#totiredtofunction

[swimmiey]

A little over a week ago my NJ started to leak bile and stomach acid. Also everytime I ate or drank something it leaked out and I started to threw up formula, so I knew it had migrated from my jejunum to my stomach and needed to be replaced. It happened on Saturday night so we decided to hold my feeds for a day and called my nephrologist on Monday. They had an opening on Tuesday, so I wasn’t to long without my feeds. It needed to be replaced on the endoscopy ward with a gastroscopy. I was given versed, but was still wide awake and noticed everything that happened during the endoscopy. They tried placing it through my nose instead of my mouth like last time, but the scoop was to big so it did hurt like hell.. but I’m glad they were able to place it through my nose. Hopefully this tube stays in place for a while, because I’m really disliking the placements. My blood pressure was really low during the procedure and after (70/35) the alarm went off constantly, so they almost made me stay the night.. But luckily it came up just enough to be allowed to go home. -------------------------------------- #njtube #ifeellikegivingup #feedingtube #feedingtubeproblems #sickandtiredofbeingsickandtired #spoonie #spoonieproblems #totiredtofunction #chronichope #chronicheadache #chronicillness #chronicpain #chronicfatigue #electrolyteimbalance #invisibleillness #intracranialhypertension #sondevoeding #fanconisyndrome #butyoudontlooksick #headachefromhell #versed #hospitallife #hypotension #endoscopy #gastroscopy #endoscopie #gastroscopie #ineedacure #chronischziek #kidneydisease (bij Isala)

[swimmiey]

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)

[swimmiey]

When you think you look cute with a snap chat filter 😂😂 starting to get a bit nervous for my surgery Monday. In 32 hours I will be admitted to the hospital (have to be there at 7.30 am). Even though I'm starting to get nervous, I'm not nervous for the surgery at all. I'm most nervous for getting the iv, because last time it took them over 4 hours, 20+ pokes and 4 anesthesiologists before they finally were able to start an iv. I know it's stupid to be more nervous for starting the iv rather than the surgery itself. But this will be my 16th surgery so I know what I can expect. If everything goes well and my electrolytes behave I'll be home Monday evening. I just hope that this time they won't refuse giving iv potassium during the surgery. Last 3 times they refused, said it wasn't necessary, but my levels dropped like crazy after surgery.. Last time they did give some iv potassium and my levels stayed within range. So I'm hoping I have a nice anesthesiologist Monday that's willing to listen to me, because I know my body and what's best. I know I will have Hypokalemia after surgery and feel like 💩 when they won't give it. I'll update Monday after surgery. Hope you all have a nice weekend. ************************************************* #hypokalemia #spoonieproblems #surgery #portacath #portacathsurgery #nervousaf #chronicillness #invisibleillness #intracranialhypertension #electrolyteimbalance #lowphosphate #lowpotassium #spooniestrong #totiredtofunction #headachefromhell #ineedaspinaltap #irregularheartbeat #generalanesthesia #shuntlife #shuntproblems #childhoodcancersurvivor #anesthesiologist #hospitallife #operatie #ziekenhuis #ziekenhuisleven #operatingroom #gripperneedle

[swimmiey]

I’m so incredibly sad at the moment and feeling devastated. The surgeon decided my port needed to be removed because of the incision not healing and getting infected. I expected I would get a new one, but my nephrologist decided against placing a new one. This means I won’t be able to get my weekly infusions anymore, even though I was doing so well with them. He wants me to have an NG for the rest of my life and get potassium and phosphate 24/7 through it, but I really don’t want to have an NG for the rest of my life. It’s just no quality of life for me and it doesn’t guarantee my levels will be stable (that’s just based on doing it that way for a week and my levels are always stable for at least a week after infusion) Also my neurosurgeon says there’s nothing more he can do for me and he said I have to learn to live with the daily vomiting, excruciating headaches, vision loss and pulsatile tinnitus. I really feel like giving up at the moment. It’s not like I want to die, but I can hardly call this living. Being admitted 40 times in only 3 years, spending 382 days in a hospital (1/3 of the last 3 years) knowing this won’t get any better without the weekly infusions. It’s back to being admitted every 2-6 weeks, about a week each time and I just can’t do it anymore. All hope I’ve had for a little bit more stability in my life and less admissions is gone now he doesn’t want to do the weekly infusions anymore. The little light I saw at the end of the tunnel has vanished again. ----------------------------------- #chronicillness #invisibleillness #intracranialhypertension #kidneydisease #fanconisyndrome #ifeellikegivingup #icantdothisanymore #totiredtofunction #headachefromhell #shuntlife #shuntfailure #portinfection #ihatemyliferightnow #hospitallife #ineedacure #butyoudontlooksick #sickandtiredofbeingsickandtired #spoonie #spoonieproblems #myheadhurts #ineedhope #ineedamiracle #wakemeupfromthisnightmare #cryingnow #canijustsleepandneverwakeup #notalwaysahappyending #noqualityoflife #iwanttolivenotjustsurvive

[liz-troublemaker]

good morning babes 😘 hope y’all have a nice day #tired #toearlyforthis #totiredtofunction #awesome #morning #morningsun #sunrise #cold #coldweather #autumn🍁 (hier: Essen - Steele)

[liz-troublemaker]

good morning babes 😘 hope y’all have a nice day today 🤗 #tired #ineedmorecoffee #totiredtofunction #toearlyforthis #awesome #coldweather (hier: Bahnhof Essen-Kray Nord)

[liz-troublemaker]

good morning 😘 time for work #work #tired #ineedmorecoffee #totiredtofunction #toearlyforthis #goodmorning (hier: Essen, Nordrhein-Westfalen)

[liz-troublemaker]

Good morning babes ♥️ #ineedmorecoffee #toearlyforthis #totiredtofunction #totiredforthis #love #sunrise #lifted on repeat (hier: Essen)