Tag: Emotions

Categories
Travel

Day 1675 and Running to Stand Still

The accelerationist types must be feeling smug as the disorientation caused by so much of the world speeding up is a persistent feature of life now.

I’m trying to organize a fairly elaborate vacation that I should have nailed down the details on at least a month ago. I am alas doing it what is functionally last minute and I’m panting at the effort of coordinating preferences, availability, timing and the thousand other logistical details.

We have a range of preferences to accommodate and it’s driving me a little bit nuts and I have no one but myself to blame. I cant manage more than three hours in a sitting position in a car or airplane without hurting. Standing helps but it’s really laying down and relaxing my spine that helps.

The other preferences are more of the one person likes fine dining and Michelin caliber restaurants and another likes delivery and Netflix.

We have to balance intensive activities in hot weather like hiking and sightseeing against the desire to lay out in the sun near a body of water. Really all the classics of different strokes for different folks.

I don’t want to be too ambitious about any of this as I am really just barely out of the woods from July. And I’m being vague about when and where, as I’ll like pretend like we have some amount of operational security. Writing is all about the specific but the best I can do is say it will involve driving and water.

Categories
Chronic Disease

Day 1670 and Bile and Spleen

I am, as per usual, having a shitty summer. Once we cross the Solstice it’s me hanging on to sanity by ny nails praying for the return of winter.

I can’t recall a time I had a good summer except perhaps jn the hazy memories of my early twenties when I was probably too stupid, traumatized and physically healthy to know one way or another.

Now I’m smarter, sicker and I’ve done enough emotional work to actually feel it all. Don’t knock that desensitized disassociation kids you may miss it when it’s gone.

Maybe it’s simpler than that. Back in the aughts & the briefly booming Obama ZIRP teens, our global climate weirding just had not hit New York City hard enough for me to have really bad summers.

I always had a window air conditioner and enough cash to run it. Either way, a summer where I wasn’t miserable isn’t a memory I cant access now. It’s sealed off under the pain of the now. The past being a foreign country and all.

I’ve certainly not had a good summer in the last decade. I’ve got daily tracking data from the last six years of my life and the summer is just an unending torment of bad biometrics, pain, cabin fever and seasonal affective disorder. Bet you didn’t know it has a summer variant did you?

I’m always sicker when it’s hot. So it’s just bile and spleen for now. Almost enough to make me want to toss the entire daily logging project till the torment lifts. Since I won’t do that I’ll pour the misery on page.

I can’t wait to see what August has in store for me. My cold comfort is knowing I will be enjoying a long week of financial news. At least that you can do indoors locked up under the air conditioning.

Categories
Medical

Day 1661 and Please Let This Be Over Soon

I am hanging onto my sanity by a thread as I round the corner of a surgery I did not expect. Well, I’m eight days out from it, so slightly more than a week.

I’m hoping I start to feel gets better soon. It’s my first day without antibiotics and I am already certain I shouldn’t be off them. As horrific as the side effects of Cipro may be, my immune suppression on Bimzelx is leaving me shockingly open to skin infections.

I’m terrified of MRSA at this point. I was taking doxycycline for another skin infection when the cyst went around the bend to “septic fears” on me so I’m a bit twitchy about the entire situation.

The prior IL-17 seemed to strike a fine balance on suppression and capacity to fight off infections. Now my biometrics are better but I’m constantly fighting off chaos with the meiborn gland nonsense and now buried cysts from sideways hairs fracking my dermis.

Maybe I’ll turn a corner and have some better writing ahead of me soon. Until that happens please forgive my poor blogging and missed emails. At this point the singularity could arrive and I’d miss it like a character in Left Behind. I’ll probably miss the rapture at this rate.

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.