AFO

All posts tagged AFO

Botox

Published March 29, 2021 by helentastic67

Botox, the Bottom Line

So here we are again, so are the days of our lives!

I’m off for my 4-6 weekly pilgrimage to my GP. He is often/usually/generally/ always my first point of call for getting stuff I need (handy hint!).

Today I’m going to be asking him to help me advocate for me to get more Botox in my leg. I know it all sounds great to put it in your face, however I think it’s a waste of money for 30-somethings to spend, in order to age slowly.

Young people! If this is you? We all age the same, we all go in the ground eventually and Botox is the most toxic thing you can put in your body. I’m just saying, don’t do it for vanity. It’s better for people who need it for medical reasons armpits, legs, arms, etc.

Now, you may imagine Helen seems to have it together when she needs stuff and she has a voice and words, so why do I need my GP for this?

Well firstly, when people want you for a trial that can give them research money and good results (Pick Helen!!). When the research is done, why didn’t you give what you promised? The hinged AFO the appropriate shoes and the overall result being not to need a knee replacement one day.

That is the bottom line for me needing Botox in my left leg. They tell me I don’t need Botox, they even tell me since I now have the correct AFO and shoes.

Yeah! Thank you NDIS (not)!

And I don’t let them forget it! They double down and tell me I don’t get sock fluff build up inside my AFO, so I mustn’t need Botox. Then they even mention I haven’t had it since 2017. Therefore, I really mustn’t need it.

Sleep

Published January 6, 2020 by helentastic67

Sleep

There is never enough when you have a brain injury. Never enough. Add, crazy bitch hormones as I call them, the Peri-menopausal hot flushes, sliding into the pause.

More sleep, much, much more sleep.

But, finally following up on my visit to the clinic. Yeah, I’ve been busy and am now circling back to the thing. I had to go to an older building that is on the same block as the St Vincent’s Hospital in Fitzroy. Seen this entrance for years wondering what was in there. Well, now I know.

I went in a little early, off Nicholson Street and was shown to my “room”. Mum had been to a sleep clinic in the country and told me it would be like a self-contained hotel room.

Mine, no it wasn’t. The room had a single bed – expected. An armchair, nice place to put suitcase and sit to take off shoes and AFO’s – check. A small hand basin, oh nice. Where was the bathroom? Apparently, there were only three of us in the inn that night, me and two men and I got the room closest to the ‘Men’s’ bathroom.

Super! Where’s the lady’s bathroom? Oh great, no shoes or AFO’s. I’ve gotta go for a nice long walk to the lady’s bathroom. Past the waiting room, finished with a big vinyl chair in Orange.

Now, I’m a kid of the 70’s, we had an orange car.

And an orange kitchen bench. (Yes, mum! I hear your voice, it was Mandarin) Sue me! I’ll let you be the judge.

The Doctor who was showing me around was the same age as me and we bonded over the orange of our childhoods.

You know those moments you meet people and if you meet them in completely different circumstances, you might become friends.

We bonded over the fact that neither of us live with other people. I bluntly stated “I fucking hate people!” She laughed and said I was her spirit animal.

 

 

Advocacy

Published October 5, 2018 by helentastic67

Advocacy

Advocacy

Someone gave me the most brilliant analogy for advocacy and the success felt when achieving anything major.

Advocacy success

For example, I’m currently wearing my new shoes and have been for about a month. The shoes are referred to as Custom, not custom by NDIS.

New Shoes

They weren’t made by hand to specifically fit my feet, but you get fitted in the shop and there are layers in the bottom of the shoe that come out to make room for my AFO (Ankle, Foot Orthotics) and the overall effect is, I can walk better, my AFO does what it’s designed to do, my hips won’t be uneven and the most important thing is, I won’t need a knee replacement one day, because I have a habit of hyper-extending my knee.

AFO 1

The shoes actually come from the States (as in America) and are the most expensive shoes I’ve ever owned. They are not yet PAID FOR.

