Sunday, November 20, 2016

Bill is dead, LONG LIVE THE QUEEN

Not that I'm a Queen in any sense of the word. Bitch Queen possibly.

However, the news appears to be entirely true, the reports are in Bill (my tumour) is dead. Dead dead dead. Fuck you cancer. I have not read the reports yet myself, they will be posted to me. But my surgeons tone of disbelief as she read the contents of both reports was enough to convince me that they are probably correct. Since no one was expecting anything like the insane level of recovery that has happened, most reports are currently being read in tones from startlement to outright WTF?

Because the short version of the story goes: One day while lying in bed I was startled by a lump in my right breast... after an extremely hurried trip to my GP, followed by an equally hurried trip to Breastcare Canterbury, ONE HELL OF A TUMOUR was found. Like 7cm across big. That's a pretty big chunk of a boob. For some people that would be their whole nork. At the same time samples were taken of the nodes under my arms to check for spreading cancer cells. Because with a tumour that epic they expected there to be some. Two biopsies showed no sign of spread, but since both samples also showed no actual node tissue, and a couple of nodes were enlarged it was assumed that the spread was there and just managing to escape notice (in reality it turns out that against the odds there was almost certainly no spread - no cancer cells living or dead were found in the removed nodes - and it was just my dicky immune system [oh hai, fibromyalgia, thanks for being good for something for a change] causing the swelling in the nodes]. So after two rounds of chemo (second was stopped because it was doing truly horrible things to me), and an exciting double surgery (two teams working at once to remove the lump in my breast and my suspect ovaries - yay no more fucking ovaries)... there is now ZERO, yes I said ZERO sign of living cancer cells in my body. I still get to have the radiation and the prophylactic ongoing pills as a *precaution*, and because my odds of getting cancer for a second time are rather higher than for the first. Because fuck you cancer. 


Anyway the point of this entry is to thank an AWFUL LOT OF PEOPLE. Friends, you all know who you are - though I will thank one person in particular for having been there every step of the way, with jokes, gifs, a virtual handhold and all manner of things to take my mind off the impending doom of it all. Family, obviously. My daughter above all, who has stood beside me while I had all manner of things poked into me, has acted as nurse, therapist and confidant and of course offered me nothing but love through it all. Kitty you are the pride of my life, I have made nothing better than you. 

You guys have all been amazing from the little things to the big. The help when I couldn't do things for myself, the ongoing abuse Declan kept up no matter how bad things were - I love you bitch. The cleaning my house when The Girl could have been but was struggling with all the shit too (Carolyn that means you!) Mowing my lawn, and thus tolerating my douchenozzle neighbour. Marsden how you didn't lose it that first time you met him I have no idea. ALL THE TEA AND COLOURING IN BOOKS. 

Then this odd assortment of charming celebrities who have literally no reason to give any kind of a damn and yet provided small doses of support that helped in moments when I really needed it. Of these, two stand out: John Barrowman for aiding and abetting in this photo taken at Melbourne Comic Con...




... which has given me no end of amusement, and for generally being extremely lovely. 

And Samuel Anderson, who we met at Wellington Armageddon and then stalked over to Melbourne Comic Con, we went out on the piss in Wellington - and the rest of the story is redacted. No ones clothes came off as far as I am aware, that is all... 


Mr Pink. Samuel Anderson. 

There were others...
Natalia Tena bought us drinks

  
Lovely conversation with David Giuntoli
  
The utterly charming Rose McIver, who we also stalked from Wellington to Melbourne
   
Manu Bennett, who we actually met before my diagnosis - but his stories of his own battles were a source of strength for me.

And a special thanks to our own lovely John J Campbell, journalist and all around good guy - though we have never met, you have had so many kind words for me and shared hoorays for the All Blacks and the Black Caps, and wordplay, and just the joy of watching you stand up for the little guy so many times. You're a good bloke JC. 

That cleft chin though. Marvellous.
And now to the two people who have consistently been there when I needed a hand up. 
My dear Imaginary Friend, who I hope to make a bit less Imaginary as a part of our FUCK YOU CANCER tour of the Americas. Paul Blackthorne, Actor, Photographer, lover of alive animals. Whose matching sense of humour and kindness has been a terrific support to me. You are well and thoroughly imbedded in my heart now. More fool you. 

Quite clearly my kind of dickhead.
He has immaculate timing with his missives, always when I most needed a pick me up. Also he has excellent taste in terrible jokes.



