Tag: Disability

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Biohacking Emotional Work

Day 1920 and Walking The Dream Roads to Costco

Yesterday I was really struggling with pain. It was all I could do to scribble up an appreciation for my 18th anniversary using WordPress for my writing.

I am doing everything I can to biohack my way around a chronic autoimmune condition that interferes with my quality of life. My love for my life and work is strong.

Sometimes it is strong enough that I willingly try all kinds of therapies from oxygen to hormones. Now I am working through a hormonal treatment recovery (my 2nd attempt) as I believe it is working.

Of course, life happens constantly, which means juggling deep dark horrific pains while the business of war and the business of my own portfolio goes on.

I’ve not had good sleep this week between the excitement of huge wins and the terror of facing down another global crisis brought on my conflict.

You’d think I’d be used to it. Russian invaded Ukraine the week before I left to live in Frankfurt. I was living in Tallinn when 10/7 happened. I was also there when Estonian cables to Finland were cut. One of my best performing companies has had to work around three kinetic wars.

No wonder sleep can be elusive. Yesterday all dream roads carried me to horrors. I woke myself multiple times. You can literally see in my sleep tracking the spiking heart rate and my forced waking.

The positive side to this fitful pained sleep was being up early enough this morning to prepare for a Costco preparedness run and still arrived before their executive member hour was finished.

We rotated our basics like rice and beans. Tinned fish, chicken and other canned and stable shelf proteins are just part of preparing for a nightmare that we hope never comes. Preparedness is a civic obligation. Help yourself to take the strain off the system so we all make it.

It’s possible we are facing an industrial process cascade thanks to the war in Iran and I like us have supplies just in case. We can’t know what comes next but it’s good practice to check expiration dates and make sure you have everything from first aid kit supplies to soap. You’d be surprised at just how much processing fuel fuels the rest of the world’s production.

After all this, I was happy to get stumble into bed and take a long nap. I didn’t even wash the sunscreen off my face. I was running a deficit and wanted to have REM sleep where I wasn’t trapped in horror. Thankfully I got almost two hours of restorative sleep this afternoon and I am ready to go back to bed as soon as I can.

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Biohacking Medical

Day 1915 and Physiological Stressers

Last October I did an experiment to balance out my core hormones by inserting pellets of testosterone and estradiol into my left buttcheck.

We’re started me with 10mg of estradiol (range 6-25mg with 8-10mg being most common), and 75mg of testosterone (range 50-150mg with the most common being 75-100mg. Day 1748

If you are interested in learning why women are optimizing their hormones, Cate Hall wrote an amazing piece on how it affected her life. A week or two after I did my own experiment the New York Times did a long lifestyle piece on the treatment’s growing popularity.

I had been working to raise my testosterone level to a baseline minimum with diet and supplements like DHEA with mixed success which is how we ended up trialing this new pellet method. And it worked very well very fast you can see from several rounds of bloodwork.

We did not do the full 75mg but landed around 62mg in the pellet which raised my testosterone right off the bat. It then quickly dropped off from very high to comfortably high. This go around we will do a lower testosterone dose to start and a lower estradiol one as well and test within the month to see if we can moderate them better over time.

Alas I did have some complications on my first attempt as my insertion sight got infected rather badly and took over a month to resolve.

If thr last fifteen months on my immunotherapy Bimzelx has had a theme it would be soft tissue infections. I am however as far out from a shot as I can be and am planning to stop it entirely as a girl can’t spend her whole life on antibiotics.

Though I am on quite a dose at the moment as we won’t make the same mistake twice. We stitched me up and prophylactically began a dose of a very intense antibiotic with the hope that I won’t lose a whole month of the four that these pellets dissolve through fighting cellulitis.

My goal is a balanced blend of estradiol, testosterone and progesterone so I have energy and focus and maybe fewer migraines during my luteal phase. You may wonder why I share all of this personal information and I wonder why more women don’t share it. We are in a brave new world of challenges in our healthcare and environment and the more we can share with each other the better our chances at finding solutions for all of us.

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Biohacking Chronic Disease

Day 1914 and Restoration Hardware

Montana spring doesn’t come at the Equinox but today we had both sun and warm temperatures. I am grateful for the weather as I needed a day of restoration as I felt quite rundown from my sprint through Washington D.C last week.

After a morning walk to take in the sunlight, I went through my collection of “restoration hardware” in an effort to build my resilience. I am restarting another round of hyperbaric chamber oxygen therapy as it has been four months since my original 40 session course.

