Category: Chronic Disease

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Chronic Disease Emotional Work

Day 191 and Logistical Leverage

I hate logistics. It’s not that I am incapable of operational tasks, but I do not find them enjoyable or energizing. I’m happiest working from the 30,000 foot vantage point and most stressed when keeping tabs on the 1,000 foot details. Thankfully I discovered this about myself early in life and had the good sense to choose a life partner that feels the opposite.

My husband is a genius operator and loves logistics. He can find efficient ways to manage nearly everything. He is a COO both professionally and personally. He manages everything about our household. I used to feel a bit guilty about the fact but I’m objectively terrible at home economics as frankly I just get in the way when I try to pitch in. All those sit-com jokes about husbands who can’t fold laundry right? In our house it is reversed. Which is a bit embarrassing as I worked in fashion but bygones. I just get in Alex’s way and he would prefer not to be slowed down by my bumbling efforts.

Recently I had to take on life & home workload in addition to my own. He had to take his first trip since the pandemic began. I haven’t been without him since February of 2020 so it has been a while since I’ve had to manage without him. And wow did it show!

I maintained the same of basics into my system, the same routine, supplements, diet and treatments with the only addition of Alex’s workload. I only added an additional 2 to 3 hours to my time obligations, so roughly an extra 9% my day, but it had close to a 30% impact across all my core metrics.

Because I track so many biometrics on a daily and even persistent basis I know my physical and emotional baselines. Without Alex managing life, my physical capacity dropped across the board over two days. The additional household logistics, errands, cleaning & cooking & overhead dramatically impacted my capacity.

Within 48 hours all my body’s baselines worsened. My HRV went down an astonishing 22%. Whoop gave me recoveries at 33%. My RHR went up by a full 10%. My qualitative pain scores went from consistent 3s and 4s to a 7. My energy scoring went from a perceived 6 to a 2. Gyroscope dropped my health grade from 85 to 78. It was a mess.

It turns out that Alex has added significant capacity to my life. Work that takes him just a few hours a week enables me to thrive. It takes very little from him but it means the difference between barely getting by and having the capacity to work for me.

Maybe it wouldn’t be as easy for another person. Alex is a very high leverage person in general but particularly for me. 10% of my day for a 30% improvement is significant. If your spouse is the operator in your partnership it may be quite fun to quantify their impact. Nothing says I love you quite like proof of how much their efforts impact your biometric data.

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Chronic Disease Emotional Work

Day 186 and Broken

I’m coming up on my two year diagnosis of ankylosing spondylitis. I’ve had two years of feeling broken as I waded though the long haul from being bedridden to now being reasonably healthy. But I’ve yet to let go of the feeling that I’m broken.

Being a productive worker has been a part of my identity for my entire work life. To experience two years of not contributing financially to anything nearly broke me. What value did I have? How could I ever recover?

But I’m not broken. I’ve got more limits on my time as I just focus on health and wellness to avoid a repeat of my medical leave. But I doubt most people would know or care. I’ve been doing some of the best work of my life recently. So why does this feeling of brokenness persist?

Some of it is tied to me making some mistakes as I transition back to workout full time. I feel I owe people my time and work as I let them down. I feel I have a debt to pay off (not a literal one but more emotional for having stuck with me when I wasn’t useful). So I’ve been tolerating some people and work that I should probably let go. It takes as much energy to work on small potatoes and worry oneself about as it, as it does to aim for the big projects and goals.

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Chronic Disease

Day 183 and Pain

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

It’s not an original thought I have here that pain is challenging to articulate. Virginia Woolf wrote On Being Ill

but let a sufferer try to describe a pain in his head to his doctor and language at once runs dry

I have an intellectual grasp on what is happening in my body. I can tell you what is happening in great detail. I take an immunosuppressant twice a month to keep the swelling in my upper thoracic spine down. These drugs makes me a bit more prone to infections as we need my immune system to be suppressed to prevent spinal swelling.

But when an infection takes hold my immune system fights back, the swelling in my spine comes back and the pain resurfaces. The pain will sneak up on me despite me being armed with all the knowledge about this cycle. It is still a surprise even knowing it is coming.

