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 able to wean off our wrist braces for the most part over the past two weeks or so, which I was more than happy to share with OT. I don't know if it was because of OT. We saw a new pain specialist ^{(who's not insane)} in this past month too, and he suggested that, with the battery of tests and surgeries our body's been through this year, maybe it needs time to fully heal. I think that might be why things have been improving.

I had my final session with OT on Thursday. OT has to be stopped because of the surgery, you see, which means I'd have to convince our wrist surgeon to send us back there if I want to see that specific specialist again.

New pain specialist

I just mentioned him above, but our new pain doctor left a great first impression on me. The visit was longer than I was expecting, in a good way (these are houston doctors, most of them are just in it for the money) and I felt like he got a clear understanding of our problems. He explained that even though our C5-C6 disc is pressing on the nerve a bit, the discs above and below it have actually improved since last year's MRI, where they were in the same situation... how strange, I never even had problems from those. All I was told is that our "spinal column thinning" is worse than last year, which is definitely true, though. He explained that we shouldn't do neck or spine surgery, because it's a slippery slope that never stops - the body isn't made to handle it, and each procedure inevitably provokes the body to herniate another disc or reshape the spine, so it creates a seemingly endless stream of future problems, and we should avoid it at all costs. I normally would've hated a doctor deciding for me if the cons outweigh the pros, but I happen to agree here.

So, he said that we should give it a while longer, especially after the upcoming surgery, and see how our body feels after it's had a while to recover. Crucially, he said that we could see each other again after that point - I can call him anytime - and we can come up with a new plan. I was even referred back to him by OT when I lamented I don't know what to do if no one believes us about our symptoms. This pain doctor's demonstrated he's at least cordial, kind and friendly, so he's already way better than the previous one. I hope my trust isn't misplaced, but I'm going to keep him in our back pocket for the future.

Sleep consult

We've had a sleep disorder since Sunny was born. We never got any help with it and never knew what it was called, and nobody ever believed them about it. Our sleep schedule advances by 30-90 minutes a day, unstoppably, causing us to swap between diurnal and nocturnal sleep cycles about every 3 weeks I wanna say. It's always been like this, and it causes being on time for appointments and such to be extremely difficult. School was a nightmare for both of us.

Anyway, I decided to look into getting help with it. I'd previously come to our primary care about it, and both times been given doxepin, a medication that supposedly treats sleep issues. Needless to say it had no effect whatsoever. I told them to take me seriously, and finally got a referral to a sleep clinic, which I visited Monday the 15th.

I met the sleep doctor who ran me through a series of questions about the disorder. I explained it as best I could and said I'd heard from friends it sounded like N24 (non-24 hour sleep). He said that N24 is extremely rare, and he's only ever known one patient with N24 in all his years (but he still believed me). He actually ended up deducing that we have restless legs syndrome, a condition I knew nothing about. It's a neurological condition that causes the legs to feel repeatedly uncomfortable where they are in bed, and a sufferer finds themself moving them around similar to tossing and turning. Apparently the fact the legs feel this way sends a signal to your brain to keep you awake. If this is true, it would explain a lot! He prescribed a medication for it that I've been taking since.

So far, I actually wanna say it's helped. It hasn't been a miracle cure-all, but it's definitely made falling asleep noticeably easier. It usually takes hours of laying still in bed to drift off, but after starting and ramping up this med, it's taken much less time. There is one strange thing though, which is our sleep schedule started acting funky since starting, some days continuing to shift forward, most days seeming to stay in place, and a few times seeming to rewind by several hours. I have no idea what it means!

I actually have had this theory for the last two to three months that our sleep is also affected by our bladder, because it seems to act very strangely around bedtime, having us go pee just before bed, then again as soon as 10-20 minutes after climbing into bed, often sending "false alarms" or, more recently, sending out no alarms leaving us awake for hours just guessing at why we can't sleep. I was told by a nurse recently to possibly look for a urologist, as "bladder retention" as it's called can be a serious issue.

Getting talked down to by a doctor (CW: autism meltdown, rejection sensitivity, certainly malpractice or negligence of some kind)

On Friday the 26th, I went to our primary care doctor. I wanted to get an STD panel done just to be safe, but I took the chance to mention how I'd been trying to get in with a geneticist to be tested for Ehlers-Danlos. I've spoken about Ehlers-Danlos before and why I think we have it - there's just too much overlap for it to be coincidence. Conveniently, we were the last patient of the day, as he told me, so he gave me a very long chat about this.

