My Rambles

Amber, 20, she/her, Pan, Mostly personal junk and nerdy stuff.

[psycho-psychology]

Something I've learned as a chronically ill preschool teacher:

If I send a kid home sick, I'm taking a Lysol wipe AND the bleach water solution we already use to every hard surface in the classroom. One kid gets sick, others get sick, then I get sick worse. Not trying to deal with that. Therefore, bleach water and Lysol EVERYWHERE.

[psycho-psychology]

It's already in my description, but I'm putting this here for national coming out day.

[psycho-psychology]

I went to the geneticist today who initially diagnosed me with EDS last year. He recommended some light exercises to strengthen my muscles to help with the subluxations, and he arranged for me to do a tilt table test because I have most of the symptoms of POTS except for syncope. Now I have to wait to hear from the dysautonomia clinic for that, and see my eye doctor on the off chance I might actually have Stickler syndrome, but we’re pretty sure that’ll come back normal because I fit the description for hypermobile EDS than Stickler syndrome. So we’re on track to figuring out what the heck is going in with me.

[psycho-psychology]

Question for other deaf and HOH people:

Do any of you (especially those who can't lip read) tend to interrupt a lot because you don't notice the pauses in conversation or hear them at the wrong time? I've noticed as my hearing loss has progressed over the years that if I'm not wearing my hearing aid (which I haven't been since starting this new job because I work with toddlers and they're super loud) that I tend to interrupt because my brain processes a pause for a breath as a pause for a response. Like, it's genuinely caused me not to talk in some situations and people to think I'm not social because I'm so worried I'll interrupt the conversation.

[psycho-psychology]

Me about my chronic illness: It sucks, but I can work through it for the most part.

Me now that I’ve got some kind of cold: I’m dying, everything hurts, I wanna go home.

On the bright side, my GP is my urgent care doctor tonight, so at least I have a doctor who knows me and my crappy immune system.

[psycho-psychology]

Update: Just got called back, waiting on the doctor. I'm hungry (and into the point where I start getting migraines if I don't eat by a certain time) and haven't had anything to drink since I got of work 2 hours ago. My throat feels like sandpaper.

[psycho-psychology]

Me about my chronic illness: It sucks, but I can work through it for the most part.

Me now that I've got some kind of cold: I'm dying, everything hurts, I wanna go home.

On the bright side, my GP is my urgent care doctor tonight, so at least I have a doctor who knows me and my crappy immune system.

[psycho-psychology]

You know you’re a nerd with digestive issues when...

You pause Jeopardy! to run to the bathroom.

[psycho-psychology]

Does anybody have any road trip advice for Spoonies?

I have hypermobile EDS, but any chronic illness tips are welcome. My family is driving 9 hours (not counting food, stretching, and bathroom breaks) and stopping for the night, then driving another 5 and a half hours the next day. I already know the Miami temperatures are gonna give me trouble. I have a week and a half before we leave to prepare if anybody has any tips. This is my first real road trip since my diagnosis last year. This trip is my early graduation present before I get my associates, so I want the trip to start out as pain free as possible.

Edit: I’ll probably sleep for a lot of the drive, but it’s in the back seat of an SUV, so I’d still like to find a way to make that suck less. Like I’ve already mentioned, this is my first trip since my diagnosis (like 8 months ago), so this is the first time I’d actually know I needed to prepare. I’m also traveling with my mom who has degenerative disc disease in her spine (she has a small metal cage in her lower back already), fibromyalgia, and possibly EDS, as well as my boyfriend who also has spinal and knee problems (sports related, not chronic illness related), so if there’s any advice to make the trip better for them, that would also be helpful.

[psycho-psychology]

Nothing like a toe subluxation right before work....especially when you work with preschoolers.

[psycho-psychology]

He heard his name, but he still won’t look at the camera. This is better than his normal reaction. He normally chews his butt when I go to take a picture so I won’t take it. @not-close-to-straight he’s cuter when you can see his face. I still can’t get the stripe down the middle of his face or the spot/small stripe on the back of his head but eventually I’ll get him to look at me.

[psycho-psychology]

@not-close-to-straight he’s camera shy but Toby and I are sending well-wishes your way.

[psycho-psychology]

To the writers out there

@not-close-to-straight and others who happen to see this: What is the funniest line you’ve ever written into one of your stories? I just tried to write a cute breakfast in bed scene, and it spiraled into: “That sounds like such an old man insult...You soggy waffle!” and I can’t stop laughing.

It’s funnier and context, but my brain keeps repeating “soggy waffle” in the character’s voice.

If anyone feels like it, feel free to check out my AO3: We_Are_the_Crystal_Gems. This line will be in the next chapter of my fic Saving Private Donut.

[psycho-psychology]

Dumb EDS related decisions

So, my work kids decided they wanted to see me try and do a handstand (keep in mind these are young kids who don’t understand my lousy joints). I did gymnastics as a kid so I was dumb enough to listen. I was doing pretty good until my foot slipped off the wall and my bad knee slammed into the floor. So yeah, I’m an idiot because I’m in pain and I have to make it through 3 ½ more hours of my shift.

[psycho-psychology]

The bruises are the aftermath of my stupid decision. Ignore the scars from my lateral release last year. They healed a little funky because, you know, EDS skin...

[psycho-psychology]

Dumb EDS related decisions

So, my work kids decided they wanted to see me try and do a handstand (keep in mind these are young kids who don't understand my lousy joints). I did gymnastics as a kid so I was dumb enough to listen. I was doing pretty good until my foot slipped off the wall and my bad knee slammed into the floor. So yeah, I'm an idiot because I'm in pain and I have to make it through 3 1/2 more hours of my shift.

[psycho-psychology]

Fun Ehlers-Danlos Related Injuries

So, apparently I sprained my hip and aggravated my sciatic nerve. I thought it was just a minor subluxation and would go away after a day or two, but it happened Saturday night and it's Wednesday now, so I finally went to the doctor this morning. I got a 3-day course of steroids, Lortab, and low dose Flexeril, plus a steroid shot in the hip, so hopefully this helps.

Question for my fellow EDSers, have you ever subluxed/dislocated/sprained something in a way that was so embarrassing you had to lie to the doctor about how it happened? You don't have to tell me what happened, I just want to know I'm not alone.

[psycho-psychology]

Typical EDS Monday

I work in a preschool/daycare center, with kids anywhere from just under 2 to just turned 5. This is already a lot for people who are able bodied, but try doing it with hypermobility type Ehlers-Danlos. Just in the last 2 hours, I've already subluxed a toe, pulled something all the way up my leg, hyper-extended my ankle, and gotten stuck on the floor. Add in the fact that it's raining (and bringing in a cold front), and it's definitely looking like the next 4 hours of my shift are about to be fun.

[disabilityuserboxes]

This user has ehlers-danlos syndrome