My new medical ID bracelet from @laurenshopeid came in the mail today. I'm so exited about it and couldn't be any happier with it. Rather wouldn't need one, but since I do I just want a pretty one. Today I've had an appointment with the physician assistant and it didn't go exactly as hoped. The intracranial pressure (icp) readings were way to high when laying down, but standing up the numbers went straight into the negative. This means my shunt still drains to much standing up, making my shunt go vacuum so it stops draining and giving me high pressures. But for now the neurosurgeon doesn't want to change anything in the settings of the valve, because of the pulmonary embolisms and wanted to let my body try and heal from that before changing the settings, because he's afraid he would make things worse when he's changing it now. So I'm facing another 3 months of these excruciating headaches, nausea, vomiting, strength loss and vision loss.. I'm just so ready for some relief.. and I'm just feeling devastated that it seems like changing the shunts valve hasn't done anything so far. Tomorrow I have a phone consult with my nephrologist, my potassium and phosphate levels are dropping the again.. Really hope I don't need any iv potassium anytime soon ▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️ #neverendingstoryofmylife #itneverstops #iihsucks #totiredtofunction #sonauseous #myheadhurts #feelingdefeated #invisibleillness #chronicillness #chronicpain #chronicfatigue #chronichope #chronicheadache #butyoudontlooksick #intracranialhypertension #pseudotumorcerebri #headachefromhell #justspooniethings #justwanttosleep #justwantrelief #shuntlife #shuntproblems #shuntrevision #spoonielife #medicalalertbracelet #ineedacure #ifeellikegivingup #electrolyteimbalance #brainsurgerysurvivor (bij Radboudumc)