Tag: Chronic Disease

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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
Chronic Disease Startups

476 and Temptation

When I am feeling healthy I love to over do it. Most days I feel basically fine. Which is a significant improvement over even two years ago. I was living a little low. But maybe once or twice a week now I will just feel terrific.

Today is one of those days. I woke up early after a restorative night of sleep. I didn’t miss anything on my extensive wellness regimen. I was just nailing the day.

The sad part about doing wellness because you have to for a chronic disease is that you aren’t even ever hotter for it. Healthy women be doing yoga & taking supplements and practicing wellness and it’s a fucking Instagram campaign. I do all that shit and at the end I’m “ok.” It’s actually pretty demoralizing. I engage in flawless yuppie next generation wellness because it’s actually keeping me alive.

With this context it’s clear that I resent having to take good care of myself. It feels like a burden. So when I have a really good day. When I’m just energetic and focused and, yes moisturized and thriving, I’m also plotting how to undermine myself.

Because I felt terrific I just hand to indulge in it I took a bunch of calls and did a bunch of portfolio work. I went for an hour long creekside walk to discuss some communication strategy with Alex. I was vibing. Until I wasn’t. I crossed some little threshold and realized I needed to pull back the energy expenditure. I recognized I have given into temptation this time.

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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.

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Chronic Disease

Day 472 and Missing Out

I never had headaches in my twenties. Migraines were a cultural phenomenon I was aware of it never experienced. After I did fertility treatments about four years ago my body went though a number of changes for the worse. I developed an inflammatory condition. And I became acquainted with migraines.

My migraines are the light and sound sensitive type. They leave me nauseous enough I have a prescription just for that. I’ve tried a number of treatments for the migraines prophylactically, but only Imitrax really helps once it starts. If I’m lucky I can turn one around in 3-4 hours with medication and a cold dark room.

Today wasn’t a day where I could turn it around fast enough. And I feel sad and alone and depressed about it. I was supposed to meet friends for a nice meal to celebrate with them and I’m missing it because I couldn’t control the migraine fast enough. Alex my husband made it to dinner with our friends but but alas at home in a dark room waiting for my Imitrax to kick in.

I debated if I could force myself into showing up but it was decided the amount of pharmaceuticals required wasn’t passing a cost benefit analysis. I tried to make a case for it saying if I just tossed enough pain medicine at the migraine maybe I could do it. But the rational vote from Alex was a veto. And he’s right if it takes an opioid to get me out the door that’s not something I can justify for a social event.

The irony is I actually dislike fancy dinners out. I find them to be exhausting. Having to sit on uncomfortable chairs and socialize for two hours is very expensive energetically for me. It probably takes a day to recover from the energy expenditure and I often have to up the doses of my stabilizing medications. I tend not to say yes to them as it’s expensive for me and I don’t enjoy them.

So I don’t know why I’m so upset that I’m missing this dinner. But I am so upset. Maybe it’s because I’ve had months of stability without any issue. When I said yes let’s go I expected to be fine. The last time I recall having a major crash was in early February. Since then I’ve flown internationally, lived on my own, and made it to a crypto conference in Miami with little incident. So maybe I was due for a bit of a crash. Maybe it’s just inevitable that if you push you need to rest.

But I feel miserable, inadequate and guilty about it. Like I should have tried harder. Should have taken more drugs. Or at very least been more upfront that sometimes my body is unpredictable and I find it challenging to have be “on” and in public for social things that aren’t strictly speaking crucial. But now do you tell beloved friends that they aren’t crucial? You can’t really. I just have to hope I can do it. And mostly I can. But not today. Today I couldn’t.

I feel like maybe I owed my friends a performance. I can perform in even dire circumstances. I never miss a dinner or event or appearance at which I’m required professionally. But I don’t hold myself to that stand personally. Sometimes things happen and I just can’t do it and I have to let my body dictate my schedule.

