Tag: dental stuff

clatterbane:

Reminded by getting aggravated again at a neglected (known) problem causing the hearing loss to begin with, at least one complicating factor does seem to be much better now. *fingers crossed*

Noticing how closely linked Horrible Molar and that ear acting up seemed to be for years, I was certainly hoping. But, finally getting that chronic dental infection cleared up has indeed done away with most of the ear flares too! 💃

(So far, at least. Almost hesitate to say anything still.)

It makes total sense with the anatomy that the recurring inflammation from that damned tooth might well keep blocking off the eustachian tube in the same area. I figure that’s probably exactly what was happening, on top of the existing issues there. And they were certainly quick enough before to blame the ear thing on supposed stress-related TMJ problems. (Not what was going on either, but jaws and ears right next to them.)

And no wonder it got so much worse, with the dental shit going into full meltdown.

But yeah, since getting the residual infection knocked back (way too long) after the tooth was finally dealt with? No more eardrum ruptures, the kind of pain you might expect if that’s happening, listing to one side/staggering around like I’m drunk, general vertigo fun, or all the rest of that loveliness. One of the reasons I gave in and started using a cane, btw, that was happening often enough.

Not expecting that to totally fix the eustachian tube garbage, but it has been a big improvement so far. I’m very glad.

But, I’m also extra irritated that two neglected obvious health problems ever had a chance to gang up like that, with nobody in a position to do anything about it seeming bothered at all. That filling was seriously botched and should have been root canaled in like 1992, with the ear BS already going for at least 10 years at that point đŸ˜”

(Not even going into the continuing accessibility problems just around not hearing worth a damn, and trying to get appropriate treatment for other things. But, talk about snowballing hassles over things someone cannot help which shouldn’t exist at all.)

Reminded of this again.

It’s well into Pollen Hell Season, and the asthma has been pretty aggravating lately. But, nothing much from that damned ear so far! *fingers crossed*

It’s felt a little blocked up a couple of times, and I was automatically going “oh shit, not more of this!”

But, then I realized that it hadn’t caused any problems whatsoever in months. (!) And it never really got to the point of real pain, much less drunken staggering, the ear suddenly leaking revolting shit all over the place, and all the rest. For the first pollen season since…maybe 1984? Around the time that initial botched filling started acting up. (Hmm…)

I’ve also been through several bouts with colds/flu since it last flared up.

So yeah, I am now at least hopeful that finally getting that dental problem properly taken care of might have actually stopped the ear thing from continuing to get worse. And the last few years of active simmering tooth abscess before that were pretty constant escalating trouble with the ear.

Not going to bring the hearing (or balance) back, of course. But, I’m just glad it’s not hurting or making me dizzy anymore. Almost hesitate to brag on it still, and maybe give it ideas 🙄

Why diagnosis labels matter

thefibrodiaries:

stynalane:

thefibrodiaries:

A specialist recently told me that what your label is (meaning your diagnosis) doesn’t matter because no matter what you’re diagnosed with the symptoms and getting treatment/management for said symptoms is what they focus on and what you should be focused on and your diagnosis changing won’t change that.

Honestly though? I disagree diagnosis’s and “labels” are important to the patients even if they aren’t to the professionals. Maybe in the medical community they care more about your symptoms than what your diagnosis is (although I can confirm that this 100% isn’t always the case, especially when you’re undiagnosed) but in the real world it matters. 

  • It matters if you need to access certain treatments that require a formal diagnosis.
  • it matters if you’re at risk of developing certain secondary conditions, complications or injuries  
  •  It matters when you’re trying to get future medical help or another diagnosis.
  • It matters if you need help or support at work, school or college.
  • It matters if you need to apply for disability benefits, a disabled badge or home adaptions. 
  • It matters for your mental health. when you’re worrying about what your symptoms might be caused by. 
  • It matters (unfortunately) when other people ask why you haven’t been able to do x and y for so long and you don’t have a “real” answer so people think you’re exaggerating or faking because if there was something *really* wrong they’d be diagnosed with something right?!

Not only is it important for the above reasons (even though being diagnosed doesn’t always help with the things above) but my illnesses are part of my identity, part of who I am and being able to label myself as a disabled person with hEDS, fibromyalgia etc. Is empowering and gives me a sense of pride and self acceptance. Those labels come with a whole community which have given me a sense of belonging. Being able to talk to others who know what I am going through makes a huge difference and helps me to feel less isolated and alone. Finding people going through the same thing quite literally saved my life.

 When it comes to identity, I feel the same way about my sexuality. Being bisexual is part of who I am and having that label, being part of a community has made a huge difference to how I feel about myself and helped me to get over my internalised biphobia. My sexuality is part of my identity. My disabilities are also part of my identity. The only difference is that people are usually encouraged (and occasionally even pressured) to label their sexuality but when it comes to disability and illness people, especially medical professionals don’t want you to label yourself.

Maybe we need to look at why and stop seeing illness as something bad and negative that we need to hide from the world and start seeing it as a part of who some people are and something they identify with.

Not to mention there are some things that go along with certain conditions that would be super helpful to know on advance – like how EDSers often process anesthesia differently?

You know what doesn’t sound fun? Randomly waking up in the middle of surgery.

Also, how certain symptoms are treated can vary GREATLY depending on the cause.

Like, Pepto and Tums aren’t going to cut it if your nausea is from Gastroparesis.

Any doctor who says labels don’t matter, I will personally diagnose them with a case of These Fists.

EDSers process anaesthesia differently?! Is that considered to be an official symptom of eds?

