Emphasis On ‘A’

Emphasis on ‘A’

Then, for the first time really ever, I dated. I dated a guy, the emphasis on ’A’ and like usual, some bitch had gotten to him first and he was more Roadkill than anything else.

We did the date thing for whatever and I had, had my diagnosis of my AVM and didn’t know what life and treatment would bring, but I had hopes I meant something to him, more than nothing.

After a third date that was more about us being ‘friends’ and watching films at my house (because my house had a heater and a cat!) etc.

*Sidebar; Imagine watching ‘Blue Dress’ with a new boyfriend, awkward!

So, I set about solving the boyfriend’s issues, trying to be a supportive girlfriend, hoping he would do the same with my treatment and recovery.

Let’s do a stocktake: –

1. Alcoholic – fixed that. 🗸
2. Separated, not divorced. 🗸
3. Permanent Resident in Australia. 🗸
4. Support him parenting his daughter. 🗸

This is starting to sound really bitter, which I’m not. In reality, he had his plans and I had mine and his did not include me.

It wasn’t until after we broke up and he was moving out to interstate for work that I learnt his mother did not even know I existed.

So, lesson learned.

If he had loved me, he would have still been here, with me and lord love that child, but not being a co-parent with the family make-up of that family, I dodged a bullet. Really!

I would have given it a red-hot go but I’m lucky I didn’t have too.

 

 

Clayton’s Holiday

Clayton’s Holidays

There was a drink back in the 80’s and I has become part of Aussie Pop Culture references that crosses all things. The ad was for a drink (beverage) called Claytons.

It refers to it being the drink when you don’t feel like having a drink. A drink without being alcoholic. So, this is a post about a Clayton’s holiday. Get it?

About five years ago, I was with an agency that arranged holidays (group holidays) for their clients. I was able to and included on two holidays, which was really nice as I think it’s been about ten years since I actually had a holiday and even then, that was to Tasmania for two-three nights.

So, the group holidays work out to be only a half day drive from Melbourne and only away over night or two. The other client’s range in age from five (one client’s daughter) to sixty-five (maybe). There were two mini buses with wheelchair lifts on the back (two wheelchairs in the back of each) and usually a car.

I usually bags the front seat of the mini bus (I will do a polishing motion on my backside and one of the carers will effortlessly lift me and deposit me in my seat). Yeah, I do that sexual harassment for the ladies. But I won’t allow a male carer to man-handle the goods. (I’m not light these days, but one lady just effortlessly lifted me making me feel so light.)

Being on a little get away with a bunch of strangers and three or four carers means you have a polite but temporary family type experience.

I always pitch in to help prep a salad or something in the evening as we usually stay somewhere we have a shared meal where ever we stay on the first night, as most meals are eaten out.

The first holiday I went to we stopped on the way back to Melbourne at an outer Melbourne suburb for a lunch and a little adventure.

A friend lived there, so I suggested they join me, so I could catch up with them. Said friend had recently been diagnosed with something quite nasty. They are still in that honeymoon stage of diagnosis where they have had the sugar-coated version of their diagnosis. Goes something like this “OH, you only have 3 lesions…”

Note, privacy being maintained here, yeah. This medical condition is such that when people hear I have a brain injury, I tell them, “Hey! It’s okay, this is my bottom line right now. At least I don’t have XYZ.” Because XYZ is degenerative. It gets worse. It gets shitty. I just gets’ worse.

So, this friend joined my little group of holiday buddies and I briefly introduced them to the group. I’m going to say, I’m terrible with names and I’ve been around this group of people with disabilities now a few years, so in a little desensitized re: medical conditions.

My introduction went like this;

“Brain Injury, MS, Stroke, Stroke, Oxygen deprived at birth (Brain Injury) etc, etc”. And I finished with referring to one particular person in a wheelchair (of which there were five) but the last person I pointed to had the XYZ my non-holiday friend has. “That will be you one day” and they paled considerably.

To be continued

Twenty – Three

Twenty-Three

Today, I’m going to take everyone back in a time capsule or a time travelling machine to when I was about twenty-three.

Ah, good times, right? Well, we shall see. I’ll let you decide.

As you know, when I was younger in my twenties, I worked in nightclubs in Melbourne. Until recently, I thought I’d worked in clubs for a whole ten years, but when I did some ‘hard maths’ I realized it was only five years.

My club ‘work’ (it’s still the right team if my output of hours and efforts did not equal my income) was several day’s a week and as many night’s as 2-5 nights a week. Despite my best efforts, at one point I found myself without a roof over my head. I had been living with my older sister and when we finished the lease on a house, she found a place quickly and moved out and then I struggled.

Apparently, it’s really hard to imagine when I said ‘I don’t drink, so won’t becoming home drunk and vomiting’ and don’t lay around all day is not much of a sales pitch when promoting one’s self as a prospective housemate to strangers.

