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Biohacking Chronic Disease

Day 668 and Health Multitasking

I didn’t take my own advice recently. When folks ask me how to begin biohacking I tell them to take it slow. You should change only one variable at a time.

Biohacking requires that you don’t change up your variables too often or too quickly. You need to establish trend lines. The biggest mistake you can make is being “noisy” as you will never isolate the meaningful variables. And you won’t stick to it. So it’s a double fuck up. Clean reliable data matters. Don’t change too much too fast.

Day 91 and A Beginner’s Guide to Biohacking

My biohacking has been focused on improving my core inflammatory markers for several years. Secondary metrics like pain and energy got better as my erythrocyte sedimentation rate and C-reactive protein went down.

What I did to improve those metrics was complex, time intensive and expensive but it was pretty clear what outcome I was pursuing. My broad goals were simple. The tactics merely a function of one overarching strategy to lower inflammation.

Recently I’ve been a bit sloppy about my goals as my SED rate and CRP approach normal. I got excited that I might be stable enough to pursue some new goals. I am always looking to lower my doses of pain management medications. But the real shiny object for me has been fat loss.

I’ve struggled to stay lean as several medications that improve inflammatory markers have weight gain as a side effect. I struggle with shame about my weight. So much of popular culture portrays weight gain as a function of poor impulse control. It embarrasses me on some deep core level that others might think I’m lazy. If immediately trigger’s defensiveness for me.

I can rationally know I was pursuing a responsible health by taking prednisone during acute phases of my illness, but a part of me is still so embarrassed by the side effects. What must people think of me? Even if I explain that it’s a side effect of medication I fear that it’s still perceived as been slovenly.

So I decided to go back on metabolic drug called ozempic because I just hate carrying excess fat. I thought I could add it into my routine. But I am not doing as well as I’d like with the side effects of the injection. I’ve now vomited two Sundays in a row and been unable to eat. That is destabilizing enough that it is impacting my other goals like a slow dose down of non-steroidal anti-inflammatory drugs.

Maintaining low inflammation rates with lower pharmaceutical intervention is obviously a huge goal of mine and far more crucial than dropping a few pounds of fat. Especially because my metabolic markers are all in the clear.

I just so badly want to put behind some of the visible markers of my disease. It was hubris to pursue ozempic when I know I have other metrics that are more important than my shame about having steroid fat. So next time you see someone who is overweight I encourage some empathy. You never know the whole story of someone’s health.

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Emotional Work Startups

Day 655 and Accountability

Being accountable to myself is much harder than being accountable to someone else. I suspect this is true for most people. We all wish for ideal childhoods with parents who provided for all our emotional needs. And so we look to bosses, spouses and authority figures as substitute parents.

Most of our adult lives are spent trying to find some ideal mommy or daddy to soften the trauma and lack of our childhoods. We remember these issues far too vividly as adults through the perceptions of our inner child. It is a huge challenge to recognize that feelings are not facts but these feelings nevertheless run our lives.

The unfortunate truth is that the only ideal parent that can ever exist for our inner child is ourselves. We must comfort, protect and nurture that part of ourselves that still feels lacking because no one else can give it to us. No one is coming to save us. We are the parent to our inner child.

Which brings me back to my challenge with being accountable to myself. I struggle to care for myself the way I need as I too often perceive myself as not being good enough. If I just worked harder or spent more time preparing or if I just did one more pass on my pitch deck. You get the idea. I’ll push myself right over the edge of success into inaction and self torture.

One way I’ve been able to overcome this need to push myself into a fantasy of accountability is simply by building in public. If I’ve said what I plan to do then I’m no longer just cultivating it inside myself but I’ve let the idea come forth into reality. Once it is outside of my own tortured bubble of personal accountability it can gain momentum.

I am raising money for a venture fund and now that I’ve put that in public it’s not just about me. It’s about the thesis, the LPs, the founders, and the market. And it’s much easier to be accountable to a shared reality with other people than some fantasy version of perfection inside my head. If you’d like to be a part of it and are an accredited investor here is a link to my calendar. If you’d like to read more about the fund I’d be thrilled.

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Emotional Work

Day 648 and Open

I share a lot of myself online. For an introvert with more than a hint of Autism you’d think I’d find it mortifying to be as open as I am online. My therapist would probably say it’s because I like the distance provided by sharing online and it’s hard to disagree. But I like being open to the world. I want to be a little beacon in the storm so that you might find me if you are looking.

But while I am so open to the public online, I am protective of my personal space for a number of reasons. I guard my health and my body as I manage a chronic disease. I prefer to operate from a place of non-reactivity as I like my central nervous system to maintain eustress. And I am not generally energized by spending time with others. I am energized by alone time.

But like any other human I do want to be seen. And I want others to feel like I am seeing them. I prize empathy and openness. Showing my vulnerability and weaknesses with the world is part of how I try to be seen and also let others know I see them.

My efforts to be healthy and my struggles with pain and fat are human problems. Maybe other aspects of my life are less relatable, but being worried about my weight and struggling with physical discomfort is the stuff of being an average woman.

