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.

If #cats did Mondays

Published July 11, 2016 by helentastic67

Ironically, Monday’s are rough at my house. Struggle to snap the sleeping pattern back to cope with leaving the house for appointments. Disaster!

Two on a Rant

Monday

View original post

Cats with Jobs

Published July 11, 2016 by helentastic67

I’m wanting to get funding for Jamima from the NDIS. I might not be able to as I’ve had her longer than I’ve had my disability. And not as long as I’ve had my AVM. So, the prosecution rests!

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…

Santa

Published July 1, 2016 by helentastic67

Kris Kringle

Santa!

I’ve been asking people this month what they get from Santa?

I’ve only really got another week of this to go I think, anything past January might be pushing my luck, but generally the reaction I get is an odd look that tells me I’m being nosy and they don’t know why I’m asking. So I explain…

If you tell me what Santa gave you, I can judge if it’s a good present or a rubbish present. Yes, I’m a good judge of this! And of course, if you got a crap present then that tells me Santa thought you weren’t good last year!

Present is always a drama in our family. A few years ago we gave into my older sister’s insistence to do a Kris Kringle, so we only need to get one gift.

I love buying gifts, however cash strapped Santa is a bit of a mood-kill!

Christmas for me becomes the time I can ‘ask’ for the things I didn’t get for my birthday. And in recent years it’s been a way family could get things for me that I needed. Underwear! Yes! I know! It happened! The worst gifts at Christmas are jocks, socks and handkerchiefs! Unless you get Thunderpants!

They just make me so very happy!

Thunderpants

Check them out at http://www.thunderpants.co.nz

This year I also bought myself the two books I always hope for that are purposely released in time for the gift giving season.

Whatever Jamie Oliver’s latest cook book is and whatever new Patricia Cornwall book is also in stores.

I don’t read the novels anymore. With my eyesight it hurts to read but because of how organised I am, it hurts my pocket some to bury them but would hurt my brain more to thinking my bookcase is incomplete.

Bookcase 1

*Note – the books that are note spire facing out are the ones I’ve not read. So it’s how I can tell I’ve not read them.

P.S. Keep in mind I don’t wrap presents anymore it’s rather disappointing results when you have to gift wrap one-handed! But, I sent gifts home a few weeks earlier and they never got wrapped! Then, I had to remind them “Where were they?”

What did I do last year that was so bad?