Hell on Wheels

All posts tagged Hell on Wheels

Radiation

Published July 25, 2016 by helentastic67

Face mask 1

Radiation!

For me I’ve been aware of everything that
has ever happen or
been done to me. I’ve been part of the decision making and
conscious throughout
treatment etc. Some people don’t have that
luxury.

They might be in a car accident or have a
stroke and they
only become aware of this when they wake up in
hospital. Or even after they wake from a coma. That would be very ‘Ordinary’.

My treatment was only about 30 minutes every
day over the
course of about 2 ½ weeks.

Mum and I caught a bus across town to my
hospital and within
an hour mum and I were on the same bus heading
home.

Day one! Turned up to wait for my
appointment.

Think it was about 8am! And it wasn’t long
before a nice
nurse was standing in front of me with a medicine cup held up
with a little white pill in it.

I’ve never been one to just reach for
medications and
considered I wasn’t sick, I was here for
treatment. So, I questioned the need for this medication.

I looked toward my Specialist who was the
Radiologist/Oncologist
who just happened to be coming out of the consultation room
with other Neurosurgeons,
etc and I gave him an appropriate questioning look.

And that was the first dose of the steroid
‘Dexmethazone’ I’ve
ever had.

The treatment was delivered with me lying on
a table and my
head bolted to it with a mask.

This is someone else’s mask (mine was
destroyed) and after the
treatment the mask would leave an itchy honeycombed pattern
across my forehead. (Sexy)
that would take some time to go away. Making me very
self-conscious.

The first night I recall I didn’t sleep. I
may have managed to
get to sleep for an hour or 2 before the alarm went off and
I had to get up and
repeat the process…

Face mask 1a

Day two! Of my treatment the little pill was
presented to me
again. And I asked if I really needed
it?

I explained I hadn’t slept all night. It
was a precaution for if I suffered any brain
swelling. As I had not had a headache after my first treatment I managed to evade more steroids during my treatment faze.

That night, no steroids, slept like a baby.
Overall the
treatments were no drama what so ever. I was very
tired.

Didn’t notice anything unusual until a few
days after my
treatment ended.

At the time I had a boyfriend and some
weekends we has his
daughter stay with us. She was about 4 years
old!

My scalp had been itchy and as it was a Sunday
morning I took
my hair down to wash it and found some mattered bits at the
back of my neck. I
brushed my hair in the shower when I had conditioner in it.
This has been my
practice since I was about 16.

Cure

Published July 22, 2016 by helentastic67

Face mask 5

Cure!

So, let’s get to the ‘thing’!

And I’ll premise it by saying, sometimes its good time has passed because I cannot get caught up in the details. Maybe.

And I can streamline the “thing!”

After a period of seeing a few different Neurosurgeons and a period of time thinking I would have to find money to go to Europe to seek treatment because my AVM was deemed surgically inoperable. I was referred to a hospital across town and it seemed the only treatment I could have to ‘fix’ the problem had come to Melbourne and was covered by the Public Medical System! Yeah!

My AVM, still inoperable could be treated with radiation. Asked what to expect?

In simple terms, I was told I might lose some muscle tone, which I was amused by because it told me they assumed I had muscle tone. I thought I had better get to the gym and get some…

They told me my hair would “thin”.

To be clear my definition of thinning and theirs are completely different.

And they asked if I liked reading? Because I might lose some eyesight.

On the upside, I would potentially obliterate the risk of 2% a year I might suffer a stroke, bleed or worse. I’m not a gambler however if it would ‘fix’ the AVM and I would be able to  illuminate the risk of a bleed, stroke, possible death, then my mum and sister were on-board to have the radiation.

What Next?

Published July 11, 2016 by helentastic67

Attitude with lbp

What Next?

So, after diagnosis, you generally go through a stage of research and asking plenty of questions and travel to see different people and in my case getting a new job!

I recall reading a blog post of a guy in Sydney.

Because the arm is a potential for a stroke, aneurysm or plenty of other things one post comes to mind. This guy in Sydney wondered if he should be wearing a bike helmet around the house to protect his head or bear-down when going to the toilet.

You can appreciate how this stayed in my mind.

I think the first serious thing I did do was I stopped taking blood thinners (because after 20 years somehow it would make a difference?) So, no Naprogesic, those ‘Special blue pills’ that stop us killing men every month!

Was not happy!

To be clear, I DID NOT COME UP WITH THAT TERM, BUT I WISH I DID!

I recall one day at work surrounded by women and this one, an older woman asked me if I was okay.

They were aware I had my period at the time and had mentioned I was going to work quietly at my desk without moving around too much.

Ironically, I remember my response to her very clearly.

I indicated my belly button with my hand and stated I was fine from there down but my head was swimming!

So, no more blood thinners!

