Our shoulder surgery is tomorrow (Oct 7th). It'll be our seventh surgery this year, and at least twelfth total. Unlike the others this year, I'm not looking forward to this one. Yes, it's important and necessary, but I've been led to believe the recovery will be harsher than the wrists and elbows. Even though we have a ways to go, our wrists and arms are currently doing a lot better than 1-2 months ago - and this surgery will set us back immediately, since we'll be in a cast again. I just learned our arrival time will be 5:30 AM, which is actually perfect, because our sleep is nocturnal right now. I also want to share what's been going on medically for the past month, because it's been a wild ride. OT OT went pretty okay, same as usual. There was a few highs and lows. I learned our grip strength has measurably improved since we started coming! That gave me some hope, even though our neck procedure left our arms and wrists in worse shape than before for a while. I was slowly but surely

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,

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

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

Hi! Another quick update related to the wrist/arm thing. We saw the amazing wrist doctor again today. We weren't expecting much - it's just a followup to get our left elbow cast off - but I ended up hearing a fair bit. He was happy to see me as usual, and excited to learn that the numbness in left fourth/fifth fingers is gone. I'd been suuuuuper anxious lately about what it could be - tendonitis is our leading theory! But I knew one of the #1 things you don't do as a patient is self-diagnose in front of your doctor. So I kept quiet. He was happy to tell me as he took off our cast that... when he sees us again next week, he's going to send us to occupational therapy. Not physical therapy - occupational. We've been to OT once in like... 2017? 18? But we had untreated carpal/ulnar tunnel and CRPS, so none of it ever helped. But now that it's been treated... I have faith in this. Moreover, I told him about the physical therapy I went to for half a year or so. He told me that physical thera

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