Tag: Pain

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

Categories
Biohacking Chronic Disease Medical

Day 1470 and Disappointing Biomarkers

After my anaphylactic adventures over New Year’s, I decided it was time for a fresh round of bloodwork to see just how my inflammatory responses were doing.

I got them back and it shows exactly what you’d imagine from a patient with an active autoimmune condition. My sed rate, or erythrocyte sedimentation rate (ESR) made a significant jump from last measurement.

I’d been on the high end of normal for almost two years and this set returned with doubling of the previous number. This biomarker is used in conjunction with C-reactive protein (CRP) test to determine overall inflammatory responses. That test came back modestly elevated but not atrocious. I also have elevated IgA levels, also known hypergammaglobulimia so that’s a bummer.

It would seem that my relatively well controlled autoimmune disorders (psoriatic arthritis and ankylosis) are moving to an active phase.

Given my use of IL-17 inhibitor injections along with a pain management protocol, lifestyle and nutrition management and a focus on holistic interventions, these results are obviously quite disappointing to me.

It would seem 2024 was harder on me than I’d have preferred and 2025 will be a year of doubling down on holistic therapeutics. Red light, infrared sauna, cryotherapy, hyperbaric chambers oxygenation, and any other anti-inflammatory treatment I can throw at it. Not that I’m looking forward to trying get another round of elimination diets but needs must.

I’ve not changed my the cornerstone therapy secukinumab since the pandemic, so it may be time to see other options like Janus Kinase (JAK) Inhibitors.

I’ve tried Tumor Necrosis Factor (TNF) Inhibitors as well as methotrexate (otherwise known as chemotherapy) and none of those treatments (Humira, Embrel) helped much and dosing on and off of biological injections is a long process. It can take up to six months to see results and changing a treatment that has been working comes with significant risks.

I’m lucky that even with these biomarkers I am still functional. I am able to work semi-normal hours and am able to groom and exercise. I have no personal life to speak of nor do I have hobbies beyond my work (unless reading counts) so I’m lucky to love my family and work enough to have it provide enough meaning to keep going.

Much of my success in treating this chronic complex case has been made easier with the breakthroughs in artificial intelligence.

Even as my physicians have retired and my care team rotates, I am able to progress and learn more thanks to large language models and search tools like Perplexity. I’m confident I will find a way to get back to remission quickly with little disruption.

Nothing provides me as much motivation to work as disease. I see how I and other patients like me suffer and I double down.

The progress we’ve made on autoimmune conditions in the wake of Covid and the rapid progression of protein discoveries as more AI tooling comes online. A chaotic world with a chaotic body drives my investing. We can do better as I see so much progress.

Categories
Internet Culture

Day 1463 and Nuke It From Orbit

Seems like everyone I talk with is extremely sick. We’ve got norovirus ripping through a bunch of populations in America and Europe. Lots of reports of flus and Covid variants taking folks with respiratory cases in my professional and personal life. And of course everyone is worried about the H5N1 the bird flu variant.

I myself am having some autoimmune flares that I’m resorting to treating with steroids which is extremely frustrating. I fear the power of immune system rebooting drugs like prednisone.

Steroids are the “nuke it from orbit” option when your system is too reactive. I try to dose it down as soon as symptoms clear but blowback sometimes means you can’t titrate off them without symptoms returning. I rarely do more than 5mg a few days in a row.l but even then I worry about its usage. Being covered in hives and unable to think from an autoimmune response is probably worse though. Minimum viable dose in all things.

Reading

The SEC Wrote Off 10B in Fines it Can’t Collect

The News is So Awful 40% of WaPo Coverage Triggers Advertising Safety Blocks

Maybe Skip Breakfast?

The WSJ shows some terrifying price trends in the most important meal of the day

People To Follow

Andy and Keturah Hickman are some of the most interesting people I know. And you can be pen pals with them.

Stuff to Buy

I’ve never quite managed to keep up regular usage of a red light mask (needed antibiotics a few times since I purchased one and they make you photosensitive) but Beautypie has the same OEM as much more expensive versions if you are in the market. Affiliate link for $20 off.