Tag: Medical

Categories
Biohacking Chronic Disease Medical

Day 1650 and Trying to be Heard

I don’t think of myself as someone who struggles to be heard. I am loud, I speak up, I have a large social media platform and I don’t mind being impolite if I need to be heard.

And yet, the incidents where I am ignored, dismissed, or even outright insulted seem to be on the rise. I follow the rule of three assholes generally so I have to wonder if it’s me, but nothing makes you wonder more than getting really bad basic medical care.

I am attempting to get a cyst (or abscess or infected lymph node or whatever the heck it may be) diagnosed in a country where I don’t speak the language.

No one can agree what doctor is right. It was a gyno who sent me to a dermatologist who wanted me to go back to a gyno last month.

Now I’ve got a gynecologist who wants me to repeat the conservative management program I’ve been doing for months.

Which hasn’t worked, but she is implacable in her iron lady demeanor. Bactine and warm soaking. Maybe she does understand the immune suppression part? Thankfully I come with receipts.

I carry my patient charts, a synopsis of my diagnosis, the side effects of drug treatment and a short “why I am here and for what.”

A radical change in size & texture on a cyst with no response to antibiotics is exactly what the last four doctors told me to watch for as it signals a need for active management.

Now this shouldn’t need years of bloodwork (which I brought and charted for them) or a paragraph on high risk patient needs or a history of my main medical issues and the rationale for why I am requesting imaging. It’s an abscess that’s growing so figure out what kind, remove it and then we figured out why.

And yet it does require all of this to get anywhere. I spent 5 hours in a doctors office today and two hours in one yesterday.

I’ll waste another two days while they will run new bloods when I have a fresh set from a week ago. And still they fought me like hell on imaging.

Which is the only way to decide on the course of treatment. Instead I should do warm compresses and iodine for a month (sorry the first four months not count?) The temptation to unleash is overwhelming.

It was a fight. I got an ultrasound. And I did get a diagnosis and it needs to be carried out asap. Figuring out a doctor and a recovery plan I trust is going to be hard but that’s a tomorrow problem.

Abcess. Filled with bad shit. There is a hair in it acting the part of irksome pearl. 17×13 mm diameter. 3 mm from skin so it’s not small.
Categories
Biohacking Chronic Disease Medical

Day 1649 and Physician Heal Thyself

I’ve been having some side effects from my new biologic injection Bimzelx. Whenever I travel, I do a spate of doctors appointments before I leave so I can be adequately prepared for likely scenarios. Be prepared is my motto.

I had gone to a dermatologist a month ago to check on a cyst or swollen lymph node in an awkward spot. It’s on my pubic bikini area so I’ve been playing hot potato with dermatologists versus gynecologists.

The dermatologist appointment was so horrifying I’d recommend you stay away from Dr. Tara Oetken at SkincareMT as it was such a degrading and frankly useless experience. I do fully endorse their cosmetic practice and Nurse Addison.

I ended up at the dermatologist as the gynos were like “uhhh it’s on the outside and involves no reproductive organs so you need a dermatologist” and then dermatologist was a bit “its close to your vagina ewwww icky scary did you go to the gyno?”

Yes dear that’s how I got sent to you, this ain’t no picnic for me either.

I was embarrassed but the cyst/enflamed lymph node had been unchanging for a few months (not growing or differing in texture but malleable & squishy). So I checked in, was mostly embarrassed, got no direction that helped and left feeling degraded.

Given my previous issues with meiborn gland infections on my eyelids, I’d been instructed to keep a close eye any side effects common like folliculitis that is common Bimzelx. This was clearly a complex side effect that I’d had multiple issues with all year. The next step was imaging but I could get zero sense in the very short visit of whether or not the doctor felt it was warranted. “It’s up to you” sounds nice until you want a doctor to give you their professional advice.

Well now I’m in a foreign country and the almond sized squishy bit has ballooned in just four or five short days to thrice or quadruple its size, it’s now quite firm and not easy to move around or squish and I’ve got to do the same dance all over with doctors ago don’t speak English.

Thankfully I have artificial intelligence and an interpreter. I’ll get the imaging ultrasound done (AI says get it done immediately based on the differential it did) and then we can see if it’s a cyst or a lymph node that needs an I&D. I started antibiotics 3 days into this ballooning and it has done little to fix it so let’s find out. Hopefully I don’t need someone lancing and squeezing out stuff in a foreign country. But if I do need that I may pop a flight to Istanbul for that.

