Tag: Emotions

Categories
Chronic Disease Medical Travel

Day 1657 and The Boredom of Summer Surgery

It sounds a little ungrateful to say I’m bored, as I sit comfortably in a nice hotel bed with books, Netflix, room service, and a nice view but I am bored and a little miserable.

Antibiotics, discomfort and surrealism are a challenging combination for existential stability as it turns out.

I can’t do much beyond sitting still and getting up once an hour to walk a couple hundred steps. I have been instructed not to sweat so I can’t go outside much. Even in the evening with a breeze, it’s still hot enough to break a sweat and this is an infection risk.

Beyond sweating, you can’t disturb you wound healing in anyway so I can’t exercise. At best, I can do some light yoga and stretching. Short walks indoors are OK so I can’t walk the hallways but that makes staff nervous. I keep to myself mostly.

Most tragically for me as we don’t have a bathtub at home is that I can’t take a bath or submerge myself in water for weeks. So the gorgeous bathtub is simply taunting me. I love a good tub and this is a great tub.

No submersion in water for two weeks minimum

It’s even worse when I stare out at the beautiful pool. That is obviously an infection risk as well. No splashing around in Norma Kamali pretending at social aspirations. Oh yes Istanbul is the new Florence in July haven’t you heard?

At least the nearby Bosphorus is packed with cargo ships, I have no temptation when seeing the beach to have a dip in the water. I doubt diesel fuel is good for healing.

The highlight of my day is the hotel lounge’s breakfast where there are charming varieties of very Instagram friendly food. It is still in a hotel lounge but it’s a beautiful novelty.

Tea, pomegranate juice and rose honey yogurt

I’ve been annoyed by the variety of influencers who are also healing around me. There are any number of different plastic surgery and aesthetic patients in the guest mix.

If you think a week of blogging about an emergency sepsis slice job on some indelicate bits, imagine how weird it is to see an entire family getting plastic surgery and their daughter (I think?) is live-streaming most of it.

I’ve seen more puffy lips than I have fish on this trip and that’s my fault. I don’t have the strength dress up or walk to the Michelin starred seafood restaurant. Maybe that’s more for the elective surgery types and the emergency infection girlies have just enjoy the tiny yogurts.

That’s almost a bagel and lox set up right?
Categories
Medical Travel

Day 1655 and Healing Waters

I am now forty eight hours post operative and I feel like shit. I was warned but I am not enjoying how the very intense antibiotics make my brain feel.

The first five to ten hours after surgery when the local anesthetic hasn’t fully worn off and your adrenaline is still pumping are the easiest. I was smiling and happy to walk myself to the hotel and I was snapping pictures of the Turkish Cipro in amusement. How cool was all of this?

It didn’t stay cool. The first 24 hours are weird as you are still gooy and gushy so it’s tons of clean up and hand done hygiene. You aren’t allowed to shower yet, so it’s just a liminal state of grossness as you wait for swelling to abate and antibiotics to work.

Well, I’ve passed hour forty eight and I’m brain dead. I can’t think straight. The work I was excited to do in bed as I stared out over the Bosphorus was probably a fantasy.

I’m tired. I’m swollen in very tender areas. The idea of showering is simultaneously appealing and too exhausting to even contemplate. I am staring at the lovely bathtub I can’t use. Suddenly all the sources of water submersion are a threat instead of a joy.

We don’t have a bathtub at home so I only get to relax and soak a tub when a hotel and here is a beautiful one that I cannot use

Despite my exhaustion it’s very hard to sleep well in this situation. I need to keep pressure off the wound so it’s all about pillows and angles. I stayed up playing on Twitter where someone asked how a bottle of water for skincare could possibly sell at such a high price.

Right about now as I contemplate my banishment from the pool, the beach and the bathtub I think about how much I’d enjoy the healing waters of a mineral hydrotherapy spa.

Categories
Medical Travel

Day 1653 and Slicing Then Cipro

Well it’s been exciting day for me and I may be a little bit high (alas not the fun or good kind) as I just had an abscess surgery in Istanbul.

I’m waiting on the lab work for the culture and pathology but from what I saw come out of the abscess it can’t be anything good as the doctor prescribed multiple antibiotics including Cipro while we wait for results.

