Author: Julie

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Chronic Disease Chronicle

Day 115 and Physical Rehabilitation

As part of my commitment to quantified self and biohacking I have a physical rehabilitation protocol I cobbled together. Two years ago at the start of my autoimmune my journey I couldn’t walk easily. The ankylosing spondylitis manifested in my upper spine meaning I would struggle to get from my bed to the bathroom. I had to shower using a stool. I walked with a cane. This was not great for my cardiovascular health or my muscle tone. I was in this state for well over a year.

As the inflammation has become controlled in the past six months, I’ve been faced with a long rehabilitation. How do you build back stamina when even minor exertion was beyond one’s capabilities? As it turns out you do it one step at a time.

I’ve kept it simple. I get up out of bed every hour and take 250 steps. You’d be surprised how much a commitment to small consistent movements builds on itself. Once I got used to regular “get up” movements and pacing the room, I focused on adding small increments. Add in a hundred more steps at a time and now I’m comfortable hiking for an hour a day on flat or slight inclines. Thanks to a totally inconsistent stretching routines (a mix of Pilates and Alexander Technique) my muscles have retained mobility so that adding in more mileage has always felt comfortable.

I don’t have a program that is specific to rehabilitation though I suspect I should. I just committed to adding 5% a week more steps till I was able to walk 3 miles at a time or about 7,000 a day steps with a small amount of activity every hour. I suspect the regular activity each hour helps more than the steady state work but both add up to fitness gains. I have been adding in weight lifting and found that my strength is reasonably good. The real issue is that if I go to my full strength capacity I find myself struggling afterwards as healing and natural inflammatory processes are still a challenge for me. It’s as if the actual fitness isn’t the issue but rather my capacity for recovery.

Today I was able to successfully hike the NCAR trailhead in South Boulder. It’s a moderate intensity hike with some scramble and a gain of about 750 feet over a 3 mile circuit. What surprised me the most was that I didn’t have any perceptual issues with fitness. The exertion felt fine. The challenge was the occasional spike of pain. I wasn’t entirely sure if discomfort was a function of not being capable of managing the trail or simply that I’m still prone to system cascades. I can’t explain it any better than that. The trail was muddy and I lost my footing sending me into a fight or flight cycle that I needed to let pass.

Now that I’ve reached a point where normal activity is possible I need to find the next step in my cumulative rehabilitation program. The area where I can add 5% gains each week. If anyone has suggestions I’m open to it!

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Chronic Disease Chronicle Startups

Day 114 and Resistance to Change

Crash landing my life into a medical sabbatical really fucked up my headspace. Around two years ago I was beginning to realize I didn’t have a choice in accepting that I was sick. My identity as an always on, gets things done, reliable, entrepreneur got replaced by an entirely new self conception as “ill person” in a matter of six months. In August of 2019 I disclosed that I was officially sick. I sold my company and was going on leave.

It wasn’t a pretty adjustment. And I’m probably lying to myself when I say it took months to accept. I hated the new me. I felt weak and out of control. Willpower and muscling through did very little to help an autoimmune disease. If anything that mentality of “working on the problem” made it worse as I needed to rest and let my doctors do the work. I was resistant to change.

I think I’m going through a similar transition now as I did in 2019. I began seeing a new doctor in Colorado in October of 2020 and I made more progress in six months than I did in the previous two years. I’m beginning to face a new identity change as it becomes clear that I won’t be “sick” forever. While autoimmune diseases aren’t like an infection, there is no “cured,” it is beginning to look like I will be healthy enough to live normally. You won’t be able to tell I’ve got anything wrong with me soon.

And I have to admit to myself it’s a mindfuck. The emotional and psychological work I had to do to accept losing my entire identity is happening all over again. Who the hell am I if I’m not sick?

You see for the past two years I got used to explaining to people I was a sick person. I was disabled. I needed accommodations. I couldn’t work in ways I felt I would be reliable. I came accept my identity as someone with physical limits. And I slowly figured out ways to communicate that new reality others who has previously seen me as this abled person.

