Tag: Illness

Categories
Community Homesteading

Day 839 and Chatty

I occasionally have the ambition to be less of chatty Cathy. I almost cannot help myself in Montana. I keep meeting folks who are into the same stuff as me and then I’ll just end up talking for an hour.

Introverted Julie somehow always finds the homesteader, science fiction, alternative economy, crypto libertarian aesthetic studies semiotics pirate at the party. Sometimes it’s even the same person (hi Frank). I’ve now found not one but two homestead curious folks at a spa. The same spa! (Hi Kylie & Lorraine!)

I’ve got a general philosophy in life that you should be a beacon. We are responsible for our light and maintaining it. But are we not equally responsible for shining it into the darkness?

I’d like to see my broadcasting into the abyss of the internet as being a sort of existential lighthouse. Perhaps my chatty nature is some form of the same ambition. I want my people to find me.

And wouldn’t you know it but I’m always finding people searching for the same things. I have so many pockets of knowledge. And I want to share what I know with you. I want you to share your knowledge with me too. Your world and your experiences will add to mine just as mine adds to yours. Like the Borg but decentralized.

I’ve got a lot of weirdly specific knowledge. You know, Julie Fredrickson shit. And I want the folks who need the light I’ve cultivated to find me. So I will broadcast.

I know how to be in my body even with illness. I know about inflammation and healing from post viral shit. I know about sovereignty and survival and independence. I know a thing or two about being a doomer and an optimist.

I’ve got weirder more specifics knowledge too. Ask me about corporate governance structures and decentralized autonomous organization. Or the most cost effective luxury unbranded retinols. Or what biometrics to track and on what devices.

The point is that I’m here to be a chatty Cathy. And if you’d like to talk just slide into my DMs on Twitter. Or email me. It’s my first name dot last name at gmail. Consider this your bat signal.

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
Medical

Day 834 and Inside Out

I had a really rough night last night. It’s entirely possible my original theory of industrial lettuce wasn’t the whole picture.

For a little timeline clarification. Yesterday, I woke up with stomach troubles after eating agribusiness salad chain for dinner on Wednesday. I had meetings on Thursday so I took some varied drug store tummy medicines and gutted it out. I even had a very fun time at my meetings. But then as the adrenaline of the day wained I was heading towards disaster. The nausea and had was getting worse.

I realized I couldn’t attended a dinner with some old friends but Alex was fine. I told him to pick up some Tums on the way home. As his dinner wore on my symptoms got worse and worse.

I felt like I was beach ball ready to pop. My stomach was distended so far I felt like I had back problems my stomach pushed out so far. I was tight Mike a drum. The pain and nausea consumed my focus. Around 7:30 or so I called Alex saying I needed a doctor or a visit to urgent care. I couldn’t tolerate it any longer.

Blessedly our doctor in Montana called back almost immediately. He had just personally had a case of stomach flu or norovirus himself and mentioned it was trending up nationwide. At that point I was mostly moaning and curled into a ball from the nausea and gas. He prescribed an antispasmodic called dicyclomine. It helps calm stomach cramping.

I had an hour of crying and praying waiting for it to kick in. I’m sure I scared the shit out of the other hotel guests with the moaning and crying. I was begging Alex to please fix it. To find something else I could take. To do literally anything to relieve me of this horror. Thankfully around 930pm or so it kicked in fully. How do I know?

I was able to vomit. A lot. Seven times over the course of half an hour. And then I was fine. My stomach deflated down to a normal size. The nausea abated. The pain and cramping subsided. Four hours of intense misery has passed with a drug that turned me inside out.

I spent all of Friday in bed sleeping it off. I missed all my meetings and couldn’t eat anything till dinner time came around. I’m having some soup and I suspect I’ll simply pass out. New York is an inside out kind of place sometimes and I’ll just have to live with it.

Categories
Medical Travel

Day 833 and Industrial Romaine

I packed my day a little too full so I found myself ordering a salad from popular New York industrial salad chain Chopt at 8pm right as they closed.

The order was placed on an app so it was a crapshoot and I knew it. And sure enough I got something that wasn’t what I ordered but I’d been running around for 12 straight hours so I just said fuck it I’ll eat this weird burrito of industrial romaine and mayonnaise because I’d really rather be passed out.

Incredibly poor decision making on my part. I was up early and I was up often performing ablutions and praying to the gods of intestinal fortitude that this please pass swiftly.

I appear to have stopped with the worst of it and had about an hour or so before a meeting I really didn’t want to cancel. It’s not as if food poisoning is catching. So I groomed and put on something that would withstand the 88 degree heat of…checks notes… early April in Manhattan? And then I got on the subway.

