Categories
Chronic Disease Travel

Day 882 and Disability & Energy Policy

I hate when I am made to feel embarrassed and ashamed by my disability. And the German’s current energy policy has me feeling like my medical needs are something of which I should be 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 dry 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 one 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. They wouldn’t back off till I showed my records and medications insinuating I was both a bad person and that authorities could be involved.

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.

Categories
Biohacking

Day 881 and Set a Timer

I’ve always been the type of thinker who enjoy playing with differences and similarities. I find it pleasing to see common attributes of humanity. I’m soothed seeing we are more alike than not even across vast genetic & cultural distances.

I equally enjoy spotting games of “one thing is not like the other” as part of the general pattern recognition that evolutionary Darwinism implies. The freaks and mutants are who push us forward. Recognizing the value of positive differentiation is the basis for every job I’ve ever loved from fashion to finance.

This might be why I enjoy tools like timers, trackers, spreadsheets and other measurements of inputs and outputs. I like inferred knowledge and probability. Those goofy old standard test questions “this is to that: as that is to this” were my favorite.

I understand how totalizing using these tools can be. I’m currently experiencing the intense urge to smash my Apple Watch as I am asking it to “set a timer for 45” minutes several times a day. I’m setting shorter timers too.

I am spreading out a biohacking regimen while my body goes through an ugly symptom flare that suggests both allergy issues and a general immune response to what I believe is an infection from some scratching that opened my dermatitis. Fun huh?

The expectation that one’s body is unique and an N of 1 pairs poorly with averages, reversion to the mean, and the persistent beeping tinging ringing reminders of a timer going off telling you to follow the routine. So here I am wishing to some spreadsheet brained hope that my inputs and outputs will balance and I will be fine if we got the dosing right.

Which is the prayer of everyone who has ever experienced a medical malady. Set a timer, wait, and pray to an actual God as the ones in our phones aren’t up to the task of being deities just yet. More like having a troublesome djinn that promises the pain will go away if you do exactly ask it asks.

Categories
Chronic Disease

Day 880 and Pollen

It seems as if I exposed myself to a bit too much pollen in my wandering yesterday but I’m so itchy I’ve reconsidering whether pain is more or less all-absorbing than itching.

So I am giving myself permission to take it nice and easy on this blog post today. This morning I ordered an enormous number ($150 or so) of creams, unguents and lotions as well as a number of anti-histamines from a German apothecary in the hopes of gaining some relief.

Drug Delivery By Wolt
An assortment of German antihistamines and a few fun free samples as I guess I spent a lot.

I take multiple antihistamine already but I got a fourth (it’s Claritin in the US. A got a corticosteroid cream, something called Zugsable or black cream (it smells like tar) and a Linola Fett cream which appears to be like Weleda skin food without the fragrances. Plus some melatonin as I’m not sleeping so great with this itching. They tossed in some cosmetics as well which I will definitely put to use. And that’s all she wrote today.

Categories
Finance Travel

Day 878 and European HVAC

If I were a betting women, and I am, I’d be placing them on European heating, ventilation, and air conditioning corporations. Yeah, I think HVAC is a growth industry for the continent.

HVAC is use of various technologies to control the temperature, humidity, and purity of the air in an enclosed space. Its goal is to provide thermal comfort and acceptable indoor air quality.

You’d think after the pandemic brought the importance of air quality to everyone’s attention, that decent ventilation would a priority. Add in the increasing frequency of deadly heat waves and you’ve got real tailwinds for HVAC technology being crucial not only for comfort but for life.

So why are European apartments somehow both poorly ventilated and poorly insulated at the same time? Is there even a term for this? Finally I viscerally understand why bad air (mal air) is one of the canonical health problems of the Western Cannon. All those nerdy writers inside were suffering.

I’ll grant 1700 era European cities have more excuses than modern cosmopolitan ones for having stuffy, dusty, stinky, hot and yet somehow also cold and drafty air. They didn’t have electricity so no fans, pumps or air exchanges. But why the fuck haven’t they fixed it yet?

The worst plague of the great indoors is shitty HVAC. We have no excuses for it anymore as it’s an environmental health hazard on its own before we even consider the current energy crisis (don’t even get me started on what counts as being green). Refusing to keep your apartment’s ventilated and insulated is bad for your body and your budget.

