Writing about and living it





Tomorrow I should go to the dentist, a meeting, an information session, and a political evening.
I'm staying at home.
Why?
Because none of the boys wants/can drive me.

I woke up still tired.
My face hurts like hell at unexpected times. It's not when you have toothache and you eat an icecream, or drink a hot coffee, enjoy a sweet or whatever sets your toothache off. (Better to say: on).
It's a pain that either generates from the lower jaw under my ear  and moved to the front, or in my left sinus, moving down.
In fact I just don't know if it's toothache or neuropathy. I don't care, I want it to stop.

None can take me to the dentist.... imagine that....
They can do what they want all day, ar ready to take dogs and cats from a friend through half the country, and me?

Not that I ask them more than the absolute necessary things. Just hospital visits and the volunteer work. Not even to bring back the awful present I got last week..., not to buy a new bra in the center of town, and certainly not to have some fun. I haven't even been to the christmas exhibition with the wonderful fairies. Haven't been to Germany to get cheap groceries.
I'm stuck at the house like a 99 year old, looking at the same walls, cleaning the stuff of others, and solving their problems too. What I don't move away stays...
I don't have the money to use a taxi.

One of the girls has hurt her leg two weeks ago. She's a dancer. It still hurts a lot and I suspect one or more muscles to be torn. A hospital visit is planned for tomorrow, she wants me to go with her.
I gladly skip the dentist to go with her, but she's in another town, an even when I would go by train, I have to walk a distance that's too much for me.

So I woke up feeling like my life has no purpose, but to be there for others.
They don't care to spend half an hour to get me somewhere to get rid of my pain or to assist their sister.
I work hard to write articles for  magazine that shouldn't be filled with my stuff.
I'm happy not to have such an ego that I want my name under each and every written piece, but it would be nice to experience a paid job, instead of working many hours a day for nothing. I need money to move to a place where I can be happy. I want to be in nature, not in this stone city, with loud neighbours and never silence.

There is so much that bugs me (kids wanting the drill and not bringing it back, so I have photo's and other stuff waiting to be put on the wall, etc etc.).

Maybe I've got some flu, maybe...whatever... but I felt depressed today.
I miss someone of my own age to talk to for hours, I miss being hungry (thanks kidneys), I miss a relaxed time...

I heard the geese fly... and oh, how much I wanted to fly with them.

But I was writing articles, about heart disease and genetics and, how ironic, about depression.

Well, mailed the dentist that I want an appointment and asked if he wanted to prescribe antibiotics before extracting a molar. The articles of today are done. Tomorrow I'll have to find photos and maybe write more. And do all sorts of other things that need to be done and I can do from home, waiting for my daughter to call to tell me what the orthopod said.
And make a list of questions for the new cardiologist and nephrologist (thursday and next week monday). Why they refuse to treat the anemia is one of them.

I want a better quality of life...

Oh no!! - day





This was a typical 'Oh no! - Day'.

I couldn't sleep, to begin with. Went downstairs to eat something, because sometimes it's a low blood sugar that keeps me awake. Found out is was snowing...a tiny, little bit.

All gone an hour later...

Tried to write my articles and I was too tired.
So I made a call for the telephone service, which was perfectly OK.
In the afternoon I was yawning so much that the tears in my eyes prevented reading my own stuff.

Tried to take a nap, had a nap (yeay!!) and woke up with pain in my jaw. Didn't know if it was neuropathy (my feet were hurting like hell too) or tooth ache.

No way I could find out. One of my daughters has hurt her knee last week and she had her whole leg full of large blue patches. I told her to go to the doctor again. She didn't. Argued that the doctor spoke about a contusion of her knee and it was done.
The past week she had a lot of pain and it didn't get less, today she saw new blood patches under her skin, moving downwards. So there's a fresh bleeding in the leg. Probably torn muscles.
She's a dancer!!!

So we told her to call the doc and have a referral for the ER.
The woman taking the call...told her to go to the doctor tomorrow....