Expensive shoes

I know, sounds ridiculous that I’m currently wearing $350.00 pair of shoes that weren’t paid for by the NDIA (National Disability Insurance Agency – who manage and deliver the scheme)

NDIS

So, the analogy I was given (no, I didn’t forget) was that Advocacy is like trying to climb Mount Everest. Then her advice was to stay at Base Camp. I suggested that was likely wise, since the air is thicker there.

Mt Everest

Grumpy

Published May 28, 2018 by helentastic67

Grumpy

Grumpy

I confess to say, on some days I make my carers laugh before they even get in the front door. I generally sleep until my carer rings the doorbell and wakes me. I know, what a princess, I usually wake and go back to sleep from only hours after I go to bed, so it’s weird sleep and any coma-like sleep I get from 7am until my carer arrives and rings the doorbell is maybe going to wake me.

I stumble out of bed towards the front door, usually calling out “Hang on”. Beside the front door are panels of glass, so I sometimes see them raise their arm to press the doorbell again. I let out a low growl. I’m sure my neighbours must think these women who come and go laughing must think I am mad.

Getting out of bed

At other times like this morning, Aunty Christine (one of my carers I’ve had for the last four years) was grumpy. She has been overworked and recent leave, she has taken off work, to be a full-time carer at home for family and stressing about all of that.

Auntie Christine

I’ve been stressed about life, the Universe and everything also, so while sitting on the edge of the bath while waiting to get dried, I had time to have a little scratch.

Scratching

I scratch just about everywhere I could reach with my right hand. It’s kinda what I do when anxious, it’s also been hot, so some might be heat rash.

Anxiety Scratching

Out comes the Tea Tree Oil and the moisturiser. She prepares to do the oil on my back. The other carers have been neglectful.

Aunty Christine has a little swear about that. (We have set up a standard where she only does this with me and no other clients. I’m very much OK with it) We move to the lounge and she picks up my AFO. She picks it up by a part that was added on after it was made. It was meant to solve a problem that wouldn’t have existed, if they had made what they were meant to make the first time, instead of a ‘Piss-Arse’ effort that caused me more problems than solved.

Swearing

Christine has a swear about the AFO’s also. I tell her it’s getting completely replaced Thursday, one whole day away. She threatens to bring her glue gun to fix it.

She notices my toe nails are a bit long, we had already discussed my scratching, my heat rash on my weak arm, back and side. Basically, anywhere I could reach with my right hand. Again, my nails are being attended to on Thursday. Nothing too expensive or extravagant, just maintenance I can’t do and I’m not allowed to have my carers to do for me.

Long toe nails

Those humans I choose to interact with and the teasing make life all worth while. Make sure teasing is teasing though and don’t take it too far. That’s when it becomes bullying. Very fine line!

Tera Toons

And now, as time has passed I’m now aware the scratching is partly to do with me sliding into the Pause…….(menopause)

MenopauseSuper! Right?

It just gets better and better……..

Gets Better

 

Slave

Published November 25, 2016 by helentastic67

slave_o_368114

Slave

That old line “You get what you pay for!” Trust me! This is not going where you think it is…….

A few years ago, I had Botox in my calf. Seems a waste of good Botox, I know because no one cares if my calf looks ‘younger’ or not! But it was in fact to help me walk better.

botox-calf-muscle

The overall theory was so it would relax certain muscles in my foot so I could walk properly and stop the hyper-extension in my knee, so years from now I won’t require a knee replacement.

hyperextended-knee

In this country, they like to wait until you are “10 years from death” before they give you one. Knee replacements only last 10 years, but how do you know when death will actually occur?

I know, I can’t afford to live past 5pm today however, in this lifetime I’m yet to achieve what I think I’m here to achieve. I don’t yet know what that is, but I’d like to want to hang around to give it a red hot go!

Anyway, as per usual, I digress!

Because I’m a slave to the Public Medical system, because I’m lucky to be articulate and apparently ‘respond’ well to treatments. I am often asked to participate in trials, studies, have students sit in on appointments, the list goes on, believe me!

public-health

So, I was part of a trial over a year ago.

