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

July 31, 2017 Syl 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?

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Passchendaele 2017

July 31, 2017 Syl 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

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So I try

July 29, 2017 Syl 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-

July 29, 2017 Syl 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.... :)

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...and I played calm.

July 27, 2017 Syl 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

July 27, 2017 Syl 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....

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45. Recite: 'We will remember them.'

July 26, 2017 Syl 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-

July 26, 2017 Syl 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

July 24, 2017 Syl 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.

July 23, 2017 Syl 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.

July 22, 2017 Syl 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.

.

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