POSITION VACANT- ENQUIRE WITHIN

POSITION VACANT - ASHTON TAYLOR

JOB DESCRIPTION AND BACKGROUND: 

Something that I have not shared on this blog is that a few weeks ago, after my first day of work experience, I had another seizure. The cause? My brain switched back into full time work mode and I started stressing and was also way too tired. These are common symptoms that contribute to a seizure occurring, and that of course is what happened.


You may remember reading in a previous blog that I had a seizure back in late January. The neurologist told me that if I was to have another one within a month of the last one, I wouldn't be able to drive for a year. And on Thursday, I officially received that news- No driving until the 21st of February 2019.  

I remember at 17 being so excited when I got my licence. I was finally independent and could go anywhere without needing my parents to drive me.  Never did I think that in my early 20's that I couldn't drive for a year on two seperate occasions. An age were independence, work and socialising is a major part of my life.

After a few days of being down in the dumps about this, I've finally managed to pick myself up and look at this situation in a positive manner. The situation sucks and I know at times I will regularly get down about it, but at the moment it's time to carry on with life and keep going. In addition to doing this, I am requiring help in the following areas. So, feel free to apply for the following job. Requirements are as follows:

• I require several chauffeurs to drive me around. In return I will give you a chauffeur name, but you are welcome to suggest a name yourself. So far I have 'Driving Miss Daisy' and 'Aunty Uber.' 
• You must be able to chat with me and keep me entertained . I love talking to other people and listening to their stories. It's one of the reasons why I've always wanted to be a journalist. I just find people so fascinating and I want to tell their stories. 
• You need to provide me with some ongoing suggestions for good podcasts for when I'm on public transport, especially any that are uplifting and around the topic of female empowerment. 
• I also need someone to suggest good 'walking shoe' brands. Although I'm not needing them just now, I know that I will get to a point during the year when I will. As this topic bores me silly, your advice will shorten the process.
• I will also be needing a lot of strength and positive vibes around me. This is very important and one that is essential.  I really don't want candidates to be consistently sympathetic towards me. I just need your positive vibes to help me get through this period. I will be forever thankful if you are able do this. You can also provide chocolate, but not wine as Dr Meany took that away too. Ability to provide chocolate is highly regarded for this position,

For more information, please personal message the 'Chronicles of a Lumpy Person' Facebook page.

CLOSING DATE: Ongoing until the 21st of February 2019.

Until next time...

AT xx

LEARNING HOW TO ACCEPT ME

In the last week I've crumbled. My energy levels have been low, my motivation has been lost in translation, my mental strength is nowhere to be found. I simply just 'can't portray the tough girl image anymore.'

You see, your early 20's are considered to be 'the best years of your life' before settling down and starting a family. My idea of my early 20's was to be as sociable as possible, go on at least one exotic European summer holiday and to finish my degree.

Going through living with a rare brain condition and having Cowden's Syndrome, my early 20's have instead looked a little bit like this:

1) A typical night out with my friends usually involves me ordering myself an Uber home at 9pm as I get tired AF (Grandad if you know what this means, I'll be very impressed.) What's worst is that I tend to not concentrate on conversations because it's exhausting for me to keep track of them.

2) Eyyyyy yes European summer holidays. For someone who 'has to have her 8 hours of sleep'  (neurologist's words, not mine) a Contiki/Topdeck tour were you sleep for minimal hours is not really appropriate for me right now. Luckily, I've been to Europe twice already so for me it's not that bad. But I will get to you Santorini... once someone gives me a job (**wink, wink**) 

4) Before you go 'but you finished your degree?' Let me tell you how I completed my degree:

- First of all, I decided to graduate in the easiest way possible. A combination of 16 brain surgeries, a broken ankle, family health scares, a year off Uni, many assignments, repeating and failing units, creations of feature films, ridiculous amounts of marketing reports .... and you have yourself my version of how to get a Bachelor of Arts degree from UWA. Easy yeah?

