A while ago I had a meeting with peers. This felt very good. I also joined a peers group on Facebook.
Because I have no permanent damage from my cerebral hemorrhage it feels like I am not a peer anymore. I almost felt guilty about this. But I feel at home among those peers. Continue reading


What I Think is Going on with Me All This Time

It started with a cerebral hemorrhage on the 14th of February 2013.
Because of this my body goes in to shock and my metabolism into survival mode. Everything my body can do to stay alive and recover starts working.
First my body eats my fat reserves, I didn’t have much fat to start with, so it was my muscle tissues turn next.
In those 2 weeks in the hospital, this process went very fast. I came home skinny and very weak.

The body stays in survival mode.
The body starts to save any extra nutrients that it can find. This is why I gained so much weight so fast.
I saw the fat balls appearing under my skin, painfull solid discs under my skin.
After some time the weight gain slowed, but it took at least a year until it stabilized.

Maybe the doctors were right about my pituitary being hit. But may be the thyroid hormones and growth hormones are part of this survival mode. It forces everything to make more than needed to stimulate growth in energy supply.

At the same time the cleansing process starts.

The abnormal behavior of my peeing already started in the hospital.
I didn’t pee much for days and after a few days all came out. During the days I didn’t pee much, those solid disks under my skin increased rapidly.
Maybe it is some kind of battle between survival and cleansing. Survival mode wants to store everything, cleansing wants to get rid of everything.

The strange stool is kind of the same story.

When the peeing changed to kind of normal, the excessive sweating started. Which is also a form of cleansing.

This cleansing process above is working from the inside going out. But on the inside there is also a cleansing process going on.

Contaminated cerebrospinal fluid was drained through the backbone into the muscles along the spine from the pressure of the hemorrhage.The immune system then had to dispose of it.
Because I already have connective tissue growth in my SI joint, this becomes my weak spot. Waste material doesn’t have enough space to pass out of backbone, that’s why nerves get pinched and cause terrible pain in my back.
It the beginning the pain was so terrible that I could hardly walk.
Now the waste gets less and the pain gets less.

All this is reasonably stabilizing.

Muscles are coming back, fat becomes less, peeing is almost normal and the sweating gets less.
My back is sometimes worse than others, there are even days I have no pain at all.

The body was also tired because it was so weak.
Not much muscle tissue, but gaining weight is heavy and tiring.
All these processes going on is tiring too.
And waiting that long for an operation is tiring mentally.

I can’t stop this process either, not even for a short time. The body goes on with healing, tired or not.

While this all is going on, a second process starts at the end of November because of the operation.
So all repair work is double now.
Instead of only my body working to heal everything, now the healing process of my brain starts. A healing process which is much more tiring then just my body healing.

More about this brain healing process next time.

I Am Myself

“You are not yourself anymore”, “Be carefull that you don’t change too much”, these kind of things some people say to me.
It is probably because they don’t know how to deal with the changes in me.

“That’s how I know you”, “Finally I see things in you again from when you were young”, “This is so how I remember you”, these are also things some people say to me.
Family and people I know from when I was young, say these things to me.

The fact that I was different, doesn’t mean I am not myself now.

Yes I have changed;
I was a tough woman who solved everything by pushing it away.
I am still a tough woman who solves everything. Only I use a different way of dealing with life.
So basically not much has changed about me.

I couldn’t stay like I was.

When I got depressed, for me that was a sign I had to change things.
In those two years I was depressed, so much stuff came up, from which I thought I “solved” it, but I didn’t solve anything, I just pushed it a way.
This experience only, tells me that I can’t go back to how I was. I was kidding myself all those years and I had to pay for it with a depression. I don’t want to go back there.

Then the cerebral hemorrhage happened.
I also changed because of this experience. The pain I had that day, all it did with me afterwards. I can’t ignore it and act like nothing happened.

Than waiting for 8 months for an operation to take place. Not knowing if I would survive the operation or get another cerebral hemorrhage while waiting.

How can this all not change me?

And I don’t even call it change.
I call it growing.

You know what it is?

I am still that though woman who solves everything herself.
I only grew in the fact that I have emotions now, I am much more sensitive, more spiritual and I know myself much better.

So what if I cry? So what if I listen to myself more? So what if I want to try to fulfill all my dreams?

I am only a grown version of myself.

But I am still me.


Last few days I have had a lot of headaches.
I am very tired lately, busy with my head to much. Physically I am doing what they told me to do by rehabilitation, and I have to say that all is going much easier than in the beginning, so I am making progress.
But mentally I am having a hard time, which shows I am not ok in my head yet.

Starting up this blog asked a lot of energy from me, and now I am translating all to English, which is asking a lot of energy again.
Going to bed to late, the old pattern sneaks in again, and I can’t do it the old way anymore.
It doesn’t matter what time I go to bed, I wake up at the same time, so going to bed to late results in short nights, and those nights I need so much for my brain to recover.

