Today’s Lunch – 17th October 2018

 

Today’s Lunch

Good Mental Health Day

The wisest words I can share from my shrink! (Cough, just sounds cooler than psychologist) that I can share with you are these. “I don’t have to tell you how to suck eggs!” This is the advice she gives me when I debrief her on how shitty the world I survive in with a disability. I can already hear her saying this to me when I next see her.

But why? I hear you ask, you should recently have read about the world of funding in which I must navigate and survive? This year I’ve been trying to decide when to go with a new case management organisation.

My bad, that’s a dated term. They are now called a Service Coordinator! I had just been handed over to a new one mid-year. I met with her a few times and decided it was time to move. I am funded 2 hours a week to help coordinate my services. You get that I do that right? (It’s a NDIA term, just go with it) according to my new C.M. (shuddup! And go with it, it’s shorter!) told me it was the equivalent of an 8-week review.

I’m overdue my review for my next NDIA funding plan, when I get to November 6th the current one ends and so do my carers and anything else I need.

I met my new CM, and she was really awesome. She told me she was going to get me out of this habit of calling her a C.M. I told her that was fine because I would eventually stab her to death with a fork! Yes, she laughed. so, I’ll now refer to a case manager as a Service Coordinator or a S.C. Try to keep up.

This cool S.C had seven funded hours to get up to speed, book me an appointment for my review and meet with me a few times and be there to advocate for my next plan. In layman’s terms it’s a lot to do in only seven hours.

Have I mention my theory that government agencies and welfare services are not actually about providing service? It’s about making you run around a wheel until you give up and get a job. If you can, or you get screwed. Um, have you met me? My names Helen! I’m thinking about changing my middle name, to screwed!

And I say this because I got a call from my (cough) S.C yesterday telling me she was handing me over to another S.C. We meet Monday! FFFFAAAARRRRKKKK! Not happy Jan!

Again, had no water this morning, by the time I finished with my carer I cancelled my stabby appointment as I would have been late. Definitely have to go out to get some food for my lovely Caroline as she’s driving me across town tomorrow for my Neuropsych appointment. Did I mention neuropsych appointments, not just for crazy people anymore. In short, the neuropsych test is about working out what parts of your brain have deficiencies or problems doing what they are meant to do. Can’t test too smart as I’ll lose funding, can’t test too slow or I’ll get heavily medicated so I’m bombed out and don’t get to make my own decisions anymore. Oh, oops. Did I say that out loud?
Looking forward for a quiet week, when does that happen?

Running out of things to make with lemons.

Cheers,
H

Today’s Lunch – 27th June 2018

Today’s Lunch

Good Mental Health Day

Nothing dramatic this week. Got a cold. Not happy Jan!

Usually my Wednesday is the only day that I can expect to run smoothly. If I see Young John it’s a big win! If not, it’s not a disaster I just jump on a tram but given even the smallest change I can get creative and adjust my plan of attack. After years of my standard lunch/punchy/stubby day things are soon about to be shaken up.

Guess, I’ll treat it like an opportunity to stretch my brain muscle. My brain already hurts just thinking about it, I guess it’s good I’ve got a few weeks to get ready and consider all my options. To be continued……….

Meanwhile, today’s lunch! Think I’m in my pizza faze. Don’t know what it’s called but it’s got a nice slice of buffalo mozzarella on top and medicine!

 

 

 

 

 

 

 

 

 

And because I got here early, I have my ‘own’ office.

Fingers crossed no one comes in with grizzly children or first world problems. Had to tune out a local woman discussing her renovation woes with her friends. She was discussing how she wanted to ‘borrow’ space from the laneway next to her house. Or maybe it was the ‘air’ above the laneway, I know! Can you feel my eye roll from there? Also, I think the photos on the wall is very much what would be at my Nona’s house if she were still here.

Cheers,
H

Crazy Lady Hormones and AVM

Crazy Lady Hormones and AVM

This weeks “Today’s Lunch” has been postponed until next week.

This post is going to be exactly what you imagine it will be. So, if you are a guy (not sure I have many male followers to worry about) but if you’re still reading, strap yourself in!

My periods started at the usual time as most girls in my early teens. What we never realised is that those special blue pills that stop us killing men? (commonly known as Naprogesic) are blood thinners.

You add ½ a dozen of those, every month. Something probably happened more often than I realised, but didn’t realise exactly what, it meant was that in a perfect storm I was probably lucky I didn’t have a stroke.

One morning not long before my diagnosis I recall a bitterly cold morning, getting up to go to work. Conveniently a day Aunt Irma (IT Crowd reference) was coming to visit.

I conveniently had to wash my hair that morning and being so cold I made sure I had it hot.

Turns out water also makes your blood thin. When I had more blood in and around my brain, than normal I would get dizzy and I mean I was dizzy, I recall drying my hair a little with a towel and putting it up (in a bun that I still wear as my style) I recall drying and putting pyjamas back on, setting my alarm and going back to bed to sleep it off. I woke a few hours later to restart my day.

When I was finally diagnosed, I was told emphatically NO MORE BLOOD THINNERS!

After several years on and off the steroids (Dexamethazone) for brain swelling, sometimes my period just didn’t come for 6 months or more.

About 4 years ago, I actually went on the pill, because once a month I was an emotional mess. Rather than the previous five months, I just wanted to kill someone. I traded up to a whole day where EVERYTHING upset me EVERYTHING MADE ME CRY.

Get up, get undressed, cry! Get in the shower, cry! Get out of the shower, cry! Get the point?

Not let Helen take her second coffee in the cinema when she’d previously taken her first coffee in. Cry!

Have I mentioned, you don’t mess with me and coffee? No seriously!

About a year ago, I came off the pill to find out if I was menopausal. Yeah, that word. I was only 43 years old and no I wasn’t and still am not, to my knowledge.

Turns out it was probably a good thing I didn’t meet my soul mate (yeah, I believe in that crap!) because I might have wanted children. I always imagined I would, but if it had I might not be here at all.

When you’re pregnant ladies. (presuming only the ladies kept reading) your bodies blood volume doubles. My AVM would not have coped. If my child had made it (there has been no child) I might not have made it.

So, babies, right? Not for everyone.

Privilege not a right.

Anyway, a lot of background to get to my point!

Had a bit of a tummy ache this week. Would have been mistaken to think it was Aunt Irma and except she visited last week for all of about 12 minutes. Felt that way anyway. Think I sneezed a few times and it was over.

Meanwhile the app on my phone last week had told me, it was due in six days, on the 2^nd February, 2017 and its currently early October.

Don’t know when you’ll be reading this but my point ABI/AVM/Crazy Lady hormones.

Not happy Jan.

Oh, and with the no blood thinners, it’s hard, I just upgrade to Opiates – Oxy Norm!

The End…