Categories
Biohacking Travel

Day 1645 and A Sleep of Prisoners

I’ve had several day’s worth of poor sleep. My sleep debt had reached a good full night’s of rest at over 9 hours. And boy did I make it up and then some last night.

A screenshot of my Whoop’s recovery page

I wasn’t asleep all of those 15 hours according to both Whoop and Apple but it sure felt like I was in deep slumber.

With earplugs and an eye mask in, I felt dead to the world. And what’s worse is I’ve had an entire month of pooor recovery and sleep

The 4th of July is now my independence from a month of poor biometrics

Now on July 4th I have been liberated from a long month of poor biometrics and awful recovery scores. And it only took 15 hours of being in a dark cold hotel room and a build up stress, exhaustion, mistreatment and other sundry social frustrations.

Mixing more strain than recovery into my Whoop cocktail for maximum life

Today really does feel like Independence Day for me. I’ve been freed from a body weighed down by physical realities and I am now free from it.

There is a poem that comes to mind anytime freedom and sleep arise to my conscience thought. A Sleep of Prisoners is a 1951 verse play by Christopher Fry

A SLEEP OF PRISONERS

Dark and cold we may be, but this

Is no winter now. The frozen misery

Of centuries breaks, cracks, begins to move;

The thunder is the thunder of the floes,

The thaw, the flood, the upstart Spring.

Thank God our time is now when wrong

Comes up to face us everywhere,

Never to leave us till we take

The longest stride of soul we ever took.

Affairs are now soul size.

The enterprise

Is exploration into God.

Where are you making for? It takes

So many thousand years to wake,

But will you wake for pity’s sake!

–Christopher Fry

His writing captures something in my imagination with turns of phrase like “the longest stride of soul we ever took” evoking a crossing to the harsh wakefulness of reality. And as he says “it takes so many years to wake, but will you wake for pity’s sake?”

I have been slumbering in both reality and in the metaphorical ties that bound me to others. And today is the day where all Americans ponder how our founding fathers contemplated the reality of waking to the dawn of a new experiment. The American experiment continues and we must remain awake to our role within it. I have many thoughts on this which may now soon flow having awoken from quite a sleep indeed.

Categories
Aesthetics Biohacking

Day 1636 and Bounce Your Boobies

Somewhere along the way I leaned into my hippie heritage and stopped wearing bras. Don’t fret, I didn’t burn them. Nor do I view it as any sort of political or fashion statement. It was the pain that did me in.

Sure, the pandemic’s homebound nature gave me the freedom to let loose. But it was the pain in my middle thoracic spine that sealed the deal. It’s at its worst right at my bra line.

I simply could not tolerate the pain from the pressure of even the most forgiving fabric bralette. No bra fitter in the world (not even the famed Orchard Corset of the lower east side) could get around the physics of an inflamed spinal and intercostal condition. My breasts would have go free.

I do have some sense of propriety about the situation. I lock the girls up firmly for business and conservative occasions, but even then if I can find a way to style myself such that I can hide the lack of brazier I do it.

It’s long been hippie lore that the pressure of the straps and clasps of lingerie prevent lymphatic drainage, which can lead to any number of problems. The most feared outcome was breast cancer. Though I do not have any family history of the disease, I did not care to increase my chances as my health waned.

And as I pack for a summer camp out in which I will be socializing with some very conservative people indeed, I found myself humming a crass tune from my maternal grandmother’s third husband’s family.

It was a 4th of July tradition in the raucous La Flair clan (a flavor of French Canadians who oddly settled on Long Island) to host a talent show. The well endowed Boomer women of the clan, who wonderfully possess no shame, had a chorus line dance they called “Bounce Your Boobies!”

I won’t be dressing or dancing in the manner of this fantastic clan but it’s quite likely my boobs will be doing a bit of bouncing for the rest of my life.

Categories
Medical Startups

Day 1630 and Change Change Change

I was hit hard by a week of poor health which meant I missed a policy gathering in Helena today which I was really excited to attend. One of the topics was autonomy and choice in medical care and health.

And with any unexpected change of plans I try to see the upside. Because I was bed resting I was able to catch up on a keynote speech by engineer and technical communicating savant Andrei Karpathy’s talk to YC’s Startup School.

