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

LESSONS FROM STRANGERS

I'm almost one month into my three months of not driving.

So far I'm doing ok. I'm walking a lot, getting lots of lifts from family/friends and catching way too much public transport. 

After living in Melbourne for six months, public transport over there was not a problem for me. Where I was living, there was a tram just out the front of my house that came every 5 minutes which took me straight into the city. It was an absolute breeze!

Returning home to Perth, public transport is at the opposite end of the spectrum. A lot of extra time needs to be added on because most often you'll need to catch more than one bus or train to get to a certain place. And if you ask anyone who does this commute daily, they'll describe it in a furious manner with many expletives muttered in between

To give an example, the new Optus Stadium (still wondering why they couldn't have just called it 'Perth Stadium') will only be accessible via public transport. Cars can't drop people off close by like they used to at Domain Stadium/Patterson's Stadium/Subiaco oval. And because of this change, people are furious because they'll have to take many trains/buses to get to the stadium. Or as how other people describe it, 'they need to stop making Perth transport like Melbourne transport.' 

If you've read my previous post, you would know that I'm doing my best to put the phone screen down at the moment. Well because of this, I seem to be having more conversations on public transport with the people around me.

For example, last week I was chatting to a lady on the bus who was in Perth for a psychology conference. In the 20 minutes that I was on the bus for, we got chatting about each others' family and reasons for our chosen careers. She told me about how she had taken several years off work to look after her unwell child and was now finally in a place were she could return to study. She also told me about her husband who had studied acting at the Western Australian Academy of Performing Arts (WAAPA),  but turned down a career in it to take up professional photography.  Life for her and her husband had changed dramatically over the years, but together they just kept pushing through the tough times.

Today I had a chat with a lady on the bus who has been in Perth now for 24 years. Her and her husband came here for a holiday in 1994 and loved it so much that they decided to move their whole British family over here. She told me how important it was for them to embrace new and exciting opportunities because life is too short to waste them. If she hadn't taken the risk, she wouldn't be so content about life right now as a retiree.

With my 24th birthday coming up next week, these ladies have taught me two very important lessons:
- Yes, being 'unemployed' sucks. But, tough times do pass and this tough time won't be forever. I just need to keep plodding along. Something will come up!
- I need to get out of my comfort zone more. For me, getting out of my comfort zone is like being thrown in the deep end and not knowing how to swim out of it. It's difficult, but sometimes that's the best way to learn and become a better person.

Public transport in Perth will improve as the years go on, but like my conversations with these two ladies, lessons from strangers on public transport will help improve things for the days and years to come. I'm going to make the most of the next two months of not driving and try and learn from as many more people as I can. 

Until next time....

AT xxx 

RARE DISEASE BURNOUT

It's been 10 months since I posted anything. Why? It's actually really simple. I woke up one morning and the urge to write was gone.

OVERNIGHT I didn't want to share my life with CS anymore .
I didn't want to be different with all my ailments and tests and surgeries and nonsense AND
I especially didn't want to talk about my daughter Ashton any more. It was too painful.
Enough was enough. I had rare disease burnout.

I suppose in retrospect, I felt that if I went quiet the condition would too. Let's just say it didn't go anywhere.

Time is a great healer of emotions and not surprisingly that's why this blog is back. You see we're not done. We'll never be done. We have a role to play with advocating for this medical condition and we take that role seriously.

You notice I say WE. Yes, from now on this blog will be a joint effort and I will let my daughter tell her own story. There may be overlap. I am after all a parent of a child with a rare condition. I happen to have the same condition. 1 in 200 000 and we have 2 in this family of 4. Still does my head in.

So since we met:
-While actively trying to pretend I didn't have a medical condition, my mother was diagnosed with cancer. She is a private person so I will not discuss her condition. The only thing I want to say is that her primary cancer was in the bowel and this has made me question her negative CS diagnosis again. But it is really pointless to pursue this now. The months have been filled with being a daughter and helping my mother through this in any way I can. I won't lie. It's been hard.

- The aftermath of the gastric sleeve surgery from hell is an unwanted gift that keeps on giving. Despite another procedure to dilate ( open up) my stomach opening, eating is no longer a pleasure and causes me no end of grief. But...we will leave this for another blog post one day.

- things keep growing on me. Remember, a person with CS has a tendency to do this. At time of writing an odd shaped cystic lesion is growing on my stomach wall. I'm sure its benign but I'm off to the plastic surgeon next week to make sure. It's ugly and very annoying but unfortunately it's not alone. My arms are unsightly with scarring from previous lumps and more are about to join them as new lumps have emerged. These are usually lipoma ( harmless) and they are removed when there is a good reason. My good reason for this one is IT HURTS. My plastic surgeon is great. He takes them off when I've had enough.

- I'm meeting a new specialist in two months who supposedly can manage my condition for me. After managing myself for years I'm slightly cynical. This is gonna be good.

Till next time
ST

NORMAL LIFE vs HYPER REALITY

Do you spend too much time engrossed in social media? 

Do you find that you know way too much about a person that you've never met?

Is the first thing you do in the morning check in on Facebook to see what you missed overnight?

If you’ve said yes to any of the above, we share a very deep connection. 

Hi I’m Ashton and I am a social media addict. 

Yes that’s right , I am a social media addict. And after many years of denying it, here I am finally admitting it. It's become an unhealthy obsession and I've just about had enough of it. 

