tl,dr: There are many ways to make a difference, ranging from donating time/energy/ideas to financially supporting organizations who are making a difference. -- When I was first diagnosed with diabetes (at age 14, three months into high school - ugh), I was stunned. And I didn't want anyone to know, because I didn't want to…| DIYPS.org
When you’re dealing with a challenging health situation, it can be hard. Hard because of what you are dealing with, and hard because you need to navigate getting and seeking care. That typically looks like going to a doctor, getting the doctor to understand the problem, and then finding solutions to deal with the problem.…| DIYPS.org
I used to make a lot of statements about things I thought I couldn’t do. I thought I couldn’t run overnight, so I couldn’t attempt to run 100 miles. I could never run 200 mile races the way other people did. Etc. Yet last year I found myself training for and attempting 100 miles (I…| DIYPS.org
I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma. Stigma has played a huge role in how I have responded to my own chronic autoimmune diseases for almost 20 years, in fact. I’m incredibly disappointed that not much has changed in all…| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
One of the frequent complaints in the literature about exocrine pancreatic insufficiency (known as EPI in some parts of the world, or PEI for pancreatic exocrine insufficiency elsewhere) is that the symptoms are not specific and they can overlap with other conditions. Diarrhea, for example, can happen from a lot of conditions and a lot […]| DIYPS.org
If you’re someone who is considering an IUD (intrauterine device) or has an IUD and is considering a replacement or the removal process, this post is for you. You should know about this! Feel free to share it with a friend. I recently decided to replace my IUD. I was dreading it, because I found […]| DIYPS.org
A new autoimmune disease is exhausting and foreign, until it becomes exhausting and familiar. Exhausting is such a good word for it. Sometimes, it’s the disease process itself that is exhausting and causes fatigue physically. Other times, it’s the coping and figuring out how to wrangle your life into a pretzel around it that is…| DIYPS.org
I’ve previously written about ultrarunning preparation and a little bit about how I approach fueling. But it occurred to me there might be others out there wondering exactly HOW to find fuel that works for them, because it's an iterative process. The way I approach fueling is based on a couple of variables. First and…| DIYPS.org
One of the things I read trying to learn about best approaches for running 100 miles (an ultramarathon) is that it’s mostly mental and logistical challenges rather than physical, because after a certain point everyone is running much farther than they’ve ever trained and what makes the difference is how well you deal with the…| DIYPS.org
After three years of using a multi-purpose activity backpack as my running pack, the strap connector broke, and I had to find and re-stock a new running pack. I use a running pack for when I'm doing long runs for marathon or ultramarathon training. I ended up pulling everything out of my old backpack and…| DIYPS.org
There's a secret behind why #OpenAPS was able to deal so well with my BGs during norovirus. Namely,| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
New Systematic Review And Evaluation of Pancreatic Enzyme Replacement Therapy (PERT) Dosing Guidelines and Research for Exocrine Pancreatic Insufficiency (EPI or PEI) I wrote a new paper evaluating the research behind pancreatic enzyme replacement therapy (aka, PERT) dosing for people with exocrine pancreatic insufficiency (known as EPI or PEI). I decided to do this research…| DIYPS.org
Academic and medical literature often is like the game of| DIYPS.org
Last year, I built a spreadsheet template (and shared it here) to use while training and running ultramarathons to track my fuel consumption. It was helpful for me, as a person with exocrine pancreatic insufficiency, to see and decide based on macronutrient counts for each snack how many enzyme pills I needed to take each…| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
I have a favor to ask of you, especially you as a person who is not living with diabetes. — On day 1 of diabetes awareness month 2022 (also known as today), I saw a tweet. Someone posted a picture of some snacks and asked what people thought it was. Like clockwork, one of the…| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
As I prepared for months for my first-ever 100 mile run, I did a lot of research to figure out how I should be prepared. There’s no one way to “prepare” for an ultramarathon of any distance, and much of the stuff online is about your training plan and physical preparations. Which is definitely important,…| DIYPS.org