And finally, but most of all, my endless gratitude to my dear and beloved Matt Davie, for keeping in touch all the time. For sending outstanding tea. For making me laugh. For being as misanthropic and cynical as I am. For holding my hand from far too far away. For making me go get my teeth repaired. You were right, it did make me feel better. For talking through all sorts of medical crap that I was thinking about... but didn't want to talk about... but needed to. For being mad about things on my behalf, saving me from having to be pissed off when I didn't have the energy. For understanding what an utter fucking muppet I am, and still liking me anyway. Just. Everything. You were always there when I needed you, I will always be there for you. Dick. 

Basically what I'm trying to say here is, I love all you nerds. And you have all helped to save my life. Victory is ours.

Peace. Out.

Saturday, March 5, 2016

PSA: I seem to be making a few of these.



So I have this fund being built to help me with the increased costs that are already starting to creep up on me #FUCKCANCER 

But there's a thing I want to make really really super clear - I don't want anyone to donate money if it's going to make their lives uncomfortable AT ALL. I am not yet at the HOLY HELL Y'ALL I'M GOING TO DIE WITHOUT [insert crazy expensive treatment here].

I don't even know yet how desperately expensive this is going to end up being. Obviously it's going to increase costs in all kinds of places, every day I think of more things I'm going to have to spend extra on just to stay alright-ish. I can't skimp on power this winter. I can't eat whatever's cheap. I can't let my phone run out of credit. All the things I could sort of get away with as a broke but only semi broken person. Well, not so much now. I can't walk instead of catching a bus even. It's too tiring. Excuse me I just have to go and be slightly miserable over in this corner for a minute. And make a cup of tea. 

Thanks for being a fantastic Imaginary Friend Paul


But in theory I can pull the crisis care from my life insurance, that'll cover quite a bit. I'll be able to pull my Kiwisaver fund (hahahahahaha, I'll let you all know how THAT goes - John Campbell, my precious, I have not forgotten to keep you posted on that - I'm still working on getting sufficient ID together for it. Headdesk.) 

At this point, this funding is to make sure I have enough up my sleeve UNTIL I can get those things organised. For random scans (I can't take the time for waiting lists, some things will have to be done privately) So I can get all my prescriptions (instead of playing the usual game of "what can I live without this month"). To make sure I'm eating properly (which I have not really been doing, because who can on a benefit, especially when you're trying to stretch one benefit across two people) & to make sure I can get all the little things that pile up on you and it turns out you can't ignore when you're sick. If it turns out I need *magic unfunded medicine* or *voodoo surgery* we'll cross that bridge when we get to it. 

So if sparing me a few dollars is going to mean missing out on something yourself, for the love of [insert what you hold dear] DON'T. 

And so that we remain upfront on money matters: A chunk of my crisis care is going to be used to take Kitty and I on a trip together. Assuming I am well enough to go when the time comes. This is because a) we haven't had a lot of holidays together & b) if the worst comes to the worst I'd like her parting memories of me to be of good times. I've been the kid who has few good memories of a lost parent, I really really really do not want to do that to her. 

I love everyone for wanting to give, I love everyone for wanting to help, but please for the sake of my sanity only give what you can. You love, your kindness, your presence is enough.

Peace. Out.

The fund is here, if you want to take a look (update: fund is now CLOSED, but you can still look)

Wednesday, March 2, 2016

The Once and Future Queen

Stuff happens in people's lives some of it good some of it less than good. I'll be talking about the bad stuff today, but I don't want people to think it's all doom and despair, I've had a plenty good road.

I was born, a tiny little thing, on Christmas Day in 1970. Since then quite a lot has happened to me. Many people have said an unreasonable amount of it was bad, but I think my daughter more than makes up for it - since she was born the scales are tipped forever in my favour.

The bad are a little series of stepping stones towards today.

When I was 9 my Mother died of cancer, after a horrible battle with it. FUCK CANCER.

When I was 14 my Dad had his first heart attack. It wasn't long after that that he had double bypass surgery. When I was about 20 he developed cancer, and against all odds (seriously his odds were terrible) he survived. FUCK CANCER. Then when I was 25 he died of nothing.

Kitty was born the following year in an emergency c-section. The whole experience sounds horrible. I only remember the good bits and the funny bits. We're both alive, that's pretty good under the circumstances.

