Category: Chronicle

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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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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.

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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.

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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.

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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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Chronic Disease Chronicle

Day 103 and Regret

It’s culturally acceptable to say “oh I regret never having children” but somehow we rarely hear the opposite. I understand that parents who regret having children do not want their children to feel unloved. For that reason perhaps it’s the kind of feeling you take to your deathbed.

Or you post anonymously on Reddit. But for the sake of children feeling loved and wanted, I do think we should discuss it openly and in public with more honesty.

At this point in my life I don’t think I feel joyful about having children of my own, despite having pursued fertility treatments (which if I’m honest about was partially an insurance policy to let me put off the decision). If I have a child, I will need to resolve my anger and regret about how egg freezing lost me a decade of my life. It sent me on a path of severe chronic illness and I wouldn’t want my child to feel that my anger about being sick was ever any fault of theirs.

And maybe this is why we have no cultural space to discuss regret. We don’t want our kids to ever have access to the complex feelings we have as humans about our anger or sadness.

Imagine how a child could extrapolate feeling anger at a sickness that was related to their conception. Jesus fuck. I don’t think I’d regret having children. If I ever bring my health challenges up, I ever hear is “you will regret it if you don’t take the risk to have them” which just isn’t that helpful.

But you know what isn’t helpful? Never discussing regrets till it’s too late. Till you are doing something because it’s culturally normal. What kind of bullshit is that to put on a child? “Mommy got told that she’d regret it if she didn’t have you.” That seems like a recipe for Mommy very much regretting her decision.

I pray that the hormones that bond us to our offspring work well enough that no parent or child is ever put in this position. I pray that evolutionary instincts make it so unlikely that one regrets having children.

I worry some people simply didn’t want to have children but the expectations of life and culture didn’t make that feel acceptable. I hope more people talk about that fear. I don’t know exactly how I feel but I do know that no one should do shit on the advice that “they will regret it if they don’t.”

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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.