Tag: Disability

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

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
Biohacking Medical Startups

Day 1753 and Vibe Coding for Your Skin Health

Many moons ago, when I was first attempting to get a diagnosis for why I was always in pain and exhausted, I got a battery of allergy tests. I did the “gold standard of allergy testing” called patch testing which is a form of pin prick testing designed to pick up responses that may be delayed.

It was an awful experience. I barely made it through the 5 day trial between the 100 allergen pin pricks and final measurements.

I remember begging the doctor for a way to measure early. I asked if I could take some Benadryl to take the edge off. Alas the only way it would be accurate and covered by my insurance is if I gutted it out.

You are not allowed to shower, sweat, be exposed to UV rays (no going outside) or take immune suppressants that might subdue your body’s response.

I was struggling to breathe, my entire body itched and ached, and I had a migraine so bad I couldn’t see for the stars & dizziness. It’s possible I wasn’t stable enough to have adequately consented to the test but I did get my final results.

Out of 100 common allergens tested it was confirmed I was extremely allergic to 10 of them with another moderate sensitivity set of twenty or so that I should merely try to avoid as opposed to my firm “no go” list.

The dermatologist gave me a sheet with 75 different chemical names and formats that I might encounter in the wild from these core allergens:

Budesonide
Ammonium Persulfate
Benzisothiazolinone
Limonene
Oleamidopropyl Dimethylamine
Formaldehyde
Lauryl Glucoside
Methylisothiazolinone
Propolis
Thimerosal

I instructed to search ingredient lists for these names any time I purchased a household product, personal care item, cosmetic or other item which might include these ingredients which ranged from nail care to vaccines.

It was honestly quite overwhelming. And some of the above ingredients are in basically everything. I dare you to avoid Limonene for a month.

So my husband and one of our best friends did what any practical minded engineer would do and they made me simple Google sheet where all 75 varietals could be checked if I plugged in the ingredients from any item.

I used it for years. I’d plug in the INCI from every brand I encountered into the sheet no matter what. I gave away a lot of products to friends.

Today it occurred to Alex that we should probably vibe code the thing into a proper web application using Replit so other people could check ingredient lists for their own allergies.

Within two hours, most of which was waiting on the kindly AIs to do their thing, we had a fully functional web application.

You can set your own allergens or click a few buttons for common allergens and “clean ingredient standards” and run a check for an all clear.

It isn’t super fancy but it doesn’t need to be. It just needed to keep your data safe, be easy to log into so you can securely check and access your personal list and generally functional enough to change and set allergens. We’ve put it on our own little domain just to see how much this will cost to run (and we’ve set up alerts so it doesn’t go bonkers) but we figured this should be accessible and simple.

And while there are other options on the market, most are bloated, overly paranoid and designed for scaring California moms rather than quickly helping people with clear preferences for avoidance and actual tested allergies. So hopefully our pain can help you breathe easier.

Some options for chemicals and irritants you can select on our app.
My own settings of allergies and sensitivities
Categories
Biohacking Chronic Disease

Day 1732 and It’s Getting Hot In Here So Take Off All Your Clothes

You might want bring towel though, as our handcrafted Finnish sauna will need some use before the cedar is completely smooth. Yes, that’s right, the MilFred family Yellow Barn now has a sauna. And she is a beauty. Just check out the view we picked for her.

Alex and the wonderful family who built the cedar sauna structure placed her under the back awning of the big yellow barn today. Wiring and electronics are underway as I write.

We’ve been slowly but surely turning our barn into our ideal wellness center both for our own use and eventually for the wider community as well. We are privileged with skills, capital and loads of very expensive personal experience with chronic illnesses.

So naturally as geriatric millennials it is always our instincts to turn our pain into something useful and also if we are lucky pay back the expenditures and turn a profit. Which we can then reinvest. It’s the circle of life for a generation who found the circle of life to be a tad more inflationary than expected.

