Tag: Health

Categories
Biohacking Chronic Disease

Day 287 and Routines

I haven’t figured out how to incorporate my routines into my busier workdays. I feel like I’ve written this blogpost at least 3-4 times but somehow I never seem to find balance easily when I make big changes to how I spend my time.

All the self care efforts that has become comfortable rhythms go by the wayside as soon as I add in new obligations. And then my body gets pissed that I’m not taking care of it and I get into the same pattern of two steps forward and one step back.

You’d think after experiencing this issue multiple times I’d be better at ramping change slowly but I remain the sort of person that loves to dive into shit head first.

After much enthusiasm and progress I’m writing todays post from a physically mediocre places. My stomach is upset. I am fighting off a migraine. My muscles are tense. I’m anxious about all of these symptoms turning into a messy cascade. So I’m turning to my pharmaceuticals, taking a mess of prescriptions, and going to bed. Maybe tomorrow is another chance to find a better balance.

Categories
Chronic Disease Preparedness

Day 286 and Appointments

I’ve been going to a bunch of appointments in the past week or so. And I’ve got a bunch more lined up in the coming weeks. My calendar is a mess of obligations; optometrist, dentist, gynecologist, and the hair salon for starters. I feel like I’m drowning in appointments.

I made the mistake of not capitalizing on the last dip in case numbers in the late spring and early summer and missed the pandemic window before delta. I didn’t want to make that mistake again so I’ve been hustling to have the appointments that I’ve been putting off for the last 19 months. Check my eyes, check my teeth, check my fiddly bits. And yes cut my hair. God is my hair long.

There is so much maintenance work that has been piling up that I wonder how I’ve made it through the entire pandemic putting all of these life chores off. Has everyone been putting off their appointments? Was it just me? Or is it just people who are still trying to limit their exposure to infection?

I grant I’ve got a very different risk profile than the average American but I feel like it’s probably not unusual to put off stuff you are supposed to do but can probably live life without. But should you? So far no one has found anything wrong but maybe it’s just luck that I could go for two years without someone checking my tits or my teeth.

I didn’t put off any of my truly crucial health appointments over the pandemic but I am sure other people did. The eye doctor is something I tell myself I can put off for two years but maybe that’s a rationalization. Did others do that with annual physicals? With breast exams? What else have we been putting off in our appointments. It feels like I put off my entire life. And now I’m scrambling to fit it all in before something else has happens.

Categories
Emotional Work Internet Culture

Day 283 and Presencing

Nick Couldry uses the term ‘presencing’ in his book Media, Society, World to talk about how we go into digital or media spaces to manage our presence over time. It’s a way we cultivate a sense of wider purpose through a public presence. And because of the way suffering and trauma marginalize people, this act of making yourself more visible is even more important.

I was browsing Anne Helen Peterson’s newsletter Culture Study when the above quote hit me over the head. The interview was on the topic of ambiguous grief with a media studies professor Samira Rajabi. While the writing is almost uncomfortably academic it resonated with me immediately. I have been engaging in presenceing for the entire course of my illness. I just never had a name for why I felt like a public presence mattered to me.

While it sounds unbelievable, I never considered that I might be using social media as a way to give myself visibility in the face of the trauma of an extended and chronic illness. I’ve always been a heavy user of social media so I didn’t find it unusual that I spent significantly more time on Twitter and blogging as I went through the diagnosis and recovery process.

I had been used to being visible in my previous life. I was regularly in media for my startups and I had cultivated some amount of public presence on and off since I was in college. But I didn’t really become a Twitter personality that cultivated a presence and interactions and a voice until I got sick. Without knowing it was presencing myself.

In American culture in particular, there is a strong preference for triumphant stories. So we can conceive of suffering if it can be managed and overcome, but rarely do we know what to do with a story of chronic pain and suffering and how relentlessly it reminds a person that they no longer fit into the so-called “normal” world. To me, it becomes even more important for those people to be seen.

I really wanted my story to fit into a narrative when I first got diagnosed. I had all kinds of ambitions of overcoming and healing that were quickly dashed on the reality of my life. I was never going to be normal again. And I hated that. I still find myself overcome with grief at the prospect that there is no triumphant return.

But I want people to see that grief. And see that it’s alright. That life went on. I didn’t lose myself. Even in pain and illness, or perhaps because of it, I’ve gained ground in finding myself. The pain and degradation of illness is ugly and shitty but also powerfully transformative.

I have not given up just because the narrative isn’t clear and the story has no simple arc. Any impression we have that stories have structure is imposed in hindsight. We love our post-hoc rationalization. We love our pattern recognition. But the through line is never clear in the moment. And that’s why presence matters. We all need the visibility of the truth even if it doesn’t fit neatly into the story our culture has given us.

Categories
Chronic Disease Emotional Work

Day 267 and Morally Neutral Accommodations

I resisted the idea of investing in a zero gravity chair. Because of my spinal condition, I find it more comfortable to work for extended periods when laying flat. Working from bed isn’t exactly ideal, emotionally or practically. And yet I wasn’t ready to sink a significant investment into my work station. Thankfully I ended my procrastination this week with the arrival of my new altwork station.

