Work in Progress

Maandelijks archief van mei, 2016




Usually when you really looking forward at something, it turns out to be a bummer. But last weekend was just as great, as I hoped it would be.

We went to Antwerp in Belgium to shop for jeans for me. And to make the most of our day, Ramon’s brother and sister in law, who live in Belgium,  joined our shopping adventure.

‘Why are you shopping in Antwerp for just a pair of jeans?’ Ramon’s brother asked, when Ramon called to set a date. ‘My little misses wants an Italian designer jeans. The closest stores are in Maastricht, Antwerp, or Milan. So we chose Antwerp so we could meet up and have a lunch together.’ Ramon replied like it was an everyday matter. I sat next to him when he said that, and I felt so ashamed. O my God, it didn’t only sounded posh, it wás posh!

I could cry and laugh about it at the same time. I really, really wanted this jeans badly. It was high on my wish list for over a year now, after seeing some great looking athletes wearing these jeans.  I could cry because I really don’t ever want to be a greedy, needy, poshy lady, where only the best of the best is good enough. But I had to laugh about it, because the last time I bought clothes, hell, even underwear, was two years back. And I didn’t even bought it, Ramon had to convince me, and bought it for me.

So we went to Antwerp, and I wouldn’t want to trade that day for anything in the whole wide world. I loved it all! The weather was good, the company was the best, the lunch….

Oh my God….. divine fresh tuna everrrrrrr…..


freddy pantroom


And we purchased my, already ultimate favourite jeans ever, in less than 10 minutes. My butt looks amazing!!!



A-Ma- Zzzzzzing!

Even bought a Wonder Woman T-shirt that makes my boulder shoulders look wondrously huge. So when the sun comes out, the guns comes out, my delts are looking good, and my butt….

Well….they have never looked so good….everrrrrr…..

I had to take a little more meds that I usually take, just to make it through the day, but it was worth it. We even bought a rain suit for Ramon to put over his motorcycling gear, and a doll for my niece her fourth birthday.


joyce kleine


I needed two days to recover, but I look back at it with the greatest joy in my heart…..and in my closet off course.

I think I will spray-paint my clothes hanger golden, and hang my jeans on it,  so it will stand out in my closet.


Brilliant- uhhh- golden idea!


My little bundle of joy had his yearly tantrum today.




Once a year I am the most stupid fur-mommy in the whole wide world.

And today is the day.

The grass spikes are growing strong again this season, and as long as they are still green and soft, they don’t usually do much harm. But yesterday it was national lawnmower day it seemed, so all the young, green, still soft to the touch grass spikes, are all scattered lifeless between the freshly mown grass, and already rigor mortis has definitely taken over, turning them stiff, yellow and as sharp as a bouquet of needles.




So time has come to wear the ear-sock again, so the grass spikes don’t crawl up his ears, and potentially damage his auditory canal.





Not without displaying his utter contempt towards this fashion disaster.




No-ooooooww-ooowwww. I do-oooooowwwwn’t wannaaaaa!’

This is sort of what Kuzco’s howling sound was, when he saw me approaching with the sock.

Cocker Spaniels are very communitive. They use their vocal cord very frequently.

So off course the howling talk continued.




No-ooooowoooooww, I wooooook stuuuuuuupid. They aaaaaaall make fun-o-meeeeee!!!’

To end the tantrum with a firm and deeply offended Woof!




But, off course, my word is law, so sock stays on. And to make matters worse for our dear little bundle of little joy today, we laughed out loud seeing this seasonal funny face again.

Our little Princess Leia.


princess Leia


Princess Leia






In my head I heard a male voice with a Hindu accent when I entered my daily route through the park. Everything was so incredibly green. Everywhere I looked, it was like someone had burst his whole paint ball canon dry. The Zen-feeling immediately took over, thus the Hindu voice.

‘Namasté. My soul, greets your soul. Take a deep breath and let the calm and serenity of nature, embrace you like a mother’s womb.’

Well, okay, who could argue with a figment of my imagination… so before I pursued my mindless walk, I took a deep breath.

Yes…I could feel it… very Zen indeed…

If only I could have taken satisfaction with that one breath alone…. but no… I had to take another one. I had to Bogart the inhalation. Because why settle with one, if you could take two, three or more injections of utter fusion with nature. But the second time I took a deep breath, I was roughly torn apart of my becoming one with nature, and my godly-like conversation with my imaginary Hindu priest. A chemical flowery sent filled my nostrils when a lady crossed my path. It was definitely a case of twenty or so puffs to many.

I snapped out of my fantasy, and smiled when I saw my wrist sliding out of my short sleeve when I was about to throw Kuzco’s ball.