So if anyone has suggestions for investing up and down the value chain of improving HVAC systems I think we’ve got a growth industry on our hands. Europe can’t refuse to air condition forever and it sure can’t afford to continue to burn coal and Russian gas to heat drafty apartments either.

Categories
Travel

Day 875 and Spring Fever

I had a flu this time last year. I was in process of closing on our home in Montana. What a week that was for me. The first piece of real land I ever owned. Better late than never.

This May I think I just have plain old hay fever. Blooming trees on Frankfurt city streets combined with a roadside bedroom has me sniffling and itching. I broke out the prednisone. 5mg at first. Then upped to 10mg the next day. I treat prednisone like most people treat opioids. “In case of emergency” would be preferable.

Maybe I simply get spring fever of some sort and I can romanticize it like some British Regency period piece as interpreted by Shonda Rhimes. Ah she had the rheumatic touch when she bought her ancestral home. But then had the vapors when she came to the Hapsburg Court. The deadly poisons of springs first flower has felled her bloom. Spring fever indeed, my pretties.

I didn’t even use ChatGPT for that. My brain can spit back up sick tropes. Nevertheless I do feel a bit felled by this inflammatory cycle that has required a little more attention than preferred.

Categories
Biohacking Emotional Work

Day 855 and Tissue Issues

I committed to a five week Nervous System Mastery Bootcamp about a month ago. My goal was to learn more about how I react physically and emotionally by better understanding my own nervous system.

I spent the first two weeks feeling overwhelmed by all the bits and pieces. I came in with more resistance and fear than I even realized, despite writing about how I was excited by what I might learn.

I’m still behind on the materials, but thankfully I’ve let go of some of my rationalizations for why. Being behind was resistance on my part.

Finding and loosing resistance ironically one is one of the reasons reason I even committed in the first place. So I can confidently say the course is working for me.

I’ve learned a lot about the interconnected glorious mess of my nervous system, my mind and my wider reactions to pain both physical and emotional.

Lisa Feldman Barret said: ‘Your body does not keep the score. Your brain keeps the score—your body is the scorecard…’ or put it another way — our issues are actually in our tissues.

The slow journey of accepting where I am in the moment will continue. I’ll be in the next cohort as well if you are interested use code JULIE.

Categories
Medical

Day 836 and Medical Care & AI

I had a little bit of excitement in New York City when I encountered some type of gastrointestinal issue. We’d speculated it was food poisoning or norovirus with our doctor.

After getting it out of my system and speeding back to Montana; we’ve been pouring over the symptoms, timing, biometrics and medicines to see if we missed anything. It felt like an opportunity.

We had three doctors retire on us this year and after two years of rising premiums, we are naturally skittish about health care. Pandemic telehealth reimbursement being sunset is a hit to rural care as is the other policy roll backs as the of emergency winds down. Reciprocal licensing across all states sure seemed like it should have been a keeper. But alas American health care is a mess.

Thankfully we’ve got a doctor local to us in Montana who we’ve been slowly building up a relationship with over our first year here. After his star turn in this gastrointestinal saga, I am ready for a round of blood work and a look at the big picture with him.

We’ve even been dabbling in a few theories with our Large Language Model friends. While ChatGPT goes to a lot of trouble not to diagnose, we’ve been able to run down some leads on our own and bounce them off our doctor. I’m looking forward to getting a look at my liver panels and gallbladder. Maybe tweaking some of the pharmaceutical line up.

While it may seem a bit grim, I’m considering that with enough questions asked and enough clever inferences on our behalf from our new AI friends, maybe we can get further. Sure we are down 3 doctors and up 30% cost wise, but maybe these plucky kids can make do with a chatbot, a young doctor and a can do attitude.

Categories
Biohacking Emotional Work

Day 830 and Nervous System

I’ve found myself angry for being so fucking stupid. I don’t remember what it was over. Maybe I got confused about some new piece of software on the course I’m taking. Maybe it was because I didn’t give myself more space today to take care of myself.

But I wanted to wag my finger at myself for all kinds of things. I was just afraid because I had to do a lot of things in a short space of time and I dislike logistical pressure. But aside from a few bumps and embarrassing moments I managed it all.

I took a little break and some extra medication to manage a pain flare. I just took everything one step at a time as it was in front of me. I wasn’t a victim to any of my challenges but fully capable and even happy to be doing so right by myself.