He is an excellent public speaker and has a rare gift for clarity which benefits the entire software ecosystem. And we are an industry who disproportionately see the value of sharing in real time the changes we are seeing as we build. This generation built the networks and seeded the data with our content that enabled these models.

I saw in the talk the long lineage of technical cycles, access expansion and autonomy expanding that I have been a part of since my childhood. I’ve seen a few development and deployment cycles to use the theories of Carlotta Perez

Each cycle granted more power to sharing. The excess value generation of making our tools open to more external use has proven itself. And that has generally made for cycles of innovation that are shared mid deployment by the people as it happens.

And yet we still struggle with the right way of interacting with the tools. Math is fairly abstract. Your average human doesn’t much care for conditionals. We developed mathematics over such odd timeframes that it’s somehow easier to think it’s not in tandem with a culture and a commercial environment.

Maybe some only look at the industrial or military applications for tools and they care little about how they were made. The level of autonomy and control and abstraction that is enabled by software baffles. The more accessible something becomes the more we need to think of the user of the tool. Specialists can use special tooling and need not be so accessible. When it becomes a tool for masses things change. And we are in a changing moment for software as a tool just as the world has the highest expectations for them. Because we are perhaps at the edge of the great buildout.

Karpathy said that working with LLMs can feel like using the command line. It’s an intuitive framing for many programmers. He believes we have not yet found the graphical user interface for this era even as we are perhaps building new operating systems.

A screenshot from Karpathy’s YC Startup School 2025 talk

The GUI or graphical user interface was a mind blowing shift for the personal computing revolution. It allowed in a world of new users including you to use the benefits of computing. Which wasn’t just calculating missile trajectory. The commercial possibilities were as endless as the personal and aesthetic.

That change in access built enormous businesses and was the stuff of nasty backstabbing in the commercialization processes and the competition was very sharp in personal computing era. My father sold software through an old school reseller called Ingram and I gather it was a pretty wild time in the eighties.

But the fresh paradigm is always beyond reach. It’s there waiting to upend your entire world.

To quote Neal Stephenson “ in the beginning there was the command” essay

We were all off the Batch, and on the Command Line, interface now—my very first shift in operating system paradigms, if only I’d known it.

We are in an operating system shift now and we don’t know what to think about it it’s structure. It’s modeled on humans so it has all the same problems we have. It has cognitive deficits just as humans do. This annoys normies who don’t understand how it’s built.

We are interfacing with a new kind of compute output and it will slowly change everything around it as the abstraction layers bring more people into the effort.

We don’t really know what it looks like at this order of magnitude but the change is here and we get to make it. It frankly seems exhausting to ponder and a much much much harder problem set for power than generalized intelligence.

How does this relate to medicine and autonomy? Well, it’s become clear that medicine will be one of the areas that benefits from new access.

I care about the way we develop tools for the entire stack of medicine from pharmaceuticals to patient data. I don’t want another era of regulatory capture. The way we build applications affects how much autonomy and freedom we can give both doctors and patients. I know don’t want to be stuck with what we’ve got. More people should benefit from the changes ahead.

Categories
Biohacking Chronic Disease Medical

Day 1629 and IL-17 Changeover Results

I need to do a better job at tying up loose ends. I’ll bring up a change and then forget to do updates until I’ve concluded the experiment.

My January health reboot included changing my IL-17 biologic injection (moving from Cosentyx to Bimzlex) in the hopes of reducing my soaring inflammation markers has its last loading dose today. I take it for my psoriatic arthritis and ankylosing spondylitis.

I got a fresh round of bloodwork done last week and am pleased to have seen my CRP & my sed rate at the best point in some years. Subjective metrics like pain and energy are usually leading indicators for my erythrocyte sedimentation rate and C-reactive protein coming down. And that is my priority with pharmaceutical choices and holistic ones.

I have had a lot of negative side effects that were new to me that did show up during my Bimzelx transition. I got a meiborn gland infection on my eyelid twice. I had to get it sliced and lanced TWICE! And I took two rounds of antibiotics (which I love as I feel terrific when I’m on doxycycline or amoxicillin).

You’d think needing that down while in Istanbul would have been scary but no it was informative and fun. And I was able to learn more about hyperbaric chamber oxygen therapy which is the next big adventure coming up.

So it’s looking good for Bimzelx even though I’m not wild about how my immune system has reacted. The eyelid stuff is scary. I’ve had folliculitis in odd places so I’ll need more topic antibiotic washes presumably. My scalp has not taken it well.

