Retrograde

Published August 12, 2016 by helentastic67

cat-bad-hair-day_12

Retrograde

Have a very bad case of procrastination now! And it’s partly because I just want to write about what’s happening in life now and partly because in order to have any of it make sense you need to know about what happened in the past. And as far as the post, I’m up to telling about some of the “hard parts”! So I guess were going RETROGRADE! Just for a little while!

And I might start by mentioning how important a woman’s hair is to her self-worth and her identity. And I mention this, perhaps (again) because it’s important…

My treatment, literally 20 (?) day’s ended on a Friday. On the weekend my partner (sorry, boyfriend) had his daughter with us and on the Sunday morning I got in the shower to wash my hair, so I could be presentable for an outing. We went to some typical ‘family’ adventure in Carlton and my scalp had been a little itchy around the hairline around the back.

I took my hair down, usually worn in a bun and I had matted bits. I pulled them out and got in the shower. I would normally brush it with conditioner in it. There was a corner part of the bath (shower over bath) where I could sit and as I brushed it, it kept coming out in my hands.

I don’t recall crying that day. I didn’t know how bad it was. I got out of the shower dried, dressed and put my hair up (wet).

Then I looked in the mirror!

No hair Helen

It was bad!

It was so obvious how much hair I’d lost, I had my boyfriend bring me my phone and I rang a friend. An old lady who lived in an old people’s village in the same suburb.

I had waited in the bathroom not wanting to scare my boyfriend’s daughter as she was about 4 years old!

I also didn’t know how to fashion/style the scarf, so she helped me with that also.

We went out and someone’s young daughter was looking at me oddly. I felt very self-conscious and I felt a little like the young girl thought I was a Muslim woman. (Not that there’s anything wrong with that!)

The Monday morning, I washed my hair again and this time I did cry. I also had the time to cry as well. And I got how Samantha from (SATC) had felt!

I wept!

That day, I texted my boyfriend and said simply ‘Hey Honey, can you buzz my hair off tonight?’ to which he simply replied ‘sure’ or ‘yes’ or whatever! And that is how I came to lean forward over the bathroom sink about once a month for six months until it started to grow back evenly.

When we had this routine our conversations went something like this;

Keeping in mind my boyfriend wore his hair as a Number one and was from the States and yet to get his permanent residency.

‘I wonder where the local recruitment office is’

To which I would answer;

They will take you before they take me!’

Oh, how we laughed!

What follows is a series of photos of my hair, or lack of and stages of it growing back.

I had pretty much stuck to the same hairstyle since I grew my hair out at about 16, so I really never thought to keep it short.

My bun and long hair had been my style ever since. I have curlier hair when it’s short and that translates to I hate curls!

Now about 8 years later I’m back to a once yearly haircut even if it means I have 4 inches off. I’m OK with that. Its reasonable low maintenance and I wash it on a Monday and Friday, my carers brushing it for me as I stand in the shower then they put it up for me. Sunday and Thursday being my messy hair days.

There are short bits around my temple and the back that drives me crazy another reason I don’t think short hair is for me…

Bad hair day

My anxiety would make me play with it a lot and I don’t need that. So, I figure.

Anyway, that’s enough about hair because when I complained about it to my nurse where I had my treatment she told me not to complain as I was ‘Lucky to have hair!’

I just wish I’d been told to get some hats! I was given a voucher of $50 for a wig and by the time that happened some of the side effects had kicked in and I didn’t have 2 working arms to put on a wig… If anyone has ever brought a wig or gone shopping for one, they would also tell you $50 is not going to help!

When I had no hair I really noticed old men sporting the comb-over hairdo! They really seemed to be more noticeable then. I wanted to go stand next to them and take off my hat and tell them;

comb-over

‘Let it go! It’s gone! The fights over!’

Auditory

Published August 8, 2016 by helentastic67

Auditory 1

Auditory!

Have been having many auditory issues of late. While my stroke/not-stroke has affected the left side of my body from my toes to my face, my brain still functions very sharply. I manage my own appointments and day to day stuff, I pay my own rent and bills and I negotiate much of my own services and whatever! My home is clean and tidy (mostly) and I may be one handed, but I’m always moving around the unit with something in my hand keeping everything in its place.

I am considered a high-functioning ABI! It’s because I’ve had no trauma, which is rare! I’m not saying I’m special, but I am “she says tongue in cheek!” High functioning for me is because I’ve managed to avoid trauma to my brain. No surgery (cutting) and my memory has remained intact. I consider I have a very good memory, long and short term. My mum would disagree, but she would be wrong.

But lately my sensory issues have made me a little fuzzy and it’s starting to bug me.

auditory-training

I can go out and do my own shopping, pay my own bills, do that ‘stuff’ and even reschedule appointments ‘on the fly’ if I’ve got a busy schedule or am early for an appointment and have a little wriggle room but it can all go to shit when someone’s around re talking in my left ear or distracts me somehow.

My concentration becomes harder to keep on track, my self-processes and coping skills can all go to hell in a second.

And no matter how much I plan ahead to have things go smoothly at the end of the day from that moment on, I’m going to get a migraine.

Grumpy! But consistent!

Published August 5, 2016 by helentastic67

Grumpy_bear

Grumpy! But consistent!

Once upon a time, back in the day of when I worked in clubs, I had a habit of standing near the ‘doorbitch’ off to one side.

Actually, at this point I should explain the ‘doorbitch’ was generally the ‘hot-sexy-chic’ with attitude outside checking for suitable clientele to be allowed into the venue. In this case, I am referring to the other ‘Hot-Chic’ who did none of the ‘take your money’ and give you other kind of attitude.

