Work in Progress

Maandelijks archief van september, 2017



Small update.

Totally not intended, because I am supposed to be in agonising pain at the moment. I feel so disappointed with myself for not holding on. But this morning, after the 34th seizure within three hours, I just couldn’t do it anymore. I threw my socks into the ring.


I took my medicine, and within half an hour, my seizures were suppressed again. I could finally breathe, speak a whole sentence, and empty my bladder after two days.


My scull feels like parchment paper at the moment. Like it can’t protect my brains anymore. If I would push one finger softly against my head, my brains would leak out. My eyes can only stay in one position, if they move, a whole kitchen cabinet filled with steak knives will fall from one side to the other inside my eyeballs.


The suppressed seizures are doing its best to rage on through, because they feel I am weak. I am exhausted from going through one after the other. So they make my head hurt almost unbearable. But it is always better than having the never ending storm of excruciating seizures.


It was nice to have a break, even though it may not supposed to have happened. But I convince myself, what’s the point of a whole week, taking the same dosage… technically you can’t really speak of reducing medication, right?


Anyway, the doctor told me this was the way, so tomorrow I will continue, and I will hold on this time.


Only 5 days until I can start the new meds.


And off course they will show immediate efficiency even though the dosage may yet be on the low side, just like the ones I have now.





It’s the middle of the night, and I’m wide awake, feeling exhausted and nervous at the same time, and making myself a cup of warm milk. It almost seems like Christmas eve, when you are just as nervous and want to stay awake, to maybe get a glimpse of Santa who is coming to bring presents under the tree, and hopefully drink the milk and cookies you arranged for him. Only to fall asleep when he actually arrives.



We are on a roller-coaster of emotions these last few days.



Happy, angry, sad, are in one continuous motion, making each one having their peak every once in a while. We both are scared of what to come. We want to have that glow of a hopeful feeling, but it is only as big as a firefly.

I keep telling myself, it’s to not regret, having tried even something that has a very small chance of success. Because that would probably hunt me down. So that’s the main target for me, to eliminate the ‘what if’. Every other positive outcome is a bonus.

We made sure this weekend would be like a good meal before a work out. I loved every minute of it. Even with all the emotions passing through. We had the best lazy afternoon after a busy morning with puppy school and last preparations.



Snuggling on the couch together, with a nice cold Rose, about 6 pounds of various chicken snacks (that all went down off course), and watching the Harry Potter Collection.

Sunday morning I wanted to go to the Gym. Didn’t know if I could even do anything, but I just wanted to be there, since I shan’t be for quite a while again.

It was like I needed it. I gave everything I got.



I wanted to leave with the feeling I pushed through, that I am not as weak as I think I am at the moment. So it would boost me through the upcoming days. I can push through, I can do this.

And it went great! Maybe it was the combination of the Wonder Woman socks together with the Superman shirt… whatever it was…. I felt great. I was proud of what I could accomplish feeling the way I do.



After the Gym, Ramon took me to lunch. The mist finally had cleared, and the warmth of the sun, made the location of our lunch date even more idyllic.



It almost felt like Italy all over again.



Together with Kuzco and Malha, enjoying each other’s company, sitting in the sun, with a perfect balanced fish salad and a nice glass of wine.



Fear was getting the hold of me tonight. Making me breathe poorly, and unable to fall asleep. But somehow the warm milk, and the Gym has done its job. My body is feeling warm and heavy, and every muscle is very much present at the moment. Writing about our wonderful weekend, make the happy vibes it left behind, suppress the anxiety in me.


Yes, I can sleep now, and I will get through this first week.





I’m prepping my ass off. I want to make sure, everything is taken care of, appointments cancelled that needed to be cancelled, house clean, and everything washed and ironed, so Ramon has to do as little as possible. Only focus on himself, me, the doggies and the cats, and off course his work. I’ve been cooking all day long, so Ramon won’t have to live on snacks alone. The freezer hasn’t been this loaded in like forever. I will only eat my liquid medical food, solid food will be most likely a no-go.


