🎄ElfieJo💕
@nomadicambitions.bsky.social
Music Junkie. Sometimes Artist & Prop Maker. Writer. Chronically Chaotic and Chronically ill.
33. She/Her. #IIH. All things Nomadic. 🇮🇹
Website & Etsy 👇
https://beacons.ai/nomadicambitions
33. She/Her. #IIH. All things Nomadic. 🇮🇹
Website & Etsy 👇
https://beacons.ai/nomadicambitions
Pinned
🎄ElfieJo💕
@nomadicambitions.bsky.social
· May 14
My Rare Brain Disease and Me
“….we need to stay on top of this, if it worsens you can permanently lose your vision….”His lips keep moving but all I hear is the light crackling above me and the steady beat of my pulse in my ear. P...
www.nomadicambitions.com
Hi.
This still feels like the plot of a Sick Lit novel, & not my life, but it is in fact reality.
A few weeks ago I was diagnosed with a rare brain disease, IIH.
I’m not terminal, but if it progresses, I can lose my vision and/or need brain surgery.
I’m terrified and trying to remain optimistic.🫠
This still feels like the plot of a Sick Lit novel, & not my life, but it is in fact reality.
A few weeks ago I was diagnosed with a rare brain disease, IIH.
I’m not terminal, but if it progresses, I can lose my vision and/or need brain surgery.
I’m terrified and trying to remain optimistic.🫠
I love the smell of snow, feels and reminds me of home. 🥰
More is expected and I’m so thrilled.
More is expected and I’m so thrilled.
January 24, 2026 at 10:03 PM
I love the smell of snow, feels and reminds me of home. 🥰
More is expected and I’m so thrilled.
More is expected and I’m so thrilled.
Also I’m going to start referring to my stent by its government name, Zilver.
Zilver doesn’t like direct sunlight. It feels akin to a fresh tattoo in the sun as you drive, but in my brain. Iykyk.
Zilver also doesn’t like over the ear headphones anymore, which are my fav so that’s fun. 🫠
Zilver doesn’t like direct sunlight. It feels akin to a fresh tattoo in the sun as you drive, but in my brain. Iykyk.
Zilver also doesn’t like over the ear headphones anymore, which are my fav so that’s fun. 🫠
January 23, 2026 at 12:06 AM
Also I’m going to start referring to my stent by its government name, Zilver.
Zilver doesn’t like direct sunlight. It feels akin to a fresh tattoo in the sun as you drive, but in my brain. Iykyk.
Zilver also doesn’t like over the ear headphones anymore, which are my fav so that’s fun. 🫠
Zilver doesn’t like direct sunlight. It feels akin to a fresh tattoo in the sun as you drive, but in my brain. Iykyk.
Zilver also doesn’t like over the ear headphones anymore, which are my fav so that’s fun. 🫠
I’ve made it through my first day back at work after surgery.
And with that I say, Goodnight, Texas.
And with that I say, Goodnight, Texas.
January 23, 2026 at 12:03 AM
I’ve made it through my first day back at work after surgery.
And with that I say, Goodnight, Texas.
And with that I say, Goodnight, Texas.
Reposted by 🎄ElfieJo💕
Because of course. As is tradition when his state may need him and while our country is in turmoil
Senator Ted Cruz (R-Texas) was spotted earlier today, January 20, 2026, on a plane heading to Laguna Beach as the state of Texas braces for a rare ice threat and arctic cold front.
January 21, 2026 at 6:02 AM
Because of course. As is tradition when his state may need him and while our country is in turmoil
I’m too empathetic for love triangles because I always feel bad for the guy who doesn’t get picked 😭🥺
January 20, 2026 at 7:16 PM
I’m too empathetic for love triangles because I always feel bad for the guy who doesn’t get picked 😭🥺
My recovery has been just PLOWING through kdramas and sleeping and I’m loving it.
I do go back to work at the end of next week and am mildly concerned I may not be ready but eh. We cross that bridge when we get there.