Since I was about 20 I had a lot of random things wrong with me, they niggled at me but seemed to be unconnected and un-serious so I didn't worry too much about them. But over time they got more annoying & harder to ignore. And I started having trouble sleeping, which just wrecked me. Chronic sleeplessness is a total dog. The situation became steadily worse. Eventually, around age 30, I was diagnosed with Fibromyalgia. It's a pretty shit condition, if you don't know about it, look it up - you probably know someone who has it.

Roll forward a bit, because while the Fibro isn't going anywhere it's also super boring. A couple of years ago I started experiencing new symptoms. That while they COULD have been my Fibro being weird and throwing new things at me, I was absolutely convinced were not. It started with a cold. The cold definitely wasn't the Fibro :) 

I got a cold and it turned absolutely unbelievably vicious. It felt like someone was leaning on the left side of my chest. I could hardly breathe. Coughing was killing me. It went on for months, and it never entirely got better. Eventually the cold went away, but the left side of my chest still feels like someone is pressing on it. I've been incredibly careful not to catch any more colds. After the cold went away my doctor totally lost interest in it. "Probably just Fibro". Everything is, right? 

Shortly after that I started losing feeling in my left arm. My thumb, index and middle fingers are all pain, no feeling. I can't tell what they are up to, if I touch things, I feel the increased pressure as increased pain but I have no idea what other things might be going on. I can still use the hand, sort of. I'm typing with it right now - but I don't touch type with it anymore. The right hand is touch typing, the left is being watched and told where the keys are. I watch the finger lower to make sure it's in the right place. When I cook I have to be careful with blades and heat. Particularly heat, I don't notice it burning until it's far far too late. By looking, and going "shit, that's probably burning". 

The rest of my arm is slowly but surely disappearing. Figuratively and literally, as I'm experiencing tissue wasting too. 

It took a ridiculously long time for my GP to finally refer me to someone, and I'm fairly sure he only did because he was bored with me whining about it. Because it's "probably just Fibro". The first specialist was a Musculo-Skeletal guy. He was great. Full examination, TOTALLY NOT FIBROMYALGIA. He ordered an MRI, which was a bit inconclusive but confirmed his suspicion that something was going on in the Brachial Plexus region, with the C6 nerve. Not his department. So he moved me forward to Neurology. (Hilariously this is what I expected right from the beginning, but something something, pathways something, boring). 

The Neurologist is also great. He was very thorough in his note taking and going over my whole entire body looking for anything out of place. Anything else that might be a neurological symptom and narrow done the possibilities. He ordered a detailed MRI in the bigger, funkier machine at the main hospital. 

Some people are scared of the MRI machine, some people are just uncomfortable. If it wasn't so bloody noisy, I could fall asleep in there. The new MRI shows a *something* in the C6 nerve root, which we are calling a Nerve Sheath Neoplasm. Which is Doctor speak for something on the nerve that shouldn't be there. They'll find out what by taking it out most likely.

But now things get messy.

Because I was lying in bed, contemplating my shiney new appointment to see a Neurosurgical Consultant to talk about cutting me open when, my arm brushed my chest and it didn't feel right. So, shaking like a leaf I checked my boobs, Lefty is mysteriously fine, what with all the other left side bollocks going on. Righty. Righty is not fine. Righty has a FUCK OFF enormous lump. I freaked the fuck out, and (this is where you all laugh at me) checked the internet to see how much panic was required. Calmed down a bit. Because for the first time in the history of humans looking up health stuff on the internet, it was actually useful. Then called my clinic, where one of the lovely nurses said yes it was totally understandable that I wanted to be seen right the fuck now. And got me to come in immediately. Where I was duly felt up by several people. And a mammogram referral was sent away. Breast Care NZ called me the following day, because apparently there is a section of the public health service that can find it's ass with both hands. I went in for just a mammogram. I came out with a mammogram, an ultrasound which I am sadly talented enough to read (so I already knew it was *not good*) and an urgent biopsy. Urgent in front of biopsy is probably not a combination of words I need to hear ever again. The results were in very very fast indeed, and I have an Invasive Ductal Carcinoma. A big one. It only remains to play count the number of nodes that it's playing with (zero would be good) and see if any other organs are involved (no would be good) and see if I might be Hormone Receptor positive (yes would be good). So the tumour lottery is not yet over. But a lot of the good answers are out of the game. I HAVE CANCER. FUCK CANCER.

The doctor performing the biopsy, thinks the MRI's and also a ultrasound done on my thyroid a while back should be looked at again with this diagnosis in mind. This is not good. I would like them not to be connected in any way.

My GP is probably trying to find a way that it could be "just Fibro" he's certainly still trying to water down the potential seriousness. I'm ignoring the crap out of him and talking to the specialists instead. 

