Tag: Chronic Disease

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Biohacking Chronic Disease

Day 1536 and Backward to Move Forward

Much as the winter has been hard on everyone in my close circle, I don’t particularly want spring to arrive. I’d rather have a pleasant winter follow the unpleasant one instead.

I woke up to fresh snowfall this morning after a hard night. Some previous stressor is making my hair shed. Pain has wrapped itself tightly around my intercostal as it radiates from my thoracic spine. I feel as if I’m fighting a light infection as I ran a fever yesterday and today.

I only have a few days till my next loading dose of my new biologic drug Bimzelx which is a new type of IL-17 inhibitor for my ankylosing spondylitis and psoriatic arthritis. Bimzelx targets both IL-17A and IL-17F, while my previous protocol Cosentyx targets only IL-17A.

Changing medications is a whole thing that introduces way more unexpected problems even with the best of planning. See for instance getting my eyelid sliced open twice to manage an infection. Neat right?

Oh and don’t forget the mold issue. Figuring a solution to our master bedroom and downstairs mold issues means we’ve got some destruction and renovation that we probably can’t accomplish before the summer.

Which is a bit of a bummer as our guest floor isn’t as well air conditioned. Add in the late evening light and I expect the next two seasons will be challenging to make progress during. But sometimes you have to go backwards to fix existing problems in order to move forward.

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Biohacking Chronic Disease

Day 1535 and Telogen Effluvium

In what has become a real persistent mood this winter, I have another dumb problem. I am losing my hair. Literally.

As it turns out stress can trigger hair into mistakenly going into what is called a rest phase. Perplexity tells me this is a temporary condition where significant stress pushes large numbers of hair follicles into a resting phase, causing shedding within weeks to months.

I have a lot of hair so it’s only really noticeable to me but I am tired of unexpected problems this winter. Obviously I have been under some stress and it feels like punishment.

Thankfully virtually all people diagnosed with it recover once the underlying stress has passed. It’s commonly associated with giving birth but it seems any significant or stressful event can trigger it.

Hair regrowth typically begins within 3–6 months. In most cases, up to 95% of acute TE resolves completely without long-term effects on hair density.

My vanity is pleased this temporary. I can certainly take it easy and pull back from unnecessary stress. Plus it’s a great reason to overspend at Sephora on new haircare. There is a bright side to everything.

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Medical Preparedness

Day 1525 and Turbulence

I am doing what I can to hold steady in the turbulence of the moment. Deals are still getting done, founders move companies forward, I do my small part to contribute in the strange dance of rounds coming together.

It has not been easy with both my husband and I seemingly rotating between one health issue to another. It would be nice to have us both healthy at the same time.

Because it is the winter of our discontent I’ve spent more time on Deep Research projects this past month than seems sensible but the urge to find solutions is strong when your health needs mending.

Plus it saves a ton of time when the alternative is calling a bunch of different experts and making progress at best every two weeks with appointments. Scheduling health care of any kind is a mess.

I remember realizing so vividly during Hurricane Sandy that no matter the catastrophe the rest of life went on. Everything will feel turbulent in our new high variance age and all we can do is live through it.

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Medical

Day 1524 and in the Red

The MilFred family household is not at its finest. My husband Alex seems to be in the throes of pneumonia while my body is doing its best to manage a host of medication changes.

We have all the typical work while this goes on along with a few other crisis management projects (mold). All dashboards flashing red.

I keep toying with posts saying I’ll have to consider if this is where the habit goes away or that I need some do not disturb time. This is certainly a big part of why.

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Chronic Disease Startups

Day 1519 and Steady

I am doing my best to remain steady. The world at large doesn’t make it easy. Every day we have a new crisis, impending doom and looming fascism.

I would be more inclined to reactivity if it didn’t seem much more important to pay attention to the actual problems over which I have some agency.

Some days that agency is used on frustratingly small things and others it’s the most fantastical science fiction come to life in our day to day reality. The indignities of human embodiment and the miracles of applying knowledge to problems exist in the same reality.

There is so much pretending and posturing in the process of pursuing any goal, it’s understandable that people mistake the symbols of things for the thing itself.

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Medical

Day 1517 and Blink Blink

I’m writing this in the waiting room of the new hospital campus in Bozeman. We’ve recently had an outpost of the Billings Clinic go up alongside the highway between Bozeman and Belgrade to keep up with the growth in Southwest Montana.

It’s really nice and absolutely packed with people. The average age looks to be early seventies so it’s not a young crowd in the eye clinic.

The only other mid-life people besides Alex and myself is a prison inmate in a yellow jumpsuit and his two Corrections officers. I had half a mind to go ask him what he was in for while showing off my own deformity m.

