Amber

Leg function, can't hold phone bc hands going fast too.

Will update when can. Love y'all ❤️

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

New specialist minimally helpful in immediate term. Minimal options in near term (bc underlying health so bad). Some promising for long term care.

Dr almost fascinatingly appalled at my local health care system & basically told me to get to an ER in another care system. So that's fine. 🙃

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*

But also hospital could have actually cared for me. They only gave me fluids for a couple days & tried one nausea med & nothing else. Most recent Dr decided on its FND (grr, and also it's not) and basically just wanted me to leave.

Upside, it is more comfortable here at home at least 🙃

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.

Been admitted since Saturday. Headed home soon though 🙃

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. 🫠

Love this development for you so much ❤️

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*

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.

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

Pale white woman in a purple mask & hospital gown, attached to various monitors & lying in a hospital bed.

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

Thank you so much for sharing your experiences and the much needed well wishes

Ha, it didn't even register to me as being there.

I guess I can at least feel lucky I don't seem to be getting the headache too (*knock on wood*), as a couple of you mentioned that.

No. Pedialyte has sucralose in it, among other things I react to. I've been looking for a few years now & never found an electrolyte product I tolerate. Scratch is the closest I've come but my mcas reactions are too severe at the moment for the fruit & citric acid in theirs.

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 😫

Thanks for the info, glad it helped you

Thank you!

Ugh. I`m glad things are easing up now and hope your path fully to the other side is short and speedy. Good job, Dr K, your palliative care/bedside skills are superb!

Ooh, broken kneecap sounds super unpleasant. I'm glad the maintenance injections are working for you!

If you do not have an answer for the question I actually asked, could you please just not answer?

If you desperately think I should want or need to know whatever you want to tell me anyway, just ask if I want to hear it first.

Also, if you read the post, I literally never asked if you or anyone else thought I had worried myself into feeling sick, or for basic & largely useless advice like "treat your symptoms & keep a journal". If you don't have an answer for what I actually asked, please go away.

Fucking hell dude, if you think you are being helpful, you are not. My symptoms are very in line w/the common side effects of B12 shots. When they started is right in line w/every adverse reaction I've had to a med, injection, or supplement ever so maybe my mast cell disorder got things rolling.

Hey, do you know anything about me, my underlying medical conditions, my history of allergic and adverse reactions, the current state of my health, etc? No? Then don't come into the mentions of a disabled chronically ill person and say their health issues are psychosomatic.

Aha! That'd definitely explain a lot. Continued good wishes that you & your family get all the good care you might need :)

I'm glad you get taking-it-seriously reactions bc I literally get blank stares and providers asking me "what?" bc they have no idea what I'm talking about until I give in and say some variation on "what used to be called chronic fatigue syndrome"

📌

Bsky does this thing where it auto adds a link card, even if you just made a typo mid composing the post and fixed it. Unless you notice the card & delete it to it will stay even after the typo is gone.