Tag: Disability

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Chronic Disease Medical

Day 1089 and Silencing Inputs

I am doing very poorly today. All inputs into my system are being read by my senses as pain.

I’ve spent the last two or three hours in a dark room without any systems inputs but background. I’d hoped to become unconscious but was unable to sleep. It was an extended period of consciousness doing battle with pain. I didn’t set a timer or I’d be able to tell you for sure how much time I spent in this state.

I couldn’t read text on paper or watch visuals on a screen, I couldn’t listen to audio or intake spoken word without difficulty and intense focusing, nor could I tolerate novel or new smells. You’d think this would be very boring except that the intensity of the nerve outputs clouded all thought.

My body seems to be reading all changes in systems inputs as painful. I am unsure where the proximate source of my pain might be as it’s both too intense to get outside of and too diffuse to respond to mindfulness.

Typical locations like my thoracic spine hurt but I feel it in every joint as I take inventory. My intercostal muscles across my rib cage and chest are so tight I’d swear I have several broken ribs if I didn’t know better.

I’ve taken several pain medications of varying strengths (anti inflammatory and analgesic) to little effect. I had to stop watching Christmas movies with my husband sometime in the afternoon as I simply couldn’t handle the noise and sound coming from the tablet.

I don’t know how coherent my writing is at the moment and I feared I wouldn’t be able to muster any focus. I am finding it hard to look at my mobile phone screen even at the minimum brightness setting. This usually indicates a migraine but that seems like a secondary issue.

I hope this passes as I do not have time to manage this kind of symptomatic intensity. Perhaps my body knows this and is simply allowing a breakdown on a day where it’s safest to do so. In which case I may need another holiday or two to actually find a break restorative instead of as emergency maintenance.

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Biohacking Medical

Day 1084 and Tension

For the last week or two I’ve been getting tensions headaches. While I have migraines that manifest mostly around hormonal cycles, I can’t say I’ve had a tension headache before.

Migraines make me sensitive to light, sound, and smells but this new headache type was more like a pressure inside my cranium. Typical migraine medicine like Imitrax didn’t do much but neither did Advil or Tylenol. I tried caffeine to minimal effect. Exercise seemed to exacerbate the issue, especially if I was getting my heart rate up.

After discussing it with my physician I’ve got a suspicion that I’ve done something compensatory that has caused tension in my upper spine.

I have ankylosing spondylitis in my thoracic spine so it’s a decent hypothesis that to protect myself from the chronic pain there I’ve added additional pressure further up my spine. A inflammatory issue causing a complete different mechanical issue is a logical differential diagnosis.

I’ve got a couple of approaches to fixing the problem. I can get some body work done to relieve some of the pressure in my neck and shoulders with a massage, physical therapy or craniosacral therapy. I can take more magnesium as it is nature’s muscle relaxer. I also can take muscle relaxers.

I think this development is coming now as I’ve been really upping my intensity professionally this fall. I’ve traveled a lot, attended a number of conferences and meetups, and generally applied acceleration to everything in my world. It’s a good thing that Christmas is almost upon us as it seems like it could use some time away from the world. I will be turning within.

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Travel

Day 1064 and Faster San Francisco

I am energized by my day. Any residual pain from the challenges of travel have been mitigated by rest, exercise, meditation and lots of medication.

If I could to give only one argument in favor of acceleration, it would be our capacity to improve medicine. I’d like to find a cure to my ankylosis personally, but it’s bigger than all that. I believe we should do everything we can to improve the health and well being of humanity.

I do so much to balance my own health and wellbeing just so I can keep working and contributing to the startups I love so much. Often I miss so much of life that others take for granted like socializing together. Hobbies, socializing and much of the tapestry of living together is off limits to me as energy budget is too high.

I’d like more capacity in life so I can chose not only to work, but to go to meetups, dinners and whatever else folks get up to in their leisure and community hours.

I am not one for FOMO while I’m in bed recovering, but on the occasional day where I get to do leisure activities I am reminded that I could have more of life if we agreed to prioritize the acceleration of medicine. My energy budget is only limited by the state of our healthcare.

On that note I’ll be at an e/acc meetup tonight in San Francisco. If you think you see me do please come up and say hello. I’d love to meet you. I’ll be wearing the leopard dress I have come to think of as the “spot me in the wild” outfit as well as three distinct wearables.

Categories
Chronic Disease

Day 1063 and Overclocked

Since acceleration is within my meme space so heavily I am pushing myself to go faster. Predictably that introduces some instability in my Julie equilibrium. That’s a fancy way of saying I currently feel like shit.