Having a good club network of friends, I managed to find a space on someone’s lounge floor for a small amount of money so I wasn’t out on the street.

These kids were younger than me and the meals I cooked and shared were the only meals I saw concocted from their kitchen. Needless to say, I maintained my day/night sleep deprived routine.

After a month or all of my house-hunting efforts and my day/night work routine, the kids I stayed with asked me to go stay elsewhere, as the landlord (one of the girl’s father) didn’t want me there.

On the Tuesday, my day routine of distributing night club passes, took me to Chapel Street South Yarra and Greville Street Prahan. I dropped into visit my sister, who worked in that area. She gave me a very hard time, that I hadn’t found anywhere to live.

I then ran into my cousin with her shopping bags of groceries. I was so happy to see a friendly face. I asked her to go get a coffee with me, as my sister had so upset me. When I saw her friendly face, I burst in to tears. When she went to put her groceries in the car and come back to me, the weirdest thing happened.

I got a splitting migraine and plus I peed my pants. What? I know!

Briefly, visited the café to use the toilet, then my cousin gave me a lift back to where I was staying. I made it inside feeling very seedy. I hadn’t eaten all day, other than my spirulina (for breakfast). The toilet was occupied, so I threw up on the carpet. What? Are you not meant to do it there?

Have you ever had a headache so bad you couldn’t make a simple decision not to throw up green spirulina on cream carpet? Yeah! It was that bad.

I made it into the toilet only to collapse on the floor, one of my temporary house-mates actually had to come into the small toilet to lift me and get me out, because I just couldn’t move.

Thankfully, they put me to bed, closed the blinds and turned off the light and with a little instruction from me they rang my mum.

To this day, when the shit hits the fan, I call my mum. Have I mentioned, I love my mum?

Mum was on the road within an hour to come get me. Back then, mum still living in my home town in the North East of Victoria. So it took her three hours to get to me and once I was bundled in the front seat with a bucket (that I don’t remember using) we headed back home for another three hours. I don’t recall having much to say all the way home.

Now, to be clear, at the time we put my migraine down to MSG food poisoning as it was and still to this day, THE WORST MIGRAINE I’VE EVER HAD.

I was bedridden for a week and I didn’t eat. I remember visits to a chiropractor most days and on one visit being muscle tested to work out what I could eat. One morning mum insisted I eat and she bought in some green grapes. Good, right?

Mmmmm, we arrived at the chiropractor’s office, not far from mum’s in time for me to fling open the car door and deliver those grapes onto his driveway. A woman was doing her gardening and commented I really needed to see the chiropractor.

One morning mum insisted I get in the shower, I remember getting into the small shower and just standing there unable to move. Eventually, mum came to help me. Did I mention I love my mum?

During that week, you might wonder whey my mum didn’t take me to a doctor or emergency room? Yu know, those moments when you realise a ‘higher power’ (I refer to it as The Universe looking after me. I have few Catholic types who follow my blog) they will think it was odd but anyway. Every time my mum went to call the hospital or the doctor, they were engaged, so we got the message not to go.

I did notice my head hurt less when I rested it on one side less than the other. Weird right? After a week, I all of a sudden felt a little better, at least good enough to eat something. What did I eat first? I’m such a wog, Salami, then Cabana, OMG I think mum thought I’d be sick, since I’d not eaten for a week.

I remember being very slow to get my energy back, all in all I stayed with mum and my younger sister a whole month. My older sister visited once, insisting I was being lazy and to get my arse back to Melbourne to get a job, so I could find a place to live.

While at home, you might wonder if I heard from any of my club friends, since I would normally be there from opening (10pm) until the end (5am), I was usually out in those days from anything from 2-5 nights a week. One night, I started to my ‘good-byes’ to friends far earlier than normal and one guy asked me if I was dying. I’d had a cold, Ok. Can’t a girl go home early once in a while?

Correct! No one called me while I was sick to ask how I was. Admittedly, it was before the era of everyone having a mobile phone.

Interestingly, the Universe really was looking after me while at the time we thought it was MSG food poisoning, after my diagnosis, when I was thirty-four, one of the specialists I went to, was in Sydney and the young lady (who actually hailed from Melbourne) suggested back when I was twenty-three, I likely had a bleed or a leak from my AVM.

My mother and I agree if I’d been diagnosed back when I was twenty-three, the hospital I was born at in the country, would have had the attitude of ‘No Worries, we can fix that’ and it would have been the worst experience of a guinea pig ever.

Ironically, when I collapsed that day back in Prahan when I was twenty-three, I wasn’t very far from ‘The Alfred Hospital’ which is eventually where I had my radiation treatment. Mum and I both agree that I was diagnosed at the right time, because the early treatment options that were available to me came to the Alfred and was covered by Medicare.

