Categories
Chronic Disease Emotional Work

Day 636 and Waves

Yesterday I was on top of a wave of positivity, so naturally this means today I was prepared for that wave to crash. The rhythms of both life, and my body, must accommodate the full range of highs and lows. After several intense days of work and activity I spent my day reading and absorbing news and financial reports in bed.

I am becoming modestly less indignant about having to monitor and meter my energy carefully. This is a new development in some ways as I’ve struggled quite publicly with mixed feelings about accounting for fatigue and pain in my workflows. I have in the past easily fallen into envy and jealousy when I see how much able bodied friends give little thought to their physical realities.

I have slowly let go of negativity around around around my body and come to embrace the rhythms of requiring rest. I’ve even come to see it as a strength as being forced into mitigating stress loads and cortisol spikes means I have more control over my sympathetic nervous system. Rather than give in to fight or flight, I am able now to able to choose how I respond.

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Emotional Work

Day 635 and Wide Horizons

I am absolutely wiped at the moment as I rode a wave of enthusiasm all day. I felt focused, energetic and free of self doubt. I felt like my life was open to possibility.

Perhaps it’s the regular reminders of personal responsibility I get in therapy. Perhaps it’s it’s the sense of accomplishment I got from completing my wilderness medical incident certification last week. The case of the Yips that I felt a few days ago is swiftly resolving.

The strength in my marriage with Alex has always been our commitment to working through our emotional journeys together. He was able to be reassuring my through slow climb back from the depths of my health challenges. He helped me turn it into a source of strength. Next year will be ten years together and Alex really got the “in sickness” portion of the vows a little earlier than anticipated.

This is the first time in both of our lives we’ve ever truly been stable. And that’s a strange thought. That our lives have been so chaotic for so long. We finally have money and a home we own and good health and it’s all at the same time. All of the instability of startups and limited resources and bad health are over. And only really in the last six or seven weeks has that been true. As we just finally bought our first home. We moved to Montana in August.

We climbed through the aftermath of the Great Recession together, made our first angel investments together, raised venture capital together, and now finally thanks to the pandemic we’ve been able to secure a place to live and a wide horizon to plan how to use our resources and time. I am responsible for talking this blessing and letting it provide the foundation for our long term goals. Millennials might just accelerate in middle age just yet! I know it feels like I am.

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Emotional Work

Day 634 and Responsibility

The best part of committing to therapy and emotional work is taking responsibility for your feelings. This is also the worst part of doing any kind of emotional growth. I suppose this is how you know therapy is a worthwhile use of your time.

Emotional work has a bit of the “wherever you go, there you are” tension of acceptance. I’ve also come to appreciate the truism that having is evidence of wanting. We are always living exactly the lives we want. Attachment and delusions and self limiting beliefs are all part of the way we protect our ego.

I’ve got a lot of my identity wrapped up in my coping mechanisms. I’m sure this is quite relatable to many people. If you are willing to be a vulnerable you start to see just how many habits and behaviors are built to protect yourself.

For me I have found comfort in overworking. If I crash and fail I protect my ego by saying little stories like I’m fragile or have high standards or whatever else seems acceptable. When of course, I could have simply made different choices to accommodate my physical state or the expectations I had for quality.

But accepting that I am ultimately responsible for my strengths and weaknesses in equal remains elusive. Personal enlightenment is a minute by minute experience. Ego destruction isn’t easy.

I try to remind myself that any traumas I may have experienced that enabled the development of these coping mechanisms are in the past. I am now the parent to my inner child. And no one is responsible for her happiness but me.

Categories
Aesthetics Travel

Day 633 and Hospitality

One of the things my husband Alex and I were most excited by when we bought our homestead in Montana is inviting our friends and family to stay with us. We have an entire floor of the house dedicated to guests and have plans to turn part of our barn into a separate guest house as well.

We’ve begun the process of designing and furnishing our guest floor. We have two rooms, a bathroom and a separate living room. The furniture is slowing turning up. Which means it is time to work on the details of making it as comfortable and hospitable as possible. Naturally we asked Twitter to weigh in on what makes people feel at home in someone else’s house. And you did not disappoint.

Toiletries

Traveling with full toiletries and skincare can be a challenge especially when flying. Here is a list of the most requested grooming items and toiletries

  • Hairdryer
  • Roundbrush & Styling Tools
  • Shampoo & Conditioner & Body Wash
  • Lotion & Body Moisturizer
  • Skincare Basics (SPF, Face Creams)
  • Skincare single use masks for face & under eye bags
  • Dental Care (Brush, Paste, Floss)
  • Small Individually Wrapped Soap
  • Q-Tips & Cotton Rounds
  • Tampons & Pads
  • Tissues
  • Bandaids & Pimple Patches
  • First Aid Items (Headache, Allergy)

Bathroom Comfort

Grooming items isn’t the only thing that you need in the bathroom. Personal hygiene requires some thought.

