Hi all. Health update again. First post in a good while too. If you've been with us on discord, you probably already know a lot of the stuff I'm about to say. If not, buckle up. About that neck procedure I talked about this in the last one, but we needed a neck procedure to reseat herniated discs in our neck. Well, it happened. On August 13th, we had the procedure. Due to me having pain with the IV, Sunny was the one who actually went in to the operating room. There was no generalized anesthesia for the operation, just local (instead of being put to sleep, we were made "loopy" and numb). When the doctor came in, he called us by our deadname, which is wrong, because his nurse already had our real name written on our chart from when we saw him before, so he should've known. Sunny corrected him, and he handwaved it in this kind of "yeah, sure" way, before Sunny felt something bump into their left elbow, where we'd had a previous surgery. It hurt, so Sunny complained, to which the doctor l

Hello again! I'm very happy to finally have some good news to share about our health! Over time, we've been getting better, bit by bit. It was a slow crawl at first. Back in March and April, we struggled to even get out of bed most days. But since Sunny showed up, we've been slowly reclaiming control of our life. Recently, our wrists and arms have been workable enough that we've not needed our wrist braces for quite some time! And not only that, I've been driving us around almost every day! Driving had been a pretty difficult milestone for us to reach, because of how much it uses our arms and wrists, but we've gotten to a very good place with it. I've been able to drive us to our local ARFID-friendly food place pretty often, last week I took us by office depot and we picked up a new chair and took it home, and the next day, we even went to a big, crowded mall, and picked up some clothes! (Plus some boots we probably need to return...) By the way, in the interest of helping our wrists,

I know what you are thinking, hear me out. Neither of us has made a post like this before but this is too perfect, I just had to share it with the world. So I just rewatched a movie from my childhood (before Eir existed) called Short Circuit. It is an old movie about a military robot created for war being struck by lightning and being brought to life. He meets a nice lady named Stephanie who is dealing with an abusive ex and trying to take care of dozens of animals, and she watches him take in the culture around him and start acting as a real life form, while they both try to evade the military trying to get him back. It is a fun and silly movie, especially if you are the type of nostalgic nerd who enjoys movies like The Truman Show, Groundhog Day, and The Terminator, and movies created around that time. So, during the first half of the movie, we see Number Five take in the world around him. He at first only knows how to say "malfunction, need input" but expands his vocabulary by rapid

Hi all, it's Eir. I've been wanting to write a "normal weblog post" for quite some time, feeling guilty or embarrassed by how many posts on this weblog are just health updates. But I could never come up with a solid topic to write about. I've had this idea floating around that we could write about games again - I have a few thoughts to share on some games, but I also had in mind that Sunny could be the one writing that post. But I'm not sure if Sunny even wants to do that. I might have put that expectation on them by mistake.I think gaming related posts are indeed in the near future, but for now, I want to write a normal weblog post for once. I'm gonna be reflecting on... just how we've been doing, and what our life is like now vs earlier this year, aside from these health things. How this year started My wrists got bad enough to close my Figura commissions last year in October, and that was still in effect. I was relying on my wrist braces heavily, but my main focus was on getting st

Hi again! I went to OT today. This is the one that was recommended by our awesome wrist surgeon, and he definitely made the right choice. My OT today was a very nice lady, who believed me about having EDS, and has apparently worked with many EDS patients before us. That's already a very good sign! But she was extra patient and careful with me, listened to all my boundaries, let me talk about my experience with EDS. She was totally respectful to my name and pronouns, and even briefly mentioned the struggle those with EDS and autism face, that being considered "not normal" by the neurotypical world means NTs want to shove us away. It gave me a lot of hope to hear her say "neurotypical" unprompted. It means she's totally aware of this kind of stuff! The thing that I think is the most important, though, is her friend. She told me about her friend who also lives in Texas. She lives with EDS and POTS, just like us, but less debilitating I imagine, because this lady is an accomplished researc

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

Hey again, friends. This isn't the super giant health-related post I promised, that'll have to wait - I think this one is more important and personal for now. Today, we tried to go to a certain pain management clinic. We've been there before, it's the guy who acted smug about tai chi. We don't like him, clearly, but I went solely because I wanted to test if getting more of those "trigger point injections" would help our pain somewhat. The first time, it had helped the same day, because the lidocaine numbed all the pain in the shoulders and neck. It had felt amazing, but it only lasted for about 6 hours. He had said the first time around that we'll have to come back about every 2 months for more trigger point injections, to keep ourselves functional with our fibro. We may not trust or like him, but I wondered if he perhaps said this for a reason? Anyway, that's why I had tried to come here today. I entered the lobby and started signing in on the clipboard. While I was writing, the recep

Health update A few days ago, on Monday the 23rd, we had another surgery. After a quick recount, it appears to be our 11th overall. This surgery regarded our sinuses, something that's troubled both of us since Sunny was a toddler and first received those life-changing nose injuries. Basically, this operation claims to open up our sinuses, all 3 (you have two maxillary and one frontal sinus). This is meant to help breathe better and drain sinuses better, two things we desperately need.I mentioned in our last post that recovery from this would be rough. It is. I felt like utter shit after the surgery was done, and for the entire day afterward. Until further notice, we have to breathe through our mouth again, just like poor Sunny had to do for the majority of her life before the split. If you've never had to breathe through only your mouth 24/7 cause of medical conditions, you're lucky. We can at least somewhat use technology again, but for the first two days after the operation, our head

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