Monday, February 6, 2012

congenital rubella syndrome and hardly a stat i can be included in!

Ok here goes, for all the Congenital rubella syndrome adults out there, and for my Linekin whatso, and all.
It hardly matters a jot that the WHO was impressed with my spirited article of 2010 and nearly, just shade it that a neurologist picked this article up in the Irish Times and decided to pull me in for a review and to just see what happens next.
I believe she still finds me spirited but at times tiresome.
Well you would be, i am in Ireland!
its tiring being in Ireland.
It is tiring being sick in Ireland and its tiring having a condition/syndrome that no one knows of and no one cares about.
This is also the same in America.
Look at CRS my friends, that is Congenital Rubella Syndrome, a set of severe reactions to being exposed to the virus German Measles, whilst still being formed in the womb.
That wont enlighhten anyone i guess.
I will try, my best.
Deafness and blindness in all its degrees of severity.
Autoimmune complexes and diseases in all their degrees and severity.
we then have the neurology and psychology and if you wish psychiatry but of the latter, that hardly comes in for they swipe everything they can.  (of you have a touch of depression, in all its degrees, be it a reaction to the reaction of being crs, next thing you find you are on the anti-psychotics for mental illness (we have a touch of depression, little 'd') and if you have a larger touch of depression as in big 'D' you are zapped, that is ECT.  Yep, pretty much.
so we shall leave the friggin dreadful unscientific field of psychiatry for that is what it is.
We have the senses effected, the brain, the soft tissue organs and the muscles and bones and joints and just about everything, the heart, lungs and kidneys do not escape.
you have a human disaster zone.
the catch.
No one knows about CRS and you dont fit in with, here goes:
the deaf world,
the blind world
the deaf/blind
the dystonia world
nor the parkinsons world
nor the cardiac world.
I am talking about we don't fit into just one world and because we do not, no one can do anything for us and no one knows which world is most appropiate.
we belong to them ALL!
that means we belong to none of them!
i am sitting in my wheelchair in holy ireland, and the people i do know with crs are sitting in theirs in america, or at least some of them.
and we are an eradicated lot, we have an eradicated condition hence we are eradicated.
we try.
you feck around the country in your adapted van (you used to until you crashed that into a tree) and went the length and breath of my (my situation but not unique) country to see a specialist here and a specialist there and a specialist everywhere.
you cannot get them either in the one team and not even in the one hospital.
you are not so unique though that we are nice specimens for study - we are!  and yes, CRS will come and go and come again and we will have more of us and more, there is no getting away from this.
It is cosy to say we are eradicated.
we are not, neither is the condition nor the cluster of ill effects to the ravaged body.
It is hard for me not to be protracted and think of every sentence, noun and verb, when you blotto tired and out of your tree with exhaustion.
its hard too when you are frightened.
lets list for instance all that is wrong with me, that is all they can see at the present moment in time -
I am deaf - i have about 35% left of hearing.
i am visually impaired and getting more so with macular degeneration, cataracts, detached vitreous, and rubella retinopathy.
I have scoliosis (curvature of the spine), but thats not as bad as it can get...we wont go there, we just wont.
Also Pes Cavis, thats another condition hardly heard of, small feet with unusually high arches, so you walking on bones, literally.
i have one short leg.
no special shoes and no shoe lifts, (the irish ran out of money, see).
Hypothyroidism - that is the thyroid is clapped out.
Primary Sjogrens Syndrome, the same as Venus Williams but without the money!
that means my moisture glands are dying and will die even further and i feel it.
Crohns disease, that is my guts are bad, very and i have gone through one bout of surgery for which the consultant let me out with an infected wound and it burst three days later.
No, i am not pleased nor will i forget that one.
I have Fibromyalgia, and no my friend, that is not yuppie flu or 'anxiety' its real and the WHO agrees with me (!) its a disease, period.  Its painful.
try it, every friggin part of the body pains and aches so that i cannot touch my own fingers and bones and have to lie and sleep in natural soft fabrics which are very light and if i cannot cope with that i use a bed cradle.
i also have raynauds, near frostbite at times that can be so bad.
now on the neurology side, i have generalised dystonia.
