#csf leak

[squidbian-ink]

made this comic for my online class about how I shower/bathe with my current disability/illness. people seemed to really like it so here ya go lol

help me with ongoing medical bills :)

also, quick explanation for what a csf leak is if anyone needs it:

A CSF leak is when a small amount of brain fluid escapes your spine every time you're upright, causing your brain to literally get sucked into your spinal column if you try and sit or stand up. The only way to relieve symptoms from this condition is to remain flat at all times.

theoretically it can be 'cured' if you find the hole where the fluid is leaking from, but considering a hole as tiny as 1mm can cause symptoms, leaks can often be quite lengthy and challenging to treat. The average DIAGNOSTIC wait time alone is 13 months.

I'm personally at 18 mnths with a clinically suspected but not imaging confirmed leak. yaay :')

[3liza]

[taylortut]

man it's so great not having a constant headache after over half a year with one. i wish i could share the post-fibrin occlusion joy with all of you. instead i will write fic in which The Character suffers

[whatshouldwecallchronicillness]

When it actually shows up on the scan...

[ellibauers]

Just wrote an essay & got dressed for a job interview. Guess where I'm going? (Not a job interview, LOL).

...

Doctor Appointment. I'm anxious like I was anxious a day before I had to do a presentation in front of the class. I feel powerless, like I'm forced into situations against my will & what I'm being forced to do is pointless, to me, a waste of my time. For some reason, preparing for the doctor brings up the lack of autonomy I felt as a child.

I wrote everything down as short & simple as possible while still using medical language. Bullet points to hopefully make it feel like there's less to read. I need to keep my doctors attention.

One sheet of what I expect to receive from this appointment.

Second, the symptoms & quality of life I am experiencing that lead to these concerns.

I am well dressed, softly but mature. Hopefully, to be taken seriously.

Still, I am doubtful & filled with dread. I can't help but feel terrified that after all this effort, thoughtfulness, clear & precise communication that I will still leave the appointment feeling unheard & dismissed. The deep anger I feel for the discrimination against women in medicine, the lack of respect makes me want to scream. It's something I deeply struggle to understand. Begging for medical attention makes you feel so small. Only people who have experienced it for themselves will truly understand.

Why do people become "doctors" who don't actually want to be doctors? (Rhetorical💲💰💸🤑). If it wasn't that when they started & they lost their empathy over time, then they need to take responsibility for themselves & change professions.

Leaving in 30 minutes, I am sick to my stomach with anxiety. I want to cry.

[trisozai]

" Transabled people just want to be disabled for aesthetics ! "

My body is falling apart and I don't have a doctor I'm comfortable with to help me

[oxymoronicalien]

The “no yeah im fine” to googling csf leak symptoms pipeline

[shyyycatsblog]

Just found out there's a 50/50 chance I need brain surgery 🥴