Tag: Medical

Categories
Aesthetics Travel

Day 548 and Shame

I’ve got a pit in my stomach. My throat has the constricted feeling of embarrassment that gets trapped in your gullet. I failed and lost money on something stupid. I tried to do a pleasant vacation sort of choice over a long weekend. A “nearby” Riviera town was supposedly within driving distance. I thought what could go wrong. Let’s go to the Ionian Sea! I briefly thought I could enjoy something like a regular person.

I said yes as everyone was so excited by the fresh air and the beaches. It will be healthy and fun! I was worried it would be without the basics I need to keep standing upright but I wanted to try anyway. Consistent air conditioning is really important to keeping the rest of my bodily system’s functioning. It’s a very Marie Antoinette need, but once my spine swells it can go very wrong very fast. Summers are hard for me.

My system begins to cascade within a pretty short window. About half a day. Eight hours without being able to lay flat for a break ended up fucking me up badly in this case. The “oh it’s close, just a three hour drive” ended up being a ten hour ordeal over badly maintained roads. I was sick to my stomach and in pain as we took hairpin turns and popped over potholes. I was in so much pain it was over a 10. It was “lose consciousness” levels of pain as my body knew I shouldn’t be awake for it. I was afraid it would get so bad I’d need a hospital. Instead I settled for opioids. Keeping out of the hospital was probably wise.

I hate needing those kind of drugs. The “your pain is a 10” drugs push me off the plane of reality by a few ecliptic degrees, and suddenly I can tolerate the pain and discomfort again. I understand how addicts get made now. It’s not real comfort. It’s synthetic but most people can’t tell just by watching. The fake relief looks real.

I’ve never felt tempted to take pain medicine recreationally. It’s usually only when a pain is too big for my reality that I tap out in defeat and take an opioid. It’s when reality crushes my soul as one variable starts to degrade the whole machine. I only use it to stave off collapse. And I was very close to collapse.

What is fucked up is that people like me off the axis of reality. The hazy hyper vibe’d unreal “reality” of encroaching nihilism is bop. Dystopia seems cool and consumable.

But it’s not an adventure for me. Living when sick is a daily dance with the devil who could use any chance encounter to end it all for you. The kind thing might be to stop fighting. But I rarely give up so I must enjoy the sticky Sisyphean crawl towards towards reality and the search for my own dignity.

I’m ashamed because I couldn’t make good decisions in that kind of pain. When the first hotel turned out to be a scam I happily laid down a card to stay till Monday at another hotel. Anything to get me relief. I just needed a safe cold place to heal.

It was a bad decision. The air conditioner didn’t work. I couldn’t get comfortable. I was sleeping in a dark sort of cold room as I couldn’t work up energy to go to the beach or even see the rest of the hotel. Not that it mattered as none of it was air conditioned anyway. I decided to go home after I had built up energy reserves back from sleeping for hours. I couldn’t tell you how long I passed out for but it might have been close to a whole day.

Alas I was again scammed for my efforts. The hotel clerk says no you paid for four days so you cannot get a refund even if you leave early. No refunds ever. No early checkout. No one cares if you are sick. Fuck her but I said hotel California for me. I was sick and needed safety.

I made some efforts to get receipts and documentation. I asked a receipt attesting that they wouldn’t let you cancel for any circumstance and that I was sick but it made no difference. Maybe I can take to the credit card or even the health insurance to show that I crashed. I’ll work it out on the backend.

I often wonder why I need special care. Surely I can try to do regular things like drive to the beach. But I couldn’t. I lost 48 hours to driving and bad air conditioning and pain. I didn’t have the health to stay at the beach. I needed to go back to the city with air conditioning.

I felt so stupid. I tried to fight to hold space that maybe I was a person that could do a vacation. That I was normal. And it was firmly corrected by reality. And then you think this is why I don’t go on vacation. The additional friction makes it a hell. It’s not a joy it’s a visit to hell.

I cut bait quickly this time.I’m ashamed at now much I must firmly maintain the no. No I don’t want to go to the beach. No I don’t have the energy got a full day road-trip. And definitely no on an empty stomach.

I feel like I’m not fun. That being friends with me is joyless because I can’t agree to fun things like a weekend at a beach. I find myself in tears having failed again at trying to do a nice normal fun thing. I ruined the weekend for myself and everyone around me.