I called my clinic. To find out who I had been referred to, what other referrals might be needed and what else I needed to do. "I'll find out, and call you back. If I haven't called back by 2pm call us again".... 2.30pm I call them again. My nurse is on the phone to some other poor soul. There's nothing in my notes (surprise, my doctor is the worst note taker) so the other nurses can't even find out for me... never mind I say, just get her to call me when she's off the phone. Of course they will. NOPE. So the following morning I call again. I've been referred to surgical (apparently some special Breast Cancer department I was totally unaware of before exists for this kind of thing) but they don't need to refer me to Oncology yet, these super folk in the covert breast cancer department will if it comes to that. I am now picturing Breast Cancer nurses dressed in black suits, with bluetooth headsets and dark glasses. Because at 45 years of age I'm still pretty much 12. 

Later that morning, my GP calls, all full of apologies for not getting back to me earlier. I wasn't really expecting him too, I am aware of the combination of his slightly useless nature and well overbooked schedule. Turns out I'd probably rather he hadn't called anyway. Because he either hasn't properly read the information or thinks I'm an idiot (that's not fair, less clever than I am is probably more accurate - I am that level of obnoxiously clever that makes many people want to barf). He's trying to reassure me with platitudes and telling me things I know aren't accurate. Then he tells me if the hospital hasn't got back to me in a week I should call him back to get him to hurry them along. A WEEK. Are you fucking actual kidding me here?? A WEEK???? I am literally unable to say to him how ridiculous this is to me, and file it away under, don't bother I'll just hassle the hospital directly.

The hospital calls that evening. A very nice nurse explains that the consultant needs to look at the file and decide what needs to be done, that will happen this evening and she'll get back to me in the morning. I mention the cowboy'd up axilla biopsy and that it will probably need to be redone, and she puts that at the top of the list of things to check with the consultant. SHE JUST CALLED SO I WOULDN'T SPEND ANOTHER EVENING WORRYING THAT NOTHING WAS HAPPENING. 

She calls back in the morning, exactly like she said she would. This morning. She confirms that I was dead right and the first thing to do is get the axilla node biopsy repeated. So they have put a referral through to Breast Care NZ at St Georges to get that organised.

Rather than wait, I called Breast Care NZ to see if I could shake things up. They will call me the moment they have the referral on their desk (fucking hospital systems, referrals take forever to get where they are going - what even is that in this day and age??).

So back to waiting, but hopefully not for very long.

Then the discussion on how much of me we're going to need to cut off. There will be no discussion regarding boobs. Screw lumpectomy. Screw single mastectomy. CUT THEM BOTH OFF. JUST DO IT. I'M NOT KIDDING. 

The discussion will be around lymph nodes, and whether there has been further spread we need to twist our knickers over. My knickers are already pretty twisted frankly.

I HAVE CANCER. FUCK CANCER.

Peace. Out.

PS A friend has begun a fundraiser to help with medical costs, and perhaps some fun. If you have something to spare lovely, if not also fine.

https://givealittle.co.nz/cause/helpdianabattlebreastcancer/donations

Thursday, February 11, 2016

An Epic Meltdown of a Day



And it started so well (I'm not even a little bit joking that this bit of my day was super-awesome, it's not irony, I'm still laughing my head off about it) with Peter Dunne MP throwing a wee 2 year old tanty and blocking me. 









That was all the entertainment value that will be contained within this post. Think of it as me starting with a joke.

It was all downhill from there.

Because as if I don't have enough exciting medical related crap to worry about, this afternoon I found a lump on my right breast. A huge lump. How big? It isn't small. So in a fit of panic I blubbed for a while, then made a number of frustrated and pissy noises at the universe. Then I called the doctor. His nurse was very understanding and nice, because opposites attract, and told me to come on in and they'd squeeze me in somewhere. 

So in I went, and duly had my boobs poked and prodded, the upshot is given all the hardly any information, I'm probably not dying. But best to be on the safe side, so on the urgent list for a mammogram I go. Because FUCK MY LIFE. If I wasn't still in something resembling shock I'm pretty sure I'd be finding this hilarious. There's a part of my brain that's laughing hysterically anyway, but I'm pretty sure that's mania. 

So anyway. That's two lumps. Where will the next one show up? Who knows. It's like tumour lottery. I FUCKING DIDN'T BUY A TICKET. Are they connected? Who knows. Until someone has a look at at least one of them, NO FUCKING IDEA. The upshot of this section of this post is, I have no answers. More questions, no answers. Story of my life actually. 