I guess you could say I was at peace with my situation. The pandemic helped. I know it probably sucked for you but I really enjoyed having a year of my recovery coincide with others having to live the way I did. I know it’s selfish but it helped! I felt less alone.

And yet just as I’m finally feeling like I really got a handle on my new identity it’s not my reality anymore. I’m not going to be a sick person. And while I thought I’d be overjoyed it turns out it’s a little more complex emotionally.

Let’s try a comparison. Imagine you broke your arm. You keep it in a brace and you can’t use it while it’s healing. And then the cast comes off and you are unsure if you can go back to using your arm like you did. You used to move your arm without thinking. You don’t worry about applying pressuring or picking things up before the break. But after it’s scary. You don’t want to set yourself back. You are scared to lift things and scared to apply pressure. I am in that place with myself. I know that the break is healing. The cast is off. But the muscles are atrophied and I’m not sure I trust that everything is knit back together. But the reality is that soon I’ll have the all clear.

But who I am now? I’m not the entrepreneur I once was. That workaholic Julie won’t be coming back. But the disabled sick Julie won’t be with me forever either. And I’m a little scared about it what’s coming. Who am I going to be next?

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Aesthetics Internet Culture

Day 113 and Competence

I’ve never found it amusing to watch people be incompetent. The fool isn’t funny to me. Television shows with shitty protagonists who can’t do their jobs, and don’t care, make me sad. I don’t find The Office enjoyable. I never understood Arrested Development. I didn’t even attempt It’s Always Sunny in Philadelphia. The shows I gravitate towards are the ones where people want to make good things. Where the competence is the point. Shows like The West Wing, Star Trek, Mad Men, or The Expanse, where striving to be better is either the core virtue or the central tension.

I hate watching dysfunctional workplaces. Shows where the protagonist is fighting against bumbling bureaucracy don’t inspire laughs for me. They make me want to avoid ever being in a large organization. I still fear organizations like Human Resources. The pop culture obsession with being a knowing cynic makes me despair. How is it better to know something sucks, but rather than try to make something better, you laugh about how it all sucks? It’s not fucking funny to me. It’s sad.

I don’t know when America culturally made the transition from believing those at the top had earned it to knowing it’s all a charade but it certainly wasn’t in my lifetime. When I came of age Clinton was already a liar. We knew the history of Vietnam and Watergate so why anyone gave a shit about a blow job was beyond me. The trend only continued with the aftermath of 9/11 and our forever wars. The Obama era seemed like it provided a reprieve for people at least pretending like achievement was a virtue but the backlash was so severe I worry that was actually a fantasy.

I wonder if the “fool” or the jester archetype has become our default aspiration. If entertainment has decided its simply more appealing to play for laughs than the boring tedious reality of building stories around competence don’t get made. We don’t see the inspiration of good work.

Which sucks as being competent feels amazing. Sure I play for laughs and shitpost on social media but I want to assure you that none of that feels as good as doing work well. I don’t care what kind of thing you are making. It can be a meal or a billion dollar company. The satisfaction of competence is deep. No laugh I’ll ever get from a shitpost will ever feed the soul like a real achievement. A sincere creation hits different. Not to say that humor has no plays or that a shitpost doesn’t have virtue (I will and have gone on at length about the creative necessity of shitposting), but that being a fool isn’t the only enjoyment in life. The enjoyments I relish most are where I’ve shown myself to be competent. And I like watching others be competent as well. So please share your accomplishments with me. Even, or especially, the small ones. I think it’s just great.

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Startups

Day 112 and Unknowability

Human minds seem to prefer predictably. The back brain craves knowing what is coming even as our flighty consciousness seeks novelty. Talk about a tension that sucks. We’ve all seem just now much this is a recipe for misery when you live in a world with no predictability but easy access to low stakes novelty during the pandemic. We are twitchy, bitchy and miserable as we have no idea what our world will be like but we can dopamine drip our pleasure seekers with social media, food and substances for an enjoyable now.