I do go back to work at the end of next week and am mildly concerned I may not be ready but eh. We cross that bridge when we get there.
January 19, 2026 at 1:24 AM
My recovery has been just PLOWING through kdramas and sleeping and I’m loving it.
I do go back to work at the end of next week and am mildly concerned I may not be ready but eh. We cross that bridge when we get there.
I do go back to work at the end of next week and am mildly concerned I may not be ready but eh. We cross that bridge when we get there.
Feeling defeated.
Having tons of pressure headaches today.
I know the surgery was only a 50% chance of reduction in those but omg, just a BAD day for em. Hoping it’s just a bad day and not a full swing back to where I was. Still got technically 6-18 months for the implant to fully adhere anyways.😭
Having tons of pressure headaches today.
I know the surgery was only a 50% chance of reduction in those but omg, just a BAD day for em. Hoping it’s just a bad day and not a full swing back to where I was. Still got technically 6-18 months for the implant to fully adhere anyways.😭
January 14, 2026 at 2:29 AM
Feeling defeated.
Having tons of pressure headaches today.
I know the surgery was only a 50% chance of reduction in those but omg, just a BAD day for em. Hoping it’s just a bad day and not a full swing back to where I was. Still got technically 6-18 months for the implant to fully adhere anyways.😭
Having tons of pressure headaches today.
I know the surgery was only a 50% chance of reduction in those but omg, just a BAD day for em. Hoping it’s just a bad day and not a full swing back to where I was. Still got technically 6-18 months for the implant to fully adhere anyways.😭
Texas hasn’t had any snow/ice so far this January, which is HIGHLY unusual based off of the past few years, so I’m theorizing we’re in for one hell of a summer. 😭🫠
January 13, 2026 at 11:39 PM
Texas hasn’t had any snow/ice so far this January, which is HIGHLY unusual based off of the past few years, so I’m theorizing we’re in for one hell of a summer. 😭🫠
Reposted by 🎄ElfieJo💕
Coughing and sneezing with this cerebral implant is somethin else. Lmao.
a close up of a person holding a cat in their hand
Alt: a close up of a cat holding their head in pain
media.tenor.com
January 9, 2026 at 6:33 AM
Coughing and sneezing with this cerebral implant is somethin else. Lmao.
Week one post op neurosurgery down.
I’ve run out of meds so the pain is finally hitting me, but I’m still feeling pretty optimistic about everything.
So far I’ve managed to reduce meds to treat my condition by 50% and seen up to and 80% reduction in symptom reduction.
I’ve run out of meds so the pain is finally hitting me, but I’m still feeling pretty optimistic about everything.
So far I’ve managed to reduce meds to treat my condition by 50% and seen up to and 80% reduction in symptom reduction.
January 8, 2026 at 12:38 AM
Week one post op neurosurgery down.
I’ve run out of meds so the pain is finally hitting me, but I’m still feeling pretty optimistic about everything.
So far I’ve managed to reduce meds to treat my condition by 50% and seen up to and 80% reduction in symptom reduction.
I’ve run out of meds so the pain is finally hitting me, but I’m still feeling pretty optimistic about everything.
So far I’ve managed to reduce meds to treat my condition by 50% and seen up to and 80% reduction in symptom reduction.
End of Christmas sales just mean I get to buy all the cinnamon candles.
(Aka: I only like one particular cinnamon blended scent, from one store. I’m so picky.)
(Aka: I only like one particular cinnamon blended scent, from one store. I’m so picky.)
a close up of a man 's face with the words my preciousss written in yellow
Alt: a close up of a man 's face with the words my preciousss written in yellow
media.tenor.com
January 6, 2026 at 10:35 PM
End of Christmas sales just mean I get to buy all the cinnamon candles.
(Aka: I only like one particular cinnamon blended scent, from one store. I’m so picky.)
(Aka: I only like one particular cinnamon blended scent, from one store. I’m so picky.)
Reposted by 🎄ElfieJo💕
I'm still six feet from the edge. Creed, please advise.