Everything is passing my mind, things I still have to do, things I want to do, how I will get through a day, how the doggies will react, get the plastic tableware from the attic, put things I often use in safe range, make sure I can sit while I need to shower, and then I thought of my catheter.


A small fortune for my for my urethra in these coming days. I won’t be able to catheterize while having 280 seizures a day. So all the irritation and small wounds it holds, will finally get a chance to heal.


Goes to show, every downside has an upside….


It feels good to do this, all this prepping is good to get my mind off things.

And I even get to feel I did something to help Ramon through these upcoming horrible days.



And to make myself smile a bit, I decided that Malha really needed a baby hairpin to remove her lock of hair from her eyes. So besides all the necessary groceries, I bought the cutest little baby hairpin.

She doesn’t even seem to notice it’s in her hair. Yay for me!!!






Yesterday Ramon and I went to the LUMC, as we were invited to discuss the latest events regarding my kidneys.

We didn’t know what to expect of this consult, because we were told last May, no new trails would come any time soon, because CPH is too rare a condition.


We arrived early, so we went for a cup of coffee in the hospital’s restaurant. We were both so nervous. When I finished my cappuccino in one big gulp, I stared at the empty cup for a minute.

‘Well…. I foresee the consult will be swift and we leave disappointed.’ I said while swirling the remains in my empty cup.

Ramon looked at me with a dark frown. He said so little on our way to the hospital. His mind is taking him through every possible outcome…. Most of them being very grim.

‘What are you talking about?’ he asked almost annoyed with my bad theatrical acting skills.

‘Oooooh, don’t you see?? I’m being Sybill Trelawney from Harry Potter, when she’s giving a class on reading tea leaves from an empty tea cup.’

His annoyance grew bigger, but then turned into a smile. ‘You’re silly. Let’s go upstairs. It’s almost time.’


Just like Sybill, I made a false prediction. The consult lasted forever, with the doctor left us waiting to consult with the chief neurologist. When she came back, she told us that there was one medication I haven’t tried yet. I will have to stop the medication I’m taking now, and then start the new ones. They can be gradually be upgraded to the right amount that is needed. But…. There is a great change of failing, and no success rate is known, because my condition is rare. It just helped a few patients in a good way.


I left feeling like I had been punched in the stomach. I am utterly relieved there still is something left to try, but scared to my bones I would have to suffer great pain so short of time.


I will start next Monday. That gives me time to arrange things before I will have 280 seizures a day, and the greatest achievement will be; reaching the toilet when I need to go, and actually dump it where it ought to be dumped. No conversation possible, so feeling very much alone, even though Ramon will be working at home, to care for the doggies, and make sure I won’t suffer any danger. But the worst part of it all, is the amount of pain I will have to go through. I am so scared I won’t make it through a day, let alone two to four weeks of quitting the old and trying the new.

I will have a telephone conference in three weeks, but if the new meds aren’t working their magic, how am I going to speak to the doctor if I’m having seizures every five minutes?


I’m not happy. I’m not hopeful. I’m scared. I’m sad, and I’m angry.

If Ramon wasn’t there, I probably just waited till it would end, and keeping the meds who give me something of a life still to enjoy. But I want to stay with him as long as I can, so I will try everything, and even endure the greatest pain just to see if this one will work to give me more time with him and my fur-babies.

I don’t want to end with the words, ‘what if’. I want to feel I have done everything possible on things I believe in.



I could grow botanical gardens alone, on the happy tears I shed!

For the first time in my life, I have danced with Ramon!



As long as we know each other I always declined when he asked me to dance. I have two serious left feet. The only “dance” that has stuck over the years of my childhood, is something that ought to look like a Twist. Arms bend like a Barbie doll, moving back and forward like doing a power-walk. Knees bend and shaking my fanny on the rhythm of the music. That was how my father danced on parties. Even lifted a leg from time to time!  And everything my father did, I believed was cool, so I did too. But when puberty came, the eternal shame came along, and turned my legs into tree-trunks.

