Tag: Illness

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Biohacking Chronic Disease Travel

Day 1800 and On Steroids

I’ve been on the move, and in wet, rainy, and polluted weather (in other words coastal cities) where I tend to do the worst.

It is frustrating to see nearly five years of work in my journals and tracking amount to very little in the face of wet moldy environments.

It’s not a terribly pleasant topic for day 1800 and makes me feel as if I’ve made little to no progress on moderating my immune system.

I’m particularly upset as it’s bad enough I chose a steroid course. I am too afraid of getting an infection. I loathe prednisone. It works so well. It is like a hammer on inflammation.

Prednisone crushes every inflammatory condition instantly. Red itching oozing welts in a matter of hours. But I can speak from hard experience that even though it stops a cytokine storm in its tracks, it leaves you crazy and fat in quite short order.

I am simply terrified of picking up a skin infection as I’ve had a doozy of a year dealing with them in areas delicate and unusual. It’s been horrifying to have issues with eyes, an incision site and abscesses in even more personal areas.

It seems safer to use the hammer before an area of open skin can be found by an invasive species just looking for somewhere wet and broken. I pray it was the correct choice.

Categories
Culture Travel

Day 1791 and Hack, Hack, Cough Cough

One of the oddest post pandemic norms we’ve come to accept are the hacking coughing fits we pretend are normal parts of public transit.

By public transit I don’t just mean just subways or busses. I’m sure they suffer from this issue as well.

But rather our most expensive version of public transportation, air travel, is riddled with passengers clearly infected with one variant or another of a respiratory illness.

Now I get it. It’s not cheap to fly. A cold coming on won’t stop you from going as you paid a lot to travel. Everyone is on the road trying to make their way to family, friends and community. It is hundreds, if not thousands, of dollars to get from here to there.

So as you stand in long boarding lines where people queue seemingly at random in groups 1 through infinity, you see various flavors of sneaks, cheats and idiots bottlenecking the mess.

And then you hear the coughing, hacking, sniffing, sneezing and other variants of ignoring the body’s strain.

I am prone to skin infections rather than respiratory ones or this trend would worry me more. I generally don’t mask unless I’m stuck in tight quarters. Sometimes I wish I had. Dealing with Chicago and the sweating, panting, running, struggling human masses, I feel I should have.

You still see depending( on the city, its demographics and its politics, a range of mask wearing. The elderly are often masked. I see frequent flyers wrapped up tight in the good N95. There is quite a lot of masking and I think it’s a good thing.

Maybe these maskers know something. They must be used to persistent cold and flu season and understand some folks who don’t care about their impact on others. Masking must work well enough to be worth the hassle for some.

I hate to bring up the old awful politics of the COVID era, but we should have learned a thing or two from Asian nations who politely mask themselves when ill to benefit their fellow citizens.

Wouldn’t that be an impressive thing to see? Americans caring about each other’s welfare. If I have a cold, it will be because I was too stupid to mask up. But if I get a cold I promise I’ll mask up to avoid passing it on.

Categories
Chronic Disease Internet Culture Reading

Day 1772 and No Signal

The volume of communication we receive digitally has risen to deafening levels. I’m shocked we aren’t all in a civilizational stupor muttering “mawp” like the cartoon secret agent Archer.

As we attempt to balance the barotrauma of the increasing volume of dings, pings, tings and Slack bings trying to reorient our attention towards them, the temptation is level the pressure explosively. Shut up!

The noise is bearing down on us relentlessly. Just when we think the pressure might equalized and we have adjusted to the din, a new chime will force a recalibration.

MAWP!

Our phones become dysbaric monsters. The ambient pressure disorder that is leveling your attention span to the cacophony of alerts and aggravated existential noise leaves us deaf, dumb and disoriented.

Different people cope with this in different ways. Many of my friends have committed email bankruptcy including me. Some people make big claims of having screen free homes. Others go to physical therapy or osteopathic craniosacral specialists for cervicalgia. Isn’t it nice to know your text neck is killing you even if the tinnitus and vertigo doesn’t get you first.

This is all to say that my Signal Mobile application inexplicably stopped working this morning and the silence is causing me some degree of anxiety. If I were a woman with fewer scruples I’d consider it disabling.

