Tag: Medical

Categories
Biohacking Medical

Day 927 and Standard Operating Procedure

I’m going to be nursing my husband through oral surgery recovery this week. He’s run out the clock on wisdom teeth and they all need to be removed.

We will miss a few obligations this week but such is the nature of medical need. Necessity doesn’t always come when you want it. If we don’t do it this week we’d be waiting till November for the next appointment. Such is getting medical care in this day and age.

I’ve been in a bit of a frenzy preparing as I myself have some medical issues that are chronic so if we are both fucked up physically it gets a little tricky to manage routines. Particularly because we live a little bit country these days in Montana.

I’ve gone down a deep rabbit hole of procedures for surgical recovery. I looked up standard operating procedures for inflammation and surgical recovery from every source I could find. I consulted with our doctors. I looked at risk factors.

You’d be surprised at how optimal procedures differ from the standard median recommended ones. The fear of overprescribing pharmaceuticals runs pretty rampant even when it’s clear that some protocols would be beneficial like say post surgery prophylactic antibiotics. The NIH, Mayo and Cleveland Clinics agree it’s a effective way of preventing complications related dry socket. The condition can turn into a painful infection that is relatively dangerous if it gets out of hand given it’s proximity to your brain.

But we can’t make an antibiotic standard operating procedure as it’s not technically necessary. Especially since we have prioritized using less antibiotics overall as a public health policy for the wider social good of preventing antibiotic resistant strains of bacteria. Good of the many versus good of the one. I’ll admit I’d be inclined to say that my husband deserves the Spock treatment even if it is illogical.

I’ve written out an hourly schedule for the recovery procedure I intend to follow. I won’t post it all here as it’s obviously not in my best interest to disclose it. It’s involved and intended to reduce inflammation and have the maximum pain management that is responsible so that my husband’s body can recover quickly with no unnecessary stress.

Proteins powder, bone broth and soft foods

It seems as if a lot of recovery comes down to simply retaining adequate electrolytes balance with enough liquid calories. You have to meet a macronutrient balance that gives enough protein to knit the tissues and not make the body think it’s resource constrained. Which is harder than it sounds when you can’t chew or even suck on a straw.

I’ve got a number of techniques to leverage from lymphatic drainage massage to the woo woo options to reduce stress and promote recovery and I intend to use all of them. And yes I’m available for nursing.

Categories
Biohacking Chronic Disease

Day 919 and Thin Skin

I am experiencing very palpably the literal meaning of being “thin skinned” this week. All the areas where my skin is thinnest (eyes, lips, fingers, and other more delicate spots) are inflamed.

I’m beating back some kind of this autoimmune response to having some pets in the house with everything I’ve got, and have thus far kept it from cascading but only just. It’s taken a lot of pharmaceutical intervention. I’m high on anti-histamines, cranky from the itchy, and fearful it’s already turned into a systemic infection.

I’ve got some animal allergies that I’ve kept from being isolating and overwhelming by simply not keeping pets inside. I can usually tolerate some exposure if I’m very careful with hygiene. Please ask me about my psychotic indoor clothing routine. And yes it was developed with an allergist hospitalist when I was 15. I’m beyond embarrassed by it.

I suppose this approach might make more sense if you knew that I’ve had my immune system rebooted with drugs as diverse as cyclosporine (they use that for organ transplants) and chemotherapy injections (methotrexate the WWI superstar).

I take regular immuno-suppression for ankylosing spondylitis which is functionally psoriatic arthritis in my spine. I have inflammation inside my body & outside on my skin depending on the flares. And I’ve done everything I can for it from allergy shots to 4 separate daily antihistamines

I am more reactive to my environment than your typical take a Benadryl allergy type. If you’ve seen that video going around of the 300mg THC pizza joint and thought “what the fuck who has that kind of tolerance” well I’ve got that kinda tolerable but with allergy medication. I can toss back 100mg of Benadryl and remain conscious.

I’ve got no Darwinian explanation for how someone like me is an end point for evolution except that we must value the extremely sensitive for some less legible but nevertheless crucial pro-social function. Maybe we spot the danger sooner? I truly do not know.

But I am thin skinned. I’ve been trying to manage additional allergen exposure all week as we’ve had dogs in the house that I very much would like to be able to tolerate.

I really thought with proper medication and cleaning I could keep reactions to a minimum. I didn’t want to make it a thing. And it would seem the reward for being thin skinned is actually having to inconvenience people by telling them that my having thin skin has consequences.

It’s unlikely I can get my symptoms down without having a total reprieve but we’ve done what we can. We didn’t resort to steroids so it could have been worse. Though part of me wishes we had as some skin is beyond uncomfortable.