In the meantime one of my sons arrived here to fetch the car to drive her to the ER. I was hanging clothes and putting my pills in the bag to go with him. So he could return home.

Mu tooth ache became a lot worse. Painkiller I took didn't work, so I had to take something which is not good for my kidneys. Under normal circumstances I take it at the first sign of a problem and that's it, but the nurse didn't want me to take it. So now the problem is far worse.

I hate going to the dentist. Had a very good and kind one in the past, but he works in Toronto now. If someone would pay my flight I would hurry to him with my mouth open and sit there reasonably relaxed until he had fixed my whole mouth.

Before him I had two female butchers...eh dentists. They demolished my left bottom jaw, so I couldn't have an implant there, and they not only gave me loads of fears for the dentist, but also a lot of anger.
After my beloved dentist I got one of his pupils who was even more fixated on cars and money, than on being a kind person. Most of the time he's very kind to me, because he knows I know where he comes from, but sometimes he's not the guy I want to have as a dentist.
When I wanted him to remove the molar which is hurting now, he refused. I understand why. The roots are turned outward. So he can't just pull the thing out, but has to work on it. And he doesn't know what it will do with my jaw.

Then I got my heartproblems, and I didn't think it was worth to invest the money and effort in my teeth, as I wouldn't live long anyway.
The fear crept in, then kidney problems, so a lot of medication is a no-no.
Then I had no money.
The insurance pays a bit, but not everything. I just don't have the money to create a fancy supermarket mouth, as I call the dental look of the moment. Most of my teeth are good, but just like one of my daughters I was born with some dental oddities. Didn't change some teeth and molars, so I still have my kid's teeth, and they're bad. The one hurting is one of them.

So I'll start with sending the practice my list of medications.
And then I have to go and face the guy's tremendous car and ego.
Well, I like his fancy car...not his ego.
And I don't fancy the bill... for a hole.

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Valentine's Day 2018





Happy Valentine's Day!!

Started the day with another gold for speed skating. Brilliant!
Then hurried to two meetings, one of them as postponed because the first took far too much time.

The meeting was fun. We really enjoyed it.
The group attending is usually very large, and between them are some 'characters' and ego's that claim a lot of attention and spread a feel that is not always positive.
One of them tends to disagree with me before I've even said a word. It's very disturbing to hear after each sentence: 'No, no, it's my opinion that....', like I'm hired to speak her words and I'm not doing the job well.

So I had a sense of freedom, and watching the others they had it too. We had good laughs, could speak our minds, and had a nice brainstorm that lead to a meeting that will be dedicated to all of that.
It made me feel more positive about the volunteer work.
Nevertheless I asked for someone to take over the information sessions in the hospital for a while. I was surprised that the other speaker (we alternate) asked me not to stay away forever. Didn't expect that.

I'm over my ears in writing. More pages need to be filled and HQ has asked me to write a piece for the national magazine. Great, but the telephone service needs a lot of attention too. Which means each call lasts about 20 to 30 minutes.
I'd rather have face to face contact and today I was told that when it wouldn't costs a penny a could do that too. Sounds great, but I want my travel costs back, and it also means the hospital should give me a room to talk with patients. The way the hospital is functioning now I don't think there are rooms available.
one wing is completely demolished and is ready for rebuilding. So whole departments are moved around.

Had some fun with the dog of a colleague. It's a service dog,but when her jacket is off, she's allowed to play. A few years ago I would have been afraid, but now not anymore and it's great to have some fun with such a huge dog.

This added to my blood pressure going down.... so somewhere between the end of the meeting and the end of shopping I lost one of my most loved ring.
My fingers are much thinner suddenly.... so it just slipped of my finger.
I feel sad about it.

I've always brought back things I've found, so maybe...maybe....
Went back to the conference room: nothing, toilet... nothing. Street...noop.
Mailed the shops and posted it on the council site.

Strange the ring got lost on Valentine's Day.... No, it's not a wedding ring.