Bimzelx has some gnarly side effects and I don’t know how much more slicing up infections I can manage for an immune suppressant biologic. My biometrics are better but 2 eye infections and one abscess surgery that almost went septic isn’t making me feel great about the balance of value on the drug.

I can’t say enough nice things about the Turkish medical system and their treatment of foreign “tourist” patients. It’s my second time this year having my Bimzelx side effects treated here.

A lovely interpreter and patient advocate was with me the entire time. The physician was so empathic. She was astonishingly effective in technique and her whole being moved with an efficient alacrity that was admirable given she was in a floral print silk sundress, high heels and pearls.

Imagine being so good at your job you can squeeze infected goo out of another human that you do it in white silk? I was impressed.

She on the other hand was not impressed by the care I received in America.

“They knew you were immunocompromised and did not insist on an ultrasound and immediate treatment?

What do you mean they said wait and see?”

“I don’t believe the other doctor thought it was a swollen lymph node given the clear folliculitis literature warnings for your biological drug.”

I was headed straight to sepsis and in her mind having multiple doctors leave a high risk patient to “put a compress on it and wait and see” when it was easily 3mm below the skin was malpractice to her.

Quite the big abscess eh? And look at that irritating side ways hair in there so deeply buried

And indeed I am on the kinds of antibiotics you’d expect someone close to septic shock might be on. I am amazed to be doing as well as I am. But I am frankly furious.

I tried to be responsible with preventative care and was ignored. I just kept on going until the small lump became a large lump. Then it rapidly became so swollen and infected it couldn’t be ignored. What a metaphor for the American healthcare share. You try to be responsible and are shown the door till it’s a crisis. And then they can’t even fix the crisis.

On the bright side I’m in a lovely hotel next to the hospital receiving excellent care. I could afford to fly in and get it taken care of without any worries (for the curious this was $2,000 for surgery and follow up care). I was in a very space age room after being in surgery and all my intense antibiotics were hand delivered to me. Now we wait to see what the labs say.

A private recovery suite
Categories
Biohacking Chronic Disease Medical

Day 1650 and Trying to be Heard

I don’t think of myself as someone who struggles to be heard. I am loud, I speak up, I have a large social media platform and I don’t mind being impolite if I need to be heard.

And yet, the incidents where I am ignored, dismissed, or even outright insulted seem to be on the rise. I follow the rule of three assholes generally so I have to wonder if it’s me, but nothing makes you wonder more than getting really bad basic medical care.

I am attempting to get a cyst (or abscess or infected lymph node or whatever the heck it may be) diagnosed in a country where I don’t speak the language.

No one can agree what doctor is right. It was a gyno who sent me to a dermatologist who wanted me to go back to a gyno last month.

Now I’ve got a gynecologist who wants me to repeat the conservative management program I’ve been doing for months.

Which hasn’t worked, but she is implacable in her iron lady demeanor. Bactine and warm soaking. Maybe she does understand the immune suppression part? Thankfully I come with receipts.

I carry my patient charts, a synopsis of my diagnosis, the side effects of drug treatment and a short “why I am here and for what.”

A radical change in size & texture on a cyst with no response to antibiotics is exactly what the last four doctors told me to watch for as it signals a need for active management.

Now this shouldn’t need years of bloodwork (which I brought and charted for them) or a paragraph on high risk patient needs or a history of my main medical issues and the rationale for why I am requesting imaging. It’s an abscess that’s growing so figure out what kind, remove it and then we figured out why.

And yet it does require all of this to get anywhere. I spent 5 hours in a doctors office today and two hours in one yesterday.

I’ll waste another two days while they will run new bloods when I have a fresh set from a week ago. And still they fought me like hell on imaging.

Which is the only way to decide on the course of treatment. Instead I should do warm compresses and iodine for a month (sorry the first four months not count?) The temptation to unleash is overwhelming.

It was a fight. I got an ultrasound. And I did get a diagnosis and it needs to be carried out asap. Figuring out a doctor and a recovery plan I trust is going to be hard but that’s a tomorrow problem.