On the way home in a fit of maudlin something or other, I decided that if the race to kill me become a reality, I am so fucking totally taking the crisis care part of my life insurance and going to go wherever I need to to meet Paul Blackthorne. Because if life gives you tumours, make travel plans. Or something like that. 

There is much anger in me at the moment. I'm going over to the dark side. TWO FUCKING LUMPS. OK both of them are "probably nothing" BUT MY PARENTS BOTH HAD CANCER, my equilibrium is a touch off right now. As in, spinning on the pavement like a lost hubcap. For the next couple of days, universe, I'm calling in insane. LOST THE PLOT ENTIRELY. I plan to hibernate, but can be reached via social media or email. ALL VIRTUAL HUGS GRATEFULLY ACCEPTED.


And now back to listening to The The, because it matches my mood


Peace. Out.

Monday, February 1, 2016

Well it's a start

I find that I haven't written (ranted) about my favourite bugbear, education, in quite some time. How remiss. However now, with Labour's new education policy coming out yesterday, seems like a good time.

Three years of free Tertiary Education for all New Zealanders. Well OK there are a few ifs and buts and such, but in the long run that's what it will amount to. Labour are calling it Bold. which I find slightly hilarious since Tertiary education was once near as dammit free to all New Zealanders anyway. Until this cockamamie idea of charging students a bucketload instead and letting many of them get into horrific debt was thought up. And worse, introduced without a cooling off period to allow people to begin saving against it. Just 'lols, sorry poor folk, please form an orderly queue at the loans office'. 

But three years of free Tertiary education is actually a pretty good idea, and shapes up against the totally free system reasonably well. Most people are only seeking a Bachelor's degree, which is attainable in three years. A Bachelor's degree is basically going to be useful to your impending career almost whatever you choose to study and whatever work you end up taking up. You will pick up useful skills whether you meant to or not. (Even Steven Joyce probably inadvertently picked up some useful skills somewhere along the way, he just hides them well). Obviously I would prefer free education all around, but this isn't a bad idea to get the ball rolling. I would like to see that assistance rolling over to Post Grad study, as Post Grad's really aren't being assisted nearly enough in this country. 

Right, so I guess here is where people start saying things like "oh, but those people will be paid shed loads in the future so why can't they just take the debt as part of that investment" - OK there's a grain of truth there, as there often is in the petty whinging of people who don't actually have to deal with the situation themselves. Post Graduate students cannot claim a student allowance. And the government loan's living allowance is NOT EVEN CLOSE to a liveable amount. Not to mention adds to your debt. 

Here's an example of how balls that often turns out to be.

Let's say a student comes from a broken home and is only being supported by one parent, who earns under the threshold for student allowance. But the dead beat parent* earns enough to take them over the threshold, so much over that the student will either earn NOTHING or next to NOTHING from student allowance, so little that it's actually not worth claiming it - just in case they decide to do a second degree later in life or something. This student will become a self governing entity just in time to no longer qualify for the allowance because their studies are Post Graduate. Despite coming from a low income situation, they receive NO extra assistance to help them get through - just debt (who cares you say - Stephen Hawking came from a relatively low income environment, without aid he might never have got to where he now is... do we really want to leave these treasures behind?) 

There are limits on how much and for how long you can claim various loan and allowance options. OK (assuming for a moment that I accept the idea of charging like a wounded bull for education, which I don't) lets say for most students those limits are not unreasonable. But there are people who's studies are of tremendous benefit to the country and of necessity break those limits. Can't we have a bit of leeway here? Personally I don't want our medical students any more stressed than they have to be. And like it or not lawyers are a necessary evil (hell I even LIKE some of them). Doctorates in fields that are important to New Zealand's GDP surely we should be making sure they get the best start? If you're dicking about using Uni as an excuse not to enter the real world (seriously is any one doing that any more - surely it isn't even possible without a trust fund??) sure you should probably have a reality check and be sent merrily on your way, but if you're legitimately studying towards a productive end then why the hell are we trying to make it difficult for you? 

