THAT 'NICE' FEELING

Last week I went out for for dinner with a bunch of girlfriends. For 30 minutes, we discussed in depth what Netflix shows we've been watching, went into shock if we hadn't seen a particular show and exchanged suggestions on new shows to watch.  I now have a list as long as my arm for what I need to watch over the next month or so.

I'm not going to lie, I've been a bit down in the dumps lately. What's kept me going? Along with the support of friends and family, I've been watching Will and Grace. I never watched the show when it was on in the early 2000's. But now, I'm glad that I am watching it and have got into the reboot very quickly. The show is just 'nice.' It's nice in a way that I can have a laugh, and escape the reality of the real world. I now frequently imitate Karen by calling everyone 'honey' and on a daily basis embrace my Grace Adler quirkiness (for me though, this is not hard!)

I also did this with Gilmore Girls when I was finishing my degree (in addition to the copious amount of red wine I drank!)  I will be forever grateful to my spirit animal Lorelei Gilmore for letting me escape from the stress and harsh reality of forcing myself to finish my degree. It was a great help and a 'nice' show to watch.

We currently live in a world were a red headed clown is running one of the biggest countries in the world where a terrorist attack could occur anywhere at anytime. We cannot predict what will happen in the future, and we are forever furious at leaders who are corrupt or people who treat others with disrespect. So we latch onto something that is joyful and provides us with comfort.

I even feel this watching the football (the Aussie rules type.) For 3 hours, I can sit in front of a TV or be at the ground on match day yelling for my beloved West Coast Eagles. Being attached to the 'West Coast Eagles' community gives me a sense of identity and something that I belong to. I met one of my closest friends through our love of football and she has contributed to giving my life a 'nice feeling.' That I will forever be grateful for.

I'm not going to sit here and tell you all that we should all be finding something 'nice' on our TV screens that gives us a distinction from reality. But for me, it's something that keeps me sane. I can forget about my Cowden's Syndrome and my doctors appointments. I can forget that I still need to look for a job. I can forget that I'm down in the dumps.

I know there are other 'nice' things out there that could give me comfort. Mum's recently been trying to get me into crocheting, but I get frustrated with it and give up in two seconds. I want to learn how to use my SLR camera properly, but I struggle to concentrate and get too tired. My sister has tried to teach me how to do my make up. She has explained things to me so many times, but do you think I remember? No bloody way.

So for me, something that is easy and 'nice' for me right now is TV. It's simple. And at the moment that's what I need. After many years of not accepting that I have Cowden's Syndrome, I just need to have something 'nice and easy' in my life. And one day when I'm well rested and back to my usual self, I'll find that motivation to do something other than 'be attached to nice TV shows.'

For now, I sit back with my coffee, pop on the latest episode of the Will and Grace reboot and carry on with my day.

Until next time...

AT xxx

THE LAST TEASPOON

When I was young, I watched a very funny TV skit on the Paul Hogan show. ( For those who don't

know who he is, think Crocodile Dundee). I can't remember exactly what it was about, but I do remember the ending. A man was washing up some dishes and no matter how thoroughly he scoured the water, every time he pulled the plug, there was always one teaspoon which had managed to avoid being washed.

Now, I can't do the humour of the skit justice at all, but ever since I watched this, the saga of the last teaspoon has stayed with me. Every time I wash dishes ( no, we don't have a dishwasher), I think of this skit and yes sure enough, there is always one teaspoon that makes it through unwashed. You can almost hear it yell " Take that sucker! I'll shower when I want".

I've grown rather close to that " last teaspoon " over the years and I've become quite a fan of the notion that I too can do things on my own terms. Maybe it's an older woman thing, but these days I seem to be a lot more ok with certain behaviours than I used to be.

Here is a list of my current top teaspoon moments;

1. If on a certain morning I don't feel like getting out of my pj's I won't. There is no pj monitoring police floating around the neighbourhood noting what time I've  changed my clothes and charting my misdemeanour. In my opinion, wear them all day if you must, though please don't leave your house wearing them . That becomes a different issue all together.

2. If I want to watch a Netflix show, I will do just that and while we're on it, watching Netflix all morning in bed is perfectly acceptable. So is ignoring housework to watch Netflix. Let's face it, nothing is going to get done properly  till you find out what happened next, so you may as well watch it.

3 Spending money on yarn is a perfectly acceptable behaviour. Yarn brings joy, peace, calmness, creativity. Only Nutella can compete, though Nutella also gives me hives and a sugar high. I will spend money on yarn ( possibly to the exclusion of food)  and I will stop... maybe never.

