~BuT wHiLe I WaS aWaY....~

My Possum was sick

I knew he had a niggly throat over the weekend while I was getting ready to go

Actually I'd looked at his tonsils the week before and they looked 'tonsillitis - ish' but he reckoned he didn't need to go to the doctor etc etc

Anyway he got through the day Monday, Dad checked him out before he went to work and they decided he was 'fine'

Tuesday morning I get a message to say 'Possum has a doctors appointment at 11.20am'

He took himself to our GP for the first time!

And then to the chemist! (we had practised this before, so this bit was fine)

He does have tonsillitis again, our GP told him he may have chronic tonsillitis (like his mother) and we'd see how he goes on the antibiotics

I'd love a dollar for every time I have been told 'He's 19, he SHOULD.....'
ESPECIALLY from the outlaws....grrrr......

He's not like other 19 year olds. 
ONE THING AT A TIME!!!!
I know a few of my readers will get what I mean here.....

Another first - he opened a can of dog food and fed the dog Sunday night!!
He'd never used the can opener before!!
Well why would he?
There is nothing in a can that he eats......!!!

G
x♥x

~aNd ThEn~

We saw Matt the next morning ~ Tuesday at 10am...

We arrive at the desk, having checked out where we had to go the day before (cos I'm all organised like that...yeah...)....

We tell the receptionist we are there for an appointment with Matt - blank/puzzled stare - are we SURE it's with Matt?? Matt doesn't work there Tuesdays, did we have an appointment card?
"No, he emailed me..."
......then a 'I'll page him for you then' in that "oh here we go a pair of crazies got the wrong day" type voice.
Ten minutes later a beaming Matt arrives to see us, asks for a free room and off we go.
She must have thought 'who the hell are they?' ha ha!

So anyway Matt was thrilled to see us, and very pleased about our news from the surgeon.
We talked about all sorts of stuff, things he wants done before the operation, and MRI of SM's brain just in case - and another blood test, also requested by the physician we had seen the previous day, Matt added a few extra things to it that he wanted checked.....
I was blown away by the way the doctors over there put themselves out so much for Small Man - it was humbling - I have never felt such gratitude.
Matt was even saying that he was writing a thesis on genetic/endocrine disorders contributing to weight gain, and that in the back of his mind the whole time was 'does any of this/these fit with Small Man?' considering he has over 300 families on his books, that was mind blowing....let alone him coming in to meet us on a day where he doesn't work at the hospital....

He said he kind of knew the surgeon was going to agree, but he couldn't tell us that!!
He has 10 patients that he wants banded, as far as I can tell Small Man will be the first under this program - wow.

I'm sure there are people reading this that disagree, that's fine, it's their choice - but don't be too quick to judge me on this - if you have been reading this blog for the last 3 years you would know where we are with this - we have been pursuing this for at least 2 years, and haven't rushed into it.

Am I scared of 'putting him through this' ? I am scared of NOT 'putting him through this'....

He has  60 - 70kg to lose - around 150lb - luckily his blood sugar levels are fine...FOR NOW....I'm not prepared to wait for him to get diabetes.
We have tried everything else - Chronic Fatigue Syndrome and Selective Eating Disorder makes this nearly impossible to correct with diet and exercise alone.

And his mother is exhausted.

Can you imagine your child getting sick, and you keep waiting for him to get better for 4 long years, and it doesn't happen - and it doesn't get worse either - you are permanently in limbo land.

During all of this you are beaten down by other peoples 'opinions' and attitudes, you have to fight and wait for the most basic of things (like education, proper medical help etc).....you have little family support and your child ends up with such severe anxiety and depression at times it is frightening.....let alone the weight gain and self esteem issues....

So yeah - I'm going to do what I know is right - and bugger anyone that disagrees or wants to criticise me!!!

G
x♥x

~HoPe~

I have been trying to work out what this funny little feeling is that I have had since Monday...

I believe it is HOPE

HOPE for change, HOPE for the future, HOPE for my son's life to improve

We had a thorough assesment Monday morning for Chronic Fatigue Syndrome - there isn't a specialist here in Tas and so we whilst we had been given the diagnosis,  it never felt 'official' somehow.