The outcome for the trial was to get Botox on the PBS for all lower limbs, for stroke, MS (whatever) Botox is wasted in faces and more useful in arms, armpits, calves etc.

Digress again.

So, Botox in calf muscles and into hospital! Rehab and the food and isolation is the same!

I may have neglected to mention somewhere that I have this totally awesome thing called a “Drop-foot” (it’s not a cool thing at all)

dropfoot-foot-drop

It’s common for people who have had a stroke! I can’t lift my toes when I walk, it means I drag my toes when I walk, I scuff them.

Botox, relaxes muscles in certain areas. I had my first plaster cast (ever) at age 42 and I didn’t even have anything broken.

And the idea was my calf and foot were forced into a position to better deal with an AFO (Ankle, foot orthotic) that would help my walking and stop the hyper-extension.

But it wasn’t just ‘A’ cast it was ‘A’ cast for a week, then a second cast for the second week! To say, I don’t cope well in hospital is an understatement!

legcast

They told me if I could keep the cast dry and wouldn’t be at risk of falling over I could go home, but even though at great cost to me, I was catching taxis to my appointments, several days a week. I was stressed and suffering migraines most days and they wouldn’t even give me sufficient medication when I had actually supplied my own! (Dr prescribed) medication.

It’s a form of bullying but don’t get me started. They would turn up (Nurses) with a little white pill and I would ask ‘is it Endone? That will do nothing, but it was all I was allowed to have. So ‘Fine!’ Give it! See you in 30 minutes!’ And I just stopped asking!

little-white-pill

So, there was no internet in my hospital! Or there was, but it was so slow, I attempted to post something to Facebook because according to 1st world problems law that’s what you do.

‘Wah! Poor me! I’m in hospital! Getting something fixed that was working perfectly well until I was a dickhead! And now even though my condition is 100% fixable, I want SYMPATHY!!!

sympathy-quotes

Sorry for the rant! But this is based on actual events! They were in the same hospital at the same time, but I neglected to visit!

Do I sound bitter? Not sorry!

They promised me an AFO and shoes the day I left the hospital. They cast my leg the day I left the hospital for the AFO which was to be custom made.

I didn’t get it until a few weeks later. The day I left the hospital, my mum bought me shoes! Because, they told me I had to have been released a month before they could apply for the funding for the shoes!

After wearing the wrong shoes for about 6 months, nearly rolling my ankle and blisters on my foot, I had to protect with self-funded Band-Aids (thanks mum – again)

Side bar! Why blisters are bad 101!

foot-blister

Blisters can lead to ulcers, which can lead to open wounds. As I can’t really feel my left foot, until things really hurt, but by then it’s too late. Do I need to explain this further?

Let’s move on.

So, get the shoes eventually, 6 months later. That was quick because I finished the process with regular calls to Sweppe (The funding body) and the Orthotists at the hospital to nudge things along. And rather than me being able to go to the medical shoe specialist as I had asked the funding again went to the hospital and I ended up with Dr Comfort shoes. They sound like Grandma Shoes don’t they?

Well, No. 1 they still didn’t do what they were meant to!!!

dr-comfort-shoes

After only 3 months of these non-medical shoes I went to see my private orthotist and he looked at the AFO that the hospital had made for me and he stated he wouldn’t have made it like that! And that it had not fixed the Hyper-Extension. Super!

A short time after this, my Sweppe-funded shoes died some. They wouldn’t fund another pair for 12 months. Growl! And my mum drove me across town to a Medical shoe shop and had me fitted for another pair of shoes. I was told these shoes would last years and even if they needed some work they would last forever. Again, upon seeing my AFO, she stated she had “never seen one like that”

medical-shoes

Again, no comfort what-so-ever. My mum funded those shoes. $310.00 be a use I otherwise wouldn’t have any shoes and would be house bound. Pass! I later had my case management organisation refund her……..but it took time.

