Work in Progress

Maandelijks archief van oktober, 2017



Last Friday I received THE envelope from the LUMC containing the date of the GON-injection.


No time to breathe apparently. This Friday the 27th I will receive the injection. But the letter only contained the date, no further information about what to expect, or what procedure is following after the injection. So I immediately mailed them my questions, hoping they could answer me before Friday.


They replied with a consult by phone, Tuesday the 24th at the end of the morning, providing me all the things I need, and wanted to know.


So yesterday was Tuesday the 24th, and we were both kind of nervous. Ramon took a break from his work, and sat beside me for some moral support , while we waited for the phone call.


But the call never came. I waited till one o’clock, and then called them myself, only to be answered by an answering machine telling me they closed at 11.30 hours.




Are you fucking kidding me?????


I was so angry! How could they just let me sit there in agony, anxious to ask my questions, so I would know what to expect before and after?


Again I wrote them an e-mail, to please-please-please answer my questions before the 27th.


Late that same evening I received a call from a nurse from the LUMC  I had contact with before. I was flabbergasted. Someone took the time and the effort to apologize and trying to help me, even well past her official working hours.


The only thing she could do to help me however, was to put me above the list of people to call back, in my doctor’s agenda on Thursday the 26th.


At least I will know what to expect before I will get the injection, but I rather would have known it a couple of days sooner. Even though the nurse who called me yesterday evening, told me not to be nervous, I can’t really control this feeling. Maybe it has something to do with the fact this actually is my last straw. The last option before I officially am screwed.


That certainly became clear to me last weekend, when I wanted to congratulate someone with her 40th birthday. While I was searching for a nice card to send, I got an ugly lump in my throat. Boy, did it hurt!


And oh my God, for a tiny little moment I gave room to my despair.


40 Years old….


Will I ever get to celebrate my 40th birthday? And if I do, in what kind of state will I be in? Do I really get to Parrrrrrtayyyyyy, or will I be in a hospital bed, hooked up to a machine with 280 seizures, or hooked up to the same machine, but granted to take my meds to suppress them as much as possible???


I started to cry so bad. And that shocked me. It became clear to me Ramon was right all along about me being in a deep state of denial the last couple of weeks. It almost started to annoy me Ramon cried so much, and gazed into the nothingness more often than less. But now I got a glimpse of what he was thinking of all of those times. And it physically hurt so much to cry, only over such a little detail, that I didn’t want to think about how much it would hurt to cry if I would give room to all my thoughts and fear. I think I would die of tears alone.


The worst part is, that I secretly have built a huge feeling of hope, even though I told everyone around me I didn’t have hope this would work at all. But that was simply to yell over my fear of having too much hope. I once had too much hope, and ended up me sinking into a black hole of the darkest thoughts anyone could have, and the biggest ocean of tears. But it’s out into the open now…. I allowed myself to have hope….a lot of hope this injection is going to work. I just hope that if this last straw is turning out badly, I won’t sink into the black hole and die of crying all of my tears.


I’m worn down. My body is so very tired.

The new medication didn’t work their charm on me, not even at the 3600 mg. But they did however throw many of its side effects on me. So while I am decreasing the meds with one capsule per day, my muscles are twitching, my lower back hurts like hell, I’m not seeing clear, I’m terribly dizzy when I move around, I’m losing my hair, and I have water retention over my entire body, making my cloths fit a little too tight, and my eyes are slit-eyes because of the puffy upper eye lid. The only positive thing is my boobs are bigger…. again.

Yay  ……

While I am decreasing the new medication, I could take my old meds at their normal dosage at the same time. While my seizures are at its normal rate again, which is absolutely wonderful; the intake of the amount of pills is crazy. And seems to make the side effects from either work even stronger. I feel like a drug addict. And I even think I look like one….



Ooh, wait, this is Malha…..

Well it’s a striking resemblance, that’s for sure.

At the end of this week, the new medication will almost be near its end, so I presume the side effects will be almost gone as well. And hopefully make me strong and confident on my feet again. I don’t quite dare to go outside on my own yet, but next week….

Well….. then I will do everything that’s in my head right now. I feel a great rush pounding heavy on my chest. I nervously ask Ramon to check the mailbox every day. When will the GON injection be planned? How much time do I have, to do all the things I want to do? Because I want the dining room chairs upholstered so they are finally the way they should be. I want to draw all the drawings for at least five stories that are pottering around in my head, waiting to be written. I want to Jane Fonda fitness the hell out of it, together with outfit and all, because the Gym would be too enthusiastic right now….  I want to stand frozen in front of the door at least 11 times of a tattoo artist, to forever Ramon his scribble he made on my skin yesterday night with a pen.



