Myia Laureen Myia’s IIH Journey

I was diagnosed with Idopathic Intercranial Hypertension
Other names are Pseudo Tumor Cebri, Fake brain tumor.
It’s NOT a mass, it’s fluid an tricks my brain into thinking I have an actual mass. My spinal fluid gets high an swells my brain an pushed on the back of my eyes an I go blind at times. I have all the symptoms of an actual tumor,
Seizures, nausea, blind, personality changes, migraines, drowsiness, fatigue, memory loss an vomiting. Along with 
hallucinations an ringing in my ears an causes me off balance.
Im rare of the rare because my mom has same tumor an it’s hereditary.    I’m putting this up for awareness of IIH and how rare it is an we have alot of travel expenses coming up. Mom can’t work because I can’t be left alone so it’s one income. 
Our car isn’t in the best shape for all travel to find me the right team of Drs.   We will be all over MN and Mayo an hopefully down to U of Iowas to the researcher that helped my mom. 
Medical insurance doesn’t cover alot anymore due to Covid 
So we have to do alot ourselves.  I need supplies for stuff they don’t cover at all.   Mom spends all day on phone trying to get me help so pray for her it makes me sad she’s gotta go thru all this again.  😭 Took her 2 yrs to get help.  She’s also caretaker to someone else in the house.   
I live in the dark, my eyes burn in the light. I wear sunglasses when I can but the pair I need is alot of money.  Focal seizures are happening.  My life will be full of spinal taps because there’s no cure.  The Neurologist said yesterday this is MORE a then IIH so there could more things.  He’s worried about blood vessels in my brain also
I have my room blocked off from light am if I go somewhere we have to find out lighting because I could have a seizure. 
I can’t really eat, I’m loosing weight everyday. There’s still so many tests to be done yet.  I had Covid in September an some of the after effects what I have going on now mimic a lot. 
I can’t take pain meds or over counter medication, it builds more fluid so there’s nothing for pain.  I have my good times but it don’t last long.  I’m just weak an tired.  I try to be happy but this is very depressing laying still all day and can’t move cus of pain.   I have my cat Jake who’s very cool next to me all day an night.  Moms next to me a lot, almost to much ( ha ha mom) 
I hear the news until I can’t stand it anymore so I know life is hard for everyone an I’m not trying to selfish but we need help.  Please pray an don’t stop this is just beginning I’m told
If you wanna donate my mom has Venmo, If not pass this on. It’s a real thing and I’m just starting.  We pray I will get a shunt asap an get back to life school an my friends. 
Thanks for reading My journey.   Venmo is in gallery 
I like people checking on me an Mom  
Thank you all as you know Turtle Kisses