In my heart I wanted to dance so much, but I never dared to. Too afraid to look silly, and too afraid what people might say, so I rather denied myself.

But not anymore!!



I have scratched another item from my bucket list. I was so nervous. We were invited to an anniversary party of friends. I dressed up, wore my high heels, a shiny gold coloured shirt and glitter leggings. Completed the ensemble with a necklace I once got from Ramon, and I felt like a million bucks. I wanted to scratch this item from my bucket list with a side note saying, I did it with style.

Even though there weren’t many people on the dance floor, which made me even more nervous, I was surrounded with the best people ever. Colleagues of Ramon I’ve known ever since I’ve been with Ramon. They boosted me with the right amount of confidence I needed to turn my tree trunks into twigs.



I loved every minute of it. And I laughed so much, that I totally forgot all the other people in the room.



I did my very best not to cry, but being there on the dance floor in Ramon’s arms, slightly over dressed feeling like a disco ball amongst all the other casually dressed people, I felt  like Cinderella with my prince, I couldn’t hold them back. Cinderella quickly became Jack Black, but I didn’t care.

I finally had danced with my greatest love and best friend.




I was so looking forward to yesterday evening. I was going to babysit my two nieces. Ramon and my sister were going to the movies together. My nephew had a sleepover at grandma’s, so it would be just us three girls. All day through I took it slow. I only walked the doggies, and then rested, and slept a lot. There was no option anymore of taking more meds, like I usually do when I’m going to be with the kids. But I had a strange sense of trust it would all be okay. I was not going to do crazy stuff with them, just chill out. Play a game together, or I would let Angel be the little makeup artist she is, and donate my face as a blank canvas to paint. I was convinced Charlie would sleep anyway. There was a weird calm over me, which I have never experienced before, especially when I know I would be alone with a baby.



My sister explained everything what and how I had to do things with baby Charlie, and then they went off.

I had such a great time! Angel was the sweetest girl in the whole wide world. She really was the big sister, who helps mama out. She knew exactly what to do, and corrected me if I did it wrong. Charlie was a little grumpy of the cramps. So every time she cried, Angel kissed her, and told me to rock her, and pat her on the butt, because that was what Charlie liked. And it worked. We changed Charlie’s diaper together, and she sang Twinkle Twinkle Little Star to sooth her little sister when I made a bottle.

We drank tea together, or rather, I drank tea, and Angel drank sugar with a drop of tea. But… she had an orange on the side, so that balanced it a bit…. We played a board game together with Charlie, who cheated off course. Meanwhile Angel made pictures and video’s with my phone,



instructed me to look at her and not to the flashlight, wise little girl,

and made her own update in an app to my sister and Ramon. One containing 54 emoji’s, clearly she experienced a lot of emotions, and one with carefully chosen letters, because she can write you know…. She’s five!


Translated; I’m doing fine mommy.

But when she saw the picture Ramon send of a bag of M&M’s with cola, she was outraged! So we decided to make our own cinema together. She closed the curtains, shared her plaid with Charlie and me, and snuggled on the couch. We watched a movie with popcorn and chocolate cookies with Smarties on top, and because she was not tired at a-aaaaaaall, I tickled her back making shapes with my finger to guess what I had drawn. I was graced with kisses and hugs, and she told me Charlie was happy. ‘Good for you auntie Joycey!’



I wasn’t physically active in any way, but when Ramon and I were driving home, I felt so tired. But I felt so happy. It couldn’t have gone any better than this. It was everything I hoped it would be. It was a perfect evening spending one on one with Angel. I really had the most wonderful time.



I had a great talk yesterday with my physical therapist. We only talked, but it was necessary to tell her of my current situation, and how it will continue the next couple of months. How it will affect our work, and my progress.

