46. Each time they sound a smile of a friend enters my heart.

7/31/2017 Syl's bucketlist 0 Comments



Yesterday I was talking with one of my daughters about the new friends online that are such a huge support, just as my offline friends.

Some offered to go with me to hospital appointments, which is very kind.
Right now I don't need a person to go with me to talk to the doc, because going by myself makes me more focused and more critical.

But I don't know what I need in the near future.

I said: 'Sometimes internet is not as good as writing letters, otherwise I could put their letters of support in my bag'.

Don't know what happened, but suddenly I had to think about my charm-bracelet.
I always took it with me when I had to sing solo with the choir. I had a wonderful voice, but I was always third in line because two other girls were far more confident.

Maybe it's a good idea to start a new charm bracelet.
Charms need not to be expensive. I already have a bracelet to put them on.
And each time they sound a smile of a friend enters my heart.

What do you think?



.

0 comments:

Passchendaele 2017

7/31/2017 Syl's bucketlist 0 Comments





When you died
by the need to kill
and disappeared for forever
in the mud
of war

when you died
a father, a partner, 
a son, a brother,
and a dear friend,
you were just gone
and none even knew at the moment

The hell created by others
because the lives of you all
are just part of a game
of ego
and false power
took all you stood for
and more

And there you are
a name on a wall,
no grave
but you left us far more

You left us our future
our new generations
You gave us peace.



© Syl

0 comments:

So I try

7/29/2017 Syl's bucketlist 0 Comments



Today I started to feel better.
I'm sure it was due to all the well wishes ( ;)).

My head was not as clouded and my muscles could deal with movement longer and with less pain and tiredness.

I think the shock of being at stage 4 already and the realization that I have to choose for dialysis or refusing dialysis, and that it all means that when things won't improve I'm going to die sooner than later is fading.

Refusing treatment is not an option.
Dialysis at home is not an option. Not enough room for the machine and not enough room for the materials.
So the choice is no choice: hemodialysis at the hospital. My hospital provides the option for the night too. So that's good.

And that I feel a bit better helps too. It means things can improve.
Maybe I need to fight a lot less at the moment.

I'm not afraid to die, it's the road... that bothers me. It's that everything is about money and not about care...that bothers me.
And it bothers me that I'm alone.. no shoulder. Oh, I can do it alone. I know that.

But walking.... balancing...the thin line between being OK and depression... keeping watch I don't drop to the wrong side. Depression, self pity, they're so undermining. I can't let them happen to me.
It's a constant battle.

I love to be alone and do my things, but when I'm alone I feel lonely.
It's for a part because I don't feel happy in this house anymore.
And the spirit of: 'I'm going to survive that overall heart prognosis' is challenged a bit too much by the renal diagnosis. And by thee fact that I can sit on the couch and have great plans to clean and tidy and change things and when I stand up I'm so horribly tired.

With everything that needs to be done around me, and only me to do it, it's a vicious circle that needs to be broken.
So I try to do at least 1 thing each day, even if it's only the dishes.
But it doesn't tidy the house...
and it doesn't ease my mind.


.








0 comments:

Admin problems -2-

7/29/2017 Syl's bucketlist 0 Comments



The appointment for the heart echo arrived.
It's scheduled at the same day as the visit to the cardiologist. So there won't be a written report available during the consultation.

The health insurance was also present in the mailbox. It was agreed I would pay on their site, but  I had to contact them again because there was no payment link.
So I got the bill in the regular mail.
Those people are very very sick!!!

Well, at least I can pay and maybe then all issues will be finally solved. After precisely 6 months of troubles.

Bu I have to solve a problem here at home first: I can sign the card, but it has to be sent in a special envelope.... and I have none.

Now the rent-problem needs to be solved.
I will block payment for the next month tomorrow. I don't want  repeat of the problem.
Something, somewhere has gone wrong.
I paid, like they instructed. My daughter has read the letter a few times too, so we wouldn't make any mistakes.

I've decided that when they persist, I will go to a social worker. Not because I need that, but I want them to know there is some kind of extra eye looking to what they are doing.

Society is becoming more and more anonymous.
We used to be able to walk to the organisation that collected the rent. When something was wrong, we could talk to a real person.
Now we can't go to the office as it's at the other side of the country.

It makes me nervous, especially as they didn't even bother to confirm the emails.
I think it's impolite.
Well, maybe that's my age.... :)

.




0 comments:

...and I played calm.

7/29/2017 Syl's bucketlist 0 Comments



People don't like to read blogs about depression, illness and pain, unless they suffer from the same.
I know that, but I still write about my days, because I think it's important to give an insight what goes on, so people are able to help and support someone to feel better, or live through it too, knowing they're not alone.

No news on the subject of the financial administration. I bugged the organisation that collects the rent to confirm receiving my mail, first by using the regular email account and then I went to the part of the site which is aimed at doing business with homeowners and got a confirmation there. It doesn't mean anything, but I can show I've been busy with them.

Was reading on their site a bit, as they took over the renting out just a month ago, and read we don't have the income to rent in their system. I hope it's for starters. We're in the house over 30 years now.
I want to move but can't find anything I want: a small house near the sea.

Reading this caused a lot of stress.

The past months I've been fighting such a lot, that I'm tired and want some relaxation.
Stress piles up.

This morning my second son came to drive me to the opticien to get my eyes checked.
Before we collected the materials for some tests at the hospital. A cranky nurse gave the stuff.
I've decided to do the urine tests next week. Pity when the results aren't available in time. I couldn't have done it this week.

My eyes aren't checked. There were so many people waiting.
Did some looking around in the shopping center. Found two small books. The covers are of the same fabric and colours as my fabric backpacks. Kind of mexican or peruvian weaving.
Something nice for myself...need that.

Then we went home and when we wanted to leave the car the motor wouldn't stop!!!
My son was completely stressed out, and I played calm.
He managed to stop it after all, and immediately called the friend who is the mechanic.

We need the car this weekend. One of my daughters has to work odd hours at a village that can't be reached by bus in the weekend. And my son needs to go to the airport where they do parachute jumps. This weekend is very important, because they'll work on a movie.

I was glad my second daughter was visiting. She's a very calming person, lots of smiles, and lots to tell. We had a nice time.

In the evening I looked for information about what I can expect from the nephrologist and the preparations for dialysis.

.




0 comments:

Intense afternoon

7/27/2017 Syl's bucketlist 0 Comments



The past days I've been thinking a lot about the implications of the renal insufficiency.
If it's really as serious I might be on dialysis within a few months.
Dialysis is not very well tolerated by my heart, so I will deteriorate fast.
And when it happens there's no escape this time.

