Friday, June 21, 2013

the little mitro defects

well yes i best tell my blog community that now we seem to have a problem!

its kind a macro one really but comes in the form of a mitro.

its called mitro disease.
we have it - evidently.

well, yes we DID know of course we KNEW but we spent at least 8 years trying to find out how to know.
where to go
who to see
how to get there
and how to know how to get there.

it was long

and took a detective not afraid of assassins at every corner with the logic of their guns :  you dont have parkinsons you just want it.
but why CANT you do five minutes on the exercise bike?
A learned movement disorder from a past trauma.
we have real patients here.
a touch of anxiety and wind
she too dangerous to have home helps in her house
i wont take you shouting at me - if aroused my voice peaks and i have so little hearing i find it hard to moderate downwards, 30% hearing would do this you know.

so the bullets came and still keep coming as they want to take my powered wheelchair away, oh yes the HSE are even prepared to go legal on this, i am told!

well i shall say to the HSE that you have given me grief since the day i entered one of your famed, infamous institutions and if i have bashed away the demons why cannot you?
why cannot you even open your eyes and educate yourselves and leave us little mitro defects alone.

now thats the gun from my side of the argument.
my identical twin and i now know what is wrong with us.
we are what are called mitro defects and have mitrochondrial disease.
i am pasting in a link to a youtube video worth watching.
it usually effects children but can and does effect adults.
we will need far more support than we are presently getting.
both our breathing now is implicated and we will need oxygen by night and sooner rather than later.
we both need the blasted wheelchairs and i need them without the warrant for their arrests

this little mitro had to work hard to find the cause of our malaise, and it was me because through me then twin could go to the UK Lupus centre where they had a muscle specialist and so we reach this point.
one little mitro defect detected and one waiting with baited breath to be investigated in Queens Square london.
we are identical twins with the same dna and same/similar presentations so it doesnt take rocket science to deduce that i have it, and the good professor said as much today in an email but he still needs to get to examine me and find out.
i could have hopped skipped the loop but i doubt it very much.  i feel very mitro defective indeed.

so here is the link and any hse official or doctor who peaks at my blog where the link is attached to all emails, please be kind, please be more understanding and most of all PLEASE HELP and not make our lives more difficult than they need to be.
the LINK:

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