I haven’t really talked about my state of denial. Or at least, that’s how it feels like. I am more worried by the fact I am causing Ramon so much grief, and can’t share emotions. We talked about it from time to time, and we even managed to perfect our level of sinister yokes. But I spoke the words, but really said nothing. Like it wasn’t about me, or us. But after my talk with my therapist, it was like something had opened up a bit.



Yesterday evening I was browsing on Facebook, and saw an update of Emma Bridgewater her new collection. There were a couple of mugs in particular, that caught my eye. ‘Cities of dreams’  is a new range of mugs with cities like Amsterdam, New York, and Paris are painted on the mugs. Where the Paris mug was described as ‘the anniversary in Paris’, ‘memories at the breakfast table’.

I looked up from my phone, then at Ramon, and the moment I wanted to speak the words, I choked up. A huge lump was in my throat, and tears rolled down my cheek while I looked at him. I swallowed two, three, four times, and then finally some words came out.

‘Maybe we can go to Paris next year for our anniversary, as we always did on the seventh of January. The past two years we didn’t go because of other more important things that came up, but seeing this could be our last…..’

Oooh, how I cried. And  oooh… how I so not wanted to do this. Ramon finally displayed moments of being okay, not tearing up every time he looked at me. I allowed myself 5 minutes of the ugly cry, and blubber all over his shirt while I hugged him, squeezing with all my might.

But it didn’t quite stop there. My brain began to start working again, and while my willpower is shushing it down, small parts come through anyway.



I feel rushed. Rushed in completing things I still want to do, or need to do, like finish painting the clogs I promised to a friend. Or being fucking Wonder Woman in a cosplay event. When I went outside to get my mobility scooter to do some groceries, I was nailed to the ground. I stared for a while and then I walked inside the garage to just sit for a while in our side car. We were supposed to have lots of time to restore it to its former glory, and then ride together  in style with our doggies. Are we ever going to ride together in the side car again? Will I still be okay next spring? Will it still be possible?

I took Ramon ‘s word to write an email to the LUMC. I know they can’t do much, but I just wanted to inform them of my current situation. So when I came home from groceries, I sat down to write an email. I think I backspaced it a thousand times. What are the correct words to inform a doctor?

Eventually I just wrote what was in my head. And asked for any help possible, even though I know there  probably won’t be any.

Two hours later I got a call back from one of the doctors. She was shocked to hear of my news. She just came back from holidays, and had 500 unread e-mails to go through, but when she saw mine, it was urgent enough to put on top, and call me back immediately. They’ve now arranged a meeting next week because this is an urgent case. I still make it less of a meaning for myself than it actually is,  but the way the doc from the LUMC spoke, made it ever so clear, this has reached its end.


Deep sigh….

Still not want to think about it…..

Just want to cuddle up with my babies…






Decided to go out of bed after staring to my nightstand for too long.

Just staring without thoughts or feelings. But clearly something is going through my head, otherwise I would be fast asleep at a time like this.


I got the results back from my bloodwork for my kidneys. I had a good feeling about it. I was nervous, but there was something we had to do earlier that day that caused way more stress, and that ended up alright. So I was convinced this would act as a good omen for my consult with the doctor. My breathing was still under control, didn’t have mayor sweat stains on my clothes, didn’t stutter out of stress…. everything was cool.


And weirdly enough I still stayed cool after the words she said right after our polite greet. The words you only say to a person who’s medical future doesn’t seem bright.


‘I’m sorry to say……’


The blood results came back negative. Worse still, if it keeps deteriorating at this rate, I will have a complete kidney failure within a year. And then I will need to dialyze. Nothing can be done about it, or can be given to stabilize it. The only option to stop destroying my kidneys any further than this, is to stop the intake of my medication for CPH. Which would mean, 280 seizures a day with excruciating pain 24/7, with kidneys working at less than 40%. Because what is already damaged can’t be cured.

This is something I have been warned about could/will happen in the future by the doctors from the LUMC, right from the start when I was diagnosed with this illness. I just always thought it would come to matter somewhere in the far future, far faaaaaaar away… not this near. Not within a years’ time….


