Friday, June 1, 2012

Ireland will let us die

without a doubt my country will let us die...i speak of my identical twin and myself - two women with a rare condition - Congenital Rubella Syndrome.
Dr. Raging Wheels is my twin.  You will get to know her too - if either of us remain alive in a health system that is simply euthanizing the useless, aka the disabled.
My twin and i - for instance.

We reel from one crisis to another.
we live but a quarter of a mile from each other or less and we cannot even get to each other easily.
we are promised electric wheelchairs which we have tried out.
like carrots teasingly tempting us to sit, we then see em packed away in the white van that brought them to our doors, we now wait on a list.

and so it is with most things.
we reek with conditions, as each of our body parts crumbles due to an invasive virus Rubella which my mum caught when expecting us.
we have not hit 60yrs but I bettya Ireland is sure we wont.
We dont have the wheelchairs but what else do we not have?
we do not have CARE, period.
Little or none and what there is is chaotic, unpredictable and predictably AWFUL.
what is left at 'fallout' end is two exhausted women shocked to the core that any european nation could do this.
Most people in this society rely heavily on the extended family - what if there isnt one, or one that can be or is willing to be caring or even recognise our distress, what then in holy ireland?
if we do not have this extended family we are finally in the custody of the state, which is bankrupt.
Neurology for instance, has cover the lowest in europe.
and my twin and i do not even register on the richter scale even though we are supposedly being cared for in this system.
we have not been jotted or noted in our chart for two full years, that is, no note has been made of us being in that system and yet we have and yet we see and dont see a result.
we see the consultant on no set regular expected consult, we have to hope and wait, and wait and wait that someday it will be decided for us to be seen.
we also do not even know what we have, for the jury is out on us it  as no formal diagnosis has been made, again, nothing has been formally documented-nothing being written in our notes.
if we ask, we are considered pesky and persistent and irritants.
We do not easily slot into Post-polio, dystonia, parkinson's, ms or als.  we have some and not the other and none of them but all of them, whatever.
we are dystonic and parki and have a post rubella.
but what is the definitive diagnosis and how are we to be cared for with it?
does one of the twin's come off her parkinson's meds and why is the other hardly been medically controlled of her jigs jerks and dystonia.
we get the botox jab in my neck and twins foot/ankle but is that dystonia due to dystonia or parkinson's.
we both tested positive for parkinson's on a DAT scan which is considered 97/% accurate.
we don't get considered as having it and half the jury is hung or out and we are slashed and drawn in confusion and dispair.
what about the other...the endo who discharged one back to gp, that is the senior reg discharged the twin without even consulting the professor of neurology who referred her to him.
that is 'out on your ear, mate,' without further ado.
 that is, us being sent to the consultant of endocrinology,  (we haven't seen though, due to the rarity of the situation), sent for the expert opinion but in the opinion of the registrar, not yet a consultant one twin has been  shifted back to sender.
Deformed feet with special shoes, well yes, but two years ago funding dried up for them and so i hobble, now one foot has collapsed and i am working with fallen bones.  I also have a short leg but as the shoes went so did the lift, that is all of two years ago.
what about physio, well, yes, i get four blasts every six months.
that is my friends, about half hour at most working on generalised dystonia and then after two hours every six months i am told to get on with it.
any expert nurses around for the following - ceoliac, crohns, sjogrens, raynauds or arthritis?
no, you join these sort of support groups for the support grouppie advice.
that is the sjogrens associations, the raynauds etc.
these are non medical conglomerations of well meaning and charitable organizations who do trojan work, but they cannot interfere with the medical supervision of the various conditions they are trying to support.
we don't have the medical supervision and we have all of these, well i do anyway!
you can get all the advice in hell on these but you need to have the provision, advice without such is useless.
how about deafness and blindness - well none of that is much public health concerned as the public health hearing aids are just about useless for those of us who are touching on only having 35%.
we have a shortage of just about everything.
and just about everything my twin and i have with just about nothing by way of care, family, support, apparatus, funding and access to transport or other.
We will die.
I personally who had the misfortune to be in the psychiatric system will surely die, as i am shunted to the virtual wards as soon as i arrive in A"E anyway.  that is ED to a lot of countries, but here in Ireland these are documented to be seriously dangerous for your health and fatal for psychiatric patients, known to be.
without family to watch over you, no one can call a halt to maladministration of health care for the least able.
how can one person with parkinson's disease who is recovering from radiotherapy help the other who has generalized dystonia once in the psych system who ends in A'E/ED with a crohns blockage, both deaf, both women, both in wheelchairs, both clapped out help one from dying of crohns blockage/peritinitus?  well, we lost one sod in southern ireland whom they left too long and who died, sure i am surely going to be next as he was abled bodied and had two small chizlers, whom he left behind.
we are forgotten in the melee.
who do we want to hear this?
well who will hear?
and who will cry out and not allow Ann and Margaret, the terrible twins to suffer this indignity at the age of only 57yrs.
it is no good making documentaries on a wonderful woman who pulled out all the stops for the atrocious treatment of learning disabled in the west, when now, she is receiving pretty similar and more and more, and watching the same happen her twin, myself.
it is no good plastering my cute wee chihauhuas and self on the front of HealthPlus Irish times, 2010, documenting my story for the curiosity of it all and then abandon lock, stock and barrel, the three day wonder.
and then the bit of curious floss dragged in to the bosom of a caring professional because of curiosity and then told 'ah but you are a spirited lass.' but what next, 'get back to where you belong.'
and soon it will be to Holy Ireland of the dreadful bloody fiscal fiasco who will carve our graves with enthusiasm as they embrace the words of my taoiseach who states 'we are a modern society.' he that says he isn't tolerating what the church has done to its children and vulnerable adults.
well you did, over in the West, remember, and someone found you out, that of the HSE, remember and then remember how you embraced through tv documentaries and Irish Times articles, well no you don't.
cos we are still here, but not the way you think, we are here, jerking and jigging and hospital hopping and chaotic crisis riddled individuals, left in the melee of Holy Ireland and modern etc.
well we are here,
if you read this and care enough to give us your last rolo, as in - DO NOT STAND BY AND LET RARE AND SPIRITED AND WORTHY INDIVIDUALS DIE IN A COUNTRY THAT HAS NEGLECTED US.