They are the most expensive shoes I think I’ve ever owned! Young Janus describes them as prison warden shoes. I really miss my Adidas Gazelles. They were the last of my personality and ability to wear my Street-Wear and show something of my personality pre-disability.

friday

And yet, this story is far from over!

Next!

 

Neuro – Part 2

Published November 18, 2016 by helentastic67

smiley

Neuro – Part 2

Oh, and it’s happened more times than I can count that there was a ‘student’ in the room.

nuero-1

So even though I could easily quickly depart, I usually turn to them and point out all the things they might not have picked up on.

I will lift up my pants leg and show them the AFO (Ankle Foot Orthotic)

plastic-afo

I describe where I’ve had Botox injected in both my calf and my arm and I tease open my hand and perform my party trick.

party-trick

Anyway, the goal of having that Neuro appointment and everything and be there on time. I wanted an MRI (Magnetic Resonating Imagery) for my left temple.

I had, had a fall although years ago, it had not been attended to back then. I had smashed my head against a wall. (Not on purpose) and at the time the shoulder had taken precedence.

I wanted my migraines investigated. As I imagined A & B to be related?

a-to-b-walk

And lastly, I threw the problem out of my pins and needles in my good hand!

Left, results.

No MRI – that query was ignored despite the suggestion that I had probably suffered a concussion of some sort.

The migraines? Drugs! I have filled the script but being dumbed down and feeling hung over every day is not my idea of a solution.

drugs

And the 3rd issue? CARPEL TUNNEL!

carpel-tunnel

That’s just all I need!

2.10am

Published September 2, 2016 by helentastic67

 

 

night writing2.10am!

Let’s do a little experiment! Let’s see if I can successfully substitute the F Bomb! (Helen’s favourite word!) With a substitute. Also starts with ‘F’!

Keep in mind my GP will gauge how I am mentally by now many times I drop the Fudge word! When I’m frustrated I use the Fudge word a lot and when I see my GP I debrief him on all the things incompetent people aren’t doing. We kind of case manage my care together which works well.

GP

People with an ABI need a lot of sleep. I can’t recall when I last had a night of 8 hours undisturbed! Seriously, maybe never!

I go to bed late (or early) I think you can tell. Tonight I managed not to have my pre-dinner kip. It’s a miracle! And surprising considering the start to my day.

Went to sleep at 2 am.

Stupid neighbours think it’s OK to run their washer/dryer all night long disturbing my sleep!

So already on bad start!

Fudging asshat! Parks his Bogan car outside my bedroom window. Insists on warming his motor like it’s the 70’s and his car is vintage – it’s not! At 6.30am – Fudge!!!

Asshat! Goes back inside and comes back 5 minutes later.

Can’t believe I’ve put up with this 3 and a bit years!

Get back to sleep!

Instagram-c5c344

8.30am – there is a chainsaw!

What the Fudge???

But wait! Then a wood chipper!

FUDGE!!!

30 minutes and it’s done.

Bet back to sleep after hitting the MEPACS ALARM!
(Diverting a 9.30 wake up)

Had put on my washing machine so again, disturbed sleep.

10.45am – my carer arrives early!

FUDGE!!!

Discussed today with my GP the lack of follow-up by a hospital Orthotists to get funding application for a 2nd pair of shoes.

shoes for afo 1

For say. If these ones get wet, get sweaty or die because they are my only shoes to wear with my AFO (Ankle Foot Orthotic)

“FUDGE ME!” I tell my GP when he asks how hard it is for the Orthotists to do it?

He smiles and I try to look a little repentant.

We already have a backup plan.

I have an appointment with a private Orthotists I’ve seen previously. He won’t have a problem doing the forms to get me the funding for both an AFO and a pair of shoes.

ankle+foot+orthotic+modification

It’s just going to take some time!

And I guess the NDIS kicks in on the 1st of July!

FUDGE!!!

Time for bed.

My first wake-up call is at 6.30am after all!

Strangely, my brain is all systems ‘GO’!

F off trying to sleep

 

 

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