Yeah… that’s right…. I was hoping to initiate my new bracelet. That’s why I wore a tight jacket, with three-quarter sleeves.

Saturday was World Whiskey Day. After Ramon came home from school, we celebrated this joyful day.




Because….duh….. it’s even better than Christmas, Hanukkah, New year’s and Rosh Hashanah combined.

I arranged all sorts of snacks that would do great with a glass of whiskey, and we feasted. I love these moments where we just live the moment, and have fun and laugh about silly stuff. We talked about many things, but main topic of the evening was Italy off course. What to do, where to go, what to see, and most importantly, what do we still need to purchase before we go.

A medical bracelet for me, was something we immediately started to search for on the internet.  Accompanied with our whiskey and gravad lax, we ordered a bracelet. ‘It’s been a while since I bought you jewellery. Be sure to pick something beautiful.’ Ramon said with a wink. I chose something simple, and a little robust. A black leather band, with a silver centre piece. Something that would surely catch the eye when I’m having a seizure.




It arrived yesterday. And I’m so happy! It is just perfect. So today, while walking through the park, I for once was hoping to have a seizure. Even though 99 out of the 100 times, people just keep walking by, acting like they haven’t seen anything, I was hoping for the 1 person to notice and would take a look at my bracelet. But I didn’t get any seizures while walking, so for now, it just looks nice on my wrist. But it is a very reassuring feeling, people can react accordingly if they notice my medi-bling. Because not everybody understands Kuzco’s language, and when I am without Kuzco or someone I know, I know everything is going to be all right as well.


It stopped raining outside this morning, as it did in my head. I felt happy. I made some choices today, and I felt good about it.

I decided that I will go to my physician tomorrow, tell him about the LUMC, and what’s going on at the moment. And tell him I want to see a psychologist. It never hurts to brush up my mind and knowledge. And if I start now, instead of waiting until I really need it, I perhaps only need a couple of visits. And I can even make myself stronger again so I could be a better support for Ramon.

I walked with Kuzco, and the morning air was so nice. Everything was still wet from rain, but you could feel that the clouds would pass, and the sun would come to dry all the plants and trees, and make their fragrances smell even stronger. One of my favourite flower is come to blossom, the wild poppy. And everywhere I look,






a bunch together, are filling the green grass with bright red dots.




When you look through the hairs of your eyes, it almost looks like an Action Painting, where red was the final splatter of paint, to make the perfect detail to stand out.

I went to the market, to buy the ingredients for a chicken soup. My own little garden is growing so strong, and I can even use some herbs and vegetables from it, which made me even more happy. I opened all the windows to let some fresh air in the house. Even that was full of symbolism. With every window I opened, I took a deep breath. My head still feels a little heavy from sadness.





But letting the fresh air come in, and feel the rays of sun piercing through the clouds, drinking my chamomile tea, and gardening my herbs and vegetables, to finally cut them and make my chicken soup, made little wholes in my heavy head.




The house smells so nice.


chicken soup


It is a good day.




Throughout the weekend, I was thinking what I was about to write, and I just couldn’t think of something happy. I know I’m writing this whole journal for myself, but I want the positive to control the negative.

And this weekend, there were just too many things piling up on the negative side.

I called the pharmacy last Friday, if I could come pick up my meds, and without any apology following, they told me they wouldn’t come in for another few weeks. They ordered them from Portugal because they were cheaper there, and they didn’t mentioned from Portugal, that they weren’t in stock due to economic reasons.


After last week at the LUMC, I was numb, but now the anger and anxiety took a hold of me.

After making clear this wasn’t up for debate, and whatever best they said were doing, it is only their best to me, if they get me my meds. After many squirming and avoiding the subject, they told me they arranged something for 15 days, and by then the order from Portugal would arrive. So this Tuesday or Wednesday, I would be able to come pick up the meds for 15 days. But I kept being sceptic. This isn’t the first time. So all weekend I was nervous what to say or do when I would call them on Tuesday, and they would tell me they (supposedly) did the best they could, but are very sorry to inform the meds aren’t in for at least the next few weeks.

Ramon wasn’t his usual self as well this weekend. And that made it all the more difficult than it already is, and that tomorrow I will have to visit my gastro-enterologist to get the results back from the blood- and faeces- tests, makes me all a little anxious.

I am just managing to get through these days. But holding on to the bright side, is harder than I thought, especially now I am the only one in the house. Ramon seems to be stuck in feeling sad and angry, and is very cynical. And it would be so easy for me to give in to that same feeling. Because I feel it too, especially now everything seems to pile up, one blow after the other.

