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,

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

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

Hi, quick health update. And yes I know the blog is like 80% health posts.Today we got our bandages off and stitches out from the right elbow surgery. I asked a few questions we've been concerned about. Here's some info we want to share: Still having wrist pains, but nowhere near as bad as before. I had made an update about a week ago saying things were improving, but unfortunately they aren't in the wrist department. There's still lots of internal swelling in our right elbow. That's why it hurts just to rest it on surfaces like an armrest or a bed. Additionally, that's why we can't bend our arm as far anymore. We have to keep stretching it with occasional arm bending exercises and just wait it out. It'll heal up soon. It's possible that as the elbow heals, it can relieve pressure on our wrist and wrist tendons. If our right wrist tendons don't feel better by the time we heal from surgery #4 (left elbow surgery), we may need physical therapy. With that out of the way, now I want to ta

It's Eir. Quick update on the arms situation! Didn't post here when it happened but, on the 14th, we had surgery. Largely uneventful except we had to tag-team to manage pain because, yes, Sunny's pain relief talent is incredibly useful. We were in a cast after that, but we noticed pretty much immediately that the pain in our right wrist pretty much vanished, almost completely. The fourth and fifth fingers stopped going numb entirely. It already felt way, way better. Well, just today, we finally got our cast off, and we have some new things to share! Sunny went in to the wrist surgeon's and, from our shared memory: Cast came off, but we aren't completely done yet, we have to wear a new dressing (different bandages) for another week before we get the stitch taken out There was almost zero bruising, everything looked beautiful Still very difficult to bend elbow, and we will need more time for that The doctor was extremely cool too, here's some additional info we're happy about: He asked f

For once, I have some exciting news to share about the health situation. Today I met with the wrist surgeon who operated on me in February and cured my carpal tunnel in both arms. I explained the situation as best I could. Everything involving the spine surgeon, the EMG, the ulnar nerve that was suspected but not confirmed. I was terrified he wouldn't believe me. He listened fervently and made lots of facial expressions. I really wasn't sure what to think. He said first, "okay, I'm going to choose to believe you. We do not have to do the EMG. Fuck the EMG." (yes he actually cussed! i thought it was cool) He went on to explain why he chose this. He believes after testing my arms and wrists that I do have ulnar nerve, or Cubital Tunnel as he called it. He believes he can treat it with surgery. Important bits: He will schedule surgery for me ASAP. I am to expect a call today or tomorrow to schedule the surgery. I sincerely hope this won't take several weeks to schedule like it did the fi