Shockingly heat and the subway aren’t a great combination, but I was determined to gut it out. I’d left early so I could find my way to a drug store. Naturally nothing was available to purchase without someone unlocking a cabinet. Nothing more humiliating than asking if one could have a key to acquire GasEx, Tums and Imodium. A really stellar look all around.

I’m now comfortably in a lovely office of a venture capitalist hoping it all kicks in before I need to attempt socializing. Naturally I’m taking the time to write about it as I wait as it’s keeping my mind off the discomfort and misery of it all.

This isn’t the first run in I’ve had with agribusiness greens that’s gone awry for me. Many moons ago I got food poisoning from spinach I bought at a Trader Joe’s. A few blocks from where I am now. I had Gucci insurance (literally Gucci the luxury house I do not mean that it was particularly fancy) and spent the night in the emergency room. So maybe this is just a full circle experience. Ashes to ashes romaine lettuce to romaine lettuce to romaine lettuce.

I can feel the drugs kicking in and maybe I’m at the end of it. And hopefully this will just be an amusing anecdote that I recount on why we need to be more careful with food safety and industrial run off. But also I am loathe to cancel a commitment during a business trip. Showing up matters too.

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 Travel

Day 791 and Bathing Suits I’ve Never Worn

I’m on maybe my third or fourth trip to a warmer climate where I’ve brought a Norma Kamali bathing suit. I bought it on sale from Net-Porter as I’d always wanted one of her classic one pieces. I’ve never worn it.

For the casual reader, I have a chronic autoimmune disease called ankylosing spondylitis. It’s an inflammation condition that affects my spine and is aggravated by heat & humidity. Any temperature above above room temperature, give or take 72 depending on the humidity, starts to swell my tissues.

It’s well controlled with drugs but environmental factors can quickly spin up a bevy of symptoms including pain so debilitating I can’t walk. It’s one of the reasons we moved to Montana. I can live a semi-normal life so long as it’s cold. I spend most of my days laying flat in bed or in a zero gravity chair. My disability has become one of the super powers I use to propel my investing alpha. Because what else do you do with your time if you can’t leave bed except monitor financial indicators and chat with founders?

But back to the bathing suit. The black halter swimsuit has turned out to be entirely an aspirational garment. It’s still got the sanitary sticker for the crotch on it that says remove before wearing. I left it in and it’s become the not so subtle reminder that I may never enjoy a beach vacation again. It’s simply beyond my grasp unless I want to pay an obscenely high cost in pain and immobility.

I dutifully pack the Norma Kamali suit on each trip with a warmer climate. I’ve taken it to Miami, Texas, the Mediterranean and Mexico now. For this trip to Puerto Vallarta I packed a second bathing suit. It’s a striped bikini.

I had a fantasy that maybe I’d need a second swim suit as the other would need to dry if I swam every day. Oh what self deception we humans are capable of when it involves something we cannot have but want. I’ve never put the second suit on either. It also has the sanitary sticker still on it. It’s beginning to feel like they taunt me. Isn’t it funny that Julie still yearns to participate in the simple pleasures of life. “That dumb cunt” I imagine them murmuring as I pack.

My father loves tropical vacations. An adults only resort on a beach is his idea of a good time. And for his birthday, my brother and I very much wanted to give him what he wanted. Part of this is self protection as he often forgets to ask after other people’s preferences even if they are for something serious like a disease or disability. Better to avoid disappointment than know for sure. But also if we can give him what he wants why not make the sacrifice? It’s expensive for me energetically but I wanted to spend.

But it’s become clear I can’t make the sacrifices desired for the perfect fantasy family vacation. The bathing suit gets tossed in the suitcase with the knowledge that I can only manage one event outside each day. It’s usually a dinner or a chat.

Then I must sleep it off and work to recover. There is no space for pleasant relaxation on the beach in my body. The compressed Lycra slowly battling the expansion of my tissues as they swell overlapping with stuck lymphatic liquids would be torture. There is no joy to be found and no extra capacity to be eked out that might make the experience mimic the pleasure in a healthy body.

The fantasy is just that. A delusion I have about a life a lost and unlikely to be regained. The after effects of fertility treatments, IVF and living hard to outrun the vicissitudes of capitalism. I’ve accepted it as my lot in life. But it’s much harder to get it across to the rest of the world. And my fear that I’ll be left out and forgotten, that if I don’t fit myself into someone else’s life I’ll be abandoned. And so I rationalize that I’d be abandoned if I don’t at least try to bring the bathing suit. Even though going to the beach is a fantasy.

