#chronichope

I'm admitted in the hospital again. I was rushed in Saturday night, because of trouble breathing, tachycardia and tachypnoe. Sunday I've had a CT scan, and it came back with the news that I have multiple bilateral pulmonary embolisms. Doctors don't know how this could happen, because I'm on blood thinners and my INR was in range. Also my potassium levels were dangerously low.. so now I'm on even more blood thinners, iv potassium and oxygen. Also I'm being monitored 24/7 because my heart rate was so high and my potassium low. I'm feeling devastated knowing I can get blood clots and PE even when using blood thinners.. it makes my anxious. --------------------------------------------------- #pulmonaryembolism #justspooniethings #hospitallife #chronicillness #invisibleillness #intracranialhypertension #chronichope #totiredtofunction #totiredtosleep #thrombosis #thrombosisawareness #keeplifeflowing #spoonielife #butyoudontlooksick #spoonie #sinusthrombosis #sickandtiredofbeingsickandtired #sickbutstrong #headachefromhell #shortofbreath (bij Isala Ziekenhuis Zwolle)

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#Repost @mindfulmigraine ・・・ Happy healing and happy Friday 🙏💜 via @autointune #mindfulmigraine #onedayatatime #letgo #beinthenow #presentoverperfect #happyhealing #happyfriday #migrainewarrior #migrainewellness #migrainematters #mindfulness #createcalm #mindbodyconnection #breathe #innerpeace #chronicillness #chronichope #chronicmigraine #chronicpainwarrior #notjustaheadache #morethanaheadache #migrainewarrior #migrainesupport #migrainerelief #migraine #chronicmigraineawareness #migraineawareness #anxiety #mentalhealth

#Buffy is always my #headache buddy. ❤🐶 #chronicpain #chronichope #chronicpainwarrior

My nephrologist is truly amazing. So glad he's my doctor. Last Thursday I've had an appointment with my nephrologist. When I first walked in he said: I think you don't really feel that we'll, maybe we should draw some blood before we continue. So he called someone who could access my port to draw some blood. After that was done we talked for almost an hour about many different things, but the main thing we discussed is to do weekly potassium and phosphate infusions at the daycentre/infusion center to prevent symptomatic hypokalemic and low phosphate episodes. We start doing them weekly and if needed we'll do them more. If we know how my body reacts to the potassium and phosphate and know exactly how much I need of it, we will go ahead and do home infusions. He said some of his colleagues are a bit scared of doing so, because normally potassium can only be givin in the hospital, but he said he's doing good anything to prevent those admissions and make life a bit easier for me. I really love this nephrologist and how he's actually seeing me instead of work. He takes his time to actually talk to me and listen to me. He was also a bit frustrated with my neurosurgeon, so he decided to call him, even though he's in a different hospital. Tuesday he's calling me back and then we'll talk about when I'm going to get my first infusions planned. ----------------------------------------------- #chronichope #chronicillness #invisibleillness #kidneydisease #kidneyproblems #fanconisyndrome #hypokalemia #hypophosphatemia #symptomatichypokalemia #portacath #potassiuminfusion #ivpotassium #ivphosphate #weneedacure #weeklyinfusion #hospitallife #homeinfusion #spoonielife #spoonieproblems #spoonie #lowphosphate #lowpotassium #ineedanap #amazingdoctor #nephrology #nephrologist #totiredtofunction #sickandtiredofbeingsickandtired #butyoudontlooksick (bij Isala Ziekenhuis Zwolle)

#Repost @mindfulmigraine ・・・ One of my favorite quotes ✨ It's so amazing that WE have the power every day to think whatever thoughts we want. Read this last night and today I am putting on my positive pants as much as I can in between the moments of pain during this cray flare my body is throwing at me. I feel so much better when I consciously gravitate my thoughts toward this place of gratitude and acceptance. It isn't an either-or mentality and it's perfectly normal to bounce back and forth, especially when things are tough! To all my quiet courageous insta-pals, may you draw from that inner space of courage and let it carry you 🦁✨ sending you soooo much love 🤗 and a sincere thank you to everyone's kindness and support over the past couple of days, it has truly warmed my heart immeasurably. There is so much love in this community and I am so grateful ♥️ #mindfulmigraine #courage #migrainewellness #migrainematters #chronicillness #chronichope #chronicmigraine #chronicpainwarrior #notjustaheadache #morethanaheadache #migrainewarrior #migrainesupport #migrainerelief #migraine #chronicmigraineawareness #migraineawareness #invisibleillness

So yesterday I've had an appointment with the neurosurgeons physician assistent. I went there to get a shunt tap done and to try and lower the pressure in my head. Unfortunately she didn't get any liquor out, my shunt seems to pull vacuum. She could get some out, but as soon as she released the pressure on the syringe it got pulled back into my shunt. So not what I've hoped for. She adjusted my valve to a lower setting, hoping that will help with the vomiting and never ending headaches. Also she talked to my neurosurgeon and he wanted to do an MRI of my head again, since the last one was a while back. I'm on the emergency list because they don't want to wait with the mri for 6 weeks or more. If this doesn't help I'll probably face another brain surgery to check the shunt, place a new sensor reservoir since the one I have broke after only 8 weeks and maybe put back my lp shunt.. I'll keep you posted. -------------------------------------------- #shuntlife #shuntproblems #shunttap #vpshunt #lpshunt #neurosurgeon #ineedanap #chronicillness #chronicpain #invisibleillness #intracranialhypertension #pseudotumorcerebri #sinusthrombosis #sickandtiredofbeingsickandtired #totiredtofunction #spoonielife #spoonieproblems #spoonie #butyoudontlooksick #bravedutchies #brainsurgerysurvivor #brainsurgery #iihsucks #myheadhurts #headachefromhell #chronichope #iwanttolivenotjustsurvive #awarenessmonth (bij Radboudumc)

#Repost @mindfulmigraine ・・・ It's not about what happens, it's how we react to it. Keep your heart open and keep moving to where the light is 💞✨ #mindfulmigraine #keepmewherethelightis #painday #highpainday #findthelight #keepgoing #powerofmindfulness #migrainewellness #migrainematters #mindfulness #createcalm #mindbodyconnection #breathe #innerpeace #chronicillness #chronichope #chronicmigraine #chronicpainwarrior #notjustaheadache #morethanaheadache #migrainewarrior #migrainesupport #migrainerelief #migraine #chronicmigraineawareness #migraineawareness #invisibleillness