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A better day





When I went to bed last night.... when I planned to go to bed...I found the washing machine had a problem. Knowing I wouldn't be able to sleep with that knowledge I decided to try and fix the problem.
It wasn't pumping at all, so I suspected some dirt in the pump. But nothing was found.

Trying the thing... nothing. Doing something and trying again, nothing.
Maybe a sock in the hose? Otherwise I needed the repairman and it costs such a lot of money I'd better wash by hand and hang it in the garden to leak and dry....

Before getting the hose open I tried the machine again and flushed the toilet when it should start to pump, to give a different pressure in the hose.
It worked!!!!

Went to bed far, far too late, but I had some sleep.

Today I felt a bit better than yesterday. Blood pressure was a bit down.. not much, but at least some symptoms disappeared.

Managed to write 1 article and almost finish another.
Made a decision to limit some of my volunteer work. New tasks are on my desk soon, but I can't do it all.

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Present disaster





The past days my blood pressure was quite high. I was just too busy to pay enough attention to it.
As I was stressed about several things I had good excuses for it, and I thought today would be a day of relaxation, so I expected the blood pressure to go down.

But the day was less calming than I expected.

I had a beautiful present for someone's birthday. Very beautiful.
We were very happy to have such a lovely present.
She rejected it with the words: 'Sorry, I'm going to get it tomorrow.'
I got it back, wrapping paper included.

As I have had my birthday two weeks ago she had a present for me. A huge thing. I thought it was a large cookie-container, but it turned out to be some huge cylindrical thing where a small candle can be put in. It was larger than my largest vase, and my first thought was: 'where do I put this monster?'

I was invited, not along the family as usual, but along a care-oman who thought the world of herself and did nothing else than showing how well she knew everything. Add to that a very loud voice,.... and she was sitting beside me.
Normal conversation was impossible. Of course I managed to get a word somewhere in between, because she needed to breathe. But that was it.

When I went home I had a splitting headache.

Right now I don't know where to go with my blood pressure problems.
Cardiology took care of it, but it turned out this week that it's now in the hands of nephrology (kidney department). None told me, so when I had a talk with the nephro-nurse I had the feeling that she should keep out of the business of someone else.

When I'm ill I have to report to cardiology, but... at the beginning of the evening my left kidney (the best one) was hurting. Later I also had some chest pressure. At a place I've had pressure before and nothing happened, so nothing bad is expected.
It's weekend and it's carnival. So the ER is crowded with drunk festive eejits.

I'll monitor the problem and stay at home. Will call my own family doc on monday.
Unless it's a real emergency of course.

And even though the deadline of the magazine is tomorrow, I'll give myself some rest this evening and go to bed a bit earlier than usual.

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Appointment with new cardiologist





Finally an appointment with a new cardiologist. Next week.
Looking forward to it, because I want to change all of my medication.
I have to calm down, as I feel like a rugby-player in the middle of a tackle.

Cardiology too refuses to treat my anemia. And the treatment of the blood pressure is now down to....tadammmm... nephrology. Well, i'm not happy with that at all. NOT AT ALL.

So I'm going to look for the mail of that nephronurse and ask for another one, as I don't want someone who lives around the corner here and who acts like the black bad stepmother, and who is worse than my own mother was (and she was absolutely not an image of a kind, moderate or slightly bad mom) to be my carer.

Isn't it ridiculous that no one told me properly that there was a shift in treatment of blood pressure between cardiology and nephrology?
They don't even cooperate!!!

I don't know how long this cardiologist will stay, so maybe I'd better prepare to ask that question first and pack my bags when he's there for just a few months. He's not a real bad one, as he is one of the former students of the departments I've worked two weeks ago, but I don't want to go over my story over and over again.
I want one who I can trust for a long time and who can work together with nephrology.
I there's no cooperation, it's a no go.

(I can't tell on the phone to patients to go for the best care when I don't want to do it myself.)

I feel very rich, because there is a good cardiologist waiting for me at the other hospital. But I'd rather not go to that hospital. Worked too long there.

