Tag: Chronic Disease

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Biohacking Chronic Disease Travel

Day 789 and Types of Poverty

As you’ve probably seen articulated in thought leader tweet streams and thot-leader Medium posts, there are different kinds of millionaires. If you are young you are a time millionaire. If you are able bodied and healthy you are an energy millionaire.

I am in energy poverty. I carefully ration my attention & time and use lots of time-economic craft like asynchronous communication like emails and direct messages. Like a thrifty person with a budget I am always cutting the various coupons of time in my life to cobble together enough time to work full time so that no one can tell I’m energy poor.

It’s pretty common for folks to be in energy poverty. Maybe you are a parent. Maybe you are a care giver for an elderly parent. Maybe both. The most common is of course being disabled and requiring care. I am in that category.

I’ve turned my energy poverty into my super power. I am like Mr World monitoring feeds across the globe laying back and ingesting information & taking small minute actions to adjust my plans. I’ve adjust my career to fit this reality and find it to be an excellent fit for investing as it’s all about finding the alpha and acting on it.

I do telegraph that I’m in this situation. That my mind is sharp but my body is weak. I accept 2-3 events a week at maximum that require me to be up, about, in makeup and battle regalia (business dress) and the rest is dedicated to recovering.

I’ve never had hobbies that couldn’t be done from bed. The last time I participated in a sport was in my twenties before my latest flare. I’ve not had a social life independent from work for decades. It’s isolating and I remain perpetually afraid of losing people who aren’t in the same situation of energy poverty as I am.

Capacity can be drained further by negative conditions like heat, humidity or bright light. I am the type of disabled person that finds showering to be a huge drain so typically include those in my energy budgets as drains. Travel requires 24-48 hours of minimum recovery time which is why I tend only do month long stays places. You may have noticed I go cold places like Prague or Frankfurt and I live in Montana. That’s based on doctor recommendations.

Certain types of travel can’t be done without significant outlays of energy budget that will leave me in deficit for weeks. Beach vacations have long ago been lost but I can manage a tropical location so long as I stay entirely inside in an air conditioned room. Don’t worry laying on the beach isn’t fun for me so I’m not missing anything. Heat & salt water humidity is the fastest way for my body to begin an inflammation cycle.

I’m in Puerto Vallarta for my father’s birthday and the best I can manage is stay in my room all day and a dinner every other night. It’s a little confusing for folks who aren’t in energy poverty to fully grasp the concept but I feel no more frustrated with my situation than I would if I had financial poverty. Sometimes it’s just the situation and your budgets have hard limits. I’ll make an effort and spend 2 weeks of an energy on a long weekend for someone I love but it does cost me. Everything costs something.

Categories
Chronic Disease Travel

Day 786 and Snow Birds

I woke up at 5am this morning to begin my journey from Bozeman to Puerto Vallarta. My father’s 80th birthday celebration is taking place in the appropriately warm tropical conditions so favored by retired snow birds. And it’s his party so he gets to chose his favorite location for us to gather to celebrate him.

Both my father and I live in Montana, but he tends to prefer travel more than me by a wide margin. I travel mostly for work and family obligations. I don’t find travel to be fun or an enjoyable luxury. Vacations aren’t my thing. Especially when it involves travel to somewhere hot. I would have been happy to celebrate in the -20 in Glacier personally.

Most of dislike of travel comes down to not caring for hot weather because of how much it hurts my body. It makes my spine swell. Humidity and heat are my enemy. I live in Montana partially for health reasons as anything above about 75 kicks in some of my inflammation issues.

Add in the additional strain on the spine of sitting in uncomfortable seats for hours and I’m currently struggling mightily not to wail uncontrollably from the pain. I desperately want to lay flat to ease some of the tension that has built up from needing to hold my body still and upright in uncomfortable airplane seats. I don’t want anyone to see that I’m barely holding back tears because the pain is so bad.

Alex got tisked by the flight attendant for trying to retrieve some of medication as we’ve got one of those useless bulkhead seats. It’s a terrible choice for even a modest disability as all the things that keep me functional in my travel bag were immediately whisked into overhead compartments. We didn’t do it fast enough and the attendant hovered asking that we hurry it up.

I haven’t done short haul flights in a while as most of my travel has been flat lay seats on international overnights. I wasn’t prepared for how much sitting up in a tight domestic airline seat would hurt. All I want to do is lay flat on a bed for 24 hours after this.

I’m on an airplane packed to the gills with Lily Pulitzer knock off wearing Boomer blondes and their salmon shirt wearing deeply tanned husbands. They all seem cheerful and excited to be headed to Mexico. Snowbirds are a colorful species. An exotic and hopefully endangered species that will eventually give way to more local and regional appreciation as the next generation of travelers pursues less Jimmy Buffet stylings.