C Alaric Moore

I’m here to learn. Current Interests (including, but not limited to): Vape hacking, terrariums, SARD/lupus tracking, UV exposure wearables, carnivorous plants

[C Alaric Moore @MsSlothrop]

I’ve been trying to figure out by how much respiratory rate deviation and RMSSD and hormonal shifts affect my overall symptom burden/flares. Adding respiratory rate didn’t change the results much, but RMSSD and luteal phase pick up unique events from one another.

[C Alaric Moore @MsSlothrop]

@DoctorDirtNasty @i2cjak Same actually. I have more batteries than I know what to do with.

[C Alaric Moore @MsSlothrop]

Just had a lovely evening talking about sardine tracker with a fellow luper. Building out the android companion app for her. I’m so curious how the model will perform for her, excited too!

[C Alaric Moore @MsSlothrop]

@Tri_Stanisaurus @StretchGoat_ So he can take photos while sailing?

I’m just projecting, but these seem like two skills a child should have

[C Alaric Moore @MsSlothrop]

@Tri_Stanisaurus @StretchGoat_ Maybe a little Polaroid, I used to have one of the mini ones when I was a kid. Taught me the value of film/finite resources, I only got so much. I still have those pictures to this day.

[C Alaric Moore @MsSlothrop]

@Tri_Stanisaurus @StretchGoat_ For a kid his age this is amazing. Seriously. Get him a little camera or something.

[C Alaric Moore @MsSlothrop]

@Tri_Stanisaurus Alright then, @Patrick_Maksoud and you get first dibs once we figure this technology out. We’re gonna be so well rested and productive.

[C Alaric Moore @MsSlothrop]

I wish I could give other people chunks of my sleep-hours, like a timeshare. I’ll give you 14 hours of sleep and you can give me like 6 hours of productivity and awakeness. Deal?

[C Alaric Moore @MsSlothrop]

@sonuujjawal26 Circle circle dot dot now you have the cooty shot.

Obviously.

[C Alaric Moore @MsSlothrop]

@chrisbolas Yea! Get a lazy Susan! Then it’s spinny

[C Alaric Moore @MsSlothrop]

I love how Temu says “buy our fast fashion” but then promotes what I guess would be good things for a mobile vet office?

Low key want the ultrasound just so I can I dunno, look at my dogs intestines or the wiring in the wall. Can you see wiring with an ultrasound? What other things can we see with it?

[C Alaric Moore @MsSlothrop]

@chrisbolas I like this display style, though I can imagine someone mucking it all up and grabbing one from the middle.

But the symmetry is appealing to me.

[C Alaric Moore @MsSlothrop]

Here’s a relevant paper, but there are more I ought to synthesize to bolster my argument.

But it’s plain to see, we’re undercounted, not rare.

I’ll add that my family is mixed, with euro descended and native descended ancestry. Myself and my aunt being entirely euro, and my two cousins being more mixed.

But we are all Okies. There’s a thread here and we aren’t reporting the numbers. Because we aren’t counting.

https://t.co/bh37sVwVap

[C Alaric Moore @MsSlothrop]

Fun fact: we can’t confidently say lupus is rare, we haven’t been actually reporting case numbers. All of the numbers we have are best guessed based of regional approximation. The last census attempt in Oklahoma was done in the Indian Health Services system and rendered 30 SLE patients in 2009, before IHS had a rheumatology leg to speak of. That wouldn’t happen until 2011.

Lupus isn’t rare, I simply can’t accept that.

Lupus is uncounted.

[C Alaric Moore @MsSlothrop]

My own family has THREE generations of women with lupus, all along the patrilineal line, all born and raised in central Oklahoma.

And we know other lupus patients.

We aren’t an outlier, we simply aren’t being counted.

[C Alaric Moore @MsSlothrop]

If the one thing the comes out of my having become sick is that we can finally start simply counting who has lupus, I’ll be happy.

This is a hill worth dying on, because not knowing is likely one of the reasons SLE is in the top 20 causes of death for women in their childbearing years.

[C Alaric Moore @MsSlothrop]

Had a get together with the Moore clan this Saturday, and my two cousins and aunt who all have lupus along with myself, agreed to look into enrolling in the Lupus Family Registry with me. Now, I guess it’s on me to figure out how to do that.

It was also really healing to get to talk about our experiences and we all learned that we have the same red chest rash, instead of the classic malar. Though we all have hyperpigmentation in the malar distribution.

It’s absolutely fascinating, and I’m so grateful that we can have these conversations and they don’t find my autistic drive to learn everything about our disease annoying.

For once, I had an audience of the exact people I want to help the most. My kin, and families like ours.

[C Alaric Moore @MsSlothrop]

This here is Koda, he’s the best, he’s also a dust bunny factory. My life is fur right now. There is no escape.

[C Alaric Moore @MsSlothrop]

@Tri_Stanisaurus @Cephalon_Shade I absolutely love this, and seeing as tornado season isn’t through yet it has immediate utility.

[C Alaric Moore @MsSlothrop]

@arabidsquid This is a good start! Thank you so much!

[C Alaric Moore @MsSlothrop]

What’s the name for this connector? Horizontal flex ribbon connector? Top down?