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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.

Categories
Biohacking Chronic Disease

Day 138 and Positive Reinforcement

All my health apps think I’m dying. Which like no duh guys I’m an avid biohacker because I’ve got some health challenges. This is a persistent issue across most tracker apps but a compelling example is the Gyroscope app which relies on a health score system. Because I have a high resting heart rate due to chronic pain from ankylosing spondylitis I get served persistent alerts like the one below. “Warning you are more likely to get sick right now”

Of course, the issue is if you are always getting flashing red lights your inclination to do anything goes down. It’s the “boy who cried Wolf” problem. If I’m always being told I’m more likely to be sick now why would I ever modify my behavior to try and improve things? It’s always “now” so there is no point in doing anything to make a better future.

We see this problem across so many areas where our future selves would benefit from our present selves being more responsible, from personal finance to weight loss. If everything sucks now and nothing we do seems like it will improve the situation by a meaningful margin why bother?

App designers need to take note of this tendency of despair based on the gap between short behavior loops and long term goals. Nudging us towards improvements required positive reinforcement that rewards us for who we are now even as it seeks to compound the positive effects for significant change over time for a future outcome. If you’ve got 50lbs to lose you need to be rewarded for each small decision that helps you lose your unwanted weight, not be told everyday by an app that you are at risk of disease.

Overwhelming human minds with the enormity of a goal or a gap between our current stare and our long term goals doesn’t lead to positive short term behavior. If it did we would have solved climate change and racism by now. If we think a problem is within our power to solve we will try but fuck it why bother if it’s a parade of impossible scenarios.

If you are designing systems for people that need to make changes keep in mind this gap. You will see better results and happier humans if you lay off the doom and gloom. Positive reinforcement works.

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Chronicle

Day 131 and Doing Less with More

I’m a lot busier recently. Maybe it’s a function of the ebullience that is gripping a vaccinated America but I’m finding more obligations in my calendar than I can recall in years. It’s still not quite to the place I was when I was a full time founder but I’m noticing fewer long blocks of time to myself.

I benefit from unstructured unencumbered time at rest. It’s not that I need it to be alone time or quiet time as much I need full on rest. I thrive when I have no reason to get out of bed. I do best reading and synthesizing when my mind is free to wander without any obligation to anything but that space.

Even otherwise pleasurable but not explicitly rest activities like going for a hike or painting my toenails doesn’t register as rest to me I’ll feel a kind of indignation when I’ve had an otherwise amazing day (filled with leisure activities) but didn’t get enough rest. I’ll think “sure it was fun” but also “now I’m tired and that wasn’t restful at all” goes through my head. For me the most restorative thing is not to do anything at all.

In fact the further away my activity is from boundaries like being constructive the more constructive I am afterwards. I try not to set myself up with the expectation that I am rewarded by productivity when I am at rest. That would set in motion the same circle of doing activities and not feeling rested because it wasn’t explicitly rest. That would become a kind of self limiting belief that leads to workaholism which I’ve pledged to avoid.

I hope that as the enthusiasm of exciting work and better help take more of my time I don’t feel tempted to indulge in activities that don’t feel restorative to me. None of this year would have been worth it if I went back to old unfulfilling ways of living.

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Chronicle

Day 130 and Smiling When Sad

If you asked me my dominant emotion when I was younger I probably should have said anger. I was a fired up young woman. But as the years have gone by and the social benefits of seeming happy have piled up I’m finding it easier to spend more energy on smiling. This isn’t the same thing as being happy.

We like when people are friendly (even if we actually prefer they be kind) and I seem to have bought into it as a moral virtue over the years. I thought it was a gender thing but now I’m much more convinced it’s part of a family trauma cycle set in motion by my father who is exceptionally good at being liked. Cue Bojack Horseman joke.

You inherit your parents’ trauma but will ever fully understand it. Haha the cop is a cat.

Naturally I rebelled against perception of happiness and likability thing with a lot of anger as teenager. Cue lots of screaming stuff like “why do you care more if other people like you more than family” and you’ve got a pretty good idea of what I repeat to my therapist now as an adult.