My addiction with social media started back at 11 years old when connecting to the internet required dial-up and hours were spent redesigning my Myspace page. Since then, the world of social media has exploded with everything ranging from Snapchat to Twitter. Over the years I’ve downloaded and used too many social media channels to count. I’ve had everything ranging from a Tumblr blog to Periscope, which is a live video streaming app.  

The other day I was reading a well known social media influencer’s Instagram page (yes another social media channel!) I’ve been following her page for a few years now and really admire how she’s made a name for herself as a business woman and influencer in society. Her recent post spoke about people making assumptions and forming uneducated opinions about her personal life and the effect it has on the people around her.

It got me thinking. Why are we so focused on perfecting a certain look and forming a certain opinion because of what we see through a social media channel? The majority of social media content I follow is full of glitz, glamour, bright lights and flashing cameras. I follow many social media pages where influencers are frequently attending lunches, are gifted products from PR agencies and are dressed in the latest designer gowns at formal events. How am I meant to be the best version of myself when I am viewing content like this? Why am I so fascinated with this content when all it is doing is making me feel inferior? Who cares if that top is from XXX and costs XXX? Who cares if you've been gifted a piece of jewellery that costs XXX? I can't afford that, so why am I feeling like I'm not living up to societies expectations because they are posting this content?   It's just not real, and I've had enough of it. 

While this 'hyper reality' life is something that we'd like to become accustomed to, we often forget about what these people have gone through to get in front of those lenses. We don't see the hours put in at the gym to perfect that particular look or the tears because they've missed out on important family celebrations/weddings. Or even the stress to get a babysitter/nanny so that their 'social status' was not missing from an event.

As you may or may not know, in the last year I worked as a social media manager.  To counter defend what I have said above, social media is a great marketing tool for businesses to use in terms of creating brand awareness and business growth. For certain businesses it works a treat and it’ll be a part of their marketing plans for years to come.  In my personal experience though, being on social media all the time and using it in a way that has an effect on your personal life is somewhat counterproductive.

There is much media commentary out there about the effect social media has in society.  However, what I'm finding that they don't say is that when you're constantly comparing yourself and making assumptions about someone on these channels, it becomes exhausting, and you may not even realise this. You are living in a world where the switch in your brain doesn’t turn off. You are living in a hyper reality world that serves no purpose than to make you feel like you aren't conforming to what is 'supposed' to be right in this world. 

One thing  that I’ve learnt as a person with Cowden's syndrome, is how important it is to 'live in the moment.' Although this sounds cliche, with a medical condition that unfortunately comes with numerous medical problems, I want to focus this year on living life to the full.  It’s time to put the phone down and embrace myself more in what life has to offer. I know that it is easier said than done, (I can hear those of you saying ‘yeah fat chance that’ll happen Ashton’) but it’s something I just really want to do.

If you have any tips on breaking this hyper reality cycle I'm in,  please let me know! 

Until next time….

AT xx  

THE ART OF FRUSTRATION

How am I feeling right now?

I’m frustrated. I’ve been looking and applying for jobs for a month and a half. My days consist of looking at my laptop, sending off job applications, going for my daily walks, getting rejection emails from those job applications and watching at least one episode of Will and Grace a day. All I want is money for rent, money so I can buy food, money to have a life and money to go on holidays. That dream of dipping my feet into the pristine waters of Santorini just seems so unachievable at the moment…

During my first year of my communications degree, it was stressed that we get as much work experience in our chosen future field of work as possible. At the time, I was highly invested in becoming a journalist, so I went off and completed work experience at my local hometown’s newspaper. Fast forward a few years later, and after completing jobs that just weren’t right for me, I’ve reignited with my love of writing and love of telling people’s stories.

Since returning to Perth, I’ve been applying for numerous journalism and communications jobs.  Although I have past experience to do with these areas and have the skills to complete the jobs, the feedback from those emails/interviews has been something like the following:

‘We’re really impressed with your CV, however there were people who had more experience than you.’

‘We’d love to give you a job, but we haven’t got enough money to have you on board.’

‘You don’t have the paid experience that we are looking for.’

After all the work I’ve completed in paid/volunteer work, I STILL DON’T HAVE ENOUGH EXPERIENCE! And that for me is frustrating, because I have worked really hard in the past few years (on top of everything I’ve been through!) to get to where I want to be.

As my days have only consisted of what I’ve stated above, I’ve really been struggling to get out of bed in the morning. And for me that is FRUSTRATING because I am a very happy, bright and bubbly person. Although I have been trying my best to get motivated to achieve something each day, my morning routine sounds a little bit like this.

6:30am: ALARM 1  - ‘I can’t be bothered. I’ll set it again for 7:00am. ‘

7:00am: ALARM 2 – ‘NOPE. I’m only applying for jobs all day. I don’t have that much to do!’

8:30am: AFTER SCROLLING ON MY PHONE FOR AN 1HR AND 30 MINUTES -  ‘GET UP, GET UP, GET UP. DON’T WASTE YOUR DAY.’

Here’s another point to add to my frustration. I can’t drive for three months. Yes that’s right. Yours truly had another seizure a couple of weeks ago and now can’t drive for three months. I’m desperately trying to think positively about the situation. If I go anywhere, I have to add on at least 30 minutes preparation time so I walk to the place or catch the bus/train. While it’s great exercise, I have moments were I just want to fire up my car engine and head off somewhere.

This period is tough and frustrating for me right now and especially when you have Cowden's Syndrome because you’ve got to think about your health at the same time.  This phase will pass, but I just don’t know when.

Now that I’ve got my frustration off my chest, I’m off to watch another episode of Will and Grace.

Until next time….

AT x