It makes me feel sad and a bit depressed.
I've cared for other people all my life. Worked hard to change things for the better in all sorts of areas: political, medical, educational, etc etc..
I'd expected this time would be a time for me, an opportunity to travel, have fun, to live life to the fullest and move to a little house near the sea, or even move to  little house in the UK.
Instead I have to juggle with money and can't even go to town here or get groceries across the border.
It's so sad.

Today a friend fetched me to drink a cuppa in town in his favorite coffee bar.
It was a nice little shop, right near the HQ of the paper I used to run, so I even enjoyed the ride, seeing all those well known places.
The coffee was great.

We talked a lot about the problems we're facing. He's got serious heart problems too.
Gave each other advice.

Telling out loud, what I'm facing, makes it even more real than it has been the past days.
I'm feeling a strong inner feel of wanting to speed my life up, as if I don't have enough time.
At home I want to clean and tidy things, like I want to make the house prepared to be without me.
And I'm starting to feel tired, tired of fighting too.

At the same time I want things to go on the way they are.
So I've accepted an invitation for public speaking for family physicians and one for heart patients at the same day at some kind of information day at a hospital.

It's strange to experience all those extremes of feelings.

For the second time in my life I was asked if I ever find some rest.

The first time was long ago, when a dear friend asked where I had my inner home, by whom I could find it. I didn't have an answer.

Now I had an answer: I find it when I walk near the sea (that's why I want to live there) and I find it with my friend in Belgium.
But when I was at home, alone again, I realized that it's not only about finding rest. When it's about resting my head on another shoulder... there is none.

That's even more reason to move to sea....

.

0 comments:

45. Recite: 'We will remember them.'

7/26/2017 Syl's bucketlist 0 Comments



Because this area was the front during WW2 we're got quite a few war cemetries in and around the city.

Several times a year special services are held, with veterans attending and sometimes I represent the parachute group of my son or I'm there as a photographer.

There's always one moment that is very emotional, because it entails a promise to my gram. I told her I would always remember those who gave their lives for our peace.

So I would love to recite the well-known passage of the poem by Robert Laurence Binyon (1869-1943), published in The Times newspaper on 21st September 1914.



For the Fallen


With proud thanksgiving, a mother for her children,
England mourns for her dead across the sea.
Flesh of her flesh they were, spirit of her spirit,
Fallen in the cause of the free.

Solemn the drums thrill: Death august and royal
Sings sorrow up into immortal spheres.
There is music in the midst of desolation
And a glory that shines upon our tears.

They went with songs to the battle, they were young,
Straight of limb, true of eye, steady and aglow.
They were staunch to the end against odds uncounted,
They fell with their faces to the foe.

They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.

They mingle not with their laughing comrades again;
They sit no more at familiar tables of home;
They have no lot in our labour of the day-time;
They sleep beyond England's foam.

But where our desires are and our hopes profound,
Felt as a well-spring that is hidden from sight,
To the innermost heart of their own land they are known
As the stars are known to the Night;

As the stars that shall be bright when we are dust,
Moving in marches upon the heavenly plain,
As the stars that are starry in the time of our darkness,
To the end, to the end, they remain.


.

0 comments:

Admin problems -1-

7/26/2017 Syl's bucketlist 0 Comments



It was just one of those says again.

Called the hospital to ask when they've planned the heart echo.
Not!

I told the secretary I need the echo done because I need it for the nephrologist.

Got a letter that I have received a warning that the rent for the house hasn't been paid. I have to pay within 3 days otherwise they'll charge another 137 euro.
Are they nuts???

The rent is on automatic payment so it can't be missed.
I check each month if it's paid.
And where was the first warning?
I first thought to neglect it as it might be a scam. But I looked up the emailadress.
Then checked my account: paid, as always.
Things like this make e stress out.

The insurance created a problem too.
Got a mail I have to pay.
But it was already paid. I knew that for sure.
Turned out that they had made a change to my account to get that huge mistake out of the system.
To clean up the lot they had returned the payment to me. Without warning me.
Can happen.
So I went to pay... couldn't.
The same problem as before: no payment link.
**sigh**, this makes me sick.

.

0 comments:

44. Army psychologist/pastoral carer

7/24/2017 Syl's bucketlist 0 Comments



I'm a R.A.F. daughter.

My father didn't tell much about the war, ever.

But his army chaplain trusted me with many experiences, because we shared our vow of silence.
Before he died he needed experiences to be shared, stories to be told.

It has changed me enormously.
I'm still anti-war, but I'm not anti soldier.
In fact, one of my deepest wishes is to become an army psychologist and pastoral carer.
I applied several times, but they considered me too old... whereas I knew there were women of my age working there.
It has hurt me. As if holding a gun and shooting exercises are the only ways to become a good carer.

I for myself know that our family history of the resistance, and all the hours with the army chaplain have given me a better insight, than I can ever gain with added education (I'm a fully trained and experienced psychologist) and physical training.

A few years ago I was talking with Tony Iveson, who looked during his last years so very much like my gram and father. He could have been my dad's brother.
We were talking about the guilt, that is, he was talking about it, and I was listening.
My reaction made him thank me with tears in his eyes.

He said to persist in applying for the job, because I really have to offer a lot. And in case I wanted to work for the RAF, I could contact him, so he could give me a letter to add to the application.

When Tony died I stopped trying.

More than ever I can do the job, work for and with those people who stand up for peace with their own life.
It's loss of talent....

Thank you Tony and Richard for trusting me with your deep inner thoughts and for seeing me and valuing me. I'll never forget you.

.





0 comments:

Entering the world of nephrology.

7/23/2017 Syl's bucketlist 0 Comments

When you smile...there's something good in it, isn't it?



I feel like I'm on a sliding slope.

When I was in hospital waiting for the morning or death, I didn't feel like this at all.
I had the feeling all was about attitude and inner peace. I got that. Didn't feel dependent on anything. Just being in the hands of life, of nature, and with the request to the nurses to place my bed under the trees and stars outside so I could die there, I was at rest.
If I hadn't survived it would have been OK too.

Now I feel like the frightened kid, standing on top of a slide that's far too high, far too steep, and at the bottom is nothing soft to land on, but those horrible hard concrete tiles. And no one is waiting there, no hands stretched out to catch me. No smile to make me smile back and give me some confidence.
Because ...when you smile...there's something good in it, isn't it?

A few days ago I got such a swollen envelope, it was like the ego of nephrology as shining through.
I had to redo the bloodwork, which is done a week ago in the same hospital. Do a test that will certainly lead to the wrong interpretation, and a test I have no time for at all.