I ran my infrared mask not only on my face but my neck, scalp and another personal area “down under” as a have been struggling with soft tissue infections with my autoimmune therapy Bimzelx.

I have decided to stop the Bimzelx entirely and see where my bloodwork goes as my inflammation biometrics look good and it’s been a source of so much trouble. I gave it an 18 month run and while the results have been positive in my bloodwork the cure may be worse than the disease.

Now I’m laying on my heater PEMF mat from Higher Dose as the red light of the bedroom lulls my circadian rhythm down into the evening hours. I have no idea if it does much but the heat is soothing.

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Biohacking

Day 1912 and Informing Ourselves

Some 20 years ago, before I knew I’d have medical troubles of any length, my college job was working for a medical ethicist who was a physician with a grant to study informed consent.

Now, years later, as I have worked my way through institutional resistance to how I may come to be disabled and generally dismissed as a patient, I come to find that much of the skepticism my mother had as a crunchy hippie is now functionally being proved a quarter century on. These uncomfortable trends drives skepticism in even the most informed minds. And most patients can only ever be expert on their symptoms.

This comes at the end of a crisis of communication about the value of public health and personal responsibility in a community. Many people did not feel that they were given adequate consent and no longer trust anything said by doctors. Would most medical professionals agree they had informed consent? I think most argue they were. I agree.

Now of course we’re all desperately trying to prevent harms here and patients more than ever feel that, as they don’t trust what’s coming to them because we’ve not effectively decoupled population-level information from the individual human behind a given case. Is that informed consent? Yeah as best we can do it.

Now how does research play into all this? I also happen to have the misfortune of having working on the early years of on one of the worst medical misinformation spreaders in all of healthcare. I say this lovingly: it is Gwyneth Paltrow.

Now if you root around Twitter, you will find commentary about how the supplements hawked on Goop and the supplements hawked on various right-wing sites are functionally identical. But she got a lot right because she is a rich well connected white woman with money. So again who is informed and to what degree?

Unfortunately some of the things that are sold as treatments or supplements they sell are real and have proven out. We’re working our way through the science on our gut biome, infection and its links to preventable autoimmune diseases, and any number of other previously heretical paths.

But we’ve really not transformed the way we process our information on what we know and what is actually considered best practices. The gap is very wide. Like a chasm. I am way outside the norms because I fucked myself up believing I wouldn’t be a statistic as it mostly worked for most women.

So I live with issues. But do I think that people have a right to experiment with what we think might be snake oil? Absolutely. Everyone calculates their own risk. Heck Sarno is just one giant placebo doctor on letting go.

We know that some of the avenues of exploration will prove to be placebo effect if they work. And we still somewhat trust things that are actually going to cause harm aren’t really making it into the popular press and mass consumption unless there’s some evidence. I sort of believe that to be true.

More people should feel that they have the right, if they have informed themselves over a period of time as patients, to work around the system if they make no progress despite best efforts and years of work.

There’s just a lot to balance on being informed about your conditions and your capacity to manage your own health that is up to you. I think that generally speaking the paternalistic attitude has not produced superior outcomes.

And the quality of care I get as someone who can pay for health care anywhere in the world, it is galling to me that the gap between what we know and how far we can go in practice is so wide.

So let the guy advertise the doggy cancer vaccine because at least it’s teaching people that we have solutions to more than they know. They can judge risk reward and be a little bit strange. Humans are humans.

You get to decide it based on your own understanding of your own life and you get what you get. I was disabled by my own misjudgment of informed consent on treatments recommended by a COO of a major company who paid to have as a perk to her workforce. Egg freezing was an approved elective procedure that everyone was on board with ten years ago.

I was informed. I consented. I got it wrong. Now let me see if I can fix it in my own manner of choosing. And I won’t trust mere authority next time. Neither celebrity nor pharmaceutical company is to be trusted.

Categories
Biohacking Chronic Disease

Day 1899 and Off To Sleep

I regret to say that after yesterday’s various excitements through my continued ill health; did not leave me with anything for today.

I crawled out of bed for a coffee far too late. Was greeted by marginally better biometrics such I think my Whoop took pity on me by giving me a green.

The trouble with context and personalization? It was only barely better than the reds of the worst that continued into a week of yellows where my resting heart rate and heart rate variability went in the wrong direction.

I largely spent today sleeping because I could t get enough last night. I hope you don’t mind if I go back to my nap as waking up was a challenge.

Categories
Chronic Disease Medical

Day 1896 and Short but Sweet

The weather forecast for western Montana for the next several days is gusty high winds and five feet of snow in the high country so I suspect I’ll have some good down time simply because there’s a chance I won’t even be able to go outside.

