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Medical Travel

Day 529 and Close My Body Now

Menstruation is mostly an exercise in pressure changes. Cramping and bloating make for a good reminder that we are ugly bags of mostly water. Or if you prefer meet popsicles. But I don’t recommend flying while menstruating as the pressure changes, aka jet belly, that wreck havoc on your lower intestines don’t really need the extra help.

I’ve got a theory that shorter flights are worse for jet belly because all the fluids and gases that are rumbling about inside you have less time to adjust. If you’ve never noticed that your lower half is bloated and rumbling after a flight, well, lucky for you. But I’m pretty sure you are also lying.

Our flight got put in a holding pattern over Denver as we waited for a thunderstorm to clear out. I could not have asked for a better metaphor as my cramps kicked into high gear. My chatty seat mate kept trying to engage in conversation and all I could think was I’ve got to shut my body down.

And then as if being crampy and bloody wasn’t embarrassing enough I started humming a twenty year old techno tune from Madonna. Yes, I remember the lyrics to her James Bond song.

I’m gonna destroy my ego

I’m gonna close my body now

This turned into a mantra as the pain and discomfort threatened to kick my stress responses into a cortisol spiral. I began a series of breathing exercises and kicked myself into a meditation so deep my poor husband couldn’t reach me. Madonna might have had a point. Ego destruction and closing down your body has a place during intense pain and discomfort. It only has to hurt if you let it.

Categories
Biohacking Medical

Day 522 and Tracker Jacker

I started an experiment with one of my tracking apps called Gyroscope at the beginning of the year. I took pictures of every single meal. For $150 they analyzed all of my meals assigned me a virtual coach to help me improve my total health scores across all categories including food, exercise, sleep and mood. A few days ago my husband physically took my phone away from me and canceled it. The experiment was a failure and it was it Gyroscope’s fault.

Personalized healthcare is a bit of a noble lie. They do give you advice that is somewhat personalized to you as long as your body is within the baseline of what we recognize as healthy. If you are within one standard deviation of the mean then it works great. These tools improve your health. Just remember most of our baseline data is from healthy, young, white, men. This isn’t a woke thing. That’s just the population with the most data.

It’s hard to give someone like me health advice. The basics are designed for otherwise healthy people that need to improve their activity, weight, sleep, and basic nutrition so they don’t become sick in the future. Maybe their biggest issue is being a bit overweight and sedentary. Most people do in fact need to move more and eat less and go to sleep on time. Chronically ill people, or those coping with an acute viral infection, still need to eat good nutrition but beyond the basics it gets more complex what we should recommend.

The coaches at any health app I’ve ever used have kept trying to give perfectly sensible guidance about activity and nutrition quality and lowering stress levels. I am sadly an extremely weird edge case so shit like walk more can actually be bad for me sometimes. Sometimes doing absolutely nothing is actually what someone with my medical history needs. And tracker apps have a tendency to go berserk when I need two or three weeks of bed rest. They go full red alert trying to make me get some exercise when my doctors are tell me any exertion is bad.

The straw that broke the camels back on the $150 a month experiment was getting influenza in May. It completely imploded all of my metrics. As a serious viral infection tends to do. I couldn’t get in any steps as I was basically bedridden. My food intake got weird as I was in Montana with friends and house hunting when I got sick. I had one perfect week of high protein and vegetables and then as I got sicker and sicker it was anything I could be coaxed into eating. There were two meals of milkshakes from Five Guys and that was considered a lucky break. Coughing and exhaustion sometimes means sipping a high calorie frozen dairy product through a straw is as good as it’s going to get.

As my metrics got worse from the flu and tracking food become a pointless exercise, I gave up on even trying to walk my very nice coach through it. There was nothing to be done on assigning me any health activities for weeks. I couldn’t exercise. Meditation did nothing to improve core metrics because I was fighting a massive infection. My sleep was shit because again fighting an infection. My nutrition was hit or miss as my throat hurt and my stomach struggled with new medications.

