Tag: Chronic Disease

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Aesthetics Medical

Day 1882 and Crowning Glory

I have always been fastidious when it comes to dental hygiene. I floss twice a day, I brush morning and night. I always carry dental picks for good measure.

I didn’t earn enough for steady dental care in my younger years so I knew my habits would have to carry me. But I did have a few tricks that helped me manage in my twenties. I would volunteer my time as a patient at the NYU Dental Clinic.

Not only were you not charged for procedures but you’d learn a lot as students went through clinical hours and professors lectured using your mouth as the live lessons.

I thought this was a pretty good trade for low stakes maintenance work like cleaning but I let them do more involved work including a filling on one of my molars which I’d cracked.

Fifteen years later that the crack which has been filled needed a little maintenance. A another crack had formed and it was looking a little unaesthetic. I was experiencing some dull pain so I decided to get it looked at. And it’s a good thing I did.

For a brief moment there was concern that the nerve in the tooth had died. I should have felt more pain than I did. But the cold test cleared it up. I don’t think I’m healthy enough to manage a tooth being pulled and replaced with my immune suppression medicine.

As I explained the filling’s provenience and just how old it was, it became clear that it needs to be redone. A bit of it had edge over to the back molar I’ll get two teeth filled.

A filling is a treatment where a dentist removes decayed or damaged tooth structure (sometimes it’s a cavity others a crack ) and replaces it with a material (like composite “white” resin, metal amalgam, or other restorations) to restore shape, strength, and function while preventing further decay.

It’s not a crown so the title is a misnomer but it is a bit glorious that one can get care from students and have it hold up for so many years. It’s always something in the maintenance and care of one’s body and I tend to prepare for the worst.

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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.

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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.

Categories
Chronic Disease

Day 1863 and Head Above Water

Yesterday I wrote that I had no gas in the tank. Today is not much better. I am barely keeping my head above the proverbial water line. I finished a major purchase which I thought would give me respite for a few days.

Alas changes in destination, an emergency dental appointment for a family member, and the promise of rest was more like a promise of fretful semi-consciousness.

After days of rushing around seem to have swept me off my feet and into bed I still am not quite rested.

I thought I was mended yesterday but it seems as if I’m on the second day of exaggerated sleeping patterns with long arcs of sleep in the wrong places and times. Add in a bit of overheating on top of it and something feels off.

It’s not unusual for me to absorb major changes and shifts throughout their unfolding via some migraine induced osmotic pressure. I feel the animal spirits and global vibes push in past my physical limits and I shut down. I hope I’ll reboot soon.

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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
Biohacking Medical Travel

Day 1846 and Doctor’s Orders

I have had a lot of experience with doctors over the last few years. A chronic autoimmune condition isn’t the sort of illness that gets “better” like a virus. It can only be managed.

I have come up with endless ways of collaborating with people who far too often believe they are more informed, powerful and intelligent than me.

Sometimes they are even right about that perception. It’s a frustrating fact of life that doctors value their status occasionally more than their patients.

Today I went to a tourist hospital renowned for its extensive offerings and professionalism. My usual interpreter (it’s in a foreign country as many nations from Mexico to Turkey to South Korea serve American patients) had a number of procedures and visits organized for me. I felt confident I’d learn a lot and maybe find new pathways to healthcare management.

I happened to have an aesthetic elective treatment first. A plastic surgeon met with me to refresh some Botox. That seemed excessive given a nurse does my light work back in Montana but why not get a professional opinion while you have the chance.

I’d intended to spend the afternoon at the hospital doing a number of more productive activities than smoothing my fine lines. I’d set up rheumatology and immunology lines of questioning and I was excited to get some holistic work done including ozone and an IV infusion of vitamins and minerals.

Alas I was stopped in my tracks by a physician who simply would not approve the IV I had set up, the ozone work, nor would she approve the alternatives I suggested (an intramuscular B vitamin shot). I made my case with the interpreter and my AI.

The doctor wouldn’t budge. She even obfuscated suggesting that glutathione was illegal though backed down when it turned out to be a malpractice issue related to compounding pharmacies.

I very much wanted to buff up my immune system, especially having chosen something elective to go first, and I could not make progress. It shut down my whole afternoon. All that was left was tests and waiting.

There was no order the doctor was willing to give for short term immune improvements unless I committed to five weeks of procedures which given it was a tourist hospital seemed a little ironic.

I am demoralized but doctors will be doctors. I never seem to manage to convince them when I really need it. Doctor’s orders are not always for the benefit of the patient. Maybe no one wanted a woman sitting around hooked up to a vitamin infusion. Who knows. I probably would have skipped the Botox though.

Categories
Aesthetics Biohacking Travel

Day 1845 and Lake Effects

I feel a ray of optimism emerging like a bulb who mistimes a false spring in late winter. I am in the dead of winter and I have the first glimmers of light.

