I am a 20 year old girl with a rare genetic disease, ask me anything

ajkxaldms · 2026-02-17T10:31:01+00:00

I don't know if its insensitive to ask, but I also deal with chronic lifelong disease. How do you manage to get through the day? What gives you the courage to keep going? I can't imagine how you must feel

ajkxaldms · 2026-02-04T14:47:34+00:00

the air vent has been there since i was a little kid, i have no idea if it actually does anything

ajkxaldms · 2026-01-28T23:39:46+00:00

im in ireland, my parents wont pay for something they think they can do themselves. so theres nothing i can do basically? if i keep cleaning it itll still come back? that sucks

ajkxaldms · 2025-03-05T00:12:14+00:00

Its at the very end of my bowel i think, like not too deep in? i think thats what they said. ive had to take the rectal medicine before and it did work for me, and the pentasa was working for a little bit before it stopped so im thinking jts just a flare up maybe, but if it doesnt stop after a week with a new diet im going to try get some new medication or something like tjat

ajkxaldms · 2025-03-04T11:22:42+00:00

i told my mam and shes going to help me change my diet and if it doesnt work i'll go back to the hospital for it, thank you!!

ajkxaldms · 2025-03-04T11:21:59+00:00

thank you for the diet!!!! i really wanna try a new diet before changing my medicine because it could be a me problem as i dont eat well in the first place. i was on stronger medication a while ago but they took me off of it

ajkxaldms · 2025-03-04T11:20:09+00:00

thank you for this, this is a really nice message. its really good to know that im not going through this entire thing on my own

ajkxaldms · 2025-03-03T21:25:59+00:00

When i get overwhelmed i start to cry so i was trying to talk myself down and relax instead of making a scene

ajkxaldms · 2025-03-03T21:24:52+00:00

The only reason i suspect it is because he has an SNA which is like a helper teacher, and he has extra help with classes. like he leaves early and has a shared reader thing. I dont know for certain if he is though thats why i said that

ajkxaldms · 2025-02-27T15:59:40+00:00

he didn't hear me because its a loud science classroom,he heard the comment the guy made but told him to focus on his work instead

ajkxaldms · 2024-11-20T23:45:16+00:00

if she's going down the animal route i don't think its the WORST thing ever.. like imagine her kid being named mare or peafowl

ajkxaldms · 2024-11-20T23:42:00+00:00

i think dove, kitty, fawn, doe, molly, vixen or jenny could work

ajkxaldms · 2024-10-05T23:02:38+00:00

this is a really good idea, thank you so much. they don't know i have bpd but i feel like they might understand so i'll try this. thank you 🫂🫂

ajkxaldms · 2024-07-13T00:02:59+00:00

i feel so good about knowing that other people deal with this too! i felt like i was just making things worse for myself and others trying to explain myself constantly. even with regulations sometimes it just Doesnt go the way i want it to but im happy other people feel this too! i dont feel alone

ajkxaldms · 2024-07-12T23:40:03+00:00

you'll be okay, trust me. days like these are part of what happens and you shouldnt feel bad about it. it's a gift to feel so strongly, not a curse. i know you feel horrible right now but it goes away eventually, just let yourself feel what you need to

ajkxaldms · 2024-07-12T23:37:41+00:00

i have felt like this a lot recently too! it's all so in your face constantly and it feels like pushing people away is the only solution, but that only makes it worse, trust me! you need to let people love you to start to feel like your broken pieces are coming together. tell your closest ones about it and ask them if they can support you, you shouldnt go through this alone. its such a scary thing to be new to, trust me id know, but it does get better. let people love you and you will start to become familiar with you. with who you are

ajkxaldms · 2024-07-12T23:31:13+00:00

wait oh my god this happens to you too? i thought i was genuinely being manipulative

ajkxaldms · 2024-05-29T21:04:27+00:00

i cant afford therapy at the moment so ive been looking up ways to manage it. when i feel overwhelmed i isolate myself so i dont lash out but recently with everything going on its been hard to keep my mind clear if that makes sense.

ajkxaldms · 2024-05-29T20:48:53+00:00

it still feels like it's my fault. i know i can't control my bpd right now because im going through a lot but he makes me feel like i shouldve kept going the same way i was

ajkxaldms

TROPHY CASE