Profile avatar
aschmugge.bsky.social
Occasionally misplaced Minnesotan. (she/her)
4,995 posts 750 followers 232 following
Regular Contributor
Active Commenter
Posts 17 Comments 33

Hi, nice worried ppl. Still alive, very sick. Finally got ambulance transferred out of town & am in a neuro icu. No real peg function

submitted 34 days ago • 9 comments

Out of hospital for a scant 30hrs. Been in 2 states. Fallen 5+ times bc can't stand & have zero strength. Almost certainly done permanent physical damage to my mother. Eating & drinking still pipe dreams. In worst pain & health of my life, plus retching badly & feel horrible.

submitted 42 days ago • 1 comment

*cries in extreme pain, sickness, misery*

submitted 43 days ago • 3 comments

Back home. Holy fuck this is terrible. Medicaid won't pay for rehab or short term care facilities so the best I can do is this + apply for nursing care coverage- which will take weeks & most local facilities have already said no bc of my complex conditions or are full.

submitted 43 days ago • 1 comment

They're going to end up discharging me with no plan of care, feeling worse than when I came to the ER, and completely unable to drink, eat, or stand without huge assistance (I can't walk at all). Go, American healthcare system. 🫠

submitted 43 days ago • 8 comments

On the one hand, I was totally right I was about to lose the ability to walk (and also, now, stand). On the other hand, holy fuck I keep getting sicker & weaker. And I still need to somehow be in Iowa on Fri to see the mcas immunologist. *cries in hospitalized w/non-knowledgeable doctors*

submitted 46 days ago • 1 comment

Thankfully they seem wrong re:infection. So, next question.. Do you have experience with Reglan for nausea? Please share (the least graphic/scary version of your tale). Again, thanks : prolly can't respond to folks.

submitted 46 days ago • 0 comments

If any #EDS, #MCAS, #ME patients have some good advice re: antibiotics & what might be safer to start with or avoid or just how not get destroyed by them, I'd appreciate it here! May not be able to respond, but thanks. #NEISvoid PS. Thinking kidney/UTI infection maybe, if it matters vs others

submitted 47 days ago • 8 comments

First chronic illness hospitalization. Do I win some sort of prize? Maybe a plaque or a new Lego set?

submitted 48 days ago • 13 comments

Everyone else going to bed always makes being really sick 10x worse and scarier. Something about the artificial sense of being alone, plus all the hours of dark just looming in front of you. I can't do this level of sick again. Not when my legs are so weak I literally can't move when I need to 😫

submitted 50 days ago • 1 comment

The only foods that sounds like food are things I can't actually eat right now. My kingdom for being able to open a bag of chips or have a sunbutter & jelly sandwich. 😫 I suspect not eating nor eating things making me gag is going to help my situation right now.

submitted 51 days ago • 0 comments

When I was young, I'd daydream about having a house with a super cozy library in one of those Victorian turret rooms. As an actual adult, I'd instead do unspeakable things for a comfy place to rest in or near the bathroom. This hallway folding chair is killing me. Goddamn chronic illnesses.

submitted 51 days ago • 0 comments

If you had side effects from a B12 shot, could you tell me how long they lasted and if they got worse with your 2nd (or 3rd or 4th, etc) shots? Please be gentle in answers, no horror stories. I'm too sick & anxious to deal with that. #NEISvoid #MCAS #MECFS

submitted 51 days ago • 6 comments

Finally had a first B12 shot today. I am so deficient it might be killing me, so it had to be done. Doc confused by me asking questions re: side effects & bad reactions- "I've never had a patient w/a reaction" Me: Awake, anxious & miserable at 150am as I get sicker & sicker from...the B12 shot 🫠

submitted 51 days ago • 2 comments

My (delayed) contribution to the food discourse: Its 4pm & I haven't really eaten today bc I have to walk to kitchen, sit on a stool for 25min, & make it. I physically cannot. I'd kill to be able to order DoorDash. You don't know what people are dealing with, shut the fuck up about their choices.

submitted 51 days ago • 0 comments

Every time someone with chronic nausea, GI problems, complex allergies, or other food issues manages to eat something? They should get $1. And a gold star.

submitted 52 days ago • 1 comment

Every chronically ill person has two specific kinds of symptom piles: - truly horrific things which make you shrug and say "eh, it's Tuesday" and - a handful of specific things, often more benign, which make you want to cry for your metaphorical mommy

submitted 52 days ago • 0 comments