Tag: Health

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Medical

Day 985 and Know So Little

Every time I have have cause to interact with any medical speciality I find myself blown away by just how little we know.

I’ve been going back to doctors to understand what my options are for living with an autoimmune condition and having children. And the truth is we just don’t know much.

I made a life altering decision several years ago by letting a medical decision be framed to me like a consumer product. We opted to freeze eggs and embryos and it turned our entire lives inside out. It triggered an autoimmune response in me that I’ll live with forever.

Somehow in the intervening half decade years we’ve learned precious little about women’s health and fertility. And we are advocating for somehow knowing even less.

Because that’s what we’ve done by letting the government into our health decisions. Don’t kid yourself into thinking when we involve government and bureaucrats we somehow improve our knowledge and safety. At it’s most friendly, when the government shows up it’s about ass covering. At it’s most hostile it’s about control.

We argue about ethics, safety and life as if we even have a shared ideal of any of those concepts. Whose life? My life? My unknown children? I’m not convinced we ever cared about women’s health as an independent variable. We treat fertility as a sideshow and hormones as some variable over which we pretend to have control. And yet every time I try to assess my own risks I find out that we known just about nothing. There are no good answers. And it’s all poorly understood risks.

Categories
Medical

Day 983 and Down For The Count

I have been felled by a migraine today. I’ve been unable to tolerate light, noise or food for a little under twenty four hours. Probably one of the worst migraines I’ve ever had but my suspicion is that it’s tied into a few other issues.

My husband was struggling with some type of infection. It never popped at Covid on tests but given the prevalence of various forms of colds, flus and other illnesses popping up in the back to the arena phase of fall I wouldn’t be surprised if we were both fighting something off.

I am hoping that staying in bed and drinking gallons of water and electrolytes will pay off tomorrow. The intensity of the pain has been unpleasant. Add in nausea and I’m mostly staying still and praying for relief. I’ll catch you all tomorrow.

Categories
Medical

Day 982 and Not Small Men

I’ve been working on getting a deeper understanding of my hormone profile and where I can better support my cycle.

I’ve been surprised by just how little we seem to know about women’s health and the baselines that are considered ideal. Between the battles over health education in school (abstinence only) and the eagerness with which we put my millennial generation on birth control as teenagers, we’ve got both an under-informed and potentially over medicated population. Which wasn’t the case for our mother’s generation who went on birth control much later in life if at all.

A tweet from last week

I’ve had my fair share of fucked up fertility experiences and yet I’ve only just in the last few years learned to understand how my follicular phase impacts me so differently from my luteal phase. If you don’t know what that means either well it’s probably time.

The phases a woman’s cycle

I generally feel most energetic, pain free, and happy during my follicular phase. Despite knowing this I couldn’t tell you what an ideal FSH hormone level would be. I don’t know what balance of estrogen I should have at any given phase. I have no clue what my LH should be during my luteal stage either.

It strikes me that these levels should be taught along with implications for what it means and how to work with them just as we know our ideal blood pressure rage and resting heart rates. It’s some of the most crucial and basic self knowledge about our bodies.

When I think of how many other crucial biometrics I’ve got memorized (I track my SED rate and CRP quarterly for inflammation) it seems odd that something so crucial as one’s hormones wouldn’t be known, tracked and improved. I watch my heart rate variability like my recovery depends on it because it does. So do most serious biohackers.

Knowing more about own health is part of being a responsible adult. And I’m sad that we do so little to educate women on basic rhythms. I can’t tell if it’s a lack of interest from women or a dismissal from the medical profession. Women aren’t just small men.

Categories
Biohacking Medical

Day 974 and Flare

As most casual observers of this daily log have probably noticed, one of my main interests is biohacking. It was a hobby in the time of my life I mislabel as “before chronic illness.” It’s not accurate so much as recency bias. I’ve been into biohacking my whole life because I’ve had to manage an unruly body.

I had the best health of my life between 24 and 34. I am rounding the end of my 39th year as I write today. I didn’t think of myself as being chronically ill for that decade.

Probably why I think of my life as having a “before” illness is more that I’ve been in the worst flare of my life for the last five years. It came crashing down with a one two punch of being a startup founder & getting pumped full of hormones for fertility treatments at 33. I was on bedrest and chemotherapy drugs by the time I was 34.

So I have to remind myself there is no time before chronic illness. There was remission. I had long years of robust health interspersed with autoimmune diseases that flared and were contained.