That reality makes me feel isolated and alone. Because I can’t make the same commitments as regular people to socialize and enjoy normal things. There is always the risk that I’ll have a bad day. And I save my energy for work because I have to. So that means I don’t get to have a normal social life like other people. I don’t usually mind but today I do. Today I’m missing out.

Categories
Biohacking Chronic Disease

Day 463 and Caretaking

My husband has a a weak immune system. He used to get colds once a month or whenever he would travel. I, on the other hand, have a wildly overactive immune system. I never get colds.

His immune system doesn’t fight shit off well, whereas mine seemingly never ever stops reacting. I have an auto-immune disorder which is marginally worse than getting colds so on balance Alex does more caretaking of me than I do of him. But it wasn’t always that way.

I used to take care of his regular colds when we first got together. When he married me and we lived together, he slowly absorbed my overly active immune system, eventually cutting down on his colds to a couple times a year. And yes this is weirdly a thing that happens. Your partner affects your gut biome. My health sadly got kinda worse over the course of our relationship. I doubt Alex’s shitty immune response made my life any worse (if anything I would be thrilled for mine to chill out and I take drugs to subdue it) but arguably him getting my overly active immune system has done wonders for him.

I stopped being a caretaker for him. He became a caretaker for me. It was an interesting transition I didn’t really clock at the time. Alex was used to constantly being sick for years but through exposure to me he kinda forgot how much it sucks. This was further exacerbated when the pandemic hit and we stopped being exposed basically any infections.

Alex went two years without a cold. It was miraculous! Alex really enjoys his identity as a health person. Hell he thrived as an active Colorado outdoorsman in a way he never did as an indoor New Yorker. But travel and life is rebooting and it would seem Alex’s old weak immune system is so out of practice it doesn’t do well with crowds and travel and public appearances. We’ve been in Miami less than a week and he’s sick as a dog. Thankfully it’s not Covid. But guess who got to remember what it was like to be a caretaker again? Yeah, I’m responsible for Theraflu and nose spray. I didn’t do any of the conference I’d planned for the day and had to cancel on a bunch of plans but honestly it’s not so bad. Caretaking is an act of love after all.

Categories
Travel

Day 458 and Jet-Set

I forgot what a pain in the ass it is to be on the road. I had three days back in Colorado after my trip to Frankfurt before I found myself repacking my suitcases to head to Miami. I probably shouldn’t have bothered unpacking in the first place.

I had a whirlwind of doctor appointments, injections, pharmacy runs and visits to various health care practitioners in the three days. Any kind of chronic health condition is a bit of a bad bed fellow with travel. Especially if you have medications that are controlled or require refrigeration. I’ve got both. So I timed my sojourn in Colorado to align with those pick ups and injections.

But that left me precious little time for other daily life type activities. I managed to sneak in a pedicure yesterday and it felt practically revelatory. But I’ve got so many other things to catch up that I’ve got no choice but to find a way to maintain normal life while on the road.

I have a round of blood work I need to get done before my next round of doctor appointments next week. Maybe I can get them down in Miami? They probably have quest labs. Doing a fasting lipid panel in the land of retirees seems kind of appropriate.

And while this may sound kind of stupid I really need a haircut. I just a point where it just can’t be put off any longer. It just started to look rough. So why not get it done in South Beach? It isn’t as if I’ve got a stylist in Boulder I love.

The muscles that come with life on the road are surely coming back if I’m considering things like blood work and haircuts. It isn’t the most glamorous part of being “jet set” but it sure as fuck is the most realistic. Travel has its own glamour and romance but you are never as far from the reality of your own life as you think. And maybe that’s a good thing.

Categories
Emotional Work

Day 457 and Pedicure

I did something today I haven’t done in two years. I got my nails done. And it felt so luxurious and yet also somehow normal. This regular act of grooming had once been a staple self care activity but today felt transformed into a ritual of joy.

