Amber
@aschmugge.bsky.social
Occasionally misplaced Minnesotan. (she/her)
Hi, nice worried ppl. Still alive, very sick. Finally got ambulance transferred out of town & am in a neuro icu. No real peg function
January 26, 2025 at 7:33 AM
Hi, nice worried ppl. Still alive, very sick. Finally got ambulance transferred out of town & am in a neuro icu. No real peg function
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.
January 18, 2025 at 5:43 AM
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.
*cries in extreme pain, sickness, misery*
January 17, 2025 at 7:12 AM
*cries in extreme pain, sickness, misery*
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.
January 17, 2025 at 12:48 AM
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.
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. 🫠
Go, American healthcare system. 🫠
January 16, 2025 at 8:53 PM
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. 🫠
Go, American healthcare system. 🫠
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*
And I still need to somehow be in Iowa on Fri to see the mcas immunologist.
*cries in hospitalized w/non-knowledgeable doctors*
January 14, 2025 at 2:53 PM
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*
And I still need to somehow be in Iowa on Fri to see the mcas immunologist.
*cries in hospitalized w/non-knowledgeable doctors*
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.
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.
January 13, 2025 at 11:52 PM
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.
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.
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
May not be able to respond, but thanks.
#NEISvoid
PS. Thinking kidney/UTI infection maybe, if it matters vs others
January 13, 2025 at 12:53 AM
First chronic illness hospitalization. Do I win some sort of prize? Maybe a plaque or a new Lego set?
January 11, 2025 at 11:33 PM
First chronic illness hospitalization. Do I win some sort of prize? Maybe a plaque or a new Lego set?
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 😫
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 😫
January 10, 2025 at 6:35 AM
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 😫
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 😫
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.
I suspect not eating nor eating things making me gag is going to help my situation right now.
January 9, 2025 at 7:41 PM
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.
I suspect not eating nor eating things making me gag is going to help my situation right now.
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.
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.
January 9, 2025 at 5:43 PM
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.
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.
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 🫠
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 🫠
January 9, 2025 at 7:47 AM
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 🫠
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 🫠
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.
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.
January 8, 2025 at 10:09 PM
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.
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.
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.
They should get $1. And a gold star.
January 8, 2025 at 7:31 PM
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.
They should get $1. And a gold star.
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
- 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
January 8, 2025 at 7:03 AM
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
- 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
I'm legitimately scared to even let myself be the tiniest bit relieved or get my hopes up that this will actually happen. I'm too desperate and too many things have gone wrong in the last 6+mo 🙃🫠
Just got an earlier appt with the MCAS immunologist off their wait list. Next Friday instead of Feb 14.
Not a single clue how the fuck I'm going to get to Iowa as I'm rapidly losing function in my arms too & am in much worse shape than even few days ago, but I couldn't not take it.
Not a single clue how the fuck I'm going to get to Iowa as I'm rapidly losing function in my arms too & am in much worse shape than even few days ago, but I couldn't not take it.
January 7, 2025 at 5:34 PM
I'm legitimately scared to even let myself be the tiniest bit relieved or get my hopes up that this will actually happen. I'm too desperate and too many things have gone wrong in the last 6+mo 🙃🫠
Just got an earlier appt with the MCAS immunologist off their wait list. Next Friday instead of Feb 14.
Not a single clue how the fuck I'm going to get to Iowa as I'm rapidly losing function in my arms too & am in much worse shape than even few days ago, but I couldn't not take it.
Not a single clue how the fuck I'm going to get to Iowa as I'm rapidly losing function in my arms too & am in much worse shape than even few days ago, but I couldn't not take it.
January 7, 2025 at 5:22 PM
Just got an earlier appt with the MCAS immunologist off their wait list. Next Friday instead of Feb 14.
Not a single clue how the fuck I'm going to get to Iowa as I'm rapidly losing function in my arms too & am in much worse shape than even few days ago, but I couldn't not take it.
