bit bewildered here

[Guest guest]

G'day all,

Long time, no post, hey?! But I've been reading the daily digest, and

feel blessed to be keeping in touch with some very special special

people on this list.

Truth is, I've been feeling a bit burned by a similar so-called support

system here. Some of the very people who have been sharing this JIA

journey for the past few years have not been very 'supportive' to

others. In fact, I get the distinct impression that some of them have

for whatever reason decided (and I hope to God it's not a conscious

decision) to get something out of their child being ill. I'm not talking

Munchausen-by-proxy or anything, more like a " let's see what we can get

for free " type of thing. And to be honest, it's making me sick to my

stomach. We are all very blessed to have groups or charitable

organisations that offer little things to sometimes take the sting out

of a serious condition, and most people I have met appreciate this most

gratefully... but when people seem to be seeking more and more, or bring

an entourage along, or act put out if they miss out on one of these such

events, well, I just shake my head and feel hurt in my heart. And when

someone reaches out to a support group, and gets criticised by others

for seeking support (or just having a vent), then I have to ask whether

some truly understand the meaning of 'support'.

So I've been trying to lay low, stick with those who really do have the

children's best interests at heart, and still work towards making a

difference for kids with arthritis the way I know best. Sadly, sometimes

even that feels like it's frowned upon.

Apologies if this seems like a pity-party, but I'm hoping to find the

support I need right now. Especially since it's now after 4am and I've

been up for two hours with my sick little boy (hubby took the early

shift and is now snoring in the next room while Bayly struggles for

breath next to me in my bed here). Bayly's tonsils are up yet again, his

nose is blocked yet again, and he's having 'obstructive sleep apnoea'

episodes. He keeps stopping breathing for around 3-7 seconds at a time,

2-3 times a minute. Couple of times I've had to give him a little shake

to start again. It's scary. This is what our nights have been like a

lot lately. Poor little fella's had things rubbed on him, squirted up

his nose, extra doses of Pred. We've had doctors' appointments squeezed

in, and now the thinking is to book him in to whip out the offending

tonsils, but of course there's a wait list! ;-) I'm really thankful my

husband is here tonight (he usually works night shift), so at least he

got the earlier shift with Bayly and I got a bit of sleep! :-D

Hugs to all, hope the Christmas cards arrive safely to those whose

addresses we had.

And thanks.

Jo

Bayly, 6, extended oligo