Category: Chronic Disease

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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.

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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.

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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
Chronic Disease Travel

Day 786 and Snow Birds

I woke up at 5am this morning to begin my journey from Bozeman to Puerto Vallarta. My father’s 80th birthday celebration is taking place in the appropriately warm tropical conditions so favored by retired snow birds. And it’s his party so he gets to chose his favorite location for us to gather to celebrate him.

Both my father and I live in Montana, but he tends to prefer travel more than me by a wide margin. I travel mostly for work and family obligations. I don’t find travel to be fun or an enjoyable luxury. Vacations aren’t my thing. Especially when it involves travel to somewhere hot. I would have been happy to celebrate in the -20 in Glacier personally.

Most of dislike of travel comes down to not caring for hot weather because of how much it hurts my body. It makes my spine swell. Humidity and heat are my enemy. I live in Montana partially for health reasons as anything above about 75 kicks in some of my inflammation issues.

Add in the additional strain on the spine of sitting in uncomfortable seats for hours and I’m currently struggling mightily not to wail uncontrollably from the pain. I desperately want to lay flat to ease some of the tension that has built up from needing to hold my body still and upright in uncomfortable airplane seats. I don’t want anyone to see that I’m barely holding back tears because the pain is so bad.

Alex got tisked by the flight attendant for trying to retrieve some of medication as we’ve got one of those useless bulkhead seats. It’s a terrible choice for even a modest disability as all the things that keep me functional in my travel bag were immediately whisked into overhead compartments. We didn’t do it fast enough and the attendant hovered asking that we hurry it up.

I haven’t done short haul flights in a while as most of my travel has been flat lay seats on international overnights. I wasn’t prepared for how much sitting up in a tight domestic airline seat would hurt. All I want to do is lay flat on a bed for 24 hours after this.

I’m on an airplane packed to the gills with Lily Pulitzer knock off wearing Boomer blondes and their salmon shirt wearing deeply tanned husbands. They all seem cheerful and excited to be headed to Mexico. Snowbirds are a colorful species. An exotic and hopefully endangered species that will eventually give way to more local and regional appreciation as the next generation of travelers pursues less Jimmy Buffet stylings.

Categories
Chronic Disease Emotional Work

Day 767 and Abandonment

I called someone today with whom I have a standing appointment. They didn’t pick up at first. I called back a few minutes later when they didn’t return my call.

They picked up on the second call back. They didn’t seem entirely healthy. I found myself scared. My inner child dove immediately into a pattern of abandonment and distance as I tried to cancel and give them a way out. I blathered on about how it’s usual time and I hoped I wasn’t invading their privacy but if they were sick I could rescheduled as it was obviously no big deal.

“Julie” they said to me firmly but kindly. “Stop telling me how I am.”

I sat back on my heels at that. I hate it when people make assumptions about how I feel. Rather than listen, people will simply make assumptions about how I am and what I can or cannot do. If you hate feeling pitied then this will probably seem quite familiar to you.

It’s not uncommon for people to work through their own issues on illness, pain or disability when talking to me. While I have an invisible disability from a chronic disease called ankylosing spondylitis I do make it known that I have this diagnosis. I even treat it as a part of my edge at work. But it’s just a fact that I’m in various degrees of pain because I have swelling in my spine. It’s arthritis basically just inconveniently located.

But despite it being a public part of my identity, most people have no idea. I don’t look sick and I mostly don’t act like it in public as it’s kept under control with modern medicine. But I’ll have bad days. Or I’ll have to ask for an accommodation like sitting down.

And that’s when I learn a lot about a person’s relationship to illness. I’ll get pitied. I’ll get babied. I’ll get pep talks. I’ll get praised. I’ll get ignored. I’ll get written off. It’s never about me but entirely about the other person. It’s a little bit like seeing someone’s tell in poker. Most people have got one.

In the past I’ve let myself be invaded by these feelings from others. And it made me sad. I felt abandoned by all these people around me who couldn’t see me for me but instead saw their own feelings mirrored back to them. I felt invisible. I got treated like a cipher for disability or illness.

But underneath that little drama, an the actual person names Julie would be left alone to watch them play out their emotional theater. But I am done feeling abandoned by it. I don’t have to let anyone else tell me how I am. And it’s entirely up to others to decide if they can manage around me. I don’t need to make it my problem. I’ve got no need to abandon myself for them.

