Tag: Chronic Disease

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Biohacking Chronic Disease

Day 463 and Caretaking

My husband has a a weak immune system. He used to get colds once a month or whenever he would travel. I, on the other hand, have a wildly overactive immune system. I never get colds.

His immune system doesn’t fight shit off well, whereas mine seemingly never ever stops reacting. I have an auto-immune disorder which is marginally worse than getting colds so on balance Alex does more caretaking of me than I do of him. But it wasn’t always that way.

I used to take care of his regular colds when we first got together. When he married me and we lived together, he slowly absorbed my overly active immune system, eventually cutting down on his colds to a couple times a year. And yes this is weirdly a thing that happens. Your partner affects your gut biome. My health sadly got kinda worse over the course of our relationship. I doubt Alex’s shitty immune response made my life any worse (if anything I would be thrilled for mine to chill out and I take drugs to subdue it) but arguably him getting my overly active immune system has done wonders for him.

I stopped being a caretaker for him. He became a caretaker for me. It was an interesting transition I didn’t really clock at the time. Alex was used to constantly being sick for years but through exposure to me he kinda forgot how much it sucks. This was further exacerbated when the pandemic hit and we stopped being exposed basically any infections.

Alex went two years without a cold. It was miraculous! Alex really enjoys his identity as a health person. Hell he thrived as an active Colorado outdoorsman in a way he never did as an indoor New Yorker. But travel and life is rebooting and it would seem Alex’s old weak immune system is so out of practice it doesn’t do well with crowds and travel and public appearances. We’ve been in Miami less than a week and he’s sick as a dog. Thankfully it’s not Covid. But guess who got to remember what it was like to be a caretaker again? Yeah, I’m responsible for Theraflu and nose spray. I didn’t do any of the conference I’d planned for the day and had to cancel on a bunch of plans but honestly it’s not so bad. Caretaking is an act of love after all.

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Travel

Day 458 and Jet-Set

I forgot what a pain in the ass it is to be on the road. I had three days back in Colorado after my trip to Frankfurt before I found myself repacking my suitcases to head to Miami. I probably shouldn’t have bothered unpacking in the first place.

I had a whirlwind of doctor appointments, injections, pharmacy runs and visits to various health care practitioners in the three days. Any kind of chronic health condition is a bit of a bad bed fellow with travel. Especially if you have medications that are controlled or require refrigeration. I’ve got both. So I timed my sojourn in Colorado to align with those pick ups and injections.

But that left me precious little time for other daily life type activities. I managed to sneak in a pedicure yesterday and it felt practically revelatory. But I’ve got so many other things to catch up that I’ve got no choice but to find a way to maintain normal life while on the road.

I have a round of blood work I need to get done before my next round of doctor appointments next week. Maybe I can get them down in Miami? They probably have quest labs. Doing a fasting lipid panel in the land of retirees seems kind of appropriate.

And while this may sound kind of stupid I really need a haircut. I just a point where it just can’t be put off any longer. It just started to look rough. So why not get it done in South Beach? It isn’t as if I’ve got a stylist in Boulder I love.

The muscles that come with life on the road are surely coming back if I’m considering things like blood work and haircuts. It isn’t the most glamorous part of being “jet set” but it sure as fuck is the most realistic. Travel has its own glamour and romance but you are never as far from the reality of your own life as you think. And maybe that’s a good thing.

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Emotional Work

Day 457 and Pedicure

I did something today I haven’t done in two years. I got my nails done. And it felt so luxurious and yet also somehow normal. This regular act of grooming had once been a staple self care activity but today felt transformed into a ritual of joy.

I feel free and lucky in this moment. Getting a pedicure done means I have someplace to be where someone will see me. It means I am healthy enough to be going somewhere. It means I have a desire to be somewhere. All this cascading luck mixed to show me that my life was ok. I felt so much gratitude and self love in that moment. I am ok. The ok-ness of the universe in an act.

I know it sounds heady and existential and also a bit ridiculous as I elevate the act of a pedicure. But truly I feel so good about where I am in life that I can get my toes painted coral.