Altwork desk in a zero gravity position

It was a significant expense but I can now comfortably spend a full workday in a chair without any adverse affects. The only downside appears to be good old fashioned tiredness at the end of the day. I’m thrilled with the investment.

I wonder why I resisted the idea of investing in a comfortable desk for as long as I did. Maybe part of it was shame that I needed what felt like such an extravagant accommodation. I didn’t feel like I was worth it. Or perhaps I felt a disability isn’t something I wanted to invest in. It was something I wanted to invest in overcoming. Spending money on making my life more comfortable and functional with my disability was hard for me to swallow.

I felt if I worked hard enough at managing the symptoms of my ankylosis that perhaps eventually I’d be able to manage sitting at a regular desk for a full work day. But what kind of fools errand was I setting myself on that I desired not only discomfort but to work myself up to enduring even more discomfort? My goal was to make myself uncomfortable.

I’ve long frustrated my doctors by resisting pain management medications. I tell myself I should grin and bear it when it comes to pain. I treated pain as if it were a moral good. I suspect I was doing something similar with resisting a comfortable chair. I’ve got a problem with equating suffering with morality.

Thankfully I was able to set that aside and buy the zero gravity chair. Now rather than suffer and tell myself I’m a better person for it, I’ll actually get my work done in comfort. Which should have been the goal all along.

Categories
Aesthetics Internet Culture

Day 264 and Shiner

I’ve been eyeing the full recline zero gravity chairs and desk combinations for a while. Because of a spinal condition sitting upright at a regular desk is tiring for me. It seemed like an extravagant purchase as they are well over $4000 at a base model but being able to spend a full work day in comfort reclining seemed worth the investment.

The Altwork chair and reclining desk

Last week I finally decided to pull the trigger and buy the chair on the advice of executive performance coach Dr. Julie Gurner who helped me see that investing in an environment that accommodates my physical needs is worthwhile.

Today was set to be the big set up and reveal day but in the excitement Alex was trying to take a picture of me laying flat while working and he dropped my phone form about three feet over my head onto my right ocular bone. It hit so hard it formed a blood bruise immediately. It was such a shock I didn’t even yell. So rather than playing with my new desk I’m icing my face.

Blood bruise from a phone hitting my face while photographing my new chair.

It hurts like hell. My face is swelling and I’ve got that jumpy nerves thing that comes from a physical trauma you didn’t see coming. So tomorrow I’ll finish setting up my new workstation. Right now I’ve got to stave off a shiner.

Categories
Chronicle

Day 253 and Lady Troubles

Occasionally I find myself annoyed that women’s bodies are less studied than male bodies. You’d think we’d want to know more about the vessels that produce the heirs to make fortunes. Grumbling about mishandling property rights aside, I do wish we knew a little more about women’s health.

I get migraines when I menstruate. If that particular tidbit of information is too much for you well sorry but maybe it might be helpful if the basic biology of women’s bodies were a little further to the forefront of cultural consciousness. Women talk about it with each other which is why I’ve got a host of folklore on cramps, bloating, headaches, sore breast, and emotional rollercoasters.

I’m fairly lucky to have migraines. It’s marginally more pleasant than what my friends with heavy flows or bad cramps go through. And I say this just having vomited from the nausea that comes with my migraines.

And on that note I’m signing off as I only went on a tangent about the need for more effective study and treatment of women’s health as it’s the only thing I can think of to write about. And I committed to writing something every single day. So here I am writing through the migraine. I bet tomorrow will be more interesting. And I’d be thrilled if later in life we solve for the interplay between hormones and headaches so I never write about this topic again.

Categories
Chronicle

Day 249 and Vacation

The last vacation I went on was a long weekend to Miami in early February 2020. I had been following the outbreak as it unfurled in Wuhan at the time but it was before covid19 became a pandemic. It didn’t appear as if it had made it to America at that point. Three weeks later and I began locking down.

I remember having a terrible migraine on the second day of that vacation. It has been a question as to whether I was healthy enough to travel. We were still stabilizing my ankylosing spondylitis but we hadn’t been on a vacation for over a year at that point as I had spent the summer and fall in and out of hospitals. So we risked it. It seemed like we should at least try to take a vacation. Even sick folks deserve a break.

I took a picture of the darkened bedroom while I rode out my migraine in Miami

In hindsight obviously I’m glad we took a chance and went to Miami. Even if I spent a day of the trip in a dark room. As much as I was early on the pandemic, I didn’t fully appreciate that it would be so long and so restrictive. Even being able to be in a cold hotel room nursing a migraine was an unimaginable luxury for most of the pandemic. I’m so grateful we took that last trip. Sure it doesn’t look particularly exciting but to me I see it as the last time I felt safe traveling.

Now that I’m in Colorado, which is it’s own vacation destination, I don’t feel as much of an urge to get out of town as I did living in Manhattan. Sometimes you do really need to escape from New York. But no one needs to escape from Boulder.

