Tag: Illness

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Aesthetics Chronic Disease Chronicle

Day 122 and Soul Delay

There is a line in William Gibson’s Pattern Recognition that has stuck with me for years. The context isn’t all that crucial except to know the hero has just taken a long flight.

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.

Sadly I am not jet lagged, as that would imply international travel which is a context I doubt I’ll have for at least a few more months. But I’m finding soul delay can happen even without jet lag. The separation between one’s body and one’s soul is a rich emotional issue. For the past week or two I feel like I’ve been reeling from a gap between my soul and my body. It came on suddenly, despite all the disparate causes been easy to see coming and not remotely surprising.

The dawning realization that I may not be stuck forever with a chronic illness hasn’t been the unmitigated joy I anticipated. In fact, it’s been fairly miserable realizing that the convenient excuse to keep me from workaholism won’t be an available crutch forever. I’m assessing all the things I take for granted in my life and their myriad benefits and it’s not pretty. It turns out even the most joyful possible goal attainments come with a host of introspection.

And that generally means you can’t lie to yourself. It actually feels a little bit like attaining wealth overnight. All those excuses you used to have about how you’d just pursue the life of your dreams if not for financial limitations? Some of them turn out to be lies you’ve been telling yourself for years. And then how do you feel? It turns out much of your circumstances were self imposed.

Which isn’t to say that I’m finding out I need to make drastic life changes and that I’ve been living a lie. That would actually be easy! It’s more that the sum of dozens of self limiting beliefs need to be assessed, turned over for utility, and discarded or repurposed. Why was I a founder? Why am I married? Why do I pursue attention? All of these are little bits of honesty that are giving me soul delay. Because finding out what I actually want, without the benefit of a circumstance preventing me from achieving my desires, is going to require reconciliation between my soul and my reality.

So right now I feel a kind of emotional jet lag. After intensive work and a significant amount of willpower I am getting what I wanted. I’m getting my health back. But I’m still reeling in my soul from the journey. The cortisol spiked adrenaline of the effort is wearing off. I need to recover from my recovery. My soul needs to reel itself in. But I don’t know when it’s arriving at baggage claim. And I’m so very tired from the effort. So even if I have arrived it doesn’t feel like I thought it would. I hope I can be patient with myself while I wait. It’s been two years so I figure what is another few months?

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Chronic Disease Internet Culture

Day 121 and Health Data

One of the biggest blockers to taking up a more quantified approach to personal health is your ability to get good data. Why? It’s not because it’s hard to capture or track key metrics. Nope, one of the biggest blockers is the consistent portability of your personal health data. This frustrates me as biohacking has been key to regaining my health but it’s a challenge to keep my data sets in order.

No one uses one piece of hardware or software forever. Preferences evolve. Doctors want new metrics. A new device comes on the market. You decide one metric isn’t worth tracking anyone. Or maybe your Fitbit just shits the bed and you decide to buy a new type of step tracker. Whatever the reason our stack changes over time. And yet data interoperability seems like a pipe dream. Devices and applications act is if you will be with them forever. Your data gets parsed in their specific presentations with little indication that it can be exported for later use in another table or application.

If you are considering doing work in health data please take into consideration that even if you build the next billion dollars company with a decade of your leadership, it’s possible your customers will won’t make it for the whole ride. Please don’t tie them into your best case scenario. There are real people on the other end of your metrics and they are making important real world decisions with the health data that is making you money. Respect that we want you to make money for providing us with value but there may be a legitimate reason we need to make a change. We should have the ability to take our data and have it be usable somewhere else. So please don’t optimize for “sticky” user behavior that keeps us coming back. Give us value without having to sacrifice our freedom. If you can’t do that then maybe you shouldn’t be in the health business.

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Biohacking Chronic Disease Chronicle

Day 120 and Naps

I’ve always been prone to energy dips in the afternoon. I wake up immediately ready for the day but after lunch and another of work or activity and I’m heading off an energy cliff. If I allow myself a burst of sleep I’ll be back and feeling as energetic as I was in the morning right as my body insists on an energy dip as it is dinner time. Two hours later and it’s basically bedtime just as my second energy burst is coming on. Not great timing if I’m honest.