I've been thinking, weighing, balancing the protocol with my wishes, balancing the protocol with my needs, thinking what would be more efficient and cost effective, balancing the causes of the kidney insufficiency with the way they want to go about.

The conclusion was clear: I have to go their way, but hell I want it to go the way I want.
It's better to die fighting, then to die passively depending on a system that stinks.
Oh yes it does.

For the past years I've asking myself and others why all the focus of money and research is on a mobile kidney for people who have a deplorable kidney function, and almost nothing is invested in prevention of kidney deterioration.
What do we know? Live healthy and follow a diet.

When my body was shutting down because my heart gave up, a lot of damage was done.
I know, because my muscles have never been the same.
I got a large amount of medication to keep me alive. The cardiologist told me we would review them at the end of my first survival year, to prevent over-medication.
Suddenly he moved to another hospital. Too far to follow him.
I landed on the desk of a cardiologist who told me, when I asked for a review, that he 'didn't dare' to change the medication!
When I asked him about the deterioration of the kidney function he said it was a normal thing. 'Quite acceptable'.

Then it dropped below 'quite acceptable' and he ignored me.
My family doctor worried and consulted a nephrologist. He said that the problem was probably due to the hot weather.!!! I was fed up by the whole todo.
Adjusted my diet a bit more.

I asked to adjust my cardio-medication about a hundred times, kidney function was dropping and dropping.
Then the bargaining started: 'When you don't trust it, why not try diminishing the medication in the controlled setting of the hospital?' I was treated like a small child who was not able to understand what was going on, so I didn't even get proper information about the condition of my heart.
But as far as I know it gradually improved.

My complaints...might be called symptoms by those who care, multiplied.
The doctor/student of internal medicine I was referred to didn't listen to me, but gazed and drowned in the beautiful eyes of his assistant 3/4 of the time. His conclusion: no underlying illnesses and nothing to be expected.
Findings: cysts in a kidney, fatty liver (I don't drink alcohol at all!), and far too high vitamin B6, and Folic Acid. I've used the last two for years after I was diagnosed with an amino-acid metabolic disease. Never before I've had a surplus.

Luckily I knew that a surplus can hide deficiencies of other vitamins.
So I lowered the dosage and: vitamin D deficiency, vitamin B12 deficiency, magnesium deficiency appeared. As expected. Vit b12 is depleted in about 30% of users of Metformin.
I started to take supplements. The deficiencies slowly normalized.

But why, after 20+ years without any problems would I have deficiencies? The kidneys? The heart-medication? Both?

The deterioration of the kidney function went on.
Gradually I developed all kinds of symptoms.
  • Numb toes...reaction: due to diabetes. (Might also have been due to Vit D or B12 deficiency, etc.)
  • Itchy skin
  • Clouded brain
  • Hazy vision
  • Muscle cramps
  • Blue spots
  • Insomnia
  • Vague pain in my back at the height of the kidneys
  • Crumbling and splitting nails
  • Dizziness
  • Nausea
  • Lack of hunger
  • Muscle problems varying from weakness to fast tiring and pain with movement.
And then there was a blood test with results that prompted immediate action to refer me to nephrology.

I informed the cardio-nurse, who wished me the best... which was in complete contrast to the kindness I'd experienced before.

Through all the past years there's 1 item bugging me:
Kidney problems started later than the heart-problems.
Might they be caused by the cardio-medication?

So do we stick our heads in the sand and only do some problem solving, like adjusting the diet just that absolute marginally bit, and prepare for dialysis?
Or do we stick heads together and adjust the cardio-medication and monitor kidney function and heart very well, get well informed about the choices in case dialysis is on the horizon and built a trusting relationship. because I'm completely fed up by doctors who want to fill their wallets and ego-bubble far more than my files with good results.

So I'm not going the way of the standard protocol.
I'm not going to jump on the slide.

I'll ask for a meeting with a good nephrologist, who has knowledge about nephro-toxicology and who can deal with my cardiologist or another one who wants this case.

Maybe I'm clinging on the railing for a bit more time to be normal.
Maybe I'm waiting for someone to remove the concrete landing, and ..yes...I'm waiting for those two hands to catch me.

After I mailed my own doc with the plans, I knew he would shake his head.
He likes protocol far more than creativity, and I understand that.

But I'm standing right in front of a prognosis with a death sentence, and it's OK for them, because it's the way they earn their money.
I first want to have a close look if I should stay here, see if we can alter things on this end, before I take the slide.

Let's see if changing the cause can change the outcome.
I want to know that I've done all I could.

.



0 comments:

Mistake in referral, and decision.

7/22/2017 Syl's bucketlist 0 Comments



So I got the paperwork from hospital.
In a hurry I have to collect urine during two days.
Need to go to hospital to collect the containers,
collect two days,
bring them back, and get bloodwork done.
When I make a mistake, like forgetting to collect, I have to start collecting again. So I have to go to hospital to fetch a new container.

And then I have to sit for 30 minutes in a position I rarely take for longer than a minute, in a silent room, without reading or whatever, alone, and the blood pressure is taken every 5 minutes.

I looked up the reason for this examination and found a few articles.
Less than 30% of patients experience white coat hypertension. Being in a neutral environment in a neutral situation gives a better blood pressure recording.
Great! But I don't have white coat hypertension.
In the past, with my former cardiologist, I've recorded blood pressure at home and we compared it with blood pressure recorded by the nurse and by him. All the same.
As a check I've also recorded at home when I went to the cardio-nurse the past years. No difference.
Another kind of articles wrote about the comparison of what we call a halter procedure: a complete day recording is just as good as a 30 minute one.
Which is nuts, because orthostatic hypotension (drop in blood pressure when you stand up from a chair) is not recorded when you sit all the time, emotional changes are not recorded, etc etc.

Problem for me is that 30 minutes in the position they want is almost impossible due to scoliosis.
And after raising 6 kids, 4 of them with very special needs, and 1 with a chronic illness I can't sit such a long time doing nothing. Too much stress in life, too much to worry about.

And why? Because the hospital wants to see if there's a need for blood pressure treatment, the leaflet said.
Well, I've already got a lot of treatment for high blood pressure.
Apart from that...that's not what I need from the nephrologist.

I mailed my doc to ask to see the referral.

In it I found that he mentioned Brugada syndrome as one of my diseases.
Brugada syndrome is a conduction problem in a normal built heart. It's a genetic disease, associated with sudden cardiac death. And it can be diagnosed by a special procedure to induce the rhythmic problems, and from the ECG.
I don't have that. I was diagnosed with DCM. My heart was extremely dilated, in such a way that the valves couldn't close any more. So the heart didn't look normal at all.
And I didn't have the diagnostic procedure.
On top of it all I was referred for genetic testing for DCM, not for Brugada syndrome.

