Categories
Emotional Work

Day 1134 and Happy Being Miserable

I am in a lot of pain today so I’m not thinking as clearly as I’d like. But I have learned to be sanguine about misery over the years.

When you have chronic illnesses you can either become a victim to them or accept them as part of the tapestry of human experiences.

I have had a framing that I’ll butcher today as I can’t recall any past artful coinages. It goes something like one can be existentially happy even if one’s circumstances are miserable. The opposite applies as well. People can have happy daily circumstances and be existentially miserable.

I feel like that no matter how much I may bitch and moan about my life that I am ultimately happy about my lot in life. I’ve got nothing to complain about and when I do complain it’s quite likely that kind of misery actually makes me happy.

Categories
Chronic Disease Medical

Day 1100 and New Symptoms

I am experiencing some ongoing nausea today alongside a number of odd side symptoms like body temperature disregulation. I am displeased with this development

It’s probably a cluster of symptoms related to a migraine. So I’ve taken an Imitrax. I had some sort of reaction to dinner last night (possibly allergic though to what I couldn’t say) that hasn’t quite subsided. I am in a dark room silent with an ice pack popping Zofran and praying.

I always hate when I have a new symptom as it’s scary. I don’t know if it’s a new problem or something a new spin on my existing autoimmune issues.

It’s easy for me to slip into fear as I run through a differential diagnosis. The idea that I might have a new dimension to deal with in my daily health routine triggers all my autonomic stress responses. I’ve got a handle on my existing health issues and I don’t have any desire for new ones.

There is a strange aspect of chronic disease where if you’ve reached any kind of stability or continuity you simply don’t want to mess with it. Adding in new treatments or medication is always a scary prospect. I’ve been doing bodywork that seems to have significant impact in a positive way but I’m terrified that as it improves things I’ll have down days as systems interact. I shall pray it improves soon.

Categories
Chronic Disease Medical

Day 1094 and Small Progress

I am clinging to the small progress in my physical condition. I feel numb and exhausted which is an improvement over being so much pain I can’t think while also breaking the variance ranges on my Whoop.

It would appear as if I missed Christmas and much of the week off even though I did enough doing some work when I had a few good hours.

I figure if I aggressively pursue a program of medication, rest and positive inputs I can make the small progress that should have been back if I just don’t rush it.

No one is looking for 2024 to get here and faster than necessary. Cling to the last moments of the year and cling to small progress. Who knows what happens next.

Categories
Chronic Disease Medical

Day 1092 and Responsible

Being responsible for your own life sounds like it should be a shared cultural goal. I was raised to view America as a place where we placed high cultural value on personal responsibility. Now I’m not so sure it’s a shared value for Americans at all.

I have been struggling this week with the responsibility I have to myself. I’ve been up and down with pain so excruciating I’ve struggled to think. And I’ve had a few glorious respites from the intensity. My afternoons have been a misery as my pain gets worse as the day goes on.

I don’t seem to have fully resolved what is causing my pain to be so much worse this week and I am praying it is just exacerbated by my end of year fatigue.

With that in mind I will be responsible for myself and keep this short. Hopefully I’ll be up for a year end review before the year is actually over.

Categories
Chronicle

Day 1090 and Winter Breaks

I would very much like to take an extended break to restore my mind and my body. I feel as if I could use a week or two offline.

The holy nights have held a place in my heart and mind as the season for introspection. I like doing fasts during this time, but it’s not been physically wise to take an extended fast recently.

I expect 2024 to be a big year. I had lots of little things to wrap in 2023 which is impacting my capacity to fully check out for the remainder of the year. Duty calls I suppose. I am keeping my obligations to others but I may need to find a way to keep obligations to myself.

On that note, I’ll keep this short. It’s better to get back to reading and resting when my capacity is diminished.

Categories
Chronic Disease Medical

Day 1089 and Silencing Inputs

I am doing very poorly today. All inputs into my system are being read by my senses as pain.

I’ve spent the last two or three hours in a dark room without any systems inputs but background. I’d hoped to become unconscious but was unable to sleep. It was an extended period of consciousness doing battle with pain. I didn’t set a timer or I’d be able to tell you for sure how much time I spent in this state.

I couldn’t read text on paper or watch visuals on a screen, I couldn’t listen to audio or intake spoken word without difficulty and intense focusing, nor could I tolerate novel or new smells. You’d think this would be very boring except that the intensity of the nerve outputs clouded all thought.

My body seems to be reading all changes in systems inputs as painful. I am unsure where the proximate source of my pain might be as it’s both too intense to get outside of and too diffuse to respond to mindfulness.

Typical locations like my thoracic spine hurt but I feel it in every joint as I take inventory. My intercostal muscles across my rib cage and chest are so tight I’d swear I have several broken ribs if I didn’t know better.

I’ve taken several pain medications of varying strengths (anti inflammatory and analgesic) to little effect. I had to stop watching Christmas movies with my husband sometime in the afternoon as I simply couldn’t handle the noise and sound coming from the tablet.