I feel both embarrassed and frustrated that no one noticed my discomfort till I had to say I can’t tolerate it any more.

It makes me feel like I don’t matter unless I come with a story of misery and pain. Having to speak up for needs with extremely firm uncrossable lines always feels like abandonment to me. I wish people would see the discomfort, misery and isolation isn’t a choice so much as a medical necessity. I do my best to manage it but it’s easier when it’s a shared priority.

Categories
Emotional Work

Day 900 and Let It Go

It’s nice to have another milestone day on my journey to write every single day. One hundred more days of writing till the big milestone that seemed unreachable when I began.

I have so much constancy to be proud of as I look at the body of work I created. I gave myself permission to let myself show up every single day and just start doing shit.

It wasn’t always good. I have up and down days of quality, quantity and even basic legibility. But because I have let myself be free I came with a week of bangers.

I am trying to let a lot go at the moment. Family is sick. A few are so ill we fear for their imminent loss. The world is shifting and the sense of change and acceleration towards something is palpable.

So many of us are fearful. But what else can we do but let it go? Wasn’t that the point of Disney’s mash hit? It’s a relatable multi-billion dollar franchise because it’s reflecting the human condition.

There is so little I have control over in my life. But I also have so much agency. If I chose to accept my life, and the choices it offers, I have so many possibilities

The present is here with us with all its many demands. Don’t borrow trouble from the future. Live your life prepared to let go of what you cannot change with as much responsibility and agency as you can for what is up to you.

Categories
Emotional Work Medical

Day 896 and Watching Pain

Two of the people closest to me emotionally are having bad days. I’d like to discuss what it feels like to watch someone’s pain when you yourself are intimately familiar with pain yourself.

It hurts to watch someone else in pain when you yourself know how much it takes from your spirit and how little it gives. Because you see, I know now that pain simply is, just like nature, death, & grief. There is no moral valence to suffering. It is a lie that our culture loves to tell that pain is a good teacher. Ben Hunt of Epsilon Theory wrote beautifully about being in the grip of totalizing pain.

They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.

Ben Hunt

America is in a pain crisis. Most of it is chronic and challenging to treat. It’s worse for our most vulnerable who struggle to be treated because we see pain too often through the lens of shame, punishment & physical dependency. We only admitted to the problem because the opioid crisis brought into stark relief that the kinds of pain we are in are rich, varied, traumatic and systemic.

But it’s important to remember that pain is personal. Mine comes from a chronic spinal condition called ankylosing spondylitis. And it comes and goes. Other people have different pain. And it’s hard to articulate no matter who you are.

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

Day 183 and Pain

Because pain is both absorbing and fleeting, we need our loved ones to witness it. Without the framing of someone outside your experience, it’s easy to become lost in the pain. The other side of this is we forget how to grapple with pain when it strikes unexpectedly as our memory kindly looks to remove it leaving us open to suffering when it reappears. Others bearing witness helps with both.

I won’t sugar coat how much of a challenge it is to watch someone suffer through pain. The first instinct is often to leap to solutions and caretaking. Which sometimes our loved ones may need. If they are lost in pain and unable to help themselves the saving grace can be someone pulling you out with reminders or rendering of treatments.

That being said, you must remember to ask before you care for someone. Simply going straight to your preferred solutions may not be what is needed. Be gentle in doing so being invasive can worsen the suffering. Respect the agency of those in pain by asking if they have a preference for how you engage with them in their pain.

A simple example from my own life today. I asked my loved one if they would prefer to rest rather than engage with me as I know when I am in pain my preference is to lay down. I framed my pain in relation to theirs.

But crucially I followed that relating assuring I did not presume this was their preferred outcome or experience but merely that it’s mine and that I’d like to know theirs. Do not presume that a preference you have is someone else’s. Always ask upfront.

Maybe they want company, or a medication, or a distraction or a myriad of other possibilities. There is no one cure for pain. But it is eased by the love of those we love in return.

Categories
Chronic Disease Travel

Day 889 and Soul Delay

A girlfriend asked me if it felt good to be home in Montana. I said I wasn’t sure as my soul hasn’t landed home yet. I think it might be somewhere over the Arctic at the moment.

She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.

William Gibson – Pattern Recognition

I don’t feel like I’ve really landed yet even though I’ve been home for a full day. My body is going through various forms of blowback and regression as I resorted to Prednisone while in Europe.

I’m itchy and in pain and simply going about my routines despite it all. Rhythms and processes run my life because I’m a traditionalist. What you do every day is what you become.

Everything physical I do has a cost and nothing is higher cost than travel. I am bearing those costs at the moment. Blessedly the costs feel removed and remote as I am a perhaps disassociated as my soul may or may not be somewhere over Greenland.

