Berries, lots of them.

The past weeks we've had beautiful hot weather, like high summer.
Strange things happened in the garden.
The lettuce was rained away... just crushed under the hard fast large drops.

The red berries seemed to benefit tremendously from the enormous amounts of water and the long sunny days. And perhaps from the pruning of last year....
They'd grown high up the rose section, twisting between the branches of the two kind of plants, reaching high up towards the apple tree.
It looked like just another year of growth would make my whole garden one complete berry bush.

A few day ago I tasted a few berries and had the sour taste crawl through my mouth behind my ears. Not my way of enjoying the richness of nature. I'm not a sour-lover. No lemons for me, unless I can get them straight from the tree in Limone Italy during a wonderful summer, like we enjoyed so many years ago. The farmer took joy to invite me in his fruitgarden and taste the fruit the lovely little village was named after.
I was 15. Managed to understand the language and was shy, but determined to learn to speak it too.

The lemons were the sweetest I've ever tasted.
They were devine.

So a few days ago these berries were sour, but when I tasted them today they were not sour, but tasted like red berries should taste... for me.

I got a box and started taking them off the bushes.
Each time when a branch was empty, pruning it immediately.
Soon I had to fetch a large bowl, because there seemed to be berries under each leaf.
It was amazing!!

As always I threw some ripe berries in other parts of the garden.
Did so last year and it resulted in a bush at the other side of the gardenpath.

It took me over an hour to get all the ripe berries in the bowl, and still there is a lot on there that need to grow and ripen.

Weighing the harvest: 1,5 kilo!!!!
Never had so many berries.

It took me another hour to get them from the twigs and ready for consumption.

Some berries are used fresh in yoghurt, some have been put in the freezer, so the kids can take a box when they want.

And they all want their share. LOL!

Never had so many berries. But also never had berries so early in the season.

.Click the photos to enlarge them.

The changing me

Had a meeting again today.
The past week I was asked to accompany a friend of the heart organisation to an event, to man the information stand.
I agreed. I like to do it, especially with someone nice present.
The subject of the event was not a very well known one: inherited hypercholesterolemia. We're there for the relationship between the disease and heartproblems.
So time to have some thorough reading and good preparation. I like the know what I'm talking about.

During the meeting I asked the people who have the leaflets in storage if they can provide them.
'Order them yourself'.
'And in case I would get them in would I get the stuff there? I have to go by bus.

This resulted in a huge discussion. The depotholder refusing to provide stuff, just because he didn't feel like doing it.
I felt lured into activities I didn't want.
The intention was to accompany someone, not to organise it. And I've never organised it, so... Better first walk through the process with someone so I know what to do. That's quite reasonable, as the organisation is very strict in how they want matters to be done, and I tend to improvise and do things my way. (So in a way I have to protect myself against myself.)

It took quite some time, with my thoughts lingering on other issues while they kept on 'talking', and then the chairman stepped in and said he would bring the leaflets to the hospital. If only he knew where to bring it.
Well, as I knew nothing, I couldn't tell him.

A few months earlier I would have told them I would solve it, and would have gone through a lot of stress to get things arranged.

It also looked like I was there alone... none of the others had time. Until one of the other women stepped in. She has to drive an hour to get there.... She's a nice person, so we'll have a good time.

I left the subject with 'I'll mail around'.

Turned out the event was organised by a professional organisation.
I mailed them and was told the leaflets were already there. Was also given the name of a nurse that is our liaison.

Makes me wonder if I had learned to stick to my limits, was stubborn, or had some strange feeling of knowing things would work out without my effort?

All in all I can give plenty of attention to reading about the subject of the event.


Dentist desk and shedding my stuff like old feathers

It's like some people just don't care how they do their job. Or maybe I'm just an old nagging bitch.
I don't feel like it. It's more a bit of anger because it costs so much time and stress to deal with the mistakes of others when they won't own them.

So today I got a call...recognised the number and it was the dentist desk again.
I should attach their name to the number, so I know who's calling and I can let them call part or whole of eternity.

'Recently you had an appointment with the prevention assistant'....
It was like a light to fireworks....
Told her that I didn't have an appointment at all, but that the secretary forgot to remove the appointment, she herself decided was not OK.
But that I was just about the cancel the appointment to a meeting I couldn't skip. But that I would be able to go to the dentist.

