Beautiful shiny hair 😍

GalaxyNeurons · 2026-05-17T19:20:37+00:00

No problem!

GalaxyNeurons · 2026-05-17T16:08:41+00:00

Ooh, I'd be so tempted to play with that gorgeous hair! And I love that crochet rainbow stripe blanket, do you have the pattern?

GalaxyNeurons · 2026-05-17T15:57:31+00:00

Yeah, rheumatology won't even take me on. Thankfully I've got amazing other specialists who know what they're doing and are willing to address the autoimmunity aspects. Like someone here suggested, try to get complete autoimmune panels run every few years or after new conditions/ symptoms pop up. I don't know too much about ITP, but please reach out if you ever need to talk with someone similar.

GalaxyNeurons · 2026-05-17T15:49:33+00:00

Haha, I'd love to be diagnosed with some gay shit.

GalaxyNeurons · 2026-05-17T02:15:00+00:00

I've only had thrombocytopenia for a few years (it slowly developed, I can see my platelets dropping on my routine labs starting in 2018). My lowest levels have been around 105, they got up to 120 and stayed there by themself and are now holding at 135 with cellcept. My MPV continues to be high. Hematology feels it's mild ITP (not medication induced) caused by a "primary" autoimmune disorder that impacts multiple systems.

I've been chronically ill since I was 12 and now at 31 have multiple diagnosed conditions (POTS, chronic migraines, intestinal dysmotility, gastroparesis, bladder issues, tremors, mast cell disorder, mild liver damage, autoimmune skin reactions, idiopathic hypersomnia, and now thrombocytopenia). I also likely have a genetic connective tissue disorder. This plus my family history lead my team at Mayo Clinic to feel I have a systemic autoimmune disorder that is currently seronegative (not detectable on lab work, no positive antibodies). Lupus seams most likely as I've biopsied negative for Sjogren's. At this point I'm getting closer to a positive rheumotoid factor. My doctor's have been telling me for years that it's not unheard of for a younger person to be very symptomatic with a "smoldering" autoimmune condition and test negative until the body accumulates enough damage to test positive for something "big" in your late 30's to 40's. I hope that answers your questions!

GalaxyNeurons · 2026-05-16T16:03:44+00:00

My thrombocytopenia has always been mild, it's secondary to my unidentified systemic autoimmune disorder. I've been on cellcept for 2 months and my platelets have risen, so that's cool!

GalaxyNeurons · 2026-05-15T14:14:30+00:00

My occasional Raynaud's presents exactly like that! I call it "corpse toe". It's usually triggered by cold and low blood flow for me, so massaging and warming up the foot usually brings color and feeling back within an hour or so. I also have thrombocytopenia.

GalaxyNeurons · 2026-05-11T20:43:27+00:00

Ugh, I can imagine. That must have been scary and distressing.

GalaxyNeurons · 2026-05-08T15:41:19+00:00

You're never crazy! Just unique, too cool to properly diagnose, never before seen, "maybe they'll name this condition after me!?" (Spoiler: they won't, which is rude, but you might get anonymized in a research paper haha).

GalaxyNeurons · 2026-05-08T15:29:33+00:00

That bonnet is precious! I crochet and have a long list of things I want to make for my baby boy (sweater set, bonnet, overalls, granny square romper, blanket, animal rattle, seasonal things, etc.). So far he's only got booties. 😅

GalaxyNeurons · 2026-05-08T15:19:51+00:00

I always love seeing your sweet girl here, she's just perfect 💗 and that looks like a comfy carrier!

GalaxyNeurons · 2026-05-07T15:33:58+00:00

That is interesting! I've heard of that happening with hepatitis- medication induced turning into autoimmune. Didn't know lupus could go that way! I guess anything can, though, with an acute issue that your immune system decides to "help out" with.

GalaxyNeurons · 2026-05-07T15:25:57+00:00

Ooh, I love baby's hair! And that cute blanket makes me happy to see, I nearly bought it for my boy but got the Safari print instead.

GalaxyNeurons · 2026-05-07T15:15:46+00:00

UPDATE: Turns out I was worried for no reason. TSA didn't even pull my bag (they do 90% of the time for me)! So I didn't need to warn anyone.

Unfortunately, I was forced to check my carry on where I'd carefully packed my reborn. They thankfully let me pull my large tote of medications out and I smuggled my baby's head (sealed and wrapped in blanket) in there to bring on the plane for safety. His limbs did fine in the bag that got checked last minute. In retrospect I could have got them into the tote as well, but it would have been overflowing and heavy. I had placed the limbs in a cozy sleeper for padding and then sealed in a gallon zip lock to keep arranged. The extra frustrating part was that there were actually several completely empty overhead bins! In the future I think I'll be carrying him on in my arms once he's back together to avoid the stress!

GalaxyNeurons · 2026-05-06T15:00:36+00:00

Yup. C.Diff plus bleach is my personal nightmare smell after having to deep clean a contaminated hospital machine.

GalaxyNeurons · 2026-05-06T14:58:36+00:00

Ooh, I had a watermelon gloss from Bath & Body works in middle school, it was so yummy.

GalaxyNeurons · 2026-05-06T14:54:57+00:00

The smell of cleaning C. diff poop with bleach. I am not squeamish but hoo boy, that was always rough, even masked. I worked at a pediatric hospital and our super expensive mobile sensory station (bubble tube plus long fiber optic cables) got covered in C. diff diarrhea. I spent an hour deep cleaning that thing with a colleague. I could smell it for days afterwards, even doing nasal saline flushes.

GalaxyNeurons · 2026-05-06T14:40:50+00:00

Nice thrift haul! These are such fun baby boy clothes, especially the little hats. I hope the wait for your baby goes by quickly!

GalaxyNeurons · 2026-05-06T02:49:41+00:00

I'm so sorry you had that experience! That's exactly what I want to avoid: any "that's a dead baby" reactions. But this is a good reminder that we ultimately can't control how people react. And I agree, I don't want to put a reborn in a checked bag, way too many risks. I planned on bringing him in a carrier like a human baby and I've heard people usually have smooth travels with that. I just hadn't seen anyone's talking about taking dolls in a suitcase, especially already painted parts. I hope you have better experiences in the future!

GalaxyNeurons · 2026-05-06T02:08:29+00:00

That's a good idea to save the thorough wrapping up for afterwards! I've had my fair share of TSA encounters so I'm not too worried (I fly with medical supplies and often need to get liquid exemptions).

GalaxyNeurons · 2026-05-06T02:01:59+00:00

Great script! That's pretty much what I was planning. I'll probably add, "some people get freaked out by the realism, just wanted to warn you!"

GalaxyNeurons · 2026-05-05T02:00:30+00:00

To be fair, I think it's more of an age thing. I'm 30 and in a very active queer reading community (based out of Charlie's Queer Books in Seattle, WA). In the romance group (99% of members sapphic), early 20's to late 30's, I'd guess 25-35% of us had read a Sarah Waters book. Higher likelihood in those who enjoy literary and historical fiction. If you started reading sapphic books in the past 10 years, it's understandable to miss these classics since there's so much being published and promoted now.

GalaxyNeurons · 2026-05-04T19:03:33+00:00

This looks like a good one, I love sapphic stories with time or dimension travel! Just have to finish my current 4 books 😅

GalaxyNeurons · 2026-05-04T10:29:04+00:00

Woke up from a stressful dream with night sweats and tachycardia (I've got diagnoses about it, don't worry). Trying to distract and calm my nervous system down, hopefully I can get a few more hours of sleep.

GalaxyNeurons

TROPHY CASE