I am perhaps overly sensitive to what I perceive as failures and short comings. I project confidence but it isn’t always natural. But I also recognize that, even if flaws terrify the part of me that is still emotionally a child, these supposed failings are the human condition. Everyone has elements of their bodies, their emotions and their intellect that they occasionally feel shame about. We are all working to let go of that shame.

I want the people I work with, especially the founders who are pouring their lives into their companies, to know that they are psychologically safe with me. Doing new things is hard. Creation is hard. Building is hard. Startups are hard. Shouldn’t your investors and advisors be a safe harbor to share those challenges with?

If you are feeling scared or ashamed or angry about yourself, I want you to know you are not alone. It’s ok to be open about your power and your accomplishments and your unique genius. And it’s also ok to be open about all the things you struggle with as well. You contain multitudes.

So if you see me putting out huge asks online or sharing incredibly embarrassing details, I want you to know it is because I see you and I trust you to see me too.

And if we are meant to be in each others lives then it will because we are capable of seeing the multitudes in each other. And if that is not for you that’s ok too. We all deserve to be loved as we are. I trust you. And I hope you might trust me too.

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Emotional Work

Day 641 and Recovery

This might sound a little shocking but I sleep at least 9 hours a night. Sleep is one of the obsessions of the biohacker. If I’m lucky I might be able to get to ten. It’s always a sign of me doing poorly if I am not sleeping a TON.

It’s usually the first sign I am not adequately reserving time to bring down my central nervous system into rest and digest. I’ll stay up till 11pm and then it’s a hop skip and a jump to only sleeping seven hours.

The best combination of effort and exertion for me is only adding in specific necessary stressors during the day and give ample time to recovery. Much of my work requires focus and information processing and synthesis. And that isn’t improved by overwork and exhaustion.

Nevertheless I am still carting around a lot of lessons from my childhood about the value of hard work. More is better. More hours is best. And this is a fine and noble thing if you do work intelligently with your goals in mind. Simple exertion is sometimes the best option. But not always.

Categories
Aesthetics Biohacking

Day 624 and Goblin Mode

A trigger warning for folks. This post contains discussions of poor eating habits, food trauma and possible eating disorders.

As much as I like being a bit of a loner, I am often comically inept at having to take care of myself. My husband has been busy with work and I have been left to my own devices to manage cooking this week. Let’s just say it went a bit poorly. Or at least it was comical. My husband is practically a chef and I can barely microwave a hot pocket.

I’m exactly the sort of person that Soylent, the tech bro reinvents NutriSlim beverage, was designed to appeal to. I am easily overwhelmed by the thought of even basic cooking. I’m extremely picky about texture, smells and presentation (thanks autism). And if I’m really honest I just don’t want to eat anything that isn’t perfect. So if it’s not exactly what I want, I might has well have a nutritional slurry. I hate to waste calories in unappealing food so I’d rather get in my macronutrients and vitamins.

I’m embarrassed to say that I did exactly that for a few meals this week. I tossed 2 scoops of protein powder, a scoop of vitamin mix, and some GI stomach support into a glass of water and called that dinner. Even lower rent than a packaged shake but probably healthier. I got 35 grams of protein out of this bad boy.

A protein slurry in water.

I realize this sounds like I’ve got an eating disorder. And maybe I do. Before anyone has a clue that I might be autistic I had some knock down drag out battle of wills with doctors.

One of the defining traumas of my childhood was my pediatrician telling my mother I needed to eat more dairy. I hated the stuff and refused milk & yogurt as small child. My doctor’s solution (and I am not making this up sadly) was to not allow me any food till I ate dairy

Julie Fredrickson from Day 368 Eating Disorder Season

That story doesn’t end well. I didn’t eat the dairy. I passed out. Starving kids into compliance is perhaps a bad idea. But it did leave me with a sense of comfort and control with fasting. If I cannot eat for any reason I know I will be able to manage feelings of hunger. So not a total loss.

I have enjoyed some of this feral goblin mode stuff but I’m glad that Alex is back at his cooking now that the week is over and it’s Friday. Pulled pork is definitely better than nutritional slurry. Well, sometimes slurry has its place.

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Emotional Work Preparedness

Day 597 and Responsibility

I’ve noticed a deepening of my sense of personal responsibility for my own experience of daily life since we moved into our home in Montana. It’s the first home my husband and I have ever owned our own house. And we jumped into the deep end with a rural farmhouse.

The freedom to do whatever we like to our own property has been intoxicating. Even small changes are deeply satisfying. Or perhaps it is because they are small that they are such an effective demonstrations of how it is possible to derive a sense of satisfaction by taking responsibility for absolutely everything.

Let me give an example. I always apply moisturizer after washing up so my hand tends to slip on rounded knobs. That used to be a thing I’d just tolerate as a small inconvenience. But now that we can do absolutely whatever we like to the house we decided to just replace all the door knobs with door handles. Just said fuck it this little annoyance simply doesn’t have to be something we tolerate. We can take responsibility.

Is this giving us a false sense of control over our lives? Maybe! Being human is still mostly a chaotic experience. But we don’t have to tolerate any of the little bits of chaos over which we now have total control. Did I have control before? Also yes.

