Acquired Brain Injury

All posts tagged Acquired Brain Injury

Dear God

Published July 29, 2016 by helentastic67

 

stumbling_block_-_how_much

Dear God!

Dear God! And I could say ‘Dear Fred!’ but that might be confusing. Sometimes when life is too hard and you have thrown me one too many hurdles in life and I can’t take it anymore. And all I can do to make my point is to hold people to ransom until I am heard and someone helps me!

Anyway, this was not how I wanted my next post to start, but it seems the best way to tackle the topic of some ‘shit’ that went down today.

Some people may think my disability is not as bad as theirs or be irrelevant because it’s just a brain injury! Or because I don’t seem physically challenged by my disability! So to explain;

Monday, I found a new ‘fucked-up’ way to pull muscles in my back and all I was trying to do was lie down on a massage table face down! Yes! Really!

While I do manage to get out to appointments one way or another and I manage to get myself home usually in one piece, it comes at a price and can take its toll and definitely more of this “shit” later because right now this is not my point.

I still need to advocate for myself at times and when I’m smart enough to know I’m getting a raw deal from my ‘Service Provider’ and they should be doing better. I dread to think how they treat others and that’s when people like you ‘God!’ don’t have the ability to cope as well.

This is why I advocate for people with A.B.I’s.

Today, while at a Brain Injury Self Advocacy Group’s monthly committee meeting one of our new members ‘Fred’ (we will call him) burst into the room just as we were finishing.

Let me premise this by saying; Fred was having a much shittier day than I was up until that point and his multiple A.B.I’s proving to be far worse than mine. He was very angry and had been to court, hence missing the meeting.

He blasted us with random facts about his situation that we obviously needed to know. But, for all his many issues we work largely as a referral/networking service and while we tried to recommend some Advocacy groups. He told us they had been less than helpful and that is me paraphrasing what he actually had to say about them. What he should have said was they had been less than helpful to him and I imagine if he dealt with all his situations and troubles in life the same way, he informed us today that we were not of much use to him.

After about 15 minutes of dealing with Fred’s fury, I had to leave because I started to feel sick. I really respect Russell Brand when he has been known to say;

“I don’t have a drug problem; I have a dealing with life problem!”

And that is the problem with Mental Health and that is when dealing with Chronic Medical and Health issues, the thing, the thing & the thing that lead to the serious mental health issues it’s hard to cope with the shit that happens and how to deal with them, so the already fragile mental health doesn’t get worse.

Now lastly, I don’t know that everyone followed this post and while the intention, the meaning and the conclusion, my point or at least a little out of it.

Now for a cuppa T.

stumbling

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.

The Rash

Published July 18, 2016 by helentastic67

Rash 2

The Rash!

Trying to get to write about the thing and the thing and the thing, but I’ve been talking to a friend today about depression. So the thing can wait.

I suffer depression and anxiety. For me the depression has come and gone throughout life depending on the ‘shit’ at the time I’ve been dealing with. I imagine from 9 years of age and un-diagnosed at the time. And back then, shit just happened and you just got on with life. Keeping in mind that was circa 1980-ish (because I’m old!).

These days, my depression and anxiety has been the icing on the top of the cake on top of several other medical conditions.

But I manage to paste on a smile when I leave the house and I can problem solve like the best of them and laugh and joke with my friends (Carers).

It doesn’t mean I’m not depressed; it just means I cope better.

So, the analogy I used for my friend today who was sad that his depression had returned that depression comes and goes. It’s like that bad ex-boyfriend or that rash, it comes and goes…

There is away depression has the power to suck the life out of you. It creeps up on you and can appear without you even being aware it’s your new best friend.

I prefer not to write when I’m really depressed. Because it’s disastrous and you can’t see the forest from the trees and even common sense decision making is beyond me.

I prefer to put on some loud obnoxious music and not just to annoy my neighbours.

Music for me seems to charge the energy in my home. Then I start to get motivated to do things, cooking, organise, whatever.

So, that moves more energy and then I can see progress and then it’s an improvement.

Depression can affect people who have chronic medical conditions.

It can affect people who seemingly have everything positive to live for.

Sometimes, it’s that one shitty thing, moment, thought that can put people over the edge.

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!

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…

ABIAW

Published May 27, 2016 by helentastic67

 

North Melboure coloursABIAW

In Australia, were pretty organised in educating people about the dangers of causing one’s self injury.

Particularly when it comes to self-inflicted brain injuries or violence related Brain Injury.

Oh no! I used another acronym!

ABIAW stands for Acquired Brain Injury Awareness Week!

The first event I went to was about 5 or 6 years ago. The Service Provider hired a venue. The North Melbourne Football Club.

They arranged catering and a door prize. I won a North Melbourne Football Mug.

I do not do football – Grumpy face. And they invited some guest speakers and all of their clients and families (some anyway).

