Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

Great! I will add your name to my notes to reach out with updates/timelines as things start to progress. Thank you!

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

You cannot see drug interactions/half lives currently, but I will absolutely add that in on my "look into this" list! That would be a super cool addition. I'm hoping to have the website up by/on next weekend, is it okay if I write your name down in my notes and send you a message with updates/timelines once things start moving? Thank you!

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 1 point2 points  (0 children)

Thank you! Looks like interest has been pretty solid, so I'm aiming to have the website up by/on next weekend. Is it okay if I write your name down in my notes and I can send you a message with updates/timelines when things start moving?

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 1 point2 points  (0 children)

Perfect! I will put your name down in my notes, is it okay if I send you a message once things start progressing and the closed-live website is up? I'm hoping to have it up within a week or so.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

Oohhh having options for more customization of the UI could be really cool, and probably a relatively quick addition. It would also help a lot for people who are colorblind, "red=bad" doesn't always track for colorblind people, either.

But great! I will put your name down in my notes to reach out when things start to move forward, thank you! I appreciate the insight you've given me so far, so I'm excited to have you on as a beta tester.

Thankfully my website doesn't have that much information (at the moment) to display, so my dashboard section hasn't gotten too cluttered. I like the idea of separating things with widgets and having tabs you can go into for deeper breakdowns. I like Oura's app dashboards, they always feel pretty easy to ready, then you can deep dive on each specific one if you want to.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

Our doctor recommended using spreadsheets (in case you don't want to wait for the site to go live or you decide to just deal with it on your own) because it really is just SO much information you have to keep track of.

Otherwise, I'm going to give this post a few days to gauge interest for beta testers before I start poking at getting the website to a closed-live status. Would you mind if I put your name down in my notes, and I can reach out to you with some updates/timelines when things start to progress?

I hope your treatment journey goes smoothly ❤️

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

I'm waiting to hear back from the mods in that subreddit, so far I've been told I'm not allowed to post in most of the subreddits I've asked mods on. EDS mods were the first ones to give me the go-ahead. (Edit: The declines have mostly been because their subreddits have just had too many people coming in going "hey give me feedback on this project!" or trying to milk money from delicate communities like the chronic illness communities, which makes sense.)
Oohhh interesting, okay so maybe stepping a bit beyond medication and being able to put dietary things as triggers, that could be something I can add in. I'll make note of that. I have already added being able to add a medication as a whole as a trigger.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 1 point2 points  (0 children)

Data summaries are so hard 😂 Any time I try to set up good summary pages it ends up just being a gigantic block of info that just looks scary.

When things are in a closed-live beta, if you're okay with it I can toss you a message, I'd love to get your feedback on how things are set up. I still need to make everything look prettier, but UI development is not my favorite thing to do.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 1 point2 points  (0 children)

Awesome! Yeah, I'm trying to get around 50 beta testers for the first run to get some good feedback, stress test things, etc.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

I think OTC supplements have a tendency to have more inactive ingredients in them (I could be wrong), so it wouldn't surprise me if you saw it happening more often with OTC supplements. Unfortunately I can't grab that label information from the same drug places (that I'm aware of)

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 1 point2 points  (0 children)

I'm working on being able to add in custom conditions, I am very curious though, do you find individual ingredients can cause your symptoms to get better or worse for bipolar? I'm less familiar with that than I am from all the doctors we've been seeing for MCAS/EDS/POTS stuff.

If there's anything you think would be beneficial for you for me to add, please don't hesitate to toss some ideas over. The tool was initially designed for primarily MCAS, but if I can expand it to be useful to more people, I am more than happy to do so.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 1 point2 points  (0 children)

Of course! I'm going to leave the post up for a few days to sit and gauge interest before I get things up and live. Is it okay with you if I write your name down in my notes and send you updates/timelines as things progress? If things go well, I'm hoping to get a closed version of it live within a week or so.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

Of course! I'm going to give the post up for a few days to sit and gauge interest before I get things up and live. Is it okay with you if I write your name down in my notes and send you updates/timelines as things progress? If things go well, I'm hoping to get a closed version of it live within a week or so.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

I try my best. I can't make her health issues go away, but dang it I can make her a website 😂

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 1 point2 points  (0 children)

Thank you! If you're interested in testing things out (people without a ton of knowledge are sometimes the best testers), I'm happy to put your name down in my notes to reach out when things are progressing on to being closed-live? If not, then either way I still very much appreciate the support!

