Tag: Pain

Categories
Emotional Work

Day 1538 and Reason About the World

There is a pet theory that I ascribe to that precious few changes their minds without experiencing a failure in social consensus. Being pushed outside of culture lets you map it more accurately on the way back in.

There is nothing more valuable than your ability to reason about the world. We sense-make with all kinds of inconsistencies and have so little incentive to step out of what we think is true about our world. Go along to get along is how humans stay alive.

I have had a wildly inaccurate model of the world in the past and I’m confident I’ll say that same soon in the future.

But I’m comfortable falling out of social consensus if it clashes with the model of the world that I work within. I’m not saying I’m smarter than anyone but I do know that I regularly weigh my faulty priors even if it’s embarrassing. I’ll keep searching for people who can reason about the world. We can see better together.

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Medical

Day 1531 and Dumb Novel Problems

I personally find I’ve got an adequate number of problems in my life. I’d rather not go searching for new ones. And yet they keep cropping up no matter one’s hopes.

I’m at the eye clinic at the hospital for a two week checkup on an infection that felt like it literally ballooned my right eyelid. It was either a cyst or a chalazion, the doctor was like eh treatment is the same.

Not to upset those with weak stomachs but the treat is slice open your eyelid and squeeze out the pus, blood and scar tissue. It isn’t as painful as it sounds.

After two weeks of diligent hot washcloths, antibiotic eye drops and doxycycline my eye has reduce the lump to a small pea or large lentil. My body was trying to move it out but it needed a bit more help.

So she sliced it open again seeing if we could get anything else out. Alas the tissue scaring was most of the volume so there was less ooze to be pushed out.

She said I could wait it out but it takes months to move it naturally or we can do a steroid injection and reduce the swelling so it clears more easily.

I’m not a big fan of prednisone when I’m taking it internally but a little localized dexamethasone shot into the eyelid seemed like a good plan to me.

I’ll say that it’s a bit scary trying to stay perfectly still while someone holds a scalpel to your eyelid. Having someone inject a needful of steroids is much worse from a base animal terror perspective for me.

I’m safely through it though now my eye is all puffy again. I’m likely to have a black eye for a bit so I’m excited for all the jokes Alex and I will make about how he hit me. Nothing more awkward than a wife with a black eye.

Categories
Emotional Work

Day 1530 and Pandemic Anniversary

March 11 2020 was the day the World Health Organization declared Covid-19 to be a pandemic. It’s been five years since we had our once in a century pandemic that changed everything. Honestly it feels like it just happened.

You can quibble a bit on the start (right there in the name alluding to its discovery in 2019) but this second of March the week where America finally started changing behaviors. Within two weeks we’d have the infamous “flatten the curve” discussion. What a shitshow those early days were.

The pandemic changed a lot of people’s lives. The New York Times has a feature with 30 charts about how the world is different that I found interesting.

My life changed in a lot of ways that are probably recognizable to other Americans. My already digital life became how business was done. I moved back home. I rethought my relationship with institutional trust.

We lived in New York when we were locked down. Alex and I didn’t leave our one bedroom apartment for three months except to go to the CVS.

Coincidentally we’d been in the middle of our landlord trying to evict us for filing a complaint with the department of buildings over broken elevators. That got stopped. As soon as it seemed safe to leave city we rented an Airbnb in the Hudson Valley. The next week protests broke out. We had lived above City Hall so we got very lucky.

Figuring out where to land and the shape of our lives was a process. The Airbnb phase felt stressful as the summer ended and the urge for permanency felt overwhelming. We signed a lease site unseen for a townhouse in my hometown of Boulder Colorado.

Much of the rest of these past five years have been subsequently documented here on this blog. We found our way to Montana. A lot happened in those intervening years. None of it felt like it happened very fast. And yet here we are.

Categories
Medical

Day 1524 and in the Red

The MilFred family household is not at its finest. My husband Alex seems to be in the throes of pneumonia while my body is doing its best to manage a host of medication changes.

We have all the typical work while this goes on along with a few other crisis management projects (mold). All dashboards flashing red.

I keep toying with posts saying I’ll have to consider if this is where the habit goes away or that I need some do not disturb time. This is certainly a big part of why.

Categories
Medical

Day 1517 and Blink Blink

I’m writing this in the waiting room of the new hospital campus in Bozeman. We’ve recently had an outpost of the Billings Clinic go up alongside the highway between Bozeman and Belgrade to keep up with the growth in Southwest Montana.

It’s really nice and absolutely packed with people. The average age looks to be early seventies so it’s not a young crowd in the eye clinic.

The only other mid-life people besides Alex and myself is a prison inmate in a yellow jumpsuit and his two Corrections officers. I had half a mind to go ask him what he was in for while showing off my own deformity m.

