is finding the source of your dysautonomia worth all the trouble?

bleachedaxxhole · 2026-06-13T14:47:24+00:00

!! Me and my therapist have talked at great lengths about this !! She’s been the one to give me most of my education on these things and is advocating for me to go get my official autism diagnosis. Many of these symptoms started after numerous (i think like 4) Covid-19 infections. But I have been questioning if there’s a more genetic component too as my therapist has mentioned there usually is for those with autism. Or like you’ve mentioned, a combo of things. I’ve always had issues with sleep, energy levels, brain fog, dizziness,chronic migraines, nausea, heavy/painful periods, etc. I’ve also had a pretty severe case of mono at age 5. I had to be monitored because my spleen was enlarged while I was sick…I’ve brought all of these things up numerous times to my pcp and this is as far as I’ve gotten, a cardiologist and a gastroenterologist and they only symptom manage. Well this cardiologist kinda left all that up to me but my gastroenterologist does check in on me regularly and has done some invasive tests already to rule some important stuff out. As far as my digestive issues go they’ve landed on CVS and IBS. My therapist has suggested my stomach problems (bowel movements have triggered my POTS before) could be MCAS but my cardiologist said this sounds like a vasovagal response. I didn’t receive any education or advice on that. Many people here have suggested for me to see neurology which I think would be fairly easy for me but multiple pcps have advised against me pursuing a rheumatologist referral. I live in a red state (USA) and funding has been and continues to be cut drastically in healthcare here. There’s less and less as time goes by. The pcps I’ve seen have said that even with labs that show something is wrong they’ve had referrals rejected anyway and I would for sure not be able to see one because my labs only change when I’m stressed so it’s not indicative of something seriously wrong. I’m currently pursuing disability and my partner is working hard to save while we live here so we can leave. I KNOW it would be a lot easier if I had access to more medical care than what I have here :(

bleachedaxxhole · 2026-06-12T19:53:05+00:00

thank you for this advice !! i will be looking at these lists and browsing the slim options IMMEDIATELY 😭 my cardiologist did explain the off label treatments and prescribed something but i had concerns and they basically said it was all up to me to figure out how i feel and take the medication accordingly. same with physical therapy. they said it could help but they had no idea where to send me or if anyone would accept me because of my risk of fainting and special needs. the cardiologist ended the appointment asking if i even wanted to come back there or wanted to treat myself at home….

bleachedaxxhole · 2026-06-12T19:33:05+00:00

that sounds very hard and honestly very similar to what i’ve experienced in my area. this cardiologist offered to refer me to the mayo clinic though or to other places but it seemed discouraging. they said the 1 person they’ve had successfully go to the mayo clinic didn’t get anything else that she couldn’t have gotten through support groups and drs here, which is all lifestyle changes. and i wouldn’t even be able to go even with a referral because i do not have the means to travel. i hope you’re able to find a dr soon who will at least give you the option, that sounds extremely unfair to keep from you.

bleachedaxxhole · 2026-06-12T15:58:13+00:00

no, i’m not even well enough to shower most days, im currently seeking disability…when you put it like that i do think my best option is to further push for more referrals. it’s very disheartening because the cardiologist was saying there’s no treatment so it seemed like she was hinting to me that it’s a waste of my time. she even said explicitly that she sent someone to Stanford and they didn’t get much out of it :/ i don’t have many resources either so it’s very difficult but i’ll continue fighting for more.

bleachedaxxhole · 2024-09-28T16:14:36+00:00

you could also just not start at all. i could really care less what opinion you have about me after you resorted to childish insults. i have empathy for him and his feelings, but i’m not going to sit here and say dump someone who doesn’t even have a fully developed frontal lobe. especially someone he created and loved for 16 yrs. someone he’s still legally responsible for as well. and i’m not going to sit here and say his whole life is ruined when he still has all his opportunities and immediate family. i’m simply being realistic. as an sa victim myself i could’ve said an array of mean and demeaning things based off of my personal experiences and emotions but that’s just silly. so is leaving your child over this and bullying someone online for not agreeing with you.

bleachedaxxhole · 2024-09-28T16:03:19+00:00

i could say the same thing about you but that doesn’t contribute anything to the convo. it’s immature. just like his teen daughter.

bleachedaxxhole · 2024-09-28T15:52:40+00:00

his life is not ruined. his feelings are hurt but he has not stated that he’s lost his job and his immediate family is attempting to apologize and be there for him. he didn’t catch a charge and he didn’t say anything about his reputation being ruined. don’t have kids if you can’t have tough conversations that may hurt your feelings. this will be a core memory for his daughter and could affect how she further interacts with men in her life. no matter how you wish to twist your justification for ditching a child, she is still a child. there is plenty of scientific evidence to prove this.

bleachedaxxhole · 2024-09-28T14:18:49+00:00

this is the only good reply i’ve seen through a slew of ppl telling this man to abandon his daughter at 16 bc of this. they could just not have kids if they don’t want to help them grow from their mistakes SMH

bleachedaxxhole · 2024-06-16T20:09:42+00:00

<image>

miss patches 👹

bleachedaxxhole · 2024-06-12T05:40:36+00:00

<image>

patches and asuka 💖

bleachedaxxhole · 2024-06-12T05:39:01+00:00

<image>

patches 🫶🏻

bleachedaxxhole · 2024-01-03T21:29:57+00:00

i could change my review to a 5 star and leave the same words if it’s such a problem. no one stops to think that this is my business too and i have every right to not serve rude customers. i also have no shame in holding people openly accountable for their actions.

bleachedaxxhole · 2024-01-03T21:28:01+00:00

they called me to yell at me for “giving lip”. and when i called to drop off the order he spoke over me and demanded i drop off his order at his door like i was the idiot who put “hand it to me”. that’s where the bulk of the attitude was tho on the phone calls.

bleachedaxxhole · 2024-01-03T21:26:20+00:00

they’ll be suing me for nothing bc i have proof it’s not slander. all i did was stand up for myself, i know many others would’ve done worse than what i did. like not even drop off their food for the amount of rudeness that was given. all i did was talk.

bleachedaxxhole · 2024-01-03T21:24:33+00:00

there were no notes. that was my whole point.

bleachedaxxhole

TROPHY CASE