Tag: Infection

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Chronic Disease Medical Politics

Day 1895 and If Not Us Then Who?

Despite persistent efforts to mitigate the downsides of my various medications, as well as maintaining dedicated wholistic lifestyle routines for my chronic diseases, I am not making adequate progress. I’d go so far as to say today it feels like I am sliding backwards.

But that is partially a function of luteal phase acute migraines and not the full picture on the ground. Yes, it’s true multiple metrics have gotten significantly worse over the 15-month span of my IL-17 inhibitor experiment with Bimselx and I am preparing to make the decision on what to do next. Many biometric markers are much better but the trade-offs are severe. It just feels like I can’t overcome them right now because I feel awful.

Nevertheless it’s important to remain grounded in the here and now. I think part of my trouble may be I am adjusting both to a new time zone and my normal altitude. Maybe I’m overly concerned by data points that will get smoothed out over time but it feels very spik.

Alas there is little room in life for downtime or bad days. Portfolio companies are fundraising, politics is getting uglier by the second, and one key blocker in my life has remained unsolved now for years.

I’ve never experienced a blocker quite so persistent as the American State Department’s handling of visa and immigration work. And yes that includes being disabled and chronically ill. That’s how bad state capacity is right now. My years-long attempt to get visas for family members to come help has not seen an iota of success.

But we keep going. There is much to be done, both practically and at higher levels of abstraction, and I am being whipsawed by hormone migraines over the last 48 hours. It is not an ideal time for weakness in one’s body.

Yesterday the best I could do in terms of writing was some rambling about my irritation with new retail sales cadences at Sephora feeling down market. Not that I necessarily need this space to be filled with decent content but I know that I am not running at even 10% capacity.

We all have to contribute our talents to this moment in time and there are projects that I wish to commit more time and energy to, even though it feels like it may be the death of me. But if not me then who? It’s a question we should all be asking ourselves and I hope more of us rise to the challenge.

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Medical

Day 1884 and Post Op Shop Bop On The Head

I am a stricken by the malaise that comes with minor injuries. Yesterday I had some dental work done (with a laser) and today is all wretched inflammation.

An affliction that requires recuperation gets me down as I can’t say I’m really miserable or in much. I live with worse pain whenever I flare with my ankyloysis. I just feel pretty shitty and my brain is slugging slowly through the muddy waters of stress toxins.

It’s m the mixture of stress, antibiotics (doctor recommended prophylactic course given my soft tissue infection risks of my biological injection) and the tide going out in the cortisol. Being flooded with cortisol is not just a meme.

And so I don’t recommend being this in this state, but you also need to do proper care and maintenance of things like healthcare. And your teeth are a core part of this. After a certain age you can’t just ignore problems. And so I’ll be on Twitter as I can’t concentrate well enough to do much useful today. And my husband will kill me if I do any more cosmetic shopping.

Categories
Aesthetics Medical

Day 1883 and Fill Me Up

I mentioned yesterday I needed to get my lower left molar 19 fix up. The filling placed there long ago by a dental student wasn’t holding up well and looked pretty nasty

A warning for the squeamish that I am going to post before, during and after photos. If things like gums, blood, funky messed up teeth close ups are upsetting to you this is where you should stop.

I was schedule for an hour as molar 19 needed a new filling while 20 was also looking a bit funny as well. First they carefully numbed the left side of my mouth which always feels weird. You feel no pain just pressure. Which is an experience I’ve had a few times this year.

A cleaning was required as well as a cool laser which smelled like popcorn as it zapped out the damage areas.

These hard‑tissue dental lasers (mainly erbium) ablate tooth structure by rapidly heating water and hydroxyapatite in the tooth, “micro‑exploding” tiny amounts of tissue rather than cutting mechanically like a bur.

Erbium laser preparing teeth decay for a small filling on 19 and 20

These systems are typically used for small‑to‑moderate decay especially when soft tissue injury is concern. These lasers can mean less pain and less anesthesia is needed.

A composite filling matched exactly left my teeth looking as good as new. My mouth is still a bit numb but I’m glad to have things fixed up with relative ease. Now I can only hope the healing goes easy as well.

Categories
Emotional Work Medical

Day 1865 and Letting Things Fester

I let something fester for far too long. A family member had some health troubles that were not immediately threatening and I didn’t want to push them. They promised to see to it after a lengthy set of other issues were resolved.

Well, now the list was all finished or at least that is the rationalizing we are all doing around it, as it’s gone too far to be left alone. And it has to be seen to with a surgery.

Now they are healthy, young and the damage can be undone with a little science but I can’t help but feel I failed them. I knew they were leaving it to fester but the first rule of medical ethics is informed consent. The patient chooses even if you think you know better. This goes for doctors just as much as family.