Don’t Get Too Excited

Published July 4, 2016 by helentastic67

HC_High_Rise v Townhouse

High Rise Versus Townhouse

Don’t Get Too Excited

I was offered some public housing this week! Yeah! Yes, but don’t get too excited. I’ve been offered some previously. Even more than once! I love the excitement and enthusiasm they have when they call.

And usually when they’re telling me all about the fully modified bathroom and blah, blah, blah! And I usually cut them off to ask “Where is it?”

On that occasion I was met with surprise. I was told it was in Broadmeadows. Now, I know 3 people these days who live in Broadmeadows and only one of them I would call a friend and I rarely see her even.

I know the name Broadmeadows sounds lovely and picturesque to those on foreign shores, however if you knew me in person you would agree with me when I say;

I wouldn’t last 5 minutes in Broadmeadows. I would die! Or be killed or kill someone!

Anyway, I digress but before I move on I’ll say, it would be useful if I live somewhere out of my comfort zone, I didn’t to change every single link to my community support network just to start again. I’m not changing my GP ever! Or my Chiropractor or my Beautician. I don’t drive, so spending all the money I save on rent catching taxis! It’s counterproductive.

But even being offered a place in that area told me this organisation wasn’t doing their job properly. He had not read anything bar my name on a list. I have never put down on any form that I would be even open to the idea of living in that area. (They are meant to keep you close to your services so you don’t have to start again. Don’t be bullied by them)

So finally this week I was offered some housing in a different area, by a different organisation for the last 3 or so years at this point with Case Management and short holidays etc. And I’m on the list for housing.

And the person now managing this area was briefly my Case Manager.

When I get offered something, it’s good to at least go and see it. It’s good to not go alone.

I put it out to a friend who actually spends time with me and around my home. She would have a practical eye of what’s important to me when choosing where I would like to live.

What would need to come with me (fur-baby!) and what I need to keep me because it make me comfortable (my bed!) and what settles my mind and makes my heart sing.

And she understands it would be counterproductive to move into a tiny box and put all my belongings into storage if that makes me want to kill myself or others.

Then I asked my sister to come. She thinks I should take the first thing that’s offered to me because she thinks that would solve all my problems in this world!

Now let me say, that ship has sailed! That ship is in Fiji already (thanks Gilmore Girls for that line!)

My sister drilled me with plenty of questions.

Can I take my cat? Probably not!

And all the others I let wash over me.

I was seeing my Case Manager in a few days so had planned to ask him.

Turns out, the apartment on the 7th floor across from Victoria Markets (no thanks!) is practically just a bedsit! The kitchen a kitchenette!

What do you cook in there? Toast?

So, there’s much micro-managing me from a distance with little thought to my good mental health and then there’s people not reading my file to notice I’m approved for a 2 BEDROOM apartment etc.

And lastly, it’s my opinion that Public Housing in this country is all bulk built for Boat people. Tiny, tiny one bedroom apartments and bedsits! And I don’t have an issue with Boat people so for completely humanitarian reasons:

Let them in!

But this blog is not about them, so for every one of those apartments they build, why aren’t they building for the people who are already here???

Oh! I’ve had enough!

To Be Continued…

Pop Quiz

Published June 17, 2016 by helentastic67

A-Life-Pop-Quiz-480

Pop Quiz!

Because life is short!

So, today I have a quandary…..

My carer arrived and managed to get it halfway up.

Now, it’s towards the end of the day and I’m wondering if I should put it down.

They have replaced one already while I’ve been here.

They have had to replace many things because the unit is old and everything is past due to be replaced.

I rang the Property Manager who I imagine left a message with the Landlords. They live close by and probably saw the problem was solved.

I imagine I’ll be calling again next week!

What am I?

That’s right I’m a blind!

I know, I can be a bit naughty!

Noelle asked what was wrong with it and told her it was just old…

Stroke

Published May 30, 2016 by helentastic67

brain-stroke

Stroke!

Anyone can have a stroke. Young or old, unhealthy, healthy, smokers, non-smokers. You get the idea.

So we don’t say to young kids who have had a stroke, that they partied hard and took too many drugs do we?

I worked in pubs for all of my 20’s.

They were Alternative Clubs, by which I mean musically. I was a promoter/host/distributor.

Back in the day, before smart phones, when you went out to shops in retail shopping precincts to see posters of upcoming events/parties and get a nightclub ‘pass’.

I was the only promoter for the Alternative Club scene who had a retainer.

I spent several days and a week hitting the streets and sometimes up to 4-5 nights, all night out at clubs…

And I didn’t take drugs or drink, ok I barely drank. I drank Lemon, Lime and Bitters and occasionally at 4pm when my responsibilities were done, I had a Bailey’s on Ice.

I like to say, I was the most clean living person there with the exceptions of wearing leather and eating meat…

And despite writing this and explaining people still 1. Think I’m lying and 2. Presume I took drugs, even just once. NO, NO, I did not take drugs.

