Thunderclap headaches.
6 hours in the ER.
Still not believed.

This week broke something in me—and I wrote it anyway.

🖤 linktr.ee/skylanarissa

#ThunderclapHeadache #Migraine #MigraineDisease #Disability #DisabilityAdvocate #ChronicIllness

https://dreamingofdragonscom.wordpress.com/2026/03/28/saturday-health-update-hospital-trips-bruises-and-thunderclap-headaches/

I'm sitting here taking my morning meds while watching a video about a judge who flamed out the last part of their career because of addiction to painkillers.

So I'm thinking this has got to be a lot for someone to reach that point and be crashing their car into trees and stuff and...I mean...it is a lot.

But I think It also really kind of drives home that whole #chronicpain / #chronicillness thing when I see that I'm literally taking two times the amount that this person was taking who seems to be physically larger than I am and not only does this not impair me but it enables me to function.

It's why I get so angry at blanket statement on the evils of certain medications and treating everyone as if they are one pill away from becoming an addict. I've stopped taking these pills before after being on them for years at a time and yeah, it sucks, but not because of withdrawal symptoms. It sucks because I go back to being in pain constantly. I can't sleep, I can't walk. I would definitely not get behind the wheel of a car as that amount of pain would make me too distracted and unsafe for driving.

It makes me so angry when I hear people say things like "X Medication is absolute evil!" It has nothing to do with a specific med, it has to do with doctors being too busy to adequately monitor their patients who need long-term pain management and many times don't have the time to monitor patients who need the medium term management which is how you end up with people who were once OK "suddenly becoming addicted."

It wasn't sudden, it was gradual, predictable, and the people who needed to be paying attention were too busy to do so. It is a systemic failure, not a personal weakness.

They don't have someone there, helping them transition from the massive hurt to the smaller hurts and medicating those adequately so they don't panic and go back onto the med that worked for them. All of that flows right back up to nurses being underpaid, hospitals being under-staffed, doctors being spread criminally thin.

In a way I'm very lucky with the source of my pain, all I have to do is show an X-ray and suddenly doctors eyes go very wide and they wonder how I'm not in a wheelchair. Me too fam, me too. My ailment is only invisible to anyone looking at me from the outside, but that I can handle.

Yes there are doctors that over-prescribe and there are meds that used to get prescribed even when they were not needed. That fact is not mutually exclusive with the fact that there are people out there who do need medications like this. It is exhausting having that conversation time and again, I suspect I am not alone in that feeling.

Pills do not have the capacity for evil but Capitalism most assuredly does.

Total crash out today, after overdoing it on every front yesterday. So, apart from doing most of the dishes (I stopped when I got bored) I've felt useless.

I've not even managed 2000 steps today. My #fibromyalgia downturn in recent months has also left me feeling heavier. I'm not huge or anything, but I also daren't weigh myself.

I'll give myself another week, two max, then try to reduce food again. But energy crashes are still bad, which is a concern.

#chronicillness

The worst thing about having a reasonably rare genetic heart condition is that it's often difficult to find other people to go "hey, is this normal" to, when your EP tends to focus on the clinical presentation rather than symptom management.

The second worst thing is going from having all the energy in the world, to having none and feeling really, really bad.

Yes, I'm in that second phase right now, and work isn't done for the day. Yes, it's my usual Friday exhaustion trough, exacerbated by being AuDHD.

But... I ... am wording bad right now. #chronicIllness #heart #health #LongQT

Today's news + what you can do about it. Thread 👇

📰 1 curated stories on disability rights, accessibility & workers' rights.

🔥 Today's Headlines:

1. The Disability Bulletin

👉 Today's news: https://3mpwrapp.pages.dev/blog/#curated-daily

#3mpwrApp #DisabilityRights #Accessibility #ChronicIllness #WorkersRights #Canada #DisabilityPride

RE: https://mastodon.social/@eff/116302485813032882

Ewwww. Just FYI. Be Vigilant!
“ WISeR model’s prior authorization decisions often result in delays or denials of care, the foundation said, which can sometimes be classified as discriminatory or “inappropriate” denials for medical care.”
#usHealthcare #AI #chronicillness (heads up)

Red zone week.
New pain.
Still here. 🐾

Service dog reporting: we survived it together.
Soft things still matter. 💜

#ChronicIllness #ServiceDog #Disability #LunaTheServiceDingo
linktr.ee/skylanarissa

https://dreamingofdragonscom.wordpress.com/2026/03/27/luna-takeover-%f0%9f%90%be-red-zone-week-the-sacred-art-of-staying-close/