I have a dentist’s appointment tomorrow morning, first thing, which I am a little nervous about as I’m not accustomed to having issues with my teeth.

The work I got done a week ago kicked up quite a bit of dust, if you will, and now I am struggling with a high heart rate and a very low heart rate variability. I can’t seem to improve upon the numbers.

If the dentist doesn’t spot anything wrong, then hopefully I can simply get a prescription for fluoride toothpaste and head to my family doctor as long as the weather holds.

I wish I had more to say but the energy I had budgeted for the day has been all used up. I’m not even confident I have the strength to focus on television with a plot line. It is a challenging prospect for me to stay upbeat when I get beaten down by my own body but it’s all I can do and I’ll have to accept it.

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Biohacking Medical

Day 1890 and It Bears Repeating Or Does It?

I can’t say I have fully recovered from pushing myself to my operational limits to do work (which looks a lot like socializing in my line of work) while still recovering from an infection after dental work.

It’s always recovering from an infection these days. I’ve been on some kind of antibiotic or anti-fungal every day since October.

2025 for me was getting an infection and then recovering from an infection on repeat. Ever since I decided to swap my biological injection 15 months ago from Coesyntx to Bimzelx and I think I’ve hit my limit.

It’s just too damn depressing that it’s a constant threat that I’ll have either a soft tissue infection or an abscess or a swollen gland that turns into a staphylococcus colony.

It’s as if I’ve got no skin biome left which is almost certainly true. I think I’d rather have CRP and sed rates and risk other infections than be rotating antibiotic varietals like some kind of junky afraid to develop a dependency.

Except instead of pain pills or lady downers it’s amoxicillin versus doxycycline versus Cipro with the occasional dalliance with a macrolide. I’ve also come to appreciate the benefits of Fluconzole. It’s not great. If you want a quick AI generated overview scan along

  • Beta-lactams: This broad group includes penicillins (e.g., amoxicillin), cephalosporins (e.g., cephalexin), and carbapenems (e.g., meropenem). They work by inhibiting cell wall synthesis.
  • Macrolides: (e.g., azithromycin, erythromycin) These inhibit protein synthesis and are often used for respiratory infections.
  • Tetracyclines: (e.g., doxycycline) Used for a wide range of infections, they inhibit protein synthesis.
  • Fluoroquinolones: (e.g., ciprofloxacin, levofloxacin) Broad-spectrum antibiotics that inhibit DNA synthesis.

My problem is that going back to my old biologic will take three to four months to full dose and it’s not a risk free process. And my full biometric panel is better on Bimzelx so is it really so bad that my resting heart rate is in the upper nineties every other week?

I think it may be time for me to make a pilgrims to the remaining clinics and pretend that I have any remaining institutional trust. Maybe I can vibe code something usual along the way.

I intend to support others on this journey as I’ve been chronically this journey a long time and the times are changing as we bring more artificial intelligence to the inference issues around our biometrics.

Categories
Chronic Disease Startups

Day 1889 and Recovering from Normalcy

I had such a lovely day touching grass (and sand) yesterday. I slowly worked through a 36-48 hours of of talking, walking, strategizing and occasionally reapplying sunscreen (I still got burned a little on my shoulders) with a friend who is preparing for big life and company changes.

These are the activities of normal life that I cherish, but my body seems hardly able to manage the strain this week. Now perhaps these activities are stressful on the mind and soul, but should they really be so physiologically taxing for me?

My Whoop is showing high strain

Now yes I am recovering from some dental work and on antibiotics but shouldn’t I be able to have a calm day that most would consider restorative? The serene peace of sitting on sandy shores should surely outweigh any areas from consequential questions of power, compute, realism and human purpose right?

I have barely been able to get out of bed today and the ten minutes of squats and planks I did to test my capacity spiked my heart rate into the stratosphere.

Which is odd as I woke up with my RHR in the 60s which is much better than usual. I only get into the 60s or 70s consistently when I am on heavy antibiotics.

The two weeks I was on Cipro recovering from surgery this summer my RHR was in the mid sixties so clearly I’ve got something going on with low grade infections.

I struggled mightily to organize my thoughts enough to write even this post. I feel I might even have it in me to go for a walk. Which is encouraging as I missed the sunset. The sunsets are obviously an event when you have a beach or far off horizon to enjoy with then.

Categories
Culture Travel

Day 1871 and Private Terminals

The downside of living in a world where everyone posts all their luxuries, is regular people who spend too much time on Instagram worrying about things that wouldn’t add much to their lives. Instagram breeds discontentment for everyone.

