u/fadedyouth85

So, I finally got out of that "oh god, everything is different, everything is bad, I'm very scared" spot I was in. And I decided to got outside, finally-
And it was not bad! I wore a T shirt (and my trusty fun swim trunks) and a hat, and I lathered on sunscreen, and I brought a bunch of water. I opted to not tube, but instead sit in the creek in a shady part, and it didn't feel horrible! I felt okay after, and I had fun, and I got a tiny bit of sunburn later (because I went outside in a tank top after with no sunscreen to chat with my mom) but even then I only got a minor sunburn! The biggest road block in that was re-explaining to my mom (who we were going to the creek with) that I had taken all the necessary preparations to be safe at the creek so we were good to go. But most importantly, it was fun and it was one of the few times since I got diagnosed that I didn't feel like my world was ending.

Got my LP on 6/15 and my back still hurts. I've resigned to Just Dealing With It til I can clear with my neurologist if I can have THC again (abstaining from any intoxication until my neuro appointment) but sometimes I bend or move and that shit really tweaks out! I don't take tylenol all the time because I'm a bit stubborn and I keep if for when I have a headache. Also, desk chair solution recs?

So, I'm over the initial shock. I had my LP (opening pressure was 42), got my meds, cried a lot. Everyone's advice was helpful. Now, I'm thinking long term.
Here are, unfortunately, my favorite activities:
- Computer Video Games
- Swimming in the ocean and visiting the beach
- tubing/paddleboarding in the local river
- going to the Renaissance Faire, in costume of course
Obviously, 90% of these involve the sun, being outside, and physical activity. But, Diamox says avoid prolonged direct sunlight, and I'm a little worried about the physical activity. I don't want to give up on who I am and what I like because of this condition and my meds-
So I'm being strong, and I'm asking what you guy's tips are to work around it. What can I do to beat the heat and sun? How annoying is physical activity with this? I'll consult with neurology at my next appointment July 17th but I don't know if I can get through the next month without my beautiful local river...

I just got diagnosed. Like, literally was just discharged 6 hours ago and took my first diamox dose today. Lumbar Puncture (x-ray guided) happening monday. Doctor said I have a classic presentation.

I'm really scared. It just feels like so much- they took blood what felt like a million times, and after being so used to hearing from doctors and ERs "Woah yeah I don't know or really care whats wrong with you" having a straight up answer was kind of alot. Atleast, it was something I really wasn't used to. They tried a Lumbar Puncture bedside. That was also scary. I think they hit some stuff, I yelled and apparently squirmed too much. That sucked, but I'm trying not to let that scare me too much for monday, but thats not working I'm pretty scared.

I have blind spots in both eyes- that was my symptom that prompted me to go to the eye dr then the hospital. I'm a writer and also a seeing human person, so the prospect of going blind is terrifying.

I took my first dose of diamox before I went in the car to go home. It didn't hurt, but everything felt weird and i felt a little car sick at points. Thats my fault, but still, a lot.

And when I got home, I moaned and groaned and hugged my childhood stuffed animal because I developed a headache and everything just felt so big.

Can someone just tell me it's going to be OK? Tell me how much better the X-Ray LP is, and how you got used to your meds, and dropped the pounds they wanted you to and felt better? Bonus points for anyone who later had a kid, because I'm worried about that later in my life. Everything just feels so big and scary, and I just need someone who's gone through this to tell me it's gonna be okay.

Thanks guys.
UPDATE: Bedside Lumbar Punctures are CRAZY unnecessarily horrible compared to a X-Ray LP, X-Ray LP took less time and was relatively painless (besides some minor bumps and the lidocaine)

I spent an hour last night troubleshooting on my own, so I'm posting it on reddit so no one else has to do that.
If you are getting a "No Suitable path can be found to the station" message on your train, and all your stations and signals are pointed the correct way, and all your track is there, I have the answer.
It's your wheels. If you wrench your wheels to another size, even though they look like they fit on the track better, it WILL COUNT IT AS WRONG. and it WILL NOT LET YOU FREAKING USE A TRAIN SCHEDULE. You HAVE to put it back to the GOOFY AHH LOOKING WHEELS.
I'm a grown adult and should not be crashing out about this, but it was very annoying. If anyone has a solution to making the wheels actually fit the track without breaking the ish in neoforge 1.21.1, please tell me. Thank you.