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Taking my diabetes treatment into my own hands

martin.janiczek.cz

261–270 of 372 posts

Re: Taking my diabetes treatment into my own hands

#261
post #257

I had a very similar experience with eosenophilic esophogitis (EoE). It's an allergic reaction that causes your esophagus to constrict resulting in acute dysphagia (difficulty swallowing). It can get extremely unpleasant for me as well as anyone around me when an attack happens. The problem is that the latency between eating the food that triggers it and actual symptoms is many many hours, and the symptoms only appea…

I get empty gelcaps from amazon and local nutrition food stores. They cost like $5 for between 100-1000. You can get them in a wide variety of sizes, though you might have trouble if you're looking for something larger than size "000" (1cm diameter, 2.6cm length). Here is a size chart[0] (but there are cheaper sources for the gelcaps).

0: https://ibspot.com/products/capsuline-size-1-empty-capsules-...

Re: Taking my diabetes treatment into my own hands

#262
post #143

Earlier quoted context omitted.

My wife is T1D and she is really scared about the idea of moving to a closed loop system with a pump, but her endo is constantly pushing her towards it even though she is keeping her A1C at like ~6% with her Dexcom CGM. The concern is the the G7 CGM seems to have times where it is so wildly off with readings that a closed loop system could kill her. This weekend the CGM was saying she was all the sudden at 40, but sh…

I don't find the Medtronic solution to be that off. But the closed loop solution can't raise your blood sugar, it can only lower it. It only has insulin which it can dial back or increase. The real danger would be if it detected you very high and then tried to rapidly decrease it. The FDA approved systems do have safeties in there that alarm persistent highs or on any lows. They also won't provide more basal than a m…

Ahh you are right, I had the situation reversed in my head. It would be the false high reading that would be the issue.

That is good to know there are some safeguards in place to prevent an over-correction.

And I agree about the constant wake-ups. The Dexcom system will sometimes not stop alerting when it detects a low, even if she has taken glucose tabs and knows it will be taken care of. If she doesnt interact with the notification it continues to alarm every 15 minutes or so. There is a recompiled APK for the dexcom apps that changes some of the notification behaviors but she hasnt needed to use that recently.

Re: Taking my diabetes treatment into my own hands

#263
post #116

I highly recommend the book "The Diabetes Solution" by Dr. Bernstein. It's written by a T1D-since-childhood who was a manufacturing engineer and used his engineering skills to "debug" his diabetes despite his doctor's efforts to the contrary. However the medical industry rejected his findings on blood sugar control because of lack of medical credentials so he went and got an MD and suddenly more doctors started liste…

The world needs more mad scientists.

Re: Taking my diabetes treatment into my own hands

#264

What I've learned that, as an adult in 2024 in the United States, you cannot take for granted: - That your medical professionals are acting in your best interest - That your insurance company is acting in your best interest - That your medical professional knows what they are talking about - That things that are legal to put in your body will not cause irreparable harm to you - That the legal level of pollutants in t…

While all that is true... the other part is that it's not like non-medical professionals are particularly good at knowing what they are talking about or acting in their own best interest either. In many cases, the institutional care is both horrible and better than what you'd get without it.

Re: Taking my diabetes treatment into my own hands

#265

Earlier quoted context omitted.

That hasn't been my experience. I have never experienced or heard of a doctor deceiving or lying in real life. I dont think I can think of an example from hospitals either.

My dental surgeon refuses to design or install an implant. They will only put in the screw for the implant. Why? Because of a pyramid scheme. That might not be a direct "lie," but it is misleading. Doctors mislead constantly. They tend to accept norms that are harmful because they are systems outside of their control.

I don't think you understand what a pyramid scheme is. There are some unethical providers who optimize for their own profit rather than the patient's best interests but those are a small minority. And it is entirely normal to separate implant design from installation; those things take different skills and equipment.

Re: Taking my diabetes treatment into my own hands

#266

Earlier quoted context omitted.

I almost completely agree, and think we mainly disagree on the nuances. >The idea that there could be a grift set up to take advantage of people in the medical space, for instance, which is highly regulated and supposed to be for the benefit of people first and for generating capital second, is not intuitive to children. The first thing I wanted to touch on is the idea of grift. Just because some has their interests…

I love when I am arguing with someone who I secretly agree with. I appreciate your response. > A doctor doesnt put your individual wellbeing above their own I think an example we could both agree on, would be something like...let's say you have several indicators that you might have a type of cancer. But the doctor will say, well let's not do a whole biopsy, because it's expensive and it's not covered by your insuran…

responding a little out of order

>And this good standing has been converted to currency. Which is a much more isolated and cut throat version of good standing. In many ways it is more unfair. And what you don't realize as a kid is also how EXPENSIVE this "good standing" actually is. To receive the benefits of the technological state we purport to be in you usually have to be upper-class. The poor are often much closer to being completely alone. As if no society exists for them at all

I think this is a supper interesting observation, and a useful way for viewing this whole thing. At some point, people did rely on social currency and their personal memory of interactions to know if someone is "credit worthy".

