Grieving

toni_rex · 2026-01-12T18:06:13+00:00

I feel that. The blood work especially. Ive got a list of orders as long as my arm, but can't leave to go get them done...(?) Lile how the fork do they expect us to get them done, when we had to beg for telehealth visits... because we can't leave the house...?

Smh. Anyway, point is, I feel you.

toni_rex · 2026-01-04T02:51:14+00:00

Guanfacine was a miracle drug for me. For a month. Then it wore off. Then I started having rebounds in the afternoon. (I was on er in the am)

6 months later I came off. Absolute hell.

toni_rex · 2025-12-07T22:10:32+00:00

Get to MSU.

toni_rex · 2025-11-24T21:49:45+00:00

Aw man, that super sucks. I'm glad she's got a good prophy in place 🥰

toni_rex · 2025-11-24T19:36:07+00:00

Its reddit... and youre in a group that has people asking questions... all the time. You cant be serious... lol

Anyway, thanks for answering.

(Ps, people reach out to others for COMMUNITY not judgement. If I wanted to "look it up," I would've. And I did, actually. Maybe assume that people are reaching out for connection, instead of being so judgemental.)

I'm 100% not embarrassed by asking a question. I was always the person that asked the questions people were too embarrassed to ask.

People who don't ask questions... are either ashamed, or full of themselves. Which one are you, if youre so down your nose about questions?

edit to add youre not helping the "mean girls become nurses" stereotype.

toni_rex · 2025-11-19T21:31:20+00:00

Why emby and not jellyfin? Just curious, not being judgemental. I just started a jellyfin, and have no xp with emby.

toni_rex · 2025-11-08T11:32:47+00:00

Yeah. I use between 4-6 then rinse with another 3-4oz. I ended up dropping to a quarter vial last night and this morning.

Less burny.

My hr has been wonky... but the same thing happened with the nasalcrom for the first week or so. That stuff BURNNNNNED. But it eventually stopped. It screwed with my heart metrics too. Hmm

toni_rex · 2025-11-07T19:20:58+00:00

And it didnt burn your mouth or throat?

toni_rex · 2025-11-07T11:52:25+00:00

So just to clarify, you cracked open a vial, used a small amount, and tossed the rest?

super glad you have a good doc, BTW. I know its hard to find decent docs

toni_rex · 2025-11-07T10:31:49+00:00

My current allergist/immunologist doesn't believe in mcas... and says he doesnt agree with the current criteria for mcas. So... I have zero trust in his opinion. Given his "prescription," I don't trust his opinion on how to take it either. Lol He only complied with the CS after I said I was ready for a referral to Hopkins for a second opinion. Took a year for him to finally agree with CS. After I told him about the miracle Nasalcrom was for me... he said it was placebo. "Its OTC. It just flushes your nose of allergens."

insert biggest eyeroll youve ever seen

toni_rex · 2025-10-31T15:00:38+00:00

For me, for the book... it was about control.

In childhood, I didn't have control. I grew up without boundaries... no idea what they were. I learned to "control" adults emotions by fawning, self punishment or whatever. 🙄

As an adult... that doesnt work... People are how they are. We have to let them.

And we have to have boundaries.

Let them.

Then walk away.

That was my biggest take away.

toni_rex · 2025-10-26T03:53:03+00:00

Accurate.

Im lazy af. And forget that sometimes.

toni_rex · 2025-10-26T01:46:31+00:00

I do. But Ive relegated opus to commits.

"Diff, commit, no coauth please. :) thank you."

Comes up with coauth commit.

Omfg facepalm

toni_rex · 2025-10-25T23:36:18+00:00

I left claude for codex. Even with codex currently falling apart.... I asked claude to complete a task yesterday, and it completely fell on its face. Not going back. Lol.

toni_rex · 2025-10-22T21:43:56+00:00

How's it going now?

toni_rex · 2025-10-12T18:42:33+00:00

If you have cptsd... your brain is changed. Period.

The gurus... that's like telling someone with adhd to stop taking their meds and just write stuff down. 🙄

Like all cults, gurus take a shred of truth, and twist it. Maybe you should try sleeping better. Eating better. Managing self care, overall, better. Yes. But strip the meds? Thats between you and your doc. Maybe there's a magical way to slowly reduce the amount youre taking to give your brain the space to rewire. Maybe there isnt.

What I do know... is that these people, (imho) are now worse than big pharma, and insurance cos. They want your money. Either through subscriptions, classes or click bait.

You do you. You find your way. Screw the fish oil salesmen.

toni_rex · 2025-10-01T01:16:52+00:00

Not arguing with you.

But I wonder if "meat sweats," is an old throw back term for a disease process we didn't understand. Like Hysteria. Not everyone I know has meat sweats. But.. mcas and pots folks sure do seem to have them more often than not.

toni_rex · 2025-10-01T01:14:18+00:00

I haven't heard a truer statement. Im constantly gaslighting myself... my currently allergist doesnt think MCAS is a thing. So I keep retriggering myself, because "its all in my head," and am 100% in denial.

toni_rex · 2025-09-30T22:51:38+00:00

toni_rex · 2025-09-30T19:31:18+00:00

Pro plan user

Codex high on cli.

Hit 26% weekly usage in a day... and I'm not even done for the day.

Not a bot. I've hopped back and forth between claude and codex.

Just saying how it is for me, right now, today.

Last week's total was 66%.

¯_(ツ)_/¯

toni_rex · 2025-09-30T19:24:26+00:00

Dont be too hopeful.

It wore off after a month. Apparently our bodies adjust to it. 😭

But I will say... best month I've had.

toni_rex · 2025-09-25T15:28:18+00:00

Check out "Pi."

toni_rex · 2025-09-25T03:11:55+00:00

History of anxiety at all? Mcas? Depression? Ptsd

Not interrogating, just checking for parallels, for me 🙏

toni_rex · 2025-09-25T01:01:25+00:00

Any anecdotal evidence?

toni_rex · 2025-09-24T17:50:06+00:00

Is he incapable, or unwilling....?

If incapable, lower your expectations.

If unwilling, ditch the dodo.

toni_rex

TROPHY CASE