Fun with me is being in a dark room. We watch television. Or maybe a movie. We make fun of a plot hole or bad casting. We sleep a lot. If we are at my home we do the chores. We keep up with the farm. There is no reason to turn consumption of recreation into a thing. It just hurts me. No cheap facsimile of an American vacation in a resort in a cheaper country.

That hideous example of colonial expectations of western domestic standards turn out to be required for a disabled woman. Air conditioning and short trips keep me alive. And at quite a cost. Since no one will refund me any of these damned scam hotels. I should have known better. It will probably take me a week or so to recover. And I’m so ashamed.

Categories
Medical

Day 545 and Stretched Time

Time has never acted like it is linear in my observation. It extends and stretches when you wish it could speed by. And it slows and circles back when you would most prefer it go quickly. Time is relative is a good joke, but also might be more related to a curse.

As I was waiting for a food delivery order today I could feel time unspooling. It stretched on into two episodes of some engaging but fundamentally disinteresting Netflix show. My head began to hurt. I remember taking an aspirin and getting a snack. I recall a phone call made to the delivery service order. And then my sense of linearity starts to fray. I’m not sure what happened next or in what order.

I think it was clear a migraine was coming on in the middle of this first act of swollen stretching time. But I couldn’t tell you for sure. Once pain hooks up with time it requires a Buddha or someone enlightened on the ways of Jhana. Still I tried to push myself out of the path of this time. Why not ordered a pizza as a replacement meal. That might be quick? I blamed the blooming migraine and it’s sister nausea on a lack of food. But in reality I was past the point of being helped. I was simply trying to avoid the oncoming path of the migraine.

I recall a pizza arriving but not the original delivery order. I made an attempt to eat. But I was in the grips of the time expanding migraine now. I took an Imitrax. I had some CBD. Perhaps terrapins and triptans could convince my mind that the moments of pain were short and fleeting. That was my best hope for experiencing the migraine in a positive way.

I put on a face mask. I sunk into a mindfulness practice. I noticed and turned over the kinds of discomforts I found myself in one by one. The emotional fears that I wanted distance rose up. The pain that bubbled around my body tightened, giving me a rationale for not wanting to being touched. A mind that wanted to drift far from others overlapped with my normal mind, this mind wasn’t forced to endure the noisy input from the world. All those experiences rose and burst forth and dissipated. Pain, distance, and fear came and went.

Consciousness seemed possible again. I had the sense that I could articulate some of what happened to me over the past three hours. That perhaps I could codify it in writing. It wouldn’t be as vivid but it would be there. The fear and failure and disprovals still existed but less acutely. The pressure on my mind had become less swollen. Time wasn’t threatening to extend out any other direction but forward. And maybe I could finally enjoy a bite to eat again. It has been five hours total since the migraine began.

Categories
Chronic Disease Emotional Work

Day 544 and Want of A Nail

I let something cascade over the past thirty six hours. I knew it would have an expensive energy budget but I wanted to try it anyway. I feel basically fine having made it through the entire experience, but now all I want is to sleep. And thank goodness as the consequences could have been worse than just needing more sleep. And I am reminded of the grief that comes from small consequences.

For want of a nail the shoe was lost.

For want of a shoe the horse was lost.

For want of a horse the rider was lost.

For want of a rider the message was lost.

For want of a message the battle was lost.

For want of a battle the kingdom was lost.

And all for the want of a horseshoe nail.

For want of a nail

I had a bout of perhaps food poisoning yesterday. It was unclear what the source might have been. Bad dairy seems likely. My whole body cascaded into responses. I was itchy and in pain and a range of histamine and emotional responses as the stress cleared through my system.

It’s always an exercise in frustration finding what little mistake or miscalculation sets off a disaster. Something so small can have massive consequences. I suspect it’s more about the power of the compounding effect. Or maybe it’s that giant domino meme. Sourcing backing to one silly little catalyst always shows you the fragility of your own life and circumstances.

I can’t tell if I find this reassuring and devastating. If the biggest life events always come from something small how can we event expect to impact an outcome. Or perhaps that is freeing. If everything comes from some unknown small then of events then we can simply life our lives unbothered by preparations and foresight. Something random is bound to knock life off track.

