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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.

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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.

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Biohacking Chronic Disease

Day 1041 and Short Notice

I’m extremely frustrated right now. I didn’t get much sleep last night. I won’t get into the details, but it’s mostly because I was overstimulated by a very long workday after what was a very productive week.

I didn’t think it would matter if I was a little fucked up today from overexertion yesterday as I didn’t have any major obligations.

Except I got invited to mid-morning to something tonight. I wasn’t obligated to go but really wanted to do so as the guest of honor may end up having a significant impact on my life. And I’ve had an interest in it which I’d expressed months ago.

Now I had strong interest in attending as it won’t be a repeatable opportunity. So I wanted to push myself to go. I did my best through the afternoon to rest and prepare myself. But ultimately my body just couldn’t do it.

I cascaded into a migraine from the smell of my husband’s cologne. All my efforts to try to be restorative with the few hours of my afternoon were gone through a single small instance of environmental stressor. An obvious sign that I shouldn’t be going anywhere if something small could set off symptoms.

Now I’d like to say that I could have made it if I’d slept more. Maybe if I’d not worked so many hours yesterday. But I feel good about the things I prioritized yesterday.

But I am so fucking angry that I couldn’t have been given a little bit more notice as I would have found a way to make it. Literally even one day would have been enough so I could prioritize sleep.

It’s obviously no one’s fault. I’m simply furious that in an effort to budget my energy and physical capacity for what was my priority yesterday, I couldn’t find any remaining capacity today.

I guess the lesson is that if you want me to show up please let me know at least twenty four hours in advance. Or even just the night before.

Categories
Chronic Disease Emotional Work

Day 1020 and Subdue

I felt like I was on fire. Itchy skin, weeping eyes, coughing and wheezing, a sympathetic nervous system run amok. I was on my second histamine reaction in less than two weeks.

I have had two days of intense emotional work. One tragic aspect of a daily chronicle that’s public is dancing around some of the more private aspects of one’s life while still managing to write. I’ve been doing “a look ahead” exercise for the next decade with my family. Our goals and our challenges and our structures were all on the table. What do we want and how will we pursue it and what stands in our way?

So I found myself needed to sooth the systems. Reactivity is a choice. I wanted to feel my emotions but I’m less convinced I need to feel my hives.

So I downed 50mg of Benadryl, a couple other generic anti-histamines, a white girl downer, and I plugged myself into noise canceling headphones and a face mask. I did a few rounds of Non Sleep Deep Relaxation nervous system exercises. And slowly I was able to subdue reactions. I slipped into real sleep.

I feel better for it. But I also know I need more restorative time. Remaining subdued would be valuable.

Categories
Biohacking Chronic Disease

Day 953 and Sugar

If you’ve been following me for a while chances are good that you’ve seen me discuss my biohacking.

I’ve got an autoimmune condition called ankylosing spondylitis. It’s a form of arthritis in the spine. When it flares the inflammation can be so painful that basic tasks like walking or standing can be out of the question. It’s impacted my daily life in strange and sometimes sadly poignant ways.

Now thanks to the wonders of modern biologic injectables like interleukin inhibitors (my lucky number is IL-17h), non steroidal anti-inflammatories, the occasional round of chemotherapy workhorse methotrexate, and the ultimate big boss inflammation killer known as prednisone I lead a pretty normal life.

I am however always looking for new ways to improve my situation. You name a modality of healing and I’ve surely done it.

I’m regularly throwing myself at new pharmaceuticals, new workouts, new devices, and new routines. I track it all obsessively. If you want a 10 day water fast buddy call me.

This kind of thinking means I am prone to optimism and the occasional “one weird cure” line of thinking. The hope that springs eternal is the fantasy what ails can fixed with a gluten free diet (nope) or the du nude Goop wellmania cure which costs $500.

One of my biggest “I’ll be cured” fantasies is that the extra body fat I gained from multiple rounds of steroids and hormone treatments is actually the cause of my health problems and not one of its symptoms.

Notice they I don’t say biggest fears. My biometrics don’t really suggest that adipose tissue is my root issue. Being fat is a core problem for many people but for me it’s a symptom. I don’t want to disclose said biometrics as I fear insurance companies and pharmacies might decide to dig.

In pursuit of a cure for this symptom, I’ve been way ahead of the GLP-1 agonists like semaglutide. My Novo Nordisk and Eli Lily stockholdings are up 100%. I had success on Ozempic but went off it as the side effects got to be too much for me after nine months when I reached a healthy body weight.

But I recently I paid out of pocket to try Mounjaro as I’ve not happy with where I am currently at for excess adipose tissue. It’s supposed to be less brutal on the stomach. It’s got a duel mechanism as a GLP-1 and GIP receptor have lead to excellent clinical trial results.

