#modernpolymath

[stealtharchaeologist]

@modernpolymath Hoo boy, that was a LOT. Sorry for the very long responses in turn, I am working through some thoughts. Thank you SO MUCH for all of this good information. Here we go:

I looked up the tests for IH, I've done overnight sleep tests but not the naps. I will totally bring this up to my sleep doc. Very curious if the naps would find anything interesting or useful.

Yeah, I have a gastroenterology appointment in May. It's funny that you and I had discussed Crohn's a long, long time ago, but I never considered it for myself until recently. I've got SOME sort of IBD, for sure, but we'll see what exactly. Very interesting that there's some sort of connection between IBD and sleep issues? Makes sense inasmuch as, if you're not properly absorbing nutrients, you'd be tired, but I wonder if there's more connection than that?

I had NO IDEA narcolepsy was potentially autoimmune! Fascinating! My pain doc told me at some point that she usually sees autoimmune disorders come in threes. I've had rheumatoid arthritis my whole life, and was just diagnosed with Hashimoto's thyroiditis, so gotta find number 3. Likely Crohn's. It totally makes sense, if your immune system is gonna erroneously attack one thing, why shouldn't it attack all the things?

Have you been able to stay off of the Remicade? I know biologics are super rough, so even if going off of it didn't help your fatigue, I hope you are able to do okay without it.

I will do some more research on the modafinil. The liver toxicity language was starting to get too technical for me when I was digging before, but I'll stick with it this time, lol.

Ohhhh. Thank you for the heads up. I'm between birth control methods right now. I was on Depo Provera for like... eight years? Then got a new gyno and she didn't want to continue it. Apparently long term use causes bone density loss, and since osteoporosis runs rampant in my family, I saw the wisdom in discontinuing. She suggested the arm implant, but, uh... I have... a Major Problem with picking at any sort of blemishes or weird spots on my skin, so I am Concerned that I would not leave it alone. ://// Really stupid, I know. But I'll bring up the modafinil interference at my next appointment so that we can make a decision with that in mind. I have GOT to restart birth control ASAP. My last period sent me to the ER. 🙃 Fucking love endometriosis.

Oh. Well, shit. I very much ruin my routine on weekends; I tend to not take the modafinil (or drink coffee) and sleep through either Saturday or Sunday. Wahhhh. I'll, uh. Have to seriously consider stopping that.

... to be fair, staying awake on the weekend would improve my mental health. Like. Being only ever at work or in bed means that I do basically nothing wrt leisure activities, which weighs really heavily on me, lol. It would be nice to like, play a video game. Make art. Read a book.

HMMMM. Never even considered that since I'm not hypermobile... though as I say that, I'm reminded that my physical therapists tend to comment on my flexibility... but I've never dislocated anything and my skin isn't stretchy. I will do some digging. I've got a friend with EDS, I'll see if she'll let me pick her brain a bit.

So you did 23&Me? Did it find anything else useful? I am deeply skeptical of the DNA testing trend, but like, if it has actual medical uses, I may reconsider?

Again, thank you so much for all the info. You're giving me a lot to investigate, think about, and potentially act upon. Which I've desperately needed.

[stealtharchaeologist]

@modernpolymath Please let me know if you didn't want this posted publicly, I'll delete it, but I had too much to say for the reply feature. It also tends to eat my replies, so.

I am prescribed 200mg of modafinil up to 2x a day (usually first thing in the morning and, if needed, a second dose early afternoon). I agree with you that it worked better as a daily med - I was doing that for a while, but late last year I found out that my liver was being damaged by my meds (non-alcoholic fatty liver disease - I literally have never drank alcohol). It was PROBABLY the acetaminophen in my painkillers that was doing the damage, but the modafinil was the only other med I was taking that wasn't strictly necessary (as opposed to like, my antidepressants, which I couldn't just stop), so I ended up dropping my modafinil as well. However, my fatigue has been getting worse and worse, to the point that I had to take a three week medical leave from work. So, like, clearly trying to go it without the modafinil wasn't working. So I'm taking it again, but kind of sporadically? Like only if I feel like I absolutely cannot shake the urge to go to sleep. But yeah, at some point I'm probably going to have to start taking it more regularly again. Like, I need to function.