He spent five entire minutes lecturing me about why self-diagnosis is bad, the internet is full of sensationalism and symptoms are very easy to misattribute. I've no doubt he gets annoyed by self-diagnosing patients, but this is not the way to treat this issue. I tried at multiple times to explain why I came to my conclusion. He kept fucking interrupting me, in the extremely annoying way that boomers do, only to continue his rant. He could obviously tell he was upsetting me, because he started sprinkling in "I'm not trying to be mean" while grinning, once again in a very annoyingly boomer way. Neurotypicals love bullying neurodivergents in exactly this way, I swear. I told him multiple times he's scaring me and making me uncomfortable. He only responded briefly "it's not my intent" before continuing anyway. Not even after I listed several of my symptoms I believe fit EDS - the transparent, smooth, extremely fragile and slow-healing skin, hypersensitivity to touch, unable to sit or crawl on knees, joint pain, multiple nerve entrapment - he interrupted again to tell me these could all be explained by our diagnosed fibromyalgia, stressing that only diagnosis can be trusted, as if modern medicine is perfect, which it obviously isn't.

He dared me to do a "test". He took my arm and wrist and tried to bend them, and then was like, "ah, see, your wrist and arm only bend up to 90 degrees, you don't have hypermobility, therefore you don't have Ehlers-Danlos. I'm not trying to be rude, I'm just saying what the folks at Baylor Genetics will tell you." Sure. As a doctor, he should know that there's tons of cases that don't fit all criteria snugly all the time, and people in chronic pain often fall through the cracks - oh, but he's not a specialist, he's just a primary care doctor, all he does is treat people for colds. He even disagrees with our wrist surgeon who said we have EDS, and said he thinks he's wrong! Even though he isn't a wrist specialist, but our wrist surgeon is!

The rejection sensitivity kicked in hard and I needed a while to fully recover. I ended up editing our "health" section in the "about us" page to say that EDS is just a suspicion and not confirmed.

A really tough week

This last week, the week of the 29th to the 3rd, was crazy. Our sleep schedule was nocturnal at this time, and we had to go somewhere every single day, usually multiple places, during the day - which meant forcefully losing sleep to do so. For most of the week, I was running on less than 3 hours of sleep every day. And I was driving in this condition. I simply didn't have a choice! It got bad enough I had to cancel our next-to-last OT session, because I had been awake for 24 hours straight, since I for some reason was finding it impossible to fall asleep at all despite the obvious time loss. The receptionist agreed this constituted an emergency and I shouldn't be driving in that condition, so we weren't charged (yay!)

During this time, Sunny didn't come out at all. Our friends had been getting worried. I just didn't feel I had the energy to spare, as letting them out does take energy and focus, not to mention I felt "safer" in control. I guilted myself the whole time, and tried to gaslight myself into thinking I was obviously evil and controlling, and it's all my fault Sunny's being left alone and our friends weren't seeing them. It's taking me a lot of time to process what I put myself through after the fact. I let Sunny out yesterday, on Sunday (hehe), although they didn't have the opportunity to do much - but that's not what matters, it's that I did let go, just for them. Sunny was just happy to be remembered and included. They're too sweet, really.

On each day of said tough week:

• Monday: Rheumatologist visit. Asked about the head pain we get from wearing something as simple as a hairband. He says it's definitely the fibromyalgia, and can't be helped. He put in bloodwork orders to rule out rheumatoid arthritis and lupus in our system.
• Tuesday: ENT visit. Asked about the sinus headaches we kept getting. We'll pretty much be prone to these forever because of the stupid giant hole in our septum that I hate and that can't be sealed without risking collapsing our nose. He said he would send in some oral steroids that we could take during flare-ups, but a week later it still hasn't arrived in our pharmacy, so I just called and his nurse said they'll resend it.
• Wednesday: Pre-registered for the surgery we'll have tomorrow. It's at a new hospital so I'm worried about how the IV will go. They said there's no copay, but I'm gonna make sure our mother sticks around when dropping off, because usually the anesthesia providers request a separate payment. I also got a flu shot, which took some coordinating.
• Thursday: Final visit to OT, as mentioned above
• Friday: Picked up sleep study device, more on that below. I also went to a blood draw for both the STD panel and the rheumatologist's orders, but it couldn't be completed because our veins simply didn't give enough blood, so I have to come back today, in two hours, after chugging tons of Gatorade, which has been pretty uncomfortable.

