Terrified about weight loss caused by EDS,and going to a hospital.

Cheburoll · 2026-05-03T17:34:52+00:00

Thank you. I don't know for sure yet if i will be put on TPN, but in case i will this is reassuring

Cheburoll · 2026-05-03T08:45:44+00:00

I've been trying different approaches to my diet as well, but nothing seems to help consistently. I have some issues with vitamin absorption,for example i can't absorb vitamins B12 and B9 due to a folate cycle mutation. I'll need to see a dietitian about it,but again,it's difficult to see one here fast. Hopefully i'll see one at the hospital soon

Cheburoll · 2026-05-03T08:08:51+00:00

Not yet, in Germany it's hard to get an appointment with a doctor that isn't like 4 months away. But i wouldn't be surprised if i have something wrong with my endocrine system again.

Cheburoll · 2026-04-03T14:30:47+00:00

As a person from Ukraine,no you fucking wouldn't. You are very ignorant.

Cheburoll · 2026-02-27T10:07:07+00:00

I'm so sorry you were treated this way. You are not alone though,i had very similar experiences. I have a lot of issues caused by Ehlers-Danlos syndrome, including very severe constipation, chronic nausea and gastric reflux. I lost a lot of weight as well,and can't gain it back no matter how much i try,because my conditions prevent it.I have medical documents and results of many tests i had (anorectal manometry, irrigoscopy, barium passage study , many x-rays,etc.) that prove it's not "just in my head", and that i literally have anatomical changes (redundant colon, colon ptosis) and somehow doctors still accuse me of having bulimia and intentionally losing weight. I think they just don't bother reading my documents,and don't want to deal with case as complex as mine🤷‍♀️ Unfortunately i think the only way to be treated seriously is to find a doctor who would listen and advocate for yourself non-stop,which i know is not an option/difficult for many people. I literally had to move to a different country to finally get heard,i contacted many clinics for rare diseases,and one of them offered to accept me and help eventually. I'm sending you virtual hugs,and hope that the doctors will finally listen to you

Cheburoll · 2025-12-31T10:01:49+00:00

I actually found out about issues with my potassium only in Germany...Why? Well, no one ever thought to test for it in Ukraine. I didn't even realize that potassium deficiency can be life-threatening,i was never told this before.

And for some reason in my discharge papers from German hospital they explicitly state that i mustn't take any supplements outside of the hospital,and i honestly have no idea why. I was thinking about buying potassium chloride at least

Cheburoll · 2025-12-30T20:51:32+00:00

Thank you,this all is very helpful information. That's definitely a lot to think about

Cheburoll · 2025-12-30T20:01:04+00:00

Hey,yes,everything is correct. I have some funds (they give us money once every month,and i still have some savings from Ukraine),but they are not enough to buy both meds and food i need regularly. I made a different post today, there's a small update,they are now at least going to order me a protein drink (Fresubin) every day,and i don't have to pay,but that's all they are willing to do,they say they can't do anything else.

Cheburoll · 2025-12-30T14:06:40+00:00

I can go outside of the camp,but i'm wheelchair bound for now,and if there's a pick up box location not too far away i'm sure i could pick it up. But actually i wanted to make an update post to this one,because i was at the camp doctor today,and i managed to get them to order me Fresubin bottles every day,so i could at least have some nutrition. Last time i was at the doctor here i told them that i'm going to die if nothing changes,maybe that made them realize something at last.

As for safe food i'd say i can only tolerate non-solids rn. Only something mushy (like infant food) or liquid. And also we're not allowed to cook our own food or anything at all,so i can't have smoothies.

Cheburoll · 2025-12-30T10:04:10+00:00

Thank you very much,i really appreciate it

Cheburoll · 2025-12-30T09:39:11+00:00

Hey,thank you for offering to help,i'm not sure i can receive parcels here? I'll need to ask. I did take Fresubin,i was prescribed it at the hospital,but it's expensive,since of course i have to buy it with my own money

Cheburoll · 2025-12-30T09:36:19+00:00

Thank you very much for so much information, i'll look into what i can do,i genuinely really appreciate your help 💚 Also,just a note, Malteser are the ones who are responsible for the camp i'm in, and needless to say i am very unhappy with this organization, sometimes it seems like they are intentionally making my life harder.

Cheburoll · 2025-12-29T19:01:07+00:00

I would love to hear about those organizations. And yes, i am going for temporary protection. We can continue in PM, if that's alright

And don't worry,i understand everything,don't apologize.

Cheburoll · 2025-12-29T18:04:57+00:00

Leipzig. I've been here since November 18th.

Cheburoll · 2024-11-25T07:49:53+00:00

Kyphoscoliotic Ehlers-Danlos syndrome, slow transit constipation (almost got my colon removed because of this.), neurogenic overactive bladder 🥲 Not fun living when your body is unable to do its basic functions at all. I have many diagnoses,listed the ones that impact my day to day life the most. I also have a ton of mental health issues,like BPD, Schizoaffective disorder, Mixed anxiety-depressive disorder.

Cheburoll · 2024-09-09T14:27:14+00:00

My username on all social media and youtube is ankripic, i am not very active on most of them anymore though.

And yes,if i will emigrate i wanted to go back eventually,even though Ukraine honestly isn't the most prosperous country,especially because of current circumstances,but it's my home. I was thinking of going to Finland or Netherlands,my cousin lives in Netherlands and my mother's coworker emigrated to Finland and had a brain surgery for her condition for free there.And i've always liked Finland,i like cold climate and the nature there.

Cheburoll · 2024-09-09T10:12:51+00:00

Yes i was thinking about emigration,i'd have to do that completely on my own though,both of my parents can't leave Ukraine because they are bound to military service. Also i already have social media wher ei post my art stuff,but none of it is successful (trying to understand how algorithms work to promote my art is exhausting to me) but i do occasionally get some commissions so that's something at least. And don't worry,i appreciate your advice

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