“How you do one thing is how you do everything” is an aphorism about character that would take a natural born contrarian to engage.

I made a series of small decisions to keep myself still and make use of resources and skill clusters so I didn’t have to stress myself for a timeline that I didn’t make.

I took a few days to back off into medical tourism and longevity experiments. Nothing fancy or even novel. I wanted good sleep and a classic NAD+, Myers Cocktail, essential trace minerala, glutathione, Alpha-lipoic acid. Just good clean anti-inflammatory fun.

I want the good decisions about sleep habits and nutritional choices (sea bass, shaved vegetable salad, prawns and artichokes), the good exercise decisions (mobility and V02 max if I can’t push muscle too hard without impacting my my nervous system’s vagal tone).

I feel so lucky that this is a choice I can make. I need to be in fighting shape or the compounding choices of my health will have the wrong trend line. I want to see our future.

I am breathing slowly and watching a kind of lake effect whip up the water in the pool outside giving a fluid dynamics show to anyone who loves the movement of water and wind. That makes me want to live in our present.

Categories
Aesthetics Biohacking

Day 1843 and Does Enya Listen to Herself In The Bath?

As a woo child of the New Age 90’s era of music, I love listening to Enya in the bathtub. Pure Moods and a hippie mother set a tone for bathing for the remainder of my life.

Alas in Montana we do not have a bathtub in any of our bathrooms. We have a hot tub but the chemicals bother my skin so I only get to enjoy a bathtub when I’m traveling.

And you better believe I have Enya downloaded on Spotify for those occasions even though I’m certain at some point we probably owned all of her music on tape and CD.

While I love the classics (who doesn’t want to sail away?) I had Wild Child come up as I was soaking up magnesium yesterday. Which is not a bad checklist for becoming present in the moment.

Ever close your eyes
Ever stop and listen
Ever feel alive
And you’ve nothing missing
You don’t need a reason
Let the day go on and on

Let the rain fall down
Everywhere around you
Give into it now
Let the day surround you
You don’t need a reason
Let the rain go on and on

What a day
What a day to take to
What a way
What a way
To make it through
What a day
What a day to take to
A wild child – Enya

I’m no wild child but I don’t need a reason to enjoy a bath or a day. Rest up and rejuvenate.

Categories
Chronic Disease Emotional Work Travel

Day 1841 and Lapping It Up

As we do our yearly family planning retreat (such as startup couple cliche) I’ve been balancing the stress of the wider chaos of the moment and my body’s turmoil.

It’s contrasted with the calm and removed relaxation of a hotel with excellent hospitality. The soft attention to detail is a blessing on a body that is not quite up to factory standards.

As we go over goals, budgets, allocations and timelines the stress is buffered by being able to take breaks to walk alongside the waterfront or swim laps in the quiet infinity pool.

That might not seem like a triumph, if you don’t know me it sounds like a stupid humble brag about my very fine life. But I’ve spent years unable to wear a bathing suit at all because of the pain cause by Lycra’s pressure on inflamed tendons and tissues. Three years ago I wrote about the bathing suit I’d never work

And today I was able to dive in and do the butterfly and the backstroke as if it were the kind of workout I do all the time. The possibility of improvement is here.

One of the planning goals is to see how far we can take my health with nutrition, sleep, physical therapy and other modalities that rely on movement and self healing over the many intense drugs I’ve needed to calm the flares. I almost believe it’s possible. And I sure plan to try.

Categories
Biohacking Chronic Disease

Day 1830 and Itchy Twitchy Bitchy

It’s one of life’s truisms that we may wish for prestige, power and money, but none matter without your health.

“The first wealth is health” by Ralph Waldo Emerson.”

I don’t think it is self flattering to admit I have got some amount of respect, influence and capital. And yet every spare dollar and moment I have I spend trying to improve my health.

The other types of wealth I have don’t matter if I’m in too much pain to think or I am so regularly infected that my resting heart rate is in the mid nineties.

Yesterday I started getting what I call itchy and twitchy. It’s often the first sign of an infection that has broken through an altered window of immunity.

My entire body will itchy. Sometimes it will be accompanied by a rash like eczema. If the rash is bad enough to be opened through itching I can easily get a bad infection. The discomfort of all that makes me twitchy from the anxiety of it all.

I suspect I am itchy twitchy at the moment as I am in a city with polluted air from major construction and high air mold counts from the winter rains. It makes me want to hit the road immediately for dryer climates but I’ll take prednisone first.

That should make me very pleasant. Anyone who has taken the steroid knows it’s a joke as the drug makes everyone who takes it feel a bit crazy. And you get fat and moon faced for added insult to injury. So apologies in advance if I’m going to be a bit bitchy.