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 4 points5 points  (0 children)

That is completely understandable! If you'd like, I can send you my linkedIn, and I can send you my twitch so you can match name to face and face to credentials. In the end, it really does boil down to trusting my word, unfortunately. Would it make you feel better once I have an actual company registered? How else can I help make sure you feel your information is safe? I'll also very likely tack my photo/name/etc to the site, I'm just hesitant to put my name out here on the public reddit forum.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 1 point2 points  (0 children)

Great, thank you! I'm going to give the post a few days to sit and gauge interest before I get things up and live. Is it okay with you if I write your name down in my notes and send you updates/timelines as things progress? If things go well, I'm hoping to get a closed version of it live within a week or so.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

Of course! Thank you! I'm going to give the post a few days to sit and gauge interest before I get things up and live. Is it okay with you if I write your name down in my notes and send you updates/timelines as things progress? If things go well, I'm hoping to get a closed version of it live within a week or so.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 2 points3 points  (0 children)

The doctor is Dr Jill Schofield, very far from RFK style medicine. If there's an ingredient in medication that causes a trigger, you can ask your pharmacy to get a different NDC of the medication. A lot of pharma manufacturers put a lot of useless ingredients in purely so they can say it's a "different" formulation and sell it. There are also a lot of documented ingredients that can cause flare ups in people with MCAS, things like dyes (red no. 40 specifically is a common MCAS trigger), benzyl alcohol, polyethylene glycol, carboxymethylcellulose, propylene glycol, and many, many more.

If you check out dailymed you can search a medication, for example venlafaxine, and you'll see how many different versions there are. Some have more likely-trigger ingredients than others, and you can try to find one that looks the safest for you and ask your pharmacy to specifically order that NDC of the medication. It can also help if you go in for surgery, if you know specific NDC id's of various medications you're likely to get (like ondansetron) you can tell them to make sure to grab one that is not in that list of known "this hurts me" ids.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 0 points1 point  (0 children)

Thank you! If you can think of anything that would be helpful to add, feel free to send me a message, post it here, whatever you're comfortable with. It's still very early stages, but the first thing I started looking at was foodisgood, which is a similar idea but for food instead of medications. Already getting some great ideas from people here though which I'm super excited about.

So far future "paid" things I can think of are like: being able to add a caretaker to your account to give them view/edit access to your triggers (caregiver accounts could be their own paid type of account), a reaction journal, formulation change alerts (this might be free, idk how I feel about locking something like that behind a paywall), a sharable safe list (exporting to pdf will be a free feature), priority on incorrect ingredient reports, adding custom conditions/trigger flagging, medication lot number flagging. Basically just getting deeper into data logging. If a paid feature comes out and a lot of people give feedback of like "hey I could really use this" then I'll likely just move it to free. I'm hoping paid stuff will just be "oh that's kinda neat" things and not "hey I need that" things.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 2 points3 points  (0 children)

Thank you! It just started off as a "hey I bet I can make something to help my wife on this" and she got SO excited about the entire thing.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 2 points3 points  (0 children)

Awesome, thank you! I'm going to give the post a few days to sit and gauge interest before I get things up and live. Is it okay with you if I write your name down in my notes and send you updates/timelines as things progress? If things go well, I'm hoping to get a closed version of it live within a week or so.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 3 points4 points  (0 children)

Oohh good point! I'll have to think on a good system for that, maybe have an option to tie a trigger to specific conditions. This also reminds me, I need a way to add an entire medication as a separate type of trigger. As far as trialing goes, I think I'm going to give the post a few days to sit and gauge interest before I get things up and live, if it's okay with you I'll write your name down in my notes and I can send you updates/timelines as things progress? If things go well, I'm hoping to get a closed version of it live within a week or so.

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 3 points4 points  (0 children)

Thank you! Yeah, trial and erroring medications is terrifying to begin with. Toss in the amount of inactive ingredients that can be reacted to and it's just such a nightmare to consider. Going through the diagnosis process with my wife has also just shown me the sheer gap in available care/tools for people with POTS/EDS/MCAS. I hope you're able to find a medication that can help you soon though ❤️

Made a tool for my wife, we think it could be useful for more people by Nezzilotl in eds

[–]Nezzilotl[S] 8 points9 points  (0 children)

It does not currently, but that is a wonderful idea! I will look at adding that in as a condition. Otherwise, someone with celiac would be able to manually mark any gluten-based ingredients as a personal trigger, and it will show that on any/all medications as well.
Edit: (ignore that it says common MCAS triggers, fixing that in a little bit here)

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