#iihsucks

Almost done with the last preparations.. will be taken to the operation room in about 30 min. #shuntlife #shuntproblems #shuntrevision #spoonielife #brainsurgerysurvivor #brainsurgery #chronicillness #invisibleillness #intracranialhypertension #ineedacure #incurabledisease #iihsucks #pseudotumorcerebri #portacath #electrolyteimbalance #headachefromhell #myheadhurts (bij Radboudumc)

I'm faking being well, not being sick. Shout out to all our friends who are skilled at faking wellness for other peoples comfort. And here is to the day where you. Ever have to fake again, either because you are cured (yes please!) or beceause the people you have to take for become more understanding and faking is no longer necessary. #chronicillness #chronicallyill #iihbrainstrust #iih #iihanz #iihsucks #ihaveih #spooniewarrior #spoonie #support #ptc #bih #brainsqueeze #mentalhealth #mentalillness

Intracranial Hypertension (IH) is a rare neurological disorder that results in increased cerebrospinal fluid pressure within the skull. Doctors used to call it “Pseudotumor Cerebri” (aka fake tumor), because those with brain tumors also have elevated intracranial pressure—causing the same symptoms and presentation. Life with IH varies greatly from patient to patient, but is a serious condition that can greatly impact quality of life. Having severe headaches, nausea, vertigo, loud ringing in your ears, and even vision loss every single day sounds like a nightmare. But it’s reality for those with Intracranial Hypertension. Not every patient experiences all of these symptoms, but they are all very typical with IH. Some have “good days” and others do not. Many patients are unable to work or go to school because of their health. To put it bluntly—this condition is difficult to live with. Just because you see us smiling, laughing, or out doing something doesn’t always mean we’re feeling better—it means we’re trying to enjoy our lives despite our illness. Treatment options are unfortunately not great. Medication to treat IH is very harsh on the body (particularly your kidneys) and has many undesirable side effects. Those that don’t respond to medication often resort to brain shunt or stent surgeries. There is no cure or “quick fix” for IH and it’s accompanying symptoms. #iihsucks #iihawareness #invisibleillness #intracranialhypertension #headachefromhell #myheadhurts #chronicpain #chronicfatigue #chronicillness #chronichope #iih #pseudotumorcerebri #pressureheadache #vpshunt #lpshunt #butyoudontlooksick #weneedacure #blurredvision #paralysed #tinnitus #iihawarenessmonth #spoonie #spoonielife #lumbarpuncture #ineedaspinaltap #totiredtofunction https://www.instagram.com/p/BntSHddCFk0/?utm_source=ig_tumblr_share&igshid=1ud9ojtv8mt82

So I’m in the hospital again.. last week when I went to the infusion center they didn’t like how my port incision was healing. It was red, warm and puss came out of it and it still wasn’t healed after 3 weeks. So I was admitted for iv antibiotics. It took them over 3 hours to place a normal iv since they couldn’t use my port. Finally they were able to place a leaderflex/midline that should last for at least a week of iv antibiotics.. well my body once again decided not to cooperate and the line blow my vein after 3 days so they decided to switch to oral. In the mean time they asked the surgeon for a consult, because the incision only got bigger and deeper.. And he decided that my port has to be removed. I'm so sad about losing this port and needing yet another surgery. Surgery is scheduled for tomorrow morning :( also they decided to start an NG tube because I've lost way to much weight since my last admission in December. I hate needing this NG tube, it's so uncomfortable. When will there be light at the end of this tunnel, when will I wake up from this never ending nightmare. I was feeling so well with the weekly infusions.. But yet another complication was waiting around the corner. Thankfully my own nephrologist is back tomorrow, since they want him to make a plan for how to move on from here.. But first surgery number 20 tomorrow. Today is 10 days in the hospital, out of the 14 days since the start of 2018. Which means I've been more in the hospital than I was at home this new year. I just want to go home. ----------------------------------- #chronicillness #invisibleillness #fanconisyndrome #infection #portacath #portinfection #surgery #spoonielife #spoonieproblems #wakemeupfromthisnightmare #totiredtofunction #myheadhurts #ivantibiotics #ngtube #butyoudontlooksick #sickandtiredofbeingsickandtired #leaderflex #tubefeeds #intracranialhypertension #shuntfailure #antibioticsfordays #pleasemakeitstop #icantdothisanymore #hospitallife #ziekenhuisleven #chronischziek #sondevoeding #onzichtbaarziek #operatie #iihsucks (bij Isala Klinieken Zwolle)