I want to clean the house with a toothbrush so it even shines in every nook and cranny, I want to cook thirty or so dinners ahead for Ramon, for when the next horror begins. But all the wants, are like a sheep standing in a misty meadow. It’s there, but your eyes can barely see it. So I’ll leave it at that.

…. Shit sheep ……



I will just enjoy my ‘hug in a mug’ together with my audio book for now, and when I am up and about this afternoon to go outside together with Ramon, I will check the mailbox again for THE envelope of the LUMC.

You’ll never know…





I had a consult by phone today with the LUMC. Well technically me, but Ramon had to take over after three minutes, because I got a seizure.

It’s clear the new medication doesn’t work. But just to be absolutely sure, I will have to complete the intake to the maximum dosage, 12 capsules a day. It almost looks like o.d.’ing….



That means I have to sit this through till Sunday. Then I will have to decrease the meds same as I have increased them. One day at a time, one capsules less in this case. Good news is, I can use my old medicine at the same time while I cut down with the other. So I am anxiously looking forward to Sunday.


I have been given another option to try out. It’s actually for Cluster patients, and reading through the internet, it has shown positive results on two, a whole TWO persons with CPH.

The doctor wasn’t very enthusiastic if this is going to work, but seeing there aren’t any medicine left to try, I have to take every possible opportunity given.




I will receive an invitation soon from the LUMC to try a GON injection.


Everybody is so pleased and happy to hear I can try something new.


But I am not happy.

I am scared and angry.

And I even feel guilty about feeling the way I do.


280 seizures a day for the last two weeks has made me turn into survival mode. If I would give in to what I actually want while having these seizures, we don’t need to try anything anymore.


Simply put, the pain is so excruciating, inhuman to have to endure, after going through them only even one whole day, I just want to die.


And now, again, I willingly have to put myself through this again. Because that’s what I ought to.


Just to try something again that has the smallest chance of success. I just read up on the internet that the results are visible at its best after two weeks after the injection is given.

That means another two weeks or maybe even more, 280 seizures a day, if it doesn’t work.

Well, that is just the most wonderful prospect to look forward to. I’m so happy.


Sure, I’m glad the LUMC is trying hard to find something that could help my kidneys to stop from failure, but how long will I have to go through this? Because this is not enjoying life. This is not Joyce loving life.


I am so scared for what’s coming. I am so scared that this will turn out the same as every other thing we’ve tried. I’m scared not knowing how long I can hold on. I’m scared I’m too weak. I’m scared I will give up, because deep, deep down, that feeling is there, wanting to surface.


It’s like I have to fight Parallax from The Green Lantern somewhere inside my gut. Parallax is the physical embodiment of fear, the opposite of the green willpower.


Will the Green Lantern win from Parallax?


Stay tuned for the next episode….





I so much want to smash, destroy, kill and delete this little container right now. But I can’t…. Even though I am on half of the maximum dosage, and no tinsy winsy bit of change has shown. No improvement what so ever. But maybe, just maybe, it will work on the highest dosage.


Fuck hope!!!

I hate it!


Approximately 280 seizures a day, no sleep until yesterday, and only because of total depletion lasting a whole 10 minutes a time.


I write this feeling like I am completing an obstacle run. Three minutes a seizures, two minutes fairly lucid, putting it nicely, trying to be human in those two minutes. Sometimes I’m being graced with 5 minutes, which feels like forever.


I feel like I have my life back in those five minutes of being lucid. Having a laugh with Ramon, making jokes, steeling a kiss or two, hugging each other tightly to squeeze our tears away, and enjoying a cup of coffee together. I’m trying my best to help him a bit, with me showing a bright and happy me in those five or even two minutes, and maybe even dry Kuzco and Malha their wet paws, when Ramon comes home from walking the dogs in this dreary rainy autumn days we’re having at the moment.

We both are fearing the worst, even though we are not speaking the words out loud. Who knows we’ll jinx it. Because we desperately are clinging on to that fucking feeling of hope, the new meds are going to work their charm.


So I am going to hold on to the end. In for a penny, in for a pound.



One thing is for sure. I couldn’t have made it so far without Ramon, the doggies and my protective gear.


I know very few times, but still a few times, I could have said things nicer. And I regret them immediately, because he is trying his best coping with this, and I know his mind goes way beyond mine at the moment concerning our future, which makes his sad frown pierce deep into his skin, making it looks like the clock has struck twelve.



Even when he smiles, it stays put. And even though my non-Annie-like-pronunciations on some rare occasions, he still makes me coffee,



and prepares my food, when I want something else than medical liquid food,




with love….

A whole lot of Love!






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Joyce Kleine – Work in Progress