swimmiey - Tumblr blog

[swimmiey]

Body, please, I’m literally begging you. I’m in tears. I’m exhausted. I just want some sleep. You graciously “let"me fall asleep about 045 Only for me to be woken up at 130. Please let’s go back to sleep. I’m hurting so much. This last few days has been hell. #SpoonieProblems

[swimmiey]

Berlijn

Remco had vrij tussen Kerst en Oud&Nieuw, dus hadden we besloten dat we er even een paar dagen tussenuit wilden. We hadden nog een hotelbon liggen, die we bij elkaar gespaard hadden via Optimel eurosparen, en hadden zo een leuke korting. Het maakte ons niet zoveel uit waarheen, als we maar even weg waren. Al snel viel ons oog op een hotel aan de rand van Berlijn, waar we binnen 30 minuten met de…

[swimmiey]

Warme zomerdagen: contrast met vorige zomer

Het was warm de afgelopen dagen. En ondanks dat ook ik het echt heel warm gehad heb deze dagen, mijn lichaam het heel erg zwaar heeft (gehad) door deze warmte en ik merk dat het een hele dunne lijn is tussen thuis kunnen blijven en een opname nodig hebben, is het niet iets waar je mij over zult horen omdat ik gewoon weg dankbaar ben dat ik deze warmte voelen mag.

Maar waarom zou je niet klagen…

[swimmiey]

Me: omg my life is so boring…

Chronic illness: well, let’s spice things up then.

*bad flare on it’s way*

Me: never mind, I’ll rather go back to boring.

[swimmiey]

Vertrouwen

Vertrouwen Ik moet mijn lichaam opnieuw leren kennen, maar hoe krijg ik ook het vertrouwen in mijn lichaam weer terug?

Het grootste gedeelte van de zomer opgenomen geweest met een zware infectie, waardoor ik zo ziek ben geweest dat ik een paar keer op het randje heb gelegen. Mijn mijn longen reageerde heel heftig op deze infectie, waardoor ik veel zuurstof nodig had. Door een hele lage bloeddruk met spoed naar de intensive care (IC) overgebracht. Uiteindelijk bijna 45 dagen koorts gehad, waarvan de meeste dagen…

[swimmiey]

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

[swimmiey]

I’ve had an amazing swim clinic tonight from Olympic swimmers @idekker and @saskia_de_jonge. And even though I’m pretty tired now, I’ve had a blast. It was so nice to be able to swim again. I was so happy I was able to do this even though I was pretty tired all day, I really needed some positive energy. Doing thing like this is really helping me to get through the bad days. Big thanks to Inge and Saskia for making my day. 🏊‍♀️ #swimmerforlife #swimclinic #iloveswimming #missswimmingsomuch #chronicillness #invisibleillness #njtube #chronichope #headachefromhell #ineedanap #itneverstops #intracranialhypertension #fanconisyndrome #electrolyteimbalance #kidneydisease #kidneyproblems #kidneyfailure #childhoodcancersurvivor #nursingstudent #butyoudontlooksick #myheadhurts #positiveenergy #totiredtofunction #spoonielife #spoonie #spooniestrong #spoonielife (bij Optisport Dronten zwembad Overboord)

[swimmiey]

Today was my birthday. I will celebrate it tomorrow, since we’ve had a swim meet today. Last year hasn’t been easy, but I’ve met some amazing people who I know will stand by my side when I need them. Next year won’t be easy either, but I’m going to try to make the most out of it. For now I’m just happy to be home and to be able to celebrate my birthday at home and not in the hospital where I was admitted 2 weeks ago with sepsis. It was a close call, but they discharged me Thursday so I’m able to be home for my birthday. I’ll do an update on the last admission soon, but I need some time to write it out and I’m to exhausted to do it right now. First celebrating my birthday tomorrow with my closest friends and family, and update will follow after. ------------------------------------------- #hello28 #hospitallife #sepsissurvivor #birthday #birthdaygirl #anotheryearolder #anotheryearwiser #anotheryeargoneby #chronicillness #invisibleillness #spoonielife #greatfulforlife #newfriendsforlife #swimmeet #swimmerforlife #chronischziek #headachefromhell #intracranialhypertension #fanconisyndrome #antibioticsfordays #sepsissurvivor #butyoudontlooksick #happybirthdaytome #bye27hello28 #invisiblystrong #ineedanap #totiredtofunction #chronichope #sickbutstrong #alliwantformybirthdayisacure

[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]

“Let me be crystal clear: if you’ve faced a tragedy and someone tells you in any way, shape or form that your tragedy was meant to be, that it happened for a reason, that it will make you a better person, or that taking responsibility for it will fix it, you have every right to remove them from your life. Grief is brutally painful. Grief does not only occur when someone dies. When relationships fall apart, you grieve. When opportunities are shattered, you grieve. When dreams die, you grieve. When illnesses wreck you, you grieve. So I’m going to repeat a few words I’ve uttered countless times; words so powerful and honest they tear at the hubris of every jackass who participates in the debasing of the grieving: Some things in life cannot be fixed. They can only be carried.”