Other oddities of note. Bimzelx also hurts way more than any other injection I’ve ever gotten in my entire life. I’ve done methotrexate, all the hormones for egg retrieval, multiple biologics (Coesyntx and Humira) and nothing comes close to this kind of pain. It’s a big vial and an auto-injector so you have no control so you must muster up the willpower to hurt yourself for 45 seconds of burning pain. Because you can’t restart you’ve got to do it. I scream. It’s bad.

It does appear to be working so we shall see how the change from loading dose to regular every two month maintenance dosing goes. I don’t know if I have multiple weird infections a year in me but I do like being able to exercise and have more work capacity. I’d say on balance it’s worth it for me.

Categories
Chronic Disease

Day 1627 and 12 Hours

I went to bed yesterday around 3:30 or so. Oops. I could barely write a post as I was struggling to stay awake at all. I did three short paragraphs and tagged it and said good enough.

A long night of poor sleep

My sleep was not peaceful or restorative but at least it was long. The night before I was up late (ok 10:30pm or so) and I struggled to fall asleep.

Alex’s birthday party on Saturday was enough to wipe me out so badly that on Sunday I couldn’t stay up past mid-afternoon. Pathetic yes but not surprising.

I recently did a big round of bloodwork and was thrilled to see my inflammation is down significantly but I have something called inflammatory anemia. So maybe a contributing factor to my exhaustion. There are a number of odd areas that need some attention especially in my endocrine system.

The Bimzelx switch is in its 4th month so almost through the loading dosing. I have had awful side effects but the code biomarkers of CRP and Erythrocyte Sedimentation Rate (ESR) are significantly improved.

I still have all kinds of weird pains and compensatory biomechanical problems but I’m feeling moderately optimistic. The next steps are around the corner. And hopefully I get more deep sleep and REM sleep before I tackle it.

Categories
Chronic Disease Community

Day 1626 and Sleep It Off

I am coming off multiple days of in-person interactions. It has been nice to go from Costco to committees to backyard bbq.

I am tired. I intend to rest and alas because I am doing things in the moment I have had too few moments for even a brief rest. It has been a good time.

My HRV and my RHR are way down and way up respectively. I need that to reverse so I’ll sleep it off.

Categories
Biohacking Chronic Disease

Day 1625 and Hot and Cold

I am older than my husband but only by enough (a year and change) to let me land middle aged jokes. We celebrated his birthday at Costco. We are spending Saturday grilling. We own a Subaru. I think the jig is up.

I’ve been fighting to restore my body to “factory settings” since we made the mistake of messing around with fertility treatment hormones. Sadly why our middle aged jokes don’t involve children. Our civic contributions and investments in founders tie us to our future for now

And in our ambitions to be prepared for giving that future everything we’ve got, we are doing more and more for our health.

I started an earlier as my body gave out earlier but we are both doing more biohacking. We are slowly building out a collection of treatments and devices that we hope will end as a medical spa serving our region.

The hyperbaric chamber for oxygen therapy we purchased in January l has finally reached American shores. More sauna and ice cycling might be in our future too. On a “in the red” day I’ve been known to hit my recovery with everything I’ve got. Heat, cold, and pressure can fix almost anything. Add in oxygen and we might just survive whatever the future throws at us.

Categories
Biohacking Chronic Disease

Day 1622 and Pulsed Electromagnetic Field

On a bit of a whim, Alex bought “on the go” PEMF Infrared Mat from HigherDOSE.

This is the year of acquiring mechanical intervention medical equipment for us.

Yes as biohackers we trial a lot and some of it is less woo-woo than others. Treatments like hyperbaric chamber oxygen therapy have significantly more clinical data than say pulsed electromagnetic field treatments.

It seems easier to send electromagnetic waves at different frequencies than create a sealed oxygen chamber but consumer is weird and the military and elite athletics tested HBOT whereas mere hippies played around with PEMF.

A temperature setting swaps for 4 separate vibration settings Delta Waves, Theta Waves (Schaumann Reponse, Alpha and Beta Waves

So it’s qualia only here on the good vibrations but I am excited to try it out. I can’t exactly feel the vibrations unlike in other clinical settings where I’ve experienced much more intense (it’s measured in gauss or Tesla) but infrared warmth is a nice experience even if the vibrations don’t do much. But I will report on it.