It honestly seems to me, as a basically outside observer, that we are actively trying to make it really really hard for anyone that doesn't come from money to get a decent Tertiary education. Particularly Post Graduate. Have we had progressively more greedy and stupid people in government? (Certainly judging by a certain Thickypants McStupidhead's repsonse to the suggestion of three years free tertiary I have to assume YES. Apparently this plan will "achieve nothing". Whatevs sunshine. It's not like you're Minister for Tertiary Education or anything. WELL FUCK, YOU ARE YOU SAY.) Do we actually want to split the country into the 1% and a bunch of uneducated sheep? I mean really, putting aside the apparent desire for magnificent hegemony over the country, lead by a smarmy douche who gets away with everything by pretending it's funny. Do we really want to live in a country where most people just don't have access to good education, social services, healthcare.... Please go take a look at a third world nation and rethink this plan.   

My stance is probably always going to be, give the motivated free education (I don't object to the "you failed without good reason, fuck off" policy as such). But giving education away to everyone who wants it can only better the country as a whole. Please feel free to tell me that it doesn't matter if your street sweeper has read Chaucer, I disagree. Education isn't just a means to an end. It opens minds. Also fuck off with your piss poor attitude towards "menial" jobs. Do you want your roads clean? I digress, as usual. I've always felt that quality education taken to whatever level people want to take it to,  makes everyone better off in the long run. The only people I see actively arguing against that are greedy assholes I don't have any interest in being associated with. 

Well done Labour, please feel free to take this one even further. 

Peace. Out.


*dead beat parent - IRD expects the parent the child is not primarily living with to pay child support until the child turns 19, this is a legal requirement but is often difficult to follow up on. Most offspring start university at around 18 or 19 so the dead beat parent has NO LEGAL OBLIGATION to pay any further assistance for their upbringing. So they don't. But their income still counts against the child's allowance. So, are they an adult at 18, 19 or 25? Make up your fucking mind government. Or at least stop arbitrarily changing which number you use based on which results in you paying less out in assistance.

Tuesday, December 22, 2015

So useless it can't be an accident

So it's not actually their treatment of me that sparked this - it's their treatment of other people. I'm pretty fucking useless myself. My memory is pathetic, and is made worse by things that are causing me to be anxious, so I avoid the shit out of situations that are likely to cause me extra stress.

And dealing with Work and Income New Zealand is about the most horrifically stressful thing there is for someone in a first world country without developing a terminal illness. If you've ever really wanted to be treated like you have absolutely no value to the world, intimidated, mislead, and expected to be grateful and meek about it I can't recommend WINZ more highly. They are your go-to non-sexual dominatrix service. 

My current extreme annoyance with them at the moment is rent reviews. They have taken over providing this *service* for Housing New Zealand, under the Social Housing branch. And they are apparently fucking AWFUL at it. Rent reviews are a fucking stupid idea in the first place, as are a lot of the other hoops they make poor people jump through. They are an appalling waste of time and money. As are most other hoops they make poor people jump through. No repeating that wasn't an accident, get used to that line - so much of the social welfare system can be summed up as a useless waste of time and money. And so much of their procedures can be described as jumping through hoops. Pointless and draining, and potentially making your situation worse.

Anyway, rent reviews. Why the fuck aren't government welfare services all linked together with the IRD? It would actually make welfare fraud more awkward to commit AND negate the *need* for a lot of these useless hoops. If Rent Reviews were performed simply by an automated check of annual income of anyone living at that address then a whole wad of paper pushing just disappears in a poof of magical *I didn't want to fill this bullshit in in the first place*. Here's the thing, people are apparently concerned about some kind of intrusion of privacy... but wait the rent review relies on me giving them exactly the information that IRD would give them, why can't I just sign a document when I move into a government housing facility that says I'm OK with them receiving my information? They can't tell me that people might not be declaring their income properly to the IRD is an issue... because if they aren't declaring it to the IRD they aren't going to declare it to WINZ either. D'uh. The reverse however isn't true. I declare everything to the IRD, but it's easy to miss stuff when declaring to WINZ, and declaring stuff to WINZ when you're already desperately short of money - well lets just say sometimes that it can be easier to mislead WINZ - even knowing what a risk it is long term - than it is to lose some of your benefit. Or have to pay more rent. People avoid telling WINZ about changes in circumstance by and large not because they are happy to dupe the system but because losing even a tiny bit of income can be disasterous - and WINZ is not terrifically open to hearing about how your circumstances might actually not be what they appear on paper. Maybe they'd have more time for reality if they weren't so busy with all those fucking hoops.