Categories
Biohacking Chronic Disease

Day 668 and Health Multitasking

I didn’t take my own advice recently. When folks ask me how to begin biohacking I tell them to take it slow. You should change only one variable at a time.

Biohacking requires that you don’t change up your variables too often or too quickly. You need to establish trend lines. The biggest mistake you can make is being “noisy” as you will never isolate the meaningful variables. And you won’t stick to it. So it’s a double fuck up. Clean reliable data matters. Don’t change too much too fast.

Day 91 and A Beginner’s Guide to Biohacking

My biohacking has been focused on improving my core inflammatory markers for several years. Secondary metrics like pain and energy got better as my erythrocyte sedimentation rate and C-reactive protein went down.

What I did to improve those metrics was complex, time intensive and expensive but it was pretty clear what outcome I was pursuing. My broad goals were simple. The tactics merely a function of one overarching strategy to lower inflammation.

Recently I’ve been a bit sloppy about my goals as my SED rate and CRP approach normal. I got excited that I might be stable enough to pursue some new goals. I am always looking to lower my doses of pain management medications. But the real shiny object for me has been fat loss.

I’ve struggled to stay lean as several medications that improve inflammatory markers have weight gain as a side effect. I struggle with shame about my weight. So much of popular culture portrays weight gain as a function of poor impulse control. It embarrasses me on some deep core level that others might think I’m lazy. If immediately trigger’s defensiveness for me.

I can rationally know I was pursuing a responsible health by taking prednisone during acute phases of my illness, but a part of me is still so embarrassed by the side effects. What must people think of me? Even if I explain that it’s a side effect of medication I fear that it’s still perceived as been slovenly.

So I decided to go back on metabolic drug called ozempic because I just hate carrying excess fat. I thought I could add it into my routine. But I am not doing as well as I’d like with the side effects of the injection. I’ve now vomited two Sundays in a row and been unable to eat. That is destabilizing enough that it is impacting my other goals like a slow dose down of non-steroidal anti-inflammatory drugs.

Maintaining low inflammation rates with lower pharmaceutical intervention is obviously a huge goal of mine and far more crucial than dropping a few pounds of fat. Especially because my metabolic markers are all in the clear.

I just so badly want to put behind some of the visible markers of my disease. It was hubris to pursue ozempic when I know I have other metrics that are more important than my shame about having steroid fat. So next time you see someone who is overweight I encourage some empathy. You never know the whole story of someone’s health.

Categories
Chronic Disease Politics

Day 658 and Time Perception

I don’t know about you, but my sense of time has never really recovered from the pandemic. Time got distended and warped in ways that were hard to appreciate at the time. I struggle to tell if I’m making progress or if I’m standing still.

If I’m really honest with myself, I started losing the thread on time when Trump got elected. I was one of those people for whom that fractured my reality a little. Not because I couldn’t conceive of him winning but because I could. That was my first moment where I felt like I was beginning to split from shared reality as I was so sure he would win and so desperately wanted him to lose.

Somewhere midway through Trump’s term, my health got fucked up. My sense of reality fracturing combined with my first taste of time being distended was when my health went sideways. As I stopped working somewhere in 2018 but it’s hazy. As I spent more and more time in hospitals, doctors offices and in bed, and less time at the office, the usual ways I used to tell time degraded further. Reality had already shattered so no reason not to let time shard too.

So I can’t entirely blame my sense of displacement from time on the pandemic. My sense of instability absolutely predates it by several years. By now much I couldn’t exactly tell you. Between my health and Trump I ended up a step or two off of consensus reality.

This did end up being lucky. As the pandemic was inbound I was prepared before it hit. I had tied myself so effectively into the immune system of the information environment I knew it was coming in December.

But I wasn’t entirely prepared for how much I’d up end my life as the second order effects of the pandemic kicked in. We did the first few months in an apartment, the first summer in a vacation house on the Hudson River and then decamped for my home state of Colorado.

It’s only just as we’ve decided to commit to Montana that my sense of unreality is easing a bit. We’ve got a home that we own and a set of preparations that makes it stable through some gnarly potential futures. So why isn’t the time dilation is easing? Why does it always feel like there is never enough time and also far too much time all at once? If anyone has the answer I am listening.

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.

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
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.