I’ve now run two ultramarathons (both happened to be 50k races, with a race report for the second race here), and was planning my third ultrarace. I had my eye on the 50 mile (50M) version of the 50k I ran last year. It’s on a course I adore - a 6 foot wide crushed…| DIYPS.org
When I broke my toe last week, I went back and re-read my post that I wrote with what was helpful when I broke my ankle 3 years ago. As I thought, there were still several pertinent ideas and tools that were useful for a broken toe. But I’ve also discovered a few more specific…| DIYPS.org
I have a new part-time job as a pancreas, but this time, I don’t have any robot parts I can make to help. This is a joke, because I have had type 1 diabetes for 19+ years and 7 years ago I helped make the world’s first open-source artificial pancreas, also known as an automated…| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
#WeAreNotWaiting to make the world a better place| DIYPS.org
Here are the top questions I see about exocrine pancreatic insufficiency (EPI / PEI), especially when someone is newly diagnosed. Section 1 of 7: Symptoms What are the symptoms of exocrine pancreatic insufficiency? Are my symptoms possibly EPI? I don't have this symptom that someone else does, does that mean I don't have EPI? EPI can produce…| DIYPS.org
Talking about AI (artificial intelligence) often veers conversations toward lofty, futuristic scenarios. But there’s a quieter, more fundamental way AI is making a big difference today: serving as an accessibility tool that helps many of us to accomplish tasks more efficiently and comfortably than otherwise would be possible. And often, enabling us to complete tasks […]| DIYPS.org
Every time I hear that all health conditions will be cured and fixed in 5 years with AI, I cringe. I know too much to believe in this possibility. But this is not an uninformed opinion or a disbelief in the trajectory of AI takeoff: this is grounded in the very real reality of the […]| DIYPS.org
Some of the popular use cases of AI agents are to build custom software for other people, and sell it cheaper than big corporate software but still giving you a really good return on your time. A lot of people are quickly making good chunks of money doing that, and automating their workflows so they…| DIYPS.org
I’ve been training for a big goal of mine: running a 100k in a specific amount of time. Yes, I’ve run farther than that before: last year I ran ~82 miles. However, I had someone in my family network who ran 100k last year, and I realized their time made a reasonable goal for me. I’m…| DIYPS.org
2020. What a year. We've been social distancing since late February and being very careful in terms of minimizing interactions even with family, for months. We haven't traveled, we haven't gone out to eat, and we basically only go out to get exercise (with a mask when it's on hiking trails/around anyone) or Scott goes…| DIYPS.org
Have you ever searched for or through medical research on a specific topic, only to find different studies saying seemingly contradictory things? Or you find something that doesn’t seem to make sense? You may experience this, whether you’re a doctor, a researcher, or a patient. I have found it helpful to consider that medical literature…| DIYPS.org
I’ve been puzzled when I see people online say that LLM’s “don’t write good code”. In my experience, they do. But given that most of these LLMs are used in chatbot mode - meaning you chat and give it instructions to generate the code - that might be where the disconnect lies. To get good…| DIYPS.org
If you’ve scoffed at, dismissed, or tried using AI and felt disappointed in the past, you’re not alone. Maybe the result wasn’t quite right, or it missed the mark entirely. It’s easy to walk away thinking, “AI just doesn’t work.” But like learning any new tool, getting good results from AI takes a little persistence,…| DIYPS.org
If you’re like me, you may have been thrilled when (back in the day) it became possible to embed public social media posts such as tweets on websites and blogs. It enabled people who read here to pop over to related Twitter discussions or see images more easily. However, with how things have been progressing…| DIYPS.org
I’ve been taking thyroid medication for a few months now. It surprised me how quickly I saw some symptom resolution. As I wrote previously, I started taking thyroid medication and planned to get more lab work at the 8 week mark. The theory is that thyroid medication influences the production of new thyroid hormones but…| DIYPS.org
What do you see when you see (or think of) diabetes? — In my house, I see small piles of low treatments (for hypoglycemia) in every place that I hang out. On my desk next to my computer. In my bedside table. On the counter next to the door where I grab them before heading…| DIYPS.org
TLDR: I have newly diagnosed Graves’ Disease, I have associated eye stuff (called “Graves’ orbitopathy” or “Graves' ophthalmopathy” or “thyroid eye disease”), subclinical hyperthyroidism, and a new learning curve. Below is what I’ve learned so far and what I’m still exploring. As a person with type 1 diabetes (T1D) - which is an autoimmune disease…| DIYPS.org