So the more I thought about the tests, the more I experienced a strong resistance.
Part is due to my irritation by protocols. I want to see them as guidelines for thought and action, not as a law that needs to be followed under all circumstances.

Plus I was irritated that no name of the doctor was given, which gives me the feeling of being  a piece of laundry. Whoever gets what's on top of the pile has to fold it.
And the doctor was not a nephrologist, but an assistant. Which means he reports my case not the way it is, but the way he can deal with it with his present knowledge, which might be OK, which might be pretty minimal.

It all gave me the feeling far too much focus is on the end result of a chain of problems.
So yes, my kidney function is in the pre dialysis range.
Do we accept that?

Yes, when we take things from there.
No, when we also want to find the cause.

And the cause is clear: cardio-medication.
I'm still taking the same medication as when I was nearly dying from a tremendously enlarged heart with leaking valves. The cardiologist at the time told me he wanted to review the medication after a year, to prevent over-medication.
The present cardiologist told me, when I asked for it, that he 'didn't dare' it.
When a year ago my blood pressure dropped suddenly, I stopped taking certain tablets. It took 3 days before my body showed signs it needed those meds again., and with half the amount of those tablets I reached a lower pressure than before.

And there are more reasons I blame my cardio medication for the problems I have.

So I think my question for reviewing my medication and assess nephro-toxicity is a good one.
And when we have assessed it I think a new regime needs to be introduced.
That's a risk I accept, but in a controlled and safe environment.
As I'm having an echo this month (no date yet) it can be used as a base-line for the changes.
I don't want to have my heart deteriorate when my kidney improves...if that happens.

I took quite some time this evening to mail my family doctor, the one who referred me,
to ask about the Brugada syndrome. I think it's a mistake in my files.
But it's also a mistake in the referral.
And to make clear I won't do the tests according to protocol.

I want to see a proper nephrologist who knows a lot about medication and who can come to an agreement with the cardiologist about my medication.
Then I want to see what another scheme of medication does for my heart and kidneys.

I expect I'm over-medicated and hope my kidney function can increase.
I feel better than last week. My muscles are stronger and don't hurt as fast as before, for instance.

So when I was ready with the mail and it was to the doc, I felt a great relief.

Tomorrow I'll write a short letter to the cardiologist and nephorologist, whoever that is, to make clear what I want.
I don't want to throw away a lot of money on tests that are of no use at the moment.
I don't want to go to the nephrologist to prepare for dialysis, unless it's really necessary.
I want to stop the deterioration of my kidneys, feel better, and trust the people around me.
Because I don't trust my cardiologist for one single bit. He just doesn't care at all.

So let's see what the result is of this all.

At least my files will be a bit more accurate.

.
















0 comments:

43. Went to the 4-Days Marches

7/21/2017 Syl's bucketlist 0 Comments



The main event in our city, Nijmegen, is a special event called: The 4-Days Marches.

The festivities around it start the Saturday before.
It's a huge festival with open air concerts, music everywhere in the center in town, and a lot more.

And Tuesday early in the morning, the marches start. All 4 days people walk the same age-related distance of 30, 40 or 50 km, the routes are different each day.

On Friday the last part is walked on a long straight road, which is only called that day: Via Gladiola.
Because the flower of the marches is the Gladiolus.

The sides of the long road are crowded by people who sit there almost all day, cheering and applauding.
It's very special. The walkers, who are very tired, are motivated to walk that last part in a victorious way, even though their feet hurt like hell and their knees feel like they will never be able to bend. Without the public many would not have reached the finish.

As a small girl I accompanied my dad, who was a member of a care team of the National Post Office. I loved it.
As soon as I could I would help the care team. First by handing out towels, later by handing out tea. The older I got, the more responsible tasks I got, until a friend of my parents told everyone I had to care for his blisters. I had seen it so often, and he offered himself to be the first person I would care for. I did well, and was accepted in the care team.
Worked there for years, alongside my dad.

Later, when the careteam was ready at friday afternoon and a few years later when it didn't exist anymore, I joined the crowds at the side of the road and enjoyed the festivities.
I loved it.

I wanted to go this year so badly, especially as my kidney function is deteriorating so rapidly that I might be on dialysis next year.
On Thursday I didn't expect to go and felt really sad. My son has had my car all week because his scooter was in repair, but it was like he had forgotten my existence.
Without informing me one of my daughters called him and arranged that he'd take us with him when he went there. (He's photographer for the local paper.)

So early in the morning we went there, sat down and waited for the walkers.
Beside us were very funny people. I vaguely recognized the woman, and the sun was at the other side of the road, so for the first time that week we shivered. Which was nice. LOL!

In the air there was interesting traffic. A Boeing CH-47 Chinook seemed to land on the small airstrip nearby, but it didn't. It flew low above the Via Gladiola, returned, flew even lower when it approached the military terrain where my son was working, saluted the soldiers and went away.
Not much later I saw an airplane nearing. It flew very low, which was kind of frightening, as we have and airport just across the border nearby, and it looked like it couldn't keep it's height. It flew straight towards us, then turned to it's right, and flew in a curve very low, flew a circle, even lower, but it didn't salute above the military terrain. Perhaps the pilot couldn't wave the wing, it was there to observe or for any other reason. One way or another it was very impressive.

For hours on end we watched people pass by.
Some I recognized from years ago, and most recognized me back. Greeting me with a smile and a wave. A few came for a high five, to shake my hands, or said a few kind words. And one even came to bow for me, which made me remember a joke between us from 30 years ago!
And one who looks a lot like my father came to me for small talk, to show he's using a mobile phone with apps.
Some I know will be there again next year, some I saw for the last time.....

In the meantime the sun had reached us and it got very hot.
We used sunmilk factor 50, but we've got a terrible sunburn.

In the past I've been a photographer at the Marches, and this time I couldn't stop myself. I took hundreds of photographs from the bands that played between the walkers.

I'll put a selection of them on a seperate blog in due time, together with the photo's my daughter took.

I'm very happy I went.
Even though I have a terrible sunburn and my hands ache very much.
I've seen so many familiar faces. The fact they recognized me...

I hope to be able to go next year, again....

0 comments:

Time to call the hospital twice.