The man of action putting the finishing touches on the electronics. We don’t have anything in our home systems connected to the cloud, so he built his own fully local controller with
ESP32 as the brains, 60a 240v contactor for heater, RGBW LED controls
UI/ final control via Home Assistant and HomeKit. You can snag the code on GitHub

In true MilFred fashion, we are building and testing everything all on ourselves. An n of 1 is good, an n of 2 is better, and if you’d like to test it out hit us up while it is a work in progress. Build in public and beta test with your friends.

Tucked under the awning of the barn so one can easily pop in from gym, HBOT or cold plunge to warm cedar comfort and mountain views

We’d like to ultimately build a space for healing, relaxation and training for those who prefer time tested modalities like heat, cold, oxygen and pressure.

Friends and family can come and test out our now very impressive range of equipment as we build this all out.

We have one of the few hyperbaric oxygen therapy chambers available outside of hospital use in the region. You can pressurize to 2 atmospheres and set a range of parameters for a range of treatments. I use it for my inflammatory condition while Alex is treating the remains of long covid. You’d be shocked what pressure and oxygen can do.

Our hyperbaric oxygen therapy chamber

If you want a work out get in some squat reps in our power cage, take a swing at the punching bag or lengthen your spine on our Pilates reformer. You can even climb around on the rock wall built into the the barn ceiling (not even kidding that is the work of the previous family).

If you are looking for a spa day you can have a sweat in the sauna, do red light therapy on your face, chill out on a PEMF mat, and hopefully soon take a dip in a cold plunge. Though if you are ambitious you can sprint across the front pasture and jump in our pond but I’ll warn you that the ducks might not love it.

The pond is fed by a creek that comes from the canyon above our house

The point being that we are building by hand and through personal experience something that improves our lives and others and that’s a pretty hot thing to do. Don’t worry, we will provide towels and robes if you do indeed take off all your clothes. Just come on over and try it out.

Categories
Chronic Disease Politics

Day 1730 and Steering The Titanic of Adult Habits When Icebergs Are Ahead

We are all us humans on the good ship Lollipop. I mean this as a stand in for Mother Gaia/Terra/Earth. We are all in this together right? Wrong? Who knows.

I happen to be on the America decks, so even if I can see the sea is perilous the orchestra is still playing. Maybe I’m rearranging the deck chairs. Is there anything that can be done to steer myself away from collision other than seeking a life raft?

It’s a kludgy metaphor but I am personally trying to move around several of my own ingrained adult habits with the hopes that I can change the direction of life for smoother sailing.

It’s hard to retrain your body after years of pain, compensating biomechanics and environmental factors beyond one’s control.

I’m putting on my life vest and trying to steer myself well so that I save myself and maybe in doing so save others.

If anyone has physical therapy videos they recommend I am working to retrain muscles that are compensating for my thoracic ankylosis. I also intend to go in person to physical therapy if possible.

And onto other topics less bleak than avoiding disasters, both personal and political, as you can indeed do more than you imagine to steer your own life here is some inspiration.

I enjoyed reading this piece on the rise of the online schizo and how to protect yourself as someone who is burdened with a strong case of apophenia. Worth a browse if you are concerned about your cognitive security online as no one wants to catch a Babylonian death cult meme virus.

Audrey Horne has a new substack called Secret Ballot where my friends and mutuals make some appearances and it includes a good calendar of social events in D.C if that’s your thing.

If you are following AI and eschatology (and really who isn’t these days) you may have heard about the Peter Thiel anti-christ lectures. I’d love to brag about being invited but I didn’t have the chance attend what with death and illness. However this two part interview with Thiel at the Hudson Institute covers the basics.

I spend a lot of time on artificial intelligence policy thanks to my advocacy on Montana’s right to compute law as well general interest in enabling more people to maintain the level of control and access they seem appropriate for their own lives. The right to repair movement is the seed for a wider right to compute movement.

On that note Alex is building automation into the sauna being built and has put the code up on GitHub if you are into that sort of thing. You have a right to build things and own them and no one is forcing you to buy convenience if you would prefer to keep your data on your own servers. Even if it’s the data for your air conditioning or your sauna.