I’ve written at length in this experiment about my frustrations with unreliability especially when it comes to my own body. It’s one of the hardest aspects of managing a recovery from an autoimmune disease. I need to be mentally strong enough to not let bad days shake my routines so I keep building towards the wider goal. I can’t be distracted by one data point. It’s about movement towards the goal. Ironically this is a skill I learned from startup life.

While the entire planet is getting a crash course in unpredictable futures now, startups are defined by their desire to solve problems that don’t yet have defined solutions. No one in a startup knows if the predictions will be right. If they are working on something that will have the intended outcomes is unclear. You work on faith. You trust that over a longer time frame the daily tasks and routines you push (sometimes we give them dumb names like OKRs to fake a sense of control) will actually get you where your mind’s horizon sees.

I sometimes wonder if those with religious faith would do better on average in startup life. We have some degree of comfort with the inscrutable. Mysteries are sources of joy rather than fear. We trust that there are things beyond our knowing and our control and yet we must live on despite that.

The obsession with data and trend lines and the potential for prediction, surety or knowing amuses me. Sure sometimes you can plan a lot. You should plan. You have some inputs that consistently deliver the predicted outputs. Your best guess are better than other people’s facts (thanks Spock!) But if it were all so neatly defined there would be nothing new to create. We wouldn’t be able to build value. It’s the undiscovered country that we seek.

In faith, in life, and in startups you must manage your squishy human mind that is constantly tortured by its own biology. We want to know and we want it to be predictable. But we also love the tickle of a new experience against our dopamine seeking biology. The spike of pleasure we find pleasure in the newness. That’s why we do it. And it’s on us to balance the tension between our need to predictably build and our addiction to novelty. Manage that and you may get far in your journey. Or it’s a miserable sine-wave that makes you nauseous as you go up and down trying desperately to bring the future forward between impulse and planning. It’s usually both if I’m honest. So if you don’t enjoy roller coasters I wouldn’t get on this ride. But if you do well you just might see God.

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Internet Culture Media

Day 111 and The Attention Economy

I like media. When I first moved to New York I had big dreams of getting hired to work at Condé Nast. This was almost immediately crushed by the reality that I was of average financial wealth (I moved to the city with about $500 and lived in a women’s SRO), not from a noteworthy family and notoriously poor at respecting authority.

But I was lucky enough to arrive in the media capital of the world just as blogging was turning into a cultural phenomenon. So it turns out I didn’t need to work for some bitchy queens to get a toehold in the industry! I was also wise enough to realize there was absolutely no fucking money in media early on so I watched many of my peers climb the ladder in new media jobs without being a member of the media myself.

I found ways to make money on marketing, branding, e-commerce and new media businesses. It was a lot more lucrative. Consequently I now have a large number of media friends (disclosure time) without any of the cultural baggage of being in media. Unless you count the time I was the first person to livestream fashion week. Which I didn’t technically have credentials to do but it got covered in Women’s Wear Daily.

I’m really grateful I never got suckered into actually being in media as I’d probably be broke, miserable and exhausted. And then if I admitted I was exhausted I’d have a bunch of the older generation of media folks dunking on me for saying that. Which is how I got into a shitposting thread with Glenn Greenwald today. Who I think might actually be in on the joke about grifter click culture.

If you don’t work in media I think you’ve got an inflated sense of their power and independence. It’s actually hard to make any money so you are always living at the whim of executives and editors. Most of them got into the business to tell crucial stories (naive but like good) and are stuck living at the mercy of a business that isn’t that lucrative.

A lot of bad faith arguments get made equating institutional power to individual power, and while it’s true having the power of the New York Times behind you matters, it’s also true that any random blogger like me has more freedom to pursue ideas than a staffer at a newspaper. So I think it’s sort of a reflection of insecurities anytime anyone gets worked up about media power. Especially if you know better as some of the older media folks like Greenwald do. These beat reporter exist in hierarchies with bills. They don’t have the freedom to shitpost like me or Glenn Greenwald. We are wealthy and independent. Beat writers are fighting constant turf wars just to stay employed.

