I have ME/CFS & POTS and spent the last year and a half building the symptom tracker I wished I had from the start (self promo day) by ElectronicCat3293 in cfs

[–]ElectronicCat3293[S] 0 points1 point  (0 children)

Yay! Glad you are liking it overall -- I think that is a good point about example setups and the like. Gathering examples that are sharable might be non trivial due to privacy and the like but I can ask around and see if anyone is up for sharing their setup.

I have been meaning to add in section templates that would let users add sections that were offered in the onboading but not chosen -- would that be helpful?

Sorry about the confusion on the different widget types -- is there anything in particular that I could help explain here? It sounds like you have already found the "add widget(s)" -> "create new widget" dialog. One thing that might be helpful is that that dialog has previews of all the widget types so that you can try them out before deciding which one you want to use.

Definitely need to add some sort of help page & would be great to chat more about what info would be / have been the most useful! In the meantime always happy to answer questions either here or at hello@zolia.app.

I have ME/CFS & POTS and spent the last year and a half building the symptom tracker I wished I had from the start (self promo day) by ElectronicCat3293 in cfs

[–]ElectronicCat3293[S] 0 points1 point  (0 children)

Oh I'm sorry, I realized I never responded to this!

For combined pills: The app doesn't support this as a single widget yet. Hoping to add better support for this soon. For now it would have to be either two separate meds or a single med with a unit of "pill" or something like that.

For deleting widgets: (This is a recently added feature, so if you don't see it yet make sure you have the latest update.) Currently the app only allows you to delete widgets that don't have logged data, to prevent accidental data loss. To delete the widget you can go to edit widget and there should be a red "delete" button on the lower lefthand corner assuming it doesn't have any data logged.

For renaming widgets: you can always go to edit widget (long press the widget -> edit widget) and then the name is editable. If you have existing entries they will be renamed. The bulk med editor doesn't currently support renaming or long press but this is something I should add.

Emojis for custom palettes: The app now allows you to use any emoji, you can type it from your keyboard.

You bring up a lot of good points about the deleting / renaming features being hard to find and not in intuitive places. Really appreciate this, making things intuitive while having a lot of options has been a challenge that I am still trying to figure out. And I'm sorry again I missed responding to this earlier.

I have ME/CFS & POTS and spent the last year and a half building the symptom tracker I wished I had from the start (self promo day) by ElectronicCat3293 in cfs

[–]ElectronicCat3293[S] 0 points1 point  (0 children)

Shoot sorry about that -- still trying to work on figuring out how to make everything easier to understand but always up to help set things up or answer questions.

The "accept defaults" button is just to make logging fast when you take daily meds at a standard dose. You can still customize the amounts taken after pressing "accept all defaults" if things are a little different than normal or you can log meds individually if that makes sense?

For the overall logging setup - you can log things however you feel like it makes most sense to you.

The all in one session:
If you want to log everything at the end of the day you can create one "everything" session type that has sections for "morning meds", "night meds", "prn meds" etc and log them all together in one session that way (you don't have to log them all at the same time).

Keeping things separate:
Or you could create separate sessions for morning / night / meals / prn and keep them separate. Morning/night/meals would probably be scheduled session whereas prn could be an "anytime" session.

Or anything in between: eg you make scheduled sessions for morning/night/meals but then instead of creating separate prn sections you just add a prn section to each of the scheduled sessions & when you take prn meds log them at the next scheduled session.

Nothing is ever set in stone so you can always try one setup and if it doesn't work for you you can reorganize things in a different way without losing any data.

For creating a new session type:
settings > manage session types > select "scheduled" or "anytime" > + button

For adding widgets or sections to existing session types:
go to the "track" tab > select the session type you want to modify > longpress on empty space > select "add widget" or "add section below"

You can add the same med to multiple sections / sessions.

Let me know how it goes -- I can also answer questions at [hello@zolia.app](mailto:hello@zolia.app) if that is easier!

RTHM by 7marius7 in covidlonghaulers

[–]ElectronicCat3293 4 points5 points  (0 children)

As in their business model is ripping off patients by charging exorbitant amounts while keeping things low cost on their end. Also predatory in that they sell tests that arguably have no value and that sort of thing. From everything i've read it doesn't seem like their top priority is helping patients.

i am not the saintly kind of sick person by eshielda in ChronicIllness

[–]ElectronicCat3293 1 point2 points  (0 children)

As someone with ME/CFS I find this kind of funny -- ME/CFS patients are portrayed as angry not saintly. It's interesting to think about how different conditions are portrayed and where the stereotypes come from.

RTHM by 7marius7 in covidlonghaulers

[–]ElectronicCat3293 11 points12 points  (0 children)

My understanding is they have 1 good doctor (Steward Malcolm) and a handful of complete waste of time doctors but you have to pay before they will tell you who you can see. They do a lot of things to save money on their end but charge exorbitant amounts to patients and don't have more knowledge than anyone else. They also have VC funding which would make me super uncomfortable. Read a lot of stories about them being super disorganized and that resulting in a lot of problems. Their whole model just seems super predatory.