I’m unsure if it’s a side effect of changing medication or just plain bad luck, but I have an infection in my right eyelid. It started about a month ago and looked like it was a simple chalazion.

It’s sometimes called an eyelid cyst or a meibomian cyst. It slowly forms when an oil gland (called a meibomian gland) becomes blocked. Cleveland Clinic

But over the last month it went from painless little boba ball sized lump to my entire eyelid being swollen. It got much worse this week especially as I started applying wet washcloths to it regularly.

They were able to perform an incision and curettage (don’t click through if you don’t want to see some gnarly eye stuff) as my discomfort was pretty intense. I desperately wanted it drained and they did not disappoint.

Just wiping up the last of the pus

I hope this heals well and without issues. I fear this was complicated by the changes I’m meant to undergo in my medical protocol from one IL-17 inhibitor to another.

To soften any backlash in symptoms during the change I’m on another immunosuppressant so I’m particularly nervous about infections especially when it comes to sensitive areas like the eyes. I’m glad I was able to get this drained but I’m a bit nervous about how it will heal.

Categories
Biohacking Chronic Disease

Day 1491 and Snappy

I am a bit snappy at the moment. Everything hurts and too much is happening. Despite my endless horizon of opportunity my circumstances tightens to the pinprick focal point of pain.

Once you get angry enough that you quote Kierkegaard in public settings it’s probably a sign to knock it off.

I don’t have much of utility to say here except any problem that comes down to information acquisition is an excellent opportunity to make use of new tools so both myself and my husband have been deep in model comparison of different reasoning chains as we try to untangle IL-17 inhibitors vs 23.

It’s a weird feeling to be watching the crisis of institutional confidence in medicine play out over the most incredible extension of knowledge and capacity in my lifetime. PubMed spelunking? Pffft nah we got Sherlock Holmes mode for free.

Categories
Chronic Disease Politics

Day 1490 and Healthcare’s Sin Eaters

I went to see a rheumatologist today. I had the baffling experience of them wanting to actually get to know me. Which was surprisingly unhelpful in the moment but really nails vibe we’ve got with healthcare in America.

I kvetched on Twitter that I spent my week defending hot girls and open source software while I deride Big Pharma and public employee unions. That’s more of a humble brag about my priorities. But I felt bad that I picked on pharmaceuticals. I got replies. Why harsh on pharmaceuticals? And actually fair.

Drug companies are the least bad of some very bad actors. For all its faults, drug companies are not just existing to be parasitic like pharmacy benefit managers or generate wealth through regulatory capture like Epic.

If anything pharma is the sad scapegoat in healthcare. We pick one drug a decade to laud & then like clockwork do a hard reversal on it in a decade or two. Patients get hurt and doctors did their best. We saw with statins, SSRIs, opioids, adderall, and I’m sure soon GLP-1s will be next to have Netflix documentaries. Someone is always to blame and it’s usually the drug companies.

Some category is designated a sin eater for the system’s horrors. Which isn’t at all fair as all those drugs serve real needs. Sorry Oxycodone you remain a villain. But why is American in so much pain?

Which gets back to my surprise as having a doctor who wanted to get to know me. We came in with a typed up diagnostics sheet with a timeline of treatments, protocols and medications and the bastard has the audacity to ask me about the quality of my life.

I hesitate to say “well shit” because I am Protestant from Scandinavians stock because we pride ourselves on being “oh just fine”

And of course I’m the asshole who quotes Kierkegaard at my doctor. Sickness unto death right Doctor? Which I guess is a bit of a downer.

The man actually asked me if I’d consider managing my pain more aggressively. I am absolutely mogged by the audacity of the sentiment that I could suffer less.

Apparently no one scans you for drug seeking behavior when you chuckle and kneel before what God has decided for you. So that’s a good trick I guess for the less sincere.

You can really see how public perception of RFK Jr is so different from what elite narratives would like to see. People are with RFK’s righteous indignation. Why are so many suffering?

The cranks and the crazies are here because America is mostly gaslit by a nest of bad incentives. Doctors don’t want any of this. Neither do the drug companies. But someone has to be blamed and it’s usually the guys with the money. But they are trying as hard as anyone to actually come up with solutions.

Maybe no one deserves to have a righteous Kennedy come after them. But everyone feels a little bit crazy with how the system works now.

Categories
Aesthetics Internet Culture Preparedness

Day 1483 and If You Die In The Matrix

Twitter has become an unmonitored Wild West of content. This is mostly good for those of us looking to understand the world “as it is” and not as we wish it to be, but requires a certain cognitive security not everyone is prepared to engage in. What was once kept to the dark corners of 4Chan splutters up.

We witness more violence than we did during its “trust and safety” years. Thanks to algorithmic chaos quite a bit of gore, pornography and death will regularly hit main feeds.

