Last Friday I came home after yet another 16 days admission. My potassium and phosphate levels were stable so they felt comfortable sending me home waiting for my neurosurgery appointment next week. I'm still in so much pain, extremely nauseous and can't hold anything down (so it's probably just a matter of time I'm getting dehydrated and hypokalemic again and need to be readmitted). My head hurts so so bad it's almost unbearable 😭and I've lost so much weight from not being able to hold anything down. Some days I feel like giving up, I really don't know how much longer I can do this. I almost begged them to do an lumbar puncture, but they refused because of the pulmonary embolisms.. they think it's a to big of a risk to stop the blood thinners to do an LP.. but really something needs to be done because I can't take this pain any longer. I'm so sick and tired of this. I just don't understand why they let me wait for 3 weeks because my own neurosurgeon isn't available and the other ones just don't know anything about IIH and refuses to help. My whole day consist about taking pain meds, taking 3 different anti emetics (2 of them make me sleepy like hell, like all I can do is sleep all day). I really need I sign that it will get better, that it won't be like this forever. All I can hope is that they will take action next week and not saying to wait it out again like they said last time, because this really is taking its toll on my body but also on my mental state. I feel like I'm losing my mind. Even though I'm in so much pain I'm trying to keep up with school and go to clinicals for half shifts, because at home I feel like going crazy. ++++++++++++++++++++++++++++++++++++++++ #chronicillness #chronicpain #invisibleillness #portacath #ivpotassium #ivphosphate #intracranialhypertension #kidneydisease #kidneyproblems #myheadhurts #headachefromhell #totiredtofunction #totiredtosleep #anticoagulant #antiemetics #ineedacure #hospitallife #miracleshappen #believeinhope #dowhatyouthinkyoucantdo #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #shuntlife #shuntproblems #vpshunt #lpshunt #nursingstudent #lumbarpuncture #iihsucks