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….