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Biohacking Chronic Disease Medical Preparedness

Day 1726 and Grief is for the Living

My husband and I are both sick. It’s the kind of “not quite respiratory, not quite sinus, not quite right” viral infection that always seems to take twice as long to clear as you expect.

Aging and stress is part of it but so is the damage we both have from covid-19 infections that turned into pneumonia. We’ve never been the same.

The good/bad news is that everyone we know seems to have the same basic set of physical degradations that we do. Varying levels of impact are met with varying levels of healthcare and wellness routines. From peptides to hyperbaric oxygen chamber therapy, no one is taking this shit sitting down.

I was already chronically ill before the world changed forever. It’s now common to have a flavor of autoimmune inflammatory chaos. I feel both less alone but much more frustrated at the crisis in American healthcare.

My medical billing codes as ankylosing spondylitis (arthritis in my spine) and psoriatic arthritis (psoriasis but it’s inside your body and it hurts!) but the tldr is constant pain, occasionally losing the capacity to walk, and the persistent exhaustion of chronic inflammation.

As we both cancel travel plans (for a charity event we’ve supported for years) and struggle to manage food and medication, I am reminded of the grief we are all carrying around.

As the world goes on with the “before times” as l memory for older generations, and the idea of any kind of positive “before” is unimaginable to the young, the grief comes and goes. The elders we stopped civilization to keep alive are dead or dying and our youth are distraught.

My own father passed just two weeks ago. I am grieving his loss, as well as how the loss is being handled by others. But my grief is mine and he is gone.

I am not the one who gets to choose how to memorialize him. Life goes on and we make precious few decisions about how and when it ends.

I remember being so angry and afraid for him when he left for cruise as lockdowns went into effect. I begged him to cancel the trip. I was afraid he would get sick or die.

He didn’t share those fears. He got stuck on the boat for an extra week or two, as no port would let them dock. He had the time of his life. I was locked in an apartment in Manhattan.

I don’t think he ever got Covid. For which I am grateful. I know far too many who did. I know many angry Zoomers grieving lost high school and college years.

Housing went up by 50% as we printed to survive the crisis. Strange times for us all and now we face the Great Ravine where the choices we made catch up to us.

My investment thesis of an increasingly chaotic world was novel when I first began and now it’s the same pitch every Tom, Dick and Harry espouses. What was once unclear is now the consensus. I am I am alive to see it and find no satisfaction in being right. The grief is all around us. Grief is for the living.

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Chronicle

Day 80 and Spring Equinox

Seasons seems to have fallen into the same category as “time” in that both have no meaning anymore. The pandemic has loosened our grip on linearity in our perception of time significantly. Which I view as an unabashedly positive thing. Why should we all be forced into living as if life moved in a straight line?

Nature has given the impression of being keen on rhythms like seasonal transitions but the more human life bangs on the planet the less it seems like seasons matter either. I’m less sure if that’s a net benefit like losing a linear sense of time (that was always bullshit) but losing nature’s rhythms is a bit weirder.

It’s the first official day of spring in the northern hemisphere and its snowing in Colorado right now. And we just dug ourselves out of over two feet of snow from a significant blizzard. The only indicator that seasonal change is upon us is day and night reaching equilibrium.

I’m having mixed feelings on the season of rebirth. A kind of shaken manic state has taken hold of our emotions with the possibility that the pandemic could be tamed. With vaccines rolling out quickly giddy conversations about summer reunions and family travel are cropping up. Friends are sounding optimistic about seeing each other again..All while we don’t really know if things will actually be better with a number of unknowns in the ether.

I’m not sure I want to change my lifestyle for a post pandemic world. Much as I’m praying vaccines remain effective and same. The pandemic has revealed many elements of our past lives to be unsustainable. I like being home. I like office life being considered less productive than the freedom to work from where you wish. . And I really like not having to socialize for professional reasons. I hope we keep the best elements. If I felt safe that all the accessibility was going to remain maybe I’d feel ready to celebrate spring. As it is I have some snowy winter worries on what life will look like as we step out of the cold into a new spring.

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Chronic Disease Chronicle

Day 24 and Going Easy On Ourselves

I keep a daily journal with some terse observations. I found it a manageable habit over the course of several years. So I was disappointed to look back over January 24th’s 2020 log today. It seemed as if everything in my life had slightly better metrics.

I couldn’t quite figure this out as I think in general my life is going quite well. I’m happily living in Colorado. I’m near my parents (even if needed isolation has meant seeing a lot less of them than hoped). I’ve had some excellent health breakthroughs thanks to more holistic care available in Boulder. So why did it seem like I was struggling more year over year?

And then I realized, oh of course, I just got used to the pandemic. The stress is clearly more but I’ve acculturated. Last January it hadn’t hit daily life yet. The daily stress and turmoil of an uncontrolled disease was still in its “oh shit if this hits us it will be bad phase.” A year along and I’ve become accustomed to the little indignities and struggles of pandemic living. But even as I’m happy with the changes it’s brought to my life it has sadly lowered the quality of life in meaningful ways for everyone. I don’t like dwelling on this as I need the improvements to be meaningful too. And I’m sure they are in ways I’ll appreciate once (if?) this all goes back to normal. But I know it’s going to be another six months from here.

I’m generally optimistic about my preparedness for all types of outcomes. And I am thrilled for the four year reprieve that comes with not having to constantly hear about political news. But this is all still taking its toll. So maybe it’s ok if my medication load is a little higher. I’m alive and well. Who cares if I need a bit more support. If I don’t feel like I look and move as beautifully and easily as I hoped that’s alright in the face of a generational crisis. I can take it easy on myself. If it’s all frustration and pain that’s no way to live. I don’t need to fight for progress every inch of the way. Sometimes it’s alright just to be comfortable and alive.