Diagnosis has been a lifelong battle which started with inflammatory skin conditions and horrendous allergies and ended up with the inflammation going inside my spine and joints. Ankylosing spondylitis and psoriatic arthritis is what codes with insurance.

Looking at my health records, I had my first issues at 7 when I entered school, then after puberty as teenager around 15 & 16. I had to drop out of high school and ran a giant let of standardized tests to claw myself to university.

I was hale for college and my first startup but flared so badly after the acquisition of my first company I was put on an experimental immune reboot protocol. Ask me about being put on cyclosporin without an organ transplant.

My most recent, worst and longest flare was in the five year battle after doing IVF and egg freezing in my early thirties. I’ve only really felt like I was able to work my preferred hours this past year. So perhaps that flare is finished. I don’t want to tempt it. Though I yearn to live harder & faster and bigger.

Writing it all out in a timeline makes it seem like the pattern is introducing change and stress into my routines but also there are two big incidents involving hormones. Being put on birth control as a teenager and then whatever the opposite of birth control might be with IVF. Maybe no more synthetic hormone control for me.

Managing your health isn’t easy for anyone. It’s particularly challenging for me. And if the current post pandemic climate is any indication a lot more people are grappling with poorer health. I wish I could offer more help other than saying it’s not easy but flares can be contained. Sometimes with a lot of pharmaceutical intervention. Sometimes with better habits. Sometimes with time. And sometimes it’s just a crap shoot.

Categories
Biohacking Medical Startups

Day 971 and Patients Rights With Artificial Intelligence

If you are working in artificial intelligence or medicine I’d like to pleased my case to you. Id just like to pass along a note.

The current “responsible” safety stance is that we should not have AI agents dispense healthcare advice as if they had the knowledge of a doctor. I think this is safetyism and rob’s sick people of their own agency

I have very complicated healthcare needs and have experienced the range of how human doctors fail. The failure case is almost always in the presumption that you will fall within a median result.

Now for most people this is obviously true. They are more likely to be the average case. And we should all be concerned that people without basic numerate skills may misinterpret a risk. Whether it’s our collective responsibility to set limits to project regular people is not a solved problem.

But for the complex informed patient knows they are not average? The real outliers. Giving them access to more granular data let’s them accelerate their own care.

It’s a persistent issue of paternalism in medicine to assume the doctor knows best and the presumption that the patient is either stupid, lying, or hysterical is the norm. It’s also somewhat gendered in my experience.

I now regularly work with my doctors using an LLM precisely so we can avoid these failure cases where I am treated as an average statistic in a guessing game. I’m a patient not a customer after all. I decided my best interest.

A strict regulatory framework constricts access without solving any of the wider issues of access to care for those outside of norms. Artificial intelligence has the capacity to save lives and improve quality of life for countless difficult patients. It’s a social good and probably a financial one too.

Categories
Homesteading

Day 969 and Hot Chicks

I know it’s a little bit odd to be getting chickens in August, but as of today our homestead is now home to eight egg laying hens.

Our new hens (in their well fortified chicken run) settling in at our hone.

Some of our friends are moving and needed a local home for their laying hens. Another one of our friends was giving up their old chicken coop so we figured it was a sign from the universe that it was time for us to become chicken people.

Unboxing chickens

My husband has spent the last two weekends repainting the coop, installing predator fencing, and otherwise preparing for the arrival of the chickens. Having not done the work of raising them up ourselves the pressure is on to make sure they are well protected.

A little red henhouse

You can’t just take on a friend’s chickens without feeling just a bit more responsibility than you otherwise would had you raised them up from chicks ourselves. We can’t let a literal fox into the henhouse.

This is alas real possibility as a red fox roams our pastures. We’ve got a very tasty infestation of prairie dogs that are suitably stupid enough for an even moderately clever fox. Hopefully the 18 inch predator apron is suitably troublesome to keep our all but the most enterprising. We’d rather the prairie dogs remain the easy snack and our hens too much effort.

The funniest bit of all of this is that I am slightly intolerant to eggs. I can manage eggs in a baked good I find omelettes, quiches and even mayonnaise to a quick path to nausea. Even the smell of eggs being scrambled makes me a bit sick to my stomach.

But I’ve got a fantasy that industrial eggs are the problem and I could come to tolerate eggs from chickens living the good life roaming around our lovely Montana land. And if not we will give them to our neighbors. If we can find one that doesn’t have their own chickens.

Categories
Politics

Day 968 and Precautionary

Do you recall learning Hippocratic Oath at some point in your schooling?

First do no harm

That turns out to not even be in the original oath but one of the many varied additions over the ages. The more often repeated phrase is translated as follows. “I will abstain from all intentional wrong-doing and harm.”

The document dictated standards like keeping professions secrets and avoiding using poisons knowingly for suicide or abortions. But somehow in popular imagination “do no harm” has really stuck.

Now we are stuck with the precautionary principle as it’s heir. The principle suggests there is a social responsibility to protect “the public” from harm when there may be a plausible risk even in theory. Big ups to Hans Jonas’s imperatives on responsibility for giving us the ethical frameworks for technological skepticism.

We apply the precautionary principle in many fields from medicine to the military. It suggests precautionary protections should be relaxed only if there is evidence that no harm will result. It’s for your own good!” It’s included as a statutory in some areas of law. Progress can’t be too fast lest someone get hurt

But before you give too much credit caution, it’s important realize the cost of inaction can be high.

As Mercatus Center’s Adam Thierer put it, “Where there is uncertainty about future risks, the precautionary principle defaults to play‐it‐safe mode by disallowing trial‐and‐error progress, or at least making it far more difficult.”

The inclination to play things safe can have incredibly high costs for people who need progress. Much the current debate around artificial intelligence is centered on doomsday scenarios. Safety and alignment researchers bring up terrifying scenarios as justification for taking things slow.

But we shouldn’t be too quick to dismiss what AI can do to make life better. You want to tell someone with a painful chronic illness it’s better to wait on medical progress because of some theoretical harm? They already live with an all too real harm that we should be just as eager to to fix with powerful new tools like AI.

Fuck Safetyism

I’d rather we adopt a more ambitious attitude towards problem solving. Fuck your safetyism.

We need to put a complete moratorium on the precautionary principle until we’re sure that it doesn’t have any negative consequences

Categories
Biohacking Emotional Work

Day 965 and Bounce Back

I had a really shitty day yesterday. I was attuned to the haunted corners in myself and others. I was in an astonishing amount of pain. I got into a fight with a family member over a misunderstanding.

I found myself in a state of reactivity. It’s a huge challenge to manage nervous system regulation for me when I tip from the pain scale from my typical 4-5 to the impossible ignore 7-8 range.

I have become quite used to living with pain that would be distracting for others. I monitor biometrics like my heart rate variability to keep track of how stressed my body is from the pain.

I’ve found it important to learn how to bounce back from unexpected pain. It’s important to stop stress and reactivity in its tracks. If you let stress hijack your nervous system you can do yourself a lot of damage.

I took care of myself last night. I did what I needed to get my nervous system under control and the pain manageable. And it worked.

I turned myself around today. I lifted weights, I meditated, I took my supplements, and I tackled my work load with pleasure. I can feel the fatigue sweeping back in as the day winds up. But I can rest easy knowing I set myself up to bounce back again tomorrow. Budget for the body you have and not the fantasy one which you don’t have.

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Culture Emotional Work

Day 964 and Haunted America

I’ve been getting the sense that more and more of my social circle is uneasy about our cultural moment.

The personal battles being waged are numerous and deadly. The losses feel as if they are mounting even for those of that look objectively successful to the outside.

Health challenges and illnesses are debilitating and expensive. The past traumas of dysfunctional families weigh on the more functional among us. Families struggle to cope with addiction, depression, and suicide. Violence eats around the edges in too many cases.

I see more people pulling back into perceived safety as they look to escape the wounded and the traumatized. We’ve got enough troubles in our own family so why take on problems that aren’t our own?

The ghosts of bad decisions and long troubled histories linger. The weight is heavy and I see people stumbling.

Categories
Emotional Work

Day 963 and Chronic Stress

I don’t think of myself as living a particularly stressful life. I’m one of the luckiest people I know. I love and am loved by my family. I own a homestead in Montana. I work with brilliant people.

My one burden in life is my health. I don’t want to undersell how much it affects my life (my ankylosis needs careful management) but I simply treat it as a fact of life. There is no reason to be upset about reality.

As social fabric tears and lives get worse under stress, it’s easy to become a victim to the things in our lives that trouble us. We can compare our gifts to others but one man’s troubles is another man’s perfect life.

I see the stress that is affect everyone I encounter. The fears range from existential to quotidian. Everything from the challenge of finding a doctor to the collapse in fertility rates can be a sign of the times.

I work to regulate my nervous system to accommodate whatever reality is in front of me. Sometimes that will include stress lot of my control. But I can work to control my response to it.

The better I get at this process of regulating myself I open up to the world. Taking on the agency you have available to you is a powerful social signal. I connect with others more readily as I show others that I can take care of myself.