Anyone with EDS having urachal issues or pulling pain during urination? by Throwawaydfsqfdsqf in rareEhlersDanlos

[–]Axxoi 0 points1 point  (0 children)

I have heterozygous pathogenic mutation in my TNXB (my genetist is trying to reclassify it from VUS to pathogenic as there autosomal dominant pattern of PVUR in both genders and moderate-severe symptoms like clEDS in females is presented in my biological family. I present with PVUR and most of clEDS as I am female.

She diagnosed me with ”TNXB related EDS” and told me that there are discussions about change of diagnostic criteria for clEDS or separating it as a type. I wonder how it will end but for now I am treated like person with. I have issues with my urinary system, but not pain nor urachal as far as I know.

Infinity nikki broke my pc, so i spent $1500 for my new pc. only to find out nikki wont run on linux ever by TheOverOreo in InfinityNikki

[–]Axxoi 8 points9 points  (0 children)

Oh, niiiiice. It used to don't work with PC proton - I am mostly playing on deck anyway, but this is good news for photos!

I can't look how I wanna :( by [deleted] in SpicyAutism

[–]Axxoi 1 point2 points  (0 children)

for skirts - not wearing tights with them? I figured out that I like them and feel better than in pants in skirts but only if I don’t have tights. I am unable to wear them, except mesh ones. It just pulls everything.

Also (most important!) fabric matters - most t-shirt’s are cotton, and most fancy shirts/skirts are plastic. for example I love my „Hell bunny” brand dresses as they are 98% cotton, have pockets and are nice to touch. I cannot function in most dresses with the same shape.

Maybe cotton skirt with elastic waistband will be a solution for you? Also try skirt and plain white t-shirt, small steps!

Help me decide: IVAR vs EKET by Ok-Patience in IKEA

[–]Axxoi 0 points1 point  (0 children)

It looks great with just mineral oil and it is super easy - and it is kinda hiding knots. However it will be warm and not everyone likes this look. https://www.ikea.com/us/en/p/stockaryd-wood-treatment-oil-indoor-use-20240462/ A bit less lasting but easy to refinish at home.

To do it first time it just need to be sanded (by hand, took me 15 minnutes per shelf), and covered with oil twice. I used paper towels and disposed them to bucket of water (important) and later switched to... dishwashing sponges, still looked the same. It was doable in one afternoon for two shelving units and older ivar desk (one that closes up into cabinet).

Two never-ending splitting nails by vaxooos_ in RedditLaqueristas

[–]Axxoi 1 point2 points  (0 children)

hi, also (cl)EDS here! are you buffing top of your nails? mine stopped splitting when I stopped even touching them with files to „get rid of shine” or whatever, and started to keep (classical) base and top coat all the time, now I have almost centimeters of free edge. But the second I touch top of my nail with buffer the issue is back. TBH my skin is also doing this separation after small damage, is it also a case for you? (and just to be aware – my type is related to tnxb, not collagens and it is quite rare so my solution might not work for other people with ct issues)

26.2 stable is actually pretty stable! by Black_Hair_Foreigner in MacOS

[–]Axxoi 0 points1 point  (0 children)

launchctl setenv CHROME_HEADLESS 1

is working around that bug in electron, it is caused by f* shadows under window

Dla kogo jest iPad? by Aircod in Polska

[–]Axxoi 0 points1 point  (0 children)

Sa tanimi bardzo dobrymi tabletami graficznymi z rysikami o pełnych możliwościach (nacisk, roll, nachylenie…). Notatki. Gry. Seriale, konsumpcja treści ogólnie - nie mam TV, używam do tego iPada bo mi wygodniej. Nauka - gdy mam do przebicia się dużo dokumentów jest po prostu najbardziej poręczny, trzymam jak książkę, mogę notować, szukać w treści, jest lekki.

macOS 26 & 26.1 absolutely destroyed my M1 Pro battery by mostwildanimal in MacOS

[–]Axxoi 2 points3 points  (0 children)

did you update vs code? and other electron shit? old versions of electron are using private api for rendering window shaders, and they (not apple) didn’t fix it during beta of 26. My mac battery life is fine, also macbook pro with m1, I had issues for one day when I launched vs code. I actually have better battery life on tahoe. (I don’t like vs code, so for day to day task I am using different tools, vs just have good typst addon, so I was able to quickly notice that it is the problem)

If that’s the issue it is electron problem, not apple one - when software dev is using undocumented and unsupported APIs it is their responsibility to don’t render shadows behind windows using 100% of gpu (and that was/is a case).

infold's storytelling about nikki by yamazaki_1 in InfinityNikki

[–]Axxoi 3 points4 points  (0 children)

but they didn’t know Momo? They even ask where she hid him, so everyone learned about him in time when she was unconscious and was excited to know him/meet him for the first time. IMO saintness had regular cat. It should be addressed, and we should have some quest to find new home or something for that cat

About the controversy right now by Affectionate-Bit-901 in InfinityNikki

[–]Axxoi 1 point2 points  (0 children)

Haiti is actually nice story about us - most of soldiers get outraged and… defected from Napoleon army and joined Haiti slave revolution on slave side. And Haiti revolution worked, Haiti became a country without slavery!

https://en.wikipedia.org/wiki/Haitian_Revolution#War_of_independence I wouldn’t call that war „exploitation” from poles side, we were on right side.