I think I’ll take the sanguine view. How could I possibly let myself worry when a little detail like a boot of nausea can set off a whole day. It’s a Franz Ferdinand approach to life. Sometimes a spot of political trouble in the Balkans sets off the whole world. It’s always going to be something.

Categories
Chronic Disease

Day 540 and No Pain

I’ve come to accept an ambient level of pain as part of my daily existence. I’ve logged over fourteen hundred discrete pain measurements over a three year period. It’s likely one been in pain for a bit longer but those are the documented years since I had a diagnosis and began working to overcome it.

I’ve only had a handful of days where I’ve logged below a three. The pain scale most of the medial industry uses is from 1-10 with 4-6 being moderate pain and 10 being unbearable give me the opioids pain.

I typically log somewhere between four on a good day and seven by it’s end. I’ll usually have an eight or a nine a few times a month. Those knock me flat and I won’t be able to get out of bed. I can work and do basics when I’m at a five or six but it’s very tiring. And frankly it took a lot of mindfulness work to learn to work through pain.

Pain is actually exhausting. It’s hard to even begin to describe how much it reduces your total capacity. Articulating pain has eluded much finer writers than I. Just because one can live through it doesn’t mean one should.

To have had a morning of relief felt truly miraculous. It was sadly short lived. Some stresses hit my day and my pain is back up to a four. I can live with a four. I have been for sometime. But to finally have seen the light of having a pain free day after years of struggling will sustain me for a while. To know that it’s possible. It felt like a miracle.

Categories
Medical Travel

Day 529 and Close My Body Now

Menstruation is mostly an exercise in pressure changes. Cramping and bloating make for a good reminder that we are ugly bags of mostly water. Or if you prefer meet popsicles. But I don’t recommend flying while menstruating as the pressure changes, aka jet belly, that wreck havoc on your lower intestines don’t really need the extra help.

I’ve got a theory that shorter flights are worse for jet belly because all the fluids and gases that are rumbling about inside you have less time to adjust. If you’ve never noticed that your lower half is bloated and rumbling after a flight, well, lucky for you. But I’m pretty sure you are also lying.

Our flight got put in a holding pattern over Denver as we waited for a thunderstorm to clear out. I could not have asked for a better metaphor as my cramps kicked into high gear. My chatty seat mate kept trying to engage in conversation and all I could think was I’ve got to shut my body down.

And then as if being crampy and bloody wasn’t embarrassing enough I started humming a twenty year old techno tune from Madonna. Yes, I remember the lyrics to her James Bond song.

I’m gonna destroy my ego

I’m gonna close my body now

This turned into a mantra as the pain and discomfort threatened to kick my stress responses into a cortisol spiral. I began a series of breathing exercises and kicked myself into a meditation so deep my poor husband couldn’t reach me. Madonna might have had a point. Ego destruction and closing down your body has a place during intense pain and discomfort. It only has to hurt if you let it.

Categories
Biohacking Medical

Day 522 and Tracker Jacker

I started an experiment with one of my tracking apps called Gyroscope at the beginning of the year. I took pictures of every single meal. For $150 they analyzed all of my meals assigned me a virtual coach to help me improve my total health scores across all categories including food, exercise, sleep and mood. A few days ago my husband physically took my phone away from me and canceled it. The experiment was a failure and it was it Gyroscope’s fault.

Personalized healthcare is a bit of a noble lie. They do give you advice that is somewhat personalized to you as long as your body is within the baseline of what we recognize as healthy. If you are within one standard deviation of the mean then it works great. These tools improve your health. Just remember most of our baseline data is from healthy, young, white, men. This isn’t a woke thing. That’s just the population with the most data.

It’s hard to give someone like me health advice. The basics are designed for otherwise healthy people that need to improve their activity, weight, sleep, and basic nutrition so they don’t become sick in the future. Maybe their biggest issue is being a bit overweight and sedentary. Most people do in fact need to move more and eat less and go to sleep on time. Chronically ill people, or those coping with an acute viral infection, still need to eat good nutrition but beyond the basics it gets more complex what we should recommend.