- 3 consecutive years of completing summer school. This involved cramming a semester of work into a month. Luckily the Tavern was open once I had finished my exams at the end of it....

- I had to acquire the help of Uni Access staff. These officers are equipped to recommend the best options to enable your participation at Uni if you have a medical condition or disability. And let me just say, they are AMAZING.  However, I still had to remember that I needed to fill out paperwork to receive assignment extensions or for requesting a different exam location. I may have missed the deadlines for submitting the latter on a few occasions and found myself running from one side of the campus to the other side of it on exam days (not a pretty sight, trust me.) 

I see a lot of people around me progress further and achieve great things in their life. They work hard and get the rewards for the effort they put in. I'm so determined to put in 110% into everything I do, but I just can't put as much effort in as I want to. Why? Because having epilepsy requires me to have breaks every hour so I don't get stressed and so my brain can shut off from looking at a computer screen. Otherwise, I'll have a seizure and end up not driving for however many more months that I can't already drive for. And accepting this really, truly sucks.

Mum and I have really tried over the years to pick ourselves up and carry on if we have some sort of medical drama. But for me lately, I have not been able to because I've tried to keep up this 'strong' and 'never let anything get in my way' image.  I haven't been able to accept me and it's time to stop acting like this.

Until next time.... 

AT xxx

LUMPY AND BUMPY

It's March already! How did that happen?

I can honestly say that February was a waste of time for me. From beginning to end the whole month was non productive and disorganised. For example, I gave my niece her birthday present on the 3rd of March. Her birthday was the 10th of February. I'm never like that!

One thing I did achieve was a plastic surgeon visit for a lumps evaluation. For those unfamiliar with Cowden's, we can grow many, many nodules, tumours, lumps. On the whole thank God most will be benign, but you just never know when one won't be, so checking is good. I did try the ignoring trick once, but as I flippantly asked my GP to confirm it was nothing to worry about, I could tell by her face that it was serious. That lump I was going to ignore was a breast cancer.

So, fuelled by that experience I really struggle as in reality I can't have every lump removed. If there was a grade given for ability to grow lumps, I'd receive an A+ so it's near on impossible to remove all. The latest culprits are on my arm, stomach and knee. The one on my arm is large and unsightly and I have no doubt it will grow back, but its going and will be replaced by a scar which will fade nicely.

My stomach has long been a problem for growths and thankfully I'm not a bikini wearing babe, otherwise I'd look gross. Most of the growths on my stomach are nodules or black in colour so I don't think twice about them being removed. Black is never good in my mind. The plastic surgeon is pretty sure that black or not, they're benign. But, how can you be sure and can you just ignore something black growing on you? Nope!

The knee one is quite a surprise. I'd been feeling a stinging area on the side of my knee for quite some time, but never associated it with a lump till recently. I should have twigged because 40 years ago, my first lump was in exactly the same place on the other knee. Did I just write 40 years??? Wow 😳.

So, that's the lumpy roll call. My general advice to people who find any lump on their body is to get a GP to check it out. Most lumps are nothing, but only someone qualified can start the process to confirm this. If it worries you, ask for it to be removed. No use stressing about something so fixable.

On other news, I would like to thank ABC country radio for inviting me on their radio programme on rare diseases day, to speak about living with a rare disease. It was a real privilege and they let me talk for ten whole minutes. So happy to be able to advocate for my condition. Ashton also gave it a red hot go. Her post was shared many times and read by thousands. Thumbs down while we're at it to online agencies who ignore such pieces, in favour of perpetuating rubbish events currently in the media. We only wanted one article on one day! It wasn't a big ask. Advocacy is a never ending struggle.

Have a great week. Till next time

ST XXX

RARE DISEASE DAY 2018

Celebrating my sister's 21st in September 2017. 

Picture this: 

You're lying on a hospital bed after your doctor has cut short your brain surgery procedure. His reason - 'there is a suspicious nodule on your enlarged thyroid and I want it checked out ASAP.'  