I'm not sure that it was more "fair" than the hard numerical of financial currency, but I agree that social currencies could have been more forgiving. With social currency, you could go into debt with someone, and start fresh with someone new. The financial currencies, debt/assets follows people through their lives, and even across generations.

Yes, poor people are by parts of society who find they have little to offer. Poor people are free to associate with each other, but often have little use for eachother as well. This

>We don't assume we are still in a period of being "left behind by the herd" because of how great everything is. But in fact, you will realize, when you see someone deny treatment for their advanced cancer due to finances and "the odds of survival" that in fact, you can be left behind by the herd. And the more

I see how that could be jarring realization. If someone thought they had an equal ownership of social wealth, and equal say over the direction of the herd, it would be devastating to learn that it was all a lie at the last minute when it actually matters. I think many people were grifted by those who told them this would be the case, by people who were stating an aspiration as fact, and hoping that enough lies would make it true. Society has a little bit of compassion, but not nearly as much as some want and act as if it does. I do think it is sad and cruel that many people were indoctrinated with this false expectation. It set them up to live their lives thinking the world is a cruel and malicious place, when it is simply indifferent.

>I, on the other hand, think that they don't go far enough. They aren't good enough. I'm actually not so sure what is being "taken for granted" in a for profit system, I pay every fucking dime of it. I am not impressed with its state.

When I say "taken for granted", I mean the little compassion the society and the herd does have, and it is not guaranteed that it stay this way. In fact, it could very easily be much worse, and there are place with no compassion or welfare. There are places even worse than that, without decent rule of law, where being dangerous means you can take what you want or buy and sell humans for their commodity value.

Thats not to say that you cant want and advocate for something better than the current state. Im not sure what you mean by you pay for every dime of it. Is your ideal system one where you dont have to compensate others for what you take?

Re: Taking my diabetes treatment into my own hands

#267

What I've learned that, as an adult in 2024 in the United States, you cannot take for granted: - That your medical professionals are acting in your best interest - That your insurance company is acting in your best interest - That your medical professional knows what they are talking about - That things that are legal to put in your body will not cause irreparable harm to you - That the legal level of pollutants in t…

>I understand that some people would look at that list and say I should have never expected some of those, but pardon me for being propagandized at a very young age that we lived in a country that was good and just. That's my bad I think the problem is that you were raised to think that a "good and just" world is one where there is no risk, no variability, and limited self-reliance. This is a fiction and has never ex…

Honestly, as a society we should be able to guarantee most if not all of those. Every single one of them is an economic trade-off and when you put for profit companies in the loop, it’s obvious that they will prioritize their profits.

The system is for profit by choice, it is under our control as society to guarantee that list or not, and we have chosen not to.

Might be the right or wrong decision, that’s up to each of you, but denying it’s has been chosen it’s very naive

Re: Taking my diabetes treatment into my own hands

#268

Earlier quoted context omitted.

That hasn't been my experience. I have never experienced or heard of a doctor deceiving or lying in real life. I dont think I can think of an example from hospitals either.

My dental surgeon refuses to design or install an implant. They will only put in the screw for the implant. Why? Because of a pyramid scheme. That might not be a direct "lie," but it is misleading. Doctors mislead constantly. They tend to accept norms that are harmful because they are systems outside of their control.

I think there is a conflation occurring between harm and sub-optimal behavior (from your perspective). Is the doctor harmful or simply less helpful than you would like?

Would you be better off with no dental work or healthcare? Zero harm is being done in this case IMO.

If Im alone in the desert dying, I dont think others are harming me for my lack of water and food. That is simple neutrality and indifference.

Re: Taking my diabetes treatment into my own hands

#269
post #215

Earlier quoted context omitted.

In my experience, a blood panel doesn't cover everything typically. My A1C, Insulin, and fasting Glucose levels are all within normal range, but actually I have insulin resistance, likely genetic that wouldn't appear in my general panel for at least two or three more decades. This is common in people whose family history includes poverty or subsistence farming. I'm glad I have the resources to address this while I'm…

Why would a genetic tendency towards insulin resistance be correlated with a family history of poverty or subsistence farming? Is there any research on that? Which specific genes are involved? Which tests were used to diagnose your insulin resistance?

Given the context an epigenetic factor is also plausible.

Re: Taking my diabetes treatment into my own hands

#270
post #257

I had a very similar experience with eosenophilic esophogitis (EoE). It's an allergic reaction that causes your esophagus to constrict resulting in acute dysphagia (difficulty swallowing). It can get extremely unpleasant for me as well as anyone around me when an attack happens. The problem is that the latency between eating the food that triggers it and actual symptoms is many many hours, and the symptoms only appea…

FYI for any other EoE folks: Dupixent is now indicated for EoE. It’s resolved my symptoms completely (both the ones I notice and the ones my gastroenterologist checks via scope). I don’t experience any side effects.

It’s an off-label use, but swallowed fluticasone is also effective for many people. Also has no to minimal side effects. I did that for many years before dupixent was available.

Exciting that you figured out your trigger. I collected a lot of data and made a lot of graphs, but never found anything conclusive.

Great article. Taking control of your health via the tools we have as technical professionals is awesome.

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