The renewal snuck up on me. I had wanted to say good bye to the coach. To let her know she tried. To reassure the Gyroscope teammates that my failures didn’t say much about them and how they coached people into healthier behaviors.

I’m a woman with overlapping chronic conditions that got an acute infection and there was no real way to come back from it in a short period of time. But I was still so exhausted and couldn’t bring asking Gyroscope for a pause (a sick break for fitness apps would be a killer functionality though). But my husband remembered the auto-renew date. So he just canceled the entire thing. Boom gone. Fuck off.

I opened the app for the first time in weeks today to at least turn back on the basic tracking so I didn’t lose any data history.

I like how the app does data visualization. I have no clue if I can track nutrition on the base level of product on Gyroscope. Whoever does their pricing tiers has changed it so much I’ve lost track. In the past I found it impossible to input nutrition into their tracker. It was amazing to have the app do it automatically. I relied on their team doing the macros not because I can’t do it myself but because I couldn’t figure out how to physically input it into the app. So I’m a little sad about that. But not sad enough to pay $150.

Categories
Medical

Day 503 and Halftime

I really thought I’d kicked the flu this Monday. I drove back from Montana and I was feeling amazing about my life and my decisions. And then yesterday I just straight up crashed back into symptoms again.

I managed to both write and correctly tag and post while I was riding a modest fever high. Which is pretty fantastic. That’s how you know your habits are good. I was able to maintain my writing schedule on the strength of the rhythm alone. My husband who got tagged in yesterday’s post on Twitter was impressed that I was actually coherent. Practice really does make perfect.

I’m a bit annoyed that the flu had a halftime show. Now I’m fighting out the second half of the game and I probably didn’t take advantage of the respite of having a decent day or two. Now I’m back in the storm, to use an entirely different metaphor, and I’m upset the eye has passed.

Categories
Medical

Day 502 and Fever

I had a late lunch today. Maybe at 3pm or so. I took cough syrup with it. It’s now 7:13 and I’ve been asleep with a fever tossing and turning the entire time. I vaguely recall my husband coming into the bedroom to tell me he was going to tennis. I couldn’t wake up enough to tell him I was sick and needed help getting situated for the evening.

My best case scenario is I’ll crawl out of bed to the bathroom drug cabinet for NyQuil. I don’t think I can make it downstairs for more water though. I’ll have to drink from the tap. I’m finding myself wondering how much longer Alex will be out. One hour? Two hours? How long is tennis? The shades calendar isn’t on my phone. I’d need my laptop to check and I have no idea where it is as I’ve not unpacked from Montana. My Whoop needs a charge. That’s at the edge of my fever brain. Maybe I can wait till he’s home to address that as well. What’s one night without data right?

I keep trying to access parts of my mind about what I need for a stable night I can sleep through. Do I have it? Can I wait? Will I be able to wake up enough when Alex is home to get the help I need? Can I push through with what I have now. I actually had no idea I could still spike a fever this far into the infection. And I bet when I read this post without the fever high it will make even less sense than it does now.

Categories
Emotional Work Medical

Day 496 and Pardon the Interruption

I’ve been on quite a streak of processing as I’ve written through the emotional rollercoaster of a potential move to Montana. We found a house that seemed absolutely perfect but had to work through our feelings on the matter. We put an offer on the house and as of tonight we are the leading offer and negotiating the legal deal points.

I am however really sick. Alex tested positive for Influenza A last week and while I briefly felt under the weather, I thought my hyperactive immune system had beaten it. Alas the data suggests I very much have the flu and I’ve done my famous “double dip.” This happens to me fairly regularly where it looks like I’ve beaten something abnormally quickly but if I am stressed or not well rested the latent infection doesn’t quite clear and a week later it roars back full force.

Welltory reading showing high stress, los energy and my health at risk
Whoop reading showing a dangerously low blood oxygen count and an elevated respiratory rate this morning

Given my current status I am going to take a bunch of NyQuil and stay in bed and send my apologies to anyone who might need me tonight as I’m clearly a bit addled in the head.