This isn't including stuff like side visits I took to go get food, or pick up a organizer binder thing with many tabs, that I'll use for medical records from all our doctors when we apply for disability next. It was tough to even let myself relax over the weekend due to how cooked up I was over this week!

Sleep study

So on Friday I picked up a device for a sleep study, ordered by our new sleep specialist. The receptionist who gave me the device... didn't seem to know what she was talking about. She didn't explain everything until I prompted her to, and kept insisting I'd be setting it up "at midnight" despite my repeating that we have a sleep disorder and sleep during the day right now. I genuinely believe she had no idea what I said to the doctor himself. The way it was supposed to work is, it's a device like a watch with a finger cover and chest sticker, and you're supposed to put the "probe" on your finger, sticker on your chest, and connect to a proprietary app over Bluetooth to send the test data to their offices. Two finger probes were provided because we were supposed to swap between them and only do two nights for the sleep study. Weird, but alright.

So, on Saturday, when I went to sleep during the day as usual, I ran into some issues. Setting up the device went ok, but I didn't know I was supposed to give the app unrestricted battery access in our phone's settings so it can run in the background, so when I remembered that was an option, I was anxious I'd caused it to miss our data. I only slept for 3 hours, then tried to send that data, only to be met with an error that recorded sessions must be 6 hours at least, with no way to even stop the session short of killing the app, what a weird setup! I was mad, and left a message at their overnight office complaining that this device isn't suitable for people with sleep disorders, as I've only been getting less than 6 hours of sleep every day for the past week. Anyway, it was our bladder that had woke me back up I guess, cause immediately after going pee, I conked out and slept another nine hours. I ended the session and had it send all the data, which took a long time and I was worried it wouldn't work, but it eventually did.

The problem was the second day, Sunday, which is when I had let Sunny out. They went to sleep fine, and set everything up properly, but something screwed up after they woke up. It refused to budge even 1% on sending the data to the doctors, even after several hours, so I did everything in their troubleshooting guide. Nothing worked, so I tried to turn off and on Bluetooth, but for some reason Bluetooth got stuck off and nothing I did helped. I was forced to hard reboot the phone and I was panicking. It seemed like it didn't lose the data after all, but now the app refused to connect to the device, even after many further attempts to screw with Bluetooth. I could see on the devices list that our phone clearly detected the device, but the app refused to acknowledge it at all! I was having a full on autism meltdown at this point and if one more thing took away my attention I was going to lose my shit. I uninstalled and reinstalled the app, which unsurprisingly made it start over like my first time on Saturday - but it claimed that there's data left over on the finger probe, and I need to replace it with a new one to begin testing. There was simply no way to recover previous test data, I was now locked out. At this point, I said fuck it, and gave up. I left a very panicked and impassioned voice message on the sleep clinic's number, and I hope somebody hears it. It took hours to calm down, and I'm still upset.

Memories

This one's a little weird but I didn't acknowledge it properly until today. For the past month or two, at least I think so, I've been rapidly losing recent memories. It's hard to remember what happened even 2-3 weeks ago now. I'm aware forgetting things is common with some mental illnesses and traumas, but I've never had it on this level before. I did, however, hear at one point it might be caused by stuff like antidepressants and antipsychotics, although again, it hasn't been this bad until recentlty. Today I talked to my lovely catwife about it, and we agreed I should talk to my psychiatrist next time I talk to her. Putting this here so you all know about it too, and I hopefully remember to do so.

Closing notes

Because we're going to surgery tomorrow, we'll be in a cast right after. We've been in a cast 4 times this year already. It's definitely going to be unfun having to shy away from what we've been doing in our free time, mostly games and stuff, but a few forays into art as well. I'm not looking forward to that. I'm also not looking forward to the pain that's supposed to come from this. If I'm reading the pre- and post-op papers correctly, the cast is supposed to last for 5-6 weeks instead of the usual 2-3 weeks we had with the others, and that worries me. Whatever the case, we'll survive, and then we'll see if we need the left shoulder done too, although I'm starting to feel like that's a "no" unless they find a SLAP tear in our left shoulder too.

If you've been worried about Sunny's safety, don't be, they're perfectly safe. We had a very brief chat, and we're sure to have some more as time goes on. If anything, maybe this upcoming rough surgery recovery is a good way to knock me out of the pilot's seat for a while and give Sunny some much needed time out. It could be like when we recovered from the previous surgeries, even. It's a very personal issue, but a lot of this has to do with my inability to "let go", which I won't get into here. Anyway, yeah, the point is that we'll both survive. Thanks for reading!