Friday, February 23, 2018

My biodegradable brain - definitive diagnosis!

Achievement gave me a new way of dealing with disease and it meant ‘escape routes.’
chucked with no neurological care after being to centres of excellence abroad as a rare diseases patient - Ireland has reframed me as not worthy of either diagnosis, care, treatment - basically sent home to die

fighting a medical model of tyranny of the person is a tough road, my aim is to meet the beauty at its end

These escape routes were to be come increasingly valuable as I stumbled along a healthcare system which seemed designed to test both my endurance, capacity to fight and capacity to remain calm.

My ability to stay calm is not one of my enduring features.
Calmness is a pre-requisite for my wellbeing, noted as being an essential ingredient in any way I chose to live.  I needed this calm.

I now was in new territory becoming increasingly alarmed.
I was in this territory alone, with no supports to counter face this.
I had transitioned once more from normality to completely abnormal ways forced upon me in an abnormal fashion because I was catapulted into a system of powerful consultants and I was not going to be able to manage any of this.

I left the consultant who labeled me as ‘wanting Parkinson’s Disease’.
I did the right thing, no one would stay with such a slur or abuse of language or insinuation to a person who is honorable and kind and could not cope with such spiteful remarks.

Walking away I felt I would get the right consultant next time.
I chose another hospital.  I chose to trust again.
My first visit was made with the support of my identical twin sister.
Oddly, the consultant was more enthusiastic about requesting some paintings from me for his bare walls once he heard my ‘occupation.’
Alas, he didn’t suffer Abstract Art well, so it looked like he was not going to get anything even if offered.  I do not do pretty landscapes.
He was a disappointed man.
Soon after another visit was made and a test requested by this consultant’s registrar for Huntingtons Chorea was put to me.
This condition would be my death sentence, if positive. 
You  gradually develop towards dementia and full incapacity.
I consented to be tested.
Learning years later having this test you must be in counseling and be genetically counseled in order to prepare for the outcomes of this because of its very poor prognosis.
I wasn’t.
I waited and nothing was forthcoming.

I continually rang the nurse, continually rang the department but nothing further was mentioned of this test once the blood had been drawn.
I was sent to the psychiatrist within the hospital.

These notes are embedded in this hospital file and are shocking as some kind of construct was woven around the organic process of a slowly forming atrophy/dementia type condition.
Given this was in 2009 and I still remain with full capacity, the slowly forming progressive brain disease never happened.  We are in 2018.

Further inquiry through FOI in 2018 found that a recent visit to this hospital and another consultant saw him extract the psychiatric reporting of that time, 2009 and pin it all on the blood results he had performed in 2016. 

He advised me to go home and enjoy what was left of my life.
I have to ask many questions here as my brain goes into a spin of intrigue and confusion (not from dementia I hasten to add)!

A signature was being given to my case.  I was being framed.
This isn’t TV entertainment.  This is Irish medicine at its worst.
It certainly, to me, sounded alarm bells within and fully confirmed my suspicion of their intent against me a very sick individual.

Any way you look at neurology here and my case you see a construct forming.

Within the space of two years at this hospital no tests were ever done to determine why I had a movement disorder, muscle wasting and a mixed connective tissue disease.  

There appeared no interest and no further investigations were ever done.  We did have of course the psychiatric consultants ‘stitch’ me to the tapestry with lack of personal consent by this patient to be labeled the way she has been which is untrue.

In brilliant academic language I was in their words just a woman with a progressive organic type of brain degeneration and a personality reflecting this organic degeneration.
The book was effectively closed by consultant psychiatrists.’  

No further inquiry made on Neurology.  It did not matter that one of these professionals I never got to meet!
Whatever happened the blood tests for Huntington’s Chorea you may ask?
There is considerable complexity in my personal understanding of this.
It was never done.
It is and remains as simple as that.

It was sent to the The Genetics Department of a major hospital.  It was found to have incorrect labelling and this was claimed by the hospital as ‘human error.’

We can all fully accept human error.

I cannot accept what happened next.
 Genetics were informed that I had been discharged, the bloods were taken by a different team and they had no idea where the doctor was who took the bloods. (2007)

This is not true.

I remained under the care of the same neurology team at this hospital for a further two years and was then discharged.

I threw what is eupanistically called ‘a wobbler.’

In the presence of a supporter who came with me to try and extract the test results from this team, I was not being told and I lost the preverbial plot.

I was discharged due to the atrocious abusive manner in which I dealt with the staff on that day.