My husband grew up ten minutes from a global international airport hub, and as such has unrealistic expectations of how quickly one can get from place A to B and how many legs a trip should have.

He longs for the most efficient trips complete with special passes, lines and hopefully a plane dedicated to just his crew and their final destination. I doubt I’ll manage to buy it for him but if one of my better seed investments pans out I’d acquire a gulfstream for his buddies to fly.

I’ll admit I’ve been a little spoiled as well, as by the time my family could afford to fly more regularly the old Stapleton airport had been replaced by a global United hub in Denver International Airport. A spookier more haunted airport there has never been (mind the killer blue Mustang and Masonic symbolism) but it flys connections everywhere.

Now we are in the spokes and farther from hubs. Flying can be a challenge for me as in the past fewer people abused disability requests like wheelchairs.

My ankylosing spondylitis has good days and bad days so on occasion I wish I had help with heavy bags, long lines and lugging stuff around.

Wheelchair access has alas become just another scam people run to board first, so I can no longer guarantee that I’ll even make my airplane given the lines and lines of maybe crippled as if you log disabled you often can’t even get your boarding pass from a kiosk. You have doomed yourself to the thousand person line.

Alas become used to popping Advil, throwing elbows and working my way to the front of the line filled with folks who know little of flying etiquette, status boarding times and the rest. If I can’t beat back a Balkan auntie seated in the back of the plane for my own seat at 2C then what sort of world traveler am I? I claim space but I don’t like it.

Yet as I stomp around smaller spoke airports I’ve learned it’s not too expensive to get a priority pass to private terminals. Groan I know.

In a few spots, it’s less than fifty bucks to skip check in with your airline, avoid security and passport checks with the whole airport by doing it in these terminals and they will drive you in a van to board the airplane first.

That means no more fighting for prime position in line to get prime position to board to get prime position on the bus to race up the staircase to the airplane before someone else blocks you.

I can’t imagine a better use of the time and money frankly. I could easily have arrived much later but I wasn’t sure how easy it would or wouldn’t be.

The demographic feels a bit petty oligarch with a cigar lounge and exotic alcohol but I’m just happy I haven’t had to do any heavy lifting for the moment. My bags are handled. I have food and water.

Categories
Travel

Day 1870 and Cutting Down On Packing Time

I am a very thorough, well honed and time tested, and Karen hardened packing methodology.

I have a little bit of childhood anxiety around packing for having moved around a lot that has alas never left me. Many people having anxiety about flying so at least it is a bit relatable but I don’t know if packing anxiety is as common.

For me it’s not about being in the air but rather leaving behind an established base for parts unknown. Will I be able to find medicine for issue that arise or soap that won’t trigger eczema? What if I need to appear at an event requiring a dress & makeup? What if I need to walk for two miles with all those things?

Every time I pack I go through the same routine and I use the same bags with the same labeling system to manage all the permutations I might encounter. And it is a science.

I have a small pajama bag I carry in my backpack in case of an unexpected overnight or long delay. I carry small clear vanity case to clean & groom myself with full allergy protocols that passes even the crankiest Heathrow checkpoint. I am prepared.

I carry on my person a a small pill bag with every detail labeled that can handled medical incidents big and small along with my first responder certificate. If you have an issue on an airplane you want to be seated next to me.

From there in my carry on suitcase I label the packing cubes with every item I bring, from underwear to wrap dress and ballet flats. Everything that is packed in my larger Tumi that gets checked is also labeled and I place an itinerary on top as I find my bags opened more frequently than seems reasonable.

There are no questions from the TSA or the most belligerent customs agent that won’t be immediately cleared up with minor inspection. Now with artificial intelligence I can translate my labels on the fly into any language.

Despite this clarity and organization, I admit I’ve had a few amusing incidents. Once through Heathrow I unsettled a British Airways agent with my fiber and protein powder baggies. Because clearly middle aged woman would smuggle in a quart sized baggie of cocaine in her purse.

I really wish with all the travel I do and my very strict system that this would all somehow take a little bit less time than it does. I generally allow myself two days to pack as I like to check and double check as it’s an iron law that things will be forgotten. And Montana is remote enough that if I forget a fancy serum or a favored sweater I won’t get a replacement easily. We only just got a Sephora this year.

I am however headed for a large American city that has absolutely everything I could possibly want in short order. So as I leave behind a European home base where I do keep things on hand (I didn’t always but extended family has been kind to me) I feel much less pressure this time. And still somehow I will allow myself to let it take more time than I’d prefer.