Monday, August 25, 2008


I rang the hospital the other day to inquire about my current place on the waiting list to see the new neuro. Their reply was that, while they have received all the referrals, they haven't allocated me an appointment because the neuro is winding down his clinics on this side of the hill - last month and next month were/is botox treatments (apparently used for facial nerve damage/issues - therapeutic not cosmetic), this month was something else but currently there are no scheduled ordinary consult days planned and maybe there won't be.

"Can I see him at his clinic over the hill?" - "Probably not, we aren't allowed to take their patients, they won't be allowed to take ours".

The tests he ordered are not completed, treatment he promoted so confidently has not even been discussed (I haven't seen him since the private consultation in October) let alone administered, not a lot of chance getting any at this rate unless GP can organise an out of area patient referral with WINZ picking up the tab. Of course, that makes it "elective" and Government Departments don't go much for "elective" when there is a perfectly useless specialist on this side of the hill to waste people's time, energy and the Almighty Taxpayer dollars on.

So, I saw my GP tonight we chatted about changing the Pams to something else, only I already had the only something else that's available and it made me all but blind so he suggested changing anti-depressant medication to something that won't fuck up the Pams (and very much vice versa), carried on checking weight (stable), checking blood pressure (normal) and agreed that I was pretty much screwed by a Health System that benefits itself, not its consumers because I was born with MS and come about nowhere in the Healthcare stakes, rather than being some pisshead scumbag who wrapped a car around a lamp post and banged myself up, in which case ACC would have every out of town specialist I wanted available at my request, as necessary, at their cost.

So where does that leave me? Marginally better off than a year ago, and the 5 years before that. The only advance is that I have a benchmark of sorts now (even with only the two tests completed) that shows that I have MS, that it hampers my mental and physical abilities and that it's active.

And I'm gutted. It doesn't matter how hard I fight this fucking MonSter, I can't so it alone and between a system that doesn't care and an increasing pressure from the educationalists to bend over backwards until I snap in their desire to make my kid learn despite a major migraine issue, I feel like the filling in an overpriced and under achieving governmental sandwich where everyone matters except me. And while this blog is about me, that's all that is. I even mentioned to Ads traveling teacher tonight that they can all push as hard as they like, but when the stress they are constantly applying pushes me into care because I can't cope any more, as the only parent these two have there won't be anyone to get either of my kids to school and when it's all out of my hands and everything is in ruins financially and domestically, that the whole world does not revolve around Ads, sometimes it HAS to revolve around me. They seem to have unrealistic and ignorant ideas of what being a single parent with a degenerative disease really means to those who have to live inside it, and beside it. It's not just being disabled; it's being sick, too.

I'm sure it's easy in their well fed, overpaid, $120K plus income a year households with husbands to carry some of the load to turn a blind eye to how a big chunk of the real world lives.

As for us little $20K a year beneficiaries, we don't matter, I don't matter. Just as I thought.

And people around me on Easy Street (which is almost everyone compared to us) wonder why I want to just give up. What the hell is there to fight for and what am I supposed to do it with? Oh yeah, that doesn't matter, either.

For some people seem to think this is "living" because they (the lucky buggers) don't know the difference. I've given up fighting to live, now I'm just trying to exist and between you and me, it's not going very well. Once the last of your dreams die, there's little point carrying on, eh. And mine are all dead now - some of my best "friends" helped achieve that.

Some days, ya simply run out of spoons.


cwnda said...

I've been blessed with some spare spoons. I wish I could share ...... -Ô¿Ô- 

I has a bucket! said...

Everybody needs a spoon to make coffee with. And apparently we should all have a towel with us 24/7... according to Ford Prefect. :0)

Gorgiamus allos subjectatos nunc - We gladly feast on those who would subdue us ...