She changed her she called to make a new appointment.
I refused.
Third reasons:  I had no gum inflammation but just brushed too hard, too well, too long, with a too hard brush before going to the dentist. And that I wondered why he couldn't make the difference.
And last time he told me to go I didn't go at all, but asked him is the job had been done well and my teeth were clean and shiny, and he said: 'Yes, they're perfect'.
And the third reason is that I think a 100 euro for 20 minutes is far too much. (If I would still work I would get 103 to 120 an hour, and it would be considered a high paying job).
I didn't tell her that drilling along the rim of the gums has created a dent in the teeth that love to collect dirt and I already lost a teeth because of that dent and the last time I was in the hands of a preventive assistant she told me I should clean my teeth better and she started drilling in the attachment of the I now have an open entry to my jaw, thank you very much.
Told it the dentist, but he couldn't see it himself or on the x-ray, and he loves to cover mistakes from his employees, so I'm just imagining things.... Hence the infections in my jaw that go and on.

I said that what most bothered me was not the mistake, but the fact that the person in question was not able to say 'sorry', but complained about phoning me and not being able to reach me.

A few minutes later one of the others send me a mail saying sorry.

Maybe it's important to get all overpowering and sounding angry over the phone.
But I was amazed about being so open and shedding my stuff like old feathers.

I know, I just need a good vacation or w home near the sea, where I can write and do my things without people bugging me over a tree they should have taken out ages ago.
Maybe I respect nature too much, maybe there's still some hope somewhere there houses a fairy.... (Don't think so...before you declare me legally nuts.)

Saw the time table of Hacking Health, I was planning to go to and was given free entrance to.
Starts friday afternoon and goes on until sunday evening. Each day stops at 24.00 hours and starts at 7.30 hour. Participating for a part is not accepted. (But I think the medical staff will walk in and out at their own pace and wants.)
I can't cope with such full I cancelled.
Wonder if they'll contact me telling I can come part of the time anyway. They love to have me as a participating patient.

Went through some mails I left aside the past weeks to get some relaxation.
Turned out the volunteer organisation wanted people to come for 3 meetings. Not enough people wanted to come, so they planned a new meeting which is over... in the evening, in the middle of the country at a rather expensive venue. Well, the coffee would have been great!

I started to write the person of the board who had send this mail.
They want to save on transportation costs, so why have us travel through half the country?
I have told in the beginning that I didn't want to travel, and don't want to work evenings, with some exceptions a year. Attending meetings is not part of the exception.

Then I wrote that I experienced that we just have to do what is decided by the board, and it leaves no room for good patient contact. The phone service is regulated in an unpleasant way, just adding stress.
I told him I have a family, and I have to fit in all activities. It gives me not enough room for all those side-activities the board thinks are important, but they are not.
We have to fill in long lists and stuff, whereas we report our activities during the regional meeting and the secretary writes it all down. That should be enough.

Ended the mail with what I really want to do: work in the hospital as heart consultant directly face to face with the patients when they need me most. No advertisement at the end, but just a leaflet with out name and logo.  When I do my job well, that's enough to create good feelings and make people want the connection.

I don't know what he'll do with this mail, but when he throws me out I don't mind.
It's far too much work and the added pressure by the leader of the phone service is a kick in the back.
I'm one of the two people with active health problems. Most others got a stent and some had some other repairs done and feel fine.
They've asked me... for my expertise. So use it!

In between cut part of the branches we took down this week, and leveled the ground for my sitting corner. Did the laundry and during the evening had contact with the kids, including some who live elsewhere.

It was like the day never ended.....


Not the 13th?

After a sleepless night this night was good. I slept deep and relaxed, .....until the neighbours started to makes a lot of noise, hammering like they were removing tiles in a resounding bathroom. Bye sleep!!

It gave me time to do some chores in the house, and then I thought to app one of my sons to come in this week when he's in the neighbourhood. He was here within a few minutes.
We talked about what I wanted and then he suggested to do some more in the garden. The trees need cutting and pruning and I can't do it myself.
We worked until I was far too tired, and had lunch.
Half of the garden was filled with branches.
So the son went and I made a lot of branches smaller with garden scissors. Until I had too much pain in my back and needed to sit down.

Then I checked my mail.
Never should have done that.

I have been away from my mail for two weeks.
Good decision to relax a bit, but bad for the piles of mail I found.

Quite some changes in the volunteer work... meaning: extra admin. And I hate admin. Just looked at the titles of the mail. Will read them the next days.

Mail from the dentist: I failed to show up at the appointment.
Tss... in the process of making an appointment she  must have written down a time and date, but she said it was not possible to have two appointments after each other (as the dentist wanted) so moved to the 24th.
I was called two weeks ago that I failed to show up and we agreed it was their mistake. So matters were settled. And now this?