Categories
Medical

Day 489 and Day Dreams

I had a dream during the day today. I mean the rapid eye movement kind not the fantasyland imagination. I had laid down to rest my eyes while my migraine medication worked it’s way into my system.

Generally I don’t fall asleep in the middle of the day. This is doubly true if I’m beating back a migraine. Triply so if it’s a particularly bad one. This migraine was so bad I needed nausea medication as well. I frantically texted my husband in the other room to help me look as I couldn’t locate my medications as keeping my eyes open triggered cascades of lightning flashes behind my eyes and nausea so bad I was afraid I’d lose the contents of my stomach.

I put on noise canceling headphones and a face mask and passed out. I woke into a dreamscape city that resembles the west village in New York. I was being instructed by a coach of some sort to forgive someone. Maybe it was myself. Maybe it was a cofounder of a past startup. The texture of the city was busy. Tourists were everywhere blocking the sidewalks. I recall a conversation about the end of the pandemic. Perhaps everyone was out celebrating. There were posters for movies or shows on every available service. I distinctly remember one in front of a fry shop that had media quotes promoting Billy on the Street combined with Family Guy characters. I’ve never seen Billy Eichner’s television show.

I woke back up nearly four hours after having originally gone to lay down. I felt dazed. I had the slightly unsettled feeling one gets upon waking in a bed that is not one’s own. I was disoriented and dizzy even laying down flat. My nausea still has not disappeared entirely. But the migraine had mostly passed.

Categories
Biohacking Medical

Day 483 and Medical Logistics

As you probably know, everything about the American medical system is a pain in the ass. I was expecting a delivery last night of a medicine that needs to be refrigerated. I went to bed assuming it never came. I woke up this morning to find it has been left out outside all night.

A $5000 dollar dose biologics injection (that’s only $150 in Europe) got left at door I don’t use without a knock. Thank god it didn’t get porch pirated as I cannot afford to replace it. I discovered the medicine this morning when going out for an espresso as it was left in dry ice by the basement door. Just a little chaos for the start of a day filled with other medical logistics.

Today is the day I pick up my prescription refills for the month. I have to do it once a month instead of a convenient quarterly by post situation as I take several controlled substances of which I’m not allowed to have more than a 30 day supply. It’s a real pain in the ass to travel for this reason as it has to be organized around when my insurance and the government will allow me to do so. If I want to be on the road for six weeks or go to Europe for more than a month I’m shit out of luck.

I take a lot of prescriptions to manage my chronic illness. I wish I didn’t need any of them. If I’m honest I put a lot of effort into wellness and lifestyle as part of a long term effort to ween off the pharmaceuticals like my biologic anti-inflammatory injections. I don’t want to be left for dead in a crisis as I’ve got no illusions that we will protect the sick and vulnerable. I protect myself.

I have to do the pharmacy dance now whether I like it or not. I have to take half a day to make sure everything comes in on the same day and in time for any mitigating factors like travel. I maintain a spreadsheet to keep it all organized. I have to use up valuable energy and focus on something that your average Canadian or German would find comically foreign. And that’s just the way it is and probably will be for sometime.

Categories
Medical Politics

Day 475 and 4/20

Last year on April 20th aka 4/20 aka the day America celebrates weed culture, I wrote an post on using medical marijuana for my ankylosing spondylitis. It’s a thorough look at how I incorporated THC & CBD into a pain control regimen for an inflammatory autoimmune disease. I’ll recap some of it here as my views haven’t changed at all in the intervening year.

As a libertarian I’m pro-legalization but I likely wouldn’t have chosen to use THC recreationally except that it happens to be a drug that has demonstrated benefits for my condition and is comparatively less dangerous than other pharmaceuticals I am also proscribed (namely opioids and high dose NSAIDS). For some context, despite being a native Coloradan I had never smoked weed till this year. As a kid it just didn’t seem appealing (that’s what hippie boomers do), and to be candid as I got older I didn’t love the idea of tying a health need to something that wasn’t legal everywhere.