I’ve been a bit immobile for the last couple hours from hitting some type pain wall from overclocking myself. I’d hope it would pass so I could focus and write but it’s getting late on the West Coast and it doesn’t seem likely.

It’s possible this isn’t entirely the fault of excess strain from travel and it is in some manner hormonal. I wonder if at some point an artificial intelligence will be able to deduce my follicular and luteal phases by sentiment analysis on my blog.

Feels like a compelling argument for restricting government power over your bodies doesn’t it? Imagine the unceasing eye of Sauron collecting context clues about your reproductive system and the right to bodily autonomy goes poof.

Anyways I’m out for the night to go do battle with the pain so I can accelerate more tomorrow.

Categories
Community Culture

Day 1059 and Socializing

The hardest part of any holiday for me is the socializing. I enjoy spending time with our friends, neighbors and family. It’s just such a high cost activity.

The twinge of jealousy that I feel towards the extroverted and able body is real. I don’t necessarily want to change who I am. I’ve come to terms with my body’s limits and my own preferences. But I sure wish I could turn myself into a high energy extrovert without any health issues when I need it.

I feel drained from the short round of social interactions I had over the past few days even though I enjoyed every minute of it. I just see it in my biometrics.

My heart rate variability dipped into the teens. I got blinking reds on on stress, energy and health on my Welltory monitor. Whoop is recording high strain scores despite me doing little but sitting and talking. I have been sleeping 9 to 10 hours a night for over a week.

I suppose acceleration is tiring. But oh how I long to not have the normal pleasures of life be so damaging. Because I am going to chose my passions over socializing. It’s much easier to justify my work and spending my energy on my portfolio of startups. Advocating for causes close to my heart. If I have a limited budget I rarely chose to spend on the pleasures of company or socializing.

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Biohacking Chronic Disease

Day 1041 and Short Notice

I’m extremely frustrated right now. I didn’t get much sleep last night. I won’t get into the details, but it’s mostly because I was overstimulated by a very long workday after what was a very productive week.

I didn’t think it would matter if I was a little fucked up today from overexertion yesterday as I didn’t have any major obligations.

Except I got invited to mid-morning to something tonight. I wasn’t obligated to go but really wanted to do so as the guest of honor may end up having a significant impact on my life. And I’ve had an interest in it which I’d expressed months ago.

Now I had strong interest in attending as it won’t be a repeatable opportunity. So I wanted to push myself to go. I did my best through the afternoon to rest and prepare myself. But ultimately my body just couldn’t do it.

I cascaded into a migraine from the smell of my husband’s cologne. All my efforts to try to be restorative with the few hours of my afternoon were gone through a single small instance of environmental stressor. An obvious sign that I shouldn’t be going anywhere if something small could set off symptoms.

Now I’d like to say that I could have made it if I’d slept more. Maybe if I’d not worked so many hours yesterday. But I feel good about the things I prioritized yesterday.

But I am so fucking angry that I couldn’t have been given a little bit more notice as I would have found a way to make it. Literally even one day would have been enough so I could prioritize sleep.

It’s obviously no one’s fault. I’m simply furious that in an effort to budget my energy and physical capacity for what was my priority yesterday, I couldn’t find any remaining capacity today.

I guess the lesson is that if you want me to show up please let me know at least twenty four hours in advance. Or even just the night before.

Categories
Biohacking Travel

Day 1034 and Green Light

When I travel I do my best to maintain a steady routine for my health. I find it much easier to manage stressors to my physical body, and my autonomic nervous system, if I get adequate sleep, nutrition, and restorative activities.

I’m the sort of person who travels with an organizer of supplements & vitamins, multiple biomarker trackers (my Apple Watch & Whoop) and helpful devices (Apollo Neuro Band, percussion massager, noise canceling headphones) to keep myself “in the green” no matter how much stress I throw at myself.

My Whoop strain tracking as I traversed 4 countries in 4 days. I traveled between Finland, Estonia, Denmark and the Netherlands.

And I put myself under some fairly significant strain over the last week as I traveled by boat and airplane through four countries in four days. As you can see from my Whoop data traveling induces more strain than rest days or work days.

I spent all day at a conference yesterday which involved a fair amount of time on my feet and socializing. But it doesn’t compare to the strain of taking a ferry to Helsinki and walking for five miles sightseeing in the cold.

I was careful today to rest after the conference so I’d be able to make use of the remainder of my time in Amsterdam. And my biomarkers seem to agree. My Welltory saw my heart rate variability fully in the green this afternoon.