Mail from the health insurance. We agreed on automatic payments, but this mail stated they would not receive an automatic payment for over 220 euro, so I should do it myself.
Why did they manipulate me in automatic payments when I still have to watch my mail as a hawk to see if I need to pay something?

Mail from the weekend event... I was just going to cancel my presence...
Couldn' I'm away from friday to sunday evening, talking about medical, technical and other improvements in the medical world.
Had to cancel a few plans for this weekend.

During my talk with the politician he told me to contact one of the local organisations to ask them if they would pay for a training as 112 centralist. I've always wanted to do that job, I know I can do it.
Got a mail back. They tried to find my file and they couldn't find it. Right.... There should not be a file about me.
So this lady mailed me, calling herself the trouble shooter. In case I'm on benefits or I'm not eligible for benefits I should meet for an intake... blablabla.
So I mailed her back that I'm not trouble, so there is no need for a trouble shooter.
That my question is very straightforward. Either they pay it, and I need to get registered and when they won't I don't want to be registered. Told her I'm 62, want to make a life for myself these 5 years I still have to work, but when they're not going to pay I stay stuck in this marriage and live poor.
I'm sick of  'mail us with your questions' and get a reply like: make an appointment. They could have said that in the first place.
For someone from that department reading this: state on the site: 'In case of a question, use this mailform to contact us for an intake, making a file about you and deciding if we want to hear your question.'

Mail from the home owner.
They want to tree gone. They accept their responsibility and asked for a quote: 1600 + euro.
And as it was in our garden and we had a responsibility too, they would split the bill in half!!!
No way!
I'm not going to pay 832 euro and 2 cents.

I googled the firm they was not to be found.
Cutting whole trees and removing them would cost about 1000 euro here, so that's far less.
So I wrote a mail back, stating we took the responsibility to clean away the junk that tree caused and took care of it by not using the ground around it, not to damage the roots. So that took away a lot of pleasure in my garden.
We wanted the trees gone when we arrived here, and we could have done it ourselves. No costs involved.
Bloody hell, I've paid rent 30 years....
I bet they haven't even been here to see that tree, but just base their request on the wants of the neighbour.
The tree can't be moved now anyway, as there is a dove and a young family in there...

By that time my heart was racing.
And I was a bit breathless.

Had a quick look in the other mail. A few weeks before the mail of the home owner I got a mail with a questionnaire about this new home owner... haha!!!

Then my dance-daughter told she was not among the chosen for the educational trip to Scandinavia.
That's the second time they pushed her aside for a trip. Made me angry.

And my second son told that their memorial jump in a re enactment event in France was cancelled due to some misunderstanding in the past between the present organiser and a person who is no longer among the para group. Some old misplaced grudge....

And then I heard someone say on TV: in half an hour Holby......
So it was dark... I had forgotten to make myself dinner...,  forgot to take my meds....

Said it on the app and my second son was just back from photographing an accident, also skipped dinner and brought stuff here to cook.
It was nice.
But I kind of saw Holby half....

Me oh my, what a day!!!

It isn't the 13th, isn't it?


New nephrologist

It felt like shopping... going by bus, walking into the hospital, which has become a familiar place, because I'm there almost every week. Smiling at the woman of the desk, who knows my name without thinking. Pushing the button in the elevator without looking and talking with the nice lady of the foodcar, who needs to be at the lower level.
On my way to the department greeting a secretary of the administration, greeting the nurse, and saying 'good afternoon' to the elderly people in the waitingroom.

One of the doctors had a quick look at me with a questionmark in his eyes. Guess he didn't expect me sitting there. Maybe the age, maybe the place. He couldn't have seen that I was reading the worst feminist magazine of the country. I took it from the pile, as I was surprised to find it there. The last time I was reading in one of the editions was 20 years ago, when I was visiting a feminist writer to interview her. The content was almost the same, the photo's more of this time, and I was looking for the stress of anticipation...getting to know a new doctor in my life, who can either give me rest or ease the decision to leave the hospital... but I didn't feel stress or even something unnerving.
In fact I was just tired.

She was a bit smaller than I expected.
The same kind of petite as my daughter, compensating with energy in a natural way.
She apologized for being ill, while joking about it. I said that of course I felt annoyed when standing at the desk, but I also liked the fact that a doctor took the consequence of being ill, instead of doing her job at just 50%.
It was kind of women between each other, reaching out, adjusting the mode of conversation, keeping it light, trying to grasp some sort of idea who the person at the other side of the table is.
I always wonder why people want to define someone else by their profession. Yep, I'm a psychologist and a journalist, worked my way through medicine studies without having the opportunity and the money to do the exams.