7/20/2017 Syl's bucketlist 0 Comments



It took 31 minutes to
1. phone cardiology.
I got an appointment, but only with the cardiologist, not for the echo.
So either they had forgotten the echo, or the appointment was made as a reaction to the kidney tests. I wanted to know what was going on.
It took quite a while waiting, but then the secretary had a peek in my files and said they'd forgotten to make an appointment for an echo. It was the 6-month appointment, not a reaction on the kidney problems. (Caused by heart-medication).
The person who makes the schedules for the heart-echo's was not at her place, so she wanted me to call back.
I said I wouldn't. So we agreed she would send a mail.

2. phone nephrology to find out if they'd made an appointment by now.
It's a week ago I was referred.
Yes...august 3. This secretary sounded a bit stressed when she looked up the date and it took longer than just checking, so I think I was still on the waitinglist for an appointment and she quickly booked me in.
And before I have to collect urine during 48 hours, have all the bloodwork done again (preferrably next monday....when I've received the paperwork) and I have to be 30 minutes early because they have to take blood pressure. (I take that myself whenever I want.)
I said I had some doubts about these tests, but she said: 'it's protocol'. Not knowing I hate protocols when they're used as laws.
She told me the paperwork was already sent, but it would take a few days because of the vacation.
Nonsense! The postman doesn't suffer from vacation.
And on top of it all: I'll probably get an assistant and not the nephrologist herself or himself.
I think they would be more informed by reading my medication list......

So I was not very impressed by this call.

In the evening I got the mail from cardiology.
Not just a mail, but a high security one... click a link, reach a page with a link, click that link, get a code, use the code... and then I found a very nice mail.... but the appointment was forgotten. LOL!
In the mail it said I would receive a written confirmation. So I'll wait for it.

I feel not very content with the way this goes.

22 days waiting for an appointment with the nephrologist.
I hope I feel better soon. When I deteriorate further there's no point to see an assistant first.
I's rather have an emailcontact to explain the situation in a few lines, give the relevant information and choose tests wisely. That's far more efficient than protocol-examinations.

0 comments:

Pension to 68 in U.K.?

7/19/2017 Syl's bucketlist 0 Comments


By keeping the oldies at work, we're creating a lost generation.


The UK state pension age increase to 68 will be brought forward to 2037.

Of course a lot of reasons are presented.
People live longer, not enough young people to earn it, etc etc.

Let's look at one of the two main reasons: people live longer.

This statistical statement is true, I assume.
People live longer. So they will need a pension longer. Pure logic.
Independent of health or quality of life, the pension is needed.

But does that also lead to the pseudo-logic conclusion that people can work longer?

In a way people tend to assume that living longer means living healthier.
We're told in many advertisements that old people walk faster, walk happier, and walk more supple than the generations before us.
So we think that health extends further in old age.
Can we draw the conclusion that in the near future a 68 year old person can be compared to a 57 one of the last generation before us?

Not often do I hear discussions, let alone research outcomes, link for instance dementia with the higher death age. More people get dementia... we know that. And people with dementia can get a lot older, we know that too.
So the increase of life expectancy is caused by stretching life. And that doesn't mean we add more years with better quality of life.

What needs to be asked is if the onset of age related problems also undergoes a shift.
Because only that would be a good reason to move the pension age forward.
In other words: are the people who stop at 68 under the new law as healthy and unhealthy as those who stopped at 57 in the last generation before us?

I haven't seen this question asked, and I certainly haven't seen it answered.

All I can do is look around me and see what's going on with people my age.
We still have to work 6 years (when we have a job).
Compared to when my father was moving towards retirement my 'group' is not as healthy as they were. Yes, we move more, and smoke less. but there are more people suffering from diabetes, heart problems, kidney problems and depression. The amount of people who can hardly cope with daily requirements is growing.

Less health leads to a lower production and lesser quality of production, so the costs of the products rise.
Less health also leads to more investments.
So making people work longer costs more.

In the eighties of last centurie people were aware of that, and the thought was that it was wise for older people to quit working early, so young people could have jobs, and start a proper career.
I'm in favor of that thought.

Now many young people are without a job. Their education is often outdated when they finally can get work, so they won't get the job after all. Add to this the lack of life-long jobs with the same firm, and lots of job changes, even within a year, and it might be clear that young people will be struggling their whole life to earn a proper living, with the consequence that building a good career is out of the question and caring for a family too.

By keeping the oldies at work, we're creating a lost generation.

0 comments:

42. Study ethics

7/16/2017 Syl's bucketlist 0 Comments



I would love to have the opportunity to study ethics.

It has been of the main subject in my life.

When I was young, my uncles loved to discuss ethical matters like war, resistance. We sat for hours discussing things, while my gram gave us coffee, tea, lemonade and her home baked cookies.
Often she would sit with me later in the week, reviewing the discussion, giving advice.

At university I often found myself discussion matters with my fellow students and professors.

It was in a time that feminists were looking for opportunities to confront the male population with their needs. But they forgot that motherhood was one of the important aspects of being a female. So there were not many females at the department of obstetrics and gynecology taking part in discussions there.

In the meantime I was a psychologist and a mom. My second baby died, probably due to ignored rhesus antagonism.

The hospital was an old-fashioned catholic hospital, under the strong watching eye of the vatican.
The feminists were pushing their views on the male part of the population, wanted to be boss in their own belly. The Netherlands was one of the most free thinking nations of the world.
But the subject of spontaneous and provoked abortion was a dangerous one in the hospital. Often women were referred to other hospitals and it was in the interest of the hospital, not of the women.

One day I forgot that the professor of obstetrics didn't like opposition at all.
We were discussing the subject of referral when the professor joined in. Suddenly it was very quiet and I saw it as an opportunity to state my case. And when he told me he didn't agree with me, I just treated him as a fellow student, so I gave my statements, expecting him to go against it.
By that time I realized my mistake and I thought he would throw me out of the department, as he had done so often before with students and alumni he didn't like.
To our huge surprise he said 'Thank you, I will think about this', and went away.

The next day I was called for.
He asked me to become a member of the ethical commission of the department.
I refused, for several reasons. One of them was that I was a mom and wanted to be in control of family time.

Ethics has since had my attention even more, and it has led to the start of the movement of ethical journalism, which centers around ethical ways of publishing...and non-publishing.

I would love to be able to give my ethical views in a more professional setting.

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0 comments:

No letter

7/15/2017 Syl's bucketlist 0 Comments



I expected a letter from the hospital, but alas. Nothing. Not from cardiology, not from nephrology.

The heartmedication I take is complete again. So my bloodpressure is within limits, but the pruritis has started again. The muscle weakness too.That indicates that the heartmedication is the main problem for my kidneys.
I knew that already, but this is very clear evidence.

It's strange that there is not another system  used than letting a patient wait the whole waitinglist and then have a nephrologist see him or her.