So I will face the visit to my gastro-enterologist tomorrow with my head up high. Nothing is set in stone. Ramon just called to tell me, we can pick up the 15 days of meds this afternoon, after he had called the pharmacy for me.

That is one positive thing to add, so maybe the tides will change…

I’m just holding on to the wonderful, peaceful moment we had this weekend. When I woke up on Sunday morning, we were four on a row. Kuzco snuggled between us with his best friend, and was even fast asleep when I got my camera to make a picture of my best friends, and loves of my life. But most importantly, I made this serene picture, to convince myself that even in these dark times, there are still tiny moments of joy. And I know, that as long as I still recognize them, the positive side isn’t all lost.


nap time





Well, here I sit… a little numb, wearing my brand new Flag Nor Fail shirt, that arrived yesterday after we got home from the LUMC. It couldn’t have arrived at a better moment.


love life


Love Life.

I so much wanted this shirt. Because I do, I love life. And now it holds more meaning to me than ever.

We were so full of hope. That was the biggest reason I was so nervous. Not only about me being as clear and articulate as can be, but my hope blossomed for a moment. Could there be an ever so slight possibility, I could be better, feel better…. Think about a real future instead of, only as far as tomorrow.




Except, none of that hope, was answered. It was just like every lottery ticket we ever bought. The moment you buy the ticket, you get carried away with the happy hopeful feeling, this is going to be the one that will make all your hopes and dreams come true. Only to be shattered, and maybe win half of the spend money back, as a kiss-off.

I will never get better. This will never cure. There will also be no trials for my decease, simply because it is too rare, thus not profitable. The one I had set my hopes for, the one for Cluster headache, is not compatible with my headache. So I can’t participate in that trail as well.

The medication I take, will eventually run dry. It isn’t manufactured anymore here in the Netherlands, and it has to be ordered from Austria. But even now as we speak, Austria makes it harder and harder to deliver. The medicine is simply not profitable enough.

I will, however keep in touch with the LUMC. That was another major issue I wanted to discuss. And I succeeded.

When we left the LUMC, I was disappointed but satisfied. I did good, and I did get 1 out of three of my list done. Sad thing is, that I rather had one of the other two. And to hear I will never get better, with the logical conclusion, that eventually my body will fail due to the adverse effects of the meds, was a little killer smack in the face.

Ramon was so quiet in the car as we drove home, it made me nervous. And his eyes….

That’s what made me want to cry. When I asked what was wrong, he first didn’t want to say.

When I asked him if he was angry, disappointed, or sad, he finally answered.

‘ I’m so sick and tired of it all. I can’t take it anymore. What’s the use of trying so hard? Why should I want to save for my pension. I will never get to enjoy it with you. I’ll be alone, in a crappy apartment, no parents left to go celebrate their 85th birthday, no children to remind me of you and me. And our future? Ha! If someone is sitting up there on a cloud, a “God”, then what did we ever do to deserve this, and why does everything has to be a struggle? I’m fed up with the everlasting ‘you have to see the positive side of it all.’ Which positive side??? ‘

I’m certain I haven’t quoted him to the letter, but this is what stayed with me. And it made me so sad. I tried so hard to find comforting words, but nothing came up. I hated myself for it. All I could do was try to keep my tears down, and softly squeeze his arm. The lump in my throat re-appeared in full splendor. I felt so responsible for the way he felt, and it took all my effort not to get lost in the guilt.

I looked at his eyes again. They still looked the same.

I couldn’t hold my tears anymore. ‘ I’m sorry, I feel so responsible. I don’t know what I can do to make it all better. I love you so much.’

There it was…. A little smile, and his eyes turned softer for a moment. ‘How could this ever be your fault? It is just too much to take in, everything that is going on right now. And I always kept hoping, one day, one day…. Now that hope is brutally taken away.

For me, nothing has changed really. I learned early in my illness, hope doesn’t work for me, it immobilizes me. It makes me want the things I will probably never get, and makes me stop looking at what I have right now. I never lost hope, I just parked it in the basement. And sometimes, not too often thank God, I want to go out for a ride, and bring it to the surface. But eventually it is only there for a good polish, and then I store it back in the basement. I just doesn’t do me any good, but it’s nice to know, it is where it is.

I love life.




I love my life. I love what we have accomplished by hard f***ing work. And I will keep working hard as f***, to make every day I have, something I am proud of. The tears I cry today is because I feel sad, and angry, and disappointed. But tomorrow I will smile again, because I choose to be happy. Life sucks on more than one occasion, but I still love it.




Just like a football player, I have done everything in the right order, not to jinx the outcome.