I used to force myself through afternoon lulls with caffeine or attempting to slot in a workout to push for energy. Neither really worked well for my rhythm or energy. Once I went on medical sabbatical I was able to test out the afternoon nap. The Mayo Clinic agrees it has proven benefits for cortisol levels and stress. WebMD has a long roundup of benefits like lowered blood pressure. The only thing you have to look out for is if you are an insomniac then late afternoon naps might push your bedtime back.

This is a concern for me as I regularly get too worked up to fall asleep easily. I practice all the sleep hygiene best-of hits like blue light blocking, dark cool rooms aand magnesium and still I find myself longing to find my phone and doomscroll Twitter. My biohacking efforts on the most restful night of sleep are easily derailed by the need to dunk tweet or reply guy.

I long to find the ideal balance of nighttime rest and day time napping to make my ideal circadian rhythm shine. I wonder if I should be one of those types that breaks their sleep pattern into two blocks. Biophasic or segmented sleep always seemed like a cool hack for maximizing energy. I just don’t know if it would accidentally break me.

As much as I want to go on some sort of sleep optimizing spree my gut tells me I just need the sleep that I need. I probably need the eight hours at night along with an hour during the day. It’s just fine that I sleep more. It’s literally the best thing anyone can do for their health.

The tricky workaholic part of my brain fantasizes about having an even block of productive work that shifts my bedtime so I have a six hour evening block to match my six hour morning block. I get indignant that after my nap in the afternoon instead of rising into a second workday my energy is consumed with practicality like dinner and sleep hygiene routines. I should not push my body for my workaholic fantasies but the bio hacker in me really wants to try.

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Chronic Disease Chronicle

Day 117 and Drained

I feel like my mind hasn’t caught up to my body this week. Usually it’s my body that isn’t caught up to my mind. But I’ve been fighting so hard to get physically healthy that I don’t think I fully considered what it would mean to achieve it.

I’m exhausted as the reality of a change is hitting me all at once. I’ve been having a roller coaster of emotions trying to figure out how I feel. Some of it is a resistance to change. But I think some of it is simply that even positive changes require emotional adjustments. Adjusting to a new self requires a lot of energy.

A part of me feels like I’m fighting some boss that if I can just defeat will let me get to the next level in the game of my life. And I’ve used up all lives trying to get through it. I’m pretty sure I’ve figured out how to make it happen but I’ve been at it for so long I can barely see straight. But who wants to take a break when you are so close to leveling up?

I really don’t have it in me to say much more today. But I’m pretty sure I’ll have more once I can just get through it.

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Aesthetics Chronicle

Day 116 and Taking Up Space

I take up a lot of space. I spend time on social media because there is so much space you can literally be the President or a celebrity billionaire industrialist and there are still corners of the web you don’t penetrate. There is a lot of room for loudmouths, so much so that even someone like me still has plenty of room. I barely rate on the Elon Musk attention scale. Even when I’m screaming at best I crack into D-list zeitgeist. It’s like the privacy that comes with living in New York City. You can have some notoriety but the web doesn’t care. I like how you can feel alone.

The irony of course is that I think no one is paying attention to me. I think I’m an average Joe nobody that no one ever notices. This despite the fact that I am paid to be an expert in getting attention. No literally I cost a fortune (I’m worth every penny) but I’m somehow convinced I’m invisible personally. I can feel lost in a lonely world where I’m not even sure the people that love me the most can see me. I’m stuck in some lonely portion of my childhood where I felt abandoned so I’m replaying it out now as an adult. It’s not great but I get something from it.

Except this is a fantasy that is not true. I’m not that child anymore and I know how to get attention. I’m not alone. Even when I’m not consciously drawing energy to myself, people do see me. I can simply be myself and be seen. I command attention. It’s who I am.

You always think as a kid you will get some cool superpower like laser eyes or flying but nope you are going to get a super power like public relations or brand marketing. And honestly, when I’m not a self pitying victim I know those to be awesome super powers. You can make money and direct business and politics with those super powers. I just though I’d get something a little more aesthetic you know? It’s dope but also like adult superpowers are a letdown for your inner child.

I just need to remind adult me that I am seen. That even my normal personality not exerting her will force onto the universe is actually still quite visible. I can just exist and I’ll be holding space for myself. And it’s a good space with plenty of room for all of me. And still intimate enough to feel the love around me.