So, all in all, I think I was really lucky and my sister, to this day has no idea how serious it was.

Torture – Part 1

Torture Part 1

There are some posts I put off writing, I’ve had this on simmer in the back of my mind for years and as usual, there are a million ways to address this one. It kinda follows one about the Neuro Angiogram, of which I’ve had two, of and I hated. And ironically, I’ve had two of these also and I hated both of these also.

Firstly, I should premise by saying 2011 was a rough year. Let me start by saying the issues started a few years earlier, but I didn’t piece everything together until sometime later.

By 2011, I had been living one handed for a few years, being fiercely independent and with the ability to keep doing some things one handed. With the encouragement of my physio and OT, I kept doing “things” one handed, ie) lifting a 10kg bag of kitty litter and taking it from the front door to the back door, so it took pressure off the boyfriend. (Yeah! I know, I had one.) Helen now don’t got one. I’ll get to that, it’s on the list.

Now, where was I?

On the 6^th January that year, I lifted my small suitcase from the floor to my bed. It was full of my laptop, hard drives and other tech stuff and I didn’t want my mother to lift it, so I did it. In hindsight, that was the straw that broke the camel’s back.

Weird things started to happen like, it hurt to sit, but not my “butt” I had shooting pain down my right leg. Reminder; my right leg is my good leg, really don’t need anything going wrong with my good leg. I couldn’t sit on the couch in the evenings and watch TV.

Trips to my GP, had new medication added to my diet. I think we started with muscle relaxants.

DID NOT HELP!

Can’t recall now, what medications followed that, but I started getting Ultrasounds to my legs and other things.

What felt like forever, later we found what worked. The Silver bullet came in the form of Oxy and what I refer to as ‘Oxy, Oxy and Oxy.’

Slow release, short release and don’t bother me with that because it’s just not going to help.

Oh yeah, eventually the diagnosis was a disc bulge and another crappy side-effect. I felt I needed to pee. All the time and of course if you have ever been on any serious Opiates, you know you have the added trauma of Constipation. Super!

So, as part of the process to get better, is medication. Some people can walk it off and it just gets better. Some people require surgery, but while brain surgeons (Nuero Surgeons) do brains and backs, they prioritise brain.

Now my happy place that year was lying on my bed, my laptop now lived on my bed so, I just spent more time there. My happy place with Opiates, was 20mg of Oxy Contin during the day and 10mg at night. If I had to go out, I would take 5mg of Oxy norm, it works fairly quickly, but gives you only three hours of taking the edge off.

I caught the taxi to my local appointments, because I struggled to even scooter to them.

My ‘shrink’ I saw over the phone, paying using online banking. I saw my GP while lying down on his bed, you know, that table thingy? So, saying all of this, it was a long year.

The ironic part was all the medical people I saw that year, couldn’t diagnose me, until an MRI told me what the cause to the pain was.

After diagnosis, a lovely Indian woman who dropped over, I told her I had a disc bulge and she asked “do you have pain down your leg?”

Seriously.

Diagnosis

Diagnosis

“Now tell me, what’s wrong with you?” a shoulder specialist asked me once. You might immediately think my shoulder, correct? Since that was his specialty.

But there’s that thing all medical personal do when ‘assess you!’

To which I replied “How long have you got?”

But first I must digress.

In my early 30’s as you may have read I was working as an Admin Assistant for an NGO. You know, “Admin” it’s that term meaning you do EVERYTHING that is delegated to you and some for really crappy pay.

Oh, I loved that job! I was really good at that job!

Anyway, work became stressful (another time) and my left arm which had always “worked” lost some of its strength and dexterity…

I struggled to touch type, so I hid this by typing very efficiently one handed and tried to hide my weak left arm by sitting my elbow on the desk or in my lap. If I answered the phone left handed I really knocked myself out putting the phone to my ear…

I had a colleague who had a son my age with MS, No! I don’t have MS (Multiple Sclerosis)

Honestly, I think that would be worse than what I have…

So, everyday Tony, my colleague would ask me if I’d seen my doctor yet?

What? I don’t have a doctor…

Actually I had a GP, whom I didn’t like much, so I got a new GP not long before and made a list.

On the bottom I said list was my left arm! I explained the occasional weakness that I’d had for years that came and went…

His response was immediate and he didn’t seem to need any further explanation.

He stated “Ok, let’s get a CT scan!”

I was a little surprised. Booked the appointment not knowing what to expect and went one morning on my way to work.

They injected ‘contrast’ into my arm and when I loaded myself up with all of my bags and carefully navigated the stairs to get back down to the ground floor. The technician watched me very carefully…

I could do stairs rather easily back then, but words from the wise, when the technician watches you like a hawk, he knows something already that you don’t know!

And it’s probably not good new…