Monday, 17 January 2011

a pause in the purge

I've been browsing old entries, calmly deleting some of the saved but not posted, until I came across this one from that time back in the middle of last year that I talked about in my previous post.
Somehow I can't quite bring myself to delete it.  Not because I want to wallow in the misery and upset (although I do have a whiff of that about me I know), but because it supports me acknowledging how I feel now. Proud and happy about how much easier all the hard stuff feels with some support in place.

I often wonder how people less educated, tenacious, stubborn and knowledgeable get through this.  How they cope or achieve anything at all.  With science able to diagnose more and more intricate chromosomal conditions, there are thousands upon thousands of mums, cast out to sea with only panic for company.

So for whatever reason, I'm going to post this and square my circle.

the post was entitled Cast Adrift

or where oh where has my paediatrician gone?

CW lament (these are the initials of my wonderful respiratory specialist who got us our diagnosis.  The lament is that no sooner did the heart man sign us off, that our only trusted medical person started to prepare us for leaving, especially as we no longer had medical insurance and would have to shoulder the cost ourselves).
horrid iron supplement prescribed by mystery person (one of my many kidney trips to the hospital had us walking away with an iron supplement for low ferritin levels, which gave my boy the runs, but I had noone to tell so I just stopped and turned to google for nutritional advice instead).
urine samples flying round Barnet hospital (it really did take me hours on the phone and weeks waiting to get results, with each sample I sent, repeating myself ad infinitum with fear and frustration rising).
no apointments forthcoming (if you're a mum you don't get through the secretaries, so I didn't know when I was waiting and when I was being ignored).
noone knows who we are (see above)

and the rest kind of speaks for itself

noone can bring it all together bar me
not even his daddy - sometimes especially not his Daddy (sorry xx)

post it notes, big concertina files, blue book, red book, filofax, papers at bottom of bag, order but no order
and in the background, the man who got us our diagnosis and confirmed that our lives had changed for ever, is receding slowly into the distance
and there's noone willing to replace him
how am I expected to do it?
everything's changed but nothing has come in to help with the extra workload.
D new job so no time
no let up for me and I'm having to find more time when I don't think I was coping before
No insurance means lost respiratory specialist, noone else across my boy, who knows my boy, trusts my instincts 
and it's all back on my shoulders.

cor.  poor me then.  lucky me now


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