4. If I have no one to have a coffee with, I will coffee with myself and enjoy my own company. Truth be known I'll probably spend the time weighing up the pros and cons of buying a chocolate muffin. It never used to be the done thing to sit alone. God forbid, people might think you had no friends! But these days to hell with all that nonsense. I no longer need to move in a pack and surprise, surprise I actually enjoy my own company.

5. I WILL smile at people, say hello and give out compliments. No, I'm not weird. I'm just nice and I want to stay like that. Why is it even a " thing" that being the above is construed as weird by some?

6. I hate and have always hated makeup. If I hadn't been present at my daughters' births and therefore have irrefutable evidence they are mine, I would think they were adopted. Both love makeup, one to obsessive levels. I'm no longer worrying about this one any more. Life is too short to be pressured into wearing makeup religiously.

7. I don't like kale, green tea, coconut water, protein drinks and any other health food. I just like food that tastes like food, looks like food and smells like food. And I love coffee...quit telling me how much coffee is safe. You have NO idea, but I know exactly how little coffee is dangerous for you.

This list is obviously a work in progress. I'm sure I'll add to it!

Long live the last teaspoon!
ST

FEMALE EMPOWERMENT

Last week, I spent Monday morning watching the Oscars. One of my favourite moments from the show was when Frances McDermond won the "Best Actress" award for her role in 'Three Billboards Outside Ebbing Missouri.' 

With a standing applause from the audience, Frances decided to turn her acceptance speech into a stance on equality between genders. She then invited all of the females who were nominated for an award that night to stand and be congratulated by their peers for their achievement. This was followed by a mention of "inclusion riders" - a clause which is added to an actors' contract to ensure that casting and production staff meet certain levels of diversity e.g. inclusion of women. 

Cue Ashton bawling her eyes out.  

Whilst in the middle of accepting one of the most prestigious roles in Hollywood, Frances made the selfless decision to champion the subject of equality between women and men. She and many other women have echoed this support and empowerment during the recent film awards season. 

I truly believe we are in a stage right now where change is happening and equality between sexes is finally finding it's equilibrium. Campaigns such as #MeToo and #TimesUp are movements championed by not just those in the film industry, but leaders worldwide who are passionate and are determined to fight for change. People such as Oprah Winfrey who made mention of the #MeToo movement while receiving the Cecil B. de Mille Award at the Golden Globes. Or Malala Yousafzai, who fought for female education in Pakistan and received the Nobel Peace Prize in 2014. 

Ever since my sister and I were young, mum and dad have instilled in us that 'if we want to achieve or do something significant, we had to work hard for it.' As young females, we were determined to do  this. 

At 15, I marched into the deputy principals' offices with a proposal for a 'Pink Day' to raise money for Breast Cancer awareness. My lip trembled and I was filled with nerves as I presented my proposal to them. I remember thinking, "they won't listen to me. They'll just push it aside. Why am I even bothering?"  But it turned out that they put my idea to the school board who allowed me to go ahead with pretty much decking out the school in pink. We raised over $700 that day which filled me with so much pride and joy. 

My sister Ciara on the other hand has always wanted to be a performer. After numerous auditions, she is currently in her second year of a Bachelor of Musical Theatre at the prestigious Western Australia Academy of Performing Arts (WAAPA.) Getting into a course like this is not simple. She put in hours and hours of work to get to this point, even though it was an extremely difficult time for her. Looking back, she is so happy to have toughed it out because now she is one step closer to living her dream. And we all get a thrill not from just seeing her perform on stage, but knowing that she is so close to living out her dream. 

There are many female role models that inspire me on a daily basis. They're hard working, they're strong and aren't intimidated by the judgements other people make of them.  If they see that something needs to be changed for the better, than they'll fight for that to happen. If someone tells them they can't do something, they'll do everything in their power to prove them wrong. 

To have people like this to look up to and have around you is an amazing feeling. This is how empowerment and change happens and we need more women to see that they are capable of finding their voice to make a change themselves. Therefore I say this: 

To all the women out there, who are reading this blog. 

May you have the courage to stand up for what you believe in. 

May you stand up for injustices in this world. 

May you never feel ashamed for the life decisions you make. 

May you support each other and lift each other up. 

May you tell your fellow girlfriends how amazing and beautiful they are. 

May you conquer your dreams and not let anyone tell you that you can't. 

Until next time... 

AT xx 

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