I'm still wondering if you ever gave me up. Rick Astley, please advise.
I'm still believin'. Journey, please advise.
January 5, 2026 at 9:19 PM
I'm still six feet from the edge. Creed, please advise.
Oooo new season coming soooooon
Noah Wyle has won Best Actor in a Drama Series for ‘THE PITT’ at the Critics Choice Awards.
January 5, 2026 at 2:00 AM
Oooo new season coming soooooon
Reading over some of my chart notes from the hospital and so happy to see “normal weight” on these notes.🥺
Y’all don’t understand. The gaslighting around even getting to neurosurgery bcuz some doctors said this condition was associated with weight b4 I proved them it wasn’t for me was agonizing.
Y’all don’t understand. The gaslighting around even getting to neurosurgery bcuz some doctors said this condition was associated with weight b4 I proved them it wasn’t for me was agonizing.
January 5, 2026 at 1:41 AM
Reading over some of my chart notes from the hospital and so happy to see “normal weight” on these notes.🥺
Y’all don’t understand. The gaslighting around even getting to neurosurgery bcuz some doctors said this condition was associated with weight b4 I proved them it wasn’t for me was agonizing.
Y’all don’t understand. The gaslighting around even getting to neurosurgery bcuz some doctors said this condition was associated with weight b4 I proved them it wasn’t for me was agonizing.
Got a gut wrenching notification today that one of my doctors passed away yesterday in a car accident.
He was young, genuinely so caring, took time to listen and was one of the best providers I’ve had that made me feel human and not a cog in the machine.
Having a hard time understanding this one.
He was young, genuinely so caring, took time to listen and was one of the best providers I’ve had that made me feel human and not a cog in the machine.
Having a hard time understanding this one.
January 4, 2026 at 4:03 AM
Got a gut wrenching notification today that one of my doctors passed away yesterday in a car accident.
He was young, genuinely so caring, took time to listen and was one of the best providers I’ve had that made me feel human and not a cog in the machine.
Having a hard time understanding this one.
He was young, genuinely so caring, took time to listen and was one of the best providers I’ve had that made me feel human and not a cog in the machine.
Having a hard time understanding this one.
Still can’t believe I’m bionic now.
They forgot to give me my card but I get a fancy deal that I have to show for MRI’s, CT’s, Airports, all kinds of fun stuff.
They forgot to give me my card but I get a fancy deal that I have to show for MRI’s, CT’s, Airports, all kinds of fun stuff.
January 3, 2026 at 3:36 AM
Still can’t believe I’m bionic now.
They forgot to give me my card but I get a fancy deal that I have to show for MRI’s, CT’s, Airports, all kinds of fun stuff.
They forgot to give me my card but I get a fancy deal that I have to show for MRI’s, CT’s, Airports, all kinds of fun stuff.
Officially discharged from hospital.
New year, new upgraded brain. I is bionic now.
Happy 2026 to me.
New year, new upgraded brain. I is bionic now.
Happy 2026 to me.
January 1, 2026 at 8:17 PM
Officially discharged from hospital.
New year, new upgraded brain. I is bionic now.
Happy 2026 to me.
New year, new upgraded brain. I is bionic now.
Happy 2026 to me.
Howdy from Neuro ICU.
Stent was placed. Drugs wearing off, but Feeling okay so far just a headache!
The surgeons said I did so well they just placed the stent while I was awake. It wasn’t as bad as I thought.
🥂NEW YEAR. NEW BRAIN.🥳
So glad I had the courage to do this. Hope this helps me!
Stent was placed. Drugs wearing off, but Feeling okay so far just a headache!
The surgeons said I did so well they just placed the stent while I was awake. It wasn’t as bad as I thought.
🥂NEW YEAR. NEW BRAIN.🥳
So glad I had the courage to do this. Hope this helps me!
December 31, 2025 at 6:35 PM
Howdy from Neuro ICU.
Stent was placed. Drugs wearing off, but Feeling okay so far just a headache!