Yesterday I went to a doctor and got antibiotics. I came home and got into bed. And I got stuck. I couldn’t figure out what was happening to me. I’d been reduced to a consciousness unable to communicate with the outside word. I couldn’t even communicate to myself what steps needed to be taken next.

Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language […] Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.

The Body in Pain: The Making and Unmaking of the World, Elaine Scarry

I go from having full intellectual capacity to understand my situation and discuss it with others to being stripped of language within hours. I couldn’t even tell myself what needed to happen next. I was stuck in bed. I tried to watch television but couldn’t focus. I tried to play mobile games and couldn’t focus. I was slipping into pain’s grip. It was only a reminder from someone who loves me that I had been lost from this plane of consciousness. “You are in pain Julie.”

I am resistant to taking pain medications. But it’s less about fear of their addictive power or potency. I am resistant to needing their help. When I’m not in pain I have the capacity to “tough it out.” I am able to hold onto the idea that my mind has some agency over my body. But as pain takes over my senses, I lose my agency and willpower. Pain steals the broader parameters of your personhood. I resist taking pain medications because I do not belief it is possible for me to leave my personhood so completely that I need their help.

But I do need their help. My focus narrows to the pinpoint of pain as it’s intensity blooms. And I don’t even notice it happening. I go from independent human to small body gripped in suffering without any awareness of how it happened.

Any other locus of power or human capacity that I normally retain shrinks to fit around the intensity of the pain. I am not even able to seek relief. That would suggest I retain the critical thinking to recognize what my physicians have prescribed I take and the capacity to enact it. I need to be reminded to take a Tramadol. I need to be coaxed into an OxyContin.

And then relief slowly slips over my mind and body. We think of opioids as drugs that shrink your eyes to pinpricks but I experience their relief more like a dilation of the soul. As the constrictive point of all encompassing focus that is pain is relieved my entire world opens back up.

I regain my mind, my willpower, my focus, and feeling in my limbs. That’s something they don’t tell you about pain. When you are in it you won’t feel anything else. The pleasure of a stretch or the relief of a leisurely walk don’t exist in the same reality as pain. You go from having thousands of senses to just one. You only sense pain.

If this all sounds unfamiliar to you I pray that it stays that way. But if it comes to pass that you are gripped by this monster know that it is ok to relieve your pain. There is no morality to this ghost that takes over your entire world. The only moral good that comes from it will be created by you. Pain will overcome you. You become stuck in it. And sometimes it is within your power to break free.

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Chronic Disease Emotional Work

Day 173 and Waves

Humans crave linear narratives. We do something. It has an effect. We see an improvement. I don’t know where we got this logic of clear cause and effect and simple logic arcs, because it doesn’t seem like it matches reality. Horizontal thinking has a much longer history. In antiquity no one insisted on a 3 act play. We wandered through the Odyssey.

Maybe this is why we impose routines and rhythms on our daily lives. I personally require a lot of external routines to tame my physical body. Most of my days are dedicated to simple repeatable patterns. It gives me strength. Humans look to seasons and the festivals we have labeled on top of changes. We plan our lives according the angle of the sun.

But I’m skeptical that the pattern recognition my mind lays out for me of linearity is real. Life is fully of squiggly lines. Biology resists straight lines like unpredictability is some kind of dogma. We spent all pandemic resisting exponential growth because it just didn’t make sense to our little minds.

I get lost in cause and effect every day. The insistence of my emotions that because I did “good” responsible things (like workout, meditate and therapy) means I should feel good afterwards is part of my linear bias. But it’s not true that because I was good in my activities that I should feel good afterwards. Sometimes I don’t. I can have a perfect day and feel like shit. Because fuck it cause and effect isn’t that clean. And everything is multi-causal anyways.

Life comes in waves. It builds and pulls back and then crests and crashes. I’m sure we can map some of it but I’m getting much more comfortable simply riding the waves of kids as they come in.

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Chronic Disease Emotional Work

Day 168 and Red Queen Running

On a typical week I spend about 8 hours on health care appointments. This doesn’t include basic human maintenance like good nutrition, exercise and sleep. These are straight up hours I spend with health practitioners. It’s a lot.