It takes a lot of energy to run ultramarathons (ultras). To ensure they have enough fuel to complete the run, people usually want to eat X-Y calories per hour, or A-B carbs per hour, while running ultramarathons. It can be hard to know if you’re staying on top of fueling, especially as the hours drag…| DIYPS.org
Being a raccoon loading a dishwasher is a really useful analogy for figuring out: what you want to spend a lot of effort and precision on, where you can lower your effort and precision and still obtain reasonable outcomes, or where you can allow someone else to step in and help you when you don’t…| DIYPS.org
Sometime in the last year, I decided I wanted to run 100 miles. In part, because I wanted to tackle the complex challenge and problem-solving that is even figuring out how to do it. My situation as an ultrarunner is slightly atypical: I have type 1 diabetes and need to closely manage insulin levels and…| DIYPS.org
This post was written months ago for Prescribe Design, and will also be posted/made available there as a collection of their stories by and about patients who design, but I am also posting here for anyone new to #DIYPS and/or wondering about how #OpenAPS came into existence. -- About the author: Dana Lewis is the…| DIYPS.org
Vibe coding apps is one things, but what about deploying and distributing them? That still requires some elbow grease, and I’ve described my experiences with both Apple and Google below for my first apps in each platform. (I’m writing this from the perspective of someone familiar with coding primarily through bash scripts, JavaScript, Python, and […]| DIYPS.org
When dealing with chronic illnesses, it sometimes feels like you have less energy or time in the day to work with than someone without chronic diseases. The “spoon theory” is a helpful analogy to illustrate this. In spoon theory, each person has a certain number of “spoons” representing their daily energy available for tasks including…| DIYPS.org
Just do it. And by it, I mean anything. You don’t need permission, but if you want permission, you have it. If you’ve ever found yourself feeling stuck, overwhelmed (by uncertainty or the status of the world), and not sure what to do, I’ll tell you what to do. Do something, no matter how small.…| DIYPS.org
Life for a Child is an international non-profit organization that supports children with diabetes by providing insulin, test strips, and essential diabetes care to over 60,000 children in low-income countries who would otherwise have little to no access to treatment. Without access to supplies and skilled medical care, children with type 1 diabetes (T1D) often…| DIYPS.org
One of the things I wish people would consider more often when thinking about AI is how they can use it to scale themselves. What are some time-consuming things that they currently have to do themselves that AI could do for them to streamline their output and increase their productivity? Productivity for giving them more…| DIYPS.org
If I had a nickel every time I saw conflicting advice for people with EPI, I could buy (more) pancreatic enzyme replacement therapy. (PERT is expensive, so it’s significant that there’s so much conflicting advice). One rule of thumb I find handy is to pause any time I see the words “too much” or “too…| DIYPS.org
If you’re feeling overwhelmed by the rapid development of AI, you’re not alone. It’s moving fast, and for many people the uncertainty of the future (for any number of reasons) can feel scary. One reaction is to ignore it, dismiss it, or assume you don’t need it. Some people try it once, usually on something…| DIYPS.org
I do a lot of things most people don’t want to do themselves - and I get that. (For example, recording macronutrients while running? Running for up to 16 or 25 hours? Let alone other choices like building DIY and making open source automated insulin delivery systems not only for myself but more widely available…| DIYPS.org
You’ve probably heard about new AI (artificial intelligence) tools like ChatGPT, Bard, Midjourney, DALL-E and others. But, what are they good for? Last fall I started experimenting with them. I looked at AI art tools and found them to be challenging, at the time, for one of my purposes, which was creating characters and illustrating…| DIYPS.org
The canary in the coal mine was my swollen eyelids. No one (including my providers) seemed to care over the last 3 or so years, but all along, I knew it was a matter of time before my body decided to speak up even more loudly and tell me what else was wrong and what…| DIYPS.org
Two things can simultaneously be true: Doctors may wish they had more opportunities to help patients prevent having worse/later stage outcomes of a disease. Doctors may struggle when a patient seeks health care at an early stage, asking for strategies and intervention support against developing worse/later stage outcomes of a disease. The struggle may be…| DIYPS.org