Yet right now I am craving a vacation. I want to feel a change in routine. Hell a migraine inside a hotel is still more exciting than a migraine in my own bedroom. I’m not likely to get on an airplane as the cases are a mess but maybe its time to go somewhere. I hear Aspen is lovely in the fall.

Categories
Chronic Disease Emotional Work

Day 248 and Trusting Nothing

I am learning to appreciate the value of doing nothing. I have always struggled with the human “being” part of the equation. I would prefer if we had been called human doings. But I’m slowly being convinced that’s just ego talking.

I feel terrific if I do nothing. I don’t even mean doing things you might consider recreation. I mean I don’t do a damn thing but still in bed flat on my back. I let my mind wander. I’ve learned that leisure isn’t my style. I can’t do something and experience it as nothing.

Maybe I’ve got some kind of struggle with getting and staying in a parasympathetic state. Maybe I prefer the fight or flight. But it is in the rest and digest state of laying down that I finally feel at ease. It’s from where I bring myself back. It would be nice if I fully relaxed when doing my nails or hanging out with other people.

But as the only thing that truly gets me into parasympathetic is stillness I will trust that nothing. I’ll remind myself I need to do it. Maybe I’ll even be on of those people that calendar it. Sorry I’m out of office as I need to lay flat for the day. Come back tomorrow!

Categories
Aesthetics

Day 239 and Missing Vanity

I wasn’t much for makeup or clothing as a teenager, but I fell in love with fashion as I got older. I was swayed by the mysteries of style. The power of being dressed precisely for the occasion was not lost on me. I wanted to command the powers of vanity for myself

But as the pandemic set in I cancelled all my beauty box of the month subscriptions and closed my Rent the Runway account. I didn’t need red lipstick or cocktail dresses. When we summered in the Hudson Valley the first summer of the pandemic, I only brought one suitcase of sweatpants and cotton dresses. I didn’t realize it at the time but I was was leaving behind dozens of vanity rituals.

Like many other people, we decided to move closer to family as the pandemic continued. Going from Manhattan to Boulder isn’t exactly conducive to keeping up with appearances either. I found myself buying hiking pants and wool socks. I had no occasion to dress for anyone but myself.

I’m not sure how much I actually miss getting dressed. At least not for myself. Earlier in May before the Delta variant squashed “hot vax” summer for good, some ink was spilled on the mixed emotions of getting dressed for others after so much time in seclusion.

The pandemic seems to have proven that for me aesthetics are all about the dance with others. The joy of communicating one’s taste and preferences to the outside world is more riveting than playing with my look for an audience of one.

But I do miss that dance. Vanity can be a wonderful motivator to connect and communicate with others. I so badly want someone to see my hair. I haven’t heat styled my hair for well over a year. In fact, I haven’t had it cut for nearly 10 months.

My vanity tells me my hair has never looked better. It cascades down to my mid back without a split end in sight. Just waves. It’s fucking princess hair. My vanity whispers that someone surely would notice how beautiful I look. If they noticed how I look then they must always want me to notice them.

I miss the pleasure of seeing beauty in each other. Sharing a compliment and an appreciation for the little vanities we all keep.

Categories
Chronic Disease

Day 224 and Wanting a Break

I don’t want to write today. I feel foggy, unfocused and anxious. I had to have a medical procedure last week whose preparation was destabilizing. I felt pretty good coming out of it but a few days on I guess recovery has its own logic.

I don’t want to feel like this. In order to have the procedure done we had to remove me from all of my medications. Not normally something you do unless you have no other choice. Which in the end I didn’t feel I had. And I’m struggling. Modern medicine works pretty well. Some of science is neat.

I don’t want to be writing about any of it though. I’m scared, tired, sad and angry about all of it. I want to be alone. But my mind is so fatigued I cannot come up with any other topics. I tried to focus on fun things like the PR DAO I’m working on and some investments I’m excited about.

But I just can’t seem to make sense without a lot of energy and focus. And the doctors would prefer I keep the energy for my recovery.

So I’m stuck writing baleful takes about sleeping and migraines. I’d rather crawl into a hole and lick my wounds in private but I promised myself I’d write every single day.

And it seems I’m unable to write anything remotely intellectual. It’s all emotions and physical ailments. No wonder I’ve been watching so many BBC period dramas. Their leading ladies seem so relatable at the moment. Which is why I’m stuck writing about life as if I were some talentless version of Virginia Woolf. I’m incapable of writing about anything else but the consuming nature of feeling like shit. Write what you know is all fine and well until the thing you know most intimately is physical frailty.

On the bright side I did learn today that Herman Melville and I share the same diagnosis; ankylosing spondylitis.

Herman Melville endured chronic pains in his joints, back and eyes, symptoms consistent with ankylosing spondylitis, an autoimmune disease.

Maybe pain relief was his white whale too. Of course, he didn’t have the benefit of biologic injections like IL inhibitors. Maybe that’s why he wrote the great American novel and I’ve got a daily writing habit. I know glorifying and romanticizing suffering is a habit I’ve got to kick.