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Cas ✨ SnapCracklePoppies
@snapcracklepoppies.bsky.social
🥄 Medical Hot Mess with too many acronyms 🦓 Book lover • ARC reviewer • Monster romance enthusiast • Writer • Geology & Climate Science nerd • Still Masking 😷 🌈 Queer AF | she/they
163 followers354 following257 posts

Hey #NEISvoid goers, y’all have any last minute advice for port* placement?? Tips on sleeping with it, anything I definitely should or shouldn’t do, that kind of thing. None of my medical profs have said /anything/ so other than peer advice I’m going in blind 🫠🙃 *single lumen portacath

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You know you have #EDS when… You sublux your elbow adjusting your pillow at an odd angle 😐 . Bonus! Now your ulnar nerve is burning down into your hand… which I’m sure is co-morbid SFN related. Yay 🫠

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They called yesterday and it’s scheduled for in two weeks, but the second I got off the phone I felt like I was going to puke the anxiety/PTSD response was so intense. I spent all of yesterday alternating between that feeling and just rage & disbelief towards the specialist. I hate this.

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After the exchange I had with the dysautonomia specialist yesterday, I really am battling with feelings of regret re: agreeing to the port — I know I need it to continue the IVIG, but I’m scared it’s going to be a wasted procedure because of her attitude. I have so much medical trauma already…

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🤯

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🫠 This whole thing is exponentially infuriating because if I didn’t need insurance to cover it, I could go to one of those rich people “drip bars” and get hooked up to IV saline just for funsies like they do when they have a hangover or want to improve their skin or whatever!

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… wait this is actually a thing? I’m not just imagining it? I have been trying to figure out why the hell it seems like my tongue doesn’t fit anymore and I keep getting bite sores all along the sides and this whole time it might be related to MCAS and long Covid?! 🫠

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Adding a screenshot for context and because this is so wild I’m sure there are people that will claim the doctor didn’t say that. It is cropped for privacy reasons but you can see the reply and the use of the word addicted without the personal information being shown.

A screenshot of a medical portal message with the doctor saying “the concern is that you can get “addicted” to IV fluids, which makes it difficult to come off them” with my (the patient) reply being “I’m not sure how it would be any different than the risk of dependency that I currently will have getting fluids weekly with the IVIG anyway. I guess it’ll be…” the message is cut off but is irrelevant.
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To the IV fluids. I asked how it was any different than how I’m currently getting IV fluids with every infusion and have not gotten any response.

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That is exactly what my best friend said 🙃 like are we seriously quoting dystopian movies to deny patient care now? Is that where we are at?

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CS
Cas ✨ SnapCracklePoppies
@snapcracklepoppies.bsky.social
🥄 Medical Hot Mess with too many acronyms 🦓 Book lover • ARC reviewer • Monster romance enthusiast • Writer • Geology & Climate Science nerd • Still Masking 😷 🌈 Queer AF | she/they
163 followers354 following257 posts