That day, rather than go up to people and say Hi!

Nice weather, I generally sought people out by asking what their ABI was…. I know sounds rude, but we all did it…

The only difference was I started by asking “so stroke” Partied hard and took too many drugs?”

Luckily they laughed and in turn asked me if I’d had a stroke, I then explain I’ve not had a stroke, it just looks that way…

I always decide ad hoc how much I bother to explain to people, because regardless of what I say, I know they are still thinking she partied too hard and took too many drugs…

Acquired Brain Injury

Published April 15, 2016 by helentastic67

Aquired brain injury 1

ABI

Okay, you have probably heard about it and even noticed I refer to having a brain injury, but have really not had me admit it or explain it. Until now…

This is it! If you don’t know for sure ABI stands for Acquired Brain Injury. There are others like TBI – Traumatic Brain Injury and I think there should be another acronym of which would be DDK – Doctors Don’t Know! More of that in just a second.

I have avoided doing the whole “Once upon a time, into my blog like most other blog’s for several reasons.

  1. My story would start at the age of 34, when I found out about something I’d had for more than 34 years.
  2. Many people get grumpy about how I now “Bang on” about Brain Injury, because I now know I have one! But they were always happy in the past when what I would “Bang on” about made them money. At least I have a Brain Injury to be Banging on” about.

But in reality I have a uniquely shitty ABI because DDK how it happens. There is no specific finding thrown at it to cure it!/Research it and the “cure” in my situation has left me looking like I’ve had a “stroke” without the funding and assistance.

But all the issues and negativity because people look at me like I did something to deserve the issue I now have.

I actually had a lifetime of some very subtle “things” that were easily dismissed until I was in a stressful work environment at 34 years of age where I was being bullied and when I was working with an older gentleman who had a son my age with MS (Multiple Sclerosis)..

He noticed I had a weakness in my left arm, I thought I was camouflaging and started to pester me to see my Doctor.

And so, I finally did go see my Doctor. The last thing on my list was that I had a slight weakness in my left arn.

His instant response was I needed a CAT Scan.

I got one and had my first experience of “Contrast” or Iodine” but again, more of that later. You will love that story!

So a few weeks later after my scan I returned to my GP’s office.

That next visit has become infamous. One of those days when you don’t remember anything else that happens except that one moment of clarity you will never forget.

My GP held my scan up to the window as though like a lightbox and pointed to one side of the scan stating “See this side?” “This is normal……” Oh how we love that term.

I could see the other side looked different, darker.

I kind of gave a “Yeah, what’s going on with…..?”

And he pointed at the area of the other side and described a cluster of arteries and called it an Arterio Venus Malformation or an AVM for short.

I confess to say, I had no idea what it meant or how it got there. But to say I’d had a pretty shitty week, having lost my job, I didn’t know what it meant or how it might affect my ability to get another job.

I also confess to say, I cried. Dr Chris made a move to comfort me (Lord love him) and I explained the shitty week I’d had.

Well this is not over, but I felt inspired and now it’s 3am so I really think it’s time for sleep.

Meanwhile, feel free to Google AVM, I always tell people it’s the medical one not the IT related one.

Administrator!

Published April 8, 2016 by helentastic67

Office-Administrator-Job-Description

Administrator!

So, sometimes I want to post a blog, just so I can tell people of my accomplishments. And I can but by the time you hear about them a month or more would have come to pass, but it’s the perfect Segway to me telling you about my process and intern my wonderful administrator.

My process starts with me trying to practice “mindfulness”.

Sometimes I’m waiting for the right thing to happen to trigger a post coming together, just right in my mind. I like to write with pen and paper. Old school.

Then, because of my many issues or deficits, whatever I have been stuck with that for about 5 years that I’ve been planning this blog and talking about it.

And I guess it’s taken a while for a few things to fall into place. Admittedly I was slow to get on the Social Media thing, and a bit longer to be introduced to the right person.

And that is how I met my Administrator!

She is my wizard who made my blog become a reality. More of this hero in a moment, but first I write long hand, copy and post about once a month. So far (Scanned once and emailed) and send to someone in Sydney who types my blog posts up, emails to me for final editing and then after she does some final searching for pictures and some networking “she posts”.

And she be my friend Noelle. And I’m not sure how much I’m allowed to tell you about her, so will pause here…..

Sometimes, I want to brag about the things I’ve just achieved, one-handed, but now there is no time.

I often debrief via text to check in with him.

Sometimes they go something like this;

“Had Chiro and Acupuncture today. And if I had a husband I’d be all over that as well!”

Over time I will tell you of my friends. I hope you will understand more about me and what I value by the friends I keep.

Also don’t be confused by the dates on my posts. I am a prolific writer and have been preparing and writing for this blog for years, so at times I will pull something out of my archives.

If and when I do it will be because it’s still current.

Or I’m still really angry about it….

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!

 

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