I don’t know how coherent my writing is at the moment and I feared I wouldn’t be able to muster any focus. I am finding it hard to look at my mobile phone screen even at the minimum brightness setting. This usually indicates a migraine but that seems like a secondary issue.

I hope this passes as I do not have time to manage this kind of symptomatic intensity. Perhaps my body knows this and is simply allowing a breakdown on a day where it’s safest to do so. In which case I may need another holiday or two to actually find a break restorative instead of as emergency maintenance.

Categories
Biohacking Medical

Day 1084 and Tension

For the last week or two I’ve been getting tensions headaches. While I have migraines that manifest mostly around hormonal cycles, I can’t say I’ve had a tension headache before.

Migraines make me sensitive to light, sound, and smells but this new headache type was more like a pressure inside my cranium. Typical migraine medicine like Imitrax didn’t do much but neither did Advil or Tylenol. I tried caffeine to minimal effect. Exercise seemed to exacerbate the issue, especially if I was getting my heart rate up.

After discussing it with my physician I’ve got a suspicion that I’ve done something compensatory that has caused tension in my upper spine.

I have ankylosing spondylitis in my thoracic spine so it’s a decent hypothesis that to protect myself from the chronic pain there I’ve added additional pressure further up my spine. A inflammatory issue causing a complete different mechanical issue is a logical differential diagnosis.

I’ve got a couple of approaches to fixing the problem. I can get some body work done to relieve some of the pressure in my neck and shoulders with a massage, physical therapy or craniosacral therapy. I can take more magnesium as it is nature’s muscle relaxer. I also can take muscle relaxers.

I think this development is coming now as I’ve been really upping my intensity professionally this fall. I’ve traveled a lot, attended a number of conferences and meetups, and generally applied acceleration to everything in my world. It’s a good thing that Christmas is almost upon us as it seems like it could use some time away from the world. I will be turning within.

Categories
Internet Culture Medical

Day 1069 and Fever

I both literally have a fever in my own body while I am watching a fever burn through one of my favorite extremely online communities in the form of effective acceleration memers versus a heavily armed establishment unit of academic utilitarians. Who would like you to know they aren’t effective altruists I’m sure.

I myself enjoy a good internecine debate as I became a Calvinist as an adult because fuck it the Reformation is the home of the institutional skeptic. Flame wars are the modern 95 theses. And naturally everyone involved thinks their counterparts are reactionaries. Tyranny of small differences.

I’d say more about this but it’s later in the day and like I said I am running a fever. My immune system is remarkably active so I’m honestly shocked a fever got through at all. I actively beat my immune system into retreat so whenever it gains ground I am annoyed and confused. So it’s probably best if I sign off as it’s never a good idea to be letting your fever dreams get the best of you.

Categories
Travel

Day 1064 and Faster San Francisco

I am energized by my day. Any residual pain from the challenges of travel have been mitigated by rest, exercise, meditation and lots of medication.

If I could to give only one argument in favor of acceleration, it would be our capacity to improve medicine. I’d like to find a cure to my ankylosis personally, but it’s bigger than all that. I believe we should do everything we can to improve the health and well being of humanity.

I do so much to balance my own health and wellbeing just so I can keep working and contributing to the startups I love so much. Often I miss so much of life that others take for granted like socializing together. Hobbies, socializing and much of the tapestry of living together is off limits to me as energy budget is too high.

I’d like more capacity in life so I can chose not only to work, but to go to meetups, dinners and whatever else folks get up to in their leisure and community hours.

I am not one for FOMO while I’m in bed recovering, but on the occasional day where I get to do leisure activities I am reminded that I could have more of life if we agreed to prioritize the acceleration of medicine. My energy budget is only limited by the state of our healthcare.

On that note I’ll be at an e/acc meetup tonight in San Francisco. If you think you see me do please come up and say hello. I’d love to meet you. I’ll be wearing the leopard dress I have come to think of as the “spot me in the wild” outfit as well as three distinct wearables.

Categories
Medical

Day 1043 and Differential Diagnosis Failure

I’m throwing something up here as I am fairly certain I’ll be out for the rest of the day. I have thrown back an entire pharmacy in an attempt to remedy a barrage of symptoms that are so intense I can barely process.

I thought I had a cold or potentially some kind of flu based on my initial symptoms like heightened respiratory rates, congestion and pain in my muscles. But as the day progresses I’m not so sure. The mucus is clear and was easily improved by a Mucinex and cortisone nasal spray. The remaining symptoms of lowered body temperature (which feels feverish) a migraine, and tight muscles are now much more acute. I guess the cold medicine I took was a waste of liver stress.

It’s messy and conflicting and neither myself, my husband, my doctor nor the artificial intelligence chats have managed a differential diagnosis.

My hope is that with the sheer variety of drugs that we have thrown at this that I’ll be passed out for the foreseeable future. Maybe a full twenty four hours of sleep can fix this. Hopefully you will see me cheerful tomorrow.