But lately I almost feel “normal”, and then old habits can sneak in easily.

And yet I am happy with the headaches too.

First because I think the headache is a “sign” that I am not doing the right thing. So my body is warning me.
Second because I can have a headache again without being afraid.

Before the cerebral hemorrhage I have had a lot of migraines.
Since the cerebral hemorrhage I rarely have had headaches, but if I had one I became very afraid, I was basically waiting for the pain to become so massive that I had to go to the hospital again.
Which didn’t happen ofcourse, but the pain I had to go through with the cerebral hemorrhage is almost unbearable, it is actually not doable. I use the words “almost” and “actually”, because I did bear it and did it that day.

But that day and that pain made me so afraid of headaches that I almost panicked if I had one again.

Now, after more than a year after the cerebral hemorrhage, I can finally have a “normal” headache again.

The headache this time was a step forward for me again.

The pituitary

In the meanwhile I talked to the head doctor of rehab again.

All the blood samples were not taken for nothing.
There is a change in my hormone values.

This doctor thinks that the pituitary did get a “punch” from the cerebral hemorrhage.
Something which doesn’t happen a lot, but it does happen.
It is not damaged, just upset.
The bleeding occured 1.5 cm away from the pituitary gland.

For those who don’t know what the pituitary is, I will give a small explanation:

The pituitary looks like a small kind of pea 1 cm in diameter; it is a gland which produces hormones.
It is located in the middle of the head, right under the brain.

The hormones which are produced here are responsible for:
Blood pressure
Functions for male and female genitals
Thyroid function
Metabolism ( converting food into energy)
Water regulation in the body
Water balance by controlling the reabsorption of water by the kidneys
Temperature regulation
Pain control
Influences emotions
And more

The doctor is not completely sure, but it would explain almost all the problems I have been dealing with this past year, and what I am still dealing with.

Good news is that it is all healing again, so I could be “my old” me again soon. ( May be even lose some weight ? Ha ha ha)

Yeah !!!!!!!!!!!!!!

It feels good, I would rather be healthy of course.
But knowing that it might be this and I will probably be ok again, is doing me good.


I am one of those nagging ex-smokers.
Halfway that is, I only nag at home, all 3 “kids” smoke.
I still go to the pub and to visit friends who smoke, and I don’t really have a problem with it.

Last year, all 3 quit smoking, but I think the stress of my operation became too much for them, so they started smoking again.

Last year I also painted the house, between the cerebral hemorrhage and the operation, some kind of occupational therapy I think.
And H. did most of the painting, I wasn’t up to it at all.

A nice clean, fresh house is now being ruined again with the smoking.
My clothes stink.
They smell out of their mouths.

Things like that are what I am nagging about.

I quit smoking for over a year now, and I am not going to smoke again either, but sometimes there is still that feeling of, “yummy a cigarette”.

Looking back I am even glad I smoked.
I know that sounds strange.

But my cerebral hemorrhage is due to a birth defect, I was born with bad spots in my veins, because of smoking the time of when they would burst was brought forward.

So I had a cerebral hemorrhage at the age of 46.
Because of this cerebral hemorrhage, they found another bad spot on my other carotoid artery which was about to burst.
So I needed an operation, a major one , through my skull.
This other artery bursting could have happen soon, but it could also have burst in ten years.

But what happens when you need an operation like that?

They look at your life expectancy.

So if you are 46, you still have almost a whole life ahead of you, you will get the operation you need.

If I would have been 66 for example, than I probably would have died in ten years anyway, so I might as well die from the bleeding, so no operation is needed.

I waited for 10 months for this operation to take place, with a timebomb in my head, and I was slowly going crazy.
I think if I had to walk around wit hit for 10 years, you could have locked me up in an institution.

Kind of bizarre, isn’t it?
In a way smoking saved my life.


Last week it happened again, I had a fight with someone.
What it was about or with whom I had it is not important.
But the way I feel afterwards is ridiculous.

The day after I feel really sick, upset stomach, I feel like I need to throw up, some sort of mega nervous.

I have no control over my emotions anymore since the operation and this is so frustrating.

I don’t feel like I was wrong, I don’t feel guilty, so that’s not it.

I do think it is very annoying, because he doesn’t want to see my side of the story, but we just see things different, so we will never agree.

I want to let it go, just let it slip off of me.

Someone said to me: “Be a rock and let it bounce”. I thought this was an appropriate remark.

I used to be a rock, may be even too hard sometimes, but I could differentiate what was worth worrying about or not, and adjust to it. I could let it go or push it away.( which was not good for me)

Now I still can differentiate, and I know how I want to react or should react, but my head and body are leading their own life. My head and body don’t let it go.

I don’t know what to do about it.
In rehab they say it is something they see often, the emotional shield is porous or damaged, after a cerebral hemorrhage, or some other radical happening, but I think with me the whole shield is gone.

It is so frustrating.