#starlit posts

[lost-amongst-the-stars]

The extent to which people are ignoring the A of DEIA is so frustrating. Even when the text of bills and EOs are displayed on screen with "DEIA" in the text, people continue to just say DEI when talking about it. The A being added on in text is very intentional as attacks on accessibility and disabled people increase and we see a return of "useless eaters" rhetoric

Please don't ignore the ways these attacks on disabled people are being tied up in DEIA.

[lost-amongst-the-stars]

[ID: two photos of a carved and glowing pumpkin. The first shows a moon and stars on one side. The second shows shooting stars on the other side /end]

We carved pumpkins tonight! I love how mine came out 🎃

[lost-amongst-the-stars]

Lumbar puncture was a success! Opening pressure was 32 so I do in fact have intracranial hypertension. And so far, no post-LP headaches. Just the same headache I've already been dealing with. So I don't have to be entirely flat.

Honestly, it's a huge relief that our opening pressure was high. If it was normal, we'd be back to square one trying to figure out all these symptoms. Having an answer means we can start looking towards treatment instead of searching for answers.

[lost-amongst-the-stars]

We picked up a copy of our recent MRI and CT scans and looked at them tonight and they're.. Concerning. I'm no radiologist but I've looked at A Lot of images of my own brain and it looks Different now in some rather concerning ways that suggest the 3cm cyst on my pineal gland has been blocking off the flow of csf which is why I get really MRIs to begin with. But yeah. It was both validating to see proof of what's wrong but also anxiety provoking as this increases the likelihood of brain surgery in our future.

[lost-amongst-the-stars]

Our morning of medical stuff was pretty miserable. We had to wait over an hour to get blood work which meant we got home and had about 10 minutes before leaving for the neurologist. And despite leaving a bit early to get to the neuro, we were late bc we got stuck behind some kind of motorcade of police and fire trucks 🙃

The appointment itself was infuriating. Good news: we got a prescription for diamox. But that's the only good thing. He's decided it's being caused by my testosterone, ignoring multiple other risk factors (like untreated sleep apnea). And when I tried to bring up the 3cm cyst in my brain that I've been told by multiple neurosurgeons would likely lead to IH one day, he cut me off and said it was unrelated.

So now it's time to start looking for a new neurologist. I'm not sticking around with a doctor who jumps to blaming testosterone while ignoring multiple other risk factors (especially when the evidence of a link between testosterone and iih is a handful of inconclusive case studies).

So yeah. Happy fucking birthday to me. At least I'm getting some meds for this shit.

[lost-amongst-the-stars]

It’s a miracle and it’s a curse, the secrets our bodies keep. The ability to carry the invisible burden of these secrets.

Rachel Harrison, Such Sharp Teeth

[lost-amongst-the-stars]

My first single wound onto a wand :D

I'm now spinning another single in the other shade of blue I have then I'm gonna ply them into yarn

I'm very much enjoying my new hobby

[lost-amongst-the-stars]

I haven't been able to talk/write about this at all yet. I get too overwhelmed and dissociate. I've already discarded one attempt before deciding I need to push through and write this down.

When the eye doctor was diagnosing us with iih, we were discussing possible causes and at the end she mentioned that testosterone can cause iih.

The idea of having to stop T is so horrifying we shut down. Aside from gender dysphoria, T has made such a huge difference for our overall health. Our joint dislocations reduced significantly after starting T and once our periods stopped 3 months in, our very disabling endometriosis almost entirely stopped being a problem. The idea of our periods/endo coming back and losing the joint stability we've worked so hard for is devastating and panic inducing.

But I did some reading this morning and the links between hrt and iih seem tenuous at best (like a total of 5 trans people studied, two of whom treated iih without stopping hrt). So I'm less worried now. But the data being questionable doesn't mean doctors will see it that way. So I just have to hope my doctors aren't too transphobic to evaluate the data.

But yeah. This has been a big aspect of why all of this has been so upsetting for us.