Alarmingly, because I’ve been forced to mute virtually every other channel of communication to avoid the noise, this means it’s been largely impossible to get work done.

Hopefully I find a solution soon. I rebooted my phone, cleared my cache and updated to the new iOS. Nothing works. I’m afraid that I’ll be losing the one channel that actually functions for me.

If not, you may very well not hear from me again. Twitter direct messages still work. If you are looking for me check the nearest ear, nose and throat specialist. If I can’t fix my ankylosis in my thoracic maybe I can improve my posture in the meantime. The worst case scenario will be installing WhatsApp but I’ve not given in to that nightmare scenario just yet. I’m running silent in my attention submarine but I’ll have to resurface at some point.

MAWP!

Categories
Emotional Work Politics

Day 1770 and Making Suffering Worthwhile

A long time ago, in a past life so foreign I can barely recall, I made some bad choices in the hopes that I was making good choices for the people I loved.

I froze eggs and embryos with my husband thinking that some day we’d have the money, health and stability to have children.

That day never came. And it’s unlikely to change. My health is what it is and I won’t ever be able to carry them. We’ve spent a small fortune trying to get me healthy enough just to go back to work and being healthy enough to carry just didn’t happen in time.

The high costs of surrogacy are daunting and the extra help I would require to raise them isn’t forthcoming. Being somewhat disabled means I’d need a lot of help and not the kind you can easily pay.

The extended family who does want to help and raise them (not blood family but nevertheless family) has never succeeded in getting a visa approved for so much as a vacation in America. So that route seems rather shut and has remained a small beacon of hope that seems ever less likely.

I could go abroad and raise children near them but that would be admitting defeat on a level on life in America that feels like dying.

My husband wouldn’t be able to come. We have a home and a life and careers in America. Funny how we don’t really have family in America that cares one way or another though all our existing blood relatives are American it’s the extended not quite family that seems to care most about family.

So a day after a socialist won the mayor’s race in New York City I have to ask myself how can we make the suffering of so many feel worthwhile? What did I achieve through my sacrifices? What did America achieve with our choices that can be seen as worthwhile? if those questions cannot be answered I don’t know where America goes from here.

Categories
Biohacking Chronic Disease Medical

Day 1768 and Maybe A Corner Is Being Turned or Maybe I Should Turn Back

I feel as if I lost almost all of October to combating a medical hard left turn from what was supposed to be a pretty simple procedure requiring no downtime and little healing.

I feel like I got quite a scare and yet you’d think I’d be used to it, as this is all downstream of the interleukin-17 inhibitor that I changed onto at the beginning of the year for my autoimmune condition.

Every single quarter, and in some cases every other month this year, I have had some bizarre skin infection resulting from otherwise pretty benign situations. An infected gland in my eye (twice!) an abscess that turned into a deep tissue infection, and a tiny incision that allowed in a subcutaneous infection all rocked my world.

As much as I am thrilled to see all of my inflammatory numbers rolling in to baseline normal, I just don’t know if I can sustain having a health crisis this frequently for a medication that is supposedly working. It’s working at an extremely high cost to my sanity and body.

And you might say, “Well, the numbers don’t lie.” And I’d agree. But there are many other factors I have to consider, not the least of which is that healthcare access in America is so bad that I have managed two of the four crisis points with medical tourism abroad.

I am going to give my IL-17 inhibitor a full year as dosing on and off biologics is no easy matter and the compounding effects are quite real. But I do very much wonder if in order to go forward I must turn back.

Categories
Biohacking Emotional Work

Day 1765 and Hollowed Out

I’m at home with a freaky red light mask that could absolutely pass for a horror movie prop. My husband is sealed up in a hyperbaric chamber with two atmospheres of pressure and oxygen pumped in through a mask.

It may be Halloween but neither of those activities are horror movie material even though you could easily imagine them featuring as props in a serial killer series or Final Destination.

And yet these are things we are doing for health and wellness. One man’s horror movie is another man’s idea of a good night off and you can really tell we are tired childless adults that this is our idea of winding down on a Friday night.

The childless part wasn’t entirely a choice but we picked lives of professional intensity a long time ago so Friday night spent in self care is a sign that we’ve earned some respite.

Millenial success stories involve long hours. Millennials being all hallowed out on All Hallows’ Eve shouldn’t really come as a surprise to anyone, given the current state of American politics.

