#eds probably

[clatterbane]

Oh my. Unfortunately just reminded of the fun of eventually having to call for a freaking ambulance to haul my stupid ass to the hospital with a weirdly broken hip in December. Because there was no way I could reasonably get there with Mr. C driving me, that leg was just so nonfunctional and painful. I didn't think I could get myself to the car, even with the wheelchair.

Then trying to explain to professionals that the main reason I delayed seeking medical attention for like 24 hours was because I thought it was just particularly thoroughly dislocated--and was waiting for it to hopefully pop back in on its own. I still thought that was what was going on when I very reluctantly decided that maybe I needed actual professional assistance putting it back where it belonged. NOPE.

It wasn't even mainly communication barriers, especially with my partner (of the Amazing Dislocating Shoulders!) along to interpret where necessary. It was how few of them even seemed to have heard of connective tissue disorders where that sequence of events would even make sense. They really couldn't imagine how anything like that could legitimately happen, and some started asking Pointed Questions when my partner was gone that made me halfway expect Social Services to appear.

(I mean, good that they are asking Pointed Questions if someone actually needs it. But, I did indeed do this to myself being a klutz--and then I was the one who decided to postpone medical attention until I concluded it was truly necessary. Nobody else had any involvement there, besides trying to be helpful when I was even having trouble getting my lousy carcass to the bathroom. Similar was also a good bit of the reason they did get involved back in 2020 after the Septic Slump in Romford, and y'all may recall what a clusterfuck that whole thing was.)

Anyway, thankfully there were at least a couple of medical people there who did know enough about this SUPER RARE "new" thing that they did find the truth plausible. (That I got diagnosed with in like 1988, after a weird ankle injury.) And apparently managed to satisfy the others enough that they at least stopped grilling me about this bizarre situation.

But yeah, that's kinda how prone I am to exaggerating and making a big deal out of nothing with medical shit. Never mind "drug seeking". I'll hang around with a fucking broken hip for at least a day before I decide it really does warrant dealing with medical professionals if I want to have a functional leg again. Never mind lesser stuff.

[queervalier]

Will these babies convince my new doc I don’t have fibro? We’ll see….

[ID: a pair of crossed legs. You can see an ankle-foot orthosis, a purple sock, and black converse with blue ribbon laces on the top leg/foot. You can see an ugly waiting-room carpet. /end ID]

[clatterbane]

Original Editor - Elizabeth Dallas, Boris Alexandra

Welp, at least now I have a more specific idea of wtf is going on with my own chronically bitchy thumb! Thanks to someone helpfully mentioning it on /r/hypermobility. Figured it just about had to be yet more tendinitis, but yeah apparently this is a specific known thing.

It was already acting up again, and I tried the Finkelstein test. OUCH! 😬 Seriously fucked up my whole forearm for the rest of the day, at least. Hoping it will calm the hell down some while I'm asleep.

Meanwhile, makeshift bracing time!

(One reason I do like to use the gloves outside the house, I realized. Though generally only there. Also helps stabilize that joint some.)

And yeah, the same type brace I had found on my own and was periodically using before is what's recommended for the De Quervain's. Another thing those cleaners made disappear while I was in the hospital. 🙄 I'd already been thinking about getting a replacement, but now another one should be on the way!

[clatterbane]

Oh yes, one thing that I was totally unsurprised to find almost immediately after I knew to start looking into this at all:

In general, a hiatal hernia is not believed to be genetic, but the most common hereditary condition that may be associated with a hiatal hernia is Ehlers Danlos syndrome.3

Causes and Risk Factors of Hiatal Hernia

The cause of a hiatal hernia is not clear, but several risk factors increase your chances of having one, including obesity, smoking, straini

As I'm pretty sure I commented not long after I found out that there is, indeed, also a hernia? Yeah, some symptoms when it's acting up reminded me a lot of what my Nana was showing/describing with her attacks.