I feel a little bad complaining about it as most people don’t have the opportunity to pursue some of the things that hold me together. The American medical system is built for those with spare money and time. But I’m envious of people who don’t spend all their spare time and money on healthcare. I cannot even imagine what I would get done if I was as healthy as the average person.

Regular people have the luxury of emotional dramas, personal hobbies and families. I on the other hand get to go to the doctor. I don’t get to stay up all night obsessing over men. I don’t have the capacity to raise children or parent. I don’t get to train for marathons. I’ve written before about the envy I feel for the lives of the fully able.

But mostly I resent that I have to spend so much time on my health just to maintain my progress. I feel like I’m trapped by the Red Queen in like Alice in Through the Looking Glass.

“Now, here, you see, it takes all the running you can do, to keep in the same place.”

Lewis Carroll

Some might argue that having a disadvantage like this focuses you. I’ve become quite a charmer over the years to offset my physical disabilities. I do more in less time because I have to in order to compete. I’ve found ways to thrive in late stage capitalism. It’s entirely possible I’m not standing still.

There is a whole theory of evolutionary biology that these pressures just to maintain your place in the world are adaptive. In fact, it is called Red Queen theory. I guess just needing to work your ass off just to stand still is pretty normal.

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Biohacking Chronic Disease

Day 162 and Reactivity

I’m sensitive to everything. Physically I mean. I’m surprisingly tolerant of emotional volatility, which means I’m well suited to entrepreneurial nonsense and financial chaos. Physically, on the other hand, I’m a hot house flower. Orchids have a wider band of tolerance than I do. If you don’t feed, water and rest me on a precise schedule I will cascade from blooming to dead in a few hours. Only a slight exaggeration.

I’ve got endless examples I can share. I can go from zero strain & a low heart rate when working out at 65 degrees to vascular distress and heart rate spikes at 75 degrees. When I was younger I would get drunk from one drink and now I can’t even have a sip of wine without turning beat red. If a drug has rare side effects I’m virtually guaranteed to get it. My doctors are pretty familiar with this now and like to make jokes about it. “Well .001 of patients experience thinning hair so you will probably go bald!”

On a day to day basis I hate this because it means I have a lot less flexibility to fuck around. I will find out. I need to keep strong rhythms and routines. And I can often spot when even a planned and positive therapy has negative consequences almost immediately.

For instance, I take an immune suppressing biologic every two weeks to keep my immune system from getting too worked up and causing inflammation. I’ve got ankylosing spondylitis which means the swelling shows up in my spine. It’s good to keep this suppressed. This drug lets me walk and live normally which is awesome! Yay! But on the day of my shot and about 24 hours after I feel like shit. I can literally feel my immune system getting shut down in real time. I’m sniffly, tired and slow today. While this is good in the long run, we want to keep my immune system down, I’m grumpy as fuck that I feel the effects of this drug.

The upside to this reactivity is even modest changes show up in my tracking tools. I can leverage many subtle therapies, diagnostics, treatments and supplements to significant effect. It’s probably a factor in my affection for biohacking. I can see results quickly. The feedback loops tend to be short and noticeable for me, which thanks to tracking many variables over a long time span, means I can isolate effects within relatively short order. So while I’m a pain in the ass patient I’m also a pretty emotionally satisfying one. If you make a correct diagnosis on me you will find out pretty fast. That’s so satisfying.

The irony of this short feedback loop reactivity is that I mostly work on longer term horizons and on extremely volatile things. Maybe it’s because I get the benefits of compounding because I have built up so many positive habits? I don’t get worked up by any individual data point because I’m used to seeing extreme reactions in myself. No big deal. I don’t mind chaos at all because I don’t have much chaos in my daily life because I’m constantly managing my own biology. Maybe I’m actually perfectly suited for my professional life now!

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Chronic Disease Emotional Work

Day 158 and The Mondays

I feel like Garfield but I don’t like Mondays. After two glorious days of reprieve, on Monday I restart the constant parade of medical appointments, biohacking activities and other habits and routines I maintain to keep my body healthy. And even with all that effort, my health is still bottom decile. The routine I lay out below can feel overwhelming with the amount of time it takes and yet if I don’t care of my body…well it won’t take care of me.