Idiopathic hypersomnia, huh? Just looked that up and, boy, those symptoms look familiar. I sleep 10-12 hours a night and frequently take naps and I'm still constantly exhausted. Definitely don't feel refreshed when I wake up. I'm pretty much only ever at work or in bed. And we've done all the sleep tests, to no avail. I did get diagnosed hypothyroid last year, and started taking thyroid meds which I thought would help with the fatigue, but it's. Just. Getting. Worse. I'm waiting on a change in dose of one of my antidepressants because that might be interacting with the thyroid medication, but... I'm not holding my breath. The other small ray of hope is that I have an appointment in November with a leading fibromyalgia specialist, so maybe he can figure some shit out. But I'm still not holding my breath. Also, Jesus, NOVEMBER??

Unfortunately idiopathic hypersomnia looks like one of those diagnoses that's like, "*shrug* we don't fucking know". So, that's fun.

[icantalk710]

modernpolymath replied to your post “So, I was asking this hot guy on Grindr I was hoping to maybe meet...”

I am 99% sure he meant the gay leather party: http://www.brutparty.com/calendar/?view=calendar&month=August-2016.  But please don't ask ME why I know about this....... (over a decade in NYC, a girl learns thinks, okay?)

...How do you know about this? :P

Thanks for the info, I think I’ve dodged a bullet there; I don’t know much about the scene to know what a leather party’s like, haha.  Maybe I’ll look into it one day when I don’t have a late-night commute to the Bronx to worry about.

[capotetdawg]

I mean... I don't disagree @merelyn is pretty great.

[harrietvane]

Thanks for the advice! (And to clarify, since a few of you got excited and i don’t want to disappoint, no I do not have Hamilton tickets whoops, I just mean ‘yep I’m aware it’s a thing’ - alas it’s sold out except of lottery until 2017 I think, that Broadway availability thing not a myth I see)

Anyway, tumblr app blogging from here in, so limited function, but around. Tootles!

[thescholarlystrumpet]

TMI question: What images would be in your aesthetic picspam? How would you describe it

What a fascinating question! Obviously something geeky. Lots of geeky. Like 90% geekdom.Something academic, maybe a messy pile of books. My laptop. Or a laptop, anyway. Because I'm always either writing or on the Internet (like that's not obvious, haha)Something bisexual - a bi flag or pride pic. A few years ago, I'd have included a pair of platform shoes but I'm all about the comfy footwear these days. Maybe still a corset pic though. I own quite a few 😊I don't cosplay as much as I used to, either, or that would also go on there. Overall.... "Bisexual nerdy fangirl writer (who owns a lot of corsets)." Probably not the most uncommon aesthetic around here 😉Thanks so much for asking!! 💕

[heleentje]

modernpolymath sent a post the kind of m...Ooohhhh, do the music one for me! 2, 7, 11, 12, 21, 30, 36, 37, 40

2 has been answered here!

7.     an instrumental

I love instrumentals and there are so many gorgeous ones, but if I had to choose one, it’d be Reset - Thank You from the Okami soundtrack, because it is the most gorgeous and incredible thing.

11.   something you’d give ANYTHING to hear performed live

I would love to see a Vienna Teng concert one day, because her music is gorgeous, but right now, I would give an arm and a leg to see Hamilton live on Broadway (and with the ticket prices being what they are and adding in the cost of the flight and stay, that’s probably exactly what it’d cost too. A girl can dream.)

12.   a song by an artist who’s from where you’re from (town/city/state/country)

‘t Smidje (the blacksmith) by Laïs. So so catchy and so good to dance on :)

21.   a song that you could SLAY at karaoke

Crashing Down by Heather Dale. In general, I can probably pull off most things in the mezzo-soprano range (though my volume and range leave something to be desired.)

30.   a song 40 years older than you

Luck Be A Lady (It was ridiculously hard to actually find a song I knew, for the record.)

36.   a great song you discovered thanks to television

... Does Braving! count? It’s technically TV, right?

37.   a song you’re ashamed to have in your music library

... There’s probably something but I honestly can’t think of anything right now. I lost most of my library when my hard drive crashed a while back, so the current one is kind of empty and I don’t fully remember the old one.

40.   favorite disney song

Yes, it’s a Disney direct-to-video sequel, but I could recite this entire movie by heart when I was a kid and probably still can, and I never stopped loving this song, so One of Us from the Lion King II.

Or as I knew it: Een van ons.

[stealtharchaeologist]

modernpolymath replied to your post “Bleh. I hate being normal-person sick. Luckily I’m so used to chronic...”

Are you feeling any better, dear?

Sadly, no. Now I’ve got sinus and chest congestion, and my throat really really hurts. But I’m still functioning, so whatever. As long as I don’t lose my voice.