I used to stand to one side of her to wait for my friends to greet people I knew and assure them the next level of the club would soon be open and sometimes to give my drink-card to a grumpy patron who didn’t want to wait for their favourite DJ/floor to be open for their pleasure.

Sometimes, I stood there to be protective of the doorbitch, so I could do ‘Grumpy’ when anyone wanted to give her attitude.

Seriously! You have just walked up three flights of stairs before even paying any money! All you need to do now is pay some money (very little, really) then proceed to the bar (over-there) The DJ booth (over-there) and the dance floor (over-there)!

Have a good night!

Why the attitude?

Grumpy pants

So at times I enjoyed doing the stance of feet apart hands behind the back, polite smile but occasional snarl. Sounds bitchy – don’t I?

My boss came up to me and told me he ‘wanted me out there!’ Talking obviously, circulating and whatever.

And quite frankly, I’d been there from 9pm, I would still be there at 5am! And sometimes I didn’t want to have to be prostituted and paraded all fucking night so I would pick and choose my time Thank-you!

I would wander off to have it seem as if I was doing his bidding, but after I had done the rounds I would return to be told by the ‘doorbitch’ she didn’t care what the boss had said, she appreciated me being there. It made her feel ‘safe’!

The message here is ‘sometime you just need someone to stand out and do silent and overbearing grumpy to make sure people do their job/or just be a decent human being in this case.’

And then there’s today’s dilemma.

Tomorrow, I’m doing a day of training! A whole day! I know exciting!

Its training so I can sit on committee’s and boards and have a voice to make changes etc. Or else what’s the point of having a brain injury and the intelligence of being able to make it easier for others in the future.

Normally, on the Friday (fortnightly) I have certain services to clean my home and get taken shopping.

Trying to plan ahead, I contacted my service provider to move those services to the Thursday. I would still need a carer on Friday in the early/early morning (8am), so I could have help and be presentable and be able to get myself to the city to participate from 10.30am – 5pm!

grumpy sign language

I cannot tell you how many times I’ve had to speak to negotiate, demand whatever for someone to do their God-Damn job and roster people at the correct time, so I can go to this training day!

It has gotten to the point that every time the service provider has failed to get this simple request right, I’ve called on my mum to step in and fix this!

As you can imagine, it’s not the first time and I rarely ask anyone to solve these things, but eventually I think enough is enough and it shouldn’t be this hard. And you can imagine my mum is over this as well, because she first tries to manage me! Which I hate.

Because I’ve still got to deal with what I still have to do. I need to eat, have caffeine so I can go pay a bill so I can keep awake and avoid the pre-dinner kip, so I can go to sleep before midnight…

So I can wake up at 8am and hopefully have a carer here who knows my routine, so I can start the day without too many busy questions, so I can have breakfast on the train into the city.

So, I can collect a coffee before going into training and so I can retain information and contribute not just to the training but to the community and to life.

Sometimes, I want my mum to do silent and grumpy and overbearing to get shit done…

Grumpy cat party animal

The Universe

Published August 1, 2016 by helentastic67

ask-for-what-you-want

The Universe!

Received a great message from the Universe today!

Have had a busy week and while rent is weeks away, I’ve been consulting my diary to schedule bill paying to take advantage of discounts for paying on time, and referrals to my chiropractor that means I can claim back from Medicare.

Every week before I go shopping I budget for cash out so I work with cash as much as possible, $5.00 for coffee here, $50.00 for my chiropractor there, beautician, etc. Because every bit counts. Every Thursday I check my accounts online and worry there’s not enough!

Last night I was considering if only I could afford some new bras! I don’t buy expensive bras. Certainly nothing special. These days it’s all about keeping the ‘girls’ restrained in comfort without the world seeing what kind of bra I’m wearing under my T – shirts!

These day’s I buy boring T – shirts, bras and I buy 2 for the price of 1! Sounds exciting doesn’t it? Not!

I’m happy these days if I can get one that isn’t fluoro orange and is a colour my carers can say “oh! Helen that’s a nice colour!” aqua by the way! That’s about as exciting as it gets! Sorry!

Anyway, I digress. I was considering when there would even be enough to pay the rent, pay the bills and get the Visa down a little (never ending)keep on top of ordering and affording the pills and ‘stuff’ and I could get 2 new bras! WHEN?

And, the Universe provided!

Some people may not be familiar with the concept of the “Universe”.

I’m not a big believer in God! Blind – faith, what-not! And I’m not criticising anyone who does. Do what you will unless it inflicts pain and injury upon others. However, I do have a belief that sometimes, if you’re a nice enough human being, give something to others and not try to live a selfish existence then maybe a higher being will reward or look after you.

And today, it happened!

In the mail came a registered envelope which I signed for. (Not an everyday occurrence) and when I opened it, there was a ‘thank you’ card!

Thank you card

From whom? What for?

And a $100.00 credit card voucher! Oh?

Still anxious from where it had originated………….

Last year, I had volunteered at a new ABI unit with my hospital across town for ½ a day!

I participated in an ‘audit’ to see all new ABI patients from now on at this one especially designed and purpose built unit. It’s for in-patients and while I was never in a position to require inpatient care (bonus) I could really see what a great facility they have built!

Do yourself a favour and avoid a brain injury! However, if you are in Victoria Australia and need to be in an ABI unit somewhere, this is the one you want to be at!

http://www.alfredhealthabirehab.org.au

Pity there are not more pictures, well I didn’t see any but it’s a great, clean new facility where you get your own room and private bathroom! (And just how important that is you don’t want to find out)

And anyway, was not expecting anything but a nice feeling from offering feedback of what I thought would be useful, etc and instead?

Helen gets hew bras.

New peace, love and respect for the Universe…

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!

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 7^th 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…