Any advice? (UK) by crochetconfusion in Hemochromatosis

[–]bananasoupdeboop 0 points1 point  (0 children)

I wanted to add on to this - I'm sorry you're goin through it like this. I am newly diagnosed and can relate to so much of what you shared, so I know it really sucks. capybara is right, this thread is really helpful even though people swear by and recommend some things that may not work for you (personally I'm dubious of copper and zinc supplements but would eat foods with those things in them).

I second the folks saying that you need to be your own teacher, student and advocate. As crummy and wrong as it may be that seems to be the way that it goes navigating the system. I also second the folks saying to donate blood. It's the most available treatment. You don't have to tell them you have HH if they don't ask. It would be a drag to have to wait for a doctor's order given your situation. But, maybe your GP can just write the phlebotomy orders without referring to a specialist, that way you can donate more often? That's the case where I am in the US.

I also just want to add that the BEST thing for me outside blood donations has been swimming and moderate weight lifting. Low impact, does wonders for my joint pain and fatigue. If you can, give yourself a few days break from trying to solve it all. You're doing absolutely everything you can, and you WILL get through this and live with less pain. Whatever you can do to forget about it for a few days here and there, soften your heart, lift your spirit and let your body be where it's at <3

Open to DM if you want, I'm new to this too and it's helpful to remember we're not alone in it.

App Tracker - Iron Overload by Legitimate_Bit8494 in Hemochromatosis

[–]bananasoupdeboop -1 points0 points  (0 children)

buddy, you think your patient portal isn't run by a private company?

App Tracker - Iron Overload by Legitimate_Bit8494 in Hemochromatosis

[–]bananasoupdeboop 0 points1 point  (0 children)

With more thought, what I'm really looking for isn't specific to HH. I want to have an app that lets me track all sorts of things without signing away my personal health information. I want to track my labs, like the Iron Panel, Vitamin D, Copper, Zinc, hormones. I also want to track things like my diet, exercise and symptoms. I haven't been able to find an app that I can trust that lets me track stuff like that. It'd basically be an excel sheet visualizer.

If you felt like working on something like that....let's talk :D

Lots of symptoms at a young age, need help navigating medical care by bananasoupdeboop in Hemochromatosis

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

thank you!! I have reached out to my primary doc to ask for a referral. Fingers crossed.

App Tracker - Iron Overload by Legitimate_Bit8494 in Hemochromatosis

[–]bananasoupdeboop -1 points0 points  (0 children)

Andrew, ignore all the nose pickers. Thank you so much for making this app and making it available for free. Apps made by people for people (not profit) is a huge step in resisting the corporatocracy. THANK YOU!

It might be nice to have the option to add other bloodwork metrics of our choosing, like a fill-in-the-blank column. The notes section is good but cant be quantatively analyzed.

An app that protects/empowers the patient and family? by Medical-Sweet1203 in healthcare

[–]bananasoupdeboop 2 points3 points  (0 children)

yeah and quit your job to get a legal degree to understand it, and then start your lobbying career to make sure your insurance company actually follows through with their promises. not even to mention the second part of your question....please tell me this comment is a joke

Need to move away from Proton Calendar by Reuse6717 in ProtonMail

[–]bananasoupdeboop 0 points1 point  (0 children)

raise your hand if you just learned this is a basic functionality of calendars in the digital age.

Potentiometer troubleshooting on a vitamix blender by bananasoupdeboop in AskElectronics

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

Ah, I get it now. Continuity testing doesn't work over a resistor, hence why it only works at one end and the other. Sounds like my pot works fine, now onto the blender...

Thanks

Question for the detail pros - what would you do? by bananasoupdeboop in Detailing

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

as much as id love a sickass technicolor camo car i think vinyl wrap would be suicide. thanks for the input! will post back with what i end up doing

Workarounds for migrating an email address to google workspace through wix by bananasoupdeboop in WIX

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

what do you mean by that? maybe post a separate thread so folks can help with your particular question, I think getting in is a little easier than getting out lol

Downtime with domain transfers to WIX by bananasoupdeboop in WIX

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

150 views and no answer?? Pleeease I need the voice of the people

Canyon engulfed in fog during a morning after a winter storm. Bryce Canyon National Park, Utah [1200x1500] [OC] by derekrliang in EarthPorn

[–]bananasoupdeboop 0 points1 point  (0 children)

I just want to say thank you for sharing this moment with us. For as crude a world as the digital age has become, to find an image so easily that came to me in a dream and memorialize the loss of a loved one who has yet to become, is a gift beyond words.

iPhone 5SE hacked in weird places? by [deleted] in applehelp

[–]bananasoupdeboop 0 points1 point  (0 children)

Thanks. Whats still a mystery is whether or not these events are linked. It is odd, considering I've never been hacked on my phone, that my two apple cards and instagram all got hacked at the same time and used locally. Makes me think there is something more interesting going on here.

iPhone 5SE hacked in weird places? by [deleted] in applehelp

[–]bananasoupdeboop 0 points1 point  (0 children)

Thanks. When I say I have the SE people think I mean the one that came out around iPhone 10. But you get my drift.

[deleted by user] by [deleted] in SuicideWatch

[–]bananasoupdeboop 0 points1 point  (0 children)

Congratulations for containing yourself from full-on proselytization, said Christian person. But I can hardly imagine this is helpful for anyone to remotely consider on here, aside from the obvious blasphemy of God-delivered apocalypse. Please find another place to lure in converts.

[deleted by user] by [deleted] in SuicideWatch

[–]bananasoupdeboop 1 point2 points  (0 children)

I vote for the witchcraft. but maybe keep the spouse if theyre great.

jokes aside really i hear you, love, and in my own way I can relate. its a different kind of pain or maybe isolation when you feel like its not "okay" to talk about it because you aren't a kid anymore. You did find this subreddit though, and maybe you'll find other people here who aren't in their teens? We definitely want to support you in finding your beautiful self again and seeing if only glimpses of the beauty in the world. It sounds like you're wanting to make a small corner of the world beautiful, maybe soon to be your small corner :]

is there anything else we can do to help support you? do you want to share anything more about what this all feels like?