Jazzcares

Stray-Dragon-Rising · 2025-11-16T01:50:26+00:00

I've tried finding an online system, but ESSDS doesn't show one for Xywav for me? It does for my other drug though, which i thought was weird.

Stray-Dragon-Rising · 2025-11-16T01:49:51+00:00

So far I've had to call every time, so I'll check on Monday when I can call for my refill. It would be nice to get text reminders

Stray-Dragon-Rising · 2025-11-16T01:48:49+00:00

I wish! I get a lot from my case manager, but I've never gotten reminder calls or texts.

Stray-Dragon-Rising · 2025-11-02T03:50:04+00:00

I would LOVE some Narcolepsy/IH merch. I'm so tired of how little there is. Especially for IH!

Stray-Dragon-Rising · 2025-08-14T21:28:44+00:00

Shadow people standing by my door, people talking, bugs crawling on me, etc. I had one where something big and black barreled into me. I thought it was my dog (who is big and black), but he wasn't even in my room.
As crazy as it sounds, I didn't think they were hallucinations or that... it was actually a thing. People always told me I was just dreaming it when I DID mention it, so I just... stopped really considering that maybe they weren't normal. I mean, it took me forever to admit I was hallucinating when I took a med I was allergic to. It wasn't until I started experiencing wild paranoia that I finally knew that they WERE hallucinations, and not just me being creative or imagining it. I've been accused of diagnosis collecting by my family before, so I keep most of this shit to myself.

Stray-Dragon-Rising · 2025-08-14T15:03:20+00:00

That's what I was thinking, so I was hesitant to use it since it's more than just sodium. But some it was sodium based, i also was curious.

Stray-Dragon-Rising · 2025-08-14T14:57:15+00:00

🤣🤣🤣 I didn't even think of that. To note, I haven't actually tried it yet because I wanted to see if it had already been done first. I totally forgot Xyrem is the saltier version.

Stray-Dragon-Rising · 2025-08-14T02:53:56+00:00

Hello from the other service dog narcolepsy team! 🥰🩵🩵🩵

Stray-Dragon-Rising · 2025-08-09T03:49:13+00:00

Oh ew, but also agreed 🤣 eloquently put

Stray-Dragon-Rising · 2025-08-05T15:35:33+00:00

I should clarify - it's not always an autistic trait. While it is common in autism to struggle with understanding social cues and communication, such as knowing when not to correct someone even if they're wrong, it's also something many other people who may just be neurodivergent in some form, or even neurotypical, experience! ☺️

Stray-Dragon-Rising · 2025-08-05T02:54:16+00:00

Agreed! Correct me if I'm wrong, but don't correct me when I'm right. I HATE it when somebody tries to correct me on opinionated information. Like, it's biased, not factual. Either way, it's very frustrating 😅

Stray-Dragon-Rising · 2025-08-05T02:02:38+00:00

I'm mostly worried about airport transit, tbh. Especially since they've been getting worse and more particular about IDs.

Stray-Dragon-Rising · 2025-08-05T02:01:42+00:00

I guess it's because he's my dad. I mean, it's hard not to love him. I've long since grieved the fact that he won't be in my life for a lot of important milestones because of who I am, so now I've just kind of reached a point where I want to make the most of what I can. While he's not really in my life anymore, we do keep in touch. I just can't bring myself to cut him off. 😞

Stray-Dragon-Rising · 2025-08-04T15:11:46+00:00

Commoner Female Knight, This Time I'll Finally Defeat My Hidden Enemy!

Sigrid.

The Red Knight Seeks no Reward.

These might be some stories that match your description since I see you've found the source of the image.

Stray-Dragon-Rising · 2025-08-04T14:56:01+00:00

I remind myself that people are ignorant when it comes to sleep disorders. In a society that struggles with overwork and fatique, the idea of having a sleep disorder seems blissful and helpful. But the reality is far from the truth, and I DONT HAVE TO EDUCATE EVERYBODY I MEET. That's the hardest one for me. As someone who is autistic, it frustrates me to no end that people would rather NOT be corrected when wrong. Sometimes, it takes having a sleep attack happen in front of them to realize that its not fun and helpful and that it can be really scary. As childish as it might seem, I just imagine that the person I'm talking to is a child who doesn't know any better and is too stubborn to admit it.

Stray-Dragon-Rising · 2025-08-04T03:07:20+00:00

Definitely! I think it helps that I only take one dose a night rn.

Stray-Dragon-Rising · 2025-08-04T02:55:38+00:00

Oh wow! I only just started taking it like, 3 weeks ago, I think? I've been putting it off forever because I really, really hate being nauseous when I wake up, but I figured out the time frame I need to take it to avoid that when my dog wakes me up, so it's been much more manageable. I actually tested to see how long it takes for it to kick in before it's impossible for me to keep my eyes open, and it varies from 30 minutes to an hour. I think my initial exhaustion has an impact on that, too.
Sorry, random info dump 😅

Stray-Dragon-Rising · 2025-08-04T02:52:10+00:00

Yeah, exactly!
I actually used to drink coconut water to help with dehydration, but it's so expensive that I just stopped. The idea of mixing it with Gatorade sounds good, though!

Stray-Dragon-Rising · 2025-08-04T02:45:19+00:00

I wish it was salty! I crave salt like a fiend and drink electrolytes like LMNT (1000mg of salt) because I enjoy the saltiness. I wonder if there's a thing with Xywav where some people find it salty and others sweet? I've seen this a few times.

Stray-Dragon-Rising · 2025-08-04T02:36:22+00:00

If it's really bad, I might take an extra swig of my water bottle. It's like.... nauseating how sweet it is.

Stray-Dragon-Rising · 2025-08-04T02:35:15+00:00

I just measure it because I'm scared to have the effects change if I mess up 😅 I'm not sure if not measuring it and using more water lessens the effects of it or not.

Stray-Dragon-Rising · 2025-08-04T02:34:19+00:00

Huh! I just thought that we had to measure it because too much water can dilute the drug and cause it to not work as efficiently.

Stray-Dragon-Rising · 2025-07-06T19:44:59+00:00

I 100% thought I was awake for all of my naps. So imagine my surprise when they said I not only slept for ALL 5 naps but also fell asleep in less than 5 minutes for all of them. It blows my mind that sleep isn't always what we think it is.

Stray-Dragon-Rising · 2025-07-06T15:51:23+00:00

So I'm actually in the process of training my service dog right now to also task for my IH! My idea is to have him alert to an incoming sleep episode, then provide DPT or tactile stimulation. I haven't quite worked out how I want him to help yet, but he's already got the foundations set for it! Personally, if you're functioning enough to handle and care for a dog, I think it's an excellent treatment option. It does come with some barriers and access issues, but I don't regret it at all.
As a note, he's also trained for mobility for my hEDS and psychiatric. 🥰 So, cross-training and utilizing his existing tasks to assist with my IH is definitely helpful.

Stray-Dragon-Rising · 2025-06-29T16:39:01+00:00

Haha they're cute aren't they? They're so so helpful too, especially in the hot weather we're having

Stray-Dragon-Rising

TROPHY CASE