That Marfan Girl
thatmarfangirl.bsky.social
That Marfan Girl
@thatmarfangirl.bsky.social
#MarfanSyndrome | #POTS | #ChronicPain | #DuralEctasia | #PectusExcavatum
This isn't my first time going through this process, so hopefully I can get reinstated without too much trouble. 😩 So yeah! Cheers to a year's worth of MyChart notes. (Excluding like 30 PT appointments)

#chronicillness #disability #marfan #chronicpain
February 19, 2025 at 6:42 PM
Reposted by That Marfan Girl
It's the last day to enter our #giveaway! Win a free pet bowtie based off one of four #dnd classes.

We'll be drawing tomorrow.

bsky.app/profile/ligh...
Win a #dnd inspired bowtie for your furry companion!

To enter:
1. Follow @lightheartadv.bsky.social
2. Repost this post
3. Share a photo of your dog or cat
4. Bonus entry for following us on Etsy: lightheartadventures.etsy.com (share screenshot after you followed)

Winner will be drawn Feb 14 🧵
February 13, 2025 at 6:58 PM
I guess one advantage of fighting through chronic illness all your life is that scholarship essays just write themselves. 😅

Why yes, I have gone through tough times. Where should we start?
January 17, 2025 at 5:53 PM
Just had the classic "things look good!" appointment with my surgeon. Like ok, great. I'm glad the local docs were wrong. But then why does it still hurt so bad?! 😭

He did at least have suggestions on treatments to try, but ugh. So tired of #chronicpain.
November 18, 2024 at 4:03 PM
Reposted by That Marfan Girl
When a healthy person gets sick with acute illness - they assume it’ll pass. It never occurs to them they may feel sick FOREVER.

Many of us with chronic illness feel like we have the flu 24/7. It never relents.

We can’t “just live life”. We must protect our baseline.
October 8, 2024 at 3:09 AM
Don't you just love when you wake up with a new injury because you slept in a weird position? 😩

#Cconnectivetissuedisorder
October 20, 2024 at 6:23 PM
Hello Blue Sky! I'm Courtney, a disabled, chronically ill gal bringing awareness to Marfan Syndrome, POTS, and all the fun comorbidities that go with them.

Looking for more chronically ill folks to connect with!
October 17, 2024 at 10:40 PM