So if you’ve not heard from me it’s because I’ve got a bit of soul delay with my jet lag. Or a bit of jet lag with my soul delay. You can expect reintegration soon.

Categories
Travel

Day 886 and Breaking Camp

When I travel I prefer to set up a base camp. I do things from one place regionally for a month. I have a lot of accoutrements that come with me and I travel. Having a disability like a chronic spinal autoimmune condition is a huge pain in the ass.

After I have my set up I try to run with a regular daily routine when I am abroad. Additional stresses like jet lag, heat, new allergies, a suppressed immune system that easily picks up a stray infection (skin is my most common vector not lung these days), and other more quotidian travel stresses all hit me hard.

I do my best to take care of myself when I travel as any hitch in my routine can mean lost productivity. I plan my trips meticulously.

Today I am breaking down those routines. Packing them back up into my three bag cascade crisis management packing solution. Because what can go wrong will go wrong so plan for every scenario you can envision. Then you pray the unknown unknowns don’t get you.

Travel is an elaborate cost benefit analysis for me. If you do what you love you will never work a day in your life. And I do love calculating my inputs and seeing if my outputs breaks as predicated.

If not then I learned something new about what to model for next time. Breaking camp is where I see what I can improve. And what I did well. Everything has its cost. And I take responsibility for it.

Categories
Chronic Disease Travel

Day 882 and Disability & Energy Policy

I hate when I am made to feel it is embarrassed and ashamed that I have a disability. And German’s current energy policy has me feeling like my medical needs are something of which I should me 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 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 on 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.

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
Travel

Day 860 and Get What You Pay For

I flew a new airline on a transcontinental overnight. The airline is called Condor. The business class offering from Seattle to Frankfurt was very reasonably priced so when my husband said “let’s do this one,” I didn’t question it at all. He knows what he’s doing.

Perhaps I should have asked more questions. When I arrived at the check-in counter, I was surprised to learn that there was no assigned seating. You wait to be assigned at the gate and it is done first come first serve even in business class.

I wasn’t pleased with that situation at all, as I had to bring several medications with me including an expensive refrigerated IL-17 inhibitor. The gate agent told me my carry on was too heavy (it was 10kg) and instructed me to unpack as much as I could into my checked bag or I’d be forced to check the carry on as well. I stripped my carry-on to just medications and basic clothing, losing most of my electronics and work gear in the process.

At the TSA Pre-Check security line the guard tells me she has to throw out “my water bottle” as it’s had too much liquid. I do my best to explain that it’s actually a frozen ice pack inside a bottle meant to keep my injections cold for 24 hours without refrigeration and has perhaps melted a bit in transit. Thankfully she let me through once I pulled out the medicine.

Once I got to the gate I made a second attempt to secure an assigned seat. I got in a long line at least ten people deep. As I was in line it extended to well over 30. The area was packed with families ranging from elderly grandparents to anxious babies.

The gate agent said if I was at the front of waiting line I’d be more likely to get assigned a better seat but she couldn’t assign me one. This meant it was more likely my bag wouldn’t get gate checked. But I’d have to wait for them to call me for my assignment which happens during boarding. Weird.

I didn’t have it in me to fight for a seat and stand in a line for two hours so I kept asking how can I get an assigned seat? Are there any options to get a seat and priority boarding?

I’d assumed a business class product default came with them. But then again I’ve never been asked to repack my entire suitcase to overstuff my checked bag so my carry on could get under 8kg either

I’m glad I label everything when I pack and keep every category of item in separate packing cubes. My 3 bag cascade system for avoiding losing crucial items to gate checking and bad seating assignments came in handy. The effort was not wasted.

At the check-in area before security, the agent mentioned something about upgrading to Prime which was $300 and that was the only set of assigned seats the airline does. I was too confused to pull the trigger on buying it before I cleared security I thought surely the gate agent will find another way to get me an assigned seat. Nope! The only assigned seats are the prime ones. So feeling defeated and confused I paid up.

This long jet lagged story does have a happy ending though. Despite the confusion and chaos of having no assigned seating for business class, once I paid for Prime boarding the actual seat ended up being great.

My seatmate was an extremely cool and very stylish woman who I ended up bonding with over the length of the flight. She’d had a similar experience to me being confused by the lack of seat assignments and also paid up. We even exchanged phone numbers. So the $300 was worth it to meet her. Hi Fatima!

But if an airline doesn’t assign you seats or guarantee your priority boarding with a business class product I think maybe you need to consider another name for the product. Like international gladiator style flat lay perhaps. And maybe next flight I’ll fight it out. But this time I’m glad I paid up.