Work in Progress

Maandelijks archief van juni, 2017



This week made it ever so clear how important Kuzco and Malha are to me. How they pull me through with their silliness, cuteness, and happiness. Kuzco his devoting care for me, and Malha her giddiness.

My pharmacy called to tell me, my health care insurer decided not to reimburse my medicine I need for the CPH, anymore. So many calls have gone back and forward this week between me, my pharmacy and the health care insurer. Even though prior experiences taught me you always end up picking the shortest straw, I had to at least try. Of course I still haven’t received an answer from either of them. They are too busy placing the blame on each other, and both are telling me to pay for the medicine myself. I am just so sick and tired of the never ending struggle to receive the proper care, any care for that matter. Ramon often yokes about me being his little Miss Debit Entry, but the yoke is starting to get painfully real.

I did on the other hand, got a call from the hospital. Which surprised me a lot in a good way, because usually I have to ask for an appointment. The blood results were in, and it was clear my kidneys have gone worse. So the hospital called to apprise me, and to send me some new tests I will have to take, so I can talk them over with a new doctor soon.

What I really needed this week, was distraction from my mind racing with thoughts. Good thing it was hot as hell this week, so I had to find some coolness for our doggies on the beach.



So besides taking dinner to the beach to enjoy the sunset with Ramon and the doggies, I wanted to go when the day was at its hottest.



I haven’t been to the beach alone with the both of them, so I was curious if I would regret my decision, since my energy is almost depleted these days. But it was nothing I feared. Better yet, it was the most wonderful time ever.



Malha stayed with me, played with Kuzco, and when she felt surer of herself, she ran around playing with other dogs, and followed Kuzco into the water.



And all the while, she immediately responded if or when I called her name. I was amazed at the ease of this, and could only feel the extreme joy and laughter they gave me, by being so loving and happy and most of all, even though independent, so very obedient. As if I was the greatest and most fun person to be around with. So this was the best choice ever for some happy vibes.





‘Kuzco!!! Don’t be too exited!!! Your tail….. watch your tail….’ Joyce yelled when Kuzco and little Malha jumped around after one another with the wind pushing them forward.



‘Why can’t you be too exited daddy? It’s just so much fun running around in the park.’ Malha her little feet had to make double the pace, to stay beside Kuzco.



‘You don’t have to worry about that yet. You’re just a wee lass with a tail as straight as a stick with a pig’s tail at the end. When you are a bit older, and your tail looks like mine…. thén it’s time to get your excitement under control.’ Malha looked at Kuzco and shrugged her ears. ‘How very strange that is Kuzco…. Can we still play some on the grass?’



You see….

There is something very special about a cocker spaniel called Kuzco. It’s his tail. It is a very peculiar little thing. His long curly hair makes it look like a waving flag, but something happens to it when Kuzco is extremely happy. It spins like the rotors on a helicopter.

And because of that, Kuzco learned a very important lesson. When the wind blows harder than you can blow with your cheeks as round as a balloon, it is imperative for Kuzco not to be too happy.



On one particularly windy day, Joyce and Ramon decided to take Kuzco for a walk down the beach. But when it’s windy in the city, there is a gushing wind near sea.

Kuzco loves the beach so very much, that all his happiness couldn’t stay inside his body. And within seconds, his tail was spinning like a helicopter. All went well while he stayed between the dunes, but once he entered the beach, Kuzco was nowhere to be found.

Joyce and Ramon looked left and right, back and in front of them…. But no Kuzco. But where they didn’t look, was above their heads.

There he was, high in the sky. Even though he was a little scared, he was amazed at all the things he could see from up here.



He saw a bird hovering next to him, yelling at him in a language he didn’t understand. And he saw strange paper triangles that were on a leash. When he saw the tiny little people running with laughter after the leash, he immediately made a reminder for himself to suggest such a leash for himself.



Maybe Joyce and Ramon would laugh just as hard when he would run as fast as he could, wearing this same leash. It was a strange and peculiar world up here. And he couldn’t quite made his mind up if it was more fun up here than down there.

‘Kuzco, Kuzco!!!! Stop having so much fun up there!!!! It keeps you high in the sky!!!‘ Joyce yelled as loud as she could, because the wind made her voice never reach so far. But Kuzco’s flappy ears were also high in the sky, so he could hear her anyway.

‘But how do I stop having fun, when it’s so much fun???’

‘Think of having to go home right this instant! ‘

‘Right this instant?? But we just got here!?!’, Kuzco thought. And the second he thought of having to go home, his tail stopped spinning of disappointment, and he fell down.



