Tag: Disability

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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.

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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.

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Biohacking Emotional Work

Day 965 and Bounce Back

I had a really shitty day yesterday. I was attuned to the haunted corners in myself and others. I was in an astonishing amount of pain. I got into a fight with a family member over a misunderstanding.

I found myself in a state of reactivity. It’s a huge challenge to manage nervous system regulation for me when I tip from the pain scale from my typical 4-5 to the impossible ignore 7-8 range.

I have become quite used to living with pain that would be distracting for others. I monitor biometrics like my heart rate variability to keep track of how stressed my body is from the pain.

I’ve found it important to learn how to bounce back from unexpected pain. It’s important to stop stress and reactivity in its tracks. If you let stress hijack your nervous system you can do yourself a lot of damage.

I took care of myself last night. I did what I needed to get my nervous system under control and the pain manageable. And it worked.

I turned myself around today. I lifted weights, I meditated, I took my supplements, and I tackled my work load with pleasure. I can feel the fatigue sweeping back in as the day winds up. But I can rest easy knowing I set myself up to bounce back again tomorrow. Budget for the body you have and not the fantasy one which you don’t have.

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Emotional Work

Day 959 and Averages

I did not react to a drug in an average way. I’m really pissed about it. I went in so confident based on what the studies has shown. We’ve got this fantasy of science and specifically medicine that has very little appreciation for what it does to outliers.

We discuss what’s most likely. What’s average. What’s typical. We explain the difference between mean, median and average. We have rigor. We have regressions. We can come to an understanding of what the models agree is conforming to our understanding. You should probably see these results.

And then we gloss over the bad data. The outliers. The grits of sand. The flecks of reality that make your model jitter. The shit that just makes things more complicated. So maybe you toss it out.

And it mostly doesn’t matter. Because your body probably is pretty average. And that’s a great thing. We tell stories about what it means to be unique even as you are no different than anyone else. Pixar movies are about our ineffable spark of humanity soul even as it reflects on how we are all really just the same. Shared human experiences are universal. Probably because our bodies are pretty similar.

I sincerely believed I was average for most of my life. I was raised with that as a value. And now as an adult I see how I’m average in so many ways. But my body will never fully reflect a shared reality. You get to know what works for you even if you know what boundaries are a little different for you.

You’ve got to know the contours in which you are exactly as your reality would indicate. That’s your ego speaking generally. But the ways in which you are not matter too. That’s where you tailor treatment.

Categories
Biohacking Chronic Disease

Day 953 and Sugar

If you’ve been following me for a while chances are good that you’ve seen me discuss my biohacking.

I’ve got an autoimmune condition called ankylosing spondylitis. It’s a form of arthritis in the spine. When it flares the inflammation can be so painful that basic tasks like walking or standing can be out of the question. It’s impacted my daily life in strange and sometimes sadly poignant ways.

Now thanks to the wonders of modern biologic injectables like interleukin inhibitors (my lucky number is IL-17h), non steroidal anti-inflammatories, the occasional round of chemotherapy workhorse methotrexate, and the ultimate big boss inflammation killer known as prednisone I lead a pretty normal life.

I am however always looking for new ways to improve my situation. You name a modality of healing and I’ve surely done it.

I’m regularly throwing myself at new pharmaceuticals, new workouts, new devices, and new routines. I track it all obsessively. If you want a 10 day water fast buddy call me.

This kind of thinking means I am prone to optimism and the occasional “one weird cure” line of thinking. The hope that springs eternal is the fantasy what ails can fixed with a gluten free diet (nope) or the du nude Goop wellmania cure which costs $500.

One of my biggest “I’ll be cured” fantasies is that the extra body fat I gained from multiple rounds of steroids and hormone treatments is actually the cause of my health problems and not one of its symptoms.

Notice they I don’t say biggest fears. My biometrics don’t really suggest that adipose tissue is my root issue. Being fat is a core problem for many people but for me it’s a symptom. I don’t want to disclose said biometrics as I fear insurance companies and pharmacies might decide to dig.

In pursuit of a cure for this symptom, I’ve been way ahead of the GLP-1 agonists like semaglutide. My Novo Nordisk and Eli Lily stockholdings are up 100%. I had success on Ozempic but went off it as the side effects got to be too much for me after nine months when I reached a healthy body weight.

But I recently I paid out of pocket to try Mounjaro as I’ve not happy with where I am currently at for excess adipose tissue. It’s supposed to be less brutal on the stomach. It’s got a duel mechanism as a GLP-1 and GIP receptor have lead to excellent clinical trial results.

I’d say about three weeks in those results for me are not forthcoming. I’ve been in a perpetual state of low grade anxiety that seems to be from hypoglycemia. I’ve been sluggish, cranky, moody and my mind unfocused and hazy.

As it turns out the glucose-dependent insulinotropic polypeptide receptor (GIP receptor) primarily affects the body’s physiological response to food intake and blood sugar regulation. So I’ve got low blood sugar.