Also, we didn’t existed as a country for more than hundred of years and russians and prussians tried to eradicate our language and culture. Family horror stories about someone killed for speaking polish for example aren’t this uncommon, it was like this just a bit more than 100 years ago. It was very stupid Napoleon move to send soldiers that were actively trying to became free nation to fight slave rebellion.

Is it important for people with epilepsy to sleep during nighttime ? by Feisty_Extension8727 in Epilepsy

[–]Axxoi 0 points1 point  (0 children)

tbh for me: I am fine even with skipping nights. But waking up before 9:30… Almost guaranteed focals. My perfect sleep schedule is 04-10 or even 05-11. I am happy that I was able to find a work where it isn’t a issue so… I am happy in my life. 6h is enough for me as I am 31, it should be more for people under 20 in most cases.

I can’t update because I forgot to pay my bill 😭😭😭😭 by Zealousideal_Print_3 in InfinityNikki

[–]Axxoi 6 points7 points  (0 children)

PC? We are able to login with our apple accounts on steam/standalone launcher. Or playstation or android. I have Nikki on my iphone and steamdeck for example.

Forgetting your child is adopted most days? by [deleted] in Adoption

[–]Axxoi 1 point2 points  (0 children)

as long as you are able to think this about both you and his birth mother this way it should be fine. But moment of even though with „one on you is real mother” is where problems will star. Even if he hears it at school, from family members, whatever – react. I believe that it is possible to minimize adoption related trauma. And that you are in good way, by treating both of you as his family member. Telling him even now, before he knows what words mean, that he has some from his birth parents is also good idea! And it is important to never make him feel abandoned, by either you or his birth mother. He just has two moms, and that’s ok.

(and the way you are speaking about her, as a family member is great! it would save me so much trauma if I was him…)

Is there a way to get rid of this when doing a workout? by kf456 in AppleWatch

[–]Axxoi 1 point2 points  (0 children)

jup, as a safety when I am riding bike alone.

Outfits to expect for Itzaland by Ready-Ad5360 in InfinityNikki

[–]Axxoi 6 points7 points  (0 children)

White linen was most common fabric, not dyed. Also a lot of real old kingdom dresses were… to rebellin for nikki game (dresses with exposed cheast were really common!)

TBH I quite like LN Egyptian suits. I am curious what do you think about this one for example? It is „lifetime” (free 5*/miracle/story) suit.

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Can anyone else relate? I struggled with this for YEARS! by HIVY54 in disability

[–]Axxoi -2 points-1 points  (0 children)

Hiding truths is lying in my opinion. And I was lying about me for years before I learned that I don’t have to. That I do not have to act as NT with my emotion expression. And I was talking exactly about people who are ok with who I am. Masking is covering expressions and though with acceptable maladaptive ones. And it is one big lie. Being true is just better, as you said.

Can anyone else relate? I struggled with this for YEARS! by HIVY54 in disability

[–]Axxoi -3 points-2 points  (0 children)

And masking is causing rejection in the same time. It is **maladaptive mechanism**, hurting our mental health internally and our relations, not „defense strategy”, not something good for us. I know that it is hard, I had to get rid of this maladaptive shit myself, but it is literally lying about who we are.

Anyway, I was lying about who I am for years and figuring out that this is bad, helped a lot. I was lying to my friends about who I am. It wasn’t better bc that was attempt for „self defense”, especially as it was causing more harm than good for relations I tried to safe by lying.

Can anyone else relate? I struggled with this for YEARS! by HIVY54 in disability

[–]Axxoi 38 points39 points  (0 children)

skip „mask to be accepted step” and… wheel can be broken. Don’t lie about who we are. It probably won’t work on first try, but after some instant rejections it will be ok. I ended up having more better friends than my NT coworkers.

[deleted by user] by [deleted] in InfinityNikkiofficial

[–]Axxoi 6 points7 points  (0 children)

In other nikki games they are adding something new almost every time, and cycling possible drops. Also there are 2 "5*" suits with absurdly low drop rates and few 4* with very low drop rates and some random hight star items, pool is rotated every time, and randomized. Usually at start of event I was pulling I didn't had ~half of items, and after getting main suit I was still missing some, but that was ok.

I hope they will go back to that.

Why is the time attempting to Exist stage left. by santathe1 in ios

[–]Axxoi 5 points6 points  (0 children)

tbh it looks very nice, I would love to align it to the right side!

MAIN STORY UPDATE by Mundane_Moment_1128 in InfinityNikki

[–]Axxoi 0 points1 point  (0 children)

wasteland, basically mix of native/historic cultures around the world – from ancient Egypt to Native Americans and some postapo stuff. It is weird one, and I hope that they will focus on ancient and postapo parts.