And because intergenerational trauma and family systems work actually isn’t bullshit I’m starting to realize I stopped being angry and started smiling at some point not because I’m happy but because it’s a learned behavior from my childhood. And the smiling is papering over a lot.

What used to be passion, intensity and anger is fermenting into sadness over the years. Not because I’m actually sad inherently but because it makes me sad to lie about how I feel all the time. But I’m not entirely comfortable expressing any emotion. So now I smile when I’m sad. I’ve absolutely smiled when crying from sadness and grief.

Thankfully I hasn’t yet started laughing and smiling when I’m angry, but I fear if I don’t resolve this pattern and move on it might not be far off. I’ve still got significant work to actually feel my emotions in any given moment. Anger feels like it’s too reactive. Sadness like it’s a sublimation of something else. And if I actually am happy then I need to feel that. But I can’t force it with a smile.

Categories
Chronic Disease

Day 110 and Weed

As it is 4/20 I thought I’d share how introduced THC into my medical regimen. I suffer from an autoimmune condition that manifests as inflammation in my upper spine making me an excellent candidate for medical marijuana. As a libertarian I’m pro-legalization but I likely wouldn’t have chosen to use THC recreationally except that it happens to be a drug that has demonstrated benefits for my condition and is comparatively less dangerous than other pharmaceuticals I am also proscribed (namely opioids and high dose NSAIDS).

For some context, despite being a native Coloradan I had never smoked weed till this year. As a kid it just didn’t seem appealing (that’s what hippie boomers do), and to be candid as I got older I didn’t love the idea of tying a health need to something that wasn’t legal. I lived in New York for the past 15 years and while I could have had medical marijuana prescription I was frankly too intimidated to try. Without legalization I never would have attempted it.

Since moving home to Boulder during the pandemic I’ve been experimenting with different THC strains as well as combinations of THC and CBD. I’ve purchased a PAX (an expensive vape), worked through different flowers, butters, shatters, edibles and tinctures. It’s been enormously expensive (probably getting to be over $1,000) and demoralizing as quality, impact and consistency is variable. This despite living in a state where it is completely legal and has the foundation of a consumer culture where you can walk into any dispensary to receive quality advice and purchase wherever you like. Weed has a long way to go before it’s reliable in the way that other pharmaceuticals can be.

I’ve found that CBD on its own doesn’t impact me in any positive manner. But CBD when combined with THC seems to have a reasonable analgesic effect. And I do notice I feel better the next day. For me it’s roughly comparable to taking a double dose of aspirin. Different strains don’t impact me much though I experimented with indica and sativa strains own their own as well as mixes. Indica supposedly has more of a body high versus the mental high of a sativa. The only aspect I really noticed was it’s a challenge to notice a body high when vaping. This makes me have a slight preference for mixed as without a mental high it’s hard to judge impact and dosing.

Interestingly I don’t seem to get much of an impact from smoking or vaping period. Which is weird but I’ve got a weird body. I’ll need to Vape for an hour straight to get any noticeable impact. That’s made me much prefer edibles as it’s less time consuming and more controllable. I’ve been leaning towards a hybrid tincture or gummy that is a 50-50 mix of THC and CBD. THC on its own doesn’t seem to cut down the inflammation pain in the way a mix does. It really seems that the more you break out individual terrapins the less effective it is at driving a result.

My absolute least favorite part of using THC is the high. If I could see a reduction in inflammation and pain without THC and only using CBD I would be thrilled. But CBD just doesn’t on its own for me. So I tolerate the high that comes from THC on bad days. I can’t take it during a work day as it does slow me down mentally. I can workout while on THC and it has really improved my capacity to weightlift as exercise improves inflammation so it is a virtuous cycle. That is if I don’t accidentally push myself too hard. That’s a real danger when you feel better than you actually are. Pain killers of any kind are both relief but it’s helpful to remember tier the pain isn’t gone it’s just subdued.

All of this should be caveated with I don’t take very much (generally 2.5mg but sometimes up to 5mg) it’s not a daily drug. I use it as needed when I’m in worse pain than my regular prescriptions don’t cut it. This is all personal and I don’t recommend anyway try out any drug without checking with your doctors. But honestly I’d rather use THC than Tylenol. So happy 4/20!