It can also be true that beat reporters have to fight a constant battle for attention and clicks in order to stay employed. This means we get culture warriors and posturing. But both sides of each debate are engaged in a kind of elaborate attention grift. So when Taylor Lorenz or Glenn Greenwald or Matt Taibbi sucker you in with a position on who is most virtuous the answer is whoever pays them. And guess who is paying? You and me. Our attention is getting monetized into all kinds of nifty revenue streams. I know this because that’s how I make my money. So next time you get worked up about the evils of media asking yourself why you are paying attention and who is benefiting.

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!

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Chronic Disease Chronicle

Day 109 and Medical Outliers

Watching the frenzy around vaccines has been an emotional experience for me. A lot of people are making assumptions about the private medical decisions of others. I’ve been watching friends “believe science” and discuss bonding over their jabs. And I’ve been watching friends caution that perhaps we should keep an eye on the long term effects of novel therapies and weigh the costs. The most frustrating aspect has been that everyone assumes that I am on their side. That I’m normal enough to have an opinion that is based on political affiliations and not one informed by my status as a medical outlier.

I guarantee you that my feelings on medical procedures are more complex and nuanced than any zeitgeist narrative thanks to being a medical outlier. As I’ve watched worried well and vaccine skeptics look to bond with me (especially those concerned about side effects or long term impacts) I find myself frustrated. It’s not that likely your concerns are mine. The chances that you as a healthy person with maybe a few issues are also a medical outlier in the way I am is unlikely. Like trust me you’d know it. You’d know if you were actually unusual. It doesn’t fucking sneak up on you.

I’m literally outlier. By definition I’m at the fringes. It’s not a surprise when shit goes wrong as weird medical shit tends to let you know. It’s not a vague concern about something that might happen. I’ve got blood work and specialists. I watch my markers like a hawk to see how much we much we push my immune system quarter by quarter.

I want to discuss my decisions for my own safety and what I’ll be doing but it just doesn’t seem, well ironically, safe. Too many people are too polarized and frankly paranoid. Most of you don’t have to worry about the stuff I worry about. It’s just not that likely you are going to experience the kind of autoimmune system cascades that are a real risk for someone like me. It’s a one in a million kind of thing. So equally it’s possible what is very safe for those millions is a risk for me. I wish it weren’t.

So I would ask folks to please take some care with privacy and respect when discussing medical conditions with anyone. Especially if you know they have something complex or long term. Other people’s assumptions about what I can or cannot do makes me feel alone and sad. Don’t let your politics or your fears invade the space of others who may not be so lucky as to have the same choices and opportunities. I promise we really appreciate the empathy and kindness.

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Chronicle Internet Culture

Day 108 and Energy Vampires

Recently I’ve been watching a mockumentary about vampires living in Staten Island called What We Do in The Shadows. It’s surprisingly funny for what you’d imagine is a set of basic gags. My favorite running joke is a type of vampire called an Energy Vampire. Everyone in the house is your standard drinks blood loved forever vampire except “Colin Robinson” who is an energy vampire. He lives forever by draining the life force out of people. It’s the most common type of vampire.

As you probably guessed Colin Robinson is meant to remind you of vampires you probably have in your own life. The show runs heavily off “boring” jokes but the real kicker is how energy vampires are perpetual victims. Colin Robinson is always sucking you in with pity and apathy. Energy vampires prey on your emotions.

As you might expect they have an episode about social media and Colin Robinson gluts himself on the low quality but copious amounts of energy available. There is also a troll joke. It’s pretty funny because it rings true. One accidentally viral tweet and suddenly your energy is being sapped by a crowd of vampires. The extremely online eventually pick up some Van Helsing skills to keep their energy from being drained. I like to think I rarely spend time online without my garlic, holy zingers and reply through the heart stakes.