that is, my muscles are fighting with each other and when the left says to go one way, the right says go the other so we have a blitz of a contradiction so in the end the muscles do a sort of aerobic dance when it should be doing something else.
thats all over now, thats painful.  Try sleep with that, and restless legs, yep have that too!
We shall stay with the brain for a while cos this is a very good one...remember my distaste for psychiatry, watch this space....
I have frontal lobe athropy, thats causes early dementia, but i need not worry, i have had it for decades...its presumed to be part of the reaction to the wriggly virus, if it wriggles and i presume it does.
my feelings and emotions have atrophied so much that i am florid and verbose and laugh alot and cry alot and regulation of mood is kinda well atrophied, but to me its hell.
I had been put on anti-psychotics for this for decades.
Well, for depression actually, the type that says to me, jaz ann what the fuck are humans about..i was that befuzzled and still remain so.
Ah, but they have now sorted that.
I dont have a mental illness, which is great news for me, but i could have told them this.
i have Asperger Syndrome, also known to co-exist with CRS adults and not so adults.
Have you decided that i am a disastrous basket case yet?
I have.
Here is the sickest part...I have an identical twin...yep...half of me was once me and now it is her who is my right side and i am the left, or should that be i am the right and she is my left...i am left handed so i guess i am the righty and the twin is right handed and she is the leftie.
It doesnt get any better to deduce that she is fucked too.
As like our country.
we are trying so hard to end our days in relative, well, tell me.
we are not doing well.
i crashed the adapted van last week and nearly ended my illustrious life, and my twin was diagnosed with Breast cancer of possibly both breasts.
and we were out this morning at 8am and came in around 6pm and i then had to fill the coal bucket and eat.
I am screaming with the Big D, and the Big crohns and the big angst and the big whatsit.
we get little help from any source whatsoever.
we have a CRS confraternity.  them that say we shall be united for ever and ever amen.
well, thats what i thought but the only ones united are the ones with CRS not the ones that say we are united with them.
So 'Sense Scotland' has not responded to an email to request some help cos they say they join forces, well, they havent in my case.
I got no response from the Helen Keller Foundation, again my despair was kicking in.
and the anger kicking in big time now.
we are in effect left to stew and spew and wallow in the mud that is CRS, on our own.
the ones who have it bad are institutionalised, the ones that have it not so bad are so bright, well thats what i have found, they are going mental with despair.
we are going mental with despair.
without any consideration as to who we are and what we are and how we are supposed to cope we are trying to do just that, with next to no resources, either here in holy ireland or in America, that is the USA and the WHO may be impressed with an article for which they ask me to include on their website when they tried to impress on the world "would you like this to happen your kids?|"
after that, you are on your own mate.
as for some specialists, they are trying to help within their own specialists fields, but its hopeless.
we are eradicated and neh, i am not even vindicated.
i am shovelling coal and crashing vans and with legs that dont work and nothing works i am admired for being spirited, and thats about it.
"Ah, you are so spirited, I like that."
I do too actually.
but not CRS and no services.
we dont have a nurse, so they say, for they have a nurse for post polio and a nurse for ms but not crs, so sorry mate.
you have been duly eradicated.
i have, we have, all who have CRS have.
Do we even have family?
nah, no, neh never.
none, but i have the left side of me and she has the right side of me and between the two slapped together we are making a bacon burger of this.
If you read this and are in the media or in Ireland, will you tell the media where ever you are for we are with you there too, and if you are in Ireland, that is the 'little ireland' with the little i, cos there are some bigger irelands all over the place, but i am on the little island ireland would you tell Dr. O'Reilly, aka Minister for Health, in the Department of Health, Dail Eireann, Dublin Ireland.
that should get to him.
phone number, in the yellow pages.


Jamie said...

Good article Ann.
I wonder how long will Congenital Rubella Syndrome continue to be misunderstood by the medical system?

Unknown said...

I'm an 18 year with CRS and this is very helpful. Thank you for your courage! I have always wondered what I "might" become and this helped me understand a lot better; I have done research and what I have discovered is that I've never even fit in into the CRS community and it sucks being misunderstood. So thank you once again.