Archive for August 2009
You look tired.
Lots of people have been saying that lately and I don’t like it.
I especially didn’t like it on the day, last week, that I went to donate blood only to be rejected because my iron levels were too low.
I felt like I had let Ivy down in a big way.
I can’t say I felt much better when I was excluded on Friday from donating plasma as well because my ferritin levels were low too.
Last week was pretty ordinary and even though I don’t like being told that I look tired (translate; you look old and wretched) I must admit to feeling that way.
Meltdown week was hard.
Ivy cried alot, slept alot, ate very little and clung alot.
Yeah, along with the denial for three weekly Intragam, it was a really ordinary week
but
it’s IVIG day tomorrow, so things can only get better, right?
+++
So, my iron levels are low and my stores are low and I look tired.
I can’t donate for six months.
I need you all to donate in my place, okay?
+++
Why didn’t anyone tell me how little iron there was in cheese twisties?
Some of you have suggested changing over to cheese and bacon balls or honey baked ham flavour when I am next in need of comfort chips.
Surely with the bacon and the ham, there would be more iron.
What?
It’s meat…sort of.
It may or may not work but at least I laughed so hard I felt better than I had in days.
I have no title because, really, there is nothing left to say…
I knew it would happen.
I didn’t want to be all bitter and twisted and so I let my hopes build that Ivy’s immunologist would come through and that she would go to the three weekly IVIG.
She phoned last night to let us know that the National Blood Authority had denied Ivy the increase.
Apparently we have to prove that she needs it.
This lends itself to the question of how?
How are we supposed to prove such a thing?
Her trough levels are already low at the end of the month so what more do they need from her, from us?
How many more hoops will we have to jump through?
Oh, there will be appeals and applications and more tears and gnashing of teeth, just like the first time but
the next question is;
do we really want to?
I am tired.
Ivy more so.
Everyone is exhausted from the emotional turmoil.
It would be so easy to put down my gloves right now and there are some days I want to,
then I remember that it’s Ivy I’m fighting for, so I raise my guard again and prepare for another round.
It really takes it out of you, though, when you swing from complete hope to despair all in 24 hours, so my final question is this;
Is there a way to manage this without needing to up her dose of Intragam P,
without taking anything away from Ivy, of course?
Another avenue, a different game plan, if you will.
Is it possible to have a rock solid management plan, so that if and when Ivy becomes unwell, we can get her the treatment she needs and get her back to normal life as soon as possible?
I’m hoping so
because, in the end, that is the most important thing;
that Ivy has a good and happy life.
Blonde
When the news of the swine flu hit our television and a sea of people with masks on their faces beamed into our loungeroom everyone understood the seriousness of the situation.
Sombre, Maddy came to me.
“Mum, are those people wearing masks to cover the snouts that grew when they caught that flu?”
+++
The following week, Maddy stood at her bedroom door…
“It gets dark, when the sun goes down”.
Her twin sister and her friend fell about the floor in fits of laughter.
I must admit I smothered a few chuckles myself.
+++
Last weekend she sidled up to me and asked if she could dye her hair brown;
“Maybe if I change the colour of my hair, I won’t be so blonde”.
No, my sweet girl, I don’t think becoming a brunette will change much at all.
Post immunologist post…
The immunologist is a tiny Asian woman, seriously intelligent, whose thought processes move faster than our dog when he’s offered a sausage.
That’s pretty fast.
She throws questions and ideas at us, like a spinning fast ball and I feel as though I am never going to be able to catch up
but catch up, I do
and our ultimate understanding is that Ivy can have a trial of three weekly IVIG.
I’ll let that sink in for a little while, will I?
So, this increase is supposed to start tomorrow, except we haven’t heard from either the immunologist or the paed to tell us to come in.
I’d love to tell you that I was sure that everything would come to fruition and, if not this month, then definitely next month we would be going to third weekly
but I don’t want to get your hopes up, or mine, for that matter.
I mean, we were told Ivy could have the increased IVIG, by the same immunologist, once before and then it was denied.
We’ll see what happens, shall we?
Instead, let me show you some photos – messages that the girls and I spent a large part of Saturday writing for Operation Beautiful. They make me feel happy and hopeful.
Even Ivy and Noah got into the act;