The surgeons said I did so well they just placed the stent while I was awake. It wasn’t as bad as I thought.
🥂NEW YEAR. NEW BRAIN.🥳
So glad I had the courage to do this. Hope this helps me!
Stent was placed. Drugs wearing off, but Feeling okay so far just a headache!
The surgeons said I did so well they just placed the stent while I was awake. It wasn’t as bad as I thought.
🥂NEW YEAR. NEW BRAIN.🥳
So glad I had the courage to do this. Hope this helps me!
If you see this, post a random fact about yourself.
I once made the Dallas Morning News as a kid when a small local theater opened up acting classes. I have the picture, but lost the article. Either way, I felt famous and yes it did start a life long love for theater/ the arts. 💅
I once made the Dallas Morning News as a kid when a small local theater opened up acting classes. I have the picture, but lost the article. Either way, I felt famous and yes it did start a life long love for theater/ the arts. 💅
If you see this, post a random fact about yourself
When I got my ears pierced the first time in 7th grade, I got so nervous I almost threw up
When I got my ears pierced the first time in 7th grade, I got so nervous I almost threw up
If you see this, post a random fact about yourself
One time I ate a hot dog at the Alamo
One time I ate a hot dog at the Alamo
December 30, 2025 at 6:01 AM
If you see this, post a random fact about yourself.
I once made the Dallas Morning News as a kid when a small local theater opened up acting classes. I have the picture, but lost the article. Either way, I felt famous and yes it did start a life long love for theater/ the arts. 💅
I once made the Dallas Morning News as a kid when a small local theater opened up acting classes. I have the picture, but lost the article. Either way, I felt famous and yes it did start a life long love for theater/ the arts. 💅
So uh I guess I can officially say, I am proceeding with neurosurgery on Wednesday morning.
I’m still obviously terrified, but I have to go into this knowing it’s the right move. Idk what recovery looks like, idk what’s ahead. But this has to lead to a better quality of life for me.
I can do this.
I’m still obviously terrified, but I have to go into this knowing it’s the right move. Idk what recovery looks like, idk what’s ahead. But this has to lead to a better quality of life for me.
I can do this.
December 30, 2025 at 12:49 AM
So uh I guess I can officially say, I am proceeding with neurosurgery on Wednesday morning.
I’m still obviously terrified, but I have to go into this knowing it’s the right move. Idk what recovery looks like, idk what’s ahead. But this has to lead to a better quality of life for me.
I can do this.
I’m still obviously terrified, but I have to go into this knowing it’s the right move. Idk what recovery looks like, idk what’s ahead. But this has to lead to a better quality of life for me.
I can do this.
Not sure what’s going on, hoping for the best but only so much I can control.
Pre op labs for surgery still happening tomorrow morning regardless.
Pre op labs for surgery still happening tomorrow morning regardless.
December 29, 2025 at 2:49 AM
Not sure what’s going on, hoping for the best but only so much I can control.
Pre op labs for surgery still happening tomorrow morning regardless.
Pre op labs for surgery still happening tomorrow morning regardless.
Took down 98% of the exterior decor today.
Depressing.
But it had to be done. 😭
Depressing.
But it had to be done. 😭
December 27, 2025 at 12:42 AM
Took down 98% of the exterior decor today.
Depressing.
But it had to be done. 😭
Depressing.
But it had to be done. 😭
Mannnnn. Got through all the eps of Stranger things. Bit upset the finale is on surgery day but guess my surviving that gives me something to look forward to?
December 26, 2025 at 8:09 AM
Mannnnn. Got through all the eps of Stranger things. Bit upset the finale is on surgery day but guess my surviving that gives me something to look forward to?
The love that Vecna’s voice is Jaime’s real voice. Super cool. Been a huge fan of Jamie’s for a long time. He has been perfect for this role.
December 26, 2025 at 5:53 AM
The love that Vecna’s voice is Jaime’s real voice. Super cool. Been a huge fan of Jamie’s for a long time. He has been perfect for this role.