Abcess. Filled with bad shit. There is a hair in it acting the part of irksome pearl. 17×13 mm diameter. 3 mm from skin so it’s not small.
Categories
Biohacking Travel

Day 1647 and More Sleep

Fifteen hours of sleep and a spa day does fix a week of disrupted sleep. I may need some more downtime of resting and recovery and maybe more water drinking before I have a cogent thought.

Rocky Mountain High
Freedom Thongs
Sweat it out
Categories
Travel

Day 1644 and Problems Behind Me Sleep Ahead?

I’ve got a comically large sleep debt to work off. My Whoop is screaming at me as it’s been 3 days of not quite getting in an adequate of sleep.

And it’s not as if I was enjoying great sleep for June. It’s possible my new Whoop hardware just has bee algorithm and set of standards as June was mostly dead.

First it was emotional “really in it feelings” that gave me a half night as I woke early as the upset remained.

Then the anxiety of preparing for a long trip while the aforementioned emotional impact hung unresolved (though I had cried it out) which made deep rest out of reach. Four hours is half of my usual needs.

The middle night between issues and my packing day didn’t get me much better sleep. It was a long day of logistics and I never quite came down.


Airplane sleep doesn’t lend itself to dreams

And then I was on an airplane and trying to catch some Zzzzzs but barely managed under three hours. I feel great as I’ve just kept on swimming great white shark style, but I know I’ve got almost a full night of sleep dent built up.

Still it’s hard to feel too badly about things when you look down on the beauty of the world below.

Leaving Montana
Categories
Emotional Work

Day 1642 and Really In It

I really spent some time in my feelings today which isn’t exactly how I wanted to spend my day. Though I couldn’t exactly tell you why I don’t expect to feel my way through the day. All real works requires you to balance the intuition of working from one’s gut.

The world is tense and our place in it doesn’t feel assured. Every time we experience a norm change or unsettles the balance of our social order.

It sounds so dramatic but we balance trust with the boundaries necessary to make choices that work for each of our own consciences. Some things are more the basic math of a situation. We need are feeling precarious.

As I do this writing exercise tonight there is a raging Rocky Mountain thunderstorm. They come on with such fury it can take your breath away. These storms are intense and rapid and blow in and out with inn half an hour. The atmosphere after has an uneasy calm. Rage is nature’s game not man’s.

They do drive you inside which is good as I have packing to do. I am venturing off and I’ll be feeling my way through that too. I’ll blow out myself soon and let the world show me where to go.

Categories
Community Culture

Day 1641 and Honor

The good vibes of my weekend have washed out on the tides as I consider a frustrating non-interaction that has grown into anger in my heart as rapidly as a wheatgrass seed grows in an Easter basket.

I am considering the question of honor in the context of closed communities and events. If you go looking, the cat is out of the bag on where I was and with whom, but I don’t yet have personal permission to use a name, so I’ll keep this brief.

I’m in my Worf era

I’ve been called many names in my time and plenty of them have not been laudatory. Dirty shiksa, stupid cunt, and mostly recently, demonic. Everyone being entitled to their opinion, I don’t generally ask for apologies. I do ask that you say it to my face though.

I am a shiksa, certainly “see you next Tuesday” from time to time, but I remain skeptical that I am possessed by anything from Hades or other Lovecraftian horror from the beyond.

But so long as you use my name in the process of insulting my honor, I only request you look me in the eyes while you do it. I can take it. I stand by who I am and what I say.

So I can’t shake the feeling that I was deliberately dishonored by the speaker. And I am actually angry now. I am used to the insult throwing and name calling of Internet living, indeed I thrive in it. I am not accustomed to aspersions by celebrities as I don’t matter all that much. And I certainly didn’t expect it in a small private group.

I fight in that arena under my own banner. I take those punches under my own name. I won’t lie, someone of stature being so upset as to call me evil without felt good at first (how nice to be noticed) and slowly curdled into a fury over the disrespect.

Maybe it’s because I was one of the few women speaking. It was only after much effort he agreed to speak with my male co-speaker and not me (I’d already left). Maybe it was because after multiple attempts at engagement I was refused time and again. Maybe it’s because his gaze remained staunchly averted. Whatever triggered it has now turned to fiery anger.

I think it’s a bitch move to drop bombs and then runaway like a kicked cur when the beast stirs. And I am quite wide awake now.