I am taking a course on nervous system mastery and today was the first session for orientation. I have a lot of experience in many modalities of coaching, physical biohacking, and family systems work. But the chance to specifically work on regulating my nervous system seemed like a challenge I wanted to rise to meet. Because we all have choices in how we face things. If it looks cool use code JULIE. I’ll be reporting on how it goes for me.

Categories
Chronic Disease

Day 812 and Stress

My internet experience recently has shown me some touchy people. Maybe it’s the stress of the global banking crisis. Or the random panics about Bitcoin. Or the AI panic. Or presidential perk walks. Or extreme weather. Or rising tensions with China. Maybe someone got the wrong coffee order.

Or maybe, in my case, I’m snippy and touchy because I’m having a terrible flair up of my ankylosis. I forgot what a challenge pain can be to manage. Then it comes roaring back after a period of intense stress and I forgot myself.

I’m just noting it for today as I’ve been working nonstop. I’ve had houseguests without fail for three straight weeks (five in total) for reasons mostly personal but occasionally with professional overlap. It’s just been a bit.

So no elaborate intellectual ramblings today or extremely online rabbit holes. It’s just a check in to say I’m not quite dead yet.

Categories
Chronic Disease Internet Culture Media Politics

Day 803 and Killing Strangers

I’ve been one of those types that absolutely has no problem taking a shot at the Christo-fascists dorks at CPAC mincing words about eradicating trans people from public life. Fuck you, you fucking fucks, you absolutely would be fine if state sanctioned violence eliminated trans people. It’s not you being metaphorical or cute or whatever justification you used. It’s killing strangers.

I wasn’t any more amused when folks decided it was alright to discuss a cost benefit analysis of keeping the disabled alive within the context of state benefits. No thanks I am not interested in a mercy killing because I’m expensive. Oh it’s a mercy killing for children? Yeah no still good thanks. Fuck you Canada. Medicare for all sounds good up until you decide to put me on palliative care via the metaphorical ice flow of opioid addiction.

So you might imagine I am equally sensitive about someone making jokes about euthanizing people who pays their bills by investing in early stage startups. Oh it was just a joke about how Keynes didn’t like the rentier class? Hilarious.

I am just rolling on the ground laughing at your erudition. Yes, benefits of a classical education. Har har. It’s so much smarter than the CPAC guy who wants to kill trans women. Definitely smarter than those segueing to mercy kill sick Canadian children. Oh wait, no it’s fucking not you sick fucks. Stop killing strangers in your rhetoric for shock value and clicks.

Perhaps I could interest the Jacobin audience members in a trip back to the Opium Wars, funded by Franklin Delano Roosevelt’s grandfather, just so we understand the gruesome reality that the New Dealers saw first hand in their own family trauma. Or if we are pluming the depths of the historical animosity towards finance and it’s intense hypocrisy, I’ll send you back with a copy of my favorite conspiracy text Creature from Jekyll Island. Then we can have a nice big chuckle about blood libel if you make it back.

I cannot believe that I am writing about any of this social media blood lust but perhaps we could all listen to Marilyn Manson’s Killing Strangers together and decide that there is no clever or enjoyable way to advocate for the killing of strangers. That it’s not cute to joke about killing people you don’t know just to further your political or economic aims. I’ll try to stop joking about how it’s ok to punch Nazis.

I am baffled that I keep ending up in groups that become the target of the genocide curious. I know being a hysterical disabled white bitch is a pretty commonplace “kill them all fetish” and smarter minds than me can untangle how all roads lead to disability. Witches and bitches.

But I’m getting unsettled seeing how it piles up and I keep getting lined up in other people’s sights. I’m married to a Jewish man. I’ve got queer family members. And yes I make a living investing capital (that I raised from weirdos) into other weirdos. Don’t worry my AUM is small enough I can’t live off management fees. Ironically because I’ve got medical bills because I’m disabled.

If you don’t know what that means and you still want to kill m perhaps it’s you that is the psychopath. Just a thought. Not that psychopaths are bad it’s just that I’m worried you will act on it. It’s not always clear if we are the baddies but advocating for blanket euthanasia is probably a helpful marker. Just like as a baseline for civilizational norms.

Either way, I’m not letting any of you kill my queer disabled Jewish rentier bourgeois family members. I don’t care if you a Jacobin or a CPAC member or a pissed off narco-trafficker running Fentyl out of Toronto. If you want to kill me because I’m a stranger and you don’t want to hurt the ones that you love. Ok. But I’ve got no intentions of making it easy for you.