Really wishing I could make an icon just for health posts...Hi! It looks like we finally have an explanation for why my arms and wrists exploded in late October and March. And more importantly, I think we finally have an estimate on how long we'll be like this. Let's get into the update! Monday: Rheumatologist: Asking for an EDS diagnosis His response was, I kid you not, "we don't test for that here, apply for testing at the Baylor University of Medicine or eds.clinic."Yeah, I paid $60 of my allowance just for that. This is the norm here.On the other paw though, he did send in a prescription for muscle relaxants we have to take at night now, which should help shoulder and neck pain. I have no idea how to do the former or what it is, so I went for the latter. It turns out that eds.clinic is something like a telemedicine website (and doesn't take insurance, making its sessions expensive, fantastic), and it has a huge waitlist. Apparently there's a lot of people trying to get in. I was pr

Hi all. This post has taken a while to get started, because the sheer size of what I have to type is going to be a huge burden on our shoulders and arms as they are now. So... a while back, I heard we might have EDS from our wrist doctor. At the time, I have to admit I didn't know much about it and didn't do much research on it. Our friend told us a surface-level description of EDS: It's a hypermobility disorder affecting the skin and joints, it might make one able to move their body past its natural limits, and it's generally understood as the "stretchy skin disorder".I didn't think a lot of it applied to us, but some of it certainly did. Things like joint popping and snapping, chronic pain (to some degree), and I later found out EDS can cause very smooth skin, which ironically means us being so pretty is because of this disorder. On the 9th of this month, we were having a usual affair of a day, then Sunny, out of curiosity, decided to research EDS some more, maybe figure out what typ

Saw our wrist doctor again today. I was expecting we'd jump straight into OT today, but apparently not. He wants to wait one more month first, and we set up an appt. Okay, fair. What's really important is what he said next. On the way out, he said, "Have you been checked for Ehlers-Danlos Syndrome? You seem like you have it." So that's... okay. I need to get into this for a minute. No, we haven't been tested for it before, ever. But Ehlers-Danlos, or EDS for short, is a hypermobility disorder. And hypermobility disorders are genetic. I talked about it with one of our best friends who knows a lot of medical and condition stuff - his brother has EDS. We traded symptoms. Some of the things he said added up with us.And the real kicker - our brother is hypermobile. He's triple-jointed. That means there's a precedent that hypermobility is in our genetics. From what I can understand, hypermobility does not always mean EDS. But EDS is caused by hypermobility. And for the record, broadly speaki

CW for medical trauma Okay, fuck. Okay. Fuck. Again. I need to get this out. I need to get this out right now. I wrote about the medical trauma I lived through in my late teens in another post, but it goes further than that. For as long as I can remember, my body has not been right. Something has been wrong with it. I was always hyper-sensitive to touch. Everything hurt. In elementary school, it was so unbearable that I got into fights. And even in my youth, years and years of abuse, neglect. Being told by my family that all my sensitivities are in my head. That I'm "just sensitive". That I'm making a big deal out of nothing. I was told this by gym teachers, by staff, by other children, by my family. Nobody cared. I had constant nurse visits throughout my school life. In middle school, I had to go home sick frequently. The dickhead gym teacher turned on loud music that hurt my autism, refused to do anything to accommodate, and anytime I complained of pain, I was told, it's fine, everyo

(CW: Injury, body horror, mentions of surgery, self-injury) 2003 A little kid gets on his tricycle. He's riding around outside. His mom is watching nearby. It seems like a normal day. That is, until the trike hits a snag in the concrete, sending the boy tumbling off the side. His nose smashes clean into the pavement. He's just lying there looking up. The mom rushes over and helps, taking him inside and getting him cleaned up. It hurt a lot, but surely it would be fine. Over the next few weeks, he starts to have trouble breathing through his nose. It hurts more and more every day. At one point he curiously pries open a nostril with two fingers in front of the mirror. There's some kind of gross, fleshy something inside. With no idea what to do, he tells his mom and tries to show her, but it's ultimately fruitless. 2009 The boy's more sapient now, and attending primary school. He hasn't thought about that accident in years. But it's brought back to the front of his mind when other kids ar