Categories
Chronic Disease Chronicle

Day 105 and Envy

I didn’t have hobbies for a long time. People would ask me what I did in my free time and I’d give them a confused look and try to come up with a plausible activity like reading. I was embarrassed. Everyone else constantly doing shit. In reality, I didn’t have the energy for anything but work and taking care of life basics (and for a few years spare energy was dedicated to sex and dating but that’s different post).

I’ve been an on and off entrepreneur my whole working life. And if I’m totally candid I’ve had health issues that impacted my energy since I was a child. So while I have had things in my life other people would consider hobbies, they were slowly stripped from me. I stopped horseback riding somewhere between 16-17 when I dropped out of school. I told people it was allergies (which was true) but much of it was exhaustion. I was fighting just to keep up with obligations to education like taking tests for college and to prove I had learned enough to be considered a “graduate” by my school.

In college I was blessed to go to a school that wasn’t cool to have have parties. That made it easy to hide being too tired to socialize. Other students were in clubs. I didn’t join anything. I was thrilled to make it to my job (as a research assistant to a medical ethicist) and get home to my roommate and boyfriend to watch tv at night. I didn’t realize this wasn’t normal at the time.

Once I started my first company all I did was work. I had to socialize professionally so I spent a lot of time at fashion parties. While this is fun it wasn’t a hobby. I partied because it’s how I made my living. For a while I thought this meant I had a hip social life. Which was a nice lie. I had a glamorous job.

It started dawning on me around 24 or 25 after I sold my first company and had to relocate to San Francisco for the acquisition that other people didn’t live like I did. In San Francisco people hiked, did yoga, took classes, and all the other “bullshit” I looked down on. I looked down on hobbies not because I think work is better but as a defense mechanism. I was jealous.

All these people had energy at the end of the day. They wanted to do things! That was unfathomable to me. I could barely do work. How the fuck was I supposed to do stand up paddle boarding on the bay? I was not kind to people that had hobbies. I told myself (and they could tell) I thought they weren’t as good as me. Of course, now I realize this was the trauma of illness manifesting it. I couldn’t do what they did. Rather than feel sad or angry or some other productive feeling I decided I was better. All to avoid letting myself feel how angry I was that I couldn’t have that life.

I’ve come to accept that I still live more than most people even with limitations like illness. I don’t have to prove a good life with status markers like hobbies. Though I’m still fighting to get to complete functionality and control with my autoimmune disease. But even if I do get to a place where I can live normally I might still skip the hobbies. I’ll go straight for the pleasures like work. I’ve only got so much time so I may as well enjoy each moment with what I actually like.

Categories
Chronic Disease Chronicle

Day 104 and Having HP

When you live with a chronic illness a certain element of unpredictability is always there. As I’m settle into having a case that is under control (what I wouldn’t give for a term like remission but autoimmune doesn’t get terms like that) I find my body is more reliable. More days are good days and bad days can be papered over with drugs. And as an autoimmune case stabilizes you can take more risks to push through bad days without promoting a systems cascade. That means you can take more risks on a good day and have a positive outcome.

Today was a good day. It might sound strange but this was the first noticeable day where I worked a straight workday in over 18 months. I started off before 9am and didn’t wrap until 5:30. I barely broke for lunch. It’s not that I haven’t worked during my sabbatical and recovery months, but typically I try to keep a pattern of rest between work blocks. I doubt anyone feels great at 4pm but in particular I notice all my symptoms are at their worst in the later afternoon. Frankly people are onto something with siestas.

I’m honestly thrilled to have had an extended good day. I didn’t notice any major pain spikes at any point in the day. I can usually tell if I overdo it and need to rest. Sometimes it’s just a pain spike that forces me to lay down. That wasn’t the case today and even more excitingly I don’t think I dipped into any reserves to have a full day. I suspect I’ll feel fine tomorrow.