Also it’d worth noting that less glamorously cutting my toenails is hard for me to do on my own because of my spondylitis. So a necessity and a luxury in its own physical way. It is a quality of life improvement. So I’m grateful that this is where I am. May we all get little joys of normal in this chaotic world.

Categories
Chronicle

Day 449 and Lost Time

I lost some time this week. I was living on someone else’s schedule and it cascaded into a wash of hours where I felt like I was completely out of sync with the wider world as I struggled to get back in my own time.

I’m not at my best when I have to push myself to live on other people’s time. Everything shrunk down to my bedroom and my body and my own myopia about righting my sense of reality. I was in a lot of physical pain which pushed me mentally as well.

I started to feel genuinely better and on track around 5pm in Frankfurt. Technically that meant I still had a half day in California to work. But I’d lost the will to push. I needed to regroup. I am telling myself that it’s ok because it’s not as if I work a standard 9-5 job. I can take the weekend to find my way back to the timeline. And if I’m honest some of my best work gets done on Saturday night.

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Emotional Work

Day 448 and Disappointment

I’m feeling disappointed in myself. I want to shake the feeling as I’ve done nothing wrong that warrants punishment. But the feeling of disappointment is lingering which is a double cruelty I’m perpetuating on myself.

I have been pushing myself physically. I know this has consequences. And yet I’m frustrated by my body reacting exactly as I know it will when I run myself down. And worse than that, I find myself negotiating with my body to justify pushing just a little bit more. What if I take this medicine? Will that buy me more time? How dangerous will it be if I just keep ignoring how I feel so I can push a little bit more for a little bit longer? I’m rationalizing what amounts to self harm all because I want my body to be something it cannot be.

I feel like I should know better than to be so cruel to myself. I should let it go of the foolish need to push. What I need is sleep and my routine. I should take my medicine and instead of using the feeling of relief it brings to push, I should use the relief to rest in comfort so I heal and recover.

I hate that I keep relearning the same basic lessons of chronic disease over and over again. But hating myself for being disappointing is of course the pattern I need to break. It defeats the point. The self is not an attack surface. Being disappointed serves no purpose in this moment. It’s not driving me to be better. It’s driving me to be worse. So I’m letting it go. And I’m hoping tomorrow I’ll go a little easier on myself.

Categories
Chronic Disease Travel

Day 440 and Twitchy

Last night I had a poor night of sleep. My body was just all kinds of weird. A muscle spasm thing kept me awake. I tried magnesium (it’s a natural muscle relaxant), several rounds of Theragun routines, a few stretches, and finally actual muscle relaxers.

Nothing stopped the weird twitching. It was 2am in Germany so I was resigned to a bad night of sleep. I just laid in bed waking myself up every couple of minutes. It was exhausting.

Eventually I got to sleep and seemed to wake up in the morning no worse for wear. I wasn’t especially alarmed, as my body has a tendency to just go off on weird physical tangents for no reason. Whatever the fuck happened it seemed to have passed so I went about my work day.

I broke for dinner around 6pm or so. I ordered Ethiopian and chowed down hard. I was feeling full and sleepy and I figured I’d lay down to digest a bit. I put on some television and was promptly out like a light. I woke up two and an hours half later and realized it was probably time for me to call it a day.

I swear the only thing that woke me up was the knowledge that I had to write my blog post for the day. I’m mostly kidding. The heater turned on and roasted the room so I needed to open the window. But now I’m absolutely going back to sleep now.

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Chronic Disease Medical Travel

Day 437 and A Mood

I’ve been struggling with allergies ever since I arrived in Frankfurt last week. The stress of travel and the constant itching affect my mood more than I’d like.

It’s a weird situation if I’m honest as I’m so happy to be traveling and on my own after two years or being in the same place and with the same person. I love my husband and I love my home but I’m sure everyone can relate at the end of the pandemic for the need to be alone.

My mood has largely been buoyant except for the constant low level misery that is these damn allergies. My eyes water. The skin around them is red and raw. My skin keeps finding new intermittent patterns to express hives and eczema. And I’ve built up quite a tolerance to Benadryl.