I’m unsure if it’s a side effect of changing medication or just plain bad luck, but I have an infection in my right eyelid. It started about a month ago and looked like it was a simple chalazion.

It’s sometimes called an eyelid cyst or a meibomian cyst. It slowly forms when an oil gland (called a meibomian gland) becomes blocked. Cleveland Clinic

But over the last month it went from painless little boba ball sized lump to my entire eyelid being swollen. It got much worse this week especially as I started applying wet washcloths to it regularly.

They were able to perform an incision and curettage (don’t click through if you don’t want to see some gnarly eye stuff) as my discomfort was pretty intense. I desperately wanted it drained and they did not disappoint.

Just wiping up the last of the pus

I hope this heals well and without issues. I fear this was complicated by the changes I’m meant to undergo in my medical protocol from one IL-17 inhibitor to another.

To soften any backlash in symptoms during the change I’m on another immunosuppressant so I’m particularly nervous about infections especially when it comes to sensitive areas like the eyes. I’m glad I was able to get this drained but I’m a bit nervous about how it will heal.

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Chronic Disease Media

Day 1509 and Wrapping My Arms Around The Problem

I am seeing some progress in my various home and health projects. I’ve been doing my best to remain optimistic even though I was not feeling well and the sheer amount of changes required was intimidating. But I’m seeing low progress.

An industrial hygienist is coming to do an arm test tomorrow on our basement as well as the rest of the house to confirm the extent of our mold problems. Our hope is that it’s contained to the bathroom in the basement.

If we have to do a bathroom remediation that presents an opportunity to do some renovations. While exciting that is also introducing more risk. But you can’t waste a crisis right?

Stuff I Read

The Agent Problem

CoinDesk reporting on the Libra scandal in Argentina

Politico: Voters Were Right About The Economy

Epsilon Theory “It Was Never Going to Be Me”

Categories
Chronic Disease Emotional Work

Day 1506 and Breaking With Convention

I am in a challenging spot at the moment with our household mold issue and my attempts to accelerate changes in my care protocol for my autoimmune condition.

When things are challenging physically I find myself in tension. I want to share and be open in my experiment to write every single day. I am afraid that I’m doing nothing but share weakness by doing so.

I don’t want to telegraph only strain, illness, and struggle. Sure things are hard at the moment, but I am more than my current local minima conditions. Things are quite good.

Just because I feel too weak to articulate all the areas of strength doesn’t mean they don’t exist. I just can’t put them front and center right now.

This frustrates and even angers me. Large long term projects and investments are thriving and rather than focus on those I am curling into the fetal position and wishing I could disappear until I’m able to advocate loudly and proudly for my wins.

Categories
Chronic Disease Emotional Work

Day 1504 and Dead of Winter

For as exciting as the last few weeks have been it’s hard to feel like as it’s the dead of winter. I’ve not gone outside in several days as we are in -20 land which probably contributes to fatigue. Thankfully it’s bright and sunny.

I don’t have anything useful to say as being in the middle of multiple health projects is a time suck. Any excess energy goes to work as there really is no way of stopping progress. I wish I could keep up as it’s exciting.

Partially because things are so “out of bounds” I can feel more comfortable prioritizing long term gains and changes. I think I can achieve a health level up and fixing it now prepares me for strain later.

I take this approach on everything now. The short term has been set by decisions in the past and the medium term is highly uncertain. Steer correctly now so future you is set up to succeed.

Categories
Biohacking

Day 1503 and Project Managed Health

You have to work the problem in front of you. Fixating on past problems or potential future problems does not fix the problem in front of you.

Bottlenecks are such a useful construct as most humans have experienced their all of their progress being stymied by one single obstacle. Be it a fallen tree in the road, a bureaucracy or a health problem, the bottleneck stops you.

Alas I find myself with multiple health projects that have to be project managed with timelines, budgets, and externalities on each other.

We’d been planning to start a new care protocol with an updated biologic but the discovery of mold in the master bathroom is a bottleneck.

We need to decide if starting new immune suppressants is safe in the house before remediation. Mycotoxins at a load marked as unsafe for autoimmune conditions makes me nervous.

Sure we are staying upstairs but is it removed enough to be a sensible move? Can we isolate me and begin treatment? Do we wait the multiple weeks remediation will take? How an we run parallel paths. It’s crazy to project manage one’s personal life like this but it’s also necessary.

This excitement has also slowed down movement on acquiring a hyperbaric chamber. I’d love to offer it as a service locally as there isn’t a single available one for off label use in the entire state.

I really do think this would feel unmanageable if we didn’t have new tools at our disposable. In particular the new ChatGPT’s Deep Research has made it much easier to find different bits of information to reach an actionable conclusion. Because I want to clear these blockers.