I feel free and lucky in this moment. Getting a pedicure done means I have someplace to be where someone will see me. It means I am healthy enough to be going somewhere. It means I have a desire to be somewhere. All this cascading luck mixed to show me that my life was ok. I felt so much gratitude and self love in that moment. I am ok. The ok-ness of the universe in an act.

I know it sounds heady and existential and also a bit ridiculous as I elevate the act of a pedicure. But truly I feel so good about where I am in life that I can get my toes painted coral.

Also it’d worth noting that less glamorously cutting my toenails is hard for me to do on my own because of my spondylitis. So a necessity and a luxury in its own physical way. It is a quality of life improvement. So I’m grateful that this is where I am. May we all get little joys of normal in this chaotic world.

Categories
Chronicle

Day 449 and Lost Time

I lost some time this week. I was living on someone else’s schedule and it cascaded into a wash of hours where I felt like I was completely out of sync with the wider world as I struggled to get back in my own time.

I’m not at my best when I have to push myself to live on other people’s time. Everything shrunk down to my bedroom and my body and my own myopia about righting my sense of reality. I was in a lot of physical pain which pushed me mentally as well.

I started to feel genuinely better and on track around 5pm in Frankfurt. Technically that meant I still had a half day in California to work. But I’d lost the will to push. I needed to regroup. I am telling myself that it’s ok because it’s not as if I work a standard 9-5 job. I can take the weekend to find my way back to the timeline. And if I’m honest some of my best work gets done on Saturday night.

Categories
Emotional Work

Day 448 and Disappointment

I’m feeling disappointed in myself. I want to shake the feeling as I’ve done nothing wrong that warrants punishment. But the feeling of disappointment is lingering which is a double cruelty I’m perpetuating on myself.

I have been pushing myself physically. I know this has consequences. And yet I’m frustrated by my body reacting exactly as I know it will when I run myself down. And worse than that, I find myself negotiating with my body to justify pushing just a little bit more. What if I take this medicine? Will that buy me more time? How dangerous will it be if I just keep ignoring how I feel so I can push a little bit more for a little bit longer? I’m rationalizing what amounts to self harm all because I want my body to be something it cannot be.

I feel like I should know better than to be so cruel to myself. I should let it go of the foolish need to push. What I need is sleep and my routine. I should take my medicine and instead of using the feeling of relief it brings to push, I should use the relief to rest in comfort so I heal and recover.

I hate that I keep relearning the same basic lessons of chronic disease over and over again. But hating myself for being disappointing is of course the pattern I need to break. It defeats the point. The self is not an attack surface. Being disappointed serves no purpose in this moment. It’s not driving me to be better. It’s driving me to be worse. So I’m letting it go. And I’m hoping tomorrow I’ll go a little easier on myself.

Categories
Chronic Disease Travel

Day 440 and Twitchy

Last night I had a poor night of sleep. My body was just all kinds of weird. A muscle spasm thing kept me awake. I tried magnesium (it’s a natural muscle relaxant), several rounds of Theragun routines, a few stretches, and finally actual muscle relaxers.

Nothing stopped the weird twitching. It was 2am in Germany so I was resigned to a bad night of sleep. I just laid in bed waking myself up every couple of minutes. It was exhausting.

Eventually I got to sleep and seemed to wake up in the morning no worse for wear. I wasn’t especially alarmed, as my body has a tendency to just go off on weird physical tangents for no reason. Whatever the fuck happened it seemed to have passed so I went about my work day.

I broke for dinner around 6pm or so. I ordered Ethiopian and chowed down hard. I was feeling full and sleepy and I figured I’d lay down to digest a bit. I put on some television and was promptly out like a light. I woke up two and an hours half later and realized it was probably time for me to call it a day.

I swear the only thing that woke me up was the knowledge that I had to write my blog post for the day. I’m mostly kidding. The heater turned on and roasted the room so I needed to open the window. But now I’m absolutely going back to sleep now.