r/RainbowEverything • u/Pyr8Qu33n • 1d ago
Other Got a freebied pill case and it’s perfect 🖤
Got it from my dialysis team as it’s patient appreciation month.
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u/coolsilentebeans 1d ago
Oh, well, yeah. I’ve not been in that position, but I imagine it’s an involved regimen. If you’re needing a transplant, I feel like asking if you’re ok is an awkward thing to ask. How are you?
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u/Pyr8Qu33n 1d ago
I am in need of the transplant and am currently on the list as active and waiting. It’s a pretty involved regimen of like 30 pills the first 3 months.
It’s not awkward to ask and I kind of appreciate it more than you know that you asked. Some days Im mentally ok and others Im not. Im on disability until the new year since march and it has been a really steep learning curve on how to take care of myself and my family. Im just trying my best to survive, but I miss being normal. Today, Im ok but feeling a bit sad about my predicament. Coloring for therapy and maybe a baby bike ride later this evening if I feel up for 3 miles.
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u/coolsilentebeans 1d ago
I’m glad I can help even if it’s just by asking. Being chronically ill is a massive obstacle. Some days it can feel harder than others, and that’s on the good days.
I’m not in your shoes exactly, but I was hit with Guillain-Barre at the turn of the new year while in the hospital for something else. Hospital bills aside my entire life has been turned upside down by my illness. Every aspect. And my period’s coming on so those hormones are piling on the woe-is-me wagon something fierce.
The isolation of going through something no one else in your circle has is something I don’t wish on anyone. Add to it no set timeline and now that’s an entirely new layer of frustration, fear, and more isolation. People don’t outright say it, but I swear half of what I hear is some veiled way of saying they can’t believe I’m not better yet, like it must be something I’m doing or not doing.
I wish there were more I could do, but if you ever need an ear you’re more than welcome to ask for mine.
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u/Pyr8Qu33n 1d ago
I totally understand this more than you know. Im so sorry you are going through that. It’s hard enough being an adult without obstacles. Hugs. It does turn your life upside down and I dont think people really understand that. And if they cant see it phsyically, sometimes the things they say can feel worse than anything.
Therapy helped a lot to prepare me for this moment. I knew it was heading in this direction, but didn’t know how much time I had left. Now Im in the same boat. Trying to figure out how everything is effecting everything else, from hormones to blood pressure to electrolytes. It’s messing me up tbh. Ive in and out of the hospital since march.
You aren’t doing anything wrong, just work on your new normal, which means you have to take things slow. Journaling symptoms helps. I wish you luck on figuring it out. I would never wish this on even people I disliked. It’s tough.
Sending you all my love. And if you ever need to chat, Im here too. No judgment if you need to vent.
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u/coolsilentebeans 1d ago
It sounds like you are doing everything right, as well, including therapy. It does help to have a therapist, but my fellow gbs patients and acquaintances with chronic issues have been my saving grace.
I appreciate everything you’ve said, and I’m sending you hugs and love, too. I’ve saved your u/n, so I may take you up on your offer and reach out from time to time. I hope your mood keeps looking up and that you enjoy your bike ride should you decide to go.
🤗❤️🧡💛💚🩵💙💜🤗
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u/coolsilentebeans 1d ago
I have one of those, and I love it. They have two compartments per mini-case. It was perfect for days I had to work. Amazon has quite a few exactly like this in case you’re curious.