So you are probably wondering what happened?

Hopefully, by now you have Googled AVM. If not here is a link;

http://brainavm.oci.utoronto.ca/malformations/brain_avm_index.htm

Some AVM’s are small and operable. They are the ones that end up on those “real” medical shows. Example: Guy in his 20’s, studying hard, getting headaches, goes to hospital, they do a CAT scan.

Diagnose AVM, perform surgery.

Do touchy-feely tests in recovery.

Cured! Send home.

Helen’s commentary “um No!” Shaking head.

My AVM was large and deep (non-medical terms) mine had several arteries attached to it, feeding it and the nerve that works the left side of my body in the middle of the arteries.

They do say, if you can’t do something right, don’t bother.

So, yeah! Winning…

Priorities

Published May 18, 2016 by helentastic67

 

Helens artworkPriorities!

So, these days I use a walking stick when I’m out of the house. There is a term for this. I am Ambulant!

And for those who are unfamiliar, I live in Melbourne Australia. Melbourne weather is known to be very erratic. I think crowded house was singing about Melbourne when they sang of ‘Four Seasons in one day!’

During the winter months, it helps to layer up with clothes because being Ambulant you really need to prioritise.

Walking stick or umbrella?

I sometimes after 8 years get a look of concern from the same people asking me if I have an umbrella.

Here is pretty easy, the answer is I GET WET…

The next one I think is pretty easy also.

Once a month I go to a committee meeting for a self-advocacy group I belong to. I cruise through Degreaves Street and pick up a coffee (medicine) to get me through the meetings.

So walking stick or Keep cup?

KEEP CUP!

Without my ‘medicine’ I don’t make it through those meetings. I often get a migraine just walking through the door and with a room full of people with an assortment of Brain Injuries I generally want to blow my brains out, pretty quickly…

Dirty Old Lady

Published April 11, 2016 by helentastic67

Dirty Old Lady

Dirty Old Lady

A month ago, I realised I was a dirty old lady as the title suggest. I don’t know how this happened, but it was when I was watching a film. There was a scene where the male and female “leads” were together – Hello!

And she said to him “What is your tattoo of?”

I sat in my lounge on the couch and spoke to the room.

“Please God! Have to take something off!”

And off came the t-shirt!

So, either I’m a dirty old lady or I’m clairvoyant…

The Horrors

Published April 4, 2016 by helentastic67

that-awkward-moment

The Horrors!!!

It’s Friday! Yeah!!!

In my house it means, wash my hair (it’s all grown back now!) and go out with my Young Janice and we go shopping.

So I took down my hair while my Personal Care (PC) carer started her chores and got undressed. Turned on the hot water and…….

NO HOT WATER!!!!

I had a day off yesterday. As in no appointments so no need to leave the house. I had lots of laundry to do so I did 4 loads.

I had notice my hot water service in the backyard had been leaking (from the top) and it seemed to get worse as the day went on.

I had finally sent a text to a friend to rate how bad this was from bad to worse?

The suggested broken thermostat, maybe. Which sounds not as bad (expensive) as having to convince my Property Manger it’s my God given  right to have hot water and his job to take a yelling from my landlord if that’s what it took to have them part with the money.

I have those landlords who don’t want to maintain their properties, just want the money.

So, today my hair did not get washed and I had a bucket of water from the kettle and half shower.

Now, it’s the end of the day and a tradie ended up coming and he stated the Hot Water Service was Ka-put!

Glad he has to call my Property Manager, not me…

And the plumber is prepared to work on a Saturday morning because a weekend without a hot shower would just be a horror!

 

What is the Game?

Published April 1, 2016 by helentastic67

What is the Game

What is the game?

My favourite housemate ever and I used to have a game we used to love to play. Firstly, when I say ‘game’ don’t the wrong idea. And when I say ‘we’ loved to play, I mean I loved it and he dreaded it!

To give you some background this housemate, let’s call him “B”, and was very relaxed. He was a roadie and I considered him a pothead. He didn’t, but he smoked a spliff or 2 every night, but what do I know? I don’t smoke.

Ok, that’s the background out of the way.

Here’s how the game works. I would start at one end of the mantel piece in the lounge and touch a finger to the first ‘thing’ asking “What’s this and does it need to be here?”

“B” would pick up “this” item and we continued. Halfway along the mantle piece he would get ahead of me and remove all the things he knew didn’t belong there.

By the end of the game all that was left were the clean plates that sat in the middle and the Kuan Yin head.

My home is not always spotless, but I try to have a ‘home’ for everything. A tidy house is a tidy mind. I generally limit the amount of time I spend in environments that make me want to blow my brains out.

I can’t help trying to problem-solve and neaten things, because it gives me a migraine very easily.

More about my favourite housemate ever “B” another time.