Category: Chronic Disease

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Chronic Disease Emotional Work

Day 1192 and Stasis

I am not feeling well today and used all the capacity I had to simply push at the edges of my universe and scream a bit into the abyss.

Screaming into the abyss is my pet name for being on the internet. Mostly Twitter. I know it sounds stupid.

Sometimes there are actual people on there still which is a small comfort. Just telegraphing into the universe that you are a “live one” is half the battle of bringing the future into the present.

I know it sounds like a stupid way to bring in resources and deals and alliances but it works. Make of that what you will. I’ll get on a phone call now and again if you are really compelling and intelligent. I spent some time on the phone with one of my favorite people and it was more energy than I would have anticipated.

Sometimes that’s just how it goes. There is only so much you can do when your time horizons for results are measured in a ten year cycle anyway.

It’s occasionally embarrassing to admit there are days I don’t have the energy to manage what what I eat, how much I exercise, whether I bath or do farm chores or otherwise manage the work of physical reality.

A few days of the month I do the absolute minimum to manage stasis and I honestly even that was a stretch. But like the classic Monty Python sketch of another era “I’m not dead yet!”

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Chronic Disease Medical

Day 1150 and Gut Biome

At the risk of being “TMI” (this is a gesture of self knowledge to readers not an actual concern of mine that I will ever include too much information), I did something stupid to my personal biome today.

I took an expired a probiotic. I fucked up my bacterial mix. In my defense, I didn’t know it was possible to have an expired Lactobacillus mix. Expired doesn’t seem to mean dead. It just is not doing what I’d hoped and I feel worse not better.

I honestly sort of believed that most probiotics on the self were bullshit. It’s hard to decide what’s medical woo anymore. But I acquired it from a German pharmacy last year and I guess GlaxoSmithKline supplies better shit in Frankfurt than it does in Bozeman.

I immediately nuked the new, supposedly friendly, bacteria from orbit with a one-two punch of doxycycline. I always carry some with me when I travel. Don’t tell my health insurance I’m so cavalier with my over-the -counter bacteria.

I’m joking, but only just. I’m sure artificial intelligence will be put out to nefarious purposes like denying health care coverage to random idiots who blog about their bodies any day now. I just doubt any lawyer will care what nonsense I got up to with yogurt when so many other forms of Medicare fraud are more accessible.

So in the spirit of my blogging forefathers and mothers, I’ve included you in the circle of trust as to the inner workings of my co-infections, symbionts, and other biological processes. Let’s hope, unlike in the case of Ripley, that nuking from orbit works. No need to be carrying aliens in my dark places.

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Chronic Disease Travel

Day 1137 and High Friction

I’ve been experiencing several forms of friction over the last week or two.

Some of it was a deliberate step back to be grounded and present. I introduced the friction myself to focus on my nervous system.

But other things have acted as more of a drag on my days than I’d have anticipated. The ambient noise of city living. The small frictions of daily needs like cooking and cleaning.

I even added some friction to my own shopping to speed up my decision making. So maybe there is a theme to be found in the extra friction. And truthfully I’m not sure all of it is net positive. I’m in the red more than I’d like. So I’ll cut down on any friction that isn’t performance enhancing.

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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.

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Biohacking Chronic Disease

Day 1099 and Wide Ribs

I’ve started some body work recently with an osteopath to see if more muscular skeletal fixes might be helpful. I’ve only had two sessions but I’ve already learned some very interesting things about my body.

I have a wider more open rib cage apparently. The osteopath noted that I’m on the wider side of ribs and that I could do some zipping to “close” them to impact my thoracic.

I did lot of singing and voice work in my school years. It was a requirement of Waldorf curriculums not any personal preference I had myself. Diaphragmatic breathing was a big part of voice training for me and it served me well over a number of athletic hobbies over the years.

I now wonder if I was born lucky with wider ribs on average (a reasonable assumption in my mind) or if the regular practice of voice work strengthened it such that it’s now now part of my affects and thereby reshapes my entire compensatory system. Either way my ribs are open and wide and I can breath and move my posture around this fact.

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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.

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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.

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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 Chronic Disease

Day 1086 and Body Language

When I was younger I spent a lot more of my time in my body. As I’ve aged I’ve become more cerebral and this has had a negative impact on my overall health.

I had the opportunity over the last two days to do some bodywork with very present people. It was frankly much needed. I haven’t felt entirely in my own body and was as reactive.

It helped to be with someone who was very present and attuned to body language. I spend so much time communicating in virtual spaces recently that I’ve felt further away from my body than I’d like.

If you haven’t had cause to get in better touch with your body this week might be a good time. There is something to be said for simple communication between humans that isn’t captured in our writing. Maybe artificial intelligence can work entirely without being embodied but human intelligence is still very much embodied.

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Chronic Disease

Day 1063 and Overclocked

Since acceleration is within my meme space so heavily I am pushing myself to go faster. Predictably that introduces some instability in my Julie equilibrium. That’s a fancy way of saying I currently feel like shit.

I’ve been a bit immobile for the last couple hours from hitting some type pain wall from overclocking myself. I’d hope it would pass so I could focus and write but it’s getting late on the West Coast and it doesn’t seem likely.

It’s possible this isn’t entirely the fault of excess strain from travel and it is in some manner hormonal. I wonder if at some point an artificial intelligence will be able to deduce my follicular and luteal phases by sentiment analysis on my blog.

Feels like a compelling argument for restricting government power over your bodies doesn’t it? Imagine the unceasing eye of Sauron collecting context clues about your reproductive system and the right to bodily autonomy goes poof.

Anyways I’m out for the night to go do battle with the pain so I can accelerate more tomorrow.