Garfield the grumpy cat falling out of his bed as he realizes it’s Monday

I woke up at 730 and made myself a breakfast of berries and homemade yogurt from raw milk. I used to be an intermittent faster but now I have to take medications with food so breakfast is back.

At 830 I read the news headlines and top articles from Bloomberg, New York Times, and the WSJ as well as listen to NPR’s morning edition. Then I need to do my physical therapy and stretching.

At 9 I go for an hour long walk. In order to keep inflammatory conditions under control, it’s recommended that I do at least an hour of low impact walking to keep limber. During my walk I will listen to more financial news and podcasts. Today I treated myself to Exit Scam by Aaron Lammer. Normally I listen to Odd Lots or something more specific to my corners of finance like Flirting with Models. I decide to go with Exit Scam as Aaron Lammer impressed me so much in Odd Lots a few weeks ago with his episode on yield farming.

At 10am I organize my supplements for the morning. I take Ray Kurzweil levels of stuff that is monitored by not one but two functional medicine doctors. This doesn’t include the slurry of powders I drink in water, just the nice easy pills.

Then I am hooked into a EEG for an experimental “brain training” protocol called dynamic neurofeedback. The best metaphor I’ve got is to defrag your mind and reorganize your pathways. It’s basically CBT with an EEG. The session lasts for 33 minutes I also sneak in a meditation during this time.

Electrodes hocked up to my head for an EEG as I do dynamic neurofeedback

11am means it’s time to lift weights. I can’t do much and I need long rest intervals but I did a full squat cycle.

1130 has me showering and doing doing cold therapy. Yes I stand under a freezing shower for 5 minutes and do Wim Hoff breathing. Somehow I also manage to wash my hair.

At noon I have a banh mi (the pork and short rib from Daikon are quite good) and finish an episode of Mythic Quest. It’s wonderful and I recommend you get Apple TV just for this and Ted Lasso. I needed the break to just hang with Alex and do nothing for a minute.

Finally at 1pm I am able to get some work done. Getting emails out, checking on deals, reading some pitch materials and checking in on portfolio companies. I should have a straight shot through to 3pm to work before therapy but my mother and I ended up on the phone.

3pm is a full hour with my therapist. Arguably the most important hour of the week, especially for getting my mind right for Tuesday’s productivity.

4pm I have a brief break to take more supplements before I go back for two hours of group therapy.

Yes you read that correctly. On Monday I have 3 hours of back to back therapy. What else can I say? I’m committed to my emotional growth. We do family systems work and group work is particularly helpful for seeing your reactive patterns and how they are or are not mirrored back. As much as I sometimes resent how much time I sink into this work I do believe it’s the best ROI on time. We repeat the patterns of our childhood unless we clear them.

Finally at 6pm l have time to do things that are not explicitly for my mental or physical health. So yeah I’ve got mixed feelings on Monday. I want to live life beyond treatments and working on myself. I wish I could live without meds, supplements, physical therapy, walking, lifting weights, meditation, and therapy. But I guess that is what Tuesday’s are for. Monday is just Monday. And yes I repeat some of those activities every single day.

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Chronic Disease Emotional Work

Day 157 Brushing Your Teeth

I feel like I need a break from having daily obligations for a day or two (it was a big week) but I’m also a creator of routines and rhythm. When you’ve got a chronic disease you don’t get to skip stuff like your medication or healthy habits without some consequences.

One reason I don’t find myself burdened by writing something long form everyday is that I see it as a habit like taking vitamins, taking a daily walk or brushing my teeth. It’s just something you do.

But I can chose how much time I put into writing or how long I walk (though it seems prudent to let the electric toothbrush run it’s full 2 minute cycle). So I’m reminding myself today that it’s alright to keep today light. If you want something good to read I recommend the Thursday Style Problem.