— Everything Doesn’t Happen For A Reason — Tim Lawrence (via chronicillnessmemes)

[swimmiey]

Me: omg my life is so boring...

Chronic illness: well, let's spice things up then.

*bad flare on it's way*

Me: never mind, I'll rather go back to boring.

[swimmiey]

I think an important thing about spoon theory that abled people don’t get and that isn’t talked about enough outside the community is how unpredictable spoons are and how long-lasting the effects of shortages can be.

Like people get that I don’t have as much energy, but they’ll assume that I have some idea how much energy I have. I don’t. It’s completely unpredictable. It’s not like I get 20 spoons a day, or like I get 20 spoons per morning if I slept well that night. I can sleep fine and wake up feeling well, but then an hour later I have to go to bed again because I can’t move and I don’t know why. Then the next day I might be able to do more than usual and be fine, or maybe I overshot how much I was actually able to do and now I’ll be recovering for the rest of the week.

And running on low spoons for too long or pushing myself too hard can have a negative effect for a week, or a month, or years, and I also have no way to predict this. It’s kind of like how if you leave your car lights on once and run your car battery down it’ll probably be okay once it gets a jump, but then again you might have drained it too much and now it’ll be really weak and finicky until you replace it.

Except of course I can’t just go to the mechanic/doctor and get a new battery. If I push myself too hard one month it might take me three or four months to rest constantly and re-figure out why my pain and fatigue are bad in the first place, and three or four months of NEVER depleting or pushing past my spoon shortage again to get back to normal, or else I’ll have to take more time to recover.

The spoon theory is great, but when you’re living with low spoons chronically, there’s a lot more complexity and impossibility to managing life with spoons than most abled people who think they understand spoons seem to think there is.

[swimmiey]

Last week me and my husband went to Jochem Myjer and it was amazing😍 he is a Dutch comedian and I wanted to see him play life for quite some time now, but never managed to get tickets before (tried many times). This time we’re lucky an my husband managed to get us tickets. The show was amazing and what I needed with all my health problems lately. I’ve been laughing so hard by stomach starting to hurt and crying tears of laughter. The first song he started with just made me cry, because I could relate so much to it (it was a referral to the time when he was sick and in the hospital a few years ago) and freely translated (and only the parts I remembered lol 😂 It was something like; 🎵 I’m done with feeling tired, done with feeling sick. I’m done with white coats and doctors, I’m so ready for spring 🎵 and I am. I am so done with hospitals, doctors, feeling tired, feeling unwell, being exhausted and in constant pain. I’m just done with it all, I want to start living again instead of just surviving. Really happy I was able to go to his show and I was so excited I got a picture with him lol 😂 it was a night to remember a very long time, some positive energy that will last for a while. Thanks for the amazing night. ————————————————— #positvevibes #positiveenergy #comedian #jochemmyjer #spoonielife #spoonie #chronicillness #invisibleillness #lowphosphate #lowphosphorus #hypokalemia #electrolyteimbalance #kidneydisease #kidneyproblems #fanconisyndrome #njtube #springisintheair #intracranialhypertension #butyoudontlooksick #sickandtiredofbeingsickandtired #sickbutstrong #sinusthrombosis #totiredtofunction #ineedanap #myheadhurts #miracleshappen #ineedacure #tiredofhospitals #iwanttolivenotjustsurvive #tubefeeds (bij Luxor Theater)

[swimmiey]

Haven't done a proper update in a while. About a month ago I saw my neurosurgeon, he said there's nothing more he can do anymore. I just have to learn and live with it. Still so sad and angry about it, I really had my hopes up for this neurosurgeon. And A little over 2 weeks ago I've had an outpatient appointment with my nephrologist and was admitted after because my levels weren't what they needed to be. My kidney function had dropped, my phosphate and potassium levels were way to low so I needed telemetry to make sure I wouldn't get any arrhythmias. At first he wanted to try to bring my levels up with giving double dose through my NG tube, but after 4 days me levels only got lower so they decided to start an iv after all. It was in my ankle/foot because they couldn't get a vein anywhere else. A week later my doctor wanted to do an gastric emptying study and upper endoscopy to see if there was a reason for my constant nausea and vomiting, even though I still think it's from the intracranial hypertension, neurosurgeon stated it can't be so they want to dive deeper into it. Didn't have the GES yet, but during the endoscopy they changed my NG for an NJ tube, hoping that will help with the vomiting. Was discharged after another 10 days admission. Have to do blood work again in 2 days, hoping my levels haven't dropped any further, since they already were dropping before I was discharged, but it was still in the safe range so I was allowed to go home. #njtube #tubefeeds #electrolyteimbalance #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #myheadhurts #kidneydisease #kidneyproblems #spoonielife #spoonieproblems #hospitallife #endoscopy #endthestigma #gastricemptyingstudy #hypokalemia #hypophosphatemia #telemetry #ivpotassium #ivphosphate #totiredtofunction #sickandtiredofbeingsickandtired #butyoudontlooksick #chronicpain #chronicfatigue #chronichope #miracleshappen #believeinhope #nephrologyward (bij Isala)

