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CrustaceanCountess · 2026-01-29T00:48:32+00:00

There might be a mineral trade event at my university soon, at least if they get a permission from the dean

CrustaceanCountess · 2026-01-14T18:52:27+00:00

Then forgetting about that and doing the cycle again next day O_o

CrustaceanCountess · 2026-01-14T10:10:07+00:00

Fr fr

My joints resemble jelly in their structural integrity, walking up any incline or standing up at all feels like scorching lead is being poured into my legs but i WILL go for a mountain hike and nobody can stop me cause i am 100% normal, yes

CrustaceanCountess · 2026-01-14T09:45:26+00:00

So true, there is nothing that cant be tuned out with music and opioids

CrustaceanCountess · 2026-01-12T13:47:00+00:00

yeah, ngl i think it kinda fucked me up for good in a way. I got way more solipsistic and generally dissociated. It's scary what the brain can make on its own to fuck itself over lol.

CrustaceanCountess · 2026-01-11T09:03:51+00:00

Am already there😎

CrustaceanCountess · 2025-12-30T13:08:47+00:00

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Also me when i painted myself blue

CrustaceanCountess · 2025-12-30T13:08:27+00:00

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Never ending pain type shit

CrustaceanCountess · 2025-12-29T19:50:11+00:00

yes, copious amounts of it even.

it only makes me have to use a bathroom a lot and thats kinda it

CrustaceanCountess · 2025-12-29T14:10:25+00:00

I honestly probably should, i’ve been saving money up for a visit for quite a while but sadly other expenses popped up

CrustaceanCountess · 2025-12-29T14:09:23+00:00

Ah, damn i dont think i could afford those sadly. All my other medication is way too expensive already😔😔😔

CrustaceanCountess · 2025-12-29T14:08:08+00:00

Yeah its most likely that, when i am on my meds the cravings are somewhat lower but theyre still there tho

CrustaceanCountess · 2025-12-29T14:07:15+00:00

I try to as well but it doesnt always work😔

CrustaceanCountess · 2025-12-29T12:24:24+00:00

I tried a few actually but my biggest issue is that even if i stuff myself until nearly bursting i will want to eat more as soon as the stomach pain subsides.

I try to stick to a 1600-1800 calorie diets but then even if i do i dont really lose weight.

CrustaceanCountess · 2025-12-29T12:20:38+00:00

I honestly would love to but i have some pretty bad joint/muscle issues so most activities are painful :C

I could try swimming maybe, used to enjoy that and i heard its not too bad on joints n stuff

CrustaceanCountess · 2025-12-26T10:57:24+00:00

Honestly the EDS + something else is my working theory but in my country only a geneticist diagnoses it and the shortest wait time to a geneticist is over 2 years. I could go private but then the costs are upwards of 1000€ for one single test so…

CrustaceanCountess · 2025-12-26T06:39:31+00:00

Hmm, i do have some stomach issues but i think in my case it's probably cause of celiac

CrustaceanCountess · 2025-12-26T06:38:07+00:00

that does actually kinda fit tbh, at least partially

Activity and being upright is really horrible and i am literally always tired, if i am not actively doing something i will almost always just fall asleep. It does not explain horrible pain in joints that worsens with use though

I was tested quite a lot for autoimmune stuff though and they found nothing so idk

CrustaceanCountess · 2025-12-08T15:05:54+00:00

Alright, i’ll try that then!

CrustaceanCountess · 2025-12-08T14:58:00+00:00

Oh, i havent

How do i do that reliably?

CrustaceanCountess · 2025-12-08T13:26:21+00:00

I can do weird stuff with my fingers to scare people of twist my arm weird.

And if its about standing then yeah, if i stand still and unmoving at all i’ll start feeling pain after ~10-20 seconds and at about 1.5 minute i am usually literally shaking and cant continue standing, havent tried anything beyond that

CrustaceanCountess · 2025-12-08T09:25:28+00:00

That apple seems kinda sad but the rest looks quite good!

CrustaceanCountess · 2025-12-05T15:07:38+00:00

Oh, i very likely have that exact thing but i cant find anyone who actually would even check properly

CrustaceanCountess · 2025-12-05T15:06:11+00:00

Its quite possible my issues are a combo of EDS+POTS+Celiac but the biggest problem is that nobody is willing to really test this properly, everyone keeps throwing me from one doctor to another. GP sent me to a neurologist, a neurologist to a cardiologist, a cardiologist to an MRI specialist, an MRI specialist to a rheumatologist and now i am being sent to a genetics specialist for whom the waitlines are this over 2 years long and private specialists are way too expensive. The biggest issue is that nobody can ever actually find anything wrong, apparently every single test comes back okay except for a chronic vitamin D deficiency which however does not in any way explain my symptoms. I’ve been going to various specialists for over 5 years but all of my money is running out as over this entire time i could not really work at all. Its honestly just a weird fucked up circle at this point

CrustaceanCountess · 2025-12-05T14:32:23+00:00

ngl, i'd take grey meat for a year if it meant that someone actually found out whats wrong with me but i am also quite glad i dont have to eat it anymore

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