And that's exactly where I seemed to get the Troublesome Bendy. She apparently had some prolapses, etc., besides the musculoskeletal shit, similar dysautonomia symptoms, and dyspraxia. And hiatal hernia. 🙄

Pretty sure that I did get mine through the straining from the same extreme vomiting episode that caused the esophageal damage, too. Totally new symptoms for me.

[clatterbane]

Trying to spot what was even supposed to look unusual in that last video reminded me again of another example of "waah! bodies just don't work that way!!!", where presumably non-bendy people did not even seem to want to process what they were seeing.

When I was stuck in the hospital over the summer, on several different occasions I had different nursing staff come trotting over when they saw me dosing insulin in the upper arm. "Waah, no!!! The BACK of the arm! The BACK!!!"

Which struck me as a damned weird reaction, even if I had been using a different part? 🤔 Besides the fact that these ARE my own personal arms attached to my body, I still have no clue where they thought I was poking myself other than there. The whole thing was just freaking bizarre.

But, after maybe the second time it happened--involving a different nurse? It finally dawned on me that this might be another case of Unexpected Improbable Anatomy Error mental BSOD.

Guessing it may have been the rotation, in that particular instance? It's honestly hard to tell.

Still not entirely sure how those people would even access the backs of their own arms in a way convenient for using an insulin pen, but apparently No Not Like That. 🙄 🥴

[clatterbane]

(Re: this post)

@katisconfused - Hahaha, no that's fine! And actually nice to hear, tbqh.

(On the similar faces front, a lot of my biodad's family started out Irish. As may surprise nobody. 😅)

But yeah, I have to say that I am just vain enough to feel lucky that I do personally seem to have ended up on the "what are wrinkles? 🤔" part of the Bendy Spectrum--and not so much the "extra-stretchy skin helps me start resembling a raisin" part. Like some of my close relatives, AFAICT. Or even the "usual amount of crow's feet, etc." part, like my partner.

My skin really seems to suck at springing back from, like, weight fluctuations, which is one of the major points of insecurity I was talking about before! But, so far so good with the rest. *fingers crossed*

It really does seem to be a crapshoot. But, if you aren't noticing that much in the way of changes by this point? Seems unlikely to suddenly start happening.

[clatterbane]

An indication of how ridiculous the thermoregulation BS can get. 😒

(The lines on my leg are from just lying on the bed, btw.)

I did indeed get that shower late this afternoon, and it felt wonderful. It also helped wear me out so that lounging on the bed for a while before supper seemed like a good plan.

So, after a while, that happened! 🙃 I got the goosebumpy Weird Cold--with a lot of my skin cold to the touch, and extreme tiredness!--when it was around 30C/86F both inside and outside.

At that point, I wasn't even about to put on a jacket and/or long pants. I just got up and moving around some. It wasn't long at all until supper by that point, and thankfully I started warming up again while eating. Even though it was another cold sandwich, which seems pretty standard in the evening around here. ¯\_(ツ)_/¯

Now I've gone outside for a bit of exercise again, and just to enjoy not sitting in one room. So, things seem to have temporarily overshot again so that I'm feeling hotter and sweatier than I would normally expect under the conditions.

When I was in the hospital, with regular checks, this crap did not seem to correspond to any blood sugar or blood pressure patterns. I basically have no clue what's up with it, besides more Fun With Dysautonomia.

[clatterbane]

One unexpected side effect from the gastroscopy/dilation treatment session yesterday: more hypermobility/probably-EDS related fun with petechiae down this arm and hand! 🙃

Mostly on the back, for whatever reason. They're not showing up great in this lighting, and they actually looked worse/brighter red last night.

My best guess is that this came from the periodically auto-inflating blood pressure cuff, which felt pretty aggressively tight and stayed on there a good while because that was a longer session yesterday.

It was immediately very visible afterwards, and nobody has seemed to notice, or at least found it remarkable enough to say anything about it? ¯\_(ツ)_/¯