Work in Progress

Maandelijks archief van november, 2017




I’m picking up the pieces.

I literally cried all Monday, and when I went to see my physical therapist yesterday, I couldn’t hold back my tears from running down my cheek, again.

I was supposed to have been busy starting  to do some cardio at home, practicing breathing techniques and making myself stronger again after these brutal two months of hitting my body hard with all the chemicals passing through. But I just couldn’t reach my willpower, to start.

I felt terrible for my lack of enthusiasm, and was ashamed to admit that I had given in to my exhaustion and fatigue.

I thought it would be better to quit, seeing I most likely will do the same between now and the next appointment. I don’t want to impose on his valuable time any further, by having to say every two weeks that I didn’t do anything….again.

But to my surprise, and 20 soaked up tissues later, he told me, it would be more sensible to increase our visits to every week, instead of quitting. If I can’t get myself to do it at home, then at least I’m doing it once a week. And we are only going to focus on happy fun stuff. Playing Jungle gym of sorts. To take my mind off, and hopefully activate that feeling again where working out will be my Zen-zone again.

I was so thankful for his suggestion on how to proceed. I drove home feeling a lot happier, and was extreme happy with the extra tissue that was given.

That same evening, I decided to vacuum clean the attic. Tidied it up a bit, so everything was approachable and clean. I felt tiny sparks of wanting to start doing something. I cleaned the framed photos of myself,  Dana Linn Bailey and Wonder Woman, and smiled. This felt good.

I’m still not ready, but it will come back to me, I can feel it!





I’m feeling very pitiful today, so this probably will be a very whiny post. But I have to get it out of my system.


I have been crying my eyes out ever since last evening, when I asked Ramon what was going through his mind.  And all I want to do this morning, is to throw myself on the ground, crying, kicking and screaming like a spoiled toddler; “ It’s so unfair!!!! It’s all so unfair!!!!!!”


Ramon told me yesterday he doesn’t know how to deal with all this anymore. He feels empty, extremely stressed, and nothing positive in life to hang on to. Why should he even want to try anymore, when all we face, is one blow after the other. No matter what, when, or how. And when I asked him to be specific, nothing came to mind to counter his negative thoughts. Because they were all actual things, and none of them would change for the better, only worse. Our uncertain time left with a body acting like a ticking time bomb, the pressure of taking care for his very depressed  Alzheimer mother, his own body letting him down by only gaining weight, instead of losing weight no matter how hard he tries. Bills piling up, and feeling like a professional juggler trying to get food on the table till the end of every month. All because a few fucking assholes at the Health Insurance company, whom have decided that even though all the proof provided that they are wrong not to reimburse my medicine anymore, suddenly after 13 years. And even got as they asked, a signature letter from my doctor from the LUMC  confirming I really need this medication. They still claim they’re in their right not to provide me the medicine I need anymore. So we’ll have to pay for them ourselves.


We almost had to cancel, what undoubtedly will be our last anniversary trip to Paris, which he carefully planned to the greatest detail, to relive all our happy moments. But because of its very heavy emotional load, he couldn’t let go. He eventually altered all the reservations, in able to proceed anyhow… tripled the costs. Every moment we have, needs to be happy and joyful, making them count for some beautiful memories to keep, but somehow even the smallest moment has to be earned with all its might. Absolutely nothing comes easy. So why even bother anymore… why even bother life anymore…


Thus these words left me crying… sobbing…. whimpering … bawling.


How could he say these words? He is my life, my everything, the one who teaches me to never give up, and now is giving up himself. How could I not be the one for him, he has always been for me? The guilt is festering inside me. It weighs heavy on my shoulders. He told me over and over again not to feel responsible, but how could I not? All this shit is happening because of my illness, except for his mother of course, but even that would be a lot easier to deal with if I wouldn’t be ill.


I am dropping myself to the floor now.


It’s so unfair! It’s so fucking unfair!!!!







This was me last Friday, and most of the following days as well.


Last Friday was the last day for the injection to show any sign of effect. I lay in bed, staring at the clock, timing the rest period between the seizures. Hoping it would be more than 5 minutes, because then the last 7 weeks wouldn’t have been all for nothing.


5 hours.

That’s how long I could hold on the suffering. And then I gave up. I sat up straight, took my medicine, and within 15 minutes the seizures were starting to get suppressed.

I felt such a great sadness. So great, I couldn’t even cry. I stared at the crack of our bedroom ceiling, holding my umbrella to stay clear from the rain that poured through our ceiling. The night before a huge chunk of plaster fell down. The leakage we have for quite some time now, became too big to contain all the water that was pressing through the crack.



It almost felt like a metaphor for the way I was feeling. All though I  still can hold back my  greatest sadness, and release small amounts of tears from time to time, I still hold my plaster. I don’t fall apart just yet.

And I don’t plan to.


The next following days, I proceed in a certain degree of automaticity. I couldn’t, or rather wouldn’t, want to think and feel. But deep down, subconsciously, I was feeling too much feelings, and thoughts were running like pigs in a mud bath. So every now and then, tears suddenly rolled down my cheek, feeling as hot as boiling water. I didn’t feel like doing anything, and I wanted to do everything at the same time. I felt the pressure to start doing the things I wanted to finish before my kidneys are at 0%. Because when would that be, within 3 months, 6, or would I be granted more time?



Two things I really wanted to start, was painting an oil painting of Malha, and upholster our secondhand dining room chairs.



So I did. Like a madwoman.




I didn’t want to talk or see anybody, and I didn’t want to write about how I felt. I was scared if I did, I would drown myself from crying. I was so angry and disappointed of having too much hope, because I knew better that that. I even told myself beforehand, that I didn’t have hope, and I hated myself for letting tiny sparks of hope sneaky seep on through. How could I do that to myself???


