u/saraphin67

Hey everyone, I’m sharing about the website for sharing our leak stories again, I post here every few weeks or so as I know not everyone sees every post. If you haven’t seen it yet I hope you check it out. Thank you!

Reading through the stories submitted on the website has been… a lot, in the best and hardest ways.
There’s so much that people carry that never gets seen.

That’s really what this project is all about, making those experiences visible to the public and doctors.

If you’ve thought about sharing your story but aren’t sure…

It doesn’t have to be perfectly written.
It doesn’t have to be “resolved.”
It doesn’t have to look like anyone else’s.
It can be at any stage, beginning, middle, end, and everything in between.

Ongoing, complicated, uncertain, all of it belongs!

Thank you SO SO much to everyone who has shared so far

The space exists because of you. 💜

https://spinalcsfleakstories.com

Hey there, wondering if anyone has the same problem and knows how to fix it-the reminders on my phone and on Apple Watch (11) are never syncing properly. This happened with Apple Watch 6 and then when I bought the 11 it did actually work for a while. Now it’s sadly no longer longer working. If I click something finished on phone in reminders it will still pop up on watch to remind me and vice versa!!! It drives me nuts. Thank you!

Hi again everyone,

Just sharing again about the new website for sharing your leak stories!

If you’ve been meaning to share your story but haven’t had the energy yet, I get it, I know how much it takes just to get through the day sometimes, so please don’t feel like it has to be long or perfectly written.

Even a few sentences is enough.

I created Every Drop Counts: Sharing Your Spinal CSF Leak Stories so that the full range of experiences is visible, not just the most “straightforward” ones. Ongoing, messy, unresolved, improving, and successes, all of it matters. I want this space as a place for visibility, for the public and for doctors to better understand what this actually looks like across different people.

And you can stay completely anonymous if you prefer.

If it’s something you still want to do, you can submit here:

https://spinalcsfleakstories.com/

And if not right now, that’s okay too! The space will be here whenever you’re ready 💜 Thanks to all who have shared so far, I really appreciate it, I’m passionate about this project and getting our stories heard!!