I’d say about three weeks in those results for me are not forthcoming. I’ve been in a perpetual state of low grade anxiety that seems to be from hypoglycemia. I’ve been sluggish, cranky, moody and my mind unfocused and hazy.

As it turns out the glucose-dependent insulinotropic polypeptide receptor (GIP receptor) primarily affects the body’s physiological response to food intake and blood sugar regulation. So I’ve got low blood sugar.

Luckily throwing fruit at the problem helps the symptoms. I have not lost so much as an ounce though. I think I’d rather go back to Ozempic which at least took weight off. I’d rather have a fucked up stomach than a fucked up mind. Maybe other people need to eat less sugar. I guess I don’t have that problem.

Categories
Chronic Disease Emotional Work

Day 931 and Open Calendar

I am about to sunset a long-standing weekly appointment that has been on my calendar for literally years. And I was surprised to discover how much getting back that time made me happy.

The block on my calendar was for something I very much loved doing and valued highly, so the sheer joy was unexpected. But as it turns out I loathe having a consistent obligation on my time.

This isn’t to say that I don’t like being responsible, reliable, or on time. But rather I like knowing if something comes up that I have some flexibility. And I don’t like to disappoint people by needing flexibility.

My suspicion is that this represents some lingering guilt I have about having a chronic disease. While I rationally know that I did nothing to deserve being sick, I do carry a self limiting belief that being sick is a weakness.

I’ve always prided myself on being a “mind over matter” person. I’ve shown up to countless events, meetings, pitches, and other obligations while in pain. I’ve been known to repeat “Michael Jordan, Game 5” as a mantra to remind myself that I can perform in even the worst physical circumstance.

Michael Jordan famously played and won with the flu. And the logic in my mind was surely I can do the same when something is on the line. So I always have. If someone expects me to show up and perform I do it even if I am struggling.

But as my season of no has begun I think it’s time I stop romanticizing my capacity to work when sick. I love having my time back on my calendar and I love the flexibility that I have to work whenever and wherever I want.

Maybe some people would chose to work less under these conditions. For me though, having more flexibility in when I show up means I’ll find even more time to put into my work. Because I love showing up for me. And sometimes it’s easier for me to show up when it’s not a damn calendar block.

Categories
Biohacking Chronic Disease

Day 919 and Thin Skin

I am experiencing very palpably the literal meaning of being “thin skinned” this week. All the areas where my skin is thinnest (eyes, lips, fingers, and other more delicate spots) are inflamed.

I’m beating back some kind of this autoimmune response to having some pets in the house with everything I’ve got, and have thus far kept it from cascading but only just. It’s taken a lot of pharmaceutical intervention. I’m high on anti-histamines, cranky from the itchy, and fearful it’s already turned into a systemic infection.

I’ve got some animal allergies that I’ve kept from being isolating and overwhelming by simply not keeping pets inside. I can usually tolerate some exposure if I’m very careful with hygiene. Please ask me about my psychotic indoor clothing routine. And yes it was developed with an allergist hospitalist when I was 15. I’m beyond embarrassed by it.

I suppose this approach might make more sense if you knew that I’ve had my immune system rebooted with drugs as diverse as cyclosporine (they use that for organ transplants) and chemotherapy injections (methotrexate the WWI superstar).

I take regular immuno-suppression for ankylosing spondylitis which is functionally psoriatic arthritis in my spine. I have inflammation inside my body & outside on my skin depending on the flares. And I’ve done everything I can for it from allergy shots to 4 separate daily antihistamines

I am more reactive to my environment than your typical take a Benadryl allergy type. If you’ve seen that video going around of the 300mg THC pizza joint and thought “what the fuck who has that kind of tolerance” well I’ve got that kinda tolerable but with allergy medication. I can toss back 100mg of Benadryl and remain conscious.

I’ve got no Darwinian explanation for how someone like me is an end point for evolution except that we must value the extremely sensitive for some less legible but nevertheless crucial pro-social function. Maybe we spot the danger sooner? I truly do not know.

But I am thin skinned. I’ve been trying to manage additional allergen exposure all week as we’ve had dogs in the house that I very much would like to be able to tolerate.

I really thought with proper medication and cleaning I could keep reactions to a minimum. I didn’t want to make it a thing. And it would seem the reward for being thin skinned is actually having to inconvenience people by telling them that my having thin skin has consequences.

It’s unlikely I can get my symptoms down without having a total reprieve but we’ve done what we can. We didn’t resort to steroids so it could have been worse. Though part of me wishes we had as some skin is beyond uncomfortable.

I feel both embarrassed and frustrated that no one noticed my discomfort till I had to say I can’t tolerate it any more.

