreling 20 over the speed limit without so much as an attempt to slow to let us finish the turn.

She clipped onto our bumper and tore into her own driver side door. It was not a pretty Boise. She attempted to keep going as every other witness on the city road tried to get her attention to stop her.

Finally some fifty feet later dhe slowed down once she realized she took damage and everyone was snapping pictures. We were able to call the police and exchange information.

In a final act of sneakiness, she tried to call a policeman that was in her family to plead her case. Him being nearby maybe she was thinking he’d help her out. Amusingly this backfired against her as it was pretty clear she was at fault and she accepted responsibility. She’d done more damage to her car than to ours.

It’s little wonder everyone is on edge about being on city roads as irresponsible drivers seem to be absolutely everywhere and rules of the road are mere suggestion. Don’t be a knucklehead is the moral of the story.

Categories
Internet Culture Preparedness

Day 1868 and Educating An An Entire Species or Start With Your Family

A viral essay was posted a few days ago by a Matt Schumer meant to help introduce the current state of artificial intelligence tools to people who do not work in technology.

It’s a very compelling piece of writing (or maybe it’s just reading), which I believe is well received by normal people especially older family members or technical skeptics. They are often the hardest to reach because of age and experience gaps and a smooth essay goes down well.

The author is the founder of HyperWrite. His company offers a suite of AI writing and research tools. So yes, his excellent writing and wide reach (over 40 million views so far) were achieved thanks his fluent use of AI for both writing and promotion.

The end result of using tools is an excellent essay distributed far and wide. Or if you prefer, the end product was a tool shaped object which gave people a sense of understanding. That’s valuable.

Don’t let his usage of AI in producing this writing and publishing stop you from taking his points seriously. In fact, it should encourage you to read it and consider if you want to share it.

You too will soon be competing in a world where regular people like Matt are capable of super human feats. Perhaps you’d like the same leverage for yourself and your family.

All of us can learn to work with the amplifying effects of networks and artificial intelligence algorithms with practice and usage. Allowing us global reach and potentially maximizing the potential of our insights and points of view. That should make us feel better about where we are headed and not worse.

I feel it is useful to share the essay with your skeptical family and friends who are either scared, confused, angry or indifferent about the rapid changes because it is the current reality we all live in.

I know it’s hard as a middle aged professional to learn new tricks. I’m in the middle of it too. But we have to educate all of us and it’s going to take some time. I’d rather we get started on it. And on that note my lunch break from Montana’s digital innovation committee is only an hour so I’ll get back to it.

Categories
Politics

Day 1867 and Rage Against What Exactly

I feel a struggle to continue this writing experiment. I feel a struggle to continue on at all in a public fashion online as the world is refolded and restructured around us.

I am just so tired and I fear an early death as the life and treasure of my generation is squandered on the perpetuation of systems that no longer work. I was texting with my mother about her husband’s third knee surgery (ain’t Medicare great) as enormous protest raged outside my window. I am in the capital of a European nation where this is quite common.

This is the third large demonstration in the space of three weeks for an opposition party that is mostly made up of technocratic stooges trying to hide the sins of wars no one remembers except those who deployed in them. I happen to know people who did deploy in them or I certainly wouldn’t know that the opposition is made up of the siblings, children and social circle of a former dictator.

Every time they protest the roads are blocked and then it gets out of hand. Water canons are set on the fires the protestors set and then tear gas is thrown out and no one can get through the city center. I assume this is some flavor of controlled opposition as America and the EU both support the existing government.

This time there were drones above the entire affair and much of the rally seemed to be music that was a mix of Catholic liturgy and electronic dance music. A famous priest DJ performed in the city over the weekend so maybe it was him. Who knows.

Nothing is weirder than hearing O Fortuna played over riot dispersal water cannons. We don’t have that kind of cinematic drama in American protests. Honestly everyone here seems sick of it. Most of all the hotel staff and the diplomats that live in it.

I watched it unfold from a vestibule with a Ukrainian woman who said she hoped I’d stay safe. I told her I wasn’t worried as I’ve seen this before.

She was understandably more concerned than I was being a refuge in a country that no one would have thought would be more stable than Ukraine a generation ago. Socialists holding off nationalists is not a terribly equilibrium if you can afford it. America can’t but it seems plenty of Europe still can.

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
Internet Culture Travel

Day 1860 and Some Technical Difficulties On The ISP Side Perhaps

I’m not anywhere particularly unusual (a European capital) but all of my end to end encryption applications, most crucially Signal and Twitter are not working.

Nothing will send and I’m not receiving messages now either. Why? Well, I’ve got conspiracy theories but I doubt it’s sinister and I’ll boot up a VPN in the meantime if it persists.

I am nearby several embassies (of the regions you might expect to be dicey including my own) and just uphill of city’s international school so maybe one of them is being a dick.

Or perhaps the Airbnb I am using has an ISP provider that is throttling end to end encryption for some reason. For what reason I couldn’t fathom but I am annoyed. YouTube is streaming in full glory on an enormous television but I can’t text in peace to my loved ones.

So this blog post will have to serve a test post to let folks know that I am fine and anyone who needs to know where I am does which is to be fair a pretty darn small list. I’ll move if the issue persists. I’m a mere 7 kilometers away from the center of the city where the internet was working fine earlier today so I’ve got no idea why I’m having issues now. If I’d known I’d have done my writing earlier. A part of me wonders and worries about what might eventually stop my writing experiment being a communication blackout. Though I never thought I’d have a problem in Europe. That is the stuff of authoritarians right?

I have got unpleasant notions about why a European city and its nearby embassies wouldn’t wish to let people communicate freely and privately on websites with end to end encryption. It’s just amusing they are happy to let me watch Netflix and Youtube. The New York Times has no problem getting through nor my other media applications on my phone.

Having been behind America’s first freedom to compute act, I suppose I’ll let my emotions run a bit wild here as a treat. It seems especially concerning that this sort of informational throttle by big European ISPs seems possible and even likely. That embassies might want to extend a little protection beyond their very high walls seems even more probable. Which is not very nice of them.

It makes my mind go straight to propaganda campaigns and not technical difficulties. In this day and age, we should never take for granted our right to express ourselves via compute freely and privately. Stay frosty and I hope this post makes it to you.

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.