The real problem is nephrology.
It's a mess there, I hate that nurse, I don't like the way they exaggerate the use of a few ibuprofens a year into nearly daily use (I absolutely don't use many, as I don't even have the money), treating me like a stupid kid when I object and tell them they interpret my words wrong, and I think their way of dealing with blood pressure is completely wrong, leading to undertreatment.

Yesterday I was at a day where they wanted to shift patient treatment from treating the disease to treating the person. Patients should not say I have a headache, but say I want to do than and this without a headache.
Well, I bloody have a heart disease that was missed a long, long time, because all told me asthma was the cause. They even didn't listen when I told them Ventolin wasn't working anymore.
Then they put me on the waitinglist so I nearly died from it,
cardiologist 1 saved my life and warned me not to take all those meds longer than about a year.
Cardiologist 2 said he didn't dare to change meds and caused kidney insufficiency and when my family doctor hadn't interfered, based on my pressure on him, (sorry, but it was for a good cause) I still wouldn't have known about it.
And I still have the same medication!!
I feel shit, tired, depressed, old, nauseated, or so stupidly hungry I can even eat old bicycle tyres or not hungry at all so I have to force feed myself. I can't fall asleep, because I'm wide awake at night (so I applied for a job as night carer) and I drift off after dinner.
And I'm often dizzy, my muscles are either as stiff as wood, or stop working far too soon, my neuropathy is worsening, so my body is trying to find a different balance as my toes won't offer feedback to the brains anymore, and I feel like I have to fight my way through life each and every day.

Oh, it keeps me going.
But they have messed up and my body has messed up and I want better doctors who cooperate!!
I don't want patient targeted care.
Have you ever heard of non-patient targeted care? LOL! Something like: I need to treat your heart, so give your pills to your neighbour.

I want teamwork.


I want communication.
I don't want a patient online file which can be reached with the same username and password as my health insurance account and my tax files, kept by the government.

I want them to talk to another and to me,

So it's teamwork or no work.

New model? Not used to it?
Get used to it!!


And don't tell me I have a fluid limit, and at the same time to drink as much as possible.

I'm not a puzzle, and that my image pops-up when you put the arts together?

I'm me.

So respect me.

The wreaths






The wreaths


When you held my hand
and we walked
past the wreaths,
I didn't dare to look
nor understand
until I was old enough
to run through fields of poppies
and celebrate the freedom
in the sun
without the loaded planes
the fears and silence
of all the young men
of whom so few returned

Year after year
the stories were told 
gram, you, my uncles,
the teacher at school,
and later 
Aunty Cathy, Ron,
and all those names
on endless rows of graves
that shouted pain and past
through eternal sky

The failure of man
to live in peace.

And now so many voices have gone silent
the uniforms untouched
the medals lost or sold
like they have no meaning anymore
my soul sees
your belongings in your drawer
which are all gone
and so are you.

I am not shy anymore,
none keeps my hand safe, 
nor my heart.
My eyes reach the horizon
and I still don't understand
the silent cries of all the people
all those who lie there and all those
who stayed at their homes and wept

But one by one
I see those wreaths
the poppies oh so red
that surround the messages 
and sometimes just a name

I hear the trumpet
and the weight of the short silence
and greet those
who keep our lives
in their buried hands.




 ©Syl 2018


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It's dark here







It's dark here 


It's dark here, 
like it's evening.
3 in the afternoon
and gloom over the fields
like all space is mourning
over the injustice in this world

People look away
put on their lights
and close their curtains
complain about the weather
and move on

leaving all those
on the streets
walking in the dark
the cold
in the injustice
they can all lift
by looking outside
and take action
to make a better world.



 ©Syl 2018

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A lot and a wishlist...




Today I went on changing the livingroom.
During about 15 years a lot has been collected under the table. Magazines, little things.
So I moved at all aside, put the old table away and exchanged it for two cheap black tables I bought a few years ago.
It looks great!
...when you don't look at the mess I have to sort and put away. LOL!