When I woke up, I let my left foot touched the floor before I stood up. Brushed my teeth, shaking my head beginning from left to right. Got dressed, and did everything again with full focus not to mix up my left from right.

…..That wouldn’t be the first time you know…..

Everything went smoothly.

I decided to wear Hal Jordan/aka/ The Green Lantern today. Never hurt to have a little superhero to back me up. And I want to stick to my memory list Ramon and I made, so I can use a little Will-Power to remember what my goals are, and make it happen.

I always wear something of Flag Nor Fail, so this time I will take my bright yellow pea coat. To stay reminded that I shall not flag nor fail in what I am set out to do. I will do my utmost best today. And stay bright and positive.

I will bring my memory list as well. I feel rather calm at the moment, but I know I will probably get nervous once we arrive at the hospital. So it will be a good mnemonic device.

I’m ready.

I’m all dressed, I’m still calm, and waiting for Ramon to come home.

I’m so glad he is joining me to this new venture.

With all my crazy superstitions, he will keep me grounded. I know I could do it all by myself, but I’m so thankful he is going to be by my side. It makes me even stronger than I am already.


I will take a big cup of chamomile tea, and take a couple of deep breaths….

I can do this…..

Something is going to come out of this….


It will not be in vain….

I shall not flag nor fail…..


morning ferry


When I stood on the ferry yesterday morning, I was all smiles. It was 7.30, and already it was nice and warm. I was on my way to meet my dad in Velsen-Noord, to go to the gym together. Ramon started a course that is held on every other Saturday for a few months, so he can’t bring me, or pick me up.

So while I stood on the ferry, in my mind I heard the deep baritone voice of the dockworker in ‘On the town’, singing his line….

I feel like I’m not out of bed yet the sun is warm, but my blanket’s warmer.’

I had the same image in my head of the opening scene of the movie. The sun coming up, the morning dew on the grass, calm water, All the steel factories in the distance looked a little blurred which made it look like a New York skyline in the morning, and big ships already loading and unloading their cargo, or being on their way. Barely any people up and about. And through the working sounds in the background, the seagulls, ducks and swans made with their splatter and chatter, the perfect serene scene.

This was the second day of perfect bliss. And I inhaled as deep as I could. Last week was horrible.

lock machine


Being angry with myself, that I allowed my stress levels go way too high, which made me feel worse than I already did, made me cross my boundaries. I wanted to do so many things.

I needed to do so many things,

or so I told myself.

So even though I couldn’t, nor needed to, I sowed the blinds and sunscreen. It turned out beautifully, but I know my anger took control. I really need to find a way to deal with all this. My own health that’s going down, Ramon is looking worse and worse.

Last Thursday was Ascension Day, followed by Good Friday, so we had four days off. With the exception of Saturday off course, due to Ramon’s new course.


bike repair


It were blissful days. Spring decided to play with summer for a few days, so during the day it is sunny and warm. We worked on the side-car. I tried to be the best assistant, because I don’t know squat about mechanics. It is so exciting to see the old and broken parts come off and be replaced. And I love to see Ramon’s hands work its magic. There is still a couple of things to do before we can ride, but I think I enjoy this just as much a riding together. So I can’t wait to assist again.




Friday we went to our favorite spot in the park, and sat there for hours. Ramon took his learning books with him, and as he sat there reading, I enjoyed my view. Listened to the birds tweet, and keep an eye on Kuzco in between. We took all kinds of deliciousness with us. A nice cold bottle of white wine, French bread, chopped vegetables, aioli, and pieces of grilled chicken. If I ever need to go to a happy place in my mind, I will picture this.




Saturday was yet another blissful day. Went to the gym, and the longer I was there, the better I started to feel in my head. All my worries were gone for a moment. And I was happy….and tired….but happy. I slept through the day, and when Ramon came home, we went to the beach. It was still 27 degrees Celsius at six o’clock in the evening, and barely cooled off till we left at nine. We were happy, relaxed, and cuddled till the sun had almost set.




Today it is Mother’s Day, and I have made chocolate truffles and cake for our mothers. The sun is shining, and it will be another warm day. Maybe we will go to the beach after visiting our mothers, or maybe to the park, or maybe just crash on the couch together. What we are going to do is, sit together,  making a memory list for Tuesday at the LUMC. To make the most out of our visit, and to be as clear as can be in what I want, wish, and expect of our visit. I am already a little nervous, so Tuesday won’t be any less. When I am nervous I stumble, stutter, and forget the most important what I wanted to say. So it is good to go over it beforehand, make a memory list, and practice with some roleplay.


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Joyce Kleine – Work in Progress