  • Trash Bin
  • Dark Towel for Makeup Removal
  • Plenty of Extra Bath Towels
  • Wash Cloths
  • Hair Towel & Turban
  • Extra Towel Hooks
  • Plunger & Brush
  • Bidet and Squatty Potty
  • Septic Care Sign
  • Cleaning Items
  • Extra Toilet Paper
  • Tissues
  • Poo-pouri or matches to mask smells

Organization

Keeping your personal items from overflowing can help make a guest room feel more comfortable. Remember power strips & plugs! Some of the most requested items include:

  • Pens & Notepad & Scissors
  • Desk Power Station
  • Bedside Power and USB
  • Hangers (including pant & skirt)
  • Trays/Landing Zones for small items
  • Coat Hook
  • Dresser & Closet Space
  • Full Length Mirror

Bedding and Sleeping

Getting a good night sleep in a new place can be very challenging. Providing for your guest’s sleep and relaxing needs was a top request.

  • Extra Pillows
  • Hypoallergenic Options
  • Duvet Cover
  • Robes & Slippers
  • Dirty Clothing Bins & Laundry
  • Dimmer & Good Bedroom Lighting (not too bright, preferably lamps)
  • Books & Reading Materials
  • Nightstand Space (w/ power & USB strips)
  • Eye Masks & Earplugs (ideally also blackout curtains)
  • Water Glasses & Jugs
  • Wifi QR Codes
  • Speakers or White Noise Machine

Other requests including desks and working areas. Our current plans are to have adjustable standing desks and ergonomic work chairs in each bedroom. Plenty of landing spaces and areas to keep your items visible but not cluttered (including luggage stands) is also commonly requested. Separate sitting, sleeping and working areas is best. Also a surprisingly large number of people suggested a white board. So clearly our friends like to brainstorm on the road. External monitors and keyboard were also mentioned.

We have plans to write a basic FAQ document that includes things how the house works. We will include details on water filtration (we have an expensive filtering system so you can drink from any tap in the house), where food is kept and expectations on hours and interaction. Also details on things like heating and cooling are crucial for comfort. People should be able to maintain their ideal temperatures for sleeping and working.

We are also planning to outfit the guest common areas (private to guests and separate from the house common areas) with a mini-fridge stocked with favorite beverages and snacks. Having a coffee maker and tea service was a popular request as well. We are also considering extra boots and outdoor gear for city guests that do not have country gear or simply cannot travel with Wellingtons and barn coats.

Another huge area of interest was maintaining health and fitness. We have a full gym including squat rack, pull up bar, treadmill and a Pilates reformer along with mats for stretching and yoga. We’ve got a Theragun, medicine balls & foam rollers. I am also keen to have supplements for basics to keep your immune system happy like Vitamin D, C and Zinc. We also have a hot tub and have plans for an infrared sauna (might even include a cold plunge).

If you’ve got hospitality suggestions we’d love to hear them. And of course if you are one of our many virtual friends we’d be delighted if you’d consider becoming an “IRL” or in-real-life friend by coming to visit us. We are booked through October but would be thrilled to have you come for ski season!

Categories
Medical Preparedness

Day 630 and Sympathetic Nervous Response

One of the downsides of having any kind of medical bullshit is having to keep an eye on yourself. If you over do shit you’ve got no one to blame but yourself.

I’ve been doing a wilderness medical incident first responder course this week. I initially went into it slightly concerned with my ability to physically keep up given my ankylosis. I was easily the odd duck out in a group of former military folks, paramedics and wild land firefighters. If I’m honest I didn’t want to embarrass myself by showing too much frailty. I was already the only woman in the class. I didn’t need to be the cripple on top of that.

But over four days I’ve managed just fine. I did wound packing and splints. I did a number of incident scenario responses ranging from anaphylactic shock to heart attacks. I even did multiple mass casualty response drills. Today I managed one as a triage incident deputy and comported myself quite well.

I was feeling pretty cocky about how well I’d managed through the week. I was enjoying that sense of accomplishment right up until 5pm or so today when we had our last assignment of the day. We’d just finished up a drill with five patients who had been caught in a tornado. It was an hour of field work and triage outside. I was thinking alright maybe I’m getting the hang of thing. But no I was about to embarrass myself on one of the easiest tasks in the course.