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Chronic Disease Chronicle

Day 115 and Physical Rehabilitation

As part of my commitment to quantified self and biohacking I have a physical rehabilitation protocol I cobbled together. Two years ago at the start of my autoimmune my journey I couldn’t walk easily. The ankylosing spondylitis manifested in my upper spine meaning I would struggle to get from my bed to the bathroom. I had to shower using a stool. I walked with a cane. This was not great for my cardiovascular health or my muscle tone. I was in this state for well over a year.

As the inflammation has become controlled in the past six months, I’ve been faced with a long rehabilitation. How do you build back stamina when even minor exertion was beyond one’s capabilities? As it turns out you do it one step at a time.

I’ve kept it simple. I get up out of bed every hour and take 250 steps. You’d be surprised how much a commitment to small consistent movements builds on itself. Once I got used to regular “get up” movements and pacing the room, I focused on adding small increments. Add in a hundred more steps at a time and now I’m comfortable hiking for an hour a day on flat or slight inclines. Thanks to a totally inconsistent stretching routines (a mix of Pilates and Alexander Technique) my muscles have retained mobility so that adding in more mileage has always felt comfortable.

I don’t have a program that is specific to rehabilitation though I suspect I should. I just committed to adding 5% a week more steps till I was able to walk 3 miles at a time or about 7,000 a day steps with a small amount of activity every hour. I suspect the regular activity each hour helps more than the steady state work but both add up to fitness gains. I have been adding in weight lifting and found that my strength is reasonably good. The real issue is that if I go to my full strength capacity I find myself struggling afterwards as healing and natural inflammatory processes are still a challenge for me. It’s as if the actual fitness isn’t the issue but rather my capacity for recovery.

Today I was able to successfully hike the NCAR trailhead in South Boulder. It’s a moderate intensity hike with some scramble and a gain of about 750 feet over a 3 mile circuit. What surprised me the most was that I didn’t have any perceptual issues with fitness. The exertion felt fine. The challenge was the occasional spike of pain. I wasn’t entirely sure if discomfort was a function of not being capable of managing the trail or simply that I’m still prone to system cascades. I can’t explain it any better than that. The trail was muddy and I lost my footing sending me into a fight or flight cycle that I needed to let pass.

Now that I’ve reached a point where normal activity is possible I need to find the next step in my cumulative rehabilitation program. The area where I can add 5% gains each week. If anyone has suggestions I’m open to it!

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Chronic Disease Chronicle Startups

Day 114 and Resistance to Change

Crash landing my life into a medical sabbatical really fucked up my headspace. Around two years ago I was beginning to realize I didn’t have a choice in accepting that I was sick. My identity as an always on, gets things done, reliable, entrepreneur got replaced by an entirely new self conception as “ill person” in a matter of six months. In August of 2019 I disclosed that I was officially sick. I sold my company and was going on leave.

It wasn’t a pretty adjustment. And I’m probably lying to myself when I say it took months to accept. I hated the new me. I felt weak and out of control. Willpower and muscling through did very little to help an autoimmune disease. If anything that mentality of “working on the problem” made it worse as I needed to rest and let my doctors do the work. I was resistant to change.

I think I’m going through a similar transition now as I did in 2019. I began seeing a new doctor in Colorado in October of 2020 and I made more progress in six months than I did in the previous two years. I’m beginning to face a new identity change as it becomes clear that I won’t be “sick” forever. While autoimmune diseases aren’t like an infection, there is no “cured,” it is beginning to look like I will be healthy enough to live normally. You won’t be able to tell I’ve got anything wrong with me soon.

And I have to admit to myself it’s a mindfuck. The emotional and psychological work I had to do to accept losing my entire identity is happening all over again. Who the hell am I if I’m not sick?

You see for the past two years I got used to explaining to people I was a sick person. I was disabled. I needed accommodations. I couldn’t work in ways I felt I would be reliable. I came accept my identity as someone with physical limits. And I slowly figured out ways to communicate that new reality others who has previously seen me as this abled person.

I guess you could say I was at peace with my situation. The pandemic helped. I know it probably sucked for you but I really enjoyed having a year of my recovery coincide with others having to live the way I did. I know it’s selfish but it helped! I felt less alone.

