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