It was time to pack up our own medical kits. We got a big baggie with all the supplies we could possibly need for our our first aid kits and dumped it out on the desk. Our instructor began going over all the items and how to pack them up into the bright orange brick that serves as your kit bag. I was doing my best to follow along but my brain was just not having it. I kept trying to figure out what items went where and how it was meant to go. And I was not remotely keeping up with the class or the instructions.

I’m starting to feel overheated and I’m struggling to concentrate. And it’s then I realize “oh shit I’m in a bunch of pain” and I realize I haven’t taken my pain medication for hours and it is starting to show. I just ran around in a big field doing triage for an hour. So I think to myself well I’m having a sympathetic nervous system spazz out. The pain and fatigue is sending me into fight or flight and I’m losing decent coordination and fine motor skills. I am becoming one of my own patients.

I didn’t finish packing out my kit. I had to excuse myself. I briefly considered if it would be funny to have a medical incident in a first responder course. But I was fully capable of treating my own acute stress response. I was getting worked up by an inflammatory response from my ankylosis and low and behold the pain in my spine was going to spike.

The end of the story is that I’m in bed and the non-steroidal anti-inflammatory drugs have kicked in. My pulse and respiration are fine. I’m no longer in fight or flight. And yes I’m a little embarrassed that packing a bag is what did me in. But on the other hand, that’s a very “Julie” way to learn a lesson.

Categories
Aesthetics Biohacking

Day 624 and Goblin Mode

A trigger warning for folks. This post contains discussions of poor eating habits, food trauma and possible eating disorders.

As much as I like being a bit of a loner, I am often comically inept at having to take care of myself. My husband has been busy with work and I have been left to my own devices to manage cooking this week. Let’s just say it went a bit poorly. Or at least it was comical. My husband is practically a chef and I can barely microwave a hot pocket.

I’m exactly the sort of person that Soylent, the tech bro reinvents NutriSlim beverage, was designed to appeal to. I am easily overwhelmed by the thought of even basic cooking. I’m extremely picky about texture, smells and presentation (thanks autism). And if I’m really honest I just don’t want to eat anything that isn’t perfect. So if it’s not exactly what I want, I might has well have a nutritional slurry. I hate to waste calories in unappealing food so I’d rather get in my macronutrients and vitamins.

I’m embarrassed to say that I did exactly that for a few meals this week. I tossed 2 scoops of protein powder, a scoop of vitamin mix, and some GI stomach support into a glass of water and called that dinner. Even lower rent than a packaged shake but probably healthier. I got 35 grams of protein out of this bad boy.

A protein slurry in water.

I realize this sounds like I’ve got an eating disorder. And maybe I do. Before anyone has a clue that I might be autistic I had some knock down drag out battle of wills with doctors.

One of the defining traumas of my childhood was my pediatrician telling my mother I needed to eat more dairy. I hated the stuff and refused milk & yogurt as small child. My doctor’s solution (and I am not making this up sadly) was to not allow me any food till I ate dairy

Julie Fredrickson from Day 368 Eating Disorder Season

That story doesn’t end well. I didn’t eat the dairy. I passed out. Starving kids into compliance is perhaps a bad idea. But it did leave me with a sense of comfort and control with fasting. If I cannot eat for any reason I know I will be able to manage feelings of hunger. So not a total loss.

I have enjoyed some of this feral goblin mode stuff but I’m glad that Alex is back at his cooking now that the week is over and it’s Friday. Pulled pork is definitely better than nutritional slurry. Well, sometimes slurry has its place.

Categories
Emotional Work Uncategorized

Day 623 and Pausing

I am feeling a bit anxious about back to work season. I’ve traditionally had a terrible relationship with work. I’m a workaholic and struggle to pace myself effectively. I particularly love riding on the zeitgeist of a season like the fall as “everyone” is back at the grind and I like to ride the energy of the moment.

But I also need more frequent and shorter pauses than the American work week or season has ever allowed. I’ve always been afraid to take them because I fear being seen as lazy. “Only the morally weak rest” is a truism of English and Germanic lineage well prior to the Reformation. Though that’s kind of an aristocracy needs the serfs working thing.

But Protestant Work Ethic aside, I’m not really cut out for hustle culture. Being disabled, even modestly with something my spondylitis, is like the double whammy of being weak and lazy. I need to maintain a different schedule because I cannot overcome the foibles of my own body? That’s an affront! I’ve got a lot of self talk that basically goes like this

You soft feminine pathetic weak bitch get your ass back to work.

Me to myself. Sadly.