I spent months testing everything from bud and regular joints to elaborate butter and shatter concoctions in an expensive Pax vape. None of it achieved the desired effect which was pain mitigation and minimal head highs. It was expensive and demoralizing. It was hard to manage dosing and consistency and I was unsure if it would remain a part of my medical regimen. I wasn’t sure weed was ready for prime time but I did feel it was important to document it all both for my own biohacking purposes but in case it could help others.

After all of that experimenting, I settled into regularly using patches. It’s one of the least celebrated formats and, because that’s how it works, the last format I tried before settled into a routine. I use a brand called Mary’s Medicinals that makes an excellent 50-50 THC to CBD blend. It is completely reliable on dosing and effect. It has little to no head high. And it lasts for eight to nine hours. Basically as close as I can get to a pharmaceutical. Turns out I wasn’t kidding when I said I really was in it for the pain relief.

I genuinely hope that THC continues to cement its place in American culture and medicine. It’s a cheap easy and effective drug that replaces a lot of expensive and potentially dangerous pharmaceuticals. Of course we’d have powerful interests working to ban that. It’s a a national shame and I’m glad Americans have fought back. I’d rather weed replace alcohol and tobacco. Why get drunk and wake up feeling shitty when you can get calmly high and feel better in the morning. But it’s a long path and sadly it’s still viewed negatively by some. I hope to do my part on 4/20 to encourage folks to see it’s benefits.

Categories
Chronic Disease Medical Travel

Day 437 and A Mood

I’ve been struggling with allergies ever since I arrived in Frankfurt last week. The stress of travel and the constant itching affect my mood more than I’d like.

It’s a weird situation if I’m honest as I’m so happy to be traveling and on my own after two years or being in the same place and with the same person. I love my husband and I love my home but I’m sure everyone can relate at the end of the pandemic for the need to be alone.

My mood has largely been buoyant except for the constant low level misery that is these damn allergies. My eyes water. The skin around them is red and raw. My skin keeps finding new intermittent patterns to express hives and eczema. And I’ve built up quite a tolerance to Benadryl.

The allergies stress me out and then my spinal pain worsens and then suddenly I’ll find myself in just a miserable sad mood. I’m grateful I can write it all down so I can get the mood out. I just want to be comfortable in my own skin and smiling again.

Categories
Medical Travel

Day 428 and Allergies

I’m staying in an Airbnb while I’m in Europe. I genuinely love the application and it’s community. I was an early adopter of Airbnb. Thanks to Airbnb I saved 60,000 dollars in one year. That cushion allowed me to quit a corporate job and pursue a startup without any anxiety.

My love for the application is pretty deep. It’s responsible for my marriage in some ways. I would only rent if I had another place to stay that allowed me to turn a profit. That usually meant I would rent while I traveled or if a friend has a place to crash. Alex was fascinated by my side hustle immediately. We’d only been on a couple dates when he offered to let me stay in his apartment while he traveled if we split the profits from my Airbnb. Naturally I said yes. I never moved out. And yes now we are married.

So yeah I really love Airbnb. But you do need to be aware of the community’s idiosyncratic norms. You are staying in someone’s home. That’s part of the charm. But also can can occasionally turn out in unexpected ways.

Since I arrived I’d been struggling with allergies. I broke out in hives. I had to figure out acquiring hydrocortisone in a foreign language. I was popping Benadryl like candy so I could barely stay awake. I was getting a little desperate to be honest. So I went on a long walk. Everything cleared up. I returned to the apartment and immediately started breaking out in hives again.

I texted my host to ask if he has any ideas. It turns out the host of my Airbnb loves scented candles. And he’s got great taste. The apartment has tons of candles and diffusers. But he’d put them into a cabinet so I didn’t know they were there. Alas I am extremely allergic to the chemicals that are often used in scented candles. Limonene in particular. So my body was going haywire over these candles but I had no idea they were there.

Thankfully we figured it out and moved them outside. But it’s a good reminder that context matters. At an Airbnb you are in a home furnished by a person with different needs and tolerances from you. And that’s ok. We figured it out. But me being upfront about my allergies from the start might have saved me a day of misery. Lesson learned.