And so here I am feeling guilty that I knew they were putting it off based on actions that I was partially responsible for resolving. They kept pushing it off citing this and that needing to be done first.

Now budget was an oft cited reason and I aid on that to some degree but it was really about a whole tangle of issues or managing till it was unendurable. And I don’t control their endurance or capacity to tolerate discomfort.

I know I couldn’t have done anything to force the issue, especially when the pride of an individual is concerned, but I still feel like shit about it.

Why couldn’t I have pushed forward the other issues and projects to rid the excuses? Why wasn’t I more forceful insisting they get it looked at sooner?

You know how guilt works when you have some responsibility but no ultimate say in the doing of the deed.

Not only did they let it fester but now it will fester with me as I try to forgive myself for something I couldn’t have changed. The body is sovereign and it wasn’t mine so I better let it go and help them recover.

Categories
Biohacking Medical Travel

Day 1856 and Always Something So Always Trying Something

The world is a topsy turvy place and I am doing my best to meet it head on. Physically I’ve managed a surprisingly steady period from December through January, even though I spent a decent portion of that on the road.

I credit this mostly to using antibiotic and anti-fungal regimens prophylactically. The biologic immune suppressant I currently take for my ankylosing spondylitis is quite frankly too good at its job. And I’ve tried quite a few.

That means I am locked in a battle of constant vigilance in order to keep my inflammation numbers down while also not becoming a host to bacterial, fungal or other infections. It’s a balance that is anything but delicate.

In 2025 I had been unable to fight off skin, soft tissue and mucosal infections seemingly at all. Even with extensive protocols for decolonization (intranasal mupirocin, chlorhexidine washes, environmental decontamination) I had four major infections.

Of those infections, three required surgery and the fourth was the result of a very minor incision to insert testosterone and estradiol pellets. Those surgical interventions proved very trying and also very expensive.

The last one (testosterone) helped quite a bit with energy but being energetic doesn’t matter much if you can’t fight off infections.

So while I know there is an individual and social long‑term systemic risk in using antibiotic prophylaxis, I will say it does seem to be helpful in mediating say outbursts of allergens flaring into soft tissue infections from skin breakage or having exposure to molds and fungal growths that fester in old damp buildings and water systems creep their way into any opening available.

Since it is always something, I figure I need to always be trying something. Frankly I am over the push and pull of managing medical care in America. It’s a mess and mostly designed at risk mitigation for the health systems.

I have found going abroad to be much more useful and cost effective in many cases. I may even find that it would be useful to document the experience in a format beyond a blog as I doubt I’m the only person manage complex chronic disease.

Categories
Chronic Disease Medical

Day 1814 and Spicy Boi Shots

I’ve been trying to coax myself into taking my final biological injection of the year for most of the day. It’s a very painful shot. The feeling of it is somewhere between stinging and hot sauce being pushed into your subcutaneous fat. It’s spicy

I switched my IL-17 inhibitor for my inflammatory conditions as one of my first actions of 2025.

I was filled with optimism that this new variant called Bimzelx might be the one that finally brought down my biomarkers. And it did indeed show promising results. My CRP and SED rates have never been better.

Alas, the cost is quite high. I’ve got no immune system response to speak of when it comes to my skin and soft tissues. I’ve had four major skin infections requiring surgical intervention and many minor skin infections.

I don’t think I can live with the side effects of the drug even if my inflammatory numbers are better. There is no doubt it’s effectively treating some aspects of my psoriatic arthritis, axial spondyloarthritis, ankylosing spondylitis.

My pain is better so long as I can avoid picking up an infection. I’ve been on antibiotics most of the year. Alas I’ve only had maybe 2-3 weeks without an infection brewing or being beaten into a retreat.

So today may be my last spicy shot. I’ve gone it a full year of adjustment. I don’t relish the prospect of adjusting back to my previous medication as it takes a full year to fully dose on and off these things. But maybe I’ll be lucky and on my final shot in the year I’ll see a change for the better

Categories
Chronic Disease Emotional Work

Day 1806 and Trying Not To Upset My Proverbial Applecart

I have had way too many minor (and major) health problems emerge over the course of 2025. Adding in personal life tragedies (the death of my father) and I had a challenging year.

So I trying to keep the last few weeks of the year crisis free. I have already pulled myself out of the day to day to try for a slow wind down of the year. No holiday parties or appearances for me. I am gone.

As I slow down and put distance between myself and the world, I maybe stupidly see it as an opportunity to nudge myself on little health promoting efforts.

After the year I’ve had, I so desperately want to see improvements. Even if simply not collapsing into another infection cycle is a win.

I’ve been trying to consistently work on body basics like muscular compensation patterns and getting more steps each day, but I’m so terrified that even a minor miscalculation in exertion will upset my proverbial apple cart.