As expected she started with the Ibuprofen... the files said I was a user, and it's a dangerous pill to take. If I knew why...
Right at that moment I knew again why I had only one friend-doctor at internal medicine. I'm not looking for a mom or a teacher, I want a doctor who listens, hears what I need.
And I didn't need a speech and lesson again, so as a lame schoolgirls I said: 'In short: it shuts the kidneys down.'
Got the lesson again. Not at the level of the stupid child who presumably won't understand it anyway, but more at my own level, so protest didn't pop straight up out of my head, but I swallowed it away and smiled. 'Oh yes'.
'There's one huge problem...' she gave me attention, 'the nurse treated me like I was ibuprofen addicted, but I told her clearly I used it about 3 times a year, and I got the message. Before my kidney function dropped tremendously I hadn't used it for over 3 months.'
She had the last words: 'never ever use it again'.

No question why I used it, no alternative. Like telling not to use chewing gum and not to blow bubbles, without explaining that chewing gum will get a weird taste after a few minutes, and some bubbles explode with the sticky stuff grasping your face and chin to never let go.

So those files have a life of their own. Someone puts a mistake in it, due to not listening properly, and you land in medicine school with a 'stupid hat' on your head for a long time.

Asked again for a dietitian. 'Our nurses are very good'. I didn't say: ' I don't want your bloody nurses, I want a dietitian who sits with me to puzzle an exciting menu together, so I can feel a bit happy to eat again'. I said: 'I need good input as I'm bored with the way I eat: no sugar, little salt, low protein, low fat.'  She looked into the files again. 'Bloodvalues are good... You're doing great.'
Well, hell. I'm not doing great! Banana for breakfast, 2 sandwiches for lunch, 3 potatoes and a few veggies for dinner.... when I eat dinner. Often I skip it. Eat a few sandwiches. Is that great? I guess it is for people who can afford expensive meals, a salmon sandwich for lunch bought at the canteen.

Again I got more professional insight in how lonely people can feel, how pushed aside. I can understand people are driven to suicide, because they feel there is nothing to live for, while others exclaim: 'We don't understand, he had everything he needed in life.'
Well, leave your own seat... place yourself into the person in front of you. Leave your own frame of thought and listen...bloody hell, LISTEN!

Yes, my kidney function is up again... great! No question how that happened. Did I do something special to bring it up?
Well, maybe better not ask the question when you think you already know the answer you can't know.

That damn smile of me.. it makes people think they're doing great. But I can't let it go, because they wouldn't see me at all....

Maybe I love the sea so much because it doesn't ask, doesn't expect things, doesn't assume things, and doesn't pretend anything else than to be there, being subject of the wind, changing colours when the sun sets, and my shadow follows me with larger steps until it fades.

Yes, the cardiologist called before monday. They agreed on diminishing my medication., Ace inhibitor in half,  beta-blocker in half.
'What if the edema starts again?'
'You take the pills again.'

I tried stopping them two weeks ago. piled 2,5 kilo in one day...
Tried to skip 1 metoprolol a while ago.... blood pressure ran up after a few days.

Oh, I got the advice to stop gradually.
Didn't need that. I'm not a fool.

Then challenged the diagnosis. Didn't want to leave without that.
'I would have agreed with diabetic nephropathy when the diabetes would have involved large glucose swings, too high values, but I don't. I've always worked hard to keep them low, within the limits and at level.'
Again a dive in the files.
'Well, when we do a biopsy of the kidneys all diabetes patients show diabetic changes.'
Well, when you conduct autopsies, all people show cancerous changes somewhere in their body, which doesn't warrant the conclusion that a common cold is caused by cancer.
She looked at me...expecting me to talk and so I did. 'My first cardiologist warned me that living such a long time with such a bad heart would have consequences, as the oxygentransport to muscles and organs would have been below what was needed. He said I might be confronted with unexpected problems, as certain organ damage. I was a dancer, was well trained. When I came back I couldn't walk 10 meters without my muscles getting bad and weak, and muscle pain. It's still not completely normal. So I assume we can pass the diabetes hypothesis....'
She thought, and agreed.

I left after we agreed she would stay my nephrologist. Told her I would change cardiologist, maybe even go to the other hospital. She was not happy with that, as the files are on different computer systems. 'The cardiologist is a very open person, he can deal with that, and I can. I will hand deliver my info at your desk in time for the appointment.'

Blood pressure, weight. My weight was up 1 kilo since two weeks ago.... Not a word.