In the meantime I thought about my birthday (it's saturday).
I don't feel like receiving visitors.
One of my friends already gave me beautiful tulips and a vase, and someone else doesn't really care . I'm her friend when she needs me. It's sad to say, but oh so true.

And the only person who genuinely cares lives in another town and just has lost her sister.

So I'd better go to the place where I want to be: the sea.
A good thought, until I saw the prize for a ticket.
Now with the tree-problem...

It's all about money, isn't it?
Rotten computer, flat mattress, no bicycle, worn out flooring.
There's so much what needs to be done.
The drawer in the kitchen needs to be fixed... tiling in the bathroom needs someone who wants to invest time and sweat.

I'm soo tired....

All I want is a car stopping in front of the house, I hop in with some sandwiches and my bag and there is no need to think about problems and money for one day.
Just some fish at a special place near the beach, some shopping, even though my favorite shop is not open, and a coffee before going on the beach again.

Oh yes, I had a 'small' list of wishes, most of which are far too expensive.

- WW2 British uniform, air force, or ATS with trousers. (for re-enactment)
- Honeysuckle/ kamperfoelie
- small tattoo on wrist... a lotus flower
- a complete make-over
- eyelift
- a job
- somewhere else to live
- a dog
- a good photo camera
- a trip to the northpole
- a parachute jump
- flight in a Lancaster
- flight in s Spitfire
- and someone to grow old with in a kind and caring way.

A girl needs to have some wishes, doesn't she?

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The letter and the tree.




Had to start working again.
It's all for the good of others, volunteer work.
Sometimes it puts people together on jobs they shouldn't be.
We have one person working on the magazine who craves for the honor, to see his name, and boast it's his paper, while others do all the work, and I am one of them.

We, two people, work our butts off, and the guy doesn't do anything but trying to force us into bad written texts that are of no use.
Last edition none of his stuff was published, simply it didn't fit in the special subject, and he was so mad that he wrote a horrible email that set me off to write a mail too, stating I didn't want to work with such a person in this way.

Before I walked away during an editorial board session after I guided the paper through a time of bad weather as the head editor and was confronted with bullying by the person I steppe in for.
Just closed my notes, took my stuff and walked off after a very nice speech, stating I would never ever deal with bullying, not of me, not of others.

And with this guy I had the same.
When I work my butt off, don't tell me afterwards you don't agree with the subject when you had all the time and opportunity to state your case. And certainly don't use words that make me into a person I am not.

Today we had a meeting to solve the issue, as the show must go on.
All I could do was settle for explaining our work, who makes the decisions and why I cancelled one of his stolen texts.
And this in the presence of the regional chairman. I'd asked him to be present.

Well, I don't think much is changed, but I can't leave my other colleague alone. During the meeting she nearly bit his head off, but I understand, she works longer with him than I do.

Well, we'll see.

When I came home a letter was waiting. Ordering to cut the large tree in the garden. (Otherwise they'll throw us out).
We have three trees.
Two can be cut by the boys, no problem.
The other needs a professional attack, costing at least 800 euro, maybe even a 1000.

It's like I expected this to come.
We lived the past year as poor people, eating rather minimal. Not buying anything luxurious.
My daughter often eats at the job, so she doesn't lack anything. In that case I skip dinner.
I know it's not wise, but there is none who cares.
Tomorrow I'll have to see if I have enough money to get that tree down.
So there goes what I've saved to give my children so they can have a proper holiday.

It's just before my birthday. I wanted to go away for the day, give myself a day off from all the stress here. Can't anymore.

It feels like bit by bit all what made this house my home is taken.
The old willow tree, gone.
The nice neighbours, on both sides gone,
Privacy, gone.
I feel lonely here, not at ease anymore.
I miss the link with nature.
It's never silent anymore. When it's a nice day airplaines practie in the sky, when it' a summer day people yell in the gardens and don't care how others feel.
I want to leave here.
So I tried to save some money to do so.

And I can put it in felling a tree.
And be poor again.

It's like I deserve no normal live....


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