And yet just as I’m finally feeling like I really got a handle on my new identity it’s not my reality anymore. I’m not going to be a sick person. And while I thought I’d be overjoyed it turns out it’s a little more complex emotionally.

Let’s try a comparison. Imagine you broke your arm. You keep it in a brace and you can’t use it while it’s healing. And then the cast comes off and you are unsure if you can go back to using your arm like you did. You used to move your arm without thinking. You don’t worry about applying pressuring or picking things up before the break. But after it’s scary. You don’t want to set yourself back. You are scared to lift things and scared to apply pressure. I am in that place with myself. I know that the break is healing. The cast is off. But the muscles are atrophied and I’m not sure I trust that everything is knit back together. But the reality is that soon I’ll have the all clear.

But who I am now? I’m not the entrepreneur I once was. That workaholic Julie won’t be coming back. But the disabled sick Julie won’t be with me forever either. And I’m a little scared about it what’s coming. Who am I going to be next?

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Chronic Disease

Day 110 and Weed

As it is 4/20 I thought I’d share how introduced THC into my medical regimen. I suffer from an autoimmune condition that manifests as inflammation in my upper spine making me an excellent candidate for medical marijuana. As a libertarian I’m pro-legalization but I likely wouldn’t have chosen to use THC recreationally except that it happens to be a drug that has demonstrated benefits for my condition and is comparatively less dangerous than other pharmaceuticals I am also proscribed (namely opioids and high dose NSAIDS).

For some context, despite being a native Coloradan I had never smoked weed till this year. As a kid it just didn’t seem appealing (that’s what hippie boomers do), and to be candid as I got older I didn’t love the idea of tying a health need to something that wasn’t legal. I lived in New York for the past 15 years and while I could have had medical marijuana prescription I was frankly too intimidated to try. Without legalization I never would have attempted it.

Since moving home to Boulder during the pandemic I’ve been experimenting with different THC strains as well as combinations of THC and CBD. I’ve purchased a PAX (an expensive vape), worked through different flowers, butters, shatters, edibles and tinctures. It’s been enormously expensive (probably getting to be over $1,000) and demoralizing as quality, impact and consistency is variable. This despite living in a state where it is completely legal and has the foundation of a consumer culture where you can walk into any dispensary to receive quality advice and purchase wherever you like. Weed has a long way to go before it’s reliable in the way that other pharmaceuticals can be.

I’ve found that CBD on its own doesn’t impact me in any positive manner. But CBD when combined with THC seems to have a reasonable analgesic effect. And I do notice I feel better the next day. For me it’s roughly comparable to taking a double dose of aspirin. Different strains don’t impact me much though I experimented with indica and sativa strains own their own as well as mixes. Indica supposedly has more of a body high versus the mental high of a sativa. The only aspect I really noticed was it’s a challenge to notice a body high when vaping. This makes me have a slight preference for mixed as without a mental high it’s hard to judge impact and dosing.

Interestingly I don’t seem to get much of an impact from smoking or vaping period. Which is weird but I’ve got a weird body. I’ll need to Vape for an hour straight to get any noticeable impact. That’s made me much prefer edibles as it’s less time consuming and more controllable. I’ve been leaning towards a hybrid tincture or gummy that is a 50-50 mix of THC and CBD. THC on its own doesn’t seem to cut down the inflammation pain in the way a mix does. It really seems that the more you break out individual terrapins the less effective it is at driving a result.

My absolute least favorite part of using THC is the high. If I could see a reduction in inflammation and pain without THC and only using CBD I would be thrilled. But CBD just doesn’t on its own for me. So I tolerate the high that comes from THC on bad days. I can’t take it during a work day as it does slow me down mentally. I can workout while on THC and it has really improved my capacity to weightlift as exercise improves inflammation so it is a virtuous cycle. That is if I don’t accidentally push myself too hard. That’s a real danger when you feel better than you actually are. Pain killers of any kind are both relief but it’s helpful to remember tier the pain isn’t gone it’s just subdued.

All of this should be caveated with I don’t take very much (generally 2.5mg but sometimes up to 5mg) it’s not a daily drug. I use it as needed when I’m in worse pain than my regular prescriptions don’t cut it. This is all personal and I don’t recommend anyway try out any drug without checking with your doctors. But honestly I’d rather use THC than Tylenol. So happy 4/20!