Looking back I see this an entirely different way.  To struggle for two years in effective communication through the normalized channels of contacting by phone and engaging in the clinic on ‘where is the genetic test results?’ for Huntington’s chorea’ being met with a file never opened is testament to how I tried to engage.

If as above, the files contained the psychiatric reports of confirmation that I was going through an organic brain, progressive disease leading to a demented state then no file would be opened thereafter.  

Of this condition, i wasn't informed of either, which is odd because i was the patient.  Who is this very disease discription actually for, if not for the patient herself?

But witness to the fact recently with a mighty chuckle to all of this my GP tried to contain herself from laughing. 

“You have not got dementia!’  (ten years later)!
“No,” I laugh back “I do not”

Within a year my dear mother on developing dementia, was feeding teddy bears.

I continue to feed myself, my sister, creatively.
I feed my van petrol and I can drive to Athlone and further and can manage money (what’s left of it).
The astonishing findings on this file, is enough to rocket any sane individual into a seething mass of fury, but alas although I see it now and it can all be discounted – we live in Ireland.

A consultant running through these very inaccurate files, extracting physically data dating from 2009, (out of date data) and pinning it to the collar of his recent blood reports is shocking in extreme, occurring in 2016 and I have received no further help from him or his team.

The suggestion to go home and ‘enjoy what is left to me.’ Seems now  ‘staple medication’ and cheap.
Its cheap to scapegoat patients who are considered very rare and complex in this manner.

Labelling is never good, but this is at the extreme end of utterly atrocious.
Extremes exist and difference does exists.
When differences of opinion and fabrication occurs the patient must stand up and call it, name it as it is.
We have here a case of “the emperor is wearing no clothes.”
This well known fable from a different time and era attests to the fact that Asperger Syndrome was alive and well in that kingdom too.

Bluntly put this little child of observation squarely claimed a case of fabrication, denuding of a patient to a state of vulnerability and wrongful diagnosis is medical negligence, a crime against the hypocratic oath and a denial of duty of care.
So says this lady delving into the intriguing world of semantics, power, and uncredible diagnostics spheres of Irish consultant disciplines.

Two or three major medical trips abroad to centres of excellence tell a very different story and in a very different way with a very different emphasis on the physical decline alone.  Nothing further needs to be looked at.
London 2016 - visit to see consultants inform us they consider we have a muscle wasting disease and more tests need to be done - to date they have not - they, instead (in Ireland) both have a different way to care for us than that of the UK, it is called 'go home and die.'
When an eminent CEO tells me or inquires of me

 “do you realize that the Irish Consultants have a different view on how to care for you than the UK consultants.”  

I instantly say back, I am fully aware of the Irish ‘take’ on all of this.
“go home and die.” is their wish of myself and my twin sister.

It takes into account no consideration of eminent consultants at the cutting end of ground breaking science and research and at the forefront of managing disease complexities, to that of an Irish setting where consultants are struggling to keep up with its clients on a basis of even managing at all, anything in fact.

When a patient receives a neurology appointment in 2016 for 2024 as a first appointment you begin to see where ‘flushing out’ such patients as my twin and I as a viable way of getting patients lost from the system easily to cather for ‘the real ones.’

The UK see it all differently.
We are the REAL ones.

They may have over 58 million citizens to deal with, but with limited means and time they dealt with us in an exemplary fashion. Detailing our case as vary rare and complex cuts no ice whatsoever once you return to Irish soil.

They instantly revert to the lunacy of us and our case and I call it lunacy of Irish medicine to discount a far superior view and place us in a nomads land of complete and utter ‘entrapment.’

We have a power base willing and able to imprison us in such a way that we are powerless to effect meaningful change in any shape or form.

The construct has been established, I am a person biodegrading like washing power into nothing therefore go home and die.

This isn’t the case of solidness and soundness of mind, belief, my wishes and that of superior medical resources.
The different way of treating us and caring for us is not our wish.
We have not agreed to be sent home to die and be left to die.

This is the meaning of power.
It is degrading to label a patient forever in a vice of misuse of both disciplines and expertise.
Uk determined many things and discounted a lot including issues around my frontal lobe atrophy. This being the brain problem that got rocketed into a mass of washing up powder, by the shrinks here.

When considering this brain atrophy it is minimal they claim.
It has caused no pathogenic effect and I am not suffering dementia or nowhere near it.

I have not got a pathogenic type organic progressive brain issue and the atrophy most likely was there since birth and is not going away but likely not going to get worse, beside its not that BAD!
Its only minimally worse than normal and it has not changed over decades.

