iiinova — where your digital self keeps evolving

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

010

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.

010

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.

110

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 😫

180

Thanks for the info, glad it helped you

110

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!

020

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

100

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.

030

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.

000

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.

200

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.

100

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.

040

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.

020

> 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).

030

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 >

220

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.

020

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 🤷‍♀️

240

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 ❤️❤️

000

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.

070

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 :/

220

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

6136

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)

010

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 🫠

2100

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.

090

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.

1788

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

0152

You are much calmer about your furry little roommate(s) than I would be!

Nah, there is only one Potato Museum, I'm nearly 100% positive ;)

040

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 :)

140

This is all so colorful and lovely! I've enjoyed your photos & stories, thank you for sharing your trip :)