We’re building a sauna and I don’t like anything at home connected to the cloud, so I’m building my own fully local controller
ESP32 as the brains, 60a 240v contactor for heater, even has RGBW LED controls
UI/ final control via Home Assistant and HomeKit

Categories
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.

Categories
Biohacking Medical

Day 1723 and Hormonal Rollercoaster Rides

We spent a long time at the doctor’s yesterday as Alex and I gutted it out with our excellent physician (with AI assists) through a myriad of different tests. We were attempting to figure out why he keeps getting respiratory infections and why I’m such a tasty treat to skin bacteria.

In truth, my basic inflammatory biometrics have improved so much on the new IL-17a inhibitor Bimzelx that it’s probably worth the hassle of occasionally having to slice open a random effected gland or abscess once a quarter. It’s just a shocking amount of work to do whack mole with pathology reports.

What I don’t seem to be able to improve is my low testosterone and the flavors of migraine headache that come with the roller coaster of my luteal phase. Which is presumably a clue and we are following it.

Astonishingly my lady hormones are in tip top shape. Though the “you should have no trouble getting pregnant if we can get off the medicines that stabilize you” remarks remains a heads trip. Yes I asked.

It is not a head trip that makes one’s husband enthusiastic about the prospect. Which is fair, as we have no family support, no backup plans for me regressing physically, and the family that does support us can’t get to America. So one can see why a CEO husband with sick investor wife who would have to give up work, plus potentially messed up baby, isn’t super appealing. Anyways! TFR is a fun topic.

I started with basic supplements in the precursor category like DHEA and STRO about a year ago when my testosterone came in at a 2 nanograms per deciliter (ng/dL) when it should be somewhere between 9 to 55 nanograms per deciliter (ng/dL). For context, adult men typically have levels in the 240–950 ng/dL.

The one sticky widget is that my testosterone remains stubbornly low. You wouldn’t think such a raging “see you next Tuesday” such as myself would be overburdened with the feminine hormones and lacking in ball buster hormones but I am.

I managed to eke it up to 5 with supplements and nutrition but it really didn’t match my otherwise excellent hormonal profile. Having ruined my chances at a healthy immune system when we tried the first half of IVF, I’ve spent some time working on and with my natural cycles.

Good information for all humans

I loathe being in my luteal phase but when I’m in my follicular phase I get 90% of my work done. We had presumed it was the rapid decline in estrogen and progesterone but maybe my floor rate testosterone was more of the issue.

For the past 8 weeks I’ve been using a testosterone cream that clicks up your dose and you rub it between your thighs. I know it’s gross. So I was curious to see where I might land. And praise the Lord I am now at 15 ng/dL. From 2 to 5 to 15 is some excellent progress but still below where we’d like me to hit. So we are going to run another test and try out the tiny pellets they slice into your skin. Since I’m already used to scalpels and antibiotics I figure why not?

Categories
Biohacking Chronic Disease Medical

Day 1719 and Biometric Fall Lock In

I slept rather poorly last night. I get anxious before medical appointments. Interfacing with America’s medical system can range from merely uncomfortable to actively hostile so I suppose some heightened vigilance isn’t irrational.

I wanted to get a fresh set of bloodwork after a summer of fairly involved medical intervention. It ranged from deep tissue infection discovered during a minor surgery to multiple rounds of antibiotics. I have experienced a lot of side effects at full strength.

I am also beginning a 40-60 session hyperbaric chamber oxygen therapy protocol and I thought it wise to get the basic bloods for a before and after purpose.

I really yearn for an uptick in qualitative metrics I associate with higher quality of life like energy for my favorite physical activities (weightlifting and hiking). The fatigue and stress from the pain, and downstream side effects are constant reminders of poor health.

So I am looking for improvements in basic markers like my CRP and Sed Rate as those inflammatory markers should coincide with the qualitative improvements.