We still cannot put to bed the theory of the washing up biodegradable brain matter.

We cannot bring back a fact the brain is not going jelly like and I am still sick from a disease no one here is bothering to investigate.

is this an image of a demented woman (2017) absorbing the essence of the scenery and taking professional photographic shots? when Ireland refuses to treat me, they allow me intellectually know degrading in body without even knowing why is a breach of my fundamental rights to both a diagnosis and to care in the European context of holistic medical input -since 2015 i have had NO medical care. Those who use wheelchairs can rise out of them, 80% can walk, i have a very strange disease type, i can walk for short periods, but mostly outdoors i am in a wheelchair.  (you constantly have to explain)
It is keeping twins trapped alone against our wishes with powerful men, usually men, claiming that is all that should happen.

We say its not all that should happen.

I claim its gross negligence and it is prejudicial against us.

Friday, February 16, 2018

it has been obscene and torturous ten years

i was about to lose my county, my financial stability, my everything.
'Brokeness' caused by actual Healthcare services is not a position that any healthcare provider should be proud of.
i was pretty much 'nobody' to ALL.

a girl with a gun was the final straw.
Being shot at is very threatening to a vulnerable person
helping me escape when no one cared was my twin who took even bricks out to save me money i did not have and here we flee our county after i was shot at.  Four years of consistent hell i had endured.
state property i was put in but no state help when it was an ugly scene of terror for a very unwell woman placed badly in with alcoholics
2010 a tiny home for twin sister Margaret was sold, two women in wheelchairs packed this house up, gritted the bottom of the slope for the removal van to enter a cul de sac.  this should never have been allowed happen. (one up/one down, that all it was)
'Brokeness' means that hurt has occurred and a life has been shattered into tiny pieces, not only a life but a soul and part of their whole raison d'etre has been twarted, disrupted, brutally crushed and smashed into broken bits.
such trauma, such exhaustion, such pain

When this happens it can cause lasting harm, enduring hardship and traumatic reliving of past events which can become a person's whole focus. Rather than focusing on a 'goodness' as opposed to 'obsessing' brokedness and how or why it occurred in the first place, causes indivuduals agonising sleepless nights and a sense that they can never find a way through the injustice of it all.

Vulnerable individuals are born but also created.  Once vulnerable usually, always vulnerable.
its a hard concept to grasp that even the outward appearance of strength, articulation and intellectual prowess can mask such a vulnerable individual.
a strength of one with a vulnerability is actually to mask well their own vulnerability through their personal anxiety over it, their fears about it, and the pain of it.

We all know the theory of those who show undue annoyance, who voice a lot and do a lot in time of injustice do so because they feel it so intently that it hurts, this is a mask of personal vulnerability.

i have witnessed the slow erosion of personal confidence bringing about a brokeness of soul, spirit, purpose, love of life and love itself.
i have seen it sap an individual of wellbeing and become stunned into a mute silence of unrelenting despair.

This has happened my twin sister and myself.

I feel what has happened us has literally been 'watched' by society who failed to act on two women being slowly destroyed for no real good reason but bloody mindedness and obstenancy.
It has been callous and cold,unrelenting, unforgiving and a torturous ten years for us both.

we should not have to continue in this way for the remainder of our days.

my twin came home a really happy person, full of expectancy and joy to be around her family and her twin sister and her attempts brutally dashed almost immediately.  She tried to begin retirement, write and document her experiences which were good and successful and this now had been smashed asunder when a newly done up home had to be sold to get her twin out of a social housing unit from hell.

ten years done the road, both sisters feel unsettled and in despair.
both twins are caught up in a relentless bind of a fight for the rights to be treated well or better or fairly.
there isnt a way that any one can contemplate twins with a severe progressive neurodegenerative disease should have to live,in any civilised society.
such trauma, such suffering and pervasive pain
it shows, underneath these smiles is real suffering and undeniable harm done to psyche and physical health - taken in 2017 seven years after the one directly above, it shows.
arguing the minutae, every day for ten years has been an appalling case of utter suffering.
even moving from trauma did not prevent more of the same, an utterly terrible time was ahead
it simply has been an arguement, drawn out for this long for care, for consideration and for the once revered and honoured christianity ireland professed to uphold, the decency of the human being towards their own fellow man.
the HSE demanded 'either or' the wheelchair or the scooter, both were banjaxed and barely operational, but this held sweet memories and joy for me, they took it.
Like all fantasies, we face shortly celibrating our unique Irishness on St. Patrick's day.
we celebrate this throughout the world, where we were scattered to the winds over decades of emigration and thus bringing green Eiffel towers, Green Niagra Falls, Green Big Ben and Green bridges, monuments, rivers, and clothes and Green will be celebrated all over by every country in the world.