Joyce was just at the right spot to catch him, so he wouldn’t hurt himself.

‘Your tail is spinning so hard, that when the wind gets beneath it, it makes you fly. And you can’t just go fly in the air, that is dangerous! You almost hit that seagull up there, didn’t you see? He’s pretty angry at you.’



So after that whole ordeal, Kuzco taught himself to keep his enthusiasm down, when the wind is blowing hard.

And then the strangest thing happened.

While Kuzco tried his best not to be overly excited, Malha stopped running next to him. Out of nowhere she bursts into an almost hysterical laughter, and dropped on the floor laughing. She just couldn’t stop.



‘What’s the matter little Malha? Stop goofing around and come join us.’ Joyce walked back to Malha, to come and get her. And then Joyce saw the reason why Malha didn’t come. Malha couldn’t help it. Because of the wind blowing through her hair, her unusually long eye lashes tickled in her ears. And it tickled so very much, Malha could only roll over laughing, and try to itch the tickles away. Kuzco had to laugh really hard about this. It was funny to watch, and now he wasn’t the only one whom was bothered by the wind.



So now there is also something very special about a cocker spaniel named Malha, it seems. It’s her amazing long eye lashes. It’s a very peculiar thing, those lashes. It makes her eyes stand out ever so beautiful, but once the wind is blowing harder than you can blow with your cheeks as round as a balloon, Malha has to wear a tiny rubber band around her face to keep her long, long lashes from tickling in her ears.











I think I am an even bigger fan now than I already was!



My dad took Ramon and me to see Wonder woman. I am a huge Marvel and DC fan. My dad introduced me to the comic books when I was a little girl, and immediately was hooked. So besides lifting weights, that is another shared love.

But I think this love for superheroes got even greater after I got sick. It gave me so much strength to keep going strong. No matter how hard the battle, especially mentally. Almost every superhero  became one, by suffering hardship. Of course the superpowers are a nice addition, but they all had to overcome their own tragedies. All stories are filled with hope, willpower, strength, forgiveness, and love. How could I not make this my religion? Why should I believe in something /someone that only makes you feel small, and guilty for the suffering  he endured, to ultimately die on the cross, for you to do better? In the end, all superhero stories are no different than the stories told in the bible. But with nicer people, with better outfits, all searching for their inner strength to become a better version of their selves.



Wonder woman’s story is a little different. She didn’t really had to endure any hardship to begin with. But she was taught to be a warrior. And her ‘weakness’ she had to overcome, was doubting her own ability, to eventually stay strong, keep pushing and trying to become the greatest warrior ever. And that is just the subject I’m dealing with at the moment, to stay self confident. Together with the fact Wonder woman, and all the other Amazons for that matter, are looking absolutely drop dead gorgeous, I really, really wanted to see that movie.



And it was everything I imagined it to be. After two Nano seconds of seeing the scene with the Amazons training for battle, I wanted to go to gym, and destroy my puny P.R.’s  with the greatest ease. Halfway through the movie I even had to cry. The way Wonder woman stood on the battleground which no-one dared to enter, fighting off the enemy, I took as a personal message to my own mental state at the moment. A boost of inspiration. And after the movie was done, I was so stoked, I had the terrible urge to wear a Wonder woman onesie, and to paint my mobility scooter in the Wonder woman logo.  My dad joined me in my hyperventilating  burst of enthusiasm in throwing in the craziest, silliest, amazing ideas to either buy or create all kinds of Wonder woman inspired things. But of course one look at Ramon his face, and my hysteria  cooled down…. For a bit at least.



I can’t wait to see the movie again and again. Together with The Green Lantern, I think this will be my all-time favourite. I really needed this kind of feel good, super-duper inspirational movie. This was an amazing movie, and a wonderful evening shared together with my dad and Ramon.

Today was a good day.



Here I sit by my lonesome. In the rather gloomy waiting area, waiting for an MRI. It is to rule out if my Crohn’s disease isn’t the cause of my extreme fatigue. My stomach is already bubbling loudly, even though, I have yet to drink the fluid substance that will make my bowels visible. 5 Years ago I had to undergo the same procedure, which I experienced as downright horrible. I couldn’t hold anything down at that time, either solid or liquid. So I had to drink the amount of fluid  three times in a row, because I couldn’t hold it down. I can’t remember if MRI even took place, I only remember the gross stuff, and the enormous quantity I had to drink. I think that is why I am a little nervous at the moment. I told myself over and over last night, as some kind of mantra, nothing is the same as last time. I can hold my drinks, as long as it is in small sips, and not to much in one go. But still… I have to drink it within an hour, will that be enough to keep it down?

