iiinova — where your digital self keeps evolving

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.

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.

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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

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Amber @aschmugge.bsky.social · 08/01/2025

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 🫠

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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.

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Amber @aschmugge.bsky.social · 08/01/2025

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.

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Amber @aschmugge.bsky.social · 08/01/2025

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

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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 🙃🫠

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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.

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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.

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$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 👀)

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Amber @aschmugge.bsky.social · 06/01/2025

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.

A person is standing on a wooden footbridge in a wet green forest. They have on hiking boots, leggings, and a bright coral jacket underneath a violently purple poncho that is sticking out around them like a big bubble. The overall effect is a bit "I've been turned into a blueberry".

Lush pink (maybe orchids?) dripping with drops of the recent rain, against a background of green leaves.

A small rushing waterfall, tumbling over mossy rocks.

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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.

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Amber @aschmugge.bsky.social · 06/01/2025

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 >

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Anyone ever dealt with feeling like they're about to gag all the time, with nausea & a constant bad taste in their mouth? Did anything help or did you ever figure out why? Bc my pain is on the edge of unbearably extreme, but it's this gaggy nausea thing that makes me want to blow my brains out.

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Slept for 10.5hrs, not that I can tell. Took 45mins to be able to sit up in bed. Another 15 before I could get down the hall to use the bathroom. And now I've just been sitting on my bed for 25mins trying to muster the tolerance to get dressed. I just need things to be a little easier, you know?

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Why do some people get to be healthy and I get to constantly discover new levels of "sickest I've ever fucking felt" plus "worst pain I've ever been in" plus being goddamn scared out of my mind half the time? I've done my turn. Make it stop make it stop make it stop make it stop make it stop 😭

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Oh god, I feel so sick. I did not need this particular set of symptoms to get worse on top of the extreme pain & near inability to walk, thanks anyway body. I can't believe I have to get through another 6wks* before I can maybe get help because I fucked up going yesterday. 😣 *and still get to IA

My last 6mo: Almost every food I see someone cooking, eating, in a video, fast food commercial, posts online, etc = Amazing, fantastic, sounds like the best thing ever, 10/10 would go to town on that, tell me more, show me how to make that Any food I can actually eat = *literally gags* 🙃

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First day in weeks I could have done nothing but rest. But no. I decided to strip the bed (still haven't fixed that, oops) and start my laundry (holy fuck stairs are the devil) instead. 🤦 But we're creeping pretty fast towards night and I hope y'all are having a good weekend so far.

Sunset photo with silhouettes of trees along the bottom, the sky tinged in orange and yellows right above, and then steadily fading into blues and purples and getting darker as you move up the image.

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Seeing this make the rounds, so just want to point out...based on the profile pic it's likely this is more about being a POC who was asked/expected to perform a service for a white woman (when she could've asked an employee) than about a stranger asking tall person for help.

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Realized my nerves are so fucked up I keep hyperextending my knees when walking. Good news! Knee braces help my stability *a ton*. Bad news! After ~10m pressure from the braces hurts like hell. Also these were too small last time I wore them & today they're too big even over heavy sweatpants. 🫠

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Urgent care: Waited 45m to see the Dr for literally 5min in which he said "not my job" but did I want gabapentin for my neuro symptoms escalating so fast that in a week & a half I've nearly lost the ability to walk? 🫠 Immunologist: Rescheduled...for Feb 14th 😣 Showers: Fucking evil bastards.

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Trying to find a silver lining & all I can think of is that after I drag myself to urgent care + showering after (stupid smelly cleaner they use), maybe I can just take a break for the weekend. For a value of "break" that includes feeling like death, forcing myself to eat, and chores, anyhow. 🫠

Yesterday I wrote one post about libraries & one political reply and today my new followers list is 99% a pile of "are you intentionally trying to look sketchy as fuck?". Yikes, folks. This trend on here is so unappealing, why would y'all voluntarily want to interact in this way/with that content.

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When I called to cancel this (😫), I mentioned to the librarian Catherine that a bunch of people liked the post & were praising rural libraries, and that for a couple of folks Sibley was their home town library & they remembered oreos at storytime. She got a kick out that. So, good job team.