So, while I am utterly useless at handing in paperwork on time, and completely hopeless at making appointments because I have to cancel due to illness so often, one would hope that a government whose soul purpose seems to be making people fill out more fucking paperwork would manage to be somewhat reliable at processing it. No. Besides their exciting habit of losing your documents (hint for young players, whenever you take anything in to the MAKE THEM TAKE A COPY AND DATE STAMP & SIGN BOTH OF THEM, trust me you will have less trouble with all sorts of things if you do this simple thing - the receptionist will scowl at you, but stand firm.) I handed in my rent review 1 month ago. Aware of their douchnozzlery I called them today to check on it. They don't know how much longer it would be. I explained why it was urgent (I like eating) and he said he's mark it as priority, but he still couldn't tell me how long it would be likely to take. This concerns me. Because The Girl's father is no longer paying child support, and she doesn't get a benefit (trying to deal with that, complicated by her anxiety hitting the roof if I can't go to WINZ meetings with her... there goes my illness fucking everybody's shit up again) And may not get a student allowance when she starts university because her fathers income is high. I have many impolite things to say about this. So I'm supporting both of us on one single persons *jobseekers* benefit - no, to be fair it isn't actually possible to do this. We are alive because of the kindness of family, friends and strangers. If we had to rely on the government we would have starved to death over winter. Back to the Rent Review... so I'm slightly concerned because last time (these things happen yearly) it took 3 months to complete. THREE MONTHS. THREE MONTHS, MULTIPLE COMPLAINTS, AND A LETTER TO THE MINISTRY. That letter got things moving really damn fast. I'm thinking I might just bypass the 4 more complaints over the next 2 months and just go straight to the head of Social Housing. Not Paula Bennett. I'm pretty sure she would just set fire to such a letter, on a moonless night during a satanic ritual. I feel like if I muck about any longer we may waste away while waiting. (I have lost quite a bit of weight thanks to not having sufficient money to feed us properly so that's a bonus, since my illness like to make me fat with all the lying down doing fuck all and such. 

I'm on a *jobseeker* benefit. I should be on a sickness benefit, it's stupid that I'm not. I have a permanent illness, and while it is POSSIBLE that I may be able to work under certain circumstances, I am not now, and there is no real way of knowing WHEN I will be. Especially since on top of my usual boring chronic illness I now have all these groovy new symptoms that they still haven't figured out what the fuck is going on. (That's a whole other whinge that I won't start - 18 months and they still haven't made any real headway on what's wrong. Because waiting lists, and other DHB fuckduggery). But the upshot is I'm in bed a lot, I feel like shit a lot, and I am in serious pain literally every single minute of the day. So fucking stupid hoops I have to jump through are literally making my life more fucking difficult. 

Part deux of what's pissing me off...

Recently they decided (apparently based on some survey they did in which we told them we wanted this - I don't fucking think so) that sick people would have their own kind of case manager (good) who (theoretically) know more about dealing with chronic illness (brilliant, if it wasn't just a theory) and would check in with these special case managers more often (terrible). OK it wouldn't necessarily be terrible, but they are going about it ALL WRONG. First each persons case should be looked at individually to see what's actually appropriate for them. I had to cancel an appointment I had today because I'm feeling like shit, and without my daughter here to make sure I don't fall down it wasn't a good plan for me to go. (This is also a problem for another day - I am increasingly unable to complete tasks by myself, and Kitty shouldn't be expected to be my caregiver, especially since she cannot claim a benefit herself (long story) and is planning to go to university in the coming year). That's likely to happen a lot. I could, potentially handle a monthly call - even a monthly skype - or I could handle an email catch up with the case manager, that would be ideal. All of these things would also be considerably less of a waste of a case managers time, as well as being far less of a stupid hassle for me. Until my medical certificates start saying, *can rehabilitate back into the workforce* rather than *totally FUBAR, forget it* these little catch ups are basically going to involve me saying, "yeah Hi, I'm still super fucked up - how are you?" and answering the question "what can we do to assist in your recovery?" with a series of things I know full well they are NEVER going to agree to fund. And "maybe we could help you find some training courses?" with "I can't afford them and also they are more or less the same as going to a job so why would you think I can do that?" And then summing up the situation with, "Find me a job I can do from bed, on my computer, that doesn't have an attached sense of urgency because there are days when even jabbing away at the keyboard is too much, and I am totally on board. Fund me in training for a higher grade of job I can do from my bed, on my computer, without harsh deadlines, and I am totally on board. Otherwise, see you next time, I'll let you know if I miraculously recover from this incurable permanent condition". Merry Fucking Christmas. 