In my case, I would have appreciated a consultation with someone who reviews my medication on the subject of nephrotoxicity. It might result in prevention of further deterioration.
If they had done this 4 years ago, like my first cardiologist planned, I wouldn't have had kidney insufficiency.

Started reading about the present issue. It's like they have a far more intelligent approach in Belgium than here. They are aware that prevention is very important, and that early information leads to a better outcome of dialysis.

Well, I'm lucky I can inform myself. But when the medical world won't cooperate...?

Had a nice dinner with one of the girls, the dancer, who came home for a few hours.

This evening the international summerfestival has started. Lots of open air concerts. I love to go there, and I planned to go there. But I'm not so confident I can cope with standing and walking a lot.
Well, we'll see.

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0 comments:

41. A shared holiday house.

7/15/2017 Syl's bucketlist 0 Comments



My dream to have a small house  near the sea won't come true.
I don't have the money, as simple as that.
Buying one is out of the question, and renting one is impossible. It's more expensive that the normal house we live in now.

But I wondered if it would be possible to share a house with friends.

The idea started in my mind when I saw a photo of a friend and his wife celebrating yet another vacation at sea.
One of the children saw the photo and said that she wanted to go to sea the next week.

Two months ago I've been at sea with another friend, and all I can say is that I want to stay there....always.

And suddenly the idea was born: why not share a holiday house?

One of them can buy the house as an investment. I can live there, and when they want to spend a week there I can visit one or more of the children. That way the house is always cared for and always used. I can pay rent, and when others use it as a friend's bed and breakfast their money goes to the owner too.

Or we start a foundation that buys the house.
I think we'll find a way to run the hole business.

When we buy a small house, we can buy a house outside the touristic area, which means it can be occupied all year.

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0 comments:

And now.....wait

7/14/2017 Syl's bucketlist 0 Comments



So our family doctor considered taking care of the kidney problems a matter of urgency.
But the hospital?

As far as I can see in the system it'll take 17 days before an appointment.
17 days!!!!

When waiting to be seen by the cardiologist the waiting time would have resulted in death wouldn't I not have been in hospital. I was lucky then.

And now?

To prevent problems I skipped part of my medication.
The cardiologist told me not to do so. Last time he told me I was irresponsible, but I had to take action because I knew I couldn't reach the hospital for proper care.
This time I mailed my cardiology nurse. I guess she's on vacation, because I didn't get a response. But it's equally possible she ha informed him and he didn't reply.

I skipped the medication I thought would be available in the body now it's not cleared by the kidneys. My bloodpressure was still rather low, so no harm done.
If the kidneys had caused high blood pressure I wouldn't have taken the risk.

I also skipped the vitamins I have to use for a metabolic disease (I can do without them for a day) and those I'm taking against existing deficiency. (The deficiency has been worse anyway.), skipped all salt and protein in my food, and drank only water.

During the day my brainfog cleared a bit, which seemed to be positive.
Only late in the evening the blood pressure started to rise a bit. So maybe that means some of the medication or its associated toxins are less burdening the body, and I need to restart medication?

Being on a waitinglist is being between doctors.
The urgency my own doctor experienced and which resulted in swift action, seems to be a thing of the past.
It's like none is bothered, but a few caring friends.
It's like reaching out from the water, but none on firm ground sees my hand.
When they bother it might be too late.
Or maybe we've bothered too much and all has normalized by the time a nephrologist sees me. And which kidneydoctor will I get?
And do I need to stay in hospital?
Do I need to make a choice for dialysis and other treatment options?

Will I be lucky and escape all problems?

Far more questions arise than I have answers.

We'll see.








0 comments:

My first reaction to CKD4

7/13/2017 Syl's bucketlist 0 Comments



When my doc contacted me with the blood results I wasn't surprised.
All the symptoms already made me think about kidney problems, but I didn't expect it to be as serious as the blood results suggest.

I was surprised my doc didn't wait until the next day to contact the hospital. Within an hour I got confirmation that they had received his mail and I got a registration number.

I'm still feeling disbelief, the alienation of a huge shock. Part because I thought to have enough time to make decisions. But when I draw the line of deterioration I'll be on dialysis within a few months. So I have to turn the odds.
But how?

A diet? I already have many restrictions: salt, sugar, proteins, and I'm allergic to some vegetables.
I also try to drink between 1,5 and 2 liters a day.
So what's next?

The only option I see to change risk is adjusting my heartmedication.
It's like what I told my present cardiologist: It's about balance. When my heart is rotten, I won't get a kidney transplant or dialysis, when my kidney is rotten my heart will suffer and I certainly won't get any advanced therapy.
So he saved my heart and destroyed my kidneys.

And that makes me soooo mad!
Because I warned him over and over again and he just didn't listen.
He just didn't care at all. Why? His ego? Old age? Is he a routine monster and doesn't think about the consequences of his prescriptions?

My first cardiologist saved my life and really cared about me.
This guy didn't even bother to read the files. I had to tell him my heart was overall dilated, not only at the left, and that all valves were leaking. he was using my echo-movie at an information afternoon in the hospital, but I doubt if he knew it was, or he didn't care, assuming I wouldn't notice.
When I had one of the most important echo's he didn't even bother to have a good look at the results, let alone show the images or the movie.. he closed the files and said the echo was 'good'. And when I ridiculed that in that case I could throw my medication away he had the fright of his life. LOL! Then he explained he meant 'no deterioration'.
Well, it's not good now.
So I've mailed my cardiology nurse and told her to look at the blood results. She'll know what to do. :) Wish I could see her face when confronting him. But maybe he won't bother. It's kidneys.
Or maybe he calls me tomorrow... he loves to call his patients. Well I hate callers who don't show their numbers.

I wonder what's next.
Will I be lucky and will things improve? I've decided to skip part of my nighttime medication, the part which includes some heart medication and vitamins. My priority lies in improving the kidney function, not in treating vitamin deficiencies caused by other pills.

But the exception is vitamin D.
The kidney transforms inactive vitamin D in an active form that is necessary to get firm bones. The lack of vitamin D has a huge influence on calcium and phosphate in the body. But even worse. Research of my own university has shown that a vitamin D deficiency leads to kidney damage.
Well, I'm trying to treat a deficiency....

My thoughts are going from the past to the future.

I described to the doctor of internal medicine certain symptoms that are kidney related. He didn't measure kidney function but said I had no underlying disease. Suggesting a between-the-ears-syndrome. He didn't only miss certain vitamin deficiencies, he missed the kidney-connection, while gazing into the beautiful eyes of his female assistant.

Is the yawning a kidney symptom too?

I'm studying palliative care. Am I now one of the people receiving it? The bad tricks of life?