I’m only asking because I’ve always had problems with local anaesthetic not working fully or taking ages to work. Also I usually need a lot of extra for it to work at all. My mum who also has hypermobility type eds has the same problem. (I’ve Never had general anaesthetic so I’m not sure if it affects that too but I’d be terrified if I needed surgery.)

Local anesthetics have never worked right for me, and I was also very interested to find out that it’s a common EDS/HMS thing. Was going to add a couple of links, but searching on “EDS local anesthetic” turns up a lot.

I was glad just to find out that, no, I haven’t just been imagining that, and it really is way more effective for most people. Getting the relevant people to listen has been more of a problem. The last time it came up with trying to convince the NHS to cover some serious dental work under sedation (successfully!), I took some printouts along.

Just in case it might help on shorter notice, I also got this Local Anaesthetic in EDS keyring Card. That hasn’t come up so far, but with any luck having something to show them might help the issue get taken more seriously. Something to maybe consider for anyone who might need a little backup.

From what I understand, general anesthesia thankfully isn’t usually the same kind of problem with EDS/HMS. I’ve personally never had trouble with it working properly, and haven’t seen people reporting it.

(Though I do have apparently unconnected problems with getting extremely sick for a couple of days afterward–with very high fever, vomiting, and delirium so that they’ve been afraid it was infection. The last time I had surgery, I told the anesthesiologist about it in advance, and changing the blend of drugs did stop that from happening again. For anyone who might have run into similar issues. I don’t think they ever told me the details, and it’s been a long time, but that is apparently a known thing.)

Currently trying and probably failing to convince myself that I don’t really need a 4-lb tub of popcorn. (The smallest amount of anything close to a “hulless” variety I could find without paying for international shipping.)

And I had to get amused at some of the reviews.

The common variety/varieties I have seen here–AFAICT across Europe in general–really does have some of the thickest, toughest, most intrusive hulls I have ever encountered. With the lovely EDS/HMS easily torn up gums factor, that’s really not a good thing.

I really like popcorn, but have held off on eating any for couple of months. After the last popcorn-related bad inflamed gum episode that made it hard to eat solid food for a few days.

Tonight I couldn’t resist popping some again, and thought maybe I should actually try to find something less likely to cause regrets afterwards. Never had it to this degree with even bog standard popcorn varieties back home, and it’s not like my collagen would have gotten any funkier in the meantime. But, apparently it’s not just me imagining the hellacious hulls 🙄

Trying something different is probably worth the money, yeah. Even if we can’t use all of it, as much as I hate wasting food. It should stay good for a while in the freezer, at least.

Still more gratifying than it should be, though, knowing what’s going on there.

Maybe especially with the fun pattern of “dentist inevitably tears your gums all to hell, then makes unflattering assumptions and lectures you about hygiene, is possibly even rougher the next time”. Nope, that’s just how they are because lousy collagen đŸ˜”

I really liked the one who was all, “That shouldn’t cause bleeding! *purposely jabs at a few other places with the pointy metal implement to see what happens* *promptly decides it’s my fault I keep bleeding at them* *starts lecturing*”

(Then again, I also ran into one who decided that obvious demineralization from the celiac must also be poor hygiene. That’s not how anything works…)

Ridiculous Annoyance OTD: Forgetting to do a thorough antiseptic mouthwash rinse before I went to bed. Popcorn strikes again! 😬

I should maybe go ahead and try buying some “hulless” variety, with the aggravatingly fragile gums and my apparent inability to stop eating the stuff. When I know full well there’s a decent chance I’ll be feeling it later.

I could tell last night that some inflammation was starting up, and while the rinsing doesn’t totally fix it? It usually calms down a lot faster if I do. Thank you executive function! 🙄

This time it’s making it hard to chew on the one side of the mouth where chewing works. Both the top and the bottom at the back of that side. Annoying, hopefully it will calm down again (and a couple of molars will stop freaking itching too) ASAP. Soft food in the meantime.

Reminded by getting aggravated again at a neglected (known) problem causing the hearing loss to begin with, at least one complicating factor does seem to be much better now. *fingers crossed*

Noticing how closely linked Horrible Molar and that ear acting up seemed to be for years, I was certainly hoping. But, finally getting that chronic dental infection cleared up has indeed done away with most of the ear flares too! 💃

(So far, at least. Almost hesitate to say anything still.)

It makes total sense with the anatomy that the recurring inflammation from that damned tooth might well keep blocking off the eustachian tube in the same area. I figure that’s probably exactly what was happening, on top of the existing issues there. And they were certainly quick enough before to blame the ear thing on supposed stress-related TMJ problems. (Not what was going on either, but jaws and ears right next to them.)

And no wonder it got so much worse, with the dental shit going into full meltdown.

But yeah, since getting the residual infection knocked back (way too long) after the tooth was finally dealt with? No more eardrum ruptures, the kind of pain you might expect if that’s happening, listing to one side/staggering around like I’m drunk, general vertigo fun, or all the rest of that loveliness. One of the reasons I gave in and started using a cane, btw, that was happening often enough.

Not expecting that to totally fix the eustachian tube garbage, but it has been a big improvement so far. I’m very glad.

But, I’m also extra irritated that two neglected obvious health problems ever had a chance to gang up like that, with nobody in a position to do anything about it seeming bothered at all. That filling was seriously botched and should have been root canaled in like 1992, with the ear BS already going for at least 10 years at that point đŸ˜”

(Not even going into the continuing accessibility problems just around not hearing worth a damn, and trying to get appropriate treatment for other things. But, talk about snowballing hassles over things someone cannot help which shouldn’t exist at all.)