The doctor we saw was just lovely (Dr R), Small Man liked him which is always a bonus. 

In fact he received some of the SM CHARM that is usually reserved for people after he gets to know them.

The outcome of the appointment is that Dr R is going to discuss SM's case with his colleagues - he said it's not a straight forward case and he wants to work out the best plan of action.

There was one definite factor though, and that is that SM definitely has CFS.

There will be another trip (co-ordinated with our pre op appointment).

From there we went to see the surgeon at his rooms in Williamstown.

He was running an hour late, but that was ok, we had time to catch our breath and prepare for the appointment, you know sort of touching on 'worst case scenarios' in the waiting room, just in case.

Our turn finally came and I was relieved to meet such a gentle, kind, slighty older gentleman - who has 4,500 lap band surgeries to his name - OMG!!!

Now I know why we needed to wait,( not in the waiting room) wait for the right person to do this for SM - and he is THE right person.

We went through SM's history, obviously Matt had given him the detailed account, and basically he agreed with me that:

a: I don't want to wait until SM gets diabetes and then try and fix it

b: I don't want SM to get much bigger before he has the operation as it will make it harder to do

 - there is such thing as being 'too big' to get a lap band (gastric band for my overseas friends)

We left the appointment with SM on the waiting list, and a questionnaire to complete and return to the hospital.

It's all happening - and possibly in a few months time.

We have decided that SM will be a private patient in a public hospital for this, if we had to wait for the Royal Childrens to approve the funding it could delay things, and plus that is why we have private health, I'm not out to drain the public sysytem for all I can get - quite the opposite. 

It was my first thought to use our private health if possible (bugger them, we pay over $300 per month and Big A's work pays another $200 I think (?).

This will dramatically reduce the waiting time.

The surgeon is only going to charge us the scheduled fee, so there will be no out of pocket, which will be handy as there will be a few trips involved, and we will be staying over for a few days after the operation, just in case.  I don't want to bring him all the way home and something go wrong and so on....always better safe than sorry!

I will write the rest a bit later, that might be enough for now!!

G

x♥x

~GuEsS WhO's BaCk...bAcK A-gAiN?~

What do you do when you are told in 15 minutes that you can indeed have what you have fought and planned for, for over 2 years?

Well you sit in stunned silence for a minute or so

You then say a very sincere and heartfelt - THANK YOU ♥

Because falling off the chair might look a bit weird!

To a very kind, gentle, experienced and extremely well respected surgeon who has just agreed to change your teenage son's life forever...

In fact Small Man is now on a waiting list for a lap band!!!

It could be done in as little as a few months time

We have some other tests to be done in the mean time, I will write properly tomorrow when I'm not quite as dead on my feet :)

G
x♥x

~GrAtiTuDe~

I'm all over it

No really, don't get me wrong I am not ungrateful that the outlaws are picking us up from the airport - with just the Small Man and myself going it's a bit of unfamiliar territory to us in the big city, without Big A to handle it

Remember last time they were overseas when we went over? It had it's advantages and it's disadvantages....

It's just all of the crap that goes with it

Like she asked me "What does SM eat" - I just chuckled and said it might be easier if we take a trip to the supermarket when we get there

I could tell by her "Oh o.k." answer that it wasn't how she'd do it and BY GOD HE'D BE EATING WHAT HE WAS TOLD TO EAT and NEVER UNDER THIS ROOF, YOU EAT WHAT YOU ARE GIVEN OR GO WITHOUT and the whole "Children should be seen and not heard" attitude - with some air of "No wonder he has a problem with his weight 'G' just indulges those boys I'd be putting my foot down"
You know the type......I have had the attitude from most of the family so I'm used to it by now
Does it influence me in any way? Hell no.....it just makes me slightly resentful.