You're frustrated because once again it's another 'health drama' to add to your list. You're angry and more than a tad 'pissed off.' 

However, what you're most annoyed about is that the topic of Cowden's Syndrome is raised again. 

Doctor- 
'Have you been tested for Cowden's Syndrome yet? I think your enlarged thyroid and the nodule on it is related to Cowden's Syndrome.' 

What is Cowden's Syndrome I hear you say? Cowden's Syndrome is a disorder characterised by multiple noncancerous, tumour-like growths called hamartomas. It's also associated with an increased risk of developing several types of cancer, particularly cancers of the breast, thyroid and uterus. 

Cowden's Syndrome is a highly-underdiagnosed condition that 1 in 200,000 people in the world have. Mum has the gene and has had two cancer diagnoses. It was highly suspected at the time of my first brain surgery that I did as well. 

But I never wanted to be tested because deep down my gut feeling was that I knew it'd be positive. 

At 21 years old, I just couldn't fathom the thought of having another medical condition to worry about on top of an already existing rare brain condition. I seemed to spend my time in and out of doctors and hospitals as it was. Why spend more? 

However, my thoughts and feelings about the situation did change over time. I decided that I needed to know for the sake of my health and for when I want to have children later down the track. It was better for me to be organised in preventing any future dramas. 

Recovering after thyroid surgery in August 2016. 

After testing and patiently waiting for three months, it was official. I had inherited Cowden's Syndrome as well. 

Since the diagnosis, I've been through several procedures and check ups. For example, I've had my thyroid removed. The doctor who performed the procedure was so impressed by the size of it that I felt like rewarding myself with a gold medal. He said they stopped counting at 100 nodules. Goodbye thyroid and goodbye elevated risk of thyroid cancer. Good riddance actually!

I also have to have regular ultrasounds on my breasts, with my last check-up being both an ultrasound and mammogram. Once again the count is through the roof but I'm being well monitored. I feel so out of place everytime I go to an appointment. Picture this... I'm sitting among 40 year old plus women. I'm too young to be here. I don't want to think about breast cancer and stuff like that. But I've learned that ignorance is not bliss. I need to know. 

Graduation Day from UWA in September 2016.

Cowden's Syndrome is a disease that is with you from birth. It is genetic. Having this condition has however had no effect on what makes me who I am as a person today. Despite everything, I've graduated with a Bachelor of Arts from UWA, I've travelled the world and I live life as best as I can. And I'm a really nice person if I say so myself. I just deal with my situation and get on with living!

Rare Disease Day is happening on the 28th of February worldwide. The main objective of this day is to raise awareness amongst the general public of conditions like Cowden's Syndrome. It also encourages researchers and decision makers to address the needs of those living with rare diseases. From my perspective, it would be awesome if one less doctor says 'Cow-what?'

One common trait you find with people that have rare diseases is that they never, ever give up. They are out there to spread awareness and they want to champion their story. Our stories are so rare and so uplifting that you'll want to help us continue our fight for awareness in this world.

Until next time....

AT xxx

LUNCH WITH MOTHER

Lunching with my mother is always an event because she is the queen of being " hangry" and it's fun to see the change food brings. Did I say fun? Read on...

Yesterday after taking Mum to a medical appointment which ran 45 minutes late to start with, Mum decided that if she didn't eat soon, she would perish on the spot. This actually happens frequently so I wasn't overly alarmed. I looked at my watch and decided that I had 3 hrs to make my plastic surgeon appointment at 1.30. OK MOTHER lets do lunch!

Cafe number 1- Mum decides that it's disgraceful to have to pay for parking as well as food so we move on. ( I sort of agree)
Diversion to pharmacy...time is ticking.
Cafe number 2 - we are greeted with a marvellous array of muffins, lunch time foods and gorgeous seating. I get excited. Mum likes nothing. I get deflated and apologising to the waiters we leave.
Cafe number 3 - Mum does a food reconnaissance and likes nothing. I knew this was coming the minute I saw the quinoa salad. She hates quinoa.
We cross the road.
Cafe number 4 looks inviting but there is not one free seat in the house...so we leave.
We cross back and spot an Italian restaurant. Mum loves Italian anything.