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Chronic Disease Chronicle

Day 106 and Perceptual Drift

I often find it easier to talk about the darker parts of my journey from chronic disease once I’m already through the worst of it. If you are hearing about my long dark night of the soul it’s probably because I can see dawn breaking.

Maybe it’s because it’s hard to discuss the challenges when you are in the thick of them. Having any amount of perspective when life is at its worst is a skill reserved for religious scholars and internet advice gurus. The rest of us just try for hindsight being 20-20 at best. I admire the stoic philosopher types but I’m generally just happy to be able to survive rough days with a minimum of pain and angst.

It’s likely this tension between a better current reality and the heaviness of past challenges that made me so confused by the reaction when I posted about the envy I felt towards people who live healthy normal lives. A number of people checked in on me worried or concerned about how I was doing. I didn’t get it. I had just been discussing how well I’d been doing so why was everyone offering to pray me me?

I’d come to terms with some of the sadness and anger I’d felt during the worst days of my illness because I was doing well. I’d been posting about how excited I was that I felt great, had clean bloodwork, and was seeing better days. It was because I was doing so well I decided it was best to ruminate on the challenges I’d experienced. I was on the other side of it. Feeling well and energized meant I had the capacity to explore the dark places. When I’m actually in a dark places usually all I can do is survive the experience.

But I get that others didn’t see that now. They saw darkness and sadness and reach out to me with kindness. The love and support from people close to me and the messages and prayers from my internet friends all added up to me feeling like the good times will just keep getting better. If you are reading this I encourage you to share your journey. You just might get back the same love that I got. People are great that way.

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Chronic Disease Chronicle

Day 105 and Envy

I didn’t have hobbies for a long time. People would ask me what I did in my free time and I’d give them a confused look and try to come up with a plausible activity like reading. I was embarrassed. Everyone else constantly doing shit. In reality, I didn’t have the energy for anything but work and taking care of life basics (and for a few years spare energy was dedicated to sex and dating but that’s different post).

I’ve been an on and off entrepreneur my whole working life. And if I’m totally candid I’ve had health issues that impacted my energy since I was a child. So while I have had things in my life other people would consider hobbies, they were slowly stripped from me. I stopped horseback riding somewhere between 16-17 when I dropped out of school. I told people it was allergies (which was true) but much of it was exhaustion. I was fighting just to keep up with obligations to education like taking tests for college and to prove I had learned enough to be considered a “graduate” by my school.

In college I was blessed to go to a school that wasn’t cool to have have parties. That made it easy to hide being too tired to socialize. Other students were in clubs. I didn’t join anything. I was thrilled to make it to my job (as a research assistant to a medical ethicist) and get home to my roommate and boyfriend to watch tv at night. I didn’t realize this wasn’t normal at the time.

Once I started my first company all I did was work. I had to socialize professionally so I spent a lot of time at fashion parties. While this is fun it wasn’t a hobby. I partied because it’s how I made my living. For a while I thought this meant I had a hip social life. Which was a nice lie. I had a glamorous job.

It started dawning on me around 24 or 25 after I sold my first company and had to relocate to San Francisco for the acquisition that other people didn’t live like I did. In San Francisco people hiked, did yoga, took classes, and all the other “bullshit” I looked down on. I looked down on hobbies not because I think work is better but as a defense mechanism. I was jealous.

All these people had energy at the end of the day. They wanted to do things! That was unfathomable to me. I could barely do work. How the fuck was I supposed to do stand up paddle boarding on the bay? I was not kind to people that had hobbies. I told myself (and they could tell) I thought they weren’t as good as me. Of course, now I realize this was the trauma of illness manifesting it. I couldn’t do what they did. Rather than feel sad or angry or some other productive feeling I decided I was better. All to avoid letting myself feel how angry I was that I couldn’t have that life.

I’ve come to accept that I still live more than most people even with limitations like illness. I don’t have to prove a good life with status markers like hobbies. Though I’m still fighting to get to complete functionality and control with my autoimmune disease. But even if I do get to a place where I can live normally I might still skip the hobbies. I’ll go straight for the pleasures like work. I’ve only got so much time so I may as well enjoy each moment with what I actually like.