[swimmiey]

Today is world kidney day, to globally raise awareness for chronic kidney disease. Chronic kidney disease (CKD) is a worldwide public health problem with adverse outcomes of kidney failure and premature death. CKD affects approximately 195 million women worldwide and it is currently the 8th leading cause of death in women, with close to 600,000 deaths each year. I’m one of those 195 million, I was treated for kidney cancer many years ago but because of it I developed Fanconi syndrome. Fanconi syndrome is a rare disorder of kidney tubule function that results in excess amounts of glucose, bicarbonate, phosphates (phosphorus salts), uric acid, potassium, and certain amino acids being excreted in the urine. For me the biggest problem is getting my phosphate and potassium levels at normal levels. I’ve had over 30 hospitalizations the last 3 years because my levels were dangerously low. WorldKidneyDay aims to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide. #worldkidneyday #worldkidneyday2018 #chronicillness #invisibleillness #fanconisyndrome #kidneydisease #kidneyproblems #electrolyteimbalance #hypokalemia #weneedacure #awareness #imawarethatimrare #lowphosphate #hypophosphatemia #acidosis #tubulardysfunctions #kidneyfailuresucks #spoonielife #totiredtofunction #watchyourkidneys

[swimmiey]

Today is the last day of February, which means it's rare disease day. A disease is called rare when less than 5 in 10.000 people are diagnosed with it, and it has to be life treating or chronic. In my case it means I have multiple rare diseases. The first one was a rhabdoïd tumor in my right kidney, about 1 in 12.000.000. After that I've got a sinus thrombosis and a vestibular schwannoma, both about 1 in 100.000. Becasue of this is developed idiopathic intracranial hypertension, also 1 in 100.000. A DVT in my arm, not very common (don't know the exact number). Also I have renal tubular acidosis and fanconi syndrome, causing severe electrolyte imbalance. Although isolated proximal (type 2) or distal (type 1) tubular pathologies are well characterized, a combined pathology leading to type 3 RTA is extremely rare. There needs to be more awareness for rare diseases and the complications they can cause. ------------------------------- #imawarethatimrare #raredisease #rarediseaseday2018 #icareaboutrare #intracranialhypertension #sinusthrombosis #vestibularschwannoma #rhabdoid #rhabdoidtumor #armthrombosis #pseudotumorcerebri #fanconisyndrome #butyoudontlooksick #rarediseaseawareness #rta #renaltubularacidosis #renaltubulardysfunction #electrolyteimbalance #hypokalemia #hypophosphatasia #lowpotassium #lowpotassiumlevels #lowphosphorus #lowphosphate #chronicillness #invisibleillness #spoonieproblems #weneedacure #totiredtofunction #chronichope

[swimmiey]

Today is International Childhood Cancer Day. As many of you know I was diagnosed with a rare kidney cancer (rhabdoïd tumor) at the age of 5, 23 years ago. I was lucky we caught it in time, but I also suffer daily from damage the chemo has done to my remaining kidney. It's a daily struggle, but I'm so grateful I live in a country with good health care where I was able to get treatment. It has given me a second change and from a very young age it was clear to me I wanted to work as a pediatric oncology nurse, to help those who are diagnosed now and in the future. Today highlights the need for concerted global actions to address the growing challenge posed by this non-communicable disease. Globally, childhood and adolescent cancer is threatening to overtake infectious diseases, as one of the highest causes of disease-related mortality in children. The reported worldwide incidence of childhood cancer is increasing, from 165,000 new cases annually to 215,000 cases for children 14 years and younger and 85,000 new cases for 15-19 year-olds. Many more remain uncounted and unreported due to a lack of childhood cancer registries in a large number of countries. "The chance for a cure, the chance to live, should not be an accident of geography. There is nothing scarier than realizing that your child has cancer. However, there is nothing more tragic than knowing that treatment and cure does exist for your particular child’s cancer and with excellent outcomes, BUT… that it is not available for your child. Why? Because your child happens to live in the wrong hemisphere! It is time to take action to stop this cruel atrocity… make your voices heard on International Childhood Cancer Day.
On International Childhood Cancer Day, we ask that stakeholders in healthcare, parents, families, and communities advocate for government collaboration with national civil society organizations, non-profit groups and local communities to ensure that children and adolescents with cancer have appropriate care and support throughout the childhood cancer journey (from diagnosis, treatment and follow-up care). #childhoodcancersurvivor #childhoodcancer #gogold #kidneycancer #isurvivedbutipaidforit