The coaches at any health app I’ve ever used have kept trying to give perfectly sensible guidance about activity and nutrition quality and lowering stress levels. I am sadly an extremely weird edge case so shit like walk more can actually be bad for me sometimes. Sometimes doing absolutely nothing is actually what someone with my medical history needs. And tracker apps have a tendency to go berserk when I need two or three weeks of bed rest. They go full red alert trying to make me get some exercise when my doctors are tell me any exertion is bad.

The straw that broke the camels back on the $150 a month experiment was getting influenza in May. It completely imploded all of my metrics. As a serious viral infection tends to do. I couldn’t get in any steps as I was basically bedridden. My food intake got weird as I was in Montana with friends and house hunting when I got sick. I had one perfect week of high protein and vegetables and then as I got sicker and sicker it was anything I could be coaxed into eating. There were two meals of milkshakes from Five Guys and that was considered a lucky break. Coughing and exhaustion sometimes means sipping a high calorie frozen dairy product through a straw is as good as it’s going to get.

As my metrics got worse from the flu and tracking food become a pointless exercise, I gave up on even trying to walk my very nice coach through it. There was nothing to be done on assigning me any health activities for weeks. I couldn’t exercise. Meditation did nothing to improve core metrics because I was fighting a massive infection. My sleep was shit because again fighting an infection. My nutrition was hit or miss as my throat hurt and my stomach struggled with new medications.

The renewal snuck up on me. I had wanted to say good bye to the coach. To let her know she tried. To reassure the Gyroscope teammates that my failures didn’t say much about them and how they coached people into healthier behaviors.

I’m a woman with overlapping chronic conditions that got an acute infection and there was no real way to come back from it in a short period of time. But I was still so exhausted and couldn’t bring asking Gyroscope for a pause (a sick break for fitness apps would be a killer functionality though). But my husband remembered the auto-renew date. So he just canceled the entire thing. Boom gone. Fuck off.

I opened the app for the first time in weeks today to at least turn back on the basic tracking so I didn’t lose any data history.

I like how the app does data visualization. I have no clue if I can track nutrition on the base level of product on Gyroscope. Whoever does their pricing tiers has changed it so much I’ve lost track. In the past I found it impossible to input nutrition into their tracker. It was amazing to have the app do it automatically. I relied on their team doing the macros not because I can’t do it myself but because I couldn’t figure out how to physically input it into the app. So I’m a little sad about that. But not sad enough to pay $150.

Categories
Chronic Disease

Day 517 and All At Once

I had insomnia last night. Earlier in the day I’d done a treatment for my spine and I felt terrific afterwards. I let the feeling of being without pain amp me up and then couldn’t come back down from it in time for bed.

I should have taken an Ambien and quietly read a book but, because I’m always worried about over using any type of pharmaceutical, I decided to wait and see if I could fall asleep on my own. Not that I helped myself in the matter. I kept my phone open and scrolled through such worthy topics as “what is Cat Marnel up to” and a meme account called tee-shirts that go hard.

I often find myself struggling with the decisions of “past me” when it comes to sleeping. I was in so much pain today I found myself unable to concentrate. The correlation between a bad night of sleep and a flare in symptoms is pretty clear. Living in a linear manner is one of the downsides of the human condition.

Around 4pm or so I had to tap out of the day. Forgoing the Ambien last night in a fit of false virtue meant I needed to a far worse drug today. I wanted to fight it but I just couldn’t. I slapped on a THC patch and put on Everything Everywhere All At Once. As I let the chemicals sort themselves out, I was reminded that time isn’t real as Michelle Yeoh made her way across the multiverses. The pain passed. Time did what it does in my human perception. And I’d survived it.

Categories
Chronic Disease

Day 513 and Pain Myopia

It’s a testament to how excellent my health has been for the past five months that I’m absolutely indignant about feeling shitty today. Last year feeling shitty wouldn’t have been a surprise. It was more like my default to be in constant pain.

Today my brain was fogged, my energy was low and much of that is tied to my pain being just unrelenting. I’ve been riding between seven and ten on a ten pain scale for the past two weeks. Infections tends to set off all of my chronic issues. My pain is tied to the legacy of old illness. If you think long Covid is bullshit, I can assure you that many significant infections leaves behind post-viral bullshit that can fuck your long term quality of life.