The real issue is when you discover you’ve got an energy vampire in your real life. I recently realized someone was draining my life force. I thought they were a friend but a set of misunderstandings I finally realized they’ve been sucking me dry for years. They are pretty good energy vampires as I actually thought I liked them quite a bit. It took one overdrawing of my energy to wake me up to the reality that their tactics exhaust me. With the energy vampire metaphor you can enjoy a laugh as to whether this behavior is malicious or not. Energy vampires need to feed! But the end result is you feeling shitty.

As much as Colin Robinson jokes amuse me I do think I need to keep my energy vampire away. Their last feeding left me feeling tired and obsessive. I let the shitty feeling they induced in me upset other people close to me. And that’s just fucked up. Then energy vampires get even more energy. So I’m going to try to keep them at bay. I don’t need to prolong the life of someone feeding on me and I certainly don’t need to waste my boy immortal life as someone else’s emotional food.

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Chronicle Politics

Day 107 and Mountain States

My family made its way to Colorado in the 70s. That makes my brother and I second generation. While we may not have deep roots it’s not arriviste either. This is a concern as roots matter now. Every western state seem to worry about the influx of Californians on their culture. My family participates a bit in this too. Despite me having spent the last 15 years in Manhattan I have plenty of opinions about policy.

So I was fascinated by a series of essays showing what was driving the changing demographics of mountain states and who are actually the California carpetbaggers.

The thesis of the tweet storm by David Neiwart that drew me in was that Tucker Carlson and the recent obsession with replacement theory (in this case Mountain state “natives” are being replaced by liberal Californians but it’s actually code for brown people) was actually ass backwards. It’s the white evangelical population who have been moving from California and resettling in the mountains West. The actual demographic taking space from folks already there isn’t California liberals it’s California conservative!

In Colorado the urban areas of the front range won out over the deep red of the western slopes. Other states in the mountain west may have gone red but we managed to be purple without turning into a California hellscape. So our influx of red have blended with new urban blues for a relatively well governed state.

I do find the entire crisis over those coastal elites coming into the mountain states to be pretty funny. As if the politics of the west were ever really totally homogeneous. Plenty of towns have been liberal and we had Democrats and Republicans representatives. This need to always push narratives of polarization doesn’t do anything for the American people. It’s just more bullshit to entrench for us in our corners.

My politics are traditionally Western states. I’m a small government libertarian and I’m also inclined to let people to do what they want with who they want. Going too much to either side just doesn’t appeal to a lot of mountain state folks. I won’t vote for the Republicans till they drop the fascist populism so while I’m not thrilled by Democrats they have my vote for the moment. Maybe the western states are the moderates we thought were a fantasy all along.

Categories
Chronic Disease Chronicle

Day 106 and Perceptual Drift

I often find it easier to talk about the darker parts of my journey from chronic disease once I’m already through the worst of it. If you are hearing about my long dark night of the soul it’s probably because I can see dawn breaking.

Maybe it’s because it’s hard to discuss the challenges when you are in the thick of them. Having any amount of perspective when life is at its worst is a skill reserved for religious scholars and internet advice gurus. The rest of us just try for hindsight being 20-20 at best. I admire the stoic philosopher types but I’m generally just happy to be able to survive rough days with a minimum of pain and angst.

It’s likely this tension between a better current reality and the heaviness of past challenges that made me so confused by the reaction when I posted about the envy I felt towards people who live healthy normal lives. A number of people checked in on me worried or concerned about how I was doing. I didn’t get it. I had just been discussing how well I’d been doing so why was everyone offering to pray me me?

I’d come to terms with some of the sadness and anger I’d felt during the worst days of my illness because I was doing well. I’d been posting about how excited I was that I felt great, had clean bloodwork, and was seeing better days. It was because I was doing so well I decided it was best to ruminate on the challenges I’d experienced. I was on the other side of it. Feeling well and energized meant I had the capacity to explore the dark places. When I’m actually in a dark places usually all I can do is survive the experience.

But I get that others didn’t see that now. They saw darkness and sadness and reach out to me with kindness. The love and support from people close to me and the messages and prayers from my internet friends all added up to me feeling like the good times will just keep getting better. If you are reading this I encourage you to share your journey. You just might get back the same love that I got. People are great that way.