I’ve never liked Halloween much as if I want to dress up I don’t need social permission and I really don’t care for parties or socializing. I got all partied out in my twenties when I had to do a ton of it for professional reasons. I know it sounds glamorous but nightlife is work.

I had a tequila client and I had a hotel with the hottest nightclub in the New York City. I somehow managed to have both Patron and Le Bain as a client in my advertising agency era, and while loved both clients it did mean eventually all I can associate with nightlife is work. When I had a night off I stayed at home and read science fiction with a face mask.

Which means some things never change. There is no suburban holiday with children to dress up and take out. And I barely have recollections of doing any of that as a child. It’s no surprise this holiday has no hold on me

I don’t know why I have no fond memories of it but I don’t. I have almost no memories of Halloween. The precious few years in which we lived in suburbs, where I had both parents and I was young enough to go trick or treating barely register. And I don’t feel sad about it

I am much sadder about the kind of world we fought to succeed in as adults. I am happy to be home and with the horror movie treatments to heal the ravages of the real world that have been enacted on both of our bodies.

The long hours over decades, the multiple Covid infections my husband suffered, my own autoimmune issues and the realities of aging are not horrors but they are real. And I acutely am aware that Halloween is pretend.

And nobody should have to pretend that they aren’t hollowed out when they are. That is a fairy tale for children and for the people who still are. Neither category include me. It’s perfectly fine to be tired on a Friday.

If I’m going to put on a mask tonight it damn well better have health benefits. Here is to red light therapy and collagen masks. May they heal what ails you on all hollows eve. You can face the dead and your demons tomorrow.

Categories
Biohacking Chronic Disease

Day 1764 and Not so Easy In and But Out of the Woods

It has been sixteen days since I confidently decided to insert testosterone pellets by tiny incision into my left buttocks. I was felt certain we’d checked all the appropriate risk factors and my tolerance threshold was met.

I felt I was making pretty decent progress on healing over five days as I had not only the benefits of HBOT but also read light therapy. I was pretty darn pleased and felt well.

And then it seemed I took a turn six days further on. Perhaps some trauma from the lidocaine and epinephrine induced enough of altered window of immunity that some bacterial weaseled its way in the wound and viola a subcutaneous infection called cellulitis.

I was put on two different antibiotics and we figured it would clear quickly. That was incorrect And it has been a slow healing process

Barely improving day by day. And I had somehow made the decision the night before the procedure that I would just waltz into a new beauty shopping blog as the holiday season warmed up. So that was perhaps bad luck on my part. And has slowed me down on something I was doing for some joy so I hope I didn’t let anyone down. I am muddling through.

Today I got an ultrasound on the wound after a fever spike and did a number of blood tests to see where my white blood cells and inflammatory markers were at.

The local hospital was having computer troubles which meant trouble scheduling an ultrasound but we managed to find another imagining clinic this morning.

Back at the hospital for bloods (they do walk ins for blood draws) they still appeared to be having issues with computers. “Your insurance isn’t recognized” was the verdict thirty minutes after using it at other lab. That made for a chuckle but we got it done.

The results are already in and we seem to be looking at healthy epithelial tissues and my CRP and Sed Rates were not elevated. Of course, half the reason I am worried is I take an immune suppressant for chronic autoimmune inflammatory condition.

It seems to manifest frequently as skin infections. My old drug wasn’t nearly as effective but it also didn’t have side effects. S

Hopefully slowly and with lots of protein and rest I’ll be healed and can spend my time on work and my pet beauty blog.

And tomorrow I’ll cross my 30th HBOT treatment mark so maybe it can make progress on building me up instead of dealing with a flesh wound. Which is actually just damned good luck on our part.

Categories
Biohacking Chronic Disease

Day 1761 and Give Me A Break

It has not been an easy year for me or my family. The struggle to find a path to a sustainable place of health feels harder than ever.

I am living in some type of thermodynamic hell. Everything I try comes with equally forceful reactions and I wish I could say more of them were positive.

Even when results look positive they have high costs that make me reconsider if I should have done it at all. Switching my immune suppression drug put my inflammatory markers in the best place we’ve seen them in years.