Does someone have internalized issues with feminine cycles? Oh yes she does! I guess it’s not just being lazy but it’s being female and a waste of productive worker all in one body. Super fun! And yet here I am a libertarian and I work in finance. Square that circle my friends.

Capitalism has enjoyed patriarchal structuring because it allows us to categorize the inconveniences of bodies that are harder to regulate. Women in the workforce was a pain in the ass until we figured out chemical birth control I’ve got to assume.

But all these legacies of who is worthy and who is strong and who is valued are kind of bullshit constructs. I can take what serves me. I don’t need to get all up in my head about having a less productive body because who even set the damn standard right?

So I am reminded I can pause without crashing. I choose to pause at my own leisure. I can choose to self nurture so I operate from my own point of maximum strength. I have to chose to pause. A pause is not is weakness.

A pause is like the ocean cresting before the wave breaks. And I can choose to ride that momentum. This is all a part of my own work on not just surviving the current moment but thriving with optimism. It’s peace from strength. While I recognize and even ride the chaos outside, I do not feel chaotic inside.

Categories
Chronic Disease

Day 621 and Pain’s Anxiety

Before I was diagnosed with my spinal condition ankylosing spondylitis, I didn’t really understand that I was in pain. I know that sounds weird, but I just knows I felt like shit. I hadn’t yet pinpoint the origins of the crisis in my own body. I was a stranger to myself.

Back then getting a diagnosis involved a lot of questions about my mental health. Are you anxious? Would you consider taking an anxiety medication just to see if it help? Are you sure it’s not all in your head? No doctor I’m not sure of anything that’s why I’m asking you.

The thing is I did feel anxious. My central nervous system was in a perpetual state of fight or flight from the pain. I had tachycardia. I was twitchy. I wasn’t a sleeping well. I didn’t want to be touched. It hurt too much. I was exhausted all the time and felt overwhelmed that no one seemed to know what was wrong with me. I’m lucky no one asked me if I was depressed or I might have been put on Prozac.

I’m one of the lucky ones. My chronic disease has a simple blood panel and physical exam to diagnose it. It only took me a few specialists to get to a rheumatologist.

I fear I would have been given an anxiety diagnosis and told it was all in my head if I’d had something more complex. But thankfully we untangled that any anxiety or depression I felt was simply a function of being in an inflammatory condition so acute every movement was painful. You’d have a racing heart and a fear of movement or touch too if everything was painful to the touch

The thing is I am scared of my pain. I do regularly get caught in fight or flight fear responses if the pain appears and I’m not prepared for it. I am militant about certain aspects of self care and my biohacking as I fear flares. I fear the drugs that are required when it isn’t controlled. It makes me anxious to need drugs at all to control my symptoms. Especially in America where a war on drugs has made it hard to need anything stronger than Advil.

Everything about pain and it’s treatment is anxiety inducing in America. And that’s a hard comorbidity to live with in a disease. As if pain wasn’t enough, the latent fear that you might not be believed lingers.

Categories
Preparedness

Day 620 and AQI

I am in the throes of a horrifying migraine. The take two Imitrax and pray type. It’s also the nausea inducing type so I’ve not eaten all day. I feel awful. And it’s mostly not my own fault even though I often like to blame flares in symptoms on my own lack of discipline or purity in maintaining some Platonic ideal of lifestyle or wellness regimen.

It is fire season in the west and I’m sure some, if not most, of my migraine is tied to the horrifying air quality that is choking out thousands of miles of California, Washington, Oregon, Idaho and Montana.

An AQI reading of western America on September 12th at 3:48pm Mountain Time from PurpleAir

The AQI or air quality index in my neck of the woods is 160. Unhealthy for sensitive individuals is the coy and somewhat misleading phrase used. It means in practical terms visibility is so bad I can’t see the mountains a few miles away.

Montana is at the moment free of any major fires. Our colder temperatures, lack of pervasive fire beetle blight, and reduced density makes it statistically safer than the Colorado front range when it comes to total fire danger. But it’s no safer from prevailing winds and the pollution from fire in other states. In order to escape from it entirely I’d probably have to leave the continent.

I’ve obviously opted not to leave my home region of the mountain west even if I have accepted moving to a more northern and protected corner of it. But there is a certain existential “No Exit” sense I have with AQI and fire season in general. It may just be my lot in life. Maybe it’s everyone’s lot. To give up your homeland is a complicated fight. I expect for some of humanity it must involve either certain death or the prospect of great riches

Categories
Chronic Disease Politics

Day 618 and Personal Politics

I hesitate to share too much detail about this but, I’m an opioid user.