This is so not good.....










0 comments:

Bad news: Stage 4 Chronic Kidney Disease

7/12/2017 Syl's bucketlist 1 Comments



This morning I felt horrible. I could hardly move around. I was dizzy, my muscles were very weak, there was some dull headache, brainfog,and a lot more was wrong.
My blood pressure was OK, heart rate slightly higher than usual, and the saturation was changing from 94 to 98% and back.
Reviewing everything I expected the problems due to the kidney insufficiency

I always had good kidneys until I started to experience the effects of the heart medication. Maybe by that time the consequences of the heartfailure on my kidneys became apparent, and the nefrotoxic effects of the medication were just building upon it.

Gradually my kidneys became worse, and I wondered if I was suffering from kidney insufficiency. The cardiologist told me I shouldn't worry. It was normal to have some diminished kidney function.
I didn't believe him. Certainly not after I saw a cyst in one of the kidneys, during some routine echo. The man doing the examination said I'd seen it right and suggested that with all the cysts that had been discovered before: ovarium, liver, lungs I might suffer from LAM, but it was ignored by the other doctors.

My own family doctor was willing to keep a close look on my kidneys and after a while agreed something was wrong. He consulted a nephrologist again (another one had said the lower kidneyfunction was due to the hot weather) and this one said that reviewing all the data made her draw the conclusion I had kidney insufficiency already during 3 years. (Still then the cardiologist wouldn't believe it.)

Often I asked for a change of heart medication, but the answer was always 'no'.

Yesterday I went to hospital to get bloodwork done. The physician's assistant filled in the form with quite some tests, yet I wanted her to add kidney- and liver function, and later added a urine test myself.
Good decision.

Already today my doc contacted me to tell me he was very worried about the new results. Kidney function had deteriorated tremendously to eGFR 24/25, which mean stage 4 (out of 5) of Chronic Kidney Disease. It's called pre-dialysis stage here. So not even an hour later he had referred me to the nephrologist

I don't know what's going to happen, but I hope a good review of my medication. I informed my cardiology nurse and told her I wouldn't mind a stay in hospital to get a medication review.

Now I have to wait.



To comment, scroll down.

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1 comments:

40. Be a cliniclown

7/10/2017 Syl's bucketlist 0 Comments



Not many people know, but I would love to be a cliniclown.

A cliniclown is a lovely, funny, cheerfully dressed person who visits ill children and sometimes grown ups in hospital or old people's home.

I know it isn't easy, but I've always thought I could do it.

The first time I experienced a cliniclown myself was when a few of them visited the children's ward when I was there.
My son was in surgery and I was waiting for him.The surgery lasted far longer than expected.

Suddenly they were there, paying attention to the children, making them laugh, making them sing.
Then one of them turned to me. I never had expected I would be part of it all too. My mind was with my son, even though I was moved by the way one of the female clowns was dealing with a toddler.

All the children received a bear and then I got one too. I have to say, they gave me one for my son and one for me. To care for my heart, the clown gestured.
I vaguely recognized him, but it's 20 years ago and I still don't know who that clown was.
But importance of the feeling of being cared for, of getting some undivided attention during such a stressful time, has never left me. (Nor has the bear. :) )

It would be a privilege to visit wards with the team cliniclowns.
Or create my own team.

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0 comments:

My road

7/06/2017 Syl's bucketlist 0 Comments



The other day i was talking with a friend and she said, when she heard that I was volunteering, while I in fact needed to take some rest: 'Hun, which road are you taking?'

It made me think of a poem that was taught at school. I loved it so much, that I had it printed and put it on my desk.
My gram and I often talked about traveling through life, that we have to take our own road and not do what others do.
It has been my inspiration through life. Made me realize I have to stay the person I m, and stay true to myself.

It's the poem of Robert Frost.


The Road Not Taken 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

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0 comments:

39. A caregiver's house

7/04/2017 Syl's bucketlist 0 Comments



The past years the care for people has moved from professionals to family, or better said; from educated and paid, to uneducated and non-paid.

The influence on me and my family is tremendous.

The oldest went from living in a house with professional care (office within the house), to living in his own apartment without any care at all.

The second son was living in his own apartment, rented from a care-organisation, with 24 hours service from professional caretakers, who had their office in the apartment building.
He suddenly was moved in the administration of a formal renting organisation, and the care was stopped completely. (The young women kept contact for a year, but it was their own initiative.)

My classic autistic son was moved from 24/7 fulltime care in the house with semi-therapeutic care, to his own apartment in the building of the organisation where the professional caretakers have their office and see him a few times a week. Financial care stopped completely so he's terribly in debt.

And I was supposed to get help in the house after I returned from hospital with severe heart failure, and got no help at all.

Society in many western countries has changed a lot.
People have to take care of themselves and families are forced to become caregivers, whether they're able or not.

I could hardly move around when I came from hospital, but it was expected I could step in the shoes of those professionals without any education or information. Waiting were those boys, a daughter with muscle disease, another son with ADHD and autism, and a husband with dementia.

The idea grew of a caregiver's house.
A large house in town which is for the support of caregivers.
It contains a library about caregiving.
A small restaurant so people can relax with a cuppa or walk in to get a simple dinner with the family.
It has rooms for consultations with doctors, psychologists, psychiatrists, social workers and for group work.
Annd  large room for meetings, and lessons.
It has a few apartments for families with 24/7 therapeutic assistance, so families can stay together and can be assisted during mayor changes in life or when they can't stay at home.
Etc.

The building could be funded by crowdfunding, the running with assistance of gifts, donations and subsidies by the health insurance companies.

I've submitted the idea to a contest to improve our town.
The idea was welcomed, but I didn't win, because I had no financial back up.

Maybe... in the future....

0 comments:

I hate my medication

7/03/2017 Syl's bucketlist 0 Comments



When my heart gave up, I was turned into a pill eating machine.

I know these clusters of chemicals keep me alive, but that doesn't mean I love them for it. Not at all.

They take a lot of my time and attention.
4 times a day I have to remember to take them, if I want or not, regardless of the place or situation. I've learned to take them with a piece of bread or something like that, because water is not always available.

It's not possible to take all boxes and pots with me, so I have to fill special boxes.
Some pills are very tiny, so it's a problem to get them out of the blisters.
Others stink when the blisters are opened.
Some boxes and pills look the same, so I have to be careful not to make a mistake. A while ago I put vitamin D in the box instead of heartpills. I discovered it, because I started to feel very unwell. And counting both kinds confirmed my suspicion.
At times boxes are completely changed and sometimes also the size and colour of the pills. So I can't rely on experience. It's reading and checking all the time.
It takes me over 90 minutes to get things sorted for a month.