I went for a walk on a high mold count day and reached for prednisone. I’ve been teetering on the wrong side of recovery for so long I don’t think I can recall a genuinely good day. My sleep is similarly impacted. I want to have a long night of deep sleep and dream cycles but the best I can manage is just a long night.

Categories
Aesthetics Biohacking Chronic Disease Medical

Day 1787 and On The Same Wavelength

For someone with clear skin on my face (not even a humble brag), I spend what feels like irresponsible amount of time and energy on my skin health. The rest of my dermis is not as tractable as my face. I’ve been fighting eczema my whole life.

This year has been a particularly challenging, as my the IL-17 immune suppressant Bimzelx, I take for my ankylosing spondylitis and psoriatic arthritis (it’s eczema on the inside), has left me almost catastrophically prone to skin infections.

I’ve had maybe 3 weeks without a disaster (and I traveled) though have still needed doxycycline so I’m optimistic.

I am hoping I can rack up a few more weeks or maybe even multiple months without needing to slice an abscess, manage a deep tissue infection, or get a subcutaneous skin infection.

I do have a new weapon in my battle to keep my skin healthy. I recently acquired a new deep infrared cosmetics mask from Beauty Pie that they are calling “medical grade” but mostly means it has one longer wavelength than their previous mask offering.

Beauty Pie
The Dynamo Deep LED™
Medical-grade technology
Collagen-Boosting Mask $238
  • Medical-grade LED mask proven to improve the overall skin complexion
  • Using 1070nm – the deepest penetrating wavelength used in at-home LED devices to date – to reduce under-eye bags and puffiness, and smooth texture and tone
  • Helps the skin look fresh & hydrated. Using 830nm – supports the skin’s natural restorative and healing function – to boost circulation, improve blood flow, and increase oxygen
  • Skin looks plump & glowing. Using 630nm – enhances the production of collagen and reduces redness – to leave skin radiant and hydrated

I don’t know if it will do much but the longer wavelength is an improvement on their past mask which required something closer to 4 months of continuous use to see results and I was simply never off of antibiotics that interact negatively with red light long enough to get any results. Theoretically I should see results in a few weeks with the longer wavelengths.

I can’t recommend it yet as I just got it and I’ve only used it twice but I used it on my face, my neck, my left butt cheek where I had the infection from inserting testosterone pellets (long story if you missed that one) and on my scalp to see if I can stimulate some growth on my scalp as I shed a lot of hair this year from the stress.

That’s about 40 minutes of mask time so no joke but also pretty amusing. I hope I can use it enough between antibiotics rounds for a win as infrared is meant to do a world of good for pain and inflammation in addition to cosmetics so I’ll use the heck out of it while I can.

Categories
Biohacking Chronic Disease

Day 1786 and 40 HBOT Sessions Later

The days becoming shorter has hurt my attempts at getting out in the sun for a walk every day. This matters to me as I’d like to get regular readings of my V02 maximum and my heart rate. I rushed out without sunscreen to get in a mile.

I hit an important milestone in my current biohacking regimen this week. I made it to my 40th session of hyperbaric oxygen chamber therapy or HBOT. I began on September 13th and did session 40 on November 20. I only traveled once during this period (a five day trip) so I could have fit it all in within a two month period but I was consistently doing two hours a day.

I intend to get bloodwork for comparisons next week, but in some ways this was a terribly experiment period. I had a small procedure to insert testosterone and estradiol into my left buttock which turned into a saga when I got a skin infection. Not the procedure’s fault and I’m glad I did it as my numbers are already better.

Fortunately HBOT is renowned for healing soft tissue infections so if I was going to suffer for having compromised immune health across my skin biome, then at least I had the state of the art treatment available.

We didn’t purchase the HBOT for its skin benefits. In fact, I didn’t even know I’d be have skin immunity issues. They began with my new IL-17 inhibitor which I started in January We’d acquired the HBOT around the same time but I had no idea how challenging Bimzelx would be. It could have gone worse.

We had originally acquired the HBOT as several of our friends and acquaintances had succeeded in managing impressive inflammation rate reductions as well as progress with a slew of autoimmune issues from long COVID to mold toxicity. The kind of troubles we only test in fancy labs with extreme athletes or the enterprising technology brother.

My wound has mostly healed save a small lump, my V02 max has improved despite virtually no exercise (hard to do much cardiovascular exercise with an infection in your posterior chain) and I have overall found the balance of improvement in my energy and pain to be significant.

Thanks for noticing Whoop

If I could just get a month without a health crisis where I have enough energy to workout consistently I just might make some progress. So if I disappear for a bit that will be what I’m doing. Once I’ve got bloodwork I will share obviously.

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.