It’s honestly not that different from using up too much HP or lives in a video game. Sometimes you gotta do it but it’s expensive. And sometimes you go up against a boss and are like oh “huh” guess I’m stronger than I thought. Today I discovered I’ve actually built back up my HP. And I’ve still got all that old XP from years of grinding. It felt like I had misjudged the difficulty of a level I hadn’t played in ages. I was so sure I was going to get beat. But I sailed right though. And I’ve still got plenty of lives for whatever level I’m playing through tomorrow.

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Chronicle

Day 100 and Rest Days

When I first set out to write everyday I didn’t set a goal. I think in my mind I meant it as a month long exercise to create more. Now I’ve got no idea what will eventually break the streak. I’m sure when it happens (something is bound to occur) I’ll be frustrated and I will just keep going the next day I hope. I’m trying to remember that Banksy “when you get tired, learn to rest, not quit” graffiti with the little girl sitting staring at a bluebird. I know it’s the stuff of inspiration Instaporn but whatever works right?

I’ve managed to write through a fair amount of awful shit in the last hundred days so it’s not that I’m afraid I’ll quit. I’ve become accustomed to simply opening up the draft space and writing. I just start some days with no particular topic in mind. Its more the knowledge that I am going to need to take breaks. Maybe not from writing but from life.

Today is one of those break days. I can barely tell you what happened today. I’ve got a project with a deadline but as I pushed myself physically yesterday I found that I needed today off. Resting today gives me tomorrow. I know this sounds basic but as a workaholic I’ve not traditionally been good at resting when it’s not been forced on me.

Usually on rest days I’m prone in bed as I’m in too much pain and too exhausted to do anything else. I hid this for so much of my illness and now I’m almost comically transparent about it. You’d think I’d be considered a liability and no one would ever want to work with me (or be friends with me) and yet I’ve found that not to be the case.

The empathy I’ve found in almost everyone makes me wonder if we’ve got our reputation building advice all wrong. I was under the impression I needed to hide my illness and always excuse strength. But the more honest I am about my capacity and my limits the better my work and relationships get. I’m slowly leaving behind the persona of “always on” hustle “I’ll sleep when I’m dead” bullshit of my younger years.

I still have a lot of fear about being perceived as unreliable. There’s not much logic to it. I always meet my commitments head on and when I physically can’t people understand. I work with backups plans and teams so that its never a crisis if I simply need to rest. The work gets done with or without me because my reliability is a function of preparedness and collaboration now instead of will force and midnight marches. If anything I think this makes me a better partner to work with ss instead of relying on my “at any cost” personality you can rely on me simply slowly and with planning getting your further than we could have gone alone.

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Chronic Disease Chronicle

Day 93 and Distrust

I’m feeling pretty good these days. I’ve written about my progress and my biohacking. But one area I’m not improving in is consistency. Despite meticulous record keeping and a routine I maintain assiduously, it’s almost impossible to predict when I’ll have a bad day. They appear at random!

Most days were bad days the past two or three years. The good days really stood out. I noticed them because they were rare. Now I’ve got a pretty consistent pattern of several days on and one day off. Sometimes I’ll even wrack up almost a week of good days. I used to have bad months and bad weeks. Now it’s rare for me to have more than three bad days in a row.

But I’m still regularly caught off guard by bad days. Out of the blue for no discernible reason I’m in pain, exhausted and struggling with basic function. The pain is the first symptom. Radiating out from my upper spine it pins me flat on my back in bed. About all I can manage in that state of pain is my phone over my face and the light gestures required to work a touch screen. But I don’t know why I have these bad days.

I can do everything “right” and be feeling terrific and then I’m fucked up all over again on a dime. Now I’ve got a small pharmacy I can toss at my symptoms now so I can often medicate myself back to a tolerable baseline.

The issue is what should I do once I’ve recovered? Do I rest? Build up my strength? I used to practice “active resting” where I would engage in restorative practices even when I felt well. The idea was I was building up a reserve of energy for the next crash. But was that the wrong approach?

I’m beginning to think I should take advantage of every last moment of health I have. If I feel well then screw the “active resting” I’m going to use every good minute I’ve got to pursue my goals. Active resting doesn’t seem to have any benefits I can reliably track. And it seems no more likely I’ll have a good day if I have rested then it is I will have a bad day. At best it’s marginally related to a poor night sleep but once I’ve woken up to face the day the day is cast there isn’t it?