Luckily throwing fruit at the problem helps the symptoms. I have not lost so much as an ounce though. I think I’d rather go back to Ozempic which at least took weight off. I’d rather have a fucked up stomach than a fucked up mind. Maybe other people need to eat less sugar. I guess I don’t have that problem.

Categories
Biohacking Politics

Day 946 and Compounding Our Incentives

I don’t want to brag (that’s a lie for rhetorical flourish I am bragging), but I woke up with excellent biometrics today. My first instinct was that I should rush into a long “to do” list for the various priorities I have remaining in the month.

And I do have some priorities I’m very excited about this month. If you are in Montana I’m hosting a get together to celebrate the “Montana Miracle” of the housing reform we successfully passed. Would love to have anyone near enough to Gallatin to pop by and meet me, my husband and our friends in person.

If you aren’t based here, you might be interested in our successful campaign cut out California style regulations so we can build more housing.

We think we can be a model for other western states looking to reclaim rights for their citizens from the government. I believe in individuals pursuing their own freedom as a long term incentive for growth.

The focus on long term incentives is key to understanding both my stance on individual freedoms and how I spend my own time.

Because I’ve got to turn this blog post around to why I was tempted to run into my immediate to do list but held myself to my routine.

I was reminded that my biometrics are good because I’ve been focused on core activities and processes that make my own “system” of incentives tick for my physiology.

I have to sleep, eat, exercise and otherwise take care of my body. If I simply responded to every dopamine hit and desire I had I’d be sick as a dog. I can promise you this is true as I live with a chronic condition I manage with good habits and some better living through chemistry.

I’d prefer we manage as many problems through good compounding longer term incentives. From building for a future that’s arriving to quickly to keeping our bodies from imploding. So get enough fiber, lift heavy things and build more housing.

Categories
Chronicle

Day 933 and Hot Hot Heat

It would seem that we’ve officially entered the high season of summer that even northern latitudes like Montana cannot escaped entirely.

I wish I had the capacity to work out a circadian rhythm that entirely accounted for how miserable long hot days can be even if you are inside in the shade. Siestas and late evenings could work but I’ve got the hang of it. I need my eight hours.

I never get cabin fever in the winter. Even the worst storm usually abates within a couple days. I can happily layer up and enjoy being in the cold and dark. I can be outside if it’s cooler, darker and clearer. If it’s not I’m basically a caged animal.

But there is nothing to be down about the sun being out till 10pm and with temperatures crossing over the 90F/32C degree mark, all that is left is escape indoors to a cold dark place and wait out the season.

Last year on July 21 I wrote about summer season affective disorder so it’s clearly a pattern I notice around this time. I’m simply grateful it’s starter later than it did when I lived in Colorado where hot streaks are beginning even earlier.

With Montana summers, I go to sleep when the sun is still out and I wake up and it’s already sunrise. If the heat weren’t so intense I think it would be bearable but the heat domes are becoming pretty common. I remain grateful it’s only six to eight weeks unlike most of continent where summer is longer and crueler.

Another factor in all of this is how challenging fire season can be for spending time outside comfortably even if it’s not combined with a heatwave. I went out this morning before temperatures climbed to get some sun and exercise. The air quality was still decent but multiple fires are popping off in Montana and I expect this to change shortly. I suspect I’ll need to find a way to manage more time indoors as the summer rages on.

Categories
Chronic Disease Emotional Work

Day 931 and Open Calendar

I am about to sunset a long-standing weekly appointment that has been on my calendar for literally years. And I was surprised to discover how much getting back that time made me happy.

The block on my calendar was for something I very much loved doing and valued highly, so the sheer joy was unexpected. But as it turns out I loathe having a consistent obligation on my time.

This isn’t to say that I don’t like being responsible, reliable, or on time. But rather I like knowing if something comes up that I have some flexibility. And I don’t like to disappoint people by needing flexibility.

My suspicion is that this represents some lingering guilt I have about having a chronic disease. While I rationally know that I did nothing to deserve being sick, I do carry a self limiting belief that being sick is a weakness.

I’ve always prided myself on being a “mind over matter” person. I’ve shown up to countless events, meetings, pitches, and other obligations while in pain. I’ve been known to repeat “Michael Jordan, Game 5” as a mantra to remind myself that I can perform in even the worst physical circumstance.

Michael Jordan famously played and won with the flu. And the logic in my mind was surely I can do the same when something is on the line. So I always have. If someone expects me to show up and perform I do it even if I am struggling.

But as my season of no has begun I think it’s time I stop romanticizing my capacity to work when sick. I love having my time back on my calendar and I love the flexibility that I have to work whenever and wherever I want.

Maybe some people would chose to work less under these conditions. For me though, having more flexibility in when I show up means I’ll find even more time to put into my work. Because I love showing up for me. And sometimes it’s easier for me to show up when it’s not a damn calendar block.

Categories
Biohacking Chronic Disease

Day 919 and Thin Skin

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

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

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

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

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

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

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

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

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

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

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

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

Categories
Emotional Work Medical

Day 896 and Watching Pain

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

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

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

Ben Hunt

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

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

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

Day 183 and Pain

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

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

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

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

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

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