So just waiting…. And writing a little to keep my mind off.



OK…. Bottoms up!


Nope! Didn’t make it. Nurses weren’t too happy with me.

I had to take another round, because the reflux was stronger than me. I only had half an hour, because they had forgotten about me. I felt a little rushed, so drank too fast, to still make it in time for the MRI. Second round went better  though. So five minutes before I had to go in, I was told to stop by the ladies to get the extra pressure off, since I have to lay on my stomache during the MRI. In my case, that meant I had to catheter myself five minutes before I had to go in. Never mind the rush….Thank God for  the large private rooms….

Last Thursday I got to hear from my urologist, I will never be able to stop with catheterization. This is something for life now.

Big, big bummer….

The only hope there still is, is the amount of times a day will going to be less over  time.

So instead of saving for a breast enlargement, I think I will save for a titanium urethra…

The Titanium Urethra!!!! (read with a loud heavy voice, and hands placed on hips, head tilted to the sky)  Yes! I think that would make a strong name for a Superhero alias.

Mmmmmm….. I see great opportunities….. and new spendex suits….

Now we’ll have to wait until next week for the results of the MRI, and of the bloodtests of my kidneys, since the values were not good last time. Next month I will have a cystoscopy, to see if no strange things in that area, are the cause of my extra pains and exhaustion.

One thing is for sure. I am glad somebody took me serious enough to rule things out with some tests, instead of blaming it all on stress, when I have such a huge medical history behind me.

Now to wait for the results, and the next steps I’ll have to take.


I am still figuring out what to do. I pushed it somewhere back in my mind, becaus nothing will change any time soon in the way my body feels, and I can do more if I focus only on the good stuff for now. I want happiness to be the dominant emotion, not despair.

So for now I am trying to accept the extra pain, and ever growing lack of energy, like my physician told me to, but I will not settle with this forever. I will not throw in the towel, I shall not flag…. Only sit back and rethink my strategy.

To make us girls, Malha and me, super-duper-happy, Ramon decided to start with our project we had designed in our minds.



A comfortable lounge area on the windowsill for me, and a new dogbed for Malha all in one. He measured and drew our design on paper, bought the wood we needed, and a collapsible workbench…. Thank god for the holiday pay this time of year….

And in the hottest week we had so far, Ramon was working his ass off, sawing, screwing, measuring once and twice, and all the while we were thinking of more ways to make it even more beautiful.



And so Ramon was recalculating, searching Google to find the stuff he needed to personalize Malha her dogbed into something amazing. But that was all out of our budget, soooooo…..



He used some battery charged Christmas lights I bought for last year’s Thank’s Giving party. Searched the internet on constellations, and eventually made a starry night sky in Malha her alcove dogbed, and the Big Dipper, which is her birth constellation, ( the second brightest star of the Big Dipper shines brightest over  Amsterdam on the 23th of December) on the panel you can see behind Malha when she lays in her bed. It was a precision work to cut the little light bulbs out of the plastic stars, but he set his mind to it. This is something he would have done if we would have a human little girl. She would have had a starry night sky in her room as well. Just as she would have a place to snuggle and hide, like a big tree with a hole in it, in the corner of her room, with branches and leaves and little fairies fluttering around the leaves made of little lights with dresses and wings on. So now Malha has a very own snuggle and hide place with a starry starry night sky above her.



When Ramon was done, we placed Malha in the alcove, wondering what she would do next… get scared and get out, or maybe stay put.

It couldn’t be more than we wished for. She lay down, and admired her new dog bed, and even looked up at the lights above her. Off course we exhaled with a loud, “Aaaaawwhh”, and then picked her up to cuddle her to death.



With little energy, but the greatest willpower, I put my love in the most beautiful thing Ramon made for me. I put some paint on it, and made Malha her pillow to sleep on, with the fabric I designed with my own drawings. Now it is a dogbed holding Malha her life story. Her birth constellation behind her, and her mommy and daddy their love story beneath her. My little lounge area only needs a cover, and Ramon will also make a little stairway for Kuzco and Malha to join me on the lounge to watch the boats sail by, and then it is simply perfect.



This is already one of my favourite place to sit, but when Ramon told me he made the first part of the lounge area extra-large so we could snuggle together on the windowsill, it is now officially my all-time favourite off course!





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Joyce Kleine – Work in Progress