Alas it is so effective that I’ve had four major skin infections in 2025 of which four required going under the knife. And the fourth was caused by a small incision that was considered so safe and routine we almost didn’t consider antibiotics at all.

I just so badly want something to work in a way that doesn’t come with staggeringly high costs. Normally I’d link around to all the relevant posts but I just need a break so I’ll leave it as an exercise.

But can you imagine anything more depressing than having an infection on your ass? I sure can’t. I am stuck trying to keep pressure off of it while working on all the various projects of life and I am a slow healer.

I don’t even get to see if the HBOT is doing anything for my main concerns, as if it is we are only going to see it when I clear this crazy infection.

I suppose the good news is that one of the best treatments for high risk wound care is actually hyperbaric oxygen therapy so the positive and the negative are at least balanced.

Categories
Emotional Work

Day 1759 and Who Are We After Someone’s Death?

They say you shouldn’t make any significant changes after a death in your family. Grieving is a process and allowing oneself to feel the range of emotions in loss is important.

You might not feel your grief if you jump into something new. Making a change could be hiding your grief from yourself. And so I am trying to sit with my grief.

The loss of my father on the last day of the summer was both expected and painful. As I have had to find my own way to grieving, without being part of his memorial, I thought a lot about what life going forward meant as I honored our past and let him go.

I wondered about which parts of my history and my identity gave me my life. If I wanted to make changes in my future, or to broaden my horizons, what would it look like?

How could I be sure I was being true myself in the challenges of my chosen life and true to the deep and complex relationship I had with my father. All these questions arise.

Somehow I am happy. I feel more love for myself as I see the ways I tried to love my father, and how he tried to love me as his child.

Being who we are, means seeing the child in ourselves who wanted to be loved for who they were, while learning as an adult that acceptance is up to us, not the generation who birthed us. The liberation of birth anew.

I hope the many experiments I’ve run with my biohacking over the last two months are helping me stay in my body during this process. I am on my 25th hyperbaric chamber oxygen therapy treatment today. Which is fortunate as I am healing yet another skin issue as I try to find ways to have the strength to be myself in my very challenging body.

And so I wonder, am I the same without my father as I was with him? I am always searching for ways to become better, stronger, more informed, more capable, more successful and ultimately I fear those are all synonymous with finding ways to be more lovable to him? I couldn’t always tell.

I’ve found myself wishing to indulge a past professional calling with a side project. I’ve been writing a beauty shopping column where I go deep on my autistic special interest in skincare and the business of appearances. It’s been making me happy.

I have even decided make a special offer founding members who join my first year as I wish share some of my own happy knowledge. For a nominal fee I’ll build a routine from my cosmetics library and decant and organize the perfect skincare routine optimized exactly for the life you are living.

And so I ask does this count as a change? Am I jumping into something new, even if it is small, too soon?

All I know is that it feels right and like a joyful offering, even if there are parts of me that hurt. Perhaps there is a good kind of change to be had in endings with new beginnings. A personal passion once put aside, reemerges to serve others.

I think that is something my father would have liked to see me do. I have pursued so many of the things I know he wanted for me in this life. I do have a future full of technical change and a portfolio focused on the future of computing.

And yet here I am feeling freed to show that some aspect of who I am as a woman does want to serve others. If it is in the cause of helping be comfortably in your own skin that seems rather a positive thing to become after this life change.

Categories
Biohacking Chronic Disease

Day 1757 and Best I Can Do

I’m a bit hard up today as my recovery from my latest adventure in biohacking has had more twists and turns.

I am incredibly prone to subcutaneous and deep tissue infections from even modest and safe procedures. It seems this will simply be my reality permanently if I stay on the very effect anti-inflammatory medication.

I keep hoping I’ll adjust to the Bimzelx and the skin infections will be less of an issue but I’m on my 4th skin trouble of the year and I’ve only just reached what’s considered a full loaded dose.

I really don’t know what to do about it as it’s a major full year long process to change a biologic and adjust to the dosing so I may have to live with it. My inflammatory markers are the best they have ever been it’s just that I’m constantly getting some new skin issue.

So I’ve switched up the antibiotics to be extra careful on this healing but my brain is beyond fuzzed, I’m in pain, and I’m quite tired so I’ll just have to let today be what it is and pray the new antibiotic gets me to a better tomorrow.