Balanced stress, energy & health on Welltory say all systems are go for me.
Categories
Chronic Disease Emotional Work

Day 1020 and Subdue

I felt like I was on fire. Itchy skin, weeping eyes, coughing and wheezing, a sympathetic nervous system run amok. I was on my second histamine reaction in less than two weeks.

I have had two days of intense emotional work. One tragic aspect of a daily chronicle that’s public is dancing around some of the more private aspects of one’s life while still managing to write. I’ve been doing “a look ahead” exercise for the next decade with my family. Our goals and our challenges and our structures were all on the table. What do we want and how will we pursue it and what stands in our way?

So I found myself needed to sooth the systems. Reactivity is a choice. I wanted to feel my emotions but I’m less convinced I need to feel my hives.

So I downed 50mg of Benadryl, a couple other generic anti-histamines, a white girl downer, and I plugged myself into noise canceling headphones and a face mask. I did a few rounds of Non Sleep Deep Relaxation nervous system exercises. And slowly I was able to subdue reactions. I slipped into real sleep.

I feel better for it. But I also know I need more restorative time. Remaining subdued would be valuable.

Categories
Medical

Day 985 and Know So Little

Every time I have have cause to interact with any medical speciality I find myself blown away by just how little we know.

I’ve been going back to doctors to understand what my options are for living with an autoimmune condition and having children. And the truth is we just don’t know much.

I made a life altering decision several years ago by letting a medical decision be framed to me like a consumer product. We opted to freeze eggs and embryos and it turned our entire lives inside out. It triggered an autoimmune response in me that I’ll live with forever.

Somehow in the intervening half decade years we’ve learned precious little about women’s health and fertility. And we are advocating for somehow knowing even less.

Because that’s what we’ve done by letting the government into our health decisions. Don’t kid yourself into thinking when we involve government and bureaucrats we somehow improve our knowledge and safety. At it’s most friendly, when the government shows up it’s about ass covering. At it’s most hostile it’s about control.

We argue about ethics, safety and life as if we even have a shared ideal of any of those concepts. Whose life? My life? My unknown children? I’m not convinced we ever cared about women’s health as an independent variable. We treat fertility as a sideshow and hormones as some variable over which we pretend to have control. And yet every time I try to assess my own risks I find out that we known just about nothing. There are no good answers. And it’s all poorly understood risks.

Categories
Biohacking Medical

Day 974 and Flare

As most casual observers of this daily log have probably noticed, one of my main interests is biohacking. It was a hobby in the time of my life I mislabel as “before chronic illness.” It’s not accurate so much as recency bias. I’ve been into biohacking my whole life because I’ve had to manage an unruly body.

I had the best health of my life between 24 and 34. I am rounding the end of my 39th year as I write today. I didn’t think of myself as being chronically ill for that decade.

Probably why I think of my life as having a “before” illness is more that I’ve been in the worst flare of my life for the last five years. It came crashing down with a one two punch of being a startup founder & getting pumped full of hormones for fertility treatments at 33. I was on bedrest and chemotherapy drugs by the time I was 34.

So I have to remind myself there is no time before chronic illness. There was remission. I had long years of robust health interspersed with autoimmune diseases that flared and were contained.

Diagnosis has been a lifelong battle which started with inflammatory skin conditions and horrendous allergies and ended up with the inflammation going inside my spine and joints. Ankylosing spondylitis and psoriatic arthritis is what codes with insurance.

Looking at my health records, I had my first issues at 7 when I entered school, then after puberty as teenager around 15 & 16. I had to drop out of high school and ran a giant let of standardized tests to claw myself to university.

I was hale for college and my first startup but flared so badly after the acquisition of my first company I was put on an experimental immune reboot protocol. Ask me about being put on cyclosporin without an organ transplant.

My most recent, worst and longest flare was in the five year battle after doing IVF and egg freezing in my early thirties. I’ve only really felt like I was able to work my preferred hours this past year. So perhaps that flare is finished. I don’t want to tempt it. Though I yearn to live harder & faster and bigger.

Writing it all out in a timeline makes it seem like the pattern is introducing change and stress into my routines but also there are two big incidents involving hormones. Being put on birth control as a teenager and then whatever the opposite of birth control might be with IVF. Maybe no more synthetic hormone control for me.

Managing your health isn’t easy for anyone. It’s particularly challenging for me. And if the current post pandemic climate is any indication a lot more people are grappling with poorer health. I wish I could offer more help other than saying it’s not easy but flares can be contained. Sometimes with a lot of pharmaceutical intervention. Sometimes with better habits. Sometimes with time. And sometimes it’s just a crap shoot.