So, under the pretence of *protecting the taxpayers investment* hundreds and thousands of hoops are jumped through by people who for a myriad of different reasons aren't very good and jumping through them. Money and time is wasted on things that could be down far more simply and with less looking down noses by bypassing all the dragging beneficiaries into pointless meetings, making them fill in pointless forms, making them look at EVERY job, whether it's actually even remotely suitable for them or not. The system could very easily and sensibly be streamlined to make it both more cost effective and less demeaning. 

The problem is I don't think the government sees that both those things are wins for them. i think the government WANTS beneficiaries feeling miserable about themselves, being forced into work they are unsuited for and always on the brink of losing their benefit. I think the government likes the air of futile panic that stinks up the average WINZ office. I think they think the money spent on pointlessly making things harder and driving beneficiaries into desperation is money well spentI'd be happy to believe that our government is the Evil Empire but JK does not have the cool to be Darth Vader.

Peace. Out.  

Monday, November 23, 2015

Self Awareness; not overly useful in hindsight


I am aware that there is this thing I do: OVERSHARE. I'm sure many of you have been there. Sorry about that Chief.*

My social boundaries exist very far from my person. So far that even I'm not sure where they are. The upshot of this is sometimes information just kind of spews out of me, particularly if I'm shaken up about something - because if I'm upset I often forget to roll a sanity check before I open my mouth.

Interestingly this has in the past lead to two distinct and opposite effects. Sometimes I overshare and the person or persons on the receiving end are so freaked out they, fairly understandably RUN THE FUCK AWAY. But other times I gain a friend so solid I will never have to question their place in my life. Sometimes the first thing happens and then the person wanders back going, "wow that was pretty fucking intense" and then slots themselves into the second group. 

Basically there are very few things from my life that I am unwilling to share if either I think it will help the person on the other end of it better cope with their own situation or if unburdening myself is something I need to do right now. The second thing is why this comes up right now... because I really really really need to remember to not target mere acquaintances with that second thing. What was that phrase I used in another blog a million years ago? Verbal ejaculate! No one wants that all over them from a near stranger. 

I had a tough weekend, with several friends being in very bad headspaces at the same time, and I ended up sharing information about several terrible times in my own life as, well more or less as - "hey, I know where you're coming from; please understand me when I say it is super important that you deal with this immediately" examples. It's all very well to tell someone that you are concerned that they might hurt themselves, and please please please get professional help - but from experience I know that being in that place it's bloody hard to see that anyone even wants to help you and even harder to see that people around you really might totally understand what you're saying. I recognised some trigger phrases in what one of these people was saying, and recognised that she wasn't really taking in what any of us were saying to her. I could also read between the lines that she had been understating the situation to her medical professional. So I told her about the day that I went from feeling vaguely shit about the universe, to having a fully planned exit strategy in place in the time it took to end a phone call. And what I did next, that almost certainly saved my life. After which I went into a quiet spiral of *ohfuckohfuckohfuckohfuck*. Because those memories aren't particularly pleasant ones. It got her to call a suicide hotline, which she had been thinking about but not doing for ages, because she didn't trust the idea of them, she didn't imagine that they could say anything that might help or do anything to get her out of this dark place. Seeking help is so insanely hard to do when you've stopped believing you're worth anything. 

And SEE here I am telling you guys about it.... because I need it out of my system and you guys are the best. Also you can just the fuck not bother reading this (I probably should have mentioned that earlier ;) ). Sometimes I just need to spew it all out of my system, putting it here - it's somewhere. Not in me. 

Back to the point at hand. I have a tendency to make knee jerk reactions to new people in my life. Every now and then someone walks in that I just instinctively trust. Instinctively take into my heart. And then sometimes I completely forget that they haven't had the chance to form the same relationship (or run the hell away). Matt, you know what I'm talking about. Jesus you poor bastard, I threw you right off the fucking deep end. 

So I end up running off at the mouth to them, when I hit a wall. Like a total fucking womble. 

That one brilliant piece of tremendous LUCK in my life, finding KAOS before I lost myself entirely. Lead me to a bunch of people remarkably resilient to my special brand of douchebaggery. To people I can do that second part of the equation with - I can tell anyone **anything about myself more or less without distinction, but if I'm upset I can ONLY talk to someone I trust implicitly. So, I guess the upside of me going off at the mouth at you is that you can know that I totally trust you. Also if I am happy to put BOTH arms around you. I trust you. And that put's you in a pretty damn SMALL group. 



Peace. Out.

*It's time to play "name that reference"
** in so far as I am yet to find anything I WON'T talk about.