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Chronic Disease

Day 156 and Social Accommodations

One-on-one synchronous communication requires energy and commitment. If you have plenty of energy and few health problems maybe this isn’t intuitively obvious to you why it’s tiring for me. To understand I highly recommend the Spoonie theory of living with chronic disease. A Lupus patient Christine Miserando explains to a friend using “spoons” as a prop/metaphor.

So, she laid out a handful of spoons on the table and explained that the spoons symbolize all of a patient’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time. When you run out of spoons, you can choose to borrow against the spoons of a future date, but there are consequences. When you deplete your spoons, you are bedridden. Unable to manage the simple activities of life.

I work with a limited set of “spoons” each day. If I manage my energy budget well you would never guess I’m any different than you. But I optimize my day around accommodating my firm energy budget realities. I think of it as a wheelchair or a crutch. It’s a tool that helps me extend my capacity. I can do more with less energy and thus I need fewer spoons.

One area that makes a huge difference is digital asynchronous communication. Written documents or presentations, text messages, email, Slacks, heck even voice memos are all great ways to reach me as long as you don’t expect an immediate response. Asynchronous communication means respond when I have the energy. I rarely feel overwhelmed by those as there isn’t a need to respond right that moment. I don’t have to use a spoon to get you a response. If you need FaceTime or a phone conversation then I have to work around your preferences (which might not be strictly necessary for the information it’s just what you happen to link) and then you are also asking me to prioritize your preferences over my limited energy banks. Which can feel disrespectful if you don’t suffer from strict energy budgets. You are asking me to take a double hit. Accommodating me makes me more likely to budget more energy and time on you in the future if you respect my energy now.

This means you may need to reach out more. If you expect a synchronous back and forth you may end up waiting on me. Please don’t wait on me to reach out and have energy & free time at the same time as you. You will wait a long time! Reach out and we will work it out asynchronous style.

This is why I love social media. It is easy way to connect people to what I am doing on my own tike frame I have extremely limited energy and capacity to express that one on one. If I had to I’d end up limiting my entire world to like 3 people. My energy for one to one communication is limited. As someone who is disabled and chronically ill, I feel lucky that I have access to technology that allows me to expand my capacity to connect and communicate. If I didn’t have these tools my world would be severely limited as each conversation and interaction I have takes significant resources.


Like a myriad of writers who have been sick before me (Walker Percy, Virginia Wolf to name a few) I use this tool to extend my life and influence beyond the bed in which I spend 12 hours a day. So please understand I cannot always communicate in real time or in person for everyone. It’s the highest energy usage thing I do. Let me use technology to expand my world beyond my bed. We will both get a lot more out of it and you will find that thanks to technology I can can as much done as you.

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Chronic Disease Emotional Work

Day 147 and Over My Skis

For a Colorado native (let’s ignore that I was born in Silicon Valley) a number of our most cherished pastimes are kinda “meh” for me. Skiing is a sport that I can take or leave. That apres ski life is much more appealing than cutting it up on the slopes. But one key metaphor from ski culture gets used lot. “I’m over my skis.”

To be over one’s skis is to risk crashing. Being over ones skis happens out of enthusiasm. An inexperienced or unfocused skier lets their center of gravity tilt forward over their knees. Best case scenario, you are simply going too fast and you better “pizza” your skis to slow down. It’s a endearing but slightly awkward experience which is what makes the metaphor so appealing. It’s never a bad faith metaphor merely a goofy oops.

I got over my skis this week. I’ve been so excited for my workload (new investments, new startups to advise) and some new structures forming in my life (chaotic.capital is coming into focus) that I’m leaning in and finding myself going too fast. A friend of mine, who is my favorite person to “over do it” with, was on the phone with me a lot. I was excited to talk to her. But all this added up.

I realized oh shit I need to slow down. I haven’t crashed yet but I’m french frying. There is still time for me to “pizza” or in the immortal words of South Park’s ski instructor Thumper

If you french fry when you should pizza, you’re gonna have a bad time

I love french frying, the food, the ski position and the metaphor for speed. I want get over my skis. But if I don’t pizza “I’m going to have a bad time.” So with true Colorado wisdom it is time to kick back, get some THC and pizza. May this edition of Rocky Mountain wisdom aid you in finding balance on the slopes and off.