[ID: a photo of a hazy rainbow over pink clouds and blue sky]
Nature said happy pride today 🏳️🌈
seen from Trinidad & Tobago
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[ID: a photo of a hazy rainbow over pink clouds and blue sky]
Nature said happy pride today 🏳️🌈
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.
[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 🎃
Love and solidarity to all my hypervigilant, traumatized, sensory sensitive, and/or otherwise sensitive to fireworks friends 💜
We'll get through this awful weekend of fireworks despite how miserable it may be
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.
Today was a bit rough. I'm having a hard time going from having two days a week with just S during the day to no days a week :( S and K both wake up earlier than me so when I get up they're already into their morning and making plans for the day. Then K is present until around midnight when she finally goes up to bed leaving me with maybe half an hour before S goes to bed. And I'm struggling. I've been easily frustrated or upset over things I had been coping with better. Like I've made a lot of progress with handling plans changes better but a couple plan changes today left me with big emotions I struggled to recover from.
And then I kinda snapped at K tonight. She had ordered takeout for all of us and it wasn't great. She had to wait nearly an hour for the food and it was cold when we got it. Which sucks, but whatever. It was still edible. But any observation S or I made about the food, K would start profusely apologizing and acting like it was her fault. I was having a bit of trouble eating because it was messier than I expected and the sensory experience on my hands was miserable. And K kept asking questions about why I wasn't eating and I really struggle with being observed while eating, let alone having someone comment on how or how much I'm eating. So when K once again started apologizing, I snapped and very directly (and mildly harshly) told her that the food getting messed up by the restaurant wasn't her fault and us commenting on the food isn't a critique of her and we don't want her apologies.
But today wasn't all bad! After I got upset about plans falling through and not getting to leave the house, S offered to take me just to do something fun so we went to the bookstore together and went to look at plants. Which was lovely <3
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.
So it's looking like S should start looking for another job. His position isn't in danger, but the company is making a lot of decisions that will not only make his job way worse but also cutting part of their benefits at the same time. So less compensation for more work. And it's looking like things are only going to get worse. So he's gonna start looking for a new job.
On the one hand, he's in a good position to be job searching bc he's not worried about losing his job anytime soon so he can take his time and look for something better rather than scrambling to find anything. And this could be a good change for him! He's gradually grown more frustrated by his job over the years so it's time for something new.
On the other hand, Change. No matter what he gets as his next job, it will likely involve a significant schedule change which then changes my schedule and routines. We're also about to hit our out of pocket maximum for our insurance which would mean wouldn't have to pay for medical care for the rest of the year unless he changes jobs before then.
I just don't like all the unknowns. I know Change is coming, but I don't yet know the shape of the change nor how drastically my day to day will change.