I’m the alien in this scenario
Categories
Community Travel

Day 1640 and Ebullient

Having spent a whirlwind 72 hours at a campout with weirdos I am in a very good mood. Minus getting called demonic by a coward who wouldn’t face me, the entire trip including the long drives was amazing.

It’s always a pleasure to spend offline time with real people. Especially when they disagree with you. Which happened a lot as it was a fractious group of eccentrics from all walks of life.

Technologists, theologians, farmers, military men, musicians, mothers, writers and even a journalist or two. We were missing a trucker friend and a former hobo (his wife is due to deliver a baby any minute now) but it was full in spirit.

We drove home through golden time with a sunset so brilliant it made me wish I could capture even a fraction of its beauty with paintbrush or camera. Alas it will remain a memory that is impossible to share.

Stopping for gas and getting Maxfield Parrish
Categories
Community

Day 1639 and Casting Aspersions

It is a poor craftsman who blames his tools. Much as I’d enjoy going on a sidequest exploring ethnographies of man and his use of tools, I have an agenda. My honor has been impinged.

At a gathering of eccentrics in Wyoming, myself & a friend engaged in an hour long discourse with our audience on the use of artificial intelligence and how one might practically understand these tools. The talk was more linear algebra than immanentizing the eschaton.

Our explicitly stated goal was to understand the technology stack and its capabilities so the audience could decide for themselves how to use or leverage this tool. The blurb I wrote introducing the topic.

Concerned that artificial intelligence will be a panopticon of horror? Afraid of nerds  immanentizing the eschaton? Jon and Julie have your back. Artificial intelligence is neither God nor imminent utopia but merely tools built by the hand of man. A practical discussion of how you can use these new compute tools to concretely impact the work & insight you need in your everyday life. Come prepared with questions, projects, and ideas as it will be interactive.

Our focus was on how these tools are built, what they can do and what they cannot do, and a firm stance that mathematics and compute are not imbued with divinity or demons but reflections of what we bring to them.

Indeed, we have never had more freedom than we do now to shape the weights and biases of these topological models. Our words on the public internet carry weight thanks to availability of fast compute and open source models. Our bigger issue is maintaining the capacity to supply energy and grid capacity. The real problems are human and social, much as we may wish to scapegoat a piece of code.

We were not suggesting a world ending chaos nor were we endorsing its use. We were discussing it as a piece of software and what it could do.

In a surprise to both myself and my co-speaker, the keynote of the evening spent a significant portion of his talk discussing how foolish, misguided and demonic we both were. Now the event has Chatham House rules for outside content or do I’d go into more detail.

However inside the event, the speaker could have done us the courtesy of saying our names when he made the suggestion that we are working towards evil ends.

He did not ask how we related to his positions and how we’d defend our word. At no point did he name us or address us. He merely cast aspersions.

Frankly I had no idea why he thought we were avatars for some kind of suicide squad as I doubt the gentleman is aware of MIRI or the myriad internal fights inside Silicon Valley. It was however insinuated to be true that we are the bad guys. It’s what we do.

I find this to be a cowardly position. If one holds such strong views that one would call two humans with honest intentions demonic at least say our names. We were in the audience listening intently.

So I will protest. In a past era, I feel that these heavy accusations would have been grounds for demanding satisfaction.

I am of the belief that the only way we manage the effects of adopting any new technology that impacts our culture is rigorously debating the merits from engineering to impact.

We are not asking you to trust us. We are instructing you in how to master this tool if you so desire and if it brings value to your life. We share many of the same concerns.

Alas (thankfully?) you are not summoning any demons that were not previously installed on the operating system of your soul. The shadow of humanity can be seen quite clearly in how we engage with the artifacts we call artificial intelligence.

I will continue to insist that insulting our positions without naming us or calling us to account in public is grandstanding. It was clear we were the targets of the criticism. It is poor form.

I’m an American so our manners may be different than others, but we do have them. So put some respect on our names when you say them in your real life subtweet.

We’ve asked to discuss it with him further through our host but he has declined. I frankly am delighted to find that I’ve had such an impact that I cannot even be named when raging against that machine.

One hopes a parlay possible. But it sounds like he would prefer to avoid us. This is of course fair on his part. I am however prepared to defend my positions. We all must be prepared to defend our actions in this age of change.