yet in the small country where this all began there remains immense poverty of modernity especially within public sectors, especially within the way we value human life and can adjust all economic boundaries to do just that, value and respect human dignity.

our value of a human being is being eroded daily as we watch the divide grow between rich and poor, vulnerable and the ruling classes.
its a different world altogether, but i would have loved to be celebrating our unique ability to care over all other matters.
when they took the scooter, they took away my ability to offer relieve for an hour in an old persons home through 'irish therapy dogs.'  without the scooter i could not bring a bit of joy as i had done.

i would prefer to celebrate goodness, celebrate a sense of wonderful uniqueness that is truely unique, value of the citizens of the state.

meanwhile as i type my blog today i know and have seen silent suffering as twins sit together in a personal 'weep-in' unspoken, lacking tears,but pevasive in intense, solitary brokeness.

this has been caused, not by them, but others.
it can only be reversed by others and not by them.
For ten years the twins have attempted all things to accommodate hacking at their lives in such perverse ways, to alliviate pain they have been virtually useless.
we have failed to transport ourselves out of this intensity.
we hope and pray that such suffering will find an end soon.
give us our life back please, at 65 we need every minute possible.
in the beginning when my twin came home first we had hope of a happy time together - all dashed by the workings of the STATE.
we hope that decency will prevail.
we hope and pray that the state will sit up and answer a well worn prayer and a begging from our hearts to theirs, that we need them to uplift out of this to something akin to security, calmness, fun, joy, quality and care.
not in ireland

i cannot 'do this' any longer.
Nor can i watch it in another any longer.

i am utterly spent.
not in an irish hospital

In this blighted house: No-one will come

I wish to share this blog by my identical twin sister.

it screams the pain both are suffering.

in days to come i very well write my experience, which actually is a mirror image as placed here.

In this blighted house: No-one will come: Three days ago I had a very bad night. I got out of bed, with much difficulty. no help. I live alone. Single. No one to 'be' there f...

Monday, December 11, 2017

Healthcare in Ireland and no magic word 'enforcements'

Heaps can go very wrong in a country that doesn't want to understand.
i cannot deal with the HSE one minute longer
heaps does go wrong.
How can you explain in plain english how to do things well, sensitively and properly here anymore?
Who cares enough to hear them?

A judge making judgement on a very sad case of a rough sleeper probably said it as best anyone could really, he claimed before him was an example of how Ireland has lost the ability to care for its people.
believe me 'shit' happens in Ireland.  the country left me like this for two years before i managed to get out of the country for the help and diagnosis i needed to try repair this ailing body, all the Irish doctors could tell me was go home and take the 'anti-depressants'  thats the best this country can offer the physically sick and getting sicker
This is correct.
a judge has a person who had fallen on hard and bad times, sleeping rough and losing his parents, home and everything.  He said what he should have and more should too, ' a huge reminder that Ireland doesn't care anymore.

Another is around the idea and notion that those who are sick, disabled and elderly have no rights to decency, care, healthcare and a quality of life.
It's how Ireland doesn't care anymore.

When using any case as a 'case in point' there is no harm using your own for example. Many do this and its the start of a lot of blogging and new forums beginning and flourishing because a 'wake up call' has been sounded, but also because where do you go when the country doesn't care anymore.

We have a healthcare system.   They do not want to care.   They prefer to abandon the ship along with making amazingly reasonable claims how they can justify doing so.

if you do not challenge wrong doing for those least able, then how can uphold the belief to having a moral fibre within?
This country is a country  without any moral fibre left.

If you allow things to flow badly which brings immense hardship and suffering you are complicit in crimes against the people and the state inflicts harm on the people.
It's a crime to remain silent in the face of such terrible, terrible hardships.