I hate that I’m unreliable. I hate that I can’t track triggers. Doctors have seemed largely sanguine on the issue. Some days will just be bad. Sometimes your immune response will be off. But I’m feel lost and angry that I don’t know how I can live life without some degree of predictability. The only thing I can rely on is that on good days I feel good. So maybe I should just pack shit in on those days. No restorative crap. Just go hard at my goals. I’m not sure this is a good plan. It’s probably a bad one. It could just be my addiction to work talking now that my mind knows my body can handle my hard living again. At least for a few days. But if hard living doesn’t produce predictable crashes then what should my takeaway be? Fuck if I know.

Categories
Chronic Disease Chronicle

Day 90 and Health ROI

The American attitude towards healthcare leans heavily towards pharmaceuticals. Much of what ails us might be mitigated by nutrition, supplements, exercise or physical treatments. But we tend to prioritize a “one and done” approach that lends itself to prescriptions for any ailment you can pinpoint. It’s not unusual to be on upwards of ten pills a day if you are chronically ill each one treating a distinct symptom. You mostly pray they don’t have any interactions and that the cure isn’t worse than the disease especially when it comes to drugs like opioids that can form dependencies.

I’m not entirely opposed to this approach if I’m being honest. A wholistic approach is a lot of work and when you are sick having the energy to do a bunch of shit is unrealistic. Even as I’m rounding the corner on controlling my autoimmune disease I still find it time consuming and often exhausting to manage all aspects of my health. The meal planning, the physical therapy, the body work, the exercise protocols, the sleep regimens, the supplement routines (mine easily costs upwards of $500 a month and no it’s not covered by insurance) and the nonstop recording and monitoring is practically a full time job. And you can’t even tell if it’s working half the time with crashes and system cascades that require heavy duty intervention. It’s hard to spot signal in the noise but that doesn’t mean it’s not there

Being sick in America feels surprisingly similar to being a startup founder. You get dismissed constantly. The workload rarely relents. And progress is only visible if you are diligent about monitoring core metrics that might reveal a trend line. It’s no wonder that entrepreneurs can be avid biohackers. We record and measure and monitor and hope that some higher authority (a physician or a venture capitalist) will spot the the key inflection point that may change our lives.

I have over 1,000 recorded data points just on my usage of pain medications and it’s correlation to my functionality. Despite my meticulous tracking and my adherence to protocols, I regularly have encounters with medical professionals that discount what I have to say. Like a founder I may be an expert on my “startup” but a physician or other expert has a lot more longitudinal data. The question ends up being do you as the operator (or the patient) have some insight the professionals do not? Honestly it’s hard to tell. Being wrong is pretty common. Doctors and venture capitalists know this. So do you as the patient or founder. Trust in these interactions can be low because of this.

Unlike with a company where you can walk away, being a patient means you are stuck with it. I have to work through the blocks as if I don’t I’m resigning myself to a life of illness. Which isn’t to say I can’t tolerate being ill and disabled, merely that I don’t believe that “this is as good as it gets.” I’m happy with my life but I do believe it’s within my control to do and be more.

For me this has meant juggling the pharmaceuticals that control symptoms but don’t heal me alongside an elaborate functional medicine and biohacking routine. I think of these drug for symptom regimens a cash flow business that can do well but will always remain the business that it is without a creative owner pushing for more.

I don’t want to just run my “business” even if it might be a self sustaining one. I’m at a point where yeah I can live like this for the rest of my life. But I want more than having a store or a service. So I test. And I experiment. And I throw tons of time after protocols and treatments that may be woo or bullshit. Or they may in fact be the turning point that lets me be more. And if it is then it’s all worth it. Much of what I’ve done has been worth it. But how the fuck do you determine that in a system that has so little interest beyond simple solutions like a pill? If I had the answer I’d tell you. Until I do I’m spending my time on machines that shoot electromagnetic pulses into my spine and glugging down micronutrient slurries. I hope the hacks turn into sustainable growth channels. But I could have just waisted a few hours on nothing. Until then I’ll record the data and hope the trend line reveals something.