It makes me feel like I don’t matter unless I come with a story of misery and pain. Having to speak up for needs with extremely firm uncrossable lines always feels like abandonment to me. I wish people would see the discomfort, misery and isolation isn’t a choice so much as a medical necessity. I do my best to manage it but it’s easier when it’s a shared priority.

Categories
Chronic Disease Travel

Day 889 and Soul Delay

A girlfriend asked me if it felt good to be home in Montana. I said I wasn’t sure as my soul hasn’t landed home yet. I think it might be somewhere over the Arctic at the moment.

She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.

William Gibson – Pattern Recognition

I don’t feel like I’ve really landed yet even though I’ve been home for a full day. My body is going through various forms of blowback and regression as I resorted to Prednisone while in Europe.

I’m itchy and in pain and simply going about my routines despite it all. Rhythms and processes run my life because I’m a traditionalist. What you do every day is what you become.

Everything physical I do has a cost and nothing is higher cost than travel. I am bearing those costs at the moment. Blessedly the costs feel removed and remote as I am a perhaps disassociated as my soul may or may not be somewhere over Greenland.

So if you’ve not heard from me it’s because I’ve got a bit of soul delay with my jet lag. Or a bit of jet lag with my soul delay. You can expect reintegration soon.

Categories
Chronic Disease Travel

Day 882 and Disability & Energy Policy

I hate when I am made to feel it is embarrassed and ashamed that I have a disability. And German’s current energy policy has me feeling like my medical needs are something of which I should me ashamed. And that’s bullshit. It’s a policy failure.

I have ankylosing spondylitis (an inflammatory condition in my spine) along with a cluster of other autoimmune issues like allergies, migraines and dermatitis. If my symptoms flare I can’t walk and the treatments are unpleasant. Methotrexate, steroids, specialty biologics injections.

I live in chilly Montana as the cold is better for my condition than the heat. But when I travel I am confronted with heat, humidity and pollution which exacerbate my symptoms. Sometimes significantly. It has caused great anguish through its impact on family gatherings.

I find myself in Frankfurt for a mix of personal and professional reasons. The Airbnb I rented for the month was on of only a handful that offered aid conditioning at all. And one of only three that was a personal apartment and not a hotel service using Airbnb.

So I booked it even though I noticed it was on a main road in the neighborhood of Sachsenhausen. The host assured me it was quiet and most of the apartments looked out on a garden in the back.

Alas the bedroom was on the main road so I was unable to ventilate the apartment by keeping the bedroom windows open as the exhaust and debris from the roadway left my eyes red, itchy and I woke up with hives several times.

I bought a small fan at the local store and kept the bedroom door open and had the fan blow cooler air from the back windows overlooking the garden. I was still struggling with ventilation as the car exhaust and fumes meant the bedroom had to be sealed. Even then I paid $50 for a cleaner weekly to clean up the pollen, debris and dust that would get in from leaving open the window

I’d leave all the windows open on the good side, keep the apartment sealed and dark during the day, and have three weeks of extremely shitty sleep on my Whoop to prove it. But overall this worked well until it got hot enough to warrant air conditioning usage.

Sadly summer is rounding the corner and a few days in the low 80s (or 27-28 C for you Europeans) was too hot for my spine to tolerate comfortably. I was struggling enough with keeping the bedroom cool with the fan and back open window so I decided to run the air conditioner. It was old, noisy and hadn’t had its filters changed in a while. I made do.

The neighbors complained. Twice. Once through the Airbnb owner and the second time by knocking multiple times on my door. I had to explain to them embarrassing levels of medical detail to assure them this wasn’t preferred temperature or taste but a medical necessity. I hadn’t expected to show off my vials of injectables to be taken seriously but thanks guys.

This weekend it is expected to be in the mid eighties so I thought rather than fight off my neighbors and get another bad night of sleep with a dirty air conditioner and noisy roadway I’d check myself into a hotel. I’d been having a significant flare of all my symptoms which had required emergency doses of steroids, two unexpected infections (I take immunosuppressants) with two different antibiotics, and quite a bit of other remedies.

I woke up with strain and in a sweat. Antibiotics & steroids are fun

Well I guess the final boss of Europe’s poor energy policy was about to land it’s final blow on me. The hotel I checked into for some relief won’t turn its air conditioning below 72 or 22 C. It has to be much warmer to get it to my preferred temperature of 17 while I was experiencing this flared fever state. That apparently wasn’t an option.

So I guess I’m going to check one more hotel to see if they will allow me to cool my prior to my preferred temperature or I’ll prepare for another fight with my neighbors over running the air conditioning overnight again. Wish me luck. Build more nuclear power. Install solar arrays.