Now, almost a week later, I am doing better, but still feel my head is all fogged up. I need to sort up my thought and feelings. It’s too much to process at once. When I was browsing the internet, I stumbled on this one.



Sometimes the craziest things can hint a spark of inspiration. This one instantly made me smile big-time. This is the metaphor for what I need right now!



I need to see the fun things in life, take it easy and enjoy it to the fullest. So will I forgive myself for feeling the way I do, try to store the mad woman, and take it easy to enjoy it all to the fullest again.





I was in a deep emotional low. The injection still isn’t doing anything but make me feel sick and feverish. I really hoped that after a week, something would change, but still nothing. Even though I still have a week ahead of me where some of its magic could rub off, I was feeling sad, frustrated, and angry. Not the most pleasant person to be around with, so I was glad Ramon spend a whole day away at work.


When Ramon came home, we were both feeling exhausted, and grumpy. Not at all in the mood to feel inspired what to eat. And then we bumped into a neighbor…


She asked how we were doing, and if I noticed any change regarding the seizures. Grumpy as I still was, I unintendedly growled, and felt my tears burning behind my eyes. ‘Jeez Joyce, keep the faith.’ She said with a concerned face . ‘I really don’t know you like this. You are my true inspiration you know. Always so positive, no matter how many obstacles are on your path.’


As if the veil of anger had lifted from my face, I looked at her and smiled. ‘What???’ I chuckled, ‘I am your inspiration??? You must be joking right?’


And to my great surprise, she wasn’t. I couldn’t believe what she was saying. How could I of all people, be someone’s inspiration?


But it was a true and honest compliment, and I felt honored. Still not convinced I am true inspiration material, I was going to accept this beautiful compliment. And my grumpiness was gone. Ramon and I decided to take a deep breath this weekend. Try to enjoy and relax, and take my meds on time. Next week I will experiment again.


I wanted to give Ramon a super relaxed Saturday morning, by walking the dogs myself, let him sleep in as long as he wanted, make croissants for breakfast, and join him with Kuzco and Malha on a scavenger hunt, Malha’s school had organized that afternoon.



It was a perfect day. Even when it started pouring with rain, we were still having fun. Until….



A Shepard dog walked dominantly around Kuzco when we were all standing around a puzzle to solve. Ramon noticed the attitude of both dogs, and tried to intervene in time. But it was too late. The Shepard dog and Kuzco got aggressive, and when the Shepard dog tried to get Malha as well, Kuzco started to bite whatever was in his proximity. That happened to be the hand that helped him, sadly enough. Within seconds Ramon’s hand started to swell badly.



And thus ended the happy mood we were in. We rushed to the ER, to check if everything was okay. Thank God it was, but by the time we walked out of the hospital, it was evening already. Again we were exhausted. Ramon’s good mood had passed, just as the day had passed, not to return until morning would break again.


An early sunny Sunday morning has arrived. Let’s repeat my good effort, and hope it will last today.


Finally a little bit of good news…. or is it truly?


I just got blood results back from my kidneys, and it turns out it has stabilised for now. My first reaction was being overjoyed. I was so worried the kidney value would  drop regardless of the little pause of medication intake, but luckily it didn’t. Because that would have meant my medication would have nothing to do with my failing kidneys. But now apparently it does….


Wait… what is there to be happy about then?


It only hit me when we got home. That would mean, if this injection I got last week, turn out it’s not helping, I would be stuck with my old ones. So does that mean this pause was only a short one? And only granted if I endure 280 seizures a day?


The doctor couldn’t give me any insurance. On anything. Do we know for a fact my kidney failure is caused by my meds? Do we know for sure what is the cause of the stabilisation? What is my prognoses? How long do I have? Will it all be over in three months if it retakes its deteriorating  speed? Or will there be more stabilising moments, and if so, is it depended on something.  Do we live on like nothing has ever happened, or should we keep in mind that everything we do could be the last ever?


So yes, it is good news for now, but there are so many unanswered questions. And then there is that little detail of the injection that still isn’t working. Which raises its questions on its own.


I started nervous this morning, to feel a flare of extreme happiness,  to end up feeling  numb and a lump in my throat, feeling the urge to say sorry over and over again, to Ramon for putting him through this nagging, frustrating uncertainty.


Ramon isn’t saying anything.


He went to his desk to try start his working day, after staring at the ceiling for a while when we got home.


I don’t say anything.


Not because I don’t have anything to say, but I don’t know what  to say. And I don’t know what to think, or what to feel.


After Ramon went to his desk, I lay down on the ground, with my head in Malha her dog bed. I wanted to stare at the stars. The stars like we saw in Italy. When Ramon and I just sat next to each other, pitch black around us, sipping our wine, holding hands, and enjoyed the quietness together with the doggies at our feet. Where Ramon pointed out Malha’s constellation, and I got to experience my first falling star. I wanted to feel that exact moment of serene happiness.



I don’t think I reached the same feeling, because Kuzco and Malha felt the need to help me brighten up a bit. I even got Malha her favourite toys because that would certainly do the trick. Sweet little nuggets.



Just keeping my fingers crossed a little while longer. Up until the end of next week. Maybe the injection will do some magic.


Then I can erase about 70% of my questions regarding our near future holding my kidneys, my medication, eventually dialyses, and the quality of life. Let alone the fact having to proceed the fight for my rights to get my medication reimbursed from my health insurance company. That would no longer be of  issue anymore then…..


Aaaah, life could be so simple……



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Joyce Kleine – Work in Progress