And they WILL know what his limitation are and respect them - even if I have to tattoo it onto them they will get it by the end of the 3 days. 
I already started, when she asked if there was anything we'd like to do.
I told her that he will probably be a bit tired Monday afternoon (it's usually 24-48hrs delayed onset) because we have to be up 'early' (early for SM) Sunday morning, and then there's the flight and excitement etc, sleeping in a strange bed Sunday night and so on....and that he'd wouldn't be up to too much walking around or any long cars trips....

I think I am most curious as to the outcome of the appointment with the CFS clinic

I'm not nervous about the outcome of the appointments, what will be will be
I think it's more being prepared, not forgetting anything, being comfortable that things are all good here and just getting there.....

I am taking my old laptop, well it's not old but the one I owned prior to this one. 
A better choice for travelling and in the event of anything unforeseen happening to it.

So yes, grateful for many things today - and prepared for anything!!!

G
xx

A little bit.......

I'm feeling nervous tonight

I have my detailed instructions for disembarking the plane when we get to Melbourne

Cos everything has to be technical and scheduled - when you're an outlaw...

Jeez I must drive them CRAZY - hope so anyway!!

They were asking what time is this and what time is that, and I'm all "Derr I dunno I'll have a look" and then "Oh ummm...errrr hang on I'll find the email with it on....."

Little do they know I was planning on printing out an itinerary, but I'll keep it hidden, just to make 'em crazier

I told them I am meeting CM on Tuesday

They'll get over it - not having my whole entire time monopololised

Still lots to do and work to finish and clothes and stuff to organise and hair to colour etc etc

Then I'll feel like I am getting somewhere

I should add that I have actually been awake ALL DAY today, from 7am

 Must be a good sign ? :)

G

xxx

~SuRrEnDeR~

Y

Yep, I give up

Well...I feel like it today anyway....

I'm sure everyone feels like this sometimes (?)

Surely I could just do nothing until Sunday?

No?

Oh ok....

I am really starting to think this tonsillitis/sinus infection stuff is my body's way of telling me to slow the hell down

But the other side of slowing down means that things just don't get done - which creates stress in itself - so it's a catch 22

Thank you all that have commented recently, so much.  

It really means so much to me, I can't begin to tell you.

I have very little family support which makes the support from friends so much more special and precious to me

I think I will feel better when I get myself showered and moving today, I have managed to not fall back asleep this morning which is a positive in itself - the super duper antibiotics run out tomorrow....

G

x ♥ x

Hmmm....

Feeling irritable today

I don't usually feel irritable so it's strange, too many head stands perhaps?

I haven't gone a single day without feeling like a cigarette in the last 3 months

It's hard

Anyone who thinks it isn't hard has never smoked............

It may be a good thing I quit - might have been harder to get my tonsils out if I need to eventually....


Only a week to go til our trip to Melbourne

Wondering how it will go with the outlaws

That shouldn't be what I am wondering about though should it

*sigh*


G
xx

~CiRcUs~

I was watching a show the other night where they said nasal sprays/drops are really only effective if you 'virtually' stand on your head.
I hadn't stood on my head in ages, so I though well why not......

As you do....

Never mind the quality of the photo Small Man snapped it with my mobile

I am thinking this may be a handy skill for me to have if things don't pan out with my current job

I can join the circus or something

I heard from my 'new' boss for the first time in 6 weeks yesterday

There are further changes coming in that are going to cause dramas, more work, etc etc

Given our financial commitments we can't afford for me to not work at all

So I am once again hanging in there - I just get a feeling that this will either be an advantage at some stage for whatever reason.
I feel that there will be another role cut, and it's higher than mine, and it could put me in a good situation......so for now I will let it happen around me, not let it get to me too much and just keep on with it....

Wow only 8 days until we go away

I hope to have a much better idea of what to expect after this trip

In the mean time SM started with his new exercise physiologist this week, it went really well.
It was what I was expecting with the last one, to actually do exercise with him during the appointment, not sit and talk for 20 minutes.
And he offered for me to use the treadmill if I liked....squee!!
He remembered me from the gym I used to go to (a long time ago) and that I used to give the treadmill a good run!! I didn't actually have suitable shoes or clothing on, but next time I will!

