cpucontrolledpartymember

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A real life example of using mobility aids making other people comfortable to use them themselves in my life, is me using mine and my mom following.

Like, my mom has a lot of health issues and should really be using aids all the time. But she's really stubborn and believes all the stigmas, so she never would use any.

Then I started to use a cane occasionally and she started talking about using one. So I got us matching canes, and now she uses it often. She'll brag about it to me too. Like I'll walk in and she goes "I used the cane you got me while I was at Disney this weekend. It was really helpful"

Today I decorated my plain black cane with stickers and brought it in to show her and now she's all excited because she wants to put stickers on her cane.

Anyway it feels nice seeing her finally feel comfortable with using a mobility aid to get around.

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Love referring to my disabilities as “the curse” and my symptoms as “the demons.”

Sorry, I can’t come, the demons (being an eepy little guy) require my attention (nap time) on account of the curse. (chronic fatigue)

Yeah, no, the demons (hypermobile ankles) decreed that I cannot wear heels anymore, on account of the curse. (connective tissue disorder)

I can’t stand up to fast or the demons (heart rate spike) will steal my vision. On account of the curse. (POTS)

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Obligatory "this is not a sponsored post" but i love these Dr. Motion compression socks.

It's SO HARD to find compression socks that are pretty like this and affordable. Floral socks like this are my very favorite. I have so many floral socks but this is the first time i've seen compression floral socks so i bought some immediately.

I also like that i don't dislocate my thumbs putting these ones on. The ones from Crazy Compression are hard to pull up and honestly not as pretty as these.

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"Say you want to live!"

I know it's hard right now. I know it seems bleak. But that doesn't mean we give up. That's what they want.

Take care of yourself. Take care of each other. Do what you need. Keep doing what brings you joy. I'm not even asking you to fight. I'm only asking you to live.

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every day living with my disabilities is just an endless refrain of “the world does not treat me gently so i must treat myself gently, even when it’s hard” and i must never ever forget that

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Magic mirror

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I forgot to post this before. Look at the costume i made my cat!

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I made this hat a few years back and every now and then it gets pulled out of the dust to be worn on Halloween or a Ren faire

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People who have regular body heat don't experience cold the way we do. They apparently have this little heater inside of them that just, keeps their blood and internal organs comfy all the time. Being "cold" to them is just a chill on their skin. "If you're still cold after the first layer, put another layer on!" That doesn't work if you don't have the body heat to warm up those layers!!! it's just cold fabric on top of cold fabric on top of cold fabric on top of cold skin on top of cold fat on top of cold muscle on top of cold bones.

Then of course, even if there are FINALLY enough layers to make our skin warm. That does not mean it will make our bones warm. I could have an electronically heated blanket on me, and start sweating from it, and STILL BE COLD because it takes a lot of time for any amount of heat to pierce the surface level of my body & warm me in any ways that matter. So yeah, anytime you're interacting with somebody who doesn't have temperature regulation issues, and they offhandedly mention that they love the cold, just be aware they are never ever talking about our kind of cold. the kind that feels like an uphill battle. They're talking about something completely different and unique to them and their little internal heater. something some of us may never experience because we're always trapped in that fight with the air around us.

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Just because you can stand up, doesn’t mean you should. If standing up right now will make everything worse & what you need to do is rest, then rest.

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This was San Japan day 1.

Thank you everyone who complimented my cosplay while i was around!

Cape/skirt/belt are from dokidoki cosplay

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Actual image of me once the con ends

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My take on Perona's hair. She has curly hair, her bangs should curl too! It was a hit at the con

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