Tag: chronic illness

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Biohacking Chronic Disease Medical

Day 2028 and Get Better Sometime

I’m going on week three of a crash out in my autoimmune situation and I’m not going to lie it’s scary.

My spinal pain is flaring, my migraines are relentless and I have no timeline for a resolution. I’m not even sure what’s wrong. Did I just overwork myself?

My symptoms are getting better albeit unevenly. And it’s just not very fast. I had many steps forward in my case in the last year thanks to artificial intelligence aiding diagnostics and protocols.

So having a few steps back worried me. As if I can’t know consistently what is going on in my own body, can I ever I trust my health?

I am in a perpetual loop of questioning how hard I can push. Clearly the hard push I did for spring was too much but where is the balance? I feel good and I exercise and then I’m crashed out. I feel bad and keep calm and I’m still crashed out. Cause and effect are not clear this last month.

It is always a confusing experience for folks who don’t see me as sick. And I forget as I’m very open about managing a chronic disease. And I have looked almost indomitable most of the year. Bets from years ago are on a winning streak and it feels amazing.

So there are people new to my life who have mostly experienced a fully functional globetrotting Julie. Why would they know I manage that at a knife’s edge? I haven’t had extended down time till this summer. So now I’ve had three weeks of struggling, it’s a tentative “hey feeling better?” line of questioning. Sort of? Depends on what hour of the day you catch me. I keep thinking I’ll be better when I schedule work and then I am not.

And I hate saying “No I’m not really feeling great and I don’t know when I will.” That’s a scary answer to anyone who doesn’t live with a complex chronic disease. It sounds like I’m unreliable when in truth I don’t want to commit to something I can’t be sure I’ll accomplish.

What should I say? “Don’t worry I’m a cripple so being sick and down is sort of a semi-permanent state. It’s fine!

What about “it scares me more than it scares you. You can move on. I have to live like this.” That is some TMI boundary crossing for most, but I’d also prefer people get an honest answer. There is no guarantee of ever getting better. It’s called chronic for a reason.

I used to try to be a little gentler about this reality. Thanking folks for asking and explaining there is no “better” just yet. I say maybe one day we will figure out what’s wrong and find a cure. And I mean it. I work so hard at getting more functionality back. And sometimes I have functionality for an extended periods. That’s been amazing for me.

I’m less reticent than ever to articulate that chronic illness is quite common. Yes I have a complex case and yes it’s cause is tragic (we tried to have kids) but it’s not a get better situation like a cold. It’s a sometimes it’s better sometimes it’s worse disease profile.

After the pandemic the sheer number of semi-fucked post viral covid adjacent chronic illnesses I encounter are so numerous, I figure why sugar coat it? It’s a get better sometime situation for most of us. I just hope that sometime is soon. So vote for the right to try and the right to compute. For all of us. So that sometimes becomes now and that now becomes permanent.

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Biohacking Culture Travel

Day 2003 and Till the Sweat Drips Down Europe’s Nuts

Few topics of cultural exchange are more more humorous (and occasionally anger inducing) to me as an American with a disability than European heat waves. And Europe is in its worst heat wave apparently ever at the moment.

The persistent resistance of the French, Germans and British to installing air conditioning and updating their cities to manage climate change seems to wobble between old health superstitions and smug moral superiority. Eastern Europe and Southern Europe do not suffer from this issue.

The WSJ editorial board shared this information from France’s ecological transition agency. They are slowly being convinced that the death tolls and hospitalizations that heat waves produce may need mitigation.

The French ecological transition agency said in May guidance that AC may be necessary for the elderly, chronically ill or pregnant. But if you really can’t live without it, use it in only one room of your home, and don’t set the temperature below 79 degrees Fahrenheit. That’s because AC uses too much energy and contributes to climate change.

I prefer to sleep at 20C or 68F. This partially because my sleep & biometric tracking apps as well as my physician recommend a cold dark room to achieve the sleep required to keep my health stable. The 26C recommended by the French for us chronically ill types? It is 79 degrees Fahrenheit.

Yeahhhhh almost ten degrees warmer than my doctor recommends. No thanks you. Even at 72F if I’m down to my socks (always sleep with socks no really) and my underwear I’ll still find myself thrashing under just a top sheet. I once had my neighbors attempt to call the police on me for running air conditioning during a notorious heat wave in 2023 in Frankfurt. It was a noise complaint. Sure.

On my most recent European trip, I brought paper fans. Not electronic (though I did bring two of them as well) but the sort you languidly wave yourself with in an attempt to look cool when in a desultory mood. Which never seems to lift in this heat. It actually does look rather chic and the movement of the air helps.

I brought the pharmaceutical storage grade ice sheets used for shipping injections that have granulated particles that bond with ice to keep them cold longer.

I strap the ice inside a travel vest with dozens of pockets or wrap them around pressure points on my feet, ankles, wrist and neck with scarves when I’m particularly overheated. I’ve seen people do this with socks filled with rice and water kept in the freezer as well.

I have those goofy towels that absorb extra water and keep it cooler that I wear around my neck and head to go under the several wide brim hats I travel with. I always swear SPF 50. A sunburn is a nasty way to bring on heatstroke. I also bring my own ice trays to freeze ice cubes for both drinks & a bowl over which my hand fan blows for faux AC. I’ve dampened cotton sheets over open windows at night with a fan in to create evaporative cooling. It’s not AC but it helps. That’s why I carry two charger fans.

I will also chill wet wipes and my cosmetics. I carry small misting sprays with me everywhere (I like the classic Mario Badescu Rose). I have even mixed mint essential oil into my travel-size aloe antiseptic gel. My soup is peppermint as well to give that feeling of cool. And I always carry few rehydration sachets of electrolytes.

I’ve made friends with these techniques pretty regularly. Hydrating salts and a water bottle refill is a good conversation starter. Because as much as the French fear drafts for their health with artificial cold the Germans seem to think it’s a necessary part of life to suffer the heat (as if we don’t have enough heat in hell) everyone is suffering and needs help to get through this kind of extreme heat.

The only person who makes sweat dripping down his balls sound appealing is Lil’Jon in Get Low. And even he said at the Democratic National Convention that it’s time to get low..er temperatures. So to Europe I say get cool or you can have deez nutz. Let’s all get lower temperatures together.

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.