Even writing down these words, still don’t make it real. I don’t know what’s wrong with me. Maybe it will hit me later. But for now, I still feel numb.

I called and texted my closest loved ones to tell them the news, and I stayed so clinical, distant even. When Ramon came home, he turned white after I repeated the words from the doctor, and without saying a word, one fat tear rolled down his cheek. After a few minutes of silence and a big hug, he said; ‘My worst fear in life is becoming a reality so much sooner than I always convinced myself.’

And even after his words…. It was still not kicking in for me, and so it seemed for Ramon.

Because when I hang up the phone after a friends call, when I came back to the living room, Ramon was crying his eyes out. Now it had hit him…. Hard.


That hit me. His hurt was huge. And that made me cry. And I couldn’t bring any soothing words. I just snuggled to his chest, and so we stayed for a while.

I went to bed, and woke up after Ramon came to bed. And since then, I have been staring at my nightstand.


Soon I will read up what will be in store for me, for us. What to expect. Three months from now I will do another blood test, to see how fast the deterioration is proceeding. I still have hope that it will slow down a bit. After that, I will ask my questions to the doctor.

For now I just want to enjoy life. Not think about what’s to come. Tomorrow, or today off course, seeing it is almost morning, is my neighbor’s birthday. I tippy toed down stairs to surprise her by hanging balloons at her door, for when she’s leaving for work. Celebrate life, love life. That’s what’s important. It felt good to inflate all those happy colorful balloons. Even if my neighbor doesn’t like the surprise, it was kind of therapeutic. It’s okay how I am not feeling the feels for now. When it comes, it comes, just don’t flag nor fail.







I’ve added something to my bucket-list.

I want to go to a Cosplay event, doesn’t matter which one, and go as Wonder Woman, wig and all.



We went to Comic Con in Amsterdam yesterday. We both loved it, but we were a little disappointed about the scale of it. We expected something bigger, something a little like we experienced in Italy with the Unicorn Festival.

But never the less, we saw the most amazing costumes, we wanted to buy like a hundred different T-shirts, and drooled over some very cool prop items. Instead of actually buying one hundred T-shirts, we bought one T-shirt for Ramon and one pair of socks for me. I just couldn’t resist. A pair of Wonder Woman socks with a tiny red cape attached to it. This simply screamed my name;

Joyce… you have to buy us so you add some superpower in the gym.’

Hmmmmm….well, I could use some extra superpower in the gym indeed. Does it show so badly I feel too tired and much pain to train, and my body wants to give in to the  marshmallow attitude?

Within a nanosecond, my thoughts turned into a need. I just needed to buy these socks!!! Nothing more to it!

So I did.



And the moment I touched them, I could feel tiny sparks of superpower entering my fingertips. Wowwwww…… It really works…… I can’t wait to wear them when I go to the gym again to train!

While we laughed about the silly costumes, smiled about the cute toddlers in costumes, and let out simultaneous gasps of admiration on some of the costumes, I was inspired to want to wear a costume myself. This would be a great opportunity to step out of my comfort zone, and actually walk like a superhero instead of dreaming about it.



I told Ramon of my new item on my bucket list, and almost immediately he replied with a huge smile. ‘Great! I will come with you!! I will need to find a big blue spandex onesie then.’ And started to Google on his phone.

‘Blue onesie????

Who would you want to be dressed like?’ I couldn’t think of anyone who wears a blue spandex onesie.

‘The Tick off course!!!’ he said with a big smile.



I couldn’t stop laughing for at least five minutes, then my belly started to hurt really bad. And even during the day, when the image of Ramon wearing a shining blue spandex onesie with two antennas on his head, popped into my head, I had to laugh out loud. Now I really can’t wait to make a costume for a Cosplay. But now I just will make two costumes… one Wonder Woman costume, and one shining blue onesie with antennas.




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Joyce Kleine – Work in Progress