Actually I’m not hesitant to share that at all, it’s in fact the core salient point I want to make today. I have a chronic disease and sometimes, blessedly more and more infrequently, it can only be effectively treated with pain medication.

Why am I talking about this? And in public no less? Because unless powerful people that have a degree of social, personal and political capital discuss things we deem unsavory we never make any damn progress on humanizing our inhumane responses. And our response to the opioid epidemic is inhumane.

The backlash to the crisis, a mash up of intense scrutiny, government intervention and rigid rules, has now reached a point where it is doing as much harm as the original crisis of overprescribing. And I hope my personal story allows you to see why.

My spinal condition (ankylosing spondylitis) can be so debilitating that the only way I can get out of bed to accomplish basic tasks is by taking a mild opioid called Tramadol. It’s not in the same category as OxyContin or Percocet but it’s not risk free either.

I’m lucky that my condition is relatively well controlled. I don’t need pain medicine all the time and I work very hard on alternative treatments in the hopes that I won’t need it at all in the future. I spent a small fortune making sure I don’t need a core useful medicine. Let that sink in.

I’m not an addict. I am monitored by a team of professionals. Every step of the way is in fact monitored extensively by state and federal systems along with massive insurance and hospital system oversight. It’s the closest I’ve come to experiencing the Panopticon. It’s life altering in its scope. My entire life by necessity has to revolve around when the system deems it safe for me to get a prescription. Not when my doctor thinks I need it. When Uncle Sam does.

I fucking hate relying on something so dangerous and so demonized but also so regulated. I hate that my entire private medical life is so closely monitored by the state. I hate all of it. But, on very bad days, the choice is immobilization or Tramadol. And I’m not at all ashamed to say I pick Tramadol. I want to be a working productive member of society and that’s hard to do when you are unable to move from the pain.

There is no grace in suffering but what it teaches us. And I’ve learned we use pain as a cudgel to control people in our society. That it is so effective is why I am both a libertarian and fiercely against the carceral state. One day it might be you suffering and you won’t deserve it either. And I pray that you will be shown grace in your personal circumstances.

But I’m lucky. I’ve got other pharmaceuticals, like biologic injections which treat inflammatory conditions, that I can rely on. I’ve got THC and CBD for their anti-inflammatory properties. I’ve got good old fashioned steroids like Prednisone. Which interestingly, my physicians universally believe is more dangerous than my Tramadol usage and did actually require an extended titration down as I was physically dependent on it, as your body stops producing the necessary hormones. They’d rather I use Tramadol for flares.

But you notice the government isn’t up in your face with a massive publicity campaign showing cops busting down Prednisone rings. There are no political advertisements showing how an opponent supports big steroid. Even though if you saw Donald Trump after he got Dexamethasone during his fight with Covid it was pretty clear he felt pretty good. Steroids have gotten me far more fucked up and also higher than any opioid ever has. But no massive surveillance program has ever come down on anyone for anti-inflammatory drugs.

Because that would be fucking ridiculous even though it’s just as addictive in driving physical dependencies , just as debilitating and depending on your body chemistry, just as “fun” as narcotics. Fun fact about me, I don’t have whatever chemical makeup that allows an opioid to give me a high. Which as I’ve learned is a saving grace. Not everyone does. That’s kind of the rub. The risk profile on opioids is a bit worse because some pharmaceutical executives lied about the percentages of people who get addicted. Or who found it’s side effects pleasurable in the absence of symptoms. They did not lie about the benefit of not being in pain.

And that ought to give you a good sense of the problem at hand. The iron law of prohibition strikes again. A massive bureaucracy imposing a fix that intervened in crude and inflexible ways is causing more suffering than it fixes. It wasn’t the intent but it is the outcome.

The iron law of prohibition is a term coined by Richard Cowan in 1986 which posits that as law enforcement becomes more intense, the potency of prohibited substances increases. Cowan put it this way: “the harder the enforcement, the harder the drugs.”

Because doctors were lied to about the risk profile of certain types of opioids in the first place, the backlash is now as bad as the original sin the pharmaceutical companies committed.

Regular law abiding people are getting fucked in their treatment plans because hard enforcement is making it harder to get the low dose drugs. We treat Tramadol users with arthritis with the same tools as as criminals addicted to illegal fentanyl. I know shocker that the American federal government can be as evil as Purdue.

But also historically you know it’s true. And now a huge portion of normal people like me, who just want the benefits of not being in constant pain, are being turned into an over surveilled over controlled population. And I’m not saying there are no risks. But who do you want deciding that? A doctor who knows you well? Or the government? Yeah I’d pick the doctor too.