I hope my friends and family are able to meet me half way but I remain afraid that they don’t know how, or are unable to imagine what it’s like to live in my body. And it would be nice to be met halfway.

Categories
Biohacking Chronic Disease

Day 790 and Siesta

I have been crashing out of my day into a sleep cycle after lunch till about 4pm while I’m in Mexico. The stress of the situation along with the heat and humidity have me needing a lot of rest.

Last time I was in a hotter climate I’d find myself crashing out into naps if I did something like eat lunch outside. I think something similar happened here. There are no air conditioned common spaces in this hotel so if I want to spend time with someone I’m outside. Sure there is shade but that doesn’t knock down anything but brightness. The heat and humidity strike anyways.

I hate this phenomenon. I don’t find it helpful to be laid flat and exhausted by two or three hours outdoors, sitting, in the shade; but it’s absolutely draining. Even if I felt like I had a full charge, which I don’t particularly, I’d be down in the red quickly.

I woke up with someone asking about dinner plans which I had offered but in truth the most I want to do is get some dinner and go back to sleep. It’s just much too draining to be outside and there aren’t many restaurants in this town with air conditioning.

Categories
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
Emotional Work

Day 772 and Spoiled

For as much as I write about pain, both emotional and physical, so much of my life is saturated with joy.

I was asked this week “when will you accept that you are happy” and I was thrilled to find myself blurting out in agreement “It’s true I am so happy.”

Crawling your way back from a life event that gave you ego death is no easy journey. You either accept that you are responsible for yourself or you don’t. And really bad shit happening to us like illness or divorce or death loss tend to be deeply clarifying.

I feel so spoiled by the life that my choices have given me. For all the mistakes I made, and they are numerous, I on balance made the right calls. I have never felt more loved in life than I do right now. I’ve got what I need and I felt brave enough to go after what I wanted.

I’m surrounded by people who care about me for me. And it’s such a luxurious feeling to be given the space to be yourself. It’s even better when being yourself is the thing that everyone loves.

A Friday night surf and turf feast with filet and crab.

I spent so much of my life fitting myself to my circumstances. And now here I am stretching out to become more of myself and I find myself rewarded for it. Last night my husband and a dear girlfriend made a magnificent surf and turf dinner. Just a restaurant quality meal made by my loved ones at my own home in Montana. And then we all watched one of my favorite movies Margin Call

Crab with lemon & parsley
Categories
Emotional Work Politics

Day 768 and Memory

I’ve not ever read Proust in its entirety, because what am I, an eternal being who exists outside of linear time? But, thanks to Wikipedia and university survey courses, I am familiar with its basic themes of memory and it’s frustrating insufficiency.

Anyways, when not pondering madeleines, I am often confronted by how resilient the mind is in protecting us from the horrors of the world. Memory is a very funny thing. As good a reason as any to maintain diaries or engage in hagiography, is that you’d be surprised at what you forget if you don’t write it down.

A doctor asked me to get a pelvic ultrasound. I surprised myself by saying absolutely not unless it’s an emergency life or death situation, I am not doing that. And she, in sincere surprise, asked me why not.

And, because I guess therapy works, I recalled a pelvic ultrasound from maybe 10-12 years ago. I’d been referred in to a specialist as there was concern about a uterine cyst. This doctor, a gentleman over 50 in the kindly white patrician archetype, who I did not know know, proceeds to tell me this won’t hurt a bit.

But it does hurt. I am screaming bloody murder. It hurts so much I cannot stop. He tells me he will call security unless I quiet down. I cannot and I am in tears hysterically trying to convey the pain to him. I pass out.

I had utterly suppressed the memory till today. It happened to coincide with my husband mentioning a think piece in New York Magazine about women who empathized with the Clare Danes character from Fleishman Is In Trouble. There is a profoundly violating scene around reproductive health and consent that culminates in dark emotional trauma.

And of course, because it’s happening to a striving insecure aspirant white bitch, it totally doesn’t count right? The internet is not sympathetic to whining Clare Danes types. Fucking Karens. It’s super cringe to consider where the system hurts you, because, you dumb bitch, you benefit more than anyone else except the men.

So I guess I am not surprised I had banished the experience of something bad happening to me at a doctors office, but you know, it was not so bad that I am allowed to complain about it. And that is how the patriarchy perpetuates itself. Shut up you are rich. Look at the skulls upon which your empire is built you witch.

What I’m saying is that maybe you need to remember who it is that benefits from you not remembering the pain. Who benefits from forgetting? And trust me they are very scared when you realize that you remember. Even the rich striving white bitches have scares from this system.