It's good to know that when my headaches hit and hit hard I can count on my family to take care of me. Today it's a doozy and it sucks. Thanks babe for letting me just relax and take meds all day. The goal is to one day be headache free. #iloveyouguys #pseudotumorcerebrisucks #iihsucks #wantitgonenow #ugh

This is what a shunt in the brain looks like. And this is what I want to avoid at all costs. I think I'll print this out and put on my fridge and room wall to motivate me to keep my diet on track and to deter me from snacking. As long as I keep my weight down it will help keep my intracranial pressure down. And I won't have to have shunt surgery. Praying and hoping and crossing my fingers. #DodgeThatBullet #FingersCrossed #IIHsucks

So I've had an amazing art workshop yesterday with my best friend. This is the result of it, reminding me some day I'm gonna be okay. On the drive home I saw an amazing sunset 🌅 I had to stop and take a few pictures. The workshop was fun, smashing with paint and getting al my frustrations out. I'm not doing so well. What I thought was just the aftermath of shuntsurgery and pulmonary embolisms, might turn out to be the last thing I want right now. On Tuesday I've made an appointment with my gp, because I was not feeling well and extremely exhausted. He wanted to make sure everything was okay so made me do bloodwork on Wednesday. He said to call today (Thursday) for the results of it. But yesterday at 12am, just 3 hours after the blood work, my gp called because he got a call from the hospital that my blood showed extremely high inflammatory levels. Other than that, I don't show any signs of infection so it's guessing where the source of the infection is. And now I'm so scared and worried, because last year the exact same thing happened. High inflammatory levels, but no obvious source. This kept going on for about 8 weeks, and at that point it turned out to be my vp shunt that's infected. Last year it was a very slow growing bacteria, so it didn't show up in cultures done from the liquor they get with the LP, it didn't grow in my blood.. just did grow in the liquor they took directly from my vp shunt. So right now it feels like I'm having flashbacks, it feels like this all happened before. To be honest, I'm scared. I've never been this scared before. Because my shunt being infected again also explains my symptoms and why they aren't getting better after last surgery. Last time they didn't get better either. Tuesday I have an appointment with the neurosurgery physician assistent (PA) and all I can hope for is that she will take this seriously and look further into it. Also hope she will discuss my concerns with the neurosurgeon. ▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️▫️▪️ #iihsucks #lpshunt #vpshunt #shuntlife #shuntproblems #shuntrevision #shuntinfection #invisibleillness #chronicillness #chronicpain #chronicfatigue #chronichope #intracranialpressure #myheadhurts

I'm home from the hospital. Surgery went well, but I'm still in a lot of pain and I'm very light headed. I'm only comfortable laying down, when I get up everything starts to spin and I black out. Really didn't expect waking up with a incision as large as this one. It's about 7.5 inches/19cm and I have 19 stitches. Very glad he used dissolvable stitches, so no need to remove them. My blood pressure has been extremely low since surgery (the one pictured is the highest it has been) ranging from 55/28 - 87/38. Have to be very careful when I'm getting out of bed, because I can't use a fainting episode when I'm on the stairs walking down. I really hope this will help me get my intracranial pressure under control. The sensor reservoir is working, they did the first intracranial pressure readings right after surgery and the day after. Pressure is low now, as expected right after surgery because a lot of csf has leaked away during surgery. Have the next sets of readings in 6 weeks to see if the settings of the shunt needs to change. --------------------------------------------------- #shuntlife #shuntproblems #shuntrevision #miethke #brainsurgery #headachefromhell #chronichope #iih #iihsucks #iihawareness #pseudotumorcerebri #brainsurgerysurvivor #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #butyoudontlooksick #lowbloodpressure #hypotensive #hypotension #vpshunt #lpshunt #ventriculoperitonealshunt #ptcwontstopme #neurosurgery #portacath #battlewounds #spoonielife #scarsforlife #hospitallife (bij Radboudumc)