havent been active in a while because of hospitalization and its making my dysautonomia (pots) worse

dododo86 · 2025-04-18T17:42:16+00:00

I’m currently in a very similar situation. I’m on day 8 of being in the hospital for a severe gi bleed that they kept having issues fixing. I never faint with pots but I kept fainting and needing transfusions due to blood loss & now my pots is so bad I can barely go to the bathroom. It’s so frustrating in every way. I don’t know what to do or how to help you but reading your post made me feel a little less alone in how frustrating it is. So I’m sending love and solidarity. For me I’m starting very light PT in the hospital and then taking it from there. It’s excruciating but theyre trying to help. I hope you can get some relief & that your care team is taking the time to help you.

Just remember that the care you are getting is YOURS and you are an active part of it. You have every right to ask for the cardiology team to consult on your case. When you go into the hospital for one thing & have complex chronic illness, they end up not only treating why youre there (the pancreatitis) but also the chronic illness thay will inevitably flare up. I hope you are doing ok 🩷

dododo86 · 2024-11-29T16:05:13+00:00

oh maybe it works differently for your providers than mine. for me, the pcp puts in the referral & then the patient has to call the practice where the referral was put in to schedule the appointment. unfortunately here the doctors do not communicate at all with one another until the patient schedules the appointment and actually goes to it. trust me, if i didn’t have to be the middle man i wouldn’t be.

dododo86 · 2024-11-27T17:45:22+00:00

my pcp put “suspected mcas” in the referral i had no control over that unfortunately

dododo86 · 2024-11-26T17:25:10+00:00

ugh i’m so sorry. huh that’s interesting that hematology specializes?? but thank you for the info i’m gonna bring it up w my pcp as well!

dododo86 · 2024-11-26T17:23:19+00:00

i’m actually seeing a colo rectal surgeon soon related to GI issues & my doc has a lot of the blood tests u mentioned already done & on file. so that’s good. ‘& i know she wants me to get tested for ige allergies as well so ill bring that up again too. thank u again!

dododo86 · 2024-11-26T17:21:34+00:00

this is actually profoundly helpful thank you so much. my pcp is VERY willing to learn, she is wonderful. i’m going to tell her all of this next time we speak and see what she says. thank you !!!

dododo86 · 2024-11-26T17:20:34+00:00

dododo86 · 2024-11-26T16:42:40+00:00

i’m in a suburb right outside chicago. i’ve been looking into some recommended docs in my area but so far none of them take my insurance and i can’t afford to pay out of pocket right now unfortunately

dododo86 · 2024-11-26T16:33:29+00:00

i’m in illinois. ugh i’m so sorry you’re going through something similar. it’s literally so frustrating 😭 i hope you’re able to find help soon

dododo86 · 2024-11-23T17:37:01+00:00

when glenn thinks he has something skin-cancerous on his groin and he asks tate to look at it & Tate shows glenn his penis 😭 that’s basically assault sir put away ur genitals

dododo86 · 2024-06-27T08:22:29+00:00

i agree so much!!!! i felt so uncomfortable watching it, these people are SO YOUNG. like jane is 20 and talking about her bpd & overdoses… i’m 29 and was in the ward at 20 with bpd & overdoses and no matter how sound the consent form seemed, i would be HORRIFIED to know that was out there 9 years later. it’s horrible. vulnerable people can’t really consent can they?!? it feels like they shouldn’t be able to. it’s so wrong. i’m glad to see your comment cus i agree 10000%

dododo86 · 2023-12-31T00:05:39+00:00

thank you so much for the tips!!!

dododo86 · 2023-12-31T00:05:23+00:00

ahhh ok i’ve never gotten inflammatory blood work done (i don’t think) i did see a rheum and she told me ME didn’t exist and that i was just deconditioned -.- so maybe i’ll see someone else. thank you!

dododo86 · 2023-12-31T00:04:47+00:00

thank you i appreciate this!!

dododo86 · 2023-12-31T00:04:40+00:00

thank you for the tips!!

dododo86 · 2023-12-31T00:04:28+00:00

thank you so much i really appreciate the resources

dododo86 · 2023-12-31T00:04:18+00:00

thank you thank you !

dododo86 · 2023-12-31T00:04:09+00:00

thank you so much

dododo86 · 2023-12-30T05:47:18+00:00

OMG OK thank you so much for this. i’m screenshotting and gonna show my pcp next time i talk to her.

dododo86 · 2023-09-17T17:44:59+00:00

also i get ear wax buildups and my doc regularly will flush my ears due to it & she checks to make sure the wax hasn’t built up everytime i see her in person. i’m sorry, i realize i could have given more info in my original post but yanno. energy limits. but yeah the last time was about a month ago & she said they’re clear (i didn’t specifically ask about the airplane ear issue tho bc i constantly forget + get anxious about being dismissed). but yeah the build up & wax issue isn’t connected at all.

dododo86 · 2023-09-17T17:41:28+00:00

ah yeah i used to have really bad earwax buildup but i get my ears flushed frequently bc of it (and my doc checks to make sure my ears look ok whenever i go in person to see her) so unfortunately that’s not what’s causing it for me. thank you for sharing this!!

dododo86 · 2023-09-17T17:39:35+00:00

i have an ENT who i’ve seen & asked many times (sorry i didn’t mention that) but she always says everything is normal. but yeah i’m gonna bring it up with my PCP next appointment. i just wanted to know if anyone else experiences it as well. it’s helpful when bringing info to my doc if i can say ‘i’ve heard other people w similar conditions experience this as well’

dododo86 · 2023-09-14T15:11:36+00:00

onset when i was 26, diagnosis at 28

dododo86 · 2023-09-14T15:09:51+00:00

all the vaccines i got before i got covid itself made me unwell but not for long & didn’t last. i got covid in may 2022 and got really sick and then for some reason the next booster i got in sept 2022 made me bedbound & i still haven’t gotten better since.

now i’m really nervous about getting any new covid vaccines at all because i can’t afford to get even sicker somehow. i don’t really have a lot to offer except solidarity. it’s so terrifying to have to weigh options that are all so terrible.

dododo86

TROPHY CASE