I left.
Not mad.
Not disappointed.
But not content.
Like I had bought the wrong colour of jeans, but still had jeans to wear.

When I arrived at the busstation my daughter was waiting for me. We went to the shopping center to fetch my medication, which was waiting for me. The young woman was happy to see us, took the time for a talk and when my daughter bought something with an extra little bag, she gave me one too.

Then we went to the second hand shop. I like to look around, wonder which people use the items.
Found small cups and saucers I liked and while he was wrapping the different elements, with care, we joked and had fun. His face relaxed, and it was like he went 10 years younger.

When I was at home and unwrapped the small cups I saw printed on the paper:
'Listen to your instincts'.

Time to ask the cardiologist of the other hospital if he still wants me as a patient.
And follow his advice whether he wants me to stay with this nephrologist or move to a nephrologist of the other hospital too.
I'm done shopping.


He compared himself with the world.

So our car broke down during the cold weather of last week and my second son was planning to come this afternoon to see what was the matter. It's not freezing anymore, so something that was frozen would be defrosted.

I didn't dare to do some work for the phone service as he might walk in with a lot of noise.

And later in the afternoon I started to get ready for the meeting. I kind of forgot that the bus takes such a lot of time. So I had to hurry to be in time at the busstop.
I arrived in time at the hospital, could walk through straightaway, and was told by the secretary to find a bread I like. (No rucola).

It was nice to see the others again, and ity was good the other woman was not present. It created a far more relaxed atmosphere.

He came in rather early, took a chair outside the circle and that surprised me.

When he arrived he shook hands with every person. His boss shook his hand and called him by his first name. When he arrved at me he was surprised. With a bright smile I shook his hand and sad 'hi ...mentoning his frst name, we know each other.'

He finished his studies two years ago. He looks a lot older, so I guess he had a different job before this.
He didn't work with patients, but was advisor of the board. When I worked there at the hospital that was the job for those who could learn well, but didn't have the human skills to deal with patients. So I think he needs to make 'patient hours' and that's why he works at the other hospital.
I might be wrong...

He started with a photo of a tropical island, telling that in the past he had to use a travelshop, but nevertheless he went there often. But now he can book online. To show that the world has become more digital. I started grinning, as one could say he compared himself with the world. LOL!

He's working on a project to digitalise patient care.... When I told him that I missed a good psychosocial care plan, he didn't understand that that is more than psychological care.
That gave me the feeling: get me on the development team, because you don't know one bloody thing about emotion.

I asked him why they want to go digital to a high level. when they can't deal with simple emails to the cardiologist. He didn't like the question. "You can't just plunge patients into an all digital care-world when you can't fit a low level of digital patient care into the present world.'

I had the expected sharp moments and they were good. He was not able to deal with them, but his boss picked it up.
He was speaking about patients dealing with changes in medication themselves. I said that I thought he was creating a world which can't exist when cardiologists tell patients they're not able to give them the knowledge they want in 10 minutes.
And there were some more moments like that.
It was not only paytime, but I mainly was criticizing a researchplan the way I would have done with my own students. It has been my job for 5 years.

I wonder about the psychological consequences of what they want. Waking up and your phone asks you if you have breathing difficulties..... Would maker me feel more ill than I am... He said it would take just a few seconds to answer, but he doesn't have any understanding I don't want that in the morning, because I would feel the patient and forget to be grateful I'm still alive.

In the meantime I've got an invitaton of the patient care coordinator of my hospital to talk about this last consult. Used it as an example why there is more to patient care than just having a consultation. The hospital wants to change communication into more patient driven care. So the patient tells what he or she needs and the doctor replies. But the doctor needs to be able to deal with this.

Went home in the car of a very nice colleague. Took 15 minutes instead of the 1,5 hour with the bus.

So all in all a worthwhile day.


Not nice, but had a good laugh.

Considering that I don't feel well,  need to get rid of the high blood pressure (Yes, the systolic pressure is very high), and I have to do a lot of other things that take a lot of time, I decided to call in ill for the meeting of tomorrow evening.

Then I saw the agenda... stating that my new cardologist is guestspeaker on new ways of consultations with heart failure patients.

Not nice, but  had a good laugh.

He'll get some very interesting questions...

Made an appointment with one of our local political leaders for thursday.
Her invited me after a through comment on one of his online fb-posts.

On friday the nephrologist is planned.

We had a nice weekend, as the other part of the twin came and stayed here until this evening.
Her leg is finally healing with the help of the fysiotherapist.
It was very relaxed.
But the blood pressure stayed far too high and I got swollen feet and legs. Not good....
Counting down to friday...

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