The pile of junk that is left bothers me too.
The blisters are made of plastic and aluminium, the boxes of paper, and some pots are plastic too.
I have to pay to dispose of them.
Re-using is not an official option, but I often ask the kindergarten nearby if they want to have the pots and/or boxes. A few times a year they like to have the pots. They use them to put seeds of watercress in them, so the children can take the seeds home and grow watercress at home.
The boxes are used for crafts. They're painted, or they glue things on them, build things.
The blisters can be used to make bowls for the dollhouse 1:12. But a house only needs a few bowls.
So what's left goes in the bin.
I'd rather have my pills in pots that can be refilled. It saves time, and a lot of junk.

Taking pills is not a matter of following the doctor's wishes.
The pharmacy is supposed to control for unwanted interactions. I've never had a warning. They trust the cardiologist, and he doesn't check anything. As king of his profession he wants everyone to do what he wants; he thinks he's right.
So:
  • as a diabetic I get pills from him that interfere with blood glucose levels. 
  • I'm allergic to lactose, but I get pills with lactose.
  • I've got asthma, but I get pills I'm not supposed to take, because they enhance asthma..
  • I get pills with positive interactions, meaning they enhance the activity of one or both of them
  • I get pills with negative interactions, meaning they diminish the activity of one or both of them
  • I suffer from kidney-insufficiency (thanks to him), but I get more nefrotoxic medication
  • I get so many pills that even the additives add up and lead to side-effects.
There are so many issues, that I can't get a good insight anymore.
Some pills mask vitamin and mineral deficiencies, some pills cause them.
Some pills need a distance of two hours from each other, others need a 9 hour interval.
Some pills need to be taken with something fat, others absolutely not.
Some can't be taken with grapefruit. When you think that's not a problem as I don't like grapefruit... be aware that some jams, sweets and drinks contain grapefruit too, and it's not mentioned on the product.

And the cost of the fun to stay alive?
I pay for insurance, but before the insurance pays I have to pay 385 euro first, called 'own risk'. That means that in January I have to pay 535 euro for health insurance. (And those members of my family who use medication too. The pension is 1650 euro, and we're here with 3 medication taking people... so use your mathematical skills. Next year they want to raise the 'own risk' to 500 euro. Is it strange to think I won't be able to pay? (Rent is 754 euro)

But hej..that's not all.
Some pills need an extra payment per pill. I don't know why the government thinks this is fair.

And not all medication is covered by the insurance.
Metformin causes a B12 deficiency... because I get shots the insurance covers the problem.
But I also need Pyridoxine and folic acid, because of a metabolic disorder. I've got a Vitamin D deficiency, and a magnesium deficiency.
Since my heart almost caused a complete body shutdown, the metabolic uptake is insufficient.
So the doctor diagnoses, and I pay for what I need.
Leading to saving money on food and drinks....

And about theside-effects of the medication? That's for another blogpost.






0 comments:

38. Singing jazz

7/02/2017 Syl's bucketlist 0 Comments



It was such a privilege to live in the same city as one of the most famous singers of the world, a civil rights activist, a woman with so many thoughts and feelings that she could understand the young woman I was.

When I told my gram I'd discovered Nina Simone lived in our city, she smiled and told me to go and talk to her. 'Maybe she's lonely as the only black woman here.', she said. 'You're one of the few here who speaks her language fluently, and people always appreciate to be able to speak in their own language when they are abroad.'
I didn't understand what a white, very white student could do to end the loneliness of such an famous person, but maybe she wanted to drink a cup of coffee with me and talk a bit.

That evening I saw her at a concert, hidden in the shadow, listening to the band.
I didn't think, but just went to her and asked her if she liked to drink a cuppa with me the next day. To my surprise she said 'yes'.
It was the beginning of a short friendship.

She taught me a lot. About the human psyche, about racial differences, and about music.

My voice was light and clear at the time. I tried to sing some jazz, but it sounded strange with such an innocent voice. We had a good laugh about it. She liked my timing, the improvisations, and she said I should be older before I could really sing it properly.
So I've always said: 'When I'm 50, I'll sing jazz.'

I did, in the silence of my home, as a tribute to Nina.
But I would love to have some good lessons.

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0 comments:

Like he had to reinvent the world

7/02/2017 Syl's bucketlist 0 Comments


Understanding a bit of dementia



It's half a year now, since he left the house, and I'm still dealing with the peculiarities of his dementia.

The 115 pairs of new socks have found a place, the enormous piles of blouses too. But I'm still dealing with the chaos he's created in the world of money.

I tried to be polite and kind when stopping memberships he didn't need anymore.
I've got plenty of bills over the past months of memberships he's told me he's stopped.
I tied to explain the situation and most of them expressed understanding, stopped the whole lot and that was it.
In fact only the workers union has no consideration at all. Can you believe it? They are there for the wellbeing of people, and they care for nothing at all. I don't have the money to pay them, as simple as that, but they want payment, even though they delivered nothing, no service, no magazine, nothing.

Then today I suddenly realized why they all complained the automatic payments were returned by the bank, even though I didn't do anything.
I think he has withdrawn the permission for automatic payment with the thought that they would understand membership has ended.

I know it doesn't work that way, but he didn't.

Dementia is a process which is very individual.
We're here with a nursing-student and a psychologist, so we saw the process grasping him.
The forgetfulness, the loss of decorum, the mood swings, the repeats.
He thought the world turned around him. Created rules in his head and expected us to act on them, even when we didn't know those rules.
Sometimes it was possible to talk with him about that and his reaction would be: 'It's a better way of dealing with things.' Like he had to reinvent the world.

But he had.... he had to reinvent his world, because he didn't understand the rules anymore. Partly because he'd forgotten them, and partly because he couldn't control them.

So let's see if cleaning the chaos is a bit easier knowing this.


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0 comments:

37. B&B with an amazing garden

7/01/2017 Syl's bucketlist 0 Comments

I so crave for a vacation that I nibble days and distances from my wishes.
No 10 days in Nepal, or in New Zealand in a posh hotel, but a few nights in a B&B, not too far from home to save travelcosts.
Just to get some relaxation, a different environment, and a few hours of undisturbed writing.

I pushed the idea away. Why bother and spend so much money.

Until I saw a B&B that completely blew me away.

The rooms are very nice, and I think the stay will be great.
But with the B&B comes a huge fantasy garden. It's so very beautiful, one wants to live there all year. The care with which it's kept is motivated by pure love for gardening.

Wouldn't it be nice to spend some time there?

Click here to see the garden.







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