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Fail. Rescheduling. They promise they'll squeeze me in w/o another 5mo wait. Going to urgent care instead. This is madness. Like 2% chance UC will know anything & nothing is likely to improve fast & still 110% believe the immunologist is the key to help. Fuck interstate telehealth restrictions 😭

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I'm so sick. I can't do this. I'm so sick. I can't not do this. I'm so sick. I can't do this. I'm so sick. I can't not do this. I'm so sick. I can't do this. I'm so sick. I can't not do this. I'm so sick. I can't do this. I'm so sick. I can't not do this. I'm so sick. I can't do this. I'm so sick. 😭

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There is absolutely no route to drive tomorrow that doesn't have 25-40mins between even vaguely possible places to stop. And none of those are places I can hang out (they're like tiny bars and municipal liquor stores). This alone reduces my odds of making it to Iowa by like 50%. 🙃

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Shout-out to the public library in tiny Sibley, IA (population 2,761) who fairly enthusiastically are letting me reserve their one private study room tomorrow so I can have my virtual appointment there. Libraries are so good.

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Nothing more frustrating than talking about serious, acute medical issues & the inability to access care with an abled person who has no fucking clue what ERs & urgent cares will actually do for patients, nor do they understand that "see another doctor" is a task that'll take months, minimum.

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I extremely need a new medical team but I don't even know where to start. Hope I can make it to the Cities, pick a random ER, and pray I don't get covid/rsv/flu? ERs just stabilize you, they're not going to investigate or treat me. And I'm still sick w/everything thats been going on since summer 😫

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Paul-Gabriel Wiener @wearshats.bsky.social · 01/01/2025

Guess I need a new neurologist too. 🙃 Who gets a patient w/paresthesia & allodynia that started overnight as moderate & mostly legs then a month later progresses over like 3 days to severe & over 98% of their body plus them rapidly losing the ability to stand & walk...and doesn't see it as urgent?

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Reposted by Amber

Let's start the year off right. @bibicosplays.bsky.social is an awesome human with some really cool stuff who deserves some love. I'm giving away 10 $25 gift cards to bibipins.com See something you like? Reply here and I'll draw winners in a couple of days. (Boosts appreciated but not required.)

Screenshot from the Bibipins store shows a variety of sliding scale pins. They're oval with a marker that can be moved to different positions. Pins include pain scale, fucks given, existential dread, pronouns, and others.

Screenshot from Bibipins shows compression socks, wrist braces, ankle braces, and compression gloves. Patterns include rainbow pride flag, lavender with cartoon bunnies, and stars on a purple nebula.

Screenshot from Bibipins shows pet gear including bow tie collars, leashes, and bandanas. They're available in moon bunny, galaxy, and pride flag colors.

Screenshot from Bibipins showing a backpack with cat ears and face and a bowtie. Available in light blue, black, or purple. The front pouch is transparent to show off your pin collection or whatever else you'd like. The backpack has shoulder straps, a top loop, and side straps designed to loop over wheelchair handles.

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Worked until 10p. Did nothing enjoyable today and still barely got 40% of the work I need done, and that's w/me scrapping plans to go tomorrow. 🫠 Absolutely no idea how it's even possible for me to get to this appointment on Friday. Even less idea how it's possible for me to survive if I don't.

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I am trying my best and unfortunately my best right now is very very insufficient.

Wanted to talk to a little IA public library about reserving their study room* for my appointment on Friday and guess how many times I've called today before realizing it's New Years day? 🤦 [*Yeah, totally scrapping my travel plans for a brute force there-and-back desperation trip instead. Sigh.]

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These doodads - usually called a silicone hair scrubber or scalp massager - work surprisingly well. A+ if you have any kind of hand/wrist/arm pain or strength & grip issues. Gives a good scrub and works shampoo & other products through thin/fine or thick or textured hair easily.

Pale blue silicone object with a bunch of small slightly-rounded spikes on one side and a handle on the other.

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