Not a single clue how the fuck I'm going to get to Iowa as I'm rapidly losing function in my arms too & am in much worse shape than even few days ago, but I couldn't not take it.
Woke up way too early this morning & couldn't get back to sleep, which means it's only 9:45 and I've already had 90+ more minutes of torture than I can handle today and fucking hell life is goddamn awful right now.
January 7, 2025 at 3:48 PM
Woke up way too early this morning & couldn't get back to sleep, which means it's only 9:45 and I've already had 90+ more minutes of torture than I can handle today and fucking hell life is goddamn awful right now.
$350 to share a damn nice* full 4-bed house w/three other girls in 2003. My first solo 1-bed apartment in 2005 was $525 & kind of expensive for the time.
(*Beautiful 2 story + finished basement place in Mac-Groveland for the MSP knowledgeable; so much original woodwork, floors, built-ins there 👀)
(*Beautiful 2 story + finished basement place in Mac-Groveland for the MSP knowledgeable; so much original woodwork, floors, built-ins there 👀)
Rent was how much when you got your first apartment…
January 7, 2025 at 5:01 AM
$350 to share a damn nice* full 4-bed house w/three other girls in 2003. My first solo 1-bed apartment in 2005 was $525 & kind of expensive for the time.
(*Beautiful 2 story + finished basement place in Mac-Groveland for the MSP knowledgeable; so much original woodwork, floors, built-ins there 👀)
(*Beautiful 2 story + finished basement place in Mac-Groveland for the MSP knowledgeable; so much original woodwork, floors, built-ins there 👀)
Everything is awful and we all just had the first Monday of the year, so I shall grace you all with the time I went hiking in a rain forest and channeled Violet Beauregarde by putting my poncho on over top of my full hiking pack. 😂
That rain makes everything green & lush as fuck though, for sure.
That rain makes everything green & lush as fuck though, for sure.
January 7, 2025 at 1:01 AM
Everything is awful and we all just had the first Monday of the year, so I shall grace you all with the time I went hiking in a rain forest and channeled Violet Beauregarde by putting my poncho on over top of my full hiking pack. 😂
That rain makes everything green & lush as fuck though, for sure.
That rain makes everything green & lush as fuck though, for sure.
I think I'm dying. Like, maybe not in the next day or two. But all I think it'd take is another of the frayed embroidery floss strands holding me together to go and that'd be it.
The drs are talking see specialists in (weeks, months), have some MRIs (eventually), and I don't think I have either.
The drs are talking see specialists in (weeks, months), have some MRIs (eventually), and I don't think I have either.
January 6, 2025 at 10:39 PM
I think I'm dying. Like, maybe not in the next day or two. But all I think it'd take is another of the frayed embroidery floss strands holding me together to go and that'd be it.
The drs are talking see specialists in (weeks, months), have some MRIs (eventually), and I don't think I have either.
The drs are talking see specialists in (weeks, months), have some MRIs (eventually), and I don't think I have either.
😭
If you’re disabled and struggling right now… please know you’re not alone.
Know that you shouldn’t have to beg for medical care. You shouldn’t have to grovel for love or support. You shouldn’t have to fundraise for basic needs.
You shouldn’t have to feel guilty for being sick
Know that you shouldn’t have to beg for medical care. You shouldn’t have to grovel for love or support. You shouldn’t have to fundraise for basic needs.
You shouldn’t have to feel guilty for being sick
January 6, 2025 at 4:10 AM
😭
If what is so horrifically wrong with me /is/ the B12 deficiency, then there is like a 1% chance I'm going to get real medical care for it here, and a 0% chance I can manage the complicated treatment (or the scary side effects) on my own, especially with no mcas care and a total inability >
January 6, 2025 at 1:36 AM
If what is so horrifically wrong with me /is/ the B12 deficiency, then there is like a 1% chance I'm going to get real medical care for it here, and a 0% chance I can manage the complicated treatment (or the scary side effects) on my own, especially with no mcas care and a total inability >