The Italian restaurant is staffed by an Italian god who announces he is 100% Italian, when Mum quizzes him to see if he is the real deal. Mum falls in love and starts telling the man her life history. She also gets an overwhelming desire for pasta.

She takes AGES to choose a pasta because apparently she likes them all. I choose for her and face my own dilemma. There is NOTHING on this menu that a person with a touchy gastric sleeve can eat. I decide that I can pick at a chorizo salad. So we order and we wait.

The next bit is like a movie scene where as the clock ticks the actors are filmed in various positions. I swear that Italian god was growing the wheat to make the pasta to make Mum's lunch. It was taking ages. She was hangry. I was hangry. The world as we know it was ending and I needed to be on the other side of town in 40 minutes . There were 6 million traffic lights between me and the hospital...I needed to take Mum home...the hospital was notorious for bad parking...nothing to be done except ask for a takeaway.

The eyes of the Italian god sank. I had insulted him by asking for takeaway. He has beautiful eyes which any other time I would have been happy to check out further. But, no...fuelled by hanger, I threw Mum and two take away containers in the car and lead footed out of there.

Mum was deposited home safely.
Every traffic light bar one was green. At the red one I opened my overpriced chorizo salad. It looked hideous.
I nibbled on some chargrilled bread and some white gunk fell on my new skirt. Fabulous, now I had a doctors appointment AND a lawyers appointment where I would smell of vomity cheese.
I nibbled on some chorizo, got out of the car and threw the lot in the bin. I do not like processed meat.

Wondering if there was a bottle shop hiding somewhere in the hospital, I headed to my appointment which I arrived at bang on time.

Still hangry.

ST

ANOTHER YEAR OLDER

Today I turned 24.

I've felt incredibly odd about it all day. I'm now at an age where I am considered to be in my "mid 20's" and I don't know how that really sits with me.

I always looked at this age of being one of 'settlement.' I thought by this stage of my life I would be settled in a job, in a relationship and had saved enough money for a house deposit. But as always, life doesn't always go to plan, and for me I've finally learnt how true this is.

Age is such a funny thing. We spend our whole lives thinking that we need to achieve a goal by a particular time. That if we do, we'd be satisfied. That if we do, we'll be happy.  However, what we don't realise is that while we are so determined to reach this goal of being 'happy' or 'settled', that we miss out on what other things life has to offer.

'Long term happiness' is not real. It will come and go, but there's no such real thing as 'being happy forever.' What is real is learning how to embrace opportunities, learning how to stand up for yourself in a tricky situation, learning how to find the good in the bad and to find the strength to get through a tough situation.

I like the rest of the world have been reading 'The Subtle Art of Not Giving a F*ck' by Mark Manson. It's an incredibly motivational kick-in-the-ass book and one that I encourage you all to read for yourselves. He sums the above perfectly with this quote-  "The desire for more positive experience is itself a negative experience. And, paradoxically, the acceptance of one's negative experience is itself a positive experience.' 

In the last 24 years, I have gone through more than what any other person would have done in a lifetime. I've had 16 brain surgeries, I've graduated from university, and I lived in Melbourne for 6 months. There is so many more other things that have happened that I could list both positive and negative, but they have all helped me into getting to this stage of my life.

While the thought of being one year off the quarter life crisis scares the crap out of me, I'm actually pretty excited for what's to come.  Life always has a way of working things out and I know that my path is waiting for me to ride along it.

So here's to the year of 24. I may have not achieved what I set out to achieve by this age, but you know what? I really don't care. Turning 24 instead comes with a feeling of contentment . It comes with a feeling that is ready to embrace the opportunities and challenges that come with it.

As always....BRING IT ON!

Until next time...

AT xxx