Pain is a steady companion in my life. In five hundreds blog posts I’ve mentioned pain ninety four times. Even I’m a little astonished looking at that number. Twenty percent of my life has the dark overhang of pain. I’m in pain more than that, I’d wager it’s about half of my life if my logs are correct. But 20% is about right for when pain is so present it’s at the forefront of my consciousness.

And that’s with assiduously managing it through medications, lifestyle and nutrition. But to realize that pain on the forefront of my mind 20% of the time feels a little bleak. It seems like a miracle I’m as functional as I am. It’s a miracle anyone is every functional with pain at if I’m honest. Pain is a myopic master.

Categories
Chronic Disease Startups

Day 508 and Deficit

I woke up feeling reasonably ok today. I slept well but checking my trackers I learned my recovery scores were pretty low. My HRV was dipping into 30% recovery territory and I had a low blood oxygen count. I’ve been recovering from Influenza A so it’s not a surprise my lungs are struggling. But I tried not to let some bad data psyche me out. Maybe I was ok. I told myself I just needed to stick to my routine as I can’t let myself get into a physical deficit.

So I went about my morning routine with some optimism. I got some coffee and made breakfast. I took several rounds of supplements. I did some basic grooming. I felt basically human. I was all excited to dive into work from the second I woke up. I was so excited I’ve been dreaming about the presentation I’m giving at Consensus. I literally woke up with talking points.

And then at around 10am I realized I’d used up all my functional hours taking care of myself. Fucking figures. I am already in a physical deficit from this flu. It’s scary for me to be in a deficit as my favorite coping mechanism is to engage in workaholism. I over prepare and over work and I make demands of myself that only sabotage the end result. It’s entirely counter productive. It just looks socially acceptable because of the Protestant Work ethic.

So I need to calm the fuck down and accept where I am and that it will still be good enough. I know my shit. It’s worth it. And I’ll deliver on better than the average midwit. Honestly even acting like this is kind of midwit. The real galaxy brains would just be vibing it anyway. But it really is amazing how easy it is to fall into midwit fear based patterns. Believing in the bigger broader math of your own life is really hard because so much of our own ego is rooting for us to indulge in our worst impulses. So I’m going to calm down, not worry about my energy deficit and continue to do the work. It’s not glamorous work. It’s mostly making good decisions day in and day out. But then compounding kicks in.

Categories
Emotional Work Startups

Day 505 and Deadlines

I’m trying to stave off a cortisol spike that my body simply does not need. I’ve got a talk coming up for Consensus in June and I owe an editorial with my main thesis along with any visuals I may need for the talk due next week.

I know the area I plan to speak about quite well. It is titled the InDAOstrial Revolution and I plan to cover some far future possibilities for what the new organizational structure can bring. And I do mean far as I’ll talk about some radical ideas like data collectives for rare diseases and networked nation states. I’m really excited as I think decentralized autonomous organizations offer us a new path for how we can pool different kinds of resources. I think DAOs give humans a chance to build better bigger weirder things on totally radical timelines just like the advent of the corporation did before in the industrial revolution.

I’ve been watching Gilded Age as I’m a sucker for set pieces but also because I love stories of wealth and power and cultural mores being pushed. I think DAOs have the chance to do that for society and the family in a way that is just as unsettling and ultimately wealth creating as anything we saw in the Gilded Age. And the changes we see to cultural norms will be every bit as revolutionary as the ones we see with inventions or investments. When times change, we push all of the ideas we have about how to properly organize individuals and citizens with it.

What I’m saying is I’m obviously passionate about the topic and even when I’m home with the flu I’m thinking about ways to knit together different worlds and metaphors. I might not be the best expert on DAOs nor am I remotely close to being one of the earlier people to get into them, but I’m absolutely an informed and enthusiastic professional with the training to think about this holistically. So I’d listen to me if I had the chance.

Nevertheless I’m worried I’ll botch the talk. My mind wants to worry I’ve run out of time to do a good job (I obviously haven’t) and that even if I put in a lot of hours it could have been more. I could have started sooner.

But honestly I’ve got to let that self defeating talk go. What I bring will be enough. And a deadline looming even with a sickness is no reason to worry when you know and love a topic well. So I’ll trust myself to bring you something good.