aschmugge.bsky.social
Occasionally misplaced Minnesotan. (she/her)
4,995 posts
750 followers
232 following
Regular Contributor
Active Commenter
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Leg function, can't hold phone bc hands going fast too.
Will update when can. Love y'all ❤️
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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. 🙃
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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 🙃
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Been admitted since Saturday. Headed home soon though 🙃
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Love this development for you so much ❤️
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Thank you so much for sharing your experiences and the much needed well wishes
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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.
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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.
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Thanks for the info, glad it helped you
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Thank you!
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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!
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Ooh, broken kneecap sounds super unpleasant. I'm glad the maintenance injections are working for you!
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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.
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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.
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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.
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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.
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Aha! That'd definitely explain a lot. Continued good wishes that you & your family get all the good care you might need :)
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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"
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📌
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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.
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Yeah, it seems to have very rapidly spiked GI issues & profound nausea, big increase on my nerve pain & weakness, fatigue, and anxiety. Which per the internet reads more like "normal people side effects" vs mcas reaction at least. Still enough I can't travel though, which is frustrating.
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> bc it's for an MCAS immunologist and I can't safely eat, breathe, or supplement anything without getting some MCAS care & meds again finally. I just don't know if I should expect to feel even worse next round, or for how long each time (even assuming it doesn't cause probs with other levels).
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Yeah, I suspect I'm going to have to do a lot of studying & self-directed management of this as I move forward; appreciate your expertise. But I don't think any of it probably urgently applies today, barely 24hrs after the first shot?
Mostly I just can't risk not being able to travel next week >
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Thanks. My electrolytes were fine when I got the shot yesterday. I reacted in <15min and feel worse today. I can't tolerate electrolyte drinks, etc.
I'm mostly just asking my question bc I need to schedule shot #2 next week but also have to travel out of town on Thurs & not sure how to work that 🤷♀️
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Things have been *a lot* and globally we've all been under a huge amount of stress for a really long time now without respite. It is understandable to get overwhelmed, sometimes unexpectedly. All the hugs and love to you, my dear. Do whatever you need to do to take care of and protect yourself ❤️❤️
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Is that reversing thing basically where you get sicker before you get better?
But yeah, my local health care system is not going to be much help here as they think it's a simple "get a shot or OTC pill & no one ever reacts" after letting my numbers fall so low I'm having severe neuro impacts :/
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I have in fact reacted to everything injected in me since I reacted to my first mRna shots in early 2020, even things fine for decades like flu shots 🙃
I'm down for a "replace all my broken body bits" experiment though, why not. (I think this is 75% common B12 side effects + 25% MCAS nonsense)
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You are much calmer about your furry little roommate(s) than I would be!
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Nah, there is only one Potato Museum, I'm nearly 100% positive ;)
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I think their's was actually named Spud & may or may not have stayed with the kennel? I also may have messed up my puppy identification, the pics are a few years old :)
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This is all so colorful and lovely! I've enjoyed your photos & stories, thank you for sharing your trip :)
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Very fair. I've never had a newer Apple device, so it remains peak tech (er, sort of) 😂
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Ooh, they're both good but I think go for the darker ones! You've got a great eye. I'd love to be able to redecorate with my own color style :D