A friend of mine (whose line of work would put her in a position to know) has a theory that Zoomers will cross into physical world violence more easily than past generations. We have long debated as to why and how it will manifest but it’s already begun.

Being raised in digital always- online mobile environments means their reality is more malleable. And yes the internet is real life. We live, we love, we hate, we play and we work online. But what of violence? Are we prepared for that crossover?

Digital life has given them an immense sense of freedom to act without consequences because the virtual world is still sequestered from some consequences. And unlike millennials, whose sense of The Real and the Matrix, was anchored by a physical consensus reality, I’m not convinced this will be true for all Zoomers.

If you die in the Matrix you die in real life

We have already seen the maturation of bringing Internet identities to our regular life physical world. Violence has always been there lurking, but it is now bursting forth and I believe it will only become more prevalent.

Today I read news stories of two separate incidents of violence that I can only read as Zoomer Internet Identity Violence. Be warned they are both upsetting and confusing for non-internet natives.

A German math Olympiad transwoman on an H1B visa was killed in a shootout with a border patrol agent in Vermont. A shooting in Nashville involved a full Google document FAQ on a flavor of soyjack I didn’t even know existed and will not type here.

If you die in the real world perhaps you live on in the Matrix of the infinite internet. But this is not an end that we should wish for our civilization or for our Zoomers. Be prepared to see more of this.

Categories
Biohacking Chronic Disease

Day 1475 and Equalizing Pressure

I scared someone really badly today. As I was being locked into the hard shell for my eighth hyperbaric chamber oxygen therapy session, I realized I had forgotten my chewing gum.

At 2 atmospheres of pressure it can be a real challenge to keep your ears from getting painfully congested. Even with yawning and blowing oxygen out your nose, it’s like going into an airplane with a sinus trouble. It’s uncomfortable but it can also be dangerous.

Careful. Equalize the pressure in your ears. If you feel your ears stuffy, equalize the pressure in the following ways. 1. Yawn 2. Swallow saliva. 3. Close mouth, pinch the nose, out of breath, blow the nose (all spelling mistakes theirs)

I got a little panicked as I was trying to stop the clinic technician from finishing the sealing process as I wasn’t sure if they could stop it once it was sealed or if I would need a full decompression cycle.

I was texting frantically “I forgot my gum can this be stopped ASAP so I can get it?”

I was tapping the window on the hardshell with a worried look and showing the text. I kept trying to make the font bigger and be clearer. FORGOT GUM OPEN?!

But it was confusing enough that everyone in the room thought something was seriously wrong. Which it would have been without the gum as I can’t do a full hour at 2 atmosphere without the help of the chewing. All the yawning, blowing out through the nose and other techniques aren’t quite enough.

It wasn’t yet an emergency. If it was I would have hit the big red button. But everyone seemed to think it was. After 2-3 minutes of frantic miscommunication it turned out that it was fine to open it up but we’d need to restart the seal and pressurize it again. I got the gum. And look who was on the TV screen.

Just don’t die while inside the chamber

Categories
Biohacking Chronic Disease

Day 1471 and Lemons into Lemonade

I was so disappointed yesterday as I read over my most recent set of bloodwork and found my autoimmune biomarkers headed in the wrong direction.

I’ve been well controlled though my disease is not “inactive” or in remission. I manage it as it’s worth it to me to have a quality of life that includes working in technology as I want to be a part of making the tools that enable material progress in health.

Seeing things go in the wrong direction when my life is going in the right direction had a clarifying effect on me.

Not that I’ve been unaware that I must work at my health but rather it’s hard to always be working at health as it’s a matter of survival. But when you see a change in the data you act. I got serious and immediately went into action.

I’m so lucky to have to have access to an incredible community of biohackers. That I can ask someone who is studiously pursuing health in public is the best of the internet. I get the benefit of Bryan Johnson’s open sourcing his work. I’m doing an experiment with HBOT or hyperbaric chamber oxygen therapy and I learned from him I need it to be 2 atmospheres to be effective. This helps me plan and find hard chambers.

I can use Perplexity and Claude and even make my own personal assistant trained on my condition and my data is the remarkable thing.

I’ve found a new IL-17 inhibitor that looks to have twice the efficacy of my current one at the same dose. It was only approved in Europe but finally came on the American market. I was able to discuss it with my doctor immediately after going down a short question sequence on perplexity. You have so much power to improve your life now.

Shopping

I’d like to improve my V02 max and cardiovascular health in a way that works around my psoriatic arthritis and ankylosis. I have significant fatigue from the pain and obviously high impact isn’t in the cards for me. But I can try something like a DeskCycke. It’s even possible for me to do HIIT training with one. So I bought one. My goal is to improve my V02 by 10% in 8-12 months which shouldn’t be hard as mine is absolutely awful