I am feeling slightly better, maybe 10%

I have enough of the super power antibiotics to last until Tuesday, after that I will see how I'm travelling...I would be happy just to have a good few days while we are away...

G
xx

*SIGH x 100*

Feeling really 'trapped' at the moment

Trapped in a stupid body that refuses to recover from this stupid bug that has gone on for so long now I have lost count

Everything I do these days is painstakingly organised around the fact that any less than 12 hours sleep just isn't enough, and it's usually needed the most in the morning

I am almost to the point of avoiding seeing people because I seriously can't be bothered

I am still having hormonal problems, that have done an about face and changed into something totally different
I couldn't even be bothered mentioning this to my doctor at my last visit because nothing seems to be able to be done about any of it
I seem to be there every week, and I don't like it

I'm stuck between the two blogs now and I'm not sure which way to go - if I'd known this one was going to be relatively easy to fix I would have just done it....
I haven't really got the energy to transfer everything to the new one at the moment - I dunno.

Have some manuka honey and apple cider vinegar on order from one of my fav online stores "Inspired Wellbeing" - they have a sale on, and had free shipping if you spend over $50 plus I had a $5 discount voucher code which meant one of my items ended up being free.
Hell I'm spending $50 every time I go to the GP at the moment, by the time I pay for the gap and a new prescription - the Medicare safety net hasn't kicked in yet....and the money tree ain't yielding at the moment.....

Did I mention it's less than two weeks until I take SM to Melbourne?

*Sigh*


G
xx

I Am Moving.....

HERE

Not cos it's the current fashion ;)

I seem to have a bit of a gremlin here ~ and felt like a change.

Wordpress looks interesting, so will give it a try

I will keep this blog because the info has proven invaluable to look back on, and it's going to take some time to transfer all of my links over etc.....

G
xx

Another post about nothing...

I know, I could sense your anticipation from here.....!!

It's just been great - like sands through the freaking hourglass......

Tonsillitis x ?? Must be about the 6th time since September last year - or maybe it never really went away

The effects of fighting this shitful bug for so long is breaking me down this week - physically and mentally (just a little)

I look like hell

I am as white as a ghost and even have dark circles under my eyes - never had dark circles before in my life

I am long past caring if anyone catches me in my dressing gown - which is basically anyone that turns up unannounced before midday

I saw my GP Tuesday thinking it was this sinus infection again, and found it was tonsillitis as well

I have some strong penicillin to take for the next 2 weeks, if that doesn't work some more blood tests and who knows what after that.....

I have managed to get through 3 different appointments and a trip to 'town' though - I had 5 receipts for Medibank Private that had been sitting there since Sept last year waiting to be taken in - equalling $200 in rebate and another $130 to come - bonus. Must get onto the whole posting a claim in thing - I go to town once every 6 months at the most.
We put the claim in for a partial rebate on SM's CPAP machine
- submitted the $700 bill for the sleep study to Medibank + Medicare
- gave them our notification thing that they sent out to say we have almost topped the safety net again this year
-gave them another bill I had paid....

Then we saw the respiratory specialist again yesterday for a follow up on SM's second sleep study, and received another almost $700 bill, along with a letter from the specialist for when SM gets his drivers licence.
If you have sleep apnea in Aus you have to notify the correct authority and provide them with a letter from you doctor before you are allowed to drive. Same goes for a few other conditions.
My baby will be able to get his learners licence from September - aren't I just the old, old hag eh!! Ha ha!!

We also saw SM's therapist and came up with a good plan for his eating.
It occurred to me that his diet has become quite unstructured, without any planning it becomes too easy to eat things that aren't ideal.
The way I have been lately I have found it difficult just getting through the day, let alone much else.
So we decided to go with a weekly meal plan.
Not as rigid as Tuesday you will eat this, Friday you will eat that - just 7 different meals that we buy ingredients for all at once and he can decide on the day which one he would like.
I have written the 7 on the blackboard in the kitchen and he can choose which one he would like.

Hope to start with the exercise physiologist in a fortnight, just waiting to hear from him with an appointment.
This will be great, and I think SM is looking forward to it.

G
xx