Today i had a minister for health's secretary stating that i always ring up complaining.
i swiftly reminded her of my own case being upheld that complaining that no answers are forthcoming is not complaining and that i have aright to complain if they are not meeting the needs of very sick people.

ask anyone with a serious progressive neurodegenerative disease is it 'ok' to leave a woman with her bed like this for about a year?  is it 'ok' not to offer a decent surface to sleep on, when she cannot provide for herself, would any other country leave such a sick person in this manner and does any other state then tell the patient that the Healthcare provider is seeking funding from charity to get her a bed!
This right to contact your TD's and state the obvious is blurred by the healthcare provider being believed by our state own Department of Health.
Yet, i doubt the Department of Health is in a happy bed with the HSE at all, but do not show correct morality in this by supporting the patients, the sick, the dying and the disabled and elderly.

It's wrong for any one to be told by the state workers that you are complaining and always complaining.
you have a right to healthcare and if you do not get it, you complain.
The Law says you have no rights to healthcare, but the upholding of the fundamental rights to healthcare remains valid and enforceable.

you are not allowed damage a person by neglect, this is more to the point, damaging a person by not providing disease specific treatments, oversight by medical consultants is called neglect.  It is against the law to bring harm, do harm or ignore the sick and thus bring harm.

you complain about that.
how can anyone in their right mind be 'grateful' for such neglect leading to serious decline way over and above the disease process they have already.  this is the image of pure and intentional neglect and trauma caused by the state healthcare system.
i am not grateful for lack of care.
i cannot say i am grateful for ten years down the road in a fight for the care i need when those who can afford it here can pick up the phone and make the appointment, see the consultant, be treated well and get on with a quality of life which is respectful of the person's right to have that quality of life.

No one believes for a minute that those who have no healthcare  should also have no quality of life and die sooner than the rest, the wealthy.  This is what happens though, many cannot see this knock-on effect at all.
The distain towards the poor is unpresidented now in modern society.

Lord knows the world has never known anything other than members of the human race being disadvantaged, we have always had the poor on this planet, and it would be a bad world if they didn't exist, its right and good they do.  It brings out the best in the rest and it has proven to be so, without that feeling of goodness within and tapping into it, you cannot enjoy a quality of life.
part of making people feel good about living is also wrapped up in the ideal that in 'giving you recieve.'  a Known fact being, people who give, actually feel better than those who grab and take and steal.

Lacking the ability to see good in the poor from many angles is leading the world towards the ultimate extermination of those we do not seem to want - again.

Vowing we would never see another Hitler, every single modern state right now is under a far right agenda of kill the bastards, kill the jews, kill the blacks, kill the gay people and exterminate the defective and the muslim and arabs!  we do not have ONE hitler, each country has its own 'type' of it, own version and insidious and with one thing in mind.
We do not care a toss about each other - really.

Back to the basics of a small island nation, ireland.
Of the country i know best, its getting as bad as any other country, we held once a type of morality.  It was a form that we saw and underneath it was pretty terrible, with the magdelene laundries, the asylums  and the christian brothers and also the workhouses and mother and baby homes. we had a vicious society.
we seemingly cannot move away from such viciousness.

To have a minister's office staff tell me that despite what the constitution says about the rights to my  own home because I am not paying for the adaptation to it, the state forces can enforce you do things to it against your wishes.
Actually it can't.  The state still takes it upon itself to 'see no harm' in forcing its citizen into damaging and restructuring their home against their wishes as viable but its against the constitution!  Being made do something against your will, fact, its against the law.
because you are not paying for it you shut up and do as you are told.
That is the society we have formed.  The secretaries of Ministers today tell you this, i was told this.  i was told i should be grateful to the grant to adapt my home, which i was, but i also had to be grateful to having my home biffed to bits on the ordering of a healthcare official i never met.  Sorry mate, thats against the law!

There is nothing gracious or good about this.
The HSE have broken the law in my home, I know it and the state knows it.
The state also knows that you do not make such judgements as 'serial complainers' out of two very sick women who at the end of their life have had ten years whipped away from them because they are trying to get the care they need.
we still haven't got it.
It's against the law to neglect the health of the state's people.
That is the fundamental right of every citizen to be cherished as equal.

But because you are poor, you can have even the state labelling you 'serial complainers' you can have the state's minister for health secretary saying 'you always ring up here complaining.'

And I will say to the Minister himself, i will complain against the HSE injustice to leave us rot at home as they are doing, you can call me what you like, the whole of Ireland can call me what you wish.

I will say nobly and with truth, the state is killing me and the state doesn't care.
The HSE doesn't care and its our only healthcare provider. 
The state carries out its own extermination programme and we twins are on it.
we have no neurologist, no rheumatologist who deals with serious mixed connective tissue diseases and we have no consultant advised therapies, because we rely on the HSE to provide that and they do not.
That my friend is my complaint.