The allergies stress me out and then my spinal pain worsens and then suddenly I’ll find myself in just a miserable sad mood. I’m grateful I can write it all down so I can get the mood out. I just want to be comfortable in my own skin and smiling again.

Categories
Biohacking

Day 434 and Taking a Toll

I’ve been feeling engaged and energetic. The combination of a new environment (I’m in Frankfurt) and one of the most dynamic & chaotic investing environments has had me on focused.

But it would seem that my body would like me to maybe take a step back from from the current moment and care for it. As you may know I’m an avid biohacker. This is a screenshot from my Welltory HRV app which is part of my stack. And it is not thrilled with now I’m coping.

That means I should go to bed early and maybe take a day or two off till my metrics improve. So I’ll keep this post on the short side.

Categories
Medical Travel

Day 428 and Allergies

I’m staying in an Airbnb while I’m in Europe. I genuinely love the application and it’s community. I was an early adopter of Airbnb. Thanks to Airbnb I saved 60,000 dollars in one year. That cushion allowed me to quit a corporate job and pursue a startup without any anxiety.

My love for the application is pretty deep. It’s responsible for my marriage in some ways. I would only rent if I had another place to stay that allowed me to turn a profit. That usually meant I would rent while I traveled or if a friend has a place to crash. Alex was fascinated by my side hustle immediately. We’d only been on a couple dates when he offered to let me stay in his apartment while he traveled if we split the profits from my Airbnb. Naturally I said yes. I never moved out. And yes now we are married.

So yeah I really love Airbnb. But you do need to be aware of the community’s idiosyncratic norms. You are staying in someone’s home. That’s part of the charm. But also can can occasionally turn out in unexpected ways.

Since I arrived I’d been struggling with allergies. I broke out in hives. I had to figure out acquiring hydrocortisone in a foreign language. I was popping Benadryl like candy so I could barely stay awake. I was getting a little desperate to be honest. So I went on a long walk. Everything cleared up. I returned to the apartment and immediately started breaking out in hives again.

I texted my host to ask if he has any ideas. It turns out the host of my Airbnb loves scented candles. And he’s got great taste. The apartment has tons of candles and diffusers. But he’d put them into a cabinet so I didn’t know they were there. Alas I am extremely allergic to the chemicals that are often used in scented candles. Limonene in particular. So my body was going haywire over these candles but I had no idea they were there.

Thankfully we figured it out and moved them outside. But it’s a good reminder that context matters. At an Airbnb you are in a home furnished by a person with different needs and tolerances from you. And that’s ok. We figured it out. But me being upfront about my allergies from the start might have saved me a day of misery. Lesson learned.

Categories
Internet Culture Medical Startups

Day 415 and Accessibility

I don’t think of myself as disabled or requiring special accommodations, though I have a well controlled medical condition that swells my spinal cord called ankylosing spondylitis. But for the first time since my diagnosis I really felt like I was handicapped. And I am feeling so much sadness over the idea that I might genuinely be disabled.

I’m attending ETHDenver and it’s wildly over capacity. No consideration has been given to any kind of basic accessibility. I didn’t think it would effect me though till I got here. I can walk without a mobility aid and if you met me you’d never know I have an issue. But I can’t stand in line on cold concrete for two hours. It turns out I would need a wheelchair for that kind of activity. And even if I had a wheelchair the first two days were in the cold and snow so I couldn’t have wheeled over or around the slush and water.

So I have only attended private parties and small events and group outings. This is great for me as I’m a well networked established member of the startup ecosystem. I’ve got a popular Twitter handle and can easily reach out to people. But I’m noticing just how much a bit of inaccessibility will gatekeep the crypto and web3 community. If you don’t have my heaps of privilege there is no way you could navigate this conference.

And we really need web3 to be welcoming and accessible. To build a better future with infrastructure and economies we all collectively own and benefit from we need an order of magnitude more people participating. But if no one can get in and experience things first hand than web3 will just be a repeat of the oligarchy of web2. It’s honestly my worst fear for crypto. We will accidentally exclude the people who will benefit the most from our innovations.