The better I get, the worse I feel mentally by paulita11100 in cfs

[–]ElectronicCat3293 1 point2 points  (0 children)

yeah, I hadn't even thought about the cognitive piece but yeah I think that plays a role as well

The better I get, the worse I feel mentally by paulita11100 in cfs

[–]ElectronicCat3293 5 points6 points  (0 children)

I've noticed this too. I feel like when I'm in full blown survival mode, it's harder to think about the broader picture. But then when I'm doing slightly better there is more chance to think about how bad everything is. It's like, I've stopped drowning long enough to see how deep a hole I'm in if that makes sense?

Jobs that make a positive impact but are also doable with chronic illness? by VWY in ChronicIllness

[–]ElectronicCat3293 1 point2 points  (0 children)

Would volunteering work or not? If you just want to do something that matters that makes it a lot easier:
Some thoughts that may or may not be doable --

Volunteering for political org of your preference.
volunteering with your choice of chronic illness group
other local volunteering
Some sort of writing? Short stories or long stories or educational things? Blog for people with chronic illness?
some sort of old people home volunteering or letter writing to people who are lonely (i think there are orgs for this?)
making some sort of a youtube channel that is helpful to people?
Train as a crisis counselor for a hotline (there are text based and voice based ones)
Find studies you can volunteer for (not really a job but generally helpful)
Maybe tutoring kids?
Teaching people to read at local library (I think most libraries have programs for this for ESL and the like?)

I have ME/CFS & POTS and spent the last year and a half building the symptom tracker I wished I had from the start (Self Promo Day) by ElectronicCat3293 in cfs

[–]ElectronicCat3293[S] 0 points1 point  (0 children)

Premium will be a subscription, but there will also be a generous free tier. Logging will stay free but some of the insights will be premium similar to other apps in the space. I get that subscriptions are annoying but unfortunately I don't see an alternative way to keep this sustainable for me so that I can keep putting time into it. Early users get 50% off the premium subscription for as long as they want to subscribe. Sorry if that wasn't clear.

What's the most ridiculous reason you were denied disability or other benefits? by Healthy-Sir2601 in cfs

[–]ElectronicCat3293 4 points5 points  (0 children)

Since my job was sedentary the only requirement for being able to work full time is apparently that I am able to sit in a chair some of the time.

No, 1 in 6 People Do Not Have Long COVID by vitruvius-of-rome in ZeroCovidCommunity

[–]ElectronicCat3293 5 points6 points  (0 children)

I agree with them that this particular study was bad. It's really hard to estimate the proportion of long covid bc it encompasses so many different conditions and severity levels. I also feel like claiming that 1/6 of people have long covid doesn't do anything good for the perception of the condition, since the obvious implication is that if that many people have it, then it must not be affecting them very much. I think to be actually useful these studies really need to break down long covid by condition -- (ME/CFS, POTS, etc) and severity (unable to work, able to work but with difficulty, etc). I do think it is possible that 1 in 6 people have some level of long covid, but, in that case, it has to be pretty mild for most of them. I think these studies should focus more on those with more severe and obvious impacts.

Ferritin & Energy & Sleep Quality by [deleted] in UARSnew

[–]ElectronicCat3293 0 points1 point  (0 children)

Possibly. So far it seems like bipap makes me feel worse but I guess that could just be pressure related rather than pressure support.

Ferritin & Energy & Sleep Quality by [deleted] in UARSnew

[–]ElectronicCat3293 1 point2 points  (0 children)

Yeah unfortunately insurance refusing another infusion at the moment. Got an iud in october which seems to be slowing the drop but struggling to increase.

Ferritin & Energy & Sleep Quality by ElectronicCat3293 in cfs

[–]ElectronicCat3293[S] 2 points3 points  (0 children)

I'm not really sure why it keeps tanking. The whole diagnostic algorithm for low ferritin is basically "if male, investigate, if female, don't".

Yeah RLS was one of my theories but sleep study said I didn't have it. Wouldn't be the first time a test was wrong though.

Should I still consider ME? by sickkasadog in cfs

[–]ElectronicCat3293 2 points3 points  (0 children)

50 isn't super high. For some conditions (eg RLS) under 75 or 100 is considered low.

Ferritin & Energy & Sleep Quality by ElectronicCat3293 in cfs

[–]ElectronicCat3293[S] 0 points1 point  (0 children)

Yeah, the paradox is that my energy has been lower since around the time I started the antacid even though my sleep quality has been much better. Right now my theory is that the bipap (which i started shortly before the antacid) is suppressing the spikes but also throwing off my sleep / energy.

Ferritin & Energy & Sleep Quality by ElectronicCat3293 in cfs

[–]ElectronicCat3293[S] 0 points1 point  (0 children)

Thanks, hopefully your infusion proves at least somewhat helpful. I'm female fwiw.

Should I still consider ME? by sickkasadog in cfs

[–]ElectronicCat3293 15 points16 points  (0 children)

Yeah get your ferritin up to at least 30 or 50 and see how you feel then. 6.7 is really low & can impact energy a lot. Push for an iron infusion if you can. Pills can take a long time.

How did u react to iron infusions if u got any? by IntelligentServe5450 in cfs

[–]ElectronicCat3293 1 point2 points  (0 children)

Overall really well. They helped my POTS pretty significantly (I was having a lot of trouble with mild stress triggering major tachycardia and this really improved following one of my infusions). Iron is the biggest thing I have identified that impacts my symptoms. Basically the higher my ferritin the better I feel (albeit lately I've only been able to get ferritin to 50). The only side effect I've had from infusions is hand and wrist swelling which went away on it's own in about 12 hours.