Jacy Sonne ♿️
@jacysonne.bsky.social
Disability Advocacy ♿️ #FMMECFS #Migraineur #POTS #Dystonia #Spoonie #MyotonicDystrophy
Rare brain tumor survivor
Too many med dx to list here
Domestic Violence and the Disabled
Pro: Science
LGBTQ
BIPOC
AAPI
Rare brain tumor survivor
Too many med dx to list here
Domestic Violence and the Disabled
Pro: Science
LGBTQ
BIPOC
AAPI
Day 3 isn't looking good either and a side of another MD appointment. Doctor visits 2 days in a row is exhaustive.
December 4, 2025 at 6:25 AM
Day 3 isn't looking good either and a side of another MD appointment. Doctor visits 2 days in a row is exhaustive.
Lol and that's why I was locked out of this account, for months. I failed to remember it had a separate email, and kept trying to use the original email. A hundred emails later, phone calls...I had to set up another account and plead with the bsky gods to help a girl out. 😭
December 4, 2025 at 6:18 AM
Lol and that's why I was locked out of this account, for months. I failed to remember it had a separate email, and kept trying to use the original email. A hundred emails later, phone calls...I had to set up another account and plead with the bsky gods to help a girl out. 😭
I've muted a lot of political accounts and made every attempt to follow the disability community. You can set up a secondary account under your primary account and just follow those in the LC community.
December 3, 2025 at 11:43 PM
I've muted a lot of political accounts and made every attempt to follow the disability community. You can set up a secondary account under your primary account and just follow those in the LC community.
Have had past MDs who weren't my primary or care team call me a drug addict, when I'm a pain patient. I demanded to see the ultimate authority (a couple MDs referred me to adxn med.) Head of the department cleared me as being a #CPP not an addict.
December 3, 2025 at 10:51 PM
Have had past MDs who weren't my primary or care team call me a drug addict, when I'm a pain patient. I demanded to see the ultimate authority (a couple MDs referred me to adxn med.) Head of the department cleared me as being a #CPP not an addict.
I put dx and/or symptoms in writing, because I feel like they're not listening, at all. One Kaiser MD told me save it for my dissertation, and handed it back to me.
December 3, 2025 at 10:47 PM
I put dx and/or symptoms in writing, because I feel like they're not listening, at all. One Kaiser MD told me save it for my dissertation, and handed it back to me.
Samesies and on day 2.
My heart goes out to you.
My heart goes out to you.
December 3, 2025 at 10:43 PM
Samesies and on day 2.
My heart goes out to you.
My heart goes out to you.
As a chronic pain patient with a pending muscle disease diagnosis...I'm not chopping onions, just wiping a tear, because caring MDs are hard to find. We have 0 palliative care MDs in my area.
December 3, 2025 at 9:55 PM
As a chronic pain patient with a pending muscle disease diagnosis...I'm not chopping onions, just wiping a tear, because caring MDs are hard to find. We have 0 palliative care MDs in my area.
Well done! We really need palliative care doctors right now.
December 3, 2025 at 9:51 PM
Well done! We really need palliative care doctors right now.
Still remember being in tears because family members with BPD, bipolar or schizophrenia, refused to take prescribed meds, and a psychiatrist told me you can't force people to take meds or stay on them. It's devastating for the patient, and loved ones that want to see them stabilized.
December 3, 2025 at 9:39 PM
Still remember being in tears because family members with BPD, bipolar or schizophrenia, refused to take prescribed meds, and a psychiatrist told me you can't force people to take meds or stay on them. It's devastating for the patient, and loved ones that want to see them stabilized.
Going back to early morning migraine fort as soon as I'm done at the doctor's office. My heart goes out.
December 3, 2025 at 7:15 PM
Going back to early morning migraine fort as soon as I'm done at the doctor's office. My heart goes out.
Naps are essential and I'd throw my Samsung over that...gently, because I'm disabled, don't sleep, and can't afford a new phone.
December 3, 2025 at 7:13 PM
Naps are essential and I'd throw my Samsung over that...gently, because I'm disabled, don't sleep, and can't afford a new phone.
If you had any idea how difficult obtaining the documentation proving they're a disabled person for accommodations, you'd delete this.
December 3, 2025 at 6:23 PM
If you had any idea how difficult obtaining the documentation proving they're a disabled person for accommodations, you'd delete this.
While I had 15 minutes extra for test or finals anxiety, I had to go back to the doctors for approval to be able to physically take a short break & walk around because sitting for long periods hurt my spine.
December 3, 2025 at 5:10 PM
While I had 15 minutes extra for test or finals anxiety, I had to go back to the doctors for approval to be able to physically take a short break & walk around because sitting for long periods hurt my spine.
Clearly, they've never known anyone with a disability accommodation, and the medical or MH documentation required just to get one. Then having to back to MD to be super explicit for each accommodation.
December 3, 2025 at 5:02 PM
Clearly, they've never known anyone with a disability accommodation, and the medical or MH documentation required just to get one. Then having to back to MD to be super explicit for each accommodation.
Nipples...but no pockets and a Smurf sweater?
December 1, 2025 at 6:33 AM
Nipples...but no pockets and a Smurf sweater?
$4.17 in SE washington State
November 30, 2025 at 11:04 PM
$4.17 in SE washington State
I have scoliosis too. My heart goes out. I've been telling multiple MDs my spine is messed up, and c-spine MRI confirmed. Now the process to get them to MRI my t-spine and lumbar. After genetic testing failed, would have to go out of town for muscle disease biopsy. Sighs.
November 30, 2025 at 7:38 PM
I have scoliosis too. My heart goes out. I've been telling multiple MDs my spine is messed up, and c-spine MRI confirmed. Now the process to get them to MRI my t-spine and lumbar. After genetic testing failed, would have to go out of town for muscle disease biopsy. Sighs.
I'm grandma age, so not risking that 🤣
November 30, 2025 at 7:29 PM
I'm grandma age, so not risking that 🤣
I hope he's better soon and sending all the healing vibes.
November 30, 2025 at 7:27 PM
I hope he's better soon and sending all the healing vibes.
It looks like plain elbow noodles.
November 30, 2025 at 1:07 AM
It looks like plain elbow noodles.