I could have stopped applying moisturizer and accepted needing dry hands to turn a doorknob. There are obviously always ways to take responsibility for any situation. But it sure feels great to take responsibility for living the way you prefer. Which in my case is with soft hands.

Categories
Aesthetics

Day 596 and Easy Does It

Nice and easy does it every time. Or so says Frank Sinatra. Who I’ve got to be honest doesn’t seem like a dude who isn’t pushy. I’m extremely pushy so I get it. Taking things slow isn’t my vibe. But if he can take it slow maybe so can I.

I’m getting the urge to rush again as my body settles into Montana. The better I feel the more I test my boundaries. Today I stupidly sat in an uncomfortable chair when I fell into focus fugue on something I was rushing to get done.

The problem now of course is
To simply hold your horses
To rush would be a crime
‘Cause nice and easy does it every time

Frank Sinatra

I should have taken an extra beat and settled myself somewhere comfortable to work but I didn’t. I was rushing by all the stops along the way to finish my task. I still got it done but I wish I’d followed Sinatra’s good advice. Rushing was indeed a crime against my spine. Perhaps for the rest of the week I’ll just play on repeat in my head “nice and easy does it every time.”

Categories
Chronic Disease Emotional Work

Day 550 and Boundaries

I don’t maintain boundaries well. I am embarrassed by my needs. Ashamed even. I’m afraid if I maintain the boundaries I actually need I’ll doom myself to a life of loneliness. No one is going to go out of their way to hang out with someone who can’t do fun shit right?

And so I let my own needs slip. I agree to do things. I tell people sure I’ll meet up. I’ll agree to go to a meal together. I pretend to be excited about going somewhere. I yield to the expectations of a normal life. And then I hold myself together as long as I can. I’ll get some enjoyment out of my time with loved once. But after a few days if I don’t get rest and recovery I will be in a rough spot.

It always ends in a crash. When I know I could simply draw firmer boundaries and take time before it becomes a crisis. My loved ones are confused by how I continue this cycle. Why didn’t you say something? Why did I agree. And I honestly don’t know sometimes. Because I’d never agree to do anything ever if I had my way.

And I’ll admit I’m afraid that if I never do anything eventually I’ll be forgotten. That no one will go out of their way to be with me. I can tell myself that this isn’t logical. That this is just the scared inner child who experienced being left alone when she was small. That reality doesn’t reflect reality any more. But I’m not so sure. Maybe my nearest and dearest will still come out for me. But I do think we live in a harsh world where we mostly don’t care if others disappear into their homes forever.

Categories
Medical Travel

Day 529 and Close My Body Now

Menstruation is mostly an exercise in pressure changes. Cramping and bloating make for a good reminder that we are ugly bags of mostly water. Or if you prefer meet popsicles. But I don’t recommend flying while menstruating as the pressure changes, aka jet belly, that wreck havoc on your lower intestines don’t really need the extra help.

I’ve got a theory that shorter flights are worse for jet belly because all the fluids and gases that are rumbling about inside you have less time to adjust. If you’ve never noticed that your lower half is bloated and rumbling after a flight, well, lucky for you. But I’m pretty sure you are also lying.

Our flight got put in a holding pattern over Denver as we waited for a thunderstorm to clear out. I could not have asked for a better metaphor as my cramps kicked into high gear. My chatty seat mate kept trying to engage in conversation and all I could think was I’ve got to shut my body down.

And then as if being crampy and bloody wasn’t embarrassing enough I started humming a twenty year old techno tune from Madonna. Yes, I remember the lyrics to her James Bond song.

I’m gonna destroy my ego

I’m gonna close my body now

This turned into a mantra as the pain and discomfort threatened to kick my stress responses into a cortisol spiral. I began a series of breathing exercises and kicked myself into a meditation so deep my poor husband couldn’t reach me. Madonna might have had a point. Ego destruction and closing down your body has a place during intense pain and discomfort. It only has to hurt if you let it.

Categories
Chronic Disease

Day 507 and Better is Not Binary

A close friend of my husband and I sent me a sweet check in text message today saying he hoped I was feeling better. Our friend is a sincere and empathetic person. Because I know know he does care for me sincerely I said how I was actually feeling to him. I was feeling confused.

lol I never know how to respond to this sort of thing as occasionally I get regular person sick but I’ll never not be disabled 😂😭

“Better” is a bit of a loaded term for me. It suggests so much. Absolute improvement like my flu is over suggests better. Or perhaps improvement that will stay put forever is better. Or maybe it’s a good day in a string of bad ones and that’s better. Better can be though of in both binary and scale terms.

Default healthy people think of better as binary because once they’re good enough they are “better”. The flu passes. They get back to normal. But if you’re chronically ill or disabled then better is on a scale and you never get fully “better” but rather ebbs and flows. I don’t always know how to articulate this to abled well people.

If you have someone in your life who you think of as not being very social, I’d like to ask you to discover if it is because of a physical disability or ongoing chronic disease. Maybe they aren’t social as they can’t accommodate your pace but they would love to spend time together with you if you accommodated their pace. A lot of folks are chronically ill. And we like